Parker's Battle with ADA

Happy 3rd Birthday Parker!

2009-01-20T12:56:00.004-05:00

It is so hard to believe that January 15th marked our precious little boy's third birthday. This birthday was extremely special for Parker because it was the first time that he was able to have his cousins and two friends here to celebrate with him. As usual, daddy did a fantastic job decorating the cake. Parker really wanted a WALL-E cake and I don't think anyone else could have made him a more magnificent cake. It truly was amazing and Parker was so proud of it. We have spent the past couple of days enjoying his new gifts which has made time pass much more quickly. We hope you enjoy the following pictures as much as we do.

Once In A Lifetime!

2008-12-28T18:25:00.006-05:00

As everyone knows who has supported us through Parker's journey, this has been an extremely difficult process for us. It feels like our life has been similar to a roller coaster ride with so many ups and downs. However as we have mentioned time and time again, we have been so fortunate through this entire experience to be blessed with the generosity and kindness of others. I must admit that at times I am quite blown away by how supportive and caring friends and complete strangers can be. Today's article truly reflects human kindness.

Approximately a year ago we received a letter from the owners of one of our local McDonald's expressing a desire to try and support our family. Parker's horrific disease has been devastating to our family on many different levels. As a parent and a mom to Parker, it breaks my heart that he has missed out on so much already in his short life. I know that he is very happy and loved and because of his lack of experiences is simply quite content because he does not know any different. However, as he approaches his third birthday I still get that aching feeling every so often just wishing that our life could be as "normal" as so many other families. I often wonder how I will ever overcome this experience from an emotional standpoint because it really has scarred me in so many ways. Every time I hear someone cough or sneeze, I dodge them as fast as I can. My hand are cracked from the amount of hand washing and sanitizing I do every day and my hair definitely has inherited a few more grey! However, it is much more than the physical signs that seem to make life so difficult at times. It is the impact that this has had in my mind. The worry that the first time Parker gets sick I will suddenly be back at Sick Kids and the fear of ever having to mask and gown again. It is so hard to protect your child so much from illness and germs for such an extended period of time and get the constant fear out of your head. Although Parker is definitely doing much, much better now- it is a difficult process for me to try and adapt to new lifestyle changes as a result....

Anyways, every once in a while when you least expect it, there always seems to be a rainbow that shines over our cloudy days. The owners of our local McDonald's have definitely been that rainbow and have given Parker a once in a lifetime opportunity. On Boxing day, Parker along with his cousins and two friends were invited to be the first guests to play in the indoor playground of their newly re-built store. This was such a special experience for all of us, but especially Parker. He has missed out on so many wonderful opportunities in the past, which made this incredible experience mean so much more. We sincerely want to thank the owners for this extremely kind gesture as these memories will last us a lifetime. We will never be able to drive by any McDonald's again without the reminder of how happy and "normal" it made our precious little boy and all of us feel. We are so thankful.....

Merry Christmas

2008-12-23T19:17:00.004-05:00

This is just quick note to wish everyone who still follows our site a very Merry Christmas and best wishes for a healthy and happy 2009. We will post pictures of Parker's third Christmas which we anticipate to be an absolute blast. He is so excited for Santa Claus to visit our home and put presents under our tree! Although he changes his mind frequently about what he would like, I laughed when he asked Santa to bring him some chocolate cake today! We thank everyone for their continued love and support to our family. We are truly blessed.

Ciao!

It's Been A While....

2008-10-30T14:23:00.009-04:00

Wow. I honestly cannot believe that it has been so long since our last post. At this point, I am not even sure if people continue to check our site....Time just seems to have a way of slipping by and before we know it, it's two and a half months later. Parker continues to do very well. He had an amazing summer and spent a lot of time with family and some friends. It was such a great feeling to feel somewhat "normal" again. However, as the winter season slowly approaches we are already finding ourselves spending a lot more time indoors and much more isolated. This makes me feel sad for Parker because he has really enjoyed a lot of freedom that he experienced over the summer and rightfully so. I am hopeful that by next year at this time, Parker will be experiencing many more firsts in his life and not have the limitations he has now. It will be such an incredible feeling to be able to go back to work again and for Parker to hopefully be out in the "real" world.....

I have decided to post a variety of pictures today since I really do not have that much to say and I know that people would probably rather see pictures of the little monkey anyways. We hope that this blog finds everyone healthy and well and that those celebrating Halloween have a safe and fun night! I will definitely post some pictures of Parker in the next few days in his costume.

Ciao

The 2008 SCID Picnic!

2008-08-12T07:15:00.008-04:00

Sunday was a very exciting day for us as we were able to bring Parker to the annual SCID picnic. We missed last year as we were in Italy. Parker did attend the previous year, but with strict limitations as he was just a baby and had just gotten out of isolation at Sick Kids. It was such a great day and something that we were really looking forward to attending. It is always such a comfort to be surrounded by others who have shared a similar experience with their child(s) and to see doctors who dedicate their lives caring for these very special children. Parker was very lucky to have his Nonna, Nonno, Auntie Franni and cousin William join him as well. Although it was a chilly day, Parker still managed to go in the pool and down a slide or two. He was not too impressed with the slides though as you will notice in one picture where his feet are actually in the air at one point. However, being the trooper he is- he still managed to put on a smile after and swim with daddy a little longer.
I would also like to take this time to thank the Barry's Bay and Eganville community who had a fundraiser for Parker this past Sunday. We were sorry to have missed the event because of the SCID picnic. However, we would like to sincerely thank everyone who helped organize and support the event. We are extremely appreciative for all the support and generosity that we have received from others. My dad was raised in Barry's Bay and it is unbelievable to me how a community could still reach out and be so generous to a family that has not been living in the area for years. Here are a few pictures from our day on Sunday.

Where has the time gone?

2008-08-05T07:12:00.013-04:00

First of all, we apologize for not having an entry in so long. To be honest, we have been trying our best to act as "normal" as possible within our boundaries. Parker continues to do very well. He is really enjoying this summer with his family and having the opportunity to spend as much time as he can with his cousins. Thankfully, everyone has remained healthy which has enabled us to be a lot more flexible with Parker and not remain indoors like we did all winter. Parker's numbers remain the same which can be discouraging at times. However, we are thankful that he has remained healthy with the numbers he has and we are hopeful that they will still continue to increase with more time. Today's entry is simply some pictures so that everyone can see what the little monkey has been doing. His biggest highlight has been swimming in his Nonna and Nonno's pool. We are very lucky that they agreed to keep the pool as clean as possible and not have anyone swim in it if they are sick so that Parker could fully enjoy it. I must say that he is a complete natural in the water and has absolutely no fear of it which I guess can be good and bad. Parker is such a thrill seeker that he really has no fear of anything... We thank everyone for continuing to keep Parker in their thoughts and prayers and feel so blessed that so many people still continue to check our blog despite our long delay in writing. We hope that everyone is enjoying a relaxing and healthy summer with their family and friends.

We are Blessed...

2008-06-03T11:17:00.004-04:00

Golfing "Fore" Parker was a huge success and I feel that the best way to express our emotions and heartfelt thanks is to share with everyone the speech I wrote for the event. We are truly blessed.....

A lot of people measure success by the job they have, the car they drive or the amount of money they have sitting in their bank account. Since the birth of our precious son, Parker, success has taken a much more significant meaning for our family. To us, our success as parents has been giving Parker a fighting chance at life and doing whatever it takes to ensure that this happens. We quickly learned as parents that although material things and luxuries are a bonus in life- they mean absolutely nothing if you do not have the health of your family members to share it with. From the moment Parker was born, he changed our life forever. Before we even knew Parker was sick, we did know that we would always do everything in our power to protect him and love him unconditionally.

When we found out that Parker was very sick it felt like our worlds had been turned upside down. We were two young parents with two good jobs. We were living in a nice, new home and were surrounded by family and friends who could not wait to play a significant role in our baby's life. It felt like our "perfect" world had fallen apart in a matter of seconds and completely surreal. The immediate sense of denial and that there was no way this could possibly be happening to us were initial emotions we experienced. Although this confusion, anger and sadness were upon us, we knew we had to be strong for this sweet innocent baby who was counting on us to help save his life. So that is what we attempted to do. With every ounce of our beings, we focussed on trying to make Parker remain as healthy as possible and infection free.

From the very beginning, Parker has always been a very special little boy- our miracle baby. He has beaten most odds and has been fighting a disease that most children succumb to by the age of 2. Besides his obvious problem of being born without an immune system, Parker is essentially a very normal and happy two year old. We are extremely fortunate that he does not experience any of the negative side effects such as hearing loss, neurological issues or failure to thrive that are often associated with SCID.

For those of you who are blessed to be parents you can relate to me when I say that there is nothing in this world that you would not do for your children. I would give up my life in a heartbeat for Parker and never think twice about doing it. We have tried to do our best for Parker. We both took a two year leave from our jobs as teachers and were extremely diligent in keeping Parker as protected as possible. However, this would not be possible without the support and love from people like you. We will never be able to express the gratitude and appreciation we have for everyone who has enabled us to help give Parker a normal life. We are so blessed to be surrounded by such positive energy, love and generosity. For this we will always be extremely thankful.

We would like to thank a few people who have made this event so successful today. First of all to Anna for planning this event to begin with. We are so appreciative of everything that you and our family have done for us. Even with your own health issues recently you have still done everything in your power to make sure that this event happened and we thank you and love you very much.

Laura- thank-you so much for offering to help Anna from the get go. You have been friends with Kevin for many years and the gift of a true friend is something that we are all blessed to experience in a lifetime. Your dedication and all the time you and your family and friends have put into this is very much appreciated.

Shannon- well you were always the big sister I always wanted and I have always looked up to you. Your support and love has proven that no matter how much time lapses amongst friends- a true friend will always shine through when you need it. Thank-you so much for everything that you and your family has done to make this day.

Josephine- We are blessed that Parker has such amazing godparents. Time and time again you always try to find a way to help keep us going. Thank- you so much for everything that you and Kyle do for our family.

Lastly to my parents and family for their continued love and support and all of the hard work they put into the success of this event as well.

I know that there are many other people who have helped by either selling tickets, graciously donating items or volunteering their time to make this day so special. So many of you traveled a great distance on a Sunday of all days to show your support to our family. We sincerely thank each and every one of you for sharing in this day and making it possible.

May 18th marked a very special day for our family- one year since Parker had his gene therapy. Although, we still have a ways to go, we do know that Parker will eventually live a very normal life. This is all we have ever wanted and prayed for and we will continue to ensure that such a brave and precious little boy fulfills every dream that we all have for him.
Thank- you so much.

Happy 1 year Anniversary Parker!

2008-05-21T13:26:00.011-04:00

I would like to begin by apologizing for the long delay in an entry. We have been so busy for the past few weeks and have literally had very little time to sit down and write a blog. I know that there are many people who are very faithful in reading about Parker and genuinely care and worry when they have not seen an entry in a while, so I apologize for that.
We just returned from Italy on Sunday night after a two week follow up visit for Parker. We had a wonderful time in Italy and it was so nice and comforting to see so many familiar faces again. Our travel to and from Italy was a little more eventful this year with delays and stolen luggage. However, we are now home safe and with a lot of encouraging news!
Parker is doing well clinically and is definitely responding positively to the gene therapy treatment. We are still waiting for a lot of his bone marrow results to come back, but his doctor in Italy remains very optimistic about Parker and the progress he has made to date. Although, Parker's numbers remain nowhere near normal, the function of his cells is excellent which is extremely important. This past year has been very difficult for us on many different levels and it was such a great feeling to hear some optimistic and encouraging news about Parker. Dr. Aiuti has reduced some of the restrictions we have been practicing with Parker which is wonderful news. For the first time, Parker has actually been given the green light to play with his cousins and friends as long as they are not sick with something that could potentially harm him. Therefore, we must still continue to protect Parker, but unlike before he is actually allowed to see other children as long as they are well. This is fantastic as Parker is at an age now where he needs to interact and socialize with children developmentally. With time, more conclusive results and further improvement, Parker will eventually be able to lead a very normal life which is all that we care about. We have time and as long as Parker will be o.k then we are prepared to do whatever it takes to ease his transition into living a normal and healthy life. May 18th marked Parker's one year anniversary of having gene therapy. It is crazy to think that one year has gone by. We are so thankful and blessed for all of Parker's doctors who dedicate their time and life to children who are severely immune compromised. They are such incredible people and we will be forever grateful for everything they have done for our son and us as parents of a sick child. Dr Aiuti is such a brilliant man and we could never thank him enough for essentially giving Parker a fighting chance at life. Sick kids is the most amazing hospital and we have so much respect and gratitude for Parker's doctors and nurses. We are so fortunate to have such an amazing facility close by lead by such an incredible medical team.
I would like to also thank everyone who has supported us to date through this journey. We are extremely lucky to have such an incredible support network and to be surrounded by so much love and positive energy. So many people have made such a difference in our life and we thank everyone who has helped us financially or emotionally for your support.
There are still some tickets left for the golf fundraiser being held on June 1. If you are still interested, but have not purchased tickets yet, please e-mail golfingforparker@gmail.com before it is too late. This is going to be an incredible day!
I am leaving you with some images from our trip. Please continue to keep Parker in your thoughts and prayers. While we were in Italy we met our friends from the United States and their son who will be having his treatment in the next couple of weeks. We had such a wonderful time with them and wish them all the best as they begin this next chapter of their journey. Please keep them in your thoughts and prayers as well.
Happy Anniversary Parker. You are loved by so many people on so many different levels. You will never know just how much you have touched the lives of so many. God bless!

Ciao!

Sunny Days!

2008-04-18T06:52:00.005-04:00

It's amazing how the change in weather can drastically improve one's overall mood. Parker and I have been taking full advantage of all this beautiful weather we have been granted with this week. Having been cooped up and indoors for the winter, it is like a whole new world for us. Parker just loves the fresh air and going for walks. We have been going for some nice long walks each day and it has been great for Parker to see so many new things. He loves to point at things along the way especially mail boxes! Last night we played outside while daddy barbecued for us. This was a highlight for Parker. He absolutely loved being in the backyard and definitely expended a lot of energy before bed! I think he particularly liked hearing the voices and laughs of children in their backyards as well. It often makes me sad when Parker sees other children because he is so memorized by them. It is almost like he goes into a trance as he stares at them and laughs at their actions. Although he is never around little people his age much, he absolutely loves to be in their presence. When I think of the day that we are given a green light for Parker to be a child, it brings tears to my eyes. I desperately want him to enjoy every part of life that a two year old should. I know that he is going to be such a caring and special friend to so many people. I hope that his energy, happiness and laughter are qualities that he continues to carry with him as he continues to grow!
We are hoping to get Parker some sort of activity set to play on outside very soon. It is just too stressful to try and take him to the park and carefully lysol all areas of a swing before he is able to use it. It is also very difficult to gage an optimum time to take him. I also find it taxing when people watch me as I lysol down his swing and ask me why I am doing that. I know that people are genuine and have the best intentions and do not mean anything negative when they are asking or staring- they are simply curious. However, sometimes I feel like I am at the point where I just don't want to have to explain why I am doing it because then it makes me sad. It makes me feel sad that my sweet, precious little boy has to take so many precautions just to go on a swing that is second nature to most children. Parker absolutely loves going on the swing. He laughs the entire time and has a smile that never fades and then of course cries when he has to go home...
On Monday, I had a special treat and went into my work for the first time in almost two years. I really miss my job. I absolutely love teaching and have always expressed that I cannot wait until the day when I can eventually go back. I did not really realize just how much I missed it until I went back. There was such comfort going back to such a familiar place, surrounded by colleagues and friends who know and care so much about Parker. It made me feel so good to know that I have so much support at my work. Everyone was telling me how they keep up with the blog and genuinely expressed their hopes that our family would soon be able to live a "normal" life again. I want to thank everyone for their kindness and support. I had a fantastic visit and cannot wait for everyone to eventually meet Parker one day!
Lastly, I would like to remind everyone that tickets are still being sold for the golf fundraiser. If you are interested in purchasing tickets then please e-mail the site soon. Parker's Nonna and friends have been working very hard to make this event successful and I know that it will alleviate a lot of stress when they can focus on other aspects of the fundraiser besides ticket sales. Individuals and families have also expressed interest in sponsoring holes, so I also wanted to emphasize that it does not have to be a company to do this. Anyone can sponsor a hole at the tournament. We sincerely appreciate everyone's support to us. It means so much to us and words could never do justice to express our sincere gratitude.
For tickets, to sponsor a hole or donate a prize, please e-mail:

golfingforparker@gmail.com

We hope that everyone has a safe and beautiful week-end. It is crazy to think that in such a short time we will be back in Italy. Please continue to keep Parker in your thoughts and prayers as he soon approaches his one year anniversary of gene therapy. He is a fighter!
Ciao!

Amazed and Blessed

2008-04-04T15:39:00.003-04:00

Sometimes when I look at my little boy I am just so amazed by him and his journey so far in life. Lately, I have been thinking a lot about Parker, his life and all of the obstacles he has been challenged with and overcome. As a parent, there is nothing in this world I would not do for Parker. I love him with every ounce of my being and it is his precious smile, infectious laugh and zest for life that make me so proud to be his mommy. Parker is the strongest person I know. Whenever I find myself feeling down, I try to remind myself that it is Parker who has truly experienced all this pain and he is always happy. I am not quite sure how he does it, but I am so grateful that he does. It is amazing how a little person who has undergone so much in such a short life can always be so happy and content with life. Perhaps, this is because he does not know any different. I believe that this is simply his personality and that it does not take much to make him smile, laugh and be silly.
We are in the process of arranging our return visit to Italy for Parker's one year follow up tests. Although we are looking forward to visiting a place which was our home for 7 months, I am not looking forward to some of the invasive tests that Parker will have. It has been so nice only going to Sick Kids monthly and not having to watch Parker get so stressed out when they access his catheter. There is nothing worse than watching your child try to defend themselves as they look at you and wonder why you are not helping them.
Although, our journey with Parker has been extremely difficult, I do know that we are extremely fortunate and blessed that Parker is doing so well and thriving. He truly is a miracle and I try to count my blessings because our life could have been so much worse if Parker was not diagnosed when he was.
Life is precious. We all know this. However, sometimes it is just so easy to get caught up with life that we miss what we are truly living. I find myself doing this and that is why lately I try to just sit and watch my son as he discovers something new because I feel fortunate to have this opportunity with Parker- something which many parents do not have.
I am a worrier. Those who know me can attest to the fact that I worry about everything. Having a sick child has not helped this. However, I know that if I continue to worry about everything that could go wrong with Parker I am going to miss the present and all I can do is put my faith in a higher source that my family will continue to be protected and Parker will live a normal, healthy life when he is given the chance.
Reading this blog, I can see that it is more of a therapeutic entry than anything else. Some days, I just feel the need to write whether it makes sense or not. Today was one of those days and I guess my whole point is to enjoy today, enjoy the present and enjoy being surrounded by those who you feel blessed to be with and who amaze you too!
Ciao!

Not much new to report...

2008-03-25T13:29:00.003-04:00

Well we must apologize for not updating the blog regularly lately. It is much more difficult with daddy working and mommy trying to occupy the little monkey. We had a wonderful Easter week-end or Pasqua as it is called in Italy. It was so nice to spend quality time as a family and we took advantage of our nice long week-end together. We hope that everyone reading also had a wonderful holiday week-end too! Yesterday was also a very special day for us as my husband and I celebrated our third anniversary and were actually able to go out for a nice dinner thanks to Nana and Gaga! We were unable to celebrate our first two anniversaries together for obvious reasons, so it was a special treat to do something nice together on our special day.

It is hard to believe that we will soon be getting ready for our trip back to Italy so that Parker may have his follow up tests. It is surreal at times to think that it has almost been one year since Parker received his treatment. When I think of everything we have accomplished and been through together as a family it really is mind boggling! We just pray that Parker will continue to do well and respond to the gene therapy positively. Each day that passes is one day closer to Parker living a much deserved normal life and that is very exciting. I am sorry that this is so short, but I must go and do a million things before the little guy wakes up from his nap. I will make sure that there is a blog sooner than later for everyone to read.

Ciao!

A Ride Home

2008-03-05T07:20:00.003-05:00

It has been quite some time since I last wrote an article. Today, I find myself on the train on route to home from work. Work has been going very well, as I enjoy applying what I have learned that last couple of years. That said, there are definitely some things that I really miss about being home.

It is hard to believe how much Parker has grown and developed over the past couple of months. During the week I don't normally get home before 7pm, and as a result my time with my son is extremely limited. There are days when Parker is in bed by the time I get home, yesterday being one of those days. I could probably count the number of hours I spend with my son from Monday through Friday on one hand. I know this is probably very normal for most fathers; however, it is all very new to me and Parker.

This morning on the train, I called homed while waiting at Union station. The train was not very busy so I asked to speak with Parker since I knew he was fascinated with the phone. Although he normally just places the phone to his ear and listens attentively without responding, today we had a conversation. Every time I would ask him a question he would respond by rambling about something. Of course, I had no idea what he was saying but it was obvious to me that we were having our first conversation on the phone.

I also know it has been very difficult for my wife since I have returned to work. With it being extremely difficult to leave the house with Parker without someone else to help ensure he has not touched something that could get him sick she does find herself bound to the house for most of her days. We have been lucky, as her parents will usually give her a break for one to two hours to get some things done during the day.

Then there are the hospital days. There have been three occasions since I began working again in which I have not gone with my wife and Parker to the Hospital for Sick Children in Toronto. Parker's Gaga has been kind enough to take my place but I would much rather it be me with my wife and son during these difficult days. Thank-you Gaga for taking such good care our family!

The train. I figured the ride to work on the train each day would not pose much of a problem. But, as the man across from me coughs uncontrollably he reminds me that with each ride to and from work I place my son at risk my potentially becoming covered in germs. It has only been a month and a half but I have already been sick once. There is only so much hand washing can do. With that I have been contemplating driving to work each day. It would guarantee me a seat and ensure I do not get any unwanted germ-filled droplets projected toward me from the person a couple seats over who does not know that you don't get an award for having the loudest sneeze.

I should be arriving to my station shortly. Today is one of those special days where I will get to see my son for more than an hour when I return home. For that reason, I better sign off and make my way to the door so I can be one of the first off the train. The last thing I want is to be stuck on a crowd as the mob tries to make its way down the escalator.

Golfing "Fore" Parker

2008-02-27T21:33:00.008-05:00

There are often many obstacles thrown at us in life. Some we are able to understand quite clearly and others often take a lifetime to try and figure out. If there is one thing that I have really learned to appreciate through our journey with Parker's disease is that everyone has a story. Some share their battles and struggles openly while others share pieces because the pain is often too fresh and the heartache too painful to put into words. We have tried our best these past two years to remain as positive as possible and to make Parker's life as normal as it can be given our situation. As parents, we have made many decisions to create a lifestyle for Parker that would be safe despite what it would mean on many different levels. These decisions have consequently lead to many changes both on personal and professional levels. We have adjusted our lifestyle and routines in order to create the most conducive environment for our son and for this we will never have regrets. As many of you know and can even relate too, having a sick child has a tremendous financial impact on a family unit. One day you are both doing well in your careers and the next you are both on leaves stressing and worrying about how you can possibly financially survive such a traumatic ordeal. We have been very fortunate with the support we have received from family, friends and strangers throughout this entire process. It is an amazing feeling to know that there truly are so many generous, good hearted people who truly want to help others. We could never thank people enough for their support whether it be emotional or financial. Support on every level is what has allowed us to cope with and survive this struggle to date. I am sure people can appreciate how horrible it is to be in a position where you need to ask for help. We never imagined our life like this. Pride can often be our worst enemy because it is so difficult to open up to others about issues which are so personal and upsetting. However, sometimes we are forced to do this and as a result people are often very receptive and genuinely want to help. Family and Friends are organizing a fundraiser for Parker on Sunday June 1, 2008 called Golfing "Fore" Parker. If you are interested in buying tickets, selling tickets or helping with the event in any way then we would greatly appreciate it. We are also looking for companies to sponsor holes, donate prizes and/or auction items. If you feel that you would be able to help in this way then that too would be extremely appreciated. The information for the event is as follows and I will leave an e-mail address if anyone is able to help out in any way. We thank everyone in advance for their continued support to our family and we hope to see everyone there! (Daddy hopes to write an article for everyone soon and be sure to check the Toronto Star this week-end for another article on Parker!)

Date: Sunday June 1, 2008 with a 1pm shot gun start
Where: Four Seasons Golf Club www.2golf.ca
Price: $125 which includes 18 holes of Golf (scramble format, 4 players per team only)
Shared use of a power cart - 2 persons riding
A starter pack, including tee, ball marker, green repairer,etc.
Dinner: Served buffet style with choice of:

9oz Sirloin Steak with sauteed onions and mushrooms

1/2 BBQ Chicken or 8oz Chicken Supreme

Vegetarian Lasagna or Fish

Served with Salad, Roast Potato, Medley or Mixed Vegetable, Assortment of dinner rolls

Assortment of Dessert Cakes with Coffee or Tea

Dinner only: $55.00 per person (76 tickets only)

For more information, to buy or sell tickets or help with this event, please e-mail:

golfingforparker@gmail.com

Bye, Bye, Bottles!

2008-02-20T20:24:00.006-05:00

It's amazing how when a child reaches two, parents suddenly start to think of all the things that need to be accomplished within the next year. For us this means a few important things- saying good-bye to bottles, changing to a twin bed and toilet training. Parker has always loved his "ba". I often tell people how it is quite common for Parker to go and sit in our upstairs loft and call for his ba when he has had enough and just wants to go to bed. He has never taken a soother, but his bottle has definitely been an item of security and enjoyment especially at bed times. A couple of weeks ago, I decided to stop his afternoon bottle and have him start using a "big boy" cup for his milk. This has gone quite well. We have begun a routine where Parker sits with me and has his drink while watching an episode of Little bear. Shortly after, I put him to bed and generally he falls asleep well. Night time has been a little different. I think that this is a combination of not seeing daddy much and not having his security item with him. The past couple of nights he has cried more than usual and wants to be snuggled before going to sleep. Overall, I am very happy with how well he is making this major adjustment. I knew that it would not be easy and I am not sure if there is ever an easy time to stop a routine and end something which has been a major level of comfort for a child's first two years of life. My goal was to have bottles finished prior to our return trip to Italy and I am confident that this is a goal that Parker is successfully accomplishing with a little help from mommy and daddy!

This past week-end was a very busy week-end for us as daddy was in a hockey tournament with family and friends. It was so nice to see my husband so energized and excited for something again. Between him and Uncle Mikey, I know that another tournament will soon be approaching and it makes me very happy to see the bond that they share as brothers. It was so nice to have the opportunity to do something fun with both of our families and better yet- to win their division. Way to go, champs!!

Today was a special treat for us as my friend Sarah visited us again with her precious newborn son. Parker and I want to thank-you very much for coming to visit us last week and this week. Maybe this can become a weekly thing? Parker absolutely loves baby Reid and was so excited when he saw them again. He kept staring at Reid and laughing. It is going to be so wonderful when Parker can play with all his cousins and friends because he is such a lovable and kind little boy. His energy and zest for life are truly remarkable.

The Toronto Star will be doing another article on Parker in a few days (possibly Saturday's paper). We have always been extremely happy with every article that they have written and want to thank them very much for continuing to follow Parker's journey.

Lastly, I want to end by thanking a couple of people for some fundraising that they have done for us. My husbands aunt (Kelly) recently did a spice fundraiser for us over the holiday season. We want to thank her and everyone who supported our family by either selling spices or buying them. It is very much appreciated. We would also like to thank Yorkview Public School for their ongoing support for our family. They have started a "Pennies for Parker" fundraiser at their school and we want to thank everyone involved at the school as well as the students for their generous contributions. It is the support we get from others both financially and emotionally that enables us to get through our most difficult days and for this we will always be extremely thankful and grateful.

Parker fast asleep. He always looks so precious when he is sleeping...

Daddy is the best goalie EVER!

Parker saying hi to his new pal baby Reid!

Excellent News!

2008-02-07T13:31:00.000-05:00

Well, we continue to try and occupy our time the best we can without daddy. I must admit it is very difficult and we miss him so much. This has been a tremendous change for our family and we are trying to adapt the best we can. We know it is very hard on daddy and not a minute goes by that we don't wish we could all be together.

Although, things have been different for us, we did receive some very encouraging news from our doctor a couple of days ago. Last week, Parker had blood drawn to check the function of his T cells. We have all been very pleased with how well his lymphocytes have been rising and with that the doctors wanted to ensure that they are actually working. We are thrilled to report that when Parker's T cells were tested, they do in fact measure to that of a normal control group. Although, Parker's numbers are nowhere near normal yet, it is extremely encouraging to know that the T cells he does have are actually functioning. This was the best news we could have received and the best possible scenario for where we presently are post gene therapy.
It has given us as parents more hope and assurance that the gene therapy is actually working and for this we are incredibly happy. Now, we will continue to do what we always do- protect Parker and make sure that he is never in danger of being exposed to unnecessary germs which could potentially make him very ill.

We are really looking forward to meeting with Dr. Aiuti and the medical team when we return to Italy in the spring for Parker's one year follow up. It is hard to believe that in a few months we will return to Milan. We are actually really looking forward to our trip. We have been missing Italy very much lately. The lifestyle we created and our daily routine are things we have begun to really appreciate since our return to Canada. As strange as it may sound, it felt like we lived a much more "normal" life in Italy despite the stress we had. I am sure that when the warmer weather approaches, we will be able to do a lot more and establish a nice routine here. I guess it is more the boredom and lonlieness of being confined to our home all day that can be tiring and draining.

Anyways, staying on a positive note, we are extremely appreciative of the medical team that we have in Canada and Italy and are forever grateful to both teams for giving Parker a fighting chance at eventually leading a normal life. I have no doubt that all our dreams are about to come true! I would like to leave you with a few pictures from our baking session yesterday. Parker had a blast and it is something I am going to try and do a few times a week with him. Don't mind the pajamas- who says the Christmas spirit can't overlap with Cupid!

Baker Parker in action. Mixing is a very important step in creating the Perfect muffin!

Are you sure this is what it is supposed to look like Mom? I am not sold on this yet!

Parker smells everything before even considering taking a sample!

O.K that was great. When are we baking again?

Changes....

2008-01-30T07:28:00.000-05:00

Well a lot has happened in our daily routine lately. Daddy got a short contract job and has therefore been extremely busy. We are so happy and thankful that his hard work has finally paid off and want him to know how proud we are of him. My husband is one of the most dedicated, diligent workers I have ever met. Although this is only a temporary position, we hope that this experience and his strong work ethics will open the door to more possibilities. As I am sure you can all imagine, this has also had quite an impact in our daily lifestyle and routine. It is incredible how much you depend on someone and lean on them when you go through a life changing experience such as this. I know that this has made us stronger as a couple and although Parker's disease is a daily battle, he has had both of his parents at home with him for over 18 months. We share a special bond with Parker that is very difficult to even try and put into words. This transition has been extremely difficult for Parker as well. We both miss daddy very much and the energy and laughter that he brings into our lives. Parker has not been going to bed at night very well because he wants to make sure that Daddy is still home. For the past couple of nights we have let him stay in our bed for a bit to watch t.v before saying ciao! Although, he will not show it, I know that this has been very difficult for him. We are so blessed to have him in our lives and want him to know that we appreciate everything he is doing to try and make things a little better for us.

Last week one of my brother-in-laws colleagues held an event where she donated the proceeds to Parker. We would like to thank-you so much for this and want you to know how much your contribution and support means to our family. I am so sorry that it has taken this long to thank you on our site. Although, my husband has found short term employment, it will continue to be extremely financially straining on us with the loss of my income and the mere fact that we have both been off work for so long to care for Parker and provide him with the safest environment possible. A loss of income for 18 months for both of us has given us a tremendous amount of stress and worry. We sincerely appreciate all of the help we have received and are extremely grateful of any help we may get in the future so that we may continue to protect Parker the best that we can. If anyone has ideas or is willing to plan an event then we are very appreciative of this too.

Parker had his visit at Sick Kids on Monday and we are thrilled that his lymphocytes went up another 100 to a total of 870 now. The rest of his numbers remained relatively the same which makes us so happy. Our son is such a fighter and we count our blessings every day for the joy that he brings to our lives. I honestly feel so blessed to have a son who is so amazing.

Well, I must go and get ready for our day. The little monkey should be waking soon and ready to go full force. A special thank-you to Nana and Gaga who have been such a tremendous support to us. I am so lucky to have such amazing, supportive parents and we love you very much. Thank-you for your daily visits and helping me out so much with our new adjustment.
Ciao!

A 2nd Birthday Blast!

2008-01-20T14:22:00.001-05:00

Mommy is just writing a quick blog today to share some birthday pictures from yesterday. It was such a special day for us and we want to thank everyone who was a part of it for making it so memorable. Parker had such an amazing time and wants to say a special thank-you to his daddy for making him such a fun cake. Parker already knows that his daddy is an amazing cook, but now a cake maker too! A Pablo cake last year and a Cars cake this year- who knows what next year will bring. Parker will definitely be able to choose and daddy will definitely make it happen. Thanks again everyone. We needed such a "normal" day!

I want to make cakes just like my dad when I am his age!

Wow! Can you believe that this is my cake. Isn't my dad the best!!

I figured I should let daddy help me with the candle since he did such a fantastic job!
This really is too cool!

Finally a moment to myself to enjoy all this chocolate!

Just having a moment with Nonno!

Auntie Frannie let me eat all the chips I wanted. I hope she stays like this forever!

Uncle Kyle is right up my alley- some TLC with the TV!

We thank our lucky stars every day for the gift of Auntie Natalie!

Even little guys need some down time the next morning!

Best Friends Forever!

Parker's Playtime with Jett

2008-01-17T08:19:00.001-05:00

Parker got to spend much of yesterday with his cousin Jett as Uncle Michael and Auntie Katie visited their new niece. Parker always enjoys his playtime with his cousin.

I hope when I grow up I have hair like that.

Parker posing for the camera. He is one happy little boy.

Jett, after having a big lunch. If Parker ate like him, life would be much easier during meal times.

Is it a hug or a tackle? You be the judge.

Parker got Widgets for his birthday from mommy and daddy and he loves to share.

Mommy posing with cousin Jett. Don't be jealous Parker.

Parker and Jett working on their airplane mechanic skills.

Parker and Jett discussing a plan to get the taller folk to put on the Backyardigans.

Parker showing Jett where Gaga hides him gum.

Happy 2nd Birthday Parker!

2008-01-15T17:29:00.000-05:00

Today, Parker turned two.

We are extremely happy to report that Parker will be celebrating his birthday with 1230 neutrophils and 770 lymphocytes. Here are some images from today. Check back on Saturday for images of his birthday party.

Life in 2008

2008-01-09T16:22:00.000-05:00

So, things have not changed too much for us in the new year. My wife and I still spend most of our time at home with Parker. She plays with him most of the time and I spend much of my time preparing for a career in Java Development.

I have felt a little under the weather the past couple of days, so as a precaution I have left my wife and son alone. For the most, I have spent my time in bed reading. I even made a decision to not play hockey tonight in hopes that I will be better by tomorrow. Vitamin C, water, ginger ale, and Cold FX. That has pretty much been my diet.

Lymphocytes and Neutrophils have pretty much remained the same over the past month. Parker continues to have 600 lymphocytes and around 1100 neutrophils. We really wish that his neutrophils would return to a normal level as was expected after gene therapy but they still sit at the same number they have been 30 days post gene therapy. We will have to wait and see if they increase as his metabolites decrease further.

Parker has continued to be a happy little boy. He does have some new words, although his speech is hardly something to get excited about. That said, he does continue to strive in many other ways. He absolutely loves puzzles. He has a wooden puzzle of the letter of the alphabet that he can put together quite quickly. He loves playing with trucks and cars. He got a Go Diego Go jeep from his Nana and Gaga for Christmas that he loves getting in and out of.

He is strong. We call him Bam Bam. You know from the Flintstones. He loves lifting everything up over his head. The basketball net he got from Christmas he carries across his playroom on a regular basis. His bed mattress? If you put it on the ground he squats in front of it, picks it up, walks forward and then flips it over. All with that grunting noise that guys make when they are lifting up something heavier than they should.

Lastly, I would like to thank anyone who put us in their prayers or made a donation over the holidays. Things have started to get harder financially around here and we really appreciate any help that we get. Thank- you.

Merry Christmas - Parker's Second Christmas

2007-12-26T16:55:00.001-05:00

I would first like to wish everyone a wonderful holiday season. Secondly, I have to say that we had one of the best couple of days in a long time. Dr. Aiuti emailed us Christmas Eve to let us know the results of Parker's six month follow-up of his gene therapy. The results were positive with some numbers increasing and other decreasing since September but in the end he said that Parker is pretty much inline with the other patients that did well. For now, we will continue going to Sick Kids every two weeks for IV and to get his latest numbers. His most recent results had his lymphocytes around 600 and his neutrophils still close to 1200. Parker's liver enzymes were very slightly elevated and just above the normal range so we will be looking for those to decrease at his next examination. If they continue to increase they will do an ultra sound to see if there is anything abnormal. Most likely (and hopefully) it is just a fluctuation.

On Christmas morning Parker opening his gifts. This year was much different that last year in the sense that it was less about the paper and more about what was inside. When he would get to a gift he really liked he would repeat "I want, I want" instead of going to the next wrapped gift. Parker loved all of his gifts and daddy is still putting things together the next day.

We followed the gift ceremony with Brunch with Auntie Katie, Uncle Michael, Jett, Nana and Gaga. It was another reason to stuff ourselves with food. After that, it was off to Auntie Katie's families for Christmas dinner. I have to say that the meal was absolutely incredible and it was nice being able to spend Christmas with family and friends. Parker also really enjoyed himself. It is nice being able to bring Parker with us when we do things like this. With no one sick it made it much easier for us.

I have uploaded quite a few images for everyone to see. Lastly, thank you to Canada AM for doing such a wonderful segment on Parker and his immunodeficiency. We really appreciate the time you took to share Parker's journey with others.

Parker and Jett working together to open up another one of Parker's gifts.

A Great Christmas Holiday.

Parker absolutely loves the Backyardigans!

Christmas Brunch. Yes, we have left overs this morning.

Parker going through his stocking from Santa Claus.

I think the Leafs could use another good player.

Parker and Gaga watching the movie "Cars".

Mommy and Parker on Christmas morning.

Parker and Jett's First Christmas together.

A Gift From Auntie Natalie and Uncle David.

Parker Update

2007-12-10T18:44:00.000-05:00

I know. It has been over a month and I have not written. I do apologise but I have been doing my best to try and make life as normal as possible. When I am not studying I try to spend as much time with Parker and my wife as possible. That said, I did write my exam about a month ago and scored 97% so I guess my studying has been paying off.

I am sure that most of you have been wondering how Parker has been doing. Well, his neutrophils have started to increase again. They are still under 1500 but they have steadily been rising the past month. But, more exciting is that Parker's lymphocytes have been increasing since we have come home. Most recently they hit 700. Normal for a toddler would be close to 4000 but since we know that Parker is making the cells himself and they were usually 100 – 200 while in Italy we are quite excited to see him recent results.

We are currently waiting for Parker's six month post gene therapy results to come back from Italy. To be honest, it has been three weeks since his blood samples were sent to Milan and I was planning on waiting to update the blog when we got the results but my wife has been giving me a hard time for not writing that I decided to sit here while Parker watches “Cars” and I cook some focaccia.

Mom is currently with Nana and Gaga in Brampton. Parker's great grandmother broke her leg a few days ago and she is having surgery tomorrow to attempt to fix it. I am sure everyone knows that anytime a 90 year old undergoes any type of surgery there is a good chance it may not go as planned. I ask everyone to place Nana's mother in your thoughts and that she pulls through tomorrows surgery.

As soon as I have more information about Parker I promise to update everyone.

Halloween Fun!

2007-11-01T14:30:00.000-04:00

Sometimes it is very difficult to put into words just how much it means to us when we have a "normal" day. Yesterday was extremely special to us because we felt like every other parent who allows their child to participate in Halloween. Parker had an absolute blast from start to finish and collected quite a bit of candy with his charm. Parker's trick was to always offer everyone some of his candy before receiving more. The end result- quite a few treats for such a deserving little boy. Like always, we took our precautions and made sure that we sanitized all of our hands quite frequently. However, sometimes we all just need a little taste of normality no matter how long it lasts. Here are some images of our little monkey on his first Halloween in action!

Better Late Than Never!

2007-10-31T12:53:00.000-04:00

It has now been almost three weeks since I last wrote and I know that there are probably a few people who are not too happy about that. I have found it very difficult to write lately. I can make excuses I guess but to be honest the main reason I have not been writing is that I am trying to do whatever I can to act as if we have already won the battle against ADA deficiency. The battle is far from over and even further from being won but I try to do whatever I can to be as normal as any other family.

I have been off from work for over a year now and with everything we have gone through I want normality. I have not written my exam yet but am scheduling it for either this Friday or Monday. Once that is done, I hope to find a position shortly after. It will be nice to actually have an income once again. As you can imagine, the financial stresses that come with this disease have been overwhelming at times. That said, we are extremely appreciative of everything that people have done for us to ease that burden. We have had a couple of people who have offered to do a fundraiser for us and we really appreciate this. It will definitely be much easier for us if we can somehow try to eliminate some of the financial stress when there are so many other stressful things to deal with as well. Although I am planning to go back to work soon, a return date for my wife remains unknown until we see Parker's numbers reaching a stable level. I know how much my wife would love to return to her teaching job, but it is a difficult profession for someone who has a son who is severely immune compromised.

Now, that I have gotten all of my whining out of the way I shall update everyone on how things have been for us the past three weeks. I shall do it in the fashion that many of you have become accustomed to lately and break the article down into subheadings.

Parker's Neutrophils and Lymphocytes
I figured that I should begin with the most important. I had mentioned that Parker's neutrophils had dropped the last time I wrote to under 1000. We had hoped that when we made our next visit to Sick Kid's we would see a correction and Parker's neutrophils would have increased to over 1000 again. Unfortunately, that was not the case. We shocked when Parker's blood came back just over a week ago and his neutrophil count was 640. Shocked enough that we actually went to speak with Parker's immunologist at Sick Kids.

No one really knows why Parker's neutrophils dropped. I am confident that it does not have to do with his metabolites or his engraftment but that does not mean that the doctors do. I had emailed the doctor in Italy and he agreed that he was not worried but did want Parker's blood tested again this past Friday. Parker's neutrophils had increased slightly to 750. Now, this was not exactly the increase we were hoping but at least they had not dropped for a fourth consecutive time. We are not scheduled for another test until a week yesterday so we just sit back and pray that his numbers increase again.

The good thing is that Parker's lymphocytes increased. The last two test had them at around 400. This is very encouraging and much higher than we had anticipated at this time. The lymphocyte count can fluctuate quite abit so we may see them drop again on Monday.

Our Attempt at the Toronto Zoo
We decided to get a pass to the zoo so that we could do something with Parker that we thought we all could enjoy. On Sunday, we made our first attempt at going to see the animals but after about 15 minutes it started to rain and we figured we should call it quits and come home.

Then, on Monday, we figured it was a nice day and we should once again try and go to the zoo. First, we had to make a trip to my parents to pick up some clamps so we could repair a door that Parker had broken. Just prior to pulling out of my Parent's driveway I noticed that one of my tires had gone flat. So, after replacing the tire with the donut I had in the trunk we spent the rest of the morning getting the tire repaired instead of going to the zoo.

Yesterday, as we pulled into the zoo parking lot we realised that we had not brought Parker's stroller and that without it it would be a very difficult morning at the zoo. That said, we were determined to go to the zoo, so we just went home to get his stroller.

I would like to say that Parker was amazed at the animals, but he was not. For almost two hours we pushed him around the zoo showing him the elephants, tigers and giraffes. But all that Parker was interested in was looking at the leaves we rolled over while pushing him in the stroller.

Close to the time that we left, we decided we should let him walk around for a bit. Parker loved it. Leaf after leaf he picked up and through into the wind. Unfortunately for him, we had to pick him up so he could go home for his nap. The little monkey cried and cried as I carried him under my arm to the car. Every once in a while, as we passed a leaf I would stop and lower him so he could pick it up. By the time we got to the parking lot the leaves were gone and we faced the task of trying to get our upset son into his car seat. Everyone who saw him must have thought he really loved the zoo.

Coffee Time!
This morning Parker decided that he would also like to have some coffee with daddy. As I mentioned several times, Parker is one quick little monkey. This morning I had turned around for one second only to see Parker grab my coffee mug and dump it all over our cashmere coloured carpet in our bedroom. I quickly called Tracy and told her that she needed to grab the little guy so that I could begin cleaning up the mess he had created. I have now tried a couple of times to scrub the area clean, but there is still a definite finishing touch to our carpet now!

We would like to wish everyone a very safe and happy halloween. We are planning to take Parker to a few houses so that some of our family and friends may see the little guy in his extremely cute costume. Parker's costume is very fitting for what we always refer to him as- our little monkey!

Happy Halloween Everyone!

I Know, I know.

2007-10-11T13:52:00.000-04:00

Yes, I know. I have not written an article in a long time. My only excuse is that I am trying to get as much studying done as I can so I can start working again as soon as possible. When I am not studying I am chasing Parker around the house. That said, here I am. Sitting down at the computer in blogger, ready to write my next post. As many of you have been come accustomed to I will use the subheading format that makes things much easier for you to read.

First Trip Back to Sick Kids
This past Tuesday marked our first trip back to Sick Kids hospital in Toronto. We will be making trips every two weeks so that Parker can get his IgG, Pentamadine in addition to getting his blood tested. On Tuesday, Parker had an infusion of Pentamadine through the line inserted under his skin on the right side of his chest. It went extremely smoothly and only took one hour to complete. In Italy, Parker received Pentamadine through a ventalator but we always found it difficult to administer since he fought the mask for the whole 10 minutes. We always felt that we were getting more of the medication than he was. For that reason, our immunologist at Sick Kids decided that administering the medication through an IV was the best solution and the norm for them with children under the age of five.

Parker also got to use the big boy scale for the first time. You know, the one you step on. When they wheeled it in, Parker was very happy. He walked right up to it, stepped on it all by himself and waited for the display to yield a reading. How much did Parker weigh? 13.7 kg. In pounds, that is 30 lbs 2.2 oz. What a big boy or little monkey has become.

Prior to starting the Pentamadine (precautionary medication for PCP pneumonia), they took a vile of blood so that they could complete a CBC (white blood differential among other things). We of course were anxious to get the results of Parker's blood test in hopes that he would have higher number from when he left Italy. Unfortunately, he did not. Parker's neutrophils had dropped to 1000 and his lymphocytes are currently 180 cells/unit of blood. We are used to his neutrophils fluctuating over the past couple of months but were hoping that they would increase to close to 2000, a number that he had almost reached a week before leaving Italy. As for the lymphocytes, we know they take some time to increase so having 180 lymphocytes is not surprising and is similar to what we experienced from Parker's blood results in Italy.

What does this mean? It mean that Parker will continue to be protected in such a way that we can ensure that he will not get sick but will be able develop in such a way that he will be ready to enjoy Kindergarten like any other four year when the time comes. Who does he see? He sees his grandparents, as long as they are not sick. He sees his aunts, uncles and our friends, as long as they are not sick or have a child that is sick. He can play with one child at a time as long as they are not sick, have recently been sick and are not attending school or have siblings that are going to school. And even then, this is done in an extremely controlled environment. Which really limits the number of children he can be with. Lastly, he does not get to be around large groups of people without being covered by his shield.

To be honest, we have gotten used to the fact that we are very limited in what we can and cannot do with Parker but that said we are very knowledgeable about how germs are transfer ed which allows us to do more now than we did prior to the gene therapy. That said, we wish we did not have to live this way.

Thanksgiving
Last weekend was Thanksgiving here in Canada and we spent Sunday afternoon at my parents as Nana and Gaga watched Parker at our home. As I had mentioned above we were unable to bring Parker because of the number of children attending. That said, it was extremely nice being able to spend Thanksgiving with family this year since last year we spent it at home alone.

It was the first time that I had had Deep Fried Turkey but I have to say that my mother and father did a great job. It was definitely the best tasting turkey I had ever had. Crispy skin, juicy white and dark meat, and cooked in only one hour. Now, I am not saying that everyone should go out and buy a turkey fryer but if you think you can handle using one without burning down your house you may want to give it a try next year.

For us, Thanksgiving will be encapsulating two weekends. Tomorrow, my wife and I will be going to Uncle Michael and Auntie Kate's to celebrate with their family. This was a little unplanned but my sister-in-law was very kind to move the celebration to this weekend so that we could attend. Why? Not because my parents were having Thanksgiving last weekend but because people were sick and my wife and I will not be around people who are actively sick in a closed environment. So, again we affected by having a child with a disease that leaves him without an immune system. Regardless, we are extremely happy that we have been able to attend both celebrations and Parker has been able to spend time with his grandparents at home while we do so.

Home Life
Now, I had mentioned that I have spent quite abit of time in my office working leaving most of the morning to my wife so that she can watch Parker and still make sure the house is extremely clean. That said, I do spend the rest of my time with Parker watching him grow and develop.

I have to say that in the two weeks that we have been home I have seen big changes in my son. I had mentioned earlier that we do spend most of our time with Parker upstairs. Parker has a couple of rooms where his toys are located in addition to the loft outside these rooms and of course the doors to our bedroom are also usually left open. So, Parker normally runs around from room to room finding toys that are just small enough to fit into mommy and daddy's VCR. Now, I know like most people we don't really use a VCR any more but that last thing I want is to go and use it that one time and find out that I cannot fit a tape in it because he shoved a toy car, a DVD case and one of Mr. Potatohead's ears in it. And yes, we have learned that saying no really has no effect. Well, I would not say it has not effect. It does give us time to run over to him as he sits there on his knees in front of the VCR smiling at us as he puts the toy in the slot.

Soccer. Yes, after spending seven months in Italy the only "real" sport that my son has become accustomed to playing is soccer. The upstairs is large enough to play monkey in the middle with Parker as my wife and I kick the miniature soccer ball to each other. Okay, we are not that mean. We pass it to Parker so he can kick it to. I would say he kicks it 30% of the time, picks it up and whips it with two hands 60% of the time and then for the remaining 10% he runs up to it, steps on the ball and falls flat on his backside. Oh well, Parker does not care. Actually he usually sits there for a second and then picks up the ball and throws it at one of us. I guess that means he throws the ball 70% of the time, doesn't it?

His blocks. In Italy he loved his blocks. By the time he left he was building some nice towers out of them. Those were the days. What does Parker do now? He goes over to his large plastic wagon full of blocks, crouches over them, and then first with his left hand he grabs a block and flings it behind him, then the right hand, and back to the left hand again. He were amused the first time we saw him do this but then when we saw him sitting on a large pile of his books flipping through the pages of most likely the only book that he had not done the same thing to as his blocks we realised it was time to nip this habit in the butt. My son has a disease that I would not wish upon anyone but that does not mean he gets to be a brat. The next time I saw him throwing his blocks I walked him around the room and made him pick up each and every block. Now, although we still catch him doing his with his blocks once in a while, he now is in charge of going around the room and picking up every block he through and putting them back into the wagon.

Things with wheels. You know, Parker was not that interested in his toy cars and trucks in Italy. That said, since coming home his favourite toys have wheels on them. He loves his dump truck that he pushes around on the hardwood downstairs. He fills it up with everything he possible can. He loves racing his cars down the ramp of his Disney Cars toy. And recently, he started pulling his wagon of blocks out of his room and out to the loft so he can test for the acceleration of gravity by tossing the blocks one by one down the stairs. Well, he did it only once, and only one block. Of course, it does not stop him from bringing his wagon of blocks out to the loft whenever he can.

Peg Perego
Now, I have always said that my wife and I love Parker's stroller from Peg Perego. That said, it took quite a beating in Italy and as a result it had to go for repairs during the month of July while in Italy. Peg Perego is from Italy so with the stroller still under warranty we had no problem getting fixed except the person I spoke with did not speak English.

Unfortunately, when we were leaving for the airport in Milan, the same problem that we had repaired in Italy reoccur ed. So, our wonderful stroller was causing us major problems. So, when we returned to Canada my wife called the Canadian office for Peg Perego located in Pickering and explained the importance of Parker's stroller to us. Without it, hospital visits are impossible since Parker will not wear a mask.

The woman at Peg Perego was absolutely amazing. She had someone pick up the stroller from our home so that she could look at it. It was decided that the best solution would be to replace the stroller instead of trying to fix it again since it still remained under warranty. So, now, Parker sports a a cool new funky green Peg Perego Uno stroller. He loves it.

Parker and Jett
Just over a week ago, Uncle Michael and Auntie Kate came over with their son Jett. He is much younger than Parker but definitely old enough that the two cold interact with each other. I have to say that Parker and his cousin had the greatest time together. Now, I cannot speak for either of them although I don't think they have the words to complain but they looked like best buddies.

Yes, they did touch but Parker's friend made sure to stay squeaky clean during his visit which made it very easy for us to ensure that Parker would be safe.

To Be Home**

2007-09-30T08:44:00.000-04:00

This seems to be one of those articles that I have so much that I want to say, but as I sit here at my desk I find it quite difficult to put everything into words. That said, I will begin by saying that it is so wonderful to finally be back in Canada with all of our family and friends. To make it easier on everyone I shall package my different ramblings under subheadings as I have regularly done in the past. Let me begin.

Our Trip Home
Similar to our arrival to Italy, we travelled with Air Canada and Luftansa. Air Canada had arranged all of the travel arrangements for us and as always made our life much easier while changing flights in Franfurt and when we arrived in Toronto. An Airport contains quite a few people and with that there is the increased risk of Parker coming in contact with someone who could possible cause him to obtain an infection. So, having an Air Canada representative escort us through the airport in such a way that we spent very little time in a line put us at ease.

The actual flight with Air Canada was excellent. We flew on a Boeing 777 so it was a newer aircraft with some very nice amenities. Parker had his own personal television that he could watch in addition to the one in front me and the one in front of my wife. An eight hour flight is a long time for a 20 month old and I have to say that he was quite good during the flight. For the first few hours he sat nicely in his car seat between my wife and I. However, after being confined for three hours Parker began to become restless and wanted to walk around the aircraft. Of course, this was a little difficult and all we did let him do was walk in front of our seats. There was a little bit of room for him since we sat in bulkhead but again Parker soon got bored and a little bit angry since we would not let him tear the duty free magazine apart. Overall, I have to say that I was pleased with Parker's behaviour while on the flight. Everyone did everything they could to keep Parker along with my wife and I as comfortable as possible. The flight attendants were very aware of our situation and extremely accomodating to our needs.

The Reception
When we finally arrived in Toronto we were met by family and friends who were so happy to see us and Parker after going over six months without us. Parker, for the first time saw all of his cousins in one place. Mind you he was behind his shield while at the airport so it was much easier for us to make sure that he did not touch one of his cousins or vice versa.

We were also met by the Toronto Star who has followed our story from the very beginning. They have always been very good to us and have made it much easier for Parker's disease and gene therapy to become more widely known and understood by their readers. For those of you who had a chance to read the full article in the paper on Friday or the condensed version in the Metro I am sure you would agree that they did a wonderful job. As always, a big thank you to the Toronto Star.

From the airport, we, along with all of Parker's aunts, uncles, cousins and grandparents went back to Parker's Nonna's for a little reception. Now, this is something we have not been accustomed to doing the past 20 months but we have become very educated on how to be around people and still keep Parker infection free.

With everyone healthy, we allowed Parker to run around my parents house even though all of his cousins were there. Parker is used to not having other children come close enough to him so it was good to see him take a step back if anyone got to close.

For the most part, Parker kept to himself and played nicely with the magazines. The little monkey has become quite the organizer so he enjoys taking all the magazine out and putting them back when they go in a somewhat neat stack. It was definitely nice being able to spend time with everyone. Tonight, we will go with Parker to my parents for Sunday dinner. Unfortunately, Parker's cousin William has a runny nose so his family have been nice enough to stay home this afternoon so that we may attend.

Parker's House
Parker had become accustomed to living in a relatively small apartment in Milan with only a few hallways that he could actually run down to get some exercise. It is hard to describe the smile on Parker's face when he saw all the space he had when he got into his home. He ran from one room to the next, then he would return to the previous rooms to make sure that they were still there and he was not mistaken. Then, when he went upstairs and saw all of his toys his smile grew even larger.

In the couple of days that we have been home we have learned a couple of things. First, the main floor is not Parker proofed. We have a few glass tables on the main floor, in addition to the wine rack and a bar cart with lots of glass at the perfect level for Parker. So, for now we find ourselves chasing Parker around the main floor letting him know what he can and cannot touch. That said, most of his toys and his play room are located on the top floor that is much more condusive to a 20 month old. Parker also enjoys running around on the hardwood floors downstairs and has wiped out a couple of times already so it is very important that he has good grips on his socks. Children's Place sell great socks that grip the floors quite nicely.

When we were away we had a gate put up so that Parker cannot run or fall down the stairs. What we had not thought of is the way a child of Parker's age is supposed to go up and down stairs. When we left for Italy, Parker was only crawling and used that method of transportation to go up the stairs. The way down was much easier for him, daddy carried him. Now, that we are home and Parker walks we had to come up with a better way. While in Italy, we always held his hand as he walked up and down the stairs since thyey were not very steep. Some steps outside he was able to do without any help from us at all. So, when my mother started teaching him how to go down the stairs by himself by crawling backwards I was a little surprised.

After getting down on his knees in the backwards position, he then propells himself down the stairs on his stomach using his feet, knees and hands to keep him from gettig there faster then me. I have to admit that the little monkey figured it out very quickly. After only one day, Parker had mastered going down the stairs.

Parker's first sleep in his old crip went very well. Yes, he did wake up after an hour crying uncontrollably but after 30 minutes and some music we got him back to bed where he stayed for another 11 hours. As for his first nap, I quickly learned that his crip was too close to the wall. Parker had pulled down every wooden letter that he could reach off that wall behind his crib.

A Visit To Nonni's
My Nonna had always made sure to call us in Italy everyday so when she phoned me yesterday morning asking if we could bring Parker over to visit her we did not hesitate. Parker had a wonderful time running aruond his Nonni's backyard. It was the first time we had let him run on grass and the first time we let him touch a flower. The little monkey absolutely loved the experience. Afterwards, we took Parker inside so that he could play in her living room.

Now, my Nonna's home is also not Parker proofed but she had no problem letting him pick up wheatever he wanted. For the most part Parker played with the coasters. Stacking them and then unstaking them. He is quite the little organiser.

A Trip to the Zoo
My parents have season passes to the Toronto Metropolitan Zoo and had asked us if they could take Parker to see the dinasaur exhibit that is currently on display there. We figured that the three of them would enjoy the experience and with very few people at the zoo when it first opens in the morning it should be quite safe for him. Although we were not with them it was obvious from the pictures that Parker really enjoyed himself.

**Images soon

Looking Forward to Home

2007-09-25T09:11:00.000-04:00

I do apologise, as I normally do when I do not write an article in a long time. We have run out of Internet time so we have to purchase a card for every 30 minutes of Internet we use now. So, we try not to use up the card too quickly. In addition, I have tried to use as much of my free time to review for my exam that I have to write a couple weeks from returning to Canada. That said, I am writing now and we do have some good news.

I had mentioned that there was a good possibility that we would be returning home with Parker very soon. I am happy to say that we have gotten confirmation from Parker's team of doctors in Italy that we may return to Canada. Thus, in the next several days we will once again get to sleep in our own bed and Parker in his own room.

My wife mentioned last night at dinner that we have spent a lot of time in our battle against Parker's immunodeficiency. Now, that we are going home I can say that the first half of the battle is complete.

Parker still remains immunodeficient. Actually, he is much more immunodeficient leaving Italy than he was coming. Without giving away too much information about the team's work I will give you a couple of numbers to ponder. Eight months ago Parker had about 2500 neutrophils per unit of blood and the results of some tests in the months prior to then Parker had over 3000. Since completing the gene therapy and after giving his bone marrow some time to recuperate from chemotherapy Parker's most recent blood results have his neutrophils just beginning to reach 2000. And even still, there will definitely be some fluctuations in these level over the next several weeks.

If you have been reading the blog for a while now you may remember how well Parker responded to PEG-ADA (the injections of ADA he received twice a week to give him the enzyme he was unable to produce himself). The greatest number of lymphocytes that I have recored for Parker are 2600 cells/unit of blood. Now, this is a relatively high number of cells for a child on PEG-ADA but as I had mentioned Parker did respond well on enzyme replacement therapy. Now, before I mention the number of lymphocytes that Parker has three months post gene-therapy I have to mention a couple things about PEG-ADA.

First, PEG-ADA is not a long term solution. Although Parker had normal levels of lymphocytes (low but relatively still normal) while on PEG-ADA the effectiveness of the drug after only a few years of being on it decreases significantly. It decreases enough after three years that Parker would have very little few lymphocytes left by the time he was to enter kindergarten.

Secondly, Parker would have to have the twice weekly injection of PEG-ADA for the rest of his life. With each injection costing $2500US it becomes very expensive and there is no guarentee that the government would pay for the drug indefinitely.

It was for those reasons we chose to take part in the gene therapy trial rather than having Parker stay on enzyme replacement therapy for his lifetime.

As I was saying, Parker had quite a few lymphocytes while on PEG-ADA (2600 in August 2006). Shortly, when we leave Italy, Parker's lymphocyte level will be somewhere in the range of 100 to 200 cells/unit. Yes, this is significantly less that what he had on PEG-ADA but we knew right from the start that it would take quite a bit of time for Parker's lymphocyte level to increase after gene therapy. They may never reach the level they were while Parker was on PEG-ADA but at least a portion of his cells produce ADA by themselves. For that reason these modified cells will be able to rid Parker's body of the metabolites that cause serious damage to his organs in addition to putting his immune system into a state where it is unable to fight infection.

We are still unsure how well the therapy will work for Parker since there was some difficulty with the therapy over the past months. Remember, there was a time that we thought we were going to have to repeat the therapy because it did not work. Now, only a couple of months later we are happy to know that although Parker may not be their most successful patient to date the therapy does seem to be working.

What do these numbers mean for us and Parker? We must continue to keep him protected so that he does not catch a serious infection. My wife will remain at home for at least another year before returning to work and we both will do everything possible to keep ourselves from bringing anything that can harm him inside the walls of our home.

We are extremely excited about returning home to see our family and friends. There are so many people that we want to thank and I know that I am going to miss a bunch of people but I want to try anyways.

Thank you to Nonna and Nonno. You have always been there for me when I have really needed you. I was so happy when you told me you were coming to Italy. The month you spent here with us was definitely the best month I have ever spent with the two of you in my life. Parker had such a wonderful time with you when you were here and I know he will be so excited to see you when he comes home.

Thank you Nana and Gaga. The two and a half months that you were here meant the world to us. The hours that you spent with Parker while he was in isolation were invaluable. Parker loved it and it gave Tracy and I some well needed rest. We also want to thank you for everything you have done while you have been in Canada and we have been in Italy. I know that our home will be in pristine condition when we see it very shortly. A special thank you to Roy for his daily trips to the house. Parker is just itching to get up on your shoulders.

Thank you Auntie Natalie. We really appreciate that you came to visit us in Italy. You came during a very difficult time for us but you always made sure to be positive. You are a great friend not only to my wife but also to me. We look forward to spending time with you and Uncle David when we return.

Thank you to my Nonna (Parker's Nonni). You called us almost every single day since we arrived in Italy. You have not only been a great grandmother to me but also to Parker. We promise to bring Parker to your home regularly so he can see his Nonni. We will never worry about the cleanliness of your home since next to ours there isn't a home that is cleaner. You better stretch your legs so that you can chase Parker every where.

Thank you to Parker's God Parents. Your thoughts and prayers have always given us and Parker strength. You have done so much to let other people know about Parker and we are extremely appreciative of that. We look forward to having the two of you over when we return so that Parker can see how lucky he is to have the two of you as God Parents.

Thank you to Uncle Michael, Auntie Kate, Auntie Christine, Uncle Mikey, Auntie Frannie and Uncle Pete. You have been wonderful aunts and uncles to Parker. Although it has been and will be difficult at times for our children to play together you have always been understanding of why. I look forward to the days that Parker will be able to play with his cousins without having to watch him under a microscope. Thank you for your emails and phone calls here in Italy. It has definitely made our time easier knowing who we have waiting for us at home.

I want to thank Dr. Aiuti and his team of doctors here at the San Raffaelle. His dedication to finding a cure for ADA deficient SCID is incredible. Although our battle with Parker's disease is not yet over we are very thankful to know that there are doctors like you who are willing to fight there hardest when the battle seems to be at its darkest moment. We will be forever grateful to you.

Thank you to our team at Sick Kids in Toronto. You diagnosed Parker early enough that he did not have any side-effects due to the build up of metabolites in his system. You helped us protect him and gave us guidance when needed. We look forward to seeing you when we return to Canada. You will not believe how much Parker has grown in the past six and a half months.

Thank you to Air Canada and Luftansa for getting us to Italy and back to Canada problem free. Air Canada is definitely a world class airline.

Thank you to everyone who has said a prayer on Parker or our behalf. You have given us strength during times that it could have been easier to have just given up. I believe that science can only do so much and you need faith to do what science cannot.

Friends

2007-09-16T09:07:00.000-04:00

I have to say that the last week has been so much easier for my wife and I. Why? Because life sort of seems a little bit more normal with Parker having two friends that he spends most of his day with.

Parker has loads of fun when he is with his friends. I have never seen him laugh and run so much in my life. When he comes in after playing his hair is actually sweaty in parts. Yesterday, we decided to take a trip around Milano 2 with Parker, the two girls and their mother. The main attraction was to feed the turtles and the big fish that Nonna and Nonno had introduced to Parker just over a month ago but everyone enjoyed themselves the whole time.

Yes, we did make it to the pond where the children got to throw a day-old baguette to the animals swimming around. It was definitely a little bit different then we were used to though. The fountain was on so so the turtles who normally frequent the pond hid themselves from the falling water. Then, a small dog that looked a lot like the dog from the television show “Fraser” came out of no where and jumped into the pond. He swam around causing the water to become foggy.

Eventually, through the sand and water we saw a turtle trying to eat some of the bread that Juliette had actually thrown into the water instead of eaten. But it was for only a quick moment because the little dog came right up behind the turtle and nipped at his back-side. The turtle then went head over tail in the water as the dog turned sharply causing a wave that the little turtle could not overcome.

I had promised everyone blueberry pancakes for breakfast this morning. So, Parker had a great surprise when the little girls came over at 9am to enjoy a breakfast that did not consist of the same porridge Parker has become accustomed to over the past year. I had picked up some Canadian Maple Syrup from Unes yesterday so that our friends could give it a try. Although they did enjoy it I have to say that it was definitely not the Maple Syrup you would get back home.

Now, I must admit that I am pretty much content with being in Italy and I do my best not to let things bother me, but my wife has definitely found it difficult. So, now that she has someone that she can spend time with (other than her loving husband) she is much happier. The mother of the two girls that Parker regularly plays with is a wonderful lady and Tracy really enjoys spending time with her. The last two evenings Tracy has gone over to spend several hours with her to share conversation and wine while the children slept. I am extremely pleased that she has this, I only wish she had this right from the beginning. That said, we did have our families and Natalie here for more than half of our time in Italy and that made life easier for everyone.

Well, I better publish this article so I can finish my studying before Parker wakes and wants to go visit his friends for the afternoon.

Meltdown

2007-09-14T11:15:00.001-04:00

I must say that this portion of my studying allows me to write articles more frequently. For those of you who care, my studying is going well and I should be able to write my exam within a couple of weeks of going home.

I have titled today's article “Meltdown” because that is exactly what we witnessed happen yesterday evening. After a wonderful day, we realised that our little boy is only normal and there are going to be times when being isolated for so long from other little people is eventually going to have its effects on Parker.

Last night, just prior to going to bed, Parker had a visit from his little Irish friends. It is normal for either they to come knocking on our door or Parker on theirs before bedtime, so that the saying of good night may be exchanged.

Parker had a blast when the girls came to visit him just after seven last evening and was more than happy to show them his Pinocchio so that daddy could explain to them that he too had one just like his when he was Parker's age. He even tried to give his girl friend the necklace that he and his Nonna had made together when she was there last month.

Then, it was decided that Parker along with mommy and daddy would walk the girls and their mother home. We arrived at their door only a few moments after leaving ours and Parker began to wave bye bye to them from their doorway. Kisses were blown in both directions and then Parker proceeded to run down the hallway as he regularly enjoys doing. Only this time, the two little girls came out running after him.

Parker stopped about 30 feet from their door then turned around to see the girls running right toward him yelling, “Parker, Parker!” He did not respond. Then as quickly as they ran up to him they ran by him and proceeded to turn the corner on their way to the elevators. Parker timidly followed them, making sure to keep his distance and remain only an arm length from his mommy.

Then, when Parker reached the adjacent hallway, he was once again greeted by the two girls who continued to yell his name, as they invited him to play in their little game. Again, the girls turned around and continued to run down the hallway towards the elevators. By now, Parker was standing beside his mommy, grasping her leg tightly with his left arm with his head pressed against her knee. “Go see your friends”, she said. Parker did not budge.

Mommy then picked up Parker and walked with him down to where the elevators were. By now, the little girls were running down the next hallway, still yelling his name. Mommy put Parker down on the floor thinking that he would run after the little girls who were still calling him.

But her did not. Instead my son broke down into tears as he turned to his mommy and grasped both of her legs tightly with his arms.

Now, please remember we do not normally hear Parker cry. Well mannered and very brave is how I would describe him. To be honest, I never have heard him really cry before. Yes, when he gets a battery of needles he fights and yells but nothing like we heard last night.

When mommy picked Parker up he continued to cry for a while until he realised his request had been granted and was in the safety of his mother's arms. Was he afraid of the little girls who were running around him and yelling his name? Was it that he was tired? Was it that he was not used to interacting with children his own age, or was it a combination of the three? Regardless, mommy made his tears go away..

Today was better. Parker went over to his friends' house first thing this morning to say hello and blow them kisses. A few hours later, we all watched “The Backyardigans” together. Parker laughed and danced with his friends during the many songs that play through each episode. Yes, Parker was a little timid during the dancing as he made sure to only dance while sitting on my lap or standing in front of me while holding my leg. However, everyone once again seemed happy.

I Came all the Way to Italy to Meet my Irish Wife

2007-09-13T10:00:00.000-04:00

My wife has gone with her friend from Ireland for the afternoon. Parker has gone down for his nap and I am taking a break from studying for my SCBCD exam.

I have to say that the past 24 hours have given me more excitement than I could possible handle for one day. Although, most of the excitement would be considered unwanted excitement there were also some good that happened as well.

Let me begin with Parker's blood results from yesterday. I had mentioned previously that Parker's neutrophils had dropped last week to once again put him under 1500 neutrophils per unit of blood, that being the threshold for neutropenia. Yesterday, we had hoped for an increase in his cells but we were devastated to hear that they had dropped another 200 to put him below 1000 neutrophils, a total decrease of 700 cells in just two weeks. With Parker having some major tests being performed next week to confirm that the gene therapy is working and so that we can leave for Canada at the end of the month you can image how stressed we were when we found out about Parker's results yesterday.

We spent most of the day waiting for Parker's doctor to call us to see if he was worried or not. It was just after half past seven in the evening our time when he called to let us know that he was not worried and that he expects Parker's neutrophils to increase next week. The major problem about doing so much research on your son's disease and being so involved when it comes to knowing and understanding the results is that a lot of stress comes with it. That said, we remain content knowing that we may still be coming home soon and that our son is clinically and developmentally doing very well.

Now, on to our next bit of negative excitement. For reasons you will learn shortly, Parker was put down for his afternoon nap at four in the afternoon yesterday. We figured that he would fall asleep almost instantaneously and were very surprised to witness all of the energy that he had stored away. So, with my wife and I mentally tired from recently learning Parker's blood results we decided to lie in the bed near Parker's playpen in hopes that that would help him fall asleep.

Instead, he did everything he could to get our attention. First, it way throwing his monkey at us. Then, his blanket on the floor. Then, he shouted at us. “Dada! Dada! Up, up, up!”, he would yell. Then, he did it. The same thing he did every other time he was in his play pen. He tried to climb up the side of his playpen. Normally, his feeble attempt included a couple of steps of the mesh but then he would lose his gripping and slide back down. This time was different. After his second step, he flexed the muscles in his triceps and then straightened his arms so that his elbows locked.

He had done it. The top horizontal bar of his playpen was now situated at his belly button. What a feat. And then it happened, in a fraction of a second he rested his hips on the bar and over he went. It was if I had saw the whole things in slow motion.

First, his face hit the ground, then the rotational motion kicked in from his push off the bar and the top of his head was suddenly the only thing now making contact with the ground Finally, he came to rest lying on his back facing the ceiling.

Can you image the stress we were feeling. I quickly got up from the edge of the bed and picked up my son who lay there on the floor in front of me. “Tickle, tickle, tickle”, he said. Of course, Parker didn't care. Why would he. The little guy had just figured out how to escape from his playpen during nap time.

Of course, I immediately went downstairs to reception to ask for a new crib for Parker. One that was high enough that he could not climb out of. After about an hour they brought us in a brand new crib where Parker to sleep. Surely, the little guy would not be able to climb out of this crib.

I have to say that he slept well in his new bed last night. This afternoon before nap, my wife put him in his crib while she took out the garbage. Me, I was working on tonight's dinner. Meatball and Italian sausage sandwiches. Can you imagine my eyes when I peeked around the corner into the bedroom to see Parker standing there in his crib with the side of the crib down. I ran there as fast as I could to lift the side back to its normal position. Why climb out of the crib when you are smart enough to just lower the side down. That said, Parker is now asleep in his crib that we have positioned and modified in such a way that he is unable to get out. For now.

Okay, I had said that I would explain why Parker was late for his nap yesterday. See, Parker had a date. We, along with our friends from Ireland thought it would be a great idea to set up a portion of the hallway as a movie theater for Parker and the girls to watch a movie together. So, after bringing out some chairs, a table and the laptop we were all ready to watch “Over the Hedge”. The youngest of the two girls had fallen asleep prior to the start of the movie, but Parker and his girlfriend watched the movie from beginning to end. Of course, Parker may not have looked the coolest drinking his bottle of milk in his mommy's lap an forty-five minutes into the movie but he made up for it when he had daddy bring the two of them their own bag of crackers to eat during the movie.

Now, I have to say that it does get better than this. Apparently, after speaking with my wife, I was informed of a conversation between Parker's girlfriend and her mother. Now, I do apologise if I get it wrong but I believe it went something like the following.

“Mommy, I think I am going to marry Parker”, the little girl said to her mother.

“Oh really”, she replied, “and what are you going to where to your wedding?”

Well, the little girl then began to explain to her mother how the dress that she would wear on her special day was going to be very long and pretty.

The mother then asked her, “Well, what shall Parker wear?”

“You know, a pair of trousers and a shirt.”, she replied.

Well, I have to say it is nice that Parker has friends his own age to interact with (in a very controlled environment). How, was today? Well, movie time was a little earlier. Parker found his way to the same place they had met yesterday without a problem. How hard could it have been when all he can hear from down the hall are two little voices saying, “Parker! Parker!”

I Promised Pictures

2007-09-11T07:38:00.001-04:00

Bath time with the duckies.

Parker not using the tunnel to get into the tee-pee correctly.

Parker posing for the camera before realizing he is stuck.

Parker realising he is stuck.

Parker posing for the camera during naptime.

Parker figuring out how daddy parker-proofs the cabinets incorrectly.

Parker during nap time when Daddy is in charge. Listen Parker, Daddy is the boss of you. Regardless, he threw his mattress out of the bed and then his monkey too. So, who do you think is the boss here?

Parker watching his Brainy Baby video after finishing his cereal.

Get out of my way mom. I smeared my dinner all over my face. Isn't that sort of like eating it? Now, let me watch my video!

Parker trying to put his new Geox on.

Parker watching his video after having his bath and dinner.

Parker's Girlfriend

2007-09-10T06:18:00.000-04:00

It has been a while since the last time I wrote an article and again I do apologise. To be honest, not too much has occurred in the past week. Parker did give quite a bit of blood last Wednesday, and his neutrophils did decrease making him once again neutropenic. Well, neutropenic in the sense that the particular vile of blood they tested showed that he had less than 1500 neutrophils per unit of blood. That said, no one seemed that too concerned about it. Parker will give blood in a couple of days to see what his white blood count is at that time.

Since things here in Italy have seemed to turn around for us in the past month and a bit, it does look like we should be able to return home to Canada near the end of this month. We are definitely looking forward to seeing our family and friends again. It will still be a long time before Parker can live a normal life but at least it should be closer to normal by being at home. I know that Parker can't wait to see his Nana and Gaga, and Nonna and Nonno again.

Parker really has not seen Francesco in the past while, but the same can not be said about his two little friends from Ireland. In the past week, his two little friends have started to pay more attention to our little guy. Parker loves it when he sees them in the hallways and always makes sure to dance for them and blow them kisses. It was a couple of days ago that the older of the two turned to her mommy and said, “I think Parker is in love with me”. She then turned back to Parker and started blowing kisses back at him. So as it now stands, it seems as if Parker has his first girlfriend.

We have recently started Parker-proofing the drawers in our apartment. Unfortunately, there are too many drawers for us to keep Parker out of, so we still find ourselves chasing Parker around to make sure that he is not pulling everything out of all the drawers.

I hope to write another article in the next day or so so that I do not keep everyone waiting to find out what has been happening over here in Italy with Parker, my wife and I. I am going to post another separate article with only images so those of you who are interested in seeing the little guy can do just that.

Ramblings about Nothing

2007-09-04T09:25:00.001-04:00

I am quite bored of learning about transaction contexts in EJB so I have decided to take a break and write an article. I always find that I write more articles when I am studying since I use the time as a distraction. My wife has again gone downstairs to use the computer in the lobby so it is actually the perfect time to update the web site.

We found a store around the corner from our residence that is very similar to a Bargain Harolds or BiWay so we decided to take a look through it earlier this week. To be honest, we originally went in hoping to find something that could help us keep Parker in his stroller during our walks outside but we ended coming out with something completely different.

If you look back to the images from a couple of articles ago you will see a tee pee, and tent attached with a tunnel. When we say it we figured it would be great for the little guy to explore and play in. Parker really enjoys playing with his blocks inside the tent and tee pee, and regularly moves them from one area to the other. Parker does not frequent the tunnel to often as he is smart enough to realise that it is not the fastest way between the two spaces.

As I had just mentioned, Parker is not nearly as keen on staying strapped into his stroller as he used to be. It pretty much started when we decided to let him walk around outside by himself. Since then, he tries desperately to slide his arms under the straps so that he can stand up and get out of the stroller. Recently, I modified the straps on his stroller so that they fit his body better and made it more difficult to “Houdini” himself out. It still takes some work on our part to keep him in the stroller but with the modifications we do have more time to pull his arm back under the strap.

Another little difficulty that we have run into lately is that Parker's nap schedule has changed. Why? Because Parker said so. We still put Parker into his crib around one in the afternoon but now he plays in his crib until three before only sleeping for just over an hour. We don't really know what to do about it since communicating with Parker logically is a little difficult at the moment. So, we just let him goof around in his bed until he decided to go to sleep. The only good thing about it is that it gives us more time in the afternoon to relax.

This morning we also decided to take a walk to the Geox Outlet near us. For those of you who are unaware of Geox they are an Italian made shoe and Parker currently has a pair that we purchased in Canada before leaving for Italy. We originally set out to get Parker's foot measured to see what size shoe he should be wearing since when we purchased shoes for him in Canada he did not accompany us to the mall. When we got to the outlet it was quite empty and it allowed us to not have to look over our shoulders every second to make sure there was not someone about to cough or sneeze on Parker.

After having Parker's foot measured we found out that Parker has increased his shoes size by 2 since arriving here in Italy. Parker is now a size 23 using European sizes. With this new information we decided to have Parker try on a new pair of Geox shoes. These were a little bit different then the ones he currently has. For one, they are Velcro, and secondly the words GEOX light up on the side of the shoe whenever he takes a step.

Well, Parker loved them.. As soon as we put them on his feet he wanted to get out of his stroller and run around the store. So, that is what we did. Proud as a peacock, Parker run up and down the aisles of the shoe shore. We were worried that he was going to walk to play with the velcro, or the lights on the side of his shoe, but he did not. He just smiled, and walked around.

Tomorrow, Parker gets his monthly IgG infusion and my wife and I both give blood to cross reference a test they did on Parker a few weeks ago to obtain the particular mutation he has in the gene responsible for producing adenosine deaminase (ADA). We need the results of the test so that we can make sure that our next child does not have the same disease as Parker since there is a 25% chance that each child we have will be an ADA deficient SCID.

Also, Parker wanted me to wish his cousin Patrick a great first day of school. Parker knows that you are going to be the smartest person in your kindergarten class. Remember to have fun, Patrick!

Boys will be Boys

2007-09-02T08:45:00.001-04:00

I am not sure the last time I wrote but I know it has not been in at least a couple of days. Parker just went down for his nap and my wife is taking a trip downstairs to use the computer on the main floor. Nothing major has occurred in the past couple of days but I thought I would at least update everyone on Parker's latest escapade.

Parker has not seen his friend since the last time that I wrote. I think the mother is feeling a little under the weather and for that reason they have not been out in the halls nearly as much as they normally would. To be honest, we would not let Parker play with his little buddy even if he were available for play since the last thing we need is Parker catching whatever the mother had through his friend.

We did meet another family a couple of days ago. They are from Ireland and have two little girls that are both older than Parker. One is two and the other four. It is very funny watching Parker interact with them as they are much more mature and proper than his other friend. Let me see if I can best explain their most interesting encounter together.

It was by the elevators where Parker normally meets up with his friend Francesco. The two girls in their pastel coloured dresses both hold their mother's hands as they watch Parker parade in front of them. The youngest eats a peach while staring at my son doing his best to be the centre of attraction. You know how little boys are when they want a girl to notice them. First, he spins in a circle, then when that does not work he shakes his head and bounces up and down as he would if he were dancing to his favourite song. Still nothing. Not even a hello. Then he laughs, and looks at me to pick him up and hang him inverted from his feet so they can see how much fun he is. Foolish energy, I call it, and it gets him only a confused look from the younger of the two. Then, he starts to run in a circle, first a small one, followed by a larger one, each one getting larger than the one previous, and then finally a circle big enough that the little girl is now in his path. Then, when he decided that no one else sees it, Parker's hands go up in front of him. As he approaches her from behind he sees his opportunity, and with all of his might he extends his arms out in front of him. But then he realises it. His attempt to get the little girl to notice him has been foiled as he looks down at his hands to see that daddy was now holding them. “Bye, bye”, he says as he waves to her from above as daddy carries him away. Then, the little girl looks up at Parker as she extends her arm out that holds the peach, returning the smile.

Images of Food and Stuff

2007-09-02T08:34:00.001-04:00

Ahhh. The elevators. This is also where Parker hangs out with his friends.

Not exactly Tim Horton's steeped tea. How many times a day do you think I hear from her that the first thing she is going to do is go to Tim Horton's when she gets home.

Parker playing in his tee pee.

Parker playing in the tent we got him. It attaches itself to the tee pee above.

Homemade Fish and Chips. We had to use up the frying oil since we have no where to store it. That means we have grease food for four days.

A calzone with prosciutto coto, mozzarella, tomato sauce, salame picante and zola.

Parker. Just Parker

My dad needed to see the pizza from Chinatown once more time.

Be Nice, Parker!

2007-08-30T07:30:00.000-04:00

I decided to take a break from my studying to write today's article. We just put Parker down for his nap, and my wife decided to take advantage of the fact that it is not raining to go to Unes to grab some milk and diapers, so I finally have some time to relax and update everyone on Parker.

We did go for blood work yesterday. Parker's neutrophils did increase by another 100 yesterday although some of his other numbers fluctuated in the other direction. We have mainly been concerned about Parker's neutrophils because that was our main concern a month a go. We did not get the rest of the results of Parker's bone marrow and peripheral blood yet but I will email our doctor today to see when we are meeting to talk about the rest of the results and what our future plans are with Parker.

We really are getting home sick and are looking forward to returning to our life in Canada. That said, we understand (some better than others) that until we know we are out of the woods and we are looking at smooth sailing, we need to stay here in Italy where the experts are.

Parker did see his friend again yesterday. He lives about one hallway away from us, so we see him and his mother every couple of days while on our way to the elevator. Parker gets so excited when he sees him and to be honest, we love watching the two of them play and interact. Yes, it is work on our part to make sure that Parker does not do anything that could get him sick but we are pretty cautious and extremely observant during there brief and controlled play times.

The two of the congregated at the area near the elevators where there is space to run around and play. Parker is three months older than his friend and definitely bulkier and slightly taller. For the most part the two of them stand beside each other and bang on the glass that separates them from the stairs below. Then Parker will run over to the fire extinguisher to make sure that it is in functioning condition. Then it is back to say hello to his friend who is only a few feet away.

Of course, it wouldn't be Parker if he did not give me a few things to laugh and write about. The first begins with his friend regularly deciding to crawl on the ground only to then stop and lie there before eventually crying. How does Parker respond? By walking over to his friend, crouching down like a catcher, and then yelling “Up!”, while extending his right arm and finger at his friend.

The other was probably a little more violent, although I am sure Parker did not mean anything by them. Who doesn't run behind someone and then with two hands give them a push so that you don't run into them? I am sure that Parker just did not want to embarrass his friend by showing him he was faster than he. A little push did the trick. Of course, we did the proper thing by telling Parker that was not nice and he should not do that. In our heads, we were thinking, way to go tough guy.

As soon as I get some more information about Parker I will be sure to update everyone. Have a great day!

Very Good News

2007-08-28T07:09:00.000-04:00

Some more good news came yesterday when we got the preliminary results of Parker's three month bone marrow aspiration. Yesterday morning we decided to take a trip to the hospital so they could take a look at a rash on Parker stomach and chest. To be honest, the rash was not something we were worried about and by the time we got to the hospital it had already dissipated. Our main intention was to try and obtain some results of the aspiration.

When one of the doctors had finished looking at Parker we asked if there were any results to the bone marrow aspiration and she responded with yes. That she would let our main doctor give us the “very good speech”. Normally, we have difficulty getting positive information from other doctors so the fact that she had said this made us feel extremely confident about the results.

We arrived at the hospital that afternoon at quarter to four, fifteen minutes early for our meeting. It did not surprise us that it was not until five that the meeting began but to be honest we did not mind so much this time.

Only the first portion of the results were available, those being the ones letting us know the percentage of the different gene corrected cells in both the peripheral blood and the bone marrow. Recall, the last month the peripheral blood showed that there were pretty much no gene corrected cells in the peripheral blood. This month's results were much more positive. Parker is currently no longer the worst patient they have had in the study and is pretty much where they want him to be at this point based on the number of cells that engrafted.

We are still waiting to see if Parker is removing the metabolites on his own. In theory, the results we received yesterday would indicate that he is capable of doing so, but we will know until the test results show this in the next few days.

Tomorrow, Parker will give blood to check his peripheral blood to see if the antibodies that were destroying neutrophils are know under control in addition to the blood tests he normally has performed on his blood. We should also have the rest of the results of the bone marrow aspiration tomorrow.

It is nice to think that we can start to think about coming back to Canada soon. My parents wanted us back for the anniversary in late September and to be honest, I think it is a definite possibility.

Check back in a couple of days to find out how tomorrow went. Also, I know that we are not out of the woods yet but I wanted to thank everyone who has supported us during these times. All of your thoughts and prayers have helped Parker and us tremendously.

A bunch of Images

2007-08-25T07:24:00.001-04:00

I know I put my pants around here somewhere.

Parker finally beginning to use the crayon instead of eating eat. Well, briefly.

Lasagna made in the toaster oven. Hungry?

Sauce for the lasagna. Tomorrow we will have it on pasta.

Parker loves throwing his toys in his playpen. He always tries to climb in afterwards. Probably because he spent so much time in his crib during isolation. Sad.

Parker watching Team Galaxy in Italian. Auntie Kate does the voice of this character in the North American version. At least the theme song is in English and Auntie Kate sings that and Uncle Michael wrote the music for it. After that the Italian version goes down hill.

My version of Insalata Caprese.

Parker looking at his DVDs. Well, actually they are mom's Young and the Restless episodes that Nonno records for her, but as long as he gets to pull them out of the case he doesn't care.

We had this in Bellagio, so I decided to make it when I got home. It is a steak with curry sauce on top of a whole grain polenta. It was so good.

An image of the kitchen and bedroom of our new room at the residence. If you want a better view of the bedroom then check out the newest video called clothes. We left Parker in the bedroom for what we thought was a brief moment while we were in the other room. Watch the video to see what happened.

My wife talking to Nana on the phone.

We decided to go feed the turtles and found out that when they want something from you they are pretty good about getting their picture taken.

Parker staring at me. I haven't got a better caption than that.

Parker running for the camera. Check out the bump on the top-left side of his chest. That is where the central line is located under his skin. They poke a small whole into it each time they want to take blood from him. This is also where they insert the IV into him when he needs an infusion.

Nonna and Nonno taught him to grab the pillows off the bed when they were here. Now, we find ourselves picking the pillows off the floor every hour or so.

Not Neutropenic

2007-08-23T07:22:00.000-04:00

Parker is currently playing by himself in his toy corner as mommy tries to get Parker his lunch ready. As he sits there by himself, he lifts the necklace of differently coloured thimbles over his head and around his neck. However, it only remained there for a brief second as mommy walked into his play area with a piece of cheese in hopes that she could have him eat something while he played. It was a couple of minutes ago that mom gave up on that idea and now the little monkey sits beside me on the floor flipping through a book as I lay here on the bed writing today's article.

A lot has happened in the past couple of days. Parker had more blood taken, along with some bone marrow. But just as exciting, Parker met a new friend here at the residence. Where to begin? How about with his blood results?

Parker's Blood Results
It was a week ago today that we found out that Parker's white blood count had decreased. This was mainly because his neutrophils had decreased to what they were before he was given a mega dose of IgG to dilute the antibodies that were destroying his neutrophils in the peripheral blood. Several of the other numbers did not coincide with the decrease, so we were not really sure if this was just a fluctuation in the recent trend we had seen in the past weeks or if something had happened and Parker's neutrophils were once again being destroyed.

I am happy to report that it was just a fluctuation and for the first time since having his chemotherapy Parker is no longer neutropenic. Once again, Parker finally has 1500 neutrophils per unit of blood. We now hope that the trend continues and when they do another test to see if Parker's blood is still positive for antibodies to neutrophils it comes back negative. If it doesn't, I could see them doing another mega dose of IgG.

Parker's Bone Marrow Aspiration
Yesterday marked the date for Parker for the three month bone marrow aspiration that is done on patients that have taken part in the gene therapy here in Italy. The first bone marrow aspiration indicated that Parker had a very small number of cells in his bone marrow that had a working ADA gene in it. When the second month bone marrow aspiration was done everyone was expecting that Parker had completely lost his engraftment and the gene therapy had failed but the results displayed that Parker had not. His engrafted had increased very slightly and as a result we once again had hope.

Yesterday, one small whole was placed in Parker's hip to remove enough bone marrow to test it for the quantity of the different cells currently present in his marrow. With yesterday's blood results we feel confident that there should be some positive results coming from this test. I am pretty sure that we will not hear any of the results until next week when our doctor returns to the San Raffaelle.

Parker's New Friend
Everyone is pretty aware that Parker has yet to experience what it is like to play with another child. For one, it is kind of difficult here in Italy since we do not know anyone else with a child Parker's age, and secondly, making sure that Parker's environment is germ-free also interferes with Parker being able to be around other children.

That said, a couple of days ago we were walking the desolate hallways here on the top floor of the residence and to our surprise we ran into a woman and her 16 month little boy. To say that Parker was very interested in our discovery would have been an understatement. It is not very often that Parker is walking and he sees someone else like him in a stroller.

Today, we decided that we would let Parker play in the hallway with his new little friend without actually making physical contact. We know that most children are usually not too interested with playing with other children at this age but we were unsure what Parker would be like since he does not normally see or get to play with other toddlers.

Parker had a blast. When he was not trying to talk to his friend he would kick the soccer ball that I had brought out for them to play with. Unfortunately, Parker's friend was not too interested in playing together especially since it meant that they would have to share the ball. With Parker physically stronger than his new friend it was very difficult for him to keep the ball all to himself. So, the result. He began to cry.

Parker stood there looking at his new friend crying at the top of his lungs. The ball lay there between them. You could see the confusing look on Parker's face. What's going on, he probably thought to himself. My wife, crouched beside Parker and me on one knee stood still, waiting to see how Parker would respond. Then it happened. Parker, while staring at his new friend, opened his mouth and let out the biggest yell he could. His friend responded how? By crying louder. Now, even more confused than before, Parker decided to let out an even bigger bellow. Ahhhhhhhhhh! He shouted. Still nothing. By this time, I think the mother had realised that Parker was actually mocking her son. So, in one scoop, she picked him up and put him into his stroller and said that today they will go and they can try again tomorrow. As the elevator door closed behind them you could see that Parker was upset. Not because his playtime was over but that his new friend got to ride in the elevator instead of him.

Staying Positive

2007-08-18T07:41:00.001-04:00

I left the last article mentioning that we were waiting for Parker's numbers. We were hoping that Parker's neutrophils would increase for a third consecutive time after receiving the red blood cell transfusion and high dose of IgG but instead his neutrophils returned to their original level prior to the IgG.

We were quite upset when we got the results and to be honest, we still do not know what to make of them. Dr. Aiuti is currently unavailable and we do not feel comfortable with the answers we get when we ask anyone else but him what is going on with Parker. For that reason, I did not get into it with the doctor that gave us Parker's results. My wife and I do not know what Parker's metabolite level is at the moment or anything else other than what we got from the phone call on Thursday afternoon. For that reason, it is really hard for me to make a prediction of what is going on now.

This coming Wednesday, Parker will give blood in addition to having his three month bone marrow aspiration. All we can hope is that this weeks blood results were just an anomaly and that his bone marrow has improved since its examination last month.

How are we handling all the stress that has been thrown at us you may ask? We just continue to stay positive. Parker is clinically doing very well and we know that when this is all said and done, Parker will live a normal life.

Just Us in our New Place

2007-08-16T08:13:00.000-04:00

It has been a couple days now since my parents left for Ceprano where my mother was born. They decided to spent a couple of days visiting with my mother's family before flying back to Canada today. Since this is the first time she has been in Italy since she moved to Canada when she was six.

It was definitely nice having my parents here in Italy but we all knew that it was going to have to come to an end eventually. The only good thing about them leaving is that it means that we are a month closer to coming home.

We decided to spend the last day going to the Duomo together and then returning back to the residence for pizza. Milano Due is pretty much of a ghost town during the month of August so when we called the pizza place to order our dinner we were not too surprised to find out that they had closed for a couple of weeks for holidays. The only place that has not closed our the two grocery stores and the Chinese restaurant and pizzeria. So, we decided to give the Chinese pizzeria one last chance at making our pizza. Who would have thought that the best pizza my father would try while in Italy would be from a Chinese restaurant. I am not sure if it is because the restaurant was not packed as it normally is but the food we got from there on Tuesday was the best we have had from there yet.

We figured that Parker would be upset when my parents left since they had spent so much time playing together that we decided to move to our new room sooner rather then later. The past few months months we have lived in adjoining rooms since we had three different sets of people visiting us in Italy. Now, that we are on our own for the rest of the time we moved back into a single room.

The new room is much bigger than the last two rooms we had since the larger rooms are now available because it is the slow season in Milano. It is also much further from the elevators so it is quite the hike to the room after we venture outside for our regular walks or trips to the hospital. Parker really enjoys running around the apartment and up and down the hallways. We are glad that he gets to do this because he did not get much exercise before while in isolation as well as being in the small apartment. It also does not help that we do not let him walk around outside since we are worried he will bend down and touch something dirty. Imagine what it would be like for your child to be told that he is not allowed to go and play outside. The only thing going for us is that Parker does not know what it is like to go outside while out of his stroller.

We did make a trip to the hospital today for Parker's blood and weekly examination. We are still waiting on the blood results but Parker did have his weight taken. Parker's weight was recorded at 12.600 kg. I am not sure how accurate it was since the reading was fluctuating quite a bit and the scale was not on the table properly at the start. But, to be honest, I am not really sure how important an accurate reading is at the moment. I mean an accurate reading is better than an inaccurate one but unless there is something else indicating there is a problem a reading that is off by a couple hundred grams is really not going to make much of a difference.

In the next few hours we should here back from the hospital to find out Parker's blood results. Let's hope that they have increased even more and that he is finally above 1500 neutrophils. He was only 100 shy last Thursday.

I also decided to make a change to the order of the videos on the right side bar. The newest videos are at the top and the older videos are at the bottom. Enjoy!

A Break in Como

2007-08-13T06:11:00.001-04:00

It has been some time since I last wrote and even more time since I specified how Parker's cells are reacting to the gene therapy. In addition, there are many other things happening here unrelated to Parker's therapy that I would have normally written about but have not had time. For that reason, I will write another article as I did a few weeks ago where I break the topics into chunks so it is easier to write and to read. Shortly, I will add an article with only images and captions and upload the newest video.

Parker's Treatment
I had mentioned in an earlier article that Parker was given a red blood cell transfusion in response to his rapidly increasing toxins. Parker's toxic metabolites increased more rapidly then any other patient they had seen in the study and for a while the thought that Parker was not going to be able to produce enough ADA by himself to begin decreasing the amount of toxic metabolites in his blood.

Prior to the red blood cell transfusion we did see Parker begin to take control of the metabolites. For three consecutive blood tests we saw the number of metabolites decrease. However, it was decided that with the high level of metabolites in his system it would be a good idea to decrease their number by giving Parker a low infusion of red blood cells. The recent test result displayed a much lower number of metabolites in Parker's peripheral blood. They are still existent but this is what is wanted as it will give the new cells a selective advantage over the old cells in the peripheral blood.

In addition to Parker's unusual number of high metabolites, Parker also had antibodies to neutrophils. The antibodies were present before the gene therapy and may even have been present during the spurt when Parker was neutropenic over a year ago. Regardless, no one knew the antibodies were present and as a result it hindered the progress of the gene therapy. Neutrophils that went out into the peripheral blood after being created in the bone marrow dies rather quickly. This is why Parker's neutrophil level was stuck at just over 1000 neutrophils for quite some time.

The neutrophils are normally the first cell to return to normal level after gene therapy. Since a portion of the neutrophils would have been been gene corrected if they were in the peripheral blood they would have produced ADA and removed the toxic metabolites. However, the antibodies did not allow this and for this reason, I believe that it also lead to Parker's metabolites rising at a quicker rate than any of the other patients.

To combat this problem Parker was given a high dosage of IVIG a few weeks ago. The last two blood tests have shown that Parker's neutrophils have increased on both occasions. This could be because the metabolites have decreased or because the antibodies have been diluted by the IVIG. It will take more tests to find out why and what is going to happen to Parker's immune system.

As for Parker's face? It has gotten much better since stopping the Norvasc. It should be a couple more weeks before it is gone completely.

Nonna and Nonno
It has almost been four weeks since Nonna and Nonno arrived and I cannot believe how quickly the time has passed. I have to say that we are really going to miss them when they leave tomorrow. They have done so much for us in the four weeks that they have been here that we cannot thank them enough.

Parker always sleeps with them at night so that we can sleep in a little bit in the morning. Nonna always takes Parker for a walk when he gets up in the morning so that he can say good morning to the ducks and turtles. Then at night it is the same so that he can say good night ducks, good night turtles.

My mother has taken over half of the cooking duties which to be honest, I was a little hesitant of at the beginning since I love to cook so much. However, it gave me more time to relax and learn from her experiences in the kitchen. We definitely have eaten much better since my mother came to Italy; as has Parker. My mother has made Parker lots of things he never had before and he loved them all. Just the other day Parker had cinnamon toast with his breakfast and he absolutely loved it.

But to be honest, although I will miss my parents a lot when they are gone Parker will definitely miss them the most. Parker loves playing with them. “Nonna”, he says when he wakes up in the morning or he sees her come into the room.

Since they have been here, Parker has learned about stickers, had bubbles blown at him to distract him during his medication, learned how to give a “high five” when asked, pucker his lips when asked for his funny face, what the word Bravo means, how to take off Nonna's earrings, and he rode his first roller coaster to name just a few.

We are really going to miss Nonna and Nonno when they are gone and we look forward to seeing them when we do arrive back to Canada some time in the next months.

Lake Como and Bellagio
With Nonna and Nonno leaving on Tuesday for Ceprano they told us to take a couple of days to relax and recuperate. We decided to take them up on it since we knew the next month was going to be very hard with them gone.

We have heard so much from everyone about Lake Como so we decided to take a travel book on Northern Italy and head up to the Lake. We first took the metro (subway) to the a station that is just below the main train station in Milan. We purchased two tickets for the town of Como, which resides at the base of Lake Como and figured by the time we got off the train we should be able to figure where we would stay.

Although Como looked nice and was very similar but larger to the little town we went with Parker and my parents in Cernusco we decided to choose one of the cities where Lake Como intersects with itself. Think of Lake Como as an upside down Y with the town of Como at the inverted base. Where the three portions of the lake connect are three beautiful small towns on each side of the lake. Since the mountains surround Lake Como there are numerous steps through each town and up the mountain where the hotels, stores and restaurants reside.

We took a bus through the mountains to the beautiful town of Bellagio. From there we could take a ferry to one of the other two towns but after first glance of what Bellagio had to offer we decided to stay put and see if we could find some where to stay.

Remember that most places in Italy shut down in the month of August and everyone goes up to the mountains for vacation. For that reason, and the fact that Bellagio seemed to have quite a few tourists from Germany, France, Italy, the UK and the United States we found it very difficult to find a place to stay. We would go from one hotel to the next to hear that there were no vacancies. When we finally go the what we thought was the last hotel in Bellagio the were nice enough to mention the Belvedere to the right of them and up 183 steps.

The woman at the desk of the hotel called the Belvedere and with some luck we obtained the last room at what I believe to be the nicest hotel in Bellagio. Our room had a view of the other side of Lake Como compared to the other hotels we had previously looked at on the main strip. We had a beautiful view of the mountains and a little patio where we could have a couple of glasses of wine before going for dinner.

It is really hard to describe Bellagio unless you have been there but I hope that the images I have included in the article help to do it justice. The tourist book we had on Northern Italy described Bellagio as being the most beautiful place in Italy and I can truly say that it is not a far fetched opinion.

There is so much to write about Bellagio and Lake Como and I would love to write about it all but time and space limits me. However, I do feel compelled to mention a very wonderful couple that we met at dinner our second night in Bellagio. They were from New Jersey and they sat at the table behind us at La Punta.

Early on during dinner we began talking and very shortly the topic turned to Parker and why we were here in Italy. We spent most of dinner with our chairs turned so that the conversation the four of us were having took priority over our dinners. We learned that our new friends frequent Bellagio each year and as a result they told asked us to join them at there favourite place to go for wine in the evening. We made our way to BellagioPoint.com, a little pub not too far from the restaurant we had just eaten at. From there we continued the conversation with some great homemade wine and cheese.

My wife and I were very lucky to have met such a wonderful and generous couple in Bellagio and look forward to continuing our friendship when we both return to North America.

The next morning we decided to take the hydrofoil boat to Como instead of the bus since it was definitely quicker and probably easier on the stomach too. When we arrived in Como on Sunday we walked through the town in search of the train station we had arrived at a couple of days earlier. It took some time but we did make our way back to it where we purchased our tickets for Milan. It was quite obvious from there that our vacation in the mountains had ended but we were both very thankful that we had the opportunity to do it. The next time we go we will definitely bring our little guy with us.

Not Much Happening Lately

2007-08-06T09:14:00.000-04:00

I know that I have been neglecting the website when my sister tells me that she is waiting for another article. With that, I have made sure to take some time now to update everyone with what has been going on.

To be honest, not too much has happened in the past couple of weeks. Yes, we did have the high dosage of immunogamma globulins and the red blood cells transfusion to decrease the amount of toxins in his blood stream but it is still too early to see the effects of these therapies. Last Wednesday, Parker did give blood and we did see some positive results with the neutrophils increasing by 200 but this week's blood results should display a much greater increase if the IgG is doing its job of destroying the neutrophil-antibodies.

The increase of 200 was definitely a step in the right direction but half a week and only a single blood test displaying an increase of 200 is not enough to let us know that we are in the clear. Now, if they tell us that Parker's numbers have also increased significantly this week and that his toxins have decreased to a level that they are happy with then I will be much more relaxed.

We have spent the past week doing a lot of walking and traveling around Milano. Today, Nonna and Nonno took a trip to the mall near the Gesate subway stop. We heard about it last night and we thought that letting them check it out first would be a good idea. Although we do take extreme precautions to make sure that Parker can be included in as much site-seeing as possible we decided to give him a rest for one day.

I have decided to upload three new videos of Parker on the right side bar. If you want to see a great video then check out the roller coaster video. We love it.

A Lot Of Images

2007-07-30T12:24:00.001-04:00

Bubble Boy.

One of many images of Nonno where I would have a hard time coming up with a caption. This was on our way to San Ambroggio.

San Ambroggio church. This is one of the first Roman Catholic churches. Previously this religion was practiced in secret.

The Duomo. I can't describe this and to be honest not even images due it justice.

This image is of us after we had ice cream. Anything here giving it away?

Another one of many images my father took of the Duomo.

This was the last image I saw Nonno take before we spent the next half hour looking for him. Would you believe he was hiding in the Duomo?

The Gelateria. Parker absolutely loves all kinds of ice cream. Especially if it is coming from Nonno.

Lunch at a pizzeria in the Duomo. My wife ponders what kind of pizza she has. It is a formality because she always has a margharita with pomodorini on them.

Breakfast near Loretto. My father is trying to have every pizza in Milan before he leaves. I am not sure if he understands he will have to stay here more than a month to do that.

Nonno, behind us. Again.

His biggest beef with Italy. Graffiti.

Nonno said that there was no way he was going to guy a pastry from McDonald's.

A very happy little boy.

My wife did not believe that it was meant for cleaning feet. They showed her.

The ducks in the river by Cernusco. A couple were feeding them.

He was so excited to get on the ride.

Parker getting a little taken off around the eyes and ears while flipping through his favourite magazine.

Parker's face at one of its worst stages.

The pizza from the first night Nonna and Nonno arrived.

Fun Weekend

2007-07-30T06:32:00.001-04:00

A couple of days have passed since we spent a day in the hospital with Parker. We decided to use this time doing something fun and exciting for everyone. So, with that in mind we made back to back day trips around Milano.

On Saturday, we decided that everyone would take a subway ride to Cernusco and walk and explore the area surrounding the station. My wife and I were a little familiar with the area but the five of us spent over five hours walking through the streets and paths taking in everything it had to offer.

First, we began by walking north past a river and walkway through a park to a little village populated with small stores along the roadside. The buildings were extremely colourful and the store fronts were very inviting. As Nonna and my wife made there way from one store to the next, Nonno, Parker and I walked around exploring the rest of the village. On our journey we found two things of interest. The first was a gelateria, and the second was a small roller coaster for children.

When I first saw the ride from a distance, I knew right away that Parker would absolutely love it. In Canada there would be no way that Parker would be allowed on the ride at 18 months old but here in Italy the rules are very different. We decided that Nonno would be the best person to accompany Parker on the roller coaster; so, after purchasing two tickets and sanitizing the car very thoroughly the two of them got into the last two seats at the back of the ride.

Everyone but me all had a plan to tell the man in charge of the ride to stop the roller coaster if Parker was not enjoying himself. Me, I knew my son and that stopping the ride would not be a problem. The whole time Parker laughed and smiled as the roller coaster went around the track again and again. There was nothing frightening for Parker and the little monkey is definitely going to love going to Canada's Wonderland when he is old enough.

I had also mentioned that we found a gelateria on our exploration. To be honest, it is very easy to find them. Next to a caffe there is probably not an establishment that is more abundant here in Italy. Parker has tasted gelato previously but he absolutely loved sharing Nonno's chocolate ice cream with him. One spoon for Parker and one for Nonno. First Parker, then Nonno.

Yesterday, we decided that Sunday would be a great day for everyone to go to the Duomo together. The subway should not be as busy and if we left early in the morning then the heat on the subway should be bearable for Parker if we needed to put his plastic shield down.

As always, we began our exploration at Loretto. A street similar to Yonge Street in Toronto but with some beautiful architecture. It is normally a 45 minute walk to the Duomo from here but we took our time as we did some extra site seeing with Nonna and Nonno.

We decided to give my father the camera which may or may not have been a good idea depending on how you look at it. Nonno is not the fastest walker on the best of days so giving him a camera so he can take snap shots of everything from an espresso maker in a store window to the gold statue on top of the Duomo slowed him down even more. One of the good thing about it was that Nonno grabbed over 175 images to add to our collection of over 2500 images we already have of our time in Milan.

We had a wonderful time yesterday, walking to the Duomo from Loretto, then walking to the Castle and then to a church several subway stops from there. In total, we spent eight and a half hours on our trip yesterday. You would think that an 18 month toddler would complain a little bit during that time having to spend that much time in his stroller, but he didn't. Between his trips of being carried up and down the stairs in his stroller or the ice cream he shared with Nonno yesterday Parker was very happy.

When we got home, Parker was absolutely exhausted by the time bedtime came around. You know that “tired” you get when you fall asleep in a particular position and you wake up in the same position the next day? That was Parker both nights.

Wednesday is Parker's next trip to the San Raffaelle, for which I believe is only for blood work. Tomorrow, there should be an article containing only a plethora of images from the past few days. My wife will give me a hard time if I don't do it, so again I shall humour her.

Busy Bees**

2007-07-26T10:31:00.001-04:00

I have to say that having Nonna and Nonno here has made life a lot easier for us. Very much like it did when Nana and Gaga were here.

It has been an extremely busy week with all of the trips to the hospital we have done so far. Add to that that my wife and I have been feeling a little under the weather and are lacking our normal amounts energy has made things difficult for us to do everything we would normally do.

On Monday, Parker went to the hospital for a series of blood tests and an ultra sound of his organs. Tuesday brought more blood tests and a red blood cell transfusion to help decrease the number of toxic metabolites in Parker's blood. Wednesday, again some more blood to check for antibodies prior to beginning his first of three IgG transfusions. Today, Parker had his second transfusion of IgG and tomorrow will be his third. We are hoping that the IgG is enough to combat the antibodies in his blood causing his neutrophils to die off. If there are any other antibodies that we are unsure of yet, we hope that they too will be removed by the IgG (immunoglobulins – Gamma).

Parker's face has been clearing up very nicely over the past week. The size of the spots have yet to decrease but the deep red colour has faded dramatically. Since changing his blood pressure medication and putting a special cream on his face we have seen quite a bit of an improvement.

The last few nights Parker has been sleeping in Nonna and Nonno's room. He sleeps through the night and for that reason he is a great roommate. It has allowed my wife and I to sleep a little longer in the morning since my parents take him for a walk if he wakes up earlier then they do.

I think the little monkey has been sleeping better because all of the walk and fresh air he has been getting lately. I thought it was hard keeping up with all the walks my wife wants to go on but my mother is impossible to keep up with.

I have to say that is also nice having her here because when I don't feel like cooking she takes over. Between my mother and I everyone has definitely been eating well over here.

I am not sure when we will get some more results about Parker as our doctor is on holidays and he normally gives us any results that we need, in addition to answering all of our questions. However, when I do have some results, I will make sure to let everyone know about them.

**I have placed a note hear about today's title because I thought it warranted one. The original title was "Bust Week" but after telling my wife the title she began to laugh hysterically as she watched "The Young and the Restless". I asked her what was wrong and she replied as she normally does when she finds something very funny. Very quickly she blurted out, "You should have called it Busy Bees". I normally discard my wife's strange sense of humour but I thought I would humour her this one time.

Information

2007-07-22T07:45:00.001-04:00

I have been meaning to publish a new article the past week but for different reasons I have been unable to. The Internet had been down for several days which kept me from writing initially. Secondly, I have been busy with the arrival of my parents here in Italy. With so much happening lately I thought it would be easiest to write large article with subtitles to keep it organised. That said, I shall begin with the first and probably most important topic, what is going on with Parker and gene therapy.

The Meeting
On Friday we had a meeting with Dr. Aiuti along with the doctor overseeing him. Several tests had been conducted earlier in the week including tests to check his blood for the different types of cells, the amount of toxic metabolites in his blood along with the another bone marrow aspiration.

Parker's most recent blood tests have shown extremely low levels of engrafted white blood cells compared to the amount he had when he was first transplanted. In addition, his toxic metabolites were extremely high, most likely due to his particular mutation. That said, his metabolites did decreases significantly one week ago. The most recent test showed that although they did decrease slightly again it was not dearly as dramatic as previously and Parker still has more metabolites than any other patient at this point in the study.

We spent the days prior to the meeting quite worried that Parker's bone marrow aspiration was going to show something very similar to what was present in his peripheral blood. Parker did not have very many engrafted cells left at all. Why did we think this? Pretty much because everyone thought this was a very good possibility. We heard during the meeting on Friday that they were positively surprised that this was not the case. After seeing Parker's actual numbers my wife and I were happy to see that they had actually increased slightly. One type of the cell had actually increased dramatically. At this time we also found out that although Parker did not lose his engraftment, he is at the lower level of engrafted cells compared to most patients in the study. That said, they do believe that Parker can be cured with the low number of engrafted cells if they do increase in number over the next months.

Remember that the blood cells are produced in the bone marrow so if there are no cells at the source to produce blood cells then there will never be any cells in the peripheral blood. So, that means there must be something that is causing the cells to not be present in the blood. Tests revealed that Parker has anti-bodies to neutrophils and as a result he is attacking the neutrophils (all of them – ones containing the ADA gene and ones that do not) and as a result he does not have nearly as many ADA producing neutrophils as most people.

In hopes to remove the antibodies Parker will undergo a high level dosage of IVIG (gamma globulins). They do not believe that Parker has a lot of antibodies since his neutrophils count is still relatively good (> 1000). They will test this week to confirm that there are no other antibodies in Parkers blood getting in the way of the cells in Parker's blood.

They also feel that is necessary to help Parker remove some of the toxic metabolites so they do not cause any damage to his organs in the long term. They will do this by giving him a red blood cell transfusion. This will allow the metabolites to decrease at a steady rate in his blood as the transfused cells contain working ADA genes.

Of course this is not exactly what we had hoped when we came to Italy but it is pretty much the best news we could have gotten from the meeting. Although it is not guaranteed that the gene therapy will still work they are still optimistic. Parker will have another bone marrow aspiration in one month to see what is happening to his engrafted cells.

What are he hoping for now? That Parker has no other antibodies present. That the IVIG does its job and is sufficient at killing the antibodies. That after this, Parker begins to produce significant numbers of neutrophils and that he can keep his toxic metabolites under control. And finally, that the bone marrow aspiration he will have in a month will show an even higher number of engrafted cells compared to this week.

We have always said that Italy was the place we needed to come to find Parker a cure for his disease. We continue to believe this. We have a very special team of doctors here and we trust them to do what they feel needs to be done so that our dream will become reality. Dr. Aiuti has put an enormous amount of time and effort into helping our son and we are extremely appreciative of him.

Parker's Face
That last time that I wrote about Parker's face we were under the impression that they were caused by mosquito bites that had become infected. The result was for Parker to begin Augmentine in hopes to help fight the infection and remove the blemishes from his face.

Unfortunately, after the next few days we did not see any improvement in his face. The red circles actually got bigger and brighter. As a result, we took Parker to the dermatologist on Monday morning. He felt that there was a good possibility that it was caused my a reaction to one of his medicines.

Over a week and a half ago I had thought that may had been the case but never mentioned it to anyone. See, Parker started his blood pressure medication (Norvasc) at relatively the same time he go the little red dots on his face. As the days passed and Parker took more Norvasc at an increased dosage the red circles increased in colour and diameter.

On Monday, they decided for Parker to stop taking Norvasc and to begin a different blood pressure medication, Triatec. Tuesday was the first day he did not take Norvasc and now, after some peeling the redness is starting to go away and the size of the circles are starting to decrease.

We were told that if this is a reaction to Norvasc that there should not be any scarring and it should take a good two weeks for the redness to go away.

Nonna and Nonno
I have to say that the best part of this week has been having my parents here to help us deal with all of the stress surrounding us.

My parents arrived in Milan on Wednesday evening at the Milan Central Train Station. They flew into Rome originally and after a five our train ride I met up with them at Milan Central.

Nonna and Nonno have been a burst of energy for the three of us. To be honest, Parker did not see them too much prior to Milan but he has not stopped laughing for four days.

Of course, everyone goes for there daily walks around Milano Due and no one seems to love it more than Parker and his Nonna. My wife and I do as much as we can, all the time but 18 months of taking every possible precaution has drained us of most of our energy. Yes, we always took Parker out for his daily long walks but Nonna has now added two more walks for Parker. One when she gets up in the morning and another one which she drags Nonno for after dinner. Parker absolutely loves it.

There is so much that I want to write about in this section but to be honest I will just say this. I have never felt so happy to have my parents with me. I did not expect them to come to Italy to help us but I am so glad that they did.

Il Pinocchio, la zanza e un infectione

2007-07-15T15:22:00.000-04:00

I decided to write two articles in as many days because I have not been that faithful lately when it comes to updating the blog. Parker is currently down for his nap and my wife is about to go outside to catch a few rays during the next couple of hours. That gives me time to sit down at the computer to write for a bit.

I had mentioned a little while ago that Parker's stroller had broken in several places from over-use here in Italy. My parent's bought it for us before Parker was born. It is a Peg Perego which is an excellent stroller and happens to be Italian made. So, a week this past Friday I took a subway to a baby store that is also a Peg Perego representative. They were able to take the stroller and get it repaired at the factory about an hour away from Milan. To be honest, this was probably the only thing we have ever bought that we actually sent the warranty card in. The result, they repaired the stroller by replacing two main parts and it only cost me the subway ride to the store.

I picked up the stroller Friday afternoon, one week after handing it in to them. While I was there I noticed that they had alot of nice things for babies and toddlers. First, I picked up Parker a set of large Lego type blocks. He absolutely loves playing with them. Secondly, I noticed something that my Nonna had brought me back from Italy over 30 years ago. I saw a wooden Pinocchio. It was almost exactly the same as the one I had when I was a child. I had to get one for the little monkey. I was very surprised how much Parker loved the wooden boy. Parker carries him around everywhere. I actually feel sorry for his monkey because he has taken a backseat to Pinocchio since yesterday.

Now, I am sure you have noticed from the images that Parker received a few mosquito (zanza) bites last week. We are pretty sure that it happened inside the residence while he was sleeping. We did not think too much of it and felt assured that they would go away by themselves. The doctors had seen them when they were small and said to wait a few days and we should see them start to get better. That said, yesterday we woke up and noticed how bad they looked and decided to take him back to the San Raffaella to have them looked at.

Apparently, they have become infected and without an immune system Parker needs some help to rid his skin of the staph bacteria that is most likely the cause of it. Parker restarted Augmentine yesterday and we hope to see an improvement by tomorrow. The last thing we want is for the infection to get any worse than it is. Parker has such a beautiful face that we want to rid him of the penny size welts that he currently has.

Tomorrow we will go to the hospital for them to look at his infection and for them to take some blood. Let's hope that both the infection and the blood test yield some positive news.

I am sorry for not mentioning this sooner but with everything that has been going on I have been preoccupied. We are very thankful that Auntie Natalie spent last week with us here in Milan. It was a very stressful week and having her here made things a little easier for us. Parker really enjoyed playing with her and is sending a million kisses her way! It was also great for my wife to have her best friend here.

More Tests Next Week

2007-07-14T15:12:00.000-04:00

I figured that everyone who is not directly related to Parker are probably wondering what has been going on the past few days. Emotions have continued to be all over the place the past few days as results from tests come in.

I had mentioned that Parker's metabolites had decreased significantly recently. On Friday, we found out that Parker's red blood cells that had increased in the amount of ADA activity they had produced had once again decreased. This supported the idea that the therapy may not be working. Since the doctors are very curious to know what is going on with Parker they have requested that Parker have another metabolite test this coming Monday and then have a bone marrow aspirate on Wednesday to see what is happening in his marrow.

Something is happening we just do not know what. We have come to grips that there is a very good chance that the therapy has not worked. Something has kept it from working. You can only imagine the stress that we have been under as we tried to figure out how to go on from here.

Later, on Friday afternoon, my wife spoke with the lead doctor and asked if there was any possibility that if it is confirmed that the therapy did not work if they would be able to repeat it. He replied that they would do there best to find out why the therapy did not work, and then if possible they would do something to counter the reason during a second attempt so it would be successful.

The team of doctors here at TIGET are in my opinion the best in the world when it comes to ADA deficient SCID. We believe that in the end they will be successful in finding a way for Parker to live a normal life. Yes, if they have to repeat it we will be in Italy for quite some time but that is something we have no problem doing if Parker can do everything else a little boy can do.

Please continue to keep Parker in your thoughts and prayers. We hope that Monday's and Wednesday's test results bring some encouraging news.

Disappointment, Encouragement and Uncertainty

2007-07-12T08:03:00.000-04:00

Before I begin, I have to admit that I have never felt so much stress in the span of one week in my life. Everyone that reads the blog regularly knows that we have been waiting for some results the past few days in hopes that Parker has a chance of making the gene therapy work.

I had mentioned previously that Parker's metabolites had been increasing at a very high rate. The metabolites give his new cells an advantage over the old cells but for some reason we were not seeing the effects of the advantage. We were waiting for Parker's blood test results to arrive on Tuesday in hopes that his toxic metabolites either decreased or stayed relatively the same. What we got instead was our doctor telling us that he was not very optimistic anymore, that the toxic metabolites not only increased but they doubled and Parker had lost most of his engraftment when they looked in the peripheral blood. He was not ready at the point to say that Parker was the only patient who the gene therapy did not work for but he did say that he had the least number of engrafted cells and the highest number of toxic metabolites compared to any other patient so far.

Everyone was dumbfounded. No one could have predicted that Parker, the best patient to enter the study was going to be the only patient that would not display relative success with gene therapy. My wife cried. Me? I just could not understand what was happening.

The only good thing that came from our conversation was that for the first time the red blood cells had shown an increase in ADA activity. When Parker had his bone marrow aspiration he was given a red blood cell transfusion. Of course these are not his cells and display ADA activity. But as the days passed these cells died and the ADA activity from his red blood cells constantly decreased. What was surprising was the fact the Tuesday's results showed a 50% increase in ADA activity from these cells. The only way this could be would be for Parker's bone marrow to have produced them. The team was not convinced that this was the case and that it was not just an error in the test so they decided to repeat the test and put a rush on the results.

So, the past two days we have been miserable. We have been trying to figure out what we would do if the gene therapy did indeed fail for Parker. Yes, we were hoping for some miracle but being realistic we did not expect anything to get better when the results arrived later this week. No one here in Italy was very optimistic.

Last night, the phone rang close to nine in the evening. It was our doctor. He said that he did not want to wait to give us some good news. Parker's metabolites had decreased 30% in the span of one week. He also said that they now feel they can predict what is going to happen with his metabolites. They should slowly decrease over the next weeks. Does this mean that it is working? Does this mean that we are out of the woods? We don't know. We will probably meet with our doctor tomorrow and get a better understanding of what is going on. We do not really know what is happening in Parker's bone marrow. Did his cells proliferate and increase or were they all overstressed and die off. We don't know. We just hope that the metabolites do continue to decrease and his white blood cells begin to increase steadily.

We just want this to work so that Parker, his mother and father can live a normal life eventually.

Thank you to everyone who has been praying for Parker the past while we know that every prayer helps.

Nonna and Nonno Coming!

2007-07-08T14:11:00.000-04:00

I received some very good news yesterday unrelated to Parker's treatment. My parents (Parker's Nonna and Nonno) have decided to join us here in Italy for a month. I was so surprised when they told me and I really did not know what to say. I have been so stressed lately wondering what is going on with Parker's numbers and metabolites that to be honest I really did not say too much when I found out. I have just been extremely overwhelmed with emotions the past day knowing that my family is coming here to help.

I know that Parker is really going to enjoy his time with his Nonna and Nonno and I can't wait to see his face when he does. My parents are flying in to Rome and will take the Eurorail to Milan where I will eventually meet up with them and bring them back to Milano 2.

We hope that Parker's metabolite results are ready tomorrow and that they show a decrease in number. I apologise that this is not a long article but I still have a lot on my mind with Parker and I find it difficult to write when I am under a great deal of stress. That said, I did want everyone to know how happy I was that my parents were going to be coming to Milan.

When Does Life Get Easy?

2007-07-05T10:51:00.000-04:00

I know that it has been a while since the last time that I wrote but I find it very difficult to write when things are not going as smoothly as we like. That said, I am a little less stressed at the moment so I thought it would be a good time to write.

The latest bit of information that we have obtained is that Parker has the most toxic metabolites after transplant compared to the other 11 patients they have had here in the study. What does this mean? No one really knows yet. They toxic metabolites are removed by ADA and for that to happen there needs to be ADA in his system. It can be expressed either by his cells (which we want) or by giving to the body external using PEG-ADA. During the time in which the toxic metabolites are high his new cells have an advantage over the old cells and as a result, they can proliferate and increase in number. This is what we want. The new cells will produce white blood cells that go out into his blood stream, produce ADA and remove the toxic metabolites. For this reason, we remain optimistic. However, Parker's white blood cells did not increase yesterday. They decreased by 100. This is neither considered an increase or a decrease so it does not give us too much information. On Monday, we hope to obtain results from one of Parker's blood tests to see if the toxic metabolites have once again increased in numbers, stabilized or decreased. We are praying that they do not increase again.

As I had said, we do not know why his metabolites are so high. It could be due to the fact that Parker is taking longer to engraft, or maybe it is his particular mutation in his gene that causes him to produce metabolites at a higher rate than most children. It could also mean that the gene therapy did not work. We do not know. We just know that we want his white blood cells to begin to increase significantly to help remove the metabolites and for the result of the metabolite test to come back with a positive result early next week.

Parker wore a blood pressure monitor for 24 hours yesterday to get a better idea of his blood pressure. Apparently it has been quite high over the past weeks and they want to control it. Unfortunately, the monitor did not get very accurate readings over the 24 hours so the results were invalid. That said, Parker will begin taking medication to control his blood pressure while the toxic metabolites are causing his pressure to be elevated. When the metabolites so decrease (I am being optimistic) then his pressure should also decrease and he will not longer need therapy to control his pressure.

My wife's best friend arrived in Italy on Tuesday and we are very happy to have her here. Parker loves playing with her and it is nice to have an extra pair of hands around here to help. Thanks for all your help and support Auntie Natalie.

We did speak with Dr. Aiuti today and his still seemed optimistic with Parker and his progress. We just need to wait for more data to come in so they can have a better picture of what is going on with Parker. The fact that Parker is doing extremely well clinically definitely gives everyone more time before anything must be done to intervene in the natural process of the gene therapy.

As soon as we know more information I promise to update everyone. Parker gives blood on Tuesday of next week and we will be able to get a better idea of his white blood cells (including neutrophils) then. So, we hope to know more then.

Walking with Mom and Dad

2007-07-01T02:38:00.000-04:00

Again, I have decided to upload a series of images for today's article. There is nothing really new around here except that now that Parker is walking or running everywhere we are going crazy chasing him. Everyone told us that once he starts walking and has a different perspective that we would spend our time making sure that he does not get into everything. Well, if you check out the newest video you will see what I mean. In the past few days I have added three videos including the two that I just uploaded. Check them out.

Mom and Parker posing for the camera. Parker knows that he has the best looking mom in the whole world.

Parker and daddy love watching soccer together at the pitch. Yesterday it was the over 60 men playing.

Now, that we are out of isolation we go for walks twice a day again. We always make sure to bring the camera with us.

Mom and Parker getting their story time in. Parker loves story time. Check out the video to see why Parker was laughing so hard after story time.

Parker has the coolest set of wheels. No wonder he is smiling.

Update and Images

2007-06-29T12:46:00.000-04:00

The Internet connection in our room has not been the greatest and for that reason it has taken me a while to post today's article. Parker's numbers came in last night and they increased to within 100 neutrophils of Parker not being considered neutropenic. As for everything else? Parker's bicarbonate level was low and as a result he will be increasing his dosage by half a pill each day. In addition, Parker's blood pressure is a little bit high but too be honest Parker does not like getting his blood pressure done and is usually a little hyper prior to having it being taken. As a result, they want to take his blood pressure on Monday afternoon. If it is high they may give him a medication for it. To be honest, I will not let them put him on a medication to control his blood pressure unless I am convinced that it is necessary.

Check out the last video I made for Parker from his time in isolation on the right side bar. Now, the rest of today's article will be only images. So here they are:

Last night's dinner. Parker also had some salmon but did not enjoy it nearly as much as a grilled cheese sandwich.

I know that I am cute. Really cute.

Mom and me checking out my newest video.

Mom, fish cracker please.

Finally, I don't like having to wait. I am a high paid actor.

Okay, dad it was funny for like a second, now take them off.

I am not sure if I hate these gloves or this stupid hairnet more.

Trip to the San Raffaele

2007-06-28T07:39:00.000-04:00

It has been a few days now that we have been home and everything has been so much better as a result. Parker has continued to run around the room from toy to toy as he works on his new skill. He still likes to use his puzzle but instead of putting all of the shapes back into the correct spots as we had been accustomed to seeing he now takes the pieces and places them in different spots of the room. Two go on a chair, a couple more go on the base of the high chair, and then a few go on the window sill. He has it all organised.

The past couple of days have been very difficult for my wife, as her parents (Nana and Gaga) left early yesterday morning for home. They helped quite a bit when they were here and we are going to miss them a lot now that they are gone. Parker really enjoyed the time he got to spend with his Nana and Gaga the past two and a half months. He loves them very much!

This morning we made our first trip back to the hospital. I had mentioned in my last post that we would be going back to the hospital today so that Parker could give a blood sample. We should hear the results of the sample later this evening. Once a week, Parker will go to the San Rafaelle for his examination and give blood. Some visits will be more involved then others but for the most part they should be straight forward.

We noticed today that our Peg Perego stroller is broken in a few places. It is a great Italian made stroller that my parents had gotten for us before Parker was born. I will look on the Internet later to see if I can locate where the Peg Perego building is in Milan (if there is one) so that we can get Parker's stroller repaired. For now, it works but we will only use it for trips to the hospital and will use his push-tricycle for his walks around Milano Due.

Parker has continued to enjoy the food he is getting with mommy and daddy. Tonight we are having salmon and risotto. Parker has never had either before but we are pretty sure he will enjoy them both. We already know that Parker loves fish and salmon having so much flavour I am pretty sure that we will devour it in no time.

I have recently purchased and read a paper on SCID ADA written by a number of European and American doctors who specialize on the treatment of SCID ADA. Dr. Aiuti was one of the members of the group so it was nice to be able to read more information on the subject. The paper summarized the treatment of SCID ADA via gene therapy, bone marrow transplant and PEG-ADA. If anyone is interested on the subject I would suggest that you take a look. It was published this year and I know that I would have found it extremely valuable a year ago when we were deciding on Parker's option. That said, being able to speak with Parker's doctors have always been the best way to obtain valuable information about the disease.

Sadly, we have some news to share. One of Parker's best friends passed away a couple days ago. He was one of the only children that Parker saw regularly while he was at home. Three year old Evan had a different form of SCID than Parker but also spent time in isolation at Sick Kids with Parker. Parker saw him regularly at the immunology clinic. Evan was full of energy and always seemed so happy when we saw him. Evan and his family are in our thoughts and prayers and we hope they are in yours as well.

No More Isolation

2007-06-26T04:11:00.000-04:00

It has been some time since I sat here at the computer and wrote an article for the blog. Things have been quite crazy lately and with that I have found myself unable to find the time or the energy to write. That said, today when I awoke I did so with a new found energy. Yesterday afternoon, my wife and I left the isolation room at the San Rafaelle to begin the next phase of our life here in Italy.

The past few days we have waited in anticipation for Monday morning when Parker would give blood and we would be able to find out what his white blood count and neutrophils would be. They had taken his blood on Friday and his numbers had dropped slightly one more time. His neutrophils were still over 500 but were far from being 1000.

On Sunday, we requested that Parker have his blood taken at six in the morning on Monday so that we would have the results back sooner rather than later. By nine on Monday, Parker's white blood cells had reached 1400 and from my data I was able to estimate Parker's neutrophil count to be either 900 or 1000. I was correct and by eleven we had found out that his neutrophils had once again reached the 1000 mark.

We then packed up our room in anticipation that we would be leaving in a few hours. Although it did take a little bit of persuading to let us leave yesterday we did make our way back to the residence by two in the afternoon. They were hoping that we could stay for a couple of more days so they could track Parker's white blood cells but felt comfortable with us returning for a blood test on Thursday. They know we are very clean and capable of administering Parker's medications so it was agreed upon and we soon left the San Rafaelle.

We were glad that Parker no longer has to take Augmentin for precautionary reasons. It caused his bowel movements to be very wet since it can interfere with the bacteria in the intestines. We also found that Parker was not eating very well the past few days in isolation. Everyone was getting sick of the food after 45 days. That said, when Parker came home he demolished six roasted potatoes and and whole grilled cheesed sandwich in about five minutes. Now, he is currently eating a large banana with his cereal. Parker missed the good food I always made him here at the residence.

The first day we were in isolation one of the nurses had commented on how much Parker laughs and how it comes from his stomach. To be honest, we had not really heard him laugh like that for a long time, but when Parker came home yesterday we heard it quite a bit. Parker spent quite a few hours getting used to his surroundings.

When we brought Parker to the hospital a month and a half ago, Parker was just learning to walk. Unfortunately, Parker was stuck in his crib for the duration of his stay and never got to work on his walking. I could not believe how well Parker walks now that he is out of isolation. I guess walking on a soft mattress increased the strength in his legs and improved his balance quite a bit. Parker has excellent balance and walks extremely well. He does not walk on his toes and always makes sure to lift his feet off the ground as a result of walking on a bed for so long.

We also decided to take Parker for a walk yesterday in his stroller around the Laghetto. When we arrived to where the turtles normally are we met a woman with a dog who said in English, "hi". She just moved here two days ago from Holland with her husband and three children. When I asked her if she had gotten used to Milano Due yet, she had said that she had found a website on the Internet with images of exactly where they were going to be staying. Would you believe that it was actually this website that she had been visiting to see what their new home would look like. What are the chances of meeting someone here in Milano Due from somewhere else in the world who had actually visited our site. I guess with almost 180,000 hits you are bound to meet people who have been to your site once in a while.

Today, Nana and Gaga will watch Parker for most of the day since they leave for Canada tomorrow morning and we want to make sure they get as much time with Parker today as possible. We are very thankful for everything that they have done for us in the past couple of months as it has definitely made our life more tolerable.

Stress (By Mom)

2007-06-22T02:51:00.000-04:00

Lately it feels like our life has been a completely exhausting roller coaster ride. Yesterday, in particular was of the most stressful days that we have experienced in a very long time. Parker's neutrophils and white blood count have remained stable for the past week. On Monday, we had received very promising numbers and were eagerly anticipating that moment when we could finally take Parker out of that crib. However, with suitcases packed, a very clean hotel room and extremely excited parents and grandparents this was not the case on Wednesday morning. When they drew Parker's blood on Wednesday, they noticed that his numbers had not changed at all from the previous Friday and that Monday's results were more of a false positive since they drew his blood peripherally and not through his cathedar. Therefore, there was likely a concentrated amount of cells in that particular area. The doctors felt that we should wait until Thursday morning to draw more blood and see the trend of Parker's numbers. If Parker's numbers indicated that he was still mildly neutopenic then we could have left because his numbers would have been stable and constant. This was not the case yesterday. Parker's numbers actually decreased slightly which was obviously a major stress and concern for us. When the doctor on the unit came to see us, we were given a few different possible explanations for this. Perhaps this was just a fluctuation in Parker's bone marrow that would take some time to truly stabilize. Perhaps it was the toxic metabolites hindering the production of his bone marrow or the dreaded one- a virus that they were unable to detect.

I think that this was the breaking point for all of us. The past 17 months have been the most stressful months of our life. We have done everything to keep Parker healthy including taking a leave from our jobs for over a year in order to ensure that Parker is in the safest environment possible. This alone would be a major financial stress to any family and rightfully so. We have moved to a foreign country where we do not speak the language in order for Parker to receive the best possible treatment from the best medical team in the world. We have left our home, family, friends- our support system with hopes that short term sacrifices will lead to long term rewards for our son. I say all this because it is part of the very big picture we are dealing with which our sick child. Obviously, Parker's sickness is the most important stress, but all of the other stresses add to this picture and can make life feel very overwhelming and unfair.

We have always been used to Parker doing extremely well. He has always had very positive results and does not experience any negative side effects of ADA. For this we are extremely grateful and know that our hard work has definitely made a difference in Parker's outcome. We are used to Parker always being the best, so yesterday was a shock when we thought that Parker was actually doing the opposite of what he should. I could not stand the thought of being in that hospital any longer. We are purely exhausted on every level and just want to bring
him back to the hotel so that we may try and rejuvenate. My parents have been a tremendous help to us. I honestly do not know what we would have done without them here. They have been such a support to us and have helped us out a great deal at the hospital. My mom has been spending quite a few nights so that we may get some rest. I know that she is exhausted and that her back is in a lot of pain, but she never complains. We want them to know how thankful we are. I know that they have made many sacrifices to be here with us in Italy- especially spending quality time with their other grandson who was born in January. I know that our family understands that their place needed to be with us during this extremely difficult time and we look forward to being together again as an entire family unit and not one that is separated like this.

Dr. Aiuti came to see us last night at the hospital and had a very thorough discussion with us. He is such a brilliant man and answered all of our questions and listened to all of our concerns. He was very positive and reassuring. He did not seem worried about Parker and said that this is actually normal. Although I think that a fluctuation usually happens a lot earlier than day +34. He does not feel that Parker has a virus because he is clinically doing amazing. As a precaution, they will complete several tests today to make sure that they are not missing anything. He feels that it is likely the toxic metabolites which are hindering Parker's bone marrow which is essentially what we want. We want to know that his new cells will have an advantage over his old ones. This cannot be confirmed though until test results come back. On an extremely positive note, Parker's bone marrow aspirate results came back indicating that Parker has en grafted which is wonderful news and that although the numbers are extremely small- he is producing T, B and NK cells (the cells which he is normally unable to produce).

We are hoping that today will be a better day and that our stress can slightly diminish. I know that we will be extremely worried if his numbers do drop some more, but I am trying to stay focussed and positive that his numbers will start to increase. We will be at the hospital until at least Monday or Tuesday. Although we desperately want Parker to come back to the hotel, we also do not want to put him in any danger and trust the medical expertise and decisions that the doctors are making. There is a new video on the right sidebar for June 21. I think it is the best one yet and has definitely made me laugh in the past 24 hours. Make sure that your volume is up. This is what the little monkey is like for us each day now. He likes to be heard just like his mom!

Ciao!

Better Day

2007-06-18T10:07:00.000-04:00

Today was a much better day than the past few we have experienced. It is not easy living in an isolation room for 36 days so of course you are going to have some days that are worse than others and some of the experiences are not going to be positive. With that said, we are ready to look forward and focus on how well Parker is currently doing.

This morning it was decided that they would extract blood from a peripheral instead of trying to insert a needle into Parker's cathedar. Parker is not recieving an IV today or tomorrow so there really was no reason to poke him in his chest. Parker's results came back today and I am very glad to report that his neutrophils are exactly where I expected them to be on this day. They are well over 1000 and with that we are expecting to go home on Wednesday afternoon as long as his neutrophils come back over 1000 on Wednesday.

We asked if Parker would receive an infusion of IgG before being allowed to go home and after checking that the last time he had IgG was on day +8 and today is day +31 it was decided that he would most likely receive an infusion of IgG on Wednesday morning after they take blood from his cathedar. Of course, this can all change but to be honest, I would highly doubt that it would.

As a precaution, we are having our residence room cleaned from top to bottom and the carpets cleaned and shampooed prior to Parker's arrival back to our room.

There are definitely quite a few nurses that we are going to miss once we leave as we have made some wonderful friends while being in the bone marrow unit. However, we will continue to go to the hospital once a week for three months and I am sure that we will make sure that we stay in touch with them. We are extremely pleased with the treatment we have received at the San Rafaelle. They medical team there is among the best in the world and have always been willing to accommodate us by answering any questions that we have had about Parker's treatment.

Difficult Days

2007-06-16T08:52:00.000-04:00

I am at home right now, so I thought I would take some time to update the blog. Life at the hospital has been more difficult lately than normal. I have been ill lately so my wife has been doing most of the work with the help of Nana and Gaga.

I know that I normally try and focus on the positive when I write my articles but the last few days have been very difficult. We have now been in isolation for 35 days and although that is nothing compared to what we have done before it has definitely taken its toll on us. Me? I guess the stress of it all has caused me to be stuck at the hotel with a box of tissues and chicken soup that I made from scratch yesterday. My wife? Well, she is emotional during the easiest of times and when things or people are less than fair to her it makes it that much harder. I am not going to be specific with my complaints but I do want to be able to look back and remember when things got difficult for us and this is just enough to jolt our memories years from now.

Parker's bone marrow aspirate on his right leg is starting to look much better. Although the left hip looked great when they were done, there was some difficulty with extracting the marrow from the right hip and as a result there was some bleeding afterwards that I had recently mentioned. Now, the bruising that is left is starting to diminish and as a result we feel much better about it.

Parker's blood results that came in yesterday were not as great as I had predicted. I was hoping that his neutrophils would have been greater than 1000 but they remained unchanged at 800. Regardless, I am pretty sure that on Monday when they do blood they should be at least 1000. As for his platelets? They are in the normal range now and will fluctuate throughout that range.

Lastly, after three attempts to change Parker needle in his cathedar they decided to take our advice and leave it out until it is needed next. As a result, they will try and reinsert the needle into the cathedar once they need blood on Monday. Currently, Parker is getting bicarbonate orally and the antibiotic which he was receiving everyday through an IV has been changed to one that can also be administered orally. I sure am glad that Parker has gotten much better at taking his oral medications since he gets more than my Gran-Nana did when she was over 90 years old.

Check back on Monday to see if things are getting any better. I am sure they will.

Bone Marrow Aspirate Today

2007-06-13T11:10:00.001-04:00

I was going to write yesterday to let everyone know that Parker was having his one month bone marrow aspiration today but I fell short on time. However, Parker did have his aspiration this morning at nine and it went well. They made five holes this time, two in one hip and three in the other. Normally there is very little bleeding afterwards, if any but today there was some in his right hip that we needed to change the gause before the first hour was up. Several hours later, there was some more blood accumulating but not nearly the amount the first time. My wife is waiting for the doctor to examine Parker's hip. We are just being cautious as we always do.

Parker's neutrophils rose a couple hundred over the past couple of days. After speaking with the doctor we are expecting Parker's neutrophils to increase more dramatically over the next few days. Parker's neutrophils are well over 500 now and we are just waiting for them to reach 1000 so he may come off of the antibiotic (precautionary during neutropenia). I am expecting Parker's neutrophils to be 1000 by this Friday. Let's hope that I am correct. I have been plotting all of Parker's blood results on a graph and comparing it to earlier data and what the doctors tell me I think we are good to go.

Once this happens, Parker will begin bicarbonate orally and once we see that Parker can tolerate it and it is effective they will let us return with Parker to the residence. We are expecting that this will occur by the end of next week. Of course, we wish it was sooner.

One of our favourite nurses is leaving the hospital tomorrow for a new hospital in Milan. We will definitely miss her and wish her all of the best. We will make sure to give her Parker's website address so that she can keep up-to-date on his progress.

Everything continues to be going well. Check by on Friday to see if his neutrophils rose above one thousand.

More Images...

2007-06-10T02:30:00.000-04:00

Parker trying to grab the camera from daddy. Do you know that the word camera in Italian means room?

Parker carrying his puzzle board over to daddy for a reason I am unsure of. He is strong though and has fingertips like Spiderman.

Mommy feeding the monkey. I cannot wait until we get back to the hotel with Parker and we do not have to bribe him with TV to eat. He wants to feed himself and will have nothing to do with the food if we try and feed him. The result? The Backyardigans.

When Parker is not putting his puzzle pieces into the puzzle or throwing out of the crib, he likes to move them from one side of him to the other. He is currently moving them to the left side of him.

It is suppose to be nap time but I guess I forgot to give Parker the memo. Apparently he was under the impression that it was hide behind the pillow and peek over it time. It must have been my fault.

Remember that nice sorted pile of puzzle pieces? Remember?

A Day with the Monkey

2007-06-08T11:14:00.000-04:00

This morning I decided to go back to the hospital to help my wife during the morning watch. I usually go to the hospital at noon during nap so I can study and give mom a break but today I decided to come earlier.

Currently, mommy is with Parker as the cleaner is working inside Parker's isolation area (the flute). I had mentioned that I felt that the people who clean Parker's room was not what we were used to in Toronto but I must expand on that. See, there are two sets of cleaners that do the room. One that comes in early in the morning to clean outside the flute and one inside. To be honest, the people who clean inside the flute are just as good as the people who cleaned in Toronto. They are absolutely amazing. Very nice and extremely thorough. Today's cleaner also is in charge of bringing the food for the room. My wife is finding out now how she can get a hamburger or pizza as a meal instead of rice every day. To be honest, it is not only rice but whoever is here does get rice with their meal if they choose.

We are hoping that we get some nice weather soon. It has rained pretty much every day the past month so my wife has not been able to sit out in the sun. Yesterday we broke both of our umbrellas. One, as soon as we got home from the hospital and back to the hotel. The other when we were on the way to Esselunga to get food for dinner. We figured that we could just purchase a new umbrella at Esselunga but were surprised that they did not sell umbrellas. My wife picked one up later from Unes on her way back to put Parker to bed.

Today is another major testing day for Parker. It is day +21 which means that they do more extensive testing on Parker. Looking at his chart it looks like they are doing a flow cytometry test to differentiate the kinds of lymphocytes he has. For those of you who want to do what a flow cytometry test is you can click here to go back to a previous article I wrote.

I am not sure if I had mentioned in an earlier post but Parker had developed a bad diaper rash as a result of the bicarbonate and antibiotic that Parker has been receiving. We waited a few days very patiently (mostly) until a special creme arrived yesterday. It is suppose to be 80% zinc oxide. After only one day of using the new cream it already seems to have made quite a difference. Parker's rash on his bottom and front (near his genitals) where they place the sack to collect urine is diminishing significantly.

I have been writing this article off and on over the past couple of hours in a text editor here at the hospital. The doctor just finished her examination of Parker and I was surprised that Parker now places the end of the stethoscope on his chest for her to listen to. I am not normally here for this so when my wife told me that he has been doing that for a while I was surprised. Very good little monkey! We are very fortunate that Parker is developing like any other child and that he has not experienced any negative side effects of ADA to date.

Mommy is now doing some cleaning while Parker plays with his puzzle in his crib. I stole the outlet converter that we normally use for his DVD player so he cannot listen to music while he plays. Once I am done charging my notebook I will give the little monkey back his music.

We hope that everyone has a wonderful week-end. Lately, we have been missing home very, very much. Hospital life and rainy weather makes us think about all the things we would normally be doing if we were at home.

Ciao!

Full of Energy... as always

2007-06-06T10:54:00.001-04:00

Nana and Gaga are currently at the hospital with Parker while my wife and I are having a relaxing few hours before we go back.

Now, that I am rejuvenated, I have been back to my active role at the hospital. I spent most of yesterday with Parker and my wife which was very nice. In addition, Parker and I got to hang out last night during my night shift. I think the little monkey was excited that I was there because he decided to extend bed time by two hours. He watched me from his crib as he walked around its inner perimeter. Through the bars I could see him tackle his pillow every few minutes. I decided to grab a few shots of him as he roamed his domain.

Parker has the quirkiest little position he likes to be in lately. He sits in his crib like Robin Williams did in Mork and Mindy. With his bum high in the air, Parker rests all of his weight on his feet and head. His hands are not used one bit to support him. Where are they? Sometimes trying to touch his feet, sometimes behind his back. I get a big kick out of looking through his legs to say hello to him.

Parker had a nice visit today from the clowns that visit the children at the hospital. As mommy held him in her arms inside the isolation area, they did their bit from just beyond the imaginary door that separates us from the isolation area within the big room. They sang, and made him smile. Although the only thing that let us know that they were clowns was the red nose they had over their masks it was definitely a nice change.

Parker's neutrophils rose today for the first time since they started dropping. For the past few days, Parker has been severely neutropenic with his neutrophils below 500. This has been good since they wanted to see the neutrophils drop below 500 as it is an excellent indicator that the modified cells (BM CD34+) will have a sufficient unfair advantage over the cells currently in his bone marrow. Today, Parker's neutrophils increased by 100 which could indicate that his neutrophils are finally beginning to increase to their initial value of greater than 2500. This could also mean that they may stay at this level for a few days before increasing. Or, they may drop even lower before increasing. Regardless, we are happy that they did drop to a level that was wanted by his physicians.

I better go and start dinner, so I can get back to the hospital in time. I am going to be hanging out with the little monkey again tonight. Tomorrow Nana gets the job.

Keeping it Clean

2007-06-04T04:23:00.000-04:00

Most of you are still asleep as I write this but me, I just got back from the grocery store where I bought some nice healthy vegetables for lunch and dinner. I made sure to go to the grocery store that is a little further away this morning so that I got a few extra steps in to keep me healthy.

For those of you who are curious, my blood pressure has been absolutely fine the past few days. To be honest, I think cutting down on the chocolate (which I do not normally have) and increases the amount of water consumption (which I also don't normal have) probably made the biggest impact. Regardless, that is enough about me.

My wife, Nana and Gaga have been doing all of the work the past few days since I have taken a few days to rest. Actually, my wife made me. I am extremely thankful that Nana and Gaga have been here to do this. Nana has been doing my nights and Gaga hangs out with Nana during visiting hours. I may be going there this evening to sleep, but that is up to my wife's discretion.

As of yesterday, Parker is severely neutropenic. That means that his neutrophils are 500 or below. Normally, not having an innate immune system, in addition to an adaptive one (lymphocytes) would be extremely bad. But, as I have mentioned several times in the past couple of weeks, this is what we want. The Bulsulfan (chemotherapy) is suppose to have this effect so that the new bone marrow cells have a chance to work while the old ones are not. That is what is referred to as the unfair advantage or "making space".

Blood was taken from Parker this morning, and I am sure the results will return soon. We expect Parker to be severely neutropenic for a little while before his neutrophils begin to increase. That is why it is extremely important to be extra precautious around Parker during this period. My wife has recently been very focused on making sure that the cleaning staff that come in to Parker's room have been aware of the severity of the situation. Why? Because at times they do not seem to be. As for the nurses? Absolutely amazing as usual. We just want to keep Parker in the best possible state for the gene therapy to work with its most effectiveness.

Put Your Mask on First

2007-06-02T05:55:00.001-04:00

It is a holiday here in Italy. One of the many. I am unsure of what holiday it is because things have been so hectic.

Parker is currently at the hospital with his mom and Nana and Gaga will be going there later this afternoon to take over for a while. Me, I will be taking a break from the hospital for a couple of days.

I have repeatedly told my wife that throughout everything that is going that she always must take care of herself first. That she is useless to Parker if she doesn't. I always say to her, "Who's mask goes on first?" For those of you who are familiar to air travel you will probably recollect the instruction to passengers who are traveling with children. In the case of an emergency and passengers are required to wear oxygen mask, they always instruct you to put your own oxygen mask on before your child's. The reason? If you pass out because you don't have your mask on then you are unable to put your children's masks on.

The reason I mention this is because I have not taken my own advice. Recently, my blood pressure has been high and as a result Parker's doctor requested that I see a cardiologist. I will not get into the nitty gritty of it but I did go yesterday. No worries, I am going to be fine. It was nothing too major that I cannot fix with some changes to my diet and some rest.

I have decided to take my own advice as it is important for me to stay strong for not only Parker but also my wife. It is not fair to her to have to worry about her child and her husband being ill.

As for Parker, he is doing extremely well. His blood has not come back yet today but I am pretty such it will reveal that he is severely neutropenic as he needs to be for the greatest recovery.

Neutrophils Dropping -- Yeah!

2007-05-31T03:46:00.000-04:00

I am writing this blog, while still in bed from the hotel room. I have been extremely tired lately, so last night it was decided that after dinner I go to bed and try and get as much sleep as I possible could. Fourteen hours later I emerged from my sleep and have decided to write today's blog.

Yesterday afternoon Nana and Gaga volunteered to watch Parker during visiting hours (3p-7p) while my wife and I went to Esselunga to get some cleaning supplies and then have some dinner. I made a red sauce with fresh ravioli we got from Esselunga. It was delicious. It was then that I plopped myself into bed and suggested my wife stay at the hospital tonight while I got some sleep. I told her I would be at the hospital bright and early to relieve her. She agreed. At twenty after ten that night, I woke up to see my wife coming through the door. She said that her mother was staying with Parker for the night and she would relieve her early this morning. My wife gave Parker 400 mL of milk (yes that is 13+ ounces) before he fell asleep and she left the hospital. This morning she left here at 6:45am to be at the hospital for seven. The time in the hospital is taking its tole on us but we are surviving.

As I had mention before, it is easier when Parker is doing so well. To be honest, we don't know what it is like for Parker not to act strong. Even when he was sick at a six weeks old and hooked up to oxygen he still would do his tummy time with me. Now, Parker acts like a normal child his age. He succeeds at every turn during his battle with this disease. That is all we know of Parker.

I had mention in my last article that we were waiting for blood results to come back tomorrow to see if it appeared that Parker was becoming neutropenic. The answer is Parker is on his way to becoming neutropenic. He would actually be considered moderately neutropenic from his blood result yesterday. So, we are happy. As I said, Parker does whatever is asked of him and we have never know any different.

Today is considered day +13 and tomorrow is another day in which so more major tests are done on Parker to obtain data for the study. We are hoping and expecting that Parker's neutrophils are even less than they were yesterday. Apparently, they should increase as quickly as they decreased. So during day +14 and day +21 we will have to be even more strict than we have been while Parker has been in isolation.

One of the nurses gave Parker a beach ball the other day. Parker absolutely loves it. It took him a good few minutes before being able to throw it out of the crib so I had to re-sanitise it but he loves it none-the-less.

We are missing home quite a bit lately. It is going to be a few more months before we come home but we know that we have everyones love and support from home and that too also helps us get through our time in Italy.

Not Much to Update

2007-05-29T05:14:00.000-04:00

My apologies for not writing in a few days. To be honest, there has not really been much to write about. The weather has been less than great as of late. It has rained off and on here so I have not been home as often. I do my best not to walk in the rain as the last thing I want is to get sick.

Parker is doing extremely well as usual. I had mentioned that we are waiting for his neutrophils to drop. Yesterday was the first day that they were less than the previous day. That is hardly enough to say that they are beginning to decrease. Now, if we see something tomorrow that resembles what we are looking for then I would be more willing to say that we are on our way to neutropenia in the expected time frame. If this occurs tomorrow, I will be sure to let everyone know.

AC Milan are European Champions

2007-05-25T04:08:00.000-04:00

It was nine months ago when Parker watched Italy win the World Cup of soccer and we figured then it was a sign for us.

Two nights ago, Parker and I watched the finals of the European Cup between AC Milan and Liverpool. Parker wore his AC Milan uniform to show his support for his current home town. The game played on Rai Uno and daddy let the little monkey stay up with him until the game was over. To be honest, I highly doubt that I could have gotten Parker to go to bed with a TV on with people kicking a ball around on it only three feet from his bed. It was an exciting game with AC Milan coming out victorious (2-1) and Parker, daddy along with his nurse for the night were extremely happy. "Milan! Milan! Milan!", she would chant when she saw Parker in his uniform. I took many pictures of Parker with him wearing the same uniform that his favourite team was wearing that evening. I hope you enjoy them.

Today is considered day +7 and as a result Parker gave more blood than he normally does every couple of days so that they may obtain some more data pertinent to the study and Parker's health. Parker is currently on bicarbonate as it is a little low. This is apparently normal and is a result of the metabolites in his kidney. His kidneys are functioning fine; however, the metabolites have caused the bicarbonate in his body to decrease slightly. For those of you her are unsure what that means, I shall explain. Bicarbonate is alkaline; the opposite of acidic. It's main purpose is to keep the blood from becoming to acidic as it neutralizes anything that is acidic. It is a balance. So, to make sure that his blood is neither too alkaline or too acidic his blood is tested. Parker has received bicarbonate twice this week through an IV.

I know that I have mentioned it before but I want to say it one more time. The nurses in the bone marrow transplant unit at the San Rafaelle are absolutely amazing. Although not all of our nurses speak English, all of them see to be extremely caring and professional. Parker always laughs and smiles when he see any of them, even the ones that have had to poke him to obtain blood. The nurses have become accustomed to our schedule with Parker and are very flexible with us. They understand that we are very knowledgeable in regards to Parker's disease and that we have done and continue to do what is necessary to keep him healthy. They do his vitals when it is convenient for Parker and they do it in such a way that he remains happy. In the morning, before Parker and I wake up, they generally have to take blood from him. They always try to make sure not to wake me (I am a light sleeper at the hospital so I usually watch quietly from my bed). Two nurses come in at 6am with a small flash light, so that they may leave the lights off. Very quietly they attempt to pull blood from his cathedar while doing there best to not wake Parker. When they finish, they leave just as quietly, usually with a thumbs-up from me who watches very quietly. So, I just wanted to say to the nurses that we are very appreciative of everything that you have done for Parker and us while we have been in isolation.

I am sure that the results of day +7 will go very well. I will keep everyone posted.

Picture Summary

2007-05-23T04:04:00.000-04:00

Parker and Daddy posing for the camera for Mommy.

Parker loves to share his toys. Actually he waits for you to grab it and then drops it before you have a chance to get there. He gets a kick out of that.

Parker's favourite place to hang out in his crib.

The little monkey is watching his new favourite movie, Curious George.

Gaga got a chance to spent some time with Parker and the both of them loved it.

Mommy making sure that Parker's skin is well taken care of by putting baby oil on it. The chemotherapy can dry out Parker's skin and Mommy will not have that.

He does not normally sit like this in the crib but I could not resist taking a picture of him doing it.

The "Cheerios" actually taste quite good. However, Parker hacked them up when I gave him too many at a time. We decided to go back to the Gerber Puffs. They melt in your mouth.

Parker playing with his blocks that I bought from Esselunga. He pretty much wrecked them in less than a week so we have taken them away from him. The blue bin however, is his favourite. Unfortunately for us, he has learned how to throw that out of his crib too.

Pop Goes the Monkey's Line

2007-05-22T03:57:00.000-04:00

I just got back from the hospital and it was one of those long nights. Not nearly as bad as the night with the Busulfan but not easy to say the least. Parker was receiving an IV for bicarbonate as his level was shown to be a little low. I tried to put the little monkey to bed at 8pm as I normally do but he was not in the mood for sleeping. As a result he ran around his crib trying to get my attention for about 45 minutes or so. In doing so, he must have loosed the IV from the syringe that was administering it and as result, his blood backed up in the line and popped the line from the syringe. Of course, I could not see that it had done this in the dark so when 10 pm rolled around and I noticed it I called the nurse. Apparently, this happens on occasion so they were not too worried about it. Unfortunately, the blood in the line had begun to coagulate and it made clearing the line very difficult. Two nurses, and a doctor tried for over an hour but they did not have any success. As a result, they pulled the line from his chest and reinserted a new on into the porta cathedar (central line situated under his skin). It was close to midnight when it was all done and Parker had a second bottle of milk to help him sleep. They successfully gave him the bicarbonate this morning between 6:30 and 8:00.

I figure that I would use this time now to give everyone an update of what is going on and what we are waiting for in the next few weeks.

First, Parker is doing extremely well. He is clinically doing well and up to this point everyone is very excited with how he has done. The number of cells that were reinfused into Parker was extremely high as well as the percentage of cells that were transduced. For those of you who need a refresher whatthat means, I shall explain. When they take the cells they need (BM CD34+) they mix them with the vector. Meaning that the ADA gene that is housed in the vector is able to insert itself into the CD34+ cells. Not all of the cells that they take from Parker are able to successfully accept an ADA gene from the vector. The once that do are considered to be transduced and are the cells that allow Parker to produce ADA and remove the toxins from his body. Parker had a high percentage of transduced cells which is very positive. Especially since they had a high number of CD34+ cells to work with in the first place.

Now, we are waiting for the effects of the Bulsulfan to display themselves. The purpose of the light chemotherapy is to "make spcae" in the bone marrow. What that really means is to give the new cells that have been reinfused into Parker some time to begin to work while the bone marrow cells affected by the chemo are in a state of confusion you might say. As a result, there is a overlap in time in which the old cells and new cells are not working yet. During that time no white blood cells are made and sent out into the blood stream. As a result, Parker becomes neutropenic. In the next couple of weeks we hope to see this occur. It lets us know that the Busulfan (chemo) did its job and that the new cells have an unfair advantage over the old cells. They tested the amount of Busulfan in his blood stream while they administered it and according to their experience the results would indicate that netropenia should occur in the time that I specified.

So, we wait.

I made another movie of Parker for you to see. I hope to have it uploaded today, so check for it.

Read All About It!

2007-05-18T14:34:00.000-04:00

Just a quick note to let everyone know that the Toronto Star will be doing another story on Parker in tomorrow's paper. We would just like to thank them very much for being so supportive of Parker's story and helping us to educate people about Parker's disease. Make sure to get your copy tomorrow!

Today

2007-05-18T03:33:00.000-04:00

It was a very long wait for everyone over the past year and a bit. We prayed that we would eventually go to Italy to take part in a gene therapy trial so that Parker could one day live a healthy and normal life. When we got the call a few months ago that we would could begin to plan for a trip to Italy for mid-March we were ecstatic.

Then when March came and it was time to leave we knew that we were on our way to something very big. Now, after two months of being in Italy, Parker is finally going to receive the cells that we know are going to give him a chance at what every little boy deserves. A life. He will be able to see his cousins, aunts and uncles. He will get to grow up having friends; he will go to school. One day he will be able to go to University, graduate and get a job where he can work with other people.

Right now, we watch out for Parker. We make sure that he is never around germs and that he is always healthy. We monitor where he plays and who comes near him. We have done this for some time now, and at sixteen months, Parker does not know the difference.

Now that today is here, and Parker is finally having his cells reinfused we can know in our hearts that everything that we have had to do for Parker to keep him healthy, he will not have to do for himself. The cells will find their place in his bone marrow. They will eventually grow with an advantage over his old cells and produce other cells that contain a working ADA gene. They will go out into his blood stream, produce adenosine deaminase and as a result the cells of his immune system will be free of the toxins that previously kept them from guarding his body. Yes, this will take some time, but it will happen. Parker will live a normal life eventually and we can watch him do it.

The reinfusion of cells happens today between 2p and 3p here in Italy. For those of you who want to wish Parker good luck or just want to let him know that you are proud of him, you may do so. From now until Parker's cells are reinfused I will open up the comments for people who would like to leave a word of encouragement. Don't be alarmed if you do not see your comment appear right away, I have comment moderation turned on.

UPDATE: Parker's cells have been reinfused. The number of cells that we were already very pleased with had increased significantly. Smart Cells they are!

Thank you very much for those of you that were able to add a comment this morning. I know that my wife will be very pleased to see them as will Parker one day. For those of you who were not able to post a comment, I know that your prayers and thoughts are with Parker.

Where do we go from here? We wait for the cells to take over his body. At least another four months in Italy, but we can do it doing that Parker now has cells to help him.

Gene Therapy Update

2007-05-16T04:45:00.000-04:00

I got five hours of sleep at the hospital last night so I have some energy this morning to write the first article since Parker has been at the hospital. The procedure spans five days and although we entered the hospital on Saturday morning, Parker began the actual procedure on Monday morning. I will do my best to inform every one in this article everything that has happened over the past few days.

Saturday and Sunday were more for us to get accustomed to the room then for than anything else. On Sunday, Parker did have a line placed into his central catheter to prepare him for the next day's bone marrow harvest. Parker has a very happy little boy on the weekend as he got to run around in his new crib without any cables attached to him yet. We were also allowed to remove Parker from the actual isolation room and carry him around the surrounding room. For those of you who do not recall how the room is constructed, there is an isolation area within a large hospital room.

On the weekend, my wife and I were both allowed to stay with Parker for the whole day and one of us stayed with him over night. My wife stayed with Parker the first night and I stayed with him the second. Now, that the procedure has started, we are allowed to have one person stay with him from the morning change over until 3pm. At 3pm, visiting hours begin and hence the other parent may enter the room. Visiting hours ends at 7pm, but from that time until Parker goes to sleep we are allowed to help each other through dinner and bath. By 8pm it is time for bottle and my wife puts him down to sleep. At this time, the one who is not staying the night goes home to sleep and the other stays with Parker at the hospital. In the morning, the other parent returns to the hospital and from eight until half past nine we help each other through breakfast and preparation for the upcoming day. After this, one parent goes home and the process repeats itself.

Monday morning, with the help of a nurse we prepared Parker for his harvest by making sure he had a very good bath. He was "disinfected" so that we could decrease the chances of any contamination of the bone marrow during the harvest. When we finished, we put Parker on the gurney and walked with the doctors to where Parker would undergo the harvest and have his stitches removed. The whole trip there Parker smiled and remained very cooperative. What a brave little boy, my son is.

Several hours later, Parker returned to the room and for the first time since we left the Hospital for Sick Children in Toronto we put on sterile outfits to be with our little man. From Monday at 1pm when he returned from the harvest until about a month and a half from now, Parker will remain in the isolation area and we will continue to gown.

Parker returned quite groggy and remained that way until about 6pm that evening. It was actually very similar to the last time Parker was put under and had a harvest performed. By that evening, Parker was much more energetic and was not complaining of any pain. Our doctor did come to see us to let us know how many cells (CD34+) they were able to retrieve. Although I would love to tell everyone I feel obligated to keep that between us and the Italian team conducting the trial. What I will say is that it was in the range that they wanted and it was a very good number of cells. Parker continues to do his job so that he can one day live a normal life. The number of cells that will finally be transduced and eventually reinfused into Parker on Friday may differ slightly from the number they have so far but it is expected if it does that it will not change very much.

During the administration of Busulfan (mild chemo), blood will be checked five times over six hours twice. The first set of checks began just prior to the start of the first dose of Busulfan (Monday at midnight) and the second set began midnight on Tuesday (last night). The blood that was taken from Parker on Monday night had to be done through a peripheral vein. Unfortunately, they we not successful at inserting an IV to take the blood from Parker, so as a result, he was woken up every 30-45 minutes for another needle. I felt so terrible for Parker, he was so tired and every time he fell asleep it was very short lived. What was worse was that they had alot of difficulty getting a vein so each time they tried to obtain blood it would take at least three pokes in his leg, foot or arm. I was on the brink of crying myself. I would try and hold him still while they poked him over and over. He cried and screamed because he was tired and in pain. But every time they finished, he would hold me really tight. Then when the morning came and my wife came to relieve me, Parker sat with her and when I smiled at him, he laughed at me. My son laughed at me. Over and over again. The night before I had held him down while what I would consider he must have thought was torture. I don't know why, but when it was all said and done Parker had forgiven me. I love my little boy so much and I am so proud of him. You are the strongest person that I know in the whole world and I will always think so.

Parker has currently completed six of the eight doses of Busulfan. The blood tests revealed that he has the correct amount of Bulsulfan in his blood stream. That and the fact that Parker has shown no side-effects to his chemotherapy is just one more thing that Parker has done well. Parker's next infusion begins in about an hour and his last one is at 18:00 hours Italy time.

I had said that I had gotten some sleep last night. The reason for that is not because I came home to sleep, but because the nurses working with Parker did an incredible job. We were able to use his central line to take blood and when they did do that they kept the lights off and used a small flash light so that he would not wake up. Parker slept from 12:30 until 7am.

My wife is currently at the hospital with Parker. I will go and see my family at 3pm so that she can have a bit of a break. My wife is doing the double shift today so I can come home to sleep.

I will try and write again in a few days. Parker, daddy and mommy along with EVERYONE else are very proud of you!

Just Images... Again

2007-05-11T07:18:00.000-04:00

I am placing a bunch of images in this article as I want to use them before we go into isolation tomorrow. There is an article following this one that is also new as of today.

Always Smiling!

Green Beans, balsamic and olive oil.

Pretty cute, eh?

You need to stay hydrated.

Gaga loves walks with the monkey.

Don't worry dad. I will put it back.

Silly Gaga, straws are for kids!

Would you believe me if I said he was staring at the TV?

Yummy Pasta.

Everyone has a baby picture of themselves eating pasta.

Big Week - Next Week

2007-05-11T06:52:00.000-04:00

It seems to me that once every other day is all that I am writing lately. I am not sure if that is going to change any in the next while. I am sure that everyone is going to want to know what is happening over the next week since Parker will have completed the actual procedure by Friday evening of next week.

Tomorrow, at 10:30 am, we take Parker to the San Rafaelle to be admitted into the isolation room of the bone marrow transplant unit. We have waited over a year for this and the time is finally here. We are of course feeling quite a few different emotions as tomorrow approaches. We met with the head nurse yesterday morning to go over with us how isolation works. There are some major differences between how isolation works here in Italy and how it works in Toronto. Regardless, we know that although it is different here it does not mean that it is any less effective. Whether we are in Toronto or in Italy, in the end it all depends on how diligent we are while with Parker. Keeping the room clean and germ free should keep him healthy.

For those of you who are curious how the upcoming week will play out, I shall explain. On Saturday and Sunday, my wife and I will spend with Parker in the room as we get used to our surroundings. Of course, we will play with Parker and keep him happy and stimulated but we will also use the time to make sure that it is as clean and sterile as possible. The hospital will of course clean our room each day but as I said we feel it is our responsibility to make sure that Parker is in an extremely sterile environment. Saturday, my wife will stay overnight and on Sunday, Monday, and Tuesday I will stay with the little monkey. On Sunday, Parker will receive an IV to prepare him for his bone marrow aspiration on Monday morning. Starting on Monday at midnight, Parker will begin his chemotherapy using Busulfan. This will be administered for two days and blood will be taken on the Monday and Tuesday evening while the chemotherapy is being administered to check for the levels of the drug in the blood stream. This will be done in a regular vein and not through the central line. It is just much easier for me to do these nights at the hospital and let my wife spend the days with Parker. On Friday, Parker will be given his bone marrow cells (modified by the vector) back to him through an IV. This should take about 20 minutes. When that is finally done, it is just a waiting game. We just hope Parker continues to wear the Big "S" on his chest.

I guess all I can say is to check back here every once in a while to see if there is an updated article. I promise to keep people informed on how Parker is doing whenever I have time.

Soon

2007-05-09T03:18:00.000-04:00

This post spans two writing periods. The first is in the hospital on Monday and the second is on Wednesday morning.

I am sitting here in the hospital with Parker and my wife as we wait for Parker's IVIG to finish being administered. We have been here for about five and half hours now and probably have about another 30 minutes before we are done. The immunoglobulins are administered at a much slower rate than we have been accustomed to at Sick Kid's but I am sure that has something to do with the protocol of the hospital.

This week is definitely a big one for our family as we have our meeting with the head doctors on Thursday and then we are admitted to the isolation room on Saturday at 10:30am (Milan time). I know that it is going to be difficult going back into isolation especially since only one of us will be allowed in the room with Parker except during visiting hours which span three hours in the afternoon. While in isolation at Sick Kid's, I am sure that some of the nurses would say that we were difficult and anal retentive at times. My wife and I have already discussed the fact that we will try our best to not come across that way during our stay at the San Rafaelle. It will be very difficult being confined in such a small room with Parker and not being able to have each other to help but we will be patient and will make sure to support one another through the process. Nana and Gaga are here to help out wherever and whenever they can. They have been great the past few weeks watching Parker for us so that we have some extra time before going into isolation. However, I have a feeling that while Parker is in isolation, it will be my wife and I who will have to stay with Parker in the actual filtered room within the room we will be staying. With Parker being so active and the room being so small I have a hard time seeing it any other way. Regardless, it means so much to my wife and I that they have put everything on hold at home so that they could be with us during this extremely difficult time. We want them to know that everything they have done and continue to do for us is appreciated more than they could ever know and just having them here for emotional support has been a tremendous help. Parker is very lucky to have his Nana and Gaga and we know that he loves them very much.

It has been a few days since I cut Parker's hair. He was very good during the haircut. He watched his Backyardigans while I tried the best I could not to wreck his hair too much. I think we are used to his hair now but once I had done it my wife was a little disappointed at my haircutting skills. We all think he looks a little bit older now with his haircut.

We all went to the Duomo yesterday. All five of us. Gaga remembered his camera so he took quite a few images while we were down there. Mommy, Daddy and Parker are used to the number of stairs at the metro but it was a little difficult for Nana but she tackled them with flying colours. We had a wonderful day together and finished it off with some gelato before leaving.

Mommy is currently feeding the little monkey his breakfast right now. Lately I have been giving him cream of wheat with strawberry jam and strawberry yogurt which he really likes and therefore eats fairly well. From what I hear coming from the kitchen his regular cereal junior cereal mush is not going as smoothly. His lunch and dinner are Parker's responsibility. You saw the video. We give him the food and he finds a way to feed himself. We were told that that may cause a problem in isolation since they measure his ins and outs. That means they need some way to measure how much food he consumed. We will have to figure that one out.

Parker is coming off Septra/Bactrim and starting Pentamidine again. Septra is apparently more toxic to the bone marrow and for that reason it will be discontinued for the duration of the procedure. Pentamadine is administered through an IV every few weeks instead orally three times a week like Septra. It will be nice not having to worry about having to give Parker Septra in isolation. Diflucan and Cyclovarin will be enough for us to do by ourselves.

We have our meeting tomorrow afternoon and will no more information about the procedure then. On Saturday morning, we will meet with the head nurse of the BMT unit where Parker will be staying and they will train my wife and I on the isolation procedure.

I hope that everyone has a great week.

Ciao for now.

Hungry Man

2007-05-06T08:31:00.000-04:00

I have been neglecting the site the past few days and I apologise for that. We have spent most of the week in doors as the weather has not been so nice as of late. For six weeks we had nothing but sun and warm weather but recently all we have had is rain. So, you can imagine how happy we were to see the sun this morning.

Parker has been doing extremely well. He is much more confident in his walking, as he spends most of his time lately in the upright position moving from one toy to another. I am not exactly sure how it is going to work with Parker when he enters isolation in the next week. Now that he walks everywhere I am sure he is going to try and get out of his isolation area since it is not enclosed.

Tomorrow, we will be going to the hospital for some more tests and to remove his stitches from the central line he had placed in him a few weeks ago. We change the bandages regularly so we know that the cut is healing very nicely.

On Thursday we meet with the main doctors to go over the upcoming procedure. We have many questions about the time we will spend in isolation and look forward to beginning the actual gene therapy.

We have decided to give Parker a little hair cut later today to prepare him for isolation and his chemotherapy. We do not predict that we will lose a lot of his hair but right now it is quite long and we want to get it out of his eyes and ears. I know I will not do the job that Anna did but I will do my best. Check in tomorrow to see how it went.

We have recently let Parker feed himself lunch and dinner each day. It makes life a lot less stressful for us. He is very quiet while he feeds himself. When we try and feed him he wants to have nothing to do with it. Mister Little Independent he is. So, we figured that as long as the food he eats tastes good, he will eat the food we place in front of him. To be honest, it seems to be working. I have included a video of Parker eating dinner a couple of nights ago. It consisted of white kidney beans, fish sticks and mini pizzas. I had some difficulty uploading it, so as a result it ends a few seconds early. When I have time I will re-upload the video. The music is from the Backyardigans and the Wiggles. Two of his favourite groups.

It is weird to think that we have been in Milan for almost two months now. We have spent some time with the family from San Fransisco since they arrived a week ago. They are an extremely nice family and are here for the exact same reason we are; they want their little boy to love a normal life. Although we are not staying at the same residence we stay in touch regularly and enjoy sharing our experiences with each other.

The fluffs have once again returned. The air was free of them but once the sun came out and the rain let up they returned.

Well, Parker is sleeping now and should be up in the next hour for his walk around the Milano Due. Maybe we will let him try one of the rice balls I made earlier today. I am sure that he will have a field day with one of those.

Just wanted to let everyone know that we miss everyone back home and we think of you often. We know in our hearts that we will be home soon.

A Presto!

Happy Birthday Daddy!

2007-05-03T02:44:00.000-04:00

Just a very quick message to wish daddy a very Happy Birthday. Parker has been asking me all morning if I have let everyone know that it is his daddy's special day today. He also asked me to let his daddy know how much he loves him and how thankful he is to have such a wonderful daddy. Nana and Gaga treated us all to a very nice dinner last night here at the hotel. Parker was amazing as he watched his Backyardigans on his DVD player. We were given a nice, quiet table and had a wonderful time. Today mommy is taking daddy out for the afternoon and evening to celebrate some more.
We love you so much Daddy and are happy that we can all be together to share this day with you!