Sunday, December 28, 2008

Once In A Lifetime!

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.....

Tuesday, December 23, 2008

Merry Christmas

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.


Thursday, October 30, 2008

It's Been A While....

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.


Tuesday, August 12, 2008

The 2008 SCID Picnic!

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.

Tuesday, August 05, 2008

Where has the time gone?

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.

Tuesday, June 03, 2008

We are Blessed...

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.

Wednesday, May 21, 2008

Happy 1 year Anniversary Parker!

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 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!