Wednesday, December 26, 2007

Merry Christmas - Parker's Second Christmas

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.

Monday, December 10, 2007

Parker Update

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.

Thursday, November 01, 2007

Halloween Fun!

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!

Wednesday, October 31, 2007

Better Late Than Never!

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!

Thursday, October 11, 2007

I Know, I know.

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.

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.

Sunday, September 30, 2007

To Be Home**

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

Tuesday, September 25, 2007

Looking Forward to Home

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.

Sunday, September 16, 2007


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.

Friday, September 14, 2007


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.

Thursday, September 13, 2007

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

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!”

Tuesday, September 11, 2007

I Promised Pictures

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.