Thursday, May 31, 2007

Neutrophils Dropping -- Yeah!

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.

Tuesday, May 29, 2007

Not Much to Update

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.

Friday, May 25, 2007

AC Milan are European Champions

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.

Wednesday, May 23, 2007

Picture Summary

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.

Tuesday, May 22, 2007

Pop Goes the Monkey's Line

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.

Friday, May 18, 2007

Read All About It!

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!


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.

Wednesday, May 16, 2007

Gene Therapy Update

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!

Friday, May 11, 2007

Just Images... Again

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

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.

Wednesday, May 09, 2007


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.

Sunday, May 06, 2007

Hungry Man

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!

Thursday, May 03, 2007

Happy Birthday Daddy!

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!

Tuesday, May 01, 2007

No More ADAGEN! Finito!

I guess I have quite a bit I can write about this morning as it has been a while since my last entry. The biggest and most important thing that has happened just recently is that Parker had his last ADAGEN injection yesterday. We waited at the hospital for over two hours but it is something we are accustomed to doing. Normally we go a little later, anticipating a long wait before seeing a nurse but yesterday we didn't. So, as long as everything goes well with the gene therapy (we know it will) Parker will not have to get the injection of ADA injected into his leg twice a week. For those of you who are unsure what the injection is for, it is the enzyme that Parker is unable to produce himself. Unfortunately its immunological effects are not long-term. Parker's t-cells would have eventually come down after a couple years of using it.

Yesterday, our friends from California flew into Italy with their son for gene therapy treatment. They are well; however, they did have quite the difficult day and although they are living at a different residence then us, we did get to meet them last night. I am sure she will share her experience on her blog eventually as I do not want to write too much without their experience. I will say that it is extremely nice to have an English speaking family that is going through the same obstacles that we are here in Italy. They are extremely nice and we look forward to spending much more time with them. That brings the total SCID-ADA families currently here at the hospital to five (that we have met). Two have already been treated and three including Parker are awaiting treatment. Our new friends will soon be going through the same tests that Parker went through during our first six weeks here.

Today is another holiday here. It is Labour Day in Europe, so apparently, everything is closed. We were also under the impression that everything was closed on Sunday's as well. That said, Gaga and I took a trip to the City Center on Sunday to do a little sight seeing together. When we got there, we quickly realised that the shops near the Duomo are open for tourists. We did not go to Duomo for shopping so we began walking in search of the castle and church that the Bishop Saint Ambrose's crypt lay. Bruna had taken Tracy and I there a week a go so I did my best to find both with only having been there once.

Roy was quite impressed but I had found the castle in no time. The Saint Ambrose was a little more difficult to find but we weaved through the small streets of Milan in the direction I remember the church being and to my surprise we found it. There was a mass going on so we did stay for that for a little while. Then we paid a euro to purchase a candle that we could light and say a prayer for Parker. By now, we were quite hungry so it was off to McDonald's for a couple McMenus (combos). It was nice spending the day with Roy without the ladies. Yes, we are very lucky to have such nice spouses but it is nice to have a guys day out once in awhile. Besides, Nana had treated mama to a pedicure the day before!

Lastly, we have decided to be much more liberal in our method for giving Parker his dinner. Now, we just throw a towel below him, give him his food on his plate and let him go at it. Most goes on the floor in the end but some does eventually make it to his mouth. No more forcing food on the little monkey at dinner time.

For last year's article, click here.

Ciao for now!