Friday, June 29, 2007

Update and Images

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

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

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

I know that I am cute. Really cute.

Mom and me checking out my newest video.

Mom, fish cracker please.

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

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

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

Thursday, June 28, 2007

Trip to the San Raffaele

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

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

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

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

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

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

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

Tuesday, June 26, 2007

No More Isolation

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

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

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

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

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

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

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

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

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

Friday, June 22, 2007

Stress (By Mom)

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

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

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

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

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


Monday, June 18, 2007

Better Day

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

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

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

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

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

Saturday, June 16, 2007

Difficult Days

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

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

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

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

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

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

Wednesday, June 13, 2007

Bone Marrow Aspirate Today

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

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

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

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

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

Sunday, June 10, 2007

More Images...

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

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

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

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

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

Remember that nice sorted pile of puzzle pieces? Remember?

Friday, June 08, 2007

A Day with the Monkey

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

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

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

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

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

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

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

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


Wednesday, June 06, 2007

Full of Energy... as always

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

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

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

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

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

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

Monday, June 04, 2007

Keeping it Clean

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

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

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

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

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

Saturday, June 02, 2007

Put Your Mask on First

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

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

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

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

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

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