Thursday, August 30, 2007

Be Nice, Parker!

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

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

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

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

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

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

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

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

Tuesday, August 28, 2007

Very Good News

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

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

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

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

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

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

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

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

Saturday, August 25, 2007

A bunch of Images

I know I put my pants around here somewhere.

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

Lasagna made in the toaster oven. Hungry?

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

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

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

My version of Insalata Caprese.

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

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

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

My wife talking to Nana on the phone.

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

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

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

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

Thursday, August 23, 2007

Not Neutropenic

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

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

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

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

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

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

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

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

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

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

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

Saturday, August 18, 2007

Staying Positive

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

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

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

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

Thursday, August 16, 2007

Just Us in our New Place

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

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

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

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

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

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

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

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

Monday, August 13, 2007

A Break in Como

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, August 06, 2007

Not Much Happening Lately

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

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

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

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

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