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.
Tuesday, May 22, 2007
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4 comments:
Hey Parker,
You are quite the pillow fighter. Is the pillow OK? It is so much fun to have a pillow fights, wait until you have sleepovers with you cousins, then you can have pillow fights with all of them.
You gave your Dad a little scare last night pulling out your line.
Keep grown Smart Cells
Love you tons
miss you more
Nonno & Nonna
Parker Pants,
My goodness little one...what a busy night you had last night. I hope that after everything that you were able to get some sleep.
I am happy to hear that you are doing well...tell your new cells to keep working hard!
Tell your Mommy and Daddy that I tried to call them yesterday but the calls were not going through...hopefully we can talk today.
Lots of love Parker Poo!
Auntie Natalie xoxoxox
Dear Parky,
What a busy little boy you've been in the last 24 hours! Thanks goodness everything is well now, and you can continue to keep up with the positive numbers coming back.
Give that pillow what it deserves, tough little man.
We miss you tons and tons big guy.
Love,
Auntie Christini and Uncle Mikey xo
Good Morning Parker!
I think you & Mackenzie are in "cahoots" together, even though you are so far apart. She didnt want to sleep either!! Thinking positively, maybe someday we will have you over for a sleepover and the two of you can be the monkeys jumping on the bed for as long as you both like!!!
Stay strong and tell those cells to keep working hard!! Make sure you get some rest, Handsome!
Love Auntie Kari
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