Memorial Day Weekend

It's so many days after day 0 that I've stopped counting (smile).  After the scare with Jonathan's blood counts dropping dangerously low the previous week - we've been taking it a bit slowly now.  I think that since Jonathan has the cold, coupled with my pushing back on procedures from the hospital, that things have slowed down a bit.  Although I'm glad things have slowed down, for example, his bone marrow aspirate (taking a sample of his bone and bone marrow), and Jonathan is being to feel better (emotionally and physically), I've reached the stage where I want to speed it back up.  Since Jonathan's blood counts have recovered and he is starting to relax a bit - I've noticed that he is indeed slower now.  He doesn't have as much energy as he used to have and even when you do see a hint of the old Jonathan - he cannot sustain the level he used to have before.  This is depressing to see and realize!

On Friday (5/27) Gabby took Jonathan into his school (Pre-K) to have a short celebration with his friends for his birthday.  I know, I know, his birthday was almost two weeks ago - but since his actual birth day was horrible - because he spent the day throwing up, we decided to have a make-up day for him (smile).  Although I wish I could have been there to see him - I heard that he enjoyed himself and his friends were happy to see him.  There were two events that happened that Gabby told me.  Mrs. M (Jonathan's pre-K teacher) was telling the class that Jonathan was going to be coming later that day and that he was bring a surprise.  The class responded by asking, "Are you sure he's coming?".  So then Mrs. M has to modify her statement and say that "if he is feeling well he will be coming".  It was so 'cute' to hear this because I can almost visualize it in my mind.  The second event was when Jonathan went to play on the slide with his friends.  Apparently his friends wanted to slide (together) with him but eventually I think the entire experience got overwhelming for him.  In the beginning he was 'begging' Gabrielle to stay longer but after the slide experience he came back to Gabby and said, "I'm ready to go home now".  I remember Gabby telling me that Jonathan has indeed slowed down now.

Looking beyond - Jonathan has a bone marrow aspirate scheduled for Tuesday morning.  The results from that, coupled with his CT scan performed last week would gave us an indication as to how much the tumor has shrunk since his last evaluation.  This time, the evaluation is to prepare Jonathan for surgery.  By next week they want to have Jonathan's surgery to remove the remaining amount of the primary tumor.  Although this only needed to do the CT scan, our doctor wanted the bone marrow aspirate done because they were a bit disappointed in the last results which showed that he had cancer cells in his bone marrow.  We are hoping that the results - this time - shows that he is free of cancer cells in his bone marrow - because if not - I don't know what will happen.

I know Gabby is very worried about the surgery and stem cell transplant and I guess using the word worry is wrong.  She is probably a bit scared.  I've been lucky that things are so busy in the office that during the day I don't have time to worry - but every so often - when I look at Jonathan - especially when he is sleeping - I worry to and I'm scared.  Of late - I've been asking - why does someone as little and young as my son have to go through so much suffering?  It's so unfair that a little child has to go though all this suffering!