First induction phase - Day 17 - ready to go home

Today has been the most active I've seen Jonathan in a long while! Yesterday his white blood cell count went up to 6.1 and today his count 'leaped' to 12.x (cannot remember what the decimal number is right now). Given that the range for white blood cells are between 5.5 to about 15.5 - this is very good news for us. Most of his other counts are within normal parameters as well and hopefully over the next couple of days the other counts will be fine, e.g. his platelets, etc...

Today started off with Jonathan eating his porridge (cream of wheat) and a boil egg. During the day I got a couple of smiles from him - all spontaneous - probably due to something he saw on TV. At lunch time when his lunch came he was so curious to see what it was that he burst out into the biggest grin I've seen in a long while when he saw it was a hamburger. From lunch time onwards - he got more and more active. During the afternoon he was watching some cartoons and was laughing very loud, and he kept moving about on his bed a lot - sometimes to the point of scaring me that he'll fall off.

I guess with all the activity he burnt out what little energy he had left and around 7 pm he started to get really cranky and we could see that it was because he was sleepy. So said, so done, he fell asleep between 7:30 pm and 8 pm. I'm hoping he does like last night and sleep though-out the night. He didn't get up until 10:30 am this morning and I got up around 8:30 am - so we both got a fairly decent rest (keeping in mind we didn't go to bed until 12 am that night) - compared to what we have been accustomed to over the last couple of weeks.

Other significant things that happened today was some discussion with the doctors about when they wanted to release him. The original plan (from discussions I had on Monday night and Tuesday morning) was to wean him off of the pain medication and release him on Wednesday. I was cool with the idea because I didn't want us to rush and go home to quickly - only to have something happen and for us to have to come back soon after. So you could imagine my surprise when the nurse comes in around 11 am and says the doctors want to release him this afternoon and they were weaning him off his pain medicine much faster than was discussed.

Well ... I was not to pleased ... especially since a change in decision was made without the doctors have the curtesy in discussing it with me prior to finalizing the decision. So after speaking to the doctor on call and eventually the team of doctors monitoring Jonathan's care - we decided to keep to the original plan and push back releasing him until Wednesday. So you could imagine my 'horror' a couple hours later when Jonathan is most active and making a lot of noise and low and behold the team of doctors come into the room to see the next patient. I look over to one of the doctors as she looks over and I say sheepishly that I kind of regret making my decision to push back on his release.

Looking back I'm glad it's still set for tomorrow - my thinking was to get a good 24 hours of him doing 'well' before he goes home. Tomorrow morning is going to be interesting as we have already begun weaning him off the pain medicine and I want to see how well he eats without complaining about the sores in his mouth and throat. Of course 'how well he eats' is a relative thing since he is not eating much - but if he can chew a couple bites without too much complaint then that is very cool.

My other shock today was when I found out that Jonathan only get a couple days rest before starting the second induction cycle. I was hoping that he would have gotten about two weeks - but no dice. The doctors don't want to give his tumor any chance to get resistive or grow back too large that they lose the effort done so far - and although I understand the reason completely - I was hoping he'll have a chance for more weight gain. The good thing about all of this is that now we have one induction cycle behind us and we have now established a baseline of things to expect.

Looking back, it was the most difficult three weeks I have ever had to endure. More difficult that when I got laid off during the economy downturn in 2001 for the dot com bubble bursting. More difficult than when I proposed to Gabby - okay, okay - I'm joking here - but the thought came to my mind while writing and I thought it was pretty funny.

So the plan this weekend is to try and do a lot of fun things with Jonathan. He cannot go into closed environments, especially where there will be a lot of people, such as supermarkets, churches, museums, etc..., but he can go out into the open air - so we want to try and go to the zoo and the park so he can have some fun. The other thing I have suspected is that his tumor has shrunk a great deal - but I don't have any physical proof as yet - just a feel and some things I have observed. After his second induction cycle they will do a CT scan to see how well the tumor has responded to the treatment. As a parent I'll like to believe that he will be the 'miracle' child that has the tumor gone after the second cycle - but I'm being a parent (smile).