I have a new rhythm now - with regards to going to work. I drive up to Millbrae and then take Bart into the city. Today I left from the hospital because by the time I was going to leave last night - it was already 10:45 pm so I know I'll hardly get any sleep. So Jonathan had both parents staying in the room with him last night.
Jonathan was really cranky yesterday - it took a long time for him to warm up to me. I guess he was feeling yucky but he wanted his mommy to do everything : (. We had to force him to take his oral medication last night - two sets, force him to take his shot (G-CSF) and hold him down to clean his wee-wee - which has a minor infection. After that we took him for a walk around the hospital. He loves to stand on his pole (that holds his various IV bags and dispenser machines) and have us push him while he stands on the pole. What was so nice was that on the way back - walk from the adult hospital to the children's hospital he wanted to go faster so Gabby ran down the corridor with him holding on to the pole. I was teasing Gabby that she should run back : ) but I think she was too winded to make that trip a second time : ).
By the time we went back to the room - I decided to do some tape recording and after the first session (of about 3 minutes) and I played it back - Jonathan perked up and wanted to do some more. He likes to tape his voice and then hear the playback which has him squealing in laughter and delight. Apparently it's a game he enjoys although from my standpoint I'm doing it for memories : ). I think that exercise helped him to relax a lot and I eventually feel asleep next to him on his bed.
This morning Jonathan platelets were at 15 while his WBC (white blood count) was at 0.4. With his platelets being so low he started another platelet transfusion this morning. So far Jonathan has had three blood transfusion and two platelet transfusion. I've also never seen his WBC climb so slowly. It's been increasing by 0.1 every day - which is the slowest increase ever. They have also been increasing his dosage of antibiotics everyday - for the last couple of days - so it's definitely an interesting time for us. It makes me worry more and more about his stem cell transplant - but there isn't much we can do right now.
Today is the first day that I made an attempt to donate blood! Unfortunately the blood bank at Stanford does not open until 12 pm - by which time I'll already be in the office so I'll have to do it another day / time. I've kept saying that I need to start giving blood - not necessarily for Jonathan - but just to give blood because of all the blood that Jonathan has received - I feel I need to do my part for society as well. At one time we had explore doing a direct blood donation - in which Jonathan will get blood from one of us - assuming that we are O negative as well - but it costs $90 for each session and with the amount of blood that Jonathan has been consuming - that is way to much money.
So if all goes well - I should be giving blood tomorrow - since the blood bank opens earlier - around 7:30 am. It's funny though, I want to donate blood but it must be donated to Stanford - not anywhere else, e.g. the American Red Cross, etc... I don't know if it really matters but at least for the short term I'll try my best to give at Stanford.
So ... when are we going home? Doesn't look like it's anytime soon. If is counts continue to climb so slowly then it will probably take close to a week before it reaches above 5.5 - at least at the current rate it is going. It means that the hospital will definitely become Gabby's home : (. Over the next couple of days - this week until the end of next week - Jonathan will start his various tests to re-evaluate the tumor and cancer. Hopefully the results will come back negative and that he is free of disease. He'll be getting a CT scan, bone scan, MIBG scan and bone marrow aspirate. A lot of tests and I hope all worthwhile but I'm reserving judgment until the week after next.
I know Gabby isn't too happy. With the death of two patients over the course of a couple days - and a friend of ours - we met in the beginning of Jonathan's treatment cycle - whose son has a remission - does not make Gabby (nor I for that matter) to comfortable with the prospects. I guess some people may say I'm being pessimistic but I think it is more of my being more realistic and maybe - in some small way - preparing my myself in case the inevitable happens.
Speaking with an uncle yesterday on the phone - I've come to realize that my next couple of journals will all be sad and heavy with emotions. It's unfortunate but I can see how with someone going through a long term illness - if the inevitable happens it's a little bit easier to deal with death.
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