Third weekend in a row without much rest! It may sound like I'm complaining - and maybe I am a bit - but I miss my weekends! At least I cannot blame it at the office : ). This is also the first time we've had to experience (although remotely) the death of a patient late last week and another one on the way. For some reasons the reactions are different for Gabby and I. The first death had Gabby feeling 'depressed' and emotional - because although she knows that these thing do happen - she didn't want a 'in your face' kind of reminder. I think she was also emotional because it happened during the time we had our BMT consult for Jonathan's stem cell transplant and we got a lot of details about what to expect, side effects, and short and long term risks. For me my reaction is one of being more numb - is the best way I can put it. There is a whole lot of feelings I would like to explore here but I'm afraid to explore it or talk to much about it.
Other than that - we are finally starting to see signs that Jonathan is perking up a bit. He has now started to eat a little bit - popsicles, liquids and small amounts of food. I'm afraid to see how much he ways but I'm glad that he is finally starting to put something into that little body of his. Hopefully by today (for the earliest) or tomorrow we would get a better indicator as to whether his counts are starting to climb. Yesterday his WBC went from 0.1 to 0.2 and his hemoglobin went from ~8.2 to ~8.5. I'm optimistic but as had happen last week - his WBC went to 0.2 one day and then went back down to < 0.1. With today being day 16 - it's totally plausible that his counts should finally be on their way up and that the healing would begin.
On another note - I think my 'indirect' bonding with Arielle is starting to work. I'm trying to spend more time with her and she also sleeps in the bedroom with me. On most occasions I try to be at home when she wakes up so she can see one of her parents instead of waking up to an empty room. She seems to be mellowing out quite nicely and since Jonathan has not been a super grumpy mood and hence has not been pushing her away - it makes everything much easier to handle. Again - I'm not looking forward to the stem cell transplant because that will be two months that Jonathan and one parent will be away from home. I have not even begun to wrap my head around how we are going to make all that work!
My initial thinking is that for at least 3 weeks we don't have to worry because my folks would still be here with us. The problem is what will we do for the next 6 weeks? What makes this issue more challenging is that we have to limit the amount of contact between Jonathan and Arielle - because little kids tend to be Petri dishes of germs and this is one occasion we cannot take a chance of Jonathan 'catching' any cold or sickness. I'm so worried about Jonathan catching a cold that I wonder how will we know if we are harboring anything? One of the things the BMT team wants us to do is to come up with a third person who can stay with the kids in case Gabby or I get sick - because if either one of us get sick we will be 'refused' entry to be with Jonathan. We have one or two candidates in mind - but it will be a big strain for either one. I guess we just have to make sure we don't get sick - and the only consolation is that we'll still be in the 'summer' months so not as many germs will be 'flying' around as compared to the flu season in November / December.
The other big thing we need to plan for is Jonathan's schooling. He will definitely be missing the 2005 / 2006 academic year - which also happens to be the year he would have gone into Kindergarten. One thought is home schooling and the state has a provision / service where this can be provided. Another thought is for us to hire someone directly (who we know) to provide the home schooling - since I'm not sure who or the quality the state will provide. This is definitely the lesser of the two problems to worry about - but is a problem I'll have to start my homework on very soon.
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