It's the first of May. Amazingly what comes to mind is that this is the month of Mary - probably because I read it in the church bulletin last night. Should be an interesting month. We have two birthday's this month - Jonathan's own on the 11th and my own on the 29th. It's funny - but this is the first year that I got included into the monthly birthday celebration at work. The previous (two) years - there was always something going on - so I never got the 'honor' : ). This is also the month that we go on our Make a Wish trip - a much needed vacation that we are all looking forward too. Lastly, this is the month that I 'officially' turn pro with my photography : ). So it is definitely shaping up to be an interesting month. I'm hoping to truly cherish each day and enjoy it to the fullest.
Jonathan has been going well. On the 20th of April - Jonathan got sick (again). He developed a fever (suddenly) on Thursday - with chills - and was admitted to the hospital. He got another bacterial infection - but this time it was different - it was Ecoli (spelling?). This was an interesting development - and although I wasn't any more concern that his other bacterial infections - Gabby was more worried - primarily because of the particular bacteria. What was making me/ us more nervous was that we had finalize arrangements to leave San Jose on May 3rd to head over to Orlando - and with this latest bacterial infection it was definitely going to affect our plans. We were not sure whether we would have to postpone for a couple of days or cancel the trip entirely. We had these 'hard' requirements of wanting to go in May because we wanted to avoid going to Disney World during the summer, partly because of school closing thereby having lots of people, and partly because it would be hotter and during the hurricane months. As much as people (outside of California) make fun of our earthquakes, I think I'll take my earthquakes any day over the hurricanes in Florida : ).
By Saturday (April 22nd), Jonathan's blood cultures (from Friday) were clear - so we knew the antibiotics were working and it was just a matter of finishing his treatment - which actually ends today (10 days later). Last week, some more blood cultures were done and everything is still clear - so all looks good for our leaving on May 6th - our new date to start our vacation. What's interesting is that his antibiotics finish today, he gets blood cultures done on Wednesday, and then on Friday we get the okay to leave on our trip which is on Saturday. I know, I for one, will be very disappointed if I geared up the week to leave and I find out the day before that the trip is off. Yes, I know, I wouldn't have a choice, because Jonathan's health is the primary focus - but you know - human nature - when you are looking forward to something and then it gets pulled right under you.
Jonathan also had his immuno-studies done. This was a 'first' look to see how his immune system is recovering. During his stem cell transplant - one of the goals was to wipe out his immune system - so about six months after transplant they test to measure how much his immune system is recovering. So - it more than six months - eight months to be exact - and his results were promising. All his indicators are showing activity but his immune system is still not there yet. What it does mean is that we can start relaxing some of the restrictions we had including, not wearing the mask as much, meeting more people, going into some enclosed environments, etc., but he is still immuno-compromised so we still have to be careful.
Wait - almost forgot - some significant happened two weeks ago. Jonathan does NOT have his NG / NJ tube anymore! When he got sick two weeks ago - he vomited out his tube and he was insistent that we don't put another one back in. Since then he has been taking his oral medications without too much fuss, and his appetite has been slowly improving. We still have a lot of work to do with getting his appetite back on track - but one of the reasons I didn't want to press putting in another NG tube was that I wanted to get him more into the habit of eating on his own and not having to depend on his 'liquid' diet. As we were telling the nutritionist last week, we have to 'strongly encourage' Jonathan to eat all during the day. The only time he doesn't need any encouragement is in the night - and late into the night - when his appetite picks up. The hard thing is that Jonathan needs at least 1400 to 1500 calories a day - more than the average person. This is to ensure that his body is getting enough nutrients so that it can heal - but if we don't keep it up - then Jonathan starts to lose weight.
I can definitely say that although we have our good days and our bad days - it seems to be slowly getting better. I know it's more difficult for Gabby to get him to eat than when I'm at home with the kids, but with our vacation right around the corner, the timing works out well so that I'll be able to spend the next 2.5 weeks working on his eating.
The only other medically (significant) event was that we (Gabby and I) got chewed up last week by our primary oncologist and primary nurse practitioner : (. We even got a 'visit' by our social worker : ). The entire issue stemmed around a prophylactic antibiotic medication that Jonathan is supposed to get on the weekends. By prophylactic it means a medication that is taken to prevent disease from occur and not that there is a disease that requires treatment. Well, we haven't been giving him his medication, Septra, for months and the medical team was a bit concern (to say the least) that we had stopped giving it to Jonathan. I think a lot of reason was due to our forgetting, primarily because it was not a 'regular' medication that he gets everyday, and partly because by it being prophylactic there is less concern / priority about giving it to him. Needless to say - we've started back giving it to him now - so all should be well.
