Juggling work, Jonathan's care and family responsibilities is definitely not easy. A couple of weeks ago I was thinking of going on paid family leave - by taking about two days off a week - so only work three days a week - but changed my mind for a couple of reasons. The two driving reasons were - a reduced scheduled means reduced income, and secondly it will affect my career path. Now, it's a couple of weeks later and I'm getting back into the same problems I had a couple of weeks ago and I'm starting to revisiting whether I should really go on paid family leave.
What is driving me to make this decision is that I definitely need to spend some time with Jonathan - on average I spend about a couple of hours a week vs. my previous norm of spending the equivalent of at least three to four days. Another reason is that I (really) need to give Gabby a break and spend time with the family as a whole unit - gone are the days where we will all be in the hospital. My real wish is to not have to work for the next couple of months, or at least have the ability to work from home - but both are not options available to me. The more I think about it, the more I need to take paid family leave, so I think my plan is to just do it. I'll definitely investigate whether I can drop my schedule to three days a week.
Switching topics now - Jonathan is chugging along. Since his second boast of stem cells - his counts have risen daily - very slowly for the first ten or so day and then a bit faster thereafter. Monday (10th October) marked the first time his WBC went above 11 and his ANC was above 2000. This means that he is not getting G-CSF everyday now - but instead of stopping it completely he is getting it every other day because he is fighting an infection. On Monday, his labs came back with a positive culture for a fungal infection. This is bad because in terms of the various types of infections he can get - viral, bacterial, or fungal - the fungal infection is the one you want to try and avoid. With his positive culture - it also means his 'pick' line had to be removed - so now Jonathan has a peripheral line (inserted just above his hand) to get his IV fluids, medications and other liquids. The hard thing is that the peripheral line is temporary and uses a small vein vs. the larger veins that the 'pick' line and hickman (his catheter) had access to - but he cannot go in for his surgery to have a new hickman inserted until his fungal infection has been treated.
On the positive front - Jonathan is walking again. He has full use of his legs and even did a dance for me when I put on some party music in his room : ) last week. He also started to swallow on his own on Monday night. He started off by taking a couple sips of chocolate milk and also swallowing his own spit! So no more getting the container for him to keep spitting into : ). Last night he surprised me by asking for some of the (hospital) soup I was eating. He drank most of the liquid - initially from a spoon and then via a straw - and he also ate a couple pieces of macaroni.
Yesterday also marked the first time in a long time that Jonathan and Arielle played like in the 'old' days. I heard they had a lot of fun in his room and I know that Arielle enjoyed it immensely. It was good to have her big brother back in form : ).
We are slowly coming up to day 60 - targeted around the 24th of October. If Jonathan stays in the hospital until day 60 then it means when he is released that he gets to go home directly instead of going to the Ronald McDonald's House. This is great news because we are ALL tired of being in an institution - I'm sure Gabby more than me - since I'm not the one spending all this time with Jonathan. The interesting thing is that about two weeks ago I was having a discussion with one of the BMT Attendings and we were talking about - is it really necessary for us to spend time at the Ronald McDonald house if Jonathan gets released before the 60 days?
As a side bar note - the Ronald McDonald house is a housing facility that is next to the hospital - so although it has the McDonald name - it is not a fun / entertainment center - just a housing facility. The general rule that was being followed is that BMT patients must live less than 20 minutes away (including rush hour traffic) or else they will have to stay in the Ronald McDonald house. In our case we live about 30 minutes, with a little bit more if there is rush hour traffic - so we would have had to stay.
Although I agreed with the doctor that we needed to stay - I now fully understand why. One of the frightening things is that when Jonathan gets an infection - because he is immuno-comprised - he doesn't show any symptoms. This makes sense because his immune system isn't in a position to fight off anything - so his body doesn't reaction by showing you the external signs. This is scary because one could never tell if he is truly sick or not and I know understand why during the first 60 days it is so crucial.
So - the beat marches one. Jonathan has a CT scan schedule for this afternoon. This scan is to get an idea as to how serious his fungal infection is, but the results can also be used to verify that he has no more tumor growth. Of course he needs more than one test to indicate whether there is tumor growth - but one test out of four is better than none.
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