After a short break for Michelle and I over the weekend that included a movie for myself (Shutter Island) and a birthday party and play date for Michelle and Maya, we’re back on schedule at the hospital. It was a really needed break and I’m grateful my mother is here and willing to sit in with Zoe while we try to see what normal life is like for a few hours.
There was a new doctor on over the weekend, somewhat younger and who mentioned she had only ever seen two cases of FHLH in her career. In both cases, they found it much much harder to treat the child than they have in Zoe’s case, lending us new hope that this may not be the Familial form of the disease. The reason they are making that judgement is her age, very young to present the acquired version, but as previously mentioned she was very very ill prior to presenting, which is one way that the acquired form manifests itself. We may have our hopes dashed soon enough when the genetic tests start to come in from Cincinnati Children’s Hospital, but in the mean time it’s what we are holding on to as a way to escape this disease without further harm to Zoe.
An update on Zoe’s numbers:
- Her weight has again dropped a bit (not a bad thing) to 13.5lb
- WBC: 3.2 Sat, 4.3 Mon
- Hemoglobin: 8.8 Sat, 8.9 Mon
- Platelets: 191 over the weekend and then 217 today
- Ferritin: relatively unchanged at 880
In general these are positive or neutral signs, though the WBC count is just under normal. Ferritin is a slow moving indicator, which is why they don’t check more often for it’s level. Platelets are steadily rising, a very good sign, and WBC and other counts are holding around normal range.
Right now we are on track to leave the hospital as of Friday assuming no symptoms reappear. We’ll be in regularly for medications and Zoe is set to begin getting a spinal tap every week for the next four weeks starting this thursday. She has to have general anesthesia each time along with the other inherent risks of surgery, so that’s a little unsettling. Every taste of good news seems to come with a bitter side dish around here.
Great news that Zoe should be able to get home with you by the end of the week. She has proven to be quite resilient in her response to treatment thus far and that is a very good sign. Mara
Wonderful news about being able to come home Fri. It seems things have stabilized somewhat so that’s also good news. We all know it’s heartbreaking to have to watch someone so dear suffer. Our thoughts and prayers are with you.
Michelle and Evan,
It appears that there is good news and I know you will be happy if Zoe is able to go home on Friday. You are fortunate that you have your mom and Larry to help at least you can have somewhat of a break and Maya can be with people that she trusts and loves.
Michelle as a mother I know it is hard especially with knowing how to divide your time between the girls and still have some time left for Evan. Each day gets a little easier and you just have to take each day at a time. Enjoy the time that you do have no matter how little that time is with each other. Children adapt better than you think they do I found this out with David and Emily.
Our prayers and thoughts are with you and look forward to hearing that Zoe is home and you all will be in one household!!