Day +40. We have been in the hospital at Duke for forty-six days now. That plus our time at Wake Forest, and our inpatient days so far this year have totaled a little over seventy days. That time has brought Zoe to a new level of health but has worn her parents down with week-long colds and an injured arm. Our poor dog has even been sick! Everyone is healing of course and trying to focus on what has gone right, because most importantly, Zoe is getting better.
The unit itself has been a sad place the past several days as two patients died at the end of last week. They each had had a long, hard fight with their illnesses. Early on one of the nurses described 5200 as the place that families come for their last chance. That is the sober reality of a bone marrow transplant unit.
Our families had been fairly healthy prior to Zoe getting sick. We had never encountered any major health problems and probably took our own and our childrens’ health for granted. Having Zoe come close to death, and talking with numerous other families who have lost children, really puts in perspective how every day is a gift to be lived to its fullest, as all we really have is today.
In an effort to put our journey into perspective I took Zoe out and around the hospital yesterday evening while she was unhooked from her lines and given a pass to go off of the unit. We walked down to the main entryway of the hospital and Zoe watched with great interest all of the passersby, the fountain and the brightly lit, open, ceilings.
We stopped for a few minutes and tossed some change into the fountain while we made some wishes for the future. Then, we moved on to the courtyard where Zoe spent time outside, something we all take for granted, but something that she has not been able to do much of at all so far in life. She seemed to appreciate the breeze on her face and the chirping birds scampering about.
From the courtyard we wandered to the Children’s Outpatient Clinic wing where we stopped to check on Lucky the Fish. I think he recognized Zoe as he swished his tail and scuttled away to hide behind some seaweed, and when we went to find him he came out from behind the bushes, hovered in front of us and then scuttled off again as if to engage us in his game of hide and seek. We played a few rounds with him, how could we resist? We just love Lucky and his fish freckles. Seeing him reminded me of Campath Week and all the uncertainties we faced at the onset of Zoe’s conditioning. Now here we are almost at discharge with a new immune system intact.
Zoe’s nurse today commented that Zoe seemed to be back to her spunky self. Spunky. A nice description of our daughter. Today she herself has been playing hide and seek with her blanket, wiggling her head back and forth, smiling, and sticking her tongue out. She’s feeling pretty good it seems. She is having some issues with high blood pressure and taking meds for it. Her WBC is holding steady at 3.4 without growth factor and her ANC is 2312. The addition of Prilosec seems to be helping her spit-ups, and she is taking more of her meds orally, something that has to happen before we can be discharged.
So, she is on track and doing well. We are scheduled to leave the hospital on Thursday. It seems almost hard to believe but we are ready for the big day. Very ready!