She has red blood cells!
Zoe’s labs show red blood cells! Her hematocrit is above 30 and the measure of new red blood cells in her system is nice and high. Oh joy! Maybe no more transfusions! The ironic part is that her neutrophil count dropped again (the white blood cells that fight infection). I’ll find out next week if she needs injections again or if her body is just having fun messing with everyone.
We got hit with the plague this week in various forms. On Tuesday both kids woke up with fevers but Noah had cold symptoms as well. Both fevers broke by the next day. The funny part was Noah was comatose on the couch with fatigue and Zoe ran around the whole day saying, “I not sick”. On Wednesday I had the fatigue and nausea and couldn’t imagine being up and running around. I guess the little things don’t bother her the same way. She puked last night on the way home from labs but was up tearing around the house this morning. I just love the irony. Noah’s fever is back today and he has a terrible cough and the beginnings of an ear infection. Zoe, with the suppressed immune system, and low neutrophil count is FINE.
Quote of the week: I’m just putting potato bugs in mom’s shoes!-Noah
Limbo
We’ve been living in limbo the last couple of weeks. Although it was my understanding that a switch to Cyclosporine was imminent things have not turned out that way. I had a very frustrating week which left me confused and angry regarding the care she’s been receiving over the last month+. At the end of last week the call was made to change nothing while we wait and see if things improve. Her labs from Wednesday did show that her bone marrow may be kicking back in but we won’t know until next week for sure. Her hematocrit is back into the 20’s now (normally she’s at 40) and hopefully her continuous drop will be interrupted. If she continues as she has she’ll need another transfusion in three weeks.
Her GI problems are persisting (but the face swelling is hardly there at all) and although there was one good week of absorbing her Tacro, her level bottomed out again this week. She will see the GI doctor again on June 10th and I’m really hoping he has something for us other than “it’s so strange” or “let’s wait and see”.
But Zoe, being Zoe, is of course continuing an exciting life with only a few complaints on the side. 
Noah finished out preschool this week (I can hardly believe it) and his school had a little graduation last night. Although he’s sad he won’t be with those friends or his teacher anymore, he’s also excited for Kindergarten and a summer full of fun. It was sad saying good-bye to his preschool which was a truly magical place. All the parents and board members were compassionate and flexible with our family allowing Noah to remain a student even when I could not fulfill co-op obligations. Thank you Burien Co-op Preschool for giving Noah these wonderful last 2 years!
Unlikely is her middle name
If truth serum could be sneaked into the coffee of Zoe’s doctors I believe most answers to my questions would go something like this, “I have no idea”. Instead I get an answer that seems halfway plausible that gets changed two to three weeks later. I call it the three week delay. No answer, test result or explanation is actually real until it has been at least three weeks because anything under that time frame seems to be subject to change. It’s not ideal but it’s not disastrous as long as I remember this rule and don’t hold too tightly to my answers.
So here’s the current change. Zoe doesn’t have Transient Erythroblastopenia of Childhood. AND Transient Erythroblastopenia of Childhood is not really a diagnosis but more of a description of the phenomenon of unexplained bone marrow suppression. Let me translate that for you, “we don’t know what’s wrong with your kid but if we give it a name you’ll feel better and we’ll all just cross our fingers that it goes away”. Unfortunately, Zoe isn’t getting better and some of her virology reports came back from the bone marrow biopsy showing that she has a herpes virus present ONLY in her bone marrow (as opposed to her blood where most viruses hang out). The herpes virus in her bone marrow is the one that causes Roseola, a childhood illness with obvious symptoms Zoe has never shown. This is a bit unlikely; her having it only in her bone marrow but never having shown symptoms of having the virus at all but “unlikely” has always been a pretty good description of Zoe.
The current theory is that this herpes virus is not playing nicely with her immunosuppressant drug and causing the bone marrow suppression so she will likely be switched off of Tacrolimus hoping the virus will play nicely with a drug called Cyclosporine since herpes virus’ never disappear once they enter the body. If it doesn’t play nice then she will be put on an antiviral drug and we’ll hope for the best.
Realistically, she’s probably looking at another transfusion before all this works out. Switching immunosuppressant drugs is pretty involved so my vision of summer is being revised.
There are many things swirling around in my head. Amazed that we have some idea of what might be going on since the way of testing for the herpes virus in bone marrow is so new. Anxious because we’re looking at crossing off one of two possible drugs she needs to stay alive. There are side effects to every drug and Cyclosporine is now her only option (at least until a new drug comes along). Grateful that she looks so great today. She looked better in the last two days than she’s looked in over a month. No dark circles, no puffiness, rosy cheeks and lips along with bright eyes. So sweet!
In again
I got the call today that Zoe’s transfusion couldn’t wait until tomorrow but unfortunately she couldn’t get into the infusion clinic before their cut off time of 3:15pm (it takes 4 hours for an infusion). So……they arranged for her to get an infusion as an inpatient. I get it now. It doesn’t matter how many good intentions there are or how fast you think/want things to go, as an inpatient it just takes forever even if nobody screws up. We got to the hospital at 3:30 and there wasn’t even a room ready until 4:45. Then you have to get orders in and IV team to come and by then it’s 7:00 before the infusion is started. I have a new motto……NO MORE TRANSFUSIONS AS AN INPATIENT! If the phrase, “we need you to come in right now” is not immediately followed by, “and the ambulance is on the way” then my answer is, “I’ll see you first thing in the morning as an outpatient.
It’s now 11pm and she should be done within the hour and then we are going home. We were given the option to stay all night or go and since Paul is here with us we will pack up and head home then. Sleep well everyone.
The great escape
Paul and I FINALLY got away together last week! We went to Cannon Beach for our 10 year wedding anniversary. We planned the trip a couple months ago and it just so happened to be perfectly positioned. We left last Sunday morning and returned on Wednesday evening. It was awesome! 
We went to the beach every morning for low tide,ate dinner out every evening, 
took a great hike and just relaxed.
I even went a couple days without using Purell (I’m surprised my body didn’t go into shock) until we turned on CNN and realized there was a flu outbreak at which point I may have obsessively watched news briefings until my heart rate went through the roof.
And then, too soon, it was over.
Paul’s sister graciously took both kids and took over Zoe’s care for us. I didn’t exactly tell the transplant team that we were leaving town (and by that I mean I purposefully didn’t tell them). Good thing Alecia only had to call them three times.
Wednesday night the team called me because they were planning her next transfusion for Thursday or Friday but then Hemotology decided to wait a week since she will need at least one more after this. I’d really like her bone marrow to kick back in now. So…..we’ll be doing labs tomorrow night and then sometime this week will be her transfusion.
