Closing In

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!

8 thoughts on “Closing In

  1. Evan, Michelle, Maya & Our Big Girl Zoe,

    Having been where you are today and looking back on what a journey our little gils have had makes me appreciate every moment of everyday. Zoe has inspired so many. She is a strong little bundle and you should be so extrememly proud. You both have been such amazing parents and deserve to be praised for your strength. I know, Michelle as her mommy this has taken a real toll. Maya is now 3 months post transplant and I am still in survival mode. Evan I can’t begin to understand what it has been like for you as her daddy, but you are one great dad. God has blessed us with such amazingly strong children. We are so happy that Zoe is getting better and better everyday. Soon you will all be home together. Zoe you keep up the great work little one! Even though we have never met, we feel like you have become such an important part of our family.

    With much love and prayers,
    Shana, Kris & Maya Gordon

  2. Dear Evan and Michelle,
    We just read your latest posting and are so happy that things are looking way up. Zoe seems to be such a happy and good baby. When you are able to leave the hospital on Thursday and get settled we hope that you both can get some well deserved rest. Maybe Maya can entertain Zoe while you sleep. Just a quick note: our cards are coming back as undeliverabe. Don’t know if we have the correct address.
    Love and Prayers, Nannie and John

  3. So happy to hear that Zoe is doing so well and will be discharged on Thursday!! What a happy day that will be!

    I have learned through my illness that every second we are given is a gift from God and to live it to the fullest!

    Evan and Michelle you have shown such great courage and strength through this all!!

    Take care and will be anxiously awaiting Zoe’s release! Give Maya and Zoe both hugs and kisses!!



  4. I take it Evan has the injured arm — is he okay?? What a beautiful post Michelle, and I love that you included a photo of what you were describing, especially Lucky the fish! Sending love and sharing your gratitude, michele

  5. That was Michelle’s post and injured arm, it’s a little hard to tell when it’s one or the other of us since the names are so small. She’s ok, it just makes it a little harder to lift kiddos.

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