Last night I spent a lot of time talking to Maya about today, trying to prepare her. We knew that it would be necessary for her to wear a mask during her time here, and I wasn’t sure how that would go. So before bedtime, I took out the masks and gave her one, then put one on myself. I helped her get hers on, and she really didn’t fuss about it at all. She seemed to understand something was going on, and she was very attentive.
I explained to her that tomorrow we were going to go to visit baby Zoe for her new birthday, and she would be getting a new immune system. I told her that when people get colds or other things that make them sick, their immune system helps them get better, but that Zoe’s immune system couldn’t help her get better and so she needed a new one. Maya took all of that in very intently, and then asked if she could keep the mask to sleep with. We finished up our stories and said goodnight.
It always takes a little time to get her down to sleep, especially since we’re away from home. I went back in to check on her a little later, and she had all of her stuffed animals lined up on the bed, and she was making all of their boo boos better, one by one.
Earlier in the evening I had shown her how to kiss her finger, then touch the place where an animal had a boo boo, and told her it would feel better now, but I hadn’t given it much thought at the time. Coming into her room and finding her ministering to all of her toys was really touching. She had her mask on and was kissing her finger, then touching each one.
We all headed in to the hospital mid-morning, transplant was expected to be around 11:30-12. When we arrived, Zoe was all dressed up in her special dress ready for transplant day. The previous evening had gone reasonably well, she’s been improving slowly since our really bad days yesterday and Monday. A little bit of spitting up, but she was willing to nurse, and that seemed to make her feel much better.
Zoe’s transplant started at 12:30, and ran until around 1:15. Her procedure is called a Hematopoietic Stem Cell Transplant, or HSCT. She received a unit of stem cells obtained from donated umbilical cord blood from the bank here at Duke University Hospital. The HLA typing for her unit was a 5/6 match, 6/6 being a perfect match, 4/6 or 5/6 being typical for transplants. She also received pre-meds of Tylenol and Benadryl to help manage any fever or allergic reactions.
They say that transplants are really uneventful most of the time, and thankfully that was our experience as well. It took about 45 minutes, and we all sat around talking, taking turns holding Zoe’s hand, and playing fun songs. Zoe’s blood pressure went up as expected, but she didn’t get any fevers or allergic reactions, which can happen.
The transplant itself is more of a transfusion in terms of what people usually think of as a transplant. Most of us think of a kidney or other organ and an operating room when we think transplant, but Zoe received hers in her hospital bed where we’ve been this past week.
Her mood was pretty good, all things considered. Not a lot of smiles, but she remained awake the whole time despite the Benadryl, and wasn’t fussy or upset. We understand from the team here that kids often have a bit of a transplant honeymoon for a few days where they feel ok, then they may have some pains or fevers, and it can go up and down a bit until she has recovered.
From here on we’ll be watching cell counts every day. We expect she will remain at “<0.1” for awhile, but we want to see white cells grow. You’ll probably hear “Grow cells grow!” a lot from us.
As you probably noticed, we’ve been counting down the days from -23 to today, Day 0. Tomorrow is Day 1, and we’ll count up from here. Our goal is to see her cells graft and grow, counts to begin going back up, and then around Day 30 we’ll do a test to see what percentage of her cells are hers and what percent are donor cells. Assuming everything is going well, we’ll be looking toward Day 100 at that point, when we can return home.
It’s a long process. First Zoe’s life had to be saved from the active HLH, which thankfully happened quickly. Now she has had her conditioning and transplant. Next, her new immune system has to grow and we have to keep her healthy. After approximately a year, one year from today, she should be healthy enough to resume a normal life. Thankfully she is young and won’t miss the malls or crowded restaurants or school that she can’t go to but would miss if she were older.
For our family, it’s another step along the way toward being whole again.
I’m so glad Zoe got her transplant today! I’ll be praying still for Zoe and your family. I hope everything goes well & she can be a healthy baby and leave that disease behind. I wished Ean could of had the chance to still be here and couldve gotten his transplant we wouldve been home today if everything wouldve gone good, but things turned another way but I read your story every day and I get a smile because your baby is such a fighter & I hope and pray everything goes well. She looks adorable with her dress and I know she’s going to be a healthy baby soon with no hlh anymore. May god bless you all 😉
Maya will be a fantastic doctor when she grows up 🙂
Here’s hoping the next 100 days go by quickly!
GROW CELLS GROW!!!
Have been thinking about you all today! I love the story of Maya helping all her stuffed animals. It is so amazing to see how Zoe is such the trooper.
Michelle and Evan what amazing parents you are. I know this is a trying time but you seem to be so positive.
Hopefully the next days will pass quickly and those cells will grow, grow, grow!!
Praying for you all!! Love to everyone!!
Please give Zoe and Maya a hug!!
Michelle and Evan,
Congratulations on reaching such an amazing landmark. I’m so amazed at your stamina and focus.
It really puts other challenges into perspective.
Happy new birthday Zoe! You are absolutely gorgeous and so precious and what an amazing mommy and daddy you have! You are on your way to recovery and I’m sending lots of hugs and prayers all the way from Colorado!
Michelle Schulze (baby angel Liam’s mommy)
-increasing awareness of HLH and Histiocytosis-
Praying all goes well for Zoe and her sweet family.
We loved how Maya is caring for her “Friends” We are hoping for those cells to grow quickly and that recovery will come at a better than anticipated rate.It appears that she came through this procedure with little discomfort and in pretty good spirits considering. We wait daily for your updates and read them as soon as they arrive. We are praying for you all daily. Love to all. Nannie and John
So glad Zoe’s day was uneventful. Our Maya’s was as well. She looks great. Remember one day at a time. She will do great. I just know it.
Much love & prayers to you all.
Love & hugs,
Shana, Kris & Maya
GROW CELLS GROW!!!!
Your HLH Buddy Maddie
When I was reading this last night I got teary reading the part about Maya so when I played the video at the bottom of the post I blew snot bubbles when I heard that song!!! You guys have maintained an amazing sense of grace and even humor through this — you are such an inspiration.
p.s. I really felt like you needed that visual. . .
Grow cells grow! You all are amazing. Best wishes. Margaret and Gene