Down Syndrome and Leukemia: Claire's Story of Hope

Standing on Hope - Claires Story with Down Syndrome and Leukemia | helloHOPE

It’s raining as I type this, and as I listen to the heavy drops falling outside my window, I’m reminded of the parable in Matthew 7 that Jesus tells about the wise man who builds his house on the rock. The storm came, and the wind blew and beat upon the house, and yet it did not fall. The foolish man built his house on the sand, and when the storm came, the wind blew and beat against the house, and it collapsed. And great was its collapse. John and Caroline’s journey of parenting their daughter with Down Syndrome and leukemia has been marked by a solid foundation. I love so much their strong faith in God’s plan for their daughter and their family and the wisdom that they carry with them. Here is their story: 

Part One: Exchanging Worry for Peace

The Carrolls' journey started when Caroline was about 18 weeks pregnant with their second child. When a routine blood test came back abnormal, she was called in for a series of follow-up appointments that would reveal that her baby girl, Claire, had an AV canal heart defect. As a labor and delivery nurse, Caroline’s mind immediately raced to the worst case scenario stories that she sees in her job.

The doctors and nurses assured her that, though Claire would need surgery, her heart defect was not major and could be fixed with one surgery. That said, no parent wants to hear that their baby will be undergoing open heart surgery in the first weeks of her life.

The discovery of the heart defect led to regular visits with a perinatologist, and as they learned more about the heart defect, it was hinted that Claire was at high risk for having Trisomy 21, or Down Syndrome. The cardiologist said, “Do I think she has Down Syndrome? Yes. Is it certain? No.” Caroline left each doctor appointment in tears, her emotions trying to take in delivering a baby with a heart defect and Down Syndrome.

How was Caroline dealing with these life-altering developments? Peace came to her in a conversation she was having with the Lord one day. She described it this way: “There was a point in that pregnancy where I was worrying about it, worrying about it, worrying about it. I just felt God saying, ‘If she does have Down Syndrome, it’s not an accident and don’t worry about it.’ And so I kind of just felt this load lift off of me. Either He’s telling me not to worry because she doesn’t have it, or He’s telling me not to worry about it because He’s in control and this is the plan for us.”

That confident faith in God’s plan for Claire has truly stayed with John and Caroline. Claire was born with Down Syndrome and had her heart surgery at just a few months old. While she should never need another heart surgery, Down Syndrome does come with other medical challenges. Claire goes to speech, occupational, and physical therapy each week, along with extra doctor visits to monitor her muscle tone, joints, thyroid, and overall health.

Part Two: Finding Hope During the Journey with Acute Myeloid Leukemia 7

While Claire’s days are full of doctor appointments, they also are characterized by time playing with her big sister, meeting up for playgroups at GiGi’s Playhouse, and sharing her contagious smile. Sweet Claire also became a big sister this fall right as she turned 2.

Claires Story with Down Syndrome and Leukemia - Joy | helloHOPE

At her 2 year check-up, Claire had a CBC (Complete Blood Count) test done. That night, Caroline received a phone call from the doctor asking if Claire had a fever and if she was ok. Caroline explained that Claire had been acting perfectly fine, but the doctor said that all of her counts were low and that she was profoundly anemic. Claire had been running around earlier in the day and showed no signs of illness, so she had another round of bloodwork done to confirm the results of the first tests. This time, as Caroline got home from the blood test with Claire, her doctor called her and said to turn around and go straight to the ER. The next day they received the diagnosis that Claire has acute myeloid leukemia 7.

I cannot even imagine what hearing those words would feel like, but John and Caroline held onto their faith in God’s perfect plan for Claire. They felt the storm of emotions that come with hard news, but they continue to stand on their foundation of faith. Caroline reflected on how they view their situation: “We have that hope that God is in control and that somehow this is going to work to our good and His glory. I don’t know how you’d do it if we didn’t have that. My biggest prayer with her having Down Syndrome and now leukemia is, ‘God I hope that You use this to show You and to reach somebody. That we would be able to show people that we have hope and point them to the reason we have hope.’”

The doctor explained that kids with Down Syndrome who also have acute myeloid leukemia 7 have an 80-90% cure rate. When they’re 2, they tolerate chemo really well and don’t remember it. But. It’s 6 months of treatment, and most of that time Claire will be in the hospital.

Claire is 3 treatments into her 6 month chemo plan, so we asked how their family manages the struggle of spending so much time in the hospital and separated. John explained that in the early days at the hospital he noticed that when a parent was on the unit with their child, it was usually just the mom or just the dad, but rarely both. He knew that living that kind of lifestyle for 6 months was going to have an impact on their marriage. Caroline remembers, “He told me as much as possible, we need to be together with Claire or together with Eloise & Isaac. And I think that’s made a huge difference. It’s hard having a kid not here and I think just being together and leaning on each other helps us get through this.”

God’s care and provision for the Carrolls are seen in more layers of their story than we have room to share, but one of the biggest ways they have seen God’s hand in caring for them is the tremendous support they have received from their community. Their family, neighbors, co-workers, church family, and beyond have stepped right in to help in countless ways. A friend from Caroline’s running group set up a meal calendar that was full in 4 hours. Another friend gifted them a monthly house cleaning so that their time at home could be focused on their other children and getting the rest they need. And one of the most beautiful ways they have been supported is by a woman from Caroline’s home church who immediately offered to coordinate all of the visitors that come stay with Claire at the hospital. John and Caroline are dividing their time between the hospital and home with their other children, but of course, there was the concern that Claire would be by herself at times. Because of their community, though, Claire rarely has a lapse between people coming to stay with her.

Part Three: A Diagnosis Isn’t Everything

Their amazing support network has been instrumental, but it’s also easy to see the Lord’s hand in Claire’s heart.  She has taken a page from her parents’ faith and is battling leukemia with her characteristic joy and hope. I love what John said: “One of the things about Claire? I don’t think I’ve ever known someone so loved by so many. I want to say, thousands, I really do.”

Caroline agreed, “People meet her, and they’re like, ‘Oh, I just love her!’ We love her, and we think she’s really cool, but it’s really amazing to see how she has that effect on others.”

John continued, “We love her just like any other kid; the Down Syndrome is just part of it. You don’t really think about it all that much; sometimes when you talk about it, it sounds weird. When we think about it from the eternal perspective, Down Syndrome is a physical malady, but I don’t believe it gets applied to her soul. [...] But I also look at it [Down Syndrome] sometimes as a gift because she’s so happy and unencumbered by the opinions and thoughts that generally drive us to sadness. You see that come through in some of the adults with Down Syndrome that we’ve had the pleasure to meet.”

Caroline also expressed how they’ve found hope through their journey with Down Syndrome, and now leukemia. Her perspective is profoundly rooted in the goodness of God and the comfort in knowing that He’s in control: “I hear people say, ‘I wouldn’t change them for the world,’ and if I could change Claire having Down Syndrome, I would. I don’t want her to have that difficulty and obstacle. She’s going to struggle with it forever, and if I could take away that struggle I really would love to. But that’s Claire, and she’s the Claire that God gave us, and I just rest in my knowing that it’s not an accident — that she has Down Syndrome and God has a purpose for her — or else she wouldn’t be here. Our job as parents is to help her fulfill that purpose, whatever it may be. That’s what my hope rests in for the long term stuff that’s not going to go away. That goes for any diagnosis. If your kid has diabetes or EoE, God knows and He’s in control. He could take this away if he wants to, but He obviously has a purpose in this, and we have to try to seek what that is and honor Him in dealing with it.”

Claires Story with Down Syndrome and Leukemia - Family | helloHOPE

Claire continues to shed the light of her joy and happiness on all she meets. We are so grateful to have the opportunity to share the Carroll’s story, especially the rock-solid foundation in hope and truth that they have in Jesus.

If you’d like to follow her story, you can do so here.Whether you're facing medical adversity or you want to support someone who is, you may be interested in downloading a copy of helloHOPE's free prayer guide.