As parents of a child with cancer, we often get asked for ways to help. There are a multitude of ways beyond just financial. The one we want to focus on today is stem cell donations. There is a lot of mystery and misinformation surrounding this topic. Hopefully, we can clear some of that up and possibly help find a match for someone in need.

First, let’s discuss what a stem cell is. In basic terms, it is an immature cell or rather a cell that can form into a specialized cell. If you hear the suffix blast, that is what these are. The entire human body is made from these cells. The addition of proteins and/or activation of sequences along the genetic code turn these cells into mature specialized cells. Most people associate the term stem cell with embryoblast and the later cells. However, that is not what we are discussing here. We are talking about blood and bone marrow stem cells. These cells turn into various types of blood cells and bone marrow. Bone marrow cells are what make the immature blood cells. These donations treat leukemia, lymphoma, neuroblastoma, and multiple myeloma.

Becoming a potential donor is quite easy. There are two places online that you can use to register, DKMS and Be the Match. Both websites will walk you through how to sign up and see if you qualify as a donor as there are some restrictions. Potential donors are sent a cheek swab kit. The results from the swab will be used to match with a patient. It’s probably a common thought that donation is only done with the collection of bone marrow from your hip, but that is only the case in about 20% of matches. The rest are done through simple blood collections. Regardless of the method, everything is covered by the collecting organization.

The reason we are talking about this is that our June spotlight, Zeke Ramsey, is one of the many children who need help finding a match. Currently, Zeke is undergoing chemotherapy which should conclude in October. If he does well, early next year his team will begin the process for him to receive a bone marrow transplant. His mother, Hollie, tells us Zeke’s story.

Zeke's story really started the second day after he was born. That day my husband noticed he had rapid breathing and wasn’t sleeping more than 15 mins at a time. We asked the nurse to check on him, and that’s when they brought the doctor in who felt Zeke needed to go to the NICU at Duke Regional to just see what was going on. We didn’t think it was serious, and they told us to rest while they had him. A few hours later we received a call from the doctor in the NICU who stated we needed to come down. Once we got down there they told us Zeke had to have a platelet transfusion and that his numbers where all over the place. At that point they decided to life flight him to big Duke NICU. We where confused, and things where moving so fast we where terrified. The worst feeling in the world is just having your first child then him being taken from you because he is sick, you don’t understand why, and having to leave the hospital without them!

Once we got to Duke they had him hooked up to a ton of machines which was even more terrifying. Thank God for the staff. They where kind and helped us stay calm while trying to figure out what was happening with him. Fast forward, we ended up staying at the hospital for two weeks, and they ran every test you can think of. Zeke was than diagnosed right at six weeks old with NRAS-initiated juvenile myelomonocytic leukemia. That was the hardest day hearing those words, “your son has cancer.“ It felt like our world flipped upside down that day literally!

The next day Zeke had a port placed and started azacitidine which was five days every three weeks. He did that for about a year with no change and than started a trial with trametinib. He did that for over two years, and it started to have bad side effects on his eyes also with no change in the cancer so we had to change. He started mercaptopurine over a month ago to keep his numbers down until we start the process for a bone marrow transplant.

Treatment has been hard and unpredictable! He has had a ton of side effects from all this, and that has been grueling to watch our baby go through. This changed our life forever! Cancer has been horrible. We have lost friends and gained people we never thought would be a support system. Our life is not normal, and we constantly have to be safe with what we do for the sake of our son. Financially, we have taken the biggest hit! Since his diagnosis we lost 40% of our income due to him having to be home. That has taken a toll on us and is stressful! Also, when you get the diagnosis, you just think about it being cured. We didn’t realize how much the treatments would affect him and what your child has to physically and mentally go through. He is three and has anxiety going to the doctors. He has behavioral issues from how much he has had to be held down and forced to have a procedure. So on top of chemo, he has occupational therapy, behavioral therapy, and play therapy just from treatment at such a young age. It is horrible and hurts our hearts! It is so hard to relate to friends and family with children his age because life is so different and difficult at times.

Some positives are that Zeke stays positive and is our strength. He continues to show us how to be strong and fight. We have also met some truly amazing people along this journey and families that have understood where we are and how to be in the moment. What has been hard is that people don’t know how to talk with you when you say “cancer.” Sometimes all we need is someone to listen and be with us in that moment. That helps the most instead of just getting nervous and shutting down.

So we are still just waiting and praying for more research to be done to help see cures for our children. Thanks for taking the time to hear our boy’s story!

Love,

The Ramsey’s

Zeke recently was able to start Pre-K which has had a huge impact on his life. The Ramsey’s have a GoFundMe account which they also use for updates. We hope that by sharing Zeke’s story he can not only find a donor match but that more children will as well.