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
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