Noah’s cancer journey began in January 2023, when he was just two and a half years old. We were just getting used to being a family of four, as Noah had become a big brother in November.
Two weeks before his diagnosis, he was having symptoms of an ear infection which led to me taking him in to see the pediatrician. His doctor confirmed my suspicions and believed he had the start of an infection and prescribed him an antibiotic. While on the antibiotic, he seemed to perk up a bit, but shortly after, he started feeling and looking worse than he had before. He was extremely restless at bedtime; he was weak and had very little energy, which was very unlike him. He was having reoccurring fevers and night sweats, and he had become extremely pale and had random bruising all over.
On Friday January 27, 2023, while Noah was napping on the couch, we noticed how labored his breathing was and became increasingly concerned. I called the doctor to have him seen as soon as possible. Not knowing anything about Leukemia at the time, my husband and I believed he may be anemic according to all the symptoms Noah was experiencing. While sitting across from the doctor, I could see the concern on her face as she told me she would like us to go right to the ER for a full work up to see what the cause of Noah’s symptoms were.
We headed home and made arrangements for other family members to watch our two-month-old daughter while my husband and I headed to Hershey with Noah. As we waited, he only became more uncomfortable and ill-looking, his skin almost a yellow tone. After getting an IV placed and bloodwork drawn, we waited for some news. While we anxiously waited for the doctor to return, I was constantly checking the portal on my phone for updates. As the blood counts started to appear, I knew the results did not align with someone who had anemia. A while later, I noticed a group of doctors huddled outside the sliding glass door of our room. I could tell by the expressions on their faces that they did not have good news, this was something more serious.
They explained to us that Noah’s bone marrow was not producing blood cells like it should be and that they needed to figure out why. This could be caused by one of two things, either a virus or leukemia. Hearing the word Leukemia shocked us both, my husband immediately got emotional, and I was speechless. It felt like an out of body experience. I was numb.
Noah was going to be admitted and would need blood transfusions right away with a bone marrow test in the coming days to determine if it was indeed Leukemia. We didn't have time to dwell on the news that was just thrown at us. We needed to be strong for Noah as he did not understand anything that was happening to him.
Over the course of the weekend, he had gotten several blood and platelet transfusions. By Monday, he was stable enough to have his bone marrow biopsy done. While we sat in the waiting room, the doctor performing the procedure came out to talk with us. She said it was very difficult to retrieve any marrow while doing the biopsy, which then confirmed to us that it was going to come back as Leukemia. Our hearts sank even lower that day and we feared the absolute worst for our boy.
The very next day, the results came back and officially confirmed Noah's diagnosis, B-Cell Acute Lymphoblastic Leukemia (ALL). As much as we didn't want to hear that news, it was almost a relief to know what it was and to know there was now a plan in place to make him better.
His treatment started almost immediately. His port was placed the following day and his first chemo treatment right after. He was in the hospital for a total of 12 days. The day before Noah was discharged, we met his social worker and learned about Four Diamonds for the first time. We had heard of THON before, but never really grasped what it was all about. We knew there would be some big medical bills coming our way, but our main focus was on Noah getting better and we would figure the rest out later.
After learning about all the things Four Diamonds would do to help our family during Noah's cancer journey, it felt like a huge weight had been lifted from our shoulders. It would be one less stressor in our now very stressful lives.
After returning home, it was very overwhelming. There were steroids that I had to give Noah, which caused him to become so overweight and so weak that he could no longer get on and off the couch or his bed, couldn't climb stairs and just left him with little to no energy. He was just two and a half years old, and this was heart breaking to witness. He should have been outside running around and playing but instead he was on the couch for hours on end.
We were at the hospital weekly for bloodwork, treatments, and spinal taps. We gave him many different medications at home and even had to inject Noah with chemo ourselves. This was our new normal and there was nothing normal about it at all.
Over the next several months we moved from one phase of treatment to the next. Sometimes it felt like we were just going through the motions and doing what we needed to do to get to the next thing and closer to the end goal.
We have since had two more hospital stays for fevers, viruses and low blood counts. There is no doubt that we have had an amazing outpour of support from family and friends, but it still felt like no one could truly understand the things we were going through or the impact the trauma of it all was having on our marriage and our family.
By the grace of God, we have grown and overcome so much together both as a family and as advocates for the childhood cancer community. We have had the opportunity to speak and tell our story through many Four Diamonds events. Even though public speaking is way out of my comfort zone, I will continue to step up and speak out when given the opportunity. I hope that our story will reach others walking the same path, help spread awareness for childhood cancers and shine a light on Four Diamonds and the impact they have on families like ours.
Noah is now four years old and is in the maintenance phase of his treatment. Life now feels a little more normal (well our normal anyways). The end of his treatment should be coming up around April 2025. He still goes to the clinic at Hershey’s Children’s Hospital every four weeks for blood work, has spinal taps every twelve weeks accompanied by a week of steroids and takes daily oral chemo at home, nausea meds and weekend antibiotics.
Aside from all that he is a thriving four-year-old boy who loves Lightning McQueen, cars, jumping on his trampoline with his little sister, Noelle, and loving up on his kitty cats any chance he gets. He is so full of life and his smile can light up any room. From the outside looking in, you would never know the fight he has had to fight and all the things he has and continues to overcome. He is a real-life superhero.