Inspirational Stories

In February 2019, our daughter, Claire, was diagnosed with a rare form of acute myeloid leukemia (AML) just three short months after we celebrated her second birthday. We noticed a few discolored bumps on her body and assumed it was just a reaction to a new soap I had purchased, but then they began to pop up on other parts of her body. We went to her pediatrician and were referred to a dermatologist immediately for a biopsy. 
 
After several excruciating days awaiting the results of the biopsy, I was called by the dermatologist to let me know the biopsy was showing cancer cells and that they had scheduled an appointment for me with the local pediatric oncologist. Never in my life would have imagined that those bumps would have led us to pediatric cancer.

I will never forget having to call my husband at work and uttering the words “the biopsy is showing cancer”. I could barely speak. After several tests, it was confirmed that Claire was not only diagnosed with AML, but a rare and aggressive subtype, that would require a bone marrow transplant to give her the best chance of long-term survival. 
 
We signed documents no parents should have to sign describing the risks associated with chemotherapy and the possible long-term effects the treatment can have. There, on the piece of paper I had to sign, was written how the side effects of chemotherapy and the additional medications can lead to death. How was this possible? How was this happening to our child? A week ago, our sweet little girl was fine and leukemia wasn’t even in our vocabulary. I had been working on scheduling swim lessons and dance lessons for her. Now here we were signing documents stating the medication that could save her also has the potential to kill her. Our world, as we knew it, flipped upside down in an instant. 
 
The fear was even heavier knowing what could happen due to the toxicity of the medications that are meant to save her life. Within a week or so, she had a double lumen central intravenous line implanted in her chest and the intense regimen of chemotherapy began. Her precious baby skin was inflamed with the medications, she had huge red itchy welts. I watched as her gums swelled, almost hiding her teeth, from the mucositis she developed and became so painful that she couldn’t eat or drink anything. This led to her requiring a painful and uncomfortable NG tube for medications and nutrition. Many times, the tube would fall out due to a variety of reasons and she would have to be taken away to a separate room to put the tube back in. It was scary and distressing for her to have this done. She was so young. She didn’t understand. 
 
She had to have weekly dressing changes that were painful and traumatic for her due to the sensitivity of her skin from the chemotherapy. I can still hear her screams and cries from these dressing changes. They are ingrained in my brain forever.
 
Claire went through three grueling rounds of chemotherapy before transplant that included month-long stays at the hospital. She had constant fevers, sicknesses, skin issues, traumatic diagnostic tests, constant blood and platelet transfusions and more sedations than I can count.  
 
Her third round of chemotherapy caused a reaction in Claire’s brain that was thought to be leukemia after it was picked up on an MRI. By the grace of God, Claire achieved remission after her first round of chemotherapy and just before this happened, we were already planning our trip to Houston for transplant. When her oncologist came in to break the news, we were crushed. It was as if we just found out she had cancer for the first time all over again. Just when we thought things couldn’t get any worse, she had to have 6+ hour brain surgery to determine what exactly it was. Thankfully, it was just what they called a “reaction” likely from the high-dose chemotherapy and the brain biopsy tested negative for leukemia. While this was absolutely amazing news, she still had to endure brain surgery to get to this conclusion, which in itself has a number of potential side effects. 
 
Our local hospitals don’t do pediatric bone marrow transplants, so we had to pick up and move three hours away from our home and support system in Austin for transplant for roughly three months. Once we were there, she had additional rounds of super high dose chemotherapy before and after her transplant.  
 
She again endured multiple side effects from the medications and the transplant. One of which included Venocculsive Disease, also known as VOD, which is extremely dangerous. Thankfully, she was able to overcome VOD and her transplant grafted. There are many children who are not as fortunate as Claire was in this situation. We were able to return home after over 100 days in Houston, but still had and have to return frequently. Post-transplant she’s also endured skin graft vs. host disease and had to be on steroids for three months.
 
Our family cannot be more blessed that she is two years post-transplant this past July and doing well! She truly has come such a long way. However, Claire missed out on so much daily life during her treatment and post-treatment. I remember looking on social media and seeing family and friends living their life with their children. I saw them traveling, starting school, going swimming, playing with friends and doing everything else kids should be doing. It was so hard seeing these snapshots of their lives while our family wasn’t able to have those same carefree days. Our days were much darker. We had to face things no parents should have to face with their child. The families I knew in those pictures didn’t have a child who was facing life and death.
 
Claire is doing great, still in remission, and living life as normally as she can in this world. We will need to be vigilant and watch her for years to come to keep an eye out for long-term effects from the harsh treatments she went through. She will undergo yearly testing on all her organs among other things. 
 
Many chemotherapies given to Claire were developed prior to man landing on the moon and were meant for adults. Our children need better, gentler, more targeted, and safer treatments for their developing bodies so that cancer is just a small part of their story. They need to not only survive after cancer, but they deserve to thrive.