No parent believes in a million years they’d be told the devastating news that their child has cancer. I never thought or imagined my child would be one of the estimated 1 in 285 children to be diagnosed in the year 2019.
My extremely bright, sweet, beautiful daughter Alaia was diagnosed with B-Cell Acute Lymphoblastic Leukemia at age 11 on December 5, 2019. The only tell that something was wrong was a persistent fever and some bruises on her legs that were thought to be from soccer practice.
Upon arriving at the hospital on a direct admit from her pediatrician’s bloodwork findings, Alaia had no idea that they suspected Leukemia. All Alaia knew was that her doctor saw something in her bloodwork that needed attention and she wasn’t worried about it. I remember her telling me, “You know I’m not contagious because they wouldn’t put me near a cancer patient.” Her roommate was a beautiful bald little girl about her age and Alaia knew from her grandfather’s cancer battle that cancer patients were immunocompromised.
Even though I did not let her know yet, I knew that they suspected Leukemia and my heart broke to know that she indeed did not have a virus, but something much worse. She was more concerned with not being out of the hospital in time for her soccer tournament. She and I had no idea she would soon begin the fight to stay alive.
Upon admission, Alaia received a blood transfusion and platelet transfusion. I was told they suspected Leukemia, but after more bloodwork and a bone marrow biopsy we would know for sure. The next day I was told that my healthy thriving child had Leukemia and it was imperative that her chemotherapy treatment start immediately. I had very little time to educate myself on what her treatment would entail. What I did know was that she would be receiving standard care that would be given at any hospital for her newly diagnosed blood cancer and this standard care is all mapped out following a specific roadmap that has very specific timeframes. For her to receive the maximum benefits of her treatment effectiveness, it was vital that she stay on course and follow her protocol timeframe as closely as possible.
One of the first chemotherapies that Alaia received was Pegaspargase (PEG). I was warned by caring nurses that the 2nd dose of PEG might cause a reaction in my daughter. What I wasn’t told is that the alternative chemotherapy drug, Erwinaze, is often on shortage.
When receiving PEG the 2nd time at our hospital’s clinic, we had a team of nurses standing by just in case my daughter had a reaction. Immediately upon receiving PEG my daughter started vomiting uncontrollably and her eye lids and lips began to swell up. They stopped the chemo and medicated her with Benadryl. They continued to monitor her vitals and she actually fell asleep from the Benadryl.
Because of the necessity of PEG in her treatment, they attempted to restart her on a slower drip of PEG. I was hesitant to let them restart the drip, but I was reminded that this chemo was important, so with the oncologist’s directives they tried to administer PEG again. Alaia sat straight up from her sleep and again began vomiting, so they immediately stopped the IV drip and flushed her line. This is when I was told that there was an alternative drug for PEG. The next week, Alaia received Erwinaze injections in replacement for PEG. She had to have 12 shots given over a 2-week period to replace the one dose of PEG.
Alaia’s protocol required PEG to be given during different phases of her treatment. She was able to receive an additional 3 more doses (36 shots) of Erwinaze, but during her Interim Maintenance II phase, we were told that there was a national shortage and she would not be getting the last 2 doses that she needed! How could this be?! How could there not be enough Erwinaze for my daughter and many other children who need this chemo to thrive?! I prayed for my daughter and all the other children who were being affected by this shortage. I was told that it was good that she was no longer in the frontline of treatment and that at least she was in Interim Maintenance II, but this only made me feel sick to my stomach to think of how far we’d come and now we couldn’t finish.
With no help or suggestions from our clinic, I found a recommendation through a Facebook group of parents of children with cancer. They directed me to look into “Angels for Change.” I emailed the organization on a Sunday afternoon and to my amazement, Laura called me that same evening. She didn’t make me any promises, but she assured me that I wasn’t alone. Having a child with cancer can be so lonely because there aren’t very many people who understand, but she told me of her daughter’s fight and how she’d experienced what I was going through. She prayed with me and I felt God’s hand at work, which gave me an unexplainable peace.
Laura got right to work despite having her own child with cancer and a work life. I can’t explain how sacrificial that is, but she was determined to help me and I can’t describe how grateful I am for her serving others during her daughter’s battle. Laura kept me informed of all her findings and in under 7 days, she found and secured the 15 vials needed for my daughter’s doses of Erwinaze. Alaia received the overnighted vials and even the oncologists were surprised. I am forever grateful to God for bringing me Laura and “Angels for Change.” Because of her determination to make a change, my daughter has a better chance to beat this demon called cancer. Thank you Laura and “Angels for Change” for changing our lives.