In March of 2018 our son, Jackson, a senior in high school, was diagnosed with an aggressive form of cancer called T-Cell Lymphoblastic Lymphoma. We were informed that this aggressive disease would require an aggressive mix of several chemotherapy medications.
His body was tolerating the treatment, until he received his third dose of one of the more important chemotherapies in the cocktail, and he had a severe allergic reaction, suffering anaphylactic shock. This reaction was terrifying for Jackson and us. We were told he would not have that drug again, and he would need the alternative drug that was just as effective but dosed more frequently.
Seven days later they administered the alternative drug and his body tolerated it. We were so thankful. Jackson would get the treatment needed to cure his body from this terrible cancer. A couple of weeks later it was time for the alternative chemotherapy again, and we were told that there was a shortage; however, there was enough for his next treatment. As we moved toward his third round of this drug, not knowing if it would be available, we reached out to the FDA and the manufacturing company to try to understand why the drug was in short supply and not available to patients.
We came to understand that there was a real possibility that it would continue to be in short supply and even unavailable for an unforeseen amount of time. We learned that this chemotherapy had been in short supply and out of stock many times over the last years and that children were going without it, having to take a different course of treatment with a lower rate of cure. We had heard through other treatment centers that it could be possible to re-challenge with pre-meds the first medication that caused the allergic reaction. It was time for his next treatment, and the drug in short supply never came available.
Re-challenging a drug that has caused anaphylaxis; that is how important the first drug and its alternative is to the chemotherapy regimen for curing this disease. This was an excruciatingly difficult decision for our son and us. Does he do the re-challenge knowing that he would be putting his life in extreme danger again or take another track of treatment where the rate of cure is lower with higher percentage of relapse? How could this be happening? No child or family should have to make a decision like this. During this painful struggle, we needed support, and we needed help.
When I found Laura Bray and learned that her daughter and their family had faced the same problem, it was comforting to know that we were not alone during such a frightening and unthinkable time. Laura was so helpful in so many ways in our journey to help Jackson be cured from cancer. We continue to have a friendship where we talk about our journeys with a hope for the future when our children are cancer free and no child will have to go without a life-saving treatment. I’m beyond thankful for Laura and Angels for Change’ willingness to share their time, efforts, insight, and heart for so many children and their families who are experiencing life-saving drug shortages.
Greg and Kristina Williams