Our sweet, faithful Jasmine was diagnosed with T-Cell Lymphoma on January 28th, 2020. She was only seven years old. At diagnosis our pediatrician sent us to the children’s hospital to begin treatment. We learned all about how long and involved the process would be. As with all chemo, the treatment has its ups and downs, but our Jasmine pushed through.
Part of Jasmine’s treatment included a drug, Pegaspargase (PEG), which caused her to have an incredibly strong anaphylactic reaction. This was an incredibly scary and traumatic event for us all. Watching Jasmine struggle to breathe as she was attended to by physicians and nurses was one of the hardest things we’ve ever experienced. It leaves you feeling powerless and drained even after the reaction has been resolved.
There was only one alternative drug for Jasmine to take named Erwinaze. She needed 18 vials, and we were told by her physician that there were none available. We just had to wait. So that is what we did. We were not told how long, but Jasmine was continuing treatment without this vital drug. We had no choice but to move on as best we could.
While at the hospital for one of Jasmine’s treatments, I met another mom whose child had cancer. We got to talking and the mom told this story about how her daughter needed a chemo drug and it wasn’t available. I didn’t know this woman, or her daughter, but I just had to ask exactly what chemo, to see if we were facing the same problem. As it turned out, we needed the same drug. We were going through the same problem!
But the other mom said she had gotten help for her child—that an organization called Angels for Change stepped in to help find the drug her daughter needed. She spoke about a woman named Laura who worked with the hospital to get the medication her daughter needed. She said Laura had a daughter with cancer, too, and had gone through a drug shortage. The other mom gave me Laura’s contact information.
We needed help, and where else to best get it than from another mom who went through this already? I sent Laura an email. Laura called me as soon as she saw the message and said she would help in the process of getting Jasmine this drug. That was on October 14th, and eight days later Laura found the medication Jasmine needed, the one we were waiting on in order for Jasmine to finish her final steps of treatment. Our waiting was finally over. That was the last drug Jasmine needed to start maintenance.
Unfortunately, the very last dose of this vital drug caused pancreatitis that sent Jasmine to the ICU. This can happen to about 2% of children on these drugs, and is one of the hardest things about pediatric oncology treatment. Your greatest victory in finding your child this drug can be short-lived because chemo drugs are, ultimately, poisons, and no one ever knows for sure how well or poorly any individual child will react.
Fortunately, the doctors knew this was a possibility, recognized it quickly and were able to treat the pancreatitis. After three weeks Jasmine was released from the ICU—in time to be home to meet her new baby sister and celebrate Christmas.
Yes, while all this was going on, I was pregnant with Jasmine’s sister, Emma, and in my last trimester. I am so thankful to Laura and Angels for Change for helping find this drug. Jasmine is doing well and she loves being a big sister to Emma.