In November 2018 our lives were changed forever. November 2018 is when my husband and I heard the unthinkable words, “Your daughter has cancer.”
Nothing can prepare you to hear those words. Afterward, we entered a new world, the world of pediatric oncology where everyone welcomes you and tells you strangely that all this will all feel normal soon. How could this ever feel normal? My daughter, Emma, was just a baby—20 months old at the time. We took her to the pediatrician for a rash. We left the pediatrician, checked into our local children’s hospital, and my daughter and I did not leave again for 34 days.
After hearing that your child has cancer, you think how much worse can it get, right? We made it through the first phase. It was rough and exhausting. My little girl was changed forever. She was no longer the baby girl we walked into the hospital with the previous month. On January 9, 2019 Emma went into anaphylactic shock from one of her chemotherapy medications, PEG, during outpatient clinic. She turned blue, she was swollen, even her ears were huge. The doctors and nurses were prepared for this trial. As my little girl laid on my 8 month pregnant belly, not breathing, swollen, while the nurse was shoving injections into her, pumping things into her IV, putting her on oxygen, I just wondered how is this drug her best option?
There is exactly one replacement for PEG. Erwinia. Ewinia is significantly more expensive, but more importantly it is impossible to find. The Erwinia manufacturer is more often than not completely out of Erwinia. It takes 9 months to make and they have quality control issues leading to world-wide shortages.
Emma was able to receive her first series of Erwinia injections. However once again, no one could prepare me for what happened when she received the second course. We arrived to our treatment clinic in spring of 2019 with Emma, now almost 2 years old, and my new 3 day old to be told the hospital had no Erwinia to treat Emma.
As I panicked, her oncologist told me not to worry. A lot of kids don’t receive medicines due to shortages. How could I not worry? Missing doses surely would increase Emma’s risk for relapse. Our nurse practitioner witnessed my panic. She called 6 of the nearest children’s hospitals hoping to find some that could be “loaned out.” Unfortunately, she did not find any at any of those hospitals. But I was not giving up that easy.
I turned to a parent blog on FaceBook, where I met Laura, a mom like me. She had recently gone through and resolved an Erwinaze shortage for her daughter, Abby. She told me about how she was going to fight to change this situation. After getting some advice from her, I spent two weeks calling dozens and dozens of hospitals and pharmacies all over the U.S. as well as Jazz pharmaceuticals and five other countries until I found some. I was relieved. I found it. My daughter would get her chemo. Unfortunately, I would repeat this process two more times over the next few months.
Chemo shortages did not end when my daughter was done with Erwinia. Two more times that year we were faced with other chemo shortages. Fortunately, Laura was there. She had started a non-profit organization called Angels for a Change. Laura helped contact pharmacies and track down medication, and kept me up to date on new information regarding the shortage. What a relief! For someone to take that pressure and stress off of another parent caring for their child with cancer was amazing.
The weeks I spent tracking down Erwinia, I should have been helping my kindergartener adjust to his first year in school. I should have been taking care of my 2 year old with cancer who was very ill at the time, unable to eat, barely able to walk or talk. I should have been enjoying my newborn infant who was three days old when I started calling all over the world trying to find chemo. I can never get that time back. For someone to take that stress off of you and tell you that they will help you and they will get any information you need, it is priceless. It makes parents in this situation feel like they have someone there for them to hold their hand and help them down this long road, removing some of the roadblocks. No parent caring for a child with cancer should ever have to deal with this problem. Thank you Angels for Change and Laura Bray for being there to assist others when everything feels so hopeless.