“People who are not parents of kids with cancer might not know the everyday struggle.” Angelos Father of Elisabeth
Our daughter Elisabeth was diagnosed with Ewings Sarcoma in October 2020. Under the guidance and supervision of Rady Children's Hospital medical staff in San Diego, she had extremely heavy and exhausting chemotherapy and radiation. In the Summer of 2021, she managed to fight the disease and the doctors announced our daughter was in remission. What a great day that was!
Unfortunately, all patients with Ewing’s Sarcoma spend the rest of their lives in fear of cancer coming back; they must have checkups every three or six months. Our family was one of the lucky ones. Our child had a normal life, except for the regular checkups–until 2023. At the end of that year, we received bad news that there was a new spot in her left lung.
This time we knew the drill. Surgery, chemotherapy, and possibly radiation to fight, and hopefully beat the monster again.
We started chemotherapy thanking God that this time was not as heavy doses as the first time. We remained hopeful that things might work out for our kid.
Many people who are not parents of kids with cancer might not know the everyday struggle to be optimistic, support their kids and each other, and handle multiple other daily tasks. We also have to keep up with programmed tests and chemotherapy schedules, deal with insurance approvals, work and home responsibilities…the list goes on.
After completing the 1st chemotherapy session, we received a call from her doctor informing us that one of Elisabeth’s main chemotherapy medicines, Topotecan, was in national shortage. We were told we had to discuss an alternative program with combinations of other medicines since it was unknown when this vital medicine would be available again in the US market.
As parents, we lost the ground under our feet. How can crucial medicines for treating children suffering from cancer not be available? How do hospitals specialized in treating kids not have alternatives or a mechanism to prevent these kinds of shortages? Why do patients, like us, basically depend on one source supplying this medicine?
My wife and I started calling friends and family members to find out if we could find the medicine in the US or abroad. The hospitals informed us to expect Topotecan to be available again in one or two months depending on the manufacturer, but we knew we couldn’t wait. Elisabeth needed the therapy now! After a week of exchanging messages, calls, and emails with peers we have in the US and Europe we found a non-governmental organization in Germany that could supply us with the medicine. The problem now was how to bring it to the US?
Unfortunately, we kept hitting obstacles. Most were bureaucratic: agencies telling us, we cannot bring the medicine in from Germany, asking who is the provider, how it is going to be shipped, how will it be recorded at the hospital’s pharmacy, and what is allowed by the FDA?
We were so devastated because we managed to find the medicine, but now the hospital didn’t have the mechanism or the ability to receive the medicine we found!
In my desperation, I suddenly remembered that I saw a CNN report about a lady who started a non-profit organization. I recalled their mission was to help patients with problems accessing medicines in shortages after her own child experienced a similar problem as ours years ago.
I immediately started searching everywhere on the Internet. I found the report on CNN mentioning their website. I called and emailed them, wanting to be sure that they would get my message.
The same day I received a call from the founder, Laura Bray herself. The first thing she told us in her soothing and reassuring voice was, “Do not worry, we will find a solution. It is not your task to find the medicine. We are here for you”.
And she meant it! After giving her permission to act on our behalf and communicate with Rady Hospital, in less than a week Laura and her Organization, Angels for Change, managed to coordinate everything. They found all the rest of the quantity needed for our daughter to finish her remaining chemotherapy cycles, and started to find supply for the full hospital need too!
Since the first day we communicated with Laura and her team they have been in constant contact supporting us. They have kept us updated with their communications with Rady when shipping them the necessary quantity of Topotecan for every round of Elisabeth’s chemotherapy.
A thank you to Laura Bray is not enough! Angels do exist, and they are here as Angels for Change.