Dear David Van Andel,
Let me introduce myself. My name is Maya Thompson. I am the mother of Ronan Thompson. A little almost 4-year-old boy, who died of Neuroblastoma, just over 2 years ago. Ronan was diagnosed at the age of 3 and fought with everything he had for 8 months. To watch your child die changes you in a way that I hope you never have to know. It has changed me in many ways. Some ways are good, some ways are bad, but I wear my scars with pride in honor of my son. He is the reason I will now be a voice and a fighter for all the kids, who are unfortunately dealing with this monster known as childhood cancer, for the rest of my life.
My new life without my son now consists of fighting for him daily. There is nothing like the love between a mother and a child. It’s an unbreakable bond that not even death can steal. While my fighting for my son, I have formed an amazing army of people along the way who are in an uproar about childhood cancer, the awful statistics, the lack of funding, the barbaric treatments, etc… They have stood by my side and together, we are making some amazing things happen so that hopefully one day, a mother like myself, won’t have to watch her child die.
We did everything we could for Ronan. We saw the best doctors, sought out the best advice, followed what we thought was the right treatment for his disease, but unfortunately, that just wasn’t enough and time ran out for our son. Towards the end of Ronan’s treatment, we sought out the help of Dr. Giselle Sholler. Ronan’s disease progressed quickly and he died before we could get him under the care of Giselle.
I took some time after Ronan died, to let myself fall apart only so I could be put back together again with the strength I needed to go on and continue to fight on for my son. While doing this, I did a lot of research and reading on the best doctors for this disease and I quietly kept my eye on Dr. Sholler. I started attending some conferences where I knew she would be in attendance. My husband and I made a trip out to Austin, Texas to hear her speak at the NMTRC conference. I wanted to do my research on her to make sure she was the right person that I was going to commit to helping support. I take this all very seriously, because at the end of the day, it is my son who I still answer to, even if he is dead.
Dr. Sholler’s credentials are unbelievable as you know, and seeing the way she is impacting this disease is truly remarkable. But what really sealed the deal for me was getting to know her personally. Never in my life have I seen a doctor who is not only brilliant, but who also truly cares for her patients, the way she does. With this said, when I decided to support Dr. Sholler, I committed to support her in any way that I can, which is the whole reason behind this letter.
A few months ago, it was brought to my attention that Dr. Sholler would be parting ways with the Van Andel Institute and her research would now be housed with Spectrum Health System. I was of course saddened to hear this news, because we all in the cancer world had such high hopes from what would come from her collaborating with such a powerful institution. What I have learned this spring and early summer literally breaks my heart.
As you know, children who fight cancer are trying to not only survive, but just be children while their parents search and pray and hope for their cure to be found. Children depend on the voices of advocacy surrounding them and too many times, other research overshadows that of pediatric research simply because children do not make the “big decisions.” Children do not vote; they do not have the chance to understand or speak out on behalf of themselves; we are their voice.
I have quietly stood back, trusting that Dr. Sholler’s transition from Van Andel to Spectrum would work itself out. After all, everyone’s number one goal is to help the children who so desperately need it. But, I have been told that a clinical trial was dramatically delayed due to a contract issue. It is my understanding that several parents and donors reached out to Van Andel desperately pleading for a quick resolution. I believe that some parents even reached out to you directly. After a long delay, it seems that the issues with the contract have finally been resolved. Unfortunately, there was a period of time where children needing treatment were unable to enroll in this particular trial. It seems to me that contracts should not get in the way of the helping to save kids’ lives.
It has also been brought to my attention that many of the funds and equipment that Dr. Sholler was using for her trials are now being held back by the Van Andel Institute. One would just assume that all funds and medical equipment donated to Dr. Sholler’s program while she was working at the VAI would simply move with her to Spectrum Heath where she is continuing her program. Many generous people and organizations donated a lot of money to Dr. Sholler’s program. The purpose of the money was not to produce a robust bottom line for a research institute, but rather, the purpose was to provide Dr. Sholler and her team the resources to fight Neuroblastoma. As such, I am saddened and confused to learn that a significant amount of money and equipment is being held back by the Van Andel Institute.
These two recent developments lead me to the pivotal question: how did the message got so lost? What is more important than the lives of the kids? As a mother myself, I can tell you nothing is more important. As I a mother of a dead child, who died from this disease, I can tell you I will do anything in my power to help support the doctor who I know is going to change the face of this monster.
Please help me in supporting Dr. Sholler, whom I know you believe in. Please, I implore you to not simply forward this letter to the lawyers and bean counters. Please, no more lawyers’ letters. Please, no more parents’ and donors’ e-mails ignored. Please, no more lengthy delays.
Please, do what is right. Please, give Dr. Sholler the funds and equipment so she can focus on what she is doing — treating and saving the lives of these kids who deserve to have a life.
At the end of the day, I know we all want the same thing. We all want to treat kids, give them better outcomes, and survival rates, and ultimately, a cure for this disease. I may never get my son back, but I won’t ever stop trying in whatever way I can, to make him proud.
Thank you from my forever broken heart, for listening,
Mom to Ronan and Cancer Fighting Ninja for LIFE
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