An Open Letter to Mr. David Van Andel,

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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,

Maya Thompson

Mom to Ronan and Cancer Fighting Ninja for LIFE

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28 responses to “An Open Letter to Mr. David Van Andel,”

  1. Beautifully written….truly. You are on my mind and heart often…my daughter and I stumbled across Ronan on her iPhone and we both wanted to stop and listen. It’d been awhile since I’d heard it, and once again was so moved by how beautifully Taylor Swift honored your son. Please know that even those times when you do not feel like you are, you and Ronan are still impacting so many ❤❤❤

  2. Maya, just about to start work with tears streaming down my face! You got me again ! What a beautiful letter. I hope you are heard. My heart has broken all over again for you, Ronan, for our world xxx

  3. Unfortunately, this gets into the ugly fact if the pharmaceutical wars and crap that goes in with these companies. God bless doctor sholler with God & supportive parents like you Maya hopefully the uglies won’t get in her way!

  4. Beautiful letter Maya. Is there anything we can help you and Dr. Sholler with – start an online petition, write more letters, calls, etc.? FU CANCER!!!

  5. This absolutely sickens me. What is wrong with people? What happened to humanity? It’s fucking LITTLE BABY CHILDREN DYINGGGGGGGGGG!!!! i started reading this blog from the beginning a few months ago and my life has honestly been changed by Ronan. I’m in grad school and I know plan on using my MBA to fight pediatric cancer (in the right way!) as opposed to supporting money hungry, sick, awful humans. Sorry for the rant. Love you Maya. Fuck Cancker. Not fixing the spelling, it doesn’t deserve it.

  6. Great letter Maya! I think a online petition would be a great idea. I am here to suppot you.
    Good Luck.

  7. Love you Maya and your strength and honesty, and passion. I think any letter sent from you with a picture of the most magnificent, beautiful creation God has ever created right at the top, will move mountains. Who could ignore that perfect little boy? It makes your pain more real somehow. In a way words may not, to the hardened heart of a business man. How can you have something so beautiful and perfect and then have it gone, in the blink of an eye? It will make him think-make him scared that his perfect, beautiful creation at home could maybe, possibly, God forbid!, face the same battle. Even though that is an impossible thing for any parent to imagine, for one brief second, before he buries it, it will be there. And it will bring him to his knees. And he will share it with all the other business men and he will become a warrior with you. Hearts will open and find a way to do what is right. God, hear this and make it happen. Please. For Ronan, For Maya and for all the other mommies out there who can’t, won’t and should never let go. Amen.

  8. Perfectly said! You have the best way with words because you speak the truth and from the heart. Proud of you! I hope you really put the ninja part in there! Made me smile!

  9. I feel like we readers have a front seat to a movement.

    Your letter was perfect! Cheering you on, Go Maya Go!!!

  10. Just sending much love and warm thoughts your way. I hope that this letter gets directly to Mr. Van Andel and I hope it speaks to his conscience (if he has one).

  11. Maya, I think you will someday have the power to save the whole world. You are a beautiful soul, and Ronan is without a doubt very proud of his mama!

  12. Natalie Levesque Avatar
    Natalie Levesque

    You have a way with words that is going to change this brutal cancer world and already has started to. I am with you mama.

    Sent from my iPhone

  13. Good luck, Maya. I really hope Mr Andel reads this letter and it all works out 😉 . Oh and like amourningmom said, if you need any help, just say…

  14. Oh, wow. What powerful words. What infinite love. If anyone can change the world, it’s you, Maya. I wish you the strength to keep doing what you do — for everyone’s sake. But I’m not worried about that — you’re as strong as they come, backed by armies of loving supporters, and guided by the memory of your beautiful boy. Hugs.

  15. Maya, thank you for making us aware of this problem. We, here in Grand Rapids, have heard and read about Dr. Sholler’s transition to Spectrum Health. We haven’t heard about the large amounts of money that have not followed her. I am truly disappointed in reading that Van Andel has so inappropriately handled the money she received. Two of my children see many doctors at DeVos Children’s Hospital and I would love to find out how we, the public, and patients at DeVos, can make sure the money makes it to where it belongs…right in Dr. Sholler’s hands.

  16. It made me feel sick to read that, Maya. I’m sure it was not easy to write such a calm and straight-forward letter. I know my thoughts were filled with all sorts of name-calling and F-bombs! Do please let us all know if there is something we can do – petitions, letter-writing, etc. I wish so much that I had some connections that could help in a more direct way.

  17. When forwarding future donated funds, is there any way the Ronan Thompson Fund can legally ensure that the funds are ushed for specific trials and doctors? It seems to me that many charities are pulling similar stunts and it seems incredibly unethical. People are so generous and I feel as if too many charities have taken advantage of this.

  18. there is nothing more powerful than the words of a mother that has been on the front lines in dealing with the Cancer Monster. thanks for all you are doing. please post something if an online petition is formulated.

  19. How can I pass this on to the person you sent this letter. to. I want to tell him childhood cancer is NOT ABOUT politics it is about curing childhood cancer.

  20. You are awesome Maya just amazing…Ronan must be so proud! Poignant letter. Thank you…I’m fighting with you all day everyday.

  21. Here is hoping they do the right thing and give Dr. Sholler the assets she needs to continue her research. Praying Mr. Van Andel makes the decision based on his heart, not his pocketbook.

  22. Beautifully done!!! Thinking of you!!!
    xoxo

  23. Just to say, I love you Maya, I love you Roro … and thank you for everything !!!
    To the moon and back, FUCK YOU CANCER

  24. Well said! I hope he reads it, I’m sure some of us wouldn’t mind sending / emailing this in mass to make sure!

  25. FU CANCER and FU “higher administration” that has clearly FORGOTTEN what they were hired to do. Way to go Maya !

  26. I am so crazy about you, Maya. You are the warrior mother I want to be. KEEP FIGHTING FOR HIM!

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