Day: August 5, 2013

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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“Hey guys, do you want me to move back in with you?”

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Ronan. Yesterday was a shit storm of a day, emotionally wise for me. I think I spent the day crying for almost 24 hours straight. It’s not enough that I have a dead kid, but sometimes I feel like I am supposed to be saving the world, along with everyone else around me. Most days I can handle it, but then after taking on so much, for so long, I will end up cracking. I had a super intense day of missing you yesterday and I just wanted a day where I could sit quietly, miss you and grieve for you, but I had some other things come my way that I needed to try to take care of. I had a day of feeling like I was doing nothing right, I was hurting everyone’s feelings, and all the expectations that people expect from me… well I just cannot not live up to them. I don’t think I’ll ever be able to live up to them. It’s hard for me to maintain relationships where people expect certain things of me. I will eventually let someone down, and I’m really hard on myself about that. It’s a kind of pressure that is just sometimes too much on top of all of this so instead, I just shut down and go away. I am just trying to do my best and I am fully aware that my best is often times, not good enough for others. I am always sorry about that and this is why the people who I am closest to in my life, know not to expect a thing. It’s really the only way I can do friendships now. They expect nothing and go completely bananas when I do rise up to the occasion and my hard work seems to be paying off. Take Stacy for instance. We had a phone call the other day with Bret Michaels assistant to get everything lined up for something we are doing with him. Bret has been so supportive of you and this fight, and I am so thankful for that.  About an hour after hanging up the phone, I saw I had a message from Stace. I listened to it and she was going on and on about what amazing things I have done, “I am so proud of you. Look at everything you have done, and you just keep going on with more and more amazing things. Ronan would be so proud of you.” I listened to her message, sobbing of course. Her words meant so much as they always do, but on that day especially as the day seemed to be extra hard for me. Stacy called to let me know how much she loves me, even when I can be bratty/hard to understand/crazy/overly emotional about everything related to you; because that’s what true friends do. They don’t want to tear you down, true friends are there to lift you up, especially in times that seem extra hard. For me, those are most days and Stacy never seems to forget that. I am truly grateful for friends like her.

It feels like a lot of people forget that at the end of the day, despite all the good I am trying to do, I am still just a grieving mom. It’s been hard to navigate the people who have come into my life and I’m suddenly having an identity crisis of being paranoid that I have been used and feeling like people have taken our situation tweaked it to their advantage. When it comes to all things  you, your life, your death, and everything that has come after, I am so protective and so sensitive to every little thing. I was driving to the airport to pick up your daddy and I was crying so hard I could barely see the road. I pulled over to take a little break and I also wanted to send CC a little text to check up on her as she was suddenly very on my mind. It turns out she too was having a shit storm of a moment exactly when I texted her. I called her and she picked up, crying too. I couldn’t even talk. “What’s wrong, what’s wrong, what’s wrong! Talk to me!” She yelled into the phone. Talk I did. Or more like the blubbering cry that I have come accustomed to. I could hardly get any of my words out, but she always knows what the huge problem is and why it is that I will forever be crying. I told her what it was that had set me off. I listened to her, listen. She calmed me down, but was still crying herself, therefore, I continued to cry as well. So that’s pretty much what we did on the phone for a good 45 minutes, was talk and cry and talk and cry. I hung up feeling sad for my friend and sad for myself but so thankful to have the friendship that we do. One where she knows I will never judge her and she will never judge me. I think back about going through all of this and the way Charisma treated me. Like her dying little flower that she would let wilt and die, but she would always be there to water it. I think back to the conversations I had with Charisma after you died, Ronan. A lot. They got me through some really dark times. I remember being on the phone with her a lot, always late at night as I would go outside and pace back and forth. “Maya. I didn’t like that last blog post. I’m scared for you. What can I do? Walk me through your head right now.” I would walk her through things and I always appreciated how honest she was with me about how hard this was, to watch me go through. She never whispered about me, she whispered with me. It doesn’t get much truer than that. That is a good soul. That is a good friend. I know she will always be here to whisper in the dark with me, Ronan. I always do this on the phone with her while looking up at the stars wondering if you can see me. Did you see me all those times, pacing like a wild animal, trying to explain to Charisma the method behind my madness? I always felt like you did. How I hope you still do.

We are back in Phoenix. Summer lazy lifestyle is officially over. It was a good summer, but for me, it was a very intense hard summer as well. Some reasons I will disclose. Some reasons I will not. Let’s just say I have been distracted by some very intense things going on inside the cancer world and on a personal level as well. Summer was hard and heavy, but I imagine it always will be. Your Sparkly said it best after listening to all that was going on when he said, “Darling, I’m so sorry you’re dealing with all of this, but you cannot save the world.” I know this be that doesn’t mean I won’t continue to try.

On my last night with your Nana and Papa, I was sitting on the floor with Poppy and we were all kind of watching, “Orange is The New Black,” (my new favorite series that I am NOT embarrassed to say I watched in an 24 hour period) I looked up to see your Nana sitting on the couch and Papa Jim in his chair.

“Hey, do you guys want me to move back in with you?! That would be so fun!”

They both just kind of laughed and Papa Jim said something like, “Oh, yes! Please do!” In his smart-ass voice.

“I really would. You guys are really awesome roommates.”

I don’t think your daddy would be down with that, but the bottom line is, I LOVE BEING HOME. With my family, so much. We are always so well taken care of and loved there. Thanks, Rosa aka, Mom. You are the best mom on the planet and I love you so much. Thanks for ALWAYS loving and never judging. Even when I was at my worst. We miss you and Papa Jim so much already.

Alright, little man. I need to go now. I’ve got another post to post after this, explaining a little about what has been going on in the cancer world that I am just SICKENED over. It’s something we’ve been dealing with for months, but only now am I going to speak very lightly about it. Why can’t people in this world just DO THE RIGHT THING? Especially when it comes to bright minds who are only trying to save the lives of others.

I miss you. I love you. I hope you are safe.

xoxo