Guest speakers

Melissa and I were invited to speak at Rady Children's Hospital Auxilary "Holiday on Broadway" fundraiser two weeks ago. We thought it was a good idea for two reasons: One, the fundraiser was supporting pediatric cancer research at RCHSD. Secondly, we could tell Max's story and hopefully by doing so, create more awareness about neuroblastoma and our personal efforts to fund promising research that can be used by Max and his fellow NB buddies soon, if not now!

Our role was simple - to soften up the crowd with our (Max's) story prior to an auction, the proceeds of which would benefit pediatric cancer research. So, all in all a worthy cause and one in which we didn't mind participating.

As I mentioned to one of the women at our table, realizing it was perhaps a little gouche but altogether accurate thing to say, we were "the parents no one want to be," ie, the parents of a kid with cancer.

As most of you know, we are not afraid to play the cancer card and above all are willing to use Max as a hook to draw attention and funds as long as the people and the cause are something we personally trust and believe in. To that end, the night was a success and I believe they raised close to $50K. We also had the pleasure of sitting next to RCHSD president and CEO Kathleen Sellick and her husband Phil. A delightful couple, they were surprised when we told them Max has NB, because Phil had neuroblastoma as a young adult 20-some years ago, so its great to know that the head of our hospital has some insight to our plight with NB.

We were the only speakers for the evening. I spoke for about two minutes about how money follows the market and most research funding therefore goes the way of breast, lung and prostate cancers. Pediatric cancers make up such a small market... I let Melissa tell Max's story, and here's what she said:

Max was 3 ½ years old when he was diagnosed with stage 4, high-risk neuroblastoma – a very aggressive cancer of the sympathetic nervous system that quickly spreads to other organs including the bones.

I remember him lying in the hospital bed shortly after we knew his diagnosis. His little body was frail, anemic, and he was in such pain that he was on a constant morphine drip. He couldn’t move and it hurt to be touched – which was awful for all of us because he;s a snuggler. He looked at me and said in a tiny voice, “Mommy, the doctors are never going to make me better.”

He had a shock of blonde hair, long eyelashes framing his blue eyes, and already had a great sense of humor. His hair and eyelashes soon fell out following his first chemotherapy treatment, but his good spirit remained.

He would tell the nurses, “leave me alone” when they came into his hospital room because he knew they were going to have to do something to him. It wasn’t long before he found that he could be in control - of the television and of how he was touched – and soon the nurses could do whatever they needed to do as long as they didn’t block his view and followed his particular instructions for certain procedures – which the nurses did with smiles on their faces.

Max underwent the standard treatment protocol for his diagnosis which included 6 high-dose chemo treatments, radiation, and a stem cell transplant – all in six months. His treatment went off without a hitch and he was NED – no evidence of disease - shortly after he turned 4.

One year later, right after his 5th birthday, a spot appeared on his follow-up scans. We soon found out that his cancer had come back. We also found out that even though 80% of kids who have had his diagnosis relapse – there was no treatment plan that was proven to make them well again. Just a number of ideas to choose from.

With the guidance of Max’s oncologist, Dr. Roberts, and another cancer parent, we agreed to sign Max up for a clinical trial based in Vermont. Max was only the second child on this trial, but it is a great trial, for a promising drug, and we believe it has done wonders in helping Max combat his cancer.

In the past year, Max has received 10 high-dose IV chemo treatments, 2 rounds of radiation on his spine, and has taken low-dose daily chemo for the past four months – this in addition to the trial drug that he was eligible to stop taking in March, but we decided it was truly a help and have kept him on it.

My husband and I have learned through this process the deficit of treatment possibilities for children with cancer. Lab research and clinical trials for pediatric cancers are grossly underfunded across America. We’ve learned that every 16 hours a child dies from neuroblastoma alone. We’ve learned that the best way to make a difference in Max’s life is to tell people about his battle.

Mother Theresa said, “If I think of the many, I’ll never act. If I think of the one, I will.”

We hope that you will think of Max right now. Think of his beautiful blonde head and fun blue eyes. Think of Max teaching his two year old brother how to play Legos and dressing up like a super hero with his favorite blanket as a cape. Think of how much Max loves sharks and all of his friends in Mrs. Sturt’s 1st grade class. Think of Max riding his scooter and doing taekwondo, and running in and out of the waves at the beach with his big sister. Think of Max lying in a hospital bed getting poked through his port so he can get his IV chemo. Think of Max laying in a hospital bed one week after chemo too tired to move waiting for a blood transfusion. Think of Max being fed through a button in his tummy everyday because the chemo he’s received has ruined his taste. Think of all the fun Max misses at school when he has to be at the hospital for all his treatments and scans.

Think how nice it would be if Max didn’t have cancer.


Anonymous said...

I can only imagine the impact that you guys must of had on the people listening to your story. I know you guys have influenced my life in so many ways.

Anonymous said...

WOW... So well put! I can imagine how much you influenced that audience. The work you do and the time you spend pushing for a cure for nueroblastoma is making a big difference. I'm very proud of both of you.

Love, Mom

Anonymous said...

Children's couldn't have picked a better couple to speak. Max instantly captures your heart, and I'm sure your story captured the hearts of your listeners.
I'm reminded of a saying my father used to say, "Nothing worthwhile in life is ever easy." You are certainly going through the hardest thing imaginable...but it is and will continue to make a positive difference.

Anonymous said...

Hi Max

You don't know me but my prayers are with you. You are a very brave, strong little boy. I pray that God would bless others through you and what you have been going through. My heart goes out to you and your family. May the Lord be good to you and may you all better! Stay strong and thank you for encouraging all of us who have our health and can make a difference to help those like you who struggle. Love Carmen Espiritu

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