52 People You Need To Meet: #15 Lavanya Scott

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 What I wish I knew before my son was diagnosed with brain cancer…

Nothing. Nada. Zip. Not a damn thing. Like the country song goes, “I wish I didn‘t know now what I didn’t know then”. There is not one thing I have learned along the way that I wish I knew before my son was diagnosed with Glioblastoma Multiforme (GBM), an incurable brain and spinal cord cancer.

I can’t say I wish I knew how lucky I was or that I appreciated my son more. I knew. I was a good Mom. I don’t care if it sounds immodest, I was a really good Mommy. My son had so much love. He was my focus; he was my joy. I knew how lucky I was.   I still got a little thrill every morning when he woke up, just because I got to see him and hold him again. I cried tears of happiness playing on a blanket in a park when he was eight months old. I tried to imprint every detail of that day in my memory, knowing it was my version of Heaven. I cried again at the library playgroup we joined when he was two, and I was laid off from work. I was so happy that I got to stay home and just be his Mom for a while. I knew how lucky I was that I had a child to do these things with. I can’t say I wish I didn’t take him for granted. I didn’t. I knew how lucky I was, how blessed to have this beautiful child in my life. I can’t say I wish I had my priorities right. I had them right.

I wish I didn’t know now that a child is diagnosed with cancer every three minutes worldwide, that seven children in the US die of cancer each day, that brain cancer is the leading cause of childhood and adolescent death by disease, that the incidence of invasive childhood cancers has increased by 29% over the last 20 years. I wish I didn’t know that childhood cancer research receives only 4% of federal funding for cancer research, that less than 5% of funds raised by several major cancer charities is directed to pediatric cancer research and that only two new pediatric cancer drugs that were initially studied in children have been approved by the FDA in the last 20 years.

I wish I didn’t know now that some childhood brain cancers are considered incurable. Although overall 5 year survival rates for pediatric cancer have increased to almost 80%, rates for pediatric brain tumors such as Diffuse Intrinsic Pontine Glioma (DIPG), Gliamatosis Cerebri and GBM are still close to 0%.

I wish I didn’t know now that when parents are given the diagnosis of these cancers, they are not offered hope for a cure. All that can be offered are the options of no treatment or palliative radiation and chemotherapy. Tough treatments that may or may not help with the symptoms and extend their child’s life a little longer. I wish I didn’t know how hard it is to live in a hospital for weeks and months on end. I wish I didn’t know how to take care of a critically ill child at home, to give tube feeds and IV meds, to deaccess a port, to use a suction machine and a pulse oximeter. I wish I didn’t know that childhood cancer isn’t all smiling kids with bald heads running around chasing rainbows and butterflies like they show in fundraisers. I wish I didn’t know that some kids are just too sick to leave the hospital or too sick to leave home most days, let alone take a Make-A-Wish trip.

I wish I didn’t know how to get a four year old ready for Heaven. I wish I didn’t know that you help him pick out his favorite clothes, a stuffed animal and a blanket and pack them up in his backpack. I wish I didn’t know the words to tell him that he won’t have stupid tumors in Heaven, and he’ll be able to talk and eat and walk and run again. That he will have a dog to play with and great-grandparents who will take good care of him. And a brother or sister who didn’t get the chance to be born. That Thomas the Tank Engine and Percy will come to his house to take him to Heaven. That it will be like going to daycare, Mommy and Daddy will hug him and kiss him goodbye, and he will play for a while but then we will go to Heaven to scoop him up and we will all be together again.

I wish I didn’t know now that parents of a child with cancer suffer from Post Traumatic Stress symptoms at alarmingly high rates. I wish I didn’t know that caregivers and even the doctors are haunted by their decisions, even when they were the right ones with the information they had at the time. I wish I didn’t know the beast that grief is. That the flashbacks, the despair, the pain would be so consuming, even at six months, a year, two years, and beyond, I am beginning to think forever. I wish I didn’t know that time doesn’t heal all wounds.  

I am glad I didn’t know any of this before. I wish I didn’t know it now. I wish no other parent had to know it either.

Editor’s note: Every week, it is hard for me to keep my commentary out of these posts, and this week, I just really needed to add something. Before my child got cancer, I think I always sort of thought that something “went wrong” with the kids who got cancer. You know, maybe their parents didn’t make them eat the right foods, or didn’t seek treatment fast enough, or didn’t take them to the right hospital. Horrible, horrible thoughts, but I always thought if it was MY kids we would fight harder. We would find a way to win. But we didn’t. And like Lavanya so eloquently illustrated, no amount of love can save your child from cancer. I was arrogant before David’s diagnosis, thinking that cancer didn’t run in our family so we were safe. NO ONE IS SAFE. Please get involved in the fight against cancer now – before it is you or your loved one suffering. You will never regret trying to help save someone’s life. If you don’t know what to do, message me and I can help you find a way to get involved that will mean something to you.

2 thoughts on “52 People You Need To Meet: #15 Lavanya Scott

  1. You are so so right, L. I don’t want to know what I know, and I don’t want anyone else to have to learn it. We have to stop brain tumors, and everything else that takes away children, and even hope.

    Like

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