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A Month I Hope No Reader Must Face the Loss of A Child

By Mairead Finn

September is Child Cancer Awareness Month and a month where I hope no Greenwich Sentinel reader needs to contemplate the loss of a child. I do hope you care about this month as I need you to be involved in lobbying and funding research to get equity for future pediatric cancer patients that embark on this journey called cancer. And I need your grace. I will have to admit it is the most soul searching, gut wrenching, chest crushing loss and tragedy that can befall a family. You see, I lost my youngest daughter, Vivienne, to pediatric cancer when she was only 11 years old. I sometimes feel the presence of Vivienne in my heart and marvel at the double rainbows seen in the sky and heart shaped stones and leaves littering my path that remind me of her. But, some days I don’t feel her at all. A numbing silence and void.

I will have to admit from the get go my baseline mood was happiness. I never fixated on problems and I never asked to be pitied. I was grateful for my lot in life. Yet, now being hurdled down the route of a bereaved mother of a child who died from an inoperable cancerous brain tumor, I find I need my community to give me grace to carry on. Every ounce of my being wants to be with my child. Even smiling hurts me, because I feel like I’m cheating Vivienne out of the reverence of missing her.

The grace I ask for is what all parents need after losing a child to pediatric cancer. Sit with me and do not turn away from me. Talk about the lost child and never avoid mentioning his or her name. This child lived and is loved. Traveling down the road of pediatric cancer is like being shipwrecked on a deserted island. I see people avoiding me in the grocery store, I hear them say it is too painful to talk to me as a grieving parent since these people claim they don’t know what to say and don’t want to say the wrong thing. So, these people do what is right for them and leave the grieving parent alone on the deserted island.

Grace can also be given to those families grieving for the terminal pediatric cancer diagnosis of a child in the form of simple actions. Perhaps taking siblings to athletic practices or providing Uber Eat cards for the dinners the parent will never get to make can be part of your grace offered to an anguished parent. Parents of pediatric cancer children are navigating treatments, radiation, immunotherapy, symptoms of chemotherapy, school, sports, washout periods between clinical trials, researching the next new clinical trial, and trying to reduce the anxiety within the family. Instead of sending an email asking for an assignment from the grieving parent in the form of ‘what can I do to help’, express your empathy for the family through graceful actions.

Empathy cannot be expressed through distancing yourself from a grieving parent. Our natural reaction to offer privacy to a parent who is dealing with an ill child or who has laid to rest a child who was taken from this earth too soon by pediatric cancer can be perceived as callus. My family was grateful for those playdates with Vivienne who needed to giggle with a friend to be distracted from her reality. I was grateful for the grace of friends who called me, took me to lunch or stopped by the house, thereby, fueling my ability to handle another day in my nightmare.

Reflecting on our own humanity is uplifting. Being a friend or helper to the downtrodden is one of the most rewarding actions to give and receive. For Vivienne and my family traveling through the dark clouds, there emerged heroes who checked on us regularly and surprised us with their empathetic hearts and love. They shone their light brightly and gave us optimism. They sat with us in our pain and they didn’t need a trophy, but wanted to let us know they were here for whatever the next day brought. They sent us pictures of candles being lit, prayers and thoughts. Please do not think any of this is meaningless to a person in pain and show this grace to the next family you encounter who is faced with pediatric cancer.

Be gentle with a family suffering and give them the respect that is warranted. Maybe write a condolence card and let your heart be seen. Sad emojis on Facebook don’t count. I once had a lady say she didn’t want to give her condolences so as not to remind me of Vivienne’s death. I prodded it out of her anyhow! I will assure you there is not a second of any minute of any day I don’t feel my child’s absence. A parent will never ever get over a child’s death. Yet, please don’t take that grieving family off your invitation list. Such loneliness only increases life’s sufferings.

The grim truth of pediatric cancer can sometimes be seen most in the statistics of its reality. One in 285 children will be diagnosed with cancer before the age of 20. Approximately 16,000 children are diagnosed annually with childhood cancer in America. Within 5 years, 20% of those children diagnosed will die. Childhood cancer comprises of more than 12 major types of cancers and over 100 subtypes. Due to the lack of research, there are only 4 drugs pharmaceutically engineered for a child’s body in the last 30 years. Sadly, as was the case with Vivienne, she trialed adult drugs and was forced to deal with the consequences of the toxicity of these drugs in the hope of a cure. Many treatments will affect a child’s fertility and endocrine system. There are over half a million children living in America that are childhood cancer survivors. They are immune suppressed and 2/3’s of them will deal with life threatening ailments before the age of 50 because they had to endure toxic treatments in their childhood. Pediatric cancer is not a rarity.

Those families with children diagnosed with pediatric cancer will be ushered into a small room where a team of doctors utter the worst 4 words that a parent can hear “Your child has cancer.” Disbelief and numbness are exasperated by the fact that 25% of families lose 40% of their annual income as a result of childhood cancer.

What do you do when you walk out of the room after being told your child has cancer? One very helpful non-profit that assisted our family upon diagnosis was Cancer Commons. It truly is advanced cancer care. They can review your treatment plans and find the very best in treatment options. They helped us on September 6, 2019 when we told Cancer Commons that Vivienne’s MRI showed her brain cancer tumor was growing back and we were frantically trying to get her into a new clinical trial. They helped us mitigate symptoms and figure out the best approach for our next trial. To have access on the phone to a nurse practitioner 24/7 is comforting to say the very least.

Fortunately, our geographic location gave us access to some of the very best hospitals in the country for pediatric cancer. I will never stop thanking the oncologists, nurses and caregivers of Memorial Sloan Kettering and the team at Yale New Haven Hospital. They never left us without hope until all hope was gone. They were respectful of my child and cared and loved her as if she was their own.

Lobbyist groups are laboring hard to push funds into pediatric cancer research and I want to advocate and endorse them. The federal budget for the National Cancer Institute is $4.6billion and childhood cancer only receives 4% of this amount. Demographically, children account for 20% of the country’s population. Pharmaceutical companies fund 60% of adult cancer research and no childhood cancer research. To turn “This Phenomena” around, many foundations like “Smashing Walnuts” and “The Musella Foundation for Brain Tumor Research and Information” lobby government to find non-tax paying monies to fund childhood cancer research.

The Gabriella Miller Kids First Research Act 1 (GMKF 1) authorized $12.6 million per year of monetary penalties imposed upon pharmaceutical companies, cosmetic supplement entities and medical device manufacturers to fund pediatric cancer research. By 2023 this funding will run out and help will be needed to lobby your state representatives to support GMKF 2 H.R.623. This bi-partisan legislation will help fund pediatric research dollars and create a database of knowledge where all scientists can share clinical trial findings. This pediatric cancer research database will support the development of computational tools that are very large, with complex genomic data and clinical trial sets. I applaud Senator Tim Kaine and Senator Warner again for picking up this legislation and fighting to secure dollars for pediatric cancer research. GMKF 2 H.R.623 was introduced to the House of Representatives in April 2020 and is now is in the House and Senate awaiting approval. Gabriella’s mom, Ellyn, is a regular at Capitol Hill working with officials to ensure this bill will get funding each and every year.

The Promising Pathway Act H.R. 3761 will allow pharmaceutical companies to petition the FDA for provisional approval for drugs that have passed early stage clinical trials and have proven safety and efficacy rates. This act has so many upsides. The current system of FDA approval is too rigid and too slow. This slow system dramatically increases the cost and time to bring a new drug that shows promise in the labs to clinical trials. End result: the new drug never makes it to the market in an attempt to save a child’s life. Introduced in June of 2021, this act once passed will allow patients access to treatments quickly and combination cocktails will be more readily available. As many know, rare cancers need combination drugs to have the best opportunity of success.

An article published in Forbes.com indicated that the funding for childhood clinical cancer trials in 2008 was $26.4 million, federal funding for AIDS research was $254 million and funding for breast cancer was $584 million. Why the great divide between dollars spent on these diseases and pediatric cancer? Can it be because children are not among the voting population of this country? Nonetheless, these children have families that miss them dearly and want to highlight this social injustice of distributed cancer research dollars. Children’s lives matter and they need a voice to assist in funding cures for their cancers.

My husband and I are honored to be Family Partners with ChadTough Defeat DIPG (Diffuse Intrinsic Pontine Glioma). A non-profit organized to fund research for the rare pediatric brain cancer, DIPG. In 2015, the Carrs and Mosiers endured the tragic loss of their sons and formed two separate foundations to invest in clinical trials to go after a cure for this horrendous disease. They have come together and it is not a matter of “If” but “When” they will find a cure. To date they have funded $12 million in cutting edge clinical trials for DIPG. Our daughter was also lost to DIPG. It is a sad fact that families who lost a child to pediatric cancer are forced to fundraise for a cure. Remembering the statistic that 1 in 285 children will be diagnosed with cancer before the age of 20, it is clear that these pediatric cancers are not rare occurrences. Pediatric cancers fuel the nightmares of parents. My family understands this and as such raising awareness and money for a cure to pediatric cancer is now my passion.

Family friends, Alec and Cristy Fraser of Old Greenwich are literally cycling coast to coast across America in September to bring awareness to childhood cancer. Their son, Julian, lost his heroic battle with Osteosarcoma at the tender age of 20. The parents are honoring their son by raising awareness and funding for Memorial Sloan Kettering’s “Cycle For Survival”. Alec and his best friend, Jamie Meehan, are biking across 17 states beginning from Rocky Point, Connecticut August 15th and ending October 21st in California where they will host The Julian Fraser Memorial Water Polo Tournament at Santa Clara University where Julian was a student. Follow their journey via satellite: share.garmin.com/73AZN. I applaud their drive and efforts to honor their son. Go Team JF!

August 31 would have been Vivienne’s 13th birthday and marks a life of future adventures and dreams which will never take place. I ask that in September you please be aware of the children lost to pediatric cancer and the families who push forward each day without them. Be aware of what you can do to honor your friends going through such a journey such as lobbying and fundraising on their behalf for greater pediatric research dollars. Or perhaps supporting these families by driving siblings to school, preparing a cooked dinner for the family or simply sending a picture of a flower living in a barren dessert. Never shy away from mentioning those children who have been lost to pediatric cancer to their families. Show grace to these families by showing up to support them. Kindness matters. CS Lewis once wrote. “My child may have died; but my love – and my motherhood never will.” Acknowledge the month of September as Childhood Cancer Awareness Month and bring awareness for funding, lobbying and support for the most vulnerable in our community.

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