The "Cost" of Childhood cancer
Written by Michael Wiggins
This is Michael. I am re-posting an article and something I wrote two years ago. Even when I re-read it, after having lived it with Cannon, I shake my head in disbelief:
This morning, Cannon was off to speech therapy at 7:15 a.m., and as we were getting him ready to go with clothes, shoes, etc., I started to think about the “cost” of cancer to a child and that child’s family. Not necessarily the cost in dollars or financially (although this is great and a burden that many never recover from with or without medical insurance), but rather in terms of cost to the child, such as hearing loss to Cannon because of the use of chemotherapy agents originally developed and approved for adult cancer and not for children and the toxicity level it has, such as the fact that he lay in a hospital bed for over a year and is now developmentally delayed, or even just the time playing or family time that is lost forever. I saw an article this past week about the “cost” of having a child with cancer, and all of the treatment that a child has to endure just to try to live and with no guarantee that the treatment will work, and with almost a guarantee that it will be harmful and cause secondary damage later in life. What I am attaching below is fairly lengthy, but please take a few minutes and read this post entitled “Counting the Cost” by Aaron Hudson, the dad of Nate, who at age 2 was diagnosed like Cannon with stage IV high risk neuroblastoma. It is almost not believable, except I know it is true: I have lived it and watched it myself. Let the amount of treatment and the number of drugs count as today’s Childhood cancer Awareness Fact(s). Truly incredible.
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By: Aaron Hudson as published by Neuroblastoma Canada
So much of life revolves around numbers. The time you wake up in the morning, the number of steps you take throughout the day, the amount of calories you consume, the additions and subtractions of your bank account, and so on. These types of numbers can seem so mundane; however, these accountings of life tell a story and everyone’s numbers paint a different picture.
Some numbers tell you more of a story than others.
In 2009, my son Nate was diagnosed with stage IV neuroblastoma cancer at 2 years of age. Neuroblastoma is a solid tumour cancer, the third most common pediatric cancer and the most common cancer diagnosed in children under one year of age. When Nate was diagnosed, his primary tumor was sitting just above his left kidney, about 98% of his bone marrow was packed with cancer, and he had soft tissue lesions on a number of ribs and his right femur. His little body was full of disease. Neuroblastoma is a quiet beast – when children are diagnosed with stage IV neuroblastoma, the disease has metastasized in about 75% of the cases. In 2010, when Nate was almost finished with his treatment, he relapsed in his brain, bringing our fight right back to the beginning again.
When Nate was diagnosed, my wife and I started to keep a written record of Nate’s treatment. We wrote down everything in a coil bound notebook, often covered with Nate’s stickers, with print outs of blood counts and other important pages stuffed throughout the book. The book was always with us and we meticulously documented almost every aspect of Nate’s treatment. We have filled almost 4 of these notebooks over the last 5 years. They were a way to look up important information, keep a running log of test results, compile lists of questions for doctors, make notes about nursing decisions, and track changes to medication doses. Doctors and nurses often made jokes about our notebooks, but they became vitally important to us throughout Nate’s treatment. There have been many occasions when we’ve looked up something in “the book” and prevented a nurse from giving Nate the wrong medication, giving medication too often, or not often enough. Moving from hospital to hospital, and doctor to doctor, our notes helped us tell them what medications Nate needed and at what dosage. At home, we could never have kept all of the medications straight or administered them at the correct times without keeping these detailed records.
Earlier this year, my son finished his last planned treatment for relapsed stage IV neuroblastoma cancer. Monumental. With this incredible achievement, I decided to take our notebooks and do an inventory of everything that Nate has been through over his almost 5 years of fighting this beast. This exercise wasn’t meant to tempt fate or the universe, it was done out of the desire to tell Nate’s story in a way that might help people understand what a pediatric cancer diagnosis looks like. I took each book and counted.
The numbers below are painful to think about, some more than others. Eighty-seven different drugs. Fifteen thousand ninety-four individual doses of medications. Four thousand two hundred sixty-five tube feeds. Thirty-eight general anesthetics; thirty-eight times we held Nate as he was sedated, his body growing limp with sleep, and thirty-eight times we saw him wheeled off into surgery, a scanning room, or radiation suite. These are some of our most painful memories.
There are so many things that were not counted – the amount of times Nate threw up, the hours spent in the car driving to the hospital, the days spent without his brothers, and all the missed time at school. And no set of numbers can ever capture how any of this felt to Nate. We can never describe his fear, his pain, his anxiety. Nor can we describe his immeasurable courage, strength, resilience, his ability to smile and to make us smile in the darkest of circumstances.
September is Childhood cancer Awareness month. You may hear a lot of different numbers related to this over the next few weeks. About 850 children between the ages of birth and 14 years old will be diagnosed with cancer each year. Approximately 135 children will die each year from cancer in Canada. Two-thirds of childhood cancer survivors will experience long-term effects from treatment which will be classified as “severe” in their lifetime. These numbers may not seem like much in light of adult cancers but if you knew the stories behind each of these numbers, you would never look at life the same way again. The numbers below belong to one 7-year-old boy.
Nate’s numbers, from September 2009 to February 2014:
13 cycles of chemotherapy
11 cycles of immunotherapy
6 bone marrow biopsies/aspirates
1 port (central line) insertion (and removal)
2 central venous line (CVL) insertions (and removals)
405 CVL flushes and heparin-locks
1 g-tube surgical insertion
1 Ommaya reservoir insertion
3 cerebrospinal fluid (CSF) flow studies
19 Insuflon (leg port) insertions
17 MIBG scans (nuclear medicine)
84 peripheral IV starts/needles
318 complete blood counts (CBC)
229 inpatient days/nights (6 different hospitals)
212 outpatient clinic visits
173 nights on IV hydration at home
8 return flights to New York
13 doses of cyclophosphamide
163 doses of temozolomide
95 injections of filgrastim
64 injections of sargramostim
14 days of continuous infusion of interleukin-2
162 doses of isotretinoin (Accutane)
46 days of continuous infusions of hydromorphone
20 days of continuous infusions of ketamine
8 days of continuous infusions of morphine
186 doses of hydromorphone
148 doses of ciprofloxacin
145 doses of piperacillin/tazobactam
25 doses of cefuroxime axetil (ceftin)
1,310 doses of ondansetron
175 doses of dexamethasone
8 doses of hydrocortisone
51 doses of spironolactone
3,462 doses of metoclopramide
2,957 doses of calcium carbonate
521 doses of lansoprazole
157 doses of polyethylene glycol 3350
35 doses of Lugols solution
48 doses of potassium iodide
81 days on total parenteral nutrition (TPN)
4,265 NG-tube or g-tube feeds
871,940 millilitres of formula (145 cases)
Nate is now 7 ½ years old and has just started 2nd grade. We know that we are lucky. We have seen the story end very differently for too many of our little friends and that is simply not acceptable. We can do better as a society for these children. We can fund innovative research to help identify less toxic treatments and find cures for all types of pediatric cancer. We can motivate governments to develop deeper and richer pediatric oncology research programs in Canada. We can give to organizations that make life more tolerable during a pediatric cancer diagnosis. We can help families in our own communities who are struggling to get through each day as they watch their child endure the unthinkable.
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Thank you to all who follow and pray for Cannon and all the kids with cancer that we know and who are right now, today, treating and suffering from the harsh treatments in the world of pediatric cancer. Thank you to all who have offered to educate the community or write their representative, make a donation to a kids' cancer charity, tell a friend or family an awareness fact, make a presentation to a local group or make any effort for kids' cancer. Don't do it for us individually or just for Cannon. Do it for all kids with cancer and for our society. Our children deserve better. When one reads the treatment endured by our children with cancer, is there any doubt that we can do better as a society and should demand more research dollars to find a cure for these kids?
Cannonball Kids’ cancer Foundation is dedicated to funding research for less painful therapies for children’s cancers, more effective treatments and especially the development of therapies specifically designed for children, and ultimately a cure and an end to cancer in children. If you would like to help, please visit our website at www.cannonballkidscancer.org
