Counting the Cost

September 9th, 2014   |   Posted in Awareness   |   By: Aaron Hudson   |   6 comments

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 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
29 radiation treatments
38 general anesthetics
17 surgical procedures
1 tumor biopsy
2 tumor resections
6 bone marrow biopsies/aspirates
1 port (central line) insertion (and removal)
2 central venous line (CVL) insertions (and removals)
170 CVL dressing changes
163 CVL cap changes
405 CVL flushes and heparin-locks
1 g-tube surgical insertion
1 Ommaya reservoir insertion
1 femoral line insertion
3 cerebrospinal fluid (CSF) flow studies
16 CSF taps
15 NG-tube insertions
10 g-tube replacements
19 Insuflon (leg port) insertions
1 stem cell harvest
1 stem cell transplant
1 stem cell rescue
23 CT scans
17 MIBG scans (nuclear medicine)
13 MRI scans
21 x-rays
10 ultrasounds
10 echocardiograms
5 electrocardiograms
4 PET scans
4 GFR scans
1 bone scan
9 audiograms
84 peripheral IV starts/needles
65 “finger poke” needles
318 complete blood counts (CBC)
66 blood cultures

229 inpatient days/nights (6 different hospitals)
212 outpatient clinic visits
173 nights on IV hydration at home
8 return flights to New York

32 blood transfusions
49 platelet transfusions

13 doses of cyclophosphamide
8 doses of topotecan
8 doses of etoposide
8 doses of cisplatin
5 doses of vincristine
9 doses of mesna
5 doses of doxorubicin
3 doses of melphalan
5 doses of carboplatin
9 doses of irinotecan
4 doses of rituximab
163 doses of temozolomide
95 injections of filgrastim
64 injections of sargramostim
20 infusions of ch14.18
3 infusions of 8h9
20 infusions of 3f8
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
120 doses of morphine
214 doses of gabapentin
425 doses of Tylenol
40 doses of codeine
51 doses of ibuprofen
2 doses of fentanyl
2 doses of Demerol

31 doses of ceftriaxone
45 doses of piperacillin
6 doses of Septra
19 doses of gentamicin
16 doses of ceftazadime
50 doses of vancomycin
28 doses of nystatin
125 doses of dapsone
148 doses of ciprofloxacin
20 doses of Tamiflu
145 doses of piperacillin/tazobactam
11 doses of meropenem
5 doses of pentamidine
94 doses of acyclovir
5 doses of fluconazole
19 doses of caspofungin
302 doses of penicillin
5 doses of cefazolin
8 doses of cefalexin
55 doses of cefixime
42 doses of cefepime
61 doses of cloxacillin
25 doses of cefuroxime axetil (ceftin)
44 doses of amoxicillin

1,310 doses of ondansetron
235 doses of Gravol
175 doses of dexamethasone
162 doses of Ativan
195 doses of Benadryl
189 doses of ranitidine
108 doses of hydroxyzine
8 doses of hydrocortisone
26 doses of loratadine
21 doses of famotidine
22 doses of nifedipine
44 doses of amlodipine
202 doses of enalapril
51 doses of spironolactone
2 doses of hydralazine

3,462 doses of metoclopramide
2,957 doses of calcium carbonate
902 doses of vitamin D
654 doses of domperidone
521 doses of lansoprazole
126 doses of omeprazole
41 doses of pantoprazole
54 doses of Lasix
157 doses of polyethylene glycol 3350
159 doses of lactulose
85 doses of loperamide
35 doses of Lugols solution
8 doses of mannitol
50 doses of Cytomel
48 doses of potassium iodide
4 doses of Celebrex
22 doses of levalbuterol
18 doses of cheratussin

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 grade 2.  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.

You can look at your own life through the numbers that you accumulate.  What story do your numbers tell?

 

 

If you are interested in supporting a pediatric cancer organization in Canada, please consider one of the following:
•    Childhood Cancer Canada
•    Sears National Kids Cancer Ride
•    Camp Ooch

 

This article was in part written by Antonia Palmer.  Thank you to Lee Ferguson for editing this article.

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Comments

6 people have left a comment so far.

  1. Karen Haugland

    We kept a similar book, a binder, documenting treatments, appts, discharge notes, blood work results, etc.
    to the layperson it’s a bunch of numbers and meds that you can barely pronounce. To a Cancer parent various things jump off the page:
    Vincristine and Gentamyacin: does Nate suffer hearing loss?
    Immunotherapy?: Josh was 80 days too early to receive this therapy in BC, and still, 6 years later I worry if those 80 days will cost us.
    Blood transfusions and Platelets?: those numbers actually look low to me considering Josh’s numbers were slightly higher after just one year of treatment (but he was older/bigger requiring more blood products possibly?)
    Heparin Flush: does the layperson know what this entails? I recall my fear when the oncology nurse showed my husband and I the procedure for this.
    Sterilize the work surface, wipe the stainless steel tray with alcohol top and bottom, place on surface, oops forgot to wash my hands, 2min scrub, dry with paper towel, touch nothing, repeat above, wash hands, layout supplies, have Josh sit, wash hands again, clean tubes with alcohol, clean heparin vial with alcohol, fill injection syringe with heparin, unlock end of central line, attach syringe, push in heparin, lock, remove syringe and repeat on the other side. Check status of dressing. (Dressing replacement is whole other process), send Josh off to play, toss garbage, needles in sharps container, wipe everything down with alcohol again before returning to the giant Rubbermaid tub that stored our supplies, inventory, make note of what needs to be picked up on the next clinic day). (And that’s from memory-six years old, I’m sure to have missed a step or two).
    Like the numbers of kids with cancer, the numbers behind each treatment, medicine etc. have a story.

  2. Parker Moss

    What an incredible achievement… both medically, and organisationally. I’ve never kept records like this… kind of wish I had. Thanks!

  3. Christine Ferguson

    I am Krystianna’s Granny. I am not sure if our paths have crossed. She was in treatment on and off for 8 years at Sick Kids Toronto. I cannot say how grateful I am for living near Sick Kidsa and for having OHIP. My daughter never kept a record of the treatments but I think they were about the same as Nate’s.We do have a picture of Krystianna with her “bravery” beads which attests to how much she had. Thank you for the work you did and the marvelous article you wrote.

  4. bill greenberg

    …and hundred and thousands of hugs and loving wishes from others. what an awesome story. may the progress continue.

  5. Carrie Nail

    Thank you for your story, and I’m so grateful that Nate has survived. Your record may one day be a source of hope and information for others. My granddaughter was diagnosed with Stage IV neuroblastoma at the age of 8. She was such a brave fighter, but lost her battle two years later. My prayer is that through research the survival rate will be greater. God bless everyone undergoing treatments and their doctors and families who support them.

  6. Agnieszka Zubel

    Amazing story, I wish I was more organised and kept all our records like you.
    We are still on the treatment as our Maya relapsed.
    God bless all children suffering cancer xx

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