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Courtney’s Story
Site created on July 19, 2007
Courtney Marie Saunders "Spud"
May 12, 2001 - May 4, 2008
Courtney was a 6 1/2 year old with Stage 4, High Risk, N-MYC amplified, poor Shimada Histology, Neuroblastoma cancer. She was 2 1/2 when we started this Journey. We were at Disney on our first big family vacation it was December of 2003.
Her only symptoms were not wanting to walk and a low grade fever. We cut our vacation short by a week and drove home. We went to her pediatrician at the time, and got the virus speech, you know the one...it has to run it course she will be fine. After 3 weeks of repeated visits Courtney becoming lethargic and not urinating we fought to have her put inpatient for fluids and some sort of scan done.
The scan revealed a huge mass and we were in an ambulance on our way to Rochester with a critically ill child. This was 2 hours away, leaving our other daughter Halie to stay with friends and family without us for the first time. She was only 4 years old.
She was initially diagnosed on 1/23/04 at the University of Rochester NY. She has had 6 rounds of high dose chemo, stem cell transplant, 3 surgeries to remove the cancer that was wrapped around her aortic artery, throughout her abdomen, and in the L-4 of her spine. These surgeries were not successful. She also lost her right kidney due to a surgical nick of the ureter. She completed radiation to her spine, and entire abdomen. She then completed 6 rounds of Accutane.
Courtney spent 77 straight days in the transplant unit at Rochester. At one point during the transplant she had 3 very serious blood infections running through her body at the same time. You know the look that nurses give you when "they fear" she won't make it? I saw it in their eyes...I never want to see it again.
From January 2004 through December 2004 Courtney spent 197 days inpatient. Due to infections, drug reactions, c-diff, colitis, line infections, and her treatments. During this time when we did get her home she had a feeding tube (NG) which we ran feeds at night. We ran meds at home with pumps, changed dressing, flushed lines, gave meds around the clock and yes at one point ran TPN (IV nutrition). The most extreme was 24 medications plus TPN for a 24 hour period. We had to learn (as all parents with cancer kids do) how to be a nurse, doctor, parent, friend and advocate for your child.
During the time I spent with Courtney in the hospital Paul was at home taking care of Halie, working, kept the house running, and researching Courtney’s cancer and treatment options. By January 2005 we had already determined our next course of action if she ever relapsed, we always had a plan.
June of 2006 Courtney had her MIBG scan which was clear; we requested a PET scan as it was new technology at Rochester. This was going to be done in December 2006 her next scheduled scan time but due to an insurance pre-approval it was approved for August, Paul and I said lets just get it done instead of waiting so that we have a baseline for December. We got a phone call on 8/28/06 saying the PET scan showed active disease…she had relapsed.
We decided it was time to get her to Sloan where she has a successful surgery (13 hours) to remove the remaining tumor and a Gortex (javascript:CheckWord('Gortex');) graft was put on her right femoral (javascript:CheckWord('femeral');) artery. She also received interoperative (javascript:CheckWord('interoperative');) radiation. She then got more "high" dose chemo (javascript:CheckWord('chemo');). She has also finished her 6 rounds of Accutane (javascript:CheckWord('Accutane');) and completed additional radiation (javascript:CheckWord('radation');). At 6 years old she has had all the radiation her body can ever have. She completed 8 rounds of 3F8 antibodies and is HAMA positive (Dec 07).
Courtney has been NED "No Evidence of Disease" since January 2007, and the Journey continues...
It will have been seven years since I’ve posted about Courtney’s Journey . As a parent of a deceased child, you never forget or take one breathe that doesn’t include the reflection of the lost child. I will never forget nor will my family. However, what needs to happen is to stop blaming ourselves for decisions in the past and the ability to be gentle with ourselves.
You will always feel that unimaginable pain in your heart, the loss of a child. Its not your fault, you did your best, you researched, listened to doctors that you trusted. So, lets just stop and try to forgive ourselves for the “only and best decision we could make at the time”.
Please be gentle to yourselves as life has dealt you a hard blow that is something that you will never be able to understand but at the same and that is ok. It is. The new norm, which is so difficult. Please know that there wasn’t one thing you could have said or done to change the outcome.
I love all of you and will now start speaking again as there are many levels of grief, death, dealing, living and raising the hurting siblings that get left behind.
