Update via Cohen's mother (March 31, 2017):
Well, after busy 3 days I am finally getting a chance to sit down and write an update. Tuesday afternoon Cohen rang the end of chemo bell!!! 14 months to the day, he completed his treatment.
131 doses of chemo (7 different drugs)
2 drugs given with chemos to minimize damage to his heart, kidneys, and bladder.... damage that could show up for years to come
24 radiation treatments
4 surgeries
3 NG tube placements
1 G Tube placement
100s (probably in the 500 range) of pokes, sticks and blood draws, not including the
112-116 Neupogen shots given by us to him at home
34 - 38 times being put under sedation
3 ureter catheterizations
73 overnight stays in the hospital (i still need to add them up)
15 prescriptions, often up to 8 different drugs a day, around the clock
15,000 miles, not counting Hurley's trips from work to the hospital and back.
countless vomiting and nausea
countless balancing of diahhrea vs. constipation
countless antibiotics for every non-chemo hospital admission
countless prayers, tears, hugs and cups of Starbucks coffee
countless scans to come, Lord willing.
WHAT a YEAR. and all of the above is what most, if not all, rhabdo cancer kids will endure. And Cohen has been very fortunate in the number of overnight stays he accumulated.
I will say this. Cohen's form of cancer is an aggressive one and has a high rate of relapse. It will take 5 years of being cancer free to be considered a survivor. In the meantime, he will have scans every 3 months to watch for any signs of relapse, or look for any secondary cancer. In the rest of the meantime, we will be watching for any health issues to crop up due to all of the chemo and radiation he has had, and getting him into therapy, to help him process all the medical trauma in a healthy way.
All of this to say, while we have been repeatedly congratulated for this being "over", and we ARE beyond over-joyed to have made it this far, for us it is not over... it is more that we move forward into yet another new "normal", another new unknown we will discover day by day as we move through it.
We are hopeful, and nervous at the same time. We have had a taste of non-cancer life the last week and a half, and it is so very beautiful, so very precious, so very sacred.
I pray desperately that God has brought us this far to keep taking us farther. I pray that His will is for Cohen to stay NED for now and for always. To beat rhabdo once and for all, to experience His healing THIS side of heaven. I ask that you pray that with us. It is you who have prayed us here, and we know and will never forget that.
My aunt gave me some wise advice she heard: "You can't live in worry about what may happen in the future. If you do, and it happens, then you have to live it twice."
I am weaving those words around my heart. We don't know what the future holds, but today, Cohen is cancer-free. Today, Cohen is enjoying his newfound freedom from the cancer-world. Today, we are a family of 5, alive and breathing in the dusty, sunny Georgia air. So today, we will celebrate. ♥
And here are some pictures of us doing just that :).
https://youtu.be/OYGhScXgfoA
Original Post:
Cohen (Coco) is a sweet but stubborn, happy but strong-willed, playful child. He was diagnosed with stage 4 Embryonal Rhabdomyosarcoma February 2, 2016. He has begun treatment with chemotherapy, with more chemo, radiation, and surgery to come. Cohen is a fighter, sometimes more than is good for him, but we are grateful for his tenacity at such a time as this. Please pray for Coco, our family, and the doctors and nurses watching over him as he endures his treatments.
Updates: https://www.facebook.com/prayersforourcoco/
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