For context, I implore everyone here to donate and I will again even tho I "won". From my social media feeds:
As September is
#childrenscancerawareness month, I would like to share something here. And a little bit of context -
Americans spend similar amounts on Starbucks in 3 days that the US government spends on children's cancer research in an entire year.
Our daughter, Sarah, 17, just over 3 years ago went for surgery to remove and biopsy her right kidney that had a large tumor on it. Her oncologist expected it to be a reoccurrence of the Ewing's Sarcoma she had as a 2-3 year old. Ewing's was super rare for that age group (3 in 10 million toddlers). Instead her diagnosis was to very rare, very aggressive children's sarcoma called Desmoplastic Round Small Cell Tumors (DSRCT) last year. This cancer has only been diagnosed in a little more than 200 people since 1989 when it was discovered.
#cancersucks #childrenscancersucksmore
Imagine being given a 2nd diagnosis that is near impossible for your age and together between both cancers statistically not possible (something like 3 in 8,000,000,000,000).
How did she respond to this diagnosis? "Dad, I knew I was going to get cancer again 2 years ago and I'm ready to fight it." And she fought with tremendous spirit and grace. She was homecoming queen at her high school yet didn't want to win by a pity vote (instead they voted her in on her courage). She was the first ever with metastatic DSRCT, that was able to receive clean scans through chemo even though there is no real chemo program for DSRCT. It was a miracle. She then changed her major from music to pre-biology and worked a semester as a college freshmen in her oncologist's research laboratory while having clean scans.
But children's cancers don't fight fair! He 2nd chemo program was cut short due to the damage the chemicals were causing her lone working kidney. Then the spots where the tumors were gone showed something on scans again. And while the biopsies were negative at first, they finally showed something in early 2023. It was back and was very aggressive. Her body could not take any more chemo. And sadly, most chemo programs are 30+ years old in what's used. There have been a few changes in ratios and timings but little new advancement overall, especially with sarcomas that get a miniscule amount of even children's cancer research dollars that are available.
Sarah finally passed away on April 24th, 2023. We need to do better as a country and as a culture to fight these diseases. The number of children getting diagnosed with cancer is growing every year and very little research is getting done. Her oncologist called the day after she passed and said something along these lines, "I'm a very good scientist and researcher, but now it is personal for me and my lab!" They were able to use some of her memorial funds to work on a study that changes the chemo program for Ewing's Sarcoma. The first major breakthrough in 30 years.
We need more stories like this!!