Marathon #20 – 26.2 for Sarah
Sarah’s story: (Heather’s awesome daughter)
For as long as we can remember Sarah has had severe stomach aches and terrible constipation. Her doctor used to tell us that if she ate more vegetables and fruits that it would all go away. She’s always been on the small side, but we just thought it was because she has always been a very picky eater (pasta with butter and parmesan cheese is her staple!)
In December of 2016 we noticed that her coloring was off, looking extremely pale, but we didn’t think much of it, just chalked it up to being the winter and kids weren’t getting as much sun as they do the rest of the year. Then, in January of 2017, the pain in her stomach soared to an ultimate high, causing her to wake up in excruciating pain, every night for a week. At that point we decided that we weren’t going to take any chances. I called her pediatrician and told him that I wanted Sarah to be seen by a specialist as soon as possible. They gave me the number of the Pediatric Gastroenterology Department at UMass Medical Center and I called that day. Sarah was really lucky! She was seen the next day and then was scheduled for a colonoscopy within days of that appointment. When Dr. Candela (the most incredible pediatric GI that anyone could ever ask for) came out of the colonoscopy I knew it was bad news. Sarah was immediately diagnosed with Crohn’s. The inflammation in her ilium was so great that there was only a space the size of a pin head for waste to pass through. The good news was that all this happened within a month and Sarah was immediately put on a plan. Prednisone and tapers for the inflammation, ex-lax to clear out her digestive system and Pentasa for the Crohn’s. Our kitchen counters looked like a drugstore with all her medications. The good news is that her stomach aches were gone; the bad news is that she wasn’t responding to the medicine.
It’s been a year and a half and we are still trying to get Sarah into normal levels for her bloodwork. But in that year and a half Sarah has gained so much (including a little weight)! She met all of her TC family, as she was asked to be the honored hero for TCNE, and even more incredible is that this summer she was able to attend Camp Oasis in New York. She had the most amazing week, meeting girls and boys her age, who were going through the same things that she was going through. She finally felt “normal.” She was right at home, as everyone had to take one type of medicine or another, and there were older kids and councilors that had the it and were going through what she was, who she could look up to and know that it really is going to be ok!
Our fight for Sarah isn’t over as we are still looking for her “magic cocktail” to get into remission, but the love and support that she gets from all her TC and Camp Oasis friends and families is more than we could have ever hoped for! Thank you Marc for all that you are doing, because one day, we know that there will be a cure and Sarah will have all of this as a distant memory!
Running 26.2 for Sarah!
Marathon 20 – Recap