Our little Violet Ciel is 2.5 yrs old, she loves attention from her older siblings (and everyone else) as well as running, jumping, and climbing outside. She loves to paint and is a very animated and outgoing girl.
Violet was diagnosed with a type 4 Sacrococcygeal Teratoma when she was 11 months old. Her symptoms started months before, but she was repeatedly sent home by her GP. I eventually took her to the A&E in Temple Street where she was immediately diagnosed and transferred to Crumlin. By this time she had stage 4 cancer and the tumor was the size of a melon, it was metastatic in her lungs and liver and had done a lot of damage. She immediately started chemotherapy (6 rounds) and afterwards a resection surgery, her Hickmanline was removed and we celebrated. Only to learn that this had not worked, the tumor was growing back very quickly.
She started another chemo treatment plan, on the first round her body did not tolerate one of the chemo drugs and she ended up in ICU, her body worked very hard to recover from this, the plan was readjusted and she had 5 more rounds along with another resection surgery. This did not work either.
From here she was meant to start high dose chemotherapy with stem cell rescue, but because of COVID-19 this was very risky, so instead she had another 6 rounds of chemo. These drugs worked at the beginning, but eventually the cancer caught on and started growing again. This was followed by an aggressive resection surgery that was not successful.
Next was high dose chemo with stem cell rescue, and following this was radiation. 28 rounds in Essen, Germany.
This all happened very quickly (within a week) and John was there to sort it ALL. Flights, accommodation, transport… absolutely every detail. All six of us moved to Germany for 6 weeks and I cannot stress enough how grateful we are for the Gavin Glynn Foundation. They lifted a big piece of the burden during a time when we couldn’t even think straight.
This was the end of Violet’s treatment, now we wait. Soon she will start school and be the little social butterfly she’s meant to be.
Our lives have been consumed with this for almost two years, and I can’t begin to describe the emotional roller coaster and exhaustion that comes with being in survival mode for so long. Thank you from the bottom of our hearts, we are eternally grateful to you