Sophie’s tumor histology reports came back and her official diagnosis is medulloblastoma. All medulloblastomas are grade 4 which indicates it is malignant and aggressive. Though the 5 year survival prognosis is around 67%, kids under 3 are considered infants and have poorer outcomes- usually 30-50% survival after 5 years. We are still investigating why this is so, and what we can do about it. Unfortunately, we have to wait until Sophie passes through a critical healing window from the brain surgery before she can start chemo. In the meantime, her function continues to deteriorate. We’re back to using some of our infant gear like carrier packs (the Ergo), bibs and bath seats. She still tries to do her old tricks like jumping and walking and climbing but now needs a lot of assistance and watching out very closely for her safety. It’s so hard for me to see this decline but luckily Sophie remains in mostly high spirits, giggling, joking and chatting just like her usual self. 🙂
Since arriving home we’ve been bombarded with new info, more tests, blood draws, paperwork, research to follow, choices to make, appts to organize, etc etc. Helping someone through cancer treatment is a full time job. We head up to DC on Tuesday to get a port-a-cath surgically placed in one of her main veins. This will allow medication delivery, chemo, and blood draws to be done without needles and pricks. Then while we are up there we start treatment. The first 4 days are oral medications and can be taken at home and the next 4 days are IV medications during which she will be admitted to the hospital. So we will be there over Christmas. Luckily, both kids are young enough to not know which day is the real Christmas so we can celebrate the weekend before. As long as the hospital doesn’t make a big hullabaloo over it being a holiday, they’ll be none the wiser.
With all the things we are now doing that keep us busy and preoccupied and trying to make the kids’ lives as normal and happy as possible, I feel like I haven’t really even had a chance to process what’s going on and the big challenges ahead of us. I feel like I’ve only had a chance to cry for like 2 minutes before I need to pull it together for one reason or another and I want to spend days on end crying. Also, it seems there are some heavy risks and side-effects associated with various treatments that we need to look into. Even with a cancer cure, there’s a possibility Sophie will be mentally and physically disabled (or one or the other) and possibly dependent on us for the rest of her life. That’s all scary to think about but as long as she’s cured that’s fine with me. The thing that worries me the most is that her personality or disposition will somehow change. Sophie’s feisty, adorable, playfulness is what I love the most about her.
Here’s Sophie reading a book about BALLS while wearing her BALL pants (she loves balls): And here she is considering all her dining options while the steroids she’s on make her as insatiable as the Very Hungry Caterpillar: Night-Night, Junie: