Last year our 2 yr old daughter Clara was diagnosed with high risk, stage 4 neuroblastoma. After two surgeries, 30 radiation treatments and 6 rounds of chemotherapy over 5 months we finally left the hospital located 2 hours from our home. A number of deeply personal spiritual experiences deterred us from seeking further experimental treatment and we brought Clara home against the advice of her oncologist who said she would be gone by March. Most important to us was spending quality time with Clara and our other 4 children, making lasting memories and keeping Clara comfortable. For 7 months Clara lived the dream life of a two year old, symptom free and extremely happy. We moved to a new house on almost an acre with a childhood wonderland in the back yard. The Make-a-Wish foundation installed an in-ground trampoline that she used for hours on end.
We were just about to the point where we thought Clara had cancer beat when she started having unexplained pain in different parts of her body a few weeks ago. Every cough, every headache, every fever since October have taken our breath away as we cautiously navigated post-treatment life. This time, though, our fears were realized. Clara has two lesions on her spine and another on her pelvic bone that are growing. She is beyond the reach of any non-experimental treatment. I got the confirming phone call while chaperoning a stake laurel cycling trip a few hours from our home as part of my high council assignment. During the 3 hour drive home, I cried almost continuously, but also had the confirming witness that everything would work out for our good.
The other children are taking it pretty well, as we've known this is a possibility for quite a while now. But how do you explain death to a 3 year old? Any ideas? Anytime we try to talk to Clara about it, she gets angry. She obviously knows there is something wrong and has bouts of fear that we try to soothe, but what can we do to ease her emotional pain? Hospice is coming this morning to help us with her and to prepare for end-of-life treatment, but it's not really the physical pain that breaks my heart. I'm desperate for suggestions . . .
