The Roller Coaster Between Resolve and Despair

Ok, Wednesday and Thursday we were pretty numb, but I think Cindy and I have moved beyond the shock, anger and disappointment stage to try to focus on next steps. We seem to be taking turns between resolve that this will work out and despair for what happens if it doesn't.

In terms of Sammi’s situation, we're still a bit in the dark about the possible second tumor and what it's implications might be, and have run around the track on a few different chemo protocols over the last 72 hours, but we're essentially back to our oncologist’s initial recommendation: get Sammi on the TPCV protocol as soon as possible, then ruthlessly research other alternatives for the next 4-6 weeks so we have a better handle on our next moves if she doesn't tolerate the TPCV well, or if it doesn't arrest the tumors growth. While there are several alternatives available to us beyond TPCV, there’s not a lot of good data available about any of them, and there are as many opinions are there are doctors in the room at any given moment.

As we get back into research mode, everywhere we turn we hear terrible stories about toxic side effects, treatments that don’t work and families with kids that have lost or are losing their children (slowly) to this disease. The Yahoo message boards are a decent source of (anecdotal) information and leads from other parents with similarly situated children, but every morsel of useful data comes with loads of sad stories attached. I had a call with a researcher last week just after Sammi’s scan, and when asked why he is interested in research on JPAs he said “because I think it’s harder to watch kids die slowly than with other tumor types that kill more quickly.” Is that what’s happening to my daughter, or is this recent setback just another step in the management of what will become something akin to a chronic disease? It’s hard to stay centered in the face of these kinds of stories, but they’re impossible to avoid in the circles we now travel.

In terms of highlights, on Saturday morning, we went to the BU "5k for JPA" fundraiser. This event was conceived by my mother, Linda, and organized by 2 phenomenally energetic sophomores at BU. They ended up getting over 250 kids out for a 5k run and raised over $26,000 for JPA research. We were there with our friends the Ragnoni’s (whose son TJ also has a JPA) and it was inspiring to see and, other than dropping and breaking my digital camera, it was a great event. Linda has a notion that she can use this as a template to rollout to college campuses around the country to widen our fundraising net for research. Go, Linda, go.

Our kids remain blissfully ignorant of the implications of what’s going on and it’s actually uplifting to see them continue with life as normal. Other than a few questions from Samantha about what the new protocol entails, everyone seems to be taking the news in stride so far. Yesterday afternoon, when we came back from the BU event, the girls wanted to play out in the yard – I found that I had to force myself to stay “in the moment” with them, but rallied to have a couple of great hours playing jump rope, basketball, visiting the neighbor’s dog, playing with the twins next door, etc. Later in the afternoon, the three girls broke into a spontaneous “pig-pile” frenzy on our kitchen floor… it was completely precious (and would have been a great picture but for the aforementioned camera dropping episode).

Tonight is the beginning of Yom Kippur, the Jewish day of atonement. It is said that "On Rosh Hashanah it is written and on Yom Kippur it is sealed,” the day on which G-d inscribes in the book of life ones fate for the coming year. May G-d inscribe only good things for Samantha, she deserves it. Regardless of your religion, please keep Samantha in your thoughts and prayers.

Best wishes from our family to yours,
AJ