NIH Visit Recap:
Just arrived home from Jane’s restaging visit to NIH, before starting cycle 29 of her experimental therapy. Overall, a good visit. I won’t keep you in suspense—Jane’s tumor appears “stable”, though with some caveats…
We arrived at the Children’s Inn at NIH on Sunday afternoon. We were fortunate to be assigned one of the renovated rooms on the ground floor, so had large windows looking out at the garden, and even our own small patio. We saw lots of wildlife! A bunny, several deer, and even a mother robin on her nest under our eaves!
The Family Dinner provided by the Inn that night was perfect for Jane: a pasta bar! Jane is a notoriously picky eater away from home (actually, at home, too—not sure if it is bad parenting or if her medication affects her sense of taste more than we thought), so much so that I pack a couple of servings of microwave mac and cheese in my bag to serve her in case she doesn’t like the available options at the Inn. That night we got to pick from various types of pasta, then could pick from different sauces and toppings (or plain butter, in Jane's case). Girl Scout cookies for dessert :) I enjoyed getting reacquainted with two moms—one from Spain and one from Venezuela—who I’d met on previous visits to NIH.
Back in our room after dinner we read a few chapters from Harry Potter before bed. We’ve been reading the third book (The Prisoner of Azkaban) together, but we forgot to bring our copy with us. Luckily, we found a copy in the library at the Children’s Inn <3
Monday morning at breakfast I saw a young boy accompanied by a woman wearing a shirt reading “I know a fighter”. I recognized the shirt as one from a campaign by the Children’s Tumor Foundation! (I have one myself!)
It turns out the boy has NF, too, and had just started the same experimental medication as Jane four months ago. They were returning to NIH from California for their first restaging since enrolling in the trial. It is always good to meet other families that are going through an experience similar to ours.
Jane and I spent the entire day at the hospital, and truly didn’t have a moment’s rest from 8am until after 5pm. Thankfully, her blood-work, physical exam, eye exam, EKG, and echocardiogram were all normal. The NIH appointment I like the best is Photography. I get to snap along with my phone while the photographer documents the appearance of Jane’s tumor over time. Two of my favorites:
Jane managed another non-sedated MRI scan, though I she did fidget quite a bit this time during the exam, despite our best efforts. The results:
So, the official word is "stable". The graph shows a slight increase in size (10mL) but the radiologist felt that this was due to motion. Our care team is still letting us wait 6 months until we have to return/restage. We discussed two things:
1) Giving Jane a small dose of Ativan or similar to relax her but not put her to sleep for the scan.
2) Whether to stay with the same dose of AZD6244 or increase it. I favored staying with the same dose since Jane is tolerating it so well and since the team thought the tumor was "stable". Our main doctor, pediatric neuro-oncologist Dr. Brigitte Widemann, added that, since Jane has already had more than a 30% reduction, she wasn't sure how much more benefit Jane would get. (The best response they've seen is 50% reduction, but most patients have had 30% or less, even on higher doses.) Also, the next higher dose option would be twice Jane’s current dose (not a trivial increase).
The potential argument in favor of increasing the dose is they're not sure if Jane would have the same beneficial response to a higher dose if the tumor truly starts growing again (concern for "resistance").
Anyway, still good news, I think. I would have liked "smaller", but I'll take it...
The Family Dinner that night at the Inn had a Disney/Movies theme, complete with a “photo booth” with costumes and accessories.
|The dinner settings|
|Jane was not shy at the photo booth...|
We had spaghetti and meatballs for dinner, then make-your-own sundaes for dessert. No wonder Jane considers these "vacations"!
Now it is Helen’s turn to be featured :)
Helen’s soccer team played in a local invitational tournament this weekend. I’ve attended almost every game she’s played this season (for the last four seasons, for that matter) but I had to miss the semi-finals and finals of this tournament since Jane and I were in Bethesda. Wouldn’t you know they were the most exciting games of the season! First, during the semi-final game, Helen’s team was down 1-0 with a couple of minutes to go and Helen scored the tying goal. This is particularly special since Helen plays defense! Spectators called it “unbelievable”—she scored from far back field, up and over the head of the goalie :)
Then Helen’s team went on to win the final against an undefeated team! It couldn’t have happened to a nicer group of girls. Everyone on the team has worked hard and played so well together this year.
|The Madison eighth-graders|
|Helen with her award :)|