NIH Visit
June 2015—Summary
Another
NIH visit done! Here’s an overview
of the last 3 days:
The Wednesday
afternoon we arrived the Children’s Inn had some special activities in store
for us. Jane got to participate in a
play performed by Only Make Believe. Only Make Believe is a non-profit organization that creates and
performs interactive theatre for children in hospitals and care facilities. We had seen them perform last summer when
were at NIH, and this show proved equally entertaining!
Later on
we made home-made play dough and indoor snow.
Jane also became fast friends with a little 9 year old girl from Austin
who was visiting NIH for evaluation of a rare skin disorder.
~~~
 |
| Jane at her photography appointment. |
On Thursday—the first day of our clinical appointments—we checked into
the hospital 8:45am and out of the hospital 3:45pm. Whew! Jane handled it with grace and was in good spirits.
We
showed our sonographer Jane's diorama of the Lego ultrasound and we showed our
MR radiologist Jane’s Lego MRI suite—both were duly impressed.
We shared and learned some
new jokes. Jane had fun tricking various
people with, “Mississippi is a long word.
How do you spell it?” [Answer: “I-T!”] Jane was tricked in turn by a
nurse who thought she looked bored. He
said, “I can prove you’re excited!
Knock-knock!”
“Who’s there?”
“Woo.”
“Woo who?”
“See! I told you you were excited!” (Jane liked that.)
We also shared a joke our
sitter, Brittany, had taught us: “How
many tickles does it take to make an octopus laugh?” [Answer:
“Ten-tickles!”]
When we arrived back at the Inn after our long day I was puzzling over
how I could go about getting Jane's medication diaries back to the hospital (I
forgot them that morning) without dragging Jane along with me, when two of the
Children's Inn staff offered to watch kids in the playroom in order to give
parents an hour's break. I love that place
sometimes.
~~~
Friday morning I did not handle things as gracefully as Jane did. I did a full-on Momma Bear when the
anesthesia team mistakenly thought that Jane was having a 3 hour full-body MRI
(instead of the 90 minute face and orbits scan that was ordered—there’s a big difference between a 90 minute scan and
a 3 hour scan when you're under anesthesia) and didn’t listen to me when I told
them I didn’t think it was right. I was
so angry! I felt like I was watching one
of those movies hospitals show their staff illustrating the importance of
communication between members of the care team in order to avoid medical
mistakes. I can be ugly when it comes to
health care providers who don’t listen (especially when I haven’t had coffee
yet!) This is why we do pre-procedure
time-outs, people!!
We checked into hospital 7:25am and out of hospital 2:55pm with only a
few bumps along the way, but the upshot of the day—a STABLE tumor!
We met with Jane’s neuro-oncologist, Dr. Brigitte
Widemann, who was pleased with the results. She said in her patients
taking AZD6244 it has been very typical to see a plateau of tumor volume after
about a 25% decrease (Jane’s was 24%). The
fact that Jane's tumor is still responding in this typical fashion, despite Jane
being on a lower dose of the medication, is even more encouraging. Dr. Widemann
recommended staying at the lower dose, and reassessing again in 6 months.
I was disappointed at first that we hadn't seen any further decrease in the size of Jane's tumor, but I am relieved that Dr. Widemann was so pleased with the results.
I’m going to show one more set of
pictures—it’s a bit confusing at first if you are not used to looking at MRIs, but
what follows is a side-by-side images of the same slice of Jane’s tumor from
2/2014 compared with now. Tumor is the
big white blob on the left of the image.
You can see in some spots where it appears to have just melted! (You can also see from these images why her
tumor can’t be surgically removed—it wraps around everything.)
Friday afternoon we spent back at the Inn chillin' with some
DanDTM videos (Minecraft :/) and with Jane drinking an Oreo
milkshake. (Mmmm!) She was still feeling sleepy from her
anesthesia, but said, "I'm just going to drink my shake to get my energy
back." Over the course of three
days we burned through several volumes of Jane’s new favorite chapter book
series—The Littles. (One of my childhood
favorites, too.)
~~~
Here we are at the airport, awaiting our
flight home. I'm looking pretty worn--definitely think these
trips age me!
