Summer has now finished nine of 28 proton radiation treatments. Hard to believe we're basically a third of the way done - it's going very fast!
This last week was a little crazy. In addition to her morning radiation schedule, we had a lot of afternoon appointments, which really messes with naptime and makes for a grumpy kid. On top of it, I came down with a cold. Thankfully, Summer has managed to avoid getting it from me.
On Tuesday, Summer had the Boston equivalent of a HASTE MRI (the quick one they do without anesthesia). We made it through okay, but it didn't go as smoothly as the ones she's had over at Seattle Children's. MGH is not a children-only hospital, and the nurse admitted they don't have much experience doing this type of MRI for young children, although they'd like to do them more often to avoid giving anesthesia when it's really not necessary. Hopefully the pointers we gave them will help in the future, but part of it is that they just don't have everything they need to get it done efficiently for little kids. Without the forehead strap and pads to hold her head still, they had to run the MRI sequence 4 or 5 times to get good images for Summer. She has another one next week, so we'll see if that goes any easier.
We met with Dr Jones, a neurologist, on Wednesday afternoon. A neurology appointment comes standard with radiation, mainly to connect us with a doctor here in case we start seeing any problems. Sometimes, the neurologist will want to follow the child with visits throughout the radiation process, but Dr Jones didn't see anything in Summer that she thought made frequent visits necessary.
I was especially excited about this appointment because it was our chance to finally get a verdict on weaning Summer off of Keppra, the seizure medication she's been on preventatively since her August craniotomy. We've been ready to wean her off of it for some time, but kept having issues connecting with the neurologist in Seattle. We had an appointment, and then the Boston schedule got changed and we had to cancel it but couldn't get another one in before we left.
Keppra makes kids irritable and amplifies reactions, so we're anxious to get her off of it. It will take 8 weeks to wean completely because weaning too fast can actually cause seizures, but Summer had her first reduced dose on Thursday.
Dr Jones also asked if I had seen the scans from Tuesday. I hadn't yet, assuming we would hear about them after Wednesday's tumor board meeting, so she pulled them up to take a look. I could tell right away there is a little bubble of cyst that is re-accumulating. This is not abnormal - in fact, it's very common for cysts to get bigger during radiation. What's frustrating is that it's not draining with the shunt.
Dr Jones connected us with the pediatric neurosurgeons here at MGH and we have an appointment with Dr Butler this coming Tuesday afternoon to talk about increasing the flow of the shunt to see if it's just accumulating faster than the shunt is draining. The other possibility though, is that now that the cyst is collapsed, this part that is re-accumulating may not be accessible to the shunt catheter.
While that would be unfortunate, it's not really a problem yet. Dr MacDonald (the radiologist) has adjusted Summer's radiation treatment plan just slightly to accomodate the increase in cyst volume. It's such a small increase that she told us some might argue she didn't need to adjust the plan at all, but she would rather be on the safe side. She also sent copies of the scans over to Dr Browd (Summer's neurosurgeon in Seattle who placed the shunt) to see what he thinks about adjusting the flow of the shunt. We'll have more scans throughout the radiation treatment and can continue to adjust the plan as needed.
On Thursday afternoon, Summer had an endocrinology appointment. They had drawn some blood for labs during Summer's first radiation session, so we reviewed the results. Everything looks good, except her thyroid levels are a little off again. Summer has slight hypothyroidism and has been on medication for that since November, but these labs show that her dose was a little too high. They prescribed new pills at a reduced dose and will check her levels again in four weeks to see if the new dose is right.
Her radiation treatments have been a struggle this week. Summer was having waking up very quickly from the anesthesia, but had a very hard time shaking the effects of it. Most days, she would need about two hours before she was back to normal. In those two hours, she was extremely whiny (to the point where sentences were coming out as one big, completely unintelligible whine), irritable, and just plain grouchy.
By Thursday, I was actually beginning to understand the whiny sentences she'd been saying all week. It's like learning a new language and being put into submersion school two hours a day! Every day when we walk into the radiation room, they have a stuffed turtle that to Funky Town when you squeeze it's foot. I didn't realize Summer loved that turtle so much, but every day after waking up from anesthesia, she asks to go see the dancing turtle again. Of course, we can't - someone else is getting treatment by then - so I tell her he's taking a nap and we can't go wake him up, and she seems okay with that.
On Friday, we could really see how comfortable Summer is becoming with the whole process. She was walking around the prep/recovery room and playing with the nurses, and she walked herself all the way down to the radiation room when it was time for treatment.
That day, I asked them to allow me back to the recovery room well before she wakes up to see if having me there as she's waking up would make any difference in her behavior afterward. Normally, they call me when she's stirring, and by the time I get back there she's already awake and in whiny mode. I'm not sure whether it was me being there that helped, because she also woke up a bit more slowly, but she had a much better time on Friday. She was pleasant and talking in actual words.
Summer continues to be very sensitive about her "tubey," and often tells me "Don't touch my tubey, Mom. It's dangerous." Changing clothes is an even bigger battle than usual during the week when tubey is in. I've been trying to get a picture of it to send to Jason since day one of treatment, but she would never let me. UNTIL she was procrastinating at bedtime one day. Then she asked me to come take a picture of it with my phone. This is tubey:
While the weather (we had lots more snow this week), my cold and general grouchiness from skipping naps have kept us from going out much this week, we've kept busy in our apartment.
We got a couple of wonderful care packages from friends, the Kok and Drake families, which Summer thoroughly enjoyed.
Watercolor paints, a beautiful Summer necklace and stickers from Lauren, Ben, Val and Kevin Kok:
A Care Bear book, coloring book, new jammies and candy from Logan, Claire, Casie and Aaron Drake:
On Wednesday evening, we had a get together with some of the other families at Christopher's Haven so they could get some parent/family input on ideas they have for new things to do this year. It was great to get to talk to some of the other parents I hadn't had the chance to meet. There are a couple of older kids here for radiation, and it was interesting to hear about how they're feeling since Summer can't always tell me. Both of the older kids are pretty exhausted most days, and Summer definitely isn't, but they're a bit farther along in treatment, so some fatigue may be in our future.
On Thursday evening, a charity called Our Space came to the Christopher's Haven loft and put on an arts & crafts night for the kids. We had a blast! Summer made a lot of great art pieces - at least one will definitely be going on the wall when we get home (the purple star wand is my favorite) - and had a great time playing with the other kids close to her age. They ended the night with races back and forth down the hallway. All us grown-ups had sore cheeks from laughing so hard all night!
This was a genius idea - foam board that is sticky on one side, so no glue is necessary. Makes for a much neater art project!
My favorite piece of Summer's:
Making a card for Logan and Claire:
Playing trains with Spencer:
This is Spencer (3 years old):
Summer "hiding" and Spencer finding her during a great game of hide-and-seek:
Summer, Spencer and Kamilah (2 months younger than Summer) racing in the hallway:
The finished products:
I'm feeling much better now, and our snow gear has all arrived (we shipped some separately), so we'll probably go out and play in the snow sometime this weekend. Summer has been very anxious to build a snowman!