Summer Claire: Run of Hope and almost done with Interferon!

We've had a busy couple of weeks since I last wrote, including several more Interferon treatments, an MRI and the Run of Hope, in addition to every-day things like a visit to the Children's Museum, a day-trip to the cabin and visits with family and friends.

We've had great treatment sessions, like the one I described in my last post, and not-so-great ones where Summer is a bit more uncomfortable. We're not sure what the difference is from one treatment to the next, but suspect it might have something to do with how quickly they draw the fluid out. They try to pace it, but there's a delicate balance between going so slowly that Summer gets impatient and squirmy (doesn't sound like a big deal, but when you have a needle sticking in your head, it is...), or going too quickly and causing a headache.

With each treatment, Summer's reaction had been increasingly mild. If she gets a fever at all, it's very slight and doesn't last long. She also hadn't been as sleepy the day following treatment as she had been initially. Sometimes, she doesn't seem to be fazed at all.

She has a lymph node behind her right ear that swells up after each treatment, her body's reaction to having a needle poked through her scalp. We've been assured that nothing inside her skull would be draining to that lymph node, so it isn't anything to worry about, and it has usually returned to normal size in time for the next treatment.

We did start to get concerned last Monday, when Summer suddenly started sleeping a lot more. She would sleep in until 10 or later on the days we didn't have treatment, would be ready for a nap earlier than usual, and would nap much longer than usual. This sleep pattern was similar to what we saw before the tumor was discovered initially.

We also felt like something was "off" with her eyes. We couldn't confidently say what it was that seemed wrong, but just that something didn't seem quite right. We brought these concerns up to Cory Hoeppner, a nurse practitioner who has administered some of Summer's Interferon treatments, and she had a couple of possibly explanations.

With treatments like this one, the tumor cells get really agitated and inflamed before they start to die off. Summer's symptoms could have been because the tumor cells were really inflamed, causing additional pressure in her brain. Or, it could be that the tumor cells had already died off, causing a rapid decrease in pressure in her brain that her body would also treat like trauma. Of course, it could also be that the tumor mass or cyst had grown.

She agreed that it would be a good idea to get an MRI to see if we could determine what was going on, in case it was something that required intervention. There happened to be an MRI cancellation on Monday afternoon, so we quickly snatched up that spot and she cautioned us to have a low threshold for deciding to go to the ER.

Fortunately, we made it through the weekend without any increase in symptoms. Monday morning rolled around and, of course, Summer woke up on her own at 6am instead of sleeping in as she had been doing for the previous week. Figures.

The MRIs were running a little late, so we had a pretty cranky kid on our hands - she wasn't able to eat after 6:45am, and didn't go under anesthesia until about 2:45. The waiting was not fun, but the MRI itself went well.

Cory came in afterward and did the Interferon injection while Summer was still sleeping off the anesthesia. Summer twitched a little as she was withdrawing the fluid, so it must bother her some - more than just having people mess with her - but not enough to wake her up.

After the injection, Cory went to watch over the radiologists shoulders as they read the MRI images and prepared their report. She came back to let us know that everything looked great. The cyst was smaller - as we would expect, since they withdrew all of the fluid before the first injection - and the tumor mass hadn't changed.

The results didn't explain Summer's symptoms, but they reassured us that everything looked okay in there. That peace of mind was completely worth the trouble of another MRI, and I'm so glad that Cory was willing to order one based on our concerns.

We have two treatments left, one tomorrow morning and the final one on Monday afternoon. We - especially Summer - can't wait to be done with it! We're going to have to do something fun to celebrate.

Sunday morning was the Run of Hope. I really enjoyed being a part of this event and seeing people who have been where we are. It's unfortunate that anyone else has ever had to go through this, but reassuring to know we're not the only ones.

We'd like to give a huge thank you to all of you who helped us raise $5,500 for the Run of Hope! In total, over $200,000 was raised for pediatric brain tumor research. Here are a few pictures from the event.