Friday, October 29, 2010

Six months ago today...

It's hard to believe it was exactly six months ago that we found out Summer had a brain tumor and she was undergoing her first brain surgery. It's even harder to believe that I had to write 'first' brain surgery because she's had two in that six-month timeframe. Add a little chemo to top it about a whirlwind!

Six months sounds like a very short time, but it feels like ages. I can't even remember what it was like not to worry about a brain tumor and how it will affect all of us for the rest of our lives.

We've been confronted with that worry every day. Is she rubbing her eyes because her vision has changed or is she just tired? Is she cranky because she has a headache from the tumor growing or is she just being two? Is she peeing a lot because she's developed Diabetes Insipidus or is that just how much she drank today?

We know there will be more hard times ahead, so we've been doing our best to keep things light and have fun every day. Sometimes that means we strip her down and let her finger paint on herself and the kitchen floor. Other times it's french fries and milkshakes for dinner, or covering the bath tub with crayon scribbles almost every night.

In that six months, Summer has gone from being a baby to a kid. She is active and very opinionated, and such a strong little girl. She turned two, learned a million new words, got potty trained and played hard. She loves to help cook dinner or make birthday cakes in her play kitchen, run laps around the house, and paint. She doesn't seem to be fazed at all by this whole thing, and we are so thankful for that.

Here's a little taste of our dynamic baby big girl:

Wednesday, October 20, 2010

What's next?

Summer will have an MRI on November 3rd to see if the cyst has continued to grow. We'll see Dr. Browd a few hours later to get the results. We love the Wednesday morning MRIs because it's the same day as the Tumor Board meeting, so they can review her case the same day if something comes up on the scan.

In the meantime, we're having a nice break from hospital visits. Summer hasn't asked even once about going to the doctor, which surprises me a little since she talked about it quite a bit during treatment. She's getting to that age now where she actually internalizes the things we tell her - it's pretty amazing.

She does love her doctors kit, and frequently "checks" us with a stethoscope, looks for monkeys in our ears, takes our blood pressure and gives us "pokes" in the head. I haven't picked a Halloween costume for her yet, but maybe some tiny scrubs are in order.

So what do we do with all the free time now that we're not at the hospital three times a week? Potty training! Summer has been doing really well with it at home, and now we're working on going out without diapers too.

There's not much else to report. I'll post again after her MRI, unless something comes up between now and then!

Thursday, October 7, 2010

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.

"IN HONOR OF: me!"

The wagon came in quite handy - each of the four kids took a turn at some point.

Summer walked some of the way

break time!

Thanks to Sara Thornton for this finish-line photo
Yay Team Summer!

Summer got called up on stage to draw some raffle winners. I was surprised she wasn't too shy once she got up in front of all those people!
Everyone on Team Summer - and a couple of people from her team at Children's - signed Summer's shirt