Friday, September 10, 2010

Summer is 2 today!

Summer kicked off her second birthday with an early morning MRI. Here she's sleeping off the anesthesia.

We didn't really learn anything new from it. The cyst is still refilling, which is to be expected. The catheter is still in place, and everything looks okay for us to start Interferon next week.

We talked about the feedback from Boston, and Dr. Geyer said that the tumor board here had also discussed the proximity to the optic chiasm and didn't think there was impending danger at this point. With careful monitoring, we should catch any changes in time to get to radiation before that area is put in danger.

On Monday, we'll go back in to have her head shaved over the Ommaya reservoir site. They'll sterilize the area, apply some numbing cream and use a needle to pull a little bit of the cyst fluid that has accumulated through the Ommaya. Then they'll inject the same amount of dye back into the cyst. This test will make sure the catheter is functioning as it should and will work for the treatment. She'll then have a CT scan - awake - to confirm that the cyst isn't leaking.

I'm not sure how well the CT scan will go. She's never had one unless she was already under anesthesia. They said I can hold her throughout the procedure and that it's pretty quick, but Summer has a reputation for fighting pretty much anything the doctors and nurses want to do. They may have to give her some sort of sedative to help her calm down. We'll see.

Then the plan is to start treatment on Wednesday afternoon. They'll withdraw as much of the cyst fluid as possible through the Ommaya and then inject a small amount of the Interferon into it. That will be the first of 12 treatments, which she'll have every Monday, Wednesday and Friday.

Yesterday I googled 'intracystic Interferon' (for about the millionth time over the past few weeks) and my blog came up on the first page of Google results. Hard to believe that the treatment we're about to start is so uncommonly used that my blog is one of the best hits...

Most of the information out there about Interferon is for systemic use, which is a much larger dose given intravenously, and affecting the whole body. It does have more side effects, but compared to other drugs they're pretty minimal. When given in a very small dose directly into the cyst, the only side effects we might see are flu-like symptoms: fatigue, fever, weight loss, loss of appetite and behavioral changes. These side effects will go away once the treatment is done.

We got home from the hospital at about 10am this morning and kicked off the birthday festivities:

The gifts
"Happy birthday Mommy!"
It's a surprised bell!
A walk to the store
Testing out the trike
She did not want to wear a helmet!
Someone gave Summer this amazing hand-me-down gift. She was very excited! Can't wait to play with it more tonight.
Summer's birthday card made it onto, but sadly not on the Birthday Show. Next year I won't miss the deadline! They only scanned the front, but here it is:

It's been a fun day, despite a visit to the hospital, and there's more fun to come! Now, I'm off to frost a birthday cake!


  1. Happy Birthday to Summer! I enjoy reading your blog Jessica, you do such a good job keeping everyone informed. I love that you sent her card to Sprout, we watch the birthday show every day and I always think, "I should do that!" I know we don't know each other but through Casie and your blog I feel like I know you:)

  2. That card is so cute, as are all the birthday pics! I'm glad she got the hospital stuff out of the way early, so you could redeem the day with fun stuff. We look forward to next weekend. The prayers continue from all of us and our church. Love to you all. Aunt Nora

  3. Many prayer to you and your family from mine in Savannah, GA!!! I would like to donate something in honor of Summer's treatments and medical expenses! I am a follow mother of 3 and photographer as well. If it is ok with you I would like to give 100% of my profit from prints sold to you guys! Let me know and I can set something up! Happy belated Birthday to little Summer. My oldest is named Autumn!:)

  4. Jessica,
    I know we haven't talked in ages, but I wanted to let you know that my thoughts and love is to you and your family. I had surgery recently and Aunt Sandy came to visit and she gave me a bit of the updates on Summer. I read often your blog and thank you for doing it. you are an amazing Mom and I will be thinking of Summer.

    It's amazing how quickly they grow.
    Cousin Wendi French