Wednesday, May 12, 2010

What we learned today

The short story: Summer is healing well and it is more likely than not that she will have to go through radiation sometime in the next few years. Nothing really new to report, just a lot more detail about the things we already knew.

Here are the details:
Today we met with the neurosurgery nurse, Mandy, who has been working with us since Summer's surgery. She checked out Summer's incision site and said everything looks like it's healing really well. She was a little concerned about the amount of swelling that was still there, but Jason and I could tell that it had gone down significantly over the past two days. Just since that appointment this morning it has gone down quite a bit more. At this rate, I wouldn't be surprised if the swelling is gone entirely by the morning.

As far as recovery from the surgery goes, Summer can't swim or go to her gym class for 2-3 months post surgery. We're supposed to keep her in "feet on the ground" activities until then. Not sure how well we will succeed at that - she is entirely back to her normal self and (high!) activity level at this point.

They're not too worried about her bumping her head because the skull that was removed is tightly stitched in place with string. Obviously it's not ideal that she bump her head, but there's no helmet necessary, which is good since I doubt we'd be able to keep one on her!

Speaking of stitching...we finally asked how many stitches Summer has. The nurse said that she has two more layers with about the same number of stitches we see on her head - so that's approximately 174 stitches. I think that buys her some bragging rights. :)

After the neurosurgery check-up, we met with Dr. Geyer, a Pediatric Oncologist. So far, we've been dealing primarily with the neurosurgery team and had only been introduced to one oncologist and the HemeOnc nurse. From here on, they'll be our primary contacts and the ones we work most closely with on Summer's care. Today's meeting was our chance to formally meet with the doctor and ask any questions we had come up with so far.

We went over the pre- and post-op MRI scans, and got to see that the tumor is now just a little bigger than half its pre-op size. Prior to the surgery, it was about the size of those big gumballs you see in the quarter machines at the grocery store. Now it's about half an inch at its widest point. It is still bigger than Jason and I both imagined it would be post-op, but it is definitely a sizeable difference.

Dr. Geyer talked to us a little more about how the tumor board discussion went last week. Apparently they had a pretty long conversation about Summer because the path we're taking with her care is a little different than standard treatment for craniopharyngioma. It is very rare for a child under the age of 2 to be diagnosed with this type of tumor. Most are between 5 and 14 years old, and can therefore begin radiation right after the surgery. Because Summer's so young we're taking the wait-and-see approach. As I've mentioned before, we're hoping to postpone radiation for a while, thereby reducing the long-term side effects it might cause.

There is a small chance that the tumor could be done growing. All cells (with the exception of malignant ones) are programmed to multiply until a certain point, and then they stop. It could be that the stopping point for these tumor cells has been reached or will be reached very soon. Unfortunately, there's no way to know.

From here, we'll monitor the tumor with MRIs every three months. We'll also have her vision and hormone levels tested every 3-6 months as an additional indicator of changes in the tumor. Jason and I will also be on constant watch for the same sorts of changes we now know were caused by the tumor - sudden fears developing (sign of vision changes), increased urination, etc. We've been told to have a low threshold for calling the oncology team so we can catch any changes quickly.

If the cyst portion of the tumor continues to grow, we may choose to deal with that and continually reduce the pressure it causes to avoid any damage to the optic nerves and pituitary gland. There are a number of ways they could do this - further surgery, inserting a tube into the cyst that would grant access from outside Summer's head whenever they need to drain the cyst, or the injection of something into the cyst that would stop it from re-filling. Any of these options would buy us more time until we need to do radiation.

If the tumor tissue itself continues to grow at a pace that concerns the doctors, we may do another surgery and/or begin radiation treatment sooner rather than later. There are a couple of different types of radiation that can be done, but the one they recommend for kids Summer's age is called proton beam radiation and is only available in a handful of places. We'd likely go to MD Anderson in Texas or Massachusetts General in Boston for the entire 6 week process. Children's has a close relationship with both centers.

The way the radiation works is that it aims a number of radiation rays (anywhere from 5-100) at the tumor from various angles. Each beam is a fraction of a dose (1/5 to 1/100, depending on the number of rays). They converge at the site of the tumor, so the tumor gets a full dose, but the surrounding tissue where the radiation enters the head only gets a small portion. The doses last about a minute a day, 5 days a week for 6 weeks.

The radiation technology available here, at UW Medical Center, creates rays that pass all the way through the head, so the normal brain tissue between the entry point and the tumor, as well as the tumor and the exit point, is subject to radiation. Proton beam radiation goes to the tumor and then stops, so less radiation that gets delivered to normal brain cells.

So there's a lot of information about something we don't even know if or when we'll have to do. There is no magic age that suddenly makes radiation less risky, but it sounds like if Summer were three years old they would recommend we start radiation now.

I'll continue to post here on the blog as we find out any more information. We have a vision appointment in two weeks or so, then endocrinology tests in 4-6 weeks. Summer is doing so well now, there's really nothing more to report! Tomorrow, it's back to work for me!

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