FAQs and more info

We're home now and adjusting back to normal life. Summer was not as thrilled as we'd expected when we first got home last night. I think she was disoriented from being woken up, too close to needing more pain meds, and wanting to stay outside. But after some oxycodone and time to adjust, she was running around the living room like nothing had happened.

Today we've had a couple of visitors, and even took a walk to the park where Summer went on the swings. She had a rough morning, but was very happy as soon as we got outside.

Here I'll address some of the questions I get most frequently about treatment and this second surgery:

Q: Since the doctors already think she'll need proton therapy, why did Summer have to have another craniotomy? Why not just do the radiation instead?
A: Summer's tumor is part solid mass and part cyst. In the last three and a half months since her first surgery, the cyst grew very rapidly and was quite large. It can only be reduced surgically.

Radiation is effective in treating the mass portion of the tumor, and preventing it from producing more cysts, but it won't fix any cysts that already exist. Although the cyst didn't appear to be causing any problems for her now, it needed to be addressed surgically to prevent future problems and shrink the field of radiation that will eventually be necessary to stop the tumor from growing and refilling the cyst.


Q: Why not just remove the whole tumor? It's benign, right?
A: Yes, Summer's tumor is benign but it's considered malignant by location, since there isn't really any room to spare in the brain. It's also sticky, and very difficult to remove without damaging important structures, like the optic nerves, pituitary gland and hypothalamus.

Our doctors recommend a very conservative approach to tumor removal since radiation typically has a very high success rate for craniopharyngioma. So far, she has no pituitary damage, and we hope to minimize that damage by leaving it alone. Surgical removal of the tumor frequently causes more pituitary problems than radiation, and is more likely to affect production of some of the hormones that are most difficult to replace effectively.

Q: So what's next?
A: Jason and I have some big decisions to make in the next week. We have an appointment with the oncologist on Friday to discuss whether we'd like to move forward with the chemotherapy option, or just skip straight to radiation.

As of right now, we're leaning toward chemotherapy. There's no guarantee it will work, but the doctor doesn't think we lose anything by trying (side effects are very minor) and we might gain more time until radiation becomes necessary for Summer.

The only real downsides are: 1) it might not work, 2) it means more wait-and-seeing, and 3) it won't treat the tumor mass, so that will continue to grow (and could potentially put off more cysts).

On the plus side 1) it might work and buy time; 2) it could mean Summer experiences fewer side effects from radiation if we are able to wait, although we'll never ever know if this is true or not, and 3) the mass may grow slowly enough that it won't cause problems or increase the eventual field of radiation too much.

It's all a lot of hypothetical and we'll-never-know-for-sure stuff to deal with. Frankly, it's more than my brain can handle right now. Up until Wednesday, we thought proton therapy was the guaranteed next step and chemotherapy was never even on our radar. I honestly was a little bit relieved to give up the wait-and-see approach and DO something about this darn tumor.

We haven't yet had a good scan with Summer, which doesn't make the prospect of more waiting-and-seeing any easier for me. We did bring that concern up with the oncologist and he agreed that scans every six weeks would be beneficial, at least in the beginning, since her tumor has proven it works quickly. He also said that if it becomes apparent the treatment is not working, we can stop at any time and skip to radiation. That flexibility is good.

I have a lot more research to do before I'll be comfortable committing to the chemo option. It would be injections of Interferon, not Bleomycin as I had stated before, so I want to look into the difference. There's not a lot out there on this particular treatment used for Craniopharyngioma because most kids are old enough to just go straight to radiation and don't need to buy time. I'll dig up some studies, solicit feedback from the Craniopharyngioma support group I belong to, and also get a second opinion from Dr. Merchant at St Jude's if possible. I already have come up with more questions for Dr. Geyer (the oncologist here at Children's) since we met with him yesterday.

Now, I'm off to go on another walk with Summer!