Wednesday, May 13, 2009

Excellent day and STABLE!!!

Matt had a slew of appointments today. First an MRI, then a visit with Neurosurgery, then a visit with Oncology. It was wonderful to learn early in the day that the tumor is STABLE!! Gone would be perfect, but stable is excellent - and about as good as it gets for us! Dr.Walker is not recommending surgery at the moment. He also said he would try to hold off on radiation.

We celebrated our good news with a visit to PF Changs for lunch in between appointments. I joked that if we had received bad news, we would have eaten our lunch in the hospital cafeteria! :-)

After lunch Matt had an appointment with Oncology, where he hadn't been in almost 7 months............BAD MOMMY! We got all up to speed with them. They are also recommending we hold off on any treatment as the tumor remains stable. Matt will be having his Broviac removed sometime very soon - like this week! I feel sort of giddy and surreal that we so unexpectedly received this gift of Matt's cancer stabilizing. One day, we were plugging along, fighting this thing with chemotherapy, and talks of radiation and a 4th craniotomy, and now, suddenly, it's stable and we are cautiously going to get on with our lives. It's a very strange feeling! I know that things can and probably will change in an instant, but for now, we will enjoy what we've got!

Surprisingly, all of the doctors we met with were very much in favor of Matt having the surgery to treat his hypothalamic obesity. As I was explaining the surgery to Dr.Walker and we discussed the issues Matt's facing, I mentioned that the surgeon wasn't sure Matt should have the surgery because most of the kids are so much bigger than Matt. He echoed my exact sentiments when he said, "why would you let it get that bad if you had a treatment that you thought might work??" Exactly. Also, both Dr.Walker and Dr.Lemons had heard of Dr.Lustig and thought him to be on the forefront of obesity research and very well-respected in the medical community. This was so reassuring! I have worried and wondered what *other* doctor's thought of Dr.Lustig. Just because a doctor is well published and presents at a lot of conferences doesn't automatically make him a doctor I want performing experimental procedures on my son! It sounds like that's not the case with Dr.Lustig, though. Both of our local doctors felt confident that we were seeing the right doctor for Matt.

Sunday, May 10, 2009

More San Francisco, More Questions.

This past week, Warren took Matt back to San Francisco to talk more about treatment options regarding the hypothalamic obesity. The bad news is that the testing confirmed the diagnoses. Matt's insulin levels during his oral glucose tolerance test were off the charts 30 minutes after beginning the test. It should take about 90 minutes for his insulin to 'max out' and it shouldn't ever get as high as Matthew's was. Also, although we've been pretty happy about Matt's weight gain this month (after all, it was only about 2 kg.!), the doctor was very worried. Because we track his weight in Kgs., it doesn't register how much that would be in pounds. On the one hand, two months ago he gained 5 kg. or ELEVEN pounds in one month. That's why 2 kg. feels pretty stable! However, that is 4 lbs. With a gain of 4 lbs. a month, Matt is on track to gain 50 lbs. over the course of a year. When you put it that way, it's much scarier! Also, because he has had several months of even more extreme weight gain, he is actually on track to gain closer to 70 lbs. this year. YIKES!!!

Warren and Matt also met with the surgeon who is working with Dr.Lustig and actually performs this experimental surgery. Warren was really impressed with her - she is the head of pediatric surgery at UCSF. She was leery of doing the surgery just yet. For one thing, she didn't think that Matt looked 'that bad' yet. The other children who have had this procedure are so big they can't fit in the MRI machine...... I don't know how I feel about that. Do we really need to let it get that out of control before we try something aggressive to help him? I'm uncomfortable with the 'do nothing' route just because we happened to catch the hypothalamic obesity earlier than some other patients do. Her other rationale, though, made more sense. She is also not willing to do the surgery until Matt's cancer treatment is finished. Her fear is that by doing the surgery to treat something secondary to his cancer, that the cancer treatment options will be limited. She is not willing to risk that. So, we have a slew of appointments on Tuesday (MRI's, Neurosurgery, Oncology) and we will try to determine the best course of treatment for Matt's remaining tumor. I am also anxious to get these doctor's opinion on the surgery itself. I trust our doctors (especially Dr.Walker in Neurosurgery), and think it's a good idea to discuss risky, experimental procedures with them! Later next week we also have an appointment with Matt's local endocrinologist. We are going to discuss the possibility of using the medication (Octeotride) to treat Matt until we are able to get more clarity on the surgery. It feels better than doing nothing!