December 3, 2008

Update! Update!

The highs and lows of dealing with cancer are incredible. Emotional roller coaster does not even come close to what we have been experiencing in the last 10 months.

Monday's news was probably one of the lowest lows. To be told that the stronger chemotherapy was doing nothing, and that we were injecting poison into my baby's body with no effect to the tumor was difficult. The fact that our Oncologist was "concerned" and "surprised" also did not alleviate any fears that I had. It's not good when your Oncologist is concerned. She also started talking about stem cell harvest and bone marrow transplant, in preparation for and as the result of the possible further treatments. All of these things forced that steel box that I keep in my mind to open up a bit and allow the very scary possibilities to come seeping out. Yesterday I had to mentally close that box about a hundred times. I literally imagine shoving those thoughts that begin to manifest themselves into a box and watching the steel sides, top and bottom come closing down over them. I know that this is probably a little dramatic, but it's one of the ways that I deal.

Today is one of the highs. A tentative high, but high nonetheless. The oncologist called and said that after conferring with the doctors in Los Angeles that they (the LA docs) think that we shouldn't be too worried about the growth just yet. They think that we should give the tumor more time to mature. Giving a tumor free reign makes me a little nervous, but these are the experts. Madeleine was initially diagnosed with intermediate risk Neuroblastoma. There are three genetic markers that they look at, and the main two are negative in her case, which puts her in a lower risk group. Also, the fact that her tumor has not spread to other parts of her body is another indicator of her intermediate risk status. The third genetic marker does show that she has an abnormality on chromosome 11. I don't know what any of that means, except that Dr. Kim explained today that it hasn't been proven yet, but many people think that that abnormality makes the tumor more aggressive. In fact, the LA doctors are about to publish a paper on a group of low to intermediate risk patients with a chromosome 11 abnormality. These are the doctors that are telling us to wait it out and see if the tumor can be pushed to maturity on its own. No chemo, no nothing, except for scans and urine checks. They also say no radiation for now, and our radiation consultation is being cancelled.

The LA doctors (I wish I could stop calling them that, but I don't really know their names), want to meet us and have a consultation. Our clinic is currently mailing out all of her tests, scans, etc to them so that they can review her entire file. They are hoping to meet with us next week. the "do nothing" treatment plan is not for sure yet, we need to wait for them to review her file and meet her, but that is their initial assessment.

There is still, as always, a possibility of surgery. One, a biopsy may be performed at some point to assess the maturation of the tumor. Two, a surgery similar to her previous surgeries to debulk the tumor should it get too large, is also a possibility. The part of the tumor that is growing is in the abdomen and Dr. Kim assured us that it has plenty of room to grow and is not near anything that it can damage. The part of the tumor that is in her spine has not grown, and will damage nerves, impact movement, if it does grow.

This is all as I understand it, so I may be missing pieces here and there. As you can imagine I have quite a few questions for the Neuroblastoma specialists, and I am almost weirdly eager to meet them.

So, today is a high. We are, I suppose, cautiously optimistic. We are nowhere near celebrating, but we are feeling a hundred times better than yesterday. One step at a time.


Sarah said...

Wow Wow Wow!!!! That is GREAT news!!!!!!!!

Jim Hughes said...

Blessings to you guys as you go through this!

Nick said...

It's like the stock market with you guys! It may be hard to watch the numbers day by day, but recovery is in sight - even if it takes a little longer than anyone thought. ;)

Great news for all, hope you get some quality time to pick the brains of The LA Doctors.

Hi, my name is Sarah. said...

Yay for good news! I'll be crossing my fingers for you guys, I was crossing my eyes but I kept getting headaches.

jocelyn said...

Excellent news! It sounds like you have a wonderful set of doctors working with you. I'm so glad you got some good news.