So You're Telling Me There's a Chance

This is the time when I tell everyone about that thing that we were having to contemplate and consider.  I made brief mention of it a few weeks ago.  I know you all remember. You know, the one that recapped Disneyland.

So, I'll get to that. Matti was up in Salt Lake this week. When she goes up there, she is receiving a cocktail of three (3) different chemotherapy drugs. There are two that are just pushes, including the vincristine that she gets every week down here in Las Vegas.

The pushes don't really take long: they access her port, insert the syringe and...push.  Hence, the name.  The cyclophosphamide takes longer and is administered through a drip. For those, Primary Children's likes to keep Matti overnight for those visits to monitor her.

As it turns out, the treatment plan actually calls for her to have a two-week break from chemotherapy treatments.  This was not something that Nicki or I remembered.  We just remembered being told she would have them every week.  So, another welcome reprieve - from that.  Officially, whoa, we're half way there.

In addition, from here on out, her treatment plan does not include the cyclophosphamide, which means no more overnight stays at Primary Children's.  The dactinomycin will be given every three weeks with the vincristine, with the vincristine being administered in the 2 weeks in between. Again, we didn't get a photocopy of the treatment plan, we just stared at it. Now, these details make for welcome surprises.

They will monitor her blood counts each week, as standard precaution to watch for enough blood cell production. They need to make sure her counts are steady and stable enough for July 28.

See, the doctors don't know exactly where the tumor originated. They can make educated guesses based on where rhabdo occurs in children Matti's age. They spoke to the doctor who found the thing, but for not being an oncology surgeon, Dr. Swainston did a bloody great job of removing all evidence of the cancer.

As noted before, there was no evidence in all the scans and biopsies taken.

But because they don't know where it started, they can't recommend for sure where to do radiation. Statistically, it most likely originated in the uterus or cervix. And Dr. Swainston confirmed he found it partly there.

I am just throwing out names of female organs that I have heard discussed with doctors. I have no idea where they are, exactly, or what it all means. But I know that the uterus is where babies grow. And if the radiation oncologist were to do radiation on the uterus, the tissue would be destroyed making the uterus nonfunctional. Plus, they don't know exactly where in the uterus to radiate, anyway, because of the previously mentioned efficient removal.

So, Choice #1 - hysterectomy. Not her ovaries, just everything else. Keeping ovaries means hormones are still being produced and...it's just good when a woman can keep her ovaries.

Choice #2 - don't radiate and preserve the possibility of bearing children in the future. Plus, wait for recurrence, because, as we were told in all of our preliminary consults, when radiation is not done with rhabdo, it almost always comes back. And that means starting all over with chemotherapy and anything else determined for the next time.

Matti is really not interested a recurrence and doing chemo again. Neither are Nicki and I interested in seeing Matti do it again. So, is it aggressive? Yes. But will it produce the best chance of no recurrence? Yes.

Matti knows it doesn't mean she can never have a family. Her 5 siblings are all adopted. She knows there is are perfectly acceptable and valid methods of bringing children into a family besides bearing them herself.

This week she and Nicki met with the surgeon who would be doing the hysterectomy. I participated on the phone. It was comforting to talk to him and hear the whole thing explained. We felt more at peace with the decision. One thing we were not aware of is that because she will still have her ovaries, she could have eggs harvested in the future and attempt to have biological children through surrogacy.

This was not even an option in our minds as we were all headed towards this decision. So, when she is married many, many years in the future, she will have this as an option if she desires. (Did I say many years in the future?  Many.)

There will still be radiation. But the plan is only two days (about two minutes each time) and the doctor will target a very specific area that will be left after the surgery very near the area where the uterus used to be attached at the bottom. Yes, I have trouble typing the words.

Laugh if you will, but moms talk about every anatomical part of their children. Dads don't really talk about their daughters' anatomy.

All this surgery and radiation does mean that the chemotherapy treatments will take a pause for another 3-4 weeks while her body heals. At this point, we are looking at her final chemo treatment being around the first week of November, rather than October.

Let's say it how it is, though, Matti is going to survive her cancer and the treatments and be able to live a long life. The battle isn't over, but the outlook is good. Doctors are all positive and we are too. But the fight still sucks.