After 2 Weeks: It's About to Get Real

Not that it isn't real right now.  Trust me, we are all too aware of the reality.

But, after some more diagnostics and a visit to Primary Children's Hospital in an effort to choose the right doctor for Matti, she is starting chemotherapy on Thursday, April 23.  Lifesaving treatment that makes life really rough during the treatment.

Up close and personal, now, for her and our family.

The good news: 24 weeks.  Isn't it odd when you are looking forward to 24 weeks of chemotherapy? Our first information was that we would be looking at 43 weeks.  So, yeah, it's good news.

Her doctor we chose - Dr. Wright of the Huntsman Cancer Institute and Primary Children's Hospital - is an expert in pediatric oncology.  Specifically, soft tissue sarcomas, which rhabdo is.  She stated that over 80% of the patients she sees have soft tissue sarcomas.

In her words, "We expect her to beat this and have a good life after the treatment."  No doubt, we appreciate the confidence.  And it wasn't false hope type of confidence you might hear sometimes.

Yes, this is extremely rare in children her age, according to Dr. Wright.  But it is a favorable site to treat and the subsequent scans seem to indicate there has been no spreading and there is no, so far, evident large remaining tumor cells in the site it was found.

Her doctor who found it was quite aggressive in trying to remove something he found and didn't like and felt he needed to get rid of it.  Apparently, he did a good job, which Dr. Wright said is also very rare when it is found on accident.

And school.  Her teachers and counselors have been very supportive and accommodating with all the time she's been missing for tests and so forth.  She has one more tomorrow for the doctor to get a close up look at the affected area to see what she can see and collect another sample or two to test.  This is not Dr. Wright, but a local doctor with specialties in what needs to be done.

Matti is concerned about the future.  School.  College applications come next year.  Testing that is supposed to be done.  How is she going to finish and maintain her grades.  Obviously, all second in line to her life, but real concerns for a 17-year-old.  Her parents worry about it, too, naturally.  There are good people who are working with her and us to develop plans to get the work done - including something called "homebound," if necessary.

Lastly, she got her "port" put in this past week.  Basically, it's a receptacle that is hooked directly to her veins to pumps in chemo, or anything else the doctors need to over the next several months.  Cool thing about it is that it is under her skin.  So she has a weird bump in front of her shoulder, but the nurses know right where to put in her IVs and stuff from now on.  No flattening veins or track marks.

Several of the "Laurels" - girls her age at church - wanted to cut their hair really short to show support for Matti and donate their hair to "Locks for Love," which is where Matti donated her hair.  Although there is some dissent on the part of some leaders in our local congregation (potential hurt feelings for girls who don't want to do it and other such (frankly) BS nonsense), I believe the girls are still going to do it on their own, which they do (and should) totally have the right to do.