I also graduated with Kim and Know the Schimetz family well. Please know that you are in my thoughts and prayers in your trying times.
Sent: Tuesday, April 13, 2010 2:09 PM
Subject: Tues. oncologist appt
The pathology report came back positive for clear cell sarcoma. This cancer is agressive
in that it has a propensity to come back….even after 9-10 years. It hasn’t been a fast growing
cancer for Matthew and that seems to be the norm. The dr. wants to get Matthew to where
there is “no evidence of disease.” This is what was accomplished 3 yrs. ago and what they are trying
to accomplish now with the thoracotomy w/ wedge resections on each lung. The current plan is to
remove and watch. Matthew will be getting CT scans every 3 months for at least 3 yrs, then maybe go
to every 4 mos for 2 years, biannually for 5 yrs. (The dr said every 3 mos. for as long as he could).
He also wants to do a bone scan before the next thoracotomy. (am I saying that right?) He knows the
last surgery sight is going to “light up” on the bone scan, and so wants to get it accomplished before
the next surgery so there will be better results. Clear cell going to the bone is possible, but not as likely.
Alternative treatments: If it reappears after this, especially in the near future, there is achemotherapy
(adrimicin (sp)?) that is possible. Radiation is possible, but is limited by dose, and the lungs are
particularly sensitive. (Matthew is not a candidate for a lung transplant, due to having cancer). As
mentioned before, these “treatments” have not been shown to be effective; surgery is the best
option….Matthew can do the “remove and watch” for as long as he can have lung tissue removed if
he wants. We had 3 yrs since the last time and can go many years w/o it returning.
(or MIRACLES STILL HAPPEN)
As the U of M is the only phase 1 investigational institute in MN (meaning there is the latest/newest
treatments available here…but not necessarily covered by ins because it is investigational), he
does have more options here. Dr. Mulrooney said he’d check into other phase 1 institues in the US
and see if any of them have a particular interest in clear cell sarcoma. He recommended the following 2
websites;
on trials and is sponsored by the Nat’l Cancer Inst.
If the bone scan comes back with unfavorable results, he may recommend a different route. Of course, our hope
and prayer is that this will be it, or barring that, before needing chemo, there is one out there that has
been proven effective.
Matthew’s first comment was in reference to Mother Theresa’s saying….the “God won’t allow more than I can
handle, wish he didn’t trust me so much” one. we picked up lunch at Chipotle and ate in the car on the
way home. (something I do not recommend) As we approached the Albertville exit, he said,
“Oh yeah, I have cancer.” He forgot for a bit ( can’t figure that myself)…when asked how he is doing he responds
“Better than I thought I would be.”
I, for one, am thankful he has been of an age since the beginning where he can understand the necessity
of the surgery/suffering he endures. One sees many little ones in the oncolology depts. and, as a mother,
I would find that harder to endure that suffering than the trial we are currently experiencing.
As another cancer patient (whom I admire) has said many times: “GOD IS GOOD, ALL THE TIME.”
GOD BLESS YOU ALL AND PLEASE KEEP PRAYING! 
Thank you,
Perraults
