First Meeting with Dr. Reed, Treatment Plan for Soft Tissue Sarcoma

I may have mentioned this already, but it is worth repeating now. Today, as I type Mathew’s notes from our first meeting with Dr. Reed, as with all of Mat’s journal entries, I am also reading them for the first time.

As I am typing this particular journal entry I am heartbroken, again. Still. This was the plan for my son. The treatment plan for a rare and aggressive cancer. He had one chance, this was it. That chance came and passed him by.

3-27-14

Mathew and I get up early to get to Moffitt for his blood draw appointment and then to the Sarcoma Clinic. We take the Monkey Bag, Mathew’s Journal, something to read for myself and some snacks for Mathew. I have a large shoulder bag, all of this fits in to. Over time we move to a rolling bag as our needs increase.

Instead of the front entrance at Moffitt, we go to the side, Gold Valet entrance. Mathew is still very weak and he needs a wheelchair.

I’ve pushed people in wheelchairs before. My sister Maria was in and out of wheelchairs with a spinal injury. But pushing Mathew in the wheelchair, because he was so sick, hurt my heart every time. I would see other parents look at me, and I knew what that look was, they were thinking that me pushing my son with cancer was their worst nightmare. It was mine.

From Mathew’s Journal

Notes with Dr. Reed

Desmoplastic round cell sarcoma — undifferentiated round cell sarcoma

— tends to move over things with slippery surfaces within the digestive tract.

—after shrinking - Dr. Gonzales will go in for surgery

—after surgery may c/o microdeposits of chemo

—want to keep it as compressed as possible

12-week plan
infections may be more prevalent
this tumor as rare as it comes

back and forth between VDC & I.E.

every two weeks do therapy

*best response

try to get a complete response.
genetic change part that breaks in chromosomes, the head end of one attaches to the butt end of the other. (look up to clarify)

- Pete Anderson - look up this doctor

Bob Gillius - alkaline theory

-ANC - neutrophil count -

counts keep bouncing up in the beginning**

check platelets and hemoglobin

*Ready to start next round of chemo

E: confusion

*event-free survival

and survival without remission

*let’s do 6 cycles and the prognosticate

at least 3 months before we can do another surgery.

April 1st follow up after chemo

My counts will drop in about 7 days

END OF DOCTORS NOTES

Replace the 3 Lumen Pic Line with a Port

Mathew's 3 Lumen Pic Line was replaced with a Power P.A.C. Both Mathew and I were given Medical I.D. cards to carry at all times. I have mentioned before that texting from the DRC is almost impossible. The staff told me it used to be the X-ray department so the walls are leaded. Again, the phone tree would have helped so much. I texted the following information to my niece, my sister and Mathew’s Dad and Stepmom. And probably Joseph and Carlos. I know that could have been reduced to two texts, three at the most. At the time I didn’t know about group messaging as my phone was an old Android. Texts Between me and Diane Hi. We are at the hospital early because Mat is in a lot of pain. We think the bill stent may have moved. Sent 3-31-14 Because he was NPO for other procedure they should be able to fix today. Sent 3-31-14 In the DRC sending texts is almost impossible so if you don’t hear from me for a while don’t worry. If ...

A Cancer Poem by Mathew Rodgers 2014

From Mathew’s Journal 4-5-14 “I lie awake in my pain bed metallic noises chirping from my strange computer companion”

About this Blog, A Journey Through Sarcoma

Confections for Cats, A Journey through Sarcoma is a chronicle of my son's journey through Desmoplastic Small Round Cell Sarcoma. It is intended to educate and inspire by using Mathew’s thoughts and feelings, dreams and fears through a variety of mediums; art, music, and writing. Through factual experience, what we learned and what we wish we had known. Mathew’s desire was to give meaning to his journey and in the process help anyone else on a similar path. The last possible explanation in my mind for my son’s health problems was cancer. Even the words “the scan shows a large mass” didn’t lead me to conclude cancer and when the cancer diagnosis was confirmed, I still wasn’t prepared. My Mother is a breast cancer survivor and my sister Elizabeth passed away three years after her breast cancer diagnosis. I thought I knew what cancer treatment and living with cancer looked like, but none of us could imagine or be prepared for how all semblance of routine and normalcy had alre...

Confections For Cats

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