Skip to main content

Transfer to Moffitt 2-28-14 for Rare Soft Tissue Sarcoma Cancer



Friday the 28th.
Jennifer, the same nurse that gave us the tip about keeping a notebook, comes on her shift. They used mobile computers on stands for patient instructions and information. She keeps coming in the room and checking the computer for doctors orders. She must have suspected things were moving for us.

Everything starts to feel like one of those seemingly impossible math word problems. Two or three trains coming from different directions, which one will get there first. Mathew’s vena cava collapses, his liver shuts down or he suffers a blood clot.

A few hours later Jennifer comes in to tell us they have a bed for Mathew at Moffitt. She said, “I told them don’t give it to anyone else!” 

“Do I need to arrange transportation?” I asked, worried because I wasn’t sure how or where to start.
“No.” Transportation was being arranged. We should get ready.

It was early evening. Just myself and Mathew, no time to call anyone for help. This would happen more often than not.

It amazes me how much one person can accumulate in just a few days in the hospital.
I had already taken home the clothes he had worn when he was admitted. They were keeping him in a hospital gown and non-skid socks. 
****


But there were flowers, cards, candy, books, the Notebook, Mathew’s journal and the guitar.
I never realized how close he kept his journal until right now, as I write this. Throughout this journey, and for years before, always his journal.

I packed everything and waited. It was late at night when we got the word that an ambulance was there for Mathew.
Jennifer helped me carry everything down through the ER and out to the ambulance and my car. She carried the guitar, I can see that clearly. She chatted with Mathew and wished him luck. 

The ambulance attendants were so nice. Mathew could talk to just about anyone about something. He had a way of finding common ground and people responded to him as a result. I loaded up my car and pulled behind the ambulance. It was approx. 11pm.
I was used to traveling down Hwy 301 or I-75 to go to Tampa, but we took Morris Bridge Road, a winding country road, but a short route overall. Eventually, this would be our route of choice.

Mathew teased me later, telling me that he told the attendants he could tell that was his Mom in the car following because of my “fancy” maneuvers.


By the end of this blog I will have a number for you of the amount of times I drove Mathew the 35 miles from our home to Moffitt close to or after midnight because of fevers.

****At some point we start washing and saving all of the non-skids. Mathew had visions of forming an inspiration word with them once he was through with treatments.

Comments

Popular posts from this blog

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...

When a Cancer Patient Has a Medical Emergency

3 Days in the DRC, Part 1 If you haven’t read my first post about the DRC at Moffitt and how it works, since Moffitt does not have an ER, you can read about it here.  https://confectionsforcats.blogspot.com/2018/04/neutropenic-fever-after-ie-chemo-and.html In summary, the DRC is where an existing Moffitt patient is directed to go if they have a medical emergency.  Usually, we would be there a few hours or overnight (since we arrived at midnight or shortly afterward) until they had a room for Mathew on the ward. This particular visit Mathew stayed in the DRC three days. As mentioned in my other post, the DRC has maybe two rooms with a bathroom; otherwise, one bathroom for about a dozen patients. In Mathew’s case, a patient with a lowered immune system.  This time Mathew was in the room furthest from the bathroom.  When inpatient, we had a routine for getting him to the bathroom. First, he needed the IV unplugged (often quickly) and most times, I ...

Hair Loss After Chemo for Sarcoma, My Son's Point of View

I can't imagine or pretend to know how it feels to lose your hair because you have cancer and the chemo causes your hair to fall out.  I only know what I saw with Mathew and years ago, my sister Elizabeth's experience as they lost their hair to chemotherapy. But it was something that affected Mathew more than just the initial hair loss, it had nuances. Here is a journal entry. It's short but I think it speaks volumes. MATHEW’S JOURNAL     5-23-14 Lately, I’ve been envious of people’s hair. Well, I guess not envious of other people’s hair but missing mine. I told my Mom about it and expressed to her that I was afraid I was falling prey to vanity. She expressed the idea that I may be missing having hair because it’s part of being healthy. I do miss having a life and at the same time, I’m afraid that I may never have a full life again or that I may lose what’s left of the one I have. -  I’ve been thinking about dying a lot lately. I don’t know wh...