Skip to main content

Texts Between Me and Allison, Pain and Palliative But No Chemo?

My niece, Allison was invaluable to me during this time. Here are texts between us regarding Mathew’s low white blood count, his next appointments, my fears that they have given up on him and another caregiver tip.


Txts betweem me and Allison

Two days ago Mat had to come back to Moffitt. 
Spiked a fever and had diarrhea.
No infection and only the one fever spiked 
but his white blood count low and still dropping.
So until they rebound to a certain level so here 
we sit. 
Good news is 95% of the swelling in his legs is gone.
Sent March 24

                                  Sorry. Didn't know you guys went back. 
                                  Sorry I've been so preoccupied with work. 
                                  Good he hasn't had any more fever and no 
                                  evidence of infection but yes have to 
                                  stay there on IV antibiotics till neutrophil
                                  count is about 1000. Did he get a shot to
                                  boost his white cells after chemo?
                                  Received March 24


Yes shot every day until six days. 
His count was 130 when he came in 
and they don't think he has bottomed out yet.
Sent March 24

         Did they restart the shots??
         Received March 24

He has had four days of shots so far. 
At home he was set up for six days.
Sent March 24

 
                                Oh okay. 
                                That will help. Does he
                                feel okay overall.
        Received March 24


Pretty good actually
Sent March 24

       Good but frustrated I'm sure of 
       being back in the hospital so soon! 
       How's the Bilirubin?
       Received March 24

It went up a bit 3.22 3.8 but is steady.
Sent March 24


      Still better than 5
      Received March 24

Yes. They are happy with it
 Sent March 24


The next day, Mathew’s count shot up and he can go home. As before the discharge is handled smoothly. I am given a short list of future appointments and a new list of medications. I don’t see any appointments for outpatient chemo. Though I do see an appointment at The Pain and Palliative Clinic. It is across the street, not in the hospital. I was ignorant and looked up the meaning of palliative. Hospice. I thought they had already given up on Mathew. I went out to the nurses station holding that paper and all I could do was cry. Of course, the nurse had no idea about future chemo or not. So I texted Allison.


Count is 1000 going home this afternoon!!
Sent March 25

Awesome
Received the March 25


They had him set up for a port and then
an appointment for palliative care on April 8 
but I don't see another chemo treatment scheduled.
Sent March 25


Call the office and ask. Are they 
        may be waiting for his Bilirubin  
                                to come down more?
                                Received March 25

Oh that may be it. Thanks Ally.
Sent March 25

When is he due?
Received March 25


He had the five day ended on the 17th. 
Sees sarcoma doctor on 27th. Port put in 31st.
Palliative/pain (as nurse just informed me) 
on April 8.
Sent March 25


Bili was down to 3.2.
But back up to 4
Sent March 25


They will likely decide that 
                                his visit on the 27th.
Received March 25

When or if?
Sent March 25


When
Received 25


K.
They had said he's come back in for 
pain appointment and he gets blood 
work done right before Thursday appointment.
It doesn't take much to goof me up
Sent March 25



Caregiver Tip which I learned on that Sarcoma Clinic appointment. Dr Reed told Mathew that whenever he had an appointment with him to expect chemo if his blood work is okay.
Labels:

Comments

Post a Comment

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...
Post a Comment
Read more

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 ...
Post a Comment
Read more

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...
Post a Comment
Read more