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

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.

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