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.
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