Date sent: 10/05/99 11:49 PM
Subject: Update and phone calls
Hello Everyone....
I am happy to report that even though Spaulding is a dreary place, the people are great
and Dan had a great day. Dan saw a Physical Therapist, an Occupational Therapist, Speach
Therapist, Chaplain, Neurologist, Oncologist, Dietitian and RN Case Worker.... And that's
just the ones I can remember. So, needless to say, his day was busy and exhausting. To
that end, we would like to request that our friends and family who care to call for a
check in, please plan to have a short call to say hello and count on the email updates for
the details.... Between all the appointments and phone calls, Dan and I didn't even get to
talk to each other today. In return, I promise to give more detailed updates in the email.
So, the PT and OT came in together and were there before I arrived at 9:00. Dan was
already dressed for the day and working. They tested his sensory abilities... which were
strong; his motion... which is still not strong. They do not "count" the
resistance kind of work that we did over the weekend as movement, but could see that Dan
has muscle tone.
The oncologist (Dr. Bunting) is the doctor assigned to Dan's case. He comes to see Dan
everyday, he will head the care team. We have not had much of discussion concerning the
oncology portion of Dan's care, since Dan does not want to know about the pathology report
until Friday. So, I have respected that and not pushed to get further into that path yet.
The OT is very interesting. He is teaching Dan to dress himself, is around for most of
the evaluations - either as an active participant or he sticks his head in to see how it
is going. In the afternoon he came by to suggest to Dan to go to an Oncology support group
tomorrow. Dan was very interested in that so I am sure he will go. There was an
interesting discussion here. We were checking email when Mike (the OT) came in. He asked
if we used any web-sites to learn about Dan's cancer. We said yes, there were several good
sites, some he knew of, others he didn't. But the interesting thing is, that we have
always been hesitant to consider Dan a "cancer" patient. Our understanding of
the tumor the first time was that the tumor was "Low grade malignant... so low grade
as to be benign." So, when we asked Dr. Goodman if Dan had/has cancer the answer was
"technically, the tumor is a type of cancer but so low grade..." They said
"if you are going to have a brain tumor, this is a good one to have because it is so
slow growing..." We went to a "cancer survivors" support group and felt
slightly inauthentic because we believed it was all over, and that Dan's life had not
really been at stake. It was an event to endure and get over. We have been more affected
as a family by the resulting seizure disorder than by the fact that Dan had a tumor
removed. That is, until now. The result of this surgery began our journey into
understanding just how serious this is. The fact that leaving Dan with a temporary
paralysis was the best possible alternative the surgeon had when faced with this tumor has
had a huge impact. The fact that the tumor is infiltrating and not well defined is also a
concern. At rehab we are on a neurophysiology ward, and the OT pointed out to me all the
resources available for families of cancer patients... and then later this conversation...
So, I guess if we ever had uncertainty about this before, I think we get it now. Dan has
cancer.
The speech therapist showed Dan pictures and had him read. If you see Zachary ask him
to tell you the story I told him about the animals and Dad's ST. She had two interesting
insights. One is that the tone of Dan's voice is weak because he is not getting enough
breath. And that as he starts to feel better he will have more breath. She will also plan
to train him in ways he can support his breath so that he can speak better. She also said
that his word recall was pretty good, but that when he was in conversation, it was taxing
to both choose words and hold a conversation. It is really tiring for him. She will also
help with some reading issues.
The case worker's job is to help coordinate care between the rehab and whatever we do
next. She only stopped by for a few minutes to introduce herself. She has already been in
touch with our insurance and will be able to help answer our questions.
Later in the day the PT and OT came back becuase I had told them that Dan had practiced
walking at the hospital before. So, they got him up and had him try it. Here is where our
first big breakthrough came ... finally.... As they were helping him, he would move the
right side, shift his weight and they would slide his left foot forward. So, while they
were doing this, Dan was able to bring his left foot forward on his own two or three
times. So, not a complete step, but the first step towards a first step.
Overall, a great day.. full of hard work and hopeful events.
We love you all, thanks for the cheers and prayers, obviously they are working....
With love and hope, Abi
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