Stem Cell Day
Sam's appointment was at 9 am Thursday, July 13. We got to the clinic
early and on edge. After some brief evaluations and discussion about difficulty drawing blood from him for some tests, we
were assured Sam would indeed be treated and not to worry.
So we go in to see the doctor for the pre-treatment consult, and he
informed us that he was not going to treat Sam because he didn't think it would benefit him. I felt like I had been
kicked in the stomach. (I thought he was telling us to give up, but that wasn't the case.)
He said that he believed that Sam has pressure on his brain, and that the
stem cells would tend to THAT problem instead of the damage we want it to repair. They apparently go to the most prevalent
issue, and pressure isn't something they can do anything about. He wanted us to go home, get a shunt (to relieve pressure)
and come back in a week!
Now, I have spoken with Sam's doctors in the states many times regarding
pressure, and was assured that it wasn't an issue for him, so none of this made sense. However, the doctor in Rotterdam
said that Sam's ct scan indicated pressure - since ACT had that report for 6 months now, we couldn't understand how no one
had seen this already.
By this point, Tim and I had actually come to terms with the idea of going
home and returning to Holland later, provided ACT reimbursed our travel expenses. (It was too reminiscent of our heartbreak
in Tijuana, but this setback was an ethical issue, one where the doctor's ethics wouldn't allow him to take our money
for no good reason!) He also told us that aside from the fact that his own ethics wouldn't allow him to treat someone
for no benefit, with stem cell treatment being under the microscope he couldn't jeopardize his reputation and clinic
that way. We respect that.
After an hour and a half and many phone conversations, the clinic in Switzerland
assured us and the doctor that it would of course benefit him, and that flooding him (as a 25 pound baby) with 1.5
million stem cells would be enough so that even if they did dawdle at the pressure site, they would move on to make new connections
at the damaged area. As the doctor in Rotterdam treats adults usually, he agreed that this made sense and agreed to
treat him. We made sure that we knew he had changed his opinion, and wasn't just agreeing to it to be rid of us.
So we waited for the cells to thaw, and waited and waited.
When I finally took a break and used the restroom, they came and got Sam. Of course. So I had to go and find them,
and when I walked in, things were already underway. He was on Tim's lap for treatment, but I took him - he may
as well stay mad at me and not associate Daddy with pain, right? He got two injections above the temple, and two on
the back of his neck. It was horrible and he screamed and he screamed and I cried and I cried, but it was all over
in less than a minute. Less than a minute.
We waited to be sure there was no adverse reaction, and while we were
waiting the director of the clinic came out to tell us that he had contacted ACT again. They had agreed that if
we are not happy with the results and think that the pressure was indeed a problem, they'll treat him again for free.
That sits just fine with us - we can get there for that if we need to.
After about an hour and a half, we were free to go. We headed back
to the hotel, back to the airport, and back to London.
