Seth was born full term (a little
over-due!) but with three birth marks.
One on his back, left foot, and left hip. We’d been following them making sure they
didn’t change, get any bigger and always had the pediatrician take an extra
close look at our regular visits. I was
more concerned about the one on his hip because it had what are best described
as “skin tags” on it and was worried these would bother him as he got older
because they were right where his pants would sit.
At Seth’s two month check-up the
pediatrician mentioned the texture of the one on his hip had changed a little
bit so let’s have a dermatologist take a look just to be safe. I made an appointment at the local dermatologist
she referred us to. We went for our
appointment and pictures were taken to send out to her extended network to
which no one had a good idea of what it might be so it was decided a biopsy
would be done. We had one of the “skin
tags” removed and a little of the tissue under that taken for analysis. Again it couldn’t be determined what it was
so at that point I opted for a second opinion and got a referral to Boston
Children’s Hospital Dermatology.
On October 26, 2016 we had our first
visit at Children’s dermatology. Seth
was quite a hit with all the doctors coming in to take a look at his birth
marks because it was something they had never really seen before. They offered to use the sample received from
the original dermatologist to analyze or take some more of the skin tags off
for pathology to use. Due to my concern
that they would bother him later in life we opted to have more removed, better
to do it while he’s young and won’t remember.
He wasn’t too happy about the whole thing but did great and was a
trooper through it all.
A few weeks later I got a call from
Dr. Liang saying pathology couldn’t determine it was nothing from the sample
they had taken so they wanted us to come back for a deeper tissue sample called
a “punch” biopsy.
On November 9, 2016 we returned
to Children’s dermatology for Seth to have the deeper tissue sample taken. Dr. Liang mentioned pathology takes each case
very seriously because they know if they say it’s nothing the doctors may do
nothing so they wanted to be totally sure.
Seth once again was a trooper for this procedure, at one point he just
gave in and sat there quietly until it was over.
On November 15, 2016 I received a
call while at work from the Dr. Liang stating she had good news and bad
news. She heard back from pathology and
they did not find any cancerous cells in the sample itself however the type of
cells they found in Seth’s biopsy have sometimes been associated with
underlying tumors. For that reason, he
would need to have a full body scan to make sure everything was ok. She said she didn’t want me to be caught off
guard but Dana Farber would be the ones to reach out to schedule this
testing. I managed to hold it together
on the phone because I think I was just in complete, total and utter shock
thinking there is no way my perfect, happy, smiley baby boy could possibly have
cancer!! But when I got back to my desk
the realization that it may be possible hit and I cried like a baby. I missed a meeting and my boss sent me home
for the day.
Later that day we received the
call from Dana Farber scheduling his appointment for December 2nd. December 2nd?!?!?!? that was two
weeks away and this is cancer we are possibly talking about why do we have to
wait so long? Steve had a conversation
with Dr. Liang and she said because they didn’t find any cancerous cells in the
sample it was not an emergency to be seen but she would ask if it could be
moved up.
On December 2, 2016 I went to
work in the morning before Seth’s scheduled visit at Dana Farber’s Jimmy
Clinic. Early in the day I received a
call from a nurse saying they wanted to do an ultrasound of Seth’s belly and
head. It was scheduled at Children’s
Hospital an hour before our scheduled appointment at the clinic. This made me a little nervous but I figured
this must be the body scan they were referring to previously. We waited for what seemed like forever at the
ultrasound area because they were so busy but finally got called back. Seth was flirting with the tech as he does
with all the ladies. She did his belly
first so that he could have a bottle when she was done. She said everything looked good but was just
going to review with the pathologist before moving on to his head. She came back and Seth enjoyed a bottle while
she did the scan of his head. She did
not say everything looked good this time which I mentioned to Steve and that
made me nervous. She came back and said
they got what they needed and we could head over to the Jimmy Clinic. She wished us luck and got directions for us
from the receptionist.
We arrived at the Jimmy Clinic
where Seth got his ID band and vitals were taken. The nurse gave us directions to exam room G
(I will never forget that) rather than taking us there which seemed strange to
me. When we arrived at the room there
were about 6 people waiting for us. I
honestly thought this can’t be the room, we must be interrupting a meeting or
something. But they welcomed us to the
room and we sat down for what would be a conversation we never in a million
years thought we would ever be having.
Dr. Greer welcomed us and we had a little small talk but got right into
things. He took a little family history
and then explained that the cells they found in Seth’s birth mark are sometimes
associated with tumors in the belly and brain which is why they did the
ultrasound of those two areas. The belly
came back clean but they did find a spot in his brain. We fell apart. Again how could this be happening? He told us that there are 4 documented cases
ever that show the link between these skin markings and a rhabdoid tumor. He explained that when the tumor is in the
brain it is called ATRT and that is what they believe Seth has. Seth is the first case they have ever seen
where the skin markings led to the tumor.
Usually the child shows symptoms of the tumor which is then tied back to
the markings on the skin. We went
through a whole slew of questions about why, how, what does this mean going
forward, etc. They didn’t want to
elaborate too much because they didn’t know 100% this is what was going on but
were also fairly certain. Dr. Kieran
from neuro oncology joined us later and introduced himself saying he had been
setting up appointments for Seth to have an MRI early next week. He mentioned while the ultrasound showed
there was something there it is not the best way to get a good picture of what
is going on and an MRI would be necessary.
And this is where our new journey
with Seth, Sadie and as a family really began.
The reality that our perfect little baby boy has what is believed to be
cancer…
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