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This is our story,
Jenna, our nine year old daughter, started having headaches in early December,
so we called and spoke with our pediatrician, and we came to the conclusion that we would just watch her for awhile and see
if they kept coming or got any worse, so that is what we did. I really just thought that she probably had "lucked
out" and was going to inherit my migraine headaches. But the headaches kept coming and started getting worse and she
always had them upon waking up in the morning which we thought was very unusual. They also would make her sick to her tummy,
so some mornings she would lay on the floor in the bathroom until the motrin kicked in and she would start to feel better.
I couldn't stand to watch her feel so terrible anymore so January 9th, about one month after her first headache, I took
her to the Dr. All of her preliminary neurological tests were fine, but the Dr. didn't like the fact that she was waking
up with them, so he scheduled her to have an MRI for that Friday, January 12th. Jenna was very nervous about having
the MRI, so we tried to assure her that it was going to be just fine. Tyse and I were allowed to be in the room right
beside her when they did the test, which was a relief. The test took about forty minutes, and we began to collect our coats,
when they asked us if Jenna could sit with one of the nurses while they spoke with Tyse and I alone. They took us into
an office and told us that our Dr.'s cell phone number was laying on the desk, and that we needed to call him right away.
So I worked up my courage and sat down to call him. He spoke those words to me that you always hear in stories, but
are just sure you are never going to hear for yourself " There is no easy way to tell you this, but they have found a
mass in Jenna's brain and we have to do something immediately". He also told me that he was on the phone with a neurosurgeon
at Mayo Clinic in Rochester Minnesota, and that they were speaking with our insurance company. He asked me if we could
stay put at the clinic for fifteen or twenty minutes and then call him back and he would let us know exactly what we were
to do. So in the meantime we asked them to bring Jenna in so we could try to explain to her what we knew, which wasn't
much. She obviously knew that we were quite upset, and she immediately got terrified. How do you answer your child when they
ask you in tears "Am I going to die"? We called the Dr. back and he asked us to go to the hospital emergency
room right away that they would be waiting for us and they were going to lifeflight her to Mayo clinic right away.
By now my head was spinning. Just hours ago the night before she was at dance class dancing her little heart out, and
now they are telling me that they have to make sure that she is stable enough to fly. I really wanted to know when I was going
to wake up from this horrific nightmare. So by a few minutes after 1pm we were on our way to the roof to watch them load our
beautiful little princess on to a helicopter. We were not able to go with her, so she was even more terrified.
We came home and packed a few clothes and started on our way. We were so thankful that her one hour and twenty minute
flight went well, and they allowed her to call us when she was all settled in in the PICU. Yes to make matters even worse,
they had her in the pediatric ICU. She just seemed so perfect and fine, and now she had been on lifeflight, and now she was
in the intensive care unit. The Neurosurgeon came in a few minutes after we arrived and took us to show us the MR scans.
He showed us exactly where it was and assured us that he was certain that he could resect the tumor safely with little or
no damage to her. He scheduled the surgery for Monday morning. After a very long weekend, they successfully removed
the tumor on Monday afternoon. She came through the surgery quite well. She was very weak on her right side, but as
every day went on she got more strength back and by Thursday her strength was back to normal and we were able to go home.
She did very well at home, except by Sunday morning she was leaking CSF from her incision so we had to make a return visit
to Mayo. They stitched up the part of the incision that had been leaking and they admitted her, because they needed
to start her on IV antibiotics, to make sure nothing had gotten in,since fluid was coming out. Overnight she really
started to swell and leak more fluid from other areas on the incision, so they decided Monday morning to stitch the remainder
of the incision. She did very well, and by Wednesday we were able to come home again. We finally got the pathology report
back which answered what we had all been wondering "what was this nasty little tumor". It was classified as a "Juvenile
Pilocytic Astrocytoma" which they also refer to as "The Childhood Brain Tumor", because it affects so many
children between the ages of 0-19. It is sometimes refered to as the benign tumor, but our surgeon wouldn't call it that.
He said that they can only classify it benign when they can take extra tissue surrounding the tumor to be certain that they
got it all, and in the case of the brain, they can't take the extra tissue, because it is all vital. So here we are waiting
and wondering what her future will be like, if this nasty little tumor will grow back or if she will be one of the all too
rare "lucky ones" and be able to go on with life without a reccurance. If only the research had already been
done that they are just begining to work on - maybe they could tell us what the chances of it recurring are, or maybe
even better yet they would have a cure. We have a very healthy and vibrant Jenna back right now, and we continue to
pray that she can stay that way. We are now focusing our efforts on helping to find those answers.
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