Dear friends and families,

There are a lot of questions out there about this disease and not enough
answers.

I wanted to share with you my thoughts about Emily's case. When Emily was first
diagnosed in Feb. 04 she went under went a spinal MRI and a spinal tap, both
came back clean, no visible tumors, and no cancer cells. I feel at that time
she had cancer cells in her spinal fluid they just went undetected. This is one
of the area I would like to see research done. I know this test is un reliable,
because the same night we found the tumors in the spine her spinal tap was
clean.

I was told earlier in treatment, by Emily's doctors that the medical community
has no markers for this cancer when testing the spinal fluid. We need markers.
Are they working on this? We will find out. Other than one test coming back
suspicious, basically all spinal taps came back clean. The suspicious test
prompted an MRI of the tumor site, which came back stable. We continued
treatment. I had made up my mind that if the tumor had come back some where
else, that was okay we would just take it out and radiate that spot. At this
time my husband and I were not in agreement, he would have asked for treatment
to stop.

As the next few months went by I started to research this cancer more. I would
wonder almost daily why was my daughter the only one in her age group responding
to treatment? It did not seem fair, I wanted the answer. Then I realized if my
daughter is responding to treatment it is by God's Graces. Every case I
followed daily I saw the same thing, Chemo does not work. Radiation worked in
some cases, but it would come back in other places, sometimes not in one tumor,
but two and three tumors. This is at the time I understood that if Emily was to
survive this it was God Will. I accepted what ever God had planned for us I
would accept it as his will, and I told him so. If Emily was not to survive
this, I knew it was in our plan. It was also at that moment that I lined up
with my husband. I knew even if they found a pin size tumor, I would agree to
stop treatment, for the end result would be the same.

As it turned out Emily has several tumors in her spine. This was God's gift to
me. He knew my heart, he knew my struggles. We were judged so deeply by some
friends and family when we decided to stop treatment. He knew that, it was in
the plan. If I would have stopped treatment with a pin size tumor, imagine what
people would have said about us. I was able to tell them there was no chance
for Emily to survive here on earth. This way maybe someday it will be easier
for them to understand our decisions.

My opinion why Chemo does not work is because Children who are young their cells
are reproducing at such a high rate, especially in the brain. When you factor
in the cancer cells, and that Rhabdoiod is an aggressive cancer, how can you
kill cells, good and bad when they reproduce so fast? This is my question. I
am sure we all have a lot of questions.

One of the answers I have concluded from this journey, that is far from over, Is
the Cook family did the right thing for us. We are at peace with our decisions
we made. I only ask and pray for each family have the peace however they reach
it, it is up to them. Our journeys may be similar, but no two are the same.

We may not have been able to save Emily's life, but we can have a big part in
saving the lives of others. This is why the Emily Cook Foundation was formed.
To eventually save lives through Rhabdoid research, enhance the lives of
families thru support, education and bringing awareness to Rhabdiod Cancer.

I ask you, the people who are reading this to support the efforts of the Emily
Cook Foundation, even if it is just words of encouragement, and spreading the
word about this serious disease that is attacking our infants, and young
children.

God Bless you all.

Love,
Julie

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