A message from the Doses:
Our little
Isaac William Dose (19 months) was diagnosed with a tumor on his brain stem and
spinal cord on Tuesday, April 7th.
This news was the worst we have heard in our entire life and as parents
it completely rocked our world. All
sorts of thoughts and emotions were rushing through us and we could barely
think in our car as we were crying uncontrollably after our pediatrician delivered
the shocking MRI results regarding Isaac.
Through the tears we managed to tell each other, “God is good and HE CAN
and WILL use this and us for good”.
The next day
we traveled to the University of Iowa to meet with a neurosurgeon and radiologist
to discuss how we could treat Isaac. Our
first meeting was with the neurosurgeon and just when we thought things could
not get any worse, it felt like they plummeted into the ground. The neurosurgeon said things like “He may be
on a ventilator for the rest of his life” “Paralysis from the neck down is a
possibility” “He may lose vision”.
Lastly, the surgeon said he has only seen this type of tumor two times
in his life and has NEVER operated on it.
The only silver lining in this meeting was that typically a tumor in
this location he said is usually inoperable and in Isaac’s case he felt like he
could operate on him to remove as much of the tumor as possible. That meeting felt as good as a truck hitting
us…geez. At this point we started
thinking that we may need a second opinion from another hospital.
Our second
meeting was with radiology. While the
first meeting knocked us down, this meeting picked us up and we grabbed some
hope to take home with us. The
radiologists did a great job explaining how the procedure would work much
better and told us that their main priority during the surgery would be to get
as much of the tumor out as possible without risking damage to Isaac’s brain
stem. Their main recommendation was to
have the surgery and then go from there.
We knew at that point we needed the best neurosurgeon to operate on
Isaac. At this point Allison and her mom
stepped in and asked respectfully “If this was your son where would you take
him?” While they did not directly answer
it, they did talk about a few reputable hospitals, one of them being Boston
Children’s Hospital. Allison then said
we would like to get a second opinion and we were asked, “Where we would like
it from?” Allison spouted out
“Boston!....Wait, Nick is that ok?” From
what we had heard and researched Boston was the #1 hospital for children’s
neurology surgery and so of course, I agreed with her…we are fighting for our
son and we were soliciting the help of the dream team so to speak. Boston it is.
The next day
(Thursday) not much happened. Iowa was
working to overnight Isaac’s MRI results and send his medical information to
the appropriate team in Boston. That day
we were blessed to have many calls, texts and time spent from our friends and
family. You all are simply amazing…every
single one of you.
Friday we
got a call from Boston telling us that they had received all of our medical
information and they have assigned a doctor to Isaac’s case: Dr. Liliana Goumnerova, Director for Pediatric
Neurosurgical Oncology. They told us she
was going to call at some point of the day to discuss what Boston could do
for our little IZ. Allison and I
tethered our expectations just above ground level. We expected to hear slightly better
information at best compared to Iowa.
The doctor called middle of the afternoon and Allison rushed into our
home office and I followed after handing off Isaac to grandma. The doctor was smart, relatable, confident
and well spoken. Here was the
skinny. The doctor was optimistic that
she could operate on Isaac with a low risk of affecting his long term
health. Her plan is to remove a portion
of the tumor and then complete a round of chemotherapy. We asked her if she thought Isaac will live a
normal life and her thought was that Isaac has a strong chance of living a
normal life but will need continual follow up during his life to ensure the
tumor does not “act up” again. WOW. We were blown away. Joy overwhelmed us and we could not stop the
tears as we were hugging saying “we have a chance, we have a chance”. Despite this hope, this is still brain
surgery on a 19 month old and the slightest complication will have serious long
term consequences.
We will know more information soon, but it is looking like we
will travel to Boston this week as our first pre-op appointment is scheduled for Friday, April 17th. Isaac’s tentative surgery date is Tuesday, April 21st.
We would never wish this situation upon anyone and this time
has been physically and emotionally draining for us and our family. That being said, we have seen God all over
this circumstance. From the amount of
prayers flooding in around the world, to clarity on finding the best
neurosurgeon and children’s hospital, to staying positive in a grim
circumstance we know GOD IS IN CONTROL!
We ask that each of you please come along side us in Isaac’s journey and
read his updates and keep praying for our little man. He has been an amazing blessing and
inspiration to us and we hope that his life will have some sort of effect on
you. We love you and are thankful to
anyone who reads this because we know they are thinking about Isaac.
With love,
Nick, Allison and Isaac Dose
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