“Bear was born March 27th 2015, almost 9lbs, big,
healthy baby boy. Everything was totally normal until 3 months old, when he
started to refuse to eat. He would only take 4-6 oz of formula all day long! He
started to lose weight fast! By 4 months old he started weight checks, at 5
months old he was diagnosed failure to thrive and a referral was put in to see
a specialist. Before we got into the specialist, one night Bear's eye started
to jerk back and forth like crazy (nystagmis). I hurried to the ER worried it
was so some sort of seizure, with my older 4 kids I have never seen anything
like this! The first local ER, told me he was fine, to get him seen by his
pediatrician and into an eye doctor. I knew it was something more and was not
okay with that answer! We loaded up and drove the hour to the closest
children's hospital. Within 15 mins if being seen they had him admitted and an
MRI scheduled the next morning. That morning, Oct 13, 2015, was the day our
lives were turned upside down. Our empty room was filled with about 15 doctors
and nurses all at once. We were told our 6 month old baby had a big mass in his
brain. They then figured out everything, why he wasn't gaining weight and not
eating, he was diagnosed with diencephalic syndrome, the location of the tumor
was causing it all. His tumor is inoperable, they have not even been able to
biopsy it. He started chemotherapy as soon as possible. He did 18 months on
Vincristine and Carboplatin. He also had a g-tube placed to gain weight. He had
to be on continuous night feeds. Many appointments of jumping up and down for
just an ounce gained! After his first birthday, we started Pediasure and he
started to eat by mouth more and more! His g-tube was removed in June 2016!
Having MRI every 3 months. Every MRI was better! It was getting smaller! After
the treatment plan was up and many stable MRI’s, the doctor said it was okay to
stop chemo! Jan 12, 2017 he was done! Then we had MRI in April that showed
concern for growth, but our hopes were high it was just a contrast thing, we
would have to wait until the next one to know. July 6th 2017, we found out it
had grown for sure, grown actually bigger in that 6 months than it was when we
saw it the first time! The next day he started chemo again, 2 new drugs. He is
currently going every 2 weeks. He is a typical 2 year old right now, through
all of this he keeps amazing us all! He is a chatter box! His eyes still do
have very bad nystagmis that is more noticeable some days more than others. He
is now 30lbs, normal size! It’s still a struggle but we just count our little
achievements and all he has overcome daily!”
To follow Bear’s story, visit his Facebook page:
Blessings for Bear. https://www.facebook.com/BlessingsForBear/
#blessingsforBear #tilleryisloved #TILfoundation
#alexsmillionmile #GoGold2017
To support childhood cancer research in honor of
kids like Bear, make a donation to our team (TIL Foundation) with Alex’s
Lemonade Stand Foundation. https://www.alexslemonade.org/mypage/1314958
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