After a long day at the hospital, we returned home around 7PM. I had to get in
the car after a two-hour ride from Boston to Foxboro, for another hour
ride home to my house. I turned to Daniel and said good-night handsome,
you did awesome today....His response, "don't call me that!" He cracks
me up. I love him so much it hurts!
Our day started out around 7:30AM. We arrived at the hospital at 9AM.
First stop, radiation. He played the Wii with his Dad while we waited
for the nurses to call him for his port access.
He went in for treatment and we sat and talked with one of the social
workers. Daniel's having trouble with waking up from his treatments.
He hits, he yells and runs off. He's scared and anxious. Who wouldn't be. Lots of unfamiliar faces standing over you as you fall asleep in one room and wake up to new faces in another room. I'd freak out too. This doesn't
happen everyday, but when it does happen it makes transitioning
difficult. We have a plan in place and started working on it yesterday.
He slept for over an hour after his treatment. He needed the extra nap
and woke up happy. He ate breakfast, played the Wii and off we went to
clinic. We met with his team of doctors and discussed his treatments.
They checked his strength, walking and hand-eye coordination.
He did awesome and smiled the entire time. Our team of doctors are inspiring, they keep the important tasks fun.
When we finished clinic, we walked to the Dana Farber building for
infusion. Walking down the hallway, we had no idea what to expect.
The hallway had a bike lane, thanks to the Pan Mass Challenge. We
pretended to ride bikes as we raced down the hallway. Each of us
holding back tears, with lumps in our throats as we raced each other
with our smiling boy. Of course Nana and I were the silliest passing
each other and driving the other people in the hallway nuts. Daniel was having fun, laughing out loud and that's all
that mattered. We arrived in room 6, met our nurse and she got us set
up for Chemotherapy. Dan found the Wii station and brought it in the room for Daniel. I
set up his bed so he could sit up and play, while Carley filled out
some paperwork. He snuggled into his fuzzy blanket and started his
Mario game. He had no idea that his little body was having poison
pumped into it. He smiled, he played, we laughed and ate for the 120
minutes of treatment. He finished up around 5PM. We jumped in the car,
and started our journey home. Leaving the hospital, after a long day,
with a sick kid is no fun during rush hour. Daniel was a CHAMP
yesterday. I'm so proud of this little guy I get to call my nephew.
My 5 year old nephew was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) on October 24, 2013. Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat tumors found at the base of the brain.
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