Jonathan's Journey:
It all began a few year's ago, he would have problem's breathing,
when he was awake he would stop breathing, when he was sleeping he
would stop breathing, we went to the doctor and they all had the same
diagnosis " Overweight, Severe Sleep apnea and Chronic
Sinusitis" well, after Memorial day 2013 that night he told me he
was scared and he couldn't breath, we took him to the E.R and they
took a CT scan of his head and his throat, they told him he was okay
and they sent him home telling him that he had sinusitis and to
continue the medication that he was already taking at the
time.
The next day we slept in because we didn't get
back home till about 4am, I woke up and had about 25-30 missed calls
from his primary doctor, she ordered stat blood work and a stat CT
with Contrast. As soon as she got the results back (as he waited) she
ordered him to go to the Hospital everything was set up so that he
would be a direct admission what happened next we did not
expect.
His first hospital stay they did multiple test
and scan's, they found that he had a tumor which they thought to be on
his skull in the back of his throat. They had to go in and take a
piece so they could do a biopsy on. Since they were unable to intubate
him he had to be trached because is airway was so obstructed. A few
day's later we received the results; the tumor that is inside my
fiancée is a Chordoma Tumor- a Rare bone cancer
that is slow growing. The hospital that he was at and the team
of doctors did not believe they were capable of doing it nor were they
comfortable.
The next step was to transfer to U of C a
teaching hospital and what a fantastic place full of doctors that knew
what they were doing, we had a team of compassionate doctors that had
faith that they could heal him. Jonathan had to have a few surgery's
he had to have a peg tube place, his first surgery was a spinal fusion
because the tumor was wrapped around his c1 and c2 vertebrae which in
return killed his bone and had to have those taken out and replaced
with Rods, pins, and bone graft. The next day was his major surgery,
they went threw his mouth and took as much of "Henry" out as
they could. From what we understood there was a pea sized amount left
on his lower right brain stem, which they then said was about 3
fingers left. The plan was to be discharged heal and return for proton
therapy. Well, he was discharged went to inpatient therapy got
discharged had outpatient therapy and a few days ago we had to go in
for a MRI and they discovered what we didn't want them
to...
Henry has returned, BIGGER and with a tail trailing
down his spin to his c6 vertebra, we are asking for help because the
Doctors we feel do not feel comfortable performing this surgery, they
said there is a possibility that they would have to cut him from the
nose down and cutting open his palate. They have referred him off to
an out of state hospital in Boston for the upcoming surgeries. Since
he has been unable to work the financial Burdon has taken over and we
cannot do it alone, we are asking for your help to cover the Lodging,
Travel, and General Expenses of being there, also since he has
officially been terminated from his job he has then been let go from
his insurance company and that is were Cobra comes in.
Through this whole ordeal he has not once felt bad for himself but it
has taken his faith above and beyond, his love for our lord has grown
and he does not want people to think that he is giving up. We believe
that the Lord will bless us. Amen
So, adding on to jonathans journey, he will be leaving for his 2 part surgey on december 5, 2013 his first one will be Dec. 11, 2013 the second will be a week later. He will be going to johns hopkins in Baltimore. Thank you for your support and prayers.
For the latest updates his family has set up a Facebook group in order to provide updates and support for Jonathan and his family through this journey. You can join this, by following this link: https://www.facebook.com/groups/211466959028074/
-TEAM NIEWSKI
