Forgive me for taking so long to blast out another email. It has been
a very difficult 13 days since we learned about Nat's tumor. The past
5 days have been particularly hard from many standpoints, but there
have also been great strides made. Many positive things have happened
since Friday at 4:30am.
By now you all know that on October 25th, a CT scan showed Nat had a
brain tumor (we now know was a Stage 1 Medulloblastoma – a type of
cancer located adjacent to his cerebellum). The surgery was performed
on Friday the 27th, we've been in Intensive Care recovering ever
since. (now going on 10 days) The surgeon is confident he removed
the entire mass – a subsequent MRI confirmed there are no visible
signs of cancer in his brain.
He has had ups and downs all week since the surgery. He has never
been in the hospital before and had never really had any medication
other than his immunizations. It has been very difficult for him.
However, the last 4 days have been much improved. Friday morning at
4:30am, he said "dad I'm thirsty" and then drank 2 8oz cans of
pediasure and 5 graham crackers. His first solid food in 8 days.
Saturday, he fed himself macaroni and cheese. Right now, he's tucked
into another graham cracker.
We are looking at 13 months to 2 years of chemotherapy. They are
prescribing chemotherapy in 21 day "rounds". We will have 4 21 day
rounds followed by 8 50 day rounds. If his MRIs look clear after the
4th 21 day round, he will be considered "in remission" – the remaining
400 days will be maintenance. Chemotherapy is his only hope for
insuring there will be no cancer remaining in his brain. Radiation
therapy is not generally performed for children under 7. Nat is 3 and
1/2. (May 11th, 2003)
Martha and I have definitely seen better days. While Nat is in
intensive care, someone has been with Nat 24 hours a day. There is a
15 minute period each night when I walk Martha to the Ronald McDonald
House – where she, Asher, and her mother Pam are staying. The baby is
doing very well. He's now 7 months old and is the sunshine in all of
the sad parents' lives at the Ronald McDonald House – including ours.
Martha's mother Pam has been here since the diagnosis, my parents down
for the surgery and stayed 4 days. They will return on the 15th.
Martha's father has left after an 8 day visit. My aunt Roberta from
Phoenix has come to stay with us and will leave tomorrow. We are
coping and helping Nat cope with his treatments and recuperation as
A lot of people have called and emailed asking how they can help.
First of all, we ask for your good thoughts, vibes, prayers, or
however you express hope for healing. He has come a long way in the
past 10 days. It has taken longer than the doctors had predicted, but
he has improved dramatically. Some friends have generously put
together means by which people can contribute financially.
Please visit www.fiberartsavengers.com for more information. Also,
you may call or email Temple Beth-El in Ormond Beach 386-677-2484 –
Additionally, we begin the chemotherapy treatments, the prescriptions
we will administer at home will be very expensive – even with my
insurance, we're looking at paying nearly $400/month for the next 2
years. I have the opportunity to pay for these prescriptions using a
Flexible Medical Spending Account through my very understanding and
generous employer MRN Radio/International Speedway Corp. As a result
of the FMSA, my salary will decrease by almost $5,000 a year. I think
we can handle this – we can budget accordingly, but gifts of Visa
check cards or Gas cards (we need to travel to Orlando 2x a week – 90
miles round trip) would be appreciated. The most economical
(cheapest) gas stations in our area are HESS and RACEWAY/RACETRAC.
Again, let me emphasize a feeling of hope coming from this central
Florida hospital. Cancer can take away a lot of things, but it can't
take away love, it can't take away hope, and we're hoping it won't
take away our little boy.