awakeIt is now Friday November 17th – we are into our first day of
chemotherapy. It has taken quite a bit of recovery on Nat's part to
get here. Not only did he have to overcome the brain surgery and all
of the horrible side effects of the anaesthesia, pain, and
anti-inflammatory drugs, he also had to stabilize his liver enzyme
levels after the port-catheter was inserted surgically on Monday.
He's a tough little cookie – he's met each challenge by kicking and
screaming. He's still handling this situation more maturely than many
of us probably would.
By now you all know that on October 25, 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 27, we spent 11 days in Intensive Care at the Arnold
Palmer Children's Hospital in Orlando recovering from the surgery and
anaesthesia. We have now been in the Oncology/Hematology Ward for 9
days awaiting the day when his Series of Chemotherapy treatments would
begin. They began on the 16th (Thursday) at 12pm. Each "day" of
treatment is a 24 hour period. He will have 4 "days" of treatment.
We hope to be released at the end of the 4th day (Tuesday November 21,
if all continues well).
Since we have come to the oncology ward, this staff is accomplished
and professional, as we saw in the PICU . There is a sense of family
between the staff and patients. Nat's Oncologist is Dr. Don Eslin –
he runs this ward as well as an outpatient cancer clinic we will visit
twice weekly for the first few months of Nat's treatment. The
hematology/oncology ward (hem/onc) has 11 beds, so there are
constantly kids and families rotating in and out for treatment.
Hem/Onc has very active play therapy and social work programs, so
there's always something going on up here. Pizza parties, craft
workshops, and more put on by both the hospital and area cancer
charities including "BaseCamp" and "Candlelighters of Central
Florida".
Nat has been walking for 5 days now. He's weak, but he can walk.
He's been in pull-ups since his surgery, but he's starting to show
interest in using the potty again. He has daily occupational,
physical, and speech therapy. He has come a long way with all of the
work and activities he's done in the past 2 weeks. We're going to
continue these therapies after we leave the hospital.
Just to recap: 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 11, 2003)
Support from friends and family has been a huge help. Her parents
and mine have been able to stagger their work schedules to be with us,
as have my Aunt Roberta and cousin, Martin, as well as our close
friend Joy Dickinson, who lives here in Orlando. Nat's first "pass"
from the hospital was a trip to the park near Joy's house to feed the
ducks and soak up some rays. The breaks and naps Martha and I have
been able to take as a result of our family's visits has kept our
energy and health up to monitor and aid in Nat's treatments. My work
family has also been incredibly supportive, despite the rigors of the
close of the NASCAR season. They've worked to get our house clean and
ready for Nat's return, which we hope will happen early next week.
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 3 weeks. Chemotherapy has begun - and it's tough enough on
adults let alone 3 year old boys. The Fiber Arts Avengers charity
raffles brought in quite a bit of money for Nat's homeopathic regimen
which we hope to start next week. This is a series of nutrition and
"whole self" therapies that are not covered by insurance. We have
learned that Homeopathy will help his immune system recover between
inpatient hospitalizations. Many thanks to those of you who
participated in that raffle. We will let you know when the next one
will occur. We have received many gifts of food, money, care
packages, toys for Nat – we appreciate them all. 'The Jewish
Federation of Volusia and Flagler Counties has been very generous.
Also, you may call or email Temple Beth-El in Ormond Beach
386-677-2484 – cathy@templebeth-el.us . They are still collecting
money to assist us in our twice weekly trips to Orlando. If you live
in Louisville, Rabbi Gaylia R. Rooks is in the beginning phases of
starting a drive to fundraise for the Ronald McDonald Charities in
Nat's name. Please contact Lark Phillips at 502-423-1818 for more
information. Rabbi David Ariel-Joel will also need volunteers as he
brings a group to cook and serve 2 meals at the RMH in Louisville –
the Friday before Christmas and the Friday before New Years' Eve. He
may also be contacted at The Temple at 502-423-1818.
Martha and I and our entire family are in awe of the wonderful work
the Ronald McDonald house performs daily for so many families who must
spend short and long amounts of time in the hospital. When we go for
inpatient chemotherapy every 21 days, we will spend four nights at the
RMH. Additionally, as we begin the chemotherapy treatments, the
prescriptions we will administer at home will be very expensive.
We'll also make twice weekly trips to an Orlando physical therapy
clinic as well as the outpatient oncology clinic visits. 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. People have
asked if we are establishing a medical trust outside of my employer's
FMSA – we are certainly thinking about it. If you have suggestions,
please email them to me. We have spoken with executives at SunTrust
Bank and understand the mechanics of establishing a trust. Once we
get home and have some time to sit down with a lawyer, we will let you
all know which financial institution and which trust we have chosen.
I had been counting the days since Nat's diagnosis, day 7, day 16, but
I've come to realization that I need to stop this enumeration. Our
family is on a journey now – the goal is clear – cancer free in the
next 500 days, but counting the days will only make them seem longer.
Day by day, one day at a time, we will get through this. Martha and I
are overwhelmed and humbled by the number of cards, letters, phone
calls, emails, prayers, and well-wishes we have received. I keep
saying to myself "we don't deserve this outpouring of love", but the
truth is, that Nat does. Nat deserves everything that Martha and I
can provide him as well as the love and wishes and prayers of our
friends, families, and new friends we've made here in Florida over the
past year. There isn't enough bandwidth on the internet for me to
fully express my appreciation to the many people who have written,
called, sent money, comforting items, toys, written from their church
or temple prayer or study group… I could go on and on and on.
Thank you for keeping Nat and our family in your thoughts and prayers.
He isn't out of the woods yet, but with your continued help, the
journey gets much easier.
Update from Marnie about the auction
i'm aiming to do another one in mid-December to hit last-minute holiday people. So that is when the jewellery will go up.