Jonny May

Today marked the end of the 5 day regiment that
Jonathan has to follow in taking his topotecan chemo
med. The next two days will be spent going to
different therapies and doctor office visits. Jonathan
receives many different types of therapy including
acupuncture to boost his immune system and to help
with pain control. Our favorite is the relaxation
therapy that he gets because we can join in. They
have special chairs that recline in a dimly lit room
and vibrate softly to music to relax you. Jonathan’s
favorite music is actually the sound of seagulls and
the ocean. We all envision ourselves on the beach in
San Diego as we listen to the swelling of the ocean
waves! They have four chairs in the therapy room so
if they are not taken by patients then we get to join
in on the relaxation, too.

Jonathan was visited today by his tumor researcher,
Dr.Vistica. He was describing the process that goes
into researching cures for aveolar soft part sarcoma,
the rare kind of cancer that Jonathan has. Each mouse
is genetically altered so that this particular type of
sarcoma cancer can be injected into the mouse and
still continue to grow. I think they really suppress
the immune system of the mice so that a small portion
of the tumor will take root and grow. Each mouse costs
between $50 and $100 dollars. So far they have
injected the tumor from Jonathan into 35 mice! He
also told us that the chemo drug that Jonathan is
taking called topotecan is showing promise in tumors
that express the hifa one alpha marker. Jonathan’s
tumor expresses the hifa one alpha marker!!!!!

Thursday Jon starts back on his five straight days of
chemo and then he will have two weeks off. We are
looking forward to returning to the farm on Friday and
finally sleeping in our own beds!

Today Jonathan’s leg swelled up again so before chemo
they ran a battery of tests to rule out infection.
Everything came back stable but we will see his
oncologist in the clinic tomorrow to discuss the
sarroma, the fluid pocket that developed at his old
tumor site. They have had to aspirate the site twice
already removing 150 and 110 cc’s respectively.

Jonathan wants to be walking on his own RIGHT NOW but
it looks like it will be awhile before he is able to
get around unassisted. Since it was a federal holiday
today the usual shuttles were not available for us
after his chemo treatment to take back to the Inn so
they sent an ambulance to transport Jonathan back to
the place where we are staying. He was just
commenting that the only experience he never had and
never wants to have is an ambulance ride and then the
next day he gets one!

He has only experienced slight nausea and a headache
from the chemo…they said it would be a few weeks
before other symptoms start to show up. Until then he
is pushing himself hard to get feeling and motor
control back in his leg.

Once again, a special thank you goes out to all our
wonderful friends who continue to support Jonathan on
his journey to find a miracle.

God bless,
Sharon

We arrived at NIH on Sunday and the rounds of testing
commenced on Monday morning with a clinic visit at the
National Cancer Institute and admission into the NCI
Hospital. Throughout the course of the day he had
blood tests, imaging tests, a brain MRI, a PET scan in
the nuclear radiology unit, and a DCE (dynamic
contrast-enhanced) MRI. The DCE-MRI is done before he
starts his treatment, two weeks after the chemo
treatment starts and at the end of 8 weeks of
treatment. This is a test that does not use radiation
but uses magnetic energy to examine the inside of his
body. Using MRI with a special non-radioactive dye
the doctors were able to get an idea of what the blood
flow is like in the tumors of his lungs.

On Tuesday he had an EKG and a phlebotomy work-up.
Jonathan also had many consults with the various teams
that will be working with him.

Today was a very scary day. We started with the good
news that he did not have any cancer tumors in his
brain!!!! In anticipation of the lung biopsy, he was
not allowed to eat or drink until after the procedure
which actually didn’t finish until 4:00 pm. Poor
Jonathan - this was the day that he had a great
appetite and was thirsty and dry all day but couldn’t
eat or drink. A lung biopsy is a procedure fraught
with potentially serious pitfalls including a
collapsed lung but he recovered without any
complications. It seems that they wanted to biopsy
the tumor that was nearest the outside wall so that
they did not have to go so deep into his lung where
most of the lesions are. The problem with that was
the location, which was behind a rib bone. They
sedated Jon with an IV that kept him conscious but
provided pain relief as they inserted a rather large
bore needle under sonogram guidance. There was a 20%
risk that his lung would collapse so they had people
present to handle any complications. After his lung
tumor biopsy he has had several chest X-rays to make
sure that air is not escaping through the punctured
hole. They said that your lungs are like a balloon
and when punctured can collapse so we are lucky that
this complication did not arise. Jonathan was
dreading the test and Robert and I were on pins and
needles as we waited for word on his situation this
afternoon in the waiting room. At the end of 6 weeks
of chemo treatment he will have to repeat the lung
biopsy. Tumor biopsies, which capture a small part of
his cancer, are very important to his clinical trial
which is done for research purposes. They will
compare the first biopsy with the one in 6 weeks and
determine if the drug is working. From Nov. 30 to
this week some of his lung mets increased 45% so it is
imperative that we find something that stops or
shrinks the growth. He has numerous tumors of varying
sizes in both lungs.

Tomorrow he begins his chemo regiment with his first
dose of Topotecan which is taken orally. He has an IV
port in his arm so that they can do blood draws every
hour for the first 8 hours after he is administered
the drug. They want to chart how his body is reacting
to the chemo drug. Jonathan will receive 5 straight
days of chemo with 2 days off. On Feb. 21 he will meet
with the orthopedic surgeon who removed his primary
tumor and on Feb. 22 he will go back on chemo again.
On Feb. 23, if all goes well, Jon and I will return to
Kansas where he will continue to take his oral chemo
for 5 days and take 2 days off. The next two weeks he
can stay in Kansas with us and have his blood draws
completed once a week at the hospital in Beloit. We
will need to return to Washington DC then on March 18
to begin Cycle II of the protocol. The following week
he will be admitted to the hospital for additional
testing and another biopsy.

While Jonathan was having a sonogram on the vascular
system in his leg I happened to meet a fellow who is
one of Dr.Rosenberg’s success stories with immuno
therapy. He had stage IV Melanoma cancer and seems to
be cured now. They will be doing a special on him and
the research that Dr. Rosenberg is doing here at NIH
on the TV show entitled 60 Minutes. Apparently it is
difficult to get involved in a clinical trial because
it is so limited so I guess Jon is lucky to be the
first one with sarcoma that Topotecan will be
administered to. Now we have to pray that it works!

This place is just amazing. Everyday Jonathan has
consults from various teams of doctors and
researchers. For example he was visited by a
nutritionist who talked about diet, a medical social
worker who is working on co-ordinating his schedule, a
medical oncology team, the general surgery team, an
acupuncture specialist, and a pain and palliative care
service team that is helping Jon with pain management.
He was also seen by his protocol team headed by
Dr.Kummar and a physiatrist who is a doctor that
specializes in rehabilitation medicine. Tomorrow he
will begin physical therapy and eventually they want
to do an EMG(electrical diagnostic test or miography)
which will investigate the vascular and nerve
structure that was damaged in surgery. They insert a
needle and use electrical shock to assess the extent
of his nerve sensation. We are still hopeful that the
motor function will return to his foot but in the mean
time he still remains numb on the top half of his
entire left leg.

I can’t tell you how lonesome we are for home.
Jonathan has been very brave and is a real inspiration
to everyone for the way he is handling this situation.
Although it has been a lonely Valentine’s Day, we
still have hope that a brighter future is in store.
Even the smallest of victories in trying times like
these is a true blessing. We pray daily that the
victories continue and become more
prominent as time passes.

Our best to all of you who continue to support
Jonathan in any way. We appreciate your prayers,
loving thoughts, and concern.

God bless,
Sharon and Robert

We checked into the Children’s Inn at NIH which is
located across the street from the National Cancer
Institute in Bethesda, Maryland. Tomorrow Jonathan
begins his testing regiment and will be admitted to
the NCI Hospital for about 10 days.

We had a restful weekend and Jonathan enjoyed a long
hot bath in our host family’s jacuzzi. We also
celebrated his first real shower by taking him out to
a waterfront restaurant for lunch with Marilyn and
Cianna Timbers, some friends formerly from Tipton, KS.
The restaurant was located on Kent Island which is
situated in Chesapeake Bay. We sat by the window and
had a spectacular view of the bay as we sampled
seafood.

Jonathan is beginning to get some feeling back in his
foot and it tingles like your foot is asleep. He also
has muscle cramps in his foot. The good news is that
the feeling sensation is slowly creeping up from the
side of his foot to the top….areas in which he has
had no sensations previously. We are hoping that the
motor control in his foot begins to return, also.

The address for us for the next 10 days will be:
The Children’s Inn at NIH
Jonathan May - room 2E8
7 West Drive
Bethesda, MD 20814-1509
The room phone number is:
301 496-1876

We will keep you posted each day as he starts a new
clinical trial here at the National Cancer Institute.

We pray that this will be the answer to the lung
tumors that he has. He looks good, all things
considered, and he is ready to fight!

God bless,
Sharon and Robert

Yesterday Jonathan visited the surgeon and the staple
pulling procedure was painless..after all he has
little feeling in that area.  He also had 150 cc’s of
fluid extracted from the tumor site.  He had his
baseball hat over his eyes as the surgeon inserted a
giant needle and started pulling out the liquid that
had collected where the tumor used to be.  Because of
this hole in his leg and a few areas that have a
little drainage the doctor told him he had to wait a
few more days before showering….so the shower and
jacuzzi have to wait until Saturday!!!!

Today we drove to the National Cancer Institute where
Jon had a barium-drinking and IV-contrast-dye CT scan
on his lungs.  This CT is done in preparation for the
lung biopsy he will have next week.  They want to know
where the largest lung tumor is located for the
biopsy.  On Sunday afternoon we will move back to the
Children’s Inn at NIH which is across the street from
the National Cancer Institute (building #10 at NIH).
This Sunday will probably be the best day for Jon as
next week marks the beginning of grueling tests and
the start of an experimental chemo therapy.  I
question if he has had enough time to recover from his
major surgeries but Jon wants to get started as soon
as possible. It has only been 3 weeks and 2 days since
he was so critical.

On Monday he is scheduled for an MRI, PET scan, chest
x-rays, and an EKG.  He will be admitted to the
hospital and will be there for about 9 or 10 days.  If
all goes well he will begin chemotherapy shortly after
his lung biopsy.  They will do a lung biopsy at the
beginning of chemo and again after 6 weeks on the drug
to determine if it is working.  Lung biopsies are
painful so of course we all are dreading that
procedure.

They have started Jon on a new medicine that will help
with the nerve pain he has in his leg and foot.  He
continues to take his injections of low molecular
weight heparin called Fragmin and all his other pain
meds.  Yesterday he had to take Diphenhydramine,
Ranitidine, and Prednisone before his scan today and
of course he had to drink the barium which they tried
to disguise as a “berry smoothie”.  It takes a journal
to keep track of his tests and medications!

Jon continues to wear TED hose and when he walks he
has orthopedic devices to aid him.  He has lost 43
pounds since his birthday in October but he now has
hair (dark and curly) and has to shave once a week!
Jonathan’s hair is growing slowly and he still has not
had a hair cut since last May.  The new chemo drugs he
will be taking have hair loss as one of the side
effects though.

We hope to head home sometime after he is dismissed
from the National Cancer Institute Hospital and has
his doctor’s appointment on Feb. 21st.

We hope this weekend brings a few simple joys such as
a shower, jacuzzi, crab cakes, and a little outing by
the Chesapeake Bay.

Although next week will be taxing for Jonathan he is
ready to forge ahead in his battle with this ugly
cancer.  Your prayers for the next miracle are
certainly appreciated.

Our love to Jon’s cheer squad and support team,
Sharon and Robert