Jonny May

Jonathan’s commanding legacy lives in the hearts of people he inspired. His spirit of determination and optimism defined his character. The challenges he faced were continuing and endless yet his courage in facing them was remarkable.

The cancer medical world has been transformed by his energy, dedication, research, and commitment to helping others.

Epidemiology, geography, hunting, the environment, and sports were his passions. As a college baseball player, a scholar athlete, senior class president, a Medical University of Ohio researcher, the Public Health Student campus organization President, a farm boy, a member of National Honor Society, and a Collegiate Scholar, he represented a young man of integrity, courage, and commitment.

As parents, we cherish our children’s future, but Jonathan’s was cut short. He was so young and never given the chance to work as an epidemiologist, to have children, or to determine his destiny. But he left his mark on our family, in his community, in his circle of friends, and the medical world just because he lived.

Jonathan put his life on the line so others could be spared. His extraordinary bravery will eventually save many lives. We’ve all gained renewed admiration for Jonathan who made courage and cancer fighting his career. He is a study of a man who, at risk to himself, his future, and his well-being stood fast for the battle. And this in time will give heart to others.

At least 3 of his 27 years were spent on this earth with physical pain and suffering. But during all this time, we never heard him complain or indicate that he felt like God had dealt him unjustly. Because of his efforts, other cancer patients will have a better chance, the young a greater opportunity to live with dignity and respect through their cancer battle, and the medical community will have an example of his medical miracles. He showed wisdom, strength, and courage in his struggle for solutions that rarely ever came his way. But it was the thoughtfulness, the caring, the encouragement, and the support from his family and friends that lifted him up.

Jonathan, you are now our angel. We will forever miss you and your dimpled smile, your warm hugs, and you will forever be in our hearts.

Jonathan is out of the operating room and in recovery. Overall the surgery went well. They were able to remove as much of the tumor as possible and they also removed bone tissue and marrow. He inserted a titanium rod that extends from his shoulder to his elbow and it will provide stability. He filled in the hollow place with a cement filler. The amount of blood he lost was about enough to fill a coke can. It was probably a good idea that they cut off the blood supply yesterday so that he did not bleed so much during surgery today. We will wait to see how he is getting along and how much they are able to manage the pain. That will determine when he goes home. Unfortunately the doctor said that he could not be sure that he got it all. We will just have to wait and see.

Hopefully they will move Jonathan to the new part of the hospital when he gets out of recovery and he will have a nice room complete with a couch that pulls out into a queen bed. The surgery was THE BEST CASE SCENARIO and he did not have to go to the surgical intensive care unit. The critical care team was on hand and they did not need them!

Finally, we feel like all your prayers are working little miracles for us. We will take them one day at a time. Another ray of sunshine also occurred right before Jonathan went into surgery. Rose Birtley from New York, who is head of the ASPS Foundation, arrived just in time to give him a pep talk and give him hope. He went into surgery surrounded by Brandy and her mother, his parents, a brother, and Rose.

Thank you for your prayers…they worked!
With lots of love and appreciation,
Sharon

Jonathan checked into the hospital at 11:00 this morning and by 2:00 he was in a radiological intervention room having an angiogram where they entered through his right inner thigh and threaded a device up into his humerus bone and shoulder area. They attempted to cut off the blood supply to the tumor in preparation for his surgery tomorrow and to help minimize the bleeding since he has a very vascularized tumor. This surgical procedure took almost three hours. He was in the recovery room then until 7:00 and finally got to his room after that. He is in a lot of pain and was experiencing pain in the end of three fingers on his right hand. The hardest thing though for him is the fact that he has to lie flat on his back until 10:30 pm and that is driving him nuts. He wants to sit up and eat because he knows tomorrow he won’t be eating.

He has an ice pack on his shoulder area and Brandy will help him eat a piece of pizza as soon as he can sit up! The nurses are giving him morphine through his IV to help control the pain and he is still taking anti nausea meds.

Jonathan’s forehead looks like he has a sunburn…it is the effect of radiation. At least his head is not hurting.

They are rather concerned about his anesthesiology because they think his lungs are too full of cancer. They may try to start the surgery without general anesthesia and use a block but they may have to put him under all the way depending on what they find out when they get in there. They will be scraping out the cancerous tumor, which takes up most of the space in the top part of his upper arm bone, and putting in several rods that will go down towards his elbow. They will fill in the missing bone area with a cement-like filler. If they find out that the bone will not hold then they will insert a prosthesis. We are hoping for the best case scenario.

We had a restful Easter break at the farm and Jared
was home for the weekend.  Jonathan got in a morning
of turkey hunting, spent one night at his brother’s
house in Hays, and enjoyed visiting with a friend and
former coach who dropped by to check on him.

On Sunday We arrived back at the National Cancer
Institute in Washington DC with a down pour of rain
and cool temperatures. We got soaked climbing down the
stairs of the plane, crossing the runway, and then
climbing the outdoor stairs to get into the Dulles
Airport all during a blinding rainfall. We were wet
and cold and had to wait nearly 45 for a wheelchair to
assist Jon to the area where we were to retrieve our
luggage.  What an ordeal our arrival was!

Now we are settled in to the Children’s Inn at NIH
where Jonathan is undergoing his third round of an
experimental chemo treatment. This morning he had a
phlebotomy workup and a CT scan. At 10:00 we met with
his clinical doctor and heard the disappointing news
that the tumors in his lungs had increased by 15%
since February.  Earlier in the week we had heard that
his last PET scan revealed a slightly different story.

The PET scans still indicated multiple lesions in his
lungs. While some of them had remained unchanged
others were significantly decreased in intensity and a
number of them no longer demonstrated increased FDG
uptake.  This meant that the metabolism rate inside
his tumors was decreasing.  We were sure that we were
going to receive good news that the tumors were
shrinking also. The inside of the tumors are changing
but overall they continue to increase in size.  We
decided to continue with one more round of this drug
since obviously it was slowing down the growth rate
but now they are considering him for another clinical
trial that might open up in June.  He will have to be
tested to see if his tumors have a certain marker in
them so he will undergo the blood testing next Monday.
It will take up to ten days for the results to come
back.  The future is unknown at this time but we will
continue on the current regiment with 5 days of chemo,
2 days off, five days of chemo, and then two weeks off
to rebound.  Jon will return to NIH in May for more
tests and then they will tell us if he qualifies for
another study or if he can continue with this one.

Jonathan looks good and is maintaining his weight for
now.  His appetite is improving.  He still remains
fatigued, has trouble sleeping, and has difficulty
walking very far.

Right now Jonathan is busy reading one of Lou Holtz’s
books and is preparing for a speech he is giving at an
up-coming banquet.

We will be home next week and I am looking forward to
wrapping up another school year. Robert will be
returning with Jonathan on May 12 and I will stay
behind to finish the school year and run the farm
which for me means feeding the animals and fixing up
the flower beds!

Please continue to keep Jonathan in your prayers.  We
really need that miracle now.  We can’t wait much
longer.

Sharon

We discovered this morning during his ultrasound that
Jon has developed a blood clot on the back of his left
hand. The doctor came in and assured us that it was
not related to his cancer but probably a result of one
of his IV’s. Warm compresses will help to dissolve it
we hope…but still a worry.

Currently he is down in nuclear medicine having a PET
scan. He was injected via IV with a nuclear medicine
that contained some kind of glucose that will adhere
to active tumors. This is just one more test that
they are doing to locate every tumor and determine its
size, location, and level of vascularization. I had
to leave the room for the next hour as he is
considered radioactive. By 1:00 they will put him in
the “tunnel” and scan the results of his IV. Right now
Jon is sitting in a dark room in a recliner with his
foot up but I am sure he is unable to sleep. He still
has chemo this afternoon, a workout in the gym, and a
DCE-MRI to undergo. He has not had anything to eat
yet and he would love to have a big breakfast. I’m
sure he is dreaming about food right now!

I stopped off in the chapel and attended Mass at 11:15
this morning. I prayed that he will make it through
the day without any further complications.

Keep Jon in your prayers…he needs a little extra
boost right now.

Blessings to you all,
Sharon

We had a busy day at NIH but tomorrow will be a long
day full of testing and dread for Jonathan.  For
starters he cannot eat or drink anything until after
his PET Scan at 12:30.  He will actually start his day
with an ultrasound at 9:00a.m. on the back of his
hand.  He has a nodule that appears swollen so they
want to check it out. Around 2:00 and after his PET
Scan he will have his chemo drug. He would like to get
to the gym for a spin on the bike and then at 4:30 he
has a DCE MRI.  He will be spending a lot of time in
the “tunnel” tomorrow and he is dreading it already.

We had hoped to go on a small dinner trip to the Inner
Harbor at Baltimore tomorrow evening with patients
from NIH but if his testing is not completed by 6:15
or if he feels rotten or too tired, we will not go.

Today Jonathan reported to the NIH Gym for his first
workout.  The gym is located on the 14th floor.  He
was rather tired though because he had just had his
chemo.  After the elevator ride to the 14th floor Jon
had to sit down and rest for awhile.  I thought it was
the fatigue from chemo but he told me jokingly that it
was the altitude!!  He still maintains his sense of
humor despite the hard times.  He eventually got on a
stationary bike and was able to peddle for 10 minutes.
We will return to the NIH Gym everyday and begin his
work-outs.  He has a personal trainer and PT that will
work with him on improving his body strength, walking
gait, and endurance.

Friday is his last day of chemo and then we will have
a two week break.  We will fly home on Sunday arriving
in Wichita, KS by mid-afternoon and hopefully back in
Tipton by evening.

Once again, we are really looking forward to our time
away from the hospital.  He only has to go to the
Mitchell County Hospital on Mondays for a CBC with
differential and platelets and some blood chemistry
work-up.  They fax the results to the National Cancer
Institute and then they call us later about the
results and what we need to do.

The weather is wonderful here…trees are flowering
and tulips and daffodils are everywhere. Jon’s cousin
will be arriving on a senior trip here in Washington
DC this weekend and we hope to see him.

Until then we remain strong, prayerful, and hopeful.
Blessings to you all,
Sharon

Jonathan and I arrived in Washington DC on Sunday,
March 18. We checked into the Children’s Inn at NIH
and were joined shortly with Robert,Jared, Jeremy, and
Kathryn who drove.

Monday Jonathan had several tests and a phlebotomy
work up in the morning and then we got the news that
the tumors in his lungs were stable and had not
increased since our last visit!  That is the single
best news we have had in a long time. We continue to
deal with  numerous other issues but for now the lung
mets are not growing at the rate they were several
months ago.

Jonathan is now on a five day cycle of chemo followed
by a two day rest. Tomorrow we begin another five day
cycle of chemo with more tests (DCE-MRI, CT Scans
etc.) that will occur at the end of the week.  He is
scheduled to undergo an additional lung biopsy on
Friday but it looks like that may be cancelled because
they were unable to get a viable sample from his first
lung biopsy. They wanted to compare the lung biopsy
sample before he started on the clinical trial drug
and then they were scheduled to do another biopsy
after one month to compare how the drug Topotecan was
reacting to the lung tumors. Since the first biopsy
sample was not good enough they may forgo the
additional biopsy which actually is a relief to
me…Jonathan does not have to undergo another painful
scary biopsy in which there is a chance that his lung
could collapse.

Jonathan has been experiencing only a few side effects
of the chemo…mostly fatigue.  His appetite is okay
and he is maintaining his weight.  After a loss of 43
pounds, I am glad to see him actually want to eat
again.

Last week he had a pedicure spa to help with the pain
he is still experiencing in his foot. They buffed out
the ridges that formed on his nails that were a side
effect of the chemo he had back at Mayo Clinic.  The
side effect of this new chemo is slow growing nails.
Jon said it felt good to soak his feet on hot rocks.

Last week Jonathan also saw two doctors, a physical
therapist, and a physiatrist who all helped to modify
his orthopedic foot device and taught him proper
walking techniques with his cane.  They modified his
shoe so that a device would fit correctly into it.  He
only has one pair of shoes that he can wear now but we
will eventually have to get special shoes that have
additional toe lift to accommodate his walking device.
His orthopedic device goes up the back of his leg and
straps onto his leg just under his knee.  It keeps the
bottom of his foot flat so he can walk.  He still has
foot drop and neuropathy in his leg. Jon has a lambs
wool padded device that he wears to bed at night to
keep his foot from hanging and getting stiff.  He also
continues to were TED hose to help with the swelling
that occurs when he stands or walks too much.  The
doctor thinks that a nymph node is draining into the
cavity that previously contained Jonathan’s tumor.
Jonathan sees an acupuncture doctor who is treating
him for pain.  She also inserts needles that are
suppose to boost his immune system, protect his liver
from chemo damage, and help him sleep.  It looks
strange to see all the needles protuding from his
hands,legs, and feet.   I think I need the sleepy
needles as it is hard for me to sleep at times!

We did get a phone call from the lead researcher on
Jonathan’s tumor.  He is preparing a presentation to
convince the government  and other medical backers to
continue the funding for his project of finding a cure
for aveolar soft part sarcoma.  At this point it would
be devastating if they decide to cut his funding!!

The best thing that happened this past week though was
the fact that both of Jonathan’s brothers along with
his godchild,Katie, were able to be here with him and
be his cheer squad through this round.  We were also
able to take the Metro down to DC and have lunch at
the Smithsonian Natural Science Museum one afternoon.
Of course we also saw a few dinosaurs,some interesting
rocks and minerals, and I enjoyed the Hope Diamond!

As Jonathan starts his next round of chemo this week
we hope that you keep him in your prayers.  We also
ask for extra prayers for his former high school cook,
Jan, who passed away from her battle with cancer.
Both of his high school football coaches lost a parent
recently and that saddens us all.

If all goes as planned,Robert and Jared will return to
Kansas this weekend and Jonathan and I will fly into
Lincoln,NE on April 1st. The cherry blossoms are
beginning to show here in Washington and I hope that
by next weekend we will get a spectacular view of them
as we head to the airport. We are scheduled to be back
in Washington on April 15th for another two weeks.
They say that the peak cherry blossom time is between
April 1st and April 15 - the exact time we will be
back in Kansas.

The days are long here but for Jonathan the night time
seems to be even longer as he continues to have
difficulty in sleeping for more than a few hours at a
time.

God bless all of you for your continued support and
prayers. For now we are happy for some stability in
his lung tumor growth but we still need a miracle cure
so he can return to school and carry on with his life!

Sharon

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