Jonny May

I wrote this for Jon, but I didn’t have the heart to read it for the wake. Luckily our high school English teacher/drama coach was able to read it for me.

To my best friend Jon,
The earliest memories I have are from the day that mom went into the hospital to have you. Granny had just walked in the door as mom and dad were heading out. It was my first chance of being man around the farm: so I went and got stuck climbing the woodpile. It’s the only time I remember not having you in my life.

Throughout our years growing up you were my constant friend, competitor, playmate, and companion. The farm was our playing ground. Out doors it was one on one football, baseball, or basketball, bale tag, slingshotting rabbits, anny anny over, or just running around. Inside the house it was lego wars, transformers, GI Joe, or torturing Jared. Besides all of that there was responsibilities like 4-H projects, homework, feeding the animals, fixing things, or cleaning up after ourselves.

One of the hardest things about going off to college was not having you along to share it with. Your year at Bowling Green was one of the best in my life because I not only was I starting a new life with my wife that year, I also got to share so much more of my life at Notre Dame with you. When you moved up to Toledo, it finally felt like I had more of home up there with me.

When you were first diagnosed, I knew that you would win, you were too competitive for it to be any other way. Through all of the pain, treatments , and travel you always seemed stronger to me. All of the doctors dire predictions were always going to be wrong because you were the strongest, bravest person alive.

Through it all you were always so self less. You worried about the rest of your family and Brandy. You wanted to make sure more research was being done so others would not have to travel the same hard path that you had to. To me this is your legacy. To put love one’s first, live life to it’s last full measure, and to never, never, never give up.

You didn’t lose your battle with cancer because everyone you touched is still fighting for you and will see this battle through. Death is a coward and had to sneak up on you while you were sleeping. Worry not Jon you’ll always be with my family and I’ll raise my kids as our parents raised us. If I can ever be half the man you were, I’ll consider it a life well lived.

Farewell my friend, may flights of angels sing you to you rest.

Jeremy

Jonathan May passed away in the loving arms of his wife and family at Promise Regional Hospital in Hutchison, KS on March 24, 2009. Jon was born on October 20, 1981 in Beloit, KS.

Jonathan grew up on the family’s farm just north of Tipton, KS. He graduated from Tipton High School in 2000. While in high school he was a member and officer in the National Honor Society and was the Wendy’s High School Heisman Award winner for the state of Kansas. He was a four-sport letterman and earned a medal at state golf and was selected to play in post-season All-Star games in both football and basketball. He was captain of the Scholar Quiz Bowl Team that went to State and earned numerous gold medals at state forensics competitions. He was Senior Class President and won the National Wild Turkey Federation’s local, state, and national scholarship.

Jonathan attended Fort Hays State University where he graduated with a degree in Geosciences with a Leadership Certificate. While at FHSU he played on the Varsity Baseball Team, was on the Dean’s List, and interned with the Kansas Department of Health and Environment. After graduation Jon attended the Medical University of Ohio in Toledo, OH. He graduated with a Master’s Degree in Public Health Epidemiology in December of 2008.

Jon was an avid outdoorsman. Jon was always on the lookout for prime hunting and fishing areas and loved to spend time with his family and friends outdoors. He enjoyed the camaraderie and banter of a good fish story or a good hunt. At any family gathering he would be found in the center of a game of cards and more times than not he would be winning.

In 2006 Jon was diagnosed with Alveolar Soft Part Sarcoma Cancer. Through Jon’s struggle he traveled to 15 hospitals in 9 states. He also had the privilege of having an audience with Pope Benedict XVI on a pilgrimage to Europe, met with the New York Yankees, was on the sidelines for a Notre Dame football game, and made friends everywhere he went.

Jonathan’s dream of having a family of his own was realized when he met the love of his life in August 2007. They were united in marriage on October 18th, 2008 on the campus of Notre Dame. Through their abiding love in each other, they were able to fight through the pain and hardship that came with his disease. The strength they found in each other’s arms is an inspiration to all. Although their time together was short, the love they shared allowed them both to experience life beyond their years.

Jonathan’s commanding legacy lives in the hearts of thousands of people he touched with his strength and grace. The field of oncology has been transformed by his energy, dedication, research, and commitment to helping others. What happens now to the medical world, Jon’s family and friends depends on what we do with what he has left for us. Pass the kindness forward, fight each battle with grace and dignity and never, never, never give up.

In lieu of flowers the family is asking that money be donated to the following funds that have been established in Jonathan’s honor: The Jonathan May Memorial Scholarship Fund, The Jonathan May ASPS Cancer Research Foundation, or Tipton Catholic High School.

For further information go to: http://www.mcdonaldrobertsfuneralservice.com/index.cfm

It is with a heavy heart that I am posting that Jon didn’t wake up this morning.  His funeral will be on Saturday at St. Bonificace church in Tipton, KS.

I turned 30 today and I suppose that is a time for reflection and I can’t help the fact that my thoughts, prayers, and reflections are all related to Jon today. Part of this is due to the fact that I’m sure that he is certain to remind me that I’m an old goat and that he can probably still kick my flabby backside. The other part is that Jon is back in the hospital, with his ongoing struggle with fear, hope, and faith. My reflections today center on what Jon has taught me over the years about fear, hope, and faith.

On fear: Jon has always been a bit fearless. That isn’t to say that he is reckless and flaunts this fact. I remember the football two-a-days my senior year of high school, which was also Jon’s freshman year. During a one on one tackling drill he and I came up next in line to go against each other. I was pushing a good 225-230lbs that year and was coming off knee surgery and want to prove that I still could strike fear into the would be tacklers of all shapes and sizes. Here I was matched up against my little brother, I had a good 40-50lbs, 3 years of experience, and plenty of motivation on him. On the football field I was used to seeing fear in a would-be-tacklers eyes, I’d run over more than a few people before. Yet, Jon showed no fear and bore right on in. While his tackle wouldn’t go down as one of the prettiest in history, he still brought me down one on one, which not a lot of people could say on our team or many others that year.
Over the last 3 years Jon has been in and out of at least 13 hospitals in 6 or 7 states (including the District of Columbia, I think), I’m sure mom will probably correct me with the proper count. Despite all of this Jon has rarely shown fear that I have seen. That is not to say that he hasn’t been scared, I know he has been and I know he has been afraid, it’s just that he doesn’t show it. I suspect that a good bit of that is being brave and his way to help the rest of us be stronger. I know that Jon is probably scared and afraid now. I know that he is feeling his strength wain. I also know that he has strength and the will power to make it through anything, even this.

On hope & faith: Here I think I should make sure I separate out/define what I mean here. Hope is a good thing, it is the feeling that there is something good to look forward to. Faith is a rock solid belief that something is or will be. Sometimes it is easy to tell the difference between the two and sometimes it’s terribly difficult. We have all hoped that the next visit or next treatment will be the answer to our prayers and while no miracle has happened yet, I think we all still have faith that one will happen yet. I know Jon has had many hopes for these past few years and while some of them (ND football winning an National Championship), quite a few others (meeting the pope, being on the field @ ND stadium, meeting the Yankees, and visiting Europe) have come to pass. Jon has shown that having hopes/dreams can be a great thing and that despite all of the odds you can realize that hope is still a great thing.

Jon’s faith (in God, himself, and in his destiny) I’m sure has been tested so many times and yet his patience, belief, and spirit has flourished into something that is an inspiration to me and I believe to many of you. I’ve heard several of the dire predictions from some of the doctors that Jon has worked with and I know that Jon has probably heard many more. I wouldn’t say they are bad doctors or that they don’t know what they are talking about, but certainly they didn’t know Jonny like we do. Jon has beat many odds great and small, I’ve come never to doubt in his ability or faith in doing so again.

I think I would be remiss now not to mention something (or more appropriately someone) who has done more to foster this sense of hope and faith in Jon. I know that one of the things that Jon did worry about early on in all of this was that he would have a hard time dating or finding “the one” with the monster of cancer hanging over him. Yet despite that the Lord has blessed Jon with Brandy. I don’t think you could find a better way to describe her tireless devotion to Jonny other than angelic. It took a good amount of faith and hope (and some fearlessness) for Jon to ask her to be his bride a little over a year ago and it took a whole lot of it for both of them as they said their vows 5 months ago. Their love is an inspiration that leaves me in awe.

Fear tells me that I should be spending my 30th birthday at Jonny’s bedside in the hospital. If I have learned anything from him it is that I should not be afraid and that I should not count him out and that I should continue to hope for the miracle and continue to keep my faith and to pray that I may live more as he has lived. I will have that hope and pray that Jon may live well past 30 and be there to give me grief about being an old man well into my “over-the-hill” years.

Please continue to pray for Jon as I know that tonight he is facing fear with hope and faith and love.

I’ve been wanting to post some pictures and some of my own thought’s on Jon’s graduation (and the wedding for that matter, but that will continue to wait).

Jon has been a hero of mine for many years. Even when we were little kids, I knew he is better than I am. I know I pushed him (and picked on him) a bit, but really he has always been smarter, faster, and stronger than I was. I know it didn’t always show because I had the advantage of age (and size). I have always been proud of him. He did better in every sport than I did and I was so proud of what he could accomplish on the field. In the classroom, it didn’t take him long to graduate from college and get started in surpassing me there.

I hear a lot of people tell me how amazed they are at Jon’s physical and mental toughness in this battle. In some ways I am not surprised, because I’ve grown up knowing that Jon has this strength in him. That doesn’t mean I am not in awe of him.

I know I wouldn’t be half the man I am today, if it weren’t for my younger brother pushing me to be better and I would consider it quite an accomplishment if I could be half the man he is.

Here are a couple of pictures. I don’t know if there are better ones out there, because honestly I don’ know if there was a dry eye in the family.

God bless you all and God bless Jon and Brandy,

–Jeremy

Jon is the handsome guy on the left. The other guy is Jeter, who I’m told plays baseball or something.

Yea it’s a little blurry, but it’s still a guy who could be on the cover of GQ (and A-Rod).

Jon meets the former Geico caveman (aka Mr. Damon)

All joking aside, the Yankees (both the players and the organization) were great to our family. Jon was able to live out a sports fan’s dream of being able to sit in the Yankee’s dugout and talk with the players. On behalf of my family I would like to thank everyone who helped make this possible for Jon.

Jon should be back in Ohio later today. I’m sure when he is feeling up to it he’ll have some more on his travels and updates on his next set of treatment.

Dad and Jared came by South Bend over the weekend and picked up Jeremy and Kathryn. We all drove to NIH and met Mom and Jon here. We’re all spending a few days with Jon while he goes through the next round of chemo. He’s had a bunch of tests today (and a lot of waiting around for said tests). We’re all glad to be together for a few days and Kathryn is enjoying her time with her uncles and grandparents.

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