Jonny May

Jonathan was released from the hospital in stable
condition on Friday after 10 long days at the
Washington Hospital Center. We are spending part of
the recovery period at the home of Robert’s former
roommate at Notre Dame. We will be in the Annapolis
area after this Friday until we move to NIH.
Last Sunday Robert flew back to Kansas to take care
of chores on the farm, finish some accounting work,
and check in at the Tipton Academy where he teaches.
On January 30 I took Jonathan back to see his
orthopedic oncologist. It was Dr. Henshaw and the
vascular surgical team who were responsible for saving
Jonathan’s leg and successfully removing his primary
tumor.  At his appointment the 58 stitches in his
right leg were removed as well as every other staple
on the leg in which the tumor was resected.  Jonathan
said he thought he had a total of 99 staples. THE MOST
IMPORTANT NEWS THAT WE RECEIVED THOUGH WAS THAT ALL
THE LAB WORK ON THE MUSCLE TISSUE REMOVED AROUND THE
TUMOR CAME BACK AND ALL MARGINS WERE NEGATIVE!  It
looks like they got it all and no cancer cells escaped
from this site.
Although mobility is still a big challenge,
Jonathan is able to move about several times a day
once I strap him into his leg brace and foot device.
He uses crutches and is slowly able to manage going up
and down the stairs once a day.
On February 8 Jonathan returns to Dr. Henshaw to
have the remainder of his stitches and staples
removed.   Until then we cannot leave the area so that
is why we are staying close by in Annapolis. On
February 11 we will move to NIH where Jon will begin
testing for his clinical trial.  On February 12 he
begins his schedule with an MRI, CT scans, X-rays, and
blood work.  He will also be having a CT guided lung
biopsy later on that week. As soon as the test results
are in he will begin taking a drug called Topotecan.
The drug will be administered every day for 5 days and
then he will have 2 days off. Once the protocol is
underway we will be able to return to Kansas. However,
he will have to return to Bethesda and the National
Cancer Institute every week to be monitored.  We are
not sure how long this regiment will continue.
Jonathan continues to get a little stronger each
day and his spirits soar when he hears from family and
friends. This continues to be a long and heart
breaking journey but one that Jonathan is determined
to win.
We would like to thank everyone involved in his
recovery in any way.  Your support is felt here in
Washington DC. It has been amazing to hear from people
involved in his health care such as the lab workers
from Mitchell County Hospital and researchers from the
National Cancer Institute, churches from around the
country, prayer groups, towns around Kansas,
relatives, the Notre Dame Alumni Club in the DC area,
friends from work, and special people from our
community back in Kansas.  All of you are making a
difference in Jonathan’s ability to continue his
battle against cancer. We know that Jonathan is
destined to tell an amazing story of his journey to
wellness as he becomes a survivor of this very rare
cancer.
May God bless each and everyone of you.
Sharon and Robert May

Wow…what a difference a day makes in Jon’s
recovery! With difficulty and a walker he was able to
get out of bed and walk to a nearby chair with minimal
assistance. His pain level has dropped from a 9 or 10
to a 5 or 6.  Of course the increase in other pain
medicine and the decrease of morphine is making a
difference.
It looks like he will get out of here on Friday.
That will mark 10 long days in this hospital so I
think he is ready for a change of scenery! He asked
for a Pizza Hut pizza tonight to avoid his hospital
dinner.  He is finally able to eat regular food and is
off the yellow jello diet.
We are not sure where we will stay to rehab but we
do know that Jon will need to see his doctors on Jan.
30 and if strong enough he will try to come home for a
few days.  We will have the doctor back in Kansas
remove the stitches.
Robert may try to fly home for a few days to check
on the farm.  We have started having baby calves so I
think he wants to get everything in order back at the
ranch.  I hope to be able to manage Jonathan as he
still needs help with mobility, dressing, etc.  He has
been given some interesting devices to help him with
daily living tasks and he will be dismissed with a
walker or crutches.
Because his legs have been wrapped up with bandages
and a leg brace he has constantly been hot.  Sudden
hot flashes occur constantly with him so finally he
can empathize with mom!  He will no longer make fun of
me for running the air conditioner in January!
Everything is looking up and we appreciate your
support and prayers.  They are finally working.  Every
time I pass the little chapel here at the hospital (at
least 12 times a day) I stop in and request the next
little favor I need (like Jonathan to be able to
wiggle his big toe or for him to find something to
smile about) and most importantly I thank God for
bringing us to the next day and showing Jon
improvement every day.

In friendship and prayer,
Sharon

(Jeremy) I got back from DC early (2am) Monday morning. Jon was doing a lot better when I last saw him. I helped the Doc change his dressings and his leg looked a lot better than I expected. I know that some of what mom says below doesn’t look as good as we thought it might, but I believe Jon will prove them all wrong. He’s done well so far and I think if they say it’ll take 4 months to recover he will do it in 2 and be upset that he didn’t do it in 1. Anyway mom sent this email out yesterday:

Today was a day of downs and ups. Early morning
news from the resident left us in tears as she told
Jon the nerve in his leg that they removed during
surgery seems to affect his ability to keep his foot
flat and draw his toes towards his face…all
necessary skills needed to walk without assistance.
We talked about wearing a brace on the flat under area
of his foot and then having it extend up to his ankle.
He would be using high top shoes. She mentioned that
he might not be able to bend his knee enough to walk
without a brace on it, too. After she left the room
Jonathan just seemed devasted and said to me that he
wanted to play sports again and walk like a normal
person…after all, sports was his favorite hobby.
After a visit from his occupational therapist he
again was feeling distraught because it was so painful
just to even stand up. He cannnot put weight down on
his left leg but even his right leg hurts from where
they removed veins. He did take a few steps though
with a walker and was mostly able to support himself
with the use of his strong arms and right leg. We
cheered when he took his first steps!
Later in the morning his orthopedic surgeon stopped
by to say that they only removed several branches of
the main nerve and that there is a possiblity that
after the swelling goes down his ability to pull his
foot up will return. It may take months before we
know if the removed nerve affects his sensory ability
or his motor function. Of course we know that losing
feeling in your knee and thigh is something that you
can live with but we pray that it does not affect his
motor functions.
This evening he has been having a blood
transfusion, a dose of antibiotics, and is taking
continuous pain meds. He tried to dangle his foot
over the edge of the bed but due to extreme pain he
only lasted 2 minutes. It is only going to get better
as his leg begins to heal.
He had an interesting afternoon with visitors from
the National Cancer Institute (his researcher) and his
daughter who also has Aveolar Soft Part Sarcoma. A
friend from Notre Dame stopped by and several people
from Tipton, Kansas came for a visit. How wonderful
it was for Jon to see other people besides Mom and
Dad!
Jonathan’s cancer journey has come a long way since
June. After his cancer diagnosis we all felt as though
we had a gaping hole in our spirit as we tried to face
the painful realities of the struggle that stood
before all of us. Although we have tried to bring a
sense of security and stability to Jon’s life, I just
can’t imagine how he must feel. We want so much to
restore his sense of well-being physically,
emotionally, and spiritually. We know now that his
“new normal” has a purpose that is moving him through
this healing process. He longs for the days when he
actually felt good but is able to look for the moments
now when his spirits are lifted instead. He now knows
how the painful realities of cancer can become a door
to experience new faith, hope, and love.
Jon will have three more days in the hospital of
physical and occupational therapy, a few weeks of
additional therapy to strengthen his body and then we
will proceed to the National Cancer Institute to get
started on a clinical trial.
We would like to thank everyone for your cheerful
cards and calls. Truly laughter is one of the best
medicines for Jon right now. The comfort of your
friendship and the healing power of your loving
thoughts and prayers are felt here at the Washington
Hospital Center. We have just experienced the first of
many miracles for Jon and it is your support that
helps.
God Bless,
Sharon

Jon is out of the ICU and has his own room. His updated address is as follows:
3NW room 8
Washington Hospital Center
110 Irving St. NW
Washington DC 20010

I appologize for not posting this sooner as he has been in the room for most of the afternoon/evening, but he’s had a string of visitors. One of the visitors is the Doctor that is doing medical research with Jon’s tumor. He said it was over 7 inches in diamter and was a solid, spherical mass. He also said he has never heard of this type of tumor being removed at this size. It was also a good opportunity for him to take part in a resection of a tumor as most of the time he only has them shipped to him. This type of cancer is so rare and he doesn’t often get the chance to “see one in the field”. He already has parts of the tumor injected into over 35 mice in the search for a cure, not only for Jon, but for the other folks who have this type of cancer. Please direct some prayers to his efforts as they offer the best hope for Jon, and the researcher’s daughter who also has this type of cancer.

I’m flying back to South Bend tomorrow and I’ll try to update at least once a day as Jon goes through the rest of his recovery. He may have a chance to post again in the coming week or so, depending on how he is doing. God bless you all and thank you for your continued support and prayers.

Hey all I made it to DC ok and have been spending some time with the parents and Jon. He’s doing a bit better now and could have been out of the ICU this afternoon if they had open beds on the floor that he is heading to. They may move him to a different floor tonight if they need the ICU space, but so far (knock on wood) they have some space and it looks like he’ll be have the extra attention tonight.

Jon doesn’t look too bad all things considered, but he is having trouble holding anything down. In fact he’s tossed up a lot of bile over the last day or so. The pain meds make him feel sick to his stomach, but not hitting the pain button also makes him feel sick. So he’s been trying to balance it as best he can.

His biggest issue right now is rest. He hasn’t slept for more than 5 to 10 minutes at a stretch and not a lot of the since Wed. morning. I’m not sure if mom and dad have slept too much either. I’m going to try to drag them off to bed one at a time tonight and make them sleep. Internet access here is spotty, but I’ll do my best to update y’all when I can.

He’ll most likely be moved to his final room tomorrow and I’ll post that info as soon as I can.

Thank you all for the thoughts and prayers.

Yesterday we reported for surgery at 6am and Jon was in the OR a little before 10:00. By mid afternoon we got word that they successfully resected his tumor and the artificial graft of his femoral artery was in place. Just when they were returning him to the Recovery Room they lost the pulse on his leg so they rushed him back in to the OR and opened him up again. He had a blood clot in his artificial artery. It took them several more hours to take care of the clot and repair his leg. He returned to the recovery room and we went in an hour later for only a minute to say hi and let him know that they had saved his leg. We left only briefly to get something to eat when we got an urgent call to return to the recovery area. They had lost a pulse again on him and they were taking him back into the OR. We got to see him for about 10 minutes…he could not talk because he was on a breathing machine but tears squeezed out of his eyes, he mouthed “I love you”, and he wrote on a pad that he could not feel his leg and he asked if he was going to be okay. He was really scared!! He was back in the operating room for hours and they had to remove the artificial artery and replace it with one from his other leg. That incision runs the entire length of the thigh in his good leg. Around 11:00pm they took him to ICU where they put him into a drug induced coma-like state. He is still in ICU, is on a breathing machine, and has a NG tube running down to his stomach. We counted over 20 tubes coming or going out of his body. It was so frightening to see him so swollen and in pain. I didn’t even recognize him at first. As of noon today he still had sufficient blood flow to his foot as measured by a dopplar system. It looks like they have a chance to save his leg. We have no idea how long he will be in ICU but as soon as he can breathe on his own and the circulation in his leg improves they will move him to his own room. He is currently having a problem with his lungs and his stomach is bloated.

He lost a lot of blood. During his first surgery they used 7 units of blood and I don’t know how many they used for surgery #2 or #3. During the night he got two units of blood and this morning he has had 1 unit already.

When they woke him up briefly he managed to write on a pad of paper placed under his hand and pencil wedged between his fingers: MY CHIN ITCHES! After a few scratches by mom he was relieved and fell back asleep.

They said the next 12 hours would be critical and he would not be out of the woods for 2 or 3 more days.

More than ever he needs your prayers. A priest stopped by and gave him Annointing of the Sick. Just before surgery Jon attended Mass in the little chapel here. This morning when the priest visited him I saw his lips moving as he was saying the Our Father prayer along with the priest. His eyes were closed but he knew what was going on. Jon remains very scared and in critical condition but he is strong and determined to get through this.

The tears and prayers are flowing here in Washington DC.
God bless all of you for your support,
Sharon

Jon had an extra 3 hours of surgery last night to repair his femoral artery, they grafted from his right leg to help repair it and as of 11 last night he is still in critical condition, but heading to the ICU where he’ll be recovering for the next day or two, before being switched to a regular room for another 2 weeks of recovery. The good news is that it looks like they’ve been able to keep his circulation up and color was returning to his foot. So it looks like his leg will be ok, but the next 4 or 5 hours will get him out of the woods for this section.

He was awake briefly between surgeries and seemed to be in a good deal of pain and to be scared since the feeling/circulation was dropping in his leg. I know it’s taking toll on our parents who stayed by his side as much as possible since early yesterday morning.

I appologize for not posting an update about him being out of the OR last night, but after I found out I just wanted to say some prayers and get some sleep.

Thank you to all who have hoped and prayed with us through this. I know that it helped.

Just heard from Mom: Jon is out of the OR and heading to the ICU. The surgery was a success and they were able to remove the tumor. They said it was “much bigger than a softball”, but I don’t know if mom or dad got exact numbers on size or weight. He went through 7 units of blood. Thank you to all of you blood donors out there. (I must make a mental note to donate 7 units this year to help repay the debt.) He will be in the ICU until sometime tomorrow morning. He is on a ventilator right now to help keep his oxygen and blood levels up in his leg. It is expected that he’ll start to come out of it later tonight, but probably won’t be able to talk much until at least tomorrow morning.

I feel I must tell a story here, please bear with me as it does relate to today’s events. The grotto on the campus of Notre Dame is a very special place for me. I visited it frequently as a student during the hard times of being away from family or having troubles with classes or any of the other sort of problems your average college student has. It is the place where I propsed to my wife, prayed for the souls of family who have passed, and a continual source of peace and comfort. Around 3 today I felt the strong urge to visit the grotto and pray a rosary.

Later, I found out from mom that Jon was supposed to be out of surgery around 3, but they had to keep him in the OR when he lost his pulse in his foot. This was bad since they had to graft part of his femoral artery and the loss of circulation meant that there was a problem. They were able to go in and remove or break up a clot near or in the graft. They were able to get him out and into the ICU around 4. So as near as I can tell I was compelled to visit the grotto either shortly before or during this tense part of this operation.

After this I cannot doubt the power of prayer, so I would like to say thank you to all who have prayed for Jon and our family.

Talked with Mom a bit this morning. Jon is scheduled to be in the OR for 6 to 8 hours or so. They orginally didn’t think they’d need all of that time, but they got some bad news this morning. The images from last night’s test indicate that they will probably need to take some of his femoral artery and put a graft in. While this isn’t that unusual of a procedure it does carry a higher risk of the loss of of the artery, which would cause the loss of blood flow to a large portion of his leg. Which would mean he stands a higher risk of losing his leg now. This must have been hard for Jon to hear just minutes before he went in. I can’t imagine how scared he must have been going in and knowing there is a small chance your leg might not be there when you wake up. I was scared when I had my knee surgeries done and they were nothing compared to this.

Jon should be out sometime mid-to-late afternoon. I’ll try to post an update again when I hear more. A candle burns at the grotto for him and I think I’ll probably visit again this afternoon.

I just got the following address from Mom:

Washington Hospital Center
110 Irving St. NW
Washington DC 20010

I think this will be Jon’s address while he is going through surgery and rehab in DC. I’ll post updated info as it comes available. I think you might need a room number for that address and once he is out of surgery I’ll post that as well.

I want to thank everybody for your thoughts and prayers for Jon. I’ll be heading down to the grotto tomorrow to light a candle and say a rosary for him. As soon as I hear more on his surgery, I’ll post it.