Jonny May

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

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.

Hello to all of you on this opening day of the NCAA hoops tourney. I suspect that some of you have skipped work or are having “meetings” at a sports bar like I did a year ago. Notre Dame did not get a favorable seed or location in my mind but Kansas State really got the shaft along with ‘Cuse. As for me, not a lot has changed. I have shedded the crutches though and use a cane for walking. I suspect it may be awhile before I get full motion back in my foot and more sensation back in my leg. I don’t know which is more annoying. Basically my whole knee has no feeling on the surface of the skin (along with my shin) and it is very bothersome. I still have some burning feelings in my foot, but it isn’t as bad as a couple of weeks ago. I’m sleeping slightly better but have some trouble yet. I’ve slowed down taking pain-killers but I want to stop completely soon, mainly I just take a dose before bed and another during the night if I have trouble sleeping. We leave Sunday to go back to the D.C. area for another round of treatment. I will have a CT scan so hopefully it’ll show shrinking tumors or no growth. Thank you for your continued thoughts and prayers.

Hi everyone. Mom and I flew home last Friday. It’s good to be back. I’ve been feeling okay lately, still have some nerve pain in my left foot and I still can’t lift it up off of the ground (it’s called foot drop) so I still have to wear a boot or orthodic device. It makes sleeping tough (along with the pain…it’s not too bad, just annoying) because it was recommended that I wear the boot when I go to bed. The boot is more comfortable when I’m just sitting around, but the orthodic makes it much easier to walk. I can walk around a bit without crutches but it’s a little difficult as I’m still not comfortable putting full weight on my left leg. I also use a cane, and that’s what I’ll probably use when I actually go out and socialize. Additionally, have no feeling on the surface of half of my leg.

As far as chemo goes, I’m now on a two week break. I seem to be tolerating it well. I am tired more lately and have developed a few sores in my mouth, but those seem to be the only side effects (maybe dry mouth and dry eyes too). I’ll know if my blood counts have dropped today as I have a blood test (CBC) this afternoon. I suspect they have dropped a little and that is why I’m a bit more tired, but it could be that I just can’t sleep well at night. What I would give for just 4+ hours of uninterrupted sleep (sheesh, you’d think I would have a baby to take care of or something). I have found that getting a decent night’s sleep is one of many things that I have taken for granted. It has been difficult for me to shower and bathe, and I didn’t even get to take a real shower for 3 weeks post surgery. I have no social time, I wish I could just go out with friends and have a few beers once in awhile like I normally did before. Hell, I haven’t been on what I’d call a date for like 10 months. I hardly see women my age lately let alone socialize with any…it’s terrible. Walking and doing seemingly simple tasks has also been tough. It’s frustrating. It is very upsetting to me that I have to depend on my parents when I should be in the prime of my life. (They say that men peak physically at 24 - which was my age when I was diagnosed).

It’s not all bad though. I am so glad that I had the surgery. I’m eating better and haven’t had the bouts of fevers and so forth like I had before. Looking back at myself before surgery, I think now that I was seriously dying. I was wasting away with losing weight and that tumor getting larger, I don’t know how things would have turned out if it didn’t happen. I wouldn’t have my leg at best in the near future if I couldn’t have found a doctor that was willing to do the surgery.

I will be returning to D.C. on the 18th for follow-up and continued chemotherapy. I anticipate that I’ll be there for a couple of weeks. Thank you all for your continued thoughts and prayers.