Jonny May

Greetings everyone. I hope you aren’t all too stuffed (or shopped out). I had a nice weekend and definitely ate my fill. Things are holding steady with me. Still having some issues with weight, but hopefully that’s turning around as my appetite is doing well. I just took my last dose for the current cycle of Sutent (my latest chemo). I’m now on a 2-week break and will have some very, very important scans next week to determine if I stay on the drug or not. I have 2 more days left of radiation on my skull. Another good sign is that I’m slowly cutting back on the pain-killers. From my standpoint, it seems that both therapies are going to work and hopefully I’ll get confirmation on that next week.

We are keeping busy by contemplating a move to warmer climate and by trying to squeeze in my graduation. I will walk on Dec. 20 here in Toledo and will receive my MPH degree (Master of Public Health)! Another major life-goal reached that I had my doubts on, but thanks to my supporters (YOU!) we found a way to get it done.

My schedule for today includes a home health nurse visit, hydrotherapy, and radiation at Flower Hospital this evening. I sure could use some prayers for favorable results next week. God Bless you all and thanks for your support and, as always, remember that there is plenty to be thankful for!

Hello everyone. The wedding (and birthday) were great, thank you all so much for gifts, cards, and even words of encouragement. It all helps a great deal. Brandy looked absolutely fantastic! She also wants to convey a deep and sincere thanks to those who helped her become a beautiful bride. We are enjoying the married life.

As for my health, not much has changed. I am still on Sutent and the doctor seems to think I am seeing benefits from it (although not for the bone problems). We won’t get official word until my next scan which should take place in a few weeks. I have started another round of radiation on the back of my head. These 2 spots are a bit more dense then the previous ones so they have to up the strength of radiation that I am receiving. The good thing is that it should not have any harsh side effects. However, I am expected to have hair-loss (which could be permanent) in that area. Looks like I may have to start thinking about Rogaine a few years earlier than expected…and my wardrobe of baseball caps.

Best regards and thoughtful prayers to our support team: family, friends, doctors, nurses, researchers, and other specialists who help with my overall well-being. God Bless!

Hi all, sorry but I’ve been very busy lately preparing for the wedding this weekend and taking care of myself. I started a new chemo treatment and just finished up with another round of radiation to my left shoulder and left leg. The chemo drug is called Sutent and apparently has shown results in some ASPS patients. Hopefully it will for me too. This time it’s an oral pill. It does come with some side-effects since my doctor has me on a rather large dose. I have had some bouts with vomiting and a poor appetite. I take the drug for 28 days then I get a much-needed 14 day break. I will have scans at the end of the second cycle to see if my situation has improved or not. I had a bone scan a little while ago and it confirmed the presence of bone tumors that we already knew about plus 1 or 2 other areas which thankfully aren’t as much of a concern at the moment. The bad thing is that these things are very painful so I’m on plenty of drugs (which I hate) to alleviate the pain.

Well, thank you all for the well-wishes for my wedding day. I have almost forgot completely about my birthday on Monday. We appreciate the prayers and cards too! God Bless

I thought I’d throw up a quick update before I head to South Bend for the game. It’s been quite a last 2 weeks for me. The actual surgery went well, however, my lungs had trouble “waking up” from the anesthesia. It put me in the surgical intensive care unit for 9 days. So you can imagine I was pretty frustrated and pretty scared. I really struggled with breathing at times and we really had to work to keep my O2 levels from getting to low. It took a long time to get over. I got home on Sunday and was starting to feel better when I developed some pretty serious pain in my left shoulder (there is a lesion in the bone). It was a very rough time as it was the most pain I’ve been in quite some time. We had to once again redo some pain meds and after a long couple of days, got it under control. The leg is actually coming along pretty well. I’m still a bit gimpy but it’s on the mend. My lungs are still recuperating. I am doing much better than I was though, hopefully I can get off of O2 24/7. Well, I’d write more but we’re on the go. I’ll post again soon.

Thank you so much for the prayers, cards, and well-wishes!!

Will it ever stop? I am scheduled for surgery on Friday which should not be easy or fun. Now we’ve discovered a rather problematic lesion in my left femur that will need stabilization so it won’t break. We were advised to get this done sooner rather than later. The actual procedure from the surgeon’s standpoint (same guy who did my shoulder) should be easier than the last one, however, it will be more painful for me. A rather large titanium rod will be placed in the bone. I’m not sure when I’ll be back on my feet yet. Hopefully we’ll know an estimate soon (it shouldn’t be too long).

Lately I just finished up another radiation block that included 3 places. One on the top of my head slightly to the left, another on my cheek bone, and on my operated-on shoulder. It was a little more involved than my last bit of radiation, but I got through it just fine.

We are desperately awaiting the moment I can return to receiving more systematic care. I need to get on another clinical trial ASAP. The way I see things now is kind of like putting out wildfires that keep popping up, but we can’t afford to do that for much longer. So until we finish all of the surgeries (still have another area of concern as my original tumor has returned in the soft tissue of my left leg) and radiations, we can’t move on with finding an appropriate trial. So we hope to have slow or no growth in other tumors while we get the immediate problem ones under control.

Thank you all for your continued support, you’ve all been so great to me and my family. Hopefully we can find a way to juggle all of these health issues and plan a wedding at the same time, it sure will be a challenge.

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.

We’ve discovered 2 more tumors in my skull that will need to be treated. They also decided to radiate my arm to make sure they got everything. I have a preliminary appointment next Wednesday, then we’ll get started the following week. It sounds like I can have all 3 spots done at once so that will make things easier. Also on the horizon will be a bone scan to find out if there are other areas we need to treat. Metastasis to the bone is tricky business. It may be awhile (a month or so) before I can start another trial, which I really need. I am hanging in there although it gets a little harder each time. Thank you all for motivating me to fight. I will never stop.

I will take some time out this weekend for a little fun. We are heading to NYC to catch a Mets and Yankees game. This has been a dream of mine for some time, and it looks like I’ll be able to make it happen! It will be a tiring week, because as soon as I’m back from that, I’ll be leaving to head back to Tipton, KS (it will be a very quick trip) for the Church Picnic. Hopefully it all works out.

God Bless you all.

Recovery has been slow but sure. I can do a little more with my arm all the time. The pain has been, well, a pain. I can control it but other side effects come with it. It is difficult to manage all of the medications and their timing. The incision itself looks pretty good. I have 23 staples in my shoulder starting close to my armpit that goes vertical. Around the incision is not really that sore (it’s actually quite itchy at this point). It’s the part around the deltoid muscle that is sore to the touch. It all gets very stiff too, but if I do my exercises, it’s not too bad. The surgeon wanted me to ditch the sling so I don’t get stiff and try to re-establish a range of motion.

I am holding up alright, but I will need to get a full bone scan or bone density test soon. I am afraid there could be other areas we need to get treated right away. Other bad news is that I will not be able to continue the promising trial that I was on. However, from what I understand there are a couple more options that are drugs very similar to that one, just made by a different company. I will have to wait a few weeks as I heal from surgery to get started. I get my stitches out Monday. I am not sure of what my full capabilities will be once healed. Hopefully some bone grows around the cement-filled area for stability. At the very least I am eating better now.

Thank you all very much once again for supporting me and my family. Please keep it up. God Bless you all.

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.