Jonny May

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.

Sorry this will be short because it’s a little harder to type with my right arm in a sling. Unfortunately (for those of you who haven’t heard from my Mom), we discovered that there is a rather large tumor located in the bone in my right arm near the shoulder. I am scheduled for surgery Friday. I could really use prayers. The surgeon is trying a procedure that will hopefully save most of my mobility, but it may not work. If that happens I will have a metal prosthesis for the top of my humorous and more limited mobility (which would really stink since I’m right-handed). I will be admitted Thursday for another test, then will have surgery Friday (scheduled for 1:30, but they will try to get me in earlier). We’ll let you know more when we can.
Thank you all for your support!

My last 3 radiation treatments are this week. I hope you all had a great holiday weekend! I spent some time with Brandy’s family and we had a good time (although we’re worn out). I got some good news this last week when I got the call that I will be able to proceed in the clinical trial next week. I felt like things were improving on the trial so I am anxious to get started again.

I want to thank you all for the kind words. I know that it may seem like I am handling everything great, but in reality that is not always the case. I do occasionally get down and it sometimes depresses me when I think on times when I was a much stronger and much healthier man. Less than 3 years ago I was in excellent shape. I could dunk a basketball (after many, many tries) occasionally. I don’t even think I could jump high enough to touch the net now. I had no problem running a mile, now I don’t know if I could walk one even with oxygen.

The person who deserves most of the credit (other than family and friends) is Brandy. She’s always there to pick me up. She has made so many sacrifices on my behalf. She is a critical piece in keeping me sane. I am truly blessed to have found a woman that is every bit as strong (if not stronger) than I am. I am hoping that many of you can help celebrate our wedding that we are planning on having sometime, somewhere in May of 2009 (sorry, that’s all we’ve got so far).

Thanks for your continued prayers!