Updates of the past week and a half

I have some updates to post and I know it's been a while since the last post so bear with me! I received lots of updates from Tiff in an email so all of the following news is what she sent to me.

"Review of the Interleukin II therapy - Jon was scheduled to have 14 doses of IL-2 while at the hospital and the doctors and nurses, usually say "the more the better" when it comes to how many doses, but your body is what tells them the "stopping point" (since it is different for everyone) and when it is too dangerous to continue. Jon's body gave out after the 7th dose. He had a major gallbladder attack so they were not able to complete anymore doses. Luckily they did not have to remove his gallbladder, they just gave us a very expensive antibiotic (5 pills at $32 a pill after insurance). Also Jon's bilirubin level was at a 7 when normally in your body its like a 0.1, so he was very jaundiced and that was another indicator of his body's stop point.

Dr. Grossman, our specialist and oncologist, said that during our second IL-2 (which is this Sunday Dec. 6th) if anything like his gallbladder attack happens again this time around that maybe removal of his gallbladder or putting some type of shunt into the gallbladder to drain off the toxins might be our option so we can continue with the treatment as much as possible.

Overview of this past week and a half at home -
Jon has been very tired still and is sleeping about 18-20 hours per day. He lost all of the excesses fluid all over his body every quickly (within 4 days) after discharge, but had a hard time losing the extra fluid in his lungs and had to go on another antibiotic to help aid his body in recovery and prevent Pneumonia. (Oh great, more money in antibiotics! Luckily the good old insurance covered a bit more.) He has not had an appetite at all and has a hard time eating (lots of nausea and vomiting). When we first went to Huntsman on Nov. 1st Jon weighted 164 lb. and now he is down to 141 lb. He really can not afford to lose anymore, and that is what the Doctors say also, not just his wife! If you know Jon at all, you will know that he is very stubborn and this has been a very hard thing to get him to eat. If it doesn't sound wonderful then he won't eat. If anyone knows of suggestions of high calorie, high fat foods I would love to receive them!

This past Monday and Tuesday have been a little bit better and he has a little more energy to play with the kids, go out a little, etc. He was able to do some Christmas shopping for the kids and kind of just have fun.

I don't want to get anyone's hopes up or anything but I just have to share this news because it has really given me hope for this treatment of IL-2. I don't want to jinx myself and think this is something great and then get bad news at the Pet scan at the end of December.....but while Jon was receiving treatment and the first 5 days out of the hospital, he had no pain in his pelvic bone and didn't have to take any pain meds which was a big thing for me because lately he has had to have pain meds non-stop to cope with the pain. So then not having to have any of them for a little while really gave me hope. Also, on Jon's left side of his back you can feel the cancerous lymph node and I swear it got a little smaller. I am really not sure if any of this is an indicator of the treatment working, but really I didn't think I would see any changes and seeing these small things has really made me have hope. :> I just hope there are no more disappointment at the Pet scans.
We are scheduled to go in this Sunday to stay at Huntsman to start the last part of the first scheduled IL-2 treatment. We will be up there for the whole week and they will try to do as many doses that his body will take.

On a side note: I talked to Jon's boss at work and we discussed a leave bank for Jon that all State employees can donate their sick leave time to. Jon will completely run out of all his annual and sick leave right before Christmas and he has to at least have 5 hours per week in order to keep his insurance. Which of course is vital to us right now! (The first 5 days at Huntsman for treatment cost $67,000 we just the bill that was sent to our insurance!) Also, Jon will be going on short term disability in January which is only 60% of his income, so if state employees will donate time to him then he can have more paid leave and more treatment, so will please everyone donate time if they have it."

That was the end of the email. Thanks to everyone who has been so helpful and caring to Jon and Tiffany and their family. And please know that your prayers, donations and anything else you can or have sent their way are very much appreciated! I am so glad that so many people are stepping up to help them, and I am so glad that they get to see how much they are loved! We love you Jon and Tiffany (and Max and Kena too of course :D )!