Wednesday, January 20, 2010

Update After Surgery

Hi everyone. I just wanted to post that everything went very well with Jon's surgery on Tuesday morning and today his pain is very well controlled. The surgery was alot more complicated then the Drs. had originally thought. The cancer on Jon's shoulder that was removered for the TIL harvest was actually under a major muscle and in between another, so in order for the Drs. to get to the tumor they had to resection and take a large amount of two muscle groups on his shoulder out. Because of this complication they wanted Jon to stay a few more nights in the hospital to get the pain and everything else under control before getting on the airplane to go home. If everything is on schedule we should be able to go home on Friday night which we are very much hoping because this has been alot longer then we had hoped and we are both so home sick for our kids. Thank you everyone for your support you have shown to us. We are so happy and lucky to have such a strong support system that has backed us up every step of the way. We appreciate everyone remembering us in their prayers.
I just found out a couple nights ago that My sister's father-in-law Ken Marshall passed away after his long battle with his cancer. Jon and I are so sad for his family. I know it was expected and Ken was ready to return to his heavenly father, but at the same time it's hard for us here on earth who will greatly miss him. My prayers are with you Maxine. Ken was a wonderful person who was always kind and very friendly to Jon and I. He will be missed.
Take care and may everyone have the spirit to be with them.

Saturday, January 16, 2010


Hi everyone we are still in Maryland and will be until Wednesday night of next week. Everything has been going very well. I know that some people know what is going on and what happened at the hospital and some don't so, I will just quickly fill everyone in.
We saw the Doctors and Nurses at NIH on Thursday and nothing could have gone better. They approved Jon on Friday for the Tumor Infiltrating Lymphocytes (TIL) harvesting and treatment and he became their patient :>
We are so happy and feel so so blessed. So many people in our same situation were turned down, so its kind of a happy sad thing. We are happy it was us, but sad that everyone can't get this new treatment. They are starting quickly on his cell harvesting and have scheduled for one of the cancer tumors on his shoulder to be removed on Tuesday morning. Sadly, he will have to be in the hospital starting Monday night and going through Wednesday. Both of us are not too happy about this, but what can you do. It's for safety issues and to make sure the cancer and pain are both controlled.

The Doctors have explained the TIL treatment to us as followed which is a little different then we were expecting but still okay because we are getting the treatment right?
The tumor and cells are harvested in a lab and clinically enhanced into TIL cells which takes anywhere between 4-6 weeks. After they are grown out into the millions they are then put back into Jon's body, but first they will be giving Jon inpatient chemotherapy drugs for one week solid to clear out his own immune system and pretty much completely put him at zero. After that one week in the hospital they will start infusing the TIL cells into his body followed then by some Interleukin II treatment. After another week of this treatment, he will then have to stay in the hospital an addition two weeks in order for the immune system to calm down a little and get some strength up and get over all the side effects.
The Doctors have said that this treatment is a one time deal and that its strong enough and made to be once in a life time and hopefully put you in full remission for a while. Because this is not FDA approved and still in phase 2 of the clinical trial process this treatment is not certain to work and the numbers are not clear enough if it is a long term survival treatment, but.. BIG BUT, this treatment has been out for a few years with testing and has shown to have great results with Melanoma cancer and so we are happy to receive it and hope for the best.

One thing we are very scared about is not receiving any treatment on the cancer for another month. We don't want the cancer getting out of controll and taking over Jon's body before this treatment is given, but the doctors have tried to reassure us that the TIL cell treatment will work and take care of everything and that it's not a big deal to wait the 4-6 weeks but I see Jon getting weaker and think we need something now. Unfortuately because of the clinical trials you cannot have any treatments for 6 weeks prior to this one. They call it a "Wash out period". So please keep praying for us to get this under control and strength to go on. We will be very happy to be coming home and be with our children again. Thanks for everyone's support and prayers.

Monday, January 4, 2010

Very excited to announce.....

I am very happy and pleased to announce that I talked with Dr. Grossman earlier this afternoon and found out that Jon's MRI scan of his brain came back completely normal and .... We got excepted at the National Institute of Health in Maryland. We have an appointment to start the TIL cell harvesting on January 14th.
We cannot begin to tell everyone how happy and blessed we feel right now. I have a strong testimony of prayers and fasting and I know that it really helped us with these results we got today. Thank you so much for everyone's prayers and all of the fasting that took place yesterday on our behalf. We made it happen.
Now all we have to do is find a flight, get a babysitter for the kids and dogs and puppies, find a hotel, Rent a car, ect... Well everything will just fall into place right? We have a week, so no stress. All I am thinking about is the great medical treatments that are offered there and what a blessing it is to be one of the few that gets to receive it. Thank you. Keep the prayers coming and until next time, everyone stay safe and may the spirit be with you.