Friday, February 19, 2010

Finally time for an update!!

Sorry it has been so many weeks since my last post. We have been so busy with seeing so many different specialist's at Huntsman and with life in general that no time has been made for the blog.

We finally have been able to start the treatment at Huntsman. If you know us personally then you know that we have been having a lot of trouble with our insurance company approving treatments or even some prescriptions and chemo drugs. It has set treatment back and really wasted precious time that we don't have. Right now though luckily they have approved the next treatment thanks to our Oncologist talking on the phone for many hours and writing letters to the top people at the company.

We talked with a couple of Neuro-surgeons and the best option for Jon's small brain tumor was to do a newer procedure called Stero-tactic radiation surgery. It was a one time treatment that was as strong as three combined radiation rays. They said it had a very good chance of working with Jon because the tumor was about the size of a pea. They do not guarantee that additional tumors won't show up, but they said we can always do this again to another area if they do show up in the future. Hopefully we don't have to worry about that right now:> We start the chemotherapy tomorrow and will keep taking it for 5 days and then have two weeks off and then back on for 5 days. At the end of that time we will do all the mapping and scans again and hopefully the cancer will be stable at that time. We will keep going with this same treatment if it shows that it is working and until we can get onto a B raff clinical trial which is our best option.
The word around the Melanoma clinic is that Huntsman is finally getting this B-raff clinical trial and it should be available starting in about 2 1/2 months and that would be just in time for us, if we play our cards right. Right now with everything going on it seems too good to be true, but it would be just perfect. I talked with our doctor's nurse today about the B-raff treatment and she told me that they have another male patient that is about 6 years older then Jon and who was in as much pain as Jon and that after starting the B-raff clinical trial for 6 days he had no more pain because the cancer tumors were shrinking so rapidly. Wouldn't that be like a complete miracle if that happened to us. I would be without words.

So right now we just keep praying and keep hoping for a miracle to take place. We know it would be possible if Heavenly Father intended it and we sure hope He does. We are trying to hang tight and be patient for this treatment to start working. The doctor said to try and not measure any of Jon's tumors until 4 weeks have gone by, but its hard not to touch them and assess them always. We have been praying for understanding of this trial that has come upon our family and for time together. Please remember us and keep us in your prayers. We have such a long road ahead that it is hard to see the light at the end of the tunnel. It seems like it is a long way off for us. Take care and may we all have the Spirit to be with us.

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