First some back story - Last year Jacob's doctors informed us that they had exhausted all non-surgical means of dealing with his desmoid tumors - none of the chemotherapy options had worked and he couldn't have more radiation in that area of his body. This was bad news, since the tumor in his neck/back of his head has now started to come back, enough to already cause a lot of pain. He had a doctor appointment last month where they told us that the tumor wasn't pushing up against anything vital, so he was just going to have to visit pain management and learn to deal with being in pain. Needless to say, that was a very disheartening doctor visit.
Well, last week we visited his oncologist for a regular checkup. She told us that she'd found a study that was done in Japan that had 7 participants with the exact same combination of desmoid tumors and the rare gene mutation that Jacob has. The study had been to administer a new chemotherapy regimen - 3 out of the 7 had their tumor disappear and stay gone even 5 years later. The other 4 had the tumor shrink. It is very rare that there is study where all of the participants have a positive result, even with such a small number of participants. So, we are trying it out and hopeful that this will finally help.
Jacob had his first treatment yesterday. He will have 3 more days of back to back chemo treatments, then three weeks off, and then repeat that for 5 months.
This is a pretty aggressive treatment, so we expect the side-effects to be a bit more dramatic than his previous bouts of chemotherapy. He tried to go to school today, but he just wasn't feeling up to it. He was just too tired. There is a good chance that he will lose his hair and be sick with this chemo, but if it works, it will be all worth it!
Once again, if you can add us to your prayers, we would appreciate it.
6 comments :
We always put Jacob's and Scott and Gwen's names, too in the temple each month. We will pray that this new therapy will work and that Jacob can withstand the side effects. We love you all!
Thank you for the update. We love you all so much and think about you (and pray for you) all the time. Jacob is such a trooper, and so are his parents!
How wonderful there is some hope that something can be accomplished. We pray the treatment goes well.
We will also keep you guys in our prayers. Stay strong Jacob, we are so proud of you for being so brave through all this adversity! We sure love you guys!
Love you guys and we too continually keep you in our prayers. Thanks for posting this update.
Thanks for the update. We think about you guys often and you're always in our prayers. How was the first go around, Jacob? I'm sure that's a loaded question, but I'm sure you're being your normal positive self.
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