Jacob Condition Overview

   Jacob has had bumps on his head since he was about 12 month old.  He had them removed when he was 5 and then again when he was 10.  In October of last year, a bump came back and it was growing fast.  By the time we got him to the doctor in January, it was hurting him really bad.  The doctor looked at the bump and scheduled him for an operation two days later.  The mass was about the size of a golf ball.  When the doctor was done with the operation, he came and told us that the growth wasn't growing into the bone, so he didn't think it was cancer, but it had eroded the bone a bit by pushing into it.  No wonder it had been hurting him.
   The results of the biopsy came back and said that the mass is what's called a desmoid tumor.  It is not cancerous, but they tend to come back and be really annoying.  We met with an oncologist and she said that these types of tumors are very rare, but they can be signs of another syndrome called Gardner's Syndrome.  She sent us to a geneticist to see if that was the case with Jacob.  (He also had extra teeth that was another sign.) The tests that were required usually cost thousands of dollars and our insurance normally wouldn't cover it.  Scott and I decided that it needed to be done no matter what and we would figure it out.  The geneticist was really great, though, and fought with our insurance and the whole thing was covered.  We are really blessed.
   Well, the tests came back and he had a mutation in the APC gene.  (I told him that if he was going to be a mutant, he might as well walk through walls or something cool like that :-)  This mutation means that he has familial andenomatous polyposis (FAP) or more commonly known as Gardner's Syndrome. The biggest problem with this syndrome is colon cancer.  In fact, the lifetime risk to develop colon cancer is 100% without intervention.  The interventions he will have will be a colonoscopy every year.  If the polyps become too bad, he will have to have a colectomy (the geneticist said that from the position of mutation on the gene there is a high chance that he will have a colectomy in his teen years.)  He met with a Gastric Intestinal doctor in July and his first colonoscopy will be on Wednesday, August 15th.  We will know more after that is done.
   Meanwhile, the oncologist also ordered MRIs every six months to check on the desmoid tumors to make sure they aren't coming back.  The MRI in July showed that the tumor is back.  Since surgery is just not keeping it gone, the oncologist wants him to have chemotherapy.  At this time she told us that there was a 50% chance of it getting rid of the desmoid.
   Scott and I went to the temple the Friday following that appointment.  I was very unsure of whether or not I wanted to expose my poor little boy to chemo or not.  There have been people in my ward and neighborhood that have had to have it recently and it made them so miserable.  I really didn't want him to have to do that, but I also knew that surgery just wasn't working.  He does really well with surgeries, but if it doesn't work, why keep doing it?  Also, 50% just didn't seem like very good odds for all the misery that I anticipated him having to go through.  It was just like tossing a coin.  At the temple, the tossing the coin image kept coming into my mind.  Then I imagined the Savior catching the coin mid-toss and making the coin land on the side it was supposed to land on.  50% chance seemed to be much better odds to me then.  My son in is the hands of the Lord and things will happen the way they are supposed to happen, but we have to actually toss the coin.
  This last Monday, we met with the oncologist again.  She changed to say that there is a 70% chance that the chemo will get rid of it (don't know why it changed.)  The dosage he will get will be very small so it shouldn't make him loose his hair or make him too nauseous.  The medicine can be in increments of 20 to 300 and he will have 30.  This really shouldn't make him miserable or affect his life too greatly.  He will have the therapy every week for six months and then every two weeks after that (not sure for how long.)  We are able to get his appointments in the afternoon so he shouldn't miss too much school.  I'm also arranging it so that he will not have PE.  They will put a port in his chest when he has the colonoscopy on Wednesday.  This will allow them to not have to put in an IV every week.  He will still be able to go swimming and everything just like normal.  He will start the chemo on the 22nd.  I hope it works a quickly as possible because the tumor is causing poor kid a lot of pain right now.
   When we found out about all this back in March, Scott gave Jacob a blessing.  I was hoping for a blessing saying, "You are healed!," but that was not the way things are meant to be. Instead he was blessed that he will still be able to have the normal things in life.  This condition will not prevent him from going on a mission or having a family.  He was also blessed that he will remain cheerful through his adversities.  (There is a 50% chance that he will pass this gene on to his kids.  Scott and I were both tested and do not have this mutation.  Jacob really is a mutant :-)
   Well, that pretty much brings things up to date.