Our Amazing Carter--The Big "C" Scare

We are officially up to date!!  I'm going to include some fun stuff in this post, too, so it's not completely somber.  But I know a lot of you don't know what's been going on and/or want more details, so I'll talk about what has been the hardest month for our family.

A few weeks ago we found a lump on Carter's bum.  We thought it might have been from that antibiotic shot he got in July so we waited a bit to see what happened.  After a week it still hadn't gone down, so we brought him in to see the pediatrician.  He felt the lump and said it was about the size of a marble, then said it was most likely nothing to worry about.  He doubted it was from the shot since that was so long ago and said that if it had caused a hematoma it wouldn't have been that big.  He also said that cancer in a 3-year-old, much less a muscle cancer (which is the only kind it could be since it's in his butt) is extremely unlikely.  Then I told him about our family history.

Tyler's family has been stricken with a genetic disorder called Li Fraumeni Syndrome (LFS).  Basically Li Fraumeni is a mutation on the TP53 gene.  That gene is a tumor suppresant gene, so a mutation on that gene makes it so your body will create tumors.  Therefore, LFS is not just a pre-disposition to cancer but more like a question of IF, WHEN, WHERE, and HOW MANY types of cancer you will get.  It is also particularly nasty in that it spreads very easily and also spreads when exposed to radiation treatments, limiting treatment options.  Tyler's mom suffered with several types of cancer throughout her life and tested positive for Li Fraumeni.  She ended up passing away from cancer at the age of 39, though to be truthful she defied the odds in many ways.  The doctors initially told her she'd never live past the age of 15, then never have children.  She did both and lived to see her kids grow up.  She was an amazing woman and I wish every day that I could've known her.

Other than Tyler's mom, we know that Tyler's grandfather has Li Fraumeni as well, as did his grandfather's mother, aunt, and sister.  We also know that Tyler's uncle and cousin have it.  Basically, Tyler has a 50% chance of having Li Fraumeni since his mom had it.  If he has it, our kids have a 50% chance of having it too.  If he doesn't have it, there's no way our kids can have it.

When I told Carter's pediatrician about this, he had no idea what Li Fraumeni was.  It's really rare and he's not the 1st doctor I've had to explain it to.  Looking it up, he got particularly concerned: the first prevalence of cancer typically comes during childhood (50% of people with LFS get it before they turn 30) and muscle cancers are quite common with LFS.  Therefore, Carter's little not-to-be-worried-about-lump became a big deal.  He ordered for us to get an ultrasound so we can hopefully find out a little more about this lump.  Ideally we would've done an MRI but the ultrasound is less invasive since a 3-year-old would have to be sedated for an MRI.  We had the ultrasound on Wednesday (I used my pushy mom-ness to get it done immediately) and are awaiting the results.

Carter likes to take off and put his pajamas back on when he sleeps...somehow he ended up like this in the morning!

In the mean time, I looked up some genetic testing places and found UCSF's Cancer Risk Center.  I called them up on Wednesday after the ultrasound and talked with them on the phone for about an hour, securing an appointment for the next day (again, they were booked through October but too bad they were talking to me on the phone).  We went and talked to the genetic counselor on Thursday who took down our family history (thanks to Grandma Andrus for helping me with all that!) and told us how "excellent" Li Fraumeni is.  Then we got Tyler's blood drawn as well as the boys'.  I was able to find where Tyler's mom got hers tested and obtained some medical record releases so they should be able to get the testing done quicker since they can compare it to Tyler's mom's.  They sent in Tyler's then they will send in Carter and Landon's if Tyler's is positive.  We won't find out about that for a month.

In the mean time, we've been trying to keep our minds off of things as much as possible.  On Saturday we went swimming at the local gym with a guest pass and it was a lot of fun!  The boys are getting so good in the water.  Landon loved going down the frog slide and Carter is getting used to floating around with his floatie.  It was so much fun!

 
Tyler's brother Brad also came into town for a few days and was able to both help give Carter a blessing and help out with Landon while I was in with Carter getting the ultrasound done.  I had my first appointment with my new cardiologist, so he and Tyler took the boys to the aquarium, too, and then we went to play at Golden Gate Park.  We also went to the Jelly Belly Factory!  It was a lot of fun and helped keep our minds off of things.

Some people have asked me how much Carter understands about what is going on.  I'd say, he knows there is a concern with the owwie on his bum.  At church the other day, Carter had been naughty and I was out in the hall with him.  Another little girl was brought out by her mom screaming and crying.  Carter said, "She has an owwie on her bum.  She needs go to doctor."  He did really great during the ultrasound.  He seemed nervous and unsure but laid still and held onto my arm the whole time.  He and Landon also did GREAT when they had their blood taken!  I was preparing myself for a cry fest but neither of them cried at all!!  They just held still and got it done.  They're champs.

How are we doing?  Oh, that.  We are taking things one day at a time.  I can't really talk for Tyler but he seems concerned but positive.  I've been doing well depending on the day.  It's easy when I have things to get my mind off it but for those few days in a row where we were either going to doctors or talking about things on the phone all day it was pretty rough.  We've got a really great support system, though, and it's great to hear people's encouragement, like my brother Jared who says they have a really good feeling that everything will turn out good.

I also feel incredibly confident that I can be the best advocate for my family.  Growing up with my heart condition and all my health issues, I'm comfortable in medical settings.  I know the kinds of questions to ask and I know how to push through the red tape a little bit.  I'm persistent and am not intimidated by white coats or medical jargon.  My brother Don made the comment to me that if his daughter were going through something like this, he'd fly me down to Brazil (where they live) to take care of that side of things.  I may not be good at a lot of things, but this is something I'm good at.  I told God a long time ago that I'd be able to better deal with a child with medical issues than one with mental issues.  I'm not sure if I regret that decision now, but at least I feel capable.

I've also learned a lot going through these last few weeks.  First, I feel like it's making a positive impact on those around us.  We feel the power of friends' prayers and thoughts.  My brother Jared told me the other day that his son Cohen, who is 4, prayed for his cousin Carter.  His parents hadn't even told him what was going on (he'd probably overheard) and hadn't prompted him to do so, but he prayed for his little cousin all the way across the country.  We feel a lot of love and are so grateful for our support system.  Mostly, though, I've come to appreciate my family a lot more.  I feel like I'm becoming a more patient mom and am learning to appreciate all the little things.  The other day Carter asked me to read him a book.  I was busy doing something else and asked him to wait a minute.  When I was done, he was no longer interested in the book.  It was an opportunity I'd missed to spend with my son.  I'm determined to miss less of those moments and to make every happy memory we can.

Sorry for the long post, but we really want to keep everyone updated and I think this is the best venue for that.  Hopefully we will hear from the doctor today about Carter's ultrasound and will let you know ASAP.  Thank you for your continued prayers and thoughts.  Hopefully in a month we can look back on this as a scary experience that ended up being nothing and can continue on with our lives with a renewed appreciation for each other.