Original first post on CaringBridge

I'm copying over the post I had originally placed elsewhere here:

February 16, 2013:
The past week has been one of the craziest, stressful, and emotional weeks of my life. So, I'll back up and catch y'all up with a little background and the events of the past week.

Alex was diagnosed with aniridia at 2 months of age. Aniridia is a lack of iris (the colored part of your eye). None of us caught it at birth because he has a rim of iris present and it looked like he just had really dilated pupils-no biggie, his dad has pretty big pupils naturally. The pediatrician was concerned, and I figured it couldn't hurt to see an ophthalmologist, so an appointment was made. A few days later I noticed Alex's eyes were starting to jump side to side in a pattern that we medical folks call nystagmus-now that freaked me out! So we walk in to the eye doc, she takes one look at Alex and says, "he has aniridia" and explained that sometimes this comes with a genetic condition that can cause other issues. Dilated his eyes and put me back into the waiting room (thank God she is no longer at the eye center). That prompted us to have the genetic testing done on Alex, which confirmed he has WAGR/11 p Deletion Syndrome.

W in WAGR stands for Wilm's-there's approximately a 50/50 risk of these kiddos developing this kidney cancer, The A is for aniridia, G is for genitourinary issues (Alex had an undescended testicle) and R stands for retardation-developmental delays. If you want more info, check out wagr.org.

So, that 50/50 risk of Wilm's tumor earned us ultrasounds every 3 months. Just so happens I had my younger sister J with me last Friday for Alex's ultrasound. Amazing what you can get a "new" nurse to go see for fun. ;) Anyway, we both noticed the tech taking lots of pics and she went to make sure she had everything that the doctor needed and we knew something was up. We were then sent to the genetics clinic where they told us that they'd found a mass on Alex's kidney and that he would be scheduled for a follow up CT the next week.

The CT was on Monday. It took FIVE sticks to get an IV in lil man. Kid just has really bad valves in his veins. The nurses would get into the vein and hit the valve and no matter which nursey trick they used, it just didn't work. So after #3, I told them I wanted the ultrasound brought down and it took twice more. Let's just say that mommy now remembers that lil man's good vein is found just under his left AC using ultrasound. So they finally got the CT done and it confirmed that Alex had a tumor on each kidney. And let's just say that I like the radiologist much more than I like the geneticist who lectured me on kids chemotherapy (I had given a couple of names to her on Friday to pass along to the team since WAGR kids react a little differently to some things). We were told that oncology would be in contact with us.

We met with oncology Tuesday morning. Alex's oncologist (Dr. Meyer) started off asking if we had any questions/concerns before he started his spiel. I mentioned that I would like for him to consult with Dr. Dome as a trusted friend and colleague (and fellow Gorilla mom) had recommended that he be consulted. The consult was recommenced, mainly for two reasons:1-WAGR syndrome is extremely rare (we know of fewer than 500 cases worldwide and 500 is generous) and 2-the aforementioned we know these kiddos react more sensitively to some things. What I loved is that Dr. Meyer looked at me, grinned, and informed me that he'd already emailed Dr Dome the night before AND he'd emailed another oncologist at Texas Children's who'd treated 3 or 4 kiddos with WAGR and Wilm's. Whew. No resistance there. Thank GOD! 

So Dr. Meyer laid out the plan. Alex will have six weeks of chemotherapy with three drugs on weeks 1 and 4 and one drug the other 4 weeks. Then they'll rescan and decide on surgery or more chemo at that point. Alex is schedule for a port placement next Tuesday (for which I am incredibly grateful-limits the IV sticks), will have a baseline echocardiogram done on Thursday (one of the meds can cause long term heart issues but isn't expected to be an issue at these doses), and the plan is to start chemo on Friday. And somewhere in there we're supposed to squeeze in an MRI so they can track progress with MRIs instead of CTs to drop his radiation exposure. The "good" news is that Wilm's is highly responsive to therapy and has an incredible 5 year survival rate (which is pretty much what they consider to be the "cure" rate).

Now that we've covered all the gory medical stuff, I'm gonna get a little mushy. The three of us are incredibly blessed with wonderful friends and family. I confess, I alerted my mommy friends first. We've been through months of pregnancy, newborn sleeplessness and colic, all those fun baby firsts, toddler tantrums and all that fun stuff for the past 3 years (starting this month actually). There's not a whole lot we don't share. Then came those incredibly hard calls to the family. And once I told Grandma in person, I posted on Facebook what was going on. The outpouring of love and support has been absolutely amazing. Thank you all.

I plan on posting again Tuesday after the port surgery. And Robert may pop in from time to time to write a little. But those of you who know him well know that he's a man of few words. ;)

Ya know, I have one more incredible group that I need to mention here-our WAGR family. You have all already been an incredible source of strength for us. I'm sad we won't see you all in Minneapolis!