April 23

     April 23^rd, the day that changed my life.  Two years ago I sat in the recovery area of Community Medical Center rocking my 4 year old daughter as she struggled with the confusion of coming out of the sedation required for the MRI.  I rocked back and forth to comfort her, but also to comfort myself as I had just been told “there’s something in there”.  It was a Saturday morning so all the other beds were empty.  Our only company was the nurses and staff taking care of Annabelle and it seemed as though all of their eyes were fixed on us.  They were probably just as shocked as I was to find out there was a tumor in that little girls neck.  I managed to not cry a single tear the entire time we were in that recovery area.  It wasn’t until I was home and my girls were in bed for the night that I allowed myself to cry.  Two years later I can still remember the details as if it were yesterday.  I know the exact route we took as they wheeled Annabelle back up to the pediatric unit.  I remember the hospitalist, Dr Lowder, looking up from the computer as we went past and saying “I’ll be in to visit in just a minute”.  I remember him and our nurse standing across the room delivering the news, a diagnosis that they were not confident in but the only thing they could tell us.  That same nurse had went back up to our room and brought me down my breakfast tray so I could eat while Annabelle was in the MRI.  It was so kind of him, but I almost vomited the little bit I did eat.

     Sitting here typing this brings back all the emotions and feelings of that day.  I am so grateful to be where we are only 2 years later, but the memories make me nervous as we leave this weekend to head to SLC for scans.  I always think that I’m fine and not worried about the scans, but inside my body is taking the brunt of the stress.  I can keep my mind busy, or asleep, but my body goes crazy.  It just wants to sleep all day, well, even more than usual!  If I didn’t have anything to do this week I wouldn’t get out of bed, but thankfully I have things that force me to get up and going.  Hopefully this will be a quick trip and we’ll be back on Tuesday, but you just never know.  I know other moms that have thought the same thing and then one single scan or one lab draw flips their world upside down…again.  All I can do is pray that never happens to us, but ultimately I am not in charge.  I just hope that what my dad said is true.  A dear friend of our family walked into his hospital room soon after he was diagnosed and said “Let me guess, you made a deal with the Lord?  You said you’d take it for Annabelle if she would never have to do it again.”  Of course dad agreed that he had indeed pled with the Lord that if there was a way that was possible that he would do that.  I’m not sure if I believe you can bargain with the Lord like that or not, but I guess for my own comfort I’d like to think that I lost my dad to cancer so now I’m safe from Annabelle having to fight again.

      And now, since I realized I haven’t update the blog since Annabelle’s biopsy, I better fill some of you in on that.  Annabelle ended up having the lump removed from her back and sent directly to PCMC for testing.  They determined that the mysterious lump was a tumor called a pilomatricoma.  You can Google it if you’d like more info, that’s what the Dr told me to do.  Seriously, I’m not joking, she really did tell me that!  Anyway, it’s not related to Ewing’s at all but it is a separate gene mutation that happens within the tissue of the tumor.  Our oncologists are talking with their genetics colleagues to determine if we should have any additional testing done when we are down next week.  Most often people have a single pilomatricoma and that’s it.  Annabelle obviously has multiple ones and that can be associated with a few different syndromes that carry additional concerns so that’s what we’re looking into right now.  The best outcome would be that Annabelle tests negative for the other syndromes and happens to be the odd one of few that gets multiple pilomatricomas for some unknown reason.  So actually getting no explanation would be the best answer.  Weird.

     We thank all of you for your continued support and prayers on Annabelle’s behalf and hope you’ll remember her as she goes in for scans on Monday.