Nora's Story

So Nora had a lump on her neck.  I noticed it on a Wednesday evening a little over three weeks ago.  It seemed quite large and I was surprised that I hadn't noticed it before.  I texted our doctor right away and he said it was probably just a swollen lymphnode (99% of the time that's what it is) and to just watch it for a few days and let him know if she got a fever or it got bigger.  Well, a few days later it was still kinda freaking me out so I took her in to get it looked at on that Saturday.  Two doctors looked at it and determined that it was probably a swollen lymphnode and gave her an antibiotic.  Said that if it went down then good, if not then probably ought to get an ultrasound.  By the following Thursday, the lump was still there and I took Reed in to get his ears checked (in the meantime, he got pink eye then a nasty cold and said his ear hurt).  I asked our regular doctor then about the lump and he suggested an ultrasound, he didn't feel like it was a lymphnode.  He said to get an ultrasound in the next week or so.  So I set up an appointment for the following Wednesday down at Primary Children's.  Here are pictures of the lump before we went in:

As the week wore on, I got more and more nervous about what the results of the ultrasound would be.  I shared my concern with friends and family and was assured that she would be prayed for. I didn't really know what to expect with the ultrasound, how long results would take to get, etc.  But there was this lingering fear that it could be something bad and we wondered how we would deal with it. 

Wednesday morning arrived and we headed down to Primary Children's.  We went right back to get the ultrasound.  The tech made a few measurements and such then called in the radiologist.  She looked and looked and then said that she did not know what it was and that she would have to think about it.  I asked a lot of questions and she basically told me that she didn't know what it was and that she would have to do some research.  I could see that there was a vein or something in it right away but other than that, I didn't know what I was looking at.  I left with more questions than I had arrived with!  The radiologist said that she would have a report and recommended course of action to our pediatrician by the end of the day.  We left and went down to a little cafe near the hospital for a snack before I headed to work.  While still at the cafe, my peds office called and recommended that I get an appointment for a biopsy the next day with a Ryan Arnold at Primary, that I should call right away to get the appointment.  Ok, well, talk about freaking me out even more!  So that's what I did, right away, got an appointment for 9am the next morning.  Meanwhile, my mom took the kids to the children's museum down in Salt Lake cause we were already there.  Here are a couple of pics from that:

I had no idea what to expect the next morning but starting thinking that I would need to get her off of food/formula hours before cause of course they would have to sedate her.  After some phone calls, I figured that I shouldn't feed her.  I could feed her up to midnight so at 11pm, I was feeding her and my regular ped called me.  He told me that he thought it was still a lypoma, just a fatty tumor thing.  So early the next morning we were off to Primary again with a pretty big lump in my throat and knot in my stomach.  This was not good. 

We checked in, they got her hooked up on IV's, took vitals then Dr. Arnold came in to talk with us about the procedure.  Seemed simple enough but still sad for a 7 month old baby.  He told us that he thought it was almost definitely either a "sick" lymphnode (infected, blocked, etc) or lymphoma, not a lypoma.  You read that right - cancer.  Ugh.  We didn't really know what to think of that, that was the first mention of cancer though it had been in our heads.  He was trying to be reassuring that it's a very curable cancer but scary nonetheless.  So we handed our baby over, watched her get drugged up, laughing at first then just faded away from us.  We walked out of the room as the nurses put their masks on and went to work.  I will NEVER forget that scene and how I felt.  We headed to the cafeteria for a cup of coffee and to wait.  They brought her into recovery about 45 minutes later.  Dr. Arnold said that it went well and that it would take up to a week to get results, the samples he got were really good.

I brought Nora home, she was groggy and sad but doing ok. She had a bandage on her neck and she was a bit grumpy.  I just loved on her the rest of the day.  The waiting game had started.  We left early the next morning for Moab and as we drove, Fogg and I discussed how we would help Nora beat what we were sure was cancer.  We would move to Boston where they have the best children's cancer hospital. We would give her every advantage to beat it.  No holds bar.  We got a call around 1.  It was Dr. Arnold.  He had great news - it wasn't lymphoma!  In fact, it was a totally benign, common condition called hemangioma.  She wouldn't even have to get it removed, it will go away on it's own by the time she is 10 years old.  What?!?  We were thrilled, though still a little reserved about it - that was a big change from what we were told it might be.  Dr. Arnold said that he would get complete results next week and call us then to confirm but he was pretty sure it was a simple thing.  In fact, he said that he had given a 40% chance of being lymphoma, 46% chance of the sick lymphnode and a 4% chance of being the hemangioma. 

A week later we got the call from Dr. Arnold that all was what they thought, confirmed, hemangioma.  Something called a GLUT -1 Hemangioma.  We did some research over the week and found out what a hemangioma is.  Basically a random clump of blood vessels that will go away as children get older.  50% gone by the time they are 5 and 90% of them are gone by the time they are 9.  It's almost like a birthmark.  Go ahead, google it for pictures, you've probably seen them before because they are typically on top of the skin, hers just happens to be under the skin. 80% are on the head and neck.  30% of kids are born with them, the other 70% will get them within the first few months of life (she was on the tail end of that showing up).  Here are some pictures of her lump after the biopsy, a pinhole and a bruise, poor girly.

Ok, so here I'm going to get a little spiritual on you but I have to share my thoughts about this.  First of all, Praise God!  There were hundreds (probably no exaggeration there) of people praying for our little Nora and our family.  Dr. Arnold said to me twice that he was surprised about what it turned out to be.  As far as hemangiomas go, hers is under the skin and in a discrete location where it is hard to see.  She will not be ridiculed in her formative years about this big red thing in the middle of her face.  She doesn't even have to get it removed!  God answered prayers.  He was there for us in every sense.  Fogg and I didn't have emotional breakdowns at any point during this process, we felt protected, our hearts and minds spared the endless pain of wondering what would happen.  He helped Nora recover quickly, with no infections.  He spared our family a week of waiting for results, we got them in about 28 hours.  We feel protected, loved, supported and gifted throughout this experience.  What are we to learn from this - I'm sure hundreds of lessons but a few we've already noticed: Trust.  Trust in God, trust in friends and support people.  We learned what it was like for God to sacrifice his Son, what a true gift that was to us.  We learned what kind of love Jesus has for us because it's more than the love we have for our own children (doesn't seem possible but it is!).  We learned that we have so many more friends than we thought we did, the body of Christ is big!  We hope that through our daughters trouble, others may see a true miracle through her and see how powerful God can be.  We have been strengthened and though it was so hard to watch our girl go through this experience, we feel gifted to the lessons we learned and continue to learn.

I recently finished a book about a mother that survived a plane crash but was severely burned.  She shares her passion for surviving (and thriving) for her kids.  I got to reflect on my experiences in the past month through that reading and feel a renewed sense of gratitude to my life.  My kids are healthy, I'm healthy, I have a wonderful and supportive husband, I have a great life.  Let's be appreciative to what we have, it's all we get.  As we learned this morning at church, let's get better, not bitter through storms in our life.  Amen to that!