Blindside

Sure enough...Eli was down for the count again after waking up from his afternoon nap.  103.2.  One of the highest in awhile.  But the only remainder of his long list of gross kids viruses that we originally thought was the reason for the fevers were a few faint red marks on his leg.  He was fevering but didn't have a virus...and his stomach....

"...oh...shit...."
and,
"what are the results of the xray?!" 

those were the only two thoughts we had in our head.  The clock ticked on and then the doctors office closed and then the hospital and then it was night and no one else had called.

But also like usual...a few hours after Eli had a good dose of Ibuprofen the fever was down a little and he was cruising around the house like no ones business. He recently learned how to crawl onto one of the chairs by the window and look out.  That, and sitting under the dining room table...*cough...i mean awesome fort are two of his favorite things to do.  And he was  crawling back and forth from both laughing and playing. We didn't know what to think.

"Maybe he's fine?" "Maybe this is just left over from last week?" "Maybe I picked up something in Kansas or on the plane and he got it?" "Maybe he caught a cold from someone on the bus." "Maybe his teachers at Creative Minds read the thermometer wrong.  Maybe he's not sick." (followed by 5 temperature readings taken...i tried to reason averaging what i was getting to bring it down but we were still at 101)

No one called. We started to think, "Well...it must be nothing because if it was something they wouldn't have let the results sit at the hospital.  They knew it was an emergency x-ray. It must just be nothing."  Eli seemed ok.  Not great, but not horrible.  Certainly nothing we hadn't dealt with before. He went to bed and Rob and I planned to honor by our daycare's 24 hour fever rule and have Eli stay home the next day.

April 4th, 2012

6:45AM - Eli wakes up.  Both Rob and I didn't sleep great...that nagging feeling in my stomach had not gone away.  It was my turn to stay home with him so Rob left for work.  I had just discovered Yo, Gabba Gabba. One of the only small kids shows I don't want to shoot the tv (or myself) watching.  And I'll be honest.  I'm not a morning person. I like to take the first 3 hours of my day slowly. And I'm no ones hero, especially on sick days. I'll never pretend I don't use the tv to distract my kid so i can drink coffee and go through my daily apps on my Iphone.  And that's what was happening. Both Eli and I were kicking it with DJ Lance about 15 minutes into the program when the phone rang. 

"SELLWOOD MEDICAL PRACTICE" my phone identified.     ...my stomach turned

"Hello?"
"Hi, is this Meg? This is Andrea, from Dr. Pritchards office."

"Yes.......Hi..."  I was expecting the phone call but realized it wasn't even 8 AM.  They were calling me before the clinic even opened for the day.

"We are so sorry you were not called yesterday.  The hospital didn't send the results until this morning." She paused. 
"Meg,  I'm so sorry but the x-ray confirmed there is a large mass coming from Ei's right side. Or it could be that his liver is swollen.  Either way,  he will need to go to OHSU Doernbecher's immediately.  Can a 9 AM ultrasound work?"

bzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

my brain fogged over.

"um...ya. well...my husband has the car. um...he just went to work.  I'll call him? I guess...ya.."

She became very sweet and calm like all good nurses do.

"Yes.  Call him.  I can get you in for 10:30 AM appointment if that's easier.  Don't worry.  We'll figure out what the heck is going on."

I hung up and stared at Eli.  He smiled and handed me his toy car, "Ma-ma aaahgaaA!"  I pulled up his shirt and laid him down.  At that moment it was clear to me that there was a mass on his right side.  That ever so slight bulge that no one noticed three days ago now seemed obvious. A wave of panic swept over me and i started to cry. I dialed Rob's number.   He answered and I blurted out, "Come home immediately.  They found something in Eli.  We have to go to OHSU immediately...."

and I don't remember his reply or the next 30 minutes while i waited for him to get home.  I've actually never had that happen to me...I mean..I've been devastated before but this was much, much more intense.   Complete sorrow in one fell swoop.  He's my baby.  My only baby.  He's just a year old.

I think I called my mother.  I don't remember much until we were close to Doernbecher.  OHSU (Oregon Health & Science University) is a huge hospital.  It sits way up on the Southwestern side of the downtown Portland hills.  Eli was born here..well in a building up here... last March and both of us knew how to get up on the hill quickly.  But we'd never been to Doernbecher....the children's hospital.  Ugh. 

Doernbecher Children's Hospital

On the 7th floor we waited in a lovely, sun filled waiting area that was adorned with awesome kids toys and colorful murals.  Rob and I looked at each other and said, "He's going to be ok."   Neither of us were crying and our sense of hope with urgency returned.  We had pulled our shit together is the technical term. We were called into the room and Eli was lubed up.  I found it so ironic (if that is the right word) that he was having an ultrasound on his tummy and just 54 weeks ago I was looking at him in my belly with the same machine.   I couldn't read the young woman who was preforming the checks.  I have thought this before...they must teach that...complete stone face if you want to do that for a living.  I remember during one of our ultrasounds when i was pregnant and at the very end she said, "so..do you guys want to know if it's a boy or girl?"  and i couldn't believe that we had been looking at the same thing and she hadn't given it away.  I could never do that job.  I have a horrible poker face.

"I'm done now.  I'll go give these to the head Radiologist and she'll come talk with you. It will be a little bit."

Eli having an ultrasound

Those moments were the worst.  The absolute apex of not knowing what was going on.

She came in and cut right to the chase looking directly at me.  "Hello.  I'm Kathrine Hopkins.  I'm the Director of Pediatric Radiology here at OHSU.  I'm sorry to tell you this but we are confirming a mass.  A large one.  It's likely coming from the right kidney although without further imaging i can not be 100% certain.  At this moment though, and with the 20 years of experience I have, with what I'm seeing with Eli's ultrasound I'm going to bet it's a Wilms Tumor."

BZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZzzzzzzzzzzz

The sound of Rob beginning to cry pushes me further into a fog.

"um.....ok? what does that mean...i mean...a tumor?  how do we...um...what do we ...um...do?" I managed to stumble something of that nature to her.

She immediately replied, "We are going to have to do more imaging to confirm. Today.  It it's a Wilms we will need to see what stage it's in but it always requires a surgery to remove the tumor and a scheduled treatment of chemo."

My heart shattered.  " 'What stage it's in...chemo'...so cancer?"

"If it's a Wilms then yes.  They are always malignant.  But we won't know until we can get a cat-scan. I do have good news. I don't see anything at this point in his other kidney.  I know that may not seem like much right now but trust me.  That's very good.  You may have caught this early enough."

I began to cry.

She told us that Eli would need to be admitted but it would likely be a few hours to get a bed ready.  We were left to gather our things and somehow ourselves.  We stayed there for awhile.  In the darkness of the ultrasound room and cried.  Eli was confused.  He tried to pat us and smiled.  He's such a good boy.

 We were blindsided

Sickie

So by the end of the week Eli was a complete mess.  And for lack of a better term...it was gross.  The rash started to weep and rise...almost like he had been burned.  The Impetigo was in his nose too and his face was a crusty mess.  We went back to see  Dr. Pritchard a second time on Thursday and focused on the rash on his leg, the growing ear infection and....poor guy...his four molars that were pushing through in the back of him mouth.  Neither the nurses, the doctor or Rob or I thought anything about his belly.  It was all about being grossed out by the "Herpangia" blisters (another term you best just chuckle at and not google) in his throat.  He was upgraded from a cream to an oral antibiotic and we were sent home.  They had us on the schedule for the following Tuesday to return...but only because it was his 12 month check-up that I had to reschedule from weeks before.  They told us that if he was feeling better we could cancel the appointment as he wouldn't be able to get his immunizations because of the antibiotic. 

By the weekend Eli was feeling better. A LOT better. So much so we kept the already rescheduled 3 time appointment for him to get his first haircut. 

April 1st - Eli's first haircut

The rash had faded and the ear infection had gone away.   But he kept getting fevers at night.  They weren't as high as they had been in the weeks previous but we had been giving him the Ibuprofen/Tylenol cocktail so i thought they could be masked.  Although I should have been relieved my gut was telling me something was wrong.  Something causing all these things...something more serious. Fevers stress me out....all i understand about them is that they are the bodies way of fighting something...and they weren't going away.  I noticed his belly again...and sometime that weekend i noticed that it had started to bulge on the right side.....just slightly...almost too faint to tell.  "it's just gas." i kept telling myself but knew better.  I had Rob look at it...and we both noticed that his belly button had started to push out like it was an "outie".  He doesn't have an "outie".  We decided we would take him back in on Tuesday and talk to Dr. Pritchard about his tummy.  Little did we know that by making that decision we may have saved his life.  Moms and dads out there.  If there is that little nagging feeling in your gut telling you something isn't right with your child...there is something wrong.  Don't ignore it.

But by Sunday he was playing and acting like normal and we decided he was well enough for daycare Monday. That was the normal routine after all.

April 2nd.  Ku vs Kentucky.  That's all we were thinking about Monday at work.  Eli had a great day at daycare.  His daily report made no note of anything unusual.  Rob picked him up and we all met up at home to watch the game.  Although Kansas lost the game we were very appreciative of the effort and were relieved that Eli had seemed to break from his fevers.  It had been two straight nights without them. We all went to bed happy. 

April 3rd.  Eli's appointment was at 10 AM so we took Rob to work (we share a car) and then made our way to the doctors office.  He was weighed, his height measured and his head circumference.  All near the 80% mark. Big boy.  Dr. Pritchard was relieved that his rash was under control and that his ear infection was gone.  She confirmed he couldn't have his shots because of the 10 day course of antibiotics and she was about to let us go when she asked me (almost like she could sense it on my face) if there was anything else i was concerned about.  I turned to Eli who was happily ripping apart the paper they lay across doctors exam tables in his diaper and said,
"well...yes...his stomach...something isn't right.  Does it look odd to you?" 
She laid him down and started to feel around his belly and i saw something in her face change.  She looked at me and said,
"Do you have to go back to work now?"
.......my gut started to feel gross again....
"Well...not if you are going to tell me I need to do something else."  I replied.
 "Ya...i think we better get an x-ray on him.  It might be gas...but you are right..it's quite distended.  I can call Providence Medical because it's closer and get you in right away. I bet they can have results back to me by this afternoon."

I was quiet.  .  .

     The odd silence was broken by her assuring me that the x-ray would make me feel better.  I know she was just trying to stop me from worrying but i already knew something was wrong.   We gathered our stuff and headed to Providence.  It's a small hospital closer to our house...not the hospital Eli was born in which is downtown and much harder to get emergency requests into.  I called Rob.  He was worried too but we were glad we were getting it looked at...and a few hours isn't too long to wait.

Eli rocked the x-ray.  Didn't move once.  He was totally obsessed with the machine and the light that fell onto his belly.   They had me wait to dress him until the image had come through and it was clear.  If they had seem something at that moment they kept it under wraps.  I asked if they would get the results back to my doctor today.  The technician told me it should be no problem.  We gathered our stuff and left.  In the car I sat there for a moment.  Should i go into work?  Should he go to daycare?  I looked back at him and he was cooing and laughing and seemed fine so i decided that I had missed too much work with him being sick that I really needed to go in for the rest of the afternoon.  I was behind on deadlines.  And it would make the few hours we had to wait go faster.  I dropped him off at daycare and headed to work. 

The next call we got was not from the doctors office telling me that his x-ray was just gas. 

The next call i got was at 3:30 and it was from Creative Minds, "Meg........it's Stephanie, Eli's got a fever again...it's 103!"

Something was very wrong.

Red flags aren't always red

Eli kept getting sick.

At first it seemed to just be the price you pay to be a full time daycare kid....with the monthly cold and the persistent runny nose.  But then he started catchings e.v.e.r.y.t.h.i.n.g.  Pink Eye, ear infections, then hand, foot & mouth, Impetigo, then hand, foot and mouth again. All within a two month stretch.  (if you don't know what all of these nasty little things are I'd suggest NOT googling them and looking at the images as I did) He always has eaten well and had lots of energy so it was odd that his immune system seemed weak.

It was the middle of March. Eli had just had his first birthday party. KU was delivering to us a super fun March Madness.  Then, sadly, Rob's grandfather, Bob Shoffner, passed away on Friday, March 16th. Rob went to Kansas for the funeral for a week and Eli and I were home. We were following the regular schedule as much as a parent can who is flying solo.  I remember during that week noticing that Eli's tummy was a little fuller than usual.  Nothing disturbing...i actually kissed it and commented to him a cute, big, baby belly he has.  One year olds are known for a round belly and I'd always thought they were cute.  He was in great spirits and played, ate, slept like normal the entire time Rob was gone. I was relieved by that as the last time Rob was away he had gotten pretty sick and balancing a sick baby, work  and sleep on my own was challenging.

Rob flew home Sunday, March 25th.   Both Eli and I were so happy to see him and we enjoyed a family evening together. The next morning I went to work on my own on the bus. Mondays I have an early meeting and Rob takes Eli to daycare by himself. I had barely gotten out of my meeting until i saw his daycare number come up on my work phone...it always meant the same thing..."Hi Meg, It's Stephanie.  Eli has a fever again.  It's over 102 degrees."  I sighed and told her one of us would be there asap to pick him up.  He appeared just sad from a fever...but no rash, no nothing.

We went home and cuddled with Mario kitty, gave him some Ibuprofen and planned to stay home with him the next day to honor the 24 hour fever policy at his daycare.  That afternoon we got an email from Stephanie confirming there had been both Impetigo and Hand, foot & Mouth. 

The next morning was a beautiful day...the sun was out! (an unusual thing in March in Portland)  As I was standing in the window with Eli looking at the flowers that were budding I noticed he had a rash.  Rob and i were bummed because we thought the fever would not lead to anything else...so we called the doctor.  He was seen the next day and had both Impetigo and H, F, & M.  And then it spread....like crazy.   



Taken on March 26th - looking at it now you can see how large his belly is. But no rash.



Taken March 27th - and trust me...it got MUCH worse.

To blog or not to blog

I struggled with whether or not to start up a blog about Eli's battle with cancer. This blog site was to be kept for our most favorite trips and nothing more. But it's become clear that this is one adventure we never thought we'd take. 

Much to the surprise of maybe my mother and to my high school and college friends, I'm very private these days. I don't like to share drama with the masses.   I like easy, lazy, fun things.  (think David Cross stand-up or iPhone apps that turn your picture into a unicorn) Not serious, stuffy, sad things.  I don't like people looking at me...and large crowds make me very uncomfortable.  I also have learned not to dwell in sorrow when sad things happen...as it's crippling and a total waste of energy. And shitty things happen to EVERYONE. Over and over. It's life.  I fully believe that everyone has control over only their reaction to life...and that that reaction can be a great barometer to how mentally healthy you are.  Stay calm and carry on.  I was born in England after all.

But of course we live in this totally cyber world.  Although often surface information, it is really mind blowing that i am still "friends" with 1/2 of my 5th grade class on facebook.  HALF.  I'm 36 years old.  That is crazy.  My mother went to her 50th class reunion and hadn't seen some of those people for 50 years.  I am now able to "see" people who live all over the world....send them a note...anytime i feel the urge.  I get to see their lives...their day to day activities, their kids, their spouses.  It's something that takes some getting used to (I'm still not switching to timeline on facebook...hurts my eyes and annoys me)...but in lots of ways I really like that connection, from facebook, private blogs, email, etc...as surface as it may be in some ways. 

The love Rob and I received in the last month was expected from our family and close friends and we were so thankful for it.  They are our foundation.  But the love that poured from facebook, email, texts, phone calls, etc, etc, etc from people we hadn't seen in YEARS was astonishing.   It made us emotional to know that these people actually still thought of our little family and wanted to know more...and even more humbling...wanted to help. People who have never met Eli.  It wasn't expected and it was wonderful.  And at the same time i began to get overwhelmed.  This incredibly large circle of love wanted to keep knowing updates on Eli...and at the beginning I wasn't able to breathe...let alone talk about it over and over.  So, at the suggestion of my mother, I began to write some things down.  I didn't get much written in the hospital...as those were dark days...so I may have lost some of that forever...but i tried to remember as much as i could and back fill.  The rest is a blog for the rest of this journey.  To let those that love us know we are OK...or not...but just to know.  That's what this cyber space world we live in is supposed to be about, right?  communication on steroids.

I guess there is one other reason that we thought to publish this out to the series of tubes. Life is about perspective, and this has certainly fine tuned that perspective for our family.  We'll lose it again..as we all do because we are human...but maybe by writing this "adventure" down we can have reference to remind us how lucky we are.  And how life is only about health and love....oh ok...music too.  Everything else is just filler. 

And maybe someday Eli will look at this picture and read this story and be filled with happiness to know how many people love him.