Day 1

A Visit from Elliot

They call it Day 1 because it is the first day on the treatment protocol.  The first Vincristine, one of the chemotherapy drugs, was given through Austin's port.  His hemoglobin was low so he needed a blood transfusion.  It was amazing to see the difference in how Austin felt before and after the blood.  Before, he was pale, tired, grumpy, and didn't want to do anything.  After the blood he was sitting up and wanted a milkshake and had a big smile.  Oh how I love that smile!!!  It lights up the room and makes everyone happy.  I want to say right here, just to put it out in the universe, how grateful I am to the person that donated the blood that Austin received.  I know I won't ever meet them or know who they are, but I am grateful for that little sacrifice that made such a difference to my little boy.  As a thank you on my part, and as a small "pay it forward", I will be donating my own blood as soon as I can.  I encourage all of you that read this to also donate blood, if you are able.  You won't miss it and it will possibly save the life of the one that receives it.

Getting blood and playing games on Dad's IPad

Blood and a milkshake--ah finally a smile!!

Surgery

Going For a Walk

Thursday morning Austin had energy and was in a great mood so we decided to take a little walk and explore the hospital.  We found this cute bear in the gift shop and Austin named him "Chubby".  We found the playroom and Austin had fun playing foosball and beating his mom at Sonic Cart.  Austin has to wear a mask when he leaves the ICS floor so he doesn't catch any germs from anyone else.  It is hot and uncomfortable and he doesn't like it but I think he makes him look pretty cool.  I told him he may have to be a doctor when he grows up just so he can wear the mask all the time!  

Chubby the Bear

In the Playroom

In Front of the ICS Unit

 Austin received some balloons and a bag of goodies from some of Dad's co-workers.  The outpouring of love and support has just been amazing.  I guess it takes something as horrible as Cancer to realize how much we are loved.  Friends, family, co-workers, even people that we don't know have sent love, prayers, and well wishes.  I know everyone wants to do something, but just knowing that much love is coming Austin's way really makes a difference and is just awesome.  I hope Austin can feel all that love and be strengthened during the difficult days and weeks ahead.

Enjoying some gifts

We were moved to a new room on the Oncology floor to prepare for Austin's surgery.  It was such a long day waiting for Austin's turn in the Operating Room.  He wasn't allowed to eat or drink anything and by the afternoon, he was starving.  

The long walk to the OR

So finally about 5 pm it was Austin's turn.  We walked down with him to the Operating Room, kissed him goodbye, and watched our healthy, happy kid disappear behind the doors. They did a lumbar puncture and took spinal fluid, drew bone marrow from his pelivs, and placed his "port", a long term central IV that will be used to draw labs and give him his chemotherapy. We had to wait an hour and a half before I was allowed back in the recovery room to see Austin.  He was very sleepy but wasn't in much pain.  When I saw my sweet boy with the newly place IV port in his chest, reality came crashing down around me. Kevin and I walked behind his bed on the way back to his room and I bawled like a baby the whole way.  I'm not sure why that moment finally brought the flood of grief and tears, I guess it made me finally accept what we are up against. 

With his Nurse After Surgery

After Surgery, Still Sleepy

I hated to see him laying in the bed like that.  I felt like the leukemia had finally reared it's ugly head and pronounced it's ownership on my little boy.  It was a very emotional night for me and I admit that once the fountain of tears started, it was hard to turn it off.  The texts and facebook comments of love and support poured in.  You are so loved Austin!!!  So many people are praying for you and thinking of you.  Any one of us would take this horrible thing away from you if we could!  I hate feeling so helpless and unable to fix this!

Diagnosis

We arrived at the Hematology Clinic at 9am on Wednesday, August 29th.  They started an IV and drew blood.  I was impressed with the IV team, they were awesome and helped reduce 

Austin's fears. 

 We saw the Fellow and the Attending and they explained the process.  While Kevin and I waited, Austin was distracted by the Ipad.  He kept asking how long he had to keep the IV in and all I could think was "trust me, longer than I want!"  After about an hour of waiting and worrying, the results came back.  We are for sure dealing with Leukemia.  I can't say I was really surprised at that point, but all the same my world came crashing down around me.  A friend said it best: it's as though your life is a snow globe and someone just shook it up and gave it back to you.  The words "Cancer" and my child don't go together.   We were told Austin would be admitted and would need a lumbar puncture to collect spinal fluid, a bone marrow draw from his pelvis, and placement of a long term IV under the skin in his chest for administration of chemotherapy.  We also had to wait a few more hours to find out what kind of leukemia we would be dealing with.  ALL is more common with a higher cure rate while AML is more rare and more difficult to cure.

After having a chest xray,  Austin was  admitted to the Immunocompromised Services Unit or ICS.  IV fluids were started and we became officially 

"inpatient".  The afternoon was a huge parade of Residents, Fellows, Attendings, Social Worker, Nurses, CNA's and family visiting.  Our heads were spinning with all the information.  At 7 pm the results that we were hoping for came back: we are dealing with Pre B Acute Lymphocytic Leukemia or ALL.  Finally some good news!  The course of treatment is longer (about 3 1/2) years but much of it can be done outpatient and it has a high
 cure rate. 

This is Austin's "Mom!  No more pictures!" look

We took a little walk and found Spiderman just hanging out.  Austin spent the day watching all the TV and playing all the video games he wanted.  He feels like he is on vacation.  I didn't have the courage to tell him about the hell that was coming his way all too soon.  I wish I could shield him from it, prevent what I know is coming. Austin, you are MY superhero!!!

What's wrong with my boy?

To tell you how we arrived with the diagnosis of Leukemia, it is necessary to describe our summer of 2012.  You have to understand that Austin is never sick.  I can count on my hand the number of times we have been to the Pediatrician other than well-child checkups.  He rarely even gets a cold.  At the end of May, Austin was complaining of chest pain after catching a kickball at school.  He made such a fuss that we took him in for a chest xray.  We were told it was probably a pulled muscle.  Then on June 6th, Austin fell while wrestling with his 2 year old brother.  He complained of severe left wrist pain and an xray showed a buckle fracture for which he was given a splint to wear for 3 weeks.  

Austin really didn't let the wrist slow him down.  We went fishing and to the Grand Canyon.  I do recall he complained about hiking and said he was tired, but I assumed he was just being lazy.  Also at this time Austin developed a severe ear infection requiring 10 days of Amoxicillin.

He got his splint off just in time to go kayaking with his brother, Logan.

On the 15th of July Austin started to say that his chin was numb.  A numb chin?  I didn't think much of it, sure it would go away.  Finally on the 17th when he was still saying it was numb, I foolishly googled "numb chin" and scared myself silly with words like "diabetes", "tumor", "leukemia", and "tooth abscess".  I figured the tooth sounded the best-- so off we went to the dentist where sure enough, Austin was missing an adult tooth on one side.  The other teeth were crowding out the stuck baby tooth, creating an abscess.  So the offensive baby tooth was pulled and a 2 week round of antibiotics was started.  The numb chin went away.  

 On the 24th of July Austin fell off a scooter and complained that his leg hurt.  He limped for couple days without the pain going away so we went back for xray, again being told it was muscle strain. 

On August 13, Austin started 3rd grade. He is an excellent student.  He is a pro at math, reads two grade levels ahead, and loves science.  He will tell you his favorite class is PE.  He doesn't love homework, but what 8 year old boy does? He would rather be out playing soccer or baseball. It was about this time that I noticed that Austin wasn't eating much.  His clothes were looser and he would bring his lunchbox home still full of lunch.  He would refuse to eat dinner at all or take a few bites and then go lay on the couch.  On August 18th, we went to Salt Lake for family pictures.  Austin seemed fine running around with cousins and eating ice cream.  The next morning he complained of pain in his right wrist with no apparent cause of injury.  This time we went to the Pediatrician's office and the PA examined him. More xray's were taken, but again the diagnosis was just muscle strain.  They put a splint on the wrist and sent him home.  

On Sunday, August 26, Austin started saying his left wrist was hurting again and he wanted to wear his old splint.  He didn't want to eat any dinner but stayed on the couch the whole evening and didn't play with the other kids.  Monday morning he went to school but after school lay on the couch, not wanting to play or eat. Once again, I found his full lunchbox in his backpack.  When I asked him why he didn't want to eat his lunch he just shrugged his shoulders and said he didn't feel like it.

 Tuesday Aug 27, we again went to the Pediatrician's office where I was ready to do battle to get something done about all this.  This was not my healthy, happy boy.  He was pale and tired, grumpy and not eating.  I wanted to know what was going on!!!  I don't necessarily think that all of the things that happened to Austin over the summer relate, but the whole picture is suspicious of something very wrong.  Our Pediatrician, who I love, was stumped as to what the problem was.  Austin didn't fit any classic symptoms of anything.  I wanted to do some blood work to rule out all the scary things that were rumbling around in my head.  The word "Leukemia" kept coming again and again to my mind but I really hoped I was wrong and even the word "lupus" that our doctor suggested sounded ok compared to what I was thinking.  In hindsight, I just knew deep down it was going to be bad. Our doctor didn't think we would find anything, but agreed to do the blood work to reassure me that all was well. We had the blood drawn and went home to wait for the results.  At about 5:30 our doctor called with the bad news.  He was shocked at the results. Austin's red blood cells were low, his white blood cells were high, his neutrophil count very low.  We were told we needed to head to Primary Children's that night so we could be at the Hematology/Oncology clinic at 9 am the next morning.  How do you pack for a trip like this?  Would we be gone a week or a month?  I just threw things in bags, including a bag of dirty clothes and food that I thought might spoil if we were gone long.  A friend came over and helped Kevin give Austin a blessing. We then packed up the kids and the dogs and headed to Grandma's house in Orem arriving at 1:30 am.  A lot of tears were shed on that drive.  A small part of me hoped that when we got to the clinic we would be told there was a mix up or "he was sick yesterday but look! He is fine now!"  Deep down I knew that wasn't going to be the case.