Our Nightmare

Polly and I were talking about ways to have an outlet for emotion elsewhere so we can stay strong when we're with Ellie.  Taking into account the changes in our lives in just the past 36 hours let alone the vast many changes down the road that we have yet to comprehend, I am hoping this blog will be a little theraputic.   It also serves as a good way to let you know what's going on.  We recieved several calls, texts, and emails since yesterday and we really aprpeciate the tremndous sense of support.  We're just beginning this journey, so once we get organized a bit....we definately will take you up on some offerings of helping hands.

We have very little control over this situation, which is the most helpless and frustrating feeling in the world.  Cancer has control right now....of the most undeserving and sweetest little girl I have ever met.  I've cried about 10 times today, I am angry, and I am sad.  I've read blogs like this in the past of others going through tough life changing times and it is even still a bit hard to believe that I am writing in my own one now that centers around my own family.  That said, Polly and I will never, EVER give up and you better believe we are vowing to fight as hard as we can.  So, I hope you understand the words written here in the days to come may be hopeful but also may not be very pretty.  I'm gonna take my poetic licensure as author of said blog and let things flow where they may....since this is one thing (all be it small) that I do have control over.  So, you've been warned to either prepare yourself or move on to another blog.

Ellie turned 2 years old on June 4th this year.  We call her El-Belle for short (derived initially from Ellie-Belle in a made up song we sang before bedtime when she was a newborn).  Ever since she was about 8 months old she has woken up in the morning singing in her crib and gleefully sitting up and smiling at us when we come to get her.  Make no bones about it - the girl loves to eat.  If there is a blueberry within armslength or a pile of berrys in which to coerce Timmy to throw her way, they will be gone in seconds.  Her stomach has been big for a while and we figured it was because she was on the "see-food" diet.  She has an incredible attachment to Polly.  Not to say I am left out at all because we do have our time together, but her connection with Polly thus far has been special.  So, it wasn't too much of a surprise when what looked like separation anxiety kicked in in a major way just after Memorial day.  Her sweet smile in the morning had turned to mostly crying when she woke up.

On Saturday, Polly noticed her left eye was swollen like it was a bug bite.  When it hadn't gone away on Sunday, she decided to take her to the doc to get it looked at.  I was away this past weekend and had just started my three hour drive home when she called to tell me she was heading to the doc.  The doc noted her stomach was a little bigger and firmer than he normally sees, she had some bruises on her legs that were peculiar, and did an exam to check her out.  He felt her spleen was enlarged from his exam and ordered blood work done.  He also asked Polly not to leave until the results came back.  I was only halfway home by this point.  An hour later, the nurse asked Polly to give her and ETA for my arrival.  This particular question was the beginning of the horrible pit in both our stomachs as she called to tell me what the doc had asked.  The blood work came back with a white blood cell count 5 times higher than normal, a red blood cell count way low, and a platelet count almost non-existent.  As we know now, along with her enlarged spleen and bruises, these are all of the classic signs and the initial diagnosis was very simple to make.  The news was devastating be it in person for Polly or in the middle of California on Hwy 101 for me when polly handed the doctor the phone (and if another doctor calls me to talk and insists on me pulling over again without telling me why I should pull over or what this is about....well, I'll just keep the next part to myself and make a request to "up" his bedside manner given the same situation again)  Yesterday was the worst nightmare of a day we could have ever imagined since becoming parents.  My daughter has leukemia.  My daughter has cancer.

Ellie and Polly went straight to the Stanford ER to get more blood work done and to meet with the on call Oncologist.  I arrived shortly after they entered the ER.  Timmy had gone home with our awesome neighbors.  It is protocol to go to the ER prior to heading to the hospital.  The one plus side of going through all of Timmy's pneumonia hospitalizations this past spring is that we knew exactly what was going on with getting admitted and what to expect. We are very lucky to live within 10 miles of one of the best Children's Hospitals on the west coast here at Stanford.

Ellie has been very irritable for the past couple of weeks and in her own way was trying to tell us something.  On Saturday night, I left the gathering earlier than most looking to get some sleep to get home early on Sunday and gear back up for the weekly grind with school and the twins.  I couldn't go to sleep for a good 4 hours after I laid down.  It was weird, almost like I had a shot of caffeine before bed (which was not the case).  It was a very uneasy feeling and perhaps an unidentified premonition.

I am just on the tip of the iceberg with information right now, though trust me I will be able to recite all of it to you verbatum in a couple week's time.  Once admitted to the LPCH, we were told that a full diagnosis required a sample of bone marrow.  There are 4 main types of leukemia with the two that affect children being ALL and AML.  The rare forms that are outside of the 4 main ones have very low success rates and scared the shit out of us to read about.  Of the four main ones, the most desired and most common is Acute lymphoblastic leukemia (ALL).   That was what the oncologist had preliminary said this might be yesterday and with the grace of god was confirmed today in Ellie's bone marrow aspiration.  It has a 85-90% success rate with being cured (permanent remission).  We also got good news in that the leukemia had not started to go into her spine yet (where it can hide from the chemotherapy coming soon)

Polly and I feel a little better about this but not much right now.  It is still cancer and statistics will not cure Ellie.  We will get a full plan presented to us tomorrow once they know the rest of the test results -  whether it is the ALL B-type or T-type.  Niether type being better/worse than the other but each require a different course of action when chemotherapy starts.  She will be in the hospital for the next 10-14 days with her initial round of chemotherapy.  They call the first stage of chemo the "Induction" phase meant to kill all current leukemia cells in her body.  Once that is over and her health is good (no fever/infection) she'll be able to go home and begin the outpatient treatment which is twice a week for the next 6-9 months (middle phase of treatment).  If that goes well, beginning early next spring, she'll only have to go in once a month (final "maitenance" phase) with the whole plan lasting in the 2.5 year range.

Today, she went into surgery to have her marrow sample taken, a "pick" tube inserted (much more effective tubes for fluids and blood drawing than normal I.V.), and also had her spinal cord given its first dose of chemo to keep the bad cells out.  She handled it beautifully and though was groggy and grumpy most of the evening, she was very thankful to be allowed to eat again.  Tomorrow she'll get her first big round of chemo to get the Induction underway.

Polly and I decided to use Facebook to make an announcement so you guys know what's going on.  We'll be mainly updating only this blog moving forward.  We appreciate more than you can imagine the love and support you've given us so far.  We have many things still to figure out but we will for sure take you up on offerings to help once we know what those are.  Timmy is doing great hanging with our nanny and Polly's parents for most of the day and then I get him one on one back at the house at night.  I am going to try to complete the final 3.5 weeks of summer school as best I can and then will have 4 weeks off before school begins in the fall.  I work in one of the best faculty groups in the bay area at Serra and we will have a great support system through them in addition to all of you.  Please continue to pray for Ellie and for our family.  We had a few prayers answered today with her test results.  It's working.....ITS WORKING!

My youth pastor in Long Beach growing up had a banner in his office that hung by the door he walked in and out of every day.  It read "FIGHT THE BEAUTIFUL FIGHT"  I have often thought of this in terms of tough moments at work or problems of everyday life.  Never more true than right now.  This is the fight of our life....and there will be nothing we won't do to save our daughter.  In this particular war, Cancer has struck first.  But in response to the initial attack, I leave you with this statement with mild references to a popular Q. Tarantino film in the 1990's that sums up a little about how I feel:

Dear cancer - This will be a "shock & awe" style campaign from our end, so be warned.  Once the drugs knock you down, we will come looking for you.  We will find you.   And then we're gonna get MEDIEVIL on yo' ass.

More soon.