Difficulties - Day 3

No one even remotely suggested this would be easy.  Watching Ellie try to bravely endure the chemo side effects that have started to show themselves now is very difficult.  The war inside her is moving quickly with the drugs getting the upper hand very fast (that's a good thing).  You wonder what makes cancer so dangerous when the bad guys wave the white flag as if they wanted to be captured.  Ellie's white blood cell count which peaked somewhere in the 85K range on Monday afternoon has been reduced now to 2200 (so you know - 10K is normal for a child her age).  She recieved a platelet transfusion on Monday night which I think has given her a little bit of a boost but it also continues to drop as a casualty of circumstance.  As a result, her current immune system rating of 400 has offically fallen below the minimum level for healthy of 500.  So, we begin a solid 2-3 week period now where we must do everything we can to keep germs away from her.  Not so scary in the hospital, where I think they even hand santitize the broccolli.  But they are talking about us possibly being discharged by mid next week which makes Polly and I very nervous in terms of germ control.  Thank god its summer time, another small but significant silver lining.

The biggest concern right now is trying to ease her misery.  She has been very upset alot of the last two days which we were told is the major side effect of the Dexamethsone steroid she is taking.  The hospital has a nice model train setup out in the hallway where kids can watch from various locations and push buttons on the sides of the glass around the perimeter which make various noises.  This has produced, all be it brief, distraction a couple of times today.  We also can go outside in the inner courtyard and show her the water fountain which is a nice walk for all four of us from the room (the four being - Ellie, Polly, the mobile IV machine on a pole, and I).  We haven't seen many other kids venture out of their rooms so we're starting to wonder if we're the only ones who do these walkabouts.  One of the things about the chemo drugs is that they cannot sit in her system too long once they been fully digested because of their level of potency.  So we're hoping desperately to achieve a digestive P(rocedure) O(f) O(ptimal) P(recision), if you will, so that yet another uncomfortable doctor intervention isn't necessary in the next 36 hours which neither Polly nor I want to have to put her through.  Funny these procedures were never an issue when I would watch her and Timmy by myself on evenings when Polly works late.  In all seriousness....it is so tough seeing her poked and prodded with so many things.


To help kids take their medicine, LPCH actually has a really great method they sent us to help out in the form of "Chemo Duck".  It is a stuffed duck dressed in a robe and scrub cap and has his own PICC line coming out of his arm just like Ellie.  I nicknamed the duck "Phil" though Ellie was not very amused by this.  It does not quack, but it comes with a doctor's box of tools like a blood pressure cuff, an ear scope, stethoscope, and a fake syringe.  This was pure genius whoever made this up.  Ellie loves it!  So, "Phil" gets a good 4-5 Chemo shot-in-the-arm treatments at a time from Ellie and then she turns and much more willingly accepts her 1 treatment from our nurse.  (BTW, at this rate Phill will be cured by 8am tomorrow morning).  The same guy who gave us the duck also runs a playgroup a couple times a week in the morning and evening where both sick kids and healthy siblings are allowed.  Timmy enjoyed this alot.  He has been so great through this ordeal so far.

We continue to try and look at things day by day.  The future seems very overwhelming but it is nice to have a rough date set of around July 28th or 29th as our first major milestone where Ellie's marrow will be tested at the end of her Induction phase.  Polly and I's faith in our daughter's fight need goals along the way to look forward to.  It certainly won't be the end by a long shot, but it fills us with hope.

I want to leave you with a poem that a dear friend from my close-to-the-heart Bruin family reminded me of yesterday in an email.  I can't believe I forgot about it though I guess you could say we've been a bit busy this week.  I used this poem as one of 2 main motivational centerpieces in my team's lockeroom at Serra during the 2009-10 season.  Prior to the season beginning I had been studying some of Nelson Mandela's teachings and methods he used to persevere while imprisoned for so many years.  This was a poem he read to himself and several other prisoners to help keep hope alive over many occasions.  Its title is "INVICTUS" which is latin for "Unconquerable" written by William Ernest Henley:

INVICTUS

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

 

 

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

 

 

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

 

 

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Thankyou, Vince

Empowerment - Day 1

Today was the first day of the rest of our lives.  It is cliche but I like it.  Both Polly and I felt like we had our feet back under us a bit more today.  The shock factor is turning into more of a day to day determination now and after meeting with the doctor for more than an hour today, a battle plan is in place to go at this thing with everything we've got.  You are very much in luck - we as a family do not typically believe in posting pictures of our kids in a public online forum (i.e. facebook), but we think this situation merits an exception for just one photo.  So, to the right here is our beautiful El-Belle just before her second birthday a little over a month ago.

Ellie got her appetitie back today and was more energetic since the anesthesia from yesterday's procedures is now completely out of her system.  She was somewhat uncomfortable for alot of the afternoon but a little Tylenol helped out.  After dinner, we took an excursion down the hallway of the BASS unit of the wing we're in.  For some odd reason, she and Timmy love to dig through my wallet (I know - yer saying wait til she's a teenager).  Having moaned for a good two hours, when I pulled my wallet out in the sofa area of the wing during our stroll, she promptly sat down and started pulling items out with a huge smile on her face.  She laughed for the first time in two days we we found various pockets to stuff daddy's various ID cards into and for a second, my worries were gone.  Being able to laugh a bit, as I did with her and a while earlier with my summer students, is nice outlet for stress.

We met with one of the main attending docs at 4pm as expected to get more test results and go over the official plan for the next 29 days.  Ellie's white blood cell count had dropped from 85K to 61K since yesterday.  This is a good sign because it means the small injection of chemo into her spine 24 hours ago is starting to kill the bad guys.  So, now we begin our Induction phase where the 4 pronged armed forces of chemo drugs go to work.  The process is 29 days long and today is Day #1.  One of the medications is given only once in that span, two others are given four times, and the last one (a steroid) is given twice a day the entire period.  After the 29 days, we'll have a bone marrow aspiration again and see where we are at.  The expectation and HOPE is that all active leukemia cells will wiped from her system by that date.  She'll also have a couple other medications to take to help with the side effects.  We've been told the proiminent side effects will be crankyness, fatigue, hunger, and hair loss.  The first half of this phase will be done in the hospital and the second half will be done on an outpatient basis if we can keep any cold bugs away.  The problem with killing the bad cells is that the current good ones die too and thus her immune system's ability to fight germs for about two weeks will be very low.  By day 29, her good cells should be back up to normal numbers.  The final diagnosis for Leukemia type was - Acute "B-Cell" Lymphocytic Leukemia.  The designation of "B" type further reinforced that she has the most common form of Leukemia found in children her age.  She recieved her first set of meds tonight and the counter offensive has begun.

Having a plan in place now has given me my first sign of empowerment with this process.  My 14 years of coaching has been a ever evolving refinement of the circular methodolgy of analyzing, preparing, and executing.  When I have had a plan I believe in put into place along with experienced components that will anticipate every move within that plan with my full confidence, there is very little room to beat me.  Polly and I put our signatures on the consent form after the meeting today with infinite confidence we are covering every angle of this horrible disease.  Day #1 was a good day.

It is tough for Polly to be by herself in the room for long stretches when I cannot be there, so please feel free to drop by LPCH if you ever want to.  I'm not liking the silence of this house late at night right now either but I have Timmy sleeping soundly downstairs to keep me at ease.  The one rule we are holding ourselves to and hope you will understand as well if you come to visit - No tears in front of Ellie.  We have found moments to lose it in other places with hope that it will release enough stress to keep us strong during the times she is watching our every move.  I know I am telling you something you all ready know.

The logical, scientifically centered, part of me knows full well that asking the question "Why us, why Ellie?" lead only to banter that will never directly help solve the problem at hand.  Science follows such methodical steps in finding solutions.  If there are no facts in which to base your opinions and conclusions on, then it can be a waste of time in trying to discuss matters because the conversation won't go anywhere toward meaningful progress.  I know that.  The emotional and sometimes irrational thinking part of me cannot help those questions from coming to the forefront of my hourly thoughts this week.  I probably tell some of my students that life is "not fair" about 3-4 times a week.  I can say that as much as I want to during the hustle and bustle of a normal day but it will never comfort me on how cruel life has been for my sweet, innocent, and unsuspecting daughter.  You may or may not know our son, Timmy, was born with a one in a million chance tiny genetic mutation in the FOX 2L chromosome that gave him a condition called Blepharophimosis (BPES) affecting the shape (but not vision) of his eyes.  It is 100% cosmetic in nature but will require him to have multiple eye surgeries over the course of his lifetime (one in a friggin million!).  Neither case with Timmy or Ellie was passed down from Polly and I.....it was just a chance of nature.  Why?

We'll eventually be at peace with this, I know that, so please understand.  Coaching demands you improvise at a moment's notice all the while keeping your eyes on the bigger prize at the end.  Another cliche, but very true - we're in a marathon with Ellie, not a sprint.  Now that we've started to adjust ever so slightly to the mile markers ahead, believe me we're ready to compete.  And we're ready to compete like we've been here before.  "Why?" won't matter when we finally see Ellie attend her first day of Kindergarten.

A very close friend of ours will be emailing many of you with small ways you might be able to help us over the next month since so many have asked.  I cannot express to you enough how much it means to us.  Your prayers lift our spirits and supportive voices behind our firepower is deafening.

Hey, Chemo Drugs - Give 'em HELL!

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.