Rejuvenated - Day 111

In the coaching circles there is a saying for teams who get off to good starts that the season does not officially begin until you lose your first game.  When adversity strikes, the strength of a team's character is put to the test and it is impossible to come out on the other side unscathed and unchanged.  Finding ways to motivate, inject strategy, and walk the fine line of pushing the team to its limits while also not exhausting them nor failing to show the proper amount of support is an ever evolving art form that takes time and knows no fear of failure.  I love the challenge and always embrace the potential of what can be learned from the situation at hand.  The reward for persevering through the adversity, taking the steps to combat the symptoms, and finally stepping beyond to higher ground when the time comes is far greater of an accomplishment than any final score in your favor will ever be.  Before that step forward can be taken, I often find a moment of magic occurs I never saw coming or at least questioned (during times where we're not so strong) if it were ever possible.  As a guy that stands on the sidelines a lot with no direct participation on the field or in this cancer battle, I can tell you these magical moments have the ability to sustain our smiles and rejuvenate the soul.

I would say it was about Thursday evening of this past week where our little girl in every way shape and form of how she was prior to her getting sick showed up again and has been running gleefully through the house all weekend.  She is back to singing and twirling.  Her appetite has returned in full force and she has for the most part slept 10-11 hours straight each of the last four nights.  Her blood counts have obviously come up and we'll get confirmation (we hope) of that on Wednesday with her next scheduled labs at the clinic.  The color has returned to her face and of course her wonderful smile has been dazzling everyone.  My parents were fortunate enough to have planned a trip up this past weekend and timed it perfectly with her upswing of energy.  So, they were able to enjoy the twins in full activity all of Saturday and Sunday.

We went as a group over to Palo Alto High School on Saturday night for the annual LLS "Light the Night" fundraiser and 2-mile remembrance walk throughout the neighborhood streets.  Prior to the walk, there was food and music as well as a heart warming ceremony to honor those we've lost to blood cancer in this community.  This is the first real LLS event we have been to and were immediately taken with the atmosphere.  Due to Ellie's schedule of rest and still slightly neutropenic body, we could not stay for the walk portion of the night, but I have a feeling this is only the first of many LLS events we will be going to down the road.  Polly and I were able to register as Bone Marrow donors, something we have been talking about doing for quite some time now.  The kind man who was volunteering in front of the donor registration tent was cured of Chronic Lymphoblastic Leukemia (the adult version of what Ellie has more or less with a much lower success rate) a few years ago by way of a bone marrow transplant.  You could tell the rejuvenation in his voice was something he'll never tire of expressing.  He is living proof about why these types of events are so important.  We were very lucky to have come across this event and promise to go back.

If Ellie makes counts on Wednesday (which we expect she will), Interim Maintenance will begin on Friday with a Lumbar puncture to put methotrextae into her spine (Hopefully you recall she has had 6 of these done already, including 4 in the Consolidation phase we just finished).  After that, she'll be admitted to the hospital for 3-4 days to get the high dose version of Methotrexate intravenously through her port.  This will be the first time she has had this form of the drug and observation round the clock is required to monitor her liver and kidney functions which could be affected by it.  She will also start taking the nightly oral dose of Mercaptopurine (6MP) which will be daily for the entire 8 weeks of IM.  Needless to say, her blood counts will fall again quite rapidly throughout next week.  So, the amount of energy she has will likely diminish and it could be another 8 weeks until we get days like this again.

But ya know....having a weekend like this has stunned us with her ability to rally, rebound, and renew.  Having finally shed the Vincristine side effects and found a way to patiently wait for her counts to rise, she has survived her Consolidation phase and allowed us all time to take some deep breaths and rest up ahead of the next phase.  We have savored the time in the last four days simply because we are distinctly aware that we know not when days like these will come exactly and that we have all been able to persevere through some very tough times thus far.  It is fuel for the human spirit and makes you feel like you are not just playing a defensive game dodging bullets, so to speak.  Rather, I feel like standing up tonight ready for the next round of the match and when that bell finally rings to get going, I'm climbing to the top rope and droppin' a Macho Man Savage flying elbow before cancer's corner can even move his stool out of the way.

I want to say thank you to the many folks who continue to bring us food for dinner on weekday nights.  I want to say a special thanks to Maggie who has never met Ellie but honored her with a huge orange ribbon on her chest this past weekend while she ran the SF Nike Women's 1/2 Marathon.  I want to say thank you to my buddy Dave who put a sponsorship together in Ellie's honor at his company golf tournament and presented us with the Tee-sign dedicated to her fight.  To my friend Katie and the Sitting Tree organization that held such an incredible event in Ellie's honor in North Hollywood a couple weeks ago.  I receive both anonymous cards and cards written by folks who are friends of friends of friends (who I've never met) offering support and prayers on a weekly basis.  All of these things lift us up and make it easy to keep going with each providing a little moment of unexpected magic that puts us one step closer to a cure.

I want to tell you about a weekend in my life that I will never forget anytime soon which occurred during my freshman year at UCLA when I was fortunate enough to travel with the pep-band up to Boise, Idaho for a set of first round NCAA tournament games in 1995.  The Bruins went into the tournament ranked number 1 in the country, had everything going for them, and presumably this weekend was supposed to be "easy".  After a blowout win in the first game on Friday, several friends and I decided to make a 3 hour trek east for the day on Saturday to go skiing at Sun Valley on our day off in between games.  I skied growing up but never outside of California (mostly Southern) so this sort of wilderness was new to me.  The day was very stormy and well below freezing for most hours with snow flurries.  We decided to head up mid day to the top which was about a 10 minute lift ride from the base.  As we were ascending, the clouds became ominously thick and the wind picked up to the point where all of the lift chairs were swaying significantly.  When we finally got to the top, the lift operator said the top of the mountain was now closed and we should make our way immediately to the bottom.  The wind was still howling and the snow started falling fast and furious.  As we left the lift, I suddenly could not see which way was up, down, left or right.  My first ever White-Out.  Long story short, had it not been for about 4 sign posts that were only visible because we started guessing which way to head (after running into the snowbank a few times)....and a snow mobile rescuer who found us about 30 minutes later, I'm not sure I would be here today.  It was a quiet bus ride back to Boise to say the least.

The next day UCLA faced off against Missouri in the second game.  We had seats right behind the basket as was custom for the band at tourney games.  Still smarting from the prior day's fiasco, I watched them play a horrendous first half and then simply look like they had come up against an opponent that had the ability to deliver the season ending punch.  All that work over 30+ games, all the momentum built up, and it was about to be done on a weekend when I was nearly done.  The situation in sporting terms represented adversity at its finest - almost no time left and down on the scoreboard by a point.  Life can be cruel to people who have worked very hard to get to where they want to be.  Then the magic happened.

A last second shot went in via a "Baby Hook" from a guy, ironically, I went to high school with 3 years prior and was always doubted because of how small he was. Afterwards, the court was stormed, we rejoiced like little kids, and the slow motion I experienced of watching that ball fall through the cylinder from my seat behind the hoop helped put a building block up in my life.  I know I am just talking about a game here, but the turnaround of emotion, the ability to rejuvenate the dream, and the appreciation of where I've come from and what I have to live for to that point was all wrapped into that shot on that particular weekend of my young (and naive) life following a big escape the day prior.  No matter the odds, we savor every moment we can in the present and never stop working for a better tomorrow.  Magic can happen at any moment.  The sacrifice needed can be overwhelming but that absolutely pales in comparison to the reward seeing Ellie's renewed smile come out brighter than ever on the other side.  Bring on the next challenge, we're rested and ready to go.

P.S.  If you'd like to see the famed baby hook shot - Click HERE