ONE YEAR!!!!!!

A year ago today (May 31) Spence busted out of the hospital once and for all....

 

 At that point I thought the hard part was over.  But I was wrong.

Everything about leukemia was out of our control.  Him getting it was out of our control.  His treatment was out of our control.  And whether or not the treatment was successful was out of our control.  All we had to do was pray and support him the best way we knew how.

Then he came home and suddenly everything seemed to shift back to us.  The doctors told us that his chance for relapse was quite high, so we've found ourselves celebrating each milestone  with a somewhat reserved enthusiasm and a pervading worry about whether we are doing enough to "help" him stay healthy.

Much to Spence's own chagrin (and teenage appetite) that worry has led me to keep adding things to the list of what  we need to change to keep him healthy.  We've thrown away all of our plastic dishes, I stopped buying processed meats, banished artificial colors and sweeteners, started baking our bread, grinding wheat, and I still sometimes wonder if we should move further away from the freeway.  And yet deep down I worry that it's all too little, too late and can't help but wonder if anything would be different if only I had started all this sooner.

Glen has felt the same helplessness that I have since the end of Spencer's treatment, but has battled it  in a much different way than me.  Instead of selfishly just trying to keep it away from our family like I have, he has chosen to battle against leukemia by putting his heart and soul into finding a cure.  He has tirelessly fundraised over $10,000 all the while training for a marathon, which he ran in March.  Now he is in NY for a 108-mile bike ride which he will ride in the morning.

It seems only apt that he is riding to find a cure,  the day after Spencer's anniversary for being cured.

I think we will celebrate big with some homemade bread and organic peaches....and maybe some ice cream!

Go Glen!   Yay Spence!  

This is the senior ad I created for his HS yearbook.

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He did it!

After months and months of training and fundraising, he did it!   

On Friday night we went to a Leukemia and Lymphoma Society (LLS) inspiration dinner where Glen learned that, despite not quite reaching his goal yet, that he had placed third on his team of over 100 participants for fundraising amounts. 

After a pasta dinner to give the runners some good fuel, they had some speakers lined up to help inspire the team before their big race.    Immediately following a very entertaining writer from Runner's World (who also happens to be a huge supporter of LLS), it was Glen's turn to give a short presentation about the human side of the purpose of Team in Training.  Glen brought our family picture taken during Spencer's treatment and shared a bit of our story.  He closed by reading the "Little Soul," (that never fails to move me to tears) and thanked everyone for all they were doing to make a difference in the fight against blood cancers.  He returned to his seat and looked up to find the entire room giving him a thunderous standing ovation.  It was a proud moment. 

He went to bed that night with a nervous excitement about the upcoming race.  Saturday morning dawned early but happy, when Glen learned that overnight he'd met his fundraising goal.  It got the morning off to a great start and he was cheerful and chipper as he headed out with his brother in the wee hours of the morning.

I had every intention on going down to cheer him on and watch him finish, but alas our old car wouldn't start and I ended up having to  drive all five kids to their five different activities  (instead of Spencer being able to help with the driving).   At least I thought to take this one picture as he hopped out of the car on the way into the Metro station. 

Much to the happiness of 35,000+ runners (and a whole bunch of mulch haulers), the predicted rain and cold held off until the late afternoon and they actually ended up with a beautiful day for physical exertion--not too warm, not too cold, and not a drop of rain until it was all over.  Glen wasn't aiming for any specific time.  In fact his quote when asked is that he hoped to finish the race the same day he started, which I'm pleased to say he accomplished without issue!   

He and his brother came home exhausted and famished, but happy to be done.  We spent the rest of the day picking up kids from their various activities and trying to make sure that the marathoners did not starve.    Glen's brother Alex left bright and early on Sunday morning and now Glen is turning his thoughts to his 100 mile bike ride coming up on June 1st. 

Go Glen! 

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Making a Difference in Our Own Way

There is no more helpless a feeling in life than to see someone you love so dearly in pain and suffering.  You can sit devotedly by their sides, praying and longing with all your heart to somehow relieve just a little bit of the pain they're facing, but in reality you know that there is nothing you can do.  He will get better.  Or he won't.  It is in God's hands.

I can't even tell you how heartbreaking it was to watch Spencer have his independence ripped out from underneath him in the very moment his friends were stretching their wings.   Instead of taking his college entrance exams, he was getting daily blood tests and monthly bone marrow biopsies.  Instead of participating in sports, he was lethargically dragging an IV pole around the hem/onc floor of the hospital.  Instead of getting his driver's license, he was talking to a dietician who was giving him hints to help him gain back a little of the 40-lbs he lost during his treatment.   

With the new perspective this experience has brought us, we are fully aware that none of what he missed really matters in the scheme of things.  He is healthy again and that is enough.   

However his recovery is  not all that matters.  While the prognosis for people with  Spencer's type of leukemia (AML) has improved dramatically over the years, its cure rate is still barely over 50%.  While we rejoice in the fact that Spencer is in happy part of that statistic,  my heart breaks to think of how many of our hem/onc friends that haven't made it. 

There's Sydney, a 12-year-old girl whose room was next door to Spencer's for part of his treatment.  She fought AML for over a year and never made it into remission long enough to get to go home for even a few days.  A whole year her mother sat with her in the hospital and eventually left there empty-armed and heartbroken.  Then there's 5-year-old Ryan whose mother we met online.  Their family was stationed overseas when he was diagnosed just a few months before Spencer.  I cheered with her when he went into remission and was released from the hospital.  Sadly though, his remission was short-lived and he passed away just days before his sixth birthday.  He never even went to kindergarten.   Then there's Jeanie.  I've never mentioned her here before, but she was a 10-year-old girl in Cami's 5th grade class who passed away from AML almost five years ago.  She was the first child I ever met with cancer and I remember visiting her in some of the very same rooms that Spencer stayed in.   It still think of Jeanie and her grieving mother often.  

In fact I think of each of those families with empty places at their table this holiday season.  While I  can't do much to take away the pain that Sydney's, Ryan's, and Jeanie's families face each day without their child, Glen and I feel committed that we have to do something to make a difference.  We are not doctors or medical researchers who can find a cure ourselves, but are committed to help the cause in our own way. 

We may not look it, but both Glen and I are endurance athletes at heart.  Right now we are out-of-shape endurance athletes, but we are looking to fix the out-of-shape part while making our own contribution to finding a cure for Leukemia. 

Glen is committed to running a marathon for the Leukemia Lymphoma Society in March and also a century bike ride for them in May.  I will run a half-marathon while he is running the marathon.  As part of that commitment, we have ambitiously decided to raise as much money as possible to help in the cause. 

Please consider visiting Glen's fundraising page and making a donation.  It can be small or large.  Anonymous or not.  Please help us in our quest to make sure that there are more happy endings like Spencer's. 

(Let us know if you are also interested in joining with Glen to form a team ("Team Spencer") and doing your own fundraising. Or, if you are comfortable with it, "Share" this link and help get the word out.  Thank you, thank you for all you have done to help us get through our difficult season and for helping in our ambition to further the efforts to find a cure for Leukemia.)

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"I am only one, but I am one. I cannot do everything, but I can do something. And because I cannot do everything, I will not refuse to do the something that I can do. What I can do, I should do. And what I should do, by the grace of God, I will do."  Edward Everett Hale