2009 « It's Not About the Why, It's About The Win

Good Riddance 2009!

December 31, 2009 at 7:53 pm | Posted in -Favorites, 12/2009 | 2 Comments

I’m sure this won’t come as a shock to anyone, but I am not sad to see the end of 2009. Though we’ve had a year of tremendous challenge, I’ve learned a lot too.

I’ve learned that to be truly grateful for what you have, you must first come face-to-face with loss.

I’ve learned that sometimes optimism is the only defense we have against doubt and fear.

I’ve learned that joy is felt deepest when it follows despair.

I’ve learned that a smile is a very powerful thing.

I’ve learned that challenges lead to choices, and while the challenges are usually outside of our control, the choices rarely are.

I’ve learned that faith, however you choose to embrace it, is the foundation of hope.

I’ve learned that a little worry goes a long way, and too much of it doesn’t take you anywhere at all.

I’ve learned that the greatest gift isn’t a present, it’s simply being present.

I’ve learned that the kindness of family warms the heart, the kindness of friends lifts the spirits, and the kindness of strangers opens the mind.

Bring on 2010… Happy New Year everyone!

Merry Christmas!

December 24, 2009 at 4:18 pm | Posted in 12/2009 | 3 Comments

On this Christmas Eve, we’re so grateful that both boys are doing very well. Andrew is battling very low platelets right now, so we’re being extra careful about what he does. Other than that and some intermittent nerve pain, he’s feeling pretty good. He’ll have his second “maintenance” treatment on Monday, including a spinal tap, chemo into his spinal fluid, and IV chemo. His platelets are so low they’ve had us stop his oral chemo pills until they check his counts again on Monday. This is a little worrisome to me, but I’ll try not to obsess about it. We’re hopeful that he’ll be able to return to school soon after break, once the dosages of the maintenance drugs are stabilized.

Michael continues to get stronger all the time through weekly physical therapy and special daily exercises that focus on balance and strength. After the first of the year, he’ll start weekly sessions with a speech and language therapist to address some “high level executive function” issues. In normal interaction with him, you’d never know that a little more than five months ago he was just waking from a coma, unable to walk well, talk clearly, or process the world around him. The brain is a crazy thing, and there are still some parts of his that aren’t quite working the way they should. We know with time, patience, hard work, and special physical and learning therapies, he’ll soon be stronger than ever before.

Even though they’re older, the boys are very excited about Christmas and, of course, the presents under the tree. I noticed there were a few under there for me, too, but I know that the greatest gifts don’t come in pretty wrapped packages. My only wish for myself this Christmas was to see Michael’s smile and to have Andrew feel well enough to celebrate. I have both, and that’s all I need.

My wish for others this Christmas is that they treasure this day, and all days, as the gifts that they truly are. For those fighting illness or recovering from injury, I wish for strength and courage. For those spending Christmas without someone they love, I wish for peace and comfort.

Merry Christmas everyone!

Could NOT get Andrew to cooperate and give me a good smile -- but that's okay, at least he feels good enough to be difficult.

In Tribute

December 15, 2009 at 9:58 am | Posted in 12/2009 | 2 Comments

Keith Ford was a hero among heroes. His love of life was contagious, his spirit courageous. For many, he was a beacon of hope in a sea of fear. Though he is gone from this world, his legacy of strength has paved a path of hope and faith that will redeem us all.

To all the Fords – thank you for sharing Keith with us, please know that you are loved always and especially during this time. To Keith – thank you for giving of yourself so boldly, the inspiration you provided others touches the soul.

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Happy Birthday Michael!

December 13, 2009 at 12:51 pm | Posted in 12/2009 | Leave a comment

Michael turned 14 on Friday. 14?! When did that happen? He’s about as tall as I am, his voice sounds just like his dad’s, he’s almost 170 pounds, and other than that apparently fragile skull of his, he’s solid as a rock. Even after everything he’s been through, he’s just like most every other kid his age — he’s on top of the world, invincible, untouchable.

When the boys were little, we used to spend countless days at different parks around the city. Every day was a new adventure, and we were so lucky to have amazing friends to share those days with. One day, when Michael was probably 4ish, maybe 5, my friend and I were sitting up on a hill overlooking the playground. We could see the boys, but neither of us were the doting type, at least not at the park. Suddenly, we saw another mom dart to the jungle gym, panicked. Turns out, a little boy was stranded on the top of the roof above the landing to the slide. She frantically climbed up the side of the structure and “rescued” a very confused little Michael. As she set him down on the pebble rock and congratulated herself for saving his life, she scanned the other moms in the park, undoubtedly looking for the irresponsible one who was raising a monkey, not a boy.

I didn’t speak up or go hug her for her heroic act. I was too busy watching Michael get on the roof again. Before she even noticed, he had jumped from the roof to the monkey bars below. He knew what he was doing, and I knew he could do it. He’d always been that way. He could escape from his crib and climb to the top of the dining room table before he could even walk. It’s just who he is. Sure, he gave me a scare a few times, but I never truly worried about him – ever since he was a baby, I just always felt this very strong sense that Michael would be okay, no matter what.

That changed the night of his accident. Everything changed the night of his accident. The confidence I always had in his invulnerability was shattered as I watched him comatose in ICU, a machine breathing for him, a metal bolt sticking out of his forehead, a face so swollen I barely recognized him. Would he make it through the night? Would he wake up? Would we ever have our Michael back? The doctors didn’t know, and my ability to be so sure that it would all be okay was gone, abandoned on that innocent corner at the bottom of my parents’ hill.

But here we are, a few days shy of five months later. He still has some healing and recovery to do, for sure, but Michael is back. Michael, who had to re-learn to eat, to speak, to walk, is now a seasoned teenager looking forward to high school, girlfriends, driving, college, and the whole world ahead of him.

I wonder sometimes what role Michael’s early years played in his accident. Did the climbing and jumping and believing he was Tarzan when he was four make him believe at 13 that he could take that corner faster than he should have? I have always believed that a kid has to test his own limits to find out where they are. Sure, climb that tree. Jump off that rock. Pretend you’re superman when you launch off that swing. Be the boy you need to be, what’s the worst that can happen?

Now that I’ve been so close to “the worst,” I wonder how much difference it would’ve made had I traded in some of those “go for its!” for a few more “hold on there buddy, slow it downs.” Maybe I can make up for it now. Michael, I love you. Slow it down, buddy, slow it down.

Dear Jack

December 6, 2009 at 11:29 am | Posted in 12/2009 | 1 Comment
Tags: andrew mcmahon, jack's mannequin, leukemia

Last night I had a little time to myself. Mike was off with some friends husking corn or whatever Nebraska fans do during a college football championship game, and the boys and I each had movies we wanted to watch that didn’t interest anyone else. So, we all sat in front of different TVs doing our own thing. It bothered me a little bit that we were so disconnected from each other, but I think we all needed a little alone time. I know I did.

My movie was Dear Jack, a documentary about musician Andrew McMahon of the band Jack’s Mannequin. I’m pretty out of touch with today’s music world – if my kids don’t listen to it, I never hear about it. And Andrew McMahon isn’t one they’d listen to, so neither had I. When I saw him perform on The Daily Show last week, he really piqued my interest.

It wasn’t just the music I found interesting, it was also the story behind the music. On the day Andrew McMahon finished recording the first Jack’s Mannequin release, at 22 years old, he was diagnosed with leukemia, the same form that my Andrew has. He documented his treatment – from the positive “I’m gonna beat this thing” moments to the dark, tearful “I’m really scared” moments. In the movie, that raw footage is intermingled with interviews of his family and friends, shots of his performances, and a lot of great music.

This movie was difficult to watch, for sure, but way worth it. It’s a must-see for anyone who wants an insider’s view to leukemia treatment, or cancer in general. Andrew McMahon did an interview with CBS where he explains why he did the movie, and what he hopes will come of it. What an amazing and talented man:

So many people’s lives are critically changed by cancer. It seems like I hear a new story about it every day, and each one takes a little bit of wind out from beneath my sails. I love Dear Jack because it shows a side of cancer treatment that many never see. It shows what I can’t convey in a blog, or a phone call, or a chat with a friend. It shows that for every moment that we’re profoundly positive, there’s another moment where we’re overwhelmed by fear. For every bubbly “It’s not about the why…” there is a very powerful “What if…” lurking in the darkness. For every canned “We’re doing great,” there’s a little voice in the back of my head that says “Are we, really?”

One of my favorite lines in Dear Jack comes from Andrew McMahon’s mom when she says that God gave her Andrew twice – once when he was born, and once when he was cured. I told my Andrew about that line and he said with genuine inquisitiveness, “I wonder how many times God will do that for one person.” I wonder that too, Andrew, every second of every day.

Andrew with the face-painting he had done at the Make A Wish Holiday Shopping event on Friday.

Michael, blowing out 14 candles! We did a little celebration a week early while my parents were in town. It's hard to blow out candles when half of your mouth still isn't working quite right!

One down…

December 1, 2009 at 10:04 am | Posted in 12/2009 | Leave a comment

30ish to go! Andrew did fine with his first monthly treatment in Maintenance yesterday. The spinal taps seem to be getting tougher for him each time, though, so hopefully the headaches and backaches won’t be too bad this time around.

His next appointment is December 28, which is good because it should mean he’ll feel good for Christmas. It feels weird not to have to go to the clinic every week — a good weird, but weird.

Last week I became acquainted via email with a mom whose kids are new to our school this year and whose son Jonathan also has leukemia. Just as Jonathan was about to finish treatment for a relapse, he sadly relapsed again. I tried to visit them yesterday when we were at the hospital, but Jonathan had been moved to PICU. I know how intense the ICU experience is, so I didn’t want to disturb them there and left some gifts with the nurse instead.

My heart absolutely breaks for this family who has been through so much already. As you all think about Andrew and Michael’s journey, please also call out the prayers and positive thoughts for Jonathan and his family.

Happy December, everyone.

Kristen

Thanksgiving

November 28, 2009 at 12:23 pm | Posted in 11/2009 | Leave a comment

What’s Thanksgiving without a list of what we’re thankful for? So here goes another top 10:

10. Sunny Colorado days
Sure, sometimes our snot freezes and we can’t get out of the driveway, but most days, even in the fall and winter, are sunny and bright.

9. Employment
Like it, love it, or just tolerating it some days, we’re thankful we have jobs and very supportive employers and colleagues.

8. Health insurance
Speaking of jobs, we’re very grateful Mike’s comes with good health coverage. Many people can’t put that on their lists this year, and something’s just flat-out wrong with that.

7. Friends
We’re beyond thankful we have such an amazing network of old friends, new friends, and virtual friends who we may never even meet but appreciate just the same.

6. Family
We had a double-whammy Thanksgiving — one with Mike’s mom, step-dad, and step-sister in Colorado Springs, and then another with my family up at my parents’ place in the mountains. Still eating leftovers, still lovin’ every bite.

5. The dog
The boys and I were gone all week and we really missed good ol’ MAK! There’s just something about a rescue dog that makes you feel doubly appreciated and loved.

4. Woodrow Wilson Academy
We certainly are the highest maintenance family to ever walk through those doors, and yet they still welcome us every day. From home-bound schooling support for Andrew to curriculum modifications that correspond to Michael’s healing brain, we’re grateful that WWA puts the unique needs of our kids (and all their students) ahead of anything else.

3. The Children’s Hospital
Everyone we’ve met at Children’s has made us feel comforted and taken care of. Andrew’s team in the Oncology Clinic may look like doctors and nurses, but they seem more like angels to us.

2. Smiles!
Michael’s is almost completely back! (Guess I got my Christmas present early!) He’ll see the eye doctor on Friday to find out if the gold weight in his eyelid is still needed, and he has appointments with his rehab doctor and ENT surgeon in early January for more assessments of his progress. Michael is also still working hard at physical therapy, and they’d like to continue to see him for at least a few more sessions. Next Saturday he has an extensive evaluation with a speech therapist to assess the “high level executive function” issues that are affecting his problem-solving skills at school.

1. Maintenance!
Andrew’s ANC has rebounded from 32 three weeks ago to over 1600 this week. He needed it at 750 to officially start the maintenance phase of his treatment, and we’ll kick that off on Monday with IV chemo (Vincristine), spinal tap with chemo (IT methotrexate into his spinal fluid), daily oral chemo (6-MP), weekly oral chemo (PO methotrexate), and a 5-day steroid pulse (prednisone). With some variations, this cycle will repeat every 28 days until about July 2012.

Hope everyone had a great Thanksgiving!

Michael and Andrew at Grandma Shirley and Grandpa Bernie's in Colorado Springs.

Hot Dam! Here's the bald eagle we saw on the 11-Mile Dam road through the canyon.

Maintenance, Where are You?!

November 20, 2009 at 7:34 am | Posted in 11/2009 | Leave a comment
Tags: ALL, Cancer Links, childhood cancer, leukemia, maintenance

Just a quick update on this chilly fall morning when I should still be sleeping… Andrew woke up with leg pain about 3:45, and of course I couldn’t get back to sleep. Hating that!

Anyway, Andrew is still on delay. He’s officially done with the evil that was “Delayed Intensification” (yippee!), but can’t officially start Maintenance until his ANC (a measure of immunity) climbs to 750. He’s at 476, up from 280 last week, and 81 the week before that, and only 36 the week before that. So, slowly but surely, he’s moving in the right direction. Because of the holiday, we’re now scheduled to start maintenance Nov. 30. I don’t know what that 2.5 year phase will be like – just one more thing we have to play by ear. Our hope is that he will really start to feel better so that he can return to school at least half-days after the Christmas break. I don’t know who needs that more – him or me!

This week we’re sending many thoughts and prayers to our friend Keith Ford. He’s back on the cancer battlefield, fighting strong, and is currently in the hospital after some very difficult weeks and scary complications. We all very much enjoyed the benefit his friends and family held for him last weekend – the kindness that overflows in this world doesn’t get the attention it deserves, especially these days.

Hope everyone has a wonderful Thanksgiving – there are indeed so many things to be thankful for.

Andrew with his cousins' new puppy, Lieutenant

A little blurry of a picture, but... look at that smile!

My brother and his family came up from Austin TX to attend Keith's benefit. Here's Sam enjoying his first ever big snowstorm!

The Year 2012

November 7, 2009 at 2:14 pm | Posted in 11/2009 | 1 Comment

I hadn’t really thought much about this day, and now that it’s here, I really thought I’d feel more relief, less stress, and, if nothing else, a sense of – I’m not sure what – maybe accomplishment? But I don’t feel any of that. Now that the magical day of Andrew getting to the Maintenance phase of his treatment is finally here, I feel just as scared as ever. This is, after all, when a reduction in the chemo may give the dreaded relapse monster a chance to rear its ugly head. The mere thought of doing this all over again is suffocating. Or maybe I feel this way because I’m just still reeling from this last phase which was Andrew’s toughest battle yet – the first half was dominated by severe and debilitating steroid pain, and the second half led us to four blood or platelet transfusions in less than a week and a hunger strike that’s still holding strong. I don’t know… maybe today’s fear is coming on strong because the next milestone we have, the next goal we have to shoot for, is the end of his treatment plan entirely, and that’s not until at least July 2012.

July 2012. Holy-moley, that’s a long time from now. Andrew will be 13, going into 8th grade. Michael will be 16, going into 11th grade – maybe even driving?! Maybe that’s what I should really be afraid of — two teenagers in the house?!

I guess maybe I’m putting the cart before the horse thinking like this. Does it really matter whether Andrew will be done with treatment three months or three years from now? Maybe not, because the means to get to that end still require a pace of only one day at a time.

Today, Andrew’s counts are awful, so the pace feels even slower. The transfusions he’s had in the last week have helped, but he’s still not making his own blood and platelets as quickly as he should be. Yesterday’s blood transfusion didn’t go so well – he had a new reaction which was so severe they had to stop the transfusion and he only got a half-bag of the goopy red juicy-juice. So we’ll go back for counts on Monday – maybe his bone marrow will wake up from its nap over the weekend and start replenishing his body on its own. His ANC (immunity) is at a critical level – anything under 500 is very risky, and he’s at a whopping 36. One more reason to just take things at a snail’s pace right now.

Michael’s also learning to take things slow – physical therapy is challenging, but he’s working hard every week to improve the strength and balance on that right leg. His smile creeps up a little more each day, and he now even has a little bit of movement on his left eyebrow. Some of his recovery has been by leaps and bounds, other times we’re taking baby steps. But either way… it’s progress. We owe so many thanks to so many people for sticking with us for so long already.

One more random thought about 2012 that I just have to say out loud…. If Andrew goes through over three years of treatment to get to that year, and this end-of-the-world-Mayan-calendar thing really is true…. man, is that going to piss me off.