Three years ago this month, Gracie and I geared up for an all day event at the clinic. She was beginning Delayed Intensification, the phase of treatment that really, literally takes the body near ground zero. Just enough chemo to (hopefully) kill the cancer but not you.

Her immunity wasn't completely destroyed yet, so we got to sit in a larger, more communal area rather than one of the little rooms designed for highly immuno-compromised kids. Next to us was a little girl named Megan and her mom. Megan was 5 years old and completely bald with a smile and a wit that could knock your socks off. She so reminded me of my little three-year-old, and in fact, the two of them had a sweet little camaraderie over IV bags and The Fox and the Hound.

Megan's mom was carefully tracking "treatment events of the day" in a journal. We started swapping stories and I came to discover that Megan was actually undergoing her second round of chemo. She had been through the standard 27-month treatment for ALL (acute lymphocytic leukemia, same type as Gracie's), she was off of it for 6 months, and then she relapsed. And there she was, 5 years old, starting the whole process all over again. This time with stronger doses, making her sicker than ever.

Inside, I wanted to throw up. So selfish, but I really couldn't take it.

When Dr. Cook (Gracie's oncologist) began practicing some 28 years ago, childhood leukemia was a death sentence. He now is able to happily tell his patients and their parents that there is an 84% survival rate. Eighty-four percent is miraculous, considering there was absolutely no cure less than thirty years ago.

And 84% of the time, David and I wipe our brows and our tears in relief, knowing that Gracie has made it.

But then there is the other 16%. And as much as we'd like to be relentlessly optimistic, sometimes the 16% looms large.

So last night, I randomly switched to the news right before going to sleep (I really rarely do that). One of the top stories was about Megan.

There she was, twinkling eyes, dazzling smile, and still completely bald under a sweet knitted hat.

The story was about her SIX YEAR STRUGGLE with leukemia. She has had another relapse and is now waiting for a bone marrow transplant. American Idol star Jason Castro came to Colorado Springs to do a benefit concert to raise the money for this outrageously expensive procedure.

Megan was too sick to go to the concert.

Jason came to her house to sing to her.

I lost all of my capacities and sobbed with almost as much grief as if it were Gracie.

Gracie and Megan share the same brilliance, the same courage, and the same struggle to be part of the 84%. Gracie has been fighting for 3 of her 6 years of life and dear, sweet Megan has been fighting for 6 of her 9.

God please let them both be in the 84%.

Please.

And what if in the next 28 years (or much, much sooner) the 16% dissolves into a 100% cure rate?

Saving My Grace...and Jacob has been quiet for a while. I had a burst of expression fueled by gratitude over Thanksgiving and then the busy December madness swept me up with the current (in a good way). I've had several stories stirring in my heart waiting for the motivation to sit down and write. Megan's story couldn't wait.

And neither can her bone marrow transplant.

More about Megan's story, as well as a link to donate to her bone marrow transplant can be found here. It is truly a beautiful story and well worth the time.

Dear Cancer,

We didn't ask for you.

You came into our lives and you infested our baby's body and you nearly took her precious life. You tried to take our marriage, our money, our home. And you did it without regret or mercy or dignity.

You claimed her childhood. Her entire remembered life has been about you, and she has been exhaustively fighting against your pathetic existence.

You claimed her brother's childhood. Born into crisis, always overshadowed by your commands, silenced by your shattering screams.

Her father and I rage against you, powerless to your random embrace, fearing that you will one day return with a vengeance.

You have no right.

We didn't ask for you.

We never wanted you.

And yet...

In your cursed grip we found hope.

We never knew the Strength we had until you. And we never knew the Will we had until you. And we never knew the Blessings we had until you.

You taught us to hold our children tighter. To marvel in their precious details. To be present. To engage.

Your intrusion pushed us towards greater truths and growth and gratitude.

And in your midst, we learned to receive. We learned to accept. We learned to welcome.

And our children will rise above you. They will turn away from your ugliness and instead turn towards empathy and compassion and progress. Their lives are richer because of you.

Pain and suffering and misery came to us through you.

But love and abundance and humility blessed us through you.

And today I give thanks for the blessings.

With my deepest sincerity,

Heather

This week is about being grateful. Today is another story of hope and light and abundance given to us during our daughter's 27-month chemotherapy for childhood leukemia. Diagnosed at three years old, she is now a healthy, spirited and beautiful six-year-old who continues to be in remission.




About six months into Gracie's treatment, we were contacted by Make A Wish (www.wish.org). We had heard that this was coming, but we didn't know when or exactly how things worked. We were beyond excited as we read our instructions and explained the idea to Grace. She immediately knew what she wanted to do. Hard to believe for a three-year-old, but she wanted desperately to go see the Statue of Liberty.

For quite a time, Gracie had been curious about statues, particularly marveling at pictures of Lady Liberty. We had always known that at some point we would take her to see it, but never could have imagined the path that would lead us there.

The Wish granters who interviewed Gracie were absolutely thrilled to be sending this tiny little bright-eyed girl to see such a special symbol of freedom and opportunity. They called us within a few weeks to let us know that Gracie would indeed receive her Wish and the whole family was going to New York City.

The day before we were leaving, Engle Homes in Denver had organized a fun run charity event called Miles for Smiles to raise the money for Gracie's and another child's wish. They not only raised the funds for these two children, but also for three additional wishes. Incredible.



Something to know about Make A Wish: They don't just grant a child's wish, they take the wish and turn it into the most beautiful dream of a lifetime.

A stretch limousine took us to the Denver airport to begin our six day, five night extravaganza in the Big Apple. We stayed at the Grand Hyatt in Grand Central Station, right in the heart of it all. We hung out in Times Square, Central Park, the Natural History Museum, The Empire State Building, The Bronx Zoo, FAO Schwartz, The M&M Store, Toys R Us, and of course, Liberty Island. We paid not one penny of our own money for anything, we never waited in line, and we were treated like royalty.

And our high-energy life-loving struggling-for-her-survival four-year-old was simply joyous.

And so were we.

When the ferry pulled up to Liberty Island, David and I shared tears of silent understanding. For so long she had wanted to come here. And we knew that in her four-year-old brain there was little comprehension of the true magnificence that she was about to see. This was no soldier on a horse in the park. This was huge, glorious, breathtaking. And we both felt an unspoken confusion. Torn between the brilliance of this fulfillment and the treachery of the journey that brought us here.

But all of our inner challenges melted away in one true moment of peace as we inhaled the tranquil amazement on Gracie's face.


And the moment belonged to little Jacob too.


We spent a large part of our day there, and on the long walk back to our hotel (we chose to walk so we could really take the city in), we walked through Ground Zero. Seeing this gaping hole in the ground... imagining how completely horrifying... the terror... the trauma... and yet, only six short years later, really a glimpse in time compared to the tragedies of 9/11, people were walking all around us with briefcases and cell phones and going about their lives... And we truly recognized the bravery and the compassion and the triumph owned by them. To live your life in full motion after something like that...



And we felt grateful to be alive and to be looking down at our two sleepy children in the stroller who had just had the best day of their lives.

And we returned from our trip with brightness and connection and a greater resolve to conquer this cancer thing. Together we would Save Our Grace... and each other.

Endless thanks to the people of Make A Wish and Engle Homes for giving our daughter and her family the most precious of memories and for bringing hope and peace and light into our darkest of times.

Gracie in Central Park. We stopped to take a few quick photos in between the Natural History Museum and The Empire State Building. One of those photos that just happened.

When my mom (Kathy),"Grandma," heard of Gracie's diagnosis, she was 2000 miles away in Ohio. I remember so clearly that I was standing in the empty hospital room as Gracie was having a bone marrow biopsy to confirm the suspected presence of leukemia. I was using a cell phone that she had just given to us "for emergencies." She had been worried about us making such a huge move from Tucson on lonely highways through New Mexico with her two grandbabies and no cell phone. Who knew we'd be using this phone to make this call.

I could barely speak the words, because to speak them to anyone outside of the hospital suddenly made the nightmare a wide-awake reality.

"So, you know how Gracie's been having a fever for several days now?"

"Yaaaah....?"

"Well, we had to bring her to the hospital last night..."

"Uh huh..."

"We took her to a doctor yesterday who called us back to tell us that she has no blood left---its called pancytopenia."

"OK...what causes that...?"

"So she's in surgery right now and they're checking to confirm that she has..."

Long silence.

No, I can't speak it because it is not true. It cannot be true.

"Its OK honey, just tell me."

"They think she has leukemia.............................blood cancer."









"No...no...no...Oh God, no..."








I could actually really cry to her because Gracie was elsewhere. I couldn't really cry up until now, because Gracie was scared enough. But now, with my mom on the other end of the line and Gracie out of the room and David walking Jacob out and about, I hunched over to the floor and sobbed so hard that I could likely be heard all the way to the nurses station. And mom matched me. And in between sobs of grief and disbelief she kept saying "Oh honey I am so sorry..."

The next few days we used that cell phone a lot.

Can you imagine being thousands of miles away from your child when they call to tell you that your grandchild has just been diagnosed with cancer? What do you do with that? Not only are you grieving for your grandchild, but you are grieving for your child, and you are completely helpless to do anything about it. So yah, that cell phone became a lifeline.

Once we were able to return home, I talked to my mom at least once a day, both of us comforting each other as best we could. Every time I spoke to her, I could tell how much she wished she could do something, and how much she wished she could just be here for us.

One day, within a couple of weeks of returning home, she called me to tell me with no uncertainty, that if we didn't object, she was going to move here. "I just need to be there," she explained as I cried with joy, knowing that my mom was going to support us through this grueling process. "It might be awhile before I can get there, I'll have to wait until my house sells, but I'm going to get there. I can't be this far away from you guys." And with tears in her voice she said, "I want to know my grandchildren."

My mom works for Progressive Insurance as a computer programmer. There are three programming centers in the country. One in Florida, one in Cleveland, Ohio where she lived, and yes, the third is right here in Colorado Springs.

She couldn't have come to help us if we had chosen to stay in Tucson or move anywhere else besides Tampa or Cleveland.

But here we were. And here was Progressive's tech office. And they granted her a transfer with no issues whatsoever.

She put her house on the market and it sold within a month and she was here by Christmas that year. Here through the absolute worst part of Gracie's treatment. Here to share the holidays with us. Here to hug me when I felt like I couldn't do this anymore. And here to help us give Jacob a safe place to land while David was working and I was with Gracie at the clinic.









And it has been absolutely wonderful watching the relationships between her and my kids blossom and grow, and she really does know her grandchildren.

When I was pregnant with Grace, my mom was scheduled to come and stay with us. My due date was April 19, and mom was due to fly in on April 29. When we picked her up at the airport, I was bigger than a house, still miserably pregnant, hitting sliding glass doors with my belly before my feet could trigger the opening device. I went into labor the next morning and Gracie was born on April 30. Mom got to be there for the whole thing, from the first labor pains to the actual birth itself. We always joke that Gracie was just waiting for Grandma to get there.



I don't thank her enough, but today I feel tremendous gratitude to my mom for sacrificing everything she knew back in Ohio to be here for us.

Thank you so very much mom for helping us Save Our Grace and Jacob. I love you with my whole heart.

Childhood Hematology Oncology Associates.

Can you imagine working in a childhood cancer clinic?

Really, take a moment to think about it...

What must it take to put your best game face on every day, knowing that you will be working with life's most innocent patients who suffer so very much? How can you smile when a child is crying in fear or too sick to walk or screaming at you for causing their pain. How can you go home every day without carrying the burden of a horrified parent coming to you for answers you don't have? And how do you show up to care for the next patient after attending another tiny, undeserving patients' funeral yesterday---one whom you had truly grown to love and adore over the years...

I can't imagine how, but somehow these very special people make it through.

Every day.

Day after day.

Moving to Colorado was in our five year plan. We had a condo in Tucson, and we really wanted to have enough equity in our place to make the move without losing too much money. But in February, 2006, for some reason (and really, looking back I can't remember exactly what that specific reason was), we decided that after a year of property ownership, it was time to take a risk and move again. We became anxious, restless, impatient. Waiting four more years was not going to satisfy us, so David began applying for jobs in Colorado.

When David had his first interview in Colorado Springs, we hauled the family hundreds of miles to see if the Pikes Peak area was right for us. We fell completely in love, especially with Woodland Park, and hoped with all of our might that he would be hired so we'd have an excuse to live here. He was hired for the following school year and we drove back a month later to find a home.

We couldn't believe that we were actually searching for a home in the mountains, and the home that we found was absolutely perfect for us. We moved here that summer (2006) and were thrilled to see green leaves and breathe fresh mountain air that was less than 100 degrees. Life was really falling into place.

Those of you who know us know the story... two weeks after our much anticipated move to Colorado our three-year-old Gracie got a fever that wouldn't go away and eventually led to a diagnosis of Acute Lymphocytic Leukemia. We knew not a single person. Strangers in a strange land with a sudden, shocking, debilitating strange disease.

On our last day at the hospital, we were told that Gracie would be receiving her treatments at a place called CHOA. "They are wonderful over there," explained the nurse as she helped us gather our things to return to our strange new place.

And wonderful they were.


Understanding our situation, the doctors and nurses in this clinic did everything they could to make us feel at home every time we came in for a treatment (which was several times a week at first). They took extra time to talk to us, they helped us get to know the lay of the land, and they even helped care for our other baby, whom we had no babysitter for yet. They didn't just treat our daughter, they nurtured our whole family. And they continued to be our advocates and our caregivers and our support system through every single step of Gracie's treatment process (and even still today).

Dr. Cook, Dr. Palmer, Tammy, Jean, Joan, Amy, Kristen, Sherry, Tracy.

They don't just do their jobs, they bend over backwards to save these precious lives that cross their paths. They aren't burdened by late night phone calls and they'll leave a special dinner date to treat one of their patients rather than sending them to the hospital to be treated by a stranger. They get to know their patients and their patients' families, and they do their best to offer whatever comfort they can muster. And they really do all of this with a smile on their faces and a warmth in their hearts and you'd really never know that they attended a child's funeral over the weekend.

David and I often analyze the circumstances leading to our move here. It was pretty crazy that we simultaneously decided to scrap our five year plan and take such a risk. And it was really amazing that David was hired in Colorado Springs so very quickly. And finding this house was much easier than we might have expected. And even with all of that in our favor, if Gracie had shown any signs of illness even one month earlier than she did, we couldn't have possibly landed here.

But here we are. And here is CHOA.

Childhood cancer clinics are pretty rare, and some people have to drive hours to treat their child. Some people have to fly to treat their child (really, we know stories about people spending thousands and thousands of dollars on airline tickets). And for those who can't get anywhere near a childhood cancer clinic, they must be treated in a hospital, where wait times are unbelievably long, risk of infection is high, and employee turnover is through the roof.

We had the honor and privilege of being served by a caring and consistent staff in a small place where infection risks are minimal and we never waited more than a few minutes to be seen.

So today my heart swells with gratitude for CHOA's guardian angels and for the Shove that propelled us into their Saving Grace.

Cancer is brutal. No question about it. It threatens to steal your marriage, your home, your livelihood, your life, or worse, the lives of your children. And when you are completely in it---like in the midst of chemo, or at the initial diagnosis, or during a horribly painful procedure, the light of hope feels dim at best.

"Do you ever try to control other people? (Hint: Yes!)" (Steve Ross, Happy Yoga)

Guilty as charged. How about you?

As Steve Ross (yoga guy, host of Oxygen Network's Inhale) illustrates, we all find ourselves being controlling sometimes. Whether we are interacting with our spouse, our children, other drivers on the road or the girl making our lunch sub behind the counter, we have all, on at least one occasion, tried to control the actions of others.

Having said that, it is with complete love and humility that I point a little finger at my six-year-old control freak. Anybody who knows this child knows that she likes to be right, she likes to be first, and she likes to be best. And she doesn't try to hide it.

A couple of weeks ago, David and I went to her first parent-teacher conference of the school year. After 2 1/2 years of grueling chemo and social isolation, we knew that Grace might have some disadvantages when it came to peer interactions, but we still cringed to hear that our little girl is having some troubles getting along with others. Nothing horrible, but it turns out that her compulsive urges to be right, to be first, and to be best are starting to bother some of her classmates.

If I'm being completely honest, I more than cringed inside. I worried that she would be socially outcast and that she would begin to lose her confidence and that she was hurting her friends' feelings and that I hadn't done enough as a parent to prepare her for school and...hasn't she been through enough already?! Now you're telling me that the other kids don't like her???!!!

But, after some serious reflecting, I've come to my senses.

I do feel badly for the other children if she is stepping on their toes, and I am working intently with her on the tattling and the constant correcting of others and the value of letting somebody else give the right answer sometimes.

But really, I THANK GOD EVERY DAY THAT SHE WAS BORN TO CHALLENGE AND INSIST AND FIGHT AND WIN. Because she needed it more than most of us can ever understand.

And for a child who so desperately wants to be in control, I can only imagine the true hell that was her reality for most of her remembered life.

Steroids controlled her emotions.
Chemo controlled her body.
Doctors controlled her pain.
Mom controlled her meds.
Cancer controlled her life.

BUT...

On a beautiful spring day when Grace had just turned four, we went to the clinic for a routine blood check and maintenance visit. For her birthday, we had painted her toenails and bought her some fancy new sandals. She was getting her blood drawn and the nurses were gathering around to say hello and marvel at Gracie's shiny new pedicure. As Dr. Cook (a kind, yet authoritative man carrying military honors and over 25 years of experience in childhood oncology) approached the scene, the chatter simmered down a bit and we all humbly awaited his greeting. "Miss Grace," he beamed, "those are the prettiest pink toenails I have ever seen!" All of us smiled and I looked to Gracie in anticpation of her "Thank You" that was sure to follow.

But "Thank You" was not on her mind.

With utter confidence and agility, this little four-year-old half-bald precocious (and wonderful) little spitfire looks up at this brilliant, skilled, accomplished doctor and says...

"Oh, they're not pink, they're magenta."

Two seconds of silence preceded a gigantic, unanimous outburst of uninhibited laughter.

The thing is, had she said that to any other authoritative figure in front of any other group of employees, she may have gotten a completely different response. But this group, these special people, they are thrilled to see a child who will not be humbled by authority. Who will take charge whenever she can.

A Fighter.

A Survivor.

And two years later, they still tell that story and laugh about it like it was yesterday. And I can only imagine that those special people can use a good laugh.

So, whenever Gracie gets to be so controlling that I feel like giving myself a time out, I must remind myself that her drive to be right, her drive to be first, and her drive to win have given her the strength to conquer a greater battle than most folks will ever face.

And I will continue to help her channel her strengths so that instead of intimidating others with her assertiveness, she may encourage others to be bold and to challenge with dignity and to fight for the very best that life has to offer.