Saving My Grace...and Jacob

84/16

2009-12-17T12:48:00.006-07:00

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

2009-11-26T01:22:00.005-07:00

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

Make A Wish

2009-11-25T23:10:00.009-07:00

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.

(Little Gracie is kneeling down in front holding a prized Spiderman ball)

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.

Grandma

2009-11-25T15:37:00.007-07:00

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.

CHOA

2009-11-24T21:25:00.006-07:00

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.

Gratitude

2009-11-21T07:54:00.009-07:00

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.

And yet, this Thanksgiving, as I reflect on our experiences with childhood leukemia, I am compelled to shift my heart to gratitude (thanks to the very special ladies whom I am blessed to spend Wednesday afternoons with). Because there really was hope sometimes, and there really was joy sometimes and there really was mercy sometimes.

So, this week, I will post several stories that focus on the beauty and the compassion and the generosity that Saved our Grace.

I hope you enjoy them, and for those of you in the midst of the cancer storm, it is with great humility that I offer you a little light.

One Small Sparrow

As if having a sick child isn't enough, the medical bills are truly crippling. Seriously. Gracie's diagnosis visit alone was well over $18,000 and that was the very tip of the iceberg, before the ghastly pricey chemo even started. We estimated the total cost of treatment to be somewhere between $250,000 to $500,000---and that is a pretty conservative estimate.

Know anyone who can pay that? Especially couples with small children? Yah. Neither do we.

Luckily for us, Grace qualified for medicaid through Supplemental Security Income, but only because her condition was severe enough to be determined as a long-term life-threatening illness. But getting her on this program was lengthy and stressful and really truly awful, during a time of crisis anyway, when the last thing we needed to do was verify that we were indeed poor enough to not be able to afford a Cadillac arsenal of drug therapy that was absolutely imperative to save our baby's life. The process took almost a year, and we accumulated tens and tens of thousands of dollars in medical debt waiting for the Social Security Administration to finally say "OK, we'll pay for it, but only if David never makes any more money than he's making right now."

Ahem, excuse me while I hop up onto my soapbox: Please picture me with a huge megaphone shouting "HEALTH CARE IN THIS COUNTRY MUST CHANGE!" OK. Sorry, but its true.

Of course, we are quite unfortunately not the only family to have experienced this type of financial turmoil, and I will tell you a brief synopsis of how one child turned this financial turmoil into a story of powerful compassion and beauty.

About 15 years ago, a baby named Michael was born into the Leeland family. At six months old, Michael was diagnosed with leukemia and needed a bone marrow transplant to save his life. Michael's father Jeff was a teacher in Oregon who had just changed jobs, so his insurance was unwilling to pay for Michael's transplant until Jeff's 90-day waiting period was up.

Michael didn't have 90 days.

The hospital would not perform the procedure until the Leelands posted $200,000 towards the bill. Really.

Upon hearing of the Leelands' crisis, one special student, Dameon, a 300 lb. 8th grader and the most teased kid in school emptied his bank account and brought in 12 five dollar bills to save his teacher's son's life. As other students learned of this powerful generosity, they rallied to raise the money. The day before Michael's transplant, the bank account that Jeff had started with Dameon's money had $227,000 in it and Michael got his transplant and lived. He is now a healthy, active teenager on the football team and Dameon became a legend in his school. Michael lived and the entire culture of the school changed from one of teasing and bullying to service and compassion. Jeff Leeland has written this entire story in his book called One Small Sparrow, and I would highly recommend that anyone read it.

Once Michael was in complete recovery, Jeff decided to give thousands of children across the country chances to be heroes, just like Dameon. He has since started a non-profit organization called Sparrow Clubs, in which schools and youth groups adopt medically needy children locally and raise money to help the family through their crisis. The money comes from a corporate sponsor who pays the family's bills based on the number of community service hours performed by the students. "Sick kids get help. Healthy kids become heroes. Schools become sanctuaries." Read all about this amazing program here: www.sparrowclubs.org

So...

During the very most difficult phase of Gracie's treatment, before the insurance drama was settled, our family was asked if she would be a Sparrow. And of course, we said yes. The students of Vera Scott Elementary in Colorado Springs adopted our Gracie to be their Sparrow, and they worked their little hearts inside-out to help with her medical treatment.

When Gracie was first introduced to these children, the Sparrow Club organization created and showed a movie based on Gracie's story. There wasn't a dry eye in the auditorium as little 6 and 7 year-olds sobbed with a deep desire to change our little girl's life.

More than money:

The best part about the entire experience was this: At the end of the service project, the organization sends you a count of all the hours of service performed as well as the vouchers that the children had to turn in for credit. On the back of the vouchers, the children have the opportunity to express "What helping Gracie has meant to me..." David and I spent hours reading through hundreds of these vouchers with quotes like:

"It meant I was not only helping neighbors but I was helping someone that needed help. It was hard work but I was happy I did it. I like helping Gracie."

"I want to do more Sparrow hours for her. I hope she gets better so she can climb Pikes Peak."

"Helping Gracie has meant to me is that I want to go and clean up the world. It has also made me happy that I am helping Gracie. I wish I could do more to help Gracie."

"What helping Gracie has meant to me is that you can help your community no matter how big or small you are. I felt that only the tiniest bit of community service can make a huge difference."

"I feel good that I could help her and be a part of her. It has been so great to help Gracie and I finily get to help someone who needs my help. I love it!"

"Helping Gracie made me feel happy. I am happy helping Gracie so I can save her so that she can be like a normal kid."

More precious than the purest gold.

It is difficult to express in words just how thankful we are for this experience and these children. They took a tragic situation and turned it into an awe-inspiring milestone.

And the greatest gift of all...

The woman who instigated the Sparrow Club for Gracie was another cancer mom from Gracie's clinic. Having been so inspired by the tremendous love and encouragement and abundance given to their family during their son's leukemia treatment, she felt deeply driven to pay it forward. Her son has been cancer free for three years now and is doing wonderfully.

This year, David and I plan to adopt a Sparrow with David's 8th grade Edge team (30 students in an alternative program whom he teaches Science and History). My heart swells with tremendous gratitude that not only was our baby a Sparrow who instilled a culture of service and generosity, but we as a family will get to spread the cheer. What a beautiful gift to us.

And Dameon's legacy goes on...

Our Little sparrow and baby bro:

These photographs were taken while Gracie was being adopted as a Sparrow. Eternal thanks to photographer Charlotte Geary for donating her precious time and amazing talent. Please check out her beautiful portrait work here: http://www.charlottegeary.com/

Magenta

2009-11-09T17:01:00.000-07:00

"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.

The Halloween Pack

2009-11-03T17:11:00.008-07:00

I never really thought I'd be a mom who would make costumes and dress up with my kids. I was plenty happy with those adorable costumes that Target and Wal-Mart sell nowadays---you know, those cuddly little bumble bees and lady bugs...sweet, warm, cheap, and about as easy as you can get. But then...

On our first Halloween back in Colorado (3 months after Gracie's diagnosis) Gracie decided she wanted to be an elephant. We had spent many hours at the cancer clinic watching Dumbo and it quickly became her favorite movie. Personally, that particular movie always made me feel pretty sad (those earlier Disney films could get really intense---i.e. Bambi) and I really would have preferred to watch something a little more upbeat (especially then), but Gracie loved it and wanted to watch it whenever she could. Looking back, I wonder if she was feeling a deeper connection to that sweet little baby elephant. Scared, confused, and definitely different from the rest of the clan. Whatever her reasons, she was absolutely driven to be an elephant that year.

And, of course, elephant costumes weren't dominating the racks at the superstores so I had to get resourceful.

Enter the internet. Thanks to the Family Fun website, I found a great costume idea that required little more than some poster board, fabric glue, and gray sweats from the thrift store. Gracie's costume was so easy and cute that I made one for Jake, and soon after, David and I decided that it would be really fun to go as a whole herd.

Of course, we couldn't just be any old elephants, so we wore name tags depicting Grace as Dumbo, David as Babar, me as Dr. Seuss' Horton, and Jacob as Stampy, the elephant that Bart Simpson won from a radio contest.

The Kriegshauser Herd, 2006

It wasn't just fun, it was a blast.

And it felt right.

And so, we made a tradition of finding a family theme every year...

The Incredibles, 2007---by far my favorite

The Simpsons, 2008
(Thanks to Grandma and neighbor baby Jade for their cameos as Krusty the Clown and Maggie)

The Wizard of Oz, 2009

Yes, making the costumes is a chore, and yes, even the "easy" elephants were time consuming and every October 29th and 30th I wonder if this is really going to come together and if this is really worth the hot glue on the carpet... BUT...surely there will come a day when our children will be way too cool to dress up with Mom and Dad, and David and I will be watching them go out and about with their friends... (and they'll probably be dressing up as weird people that we've never heard of...)

If there was one thing that cancer taught us, it was who our pack is. Leukemia certainly taxed our marriage, our finances, our health, and our spirits...and yet, it bonded us together so deeply.

So for now, I am truly grateful for Halloweens and cold nights of trick-or-treating and costume debris all over the house. And for always, I am grateful for the photos and the memories and the part that I get to play in my precious family.

A Little Too Much Morphine

2009-10-19T20:55:00.013-06:00

About three months before moving here from Tucson (about four months before her leukemia diagnosis), I noticed this crazy rash on Gracie's legs while she was in the bathtub. She seemed to be fine and wasn't complaining of itching or pain, but I had never seen a rash like that before so I called her doctor to schedule an appointment. Dr. Moher called back, asked some questions about how she was doing or what she might have been into, and instructed me to give Benadryl and "call (him) in the morning" if the rash persisted. "It might make her pretty drowsy," he said, and I was certainly not opposed to slowing down my little Energizer Bunny for an evening. So I gave her the Benadryl and within an hour the rash was gone---no worries. Except that the seemingly benign little antihistamine didn't make her drowsy.

Quite the opposite.

This stuff made her crazy---hyper like I've never seen. From one dose Gracie was bouncing off the walls and couldn't sleep that night. So much for slowing her down a bit.

Apparently, Gracie had an "idiosyncratic reaction" to Benadryl.

"Huh?" you might say (at least that's what I said), so here's what it means:

Idiosyncratic drug reactions, also known as type B reactions, are drug reactions which occur rarely and unpredictably amongst the population. (http://en.wikipedia.org/wiki/Idiosyncratic_drug_reaction)

Little did I know how handy this tidbit of information would be.

Flash forward nine months or so. Gracie had a particularly long day at the clinic, with a spinal tap and an eight-hour IV chemo injection (so toxic is this particular drug that it has to be given very slowly). During her spinal tap, she started to become too alert for the Dr.'s comfort (and for mine) so they gave her an extra dose of morphine. Normally, she would be given one dose of morphine plus one dose of fentanyl and if she needed more sedation she would get extra fentanyl. But for some reason, on this day she was given extra morphine instead.

This never happened again.

Sometimes morphine can cause a reaction that feels like something is crawling under your skin. Pins and needles. Alien worms.

Of course, Gracie had this reaction in full force.

For one full hour, she was screaming and crying and screaming and crying. She cried for me to hold her and screamed for me to quit touching her every time I tried. Nothing consoled her. Nothing.

So many times in the previous few months I had been on the other side of the door, listening to someone else's child screaming, trying to assure my child that everything was OK. That the other child wasn't being tortured, that nothing this horrifying was going to happen to her, that the other child's mommy was doing everything she could...

This time, it was my turn to be on the wrong side of the door, and I felt completely helpless. I wanted to hold her, caress her, but my touches were like electric poison to her then. I tried to forget the certain fear and sadness racing through the moms and kids on the other side.

And really truly honestly, I had to talk myself out of scooping her up and running far, far away from this place. Maybe we'd escape to a place and time in which this wasn't happening. In which none of this had ever happened.

The nursing staff was attentive, but I guess they were used to this sort of thing and thus chose to wait it out a bit before giving her more drugs.

And after about an hour, her Dr. came into the room offering up his solution to this utter madness...

Benadryl.

And then he approached her IV line with the syringe in hand explaining to me that "this should calm things down for her."

Have you ever had one of those dreams in which you're trying to run from something but your body is in virtual quicksand? Your heart feels like its going to explode right out of your chest but you can barely breathe, your voice has been stolen from you and you can only watch as your doom approaches...

Yah. That's how I felt in that moment.

And just as the needle was reaching the port...

"Wait! Benadryl makes her hyper!"

It was like emerging from the pool. Like waking up and actually being able to run from the monster in your dream.

And the needle retreated immediately.

"Well, we'd better not give her that..." smiled the Dr. calmly. And he went to get her something else that would calm her down.

And as I watched her sleeping for the next couple of hours, I reveled in my small victory.

I couldn't save her from the pain of spinal taps. I couldn't ease her nausea from chemo. And I couldn't take away her cancer.

But today I helped her get some rest.

I helped her.

And I held her the whole time.

I still don't know what caused that rash in Tucson, but I think about it...a lot.

What would her recovery have looked like that day at the cancer clinic if the Dr. had given her Benadryl? How much more devastating would her reaction have been?

Hard to know but I shudder to think...

And I feel so grateful for the Gift of that rash.

Protection

2009-10-12T16:39:00.018-06:00

For as difficult as the pregnancy is, any mom knows that it is the easy part. Yes, the morning sickness, the fatigue, the weight gain, the fatigue, the swollen ankles, the fatigue, the restless legs, and the gargantuan tummy protruding from a body that doesn't feel like yours anymore are certainly menacing, and maybe even downright defeating for 9 months. (And did I mention the fatigue?) But being pregnant allows you to give your precious, tiny baby more of something than you'll ever be able to give them again---protection.

Inside your belly, nature provides everything that your baby needs. They are in the perfect cocoon of warmth, nourishment, and peace. They never have to cry, they never have to be alone, and they never have to be afraid. They are protected, and all you have to do is eat reasonably well and try to steer away from too much stress.

Once they are born though, providing for our babies becomes infinitely more difficult and ambiguous. Everybody and their second cousin has a (very strong) opinion about what all babies need and how they should be raised and it is up to each parent to ultimately guess how to meet the particular needs of each child. Breastfeeding or bottle or both? Scheduled feedings or free feedings? Cloth diapers or disposable? Pacifier or not? Cry-it-out or co-sleeping? Stay-at-home or return to work? These choices matter. And these choices aren't always easy, and they aren't always the ones you thought you'd make and sometimes you change your course because the choice you made initially isn't working out. But we debate over these choices and put weight into these choices and sometimes (admittedly) obsess over these choices because we ultimately want to provide everything that our babies need in such a way that they won't grow up with dysfunctions or pain or fear. We want to protect them.

When Gracie was born, I was surprised by the overwhelming drive to protect her. (I was also surprised that pregnancy was the easy part, but I suppose that's typical with your first.) David and I, like most other parents, wanted to do everything right. We were going to give her the best of everything---the best parenting---the best chances in life. We researched our decisions, we talked to other parents, and we used our parental instincts. And we certainly, like most other parents, did the best we could. We did everything within our powers to protect her.

How powerless were we...

In the aftermath of learning that our baby had cancer, it was impossible to not blame ourselves. What did we do? What didn't we do? What could we have done? What should we have done? How could we miss this? We weren't smokers. We didn't expose her to toxins. We used sunscreen. We were careful with her nutrition. We kept her current with vaccines and doctor's visits. We tried so hard to make everything just right for her. We tried so hard to protect her.

Why couldn't we protect her?

Nobody knows what causes a child to get cancer. It is extremely rare and it seems like there is no single cause or group of causes that explains it. Lots of time and money and research haven't provided any real answers. More and more questions are being answered as to the causes of adult cancers, but with children, we just can't make sense of it.

And yet, David and I still sometimes think about her first three years of life and wonder where we went wrong. Rationally, we know it wasn't our fault. We've been told that there was nothing that we could have done or should have done or did or didn't. And we know in our heads that this is true. But in our hearts, we still sometimes search for a reason, an answer, an explanation.

Maybe we still think that if we have a definitive cause we can protect her this time. Because if we don't know what caused it, then we have no way of preventing it from happening again. And we have no way of protecting our other baby.

And where does that leave us as parents?

When Jacob was born, we felt much more confident in our abilities to protect our children. We had been there, done that, and (so far) things had turned out OK. Our drive to protect him and give him the best was every bit as strong as it had been for Gracie, but our worries about doing so were minimal.

We pretty much adopted the same parenting style for Jacob as we had for Grace. There were fewer decisions to make, fewer questions to be answered, and fewer adjustments to make. Of course, a second child warrants huge adjustments within the family, but we knew how and when to make them this time.

And for the next seven months, until Gracie's diagnosis, we had ourselves believing that we were really good at and in control of protecting our babies.

As parents, there are things we can control and things we can't. We can control where we leave the scissors. We can be certain to never leave an infant unattended in the bathtub. We can carefully choose our words and our tone of voice. We can control our own behaviors and reactions. But we cannot control viruses. We cannot control electrical storms. We cannot control another driver's choices. And we cannot control certain diseases like cancer.

And where does this leave us as parents?

We are left to grapple with uncertainty.

Whether we believe in karma, or God, or the butterfly effect, or random chaos, we are all left to deal with forces beyond our control. At some point, we must choose to either turn things over to something greater than ourselves, or go insane trying to control every, every aspect of our lives. And every, every aspect of our babies' lives.

There is True peace in turning things over---to any higher power---even random chaos. Because sometimes our vigilance and our research and our deepest longings to make things right just won't be enough to protect us.

We need to do our best to make sure that the scissors are out of reach, and that we watch our babies in the bathtub and that we speak calmly and that we don't lash out in anger. But we have no idea if the next flu virus will hit before there is a vaccine, or if the drunk driver in the next lane will crash into us, or if cancer is hiding out in our body waiting to pounce---and the greatest tragedy would be to live our lives in fear of these things or to blame ourselves when they happen.

And when I can remember that the protection of my children is not always within my grasp, I can let go and find comfort.

This picture is of Gracie just two months before she was diagnosed with leukemia. She had just had her three-year-old check up, and passed with flying colors.

Spinal Taps and Whoopee Cushions

2009-10-07T20:32:00.009-06:00

Ouch.

A Lumbar Puncture, or affectionately known as a Spinal Tap, is a procedure in which cerebrospinal fluid is removed from the spine. It has various purposes, but for cancer patients, it is done to check for cancer cells in the nervous system and to inject chemotherapy directly into the spine to prevent the cancer from spreading there. Apparently those rotten little opportunistic cells like to hide in the spinal cord until it is too late. Cancer in the nervous system is pretty bad, and apparently the "cure" rate for childhood leukemia has greatly increased since medical teams have adopted this treatment as standard prevention. ("Cure" is in quotes because there really is no cure for cancer, but if relapse has not occurred within 5 years of treatment, then your chances are pretty good that it won't come back---then they say you are "cured".)

Even looking at this medical drawing, I can't believe how "used to" these things Gracie and I became. She had dozens of these---once a week for the first couple of months, then once a month for awhile, then once every three months. We had our ritual: Highlights Hidden Pictures during the prep, Raffi music during the procedure, and books during recovery. I knew which sedatives she should have and in what dosages and I knew which ones she should not have and in what dosages (trial and error showed us all that Gracie had some pretty serious reactions to some of those drugs---again, another story for another time.)

Gracie was always sedated, but not asleep. During the actual procedure, she'd sometimes look for Hidden Pictures, sometimes sing with me, and sometimes cry from the pain. She always felt it, but her reactions were always different, and she'd "wake up" not remembering a thing. I'd just hold her in position, whisper words of encouragement in her ear ("You're almost done, sweetie," "You are so brave," "Help me find the hidden shoe..."), and do everything humanly possible to not cry myself.

The up side to these things for Gracie was that she always got to choose a prize on the way out of the clinic. They've got a closet full of toys and games reserved for those kids who have had an especially intense visit---such as a spinal tap or a bone marrow aspirate. Oh how she looked forward to the prize box. Piles of puzzles, dolls, books, even movies...truly a haven for an ailing child.

Sometime around her 2nd month of treatment, while recovering from one of her spinal taps, the nurses came into her room almost bursting with excitement. They couldn't wait to tell Gracie that instead of choosing from the prize box this week, she was going to be getting something even better. Rolling behind them was a suitcase shaped like a turtle and stuffed full of some of the coolest prizes a kid could ask for. Her eyes lit up brighter than I had seen them in a long time.

Inside this turtle we found a hat, a silly wig, puzzle books, a portable DVD player, DVDs, a craft kit, a 20 questions ball, and a whoopee cushion. And what was Gracie most excited about? You guessed it---the whoopee cushion. She could barely contain herself when she said "I can't wait 'til Daddy gets home so we can trick him with this!!!!"

And "trick" him she did.

After we finally made it home, I popped a frozen lasagna in the oven (we sure ate plenty of those during that time) while Gracie carefully placed the inflated whoopee cushion on Daddy's seat.

Six o' clock came around.
The table was set.
We heard Daddy's footsteps at the door.
Somehow baby Jacob knew that it was critical to keep a poker face.

The door opened and Gracie almost lost it, but she quickly pulled it together.

"Hello, family," he said (he really does greet us that way), "how did everything go today?"

"Um, OK," I replied, trying to honor my daughter's wishes to "don't say anything!"

Poor David, because given the circumstances, he likely had pangs of worry in his stomach from our attempts to be morose. But as he approached the dinner table and saw the intended prank, he quickly figured out our sinister plan. God love him for having a better poker face than ours.

He not only sat on that whoopee cushion, he "exhaustively" threw himself on the thing and it let out the loudest fart I have ever heard in my life.

Why on earth is that sound so flippin' funny?

We were howling with laughter. Snorting, side splitting, gut wrenching, can't breathe, tears flowing, laughter. Even 9-month-old Jake woke up and "got it." I would seriously like to see some research as to what the universal humor is behind this phenomenon, but scientific explanation or not, we were absolutely, completely, cracking up.

For the first time in 2 months. And following one of the (many) worst experiences that I or Gracie will ever have in our lives.

Of course, one wasn't enough, and David indulged us with his "ignorance" every time he got up to get a napkin, or get more milk...and we laughed for a very long time that night.

Then we played with the 20 questions ball and were astonished by how smart that thing is. Gracie just couldn't get over how easily it guessed "cat." (Jakie couldn't get over how well it soothed his aching gums.)

And for a time, we forgot about cancer and catheters and drugs and spinal taps and we were a "normal" family playing games and laughing at farts. And it was the best medicine.

Thank you SO VERY MUCH to the Gabby Krause Foundation for providing the "bags of fun."

"Gabby Krause was an amazing six-year old who died in September 2004 after a courageous 19-month battle with brain cancer. The mission of the Gabby Krause Foundation is to make a difference in the lives of children and their families who are faced with fighting cancer and other long-term childhood diseases. The Foundation’s goal is to continue her legacy of smiles, zest for life, and the 'Grip It & Ripp It' attitude that she exemplified while facing life’s toughest challenge. A child’s inspiration – Carrying on a legacy of smiles."

http://www.bagsoffun.org/

Gabby, your legacy of smiles has Truly rained joy in our lives.

I Sat On Her

2009-10-05T11:35:00.013-06:00

Most people who must undergo chemotherapy opt to outfit themselves with an iv port or catheter. There are so many drugs and blood tests involved in cancer treatment that it is easier for both the patient and the nurses if a permanent, direct line to the veins is available.

I'll never forget the morning of Gracie's diagnosis when we were forced to make a quick decision about what kind of line she should have. She was going into surgery to have a bone marrow biopsy to determine that she indeed had leukemia. Because her doctor was so certain of his preliminary diagnosis, he believed that we should go ahead and insert her line at the same time as the biopsy to avoid a second anesthesia. With 25 years of experience in childhood cancers under his belt, we felt compelled to listen to this man.

Dr. Cook was very direct and very thorough. He explained to us the two main types of lines that Gracie could have---internal or external. An internal line goes under the skin while the external line is just that---external. There are pros and cons to both: The internal line allows for swimming and is far less to maintain, but it still requires a needle to access. The external line is much, much more difficult to maintain and can easily be pulled out or damaged, but it saves the patient from many, many needle pokes.

In 5 minutes, David and I had to choose. Somehow, in our blindsided stupor, we understood what we had to do, and we were in complete agreement. As Dr. Cook finished his explanation, we looked at each other and simultaneously said "external." The maintenance was nothing to us compared to the agony of watching Gracie get a shot every time we went to the clinic---which we knew was going to be a lot. Some kids do OK with shots, but NOT Gracie. We were already traumatized from the previous evening, when the doctors, nurses, and even the anesthesiologist tried and failed to get an iv in her. (Another story for another time.)

So in went the Broviac (brand name) and out came the bone marrow and the conclusive leukemia diagnosis. I can't imagine how confused she must have been to wake up with this tube coming out of her chest, but as we explained to her that this thing was going to save her from getting any more shots, she sure started to like it. She even named it ---"tubie."

Coming home from the hospital was almost scarier than being there. How were we going to remember which meds to give and when? How were we going to know that she was OK? That she was just sleeping? That she was eating enough? Drinking enough? Going to the potty enough? And---How on earth are we going to take care of this catheter?

At the actual insertion site, there was a clear bandage that protected her exposed skin. This bandage needed to be changed weekly, or more often if the bandage lost its "stick." At the end of the tube was a cap that needed to be disinfected and flushed daily to keep blood from pooling, clotting and rendering the line useless. Lots of alcohol, lots of paper tape, and lots of patience. Still, it was absolutely worth it, because the spinal taps were already providing her with more needles than she could endure.

Wanting to alleviate our stress as much as possible, Nana (David's mom) and Grandma (my mom) did everything in their powers. My mom put her house up for sale and applied for a transfer from Ohio to move here to Colorado. David's mom made several trips from New Mexico, putting her job, her husband, and the rest of her life on hold. Both of them would have given anything to take this pain from us, and both of them sacrificed a great deal to alleviate our angst. (We simply can't thank them enough.)

So, on one of Nana's visits, Gracie and I had a falling out like never before. It was bath time, and Gracie's "tubie" bandage was ready to be changed. She always wore an elastic band around her chest in the tub to keep the cap from getting infected water in it, so we usually waited until after a bath to change the bandage. I don't know what it was (steroids maybe?), but for some reason, Gracie decided when she got out of the bath that she was not going to allow me to clean the site and replace the bandage. I know that the disinfectant stung a little (OK, maybe a lot), but she had never fought me like that before. There she was, naked, screaming, and running away from me with a completely exposed wound site. There I was, chasing her around the playroom with a disinfectant stick, telling her how much trouble she was going to be in, and imagining a second surgery to replace the infected line that I couldn't take care of.

Really, I could not allow her to win this one. The site had to be cleaned, the bandage had to be replaced, and I had to do whatever it took to make those things happen...NOW.

So............... I sat on her.

(If you're not laughing yet, feel free to do so now.)

I literally pinned her arms with my knees and sat on her hips and cleaned that site and put a new bandage on.

And she screamed bloody murder the whole time.

At the time, I was completely mortified. I had never been so forceful with her before, and I hated that I had done this to an already frightened, sick, and hurting child. I felt abusive, cruel, shaken, and ashamed. And I couldn't even begin to process how this had affected her.

Well, I sat in that room for awhile. Grace had moved on, gone to play with something, ready to get back to being a kid. But I sat in that room, frozen, not wanting to admit what had happened, and not wanting to put it behind me, either.

When I finally decided to move on like Gracie had, I had already prepared my defense. I knew that Nana was going to be understanding, and I knew that she would agree with me that I did what I had to do, but still, I knew that it must have been almost as hard for her to hear Gracie's screams as it was for me to carry out my wretched task. Imagining her grief and despair for poor Gracie, I walked out into the kitchen ready to have a validating discussion about my reasons and about how Gracie was going to be OK and about how I might be able to do things better next time.

But Nana wasn't interested in that.

Instead, Nana stood up and hugged me. She hugged me hard and real and deep and long and with more understanding than I could have asked for. And I sobbed and sobbed like a baby.

For as many treacherous moments as there were during our whole ordeal, there were also some absolutely beautiful ones.

The other day, as David and I were rehashing this story we were actually having a pretty good laugh. I mean really, I sat on her. Seriously.

And Gracie was next to us, laughing too. She says she doesn't remember it and wishes she did. I, for one, would be just fine if she never recalls that day, but I suppose time will tell.

There are so many inspiring stories of compassion that happened to us during treatment and I can't wait to share them all. But today, I want to give some extra love and say a special "thank you" to Nana for loving me so well and for giving me a soft place to land that day. I am truly grateful.

Happy Anniversary!

2009-10-02T23:31:00.006-06:00

Today was a special day.

It has been 365 days since Gracie has had to have chemotherapy. It has been 52 weeks since she has had to have a spinal tap. Twelve months have gone by since her blood counts have caused her to be in isolation. And best of all, her chances of relapse have decreased tremendously over the last year.

To mark the occasion, we let Gracie pick whatever restaurant she wanted for dinner. Her choice---Casa Bonita. For those of you who aren't familiar, Casa Bonita is like a glorified Chuck E. Cheese's. It is in this huge building with waterfalls, divers, puppet shows, arcade games, and an honest-to-goodness mariachi band. Anyone with kids in the greater Denver area must experience this extravaganza at least once, and anyone who has already been there knows that you don't go for the food :) But to the kiddos, it may as well be a 5-star restaurant.

Before the restaurant, we took the kids to ride their scooters at a skate park in Colorado Springs. They have been really, really into testing their new found skills and they get some incredible exercise from pushing those things around. It was an intensely beautiful day and the temperature was perfect. Go kids go!

In between the scooting and the dining, we made our way to the cancer clinic for her routine monthly check-up. Feeling celebratory, Gracie and I raced to the front doors and giggled up to the third-floor office. Scooters in the morning, fiesta in the evening---we were on top of the world.

We entered the waiting room and Gracie pulled out her usual Highlights Hidden Pictures book while I rifled through our bag for the markers. As the two of us began our search for "the teacup" I noticed another mommy-daughter duo across the room. The mother was sitting quietly, gazing at her 3-ish looking daughter who was listlessly sitting in her stroller drinking from her sippy cup. The child was red in the face, bloated probably beyond family members' recognition, and her hair was brittle and thinning. "Steroids," I thought. "Poor, sweet child and poor, devastated mom," I thought. I smiled at them, but I knew how meaningless that was for them. I knew that this mother was wishing like hell that she was anywhere but that damned waiting room and that the last thing she really wanted was to be sitting in a room of smiling people. I knew that that little girl couldn't have smiled even if she wanted to, because her meds were making her feel like garbage and she was certainly confused and probably very, very frightened.

And then I looked at Grace, and then I looked for "the teacup" some more.

I wanted to reach out to this other mother and say something... anything.

I wanted to give her comfort,

or camaraderie,

or empathy...

I wanted to tell her

It is going to be OK

But I knew I couldn't.

When your child has cancer, part of your acceptance is in realizing that it might not be OK.

We all sat silently for a few moments, when another mother entered the room with her two children. She had met the first mother before, and they began to compare notes on treatment phases, drug dosages, and steroid rampages. Listening to their stories reminded me of every moment...

every procedure...

every tear...

every victory along the way...

"Oh mooooommmmmyyyyyyyyyy," whispered Gracie excitedly. "I found the teacup," she snickered. She always likes to beat me (and she almost always does).

Snapping back into my moment, our time, I looked at Gracie and deeply thanked God that things are OK for us... and I prayed that things would be OK for the other moms and babies, too.

And then I went searching for "the banana."

Her blood counts were perfect today and we don't have to go back to the clinic for 2 months.

Casa Bonita was a real hoot and for some reason, the food tasted a littler better to me this time...

Happy Anniversary Gracie!

Transitional Survivorship

2009-09-30T16:21:00.009-06:00

"Transition is that time when what has happened to you becomes reality. During the intensity of treatment there may not have been the opportunity to absorb the reality that cancer has become part of your life. Now is the time." (Cure:Cancer Updates, Research & Education, Fall, 2009)

For some, things of the past are better left there---in the past. No sense dwelling on painful memories that can't be undone, no point in rehashing details that will create inner turmoil, don't cry over spilled milk, move on.

Sometimes I really agree with this school of thought, until I realize that "leaving it all behind me" doesn't really work (for me). The ghosts of the past always find their way back into my carefully planned distractions in cunning and unexpected ways, forcing me to choose between real healing and growth or shoving them back in the closet.

The ghost of Gracie's cancer has been haunting me lately.

I'm finding myself with less patience, more worries, and too many tears in the shower. "Will she relapse? Will she be at risk for other diseases? How deep will her emotional scars be? How deep will Jacob's scars be? What if...?"

During treatment, it made sense for me to worry, be impatient, and cry (a lot). There was no question that we were all dealing with intense trauma and I was simply unable to fully acknowledge the weight of this tragedy and the life-long implications that awaited our family. Sure, I talked to some people, I wrote in a journal a couple of times, and I cried (a lot). But I certainly couldn't process the raw, ugly, unspeakable emotions that went through my heart on a daily basis.

"Now is the time."

So, here we are---in "transitional survivorship"---and I'm ready to pour it all out. I'd be foolish to think that someday this will all be behind us, but hopefully with each post I can heal a little more, grow a little more, and cry a little less.

Autumn Recall

2009-09-28T10:44:00.013-06:00

Spontaneity is not my strong suit---and that is a huge understatement.

That is why I was so resistant to taking a fall colors drive in late September, 2006. "Let's just drive up to Cripple Creek (a somewhat nearby town also nestled in the mountains) to see some of the changing leaves," said David on a blustery day when we all REALLY needed to leave the house.

Gracie had just finished her 28 days of steroid treatment. She was so bloated she looked like she was going to burst---really. None of her clothes fit, her long, luscious hair was thinning and brittle and her manic episodes of happiness volleyed episodes of rage, depression, and hunger. Hunger like a bear about to hibernate. I couldn't keep up with her requests for food and I was feeling like a short order cook taking 10 minute breaks now and then to nurse baby Jacob. All of us were screamed at, cried on, and pushed away. It truly felt like our daughter had been stolen from us. In four dizzying weeks, our little Gracie was gone and in her place was a hostile, rampant, ferocious psychopath. Any parent who's been through this with their child will tell you: THE STEROIDS ARE ABSOLUTELY EVIL AND ABSOLUTELY THE WORST PART OF THE WHOLE TREATMENT.

First day of treatment before going to the clinic...

One month later...

Needless to say, David and I were only surviving. The trauma brought us closer together for sure, but the daily grind of treating this child (and for David, working in a horrible new environment whose name I won't mention---not you, WP) was jading us. "One foot in front of the other" was all we could do. Taking time to nurture our own needs was out and Gracie's needs were beyond anything either one of us could fulfill. We were broken, and we knew we'd just have to be that way for awhile.

So when David suggested we go for a drive, my immediate reaction was "uh, no thanks." "We'll just be getting car sick while I'm hunched over an infant seat feeding Jacob and Gracie will be screaming at us the whole time because the seat belt is too uncomfortable and she wants seven more turkey sandwiches."

Ah, but anyone who knows my husband knows that he can be very persistent. Even insistent---when he knows he's right. "Honey, we moved to the mountains of Colorado to enjoy the seasons again and watch the leaves turn. We'll stay in the car so that Gracie isn't exposed to anyone and we'll take plenty of food to keep her happy. I'll get everything ready, you don't have to do a thing."

Sometimes I forget how grateful I am for this man.

Out we went, for the first real outing besides the cancer clinic since July. Armed with sandwiches, hot cheetos and extra pillows, we went to grab some fresh air and a bit of sanity.

It was the first real fall we had seen in years. Oh, how I had forgotten the incomprehensible beauty of autumn in the Rockies. The bright yellow brushstrokes of aspen intermixed with the deep rich evergreens and the intermittent views of snow-capped mountain peaks that beckon you to stare. Jacob slept most of the way and Gracie was lulled by this natural artistry that she'd never before laid eyes upon. We stopped at a random pull-off where there were no other cars to take some pictures and stretch our legs. While Jacob slept, David and Gracie strolled around a bit and I leaned against the car to take it all in. As I breathed the cool, crisp air and allowed the beauty to overcome me, I really felt for the first time that everything would be OK. Somehow, it was going to be OK.

Like many fellow Coloradoans, we turned that drive into an annual tradition. The beauty never ceases to amaze and surprise us.

This past weekend, we took our drive again. Our first autumn drive without cancer treatment. No meds, no immunity worries, and the kids yell at us for other reasons. The changing leaves were a bit more inspiring to me this year, and yes, everything really is OK.

Snowy September Day

2009-09-21T14:52:00.000-06:00

September 21, and it has been snowing all day. Yesterday was almost hot, with that slight chill every time a breeze blew by, reminding us that summer is over, fall is here, and winter is pending.

Exactly three years ago this September, Woodland Park got its first snowfall---an early 12 inches, surprising us former desert dwellers into wondering what we had gotten ourselves into. It was a HUGE year for snowfall, and we found ourselves stranded with double-digit inches blanketing our driveway several times---all the way through May.

But the snow wasn't the only thing that kept us stranded that season. Gracie had been newly diagnosed with leukemia (July, 2006) and was OFTEN unable to leave the house (or have anyone visit for that matter). During a period of chemo called "delayed intensification" (just in time for Christmas!) the kids and I couldn't leave the house for 10 weeks, for fear of catching a cold that would hospitalize our little three-year-old (thanks to Amazon, I actually got some Xmas shopping done). David would have to change clothes and get cleaned up after coming home from work---teachers may as well work in a petrie dish.

The kids and I became pretty proficient with painting, reading, watching TV, and I actually had LOTS of time to do things like catch up on bills, clean house, and fight with the insurance people on the phone. As difficult as it was, there really are some things that I cherish about those days...like actually having time on my hands.

Nowadays, we are doing homeschool, cottage school, Girl Scouts, playdates, camping, biking, scootering, and whatever else we can come up with. We're rushed to pay our bills on time, return our phone calls, or get to the grocery store because we're out of milk. We use a lot more gas, a lot less paint, and probably a lot more oxygen (at least I'm pretty sure I do, panting to get from here to there to there to here on time).

We also watch a lot less TV, have a lot more friends, and get a lot more sunshine.

There is good and bad in all of the seasons of our lives, even the most treacherous and difficult of winters. On this snowy September day, I am reminded of the most treacherous winter of our lives thus far, and as I watch the kids playing with stickers and singing while they color, I am realizing that there was good in that season, too.

And today, I'm even going to have a chance to pay our bills on time.

I nearly lost them both...

2009-09-17T10:41:00.001-06:00

Gracie is so advanced that sometimes I forget just how little she still is. At 6 1/2, she is flying through 2nd grade math and has tested on a 3rd grade reading level. She has always been bright, but please keep in mind that we had nothing but time on our hands for many, many months of her chemo-filled childhood thus far. Sometimes she was even too sick to tackle the staircase, and we spent countless hours reading, and reading, and reading some more (not to mention a ton of TV). While other children had their chance to develop physically, socially and emotionally, Gracie was learning to read. Don't get me wrong, we are extremely PROUD of our daughter's abilities , and we are beyond GRATEFUL for what she has accomplished, but her advancement comes at a bittersweet price.

Jacob may or may not learn to read as quickly as Gracie has, but he has certainly been forced into awkward adaptations of his own. While Gracie and I were reading, baby Jake (who was only 7 months old at her diagnosis) was really figuring out how to entertain himself. He wasn't so much interested in our books, but he learned how to play quietly next to us extremely well. He was also quite unfortunately isolated from other children, but his emotional intelligence became heightened by his place in our hurting and often tumultuous family (thanks to Gracie's " 'roid rages"---fun, really). Fortunately for him, he is more of an introvert (like his mama) and didn't seem to mind the isolation much, but certainly he has his catching up to do with his social development (and yes, I know he has plenty of time).

During our homeschooling today, Grace was working on math while Jacob was playing computer. The first five minutes went OK, but quickly our morning crumbled into a whining, crying, frustrated mess (and the kids weren't happy either).

Jacob needed help with his computer game and Gracie refused to do her worksheet.

My thoughts:

"Gracie can totally handle this math. She is just being difficult, and I'm going to push her forward. This stuff is simple for her and I am NOT going to let her start slacking."

"Jacob can figure out his game on his own. If that game is SO difficult, then he should just switch to another game."

Nice, huh?

How easily I forget that Gracie, although advanced, is still only 6. She may actually need me to slow down and take a kid-friendly approach to her schooling. She may not want to "push forward" and she may just need to skip a day of math now and then.

How easily I forget that Jacob, although versed in playing by himself, still needs my undivided attention sometimes. Sure, he could switch games and solve his frustration by himself, but how much would it mean to him if I dropped his sister's lesson for a moment to give him the help he's yearning?

Thankfully, the whisper in my ear that tells me the right thing to do was actually audible this morning (or, at least, I didn't allow myself to ignore it). I gave Gracie a different approach to her lesson---an approach I knew she would enjoy but had previously avoided because I knew it would be time-consuming. As I expected, she loved it and while she was tediously counting little plastic circles I actually had time to help Jacob figure out how to play the game he wanted. We didn't make it through all of the lessons that I'd hoped to this morning, but my children were happy and I learned the value of slowing down enough to cultivate my relationships with them and navigate their precious hearts to reach a peaceful solution.

You'd think that after nearly losing a child to cancer I would cherish every moment as the brilliant gift that it is. But life moves on and I still get lost in the murky current that clouds my vision and skews my hearing. I am all too often replacing my now with the next thing and the next thing and the next thing.

Today I nearly lost them both. Not completely, of course, but I nearly allowed pieces of their hearts to float away into the abyss of distracted and mindless parenting.

My Prayer:

I pray that I will REMEMBER to SLOW DOWN and LISTEN to the whispers that tell me to change my course and follow the needs of my children... that I will nurture as many moments in their precious childhoods as I can... that I will spend more time seeing their hearts and grabbing those tiny little pieces before they slip away.