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Rejoicing in normal

Well folks. A lot has been happening. And I’ve been keeping it secret. Not because I wanted to not share with you, but because I didn’t want to get it ‘out there’ and then deal with it before I could deal with it. Make sense? No. Sorry.

This will explain things.

Last week I had a biopsy. My PAP a few weeks ago came back abnormal from my annual gyno visit. You know how I love those! And they used the term ‘glandular’ cells and said they needed to biopsy my cervix and my uterus to determine the reason. You know where my head went. Cancer.

I started to panic slightly. My heart beat faster, my gut churned, and I felt the need to go to the bathroom. I started to silently cry while driving in the car with Owen since my doctor called me on my cell phone and that’s where we were when I took the call.

I tried to play it cool and put on a poker face for him and Emma. I tried to talk myself into the fact that it’s just routine and lots and lots of women get abnormal PAP results and they don’t end up with cancer.

But let’s be honest. This is what was racing through my head- my mom is a uterine cancer survivor. You know that once there’s a history there’s a chance, right?

Also, the thought of a biopsy down in my tenders didn’t sound pleasant at all. It sounded downright scary. Frankly, I’m sick and tired of all things female down there. I’ve been to my gynecologist 5 times in the last 3 months. I’ve seen family members less than my doctor.

I had recently gotten the IUD a month ago. It’s going to help, we hope, with my ovary that is stuck to my uterus. They think it’s Endometriosis. So the tiny dose of Progesterone released from the IUD will suppress the Endometriosis and I will be pain free each month. Versus the opposite, which is spending my Aunt Flo time curled in a  ball with a hot pad.

Since the PAP was taken recently after the IUD insertion (which by the way was a little like getting a root canal without novacane, but more on that later) I was hoping that would be the explanation for the abnormal results.

So last week, I celebrated my birthday. Yay. And then the next day I went in for the test. Ew. I was so nervous. My mom knew and McSweetie knew. They were my support. I didn’t tell any girlfriends really, because life is crazy and what’s one more thing to worry about for them- right?

I did however reach out to some internet friends. Sometimes it’s easier typing a question to people you are used to seeing in your computer than sharing things with childhood friends. Sorry, it just is. ANYWAY…. so many of them had gone through the SAME THING!!

They too had LEEPS and ECCs and all came back fine.

Once I was able to feel like I wasn’t the only woman on the planet who had a wonky cervix and uterus, I started to feel better.

Hearing that they survived the procedures, some even saying it was no big deal in terms of pain or discomfort, put me at ease.

So off I went to my appointment. Nervous as hell and feeling like I wanted to run out of there. But I didn’t. I did it and lived through it like a champ. I also felt like I deserved a brand new pair of Leboutins or a Marc Jacobs purse, but I didn’t splurge. I did, however, get a soy green tea frappaccino with whipped cream.

And then I waited…. and waited… and waited.  A whole week. A whole week of faking it on the outside and freaking out on the inside.

Biopsies are a modern day mind fuck. There’s cancer all around me with friends and family and I’m sick and tired of it. I thought, could I be next?

When my phone rang yesterday, and it was the doctor on my caller ID, I said a quick prayer, more like, “Help me Jesus”. Funny, I was driving, again! All this carpooling kids’ activities this summer is ridiculous.

It was the nurse calling me, (good news, right? Doctors only call with bad news, right?) and I heard this, “Your lab results from the Endometrium and Cervical biopsies of the blah blah blah blah blah blah (seriously, it was like a Peanuts cartoon, I couldn’t comprehend her words, she was speaking clearly, but my mind was racing) have all come back, NORMAL.”

Cue tears of joy.

And then my stomach dropped again, my heart raced, and I felt light-headed from the relief. I played it cool and thanked the nurse. She said to be glad and know that we’ll just do another PAP next year and not to worry.

Praise Jesus!!

Seriously. I said a million thank yous to God and called McSweetie and my mom. They both were so relieved.

So what is the moral of this story?

Get your PAPs done. That’s first and foremost. And if you need any followup procedures- do it. AND, you are not alone.

Once I shared with other women what I’d been through, so many of them had been through the same thing. Sure it’s personal and private and doesn’t feel like something you want to go blabbing about. But we talk about pushing children down our canals, surely we can talk about gynecological health and early detection, right? The same way we talk about self breast exams, we can talk about cervical biopsies.

Really ladies, you’re not alone. Speculum fist bumps all around. Damn things- if I see another one before next year, I swear to ……

Okay, peace out- my normal cervix and uterus and I are going shoe shopping.

 

 

 

 

I’m tired…

I’m tired of cancer and its selfish f*ckery.

I’m tired of writing posts dedicated to those who’ve lost loved ones to this disease.

I’m tired of hearing about young people taken too soon.

I’m tired of my heart being broken for someone losing their battle.

I’m tired of good people leaving this earth before they had time to do all the amazing things they should have.

I’m tired of hearing about children left without a father.

I’m tired of knowing that a wife is now a widow and misses her soul mate.

I’m tired of how unfair this scourge is on our world.

But I’m not too tired to keep fighting. To keep standing up for those who fight to survive.

And I’m not as tired as my friend and fellow blogger who will now face a long road ahead, alone without her best friend, husband, and partner, Scott.

Scott passed away on August 12th after his short, and terribly difficult battle of a rare form of cancer.

Now Courtney must not be tired as she tucks each kid in bed at night, gets them ready for school each morning, pays each bill that will come in the mail, go to work to support her little family.

She will stand up and be strong, because that is who she is and what she’s been doing. We can help her. We can give her just a few dollars to ease the burden of life as a single parent. I can’t imagine the hospital and medical bills that will continue to come in the months ahead.

Help us all help Courtney. In loving memory of Scott, please visit our fundraising site and give just your latte money today. If we all pitch in, we can make a significant contribution.

Give Forward, in Memory of Scott Fitzgerald

 

 

PET Scans and Ultrasounds and Dream Miles – RTLF #35

This is my one year anniversary of Reason To Live Friday (RTLF) and yes, it should read #52. Well, too bad I didn’t post one every week!  Okay? Geeze!

As you might remember, I started this series after some dark times and a friend of mine took her life. That same week, a fellow PTA volunteer at my daughter’s school died suddenly from a heart condition. And over the years, friends have lost their children to cancer. Life can be pretty shitty. So I wanted to remind myself that there is always something better and brighter out there to look forward to. Yes, living in the moment is pretty great. But what motivates me is having something to look forward to.

Last week I had an ultrasound. I knew something was wrong with me since each month it felt like my ovary was trying to kill me. As I’m doubled over on the bathroom floor shoving Advil down my pie hole as fast as I can, I’m cursing my monthly curse with  a raised fist saying, ‘damn you ovary, what did I ever do to YOU?’  Okay, maybe not exactly like that, but it was pitiful.

So my lady doctor, who is in fact, a lady, ordered an ultrasound. Now this is the fun part. No, it’s not. It was one of those ugh, I can barely type it, let alone think it, TRANS VAG INAL ultrasounds. With the long pokey thing that looks like a cross between a sex toy and a curling iron, but isn’t at all as much fun as either of them.

The doctor noticed my ovary loves my uterus so much it wants to be friends. Somehow it has attached itself to the uterus and isn’t floating out in ovary land like it should. So I guess I’m thankful for modern medicine to see these things for me and I don’t have to just make a wild guess at handling my evil cycle every month with more advil and more exercise. Which is what one doctor told me many years ago would help with my endometriosis. More exercise? I wanted to kick her in the taco.

Anyways, I don’t have a plan just yet. We’ll see if the IUD is the answer or surgery. Gee it sucks being a woman, doesn’t it?

PET scans. No, these aren’t where you take some kind of device up to your dog or cat. A Positron Emission Tomography scan is a really fancy test for cancer or where cancer is in the body. The definition includes the words gamma rays, so it sounds like Spiderman or something. My mom went in for a PET scan last week. I went with her for moral support. It’s a long process. You have to have a no carb diet for 72 hours, like seriously, no carbs. Not even an olive. It registers on the carb scale believe it or not. By the time I drove her to her test, she was weak and had lost 7 pounds. No wonder people swear by the Atkins diet.

We knew she had a spot in her chest that needs removing from uterine cancer she had 10 years ago. What we didn’t know if it was anywhere else in her body, or if it had grown bigger.

Yesterday she met with her oncologist to discuss the results of the scan. And. The news. WAS GOOD!! Just the same old spot from before that they’ll remove with surgery and it’s not bigger or anywhere else. Praise Jesus!!!

The fear of chemo or radiation in her future was underlying, and being able to virtually see in the body like that and know she only needs surgery, what a miracle of science!

And last on my list- The Dream Mile at Owen’s school. A tradition of 20 years where the fastest runners of the mile get to compete in front of the whole school. The top 12 boys and 12 girls are picked from their qualifying PE fitness tests. Owen qualified this year and was excited to race. He runs constantly with soccer practice and soccer games. This seemed like a piece of cake. Only, the catch was he hadn’t played soccer in about 3 weeks since he’s between seasons. The body de-conditions rapidly.

But regardless of his waning stamina, he was mentally ready! He was so excited. Even wore his new Nike lunar glides.

I went to the school to cheer him on along with the other parents. The whole school was out on the field and playground. Each class had made signs. Owen’s class made some for him. Now, I might have teared up and started to cry. It’s a good thing I was wearing sun glasses. I didn’t see any other parents crying!! But the cheering and fanfare for the runners was so special.

Just the gift of running and being healthy is such a huge wealth and I don’t take for granted my kids’ abilities.

The race started and I knew he was going to burn out faster than he hoped. But that’s okay. He ran strong, I could see he was fighting the pain of a side ache.  He came in 5th. I think he was a little bummed. But his classmates were supportive and he has already started planning his strategy and training for next year.

I was so proud!!

So there you go. My silver linings of the last couple weeks. I hope you can count your silver linings and look for the bright side.

 

 

Ice Cream Day- Remembering Kyle

Awhile back I posted Kyle’s Story. About a little boy that was a friend of ours who passed away from a very merciless childhood cancer. Please read his story when you get the chance.

Today would’ve been Kyle’s 12th birthday. On Kyle’s last birthday on earth, 4 years ago, he asked his mom if he could have ice cream all day. And he did. Kyle passed away a few short weeks afterwards from a Diffuse Pontine Intrinsic Glioma. A very rare, very deadly brain cancer.

We keep our friend Kyle alive in spirit with doing the things he loved. Remembering to find the joys in those we have with us.

So pick your flavor and dig in!

 

The following is the story Kyle’s mom posted to her blog after he passed away. Neither of us wrote it, so you know. But it captures loss and grief so clearly.

 

Waterbugs and Dragonflies

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.
“Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you think she is going?” Up, up, up it slowly went….Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return…

“That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second… “Where do you suppose she went?” wondered a third.
No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea”. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.” “We promise”, they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings…The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

The dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.” Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…

“I can’t return!” he said in dismay. “At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.”

And the dragonfly winged off happily into its wonderful new world of sun and air…….

Reason To Live Friday #24

This annoying dang holiday season. Are you wondering if I’m giving you whiplash? Do I spin a 180 turn each and every post? First complain, then gush? I know. I know. Try living with me.

Last year I wrote about how the holidays suck for some of you if you’ve lost a loved one. Holidays are like a trigger of emotions. They make you ponder on Christmases past and when life has changed permanently, it can be hard.

But then I thought of something. Maybe those little reminders are like the loved ones past speaking to us. Bear with me.

When my friend Reshma lost her daughter to Siona from Leukemia, she woke up one morning with a pressure point on her chest over her heart in the shape of a butterfly. You know when you sleep hard and the pillow case leaves an imprint on your face? Like that. I know, weird. But butterflies were a favorite of 6 year old Siona and this silhoutte of one was perfectly formed. It lasted several hours before it just faded. Reshma cherished her little butterfly form she had over her heart for the few hours it was there. Like Siona had given her a kiss.

Now don’t get all weird on me. I’m not saying that there’s messages from beyond. I’m not going into paranormal stuff here. You can think that or not. I’m cool with it.

I’m saying that the holidays hold so much hope and joy. That I’m going to hold on to the parts that are dear to me. I’m thinking about my dear, dear old friends who are living through their first holiday without their mom, sister and daughter after she took her own life in May. Their grief is palpable. Their grief is ripped open anew with each box of ornaments.

So here’s my list of what to do to get through:

Ready? Take a deep breath and go into downward dog yoga pose. Just kidding.

But breathe deeply anyway.

Hug the ones that are with you. Yep, just do it. Even if they piss you off. Stephen Stills was right with his song, “Love the one you’re with”.

When you see a reminder of a loved one gone- smile at it. Close your eyes and hold it to your heart. Say, “I miss you and I love you and I know you’re still here with me.”

Take last year’s coat or boots that don’t fit anymore or are hardly used and bring them to a charity. Someone needs those more than you.

Write down your feelings. If you blog or not, write that stuff down. You don’t ever have to read it again, but getting it on paper is helpful.

And one more time, love the ones you’re with. Dang it. Hug them, smush them and tell them you are happy they are with you.

Well, I’m not Dr. Phil. I’m not a trained professional. I’m just trying to lend a hug, and let you know I’m here for you. We can do this together.

RTLF #17- Kyle’s story

This month I’m dedicating my Reason To Live Friday posts to September’s Childhood Cancer Awareness month. Did you know cancer among children under the age of 15 is the second cause of death? Did you know that there has been only one new pediatric cancer drug approved by the FDA in the last 20 years? Shameful.

If you fell in love with Siona, and Ashley, you will definitely fall in love with Kyle.

Kyle was like any boy. Well, okay, he wasn’t just ANY boy. He was Kylie Wylie. The fearless 3 year old that learned how to ride a two-wheeler before his older brother, Nicolas. The youngest of two boys of my friend Christin. He loved football, riding bikes, swimming, popping wheelies, ice cream sundaes and dragonflies.

Kyle Roger
January 17, 2001 ~ February 7, 2009

Just a couple weeks after his 6th birthday, Kyle was complaining of double vision. A misshap against the coffee table and his older brother Nicolas, caused Christin to be concerned if he bumped his head a little too hard. I mean come on. Boys play rough. This wasn’t new. But after tests and an MRI, the news that they didn’t ever expect, nor would any parent  even dream of, or fathom, was given to them. Kyle had a Diffuse Intrinsic Pontine Glioma.

If you want to get depressed, Google it. It’s horrible. This type of cancerous brain tumor is inoperable and terminal. Most kids have just a year to live after diagnosis. There’s only about 200 cases diagnosed a year. I think you have more chances of winning the lottery or getting struck by lightening, than getting this type of cancer. But this is no lottery. The payload is heavy and cruel.

Kyle would make the drive with his mom for 2 hours from his home just south of the Canadian/Washington border to Seattle’s Children’s Hospital. Groundbreaking treatments and clinical trials would be used to create a miracle. I would never entertain for a second, that my kid WOULDN’T be a miracle. If it were MY kid, the cure would be found in the nick of time. Kyle was special. He deserved to live. No kid deserves to die of cancer. I know this is what Kyle’s family must have thought each treatment day. Please, please let there be a miracle.

Kyle defied odds and lived a whole 2 years from his diagnosis. His drive never stopped. I got to meet him once for a benefit at the Experience Music Project. A band came to play and donated their time, Jake Locker (now QB of the Tennessee Titans and then  University of Washington quarterback) donated Husky memorabilia signed for the cause. We sold t-shirts with OO-UM-GOWA Kylie’s got the POWA! printed on them. I don’t know where that phrase came from. He just made it up. It was his mantra. His tag line going in to treatment. He would kick cancer’s ass. Or at least let it be known that he wouldn’t go down easy. Even just meeting this little boy once, I was under his spell. We sent cards and wishes to him all the time. His aunt, Melissa, is one of my best friends from college. This was the connection. Such a close family. Rallying around their boy to give him an ultimate ride despite the hell his body was going through.

I’ll never forget the Facebook status on February 7, 2009 from Melissa that read, “Kyle is popping wheelies in heaven now.” I couldn’t believe it. He was so strong for so long. And then that evil tumor wouldn’t relent. Dammit. Thinking about Kyle’s mom, holding him, letting him know, that he can go now, his work is done, breaks me down to pieces every time. His memorial was, how do I say? Glorious. Hundreds of people. We all wore hot pink. His favorite color. For a cool 8 year old, Kyle danced to his own drum. He made friends, shared his light, made us all aware of the precious gift each sunrise can be.

On January 17, 2010, what would have been Kyle’s 9th birthday, his mom and his brother celebrated by eating ice cream for breakfast lunch and dinner. Dozens of us did the same in solidarity. We posted our flavors on Facebook and called it Ice Cream Day. Kyle taught us that sometimes, you have to eat dessert first. We do this every January 17th. Eat ice cream for breakfast, lunch and dinner. Maybe you will too.

I did not write the following, but Kyle’s mom posted it on their blog soon after Kyle passed away.

It’s the story of Waterbugs and Dragonflies. It will leave you weeping. I’m sorry. But if you’ve lost a loved one, you can be comforted in the dragonfly’s story.

Waterbugs and Dragonflies

Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.
“Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you think she is going?” Up, up, up it slowly went….Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return…

“That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second… “Where do you suppose she went?” wondered a third.
No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea”. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.” “We promise”, they said solemnly.

One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.

When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings…The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!

Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.

The dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.” Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…

“I can’t return!” he said in dismay. “At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.”

And the dragonfly winged off happily into its wonderful new world of sun and air…….

RTLF #16- Ashley’s story

I am doing a series of stories for Childhood Cancer Awareness Month. I’m reading Mary Tyler Mom’s account of her baby daughter Donna and their journey through her cancer. She chronicles Donna’s cancer in a series for Huffington Post for this month of September. You should follow it too if you aren’t yet. And share it. Please, please share it.

Last week was Siona’s story. A heart-rending tale from Siona’s mom of love and loss. Today’s is about Ashley- a survivor. But it’s not always rosy and easy. This is for sure.

“I want to be unaware of childhood cancer.”

This is what my friend Christin said when I asked her to help out with my blog series this month. I don’t blame her. She’s pretty blunt and to the point.  Her 7 year old daughter Ashley is a cancer survivor. Wouldn’t you want to hide under a rock and pretend there is no such thing as childhood cancer? Especially since for 2 1/2 years, they lived the days of treatments, fevers, surgeries, infections, hospital stays… more acutely aware than most of us.

I’ve known Christin and family for 6 years. Ashley was an infant when I met Christin. Tons of fun and a huge personality is how I describe my friend. She never minced her words on how hard it was raising a 1 1/2 year old boy with an infant daughter. Oops, Christin got knocked up when Dean was only 3 months old. She cried when she learned she was pregnant. I would too. But that doesn’t make her any less grateful of a mother to two healthy children.

Ashley, age 1. Uhm, yeah, that is cuteness alright!

If you met Christin you would notice her huge smile, her charisma and her wit. She’s as sharp as a tack and cracks me up all the time.  She’s a stay at home mom to two kids, a first grader and a third grader. She has a husband who runs a company called Baconsalt. She’s never idle or bored. She is always on the move. Now that her kids are in school, she has some ‘normal’ mom time. No more trips to the hospital and days for chemo. But is she doing cartwheels? Hmm, not quite.

I asked her if she thinks about Ashley’s leukemia every day, or has life started to distract her from all that. Yes, there are days she is able to be carefree, but once a month Ashley goes in for blood work, so there is that reminder.

When Ashley had her last chemo back in December 2011, well wishes and congratulations were abound for the family. Every one was celebrating. Christin had a quiet reserve. You wouldn’t know it, but on the inside, Christin was terrified. The safety of treatment, scrutiny, observation and specialists was not going to be routine anymore. What paralyzed her most- the thought of leukemia returning.

You don’t get a Cancer Free card when you are a kid with leukemia, unless you’ve been 5 years in remission. Ashley is coming up on her 3 year mark. The biggest chance of relapse is in that first year. Statistics and numbers occupy your thoughts.

Let me take you to the beginning:

Ashley was diagnosed with ALL acute lymphoblastic leukemia in September 2009. This is called the ‘good kind’. I know, stupid, but bear with me. She had the  Type B cell kind, again, the ‘better’ one. (Type B is  for better) (Type T is for terrible). There’s little alliteration  tricks to help parents remember. Although if you have a kid with the Type T, I’m doubting they use the same one.

Ashley had been a tippy-toe walker since around the age of 2. They were trying physical therapy and treatments to help her walk flat footed. The tippy-toe walking had been severe enough to cause Ashley not to be able to run, jump and land on her feet. So when a 4 year old Ashley went to her pediatrician wearing a diaper, Christin explained that Ashley said she couldn’t feel when she had to go poop. So to avoid accidents, she was wearing a diaper. Even though she is potty trained, Ashely knew, 4 year olds don’t wear diapers! So their doctor ordered an MRI to check for any nerve damage from the tippy-toe walking. The MRI showed spots on Ashley’s spine. The radiologist happened to glance up on the scan and catch them. Attention was focused on Ashley’s pelvis area, not her spine, so for the radiologist to look up and notice- was what changed the course of their lives completely. Hindsight also says, it’s what saved Ashley’s life.

After the MRI came blood work to check those spots. It came back clean. Then a CT scan was ordered. Came back clean. Thanks to the perseverance of their pediatrician, she wouldn’t stop until she knew what those spots meant. A spinal tap was ordered. The bone marrow aspiration tested showed leukemia. That day was when the bottom of the world dropped out beneath Christin and her husband Dave.

Immediately, surgery for the port access was done, chemo started and the dizzying, numbing existence of living at Children’s Hospital in Seattle began. Because the leukemia was caught at 33 %,  eight days after diagnoses and chemo in her system, the doctors announced the leukemia was essentially gone.

Ashley during treatment. I can hear that laugh!

Ashley is a stubborn, head strong, iron willed girl. I’m thinking she told cancer to Fuck off and it did.

That damned port was the bane to Ashley’s existence. For 2 1/2 years she hated that thing. It bothered her terribly. Access times were agony. Yes, it was part of what was saving her life. But tell that to a 4 year old!

Last December when chemo ended, it wasn’t until that port was removed a week later did Ashley feel liberated.

I asked Christin how wonderful that Christmas must have been for them. Ashley being chemo free, no more port, no more frequent visits to Children’s. She said it was awful. Christin was terrified.

What if the leukemia came back? This thought permeated Christin’s existence. The safety net of treatment was gone. Without it in her system is the leukemia going to rear its ugly head again?

This year, she says, her breaths are a little deeper than last year. As they approach the 5 year mark, there’s a release of tension uncoiling, slowly, ever so slowly.

After the new year, then blood work will be every three months. Which sends her thoughts into wondering if she is further from being checked frequently and what danger this poses. You can’t blame her for the paranoia. You can tell a parent that statistics of their children being hurt in a car accident, or riding their bike, are more than their risk of getting cancer.

But a cancer parent veteran is always that. A cancer parent. We haven’t even begun to discuss the guilt you can feel as well when you’re the parent whose kid lived. And you know parents that wish they could worry over blood work.

It’s a constant cluster fuck. Excuse me, but it is.

What we can focus on is Ashley at this day and time is a beautiful, thriving 1st grader. She had her tippy-toe surgery to correct her feet. Now with that behind her, the world is her oyster. She is still as stubborn as ever. But a sassy Ashley, is a healthy Ashley. And when you’ve seen your kid limp and exhausted from chemo and steroids on the couch laying with a blanket and stuffies, you take those parenting moments that make you want to pull out your hair. Because it’s life.

Ashley today. Her hair is long and wavy and beautiful. But her best accessory, that big smile.

Please spread the word of Childhood Cancer Awareness. Spread Ashley’s story, Siona’s story, Donna’s story.

Thank you.

RTLF #15- Siona’s Story

I had mentioned last week that I will do a series of stories for Childhood Cancer Awareness Month. I’m reading Mary Tyler Mom’s account of her daughter Donna and their journey through her cancer. She chronicles Donna’s cancer in a series for Huffington Post for this month of September. You should follow it too if you aren’t yet. And share it. Please, please share it.

My friends, the Shahs, found out in 2008, their daughter Siona, had Leukemia. She was only 4 years old. Not that any age is okay to get cancer. Isn’t it funny when we say that? She was only 2 years old, or 10 years old?  How  about 90? Would that be okay?  I don’t know.

I asked Siona’s mom to write her own words for their story. She does a beautiful job. Please read and share to spread Siona’s words of strength. I’m amazed at the Mary Tyler Moms and the Reshmas that I know.

And pay attention to the end. Siona’s older brother Sohil included a list of Siona’s lessons. We forget sometimes how siblings are affected. How one day, you become an only child. What burden does that carry? Sohil is a clever, smart and easy going young man. I admire him too for his strength and wisdom. Everyone can learn from Siona’s story-

This is Siona. Smiling like always.

Written by Siona’s mom- Reshma~

When your children are born, as parents you have this feeling that everything is well with the world.  You actually wonder what you ever did prior to having them and couldn’t imagine your world without them in it.
As they grow, every now then, they get ill and for a moment you get that feeling in the pit of your stomach.   The wave of relief when the doctor tells you it’s nothing serious, puts you back in that ‘all is well with the world’ place.
On a hot summer day in 2008, I took the kids to their first swim lesson together.  My son did well, but Siona, my daughter, cried through the whole lesson.  It was very unusual for her to be clingy and cry so much.   I made a note to ask the doctor about it later that day.  I was taking Siona in for a checkup because she had been sleeping a lot and she had a low grade fever.
The doctor took a look and ordered blood work and said it was probably mono, but blood tests should confirm it.  I went about my business thinking it would all be fine…the doctor said so.
The next morning, my husband woke me up early to say the doctor had called (at 5:30 a.m.) to say that we had to get Siona into Children’s ER in Seattle.  No explanation.  They couldn’t discuss it over the phone.
From that day onward life was never the same and would never be ever again.  Siona was diagnosed with High Risk T-Cell Leukemia on June 26th 2008.  We didn’t go home that day.  Siona was admitted to an overflowing cancer ward.  I will always remember that first night…listening to the other children in the room crying in pain and being sick.  The thought of Siona going through what those children were going through was unbearable.
Siona showed spunk from the very beginning.  When the tech came in to draw blood for the tenth time that first day she had no more fingers left to poke, except one.  She was mad, it was late and the tech couldn’t get blood.  I screamed at him to leave and Siona calmly gave him her only unbandaged finger – the middle one.   Appropriately, it symbolized my feelings to a tee. ‘Take that cancer!’
Life puts many obstacles in our way and how we choose to deal with them makes us who we are.  Children don’t even see these obstacles.  They are usually experiencing everything for the first time, so to them, if it is new it must be normal…right?  To Siona, every kid was doing the things she was.
Siona never cried about what was happening to her.  She cried when she was in pain when it was at its worst.  She took the daily needles in the chest, feeding tubes shoved down her throat and the constant prodding and poking in stride.  The long hospital days and long stays were accepted without question.  She would look around in the waiting room and comment on another girl’s cute shoes or notice a child crying and say, ‘He/she is not happy today.’  I could tell it would affect her.  She was always smiling and wanted that for the other kids too.  Her goal was to get out of the hospital as fast as she could, so she would opt out of the ‘let’s count to 10 before we rip this tape off your chest’.  Honestly, there is no gentle way to take a needle out of your chest!  She would say, ‘Just do it!  I want to go home and ride my scooter!’
The first year was the hardest.  The chemo made Siona very sick and also shut down her adrenal system.  She was on a feeding tube most of the first year.  She was a sight!  She would be running, riding her bike, and playing without a care – all with the tubes hanging out of her.  Cancer wasn’t going to slow her down.    As she grew older, Siona started to notice that she wasn’t getting to do the normal things other kids her age were doing.  The first day of kindergarten and getting on the school bus she had always wanted to get on weren’t going to happen for her.  We would keep the windows shut so that she couldn’t hear the kids outside.  Once, and only once, did she say to me, ‘Mama, I wish I was normal.’
Children with Leukemia go through a longer course of therapy.  Girls go a total of 2 years, boys 3.  After the first intense year, Siona went on maintenance therapy for the next year.  She was doing well until March 26th of 2010 (ahhh the 26th again!).  After a routine blood test the results showed some abnormalities.  Siona had relapsed.  It was like re-living the first time we found out, but worse.
With cancer you are bombarded with statistics.  Your child’s chances of survival are based on percentages.  It’s terrifying.  Siona’s chances weren’t great this time around.  The first time she had had an 85 % chance of surviving.  Now?  5% if she was lucky.   Siona needed a bone marrow transplant and donors for children of Asian descent are hard to match.  Her brother, who had decided he was going to save her, wasn’t a match for her.  We found two blood cords that may have worked, but first we needed to get Siona into remission.
We went to St. Jude’s in Memphis where they are 10 years ahead of all institutions in the search for a cure for childhood cancer.  We found out that Siona actually had a rare subset of Leukemia called ETP Leukemia.  It was newly discovered by doctors at St. Judes.  We were thrown back to the beginning…again.  A whole new diagnosis for which chemo is useless.  Siona should have had a transplant while she was in remission.  We were devastated.
We brought Siona home because that is where she wanted to be.  St Jude’s had new treatments, but they were all experimental.  No guarantees.  Siona was all about ‘Home’.  She just wanted to be home with her brother and family.
Through Siona’s illness she remained positive and would tell US everything was going to be okay.  We would call her the ‘wise one’ because she would say things that a 4 or 5 year old would never say.  She observed people closely and if she heard or saw that someone was hurt or down, she would try to cheer them up.
She once said to her brother who was sad to see grandparents go home, ‘Just because they are gone doesn’t mean that you won’t see them again one day.’  She was very practical girl in matters of the heart.  Her fashion sense on the other hand was a different story.  She was all about purple (a happy color in her mind), pink, and lots of bling!
She lived everyday to the fullest.  At least to the point her body would let her.  She loved holidays; Halloween, Diwali, and Christmas.  She loved to be with family and sing, do her arts and crafts, dance in her princess dresses and heels, and to giggle with her cousins.  She would look into the sky at butterflies and birds and wondered how it would feel to fly ‘free’ as she put it.  She taught many of us so much about life.  It was hard to think someone so young could be so mature and matter of fact.
She was so excited for Christmas 2010 to get here.  We know she hung on for that reason.  During her last week with us, she said her goodbyes in her way.  She told me, ‘Mama, I’m tired now.’ She made calls to family and left messages in the middle of the night.  She told me to ‘Be calm Mama, be calm’ right before the paramedics came to get her.  The night before she passed she told her Dad, ‘Daddy, I’m flying free!’
She is free to fly high in the sky now.  Free from pain.   We miss her terribly.  The house is too quiet without her loud voice and happy chatter and singing.   How do you learn to be an only child if all you can remember is having a sibling?  How do you parent an only child when all you remember is parenting two?  We are all re-learning how to live life without Siona.  As she said, ‘Just because she is gone doesn’t mean we won’t see her again one day.’
After Siona passed away, her brother sat down with his Dad to write down everything he had learned from his little sister.   He learned the most from his sister.   Her lessons to him became Siona’s Life Lessons for us.   He tries to live everyday with as much zest and enthusiasm as she did.  She would be proud.  We have included ‘Siona’s Life Lessons below.  They keep us strong and focused…living everyday with the way she would want us to – with purpose, making a difference.

Siona and her mom, Reshma

‘Siona’s Life Lessons’:

  1. Live with a smile.
  2. Never give up and always try your best.
  3. Be kind and accepting of people.
  4. Don’t complain about things that aren’t fair.
  5. Be happy with the small things in life such as hot cocoa at Starbucks or going to lunch with daddy, mommy or Mr. Lampy (as she called Sohil sometimes).
  6. Be positive and laugh out loud.
  7.  It’s okay to fly into the sky as long as you have lived with a purpose.
  8.  Always be kind to spiders, because they too have a Mommy and Daddy.
  9.  Always be truthful and tell it like it is.
  10.  Always enjoy moments – big or small.
  11. Be “just the way you are”.
  12.  Make a difference in people’s lives.

The backs of the shirts for our Team in Training for the Rock n Roll marathon and the Big Climb for the Leukemia Society. We are proud to wear Siona’s angel wings.

Thank you Reshma for sharing Siona’s story with us. It’s beautiful and inspiring. I know it was hard. I love you for helping me spread the word for you.

http://www.sionashah.com/

RTLF #14 – week 1- Cancer effing sucks

This is a repost from Friday- Gmail is being sneaky and sending emails to folk’s spam folders if they have ’causes’ in the subject. Hoping if you didn’t get this on Friday- you will today. Or if you did get it, you don’t mind seeing it again. Thanks!

September is Childhood Cancer Awareness Month.

“cancer is still the second leading cause of death in children younger than 15 years old (after accidents). About 1,340 children are expected to die from cancer in 2012.” (American Cancer Society) Does that not scare the shit out of you?? It does me.

How many people do you know who have or have had cancer? How many children do you know who have or have had cancer?

Sadly, my answer is 3. I know personally, 3 children that have had cancer. Two of them passed away. One of them is thriving today.

The way it comes into their lives and moves in like a horrible house guest, turns lives upside down.

I hope you’ve been reading Donna’s storyMary Tyler Mom is a writer the Huffington Post is featuring all this month. Her daughter, Donna, passed away in 2009 from a brain tumor. Thirty-one entries of what that family went through. We’re on day 7 today. I’m on the edge of my seat when I read it, barely breathing, thinking of what they endured.

My friend Christin’s son Kyle, passed away of a brain tumor in 2009. He battled for more than 2 years. He made it to his 8th birthday, and then slipped away soon after. Kyle defied all statistics. Most kids battling his kind of tumor only last a year, maybe 18 months. He lasted longer. Kyle was one of those kids you don’t forget about. We honor him every year in the Run of Hope in Seattle through Children’s Hospital. And we remember his birthday on January 17th as ice cream day. You are allowed to give your kids, and yourself, ice cream for breakfast, lunch and dinner. Because Kyle was smart that way. He knew how to live to the fullest, even if that meant dessert first!

This is the video they played at Kyle’s memorial that a friend of the family put together. I watched it recently and after 3 years, it still brings me to sobs. Please watch, but be ready with kleenex. http://vimeo.com/3262788 (copy and past the URL in your browser, or go to Kyle’s blog I have linked below.)

My friends the Shah’s daughter, Siona, passed away New Year’s Day, 2011 after her battle with leukemia. She was 6. 6 years old. She hadn’t even had a chance to go to Kindergarten. She was diagnosed soon after she turned 4 and those 2 years were spent battling for her life. They thought she had the ‘good’ kind of leukemia. The kind where kids recover and bounce back. When the cancer returned during the spring of 2010, we were in shock and disbelief. Within a year she was gone. Even after a valiant effort at St. Jude’s.  Siona wanted to have Christmas. Her doctors told her family to move it up on the calendar. They kept it on the 25th like it is. And she enjoyed every part of that Christmas.

My friends the Lefkows found out about their daughter, Ashely’s leukemia in 2009. She had the ‘good’ kind too. Thankful for them, she is a thriving 1st grader who was on the swim team this summer and loves building Legos with her brother and dressing up with her girlfriends. I wrote about the Lefkow’s journey here, and how glad we were when she finished her treatment in December.

I will have each mom (Kyle’s, Ashley’s, and Siona’s) write a piece for my blog this month so you can read their words. Unless you’ve lived it, you can’t imagine it.

We need to spread the word. A statistic says that in the past 20 years, only one new cancer drug has been improved for pediatric cancer. This is unacceptable!!

I won’t make this political, but for example, wouldn’t the billions of dollars being spent on this year’s campaigns be better used for cures and research? Makes me sick!

I wish I could say that I won’t know any more children who will have cancer. I won’t know any more families who have to go through this. Dear God, not mine! Right? Isn’t that what you’re thinking? It could be anyone. We can’t put a bike helmet on or knee pads to prevent it. We can’t keep our kids from junk food or too much TV, or buckle them in any safer in their car seat or have them take their cell phone going to their friend’s house. It just happens. Cancer just happens.

So share, spread, speak. We need to save our children.

For Donna, Kyle, Siona and Ashley, and many, many more.

Donna’s Cancer Story- read here

Kyle’s Blog- read here

RTLF #14 – week 1- Cancer effing sucks

 

this is a repost from Friday- Gmail is being sneaky and sending emails to folk’s spam folders if they have ’causes’ in the subject. Hoping if you didn’t get this on Friday- you will today. Or if you did get it, you don’t mind seeing it again. Thanks!

September is Childhood Cancer Awareness Month.

“cancer is still the second leading cause of death in children younger than 15 years old (after accidents). About 1,340 children are expected to die from cancer in 2012.” (American Cancer Society) Does that not scare the shit out of you?? It does me.

How many people do you know who have or have had cancer? How many children do you know who have or have had cancer?

Sadly, my answer is 3. I know personally, 3 children that have had cancer. Two of them passed away. One of them is thriving today.

The way it comes into their lives and moves in like a horrible house guest, turns lives upside down.

I hope you’ve been reading Donna’s storyMary Tyler Mom is a writer the Huffington Post is featuring all this month. Her daughter, Donna, passed away in 2009 from a brain tumor. Thirty-one entries of what that family went through. We’re on day 7 today. I’m on the edge of my seat when I read it, barely breathing, thinking of what they endured.

My friend Christin’s son Kyle, passed away of a brain tumor in 2009. He battled for more than 2 years. He made it to his 8th birthday, and then slipped away soon after. Kyle defied all statistics. Most kids battling his kind of tumor only last a year, maybe 18 months. He lasted longer. Kyle was one of those kids you don’t forget about. We honor him every year in the Run of Hope in Seattle through Children’s Hospital. And we remember his birthday on January 17th as ice cream day. You are allowed to give your kids, and yourself, ice cream for breakfast, lunch and dinner. Because Kyle was smart that way. He knew how to live to the fullest, even if that meant dessert first!

This is the video they played at Kyle’s memorial that a friend of the family put together. I watched it recently and after 3 years, it still brings me to sobs. Please watch, but be ready with kleenex. http://vimeo.com/3262788 (copy and past the URL in your browser, or go to Kyle’s blog I have linked below.)

My friends the Shah’s daughter, Siona, passed away New Year’s Day, 2011 after her battle with leukemia. She was 6. 6 years old. She hadn’t even had a chance to go to Kindergarten. She was diagnosed soon after she turned 4 and those 2 years were spent battling for her life. They thought she had the ‘good’ kind of leukemia. The kind where kids recover and bounce back. When the cancer returned during the spring of 2010, we were in shock and disbelief. Within a year she was gone. Even after a valiant effort at St. Jude’s.  Siona wanted to have Christmas. Her doctors told her family to move it up on the calendar. They kept it on the 25th like it is. And she enjoyed every part of that Christmas.

My friends the Lefkows found out about their daughter, Ashely’s leukemia in 2009. She had the ‘good’ kind too. Thankful for them, she is a thriving 1st grader who was on the swim team this summer and loves building Legos with her brother and dressing up with her girlfriends. I wrote about the Lefkow’s journey here, and how glad we were when she finished her treatment in December.

I will have each mom (Kyle’s, Ashley’s, and Siona’s) write a piece for my blog this month so you can read their words. Unless you’ve lived it, you can’t imagine it.

We need to spread the word. A statistic says that in the past 20 years, only one new cancer drug has been improved for pediatric cancer. This is unacceptable!!

I won’t make this political, but for example, wouldn’t the billions of dollars being spent on this year’s campaigns be better used for cures and research? Makes me sick!

I wish I could say that I won’t know any more children who will have cancer. I won’t know any more families who have to go through this. Dear God, not mine! Right? Isn’t that what you’re thinking? It could be anyone. We can’t put a bike helmet on or knee pads to prevent it. We can’t keep our kids from junk food or too much TV, or buckle them in any safer in their car seat or have them take their cell phone going to their friend’s house. It just happens. Cancer just happens.

So share, spread, speak. We need to save our children.

For Donna, Kyle, Siona and Ashley, and many, many more.

Donna’s Cancer Story- read here

Kyle’s Blog- read here