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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 #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

Heartbreak and parenting. There is not one without the other.

Warning- this post gets preachy, sentimental, and down right tearful. Some sing through their sadness, paint or go running. I write. So read and bear with me. Get a latte, a cocktail, whatever- this is going to take awhile.

I gripe a lot about my children, and my poor husband. But the reality is, I could not live without them. And I hope I never have to. With that said, I have seen a lot of heartache from parents I know. Losing a child is THE most devastating part of life I can think of. And anyone who knows someone who has lost, thinks, “Gosh, I’m guilty of thinking, Glad it’s not my kid. But how horrible for them.”

I was originally going to write about the upcoming anniversary of our friends’ daughter’s passing, Siona Shah. She went to be an angel on New Years Day 2011. As a community and neighborhood we were heartbroken for this family’s loss. Siona bravely battled Leukemia and was only 6 when she died. Her parents, Nigam and Reshma and her older brother, Sohil, like to talk about her passion for purple, her love of princesses, unicorns, the color pink and butterflies. We climbed the Columbia Tower to raise money for LLS (Leukemia and Lymphoma Society) and dozens of people ran with Team Siona in the Rock n Roll marathon to raise money for LLS. I have a new found respect and admiration for the Be the Match Foundation and St. Jude’s Children’s Hospital. Both organizations were there for Siona and her family. I know many lives have been touched and maybe saved because of her legacy. My heart is always with you Shahs.

But then this week of holiday happiness between Christmas and New Year’s, when kids are playing with their toys, parents are trying to gain headway on the mess, and looking forward to when school starts again- a sad stream of Facebook statuses was coming through my feed. A little 10 year old boy had accidentally strangled himself with a necktie and his family was praying for him to come through. For two days they kept a prayerful vigil at Harborview, our renowned trauma hospital in Seattle. Hundreds of people prayed for his recovery, there were rosaries, vigils and masses said for him. But to everyone’s dismay, he passed on Thursday to be with his Lord. Little 10 year old Anthony Strauss was now an angel. But what some of us knew, he is joining his sister Gloria, an angel who passed before him.

Little Gloria Strauss’ story was covered in our Seattle Times in the months before she died of a rare, incurable cancer. Many grew to be fond of Gloria, prayed for her and her parents, her then 6 siblings. She passed away at age 11 in 2007. Her family knew she was now an angel. No question. They set up a non-profit to help others going through grief and loss. To lift them in prayer, hope and faith. The way their family, church and friends did for them.

Now they face it all over again. To grieve over their child. What good could come of this? How could God let this happen?

I don’t know.

But this I do know. We have the power to reach each other. To send whatever we can, whether it’s money, prayers, sympathy. There is always death and sadness. There is always birth and joy. Without one, there isn’t another. So we cry, we comfort, we carry on.

And most importantly- we love our kids no matter how crazy they drive us. The night I found out Anthony died- (I didn’t know this boy, to be clear, but the power of Facebook makes you feel like you know perfect strangers.) I was ready to shake my kids and tell them to please go away to their rooms. Let me be and not bother me. I was exhausted, irritated and completely done for. It was about 10 pm. Then I went on Facebook and saw the tremendous grief a family was feeling over not having their boy to run, jump on the furniture, pester his sister, terrorize the cat and ask his mom a million different questions. And I thought- they would trade places with me in a heartbeat.

So I went upstairs, hugged my children, rubbed their backs while they lay in their beds. Kissed their mussed up, sweaty hair. And blessed them each for being there. I thanked God for this. And went downstairs and cried to James.

I have blog readers in Australia, the UK, Asia and of course, the US. If you’d like to reach out to the Strauss family, share their story or  help make a difference, I’ve included several links. And gosh darn, just hug and squeeze those crazy monkeys in your life!

Gloria’s Angels

Be the Match Foundation

St. Jude’s Hospital

St. Jude’s Fundraising page

Dedicated to Ashley

It’s been two + years my dear friends, the Lefkows, have endured a battery of Leukemia treatments for their little girl, Ashley. I’ve blogged before about cancer since I know many who are fighting cancer, have lost the fight to cancer, or have lost a loved one to cancer. So this is for Ashley and her journey. Normally I would say, “Hey cancer- knock, knock, mother f****r”, but this is about a 6 year old girl so I will keep the swear words to potty talk only.

Hey Cancer, you’re a poopy headed, boogery fart-face that needs to go down the toilet!

This week marks the end of her treatment, the end of daily chemo pills and weekly/monthly  trips to Children’s Hospital to access her port. The end of a lot for her mom and dad and big brother. But the start of something wonderful. Life as it should be.

I remember September of 2009, the text I got from her mom, my good friend Christin- it said, “she has Leukemia”. My knees buckled and my head started to swim. I have no idea what they were going through on that day. I can’t imagine getting that call from the doctor. Immediately they began her treatments, surgeries and making Children’s Hospital in Seattle their reluctant, second home.

There were late night fevers and trips to the ER, oh, on Christmas EVE mind you. There was the ongoing and whole summer of surgery and C. difficile. If you don’t know what it is- Google it. Nasty stuff. There was the steroids. Which was like having a pot smoking teenage wrestler in your house in the middle of the night with the munchies- 2 am nachos, sliders, ramen noodles, scrambled eggs, hash browns and waffles, for a SNACK!

The good thing about something awful happening to your life is that there’s a bunch of people that will come to help you. The Lefkows used all their connections and community that was there for them and turned it into a foundation to help others. Within months after starting treatments at Children’s, they began Ashley’s Team. A non-profit that gets video games, dvd’s, iPods, and other games and toys of entertainment for patients and their families. It’s not research, it’s not ground breaking medicine, but it makes those 72 hours, 12 hours or even 4 hours, that much better for everyone involved with the treatment of a child. Can you imagine what it’s like sitting in a hospital for 8 hours while your child is waiting for test results and you have their siblings with you bored out of their minds? Me neither. And God help me that I never do.

They used their company, Bacon Salt to promote a Bacathalon fundraiser that raised thousands of dollars for Ashley’s Team! It was a crazy bacon-eating contest, tricycle riding obstacle course of madness and Makers Mark, but hey- it worked!

Ashley today with blond, luscious locks, and her new kitty, Payton.

Little girls should be able to play, to wear their hair long and pretty in braids and pigtails if they want to, instead of wearing non-itchy fleece hats on their bald little peach-fuzzed heads.  They should get to go to a playarea or a birthday party without worry of infection.  They shouldn’t  have to worry about the sore on their leg that’s gotten infected. (oh that’s a whole other story!) But there’s millions of families dealing with this very crap. And for that I am truly sorry.

The blessing of Ashley’s story is that all her treatments at Children’s worked with textbook effectiveness. They can gratefully say she is cancer free. Which is like telling Leukemia it’s a poopy-headed fart-face. See ya Mother Fucker. Oh crap- and I was SO NOT going to swear!

But for today, it’s hooray for Ashley and her family of Christin, Dave, and her super awesome brother, Dean (7) to say- We did it.

I love you guys.

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If you want to contribute to Ashley’s Team check out their website www.ashleysteam.org

Families need financial help for uncompensated care, if you’d like to help with this you can donate to www.miraclehouseguild.org

If you’d like to check out Bacon Salt, they’re pretty cool too. www.baconsalt.com