Follow on Bloglovin>
Ebates Coupons and Cash Back

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/

I know why the holidays might suck for some of you.

We are supposed to be happy. Yeah like in Disneyland, it’s supposed to be so frickin’ fantastic. I’m tired, my kids are driving me crazy, and I can’t buy anymore of this crap. No. We’re not in Disneyland. It’s Christmas.

But there’s more to this holiday being depressing than just the nonstop Macys commercials, drippy “Christmas in the Northwest” song on the radio, getting all the crap done that everyone expects of you and if you don’t do it all, you feel less of a woman- depression.

No, I’m talking about the pain in your heart and the hole in your gut from knowing this holiday is the first since losing a loved one. Or maybe it’s the second or third since they’ve passed. How do you fake happy? How are you supposed to be cheerful and live through the four weeks (make that eight weeks thanks to the annoying mass marketing our commercial society has created…) of holiday hoo-ha?

But maybe, just maybe going through the ornaments, pulling out the photos, getting out the stocking that was theirs is like pulling off a band-aid. Painful at first, but better afterwards. Why is it the ones we love hang on through the holidays and then seem to pass in January? It seems those I know that have died and usually from cancer, have hung on to Christmas and then had to let go come January or soon after. Hanging on to spend their last holiday with family.  But no matter what time of year you’ve lost a loved one, the holidays seem to lurk and you might resent them instead of embrace them.

My friend Julie who passed away almost 10 years ago, would bake the most amazing Christmas cookies. Every Christmas I would wait for her goody bag of delicousness. That was her gift to her friends. Even when she was having chemo or recovering from a surgery, she made those cookies. Her last Christmas before she died in January, she made those cookies. I didn’t get to see her on Christmas day at my parents like we had done in years past. She was too weak.  I swung by her apartment the day after Christmas and her boyfriend gave them to me. She was sleeping he said and needed her rest. I wasn’t aware how close she was to death. I took that bag of cookies home. Inside was also a tea tin of Murchies tea from Canada. Our favorite. I had one of her biscotti and made a cup of tea. I had a cookie a day or so. Savoring each one. The powdered sugar on the wedding balls, the jam inside the cutouts, the chocolate ganache between the butter cookies…I couldn’t believe that she made them despite being so sick.

When I got the call she died on January 13, I still had cookies in the bag in my pantry. I stopped eating them. I just left them there on the shelf. I would see the bag and her handwritten note that was attached with a raffia ribbon every time I opened the pantry door. I didn’t dare move it or eat any more of those cookies. As if it was a sacred shrine to her. That the cookies were my last bit of her I had.  A whole year went by and I had those cookies in my pantry. And then one day, I thought, Julie would be so pissed if she knew I wasted those cookies!! Not only was she a stickler for neatness, she wouldn’t let anything go to waste. She had a very sophisticated palette and she kind of scared me, because everything she did was perfect. Every time she cooked it was like a Bon Appetit magazine spread. She insisted on quality and taste, never cutting corners or falling into the traps of ‘boxed’ or ‘name brands’. Heaven forbid I open a box of Kraft!!

So I took the bag and emptied the hard and crumbly cookie remains in the garbage. I apologized to the spirit of Julie, wherever she was. I kept the gift bag and the note with her handwriting among my keepsakes of cards and notes from loved ones and I drank the tea from the tin and saved it to keep more loose tea in it still today. I knew that she would’ve thought it silly not to actually EAT the cookies she baked, but she would be glad that I’m at least using the tea tin.

The pain of a friend passing is not that of a son, daughter, parent or spouse even. I won’t even pretend I know your pain.  Sometimes your sadness puts you in that dark hole of wishing everyone else wasn’t so damn happy. But then I think there’s a purpose to the world that keeps turning. With each year, the happiness can start to outshadow the sadness. Like a moon waxing from new to full. There’s a little sliver of brightness coming around with each season. It starts with darkness and ends with a ball of light.

I hope that any of you facing a painful Christmas, that first or several after, can see the light that comes around. That knows even though you are aching inside, it’s okay to be happy sometimes. It’s okay to laugh at Elf, to sing along to Perry Como or enjoy the lights on the neighbors house, to get a little tipsy at the cocktail party with friends. Because those that we miss, would want us to enjoy what probably gave them the most happiness. And for the rest of us, hopefully we can stop and appreciate the joys of the season and not just dwell on the craziness and stress.