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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/

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Comments

  1. Becca, thanks for the whipsawing emotional roller coaster.

    After yesterday’s post I vowed to read your blog everyday because it made me laugh so much. After today, I’m afraid to ever read it again. I hardly had the courage to read it. I can’t imagine the courage it took for Reshma to write it.

    As a 51 year old, I’m still surprised that I’m learning life’s lessons from a 5 year old. It’s a good list, but a tough list to live up to.

    I just want to go home and hug my kids now. But that would mean waiting at home for them for hours. I’m having a real hard time right now with rule #1.

  2. Yes, thank you Reshma for sharing your beautiful daughter’s battle with an awful disease. So many people now can learn from her wisdom and her story, and her wonderful stance on life.

  3. As Donna’s Mama, I am sitting here crying, crying, crying. I think what I believe is that so many of the children I have known or come to know with cancer are extraordinary, wise beyond their years,old souls. The lessons Siona teaches us are so very similar to the lessons my Donna taught us, too. I am so proud of you, Frugulista, for sharing the story of pediatric cancer with your readers. We need hundreds more just like you. All my love to Reshma and her family. Sheila/Donna’s Mama/Mary Tyler Mom

  4. I feel grateful to have come to know of Siona through this blog, even though I’m bawling after reading it. Reshma, thank you so much for writing this, and for including “Siona’s Life Lessons” with it. The life lessons are ones I will reflect on for a long to come.

    One line in particular fills me takes away some of the fear of death I’ve struggled with since my mom died a couple of years ago: The night before she passed she told her Dad, ‘Daddy, I’m flying free!’

    If Siona knew, if she could feel the change happening and was not afraid, then I am hopeful for what might follow. Usually I don’t know what to think or feel about death, but this . . . imagining flying free, I feel I have been blessed to see that gateway through your daughter’s eyes, although I deeply regret that she had call to describe it.

    Thank you again for sharing this.

  5. Uta says:

    Reshma, thank you sharing your family’s story of your dearest Siona.
    Because of Rebecca, I was able to follow along as you lived through this horror of Siona’s cancer. When you left for St. Jude’s we were thankful for the new hope and felt defeated when you returned, realizing with cancer there are no guarantees.
    Little Siona has affected more lives than you will ever know about. Especially as Sohil recorded Siona’s wisdoms for all of us to learn from. I will certainly keep them in my heart.
    I pray for the well being of your family and remember you with much admiration.
    Siona’s bright light will be shining on!

  6. ghfool says:

    That made me cry. God bless her and her family and all others suffering from disease!

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