Tali's Story

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Tal (affectionately known to many as “Tali”) came into our lives on June 10, 2003. She arrived twenty-seven minutes behind her twin brother Noam and two and a half years behind her older brother Amir. After a relatively normal, if somewhat precocious three years, during the summer of 2006 she began having spells in which she would throw up repeatedly for several days and then seemingly recover as any child would from a simple virus.

However, in late October 2006, not only was she throwing up, she also was extremely lethargic. She was taken to North York General Hospital, where she was initially diagnosed as suffering from dehydration and was given intravenous fluids. Tal’s condition continued to worsen at night and eventually she was rushed by ambulance to The Hospital for Sick Children.

At Sick Kids, a CT scan quickly determined that she had a large mass in her brain. This devastating news became our new reality. Our Tali had a brain tumour.



A subsequent MRI scan revealed to the surgical team at Sick Kids that the mass was quite large and needed to be removed. The tumour was preventing the normal draining of cerebral fluid in Tal’s brain. Five days after Tal arrived at Sick Kids she underwent surgery to remove the tumour. The surgery, performed by Dr. Rutka and his neurosurgery team, lasted about four hours and went extremely well.

To our amazement, Tal was already singing her ABC’s in the recovery room and we were relieved to know that she showed no signs of any brain damage.

  A biopsy revealed that Tali had a tumour known as ATRT (atypical teratoid rhabdoid tumour), an extremely rare and aggressive form of cancer. 



Treatment

Prior to beginning chemotherapy, Tali underwent multiple surgeries aimed at stabilizing her very serious condition in order to prepare her for treatment. Doctors warned us that the treatment would cause Tali to feel extremely ill, and added that despite aggressive treatment, there remained a significant chance of a relapse within the first year.

Tali's treatment consisted of 6 cycles of chemotherapy and was implemented in two phases.  The first phase involved three cycles of strong chemotherapy carried out over a three-month period, during which time (with some exceptions) she remained in the hospital.  We were told to keep the number of visitors to a minimum, since the chemotherapy severely compromises the immune system.  An MRI at the end of the first treatment phase provided us with much needed hope and encouragement, as there appeared to be less evidence of the original tumour. 

The second phase involved another three cycles of chemotherapy.  Far more intense than the first round of treatments, the second treatment program necessitated complete isolation for Tal.  Her immune system would become dangerously compromised and extremely susceptible to infection.  We - her parents - were, for the most part, the only familiar faces allowed in her room. Hospital personnel were allowed in briefly but they had to follow a stringent protocol prior to entering the room, in order to prevent the spread of infection.

After each of these three chemotherapy cycles, Tali underwent a stem cell transplant, using her own stem cells that had been harvested earlier on.  The purpose of the stem cell transplant was to help rebuild Tali's immune system.

Her recovery after each cycle was amazing.  Tali was allowed to go home for a few days.  In mid December Tali finished her cycle and her blood count was at level that allowed her to go home on the day off her Dad’s birthday.  Tali was allowed to go home and celebrate with her family.  On February she amazed us by recovering after her heavy dose cycle just on the day of her mom’s birthday.  And again Tali went home to celebrate with her family.  Tali stayed home again for a week celebrating her brother Amir 3 days later.  Her last cycle was getting close to the date of Passover and we were not sure if Tali will make it home for Passover dinner.  Tali did not disappoint us again as her count Shot up on the eve of Passover.  It was the end of her last cycle and what a prize was waiting for all for us.  Tali was discharged from the hospital after completing her 6 cycle and got to go home and spend the Passover with her family. 

Tali's recovery after each cycle was so good that, on a number of occasions, she was allowed to go home for a few days. In mid December, Tali recovered enough after her chemotherapy cycle to allow her to go home on the day of her Dad's birthday.  

In February she amazed us by recovering after one of her high dose cycles just on the day of her mom's birthday. That time, she managed to stay home for a week and was able to celebrate her brother Amir's birthday as well. Her last cycle was close enough to Passover that we had real doubts as to whether she'd be well enough to come home for the holiday.

Once again, her spirit and determination triumphed and her counts shot up just in time to allow her to join the family for the Passover seder.

While Tali was in isolation, we were fortunate enough to be able to set up a computer with a webcam, so that Tali could communicate with some of the important people in her life – particularly her brothers!

Tali found a way to make the best of her difficult circumstances.  She demonstrated strength and determination, and remained quite a happy little girl.

Coming Home

Having spent over five months in the hospital, Tali was finally discharged and was able to come home on March 30, 2007.  She continued to be followed on an outpatient basis at SickKids, and received additional medical attention at home. 

From April to early August, Tali thrived, surpassing all expectations.

Another MRI in May yielded encouraging results. She was doing so well that we dared to hope that she might be that one child who could perhaps beat the odds. She gained weight, sporting chubby little legs that showed increasing agility and strength.  She would grin when her Dad called her his “chunky monkey”.  Her hair began to grow back, and we cautiously considering the possibility of having Tali return to school in the Fall.

Relapse

Tragically, in early August 2007, Tali began to experience stomach and neck pain, and we took her back to the hospital for investigation.  A CT scan and subsequent MRI confirmed the worst of all of our fears:  Tali had suffered a severe relapse. The degree of spread was very significant and there were no further treatment options available.  Grief-stricken and in a state of shock and disbelief, we brought her home to be with her loved ones.  We did everything in our power to provide Tali with the best possible care and to minimize her suffering. We stayed at her side at all times.  Amir and Noam helped too… keeping her company, making her smile or laugh, giving her lots of hugs and kisses, helping her to get comfortable, and being incredibly patient and understanding. 

Tali’s condition deteriorated rapidly, and just three weeks later she slipped away peacefully and quietly, with us (her heartbroken mom and dad) by her side.

Tali's Legacy

Having to manage such indescribable suffering at such a young age, Tali revealed herself as a most exceptional, unique, and inspiring human being.  Her incredible, unwavering spirit provided us with the energy and strength we needed to help her get through each day. Tali's ability to inspire those around her was astounding, as she demonstrated a deep level of insight, wisdom, and intelligence far beyond her years.  She quickly learned to adapt and overcome her fear of daily medical procedures. As she conquered each procedure, she was rewarded with bravery beads, the vast numbers of which were a testament to her courage. She displayed her collection with much pride and joy.  She became so accustomed to the constant nursing procedures that she began to take an active role, insisting on doing as much as she could on her own (e.g. taking medication or taking her temperature and blood pressure).

Despite her long absence from home and her separation from family and friends, Tali seldom complained about having to stay at the hospital, or about returning to the hospital after spending time at home. 

Tali - Our Little Girl 

Notwithstanding her illness, Tali was a typical little girl who, when she was able, enjoyed the same activities as any other three / four year old.  It gave us tremendous joy to watch her play.  She loved puzzles and approached the task of completing them in a systematic manner: first the corners, then the sides, and lastly the middle, excitedly displaying the finished product to anyone who would come into the room.

She enthusiastically collected the latest craze (called "Peek-a-Poohs") and delighted in spending time counting them or deciding which to give to her brothers.  One of her favourite activities was making gifts to send home with visitors.  She would string beads into bracelets or necklaces, or work at arts and crafts.

The lucky recipients could be seen leaving the hospital clutching one of Tali's masterpieces, shirts often glinting with an array of stickers which Tali, in her wise and adult-like way, had awarded them. 

Tali always loved company.  She engaged actively in the therapeutic activities provided by the hospital, enjoying visits by the colourful clown "Mary Sunshine" or  singing along with the music therapist.  Tali loved to sing, and she knew many songs by heart. She especially enjoyed singing together with us and with her grandparents.  Over the course of her hospital stay Tali became a computer whiz, often content to entertain herself with her collection of educational games, particularly those featuring her all-time favourite character, Dora the Explorer, whose pictures, videos, books, music and dolls spilled out of every nook and cranny in her hospital room. 

She quickly learned to read and write simple names and words, patiently writing little notes to send home for her brothers whom she adored, and whose visits, when allowed, were the highlight of her day. 

Tali had a great sense of humour and really enjoyed being silly. We would joke with her, asking if she had taken a "silly pill".  She liked making up funny nicknames for others or singing silly versions of familiar songs.  As people left her room, she’d say "See you later, Alligator" and wait for them to answer with "In a while, Crocodile".  She liked to express agreement in rhyme too, grinning as she said: "Okey Dokey Artichokee!", or "As you wish, Jellyfish!".

When Tali was discharged and came home, she was greeted with excitement and wonder by her brothers.  Our sons’ lives had been turned upside down, having been forced to adapt to very few brief visits with their sister in her little hospital room.  Bounding into the house to greet Tali, they did not care that she had no hair or eyebrows or eyelashes...they did not care that she had a central line and a feeding tube protruding from her little body.  They cared only that their beloved Tali was back home.

Only days after coming home, Tali rode half a kilometer on her tricycle. She teased her brother Noam as he tried to catch up to her: "You can’t catch me, you can’t catch me!"

We had just over four wonderful months with Tali until her relapse.  As she gradually became much stronger, she resumed a more normal life despite continued medical procedures, which she took in her stride. Tali loved the park, where she would speed down the slide or swing high up in the air, often laughing out loud as she forgot all but the joy of the moment.  She loved to play in the sand, ride her bike or go for walks around the neighbourhood. She played soccer, blew bubbles, drew chalk pictures on the sidewalk and played hopscotch. She particularly loved to swim, and after her feeding tube and central line were removed at the end of June, she spent a lot of time in the pool or at the lake.  She embraced life just like any other four year old.

We hold on tightly to these precious memories and derive great comfort from knowing that during the long months of treatment and aftercare, Tali seized the opportunity, whenever possible, to be a child like any other.   

From Tali we learned to view the world in a different way
... to focus on what is important in life ... to find joy amidst
adversity.   Through her words and actions, our little girl lit up the
world, exuding kindness, gentleness and deep affection
 for those fortunate enough to be around her.

May Tali's strength and dignity continue to touch and inspire
 many more people for years to come.

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