Tuesday, January 8, 2019

Libby's Story

First published in Binah Magazine December 2018

Re-printed with permission

Written by Suri Epstein

Sometimes a miracle can spark an outpouring of love. And sometimes a groundswell of love can help create a miracle.

Little Libby Nagel, her mother Shoni and her grand- mother Jacqui have had both experiences.

Libby was a bubbly 3-year-old toddler with a head full of curls and a smile that charmed everyone she met, living in Sydney, Australia, with her parents and three older brothers. One Thursday afternoon in 2014, her mother Shoni took her to the park. But Libby wasn’t herself and didn’t want to play. She was fine the next day, but on Shabbos she was so lethargic she fell off Shoni’s lap at shul.

The family ate lunch at the house of close friends. The husband, a pediatrician, observed Libby and by the next day, urged Shoni to take her for an ultrasound on Monday. When the medical staff saw the results of the ultra- sound, the room went quiet.  The head of the department sat them down and informed Shoni and her husband Josh that their life was about to change forever.

“He told us that Libby had stage-4 neuroblastoma, a very aggressive and unpredictable cancer,” Shoni says. “He sent us directly to the Emergency Department of Sydney Children’s Hospital. That was the day our world turned upside down.”

Eight thousand miles away in Ramat Beit Shemesh, when Shoni’s mother, Jacqui Taub, heard the news,  she felt as though her life were ending too. “When I found out about the diagnosis my world fell apart,” she says. “I just screamed. Shoni is my youngest and this was her youngest. I was terrified that we were going to lose my baby’s baby.”

A Grandmother's Love

Jacqui got on a plane the next day, to spend the next two months with her daughter and granddaughter. That was no easy matter. Jacqui’s health was poor; she had undergone three hip replacement surgeries and a spinal fusion, had advanced arthritis, and lives in constant, debilitating pain. The 20-hour flight was physically agonizing for her. She also had the added stress of leaving a sick husband behind in Eretz Yisrael; he had been diagnosed with incurable cancer six years ago.

“It was so hard for me to see Shoni having to go through this and not be able to do something for my little girl,” Jacqui says.

Libby was immediately admitted to the hospital and things started moving at a breakneck speed. “They did surgery within the week,” Shoni explains.

For her mother Jacqui, watching helplessly as the nightmare unfolded, there was a sense of awe. “I was amazed with my daughter, how incredibly strong she was. I couldn’t believe that my baby was handling this tragedy the way she was.” “In that situation there’s no time for contemplation,”

Shoni says. “It’s just what you do.”

Over the next 15 months, the toddler underwent eight rounds of chemotherapy, three weeks of radiation, a bone-marrow transplant, surgery, and five months of immunotherapy.  Jacqui traveled between Israel and Australia four times during the first year.

“That child of mine, Shoni, she had such strength,” Jacqui says. “She had a smile on her face. She started baking challos, speaking to women’s groups, and was very upbeat. She still managed to laugh.”

Jacqui wrote cathartic stories about her beloved grandchild, “Libbylicious,” describing how her beautiful curls were like petals that would fall out, but grow back again.

Libby’s treatment continued. The results were nothing short of miraculous. “She responded amazingly to treatment,” Shoni says. “She was doing so well.”

But then everything changed overnight.  Again.  Shoni had taken Libby for her end-of-treatment scan. She was driving home when the doctor called her with shocking news. “You’re not going to believe this,” he told her. “A tumor came back to the front of her brain.” Shoni literally was sick on the side of the road.

With neuroblastoma there’s a 50% chance of relapse in children, which is a devastatingly high number.  But out of that, only 4% contract something called a CNS relapse, which is what Libby had. “The only thing worse than a diagnosis is finding out that your child relapsed,” Shoni says. “You already went through it once, so you know what you’re in for.”

Shoni and Josh were dumbfounded.  Jacqui was shattered. “I have no words to express that helplessness you feel as a mother and grandmother,” she says.

The hospital informed the Nagels that there was nothing more to do for Libby. “The oncologist said, ‘Many oncologists are going to tell you just to enjoy the rest of her life.’” But Shoni adamantly refused to accept defeat.  Her husband Josh was sponsored for a job in the US. which opened up life-saving treatment opportunities for Libby. The family moved to the U.S. and Libby began aggressive treatment at New York’s Memorial Sloan Kettering Cancer Center, the only hospital in the world that offered hope for a cure for this rare condition.

“We landed in the middle of the winter, the likes of which we had never experienced before,” Shoni says with a laugh. “I literally knew one person in all of New York.”

But a week after the Nagels’ oldest son’s bar mitzvah — a year into Libby’s relapse treatment — her platelets (the cell that causes blood to clot) dropped from a normal level of 150,000 to 400,000... to 0. It wasn’t clear what the cause was, but it seemed that she’d grown allergic to donor platelets.

“This was the start of a year from gehinnom,” Shoni says. It was a period of platelet transfusions on an almost daily basis, of endless surgeries and invasive procedures. The situation was so dire that they had to suspend treatment for the neuroblastoma. And in the middle of that, her mother-in-law passed away.

The situation has also been very hard on Libby’s siblings. “Libby’s treatment was traumatic on her brothers,” Shoni says. “Even today they remember our absence and crave our attention and worry incessantly about their baby sister.” 
Jacqui with Libby and two of her siblings

And the agony that Jacqui felt for her child and grandchild was just another chapter in an already hard life. Her mother had abandoned the family when Jacqui was 2 years old. At the age of 8, she was sent to a Christian boarding school for two years. She dropped out of high school at the age of 16, thanks to an undiagnosed case of Attention Deficit Disorder. Devastated by unresolved childhood trauma, she endured decades of panic attacks as well as a broken marriage. 

“My life was always lived by the skin of my teeth,” Jacqui says. “But fear’s never been part of my world. I’m not frightened to fail.” 

When she was in her 30s, she began to find herself creatively. “Nobody knew that I had any talent at all,” she explains. She became a published poet in Australia, and wrote and illustrated six children’s books. Then she had a sudden image in her head — a picture of a little man made from clay wearing a tallis and a kippah. 
Photo Chana Zuber Flicker

“I had no experience with ceramics,” she says. She bought clay and spent three months crafting her first piece. “I’m self-taught with Hashem’s help,” she says. 

Jacqui moved to Eretz Yisrael in 1997 and continued developing her talents in her tiny Mercaz Klitah (Absorption Center) room in Raanana. “I shlepped the samples back and forth across a huge field to a girl who had a kiln and who fired them for me,” she says. 

When she’d amassed a suitcase full of samples, she took them to an upscale store in Jerusalem’s Old City. The owner immediately purchased most of her items. She continued creating her ceramics and growing her business for the next few decades. 

It was many years later, as Jacqui watched Libby’s horrific situation unfold, that she felt she’d lost her drive. But then she was struck by inspiration. She decided that she was going to make a magnificent ceramic chess set. The pieces would feature different groups of Chassidim telling a story. It would be an important distraction for her from the difficult time they were going through, as well as a means to fund the frequent trips to the U.S. 

“My mom had felt so helpless and frustrated about not living near us,” Shoni says. “She wanted to be proactive, so she did the thing she’s brilliant at.” 

Photo Chana Zuber Flicker

The chess project took a year and a half to complete, and proved to be a life-saving distraction from her emotional and physical pain. Even though her body is wracked with arthritis and she is no longer mobile, she says that when she’s working, she doesn’t feel pain. “I just strap up my hands and my fingers work,” she says. 

“It’s a miracle. I understand why Hashem has given this gift to me. He wanted to help me through these horrible times. But I am convinced that there are so many people out there with talents from Hashem, but they don’t know it. You can be a success doing anything you want.” 

She hoped selling the chess set would fund her flights to the U.S., but she was three-quarters of the way from completing her masterpiece when she was struck by another insight. She realized that the precious chess set was meant to be sold for tzedakah as a zechus for Libby’s recovery. 

“The chess set didn’t belong to me,” she says. 

“My mother is an unbelievable neshamah,” Shoni says. “She was doing something in Libby’s merit, something in return for all the chessed that was done for us.” 

Shoni has been overwhelmed by the amount of chessed that was done for her family in their Five Towns community and across New York. Organizations, schools, and individuals have selflessly offered financial, emotional and medical support. 

“My child is alive because of Chai Lifeline, without  which we would not have been able to navigate a new country and relocation,” Shoni says. “They give to Libby and to the boys and support us in so many ways.” 

While Jacqui worked on the chess set, a friend of a friend heard about it and asked to see it when it was done. She didn’t give his interest any thought. But when she finally completed the set, she had no idea how she would find a buyer. She was at a simchah and this man approached her and asked her if she’d finished the chess set. She sent him photos of the completed item, and he said he wanted it. He purchased the set for a substantial amount of money — and the entire profit went to tzedakah in Libby’s zechus. 

So how is Libby doing? “Libby is a miracle,” Shoni says. “Medically she shouldn’t be walking around. The hospital staff is floored by her. G-d really works in mysterious ways. She’s here because of all of the Tehillim groups and chessed done in her name. There’s no other explanation — she’s miraculous.” Bli ayin hara, she’s gone over two months without a transfusion. Even more amazingly, she still hasn’t completed her cancer treatment for the relapse, but has been cancer-free for two years. “No children have survived without treating CNS; she has only had partial treatment, but is still here.” 

Now six and a half years old, Libby is an upbeat and carefree child who brings joy to everyone around her. No matter how painful her treatments, she bounces back to her cheery self instantly. She’s also a gifted artist like her grandmother. “She’s amazing,” Shoni says. “Thank G-d we’re in a good place at the moment.” “That little girl has taught me so much,” Jacqui says. “She’s given me strength to go on. She’s a source of encouragement.” 

Throughout their ordeal, the family has never wavered in their belief. “When I daven, I say a prayer I composed asking Hashem to give Shoni the strength and the courage to do what she has to do, and keep her family strong, and keep her emunah,” Jacqui says. “And Hashem is answering her tefillos because that’s what she’s doing.” 

As for Jacqui? “I’m blessed with so many blessings. My husband is doing okay. He’s alive. He has a certain quality to his life. My family is my tafkid.” The bond between the three generations is a powerful one that’s sustained all of them. “I’m incredibly proud of my mom,” Shoni says. “She’s wonderful.” “Let me tell you that Shoni is amazing. She’s one of the most amazing people I know,” Jacqui says with a laugh. “And my other kids, of course.”


angela said...

Baruch HaShem...such an encouraging story... there are so so many people ...right now...going thru tremendous struggles, and this story of never give up and keep on going is so much needed to be heard today...

Thank you for posting it... and thank you Siri Epstein for telling this incredible story of Hope...

Batya said...

wow Baruch Hashem

Neshama said...

What a moving story. Thank you for posting this.

Anonymous said...

Truly moving and inspiring. May H' bless this beautiful child with a speedy Refuah Shleimah! Wishing her and all the Yiddishe neshamalach long and healthy lives and to give much nachas to their parents and families. Please H', let's only hear and know of besurot tovot!

Rachel said...

And sometimes, stories like this are just horribly painful to hear. My 14 year old gorgeous tzaddekes girl was diagnosed with a rare cancer we all thought she'd beat until the very moment she succumbed at the age of 18. We tried everything, had thousands of people davening for her and the answer was "no." And more often than not, the answer is "no." Which leaves me wondering how to react in happy ending cases when the answer is "yes." Of course I am happy for the family. But it feels a bit like an abandonment. I pray that Moshiach comes soon because I need answers and can't take the pain anymore.

Devorah said...

So sorry to hear that Rachel, so many don't make it I know. I hope this story did not bring you any more pain.

LondonMale said...

Just incredible.
The tests we are put through.
Life is a roller coaster
Who knows the ways of Hashem.

Anonymous said...

The worst part is that these days, children are being put to the test more than ever. These diseases have multiplied to abnormal numbers. More illnesses and more medications that can be detrimental too.
May H' have mercy and send a refuah shleimah to all Yisrael and good peoples of the earth. Only when Moshiach comes will there be the perfect world. So sorry Rachel - things are moving fast and there will be techiyat hameisim and reunification with our loved ones will be the reality. Amen!