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Donate for Zahava Block & Friends!

Adina Block | Lincolnwood , IL
I donated to my TDS campaign.

Adina Block

Four years ago my whole world changed. Four years ago, I was just a mom with three little kids. Busy as ever; just like you. Routine dinners, routine bubble baths, routine playdates and routine yearly doctor checkups- you know the drill. However, what was supposed to be a "routine" tonsillectomy surgery for "extremely large tonsils” in my oldest daughter who was 6 years old at the time, ended in NO routine way at all.

When the ENT came out to say that the surgery went great, he mentioned that my daughter had stubbed her toe on the metal wheel of the hospital bed while climbing into it pre-op and during the surgery her foot had swelled to three times its normal size. He was worried she might have broken a few toes.

A few weeks later, many bowls of mint chocolate chip ice cream and many episodes of bubble guppies later, when the pain meds from the tonsillectomy wore off, Zahava was ready to go back to school. The next morning she was putting on her shoes and practically broke the windows in the house with her ear piercing screams of “my shoe won't fit on”. When I quizzically asked what she meant and she showed me her extremly large foot which I had completely forgotten about, I was shocked at its size and color. At that point, she was obviously NOT going to school and we headed straight for the pediatrician’s office.

The pediatrician, obviously, sent us right away to have it X-rayed. At the hospital, the radiologist wouldn’t even let us leave before telling us that it wasn’t broken bones, and that in fact, it was likely a tumor.

The next few months of our life went by in a flash as we were sent on a wild goose chase from doctor to doctor being told one terrible piece of news after the next about why Zahava’s foot looked the way it did, but no one had any idea how to treat it or what to do next. The worst part, was that with each passing appointment her foot was growing bigger and more painful and by about three months post her tonsillectomy she couldn’t wear ANY shoes, no matter how many sizes bigger and had to be in a full-time walking cast. However, even that was painful for long periods of time.

During our doctor merry-go-round we finally made it to one of the head oncologists in Northwestern University who took a significant about of time and patience with Zahava and really took a good look at not only her X-rays but made sure to get clearer MRI’s and ultrasounds. He finally made a proper diagnosis and gave us some clarity; that the reason her foot was swelling wasn’t a tumor at all and instead was a completely different diagnosis called an AVM, Arteriovenous Malformation. A condition that even my mom who had been a nurse for over 30 years had never heard of.

In essence, her veins and arteries were intertwined inside her foot. Veins push blood and Arteries pull blood; Zahavas were both pulling the blood from her heart down into her foot causing her whole foot to swell to disproportionate sizes, become very uncomfortable and dangerous for Zahava bodily blood flow. The scariest part was that we didn't know if there were more AVM's hiding anywhere else in Zahavas body or if they were only in her foot. Especially since the condition usually presents in the brain.

The oncologist then referred us to an AVM specialist at Lurie Children’s Medical Center in Chicago. Our new Interventional Radiologist explained that was no "cure" for AVM’s and from here on out it would be a lifelong journey for Zahava, something she was born with and something she will continue to live with for the rest of her life. He even suggested that there might even be a point where we consider amputation if the pain was too great. Our world was honestly shattered.

Zahava spent the next 3 years of her life having embolization surgeries almost every 6-8 weeks. She also spent many months either on crutches or in a wheel chair and many months in pain management clinics or on morphine drips.

Finally, after almost four years of not being able to attend school like a regular kid, living between doctor appointments, surgeries, post-op check-ups, countless IV needles, dozens of flavored Oxygen masks, bloodwork, more Covid tests than we can possibly count, multiple open ulcers on her foot and mulling over the idea of amputation more times than we care to admit, Zahava has finally been admitted into a brand-new clinical trial for AVM patients that came to America in June 2021. A daily oral medication that was originally used for transplant patients that has significantly shrunk the size of her foot and has completely eliminated the need for her surgeries and even has allowed her to begin wearing orthopedic shoes and attend school regularly again.

Its literally a whole new life for Zahava. Although CM-AVM, the genetic marker that we now know Zahava has for AVM’s, is a life-long battle of PET scans and making sure she takes her medication on time every day, and being on a medication with unfortunate side effects for an indefinite amount of time, she can finally begin to live life like a “normal” kid.

A BIG part of the normalcy that Zahava has had over the past three years has been in thanks to Chai lifeline. The family we never wanted to be a part of, but the family we could now never imagine living without. The big sisters they’ve paired her up with. The hospital bags she received before each procedure. The endless food our family was sent. The mom support I receive daily. The annual Chanukah and Purim parties. The yearly carnivals, get togethers, outings and monthly events for the chai lifeline warriors and their siblings. And most of all, Camp Simcha. The two indescribable weeks Zahava experienced at Camp Simcha Special Summer 2021, returning Summer 2022. Her two weeks at camp was enough to propel her well into the school year with positivity and hopefulness about any medical or other challenge she needed or will need to get through.

Seeing that your child can accomplish even the toughest of challenges, as a mother is one of the greatest gifts to watch and nurture and in turn only makes me want to work just as hard to overcome and defeat my own fears. So now, it is my turn to give a gift to my daughter. To all my children. To myself. My turn to show them that I can accomplish. I can overcome fears. I can climb the mountain when the going gets tough. I can and I will! Tour De Simcha 2022!

So no, my life is not routine any more, not in the least bit. We’ve added 2 more kids to the family, twins, a boy and a girl who are now 22 months old. We moved to a new house in a new neighborhood where we knew almost no one, since Zahava was first diagnosed in order to help Zahava succeed in a better school district. We dish out daily medicine like a camp infirmary every day to Zahava but we laugh. We cry. And we do everything in between. Our family isn't perfect. Our family isn't routine. And we wouldn’t have it any other way.
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This summer, I am excited to take part in Tour de Simcha, an exhilarating 65-mile cycling event benefiting the children and families of Chai Lifeline. Every mile I ride and every dollar I raise will help support more than two-dozen essential programs for more than 5,900 children and families confronting pediatric illness, crisis, and loss. These services include counseling and case management, meals delivered to hospitals and homes, transportation to medical appointments, emergency financial assistance, insurance advocacy, i-Shine afterschool programming, Big Brothers/Sisters, Project Chai crisis intervention, and Camp Simcha and Camp Simcha Special, Chai Lifeline’s flagship medically-supervised summer programs. Life for a child with cancer, disability, or other serious illness is grueling. From the moment of diagnosis, Chai Lifeline’s dedicated staff and volunteers are there to provide joy, hope, and unparalleled care throughout the turbulent medical journey. My objective is to raise $2,500, and I hope you will help me reach this goal. All donations are 100% tax-deductible. Please contribute generously to this important cause by clicking on the donate button now. On behalf of the children of Chai Lifeline, thank you for your support.

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Zahava's wrote her own version of her story which will be published in this book!

Comments

$4,875
raised of $5,000 goal
 

Donations

$500.00
1. Sonia Kashuk
$250.00
2. David Hartman
Good luck!!
$200.00
3. Emily Fishman
❤️
$200.00
4. Anonymous
May Hashem send you a complete refuah
$180.00
5. Anonymous
$180.00
6. Chany Kaplan
To such a great friend! And an amazing mom!! Keep strong! We love you!

Chai Lifeline Warrior

Libby

49 donors