This is my son, Shir

In the picture on the left, he is one year and 3 months old, a healthy, beautiful baby boy that made us so happy.

On the picture on the right, he was 2 years and 3 months, 2 weeks before he died.

I apologize in advance as this is not an easy story, it’s emotional, but it is so important to be told.

This is something no child, no parent and no family should ever have to go through.

Shirkush was born in the summer, in late August. A magic boy who from birth has connected and touched every person he has met. Little brother to Or and Gil.

Shir was a special and amazing boy. He was always happy, funny, playful, developed and so smart.

Shir loved to build towers in Lego and magnets, play with cars, knead dough, draw, eat and most liked to watch Cocomelon.

Our story starts when Shir was one year old, he started to have constant diarrhea. As a proud mother of 3 kids at that point, diarrhea is not too exciting, and you definitely don’t think that would lead to cancer. Especially when Shir was the happiest, active, “healthy” kid.

But still, I was running between one doctor to another to understand why the diarrhea won’t stop.

So, we eliminated allergies, virus, teeth etc. and still couldn’t understand why Shir is with constant diarrhea.

After a month, blood works showed high value (LDH), but a well-known professor told us the tests are all good and referred us to a non-urgent gastroscopy test. Meanwhile, Shir’s LDH level kept on rising.

It took the doctors 3 months to diagnose the source, and only after the fifth doctor saw Shir, he connected the LDH level and diarrhea, and we were sent to a simple ultrasound. Revealing the worst thing ever – Shir has cancer.

Even I could see it with my own eyes. 11 over 5 centimeters of a solid tumor in his little belly. There was no need to explain to me how wrong it is and shouldn’t be there.

Ultrasound, the most cheap and simple test, paved our way to the hospital, for further investigation, biopsy, etc.

 

Looking at Shir, you couldn’t tell what is going on in his little body. The kid was happy, well developed, going to kindergarten, and friendly - everything seemed “normal”. Overnight, we are in a nightmare.

In a week of every day bad news, we always had 2 options – one is bad, but the other is even worse, and we always end up with the worse.

It started with diagnosed cancer, finding out there is an aggressive gene, and then learning the cancer is already in Shir’s lungs and in other locations in his body. And all of that time we are being told how rare Shir’s case is. Which is not the preferred place to be rare in- we learned in time that it was a death sentence.

 

So, we started taking action, and started treatments which did not impress the cancer. So after 4 treatments, we stopped following the official protocol and he underwent surgery to get that tumor our of Shir’s little belly.

 

We switched to a second line of treatments, a much more aggressive one, led by a famous hospital in Philadelphia, including a combination of chemotherapy, antibodies, and biological treatments. And it also did not impress Shir’s cancer.

After five months of treatments in Israel, which didn’t affect Shir’s cancer, we left with our entire family to New York.

The hospital in New York is well known for its Neuroblastoma treatments, promotes research and clinical trials, which we hoped with our full heart that Shir could be eligible for in case conventional treatments wouldn’t work.

 

But right from the start, even before we started treatments in New York, in the very first scans, we found out that the cancer is out of control and very significant in Shir’s lungs. It wasn’t only spots now, but big masses. A genuine question mark was raised whether to go back to Israel even before we started.

Determined, we decided to start treatments and hope for the best. And it worked - the spread stopped.

Five hard and intensive treatments in New York managed to reduce the masses by 50%. Shir continued being amazing as usual and was so brave facing every obstacle. His happiness and constant smile kept us sane, strong, and focused.

But after the sixth treatment, at the end of October 2021, control was lost again, and we were sent home to Israel, when the doctor explained he had nothing more to offer Shir.

 

We decided it is not yet the time to go back home. So, we found ourselves in Philadelphia, where an amazing doctor offered a unique treatment. One which Shir will have to go through while he is sedated and intubated. There is HOPE.

 

The treatment was very hard, unlike any other treatment Shir had before. He was sedated and intubated for a few days, and for the first time you could tell on Shir that he was tired and having a hard time recovering. But right afterwards, for almost 3 weeks, we were very optimistic – Shir recovered, he was active and happy, and images showed significant improvements, where part of his spots had disappeared!

Shir, with his perfect charm, managed to make the two best hospitals in the US, work together and do everything for his very best, with no ego, so that Shir got the treatments in Philadelphia, but our daily routine was in New York, which allowed us not to shake the earth of our family again and keep on living in New York.

 

Unfortunately, that hope didn’t last, and after 3 weeks it all turned upside down. Shir started to breathe fast, and we already understood where the wind is blowing.

I celebrated my 40th birthday in a way I don’t wish anyone to celebrate – we were admitted with Shir, after a CT scan showed the disease is out of control again, forced to make a decision whether we go back to Israel, where Shir will die within weeks, or go to Philadelphia to get a long shot trial treatment that might work or not, but also taking the risk of potential side effect of growing swelling in the lungs which could lead to death the very same day.

We decided to take the chance. That treatment was Shir’s last chance.

The metaphor I was always thinking of, trying to describe my feeling since we got in the US, was that I am holding the window with my hands over my shoulders, keeping it from closing.

The feeling since we were sent home from New York, was that I’m holding the window now from the bottom, close to the ledge, desperately trying to keep him from closing.

 

The treatment in Philadelphia didn’t cause that severe side effect putting him at immediate risk but did not go as we hoped as well.

 

A few days after the treatment, Shir was tired and wanted to sleep. At first, we hoped it is a good sign. We thought his body was responding and fighting and that is what is making him tired. Soon we realized that is not the case.

Exactly one week after the last treatment, we got on a plane back to Israel, hoping to get home with Shir alive.

We got home, and Shir died 3 days later, at home, in our bed, surrounded with love.

 

I’ll spare from you the minutes, days, and weeks afterwards and the constant wondering if there was something that we could have done,

One thing I am 100% certain of - we came back to Israel knowing that the medicine world has not progressed enough and had nothing to offer to Shir. The breakthrough is not there yet, and we already tried every available option, and it is just not good enough.

 

And as much as time passes, more friends of Shir, little kids, are dying from that disease.

 

This type of cancer is hard to diagnose. More than half of the cases diagnosed when the cancer has already spread, and by then, the chances of healing are very low.

Now I know that Shir was diagnosed in delay. I don’t know if it would change anything, but I know that if there was a doctor at the end of the road, seeing the picture in full, putting all puzzle parts together, Shir might had a better chance.

And that thought won’t let go.

Because even though we really did our very best, every single thing we could, we didn’t save Shir.

 

There is no sufficient awareness to neuroblastoma today. Not among the public, and not among the doctors. Not enough research, not enough PR, even though 90% of kids diagnosed with neuroblastoma are under age of 5.

 

Now I know what I already knew in other fields – money is the name of the game.

 

Neuroblastoma is a cruel, rare type of cancer, which is missing funds, and so the breakthrough is a long way ahead.

 

But what I have learned by now, is that there are potential breakthroughs, but since Neuroblastoma is not a money maker, it’s not something that gets attention or gets funded the way it should, even when it represents 8% of all childhood cancer types, and yet responsible for 12% of the death cases caused by cancer in kids.

 

There is a potential cure, which in some of the cases was even proven effective on animals but cannot get financial support.

And knowing that, is something I cannot just sit back and watch from aside.

 

To me, human lives means more than that, and everybody deserves a chance.

 

I will do everything in my power to change the fate of children with neuroblastoma.

 

I truly believe that kids, families, parents, and humans deserve better.

 

In the memory of Shir, my love, and all kids that lost their lives. And in the honor of all sick kids.

Please join my journey.

Ways to volunteer:

Help us diagnose on time!

As a family of a patient, we would be happy if you could share with us your story about your child’s symptoms till diagnosis. This information will assist with raising awareness to neuroblastoma, and support early diagnosis, which can literally save kids’ lives.