RhabdoMyoSarcoma (9 months old girl)

This is the story of Shani (9 months old) who was diagnosed with RMS. Her parents relocated from Israel to NYC to provide her the best treatment available, and they claim that by doing so they have saved her life. *** WHEN RELOCATION SAVES A LIFE

Shani is the daughter of the founder of MyChildCancer.

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Hi. My name is Oded. We are from Israel.

Diagnosis
My daughter was diagnosed with cancer when she was 9 months old. She was diagnosed with RhabdoMyoSarcoma (alveolar), stage 4. Once the diagnosis was confirmed with a biopsy we immediately started treatment in one of the leading hospitals in Israel.

Treatment in Israel

She received 5 cycles of chemotherapy under the Israeli protocol (which is following the European protocol) and during that time we started looking for a hospital or a doctor with extensive experience in this specific type of cancer as this is a very rare and aggressive type of cancer in a very young child.

Treatment in U.S

After searching the globe with the help of family and friends, we got in touch with Dr. Leonard Wexler from Memorial Sloan Kettering Cancer Center (MSKCC) in New York. We learned that while our knowledgeable doctors in Israel have never treated babies with this combination of age, sub-type and location in the body, he has treated dozens of similar cases.

Therefore, once we have finished the 5 chemotherapy cycles in Israel we came to New York, originally just for surgery & radiation, however when the first scans results came back it was clear that the tumor is growing again, which meant she was not ready for surgery. We needed to restart the chemotherapy. This time she received an additional 9 cycles of chemotherapy under a different protocol which includes high-dose chemotherapy.

The high-dose chemotherapy was very very tough on our baby. Our child was suffering and being just little over 1 year old she was not able to express her needs. We were helpless, frustrated away from home in an unfamiliar environment.

In addition to the chemotherapy she undergone 2 surgeries; One main surgery during which the tumor was removed from her lower back and spine (performed by Dr. Mark Souweidane from Cornell across the street), and a second surgery to search for additional cancerous tissue in nearby organs, such as Lymph nodes (performed by the great Dr. Michael La Quaglia).

Radio Therapy

Following these two surgeries she undergone 20 cycles of Radiotherapy (RT). RhabdoMyoSarcoma is a type of cancer which responds well to RT, which makes it an important part of the treatment. Tumor being located in a very delicate place – touching the spine and surrounded with the bladder and other internal organs, it was very important to us that the RT will be done by the most experienced doctors we could find, to minimize the risk of the child’s future development and growth. That actually was another consideration of ours to go to MSKCC to begin with, as the RT doctors there specialize in children – that’s what they are doing all day long. As a reference, our RT doctor in Israel treats mainly adults as there is not enough volume of pediatric patients to do just that and subsequently acquire a great deal of experience.

In hindsight

All in all just over a year and a half of treatments in Israel and the U.S, but the end result was good. The end result was that she was declared ‘cancer-free’ and to this day, more than two years after she has finished treatment, she is still ‘cancer-free’.

Of course we know we are very lucky. We know many other children who are not with us today, some with the same type and stage who received the same treatment. RhabdoMyoSarcoma is considered a rare and aggressive type of cancer.

People ask us why did we come to get treatment in the U.S considering that Israel

is well known for its high-tech and advanced medical capabilities, medical devices and research. That being true, Israel is a small country; about 7 million people, which means that if you have a rare type of cancer, like in our case, experience would more likely exist elsewhere. In childhood cancer a doctor’s experience can make ALL THE difference.

My daughter’s case, the sub-type and location, combined with her very young age created a very rare combination of 1 in 403 million. When we came to Memorial Sloan Kettering she was actually treated with two other children with similar diagnosis and from a similar age group. We are convinced that by coming to the U.S for treatment we saved our daughter’s life.

This is our story in a nutshell.

If I could go back in time..

“If you could go back in time with your current knowledge and experience, what would you advise yourself, the day or the week after the diagnosis?”

The answer is almost never straight forward. Most of the times there are many things one would say, about the ‘do’s and ‘don’t’s and pits to avoid. For us, I think the most important and the strongest advice I would have given myself is to get actively involved in the decision making process. Be part of decisions regarding treatment. For this to happen though one should understand what’s going on, who is who, learn the terms, and keep close contact with the doctors.

In order to be part of the decision making Process you should be able to have an educated conversation with the doctor; when he/she speaks about the alternatives and the possibilities, you need to be able to understand what he/she is talking about and to ask the right questions. It’s easier said than done, as most of us are not doctors and there is a set of new terms to learn, but highly important. I have found out that being an involved parent could definitely make a difference in many different ways, from strategic decisions and all the way to saving my baby an unnecessary needle stick.

What would I recommend?

“What would you recommend to a fellow parent whose child was just diagnosed with the same type of cancer?”

In cases of RhabdoMyoSarcoma in a very young child, I would recommend to get in touch with Dr Leonard Wexler, currently at Memorial Sloan Kettering Cancer Center in New York.

Dr. Wexler is part of a team, however as the oncologist he orchestrate the treatment, including radiation and surgery when needed. He has lot of experience with that type of cancer (I would assume one of the most experienced doctors in the world for this type in children). Plus he is a true mensch with a great attitude for kids.

It is important to say that in order to get a second opinion from Dr. Wexler’s there is no need to relocate to NY for that. You should ask your doctor to contact MSKCC and get in touch with the medical team in memorial Sloan Kettering. If for some reason he/she fails to do so (or refuses), this is where you need to get actively involved and contact MSKCC yourself.

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