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    Posted January 22, 2014 by
    jackieros
    Location
    Somerset, New Jersey
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Rhabdo Kid

     

    Hi. My name is Yuval. I'm 2.5 years old. I'm from Israel. I have two older sisters. We live in a city called Modiin. And I was born with rhabdomyosarcoma. Big word for a little kid, huh? Well, I've had to deal with lots of things that a kid my age never should, so one big word is not going to scare me off. Let me tell you a bit about it.

     

    Rhabdomyosarcoma is a somewhat rare type of cancer that affects children. The kind I have (embryonal rhabdo) usually affects kids from age 2-10, but mine was already there the day I was born: a 5 cm golf ball on my neck. I had most of the tumor surgically removed when I was 6 days old. By 2.5 weeks old (about a week before my official due date), I had already had 2 surgeries, an ultrasound, an MRI, a bone scan, a CT, and my first round of chemo. Although less than pleasant, my treatments went as smoothly as possible given the situation, and at age 8 months, I was declared "NED" (no evidence of disease).

     

    The next 18 months were pretty normal with the exception of a follow up MRI every 3 months. I was an extremely active and well developed toddler. Other than a few scars, no one would ever guess I had such an unusual infanthood.

     

    Then in September, a couple months after I turned 2, Mommy felt a lump on my neck while she was shampooing my hair. It was just a few centimeters above where the original one had been. It took a couple weeks of tests and then a needle biopsy before the official diagnosis confirmed what Mommy already knew: the monster was back.

     

    So in October, I stopped going to preschool, and started going to the hospital regularly instead. First, I had another surgery to remove the new tumor and insert a port catheter in my chest. Then I started an aggressive 54 week chemotherapy protocol. Many of the chemo treatments involve 3-6 days of hospitalization attached to an IV (or “Ivy” as I call it) the whole time. That’s really hard, considering that I love to run and turn in circles and play outside, and I’m not allowed to do any of that when I’m attached to ‘Ivy’. And the stuff they give me doesn’t make me feel very good either. Plus it likes to eat my white and red blood cells for breakfast. In the 12 weeks since I started this protocol I’ve already been hospitalized 3 times for low white blood counts (called neutropenia) and received 2 blood transfusions due to severely low hemoglobin counts.

     

    Rhabdomyosarcoma is like a muscle gone mad. It picks a place and starts growing. No one knows what makes a rhabdo tumor wake up after it’s been in remission, but when it does, it really wakes up. It can double in size every week and at some point, some of the cells get bored of hanging out in one place and they go off in search of another good place in the body to settle in and start growing some more. Even when the main tumor gets removed by surgery, there are almost always lone tumor cells that continue to roam around in the tumor area. Relapse rhabdo is always bad news, but once it starts spreading it’s very hard to control it. Many of Mommy’s friends from her “Rhabdo-Kids” mailing list have lost their children because the rhabdo managed to spread out of control. Unfortunately, because rhabdo is relatively rare, there isn’t much funding given to rhabdo research, and very little has been done towards finding a cure for it.

     

    I’m lucky that so far in my case there are no signs of spread. But my new tumor was in a lymph node and the lymph system is like a secret passage way for tumor cells to run around in, so it’s pretty dangerous and we need to make sure we kill every tumor cell before they figure out how to get into that secret tunnel.

     

    That’s why we have to do radiation this time too. Radiation kills every cell that it hits at full power. The problem is that radiation is like a car when you try to put on the breaks. It keeps going and hitting stuff along the way until it comes to a complete stop. So it damages lots of healthy cells too. And the younger you are, the more damage is done, since every lost or damaged cell is one that would have developed into many more cells as I grow. With my tumor in my neck, my spine, spinal cord, jaw, tongue, salivary glands, thyroid and other organs are all at risk for damage from the radiation.

     

    After doing lots of research, Mommy learned about proton radiation. This is a special type of radiation that can start and stop much quicker, so that less damage is done outside the target radiation area. But there are no proton radiation centers in Israel, and only about 12 in the United States. That’s why Mommy and I have come from Israel to New Jersey this week. We are going to have proton radiation done at ProCure in Somerset. Starting next week, I’ll be doing 30 rounds of proton radiation, 5x per week for 6 weeks. Millimeters count in this game, so I can’t move an inch (or a millimeter) during the treatment. Thus every treatment will be under full anesthesia, meaning no breakfast (or any food or drink after midnight) for the next 2 months.

     

    After we finish, Mommy and I will fly back to my dad and two sisters in Israel, and I’ll finish up the rest of the protocol, including lots more planned hospitalizations for chemo, and unplanned ones for low counts (not planned, but we know it will happen…). We’ll celebrate my 3rd birthday, and a few months into next school year, we will finish the treatments. It’s going to be hard. Hard on me. Hard for my mom and dad to watch. Hard for my 2 big sisters to handle.

     

    But it’s all going to be worth it. Because we are going to beat this monster to a pulp, and then some…

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