IzzyBella's Gratitude Page

 Hello, my name is Isabella Grace Clary. I was born in Warwick, RI on February 13, 2006. I am the first child of Paul & Sherry (Chicoine) Clary. My parents said that everybody used three words to describe my early days - curious, happy & healthy.

      Who wouldn't be happy? Everything was new, I had lots of aunts & uncles, many cousins, two loving parents & cats! I was also able to travel, going to New York & Washington, D. C. a few times. On nice days I could ride in my stroller down to the beach, talking to everybody along the way.

Just before my fourth birthday there was a big change in my family. I was no longer the only child as I now had a little sister, Francesse Elizabeth. I soon shared everything I knew with her and we became best friends. In fact her first word was "Ba" - her way of saying Bella.

 The more I taught Frannie, the more there was to learn. I had recently started my academic experience in the loving, nurturing environment of Buttonwoods School for Young Children. The teachers were wonderful and I made many new friends. Soon it was time to move on to Oakland Beach Elementary School. Kindergarten and first grade were lots of fun as we learned many new things. I was very curious & outgoing so school was just the place for me. At the end of the day when Mom would pick me up, she didn't have to look for me, she would just listen as my name was called so often in the school yard by my many friends. Soon it was June and I had the whole summer off, little did I know that events would occur which would prevent me from even beginning the second grade.

What an excellent summer it started out to be. There was so much to do - swimming, hiking, carnivals, fireworks and sleepovers with my cousins. Then something wasn't quite right. I had less energy, was bruising easily and my loose tooth kept bleeding. A visit to the dentist led to a trip to my regular doctor which resulted in a late night phone call advising us to go the Hasbro Children's Hospital Emergency Room as soon as possible for a blood transfusion. More tests were done which showed a diagnosis of Severe Aplastic Anemia.  

What that meant, I soon found out, was that my body had stopped making blood cells - red, white & platelets. I needed numerous blood transfusions until a treatment could be found. These were very long, frequent visits at Hasbro's Tomorrow Fund Clinic. The exceptional staff made a difficult time as good as it could possibly be. It was decided that a Bone Marrow Transplant would be the best course of action and that a matched sibling donor was most likely to be effective. Mom, Dad & my family were all hoping my 3 yr old sister, Frannie, would be a match. I was glad she was not because I didn't want her to have to go through a painful procedure. (even though that meant trying to find another suitable donor for me)

A test completed on September 11, 2013, which was my parents 25th Wedding Anniversary, showed a new, very unexpected match. Despite about a 1 in 200 chance, my dad was a close match and could be my donor.

Soon plans were made for my treatment to begin. It meant going to Boston Children's Hospital and Dana Farber Cancer Institute for at least a few months.

After several false starts, I was admitted to the hospital about a week before Thanksgiving, with the plan being to start my chemotherapy on the holiday. As I was going through this difficult treatment I changed the name I preferred to be called from Bella to Izzy. Everyone I met in Boston knew me by my new name. The chemo certainly was not a whole lot of fun but everybody on the 6 West Treatment Team helped to make me as comfortable as possible while keeping me smiling. 

 Wednesday, December 4 was the day I received my new bone marrow (also called stem cells) and the transplant day is known as Day Zero. The first 100 days after transplant are crucial as you wait to find out if your body will accept or reject the new cells. Not to mention a bunch of side effects to watch for during this time. Although there was definitely some discomfort and many challenging days, eventually I did start to feel a bit better.

Although the hospital isn't the place I'd choose to be,  particularly at Christmas, everyone made the best of it for me. There were crafts to do, movies to watch, hanging out with a quartet of New England Patriots, schoolwork to complete, laughing with my nurses, a chat with Santa & his elves, cards to open, books to read, music to listen to and games to play. The only child allowed to come see me in the hospital was my sister, still, I had many visitors and some of the money from the benefit was used to buy me an iPad, which enabled me to keep in touch with my cousins, classmmates and friends. 

We celebrated Francesse's 4th birthday in the hospital and soon after, Santa was able to find my room to deliver gifts for both Clary girls. Fran arrived early Christmas morning and we opened our stockings and gifts together. Dad let me stay up until midnight on New Year's Eve so that I could watch the ball drop and welcome in the new year with him.   

My holiday season became even happier when I learned that I was going to leave the hospital for a Ronald McDonald House apartment on January 2. I was released during a big snow storm, but after being isolated for so long in a hospital room, I was more than ready to get outside! It felt so freeing to be in the snowy hospital garden, the cold winter weather only added to my elation. It seemed as though 2014 was getting off to a great start.

 Over the next two weeks I started getting used to life away from the hospital. I was having fun with my sister and spending time outside, despite the cold. It was nice to have some of the dietary rescrictions lifted, as I was able to have a few of my favorite foods again.

 Then the doctors told me I could go home, finally I'd be able to cuddle with my two cats, Sowelu and my best buddy Aurelius. I missed them so much and would be able to see them again on January 16.

It was great to be home again, at last. The next morning Fran & I had so much fun opening the Christmas gifts mom and dad had gotten for us. We played all day, it felt great. Later that evening, however, I started to feel less than my best. Gradually over the weekend I felt worse. Mom and dad were in touch with the doctors in Boston until finally I had to go back to the hospital on Monday, after only feeling good for one out of my four days at home.

At the hospital there were a lot more tests to run as the cause was not clear. There was concern about my having Graft vs. Host Disease, which would mean that my body was trying to reject the transplant. After waiting for test results over a few weeks, it was determined that I had contracted a viral infection, not GvHD. Either way, this re-admission was the hardest part of the entire process. I had already been welcomed home and thought I was on an easy path to wellness. Fortunately, my body was able to defeat the virus without medication.

 After almost 3 weeks, I was discharged back to the Ronald McDonald House. It was only a few days this time before I was on my way back to home, sweet home. I had been in Boston for Thanksgiving, my sister's birthday, Christmas Eve, Christmas Day, New Year's Eve, New Year's Day - although everyone caring for me was great, I did not want to be there for my birthday as well. Luckily, I made it home just before I turned eight. I was determined to stay home this time. Although I still needed an IV at night and clinic visits every couple of days, I was feeling much better. Though I didn't need the assistance, Frannie wanted to be helpful and it made her happy to carry the IV bag. Eventually, some of my appointments were scheduled at the Tomorrrow Fund Clinic, allowing me to visit with some old friends. I started to settle into some sort of routine and my tutor, Susan Masse, began coming nearly every day (even Saturdays) to keep me caught up with my schoolwork.

 March 14, 2014 was my 100th day since transplant. I no longer need my IV and my doctors are lowering my medication levels. My family had a small gathering of the few people I can have in my house to celebrate the milestone. The weather is getting better, I'm feeling more & more like my old self and soon I'll be able to visit with some friends & family I haven't seen in person for quite awhile.

After nearly four months in Boston, my plan now is to keep getting better and to help others whenever I can. This is my story, there is a lot left to be written, but Thanks to All of You it looks as though it will be a happy tale.

With Love,

Izzy/Bella