caterina

2007: A Year of Challenges

After finishing 2006 with many great strides, 2007 brought a number of challenges. We learned that the road post-transplant does not follow any rules nor regulations. Our expectations of continued recovery were set back by a number of illnesses. Caterina spent a good part of February and part of March in the hospital due to viral infections. Her blood counts took a huge downturn, particularly her white blood cell count. This was completely unexpected not only to us but also to her team of doctors. There was seemingly no explanation for why all of a sudden she developed severe neutropenia (very low white blood cell counts; in her case down to zero). We traveled to Duke in April and spent 5 weeks trying to resolve her issues. To this day we are still not sure what exactly happened and why she lost all her white blood cells. Many theories abound but the truth is that this transplant road is not easy and there is no guidebook to follow. We tried a new medication, Rituximab, along with high dose steroids and a number of other medications, including high dose IVIG to try to boost up her white count. Things stabilized but it was clear that her immune system was extremely frail.

Because of the number of antibiotics and other medications that Caterina has been on for now 3 years, her stomach was significantly hurt. Her nutrition deteriorated dramatically and she lost much weight. We had to start her on intravenous nutrition (TPN), and she has been on this for almost one whole year.

We spent another 4 weeks in North Carolina over the Summer; due to continued nutrition issues and a lack of being able to have Caterina gain weight, we had to have a g-tube placed in her belly. This surgery took place in July. In August we came home to NY and in September Caterina welcomed her baby sister Arianna.

The Fall of 2007 was a stressful one. Despite the joy of welcoming a new sister into her world, Caterina’s health was still extremely frail. She did not gain the weight we had hoped and continued with terrible diarrheas and malnutrition. She was hospitalized a number of times in November and December for low blood counts and infections in her bloodstream (some of which can happen due to the fact that she has a mediport). The significant usage of antibiotics again impacted her significantly. There was much debate among her medical team as to whether her gut issues could be a manifestation of Graft vs. Host Disease (GVHd), so in November the doctors at Sloan Kettering performed an endoscopy and colonoscopy. The conclusion was that she did not have GVHd. It has been hard to gauge the certainty of this given that the tests were conducted while she was on low dose steroids, which can impact the results. Overall, the general conclusion has been that her low white count and resulting susceptibility to infections, combined with frequent usage of antibiotics has been a major contributant to her damaged gut.

We have been working with nutritionists and other GI specialists to come up with an appropriate diet and work slowly to try to improve this difficult condition.

Despite all of her trials and tribulations throughout the year, Caterina’s will and spirit remained strong. As 2007 welcomed 2008, she continued to show us her smile, her sheer determination and a spirit that quite honestly has shown to be indominable. She is a funny, lively, energetic, intelligent, curious and sensitive child who has given enormous lessons to so many in her short life so far.

We welcomed 2008 with the hope that the Winter viruses would be lesser and so far have witnessed a more stable overall health for Caterina. She continues on nightly TPN and we are striving to find ways to get her  to eat and her nutrition up to par.

We hope for much more continued good health to come.