Saturday, May 16, 2009

A Slight Delay

Today, Isabella was supposed to receive her third day of chemotherapy, which consisted of carboplatin. One of the side effects of carboplatin is that it may affect kidney functions, so every morning they analyze her urine to check her creatinine clearance. This morning, her creatine clearance was lower than normal, which may indicate an issue, so as a precaution, the doctors decided to skip today's chemo dose, check her urine again tomorrow, and go from there. They didn't seem too concerned about it and have indicated that a high percentage of kids on this chemo cycle have this type of delay.

Other than that though, Isabella is responding surprisingly well to the first two doses of carboplatin. Her appetite has been excellent and she only had a little nausea on Friday morning. She did throw up a little today, but it was after she had just eaten and then played hopscotch about a dozen times! We don't think this vomiting was due to the chemotherapy because immediately after she threw up, she said she was hungry again and ate a plateful of baked ziti! Her energy levels remain high as well as her spirits.

She also got a visit from Annalise and Nathaniel today and the three of them played for a few hours this afternoon. In addition to the hopscotch, they played catch, played on the computer, and ran all around the pediatric unit.

Thursday, May 14, 2009

Chemo Cycle 5 Begins

Isabella got her first dose of the last cycle of chemotherapy today, a four hour drip of carboplatin through her new port. It usually takes her a couple days or so before she begins feeling the effects. For now, she's feeling great and her appetite has been pretty good. So one day down, five more to go. Julianne stayed with Isabella last night and tonight, and it will be my shift tomorrow and Saturday. I don't know how we did this for four months before!

Wednesday, May 13, 2009

Getting Settled In

Once we got back to the Pediatrics unit, Isabella was so hungry she had a couple pudding cups. In this picture, she shows off her brown, pudding smile!
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Out of Surgery

Isabella is out of surgery and resting in the recovery room. The surgery went well, but she is feeling a bit achy. Her appetite is ok as she had a popsicle and some yogurt and is asking for more food. We are now just waiting to be transported to the Pediatric floor.

Tuesday, May 12, 2009

Last Day of School

Today, Isabella went to kindergarten for the last day. Her teachers and classmates gave her a small party and some gifts as she left.

But tomorrow, as her friends continue with the school year, Isabella returns to the hospital. There she will have surgery to replace the mediport in her chest with a different type of port. She will then receive chemotherapy through the port for 6 days beginning on Thursday. We will probably be in the hospital at least through the first week of June, as it will take that long for her blood counts to recover. For details on this chemo cycle, refer to the post Chemo Cycle 5 Details.

Sunday, May 10, 2009

A Word from our Senator

I got the following response from Senator Lieberman regarding the National Childhood Brain Tumor Prevention Network Act. If you haven't contacted your representatives yet, there are links of to the right.

Dear Mr. Icatar:

Thank you for contacting me regarding your support for the National Childhood Brain Tumor Prevention Network Act (S. 305), which was introduced by Senators Charles Schumer (D-NY) and David Vitter (R-LA). Companion legislation (H.R. 653) was introduced in the U.S. House of Representatives by Representative Barbara Lee (D-CA). I support legislative efforts to promote biomedical research so that people can benefit from new treatments, and maybe even cures, for diseases.

As you may know, S. 305 would require the National Cancer Institute (NCI) at the National Institutes of Health (NIH) to establish a National Childhood Brain Tumor Prevention Network. This new network would be tasked with conducting and coordinating research, providing grants, and issuing guidance and recommendations from a panel of research experts with the ultimate goal of preventing and curing pediatric brain cancers.

I understand that very little is known about the causes of brain tumors in children and that the few risk factors that have been identified explain only a small fraction of all such cases. However, this disease clearly inflicts painful heartache on families and cuts short the lives of far too many children who suffer from brain tumors. According to NCI, brain tumors are the third most common type of childhood cancer, after leukemia and lymphoma. Tragically, however, unlike leukemia and lymphoma, childhood brain tumors do not have the same favorable prognosis. Each year, approximately 2,200 children and adolescents are diagnosed with malignant central nervous system disorders, over 90 percent of which are located within the brain. Sadly, children diagnosed with malignant brain tumors have only a 60-percent survival rate; and those who do survive have long-term health problems due to the invasiveness of brain tumors and their treatment.

I recognize that childhood brain tumors present a unique challenge for doctors and researchers since treatment options for children differ from treatment of brain tumors affecting adults. Despite the differences between brain cancers and other childhood cancers, as well as the differences better adult brain cancer and childhood brain cancer, NCI does not have a separate division dedicated to studying childhood brain tumors. The new National Childhood Brain Tumor Prevention Network set forth in S. 305 would help fill this gap in research and treatment, providing a much-needed resource for experts and doctors, as well as grant funding for research programs.

S. 305 is currently pending consideration by the Senate Committee on Health, Education, Labor, and Pensions. To keep track of future actions on this legislation, you can go to the "Bill Tracking" service at Please be assured that I will continue to keep in mind your support for critical efforts to combat brain tumors in children. We must do all we can to provide NCI with the resources necessary to study and fight this terrible disease and provide new hope for all children to grow up and lead active, happy, and healthy lives.

Thank you again for sharing your views and concerns with me. I hope you will continue to visit my website at for updated news about my work on behalf of Connecticut and the nation. Please contact me if you have any additional questions or comments about our work in Congress.


Joseph I. Lieberman