June 1, 2007- Good news and bad news

Keira did very well today. We should be used to it by now, but we are still in awe of our 13 month old who takes in stride what would make either of us fall apart. We had our last day of Round 4 so now we wait for a couple of weeks, run some more tests, and see what kind of progress we have made. We are hopeful, but we are still nervous.

This morning we met a very cute little boy in clinic. His blue eyes looked just like Keira's. He looked like a perfect 12 month old. As we spoke with his family, they told us that he had been sick recently and his pediatrician had drawn bloodwork which had shown all his counts to be low. They were there today to get labs redrawn and were planning to do a bone marrow biopsy if his counts had not improved. As we talked with them, I remembered the day we did Keira's first CT. The wait for the results, the fear, but the feeling that surely our child was ok. We were wrong. The good news is, this little boy got to go home with a clean bill of health. We rejoiced with his family and felt relief with the news.

When we returned home today, that relief quickly left when we received an e-mail from the parent of a child newly diagnosed with neuroblastoma. Cancer takes families and turns their lives upside down. Before we entered this world, we had no idea what the reality of pediatric cancer was. We didn't know that cancer kills more children than any other disease. In fact, to get some perspective, each year cancer kills more children between 1 and 20 years of age than asthma, diabetes, cystic fibrosis, and AIDS, combined. The treatments that we currently have for cancer aren't good enough. They don't work enough of the time and they have terrible side effects. Keira is very fortunate. We spoke with a mother today whose little girl (20 months old) has had to have nutrition through her veins for 5 months because she can't eat enough to maintain her weight. Some of the other side effects include loss of hearing, impaired memory, liver disease, and heart disease.

The Conquer Childhood Cancer Act of 2007 was introduced in March. This bill will amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers. We have written our legislators asking them to support this bill. Follow this link: Conquer Childhood Cancer Act of 2007 . It will take you to a page where you can quickly and easily also write a letter. Please take a couple of minutes and let your voice speak for our children. There are many of them, but they are too young to speak for themselves. We need to fight for them.

Thank you

Jason, Erin and Keira Grace