11-22-10

Friday Oliver, my mom and I went to Iowa City again to see the hematologist. Oliver had his blood drawn and that didn't give us great news. His hemaglobin was 7.6 only 11 days after his last blood transfusion. So, that means that either he didn't get enough blood the last time or that his hemaglobin is decreasing faster than previous. The hematologist wants to start Oliver on interferon, a medication that will make the bone marrow produce red blood cell faster so the hope is that he wouldn't need blood transfusions. There are a few down sides to interferon though. It hasn't been used in babies younger than 14 months and Oliver is now only 3 months. It also has some serious side effects like either a high or low heart rate, low blood pressure, fever that could last a few days, vomitting and other flu like symptoms. Because of the risks, side effects, and Oliver's age we would also have to stay in the hospital for at least 24 hours so they can monitor him. They want to start him on the interferon when he is 4 to 4 1/2 months because he already has an extreme amount of iron in his blood that has caused his liver to be enlarged and getting blood transfusions just adds more iron that he doesn't need. In the research I have done, the interferon has also showed improvement in the iron levels in people with Oliver's condition so much so that with long term, low dose therapy, the affected people didn't need blood transfusions or chelation therapy (meds given to get rid of the iron in his blood). Chelation therapy is still an option for Oliver to get rid of the iron but he has to be 6 months for that to happen and that has side effects as well.

So, in the next month Shawn and I need to decide how to procede and what I will do about work and taking care of Oliver. He could be getting the interferon 2-3 time a week to begin with and if we have to stay in the hospital for 24 hours each time, we would need to do something else about work so we can be there for Oliver as he fights this rare disease. We hope to have more answers about interferon and chelation therapy after our next visit to the hematologist. He also did bring up bone marrow transplant or stem cell transplant but that is not the best approach for Oliver since the best match for him would be from a sibling.

This past weekend was my first weekend to work so Shawn and Oliver spent quality time together, with a little help each day from both sets of Oliver's grandparents. I even had supper made for me Saturday night and many chores off the honey-do list done. So I must say that I was very impressed with Shawn. Here's some more pictures of our little cutie.

Big smile wearing one of his Oliver tractor shirts.

Go Hawkeyes!!!