Merry Christmas and Happy New Year!
I know it has been awhile since my last update. We have just been really busy here, enjoying holidays together as a family and dealing with some of the side effects of Maddie’s 14+ months of chemo.
Maddie seems to be feeling well. Various members of our family seem to be getting colds and Maddie may or may not be developing one too. On Friday, we spent most of the day (11 am- 8pm) at the clinic and the hospital. Maddie’s hemoglobin was low again (sigh…) and she needed a blood transfusion. That takes four hours, but while we were waiting for the transfusion to start she developed a little fever so we had to run blood cultures and a urine culture. Her ANC was high enough that she was not immunocompromised, so they let us out of there despite the temperature, which had disappeared by the time we were done receiving blood. The temp could have been caused by a cold virus, and we are still waiting to hear if anything grows on either her blood or urine cultures.
Last week was also Maddie’s week on steroids, and because we need some more excitement in our lives, she began to have some episodes which were “possible seizure activity” starting Monday evening. She never actually had a seizure, but at times she would become really fatigued quickly, become agitated, and then her eyes would roll back into her head repeatedly as she nursed to sleep. So that was really scary to see. We discussed by phone with the doctors, and then went in Wednesday to have her checked out. Since episodes started on steroids (which are known to cause all kinds of weird behavior and psychosis) and because the frequency of the episodes increased the longer she had been on steroids, we stopped the steroids early to see if the episodes would stop. They have stopped for the most part though she did have a brief one again last night. So we are hopeful they are caused by the steroids, but to be certain, Maddie will have another MRI of her brain (which requires anesthesia) on Tuesday and a sleep deprived EEG (this is going to be miserable for both of us) on Thursday. One of the chemotherapy drugs that we inject into her spinal fluid is known to cause brain damage and seizures, so we really hope that this is not what we are seeing.
Since our last update, we did get the news that Maddie does not have Parvovirus in her marrow, so that means that the dropping hemoglobin is not due to Parvo. That probably means that she is sensitive to one of the medicines that she takes. It could be an antibiotic, but that is unlikely since we have only recently started a new one. So more likely, it is caused by one of her chemotherapy drugs. The drugs that she is on now are the same ones she will be on for the rest of her treatment, so it is problematic if one of them is keeping her from making hemoglobin. But as our oncologist has pointed out, it is far easier to deal with the hemoglobin dropping than it is to deal with a recurrence in her leukemia. So for now, we push on with chemo and we will try to figure out what is causing the drops in hemoglobin only if it does not increase her likelihood of relapse.
Despite all that is still up in the air for miss Maddie, we are still so pleased to start the New Year. We look forward to having a great year in 2009. While looking back at last year is scary sometimes, the most important thing is that she was in remission all year long. We hope and pray that we can say the same thing at the beginning of 2010.
We still look forward with excitement to a time when we can move up to live with Brandon in Quantico. With all that is going on right now, we are not there yet. Right now it looks like Brandon will be moving back to Camp Lejeune in eastern NC from Quantico in June 2009, so our window to live with him where there is a local COG Children’s Hospital is growing shorter all the time. At that time we will still have 4 more months of weekly chemo and then at least another year of monthly visits. We are trying to make the best decision we can to ensure that Maddie gets the best care possible, both from her doctors and her parents.
Love to everyone,
Liz, Brandon, and Maddie