Things have been busy here. Maddie’s birthday on Nov. 30th was fun, she really enjoyed opening gifts this time. We were just so thankful to get to spend both Thanksgiving and her birthday at home this year. We truly have a two year old now, she was having a little mini tantrum just a few minutes ago…..
Starting the Monday after her birthday, we had a week of steroids which made life interesting as usual. We visited the clinic 4 out of 5 days last week because of count issues and in an attempt to get rid of the Parvovirus which we have been blaming her weird counts on.
So this week, the weird counts have continued and it seems that our attempt to “fix” her Parvovirus has not worked as planned (at least not yet). What this all means is that she has continued to need blood transfusions to keep her hemoglobin at an acceptable level. We were in again today to check her hemoglobin and we will be going back again Friday for a transfusion if she does not recover on her own before then. So far, maintenance has been almost as busy as the harder portions of the protocol, but we hope that improves soon.
One of the fun (read with sarcasm) things about Parvo is that the symptoms of it mimic relapse in a child with leukemia. So what we have been seeing and unable to control is starting to worry us a little bit. Our doctor asked us to schedule a bone marrow aspirate for Monday morning to make sure nothing else is going on in there. That scared us, but after further discussions with him, we feel that it will help us get a better idea of what is going on. We are waiting until Monday becuase he wants to give her a chance to recover her hemoglobin on her own in hopes that we can cancel the BMA Monday. So he does not feel it is urgent, which makes us feel a little bit better.
So we would ask that you pray both that Maddie can recover hemoglobin on her own, but more importantly that she remains in remission. We have always known that as we got further from the hard chemo the chance for relapse increases, so we pray that a return of her leukemia is not what is going on right now.
On a positive note, Maddie feels really good right now except for when she is anemic, which is more often than we would like (about every 2 weeks he have to get a blood transfusion). She is running all over the place and can even climb up onto couches by herself. She keeps us very busy, which gives me less time to worry, which is good. I am going to try to upload a bunch of new photos soon when I get time. We videotaped her opening gifts on her birthday and I plan to share that too as soon as I get around to downloading it. Her hair is growing back in again and it is really nice to think that she might actually get to keep it this time.
She is absolutely amazing. Please keep her in your prayers!
Love to everyone,
Liz, Brandon, and Maddie