Wednesday April 11, 2007

I know it's been a few days since I've updated, but that is because Sophie is doing much better. She is requiring a different type of energy from me, which has proven to be even more exhausting! We are seeing lots of smiles, and hearing lots of laughs. We've actually been having fun, and her personality is coming back.

I do want to try and keep this short, but promise to post again soon, because I could go into more detail about a lot of things.

We have 6 treatments left, and Sophie is finally conquering her anxiety. We aren't sure if she is really getting used to all of this, or if the steroid dose reduction and/or radiation to the tumor is helping with her moods. Before we head to St. Jude each morning, she asks how many appointments she has, and what they are, and what order they will happen. She has gone from saying that she like "talking appointments" the best, to saying she likes "sleepy medicine" (radiation) the best. Today's schedule was a little different than the usual - we had radiation first, then PT. While we were waiting for my Dad to pick us up (after her 2 appointments), she said, "I wish I could do my sleepy medicine again today!" In fact, while she was being prepped for sedation, she was laughing and talking with the staff (something she has never done). She was also sitting up in recovery when they called us back, and was wide awake. Usually she is grumpy and not wanting to say much. We are grateful for that, and for the fact that Sophie is more willing to walk through the hallways of St. Jude.

She continues to carry about 6 more pounds than she came with, so she still looks very different. She is losing more and more hair everyday, and now the loss is in a U shape around the base of her neck and up toward her ears. Luckily her hair was pretty thick prior to radiation, so it is possible to hide some of the loss. Her smile is back on her right side. We talked to the doctor on Tuesday and shared our concerns about weakness and drooling on the left side of her face . He seems to think that these symptoms, including periods of redness and tightness are a side effect of the decadron. We are down to 1 mg a day now, so we are hoping that we will start to see the weight and appetite decrease, as well as the left side weakness. Sophie's doctor is hopeful that we will be down to a minimal dose (if any) by the time we return to Ohio.

As far as her limp goes, we are told it is due to muscle weakness in her leg. Not really from lack of use; more likely due to the connection to the nerve not taking place as a result of the tumor. We are hopeful that this will go away because the radiation should shrink the tumor. We realize this may take time due to the way the radiation initially "angers" the tumor and areas of necrosis. Apparently this tumor is not consistent in the way it presents symptoms, so the fact that her walk is not yet back to normal doesn't mean that it will never be normal.


We have had the opportunity now to personally meet 4 other families who are traveling the same road we are in dealing with this horrible disease. Please pray for these, and all of the children who are fighting this battle.

In my last post, I was so focused on Easter and Marc's RCIA, that I forgot to mention my brother Charly who came to visit for the second time since we have been here.
It was wonderful to have him here to share in Saturday night’s service, as well as another playmate for Sophie for the weekend. And he was gracious enough to cook us all French toast for breakfast one morning during his short stay. Having somebody else here to take over the day to day tasks, even if just for one meal or a couple of days makes a difference and certainly lightens our load. As Mom has mentioned before, our weekend visitors are many, and although their visits are very short, the support they bring is amazing. I know it was a long drive for Charly for such a short stay, but we truly appreciate him taking time from his schedule to be here with us.

I will try to update again soon, but for now I'm going to bed to try and get some sleep. Sophie only woke up 3 times last night. I'm hoping for the same tonight. She has an early radiation appointment (7:45) tomorrow, so I am planning on a little snack with her medicine around 11:30pm to tide her over. Oh, and last night was the first night without a pull-up, and she was great. I think I'm going to be brave and leave it off for radiation tomorrow.

We thank you again for your prayers and support. We are still getting Easter cards and gifts..the mail is slow, so please do not send anything more because we might not get it. Sophie and I have our return tickets booked for 2:00pm next Thursday, so pray that everything goes as planned from now until then. We want to be back in Avon Lake by Friday so that I can make it to Trenton on Saturday for my sister's baby shower.

Please keep the prayers coming. We thank God everday for all of you, and pray for you more than you can imagine. We are so touched and grateful for all that you are doing for our family, and ask that you might continue these prayers for Sophie's miracle.