Tuesday March 13, 2007

We passed another week end here at St. Jude's. We had an appointment on Saturday morning so the doctor on call could check on Sophie's stomach. The wait to see the doctor was longer than the appointment. The doctor took one look at her and said she looked and sounded good. We then went to Babies R Us to look for a stroller since we couldn't find one at Target. We decided to buy a jogging stroller because it holds up to 50 pounds, and that was the only one strong enough to hold Sophie now that she weighs 40 pounds. We ended up buying the floor model because they had no more in stock, and Sophie enjoyed testing out the stroller in the store.

This week end was nice to be able to give Sophie a bath without having to tape saran wrap and bandages all over her port. She HATES the tape, and that makes it difficult to bathe her without getting the port wet.

We never made it to the zoo. We should have though because the temperture was close to 80 and sunny and gorgeous. But after church and stopping to play at the Ronald McDonald House playground, Sophie was just too tired and needed to nap. The radiation makes her really tired and we think she was still recovering from the night of no sleep on Thursday, and the hour we lost on Saturday.

Today we completed our fifth radiation treatment. I wish I could day that Sophie is getting better about the sedation, but she still fights it. Monday she had the port reaccessed after the week end and she did okay. She calmed down a little when I promised her she wouldn't have to be poked again for 7 days. Usually when the nurses come at her with the alcohol pad or the flush, she instantly starts saying, "close my shirt, is it time to close my shirt?"

I wish I cold say I kept my promise - while we were sleeping on Monday night, she rolled over, woke me up and said, "I think my port came out." So I lifted up her shirt, and there it was, needle and all. Need less to say we had to have it reaccessed this morning for radiation sedation and then blood was drawn for labs. Sophie was NOT happy this morning. We had physical therapy and she tired easily, but did brighten up for her oncology clinic appointment.

Her digestive system is working much better. We have been continuing to give her the laxative daily so that we don't have to worry about tummy aches. She still has a pretty good appetite despite the radiation that normally causes the side effect of appetite loss. We are trying to find high fiber tings for her to eat, but like most 3 year olds, she isn't crazy about broccoli.

It's hard to tell if her symptoms are getting better because she is so tired. She'll take a few steps and then want to be carried. Her right foot seems to be turning in a little and her right hand is still weak. She is definitely showing the weight gain in her face and belly, resembling kids who have been on steroids for a while. On the up side, I thought I saw a tiny corner of the right side of her mouth move when she smiled at her clinic appointment. We are told that she should show noticeable improvements of her symptoms by the end of the second week of radiation - that means by next Friday. We are excited that the radiation is progressing, but the feeling is somewhat bittersweet; knowing that after the treatment, relapse usually follows, and can be as early as 6 months post radiation.

Sometimes, it is hard to be happy, and other times, I'm surprised that I am able to function normally. On Saturday Sophie said, "I'm not sure I want to turn five. I only want to go to kindergarten if you can come with me." I instantly thought that it's realistic that she won't go to kindergarten and it made me so sad. I lie next to her in bed each night and rub her back, hoping that the power of my love could melt that ice cube. Sometimes I can't believe that there is a big tumor growing in her pretty little head, and I start to wonder just how long it has been there doing it's damage. I also find myself feeling guilty at times for not seeing the symptoms sooner, even though I know it wouldn't have made any difference in her prognosis. I get angry at myself for being so impatient when she didn't want to dress herself, or go potty by herself. I feel guilty that I listened to those people who said it was a phase, and I feel guilty for being so frustrated when she woke up so many times night after night. The only thing that gets me through is giving my feelings to God. That is the only explanation that I can think of for me being able to function as well as I am - that and all your prayers and support. I just keep telling myself over and over, that whatever is meant to happen has already been mapped out by God, and all I can ask for is the strength to deal with whatever God gives me. I try to remember all the fun times we have had and all the wonderful memories that are stored in my mind. I look forward to a healthy summer of more happy memories and just try to take one day at a time. Please contimue to pray for us, we need that day to day support.