Thursday March 15, 2007

This is one of my favorite pictures of Sophie. We used it for our Christmas card in 2005.

Sophie has been continuing her radiation and has done pretty well. She is even getting used to not being able to eat in the morning. Of course she still wakes up saying, "I'm hungry." But I have been telling her, "Today Dr.Gajjar says we need to wait until __ time to eat so that ice cube can melt faster." Not sure why, but she believes that and has patience. Telling her that, along with the fact that we talk all morning about what she will eat when she can, as well as our adoption of the philosophy, "if Sophie can't eat, no one can eat" has seemed to help. After Tuesday's radiation, they took some "pictures" to make sure that nothing has changed that would effect the placement of the radiation beams. It is reassuring to know that she is constantly being evaluated for change. The doctors won't do another MRI until the completion of radiation because they said that the initial radiation treatments tend to "anger" the tumor as the cells die, so an MRI might indicate that the tumor looks worse even though that isn't truly the case.

We have a few more PT appointments under our belt, and Sophie does well with the "games" they play, although she tires easily. She usually cries and does not want to participate, but the therapists do a nice job trying to make the therapy fun, and we are hoping to make progress with her leg and upper body strength. We also finally made it to her OT appointment, and the therapist said that we shouldn't splint her thumb because it didn't look "that bad" and that a splint would limit the use of her entire hand. She asked us to describe how much Sophie has been doing for herself in the way of walking, eating and dressing etc. It was quite an eye opener because I hadn't realized just how much we are doing for her. She wants to be carried, fed and dressed by me about 90% of the time. The therapist showed us ways to encourage Sophie to be more independent even though that is the last thing she wants to be right now.

We are excited that we have gotten permission from Sophie's doctor to reduce her steroid dose from 8mg to 7mg a day for the next week, and then if all goes well, we can drop it another milligram or maybe even 2 next week. We are anxiously awaiting some improvements in her symptoms so that we can be reassured that the radiation is working.

Again, we are grateful for all of your thoughts, prayers and sentiments. We also continue to appreciate the gifts that many of you are sending. It hit home just how many people love Sophie when Marc went to the mail room the other day and the ladies working just laughed. Every single package that they had received that day was for Sophie. I think there were 7 that day, 4 yesterday, and today there were 8! We are so fortunate, and realized that when another Mom who was with her daughter (a little girl Sophie's age) saw Marc in the mail line with all the packages and said, "Weren't you down here yesterday getting packages?" When Marc smiled and said, "yes" she went on to tell him that she has been here 2 YEARS with her daughter, who has had 3 transplants and is now in remission, but has yet to receive a package! Marc felt so bad, and when he came and told me what had happened (as I waited with Sophie in the waiting room for her next clinic appointment) I was so tempted to tell him to take some of the packages back down and give them to that little girl. The guilt of not seeing what was in each package and not being able to thank the appropriate person overcame me, and I changed my mind. This morning we put together a little package of our own to take to the mail lady in hopes that she might remember the little girl who I am referring too, but she didn't. I am still feeling bad about that.

We also want to thank those of you who are organizing fundraisers. We cannot believe the support and are utterly overwhelmed by the number of people in the Avon Lake/Avon and Trenton, MI area who have offered to help, and also overwhelmed by those who actually are finding ways to do so. Everyday we hear something new that somebody is doing. We are oh so grateful. Words cannot even begin to covey our gratitude, so we thank those of you who have helped in big and small ways. It is all the same to us!

Marc's parents came last night and will be here until tomorrow morning. It was nice for Sophie to see them and play with them and open the gifts they brought, and it gave my parents a chance to come with us to Sophie's appointment this morning and see St. Jude's since they have been stuck here at the apartment with Sarah the past couple weeks. We still realize every day how blessed we are to have my parents here to help as I watch the families that bring their little ones along as the older ones are being treated; and I feel lucky to know that Sarah isn't confined to a stroller all day, and that she can eat and sleep on somewhat of a normal schedule. Sarah, by the way, is finally adapting. She has started sleeping a little better and her runny nose and congestion are really improving. Maybe it's the prayers, because neither one of my girls have ever had a cold that lasted less than a week, and Sarah was only under the weather for 3-4 days. I was reading a "Letters From Heaven" book today that the ladies in my Cincinnati subdivision sent me which said, "Allow one bright pinpoint of light to enter your darkness. Allow one brilliant ray of hope to penetrate your gloom." Today, Sarah's health and the reduced dosage of steroids for Sophie are my rays of hope. We thank you from the bottom of our hearts for your prayers and support. Please continue to keep sending those positive thoughts and prayers to God so that we may be granted Sophie's miracle.