Saturday, March 17, 2007

Thursday night Marc, Sophie and I went to dinner at Applebees (Sophie's new favorite place) with Nana and Papa and Grandma and Grandpa stayed at the apartment with Sarah. As those of you who have, or have had an 8 month old would know, eating out with Sarah is definitely a chore, so it was nice for us to get some time to spend with Sophie doing something other than doctors' appointments. Sophie wanted her usual chicken fingers with fries and a hamburger. It is still hard to watch her crave all that food, and even harder to tell her that she can't have it. We gave in and let her get both, but I'm happy to say she didn't eat all of it! She was in pretty good spirits, but was tired as usual by 7:00.

We've still been dealing with the challenge of baths on days when Sophie has her port accessed. Friday morning was no exception. If I was smart, I would get it over with at night, but Sophie fights it, and I just don't feel like battling her, so I always give in to her requests to "do it in the morning." Not only does Sophie hate the tape that we use to cover her port with the ziploc bag, but she has also become very self conscious of the fact that it is there. Grandma's job has been to kneel over the tub holding a washcloth over the bandage so no one (including Sophie) can see it. That breaks my heart. She hasn't looked in a mirror lately (at least to the best of my knowledge) but I'm sure her poor little self would be mortified by the way she looks. Sophie has always been particular about how she looks, and I'm sure she would be disappointed at how different she appears.

On Thursday before sedation we decided not to do the vercid (I don't know if I am spelling this correctly). This is the medicine that they have been administering to her before sedation/radiation each day that relaxes her so she is not anxious about going into the radiation room. She had been saying that the medicine made her dizzy (a normal effect) so we wanted to see if she would be different without it. She was great on Thursday and came out of radiation fine. Friday was a different story. Maybe it was the tub experience prior to leaving for the hospital that made her grumpy, but she wanted nothing to do with the radiation nurse. We managed to get her sedated without the vercid, but she was crying and didn't want me to put her down. I still hate when I watch her body go limp and when I kiss her before I leave the room. She woke up quickly from the sedation; even before they had removed the needle, and was anxious to sit up. The good thing was she agreed to sit in the wagon for the ride to the car, because she usually demands to be carried. On the way out, hospital volunteers were setting up St. Patrick's Day crafts and such, and Sophie was so torn in deciding whether or not she wanted to do the activities or go back to Grandma's "Appointment" as she calls it. We could tell she was tired so she decided on having her nails painted green while she remained in the wagon. It made me excited that she was a little like her old self in wanting to have her nails painted.

She was very tired on Friday, and asked to lay in bed 3 different times. Sometimes she wanted to sleep, other times she wanted me to scratch her back or just talk. I love that she still says her funny Sophie things. I need to start writing them down, because when I try to remember something funny she said, I can't. The resting must have helped, because at 11:00pm she was wide awake, as was Sarah who wanted a bottle. The four of us sat on the couch as a family. Sophie seems to be a little less clingy. She allowed Marc to lay down with us and rub Sophie's head, so that is progress. As we lay there, I would start to fall asleep and I would think she was sleeping and she would roll over and say whatever was on her mind. Last night it was, "I think we should have another baby." and "Grandma's hair is going to look funny again in the morning." I just squeeze her and tell her I love her.

This morning I convinced her to go back to bed when she woke at 6:00am and she actually slept until 7:00am. She is still getting up every hour to go to the bathroom or tell me that she is hungry or thirsty. But last night she slept the longest stretch yet 4:00-6:00am. I needed that.

Today, Sophie had one of her best days. I have yet to decide if she was just so excited for Aunt Leslie to come (they played and belly laughed all day) or if her reduced dose of decadron is helping with her moods. Sophie went on a stroller ride - an hour and a half one at that - with Grandma and Aunt Leslie, and didn't seem to mind that I wasn't going. They walked to the Mud Island store and had a chocolate chip cookie and lemonade and laughed, played and collected the sticks the whole time. I am so glad for that. In fact, when Sophie came back, she told me that she had fun on the walk. I don't think she has said anything was fun since we have been here.

As far as Sophie's symptoms, she is still not using her right arm and hand. But Aunt Leslie tells me she started using her right thumb a little while they played. She is still walking with a limp. It's hard to describe. It seems like her right leg is asleep, so she just drags it with somewhat of a locked knee. Her eyes seem a little crossed and at times she seems dazed. I can't say that she is any worse, but still not much better. Her face looks puffy and her belly bloated. Hopefully we will see improvement from now on. I've heard that symptoms can get really bad before they get better and I don't think Sophie is as bad as some of the cases I have read about. Please pray that we only see improvement from this point forward.

I want to take the time to thank some people what have been raising money for the Smiles For Sophie account. The owner of Sophie's preschool organized a raffle that I had no idea about until I received the following mass email from the ALPPTA of which I am a member. I'm sure the person responsible for sending emails didn't think to exclude me from the over 100 members who she was sending it to.

Smiles for Sophie Raffle Tickets!

Just a reminder for all of those interested in purchasing a raffle ticket to help Sophie Quayle, Carroll Middlemiss will be selling Smiles for Sophie Lottery Raffle tickets at the next general meeting on Monday, March 12, 2007. Carroll will be at the library beginning at 6:30 pm and will have a table set up as you enter the Gallery Room of the Library. Price of the tickets are $10.00 each with the opportunity to win $50.00 every lottery day in the month of May, 2007. The winning ticket is determined by the Ohio Lottery three digit number drawn each day. Cash or checks will be accepted.

100% of the profits are going to benefit Sophie Quayle and her family! The goal is to raise $9,000 to assist the Quayle family. As always, your support is greatly appreciated.

I would also like to thank the Riverview Community School District for raising money for us through their "dress down days" and especially the high school for raising over $3000 with the jar wars. We are so grateful and so humbled by the outpouring of love and support by those of you who we know, and by those of you whom we've never even met. Thank you thank you.

Marc and I have been reading way to much on the web about all the families that have been through, or are still going through the same horrible journey that we are. We have now joined the ranks of those parents who are appalled at the lack of research being done on this type of cancer, and feel so helpless and angry about the prognosis we have been given. Please tell everyone you know about this tumor so that maybe somehow, something will be done. Please continue to pray for Sophie's miracle and for all the families who are facing this horrible diagnosis. We thank you as always for remembering us in your prayers.

One more note; many have asked if we ever found the girl who needed a package. We haven't. Say an extra prayer that we may see her again in the mail line. We plan on carrying her package with us everyday when we go to the hospital until we see her again.

Monday-Thursday are very busy days for us, but I will try to update as I can. We appreciate the support from those of you who are committed to following us on this journey. Pray today for Sophie, and for all the other BSG patients who are hoping for a miracle.