Long overdue...

I realize it's been a while since I last updated. Being home has kept us all busy. Taking care of the girls is a full time job, and when you add appointments and laundry, thank you notes, and trying to keep things under control, few spare moments remain in the day. Each night when I lay down with Sophie, I plan on getting back up as soon as she falls asleep so I can update, but usually, I don't wake up until Sophie is telling me she has to go potty, and by then it's at least 11:00, and I'm content just sleeping!

Aunt Leslie and Uncle Jacob were so generous in paying to have our house deep cleaned. It needed it, and we are so grateful. They also arranged to pay to have our house cleaned 2 more times over the next month or so. Thank you guys!

About two weeks ago, Sophie was having some bad headaches and neck aches and was throwing up again in the mornings. Walking was difficult and she seemed a little off balance. She was not much in the mood for eating, so we were concerned. We contacted Dr. Gajjar in Memphis and he recommended bumping her steroid dose up from 1 mg a day to 2mg 3 TIMES a day in order to get the swelling under control. (He still feels fairly sure that the swelling is from the radiation.) We thought 6mg a day was too drastic of an increase so we opted for 4 mg a day in an effort to control the pain and throwing up with as little side effects as possible.

Sophie's symptoms responded well to the increase, but unfortunately so did her appetite. She is back to wanting to eat non stop and when I took her to the local oncologist on Wednesday, she weighed 45 pounds. When she was diagnosed, she weighed 36. Her doctors said she looked better than she did two weeks ago, and that she was showing improved muscle strength.

We gave her the 4mg a day for 8 days, and as of Thursday, decreased the dose to 3mg a day. Her personality and mood do not seem to be affected by the increase in steroids. We have seen many smiles and heard a lot of laughter lately. (And her smile is improving too.) She did seem more tired today than she has in the past week; we are keeping a close watch on her. Hopefully she is just tired from the long walk and picnic Aunt Leslie took her on Friday!

We started back up on the chemo about 12 days ago. We didn't realize that this course would be an increase from 175 mg daily to 300 mg daily. She is tolerating it well; the only side effect she complains about it being "itchy". We are continuing to give her as much of the herbal and alternative remedies that we can get her to take.

We finally had the visit from the in-home PT who did an evaluation. I was happy that Sophie was a lot more successful with many of the "tests" than she was in Memphis. We're hoping that we can continue to strengthen her muscles through the PT and OT so as the radiation continues to work, her right side weakness will improve.

She also had her bi weekly blood draw and port flush here at home by the home health care nurse. I thought that maybe being at home would make the experience better for her, but I was wrong and quickly taken back to the Monday mornings of "port access" while at St. Jude. She was a tiny bit comforted knowing that we won't have to do this again for 2 more weeks. She still HATES it.

Tomorrow we are going to Florida to visit with Aunt Sarah and Uncle Matt. Grandpa is making the flight down with me and the girls, and Marc will be joining us on Thursday for the holiday week end. We are looking forward to being in the sunshine, and hope that the warm weather will distract Sophie from the feeling of constantly being hungry.

Thursday Megan McNamara and I were treated to a 60 minute facial, compliments of "A Time to Spa" in Olmsted Falls. We are so grateful for the wonderful gift of relaxation. We both felt guilty escaping the reality of life, if just for an hour, but are so glad we did. The spa was wonderful, and so generous. If you live in the area, and are looking for some pampering, check them out, at atimetospa.com This morning, we were able to take Maria and Sophie for complimentary mini manicures, and then out to breakfast. We enjoyed our girls morning out, and again want to thank Lisa and her staff, for their kindness.

We continue to ask for your prayers for Sophie's miracle and also for prayers for all the other kids and families fighting this battle. We have good days and bad days, but the battle definitely doesn't get easier. It's the fear of the unknown that can quickly make you shake your head after smiling in admiration when Sophie says something so cute and "Sophie-like". Just wondering how much longer I will be able to hear her say those things is enough to make my heart sink, when all I really wish I could do is enjoy her. We take each day moment by moment, because we know that when we allow ourselves to worry about the future that the feeling of helplessness sets in. We continue to ask for God's grace to help us through, as we place our trust in Him.

I hear Sophie calling me, so I'll close for now. I will try to post more often, as I know many of you anxiously await for updates. We thank you for your prayers and kind words.