We're back in Avon Lake after visiting Aunt Sarah and Uncle Matt in Florida. It was quite an ordeal; from our Sunday night flight out being cancelled (after my Dad and I were in the airport with Sarah and Sophie for 4 hours and then we were re booked on the 6:30 am flight Monday morning) to Sarah sneezing on the plane and consequently getting all of us sick while we were there, to Sarah catching a staph infection on her skin (most likely from the water in Florida), to Marc deciding to head back to Avon Lake with Sarah on Sunday instead of Tuesday with us so that he could get her to the doctor!!!! Never-the-less we still had fun, and Sophie got to spend some time at the beach and enjoying the Florida sun because the weather was perfect!!!!
We are hoping our trip back to Aunt Sarah's at the end of June (after her baby is born) will be a little less eventful.
While in Florida we began the decrease in Sophie's steroid dose. By the time we came back, she was down to 2 mg a day, but her appetite was still insatiable. I took her for her bi weekly appointment with the oncologist and neurologist here at RBC on Wednesday and both thought that from a neurological standpoint she looked better. Her weight was 48 pounds, which is obviously very concerning. Her blood pressure was high, (as it has been during the use of the decadron) and at times she seems to be breathing heavy. The doctor told me that this is due to the increased weight, and compared it to being at the end of pregnancy after gaining the average 30 something pounds, because percentage wise, Sophie's weight has increased by 30% which is comparable to an average pregnancy weight gain. I know how I felt at the end of my pregnancies, so now I am able to better understand why Sophie doesn't want to walk, why she is content just sitting and doing activities at the table, or watching TV. It breaks my heart because I know she needs the exercise but I understand how difficult it is for her to stand up, bend over, etc. because of her muscle weakness due to the tumor, but now also because of the tremendous amount of weight she has gained.
On Wednesday were given the okay to reduce the steroid further to 1.5 a day for a week (if she tolerates it) and then to 1. She hasn't had any headaches or vomiting, but she has been more tired. We are hoping this is a side effect from "coming down" off the steroid, and not an indication that she needs to go back up to 2. We still haven't seen a real decrease in her appetite, but we are hoping to, so that she may be able to enjoy the nice warm weather we have been having.
She finished up her 3 week cycle of her chemo, and she has a week off before she starts another 3 week cycle. We will wait to see the results of her July 2 MRI to decide if we can and/or will continue with the Zarnestra trial.
We have established a "sleeping schedule" so that I can count on a few good nights of sleep (if Sarah doesn't wake up) and also so that Marc can share in the bonding experience that I have when I lay down with Sophie at night. Grandpa even has a day - Wednesday, and even though if Sophie had the choice, she would choose to sleep with me, she has been receptive to the schedule. It's strange, now when it's my turn for a break, I have a hard time falling asleep without her!
Sophie had her first PT appointment here at the house. It was a good workout for her, and she fought back tears at some points. It's so hard for me to force her to keep going when I see the pain and anxiety in her eyes, but she did it, and hopefully she'll do better next week now that it is not so new. The therapist is bringing a colleague with her who will make a cast of Sophie's leg (she doesn't know this yet, and I am nervous to tell her) so that she can have a brace make to help her with her stiff-legged walk. The PT mentioned this to me during her initial consult, and so I asked Sophie's neurologist her opinion on Wednesday and she thought it was a good idea, so she wrote the prescription. We're hoping that this will allow Sophie's leg to become used to walking in the correct posisiton as she continues with the therapy in order to strengthen the muscles. I know she is NOT going to want to wear it at all. We battled with the glove that she was to wear at night, and I know this will be a battle as well. Insurance will pay for 6 in home PT visits, and then we can request more if we can prove that Sophie needs it and/or that she is making progress.
Now it's almost been a week since I started this post, and I'm finally finding time to finish it now that I am back in Florida with Sarah and Matt because little Zachary decided to come 3 weeks early! Everyone is sleeping, so I have some computer time.
Sophie continues to be the same symptom wise. She hasn't had headaches or vomiting, but remains the same in terms of her limp, right side weakness, and difficulty smiling on command. She can smile when she is laughing, or happy; the neurologist informed me that we use different muscles to smile on command than we do when we are laughing, so that explains that. Her appetite is slowing a little, and I mean a little. She is still quite lazy, for lack of a better word, and getting her out of the house to do anything can be hard - unless of course it involves going to a restaurant! Recently I told her that she has to take 2 walks around the cul-de-sac per day. She has been complying, but not without complaint.
We are still giving her 1.5 mg of decadron daily. We planned to reduce it to 1/day on Thursday, but thought it might be best to wait until I am back home on Monday.
A huge thank you to the IHM community in Cincinnati for the walk-a-thon fundraiser last Saturday. We continue to be humbled, and overwhelmed by the love and support from people both near and far. My parents drove down Saturday morning and had only wonderful things to say about the people and how organized everything was. I know Lisa Nicholson was the brain behind it all, and if I tried to thank others, I would inevitably forget someone, so a general thank you to everyone in Cincinnati, especially the IHM parishioners and my wonderful CRHP sisters who I miss so much. I love you guys.
We have been plugging along. Some days are better than others, but there are times when I find myself really missing the old Sophie. The innocent little girl with the smile, who wanted to spend time outside and go places with me. It's times when we do things that we used to do, when I realize how different she really is, and mostly I feel angry that she has to go through all this. I wish all she had to worry about was what we were going to play next, but instead she worries about how many "appointments" she has, who is coming to the house, how many bites of applesauce she has to take today, and how many more days she has until she has to get her blood drawn again.
Her fourth birthday is coming up on July 4th. We were talking about what kind of party she would like to have. At first she was set on Winnie the Pooh, then it was Backyardiagns, and now we are back to Dora (which she had last year). When I told her that she couldn't have the same theme two years in a row, she told me, "It's okay Mommy, I'll have Dora this year, Winnie the Pooh next year, and then Backyardigans the next time." My prayer is that she'll be around for many more birthdays, and that her only worry is what theme we should have for the party. I know the statistics aren't in my favor, so we keep the faith and keep praying for her miracle, and we ask that you do the same.
Thank you for your thoughts and prayers.
