No news is good news?

Well, it’s almost been a week since I returned home to Florida and it sure is quiet around here. I talked to Emily last night and she asked me to post another update. I know I can’t quite say things like Emily does, but I know so many of you check the site daily, looking for any news on Sophie. I will try my best to provide this update.

The last time I was at Emily’s was last Tuesday and then before that on the previous Saturday. Saturday, Andrea, Aunt Margaux, and I spent the day with Sophie and Sarah so Emily and Marc could get out for a bit. And that day was a great day! Andrea, Sophie, and I played with her dishes and food three separate times and she even laughed a little as Andrea and I did our best to be crazy and brighten her day. It is such a wonderful thing to see…when Sophie laughs! She does tire very easily and really would prefer to sleep with Emily, but I did manage to get her to take a little nap with me while Emily and Marc were gone. As Emily described in her last post, Sophie is so loving. When I walked in that day she was reaching out for me, wanting to hold my hand and give me a hug. Then as we lied in bed, she continued to reach out from under the covers for my hand. She always wants to have somebody sitting right beside her, most times holding hands with whoever it is. Although she is going through so much and has changed so much physically, that big heart of hers hasn’t changed a bit!!

As for her symptoms, like Emily said last time, they remain relatively unchanged from day to day. The one thing I really noticed when I came back that Saturday after having been up in MI for about a week prior was that her weight seemed to have decreased significantly. Lifting and carrying Sophie is difficult, as she was up to 54 pounds, but also because she really can’t help much at all. Since she only has the use of her left arm, she can only grab on around your neck and doesn’t always even do that much. Her trunk control is still shaky so you have to have a good hold on her. But I noticed she was much lighter than the last time I was there. Of course that is attributed to her decreased eating and weaning of the steroid. She has a lot of difficulty with eating, as she can’t really feel food when it’s in her mouth and it often gets “lost” in between her teeth and lips. She continues to signal she is hungry throughout the day by rubbing her tummy, but only really eats about 1-2 bites before getting too frustrated to keep trying. Emily has mostly been trying soft foods with her, like mashed potatoes, Jell-O, softened Life cereal, rice, and even tried to give her Sarah’s baby food, but Sophie was too smart for that. Emily told her it was just mashed up pears, but Sophie wanted nothing to do with it. As before she has good days and bad days with the vomiting. The couple days I was there, she didn’t get sick at all, but then she has days where she not only vomits in the morning but many times throughout the day too. Sophie would prefer to stay inside but Marc and Emily have continued to get her out for a walk on most nights.

Treatment wise, from the conventional medical front, Sophie had an appointment with Dr Jacobsen, her initial oncologist from Rainbow Children’s and Babies Hospital in Cleveland. It was July 25th the last time Dr Jacobson saw Sophie, and after evaluating her, he confimred the progression of the tumor by the onset of the symptoms, and told them that he would be happy to see her as much as they would like, but as always, told them there was nothing from the medical standpoint that he could do to help Sophie (cure her tumor). They have not done any additional MRIs and don’t plan to at this point. They were told that there are many risks involved with sedation when a patient gets to the point in progression where Sophie currently is. They also discussed the nutrition issue with Dr Jacobson due to Sophie’s decreased food intake. His opinion was that she still has excess weight to sustain her (she weighed 48 pounds) so a feeding tube was not recommended - again because of the risks. She still needs nutrients but is not getting them by eating, so Emily bought some Ensure to hopefully keep Sophie as healthy and nourished as possible in order to help keep her strong to fight this tumor.

Emily and Marc continue to pursue any and all alternative treatments that may lead to Sophie’s miracle.

Having been there for about a month and witnessing what Emily and Marc go through everyday, the care is very physically and emotionally exhausting and demanding. Marc’s parents spent Labor Day weekend with them and my parents and I went home to MI. Leslie also came for a couple days during that weekend and Marc’s parents have been back again. Emily and Marc have been trying to make arrangements so the help stays for just a few days at a time, or even just for the day, like her friend Andrea. It’s hard for them to have people always in their house, 24/7, but the help everybody provides is much needed. Aunt Margaux has been a Godsend with baby Sarah. Although she started back to work after Labor Day, she still comes over most days after work and for a few hours on both Saturday and Sunday. Baby Sarah loves the walks and the many trips to the park with Aunt Margaux, and it gives at least Emily or Marc a slight break at home. Emily has arranged for a hospice volunteer to come in two days a week for a couple hours to play with baby Sarah as well. They are trying to find other sources of help so the parents don’t have to commit to all day everyday for days and weeks at a time. It’s hard, but everybody is doing their best to give Sophie all the support and love that she needs.

Finally, as a reminder the Kiddie Carnival is coming up at Holy Spirit church in Avon Lake on September 29th. It looks as if it’s going to be another wonderful fundraiser for Sophie and, as always, Emily and Marc are truly grateful for the generosity and support. They have truly been blessed with such wonderful family and friends who have gone above and beyond to help them provide every option to fight Sophie’s tumor. Please continue sending your prayers and love their way!!

Love,
Sarah

Now it is me, Emily and I am continuing this post that my sister started 2 weeks ago! She wrote the post, and all I needed to do what read it to make sure the facts were straight and I haven't even had a chance to do that! Since I am at the computer I will take a few minutes to update on Sophie and her treatments and condition.

Sophie completed 45 of the "alternative chemotherapy" DMSO treatments that we started in Tulsa. Thursday was her last treatment, and although her blood work was good enough to continue, we decided that we, and Sophie, had given that course of treatment her best shot. We did not see the results we had hoped we would. So of course we were disappointed. When we were told that most patients see some results as early as treatment 6, but on average 19 or 20, we felt at peace with the decision that 45 treatments gave it a fair chance to work.

Right now her condition really hasn't changed, but like I was telling my friend Andrea, there isn't much else that can change at this point. She can't walk, talk, use her right side arm or leg, smile, see with her left eye, laugh, sit without support, hold her head up, and as of late has been having increased difficulty chewing and swallowing. It sounds negative, and I'm not trying to be, but really there isn't much to say about her physical appearance that would be positive.

Her lung sounds continue to be clear, and for that we are grateful, hoping that we will be given more time to find the method to Sophie's miracle. Right now we have a PER machine here from California that we are using 4 times a day for 12-20 minutes. The machine has been shown to put cancer cells into remission by normalizing the voltage of the unhealthy cells. We started this last Sunday and haven't seen changes in Sophie's physical symptoms but overall her appetite has been better, and it seems like she can open her mouth a little wider when she isn't so tired, and get some food with a little more substance down, and keep it down. Thursday she managed to eat a half a piece of pizza at one sitting and she's eaten some small bites of chicken too. Her vomiting has been better so maybe the pressure is stabilizing. She typically goes a few days without getting sick. I was thinking the other day how sad it is that we must sleep with bowls in our bed just in case, as well as carry one from room to room and in the car. Poor Sophie.

At times her energy seems better and she'll be interested in stickers or a book, and lately she's wanted to watch some TV again, but mostly she prefers to be in my lap getting a foot rub and holding hands. Her nights have been better as she seems to be sleeping more soundly. Instead of waking up 4-5 times a night, it has been closer to 1 or 2 the past week. Although she has been steroid free for over a month now, she seems to be having some of the attachment issues that we thought were all related to her being on the steroid. She only wants me to do everything for her. It can be frustrating for me, but also for those who come to help. It would be easy for a visitor to simply ignore Sophie, but my parents continue to talk to her and try to engage her in some type of activity. Just this morning my parents arrived with all sorts of princess and Halloween stickers and crafts! So my parents and Marc's parents, Margaux and Andrea continue to do all the things I cannot do because I am with Sophie. Things like care for Sarah, cook, clean, laundry, grocery shop, yard work, decorate my house, run errands and just about anything else. For that we are both so grateful. This has also given Marc the ability to continue to work and stay current on the things that are happening with his job.

We have been taking Sophie outside each day, and although she resists by shaking her head a little and moaning and pointing to the house, we still do it. The weather has been absolutely gorgeous so we are making the most of it before it turns cold.

We received word today that Marc's grandpa Bill Quayle had an MRI because he was experiencing shortness of breath, pain near his ribs, and swelling. The MRI showed cancerous lesions on his spine, with a preliminary diagnosis of bone cancer. We should hear more test results later this week. Please pray for Grandpa and that there will be a course of treatment that will cure him.

Dr. Jacobsen had the nerve to tell us that we have a couple months at best left to spend with Sophie. And I say nerve because I want so much to prove him and all the doctors wrong. Please please continue to pray for a miracle that will make Sophie healthy and happy once again. Actually I want her to be happy and feel good. Andrea and I took Sophie to the Disney store this Sunday hoping that she would enjoy shopping for just about anything she wanted. And because she can't talk, or smile or show emotion I just wasn't sure she was loving it. Andrea told me, "I bet she's happy on the inside." And that is what I really want most for Sophie; happiness. So I try to go through the day stopping to hug her and cuddle her when she reaches out for me as I walk by with a load of laundry in my arms. I must remind myself right now all that matters is my precious little innocent girl who is going through more than anyone should have to. I can't help but feel so bad for her.

Again, we thank you for your continued support and prayers, especially to those of you who do the unexpected; surprising us with mums and fall decorations - thank you Wassim, Stepahnie and Tiffany, bringing us dinner, sending us cards, planning fundraisers, making donations, and even more thanks to those of you who do what we need most, and that is sending prayers and happy positive thoughts our way. I often wonder how we would have ever survived thus far without all the love and support we have been given. Thank you and God bless you.