Ways You Can Help...

The other night when I posted I forgot to mention a couple things that I intended to include. As a parent watching my daughter fight this battle I have this incredible urge to do something that might help another family with a terminal child. Unfortunately because of the amount of time I have spent caring for Sophie in the past six months, I haven't been able to get up and running with my ideas. Many people have asked me many times what they could do to help, and I usually don't know what to say. Or I have had many people say, "I wish there was something I could do." Now there is! I am doing my best by giving all you wonderful and caring people an opportunity to help and raise awareness through the efforts of some other parents who have fought, or are fighting this DIPG battle. If everyone does one small thing, it could turn into a big step in finding a cure so that no other family will have to go through this. Honestly, I wouldn't wish this on my worst enemy...that is if I had any enemies!

The first way you can help is by visiting www.prayersfrommmaria.org and purchasing something from he gift shop or making a donation to help support their cause in fighting gliomas. Or you can visit www.thecurestartsnow.org and donate to their DIPG fighting fund or find other ways to help. Or, for those of you who like to buy things for other kids, visit http://www.helphannah.org/Page.aspx?id=19 and read about a family who is collecting toys for Christmas in honor of their daughter with a DIPG. Their goal is to collect 1000 toys to distribute to kids through their hospice organization. Since I'm not organized enough to raise awareness on my own, I thought the least I could do was pass this information on to all of you.

So how is Sophie? I wish I had a better answer, but we've actually seen some decline the past few days. She is having more trouble swallowing liquids; to the point where she coughs with each attempt at a small sip. I have been using a straw to drip small amounts into her mouth, and this seems to help a little. She still has a good appetite which bothers me because I wish she could just take a big bite of a chicken nugget like I know she wants to. She's been surviving on jello and softened Life cereal. It takes about 45 minutes of small bites on a baby spoon to get a 1/4 cup serving through the centimeter gap between her teeth. At time she thinks she is opening her mouth, but her teeth will be clenched shut. We may have to revisit the idea of the feeding tube so she won't have to suffer the feeling of being hungry.

She has been taking more naps in the last couple days, and sleeps pretty soundly when she is sleeping. Her nights have been better; although I am not sure if that is a good thing. At times I look at her and she seems to be staring off into space, and I have to repeat myself many times before she will answer me with a nod or a thumbs up/down. Marc says it is like she is trapped inside her head. I think of all the things she would be saying if she could talk, and it makes me realize that I can hardly remember what her voice sounded like.

She has been interested in books lately, and will sit and listen to a few stories at a time. This makes interacting with her a little easier, because for the most part it's hard to find things to say to her. Have you ever tried to carry on a conversation with someone who couldn't respond? Aside from reading, I have been singing little songs to her and telling her how much I love her. I also tell her about all the other people who love her too, and sometimes I share silly stories about baby Sarah (who we all call Yahoo). I try not to say too much because I'm not sure if Sophie feels sad that Yahoo can run circles around her and do way more than she can.

My parents took Yahoo home for a couple days and it's been very quiet around here. It makes this whole ordeal even more sad when I look at my 4 year old who should be making a racket, yet she sits in silence with her head slumped over as though she is not there. I continue to use the PER machine with Sophie because I haven't given up on her. I still believe she is not in pain and that is the best thing. Our hospice nurse canceled our visit on Thursday because of an emergency so I don't have a report on her vitals. We should know on Monday if everything still sounds good.

Please continue to pray for Sophie; that she may be pain free and if it's not too much to ask that this horrible tumor be removed from her little head! We thank you for your support and prayers.

Cut-A-Thon at Enzo's

Posting the flyer has been a bit more difficult with this one due to formatting issues, but I wanted to be sure to get the information on Sophie's site so you all would know about another upcoming fundraiser.

What: Cut-A-Thon

Where: Enzo's Salon and Spa
32848 Walker Rd
Avon Lake, OH
440-933-3669

When: October 7th, from 12-6 pm

Details: Enzo's staff will be offering haircuts and styles, eyebrow waxes, chair massages, and hand and arm massages.

There will also be several items up for raffle.

Swingo's Tavern will be there to make sure you don't go hungry!

Services will be provided on a walk-in basis.

There is no minimum donation but 100% of the proceeds will go directly to the Smiles for Sophie Fund.

Thanks to DJ Victory, the owner of Enzo's, and the staff at Enzo's for donating their time and talent to help Sophie. Thanks also to Staci Starr for getting Enzo's involved.

I know there have been some people asking about donating items, so if you can't make the cut-a-thon, but would like to donate items toward the raffle they will be having, please contact the salon at the above number.

Thanks again to everyone for your generosity and support.

Love,
Sarah

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.

Kiddie Carnival

Here is the latest information on an upcoming fundraiser for Sophie in Avon Lake. It is a Kiddie Carnival on Sept 29th, from 11-4, at Holy Spirit Church. The flyer for the carnival is above and is also posted in the events section on the right side of this page. Many thanks to Kim Walters, Elizabeth Gedeon, Andrea Bucci, Staci Starr, Michelle Polinko, Stacey Green, the Holy Spirit Parish, the Avon Lake Preschool PTA, and all other volunteers for putting this fundraiser together. Again, the outpouring of generosity and support for Marc, Emily, and Sophie is truly amazing!!

Love,
Sarah

6 Months and Counting

It seems that time gets away from us. Quite ironic because the one thing I wish I had more of right now is time. This picture was taken exactly one year ago, and I can't even begin to imagine how things would have been different had we not been thrown this "curve ball" (as my brother says.) Sophie should be back at preschool...

On a day to day basis, it seems that Sophie's condition is unchanged. But then when I stop to think about how different she is from 2 months ago, it's obvious how the tumor is progressing.

I want to remain positive so posting these facts and symptoms is hard. Regardless of how she is digressing, we ask that you continue to pray for her in hopes that she will still receive her miracle. Fr. Beatty came last week and anointed Sophie again, and we had a mini first communion service. Unfortunately Sophie didn't take the communion, but we still have it here waiting for her to let us know she is ready.

I am still exploring other alternative options, but again, time is not on our side, and so far most of these other options have the same track record as the current conventional protocols that are available.

I have been trying to get Sophie to use a communication board to help me understand what she is trying to say. The social worker from hospice gave us some generic cards to use and then my sister Sarah and Andrea took pictures of things around the house. Sophie still continues to try to talk, and gets frustrated when I don't understand her. She has recently tried to use the pictures a little more.

Symptom wise Sophie is having a very difficult time chewing and swallowing. Her appetite has been better so it is hard to watch her struggle to eat. She's actually gone a few days here and there without vomiting but then the nauseousness comes back without warning. She has resorted to the use of pull-ups (although we still call them "sleeping underwear.") Yesterday I asked her if she can tell when she goes to the bathroom, and she said "Yes." I then asked her if it is too hard for her to sit on the potty and go and again she said , "Yes." Her balance and core strength have been affected and she dreads having to "stand" while getting her pants pulled up.

The hospice nurse came on Thursday and said that Sophie's lungs are still strong and her vitals are great. A positive thing to hear; we just need the rest of her to cooperate!

On Monday she finished her 18th treatment without the steroid . We are waiting for blood work to see if we can continue with 18 more treatments. We haven't really seen the kind of improvement that we have hoped for, but want to continue in hoping that maybe we will break through with these next 18.

I am thankful to God that Sophie has not been feeling any physical pain. I repeatedly ask her everyday if anything hurts, and she shakes her head "No." I'm sure it's hard for her emotionally though because her mind is perfect and trapped in a body that doesn't do what she wants it to do. From a mother's perspective, it is literally like watching your daughter be tortured; the only comfort that gets me through is that it doesn't appear that she sees it that way. It's hard to know what she really understands. I like to think that she is being comforted by Jesus each step of the way.

The last few days the weather has been beautiful and Sophie has agreed to go on walks, bike rides, and mini outings with Marc and this has been a blessing. It gives me a little break and I know the sunshine is good for her. I have a harder time convincing her to go outside...maybe because I haven't wanted to make her do anything she doesn't want to do. Although we actually did take a short trip to Bath and Body Works tonight to buy some antibacterial soap! How easy I forget.

Sophie has been so loving lately; she wants to hold my hand and be near me as much as she can. I tell her I love her and she squeezes my finger to let me know she loves me too. And even though her ability to smile is gone, every now and then I will see a twinkle in her eye and I'll know she is smiling.

Please, please continue to pray for her and for our family. We need God to bless us with a miracle, and we need it more now than ever. Thank you all for your continued love and support. With God, all things are possible.