Still the Same

Many people have been asking how Sophie is doing since my last post. We are answering with "About the same," because in some ways she seems better, but then new things are coming up.

Her personality is the same. Still generally happy, but tires easily. Grandpa says it is because they play so hard during the days. Friday, Saturday and Sunday night she complained that her neck hurt. That was concerning. She pointed to the area at the top of her spine; even more concerning. If we question her, she will say it doesn't hurt. I think she can sense our anxiety.

She also has been sleeping fitfully again. Last night she wanted to get up for the day at 2:00am because "it hurts to sleep." She didn't remember saying that this morning.

Her new favorite thing is for me to "stretch her." This is a good thing because she needs that range of motion in her right arm and leg. I am really having to pull to flex her right foot and straighten her right fingers and thumb.

On the up side, Papa came last night and this afternoon brought Sophie a few flowers to plant outside...that has been her latest obsession..."when can we plant flowers?" He also played outside with her for a long time. I think he was more tired than Sophie! She can be pretty demanding! Grandpa also arrived and took the girls to the park with Marc while I went to the dentist; again. Sophie has been playing pretty well with Sarah. It is so cute to see. She does get protective about her stuff...in true big sister manner, but the other day they sat and played with Sophie's kitchen stuff for a while with no adults "helping." Sophie did a lot of walking at the park, and bending down while planting, so at least she is still moving.

She is wearing the glove at night for as long as we can get her to keep it on; it doesn't fit her perfectly, so we will ask at St. Jude about getting a new one that stays in place.

I want to thank all of you who are making comments to the blog. I always forget to mention that we find tremendous support in knowing people are praying for Sophie everyday.

We, of course, continue to be anxious about Thursday. We are trying to be realistic about what the MRI might show. One, the symptoms could be a result of all the radiation and prayers causing swelling because the tumor is dying off so fast. Two, the tumor is getting bigger and the radiation didn't work. Or three, there is a secondary tumor somewhere else. We are hoping, praying, and begging that option number one is behind all this.

When Sophie was first diagnosed we asked ourselves "Why?" over and over, but then accepted the burden we were asked to carry. Now we find ourselves again asking "Why?" "Why isn't she back to normal?" This time, we are trying to remain hopeful that the "back to normal - at least for the summer" that we were promised will still happen. It is hard to look around and realize that for most DIPG kids, radiation does give them back some good time. The guilt of putting Sophie through all of the radiation drama and the trip to St. Jude for possibly nothing is really wearing on me.

Again, we ask for your prayers and thank you for your support.

Keep the Prayers Coming

Just a quick request for more prayers. It's hard for us to tell if Sophie is doing worse like it seems, or if her body is adjusting to being home and going non stop.

Her limp and stiff leg are more pronounced, as is the weakness in her right arm and hand. She has gone back to mostly crawling up the steps, and she wasn't able to smile as big this afternoon. She is also having trouble with her balance.

We went from giving her the steroid every other day, to every 36 hours, now every day. We are hoping that she is just tired and these symptoms aren't indications of the tumor.

Please say an extra prayer for her today, and all this week until we head back to St. Jude when we will need even more prayers when she gets the MRI. We are anxious and nervous.

We are glad to be home!

We are home and have been going non stop. Every night, I tell myself that I need to post an update, but then I get distracted by one thing or another and I don't get around to it. I can't wait any longer!

It's been awhile since Marc updated, so I'll try to remember all that has happened in the past week.

Marc left late Wednesday night and drove to Louisville and then drove the remainder of the trip on Thursday. We wanted him to beat us home since the car was literally jam packed with all of our belongings, and the plan was he would have everything unloaded and put away before he picked us up from the airport Thursday evening. That was a joke! We had so much stuff that he could barely make a dent in it....we are still putting things away! My parents and my sister brought little Sarah home to Avon Lake from Michigan on Thursday night and we were all so happy to finally be together. Sophie let my sister sleep with her, and it felt good to sleep without getting kicked in the ribs, and be waken to go potty.

Regardless of the mess we brought with us, our house looked great. Emily Stover (the wife of Geoff Stover - one of the unit managers in Marc's district) had come here and washed and changed all our sheets, decorated the house with streamers, balloons, etc. and stocked our fridge and pantry with groceries, chili and lasagna. What a nice surprise! We are so grateful Emily.

Our last 2 radiation treatments went off without a hitch. Thursday's treatment was a little emotional for me. After Sophie was hooked up to her IV, and I carried her to t he radiation table, we were greeted by the staff with balloons, a T-shirt, and presents for Sophie. The shirt and balloons said "Operation Radiation: Mission Completed" I was happy that we were just about finished with the 31 treatments and able to return home. At he same time, I was so sad about the realization that we've completed the "standard treatment" for Sophie's diagnosis and that there is "nothing more that can be done" and we are headed home and her disease is not cured. I try to focus on the positive and hope for that miracle, but when I see Sophie and her symptoms still present, I feel that sense of hopelessness and feel so helplessness. Dr. Krasin and Dr. Gajjar gave us the okay to drop the steroid completely once we went home, so we were happy about that, but also nervous.

Our flight home was great. I was able to see the difference in Sophie's personality and stamina on the flight. This time around she was asking all kinds of questions. She was very interested in the "what to do in the event of an emergency while on board card." She pointed to the person in water, and her eyes got really big when I explained to her what we should do if the plane landed in "a lake." (I didn't want it to seem too scary.)

So Sophie's personality is still good. Anxiety level is still high, and she is nervous in new environments. Her walk and weakness are still very concerning. Friday Sophie and I got on the road yet again to head to MI for my sisters shower, while Marc stayed home to work on the mess and take care of Sarah. Saturday morning, I could see that Sophie's balance was off. About an hour after waking she said she had to throw up; this was obviously scary, so we gave her a 1/2 mg dose of the steroid, and we did the same again on Monday. We will continue with the "every other day" plan for about a week and then see how she does.

Saturday morning was the Trenton garage sale and Saturday night was the Euchre fundraiser also in Trenton. Again, words seem inadequate as a way of saying thanks to all those people on Lenox Rd. who worked so hard, and gave their time, talent and energy organizing and/or running these events. Libby, Joanne, Michelle, Karen, Susie, Shelly, Sandy, Jim, Tony, Joe, Al, and Kim. Also many thanks to my Uncle Joe, Aunt Patti and Uncle Rich for their help in planning and helping out, and for their continued support. I know it was avery long day for all of those involved, and we appreciate your dedication to our cause. There were a lot of great prizes that people won and those in attendance seemed to be having a great time. I was only able to stay a short time because Sophie was at my Mom's having a high ole time with my friend Andrea, and I had to get back to put her to bed. Thank you Mr. Nick's for allowing us to use your facility and for donating the hot dogs and fries. Uncle Joe had "Smiles for Sophie" shirts made for our family and for those involved in planning the fundraisers, and many many people asked how they could get one. My sister and Andrea are working on ordering more and making them available on the website if people are interested in purchasing one. Information will be available in a future post.

Denise and Sam Irving, friends of my parents, sold raffle tickets, giving the winner a boat excursion to Duffy's in Canada for dinner and drinks for 4! We are so impressed by their generosity and willingness to share their boat with others to benefit Sophie. They raised over $4000 selling tickets. We are so grateful.

Sophie had so much fun at my Mom's playing with Grandma and Grandpa over the week end that when it cam time to leave on Sunday, she didn't want to go home with me! She asked if she could stay, and Grandma and Grandpa said okay. It was a strange drive for me on Sunday; I hadn't really been alone in a car for a long time. I thought about what a gift children are, and what a big responsibility I have. I thought about the Mom in the "Babies R Us" parking lot on Sunday (when I helped my sister return some duplicates) who was telling her little child, "Hurry up you crybaby." I tried to focus on the positive things and not ask myself the question, "Why me?"

So of course it was emotional, and easy for my mind to wander. I again realized how blessed I am, but begged God to make Sophie okay and grant us this miracle. As for Sophie's overnight stay, I know she had so much fun, and I'm grateful my parents are willing to keep helping us out. Grandpa brought her back Monday morning, and he is still here helping out while Marc gets back to work.

Tuesday Sophie had an appointment at our pediatrician for a follow up exam. He said that she did shoe improvement in her smile, but that her right side still shows weakness in her face, arms and legs. We are praying that the radiation will continue to work. We ask that you continue to pray for her; when I look at her, she is nowhere near the "back to normal" that many people told us she would be when radiation ended.

Yesterday morning was my first attempt in giving Sophie her the alternative therapies we ordered. She could not swallow the pills. I tried making a smoothie; she didn't like it. And then I tried breaking the capsules into applesauce; that seemed to work, but then she threw it all up. I told myself that I can't stomach the thought of 6 pills, and that we'll try again soon. It's so hard to know if the struggle is worth it. She did wear her thumb splint for a few hours the last few nights; we'll take a few hours, and hopefully we'll get her to wear it all night.

Thank you again to those of you helping with the fundraisers. The Trenton ones were amazing; I haven't heard the outcome of Little Gym one yet; I know they have one more night on the 27th, but gauging from the reputation of those involved I know it will be another unbelievable show of support.

We go back to St. Jude on May 2, and have an MRI and exams on May 3. Please keep us in your prayers as we await the results of our first follow up. I'm hoping to post again before then, but being back home has kept us very busy with appointments and all the responsibilities that go into running a household; something we had forgotten about in our apartment life in Memphis. I am officially way behind in my thank you notes, as the piles on the dining room table get bigger and bigger. Please know that we are so grateful to those of you who are so generous.

We are grateful to Kim Walters for organizing a list of volunteers who have graciously offered to make us dinners on a MWF schedule from now through October!

I could think of a hundred more things to write, but I think Grandpa is tiring of playing with both girls and Sarah is pulling on my legs. I started this post 24 hours ago, and if I don't post it now, I might never! I have a root canal scheduled for Thusday, so this is my last chance.

Again, we thank you for your prayers and support, and for blessing us with your generosity.
Please keep praying for Sophie's miracle.

Avon Lake Lottery Fundraiser

I wanted to get this info on here ASAP, as I know Emily is working on an update too that I am sure she will post in the next day or two and because this fundraiser ends in just 6 days. Things have just been very crazy since they arrived home last Thursday...even less time to spend on the computer. I was able to be there on Thursday evening and then spent most of the weekend with Emily, Sophie, and my family in MI, and of course I am always so happy to spend the time with them. I will let Emily provide all the updates as a lot has been going on since the last post here.

Anyway, Carroll Middlemiss, one of Sophie's teachers from Little Learners, had started a lottery-style raffle back in March but due to some computer issues I wasn't able to get the necessary information from her to post on the website. However, she still has tickets available and the lottery is based on the Ohio's 3-digit lottery system. Tickets will be available through April 30th and are $10. Each day in May, except Sundays, a ticket will be drawn with the winner receiving $50.

To purchase a ticket, please contact Carroll by phone at (440)899-1231, or by email at cmiddlemiss@oh.rr.com, or by mail at 603 Wildbrook Drive, Bay Village, Ohio 44140. She still has plenty of tickets left and her goal was to sell 1000 tickets. She will also be selling tickets at the last Little Gym event on April 27th.

Thanks Carroll for your efforts! It's so awesome to see so many friends, family, and strangers involved in supporting Sophie.

Love,

Sarah

2 days left...not that we are counting!

2 days left! It’s been 56 days since Sophie was diagnosed. 56 days since our lives took an unexpected turn. Actually, we have spent 40 full days receiving some form of medical treatment at either St. Jude or in Cleveland. I’m currently reading “The Purpose Driven Life” by Rick Warren. In the book, he says The Bible is clear that God considers 40 days a spiritually significant period of time; “Whenever God wanted to prepare someone for his purposes, he took 40 days...” This has definitely been a spiritual time for all of us.

The last few days have been especially busy. Emily’s parents left on Friday and we now fully recognize just how much they helped. They were amazing. The apartment was always clean. The fridge was always stocked. The laundry was always done. Meals were always prepared. Most importantly, Sophie loved playing with Grandma and Grandpa! Thanks Mom and Dad for all you have done and all that you continue to do.

St. Jude has been amazing. What an incredible place. I am convinced that Sophie has received the absolute best care in the country. Sophie’s treatment would have been the same had we stayed in Cleveland (31 days of radiation), but how the treatment was administered and the environment is what really separates St. Jude. Sophie told us at dinner tonight that she “likes St. Jude” and proceeded to talk about all the different doctors and nurses. She is no longer anxious and actually looks forward to her “sleepy medicine.” We are grateful for our time and treatment here at St. Jude, but we are excited to go home!

We found out today that we will be back in Memphis on May 3rd for our 1st post treatment MRI. It should be a quick trip. We’ll come in the night before and leave following treatment the next day. We are more than just a little nervous. The doctor continues to tell us that the tumor may still appear “angry” and that we should not be disappointed if the tumor is unchanged or even slightly larger. He went on to say that it typically takes 8 -12 weeks post radiation to get a good snapshot.

Sophie improves more each day. Her improved strength and stamina is what really amazes me. Yesterday, we walked along the river (3.5 mile walk), and Sophie walked at least a ½ mile! Her personality is back and she is sleeping through the night again. The only area where we have not seen much improvement is the weakness on the right side of her body. Her walk is still affected and, unless prompted, she will not use her right arm or hand. We pray that the radiation will continue to work and that eventually that symptom will improve also.

I’m sure Emily will post an update once we are back in Avon Lake and we will continue to use this site to keep everyone informed about Sophie’s miracle. I just want to thank all of you for the support and prayers over the last 56 days. That support and all those prayers helped us survive. THANKS!

4 Treatments to Go!

Today was the last full week here at St. Jude, and we can't wait to go home even though the thought of heading back to reality makes us a little nervous. The realization that our life in Avon Lake will be very different from what is was before is hard to describe. But before we talk about home, we must appreciate the present.

Sophie's mood still is great. She has had a lot more energy these past few days. She went on walk to the Mississippi with Grandpa, and didn't stay in the stroller much at all. Wednesday she climbed up the 39 steps to the apartment for the first time. She just needed a little support from Grandma and me. Today she went with Marc to Target, and he said she was wonderful. She continues to say some hilarious things that make us all crack up. She keeps asking to go back and get her sleepy medicine. I think she's pretty fond of the head anesthesiologist, who has been wonderful with Sophie. Today she told me that he was her favorite.

Marc and I took Sophie to the mall again on Wednesday. She wanted to ride the merry go round. After our first ride, she wanted to do it again, so we stepped up to pay for the ticket. We were the only ones there in the middle of the day, and it took me by surprise when we got off and the kind old lady selling tickets asked me if Sophie was disabled because she had noticed she was walking funny. Up until this point, I haven't thought of Sophie as disabled. The lady simply wanted to know, so that Sophie could ride free. We went on the merry go round 2 more times after that.

Wednesday she was sitting straight up in recovery and was wide awake which was a nice change. We haven't used the special sleeping underwear in radiation the last couple days, and there have been NO accidents. She slept through the night last night from 11:30 to 5:30, so I'm hopeful that soon she will be back to sleeping all night.

She has been doing well with her appointments, and spent some time today throwing balls in the apartment. We met with the speech pathologist today, who wanted to evaluate Sophie's facial muscles to see if she could suggest some exercises that we can do once we get home. Sophie is still drooling a little from the left side which was always the stronger...I've mentioned that before in her posts. We pray that the nerves are being affected by the radiation induced swelling, and that the drooling and weakness has nothing to do with the tumor.

We've accepted that her walk may take some time to get back to normal, and as long as her personality is back, we can deal with the walk, hair loss and weight gain.

We've gotten the okay to reduce the steroids to 1/2 mg a day. The radiologist and anesthesiologist really want to see a reduction in the facial weight gain and swelling because Sophie has been having some trouble breathing during radiation. The mask is fitting so tight that it is forcing her airway to be compressed. They were able to elevate the mask a little, but if her face gets anymore swollen, a new mask will have to be made, and that could set us back a day. We have been advised to really limit the amount of salt in Sophie's diet, and that has been difficult considering her favorite foods lately have been olives and pickles. But we can do anything for a week!

My parents left this morning. The amount of help and support they have given us is impossible to explain. We are so grateful for all they have done and for all they continue to do. I thank God everyday for blessing me with the best parents in the world.

Dad made the 3 hour drive to Nashville with Mom and baby Sarah. From there my Mom got on a plane with Sarah and my Dad continued on the drive, and is probably in Cincinnati as I type. It was sad to see them go, and made us wish we could go too.

We will miss little Sarah's babbling. She has really grown and changed in the past 7 weeks. She is crawling all over the place and pulling up. My parents are convinced she will be taking some steps by the end of the month. Sophie is the best big sister ever, and Sarah loves her. It is going to be quiet here without them, but we are hoping the 3 of us will be able to get out and do something fun this week end.

Thank you all for your constant prayers and support. We ask that you continue to remember Sophie in your prayers and that you beg God to grant Sophie her miracle. 4 more treatments to go...not that we are counting...

Wednesday April 11, 2007

I know it's been a few days since I've updated, but that is because Sophie is doing much better. She is requiring a different type of energy from me, which has proven to be even more exhausting! We are seeing lots of smiles, and hearing lots of laughs. We've actually been having fun, and her personality is coming back.

I do want to try and keep this short, but promise to post again soon, because I could go into more detail about a lot of things.

We have 6 treatments left, and Sophie is finally conquering her anxiety. We aren't sure if she is really getting used to all of this, or if the steroid dose reduction and/or radiation to the tumor is helping with her moods. Before we head to St. Jude each morning, she asks how many appointments she has, and what they are, and what order they will happen. She has gone from saying that she like "talking appointments" the best, to saying she likes "sleepy medicine" (radiation) the best. Today's schedule was a little different than the usual - we had radiation first, then PT. While we were waiting for my Dad to pick us up (after her 2 appointments), she said, "I wish I could do my sleepy medicine again today!" In fact, while she was being prepped for sedation, she was laughing and talking with the staff (something she has never done). She was also sitting up in recovery when they called us back, and was wide awake. Usually she is grumpy and not wanting to say much. We are grateful for that, and for the fact that Sophie is more willing to walk through the hallways of St. Jude.

She continues to carry about 6 more pounds than she came with, so she still looks very different. She is losing more and more hair everyday, and now the loss is in a U shape around the base of her neck and up toward her ears. Luckily her hair was pretty thick prior to radiation, so it is possible to hide some of the loss. Her smile is back on her right side. We talked to the doctor on Tuesday and shared our concerns about weakness and drooling on the left side of her face . He seems to think that these symptoms, including periods of redness and tightness are a side effect of the decadron. We are down to 1 mg a day now, so we are hoping that we will start to see the weight and appetite decrease, as well as the left side weakness. Sophie's doctor is hopeful that we will be down to a minimal dose (if any) by the time we return to Ohio.

As far as her limp goes, we are told it is due to muscle weakness in her leg. Not really from lack of use; more likely due to the connection to the nerve not taking place as a result of the tumor. We are hopeful that this will go away because the radiation should shrink the tumor. We realize this may take time due to the way the radiation initially "angers" the tumor and areas of necrosis. Apparently this tumor is not consistent in the way it presents symptoms, so the fact that her walk is not yet back to normal doesn't mean that it will never be normal.


We have had the opportunity now to personally meet 4 other families who are traveling the same road we are in dealing with this horrible disease. Please pray for these, and all of the children who are fighting this battle.

In my last post, I was so focused on Easter and Marc's RCIA, that I forgot to mention my brother Charly who came to visit for the second time since we have been here.
It was wonderful to have him here to share in Saturday night’s service, as well as another playmate for Sophie for the weekend. And he was gracious enough to cook us all French toast for breakfast one morning during his short stay. Having somebody else here to take over the day to day tasks, even if just for one meal or a couple of days makes a difference and certainly lightens our load. As Mom has mentioned before, our weekend visitors are many, and although their visits are very short, the support they bring is amazing. I know it was a long drive for Charly for such a short stay, but we truly appreciate him taking time from his schedule to be here with us.

I will try to update again soon, but for now I'm going to bed to try and get some sleep. Sophie only woke up 3 times last night. I'm hoping for the same tonight. She has an early radiation appointment (7:45) tomorrow, so I am planning on a little snack with her medicine around 11:30pm to tide her over. Oh, and last night was the first night without a pull-up, and she was great. I think I'm going to be brave and leave it off for radiation tomorrow.

We thank you again for your prayers and support. We are still getting Easter cards and gifts..the mail is slow, so please do not send anything more because we might not get it. Sophie and I have our return tickets booked for 2:00pm next Thursday, so pray that everything goes as planned from now until then. We want to be back in Avon Lake by Friday so that I can make it to Trenton on Saturday for my sister's baby shower.

Please keep the prayers coming. We thank God everday for all of you, and pray for you more than you can imagine. We are so touched and grateful for all that you are doing for our family, and ask that you might continue these prayers for Sophie's miracle.

Happy Easter!

Happy Easter!

Just a quick little update; I always say that it will be quick, and then I find myself still typing an hour later!

Saturday night we all went to the Easter Vigil mass. We were so blessed and fortunate that Marc was able to complete his RCIA at St. Mary's; the church we have been attending here in Memphis. Marc started the RCIA classes in Avon Lake back in September, long before Sophie's diagnosis. When we realized that we would be here for the Easter Vigil, he didn't think he would be able to complete the sacraments. We contacted the right people and everything fell into place in just a few short weeks. Marc had been intending to complete RCIA since we were married almost 10 years ago, but just never did. For whatever reason, he felt the calling in September and told me that he was going to go through with it. It's obvious to me during this challenging time in our life, the role that God plays. I have seen Marc grow closer to God during these past few months than I thought possible, and for that I am grateful.

Sarah is still recovering from her virus, her fever turned into a rash (which she still has, as well as a runny nose and cough) so she was not the happiest of children during the service. It didn't help that it started at 7:00pm and ended around 9:30pm; especially because Sarah is normally in bed by 7:30. Grandma offered to stay at the apartment with her, but I really wanted all of us to be able to attend mass at the same time, so I convinced her to come. Sarah started crying the minute we stepped foot in the church. Grandma took her to the cry room - it was a pretty good cry room because we didn't even know she was crying until Grandma told us that she cried for the first 20 minutes! Sarah was able to join us in the pew just after the homily, so that she could see her Daddy make his confirmation! (If only she knew what was going on.) In all seriousness it was a beautiful ceremony, and Marc feels blessed that he was able to complete it here. As part of the process he had to choose the name of a saint as his confirmation name. He chose St. Jude.

On the other hand, Sophie behaved so well, and even though I was pretty focused on holding her and making sure she was happy, and wondering if Sarah was about to scream, it was still beautiful to be there as a family. I could feel God's presence and during the confirmation service, one of my favorite songs, "You are Mine," was played.

I laid down with Sophie at 10:30, and dozed off a little. When I woke at 11:15, I came out to find that the Easter bunny came to the apartment. My Mom had combined what few goodies I had for the girls, with all the stuff she had been collecting, to make Easter baskets for the girls. She also had eggs filled with money hidden all over the apartment. Sophie loved it. Sarah was clueless, so Sophie got to "open" 2 baskets. I was grateful that I didn't have to worry about getting all that set up, and that my girls had a great Easter despite my lack of energy and organization. Marc's Mom and Dad sent us a Honey Baked Ham, scalloped potatoes, green beans, and a turtle brownie. Marc was able to "prepare" everything in 30 minutes. Sophie was hungry at noon, so we ate early, and it was nice that nobody had to worry about shopping or cooking. Thanks Bob and Kathy.

Tomorrow we will start our last full week here at St. Jude. Somedays it seems like we have been here forever, and others it seems like we just got here. It will definitely be a bittersweet moment. Sophie symptoms are still stable. Her walk and muscle weakness seem to be the main area of concern. She still walks with an obvious limp; her right leg is stiff and awkward. We've been told that she may be accommodating for all the weight gain around her middle (kind of like a pregnant woman's waddle) or that it may be a "muscle memory" issue due to the fact that she has been walking like that since Feb. 22. It worries me a little because I know that exercise and being outside is what she needs, but right now that frustrates her because she knows it is difficult. Tomorrow I will ask again, what the medical team says about the continued leg issue. To me, it doesn't seem tumor related, but again, I'm not the expert. I love seeing her smile, and hearing her laugh. Her personality is much better, and tonight she didn't mind when I put her in bed and told her I was coming out to do some work on the computer. She fell asleep on her own. I know I should be in there cuddling up with her, so I will end this soon.

Please say an extra prayer tomorrow. Monday is the day that her port has to be accessed, and we are still dealing with anxiety. The good thing is she only has 2 appointments, so we should be done by noon.

Because we are leaving soon, please do not send anymore packages or letters in the mail. We do enjoy getting them and certainly appraciate your thoughtfulness, but have realized that it can take up to 2 weeks for letters and packages to be filed and inventoried, so that we can collect them. We don't want to be gone by the time they are available for pick up, and aren't sure what St. Jude's policy is as far as forwarding mail.

We are ever so grateful for the support of our family and friends. This whole experience has been really eye opening. We are amazed by the number of people who care enough to send a card, a package, an email, or make a phone call to let us know they are praying for us. You have no idea how much that means. We are grateful for our faith, and also for your faith. This is what gets me through when all I really want to do is curl up in a little ball and sleep. When people ask how we are doing this, I say it is far from easy. We don't have a choice, but we do have our faith.

Please, please keep the prayers coming. God Bless you all on this Easter holiday.

Maria's Boston Marathon

We are truly grateful and amazed daily at all the generosity and support for Sophie from all of the wonderful friends, family, and strangers.

We just wanted to take a minute to recognize the individual efforts of Maria Holaday. She is an old neighbor of Marc, Emily, and Sophie's from Cincinnati. Maria has been a marathoner for a long time, however, for this year's Boston Marathon, which will take place on Monday, April 16th, Maria has been raising money for a cause, and that cause is Smiles for Sophie.

Just today, she made a deposit of $2300 to the Smiles for Sophie account. This was from donations she has collected from friends, family, strangers, and "Sophie supporters" as she ventures out on her "run for the cause." Even still, donations have continued to pour in as Maria has continued to let everyone know about Sophie and how they can help by supporting her in the run.

Thank you so much, Maria, for your endless energy (to even complete all these runs :-)!!) and for dedicating this year's run to Sophie. We truly appreciate all you do. Have a great run!!!

Love,

Sarah

P.S. The above picture is Maria doing Sophie's first haircut!!!

Carrabba's Fundraiser

Hello everybody,

Kevin was so kind as to add the updated flyer for the Carrabba's lunch. It is in the "events" section of this webpage (as well as a smaller version above), so if you are interested in attending, please check out the flyer.

It will be on Jun 16th from 11:00-1:30. There are 6 different people you can contact for tickets, so whoever is closest to you or easiest to get the tickets from, please see the flyer for the phone numbers. Once you contact one of the tickets sellers, you will get a ticket that has a time checked on it - that is when you should show up for the lunch. The seating times are in 30 minute increments. This is so Carrabba's can accommodate everybody, split up throughout the 1.5 hour time frame, and not all at once.

Thanks so much to Andrea Segedi for all of her organizing efforts!! As always, we know there are many more who contribute to make these events a success, so thanks to everyone who has helped and who will continue to help.

Also, Meg Cochran, an Avon Lake resident and friend of Kim Walters, sells jewelry and has offered to donate a portion of her proceeds to the Smiles for Sophie account. We did make a flyer but for some reason, it was not legible. So, if you are interested, please contact Meg at 440-933-5227 or megflynncochran@oh.rr.com. The flyer was advertising a charm bracelet (Sterling Silver Prayer Box Charm - see above), which she says is a great gift for girls making their First Communion, and one she will sell through May 31, donating $5 per bracelet to Sophie. The bracelets are $22 and can be shipped to you directly for $6 or picked up from her house in Avon Lake. To view the jewelry online, please visit www.mysilpada.com/meg.cochran. I'll see what I can do about getting the flyer back up in a legible format. Thanks Meg!!

Thanks to everyone for all the hard work, generosity, prayers, and love you continue to send. It all makes a difference and we can never thank you enough!! Happy Easter!

Love,
Sarah

So Overwhelmed! Wednesday April 4, 2007

Once again I started this post on Wednesday morning and now I'm finally getting a chance to finish it. I have a lot to say about Tuesday, and even more to say about Wednesday and today! This will be a long one - if and when I get it finished! I'm not promising to reread or proof this one either, so if you find mistakes forgive me. Mom, when you read this, try not to cringe at the errors. =)

WOW!!! We are so overwhelmed. Overwhelmed by our experience last night (Tuesday), and overwhelmed by your thoughts and prayers. Let me start by saying that we definitely felt all of the prayers last night. Soon after Jack and his wife Peggy, walked into our hotel room, before we said 10 words, he said "I feel God's presence in this room." He said it so nonchalantly, that it almost took my breath away; Marc and I both started crying, and I don't think the tears ever stopped as I held Sophie on my lap, and prayed. Jack and Peggy placed their hands on her and prayed and prayed, quoting scripture so beautifully. His wife was talking in tongues and saying, "Praise you God." I remembered crying when Sophie was baptized 3 and 1/2 years ago, and the same tears came back. They were not tears of sadness, or even tears of joy, but more like tears of relief. All along I've said I've placed this in God's hands, but at that moment, I really felt myself hand this all over to God. Jack prayed for "complete and total healing," and said that he felt we would be granted this miracle, and that many of the people in his prayer circles (who have witnessed his work, and prayed with him) have gotten the same feeling. One person even described a vision he had, where God placed a "bone marrow" in Sophie's head and cured her! So, we are more than hopeful than ever; in fact we have been going back through the events of the past months and noticing all the "coincidences" that have taken place and really realizing just how evident God's presence is and has been through all of this.

Now, I must go back and tell you the events leading up to our trip to Nashville. Tuesdays are our "assessment triage day." This is when Sophie gets her weight, height, temperature and blood pressure checked. She also has her blood drawn from her port for her CBC and other blood count checks. We were dealing with the usual amount of anxiety but when the nurse checked Sophie’s temperature it was high - around 99.5. The nurse decided to go ahead with the other assessments and then take her temp again from her other arm. Sophie was fighting the blood draws, and her blood pressure was high from the anxiety. When the nurse took her temp the second time, it was 101. She then made the call to the "clinic" where Sophie's doctors are. By this time, we were late for our radiation; we were being paged at the same time to head to two different places. After meeting with the E Clinic nurse, and a confirmed temp of 102, we gave Sophie a dose of Tylenol and were told to wait and see if the temp came down. We knew that if the temp didn't come down, we wouldn't be able to do our radiation treatment because she cannot be sedated with a fever. So, while we waited, more blood was drawn for a culture to make sure there was no infection in her port, and we tried to get a urine sample. We had no luck with the urine sample because Sophie had just gone potty, and had nothing left in her because she was not able to drink since 8:00am and it was now going on 12:30. She was hungry, cold, tired, thirsty, feverish and grumpy. An hour after taking the Tylenol her temp was rechecked, but it was not coming down, so they gave us the dreaded news - no radiation. We were bummed because we knew this sets us back a day in our treatment, but Sophie was happy because they told us to go and get something to eat and drink so that we could try again for the urine sample.

Sophie started eating her lunch in the cafeteria, and then we heard a page for us to come back to the E clinic. So we packed her lunch up in the wagon and headed back down the hall. There they decided to give Sophie an IV dose of an antibiotic to fight any possible infection; she sat in the wagon and ate while she had the 20 minute IV infusion. Now time was ticking and we were getting a little nervous because we wanted to be on the road to Nashville no later than 2:00. The IV was to be done at 1:30, but we still needed the urine sample and then time to wait for preliminary results. After pumping Sophie with Sprite and water, she decided she did have to go to the bathroom; we were able to get the sample. Now we waited for the results. The nurse paged us around 1:45 and told us that Sophie’s urine had blood, bacteria and white blood cells in it. We were given a prescription for an oral antibiotic, Tylenol, and a thermometer since it worried the doctor that we were headed to Nashville and would be far away from St. Jude's throughout the night. We left for Nashville around 2:45.

The ride was long but uneventful, except when I looked over at Sophie at 6:00, and she seemed feverish. I took her temp and it was 103. We gave her another dose of Tylenol and antibiotic. At this point, I was begging, "Please God, no more...we are reaching our limit!"

I already wrote about our awesome experience with Jack and his wife Peggy. We decided we should try and get some sleep. Of course Nashville was getting hit with major thunderstorms, complete with hail and lightening, (a sign from God?) so sleeping was hard. I lay next to Sophie and prayed and prayed, crying for my poor little baby who has had to deal with so much. Her night was a little rough; she had quite a few night terrors where she woke up screaming and saying crazy things. We made our routine trips to the bathroom and had our midnight snack. I checked her temp at 1:00am and it was below normal!

Morning came really soon and we headed back to Memphis. You could tell Sophie was feeling better because she began asking if we were there yet just 20 minutes into the drive. I continued to check her temp periodically because I wanted to know if we should give her Tylenol. We didn't want to get back to St. Jude and find out she had a fever, and miss another treatment. The whole time her temp was around 98 degrees. We were so thankful!

Once back at St. Jude we headed to assessment triage. Sophie was the calmest she has EVER been. Her anxiety level was much lower, she gave another urine sample, and had her temp and blood pressure checked. Her blood pressure was the lowest it has been since we came. She was doing amazingly well. We headed to her radiation, where she was a little more anxious about the whole, "lifting of the shirt," but still better than usual. After radiation, we got the results of her latest urine sample, and the doctor said there was a lot of improvement since Tuesday. He was sure that it was the IV dose, so he wanted to give her one more. Again, we were in a rush; this time because we were scheduled to meet with a Make-A-Wish representative (a bittersweet opportunity that Sophie is eligible for.)

After all that, we came back to the apartment, and Grandma tells us that little Sarah has been unusually grumpy. Now, Sarah has always been pretty high maintenance, so we knew it must be bad for Grandma and Grandpa (who are used to being wrapped around her little finger) to tell us this. We decided she felt warm, took her temp and it was 101. We looked for our list of urgent care centers in the area, called and got the directions to one, and Marc and Grandma headed out with Sarah at 6:30. After a blood test, a urine test, a dose of Tylenol, and Motrin, and a near death experience (there was a PARKED car in the center lane of the expressway on the way back from the hospital that Marc didn't see until he quickly approached it at 65mph and had to swerve to avoid) the 3 weary travelers arrived back at the apartment around 10:00pm with the diagnosis of "a virus." We could sure use prayers for Sarah so that she gets well, and so that Sophie doesn't come down with the same thing. Pray for NO MORE SETBACKS!

Anyway...Sarah hasn't had a fever since this morning; she's been crabby and clingy, but sleeping a lot too. We are hopeful that she is on the up side.

I went to bed last night a little weepy. Reflecting on the events of the last few days really moves me. I still get teary eyed each night as I lay down next to Sophie. I just want to hug her so tight and promise her that everything will be okay. I was listening to a song by Jennifer Stanley entitled "The Person Who Loves You the Most" and the lyrics are about the strength of a mother's love (which all of you mothers, and most of us as children -hopefully- can relate to), only to go on and say,

"But there's One who loves you, greater than you've known,Heaven's arms reach out to hold you close,Cause God loves you more than the person who loves you the most"

Wow, I know how much I love Sophie and how I would do anything for her, but to realize there is a God who is capable of a love even greater than the love I have for Sophie is beyond comprehension. I needed that reminder.

Sophie's day today was her best yet. She walked into St. Jude instead of having me carry her. I don't think she has ever done this. We brought a bag of Easter cookies to deliver to each person who helped us during our appointments, and Sophie liked that. She was great in OT and PT, laughing and smiling, and even trying to jump with two feet. Both therapists stated that they are seeing an improvement in her fine and gross motor skills and strength. After leaving her therapy appointments, Sophie was willing to walk down the hall for her radiation treatment and appointment with her radiologist. We were so impressed. Dr. Krasin commented that Sophie’s face was losing a tiny amount of the puffiness (I don't see it, but I'll believe him!) and that she looked good. After his assessment, he decided to reduce the steroid another 1/2 mg, so we are down to 1 and 1/2 a day. If Sophie continues to show no new symptoms, and her current symptoms remain stable, he is hoping that we will be close to being down to a very minimal dose (if any at all) by the time we head home. We're keeping our fingers crossed and our hands folded!

Sophie was much better in sedation. Not as anxious, and her blood pressure was lower that usual. I was proud of her. She came home and told Grandma, "I did a great job at 3 of my appointments. I didn't cry, except for at the fourth one when I just whined a little!"

She maintained her good spirits the rest of the day. Came home, ate her lunch, and had fun playing. She opened her packages, and wanted to try each thing out. She agreed to go on a stroller ride with Grandma and Grandpa while I tried to shake my headache, and Sarah slept and Marc read his "natural remedies" book. They said she was laughing and fooling around in usual Sophie style all the way down and back even though it was cold and windy.

She ate dinner, and then gave me her usual sigh, which has come to mean, "I'm tired and ready for bed." I gave her last doses of medicine in bed, as well as the much anticipated treat, and then came back out to refill her water. When I got to the door, I could hear her singing and making up her own songs. What a beautiful sound to hear. I had forgotten what that sounded like. When she finished, I walked in and told her I liked her song, and asked if she had taken a bow. She didn't lift her head, but said in a matter-of-fact tone, "I'm laying down Mommy, I can't bow." She was her usual Sophie self and it made me smile.

I just can't believe the changes I have seen in Sophie the last couple of days. We are so thankful, and we hope there are more positive things to come. Marc has been doing a ton of reading about homeopathic remedies, as well as natural ones. We are trying to get everything ordered and lined up so that our routine is set to begin as soon as we get back home. We are all counting the down the days.

Thank you again, for your thoughts and prayers. We are so blessed to have so many people willing to help us in so many ways. We are thankful that we are able to witness the work of God through so many of you. Please keep the faith and feel the presence of the Lord as we do during this Holy Week.

Please Pray All Day on Tuesday

Hello everyone. I'm glad Marc posted last night. Although I do like keeping everyone informed, I also like to be able to sit back sometimes and see the situation from another viewpoint.

After our appointments tomorrow, we are headed to Brentwood, TN to meet with a spiritual healer that we heard about through my Mom's neighbor. He said he doesn't know how to explain the gift he has, but that he has seen some amazing things happen. We believe him, so Marc, Sophie and I will make the 3 1/2 hour drive, meet with him, and then stay in a hotel overnight. We'll have to get up real early to return back to Memphis for our 10:00am appointment on Wednesday, but we don't mind. His words were "there is power in numbers" and he suggested that we ask everyone we know, and even those we don't, to pray all day for Sophie, especially at 7:00pm.

My sister left on Sunday (after being here for nine days) just a few hours before my friend Andrea arrived. Sarah, of course was a HUGE help, as she has been throughout this entire ordeal. Sophie LOVED playing with her, and we all loved and appreciated her help with all the other boring but necessary tasks that go into living in our temporary home, as well as caring for a less than 100% 3 year old, as well as an almost nine month old who has just learned to crawl and is making her way all around this apartment! My sister Sarah was able to come to St. Jude's with me for a couple appointments, and she also ran many errands. She slept in bed with Sophie and me, which was quite a feat considering Sophie takes up the majority of the bed, and my sister is now almost 30 weeks pregnant! Sarah got to experience Sophie's multiple nightly wakings, and Sophie even allowed Sarah to take her to the bathroom a couple times. It was a small but much appreciated break for me. I know Uncle Matt really missed her while she was gone, and we appreciate their sacrifices because Sarah does not get paid when she is not working.

Andrea's visit was short but so sweet. She was here, just 30 hours but did so much. My parents and sister went to church on Saturday night so that Sarah would be ready to leave for the airport at 8:00am and also so my Dad would be able to pick up Andrea at 10:30am. I stayed "home" with my 2 girls alone for the first time since diagnosis; it was definitely much different than it was when we were home in Avon Lake! They were both pretty needy at first, but eventually settled down. I went to church alone on Sunday and when I walked in the door from church, I was anxious to see how Sophie would be responding to Andrea being here. I walked into the bedroom - they were in the closet, or as they called it "the office" doing crafts with all the supplies that Andrea brought. Sophie told me to "go on out". I am thrilled that Sophie is willing to play and interact with others; unfortunately I still get all the trips to the potty, as well as the trips to St. Jude for appointments when Sophie is far from happy.

We ventured out on Sunday afternoon; the weather was amazing. We drove downtown, went on a carriage ride, stopped at the Crepe Maker, saw the ducks at The Peabody, and walked around the mall with both girls in tow. Boy was I glad to have my family and Andrea with me! Two strollers and all the belongings seemed like a lot to manage for one person! Anyway, the week end was fun and we are so grateful for all of you family and friends who give so unselfishly. Andrea treated my Mom and me to foot massages and we stayed up talking until 1:30 am. Andrea cooked a couple great dinners, and as I type, my family is enjoying the pot roast and vegetables she put in the oven to cook this afternoon as she headed out the door to the airport.

From the medical front, we are still down on the decadron to 2mg a day. Friday was the first day of this dose, and I was a little nervous on Saturday morning, because Sophie's breathing seemed labored and she was extra grumpy. I gave her an additional 1/2 milligram...just for peace of mind. She perked up; I'm not sure if it was because of the additional decadron or because we had a mini picnic and played at the Ronald McDonald playground before the rain moved in. Other than the above, her symptoms remain the same, except for some significant improvement in the use of her right hand, and in her smile. She has been doing much better in physical therapy, and tried a few times today to walk the bridge without my assistance. It is still hard to watch my daughter struggle to stay on the balance beam after watching her in gymnastics less than a year ago, flying down the high beam and jumping off the end.

Her symptoms seem to be improving differently from how the doctors told us. We were told that her limp and balance would improve first, and her smile last. I think we have had so many people playing with her and making her laugh lately, that her smile can't help but improve!

Today was pretty typical for a Monday. We had the usual weekly struggle with the port access. I try to comfort her, but she starts with her, "I don't want to lift my shirt." even before we leave the apartment. And when she sees me coming with the numbing cream and band-aid, she starts whining. For the most part, I still can't get a word in. She tells me, "No, don't talk, just make them close my shirt."

Tomorrow we have labs before radiation which is another sore spot. Something about watching your own blood going into a tube from another tube in your chest just really puts Sophie over the edge. We could use some extra prayers at 10:15am!

I will reiterate the gratitude that Marc expressed in yesterday's post. Although I did not witness the event, everyone told me how truly amazing it was. I've heard from many people how well organized it was, and how everyone was so kind and generous and most importantly how many people said they were inspired by Sophie's story. I hear Sophie IS making a difference in this world. Just as I always knew she would. We are so grateful for those of you who had big "jobs" but also for those of you who had small "jobs." We know it was the work of the "team" that made the event a success.

Please please join us in prayer for Sophie's healing all day Tuesday and especially at 7:00pm as we venture down another road in attempt of finding our miracle.

Thanks again, from the bottom of our hearts to all of you who are supporting us in a million different ways. We realize the sacrifices that many of you make, including time away from your own families and work, in order to dedicate yourselves to helping us. Please keep the faith and keep praying for Sophie's miracle.

Sunday April 1, 2007

This picture was chosen by Emily. We've entitled it, "One minute old."

After attending the fundraiser in Avon last night, I decided it was time that I make a post. Besides, Emily deserves a much needed break. However, you must know that I am not as eloquent as Emily.

Where do I begin? The K of C fundraiser was amazing! So many people worked very hard to make it a success and so many more showed up to support Sophie. My heart just wants to thank everyone, but I know in doing so, I will inevitably forget people. I’ll ask for forgiveness in advance. Please forgive me if I fail to acknowledge your efforts.

I want to first thank Scott and Elizabeth Gedeon. They spent countless hours over the last month coordinating the logistics and working to make the event a success. What’s incredible is Emily and I hardly knew the Gedeon’s. I had met Scott briefly at a birthday party last summer and met Elizabeth earlier this year at Sophie’s Sunday school. Emily knew Elizabeth through the Avon Lake Preschool PTA and also because Elizabeth was the neighbor of one of the families (Chris and Kim Walters) in Sophie’s playgroup. I am humbled that 2 people who were really just acquaintances would give so much of their time to help Sophie.

The Knights of Columbus are also amazing. In addition to sponsoring the fundraiser, they presented me with a rosary that was blessed by Pope John Paul II. The rosary came with a wonderful story about miracles (thanks Jim) and prayers from the entire K of C. We now have both a rosary and a crucifix (my grandmother gave Sophie a crucifix that was blessed by the Pope when she was in Rome) that were blessed by Pope John Paul II.

I also want to thank Kim and Chris Walters. In addition to helping tremendously with the fundraiser, you have been a source of constant support for us. The meals you’ve planned, the comments on the website, the cards and care packages you sent, and all the help last night means so much to us. I want to thank the Avon Lake Preschool PTA and all the girls in Emily’s play group. Thanks Mom and Dad for outbidding Elizabeth Gedeon for the Tigers/Indians tickets and then giving the tickets to Elizabeth and Scott. Thank you Aunt Patti, Uncle Rich, Uncle Joe and Michelle (the hitchhiker) for driving down from Michigan to help with the event. Thanks to my sister Leslie and brother-in-law Jacob who volunteered to come and help, only to turn around and drive all the way back to Michigan when it was over. Aunt Margaux, thanks for baking and for all the love you send down to Memphis each week. Thanks to the other members of our family for being there to support Sophie.

Philip Morris and all the amazing people I work with have been unbelievable. Jeff and Sue, thanks for your efforts. Jeff, your passion and extra large heart continues to amaze me. Sue, the bacon was awesome. Alex and Paula, thanks for your ongoing support. Emily and I love the almost daily comments and Sophie loves opening the many little treasures you send each week. Eric, thanks for the music. I know it takes a ton of time to set up the equipment. Jim, Ed, Christina, Rich, Cybil, Michael, Stephanie, Deana, Brad, Tim and Fred, thanks for helping with the event and showing your support. D73, thanks for being the best district. I also want to thank everyone who donated the wonderful gift baskets. Your support really has been phenomenal.

I want to thank my RCIA class. Your support and friendship has been awesome. Pat and Jim, thanks for guiding me on my journey. I want to thank Father Beatty and the entire Holy Spirit community. You have taken my family under your very enormous wings, and for that, we are grateful.

I want to thank Ed and Megan McNamara. You have been an inspiration for us. Your support, advice, and willingness to share so much of your time means the world to us. We are where we are today because of you. Know that we pray for, and think about, Maria each and every day. I look forward to coming home and taking Maria and Sophie to Cedar Point.

Finally, I want to thank the community. The support last night was humbling and we are blessed to have so many people praying for Sophie. We realize that many more people than those we mentioned played a huge part in making the fundraiser a success. Although I may not have mentioned your name, I am still just as grateful.

On another note, I must say that I’m excited to be back in Memphis. Sophie had a huge party planned for me. She decorated the entire apartment with her crafts and baked me a brownie cake complete with frosting and candles. She even had presents for me. She gave me a Hershey’s candy bar, a shirt from the Gap, and made me a framed Q out of buttons. I am the world’s luckiest dad!

Sophie is continuing to show improvement. Her personality and energy are so much better and she was clearly happy to see me. She is down to 2mg of decadron a day, so we’re hoping that some of her puffiness and weight gain will start to subside, although we know it will take time. She continues to walk with a limp, but we are seeing more of her smile back. We only have 13 radiation treatments left and then we’ll head back to Avon Lake. While we are excited to go home, we are so glad we came to St Jude. This place is amazing.

Continue to pray for Sophie, Maria, and every other child and family that are dealing with this horrible disease.

Happy Birthday Maria Esparza.