Thursday March 29, 2007

Hello again, family, friends and total strangers. I thought I would take a minute to give you a short update...if indeed I can keep it short, and if Sophie doesn't wake up and tell me "mommy, come to bed!"

My Mom gave an accurate description of the latest events, with a little more humor than you are used to getting from me. Sometimes I feel like I should be a little more optimistic, but in this situation it is hard. Although Sophie is responding well to the decrease in steroids...as of tomorrow we are down to 2mg a day...she is still no where near her old self and that is so hard to see. On Tuesday her weight was up to 42 pounds. That us an increase of 6 pounds since she was first diagnosed; a lot of weight for a little person (not even 4 feet tall to gain). Her face is so puffy it looks painfully tight, and now her hair loss is unmistakable. Lucky for her it seems to be thinning the most at the base of her skull. We are sure the radiation is working because she is definitely better than she was when we first got here, but I am desperately wanting to see some resemblance of the "old Sophie".

When my Mom said she was adamant about not wanting to go to St. Jude everyday, that was an understatment. Sophie refuses to go and cries the entire hour prior to us leaving, the entire ride there, and pretty much every minute in the waiting rooms. I have tried every trick that I can think of to distract her; every now and then I get lucky for a few seconds, but then she will resume her whining and crying. Usually I cannot even get a word in. It can be very difficult and frustrating to convince your child to participate in the therapy activities while she whines and cries, and grimaces at the therapists.

On Tuesday morning my Mom, Sophie and I were headed to St. Jude (we were running late as we often are - regardless of how early we get up). I was driving -something I don't normally do since my Dad has been our valet, with curb side service. So I was speeding down the back road from Mud Island to St. Jude, and failed to stop at the stop sign, and didn't even know that I was being pulled over until the police car was literally riding my bumper and with lights on and sirens blaring. Sophie's screaming and crying was drowning out the sirens and proving to be a real distraction form the traffic laws that I should have been following. Anyway, I tried explaining to the officer where I was headed and why...what does Sophie do? She is quietly listening to our conversation the entire time, when at this point my Mom and I were actually hoping that she WOULD cry. Of course I didn't have my purse, wallet, or license...not sure why or how, but I didn't get a ticket...please keep praying for us.

We've still been dealing with Sophie's frustration because of her port. Just yesterday she asked me if her tummy would be "normal" when we returned to Avon Lake. I thought she was referring to her bloated belly, so I asked her "What do you mean?" She said, "will it be flat or will my port still stick out?" I didn't know how to tell her that it will remain there, because her treatment will not be finished once we leave St. Jude. I feel guilty "lying" to her, because in her mind, we'll melt the ice cube, and return home to life as we once knew it...God, I can only dream and pray that is the case.


I really don't have anything new to report. Some days and moments are surely better than others, and for a split second my mind will forget why I am here in Memphis, and then I look at Sophie's face and the pile of pills and medicine on the counter and I am instantly brought back to reality. More than anything I wish that modern medicine would find a cure for this horrible cancer. This is the worst imaginable, and not because we are living it, but because there are so many others out there living it too. Tonight, I ask you to tell everyone you know about this, in an effort to raise awareness about this tumor, and hopefully get the word out as a desperate cry for some kind of legislation that will provide the necessary funds to research this cancer. It just seems like there is not enough being done. For most people, when they think of getting a second or third opinion, they expect to hear something a little different. Everything we read and everyone we talk to tells us the same grim prognosis. Please continue to pray for Sophie's miracle as well as for a miracle for all the other children and families dealing with this monster.

Wednesday March 28, 2007

It's time for an update, and Emily gave me the go ahead. Aunt Sarah arrived Saturday morning, and Jen and Lance wore the apron in the kitchen, making some great Swedish meatballs. They also treated us to dinner from the Spaghetti Warehouse on Friday night --- we all had meatless meals, and they were great.

Sophie loves the weekend, and she had lots of time to draw and design sticker pages with Aunt Sarah. Her latest fun thing to do is make lists in her special notebook with Aunt Sarah --- there's a lot of Emily in Sophie ---Miss Organization. Sophie had Aunt Sarah list all the food, tasks, and necessities for the party she wants to have to welcome back Daddy on Sunday. The sign on the apartment door says "Welcome to the best-ever friends party." There are hand-made pictures all over the walls. (We hope that the paint stays on the walls when the pictures come down.)

Sophie is doing more with her right hand, and Sonya, the OT, said she sees a noticeable improvement. She is walking a little more on her own, and will often allow Aunt Sarah to help with the bedtime ritual. Sophie has become more adamant about not wanting to go to St. Jude's for anything and everything, and fusses quite a bit about leaving the apartment. Her port seems to create the most misery for her --- she won't look at it, and doesn't want anybody else to see it. I still get to cover it with washcloths while she is bathing. However, she now takes baths with her new bathing suit from Jen and Lance. A bath in a bathing suit is better than no bath at all, so that's been the plan.

Emily decided to create a food chart for Sophie to somewhat control the amount she eats. The squares are filled in after each meal and snack, and although Sophie still talks non-stop about the food she will eat each day and each meal, she now realizes that there's a limit, and once the squares are filled in, there won't be anymore food. Actually, the chart system has also made taking her medicine easier. In fact she asks to take her medicine since the reward for taking her medicine has become a special treat, not a square to be filled in on the chart. This new system, plus the fact that we've moved Sarah's crib to the closet (not, as mean as it sounds, it's a large walk-in closet) has helped us settle into a pretty comfortable routine. The food issue consumed a big part of the day, and Sarah's and Sophie's waking consumed a large part of the night. We discovered that my and Frank's snoring was keeping Sarah awake, just as much as her restlessness was keeping us awake. After we moved her crib, she slept through the night, and took two good naps during the day on Tuesday. We are on the second day of the new sleeping quarters for Sarah and she seems to have adjusted quite well. Last night, I watched the monitor until 11:30 p.m., and then decided that she really would be okay. Frank went and woke her up in the afternoon. Aunt Sarah couldn't convince Grandpa that just because it was dark in the closet, it wasn't suffocating.

Emily talks to Marc everyday, and he told her that the Avon Lake and Philip Morris contingency are really working overtime for this Saturday's fundraising dinner. Both Emily and Marc are amazed at the tremendous support they are receiving.

Sophie talks so maturely and openly about her schedule at St. Jude's. Just today Sophie was telling Grandpa about her physical therapy and Terry (her therapist) who said she had to do a good job. Although St. Jude's is not fun for Sophie, she did get a big laugh from a loudspeaker page for her to report to assessment triage since the page was for a "Sophie Qwa-lee."

Emily hasn't posted since Friday, and it's not because Marc took the laptop back to Avon Lake --- she's just been busy and enjoying more fun and play time with Sophie. And Sophie has been busy with her party preparations.

On the medical front, Sophie's steroid dosage has been reduced to 3mg. a day, and Dr. Krasin hopes that on Friday the dose will be down to 2mg. as long as Sophie's symptoms appear stable. Her antibiotics are now being given in a once-a-month IV and she is now getting her first daily dose of steroids and Zofran through her IV during radiation sedation, reducing the amount of meds Emily has to give to her at home, making everyone at the "appointment"(Sophie's first version of apartment) a little happier. Emily says that as she brushes Sophie's hair, she can tell that Sophie is starting to lose some. It's not that blatantly noticeable, but the hair on her pillow is tell tale. Today is Day 16 of her radiation treatment and that's past the half-way mark. We're on the downhill now.

The amazing thing about Sophie is that her mind and her memory are sharp as ever. She observes what each nurse and doctor wears; she asks for cookies from "Miss Cordelia's" (the local store)and just today corrected Valerie, her nurse, who asked her about her picnic at the park. Sophie responded with, "It wasn't at the park, it was at the Mississippi." Her accuracy of expression and attention to detail amuses all of us, and makes us smile when we really need it. She continues to be ever-watchful of Baby Sarah, and makes sure that everybody picks up the little things that Sarah "could choke on." Today when we were all oohing and aahing over the cute frog chair that "jumped into Aunt Toni's basket" and made its way to Memphis, little Sophie was the only one paying close attention to Sarah, as we heard her shout, "No, Sarah!" Just then Sarah was chomping down on a styrofoam packaging peanut from the frog chair. Sophie's a much-needed big sister and a real hoot.

Frank says that these should all be Emily's words, so I think he's mildly suggesting that I not write any more posts. I probably wouldn't want to be responsible for these anyway, since I started this at 3:00 p.m. and I am finishing now at 9:30 p.m. I see why Emily begins late at night with her posts -- fewer interruptions and greater ability to think.

All of us here in Memphis really appreciate the love, support, and prayers that you have sent our way. We are humbled by your generosity and desire to help.

Grandma Miklaski

Walk-a-Thon in Cincinnati, OH

Yet again, more thanks go out to the friends of Marc and Emily. Lisa Nicholson and Julie Kehres, members of the Immaculate Heart of Mary parish in Cincinnati, along with many other ladies of the CRHP teams 44 and 45, and many of Emily and Marc's old neighbors have joined together to put on another fundraiser for Sophie. It is a Walk-a-Thon on the IHM campus and will be on Jun 2 in Cincinnati. The flyer is included above, as well as in the "Events" link on the right hand side of the page. I think this just goes to show how much support Emily and Marc are getting from all the people they have befriended in their many moves. We truly appreciate all the generosity and time that goes into organizing these events. Please see the flyer for more details and contact information.

Thanks again, Lisa and Julie!!

Love,

Sarah

Friday, March 23, 2007

Another week has come and gone. Sophie has now completed 13 radiation treatments, and we are starting to see some small changes which seem to have happened overnight. Sophie has a tiny bit of her smile back; when I say tiny, I mean tiny. She is walking more; still with a limp and off balance, but at least she is willing to try. Her personality and anxiety are improving. She went to the zoo on Tuesday afternoon with Grandma, Grandpa, and Daddy. I stayed home with Sarah who was supposed to be taking a nap so I could get some rest; that didn't happen, but it was good to see Sophie go somewhere without me. Yesterday she went on a walk down to the river with just Grandma and Grandpa for a little evening picnic, even after I said I was staying here. We aren't sure if the changes are because of the radiation, or because we got the okay on Thursday to reduce her steroid dose to 4mg a day. We are leaning toward crediting the radiation with the improvement because 4mg of decadron was the amount that she was taking when we got here, and she was terribly anxious and pretty close to bi polar! I am surely grateful for the little things!

Her sleep habits are about the same. Last night I counted the number of times she woke up in the middle of the night between 10:30pm and 1:00am. She sat up 8 times - either having to go to the bathroom or asking for a drink. She did sleep from 2:00-4:00am though...at least I think she did because I know I didn't look at the clock during those hours! I'm hoping she will start sleeping better as the radiation progresses. She hasn't been as tired during the day so she hasn't taken a nap the past couple of days. There have been times at night when she will agree to lay down without me, and sometimes she actually falls asleep without me in bed with her.

We've had a few delays in the actual radiation procedure due to the increase in the size of Sophie's face. Her cheeks and chin are pretty big. Now when she comes out of recovery, she has little dots all over her face from the mask (which slightly resembles a plastic screen.) She is almost unrecognizable to me. We're hoping that she will begin to lose some of the weight now that we have reduced the steroids, and now that she is moving around a little more. If not, they will do another simulation and make a new mask and realign the radiation points. This would not delay the completion of her treatment, but would require her to be sedated longer.

Sophie had an unbelievable time with Aunt Leslie, and now my friends Jen and Lance are here, and I can hear Sophie cracking up while painting in the other room, and that brings a HUGE smile to my face. My sister Sarah comes tomorrow and will be here through next Sunday. It has been a blessing to have Leslie, Jen and Lance and now Sarah take time out of their busy lives to come here, dedicate their time to making Sophie laugh, and offer to help in any way. Again, God is showing us his love through others.

Marc went home to Avon Lake to work for a week and to take care of all the things we had left unfinished when we dropped everything to come here. He will stay there through next week end so he can attend the K of C fundraiser on March 31 and then will come back for the remainder of the treatment. Say an extra prayer for Marc, who has said it has been extremely hard to be back home and to see all the pictures of our old Sophie all over the house. I think it must be so difficult to be there alone with no kids demanding his time 100% of the day. We can't wait to have him back.

Sophie is still having a hard time dealing with her port. Even during the week when it is accessed, she'll cry at just the thought of having to lift her shirt. This breaks my heart because she gets so nervous and self conscious. The needle was removed after her radiation this morning so I thought she would be excited to really get in the tub. She wasn't, and it took us convincing her that she could wear her swimming suit and pretend she was at the beach to get her to agree. I keep thinking that she will get used to the idea of the port, but she seems to be getting worse.

Right now she is talking about all the food she can eat in the morning because it is Saturday and she doesn't have to wait to eat. So unfortunately her appetite is still insatiable. Again, we are hoping that the reduction in steroids will help; she continues to want to eat and eat until she is stuffed. Grandma introduced Sophie to a "special candy bar" - PRUNES! We've really pulled the wool over her eyes; she continues to eat them which has been helping her digestion.

We are grateful for all the kind thoughts, words, and prayers, as well as for the packages that continue to come in the mail. We definitely still need the prayers; they are getting us through the days. Please say an extra prayer that these wonderful doctors and researchers will be filled with the knowledge to find a cure for this horrible disease, so that Sophie and all the other children suffering will be cured.

Sophie's Story and Picture Album Added

We added the "Sophie's Story" link as well as a "Picture Album" link to the right hand side of the website. We wanted people who are new to the site to get an idea of what it is all about. As for the pictures, many are repeats; we will get some new ones once we get access to Emily's computer at home where all the others are stored.

Hopefully I will get a chance to give a longer update later, if I choose not to go to bed. Now I really think I am hitting the wall as far as fatigue goes.

The above picture was taken the very first week end that Sophie threw up. In fact, we weren't sure if the Segedis should come visit because we didn't know if Sophie had a virus. We're glad they came and Sophie had fun with Alayna.

Thanks for the prayers, thoughts and well wishes, and for caring enough to read this blog.

Monday March 19, 2007

The irony of this picture. It was in September of 2006. Sophie was probably experiencing symptoms already, as she was taking a nap; something she hadn't done in quite a while. Marc put Sarah in bed with her...Sophie didn't wake up. Notice her shirt says, "Life is Good." Oh how it was...

Before I sat down to post, I was just finishing my attempt at giving Sophie her last doses of medicine. Four different things to be exact. We've been trying sorbet, because now she has decided she hates applesauce. Being the smart girl she is, she took one bite and said, "What is IN this?" We got most of it down, after a lot of convincing, but it left me wondering if she really got the entire dose, and also feeling guilty for forcing her to take something that has no guarantees. I heard God speaking to me when I opened my email and read the weekly bible wisdom that I subscribe to and it said,

"You stand tallest on your knees."
"Wisdom is to do now what you will be satisfied with later."

I sure hope we are satisfied with the results of forcing all this medicine down Sophie's throat.

Anyway, we now have 9 radiation treatments under our belt. Still looking for some major sign that the treatment is working. We've noticed that Sophie's right eye is looking a little lazy; more so when she is tired. This worries us because the right side of her body is where she is having the weakness. Still no change in her coordination, but one good thing is that she hasn't thrown up since our night visit to the hospital last Thursday (and that wasn't really due to pressure anyway). Her mood remains better. She is still very lethargic, although she didn't nap today. I'm sad that she no longer looks like Sophie. Her belly, cheeks and chin are big and swollen.

This morning's PT appointment and re access to her port were NOT fun, and I can't say the process is getting any easier. Well, maybe recovery is better...I have to be optimistic about something. We are back on the laxative after a few days off because her body seems to need a little boost.

Tomorrow we have a 7:45 radiation treatment. We'll be up extra early because Sophie needs a bath. I just didn't have it in me to force her into the tub tonight. I should have just gotten it over with because I know the morning won't be any easier. Tomorrow we will meet with the oncologist to see if we can drop her down one more milligram of steroid.

In my thank yous last post, I forgot to mention the students and staff of Bay Village High School who raised money for Sophie. Marc's Aunts, Donna Quayle and Margaux Hamilton, rallied their 2 Bay High seniors Christian and Dave (with the help of the principal Jim Cahoon) to raise money to make a contribution to Sophie's fund. We thank all of you for your efforts. You can't even begin to understand how grateful we are.

We realize there are many of you out there working to raise funds on our behalf, and we sincerely appreciate your generosity. We hope to be able to recognize each of you because you mean so much, but for those of you who we don't know, we are still just as grateful.

My sister Sarah contacted a homeopathic doctor from India that does some work in the U.S. We are hoping to meet and talk with him and start a course of treatment that will make Sophie's time with us as good as it can be. But this treatment is expensive and not covered by insurance. We will continue on with our treatment here at St. Jude and are confidant this is the best place for us now, but we want to keep all of our options open. Marc told me today he wants to become the expert in homeopathy, so that we really can make the most of our time with Sophie.

I've been a little sad lately. I watch little Sarah and how she is moving around, and the tons of energy that she has. It make me angry that Sophie should finally be enjoying her company and moving around with her, but it is Sarah who actually is moving and doing more than Sophie. It has been hard for me to appreciate the radiation, knowing that if we do follow in the foot steps of those with Sophie's diagnosis, our time after radiation is short. More than anything I wish I could stop time and stay in the here and now. No better, no worse, just with Sophie.

We thank you for your kind thoughts, cards, gifts and prayers, and ask for your continued prayers. He knows how to best answer these prayers. I always think of a sign my parents have at the cottage. It says, "God answers all prayers. Sometimes He says, 'Yes' other times He says, 'No' and sometimes He says, 'You've got to be kidding.'" May He say "Yes" to our prayer request for a miracle.

Saturday, March 17, 2007

Thursday night Marc, Sophie and I went to dinner at Applebees (Sophie's new favorite place) with Nana and Papa and Grandma and Grandpa stayed at the apartment with Sarah. As those of you who have, or have had an 8 month old would know, eating out with Sarah is definitely a chore, so it was nice for us to get some time to spend with Sophie doing something other than doctors' appointments. Sophie wanted her usual chicken fingers with fries and a hamburger. It is still hard to watch her crave all that food, and even harder to tell her that she can't have it. We gave in and let her get both, but I'm happy to say she didn't eat all of it! She was in pretty good spirits, but was tired as usual by 7:00.

We've still been dealing with the challenge of baths on days when Sophie has her port accessed. Friday morning was no exception. If I was smart, I would get it over with at night, but Sophie fights it, and I just don't feel like battling her, so I always give in to her requests to "do it in the morning." Not only does Sophie hate the tape that we use to cover her port with the ziploc bag, but she has also become very self conscious of the fact that it is there. Grandma's job has been to kneel over the tub holding a washcloth over the bandage so no one (including Sophie) can see it. That breaks my heart. She hasn't looked in a mirror lately (at least to the best of my knowledge) but I'm sure her poor little self would be mortified by the way she looks. Sophie has always been particular about how she looks, and I'm sure she would be disappointed at how different she appears.

On Thursday before sedation we decided not to do the vercid (I don't know if I am spelling this correctly). This is the medicine that they have been administering to her before sedation/radiation each day that relaxes her so she is not anxious about going into the radiation room. She had been saying that the medicine made her dizzy (a normal effect) so we wanted to see if she would be different without it. She was great on Thursday and came out of radiation fine. Friday was a different story. Maybe it was the tub experience prior to leaving for the hospital that made her grumpy, but she wanted nothing to do with the radiation nurse. We managed to get her sedated without the vercid, but she was crying and didn't want me to put her down. I still hate when I watch her body go limp and when I kiss her before I leave the room. She woke up quickly from the sedation; even before they had removed the needle, and was anxious to sit up. The good thing was she agreed to sit in the wagon for the ride to the car, because she usually demands to be carried. On the way out, hospital volunteers were setting up St. Patrick's Day crafts and such, and Sophie was so torn in deciding whether or not she wanted to do the activities or go back to Grandma's "Appointment" as she calls it. We could tell she was tired so she decided on having her nails painted green while she remained in the wagon. It made me excited that she was a little like her old self in wanting to have her nails painted.

She was very tired on Friday, and asked to lay in bed 3 different times. Sometimes she wanted to sleep, other times she wanted me to scratch her back or just talk. I love that she still says her funny Sophie things. I need to start writing them down, because when I try to remember something funny she said, I can't. The resting must have helped, because at 11:00pm she was wide awake, as was Sarah who wanted a bottle. The four of us sat on the couch as a family. Sophie seems to be a little less clingy. She allowed Marc to lay down with us and rub Sophie's head, so that is progress. As we lay there, I would start to fall asleep and I would think she was sleeping and she would roll over and say whatever was on her mind. Last night it was, "I think we should have another baby." and "Grandma's hair is going to look funny again in the morning." I just squeeze her and tell her I love her.

This morning I convinced her to go back to bed when she woke at 6:00am and she actually slept until 7:00am. She is still getting up every hour to go to the bathroom or tell me that she is hungry or thirsty. But last night she slept the longest stretch yet 4:00-6:00am. I needed that.

Today, Sophie had one of her best days. I have yet to decide if she was just so excited for Aunt Leslie to come (they played and belly laughed all day) or if her reduced dose of decadron is helping with her moods. Sophie went on a stroller ride - an hour and a half one at that - with Grandma and Aunt Leslie, and didn't seem to mind that I wasn't going. They walked to the Mud Island store and had a chocolate chip cookie and lemonade and laughed, played and collected the sticks the whole time. I am so glad for that. In fact, when Sophie came back, she told me that she had fun on the walk. I don't think she has said anything was fun since we have been here.

As far as Sophie's symptoms, she is still not using her right arm and hand. But Aunt Leslie tells me she started using her right thumb a little while they played. She is still walking with a limp. It's hard to describe. It seems like her right leg is asleep, so she just drags it with somewhat of a locked knee. Her eyes seem a little crossed and at times she seems dazed. I can't say that she is any worse, but still not much better. Her face looks puffy and her belly bloated. Hopefully we will see improvement from now on. I've heard that symptoms can get really bad before they get better and I don't think Sophie is as bad as some of the cases I have read about. Please pray that we only see improvement from this point forward.

I want to take the time to thank some people what have been raising money for the Smiles For Sophie account. The owner of Sophie's preschool organized a raffle that I had no idea about until I received the following mass email from the ALPPTA of which I am a member. I'm sure the person responsible for sending emails didn't think to exclude me from the over 100 members who she was sending it to.

Smiles for Sophie Raffle Tickets!

Just a reminder for all of those interested in purchasing a raffle ticket to help Sophie Quayle, Carroll Middlemiss will be selling Smiles for Sophie Lottery Raffle tickets at the next general meeting on Monday, March 12, 2007. Carroll will be at the library beginning at 6:30 pm and will have a table set up as you enter the Gallery Room of the Library. Price of the tickets are $10.00 each with the opportunity to win $50.00 every lottery day in the month of May, 2007. The winning ticket is determined by the Ohio Lottery three digit number drawn each day. Cash or checks will be accepted.

100% of the profits are going to benefit Sophie Quayle and her family! The goal is to raise $9,000 to assist the Quayle family. As always, your support is greatly appreciated.

I would also like to thank the Riverview Community School District for raising money for us through their "dress down days" and especially the high school for raising over $3000 with the jar wars. We are so grateful and so humbled by the outpouring of love and support by those of you who we know, and by those of you whom we've never even met. Thank you thank you.

Marc and I have been reading way to much on the web about all the families that have been through, or are still going through the same horrible journey that we are. We have now joined the ranks of those parents who are appalled at the lack of research being done on this type of cancer, and feel so helpless and angry about the prognosis we have been given. Please tell everyone you know about this tumor so that maybe somehow, something will be done. Please continue to pray for Sophie's miracle and for all the families who are facing this horrible diagnosis. We thank you as always for remembering us in your prayers.

One more note; many have asked if we ever found the girl who needed a package. We haven't. Say an extra prayer that we may see her again in the mail line. We plan on carrying her package with us everyday when we go to the hospital until we see her again.

Monday-Thursday are very busy days for us, but I will try to update as I can. We appreciate the support from those of you who are committed to following us on this journey. Pray today for Sophie, and for all the other BSG patients who are hoping for a miracle.

Trenton's City Wide Garage Sale

Every year, Trenton has a city-wide garage sale, and this year, Susie Goreta, Michelle Vellmure, and Libby Shumate have joined together with other neighbors on Lenox Street, to donate a portion of their sales to Smiles for Sophie.

The garage sale will be on Saturday, April 21st. In addition, if you aren't participating in the garage sale, but have items you'd like to sell, you can drop those off at 2637 Lenox by Friday, April 20th.

If you have any questions, please call Susie at 362-8337 or Michelle at 671-5508.

As before, you can click on the flyer above and save, print and post it wherever you'd like!Thanks ladies, for organizing yet another event and for the attached flyer!!

Sarah

Thursday March 15, 2007

This is one of my favorite pictures of Sophie. We used it for our Christmas card in 2005.

Sophie has been continuing her radiation and has done pretty well. She is even getting used to not being able to eat in the morning. Of course she still wakes up saying, "I'm hungry." But I have been telling her, "Today Dr.Gajjar says we need to wait until __ time to eat so that ice cube can melt faster." Not sure why, but she believes that and has patience. Telling her that, along with the fact that we talk all morning about what she will eat when she can, as well as our adoption of the philosophy, "if Sophie can't eat, no one can eat" has seemed to help. After Tuesday's radiation, they took some "pictures" to make sure that nothing has changed that would effect the placement of the radiation beams. It is reassuring to know that she is constantly being evaluated for change. The doctors won't do another MRI until the completion of radiation because they said that the initial radiation treatments tend to "anger" the tumor as the cells die, so an MRI might indicate that the tumor looks worse even though that isn't truly the case.

We have a few more PT appointments under our belt, and Sophie does well with the "games" they play, although she tires easily. She usually cries and does not want to participate, but the therapists do a nice job trying to make the therapy fun, and we are hoping to make progress with her leg and upper body strength. We also finally made it to her OT appointment, and the therapist said that we shouldn't splint her thumb because it didn't look "that bad" and that a splint would limit the use of her entire hand. She asked us to describe how much Sophie has been doing for herself in the way of walking, eating and dressing etc. It was quite an eye opener because I hadn't realized just how much we are doing for her. She wants to be carried, fed and dressed by me about 90% of the time. The therapist showed us ways to encourage Sophie to be more independent even though that is the last thing she wants to be right now.

We are excited that we have gotten permission from Sophie's doctor to reduce her steroid dose from 8mg to 7mg a day for the next week, and then if all goes well, we can drop it another milligram or maybe even 2 next week. We are anxiously awaiting some improvements in her symptoms so that we can be reassured that the radiation is working.

Again, we are grateful for all of your thoughts, prayers and sentiments. We also continue to appreciate the gifts that many of you are sending. It hit home just how many people love Sophie when Marc went to the mail room the other day and the ladies working just laughed. Every single package that they had received that day was for Sophie. I think there were 7 that day, 4 yesterday, and today there were 8! We are so fortunate, and realized that when another Mom who was with her daughter (a little girl Sophie's age) saw Marc in the mail line with all the packages and said, "Weren't you down here yesterday getting packages?" When Marc smiled and said, "yes" she went on to tell him that she has been here 2 YEARS with her daughter, who has had 3 transplants and is now in remission, but has yet to receive a package! Marc felt so bad, and when he came and told me what had happened (as I waited with Sophie in the waiting room for her next clinic appointment) I was so tempted to tell him to take some of the packages back down and give them to that little girl. The guilt of not seeing what was in each package and not being able to thank the appropriate person overcame me, and I changed my mind. This morning we put together a little package of our own to take to the mail lady in hopes that she might remember the little girl who I am referring too, but she didn't. I am still feeling bad about that.

We also want to thank those of you who are organizing fundraisers. We cannot believe the support and are utterly overwhelmed by the number of people in the Avon Lake/Avon and Trenton, MI area who have offered to help, and also overwhelmed by those who actually are finding ways to do so. Everyday we hear something new that somebody is doing. We are oh so grateful. Words cannot even begin to covey our gratitude, so we thank those of you who have helped in big and small ways. It is all the same to us!

Marc's parents came last night and will be here until tomorrow morning. It was nice for Sophie to see them and play with them and open the gifts they brought, and it gave my parents a chance to come with us to Sophie's appointment this morning and see St. Jude's since they have been stuck here at the apartment with Sarah the past couple weeks. We still realize every day how blessed we are to have my parents here to help as I watch the families that bring their little ones along as the older ones are being treated; and I feel lucky to know that Sarah isn't confined to a stroller all day, and that she can eat and sleep on somewhat of a normal schedule. Sarah, by the way, is finally adapting. She has started sleeping a little better and her runny nose and congestion are really improving. Maybe it's the prayers, because neither one of my girls have ever had a cold that lasted less than a week, and Sarah was only under the weather for 3-4 days. I was reading a "Letters From Heaven" book today that the ladies in my Cincinnati subdivision sent me which said, "Allow one bright pinpoint of light to enter your darkness. Allow one brilliant ray of hope to penetrate your gloom." Today, Sarah's health and the reduced dosage of steroids for Sophie are my rays of hope. We thank you from the bottom of our hearts for your prayers and support. Please continue to keep sending those positive thoughts and prayers to God so that we may be granted Sophie's miracle.

Tuesday March 13, 2007

We passed another week end here at St. Jude's. We had an appointment on Saturday morning so the doctor on call could check on Sophie's stomach. The wait to see the doctor was longer than the appointment. The doctor took one look at her and said she looked and sounded good. We then went to Babies R Us to look for a stroller since we couldn't find one at Target. We decided to buy a jogging stroller because it holds up to 50 pounds, and that was the only one strong enough to hold Sophie now that she weighs 40 pounds. We ended up buying the floor model because they had no more in stock, and Sophie enjoyed testing out the stroller in the store.

This week end was nice to be able to give Sophie a bath without having to tape saran wrap and bandages all over her port. She HATES the tape, and that makes it difficult to bathe her without getting the port wet.

We never made it to the zoo. We should have though because the temperture was close to 80 and sunny and gorgeous. But after church and stopping to play at the Ronald McDonald House playground, Sophie was just too tired and needed to nap. The radiation makes her really tired and we think she was still recovering from the night of no sleep on Thursday, and the hour we lost on Saturday.

Today we completed our fifth radiation treatment. I wish I could day that Sophie is getting better about the sedation, but she still fights it. Monday she had the port reaccessed after the week end and she did okay. She calmed down a little when I promised her she wouldn't have to be poked again for 7 days. Usually when the nurses come at her with the alcohol pad or the flush, she instantly starts saying, "close my shirt, is it time to close my shirt?"

I wish I cold say I kept my promise - while we were sleeping on Monday night, she rolled over, woke me up and said, "I think my port came out." So I lifted up her shirt, and there it was, needle and all. Need less to say we had to have it reaccessed this morning for radiation sedation and then blood was drawn for labs. Sophie was NOT happy this morning. We had physical therapy and she tired easily, but did brighten up for her oncology clinic appointment.

Her digestive system is working much better. We have been continuing to give her the laxative daily so that we don't have to worry about tummy aches. She still has a pretty good appetite despite the radiation that normally causes the side effect of appetite loss. We are trying to find high fiber tings for her to eat, but like most 3 year olds, she isn't crazy about broccoli.

It's hard to tell if her symptoms are getting better because she is so tired. She'll take a few steps and then want to be carried. Her right foot seems to be turning in a little and her right hand is still weak. She is definitely showing the weight gain in her face and belly, resembling kids who have been on steroids for a while. On the up side, I thought I saw a tiny corner of the right side of her mouth move when she smiled at her clinic appointment. We are told that she should show noticeable improvements of her symptoms by the end of the second week of radiation - that means by next Friday. We are excited that the radiation is progressing, but the feeling is somewhat bittersweet; knowing that after the treatment, relapse usually follows, and can be as early as 6 months post radiation.

Sometimes, it is hard to be happy, and other times, I'm surprised that I am able to function normally. On Saturday Sophie said, "I'm not sure I want to turn five. I only want to go to kindergarten if you can come with me." I instantly thought that it's realistic that she won't go to kindergarten and it made me so sad. I lie next to her in bed each night and rub her back, hoping that the power of my love could melt that ice cube. Sometimes I can't believe that there is a big tumor growing in her pretty little head, and I start to wonder just how long it has been there doing it's damage. I also find myself feeling guilty at times for not seeing the symptoms sooner, even though I know it wouldn't have made any difference in her prognosis. I get angry at myself for being so impatient when she didn't want to dress herself, or go potty by herself. I feel guilty that I listened to those people who said it was a phase, and I feel guilty for being so frustrated when she woke up so many times night after night. The only thing that gets me through is giving my feelings to God. That is the only explanation that I can think of for me being able to function as well as I am - that and all your prayers and support. I just keep telling myself over and over, that whatever is meant to happen has already been mapped out by God, and all I can ask for is the strength to deal with whatever God gives me. I try to remember all the fun times we have had and all the wonderful memories that are stored in my mind. I look forward to a healthy summer of more happy memories and just try to take one day at a time. Please contimue to pray for us, we need that day to day support.

Euchre Tournament

Thanks to Libby Shumate and Michelle and Jim Vellmure for organizing this event.

They did a great job with this flyer so I wanted to post it again here. I know it's still hard to read all the fine print, but below is the pertinent info. As before, you can click on the flyer to see it "larger" and also print/post it wherever you would like.

Thanks again, Libby, Michelle and Jim!!

Sarah


Euchre Tournament

Saturday, April 21, 2007
7:00 pm

Mr. Nick's
1926 West Rd
Trenton, MI

$20 per person

RSVP by April 14th to Michelle and Jim, 734-671-5508 or vellmure@sbcglobal.net

Call now...only 80 spots available!!

Carrabba's Fundraiser - Save the Date!!

Save the Date!!

Fundraiser Luncheon For Sophie

Carrabba’s Italian Grill
14805 Dix-Toledo
Southgate, MI

June 16, 2007

Just wanted to get this information out now so everyone can pencil it in on their calendars.

Andrea Segedi is the point of contact for this fundraiser, and is currently putting the finishing touches on the event. We will soon be posting a flyer with the specific details, as well as information on how to buy tickets.

All proceeds will go to the Smiles For Sophie benefits account.

Please stay tuned for further details and information. If you have any questions, please contact Andrea at allefevre@hotmail.com.

Thanks!!

Sarah

Spoke too soon...

It is Friday night as I sit down to write this, and most likely it will be Saturday before I get it posted because this is a long one...

One second after hitting "publish" on Thursday night's post, and letting you all know that things were running smoothly, Sophie woke up screaming that her tummy hurt. She was moaning and crying and climbing all over me. I could not console her - my Mom called ST. Jude's and spoke to the doctor on call, and he said bring her in. Somehow, I managed to calm her down and she fell asleep before my Mom relayed the doctor's order. So, we called back and asked if we should wake her...he laughed and said no, and that she must not be in too much pain. 5 minutes later, she was back at it again, and when I felt her stomach it was bloated and as hard as a rock. My Mom, Dad and I drove Sophie to the "Medicine Room" at St. Jude's. (Marc was at the Ronald McDonald House with Sarah who has managed to get a cold. She's been pretty miserable and is having a hard time eating and sleeping because of the congestion.)

Sophie continued to act as though she was in excruciating pain; in all of her 3 and 3/4 years, I had never seen her act that way, so I was getting nervous. They took her vitals, and her blood pressure was quite high. The doctor came in, ordered a morphine drip for her port, as well as a stomach x-ray. He said it most likely seemed like gas, but wanted to be sure there was no obstruction. She calmed down a little from the morphine but her blood pressure was still high. We kept asking her if she needed to throw up, since she is pretty good about letting us know these days, and she repeatedly said no. Shortly after waiting in the room for the x-ray tech to be ready, Sophie said she needed to throw up. The nurse grabbed the pink pan, and Sophie threw up more food than I thought her belly could hold. It was gross, she was sitting on my lap, and my Mom was wiping her face and gagging at the same time. I kept thinking, "Please God, isn't this enough?" Thinking of how Sophie needed me to be strong was all I could do not to breakdown and sob. Sophie immediately said she felt better, and then she started to act sleepy and a little loopy from the morphine and made me smile with the funny things she said. We went for the x-ray, and again, she was so brave. Laying down on her back on a hard table was scary for her, but she managed to relax long enough for the tech to snap the picture that she needed. Her x-ray of her chest and lower abdomen came up on the computer screen and we were showing Sophie her tummy and ribs, and her port. She just looked, and then all of a sudden she said, "There's my vagina!" Leave it to Sophie...the tech got a kick out of that one!

From the x-rays, the doctor was able to determine that Sophie's belly was blocked up. He pointed out the stool in her intestines and the gas and food in her stomach. Basically, she was holding as much food in her as she could, but none was going anywhere, so she vomited to get rid of the food that wasn't moving through her GI tract. NICE. He prescribed a dose of laxative, and then said he would order her a 24 hour dose of her anti nausea meds and then her nightly dose of steroid to be given in her IV so that we wouldn't have to do the doses when we got back home. It was about 11:15pm at this point. While waiting for the IV hook up, and the medicine drips, Sophie threw up yet again. This time it was the few sips of water that she had just had. She fell asleep on my chest while receiving the medicines. We left the hospital with a very sleepy Sophie and two prescriptions; one for the laxative and one for Tylenol with codeine. At times it is hard for me to feel good about pumping all this medicine into her body.

She didn't want to drink the laxative when we got home, so we let her sip it all night. She wasn't in the mood for the nightly picnic we had been having, and I was anxious because I knew she wouldn't be able to eat after 2:00am because of her radiation scheduled for 10:00. She also did not want to lay down. She kept saying she was dizzy and insisted that I sit up in bed and she sit up against me. She finally fell asleep like this around 2:00am and then at 4:00am I was able to lay her down next to me where she slept until 5:45am. We were all exhausted!

By 7:00am, she was saying she was hungry. She had a little jello and a Popsicle and other clear liquids with her meds until 8:00am, but still was hungry, and grumpy.She sat on the couch in a daze until it was time to go for radiation. While waiting for her appointment, she fell asleep again in my lap, and then again while waiting for the sedation team. She continued to say she was dizzy and that she wanted to sleep. She fought the anesthesiologist a little bit, but couldn't fend off the sedation drugs, and went to sleep for her radiation.

While I waited for them to call me back to recovery, I noticed a family of a little girl who I knew was being treated at St. Jude's for a DIBG just like Sophie. I recognized this family from the prayers from Maria website. The little girl's name is Madeline Adams. She too is 3 years old, and just finished her radiation last week and was back for a follow up MRI. You can read her journal at caringbridge.org. I talked to her father a little bit, which was a comfort in an odd sort of way. Marc met me in the waiting room after loading a wagon full of packages from the mail room into the car, and he joined in the conversation while I went to the recovery room to get Sophie.

Sophie was especially groggy today and so sleepy in the recovery room. She didn't want to wake up, and I could hardly understand what she was saying as she came out of the sedation. She didn't even want the Oreos that the recovery nurses have been giving her the last couple days. She didn't want to put her clothes or shoes back on and she was pushing me away and pulling me to her at the same time. While this was happening, our oncology team got word of our stomach experience the night before, so they wanted to squeeze in a clinic visit before we left the hospital - so much for our easy day...

Our oncologist said Sophie should have an enema so that she would have immediate relief. I forgot to say that during the entire clinic visit she slept on my lap so now we had to wake her for the enema. Sophie's nurses were so kind and figured out a way to give it to her on while she remained on my lap; only after they had covered me with hospital pads and blankets! Again, Sophie amazed me at how well she cooperated. We briefly told her what would be happening; she wasn't excited, but still did pretty good. I'll spare you the rest of the details; the enema worked and you get the point. After all was said and done, I was sure relieved that we did it. Her tummy immediately softened up, and she said it felt better.

The OT appointment was canceled again - too much for Sophie in one day. We came home, took a short nap, resumed our medicine regimen and Sophie seemed more like herself. She was definitely tired, but her mood was okay. She had some lunch and opened her packages. We all shared a few laughs and she went to bed pretty good at night.

Now it IS Saturday morning, and I am just finishing. We now have a short clinic appointment at 10:30 as a followup for her stomach issues...hopefully tomorrow we really WON'T have to go back. Her radiation on Monday is at 9:30 so it is getting earlier which will help with the no eating. It was funny this morning, or sad actually. Sophie asked for jello when she woke up, because she has gotten used to that being the only thing she can have. When I offered her eggs, she looked like she had won the jackpot!

Thank you all for your continued prayers, support, words of wisdom, cards and gifts. We do appreciate it, and it helps us get through the days. We've had a few moments of despair and fear lately, but then we remember all the people who are rooting for us and it helps us to be strong. We really are hoping to go to the zoo on Sunday because the weather is one thing that is perfect; and we must appreciate God's little miracles.

Day 11 of HOPE

Wednesday was a busy, but good day. I didn't write an update though because I finally am feeling the effects of 2 weeks with very little sleep, and decided to call it a night at 9:00, and Sophie and I went to bed.

On Wednesday we started the day at 8:30 with a PT appointment - Sophie did really well. Her job was to pick up a checker with her right hand, climb three steps starting with her right foot and then put the checker into a Connect Four game, then go back down and get another. She figured out how to put enough pressure on her thumb to hold the red checker, and I was so proud. After about 20 times, she was getting tired, but managed to put all the red ones in!

Following the PT appointment, we met with the oncology team for a follow up visit, then had an eye appointment. Sophie had her vision checked, her eyes dilated and then an eye exam. It was good news that her vision is what it should be for a "normal" kid her age, and that there was no visible damage to the eye nerve. (We didn't expect there to be, but never the less it was good to hear that nothing else is "wrong.")

After the eye appointment, we met with the radiologist again before taking her back for sedation and her very first radiation treatment. I watched the radiation treatment on a computer screen from another room. It was informative, but scary too; pink cage/mask covering her face, the oxygen mask over it, her eyes taped shut and her tiny little body strapped to a table in a room by herself because it is not safe for others to be exposed to the beams, was not a pleasant sight. The good thing is that the treatment itself only lasts 15 minutes, but waking up from sedation is the tough part.

We were scheduled for an OT appointment at 2:30, but we asked to cancel it because we felt that Sophie had already had a long day. No problem they told us, but we are hoping to reschedule it so that Sophie might be fitted for some sort of splint that will keep her thumb flexed.

When we got back to the apartment, Sophie took her usual 45 minute nap. Her new favorite things is for me to scratch her back. Just when I think she is asleep, she will wake up and say "scratch", or "scratch harder" or "scratch faster" or "scratch slower." I usually do it until my arm is numb, then I tell her, I'll start again in 5 minutes after my arms rests. The whole back scratching lasts longer than the nap, but it's worth it! In fact this morning when I begged her to stay asleep because my head was pounding, she told me "Roll over and pull up your shirt, I'll scratch your back."

After she woke, she was in a great mood, laughing, and playing and listening to stories with Grandpa. She was a lot more receptive to others and we all commented on how well she seemed to be doing. It was such a nice change of pace. She has been wearing her electromagnetic shield and her St. Anthony medal around her neck, and on Wednesday we added the Fr. Solanus scapula to her pink leather string. I have to believe those things are helping!

Wednesday was also the first day of Sophie's medicine regimen. In addition to the 4mg of decadron and the 15 mg of prevacid that she takes twice a day, she now needs to take 100mg of zarnestra in the am and 75mg in the evening, along with a liquid anti nausea medicine that she takes every 8 hours. On Friday she will begin taking the septra antibiotic that she'll take 3 times a day for 3 days a week. We have been mixing the meds with applesauce, jello, Popsicles, and ginger ale. Sophie has been a trooper most of the time, but can still be resistant when she is feeling grumpy.

Here we are back at the apartment on Thursday, after completing another PT appointment, 2 clinic visits and her second radiation treatment. Sophie did well again, and Marc watched this time. His reaction was the same as mine. Sophie looks so helpless, but we know that this is what will give us more time with her.

Sophie had another awesome mail day. She gets so excited opening the packages, and she told me, "If there is wrapping paper, it must be for me." We really appreciate those of you who took the time to shop and choose things that you know Sophie will like. It makes her day, and so it also makes ours!

The weather here is still beautiful, and we are planning on finally taking our trip to Target to find a stroller that is big enough to hold Sophie so we can venture to the zoo and museum this week end. Baby Sarah has enjoyed her daily walks with Grandma, but our current stroller is not big enough for Sophie.

We have 29 radiation treatments left! Tomorrow we have a 10:00 radiation appointment, and then the OT reschedule in the afternoon. We are looking forward to an earlier radiation appointment, so Sophie can eat sooner, and also to a relaxing week end.

We have been so lucky to have my parents here. Marc and I were just saying that it has been amazing. Our clothes seem to magically get washed, dried and folded. All the groceries are bought, we don't worry if Sarah has formula or baby food, or if her bottles are clean, we get warm meals served, trips up and back to the hospital, and constant offers to help and do whatever we need; even things we don't need, or know that we need. Ask God to remember Mom and Dad in your prayers too. Please keep the prayers for Sophie's miracle coming, they are helping us get through the days.

Little Gym Fundraiser

I couldn't quite figure out how to make and attach a flyer like Elizabeth did for the K of C fundraiser (the file can only be .jpg, .gif, etc), but I wanted to get this information out here too, so more families in the Avon Lake area would know about it.

Kristin Van Euwen organized this fundraiser and is the point of contact for reserving spots. Thanks Kristin!!

Her original flyer had a portion on the bottom that was to be filled out and returned to her via mail. I will print the info below, and if you are interested in attending, please write down the information on a separate piece of paper, filling in the appropriate lines, and mail to Kristin. Thanks!!

Sarah

Celebrate Sophie!

A fundraiser for Sophie Quayle


Please join friends of the Quayle family for an open gym, raffle/auction, cookies, juice and fun! 100% of the proceeds will be donated to the Quayle family to help with expenses as Sophie battles a rare brain tumor.


Where: The Little Gym of Avon
2100 Center Rd. (Route 83)
440-934-0494

When: Friday, April 20th 6-7:30PM; Sunday, April 22nd 3:30 – 5:00PM; and Friday, April 27th 6-7:30PM

Cost: Minimum donation of $10 per child


(Please detach and remit with payment)

Name____________________ Phone________________

Number of adults_____ Number of children_____

Check number________ Amount of check_______

Date you would like to attend: Friday, April 20th___ Sunday, April 22nd___
Or Friday, April 27th___

Please make checks payable to Smiles for Sophie and send them to Kristin Van Euwen at 595 Treeside Lane Avon Lake, Ohio 44012. I will call you to confirm receipt of payment and spot at the fundraiser. Please check in at the door the day of the event. Space is limited so please respond early.

For information on the event please contact Kristin Van Euwen at 440-930-5714 or by email pkvaneuwen@oh.rr.com

Day 9 of Hope

Today was a pretty smooth day until this evening, but I will get to that. We started the day at 2:30am. Sophie got up for her usual hourly waking, and I decided that we would have a little snack since she wasn't going to be able to eat. We had a mini picnic of toast, juice and pineapple. She seemed shocked and certainly excited that I was offering her food in the middle of the night - probably because I usually beg her to please go back to bed. She then went back to bed, and after a few more wakings actually slept in until 7:00am, which was a record!

We had our first appointment at 10:30, so before heading over to St. Jude's, we packed up everything at the Grizzlies House and prepared for the transition to the Ronald McDonald House. Sophie held up pretty well with the hunger, and we kept her on a steady diet of jello, Popsicles, and apple juice right up until 11:00 which was the time limit for clear fluids. It wasn't until 11:30 that she started getting particularly fussy, but everyone else was too - we all wanted lunch!

At 1:00 we headed over to the radiation clinic. The sedation and films were uneventful. I still hate seeing her put to sleep, but am getting used to the process at least. I met with the radiologist while Sophie was sedated and while Marc moved all of our luggage to our new home and went to the 45 minute orientation. The radiologist is a very kind man who explained everything and answered all my questions. You could tell he wishes there is more he could do for Sophie. He told us that after tomorrow we will have 30 more days of actual treatment! The countdown begins! We came home with a huge bag of medicines and medicine schedules. I'm hoping that Sophie cooperates. She has been pretty remarkable so far, but adding 4 more medicines is enough to make my stomach turn!

Sophie had the same hard time during recovery; whining and only wanting me. Marc met us at the hospital and he went to the recovery room alone while I waited outside to see if Sophie would respond better to him if I wasn't there. He said she didn't stop crying for me and at first she didn't even want the male nurse, who was holding Sophie, to hand her over to him. (Does that sentence make sense?) I feel bad for Marc;he feels helpless. I know he wishes that Sophie would go to him, and so do I. Pray that we can somehow overcome the effects of the steroid so that Sophie and Marc can have the fun and trusting relationship they once had.

After the day at the hospital, Sophie came home and ate a huge lunch and seemed satisfied. We took a short nap together, and then woke up to an exciting mail day. Sophie enjoyed opening the packages she received and it warms my heart to see her excited about something. It truly makes her day and means so much. She has seemed so sad and miserable lately, and when she does smile or laugh it makes me forget about everything - if even for a second. We too appreciate all of the cards and wishes that many of you are sending. We read each one, and try to focus on the positive thoughts and scriptures that many include. Again, we thank you for the prayers and thoughts.

Later this evening, Sophie wanted some fruit and we gave her some watermelon, berries, pineapple and strawberries. She ate them okay, but shortly after became extra clingy and said she was tired and her tummy hurt. Then the salivating began followed by vomit, vomit and more vomit. It scares me to see her so scared. You can tell she tries so hard to fight the urge, but just can't, and consequently she is wiped out afterwards. We got her to drink some ginger ale, and offered her some crackers or toast, but she refused. I did get her to take a couple bites of her applesauce to get her medicine down. We laid down together until she fell asleep. She was pretty lovable and said some pretty funny Sophie things while we laid there.


Marc headed over to the Ronald McDonald house with Sarah, since we gave up on Sophie sleeping with Marc after last night's failed attempt. (Just as I walked out the door at 10:00, she started crying for me.) We're hoping that this will give Grandma and Grandpa a night to sleep, and Marc really wants to help with the kids, and Sarah certainly loves her Daddy. Pray that they might get a restful night's sleep and Sarah will adjust to her 2nd new sleeping environment in one week.

Sophie is sleeping now, and I'm planning to have another picnic with her around 2:00am because tomorrow is yet another day of no eating. We have a very full schedule. Eye appointment, PT and OT appointments, clinic appointments, and her first radiation. Please pray that all goes well, and beg for that miracle.

Wasted Day

Today seemed like a waste. We went to the hospital at 8:00am for the PET scan as scheduled. A nurse came in to administer Sophie's steroid and prevacid by IV so that she could take them without food; we had been putting them in applesauce up to this point. The PET scan required an empty stomach for 8 hours with the exception of sugar free clear liquids up to 2 hours prior to the exam. As the IV drip was finishing around 9:00, the radiation/sedation nurse came in and told us that we would not be able to do the sedation for the PET Scan because the medicine in the IV was being given with sugar water instead of plain saline! UGH! We were sent home with nothing else scheduled for the rest of the day. Sophie was the only happy one - we made a stop in the cafeteria so she could eat, and she seemed content, and consequently so was I because she stopped whining, "I'm hungry" for the first time since 4:00am!

This mishap was the second time we had experienced a miscommunication among the St. Jude staff. The first was on Friday and involved the same "empty stomach" misunderstanding. We told the doctor that we were concerned that this would delay her starting the radiation treatment, but he reassured us that she will still start on Wednesday as planned and we'll just fit the PET scan in when we can.

The up side to having the day free was getting to spend time with baby Sarah who is growing up before our eyes. We've been so lucky to have family here caring for her and waking up with her (yes, she is still getting up at night too). She is quite the little beast and trying her darndest to get on her knees to crawl. She will be 8 months on Wednesday; it amazes me how fast time goes. Scary considering how precious time is for us these days.

Sophie enjoys seeing her sister too, and we enjoy seeing them together. Sophie's day seemed uneventful until later in the day. We had decided to leave the IV needle in her port so that she wouldn't have to be poked tomorrow morning when they sedate her (once again) for the radiation films. These films are needed to confirm the radiation locations on her head. This was the first time we had left the needle in, and because Sophie's is under her breast in a spot that is hard to protect, she experienced some bleeding through her shirt. It was minimal, but we were a little nervous so we took her back up to the hospital to have the bandaged replaced. She was NOT at all happy about that. Around 6:30pm we noticed some more blood, but after talking with the nurse on the phone, we were told that a small amount is normal, as long as there is not blood in the tubing, or gushing around the needle, we shouldn't worry!

Sophie threw up a small amount of watermelon tonight, and seemed extra fatigued. I'm getting worried about her right hand/arm. Her thumb seems permanently bent, and we've been trying to work with her in an effort to prevent her from losing all range of motion. Her moods were up and down all day. She had a major fit this afternoon complete with yelling, swinging, kicking, and throwing pretzels and blankets because I told her I had to stop rubbing her back for a few minutes due to the tingling in my own arm after having rubbed her for 45 minutes. She finally settled down, but throughout the tantrum I asked myself over and over again, "who is this child?" I definitely can't wait until we can begin to wean her off the steroids.

Well Marc has convinced me to go back to the hotel tonight and leave him here with Sophie. I am a little nervous that she will wake up and want me, but Marc wants a turn to help and I would like a chance to sleep - I'm hoping I will be able to.

We will try to post again tomorrow after the radiation films. Those are not until 1:00, so right now, pray that we may distract her from her hunger pains. Right now the plan is to wake her around 3:00am (she'll probably be up anyway!) and give her something to eat.

We are still trying to take one day at a time, and surround ourselves with positive thoughts which has been hard to do. We keep finding ourselves reading websites of children with the same diagnosis as Sophie, and so many end in the same way - around 12 months after diagnosis. Please pray for all these children and their families who are battling this same "monster" and also for the doctors and researchers so that a cure may be found.

God Bless, and thank you for the prayers. Please keep them coming.

First Weekend

Well, our first weekend here at St. Jude has come to an end. It was a change of pace not to have to visit the hospital, but at the same time, just sitting around makes us anxious because we fell like we are not getting anything accomplished as far as treatment goes.

We spent the weekend at the apartment that my parents are renting (just 2 miles from our hotel) and Sophie really seemed to like being in a different environment. Her physical symptoms are unchanged, but her moods have been a little better.

Saturday Sophie agreed to stay with Grandpa so that I could go to Target with Grandma to get some things we had forgotten. I realized I didn’t have my purse, so we made a brief stop at the hotel to get it. Upon entering, the kind lady at the front desk asked me to confirm my last name. I had two surprises waiting. One was a nice bouquet of balloons with a teddy bear for Sophie (from the Thals – thank you) and then she told me I had “guests” waiting for me in the “family room.” Imagine my surprise when I saw 3 of my very dear CRHP “sisters” from my old church in Cincinnati!!!! These 3 very busy ladies with families of their own had driven 7 or more hours to surprise me with a visit! Not only was I (and my family) blessed with their company, but they also came bearing gifts…many gifts. Rubbermaid totes full that they had put together with the help of my other CRHP sisters and some of the ladies from our old subdivision. Tissues, magazines, chocolate, and more chocolate, DVDs, books, stickers, cards, prayer cards, a prayer shawl, note cards, stamps, zucchini bread, markers, coloring books, CDs, disposable cameras, lotion, lip balm, and many more things I know I am forgetting to mention. My Mom and I obviously nixed our Target trip, and we all spent the afternoon together, and shared pizza for dinner. We marveled at the fact that God must have planned for me to forget my purse so that I would actually go back at the hotel to see them (they had no number to reach me, and I did not know they were coming.) It was an awesome moment, and an outpouring of generosity, kindness, love and SUPPORT! Thank you IHM – Cincinnati community. I’ve seen the work of that church before, but never on my behalf. I am overwhelmed and shocked by the level of spiritual support that this faith community has provided.

Sophie is still clingy, but she has her moments of reprieve where others can distract her enough to give me a short break. I actually took my first shower ALONE this morning before we went to church. We planned on leaving Sophie here with Grandma and Grandpa, but she said she wanted to come, and of course we weren’t going to deny her a chance to be in God’s house!

We even ventured to Wal-Mart, after a short afternoon nap, Sophie in tow. She said she was tired, but did pretty well. We convinced her to wear a pull up tonight, telling her they were special “sleeping underwear.” Hopefully that will make tonight a night of not having to change the bed sheets.

Tomorrow we will be up early. Sophie has her first appointment at 8:00am, followed by yet another sedation for the PET scan, which was postponed, from last week. I hope tomorrow morning will not be too bad because she won’t be able to eat again, and she has been eating up a storm. We are trying to monitor what she eats, but it is difficult to tell her no. We are hoping that the radiation will begin Wednesday at the latest.

Thanks again for the continued prayers and support. Keep them coming. We certainly do need them.

Website bugs worked out...

Ed and Kevin have worked out all the bugs for us, so the paypal link is now up and running for those of you who have continued to ask how you can help. We really appreciate everything.

In addition, Emily and Marc will just be using this site for updates so please check back here to keep up with Sophie's care and post your messages of support.

Sarah

K of C Dinner Fundraiser for Sophie

Elizabeth Gedeon made this flyer for the fundraiser and I know it's hard to see, so here is the pertinent information:

March 31, 2007
5pm-10pm

Knights of Columbus Hall
1783 Moore Rd
Avon, Ohio

Tickets are $15 for adults and $5 for children under 12.

There will also be a Chinese-style raffle to raise additional funds.

For advanced ticket information or to donate items for the raffle, please contact Scott Gedeon at gedeon4@oh.rr.com

All checks should be made payable to Smiles for Sophie

In addition, you can "right click" on the actual flyer above and save it to your computer. This will allow you to view it "larger" and/or print the flyer out to post wherever you choose.

Thanks for the support!!

Sarah

Family's together!!

We talked with Dr. Gajjar about the clinical study and signed all the necessary consent forms. There was only one study that he thought was a good fit. We talked about the others that I had read about on line, and he was willing to make any phone calls necessary to try anything. Some would have required us to leave St. Jude’s, so we decided to go with the one study that we were eligible for here. He reiterated over and over again, that it IS just a study. It is in Phase II, and they have the dosing right, but haven’t seen an overwhelming response to the patients in Phase I. We’re giving it a shot anyway, and hoping and praying that with the radiation, we will be granted a miracle.

Today Sophie was sedated again for 2 hours so they could do what was called the radiation simulation. Today was the first time she was pretty cooperative for the access to her port. She realized that even though it looks scary, the numbing cream really does work, so it’s not painful. We’ve had the hospital staff remove the needle each time it’s been used so far because we want her to be able to take a bath (especially after those frequent bedwettings which we are still dealing with). The simulation required yet another CT scan and MRI, and a casting/mold of her face. They took measurements and marked the spot(s) were the radiation will be concentrated. The mold will be used to fit her with a mask that she’ll wear during each treatment. Once radiation begins, the actual treatment will take about 20 minutes a day for 6 or so weeks, but because she will need to be sedated, it will be about an hour and a half procedure each day.

Sophie has been taking most of the appointments in stride. We have been honest with her regarding the schedule for the day, and she is much more cooperative when it’s just a consult, and we can tell her that we’re just going “to talk” to the doctor and there will be “no pokes.” Believe me, when we tell her that there will be pokes, she is pretty resistant, and asks, “Can we please just go to the cafeteria?”

We look forward to a week end without appointments, and are glad that our family has arrived. It is a tremendous support to have them here, and of course we were very excited to see Baby Sarah again. We are holding on; some days it is harder than others to remain hopeful, and we find our thoughts wandering. But then it must be the power of your prayers which gives us a glimmer of hope and a continued focus. Thanks again for your thoughts and prayers. Sophie is our little angel and we believe your prayers will deliver a miracle.

Ice Cube...

The steroids are as bad as what people have told us. She has gained four pounds since last week which is a lot for a three year old kid. She also is having significant mood swings. One moment she will be completely fine, the next she is totally out of control. She wakes at night at least every hour, sometimes having to go to the bathroom, sometimes wetting the bed, other times trembling and calling out. Until today, she has taken 4 mg per day, but will now begin taking 8 mg per day, which she will gradually be weaned off of during the course of the radiation. While the steroids have no effect on the actual tumor, they are supposed to reduce the swelling and minimize some of the symptoms. As for her symptoms, she is not using her right hand or arm much at all. It just kind of hangs there. Today I asked her to grab some ketchup packets, and she was hardly able to hold onto one. She walks with an obvious limp and the facial muscle and eye weakness are noticeable. And as far as the mood swings go, she is even clingier than ever. She is literally attached to me all day, and has even spent the last few mornings sitting on a towel on the bathroom floor while I shower. Lately she doesn’t want to ride in the wagon back and forth to the hospital, and insists I carry her...it’s only a 5 minute walk, but carrying a 40 pound load on my front is not easy. Pray that I may have the strength and patience to continue to give all this nonstop attention that she requires, without completely depleting all my own energy.

Dr Gajjar reviewed Sophie’s MRI with us on Thursday. The tumor appears to have grown very little since last week, so that is a bit of good news. We showed Sophie the pictures, and tried to explain it and why she is here. Ed said he used the analogy that the tumor is an ice cube and the doctors are going to try and melt the ice cube. It made perfect sense to me so we used the same analogy. We showed Sophie the scan of her head and pointed out the large oval shaped mass and said it was like an ice cube and that the ice cube was making her throw up and walk “wobbly.” We went on to say that the doctors at St. Jude are going to try and melt the ice cube. She didn’t say much...actually she didn’t say anything. But later that night while drifting off to sleep, she rolled over and said “We have to show Aunt Sarah those pictures, she is not going to believe that I have an ice cube in my head! The simple honesty of a child is what saddens me most about this situation. Poor Sophie can’t even begin to comprehend the severity of the cancer. Maybe that is a good thing...

Thanks for the continued prayers for Sophie

This is the second time that wireless internet has zapped my update before I posted it. This time I am going to write in word so that nothing is lost. I began this post on Wednesday afternoon, and now it is Friday evening and I am just finishing it!!! We are so busy here, and with the constant care and attention Sophie requires, finding a time when I feel like doing something other than trying to catch a few hours of sleep is rare.

This will be my last post on the Care Pages website. Future posts (assuming that I can maintain an internet connection) will be on Sophie’s new website:

www.smilesforsophie.com

The website will be easier to access and will allow us to provide relevant information and links regarding Sophie’s brainstem glioma. Your prayers and comments mean the world to us. It is so uplifting to get back to our room after a long and often depressing day at the hospital and read your thoughts and prayers. Keep them coming and don’t hesitate to share Sophie’s site with others. We are overwhelmed at the number of people from all across the country who are praying for our little girl.

We also would like to thank those of you who are sending cards and gifts. Sophie has enjoyed receiving things at the hospital and we are ever so grateful for the kind words. I would like to think that we will send thank you cards sometime soon, but probably not in the very near future. I also would like to say that I am not able to access my email remotely...just can’t get it to work, so if you have been emailing me, that is why I have not been responding. And although I appreciate the phone calls, I haven’t been too good about returning them, simply because I have a hard time finding the time. I do however appreciate those of you who are thinking of me (us).

Sophie is taking a little nap which affords me the time to update. Wednesday was the first day she slept during the day. We think she must be exhausted since she doesn’t sleep well at night and has been getting up rather early...like 4:00am on Wednesday! Wednesday she had an MRI at 7:45am. We had to be at the hospital by 6:30am in order to prep for the sedation, so I guess it wasn’t that bad that Sophie was up so early except for the fact that she really wanted to eat and drink and couldn’t after midnight.

I hate that Sophie will have to be sedated every day for the next 6 weeks (once radiation begins). First, she can’t eat 8 hours prior to radiation, and for a kid on steroids, that is torture. Second, she is so helpless when she comes out of sedation. It really is sad.