New Hope?

Once again, this update is coming much later than we had hoped. My intention was to update when we returned from our Disney Cruise, but then we received the heartbreaking news abut Maria, and it was too hard to update. Then I thought I would have the strength to update on July 21 - our five month mark since diagnosis, but then we were consumed with researching a new protocol and time slipped away. Now here we are on July 30 and we're just sitting down to gather our thoughts and update our loving supporters on what has happened in the last few weeks.

Yes...it has been a while since we last updated. Yes...we have been busy, but that is no excuse. One reason we have not been updating as frequently is because it’s harder and harder to stay positive. We approached this challenge with hope and optimism. However, watching Sophie’s condition gradually deteriorate has a way of stealing the little bit of hope that helps us get through each day.

Sophie now requires a wheelchair to get around. With handholding and a whole lot of prompting, she can still walk from the couch to the bathroom, but not much further. The weakness on her right side is more significant. She is unable to use her right hand and has very little use of her right leg. Her headaches are more frequent and she continues to vomit every other day or so. Her left eye is now crossed, she’s been drooling, and her weight is up to 54 lbs. As if this was not enough, we noticed that her speech had become more slurred and she was having more difficulty chewing and swallowing during the last week or so. Her appetite remains more-than-good, so we have been cutting her food into smaller pieces and encouraging her to take small bites and to slow down.

We have to assume that the tumor is progressing. Our last MRI did show new tumor enhancement, but because we were only 10 weeks post radiation, the oncologist stopped short of saying that the tumor is progressing. He did say that there was still a chance that the symptoms were due to radiation swelling and that we could still see an improvement. That was 4 weeks ago.

Given Sophie’s situation and the unacceptable prognosis given by conventional medicine, we have decided to pursue an alternative treatment. We are now in Tulsa, OK where Sophie will receive 36 consecutive intravenous treatments. We have been staying at a not-so-nice Day’s Inn, but will move into an apartment today.

The decision to pick up and leave was made quickly. My aunt Diane had done a lot of research about alternative cancer treatments and attended a conference in Florida 2 weeks ago. She found the only clinic in the U.S. that would administer this alternative treatment on Monday and after a 12 hour day of travel, we were in Tulsa by Thursday. Sophie has completed 4 treatments with her first treatment given Friday morning. She is tolerating the treatments well. The side effects are minimal, and more importantly, non-toxic. The lady that runs the clinic has done so legally for the last three years and claims to have successfully treated hundreds of cancer patients. She has treated 8 patients with glioblastoma eradicating the tumors in all but 1 patient. While a glioblastoma is different than a pontine glioma, they are both gliomas.

I was more than a little skeptical when I walked into the clinic Friday morning. It was nothing like St. Jude. But as I listened to the clinic’s director and talked with some of the other patients, I realized that maybe there is still hope. Maybe when we go back to St. Jude on September 4th for Sophie’s 4th MRI the tumor will be gone. Maybe we’ll wake up from a 6 month nap and this nightmare will be over. Or, maybe this is a fleeting hope and soon we’ll all come back to reality. Either way it’s hope. And hope is what helps us get through each difficult day.

We have managed to have some fun as a family since our last post. We went on a Disney Cruise a couple of weeks ago thanks to the Make-A-Wish organization. What an outstanding organization. Sophie had a great time. She loved getting her pictures taken with the characters, especially Minnie Mouse. She insisted on giving Minnie and the other characters gifts every time she got her picture taken with them. So each day we would visit the Disney Store on the boat so Sophie could by the gifts. By the end of the cruise, the characters were so touched by Sophie’s generosity, they wrote her personalized thank-you notes. It was a great trip and for a few days we escaped the reality of our situation. Sophie has been talking a lot about her next Disney Cruise, and she is already looking forward to Halloween and Christmas. We are anxious to make these days a reality for her.

I want to say thanks to my dad and brother for organizing the golf tournament in Michigan. I think it was much bigger than either expected, but they did a terrific job pulling it off. I also heard that the bowling event in North Olmsted was a huge success. Thanks to Niki Haag for all your hard work and generosity. The support we have received and continue to receive from friends, family, the community, and even complete strangers has been incredible. Again we say thanks.

As most of you know, little Maria McNamara lost her battle with this horrible disease on July 14, 2007. On July 18 we attended the funeral services, and reflected on the fact that exactly 10 years ago we were preparing for our wedding rehearsal. Who could have predicted our situation and the people we would meet because of it; this tumor is vicious, and has a way of taking the wind right out of your sails. Maria was a brave and beautiful little girl whose legacy will continue to grow through the Prayers From Maria foundation. The foundation was created to help families find cures. Maria and her family helped us more than they will ever know, certainly more than can be articulated in a blog. You can visit Maria’s foundation at www.prayersfrommaria.org

Your support and prayers mean a lot and help us through each day. Pray that we made the right decision in coming to Tulsa and that Sophie responds well to the treatment. Keep the faith, and help us continue to pray for Sophie's miracle.

July 2 MRI Results

We arrived back from our family vacation in Florida followed by a quick one day stop in Memphis for a routine MRI. I wish I could say that the results were good, but that would mean the tumor is gone, and devastatingly, it is still there. The doctor told us that the 3 areas of necrosis that were seen in her May MRI are still present and "angry". He was surprised that they haven't "settled down" yet. In addition, one more area of "enhancement" appears within the tumor. (On an MRI, areas of enhancement are white due to the contrast dye that is used.) We were informed that this can mean one of two things, 1- the tumor is showing new growth, or 2- a new area of necrosis is developing. Of course we hope for #2, but even if that is the case, we need the necrosis to go away so that her symptoms will improve. As far as the size of the tumor, it appears a little larger, but again may be due to the bulging areas of necrosis within the tumor.

She had a few vomiting episodes before our trip to Florida and while we we there, she was throwing up every other day. Some days she says that her head hurts too, but other times she just vomits. She continues to struggle walking; due to the tumor, her weight gain, and her balance. Her right arm and hand are bent and tight to her chest. Her best times are in the morning, which are sometimes as early as 4:00 am, but then she tires out by mid morning. Her energy has been low, and most of the time in Florida, she wanted to do "fun things" but once we did, she was tired and wanted to rest. We do continue to swim, which she enjoys. We just can't believe the difference in her in the pool this year, as compared to years past.

The MRI also showed a new area of swelling, which is responsible for the pressure related symptoms of headaches and vomiting. We were advised to bump her decadron (steroid) back up to 1.5mg a day. This was particularly disheartening, because our goal has always been to get her off the steroid so that she may be a little more like her old self. We were told that her symptoms should improve with the increase in steroid...she has had less headaches, her energy has been better, and so has her appetite. When she has a headache, she asks for an "applesauce bite" to make her better. We were also told that if the tumor is growing, her symptoms will appear and worsen pretty quickly.

Her brace and new thumb split are in, unfortunately Sophie is not the least fond of them. We are supposed to be working up to wearing both during all waking hours, but because of the struggle, we have been doing an hour here and an hour there. It is amazing how much better her limp is when she wears the brace, but because it feels funny to her, she doesn't like it.

Sophie celebrated her 4th birthday first in Florida with a "combo" themed party thrown by Grandma, Grandpa, Aunt Sarah, Uncle Matt and Uncle Charly. They went all out and decorated the condo to the hilt! We had all the necessary supplies, complete with pinata, birthday hats, and blowers. We all had noodles with sauce and grapes and carrots for dinner because that is what Sophie wanted, and then since Sophie wanted a "Pooh" cake, we had that for dessert. Maybe Aunt Sarah can post a picture!

The birthday finale was on Wednesday the 4th with a party attended by many of the people who are special to Sophie. She had fun, and says she can't wait until she turns five! We ended up doing another Dora themed party, and we had the decorations to prove it. Very gaudy...just as any 4 year old (or kid birthday) party should be! I would include some pictures, but I haven't downloaded any because I haven't had my USB cord since our days in Memphis. I promise to get that all straightened out soon!

A super HUGE thank you to my good friend Andrea Segedi who pulled off the Carrabbas fundraiser, which I am told was a great success met with wonderful people and great food. I could begin to include all others who I know helped, but I would hate to leave someone out. Again, we want to say how humbled and grateful we are for the constant love, prayers and support from so many of you.

We are headed to Florida once again this Sunday for Sophie's Make-a Wish trip. The 3 of us are going on a 4 day, 3 night Disney cruise to the Bahamas and Disney's own island. We are all excited; even Sophie and we hope that our travels now will be easier since we have a wheelchair for transport. I never thought I would be happy to have my child in a wheelchair, but it is getting increasingly difficult to lift and carry Sophie. Her weight gain to date is 15 pounds since diagnosis just over four months ago.

There are so many more small details I could include, but finding the time to update has been increasingly difficult. Even though Sophie's symptoms are evident, when I lay down with her at night and we talk about the day, it is easy for me to forget our situation, if only for a minute. Her wit and charm make me smile in the darkness when my eyes cannot see the effects of the tumor. I am so grateful for our time together and enjoy laying awake with her even though I know her usual midnight, 2am and 4 am wakings will be here as soon as I close my eyes! I hope you understand our updating delays, but because we know there are many of you that care, we will try to be more diligent.

Sophie rarely complains about her situation, and doesn't ask us why this is happening to her. I guess that because our memories of being 3 aren't that clear, she doesn't really remember what she used to be like. I like to think of her as a brave little soul. Many of you have read the following passage before, but I came across it again the other night, and thought it was worth sharing.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

One last thing...about a month ago, we received Sophie's "Song of Love" and I have been meaning to put the directions on here so you can check it out if you are interested. Go to www.songsoflove.org and click on the Family and Friends download link. Type in the last name Quayle and then use 11681 for the record number. You must make a minimum donation of 99 cents to hear the song. It certainly makes us smile when we listen to the words and relive memories of our old Sophie. Hopefully you will find the cause worthy and make the donation to hear it.

We ask for your continued prayers for Sophie's miracle and for all the other children and families living this nightmare. We thank you for your love and support, and promise to update once we return from our trip. God bless.

Really overdue!

We're back in Avon Lake after visiting Aunt Sarah and Uncle Matt in Florida. It was quite an ordeal; from our Sunday night flight out being cancelled (after my Dad and I were in the airport with Sarah and Sophie for 4 hours and then we were re booked on the 6:30 am flight Monday morning) to Sarah sneezing on the plane and consequently getting all of us sick while we were there, to Sarah catching a staph infection on her skin (most likely from the water in Florida), to Marc deciding to head back to Avon Lake with Sarah on Sunday instead of Tuesday with us so that he could get her to the doctor!!!! Never-the-less we still had fun, and Sophie got to spend some time at the beach and enjoying the Florida sun because the weather was perfect!!!!

We are hoping our trip back to Aunt Sarah's at the end of June (after her baby is born) will be a little less eventful.

While in Florida we began the decrease in Sophie's steroid dose. By the time we came back, she was down to 2 mg a day, but her appetite was still insatiable. I took her for her bi weekly appointment with the oncologist and neurologist here at RBC on Wednesday and both thought that from a neurological standpoint she looked better. Her weight was 48 pounds, which is obviously very concerning. Her blood pressure was high, (as it has been during the use of the decadron) and at times she seems to be breathing heavy. The doctor told me that this is due to the increased weight, and compared it to being at the end of pregnancy after gaining the average 30 something pounds, because percentage wise, Sophie's weight has increased by 30% which is comparable to an average pregnancy weight gain. I know how I felt at the end of my pregnancies, so now I am able to better understand why Sophie doesn't want to walk, why she is content just sitting and doing activities at the table, or watching TV. It breaks my heart because I know she needs the exercise but I understand how difficult it is for her to stand up, bend over, etc. because of her muscle weakness due to the tumor, but now also because of the tremendous amount of weight she has gained.

On Wednesday were given the okay to reduce the steroid further to 1.5 a day for a week (if she tolerates it) and then to 1. She hasn't had any headaches or vomiting, but she has been more tired. We are hoping this is a side effect from "coming down" off the steroid, and not an indication that she needs to go back up to 2. We still haven't seen a real decrease in her appetite, but we are hoping to, so that she may be able to enjoy the nice warm weather we have been having.

She finished up her 3 week cycle of her chemo, and she has a week off before she starts another 3 week cycle. We will wait to see the results of her July 2 MRI to decide if we can and/or will continue with the Zarnestra trial.

We have established a "sleeping schedule" so that I can count on a few good nights of sleep (if Sarah doesn't wake up) and also so that Marc can share in the bonding experience that I have when I lay down with Sophie at night. Grandpa even has a day - Wednesday, and even though if Sophie had the choice, she would choose to sleep with me, she has been receptive to the schedule. It's strange, now when it's my turn for a break, I have a hard time falling asleep without her!

Sophie had her first PT appointment here at the house. It was a good workout for her, and she fought back tears at some points. It's so hard for me to force her to keep going when I see the pain and anxiety in her eyes, but she did it, and hopefully she'll do better next week now that it is not so new. The therapist is bringing a colleague with her who will make a cast of Sophie's leg (she doesn't know this yet, and I am nervous to tell her) so that she can have a brace make to help her with her stiff-legged walk. The PT mentioned this to me during her initial consult, and so I asked Sophie's neurologist her opinion on Wednesday and she thought it was a good idea, so she wrote the prescription. We're hoping that this will allow Sophie's leg to become used to walking in the correct posisiton as she continues with the therapy in order to strengthen the muscles. I know she is NOT going to want to wear it at all. We battled with the glove that she was to wear at night, and I know this will be a battle as well. Insurance will pay for 6 in home PT visits, and then we can request more if we can prove that Sophie needs it and/or that she is making progress.

Now it's almost been a week since I started this post, and I'm finally finding time to finish it now that I am back in Florida with Sarah and Matt because little Zachary decided to come 3 weeks early! Everyone is sleeping, so I have some computer time.


Sophie continues to be the same symptom wise. She hasn't had headaches or vomiting, but remains the same in terms of her limp, right side weakness, and difficulty smiling on command. She can smile when she is laughing, or happy; the neurologist informed me that we use different muscles to smile on command than we do when we are laughing, so that explains that. Her appetite is slowing a little, and I mean a little. She is still quite lazy, for lack of a better word, and getting her out of the house to do anything can be hard - unless of course it involves going to a restaurant! Recently I told her that she has to take 2 walks around the cul-de-sac per day. She has been complying, but not without complaint.

We are still giving her 1.5 mg of decadron daily. We planned to reduce it to 1/day on Thursday, but thought it might be best to wait until I am back home on Monday.

A huge thank you to the IHM community in Cincinnati for the walk-a-thon fundraiser last Saturday. We continue to be humbled, and overwhelmed by the love and support from people both near and far. My parents drove down Saturday morning and had only wonderful things to say about the people and how organized everything was. I know Lisa Nicholson was the brain behind it all, and if I tried to thank others, I would inevitably forget someone, so a general thank you to everyone in Cincinnati, especially the IHM parishioners and my wonderful CRHP sisters who I miss so much. I love you guys.

We have been plugging along. Some days are better than others, but there are times when I find myself really missing the old Sophie. The innocent little girl with the smile, who wanted to spend time outside and go places with me. It's times when we do things that we used to do, when I realize how different she really is, and mostly I feel angry that she has to go through all this. I wish all she had to worry about was what we were going to play next, but instead she worries about how many "appointments" she has, who is coming to the house, how many bites of applesauce she has to take today, and how many more days she has until she has to get her blood drawn again.

Her fourth birthday is coming up on July 4th. We were talking about what kind of party she would like to have. At first she was set on Winnie the Pooh, then it was Backyardiagns, and now we are back to Dora (which she had last year). When I told her that she couldn't have the same theme two years in a row, she told me, "It's okay Mommy, I'll have Dora this year, Winnie the Pooh next year, and then Backyardigans the next time." My prayer is that she'll be around for many more birthdays, and that her only worry is what theme we should have for the party. I know the statistics aren't in my favor, so we keep the faith and keep praying for her miracle, and we ask that you do the same.

Thank you for your thoughts and prayers.

Fundraiser Updates

Hi to everyone!

Well, I just dropped Emily and Sophie off at the airport to head back home to Avon Lake, and it just seems way too quiet around here now! I sure will miss them and am glad they were able to come - we had a great visit (minus the colds we managed to pass around to each other)!!

I know it's been awhile since any new posts and I am sure it may take Emily a few days to get back into the swing of things at home, but I did just want to get some information out on the upcoming fundraisers.

First, tickets are still available for the Carrabba's luncheon on June 16th. If you are planning on attending, please contact either Andrea Segedi, Patti Bozoian, or Joe Szejda for tickets (their phone numbers are on the flyer in the "Events" section on the right hand side of the page). Remember that seating will be done in 30-minute increments, so if you were planning on going with a group of people, please don't wait until the last minute to get your tickets.

Also, Sara Czarnecki, a member of the Paula Czarniecki Memorial Fund, contacted me about a fundraiser they have put together for Smiles for Sophie as well. It is a Spaghetti Dinner on June 8th, from 5-9pm at the Peace Evangelical Lutheran Church in Southgate, MI. Below is the flyer for this event.

In addition, Bob and Brett Quayle (Marc's dad and brother) have organized a Golf Scramble in Grand Blanc, MI on July 16th. This event is slighly different in that proceeds will go directly to St Jude's in order to further research in the area of pediatric brainstem tumors. The flyer for this event will be posted soon in the "Events" section.

And, the Walk-a-thon in Cincinnati, OH is coming up this weekend (see the flyer in the "Events" section). Lisa Nicholson and her crew have been working very hard to put this event together and it sounds like it will be a great one. There will be a band, many items for raffle, children's games, and of course lots of great food to go along with the walk.

Finally, we will soon be posting a link to an online store for Smiles for Sophie T-shirts and bracelets. Some of you may have already seen the T-shirts and bracelets at the Euchre Tournament Fundrasier in Trenton, MI, and with all the interest, we decided to make them available for purchase on the website. Again, this link should be coming very soon so stay tuned for more information.

Thanks to everyone for their continued efforts and extreme generosity with all the fundraising events. The outpouring of support is still so overwhelming and we truly appreciate it.

Please continue to pray for Sophie's miracle!!

Love,

Sarah

Long overdue...

I realize it's been a while since I last updated. Being home has kept us all busy. Taking care of the girls is a full time job, and when you add appointments and laundry, thank you notes, and trying to keep things under control, few spare moments remain in the day. Each night when I lay down with Sophie, I plan on getting back up as soon as she falls asleep so I can update, but usually, I don't wake up until Sophie is telling me she has to go potty, and by then it's at least 11:00, and I'm content just sleeping!

Aunt Leslie and Uncle Jacob were so generous in paying to have our house deep cleaned. It needed it, and we are so grateful. They also arranged to pay to have our house cleaned 2 more times over the next month or so. Thank you guys!

About two weeks ago, Sophie was having some bad headaches and neck aches and was throwing up again in the mornings. Walking was difficult and she seemed a little off balance. She was not much in the mood for eating, so we were concerned. We contacted Dr. Gajjar in Memphis and he recommended bumping her steroid dose up from 1 mg a day to 2mg 3 TIMES a day in order to get the swelling under control. (He still feels fairly sure that the swelling is from the radiation.) We thought 6mg a day was too drastic of an increase so we opted for 4 mg a day in an effort to control the pain and throwing up with as little side effects as possible.

Sophie's symptoms responded well to the increase, but unfortunately so did her appetite. She is back to wanting to eat non stop and when I took her to the local oncologist on Wednesday, she weighed 45 pounds. When she was diagnosed, she weighed 36. Her doctors said she looked better than she did two weeks ago, and that she was showing improved muscle strength.

We gave her the 4mg a day for 8 days, and as of Thursday, decreased the dose to 3mg a day. Her personality and mood do not seem to be affected by the increase in steroids. We have seen many smiles and heard a lot of laughter lately. (And her smile is improving too.) She did seem more tired today than she has in the past week; we are keeping a close watch on her. Hopefully she is just tired from the long walk and picnic Aunt Leslie took her on Friday!

We started back up on the chemo about 12 days ago. We didn't realize that this course would be an increase from 175 mg daily to 300 mg daily. She is tolerating it well; the only side effect she complains about it being "itchy". We are continuing to give her as much of the herbal and alternative remedies that we can get her to take.

We finally had the visit from the in-home PT who did an evaluation. I was happy that Sophie was a lot more successful with many of the "tests" than she was in Memphis. We're hoping that we can continue to strengthen her muscles through the PT and OT so as the radiation continues to work, her right side weakness will improve.

She also had her bi weekly blood draw and port flush here at home by the home health care nurse. I thought that maybe being at home would make the experience better for her, but I was wrong and quickly taken back to the Monday mornings of "port access" while at St. Jude. She was a tiny bit comforted knowing that we won't have to do this again for 2 more weeks. She still HATES it.

Tomorrow we are going to Florida to visit with Aunt Sarah and Uncle Matt. Grandpa is making the flight down with me and the girls, and Marc will be joining us on Thursday for the holiday week end. We are looking forward to being in the sunshine, and hope that the warm weather will distract Sophie from the feeling of constantly being hungry.

Thursday Megan McNamara and I were treated to a 60 minute facial, compliments of "A Time to Spa" in Olmsted Falls. We are so grateful for the wonderful gift of relaxation. We both felt guilty escaping the reality of life, if just for an hour, but are so glad we did. The spa was wonderful, and so generous. If you live in the area, and are looking for some pampering, check them out, at atimetospa.com This morning, we were able to take Maria and Sophie for complimentary mini manicures, and then out to breakfast. We enjoyed our girls morning out, and again want to thank Lisa and her staff, for their kindness.

We continue to ask for your prayers for Sophie's miracle and also for prayers for all the other kids and families fighting this battle. We have good days and bad days, but the battle definitely doesn't get easier. It's the fear of the unknown that can quickly make you shake your head after smiling in admiration when Sophie says something so cute and "Sophie-like". Just wondering how much longer I will be able to hear her say those things is enough to make my heart sink, when all I really wish I could do is enjoy her. We take each day moment by moment, because we know that when we allow ourselves to worry about the future that the feeling of helplessness sets in. We continue to ask for God's grace to help us through, as we place our trust in Him.

I hear Sophie calling me, so I'll close for now. I will try to post more often, as I know many of you anxiously await for updates. We thank you for your prayers and kind words.

Attention Runners and Walkers in the Downriver Area!!!

June 15th, 2007 is the annual Zanglin Downriver Run through Elizabeth Park in Trenton, MI. Every year, the proceeds from the run are donated to charitable organizations and this year, Smiles for Sophie will benefit from the generosity of Jim Zanglin and all the participants of this year’s event.

So, if you’re interested in running or walking this year to help raise funds for charity, please check out the Zanglin Downriver Run website at http://www.zanglinrun.com/. There is both a 1 mile fun run that starts at 7:30 pm and an 8K road race that starts at 8:00 pm, followed by a street party. The event is open to runners and walkers of all ages. The website has all the pertinent information as well as links to registration information.

Thanks to Libby Shumate and Sandi Polgar, another of my mom’s Lenox neighbors, for their work in this fundraising event. Also, many thanks to Jim Zanglin and the Zanglin Downriver Run for choosing to help support Sophie and her family with this year’s event.

Sarah

First MRI results...

Thank you to all of you who continue to pray for us.

We've had a few very busy days, and after several attempts to post, I am finally getting around to finishing. Before we went to St. Jude on Wednesday, we had a visit from a few members of the hospice team that handles this region. Obvioulsy hospice seems very premature, but these are the people who will be coming to the house every 2 weeks for blood draws and port flushes, and we were surprised to find out about many more services that they offer for our entire family for every stage of this "disease." We then went to an appointment with the oncologist here in town. We were supposed to have seen him last week, but couldn't get in until this past Wednesday. The point of our visit was to make contact with him so that we would have a local person to speak with in the event that Sophie needed care that couldn't wait for a trip to Memphis. Dr. Jacobson was Sophie's doctor here at the hospital in Cleveland when she was first diagnosed, so he had seen and treated her before. We explained to him what treatment we had completed in the past months and the symptoms we have been seeing recently, as well as the concerns we had about how she was (or was not) responding to radiation. He suggested that we increase the steroid dose to see if the symptoms would improve, and to call him for a follow up in 2 weeks after we returned from St. Jude. He was very kind and reiterated the fact that early post radiation MRIs are hard to interpret.

We left the appointment and went straight to the airport for our flight . When we met with Dr. Gajjar before the MRI and explained Sophie's latest symptoms, including neck pain, and that she threw up pretty strongly (if that makes sense) the morning we left (so much so that I didn't even want to risk her getting on the plane), and that she seems to be showing signs of hearing loss because she continually says "What?" to most things we say to her. He was quite confident that the symptoms were due to swelling caused by "angry" areas of necrosis within the tumor. He told us that in about 35-40% of children with DIPG, they don't show the maximum amount of improvement until 6-8 weeks post radiation. We had never heard that statistic before, and because he seemed so sure, we were a little less anxious during the MRI. He also recommended that we increase Sophie decadron to 1 mg daily and see if her symptoms improve.

We were able to get Sophie in for a quick hearing test before the MRI, and the results were "inconclusive" because of how Sophie's responses were "inconsistent." The test results seemed to show that Sophie has borderline hearing loss in her right ear, and mild hearing loss in her left. Also in her left ear, her tube is blocked, and she has a big piece of wax deep in her ear canal. GREAT.

The results of the MRI showed a .2 cm increase in the size of the tumor. Dr. Gajjar reemphasized the fact that this is most likely due to swelling, and not tumor growth. He said that the doctors seldom categorize a tumor as "progressive" until 4-6 months post radiation. A little reassuring I guess. He also said that the areas of necrosis looked bigger, and angrier. Good, and bad. Good because it means the tumor is dying; either because it is so embedded that it isn't receiving enough blood, or because Sophie is getting her miracle. The bad thing is, is that bleeding from necrosis can be dangerous.

So now we are home and Sophie seems the same. Really tired and amazingly grumpy from just the small increase in steroid. We took her to see a naturopathic (not even sure how to spell it) doctor today and we were told that Sophie seems to be showing high levels of mold in her body. We were given an herb and some other suggestions to try in an effort to improve her overall health so that maybe she can fight this tumor.

I still have faith that Sophie will get her miracle. Yes, my faith waivers a little when I see Sophie walk with that stiff legged walk and right hand and arm curled in. It saddens me to hear her say, "Mommy, you better help me downstairs, or I'll fall for sure." and to watch her try to roll over in bed, and she can't because she can't move her arm and leg the way she wants. Mostly I am sad for her because she has been robbed of so many things. Although she hasn't really complained much during all of this (except when it came to her port) I was so sad when she was gagging and trying to throw up with no contents in her stomach on Wednesday morning, and she turned to me and said, "I don't like to feel this way," and "Why do I have to feel like this?" To me, that isn't fair, and just like most mothers would, I longed to be able to bear this burden for her.

Oh well, hand it over to God, I suppose, because there is nothing else I can do. Right now we are desperately awaiting improvement from the radiation now that we have renewed hope. We will continue with the herbs and enzymes, as well as the energy healing. We are set to start the 3rd course of the chemo trial after being off for 2 weeks, although we just don't know if that is the right thing to do. We have until the fed ex package is delivered tomorrow from St. Jude to decide.

Please continue to pray for Sophie's miracle, and that we will continue to see improvement. I long for her to be able to walk again, and to have her smile back. Sophie is sleeping now and I should be too. I'm going to cuddle up next to my little angel.

Again we thank you for your continued support and prayers, and a special thank you to my Dad who has been a tremendous help with Sophie and Sarah. I can't imagine how we would be coping without his help, and his willingness to do anything and everything. I am so lucky and so blessed, and I know that he wishes he could take this burden from me. I love you Dad, and Marc, Sophie and Sarah love you too.

A Way to Help

Hi everyone,

We are grateful to all of you who have been so generous to us during this battle, and I just wanted to make you aware of a situation so that maybe you could help if you are called to do so.

I'm including a link to a website of a little girl who also has a DIPG. I actually had the chance to meet her and her mother the day before we left St. Jude. Her name is Dasia and despite the tumor and the prognosis she has been given, she is living without symptoms (and has been for over 2 years).

The reason I'm introducing you to her is because her family is going through some very difficult emotional and financial times...in addition to the daily struggles one is faced with when dealing with this medical battle. You can read her journal and find her address so that you can make a donation if you are willing and able.

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=dasiaatkinson

Sophie had a better day. Her smile is not as big...but not because she isn't happy or having fun. We're still dealing with the same symptoms. We are placing our trust in God. My email from the "Purpose Driven Life" website was very profound and inspiring. It reminded me that I need to keep giving this situation over to God. You can read it below.

No matter how bad things get – God is still able to bring good out of it. Today, thank God that nothing – no disaster, no delay – is bigger that his ability to turn it into something good and godly.

· Thank God and let go – Thank God that he is sovereign over your past, your present, and your future.

Give God the circumstances, disasters, hindrances, hurts, and sins from your past.

Give God your current situation, your disasters, hindrances, hurts, and sins of today.

Praise God that he can work anything in your future for godly good, that you can walk in confidence that there is nothing anyone can do to you, or anything you can do that will be beyond the reach of God’s grace and redemption.

· Look for God’s hand – Walking by faith means you see God’s hand even in the most difficult of circumstances. You trust his ability and his willingness to transform the bad into godly good. God is not limited by people’s motives. In other words, it doesn't matter why someone hurt you, God still can transform a deliberate, mean-spirited situation into something for his good.

· What will you allow God to change? – There it is: some situation, or event, or person in your life that, as far as you can tell, was “meant for bad.” How do you think God meant it for good?

Ask God what he wants you to do with this situation (event or person). When he answers, do it. We’re praying for you now.
© 2007 Jon Walker. All rights reserved.

We continue to appreciate your thoughts and prayers. Please keep praying for Sophie's miracle, and really believe and place your trust in God, because miracles DO happen.

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.