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.