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.