about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  make a tribute donation

Click here to go back to the main page.

Monday, June 9, 2008 9:26 AM CDT

Therefore do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes on not what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:16-18

To continue to check on our family please see Mary Kay's Blog Link

It has been so long since I have gone onto Caringbridge put a journal entry on Taylor's site. I have had a few people tell me they can't get on my blog anymore and thought something was wrong with the system. It's just because I haven't been blogging. I was surprised that people still have been on Taylor's site as I haven't been on it in so long. I am so amazed that people still check in and pray for us and think of us and continue to be impacted by Taylor.

We are hanging in there and all trying to find our "new normal" which will never be normal without Taylor. I stopped blogging and journaling as I really just wanted to be anonymous again and fade back into the background of life. I am forever grateful that so many people followed Taylor's journey and supported us through a difficult walk.

As time goes by you go through so many different emotions and try and find your place back in society. You feel a loss of not only your child, but your family circle, your purpose, yourself and place in the world. You feel as though your whole world has been shattered and continue to pick up the pieces one by one.

After a while, the phone stops ringing and I have realized that I not only miss my daughter, I miss all the people who called to ask us "How is Taylor". I miss everyone asking us how we are doing, I miss all the people coming over bringing meals, I miss all the time I spent researching and caring for Taylor, I miss all the drives home from the hospital after treatment, I miss every second of the last three and a half years of our life during Taylor's illness as well as the twelve and a half years of Taylor's life. I miss being Taylor's mom on earth. I miss having identical twins, I miss Taylor's laughter and her smiles. I miss Taylor and Jordan laughing and playing together. I miss chaos, I miss it all.

It has been a hard adjustment to the quietness in my house. Many days after school I don't want to come home, until Jordan gets home because I can't stand the silence. I have had to do some serious soul searching over the past year and have had to really start over in my identity of who I am. I have had to try and become social again, which is so hard for me and scary too. I feel like I'm in this bubble and I can see out of it, watching other people live normally, but I can't break out of the bubble because I don't know how. I want to so bad, but it is so hard to break out. I have to work at it everyday and put one foot in front of the other, whether I feel like it or not. I have to realize my life is not going to ever be the same and I will never feel "normal".

Although I struggle with the path, I continue to seek God through it all. Although I don't understand his plan, I have begun to see things from God's perspective rather than mine. I have realized that nothing on earth compares to heaven. I realize that I will see Taylor again, I realized that I will have pain in this life, but not in heaven. I have been attending Grief Share through a local church for the past 14 weeks and it has really changed me in so many ways. You can go the the GriefShare website to get daily devotionals, books or see where they have Griefshare in your area. Griefshare Link.

I would say the some of the most amazing things I learned is that When you ask "Why" you are in essence validating your own humanness and realizing you are not in control. The biblical view is that waiting is not so much about when I will get what I'm waiting for, but what I will become as I wait. Grief blocks my ability to see God, but I should not conclude that he is absent. I have realized that Grief is not going to be my identity.

The biggest question I was asked from this study, was he/she (Taylor) more important than God? That was the hardest question I think I have been asked to answer for myself. Honestly, I think my whole foundation was based on being Taylor and Jordan's mom and living on the hope that Taylor would be healed on earth. I did not take this position intentionally, it is just something I realized about myself. I also realized that holding onto grief can trick me into thinking that I am keeping the relationship with Taylor alive.

Although I still and will always miss Taylor and have bad days, I do realize that God HAS to be my foundation as nothing on this earth is forever except God. I will always love and cherish my sweet baby girl and miss her more than I can ever explain. I have to hold onto hope in Christ to continue to walk on this earth. I have also learned that you cannot add even 1/8 of a second onto your life, as your time has been predetermined. I cannot tell you how freeing that realization was as no matter how much I did to try and save Taylor, I still blamed myself for her death. Realize you can get through grief, no matter what your loss.

I am still going to school and am taking my finals next week for my second semester in RT school. I have go to school throughout the summer, but will officially be called a "senior" in August. I am so happy I finished my Spring clinical rotations yesterday, but start back up in May for the summer. I am also so happy that I didn't kill anyone in the hospital and am so glad I am only dealing with one end of the body rather than the other! My goal has been to finish college before Jordan graduates from high school so I think I'm going to make it. I had no idea being an RT was going to be so intense, but I'm getting there.

One of the things I did recently was get a tattoo, which is something I said I would never do. A bunch of us “cancer moms” went and got tattoos a month or so ago and I got a purple butterfly with a “T” inside to honor Taylor’s memory. I called Cary to come and watch me after he got off of work, and he ended up getting one too! I posted pictures on my blog of the tattoos so you can go to the blog to see the pics.

Jordan is doing really well in school and has maintained all "A's this year except for one B and is higher level classes. Cary is doing well at work and we all just continue to go one day, sometimes one minute at a time.

Thank you all for still checking on us and praying for our family.

Please remember our beautiful Taylor on Tuesday, April 22nd.

To continue to follow our journey, please go to Mary Kay's Blog Link.

Therefore do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes on not what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:16-18

Sunday, November 11, 2007 11:10 AM CST

To continue to follow our journey, please go to Mary Kay's Blog Link.

Thank you for following Taylor's story and continuing to check on our family.

Therefore do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes on not what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:16-18

Saturday, October 6, 2007 11:46 AM CDT

I have finally created my own web page to Blog on rather than using Caringbridge's site. I feel it is time to move away from Caringbridge entries as I feel it is for families who are dealing with a current illness. To visit my new site, which is much easier to update, add pictures and do alot of other neat things. Please go to Mary Kay's Blog Link It may take a few seconds to load after you get to the site. You can still make comments (only nice one's please) as well. So many times your guest book entries give us inspriration and hope.

Thank you for following Taylor's story and continuing to check on our family.

Love and hugs, Mary Kay, Cary and Jordan

Wednesday, October 3, 2007 7:30 PM CDT

I haven't had any time to update as RT school is getting pretty involved. I just wanted to thank everyone who donated, registered or came out and participated in the First Annual Cure Kids Cancer Walk. I just got the total of the walk and it looks like we raised an amazing $85,000!!! This is unbelieveable for a first year event. It just goes to show what God can do through a small group of people.

The next amazing event is that our friend, Tim Lee, is participating in the Ironman World Championship Triathalon on October 13th in Kona, Hawaii in honor of Taylor. All of his outfits (running, swimming, biking) will have the Pediatric Cancer Foundation logo on them and he is going to have a picture of Taylor on his shirt for the race. He will also wear a visor that reads, "In memory of Taylor Arrington".

This event is nationally televised, but I don't think until December 1st. You can track an athelete via the Ironman website though. I linked the Ironman website on the links below. This is just another amazing miracle God has given our friend an opportunity to raise awareness for pediatric cancer as well how Taylor is going to see Hawaii too!

I'll update more later when I have more time.

Wednesday, September 26, 2007 2:08 PM CDT

Beautiful Taylor,

Four years ago today, our lives changed forever when the doctors told us you had cancer. I'll never forget the moment they gave us the news and told us you only had a 30 percent chance of survival. I remember every detail of that day, exactly where we were and what was said. It was as if time stopped forever in our lives that day.

I remember when you woke up in extreme pain on September 20th. I remember rushing you to the doctor and then taking you to the hospital. I remember waiting in the hospital emergency room for 12 hours before they called us back. I remember the nurses and doctors thought I was just a mom who was overly worried about their child, as 12 hours later the pain had temporarily subsided and you only had a low grade fever with a slightly elevated white count. I remember when the doctor came in and said "there is something abnormal on her CT so we are transferring her to another hospital as we don't handle "this". I remember us asking the first doctor we saw at the 2nd hospital if you might have cancer as our pediatrician told us we needed to take you to the ER to "Rule Out Cancer". The first doctor we saw there said, No she probably just had osteomyelitis as she looks "too healthy" to have cancer.

They took you to have another CT at the hospital along with a bone scan and MRI and blood work. I remember a surgeon came in a day later and said, "come with me". He showed me your MRI of your spine and said, "she has a tumor on her spine and her spine doesn't look too good. At first he said, we'll just operate and take it out. I didn't know tumor meant cancer. I just thought, ok we'll take it out. Two hours later he came back and said, "I can't help you she has tumors everywhere". Our mouths dropped to the floor, as that is how we were told you had cancer. I remember them wheeling your bed from the Children's Hospital Floor to the Children's Cancer Floor. I'll never forget that moment as we walked toward that sign. We still didn't know what was happening. As the door opened, a mom was coming towards us with her daughter in a wheelchair and her daughter did not have any hair. Your dad and I looked at each other as fear pierced our souls.

I remember you had a biopsy two days later to find out what type of cancer you had. The doctor came out in the middle of the procedure and said, we don't see any cancer cells, but I don't want to give you "false hope". PLEASE GIVE US SOME FALSE HOPE DOCTOR! He came back an hour later, telling us they found some cancer cells, but he wasn't sure what kind. Two days later we were told you had lymphoma. I'll never forget one doctor saying, "that's a good thing" as that is much better than what we had orginally thought". I'm thinking Lymphoma is a good thing? A day later we were told the Lymphoma diagnosis was a mistake and that they had to repeat the biopsy as they didn't get enough cells and tissue. You went through another biopsy and then two days later we were told you had Ewing's Sarcoma. I know now the doctors thought you had Ewing's Sarcoma originally, but could not speculate without the pathology report. Ewing's Sarcoma was what they had originally thought, which has a poor prognosis when it has metastizied.

Beautiful Taylor, I am so sorry I could not protect you from this horrible disease. I am so sorry I could not defeat it for you. I am sorry I could not go through all the pain and suffering for you, as I would have traded places in an instant. I did everything I could, but it wasn't enough to overcome the Cancer Monster. I will never stop fighting this monster for you baby girl and I will love you forever! Mama

That was the only the first six days of our life dealing with childhood cancer. Can you imagine how living this was for the three and a half years. We are only one family of thousands who have lived this similar scenario. Help us put an end to childhood cancer, by registering or donating to the First Annual Cure Kids Cancer Challenge Walk on Saturday, September 29th.

If you forget to register online before Saturday, you can register Saturday morning at the event at 8:00 a.m. On-line registration cuts off at midnight September 27th. You can also mail in donations to PCF as well. Pediatric Cancer Foundation Link You can pick up your t-shirts/runner bags starting Friday, September 28th from noon-7:00 p.m. at Hit the Trails Running Store in Park Square to avoid the rush.

TEAM TAYLOR'S FUNDRAISING PAGE REGISTRATION/DONATIONS LINK

Thank you all so much for donating and registering. Today I was so touched as I know some of you waited until today to honor Taylor on her diagnosis day of September 26, 2003 to donate to her team page. It really made my day! You are all so wonderful! Thank you!

Don't forget we have tons of amazing gift baskets to raffle off and lots of great food to purchase. Raffle tickets will be sold and everything is pretty much 1 raffle ticket (1 dollar) except for the Hyundai Hope on Wheels Car Raffle Ticket, which is $20. We have some amazing silent auction items too. Taylor was the 2006 Hyundai Hope on Wheels Kidspokesperson Runner Up. To view Taylor's entry, and their cause to benefit Pediatric Cancer Research, please see their website:

HYUNDAI HOPE ON WHEELS LINK

We have over 300 walker/runners registered so far and $35,000 in donations, not counting registrations. We have exceeded our sponsorship donation requirements as well! The walk/run is going to be a huge success and I can't wait to see how Saturday goes.

Thank you to everyone who has donated to Taylor's Team page. We have exceeded the $5,000 mark! I am totally blown away, by the amazing love and kindness people show each day.

Friday, September 21, 2007 5:39 AM CDT

Things are moving along wonderfully for the walk/run on September 29th. Over the past week I have been picking up many raffle items for the walk/run and I can't believe how much people were willing to donate. Last night I loaded up my car to take the items to our meeting this morning with PCF. The whole backend of my car is filled with items. One salon put together five different baskets. I was totally overwhelmed last night when I went to pick them up as I thought I was just going to pick up one basket. They just kept giving me stuff like it was Christmas. I love hair, makeup, facial, massage packages so it's gonna be hard to hand over the goods...smile. The last basket they gave me has a "Chi flat iron". Ladies I know you all know what that is so here is your opportunity to win one in a raffle for yourself or if your like most moms with daughters...for your daughter.

PCF will also be selling raffle tickets to win the Hyundai Hope on Wheels car. Taylor was the 2006 Hyundai Hope on Wheels Runner Up Kids Spokesperson. You can see her entry and her picture on their site.

HYUNDAI HOPE ON WHEELS LINK

We are going to have all kinds of great food items to purchase as well. As I mentioned before we are selling The Coopie". The Coppie Link so come out and try one.

You never know where life's path will take you and who you will meet along the way. The people who started the coopie started out by selling it at the Florida State Fair. The girls loved going to the fair, especially Taylor. Two years ago we discovered the coopie and last year we made sure we got Taylor to the fair to get her coopie fix. When we went to the fair this year, Taylor had been sick all night and was throwing up all morning long the day we went to the fair. She started to feel better in the afternoon and she insisted that we take her to the fair that day, so we did. That was just the way she was. No matter how sick she was, she never dwelled on it or let it ruin her day.

Relunctantly we loaded up and went to the fair as we were concerned about her well being, but she was well just being at the fair. We didn't ride any rides and we just took her around in her wheelchair to see all the sites and try all the food. We went to the coopie booth and she got her coopie. As we started to walk off, one of the men in the booth yelled at us to come back and he gave Taylor a little "Clever Squirrel, which is their little mascot I guess. It is a squirrel with a chef's hat on so Taylor loved it as she wanted to be a chef when she grew up. We placed the Squirrel on her desk shelf, where it still sits today.

When we started trying to find vendors to donate products for the walk/run I happened on a newspaper article which featured "The Coopie" as it is starting to take off and they had just got a contract to put them in many Walgreens stores. I felt like Taylor said, Mama you have to call them. When I called them they were so kind and more than willing to donate their product. I didn't know they lived in our community so they were happy to help. When I called them to thank them I told them about the fair story and that someone there had given her the squirrel at the booth. The owner said, I would have been the only person to do that and he then remembered Taylor from the fair. He was honored that he had an opportunity to meet her. You can see the squirrel on their website so you know what I'm talking about.

Many times we have no idea where live's journey is taking is. Things that seem to have no significant meaning do. People's paths you cross each day are for a reason. I know I feel I have no idea why this has happened to our daughter. I do know Taylor was and is an angel. She taught us more than a lifetime of experiences could teach us. She was like a butterfly who carried us on her wings to a different place in time. I know I would not be the person I am today, had I not gone through this with Taylor. We miss her more than ever and each day is empty without her. I have to hold on to God's promises to get through each day. Although we cannot see the "UNSEEN" I believe in the "UNSEEN" more than the seen.

As Taylor's diagnosis day of September 26, 2003 approaches next week, please pray for our family. The photo I placed on the home page is of us at Disney's Animal Kingdom in front of the Tree of Life. We were at Disney September 13th walking around unknowingly while Taylor had a tumor on her spine. You can see in the photo she doesn't feel good; we just thought she was hot and tired. When I look at this photo and I see us standing in front of The Tree of Life, it reminds me of the circle of life, much like the Lion King story. We do not know when our circle will be rotating, cherish each day with your children.

More children are diagnosed in the month of September than any other month of the year. Please remember September is National Childhood Cancer Awareness month.

Thank you to everyone who has donated to Taylor's Team page. We have exceeded the $5,000 mark! I am totally blown away, by the amazing love and kindness people show each day.

Please join us in honoring Taylor's memory by participating in the First Annual Cure Kids Cancer Challenge 1 mile Family Fun Walk/5K run on September 29th.

TEAM TAYLOR'S FUNDRAISING PAGE REGISTRATION/DONATIONS LINK

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Tuesday, September 11, 2007 5:01 PM CDT

The past few weeks have been very busy as all I do now is study, study, study and I am already exhausted. I made it through my first test with an A, but I have another one this week and pretty much one every week so it's pretty intense. If I make it through this test then I guess I'll splurge and get the Respiratory Care t-shirt they sell. I was afraid to buy the t-shirt and then have to throw it out as a garage sale item. So far all we do is talk about formulas and physics until our heads our spinning. I can't wait until next semester when we start our clinicals in the hospital so we are not in the classroom so much....I can't believe I just said that.

Each day is still so difficult and painful without Taylor. This past week was especially hard for all of us, but harder times are ahead of us. Taylor was diagnosed on September 26th, and then we have her birthday and Halloween to deal with in October. Today after class I went to buy Halloween decorations for her gravesite. I had a meltdown in JoAnn's Fabrics today while buying some decorations for Taylor. I pretty much have a meltdown everyday, but try to keep it together in public, not today.

Taylor and Jordan both loved Halloween and Halloween was in major competition for the most celebrated holiday of the year for the girls. Their birthday, Halloween and Christmas were always their favorite times. Just seeing the Halloween decorations everywhere breaks my heart. I guess Jordan is not going to trick or treat this year as she says she is too old. This year is going to be very different at our house on Halloween. We miss Taylor so much, but we also miss Taylor and Jordan together even more. I don't know how we are going to get through Jordan's first birthday without Taylor. A joyful day is also going to be a sad day.

My heart breaks for Jordan everyday and she is starting to struggle alot without Taylor. I think the more time goes on, the harder it is for her. She wants Taylor to come back and so do I. She wants that hole in her heart filled. She wants her best friend back and wants someone at home to play with, argue with and love. She wants her sister. This is all so hard for all of us.

The first annual Cure Kids Cancer Challenge Walk on September 29th is coming along very well now. We are all starting to feel confident that this walk will be a huge success. Thank you to everyone for donating to Taylor's Team Page....almost $5,000 dollars! How amazing is that?!!

TEAM TAYLOR'S FUNDRAISING PAGE REGISTRATION/DONATIONS LINK

Bring extra money if you are attending as we have alot of great food to eat including The Coopie, which is a chocolate chip pie. Taylor loved The Coopie and we always had to go to the fair each year just so she could have one. Now you can enjoy one too! PCF is also selling raffle tickets to win the Hyundai Hope on Wheels car, which will be at the event. Hyundai goes all over the country to different hospitals where children with pediatric cancer place their handprints on the car. Taylor was the 2006 Kids Spokesperson Runner up for the nationwide campaign. Her entry was chosen out of hundreds of entries all over the country. She and I wrote it one day while we were in the clinic at the hospital when she was getting a transfusion. I was blown away that we just sat down and she wrote it on the spur of the moment and then it is chosen as one of the top two entries in the country. I have included her speech that she wrote. Her picture is still on their website if you want to see her speech and picture on the website:

HYUNDAI HOPE ON WHEELS LINK

Hi, my name is Taylor and I was diagnosed with Ewing's Sarcoma on September 26, 2003. I was only 8 years old at the time I was diagnosed. I was very scared and I didn't know what to expect.

Luckily for me, I have an identical twin sister and a great family who have helped me through it all. My sister Jordan donated her stem cells to help me recover from chemotherapy when I can't make my own cells. My mom quit her job to take care of me, and my dad shaved his head for me because I lost all of my hair.

I was in remission for five months, but unfortunately I relapsed on my last month of treatment last January 2005. Basically, I have been getting chemotherapy for 28 months now.

I try to live a normal life the best I can and attend school most of the time. I made President's honor roll the first nine weeks of school this year and made the regular honor roll the second nine weeks of school.

I don't let cancer run my life. It's just something I have to deal with every day and make the best of it. My life has changed a lot over the past two-plus years and I am now 11 years old. Although I get very tired of getting chemotherapy and I just want to be a normal kid, I have learned to live each day as happily as I can. I hope my story can inspire others to realize each day is a gift and we have to live for today.

Please honor Taylor's memory by joining us at the First Annual Cure Kids Cancer Challenge 1 Mile Family Fun Walk/5K run on September 29th in Fishhawk Ranch. Taylor was diagnosed on September 26, 2003.

PLEASE ALSO CHECKOUT THE LONELIEST ROAD CAMPAIGN LINK BELOW. FIVE FATHERS FROM ALL OVER THE COUNTRY, INCLUDING OUR FRIEND SYDNEY'S DAD, ARE RIDING 3700 MILES TO RAISE MONEY FOR A DRUG TO HELP THEIR CHILDREN WHO ALL HAVE NEUROBLASTOMA. THEY STARTED IN CALIFORNIA ON SEPTEMBER 10TH AND WILL FINISH IN WASHINGTON DC ON SEPTEMBER 29TH. I know we would all ride to the ends of the earth to help our children. Please see the link below. They have raised over $100,000! You can watch their progress on YouTube. It won't link here for some reason. You have to go on YouTube and plug in Lonelist Road Campaign to bring it up and watch.

LONELIEST ROAD CAMPAIGN LINK

Sydney's website:

http://www.caringbridge.org/fl/sydneysims/You will have to copy and paste as I don't have time to link it right now. Her mom is selling special bracelets to go towards the campaign and are on her website. We all just want a cure for these kids!

Friday, August 31, 2007 11:22 AM CDT

I haven't had any time to update lately since starting RT school two weeks ago. So far I almost had to perform CPR on myself due to being overwhelmed with mathematical formulas and physics. I thought I was done with all of that, but I guess not.

Things have been very difficult and each day is so painful without Taylor. In class we have discussed all kinds of respiratory issues. Many of them were experienced by Taylor. I didn't realize that this would bring the images and pain of her last days to the front of my mind each day in class. I only have God to rely on to get me through these days as I can't do it without God. The pain is unbelieveable and controls your every waking moment. I miss Taylor so much.

We are working very hard to make the First Annual Cure Kids Cancer Challenge Walk a huge success, but we really need people to REGISTER to walk as soon as possible. We have to turn in our printing needs for the t-shirts in the next few weeks as it takes at least 2 weeks to get them printed. We know many people will wait to register the day of the event, but you may not get the t-shirt size you want if you wait until the last few days or on the day of the event. Please register if you can in the next few weeks.

This is a very important cause my friends. I cannot tell you how painful it is to be without Taylor. I cannot emphasize the horror of what it feels like to pick out a headstone and gravesite for your child. It is the hardest thing I have ever had to do. It is almost unimaginable that we now make Sunday visits to the cemetary rather than going to Disney, the movies, bowling, or to play put-put golf which were some of Taylor's favorite things to do.

Thank you and God bless everyone who has donated to Taylor's Team Fundraising Page. Words cannot express our gratitide and know that all the money raised will go to help another child live without cancer. No child should have to deal with cancer and no parent should have to make Sunday visits to the cemetary. This might sound harsh, but this is our reality. We are one of many families who have to live without our daughter for the rest of our lives on this earth. Please honor Taylor's memory by registering to walk or donate.

I copied Cary's entry from yesterday. I didn't know he put an entry as I haven't had time to check the site lately. We are both feeling the pain and loss of Taylor. Jordan aches for her sister each day and misses her more than words can say.

Hello All,

When I read the poem, all I could do is think of all the time we spent at the hospital. Each time Taylor was there for an extended stay, she would call me at work and tell what she wanted for dinner as she never would eat the hospital food. I always looked forward to taking her dinner. Sometimes when I arrived she was asleep, or sick, or Mary would give me a rundown of the days events which were usually filled with some kind of traumatic experience that was unsettling to both of us. I recall these times like it was just yesterday because that was our life. It was hard, but grief is so much harder. I miss Taylor so much, my heart breaks every day. I want to hear her call out for me when I come home, or leave me her notes about giving her a kiss goodnight when I get home late from work, no matter what time it is. I could never imagine how much sorrow I feel almost daily. My appearance is always happy, I smile alot, but I cry on the inside. I have to be strong for my family, but I am sad. I miss her.

Taylor was diagnosed on September 26th, 2003 and the walk is September 29th. I can't think of a better way to honor her memory as well as put an end to childhood cancer. I have linked Taylor's Team Page below. Once you go into the site, you will see where you REGISTER TO WALK or DONATE if you can't participate.

I copied the daily word I read on the first day of class. I cried when I read it that morning before starting a new chapter of my life:

"'I will come to you and fulfill My gracious promise to bring you back to this place. For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon Me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you seek Me with all your heart.'"

God's plan has always been to give us hope and a future, to prosper us and keep us from harm, but His plan can never be separated from a life devoted to Him. There is no hope - no future or security - apart from resting in His arms. And the only lasting prosperity and peace comes as we walk in step with His Spirit. Why do we not trust Him to fully guide our path? And why do we seek His plan for our life without bothering to first seek Him?!

God's plan is for us to be restored to Him and glorify His name as we love Him with all our heart. All other plans regarding the specific circumstances of our existence flow out of His plan for a loving relationship filled with worship; "seek first His Kingdom and His righteousness and all these things will be given to you as well" (Matthew 6:33). Seek Him first!

Yes, He has promised a glorious future - not necessarily a future free of trouble, but a future filled with "the peace of God which transcends all understanding" (Philippians 4:7), a future where we can learn real prosperity by "being content in any and every situation" (Philippians 4:12). But this future can only be had by those who seek Him with all their heart.

The First Annual Cure Kids Cancer Challenge 1 mile fun walk/5K run is coming along and we are just a little over a month away from the event.
We are having a Family Fun Day after the race/walk so please plan on joining us even if you don't want to walk or run, but just have FUN!

For more information on the Pediatric Cancer Foundation, click on the following Link:

Pediatric Cancer Foundation Link

Please remember September is National Childhood Awareness Month and more children will be diagnosed this September than any other month of the year. Please join us or donate to the first annual Cure Kids Cancer Challenge 1 mile walk and 5K run on September 29th.

To donate or register specifically for Taylor's Team, click on the following link.

TEAM TAYLOR'S FUNDRAISING PAGE REGISTRATION/DONATIONS LINK

General Information on Registration/Donations for Cure Kids Cancer Challenge Link



3B (CANCER AWARENESS )

Please come on in and visit 3B

There is some children I want you to see
The floor's nice and cheery the people are great,
Walk right on in but do not hesitate.
In one room a child so ill from the drugs
A mother so gently will offer her hugs.
The child beside them asleep by the door
Has long curly locks falling out on the floor.
An IV is beeping and bloods backing up
The tubing is pinched and the needle is stuck.
In the arm of a baby asleep by his dad
This is their life, this is so sad.
Come on just keep going don't stop on me now
There's so many things I must show you somehow.
In the corner lays Taylor she's been here a while
Her parents so tired they can't even smile.
The tumor behind those big beautiful eyes
Is causing her pain, that's why she cries.
But oh there is Shawn all ready to play
Maybe we could go watch him if you could just stay.
His parents are reading about meds he could take
But the money ran short and the research to late.
For this child and so many as death is their fate.
They been here forever, but the drugs just aren't right.
The cure is out there, but the moneys too tight.
But just keep on walking as you can escape
By just walking out as it isn't to late.
But for those kids that you just left behind
Will you give them some hope will you give them a sign.
That the people out there in the world are so kind.
They can part with a dollar to help with the healing
That by saving a life they will have a good feeling.
The child in the corner may be yours someday
And the dollar will be there for you I will pray.

Sunday, August 19, 2007 7:41 AM CDT

I found a poem/writing that I thought was very appropriate and a true insight of what life is like for a children with cancer as well as the parents.

3B (CANCER AWARENESS )

Please come on in and visit 3B

There is some children I want you to see
The floor's nice and cheery the people are great,
Walk right on in but do not hesitate.
In one room a child so ill from the drugs
A mother so gently will offer her hugs.
The child beside them asleep by the door
Has long curly locks falling out on the floor.
An IV is beeping and bloods backing up
The tubing is pinched and the needle is stuck.
In the arm of a baby asleep by his dad
This is their life, this is so sad.
Come on just keep going don't stop on me now
There's so many things I must show you somehow.
In the corner lays Taylor she's been here a while
Her parents so tired they can't even smile.
The tumor behind those big beautiful eyes
Is causing her pain, that's why she cries.
But oh there is Shawn all ready to play
Maybe we could go watch him if you could just stay.
His parents are reading about meds he could take
But the money ran short and the research to late.
For this child and so many as death is their fate.
They been here forever, but the drugs just aren't right.
The cure is out there, but the moneys too tight.
But just keep on walking as you can escape
By just walking out as it isn't to late.
But for those kids that you just left behind
Will you give them some hope will you give them a sign.
That the people out there in the world are so kind.
They can part with a dollar to help with the healing
That by saving a life they will have a good feeling.
The child in the corner may be yours someday
And the dollar will be there for you I will pray.

This poem/writing really touched me and I hope it touches you too.

The First Annual Cure Kids Cancer Challenge 1 mile fun walk/5K run is coming along and we are just a little over a month away from the event. Our next meeting is Wednesday, August 22nd at Grace United Methodist Church in Lithia from 9:00-10:30. If you live in the area and would like to help, please feel free to join us as we would love to see you get involved and we still need volunteers to help.

We are having a Family Fun Day after the race/walk so please plan on joining us even if you don't want to walk or run, but just have FUN!

For more information on the Pediatric Cancer Foundation, click on the following Link:

Pediatric Cancer Foundation Link

Please remember September is National Childhood Awareness Month and more children will be diagnosed this September than any other month of the year. Please join us or donate to the first annual Cure Kids Cancer Challenge 1 mile walk and 5K run on September 29th.

To donate or register specifically for Taylor's Team, click on the following link.

TEAM TAYLOR'S FUNDRAISING PAGE REGISTRATION/DONATIONS LINK

General Information on Registration/Donations for Cure Kids Cancer Challenge Link



If We Could See Beyond Today

If we could see beyond today
As God can see,
If all the clouds should roll away,
The shadows flee;
O'er present grieves we would not fret,
Each sorrow we would soon forget,
For many joys are waiting yet
For you and me.

If we could know beyond today
As God doth know
Why dearest treasures pass away,
And tears must flow;
And why the darkness leads to light,
Why dreary days will soon grow bright,
Some day life's wrong will be made right,
Faith tells us so.

If we could see, if we could know
we often say,
But God in love a veil doth throw
across our way.
We cannot see what lies before,
And so we cling to Him the more,
He leads us till this life is o'er,
Trust and obey.

Wednesday, August 15, 2007 5:25 AM CDT

Last Saturday my friend Holly and I as well as Amanda from PCF went to the Back to School Festival to raise awareness and let people know about the walk in September. It was so hot that at one point I thought I was going to pass out. I'm not sure why, but for some reason the heat really affected me on Saturday. The running store graciously let us share their tent on Saturday, but where we were positioned, we didn't have any shade and there was no air. I jokingly and affectionately say we had the tent with no shade.

One of Holly's boys won a prize from one of the booths there from a drawing. They had a MC announcing people winning prizes from registering at booths. I was told at one point that they called my name and I must have won a prize. I had just registered to win something at one of the booths so I went up to claim my prize. I said hi I am here to pick up my prize from the drawing. They looked at me and asked me my name and there wasn't any prize there for me. They said, Oh you need to move your car because it's about to be towed. I guess my prize was that someone heard my name being called and I didn't get my car towed! Great, I'm a winner today.....

I am trying to set up a blog page, but I didn't know how time consuming it is and how computer challenged I am. I would like to use a blog as I feel a little uncomfortable journaling on caringbridge since Taylor has passed away. I hope to get that done in the next few weeks, but it is alot harder for me to do that I thought it was going to be.

Working on this walk has been very emotional for me as I talk about Taylor to many people who didn't know her or are aware of pediatric cancer. This week I have been feeling very uneasy and very emotional and overwhelmed with grief. I think it is because Jordan is starting school next week and Taylor is not. The emptiness I feel despite how much I pray and try to fill it with good things does not go away. The quietness of our house is difficult to deal with and a constant reminder of our loss.

I'll never forget last year when the girls were starting middle school Taylor said, Mama I just want to go for the for the first three days of school in a row. She wanted to start middle school with a fresh outlook yet she knew we had chemo coming up within the first two weeks of the school year. When I think of her small expectation of trying to get to school the first three days of school, it breaks my heart as all she wanted was to have a normal life, yet she knew she couldn't.

It is going to be very difficult to go to the open house this year and buy one yearbook, one t-shirt, one membership to this or that. Buying school supplies wasn't too bad as I had to buy some for myself when I took Jordan so it didn't seem to affect me as much. However, driving in the car line is going to be very hard as well as I'll never forget dropping off both the girls for the first day of school. I watched Taylor walk away with a backpack on her shoulder which made me cringe and worry as her disease was in her spine. I didn't want to, but it made her so happy to be able to walk to her classroom and hold her head up high. There were many times I had to let her do things that I worried about medically, but it made her happy.

She never wore her wig in elementary school, but as soon as middle school started she wore it everyday as she would be going to school with many kids that didn't know her and she didn't want anyone to know she had cancer or stand out. In her eyes, she was healthy and never let her disease take over her entire life until she had no control or say in the matter.

I am very nervous and scared as I start back to school next week too. I will be driving to a campus I'm not familiar with and in one of the most congested areas in Tampa. It is a very large campus as well. I start on August 22, which is exactly four months to the day that Taylor passed away. When I think of what happened four months ago and what is happening four months later, I feel sad, scared, and lost, but hopeful. At our orientation in July they already told us we would get to know everyone and tell why we decided to go into respiratory therapy on our first day. I heard one person say, I got into this program because I didn't have to take Physics to get in. I hope they are ready to hear my reason and I hope I can keep it together that day. I am starting a new chapter in my life that I am very unsure of, but I know I never want to feel as helpless as I felt the day Taylor passed away from respiratory failure. I hope I can make Taylor proud of me.

My dear freinds there are many children that are getting ready to go back to school that are receiving chemotherapy and radiation. I cannot tell you how hard it is to worry about school and getting them to the hospital for chemo and radiation and trying somehow to keep your child happy. I cannot tell you how much you worry and struggle about how your going to help your child feel successful when they don't. I cannot tell you how hard it is to watch them walk into a classroom without hair. I cannot tell you how hard it is when they are so sick and exhausted from trying to attend school even if it is for an hour. It was one of the most difficult things I had to do for Taylor.

Please remember September is National Childhood Awareness month and more children will be diagnosed this September than any other month of the year. Please join us or donate to the first annual Cure Kids Cancer Challenge 1 mile walk and 5K run on September 29th.

To donate or register specifically for Taylor's Team, click on the following link.

TEAM TAYLOR'S FUNDRAISING PAGE




We've all been in bad situations which have caused us to cry out and wonder why God didn't just make things "right." Why didn't He remove the enemy, restore our finances, or take away the hurt? And how many times have we become burdened by the apparent injustice in the world; "I envied the arrogant when I saw the prosperity of the wicked...surely in vain have I kept my heart pure" (Psalm 73:3,13).

God has the ability to "fix" every situation, but His plan is so much more. His plan is for us to know Him and His glory; to trust Him and grow while being strengthened through every trial; to continue to be "conformed to the likeness of His Son" (Romans 8:29). His plan is to prepare us for an eternity in His presence.

We must trust God to refine and strengthen our faith - even if by fire! No matter what trials we face, we must trust that "in all things God works for the good of those who love Him" (Romans 8:28). And we must continue to trust He is at work in our lives (even right now) to accomplish a true and eternal healing.

Friday, August 10, 2007 6:38 AM CDT

Things are coming along on getting ready for the walk in September. We have been busy getting sponsors, participants and donors (monetary and in-kind) for the event. I just want to thank everyone who has donated towards Team Taylor for the walk. So far Taylor's Team is up to $3,005.00! Thank you all so much. I am sure Taylor is so proud is she is in first place so far for walk donations. She was always very competitive and loved to be on top. She always won all the games we played, even if she really didn't win. She would convince Jordan that she won even if she didn't and Jordan would always give in so she would be happy.

I loaded the flyer/pledge/sponsorship form on the photo links below. All the children on the flyer are from the Tampa Bay area. Unfortunately, 4 of the children on the flyer have lost their battles with cancer including Taylor. Taylor's picture is on the back of the pledge form. Please join is in participating in the First Annual Kids Cancer Challenge. Active.com is a website dedicated to sports events and is a secure site. All the proceeds benefit the Pediatric Cancer Foundation which funds the Sunshine Project. The project consists of 25 of the top researchers in the country to find a cure for pediatric sarcomas. They are releasing 3 clinical trials this fall and it costs $12,000/child to enroll in a clinical trial which is funded through the foundation. The project needs $5 million dollars to fund research and thus far they have raised $3.4 million for the project in the past few years. Thank you for your support in putting and end to pediatric cancer!

I was very happy to attend a baby shower for my friend Heather, who lost her son Jacob in June of 2006. Jacob and Taylor battled together and were friends in this life and I'm sure they are taking care of each other in Heaven. They are buried within a few feet of each other so it makes me feel better that each of them are not alone. I know that sounds wierd, but it gives me some sort of comfort.

Heather and I were talking and saying how wonderful it was to be sharing such a joyous occasion at our church rather than attending a funeral service. Unfortunately, we had three funerals over the last year at our church, Jacob, Pat and Taylor, all of which were battling cancer. Heather's family adopted a little girl from Guatemala and she should be coming home within the new few weeks. They have 4 boys including Jacob so this little girl will be getting a lot of love and attention. Ally, was born on the day of Jacob's diagnosis. How do you explain that except God is giving them a wonderful gift of hope and joy on that particular day when their lives changed forever. I am so happy for them and it gives me hope that God does heal and bless our families through our losses. They are truly an amazing, loving family.

One of the gifts she received was a little robe. It took me back to my babyshower for the girls as someone gave me robes for the girls at my babyshower. It seems like just yesterday that I was pregnant with the girls and so excited waiting for them to come. I remember walking into their room everyday and looking at their cribs and just wanting them to be born so I could hold them and love them everyday. I remember getting impatient waiting on them to be born. I delivered the girls 6 weeks early so it wasn't like I was overdue, but at the time it seemed like I waited forever.

I'll never forget the first moment I saw my girls. They were so beautiful and I was shocked that they both had lots of blond hair like Cary. I just thought they would have dark hair because I did and it is usually dominant. I remember one particular moment when we were able to bring the girls home after being in the PICU for two weeks because they were premature. I had placed Taylor in her car seat first. They were so little they could barely see over the armrest. They were only 4 pounds each so you can imagine how tiny they were. As I was about to pick up Jordan to put her in her car seat I turned around as if it was in slow motion and saw Taylor in her seat. She was looking all around the room as we were still inside the hospital. She had this look on her face like this is my new life and what is my mission. I will never forget that moment as she was just taking it all in.

On Easter this past year we actually thought we were going to loose Taylor on that day. Things were very bad on Easter Sunday with Taylor's breathing. I couldn't even move her without her losing her breath. We had made Easter dinner and later in the afternoon she insisted in getting up and eating Easter dinner. It took three of us to be able to get her out of bed into the wheelchair and to the dinner table. All the while she was on oxygen, but she wanted to be at that table. She really wasn't able to eat as she would loose her breath, but she was at the table and enjoyed being there. One moment I saw her just looking all around the table at everyone and all her surroundings just like she did at the hospital the day we brought her home. I knew at that moment her soul was getting ready to leave this earth soon as she had completed her mission.

Taylor's mission was to bring our family into a new life and we are all very different from they way we were before her diagnosis. Her mission was to bring people together and experience hope when there was no hope. Her mission was to show us all to love like we never knew we could love. Taylor brought so many people together and taught us to forget our differences and focus on things in life that really matter. I continue to think of Taylor almost every moment of everyday. I do things to make her proud of me as well as honor God. Thank you Taylor for giving us all such unconditional love and taking our lives down a path that we would have never experienced otherwise. We love you so much and miss you more than ever. I love you, Mama

We have secured two sponsors, but we are still in need of sponsors, auction items, raffle items, participants and in-kind donations. If you are able to help in anyway, please contact me or PCF. Thank you for all your support in finding a cure for pediatric cancer.

You may register to walk, run or donate through the links below.

To donate or register specifically for Taylor's Team, you will have to copy and paste this link as I can't link her page for some reason.

http://www.active.com/donate/kidscancerchallenge/TaylorA

Cure Kids Cancer Challenge
September 29, 2007 - FishHawk Ranch Park Square

The First Annual Cure Kids Cancer Challenge will take place on September 29th in FishHawk Ranch Park Square ! This event, to benefit the Pediatric Cancer Foundation will feature a 5K Walk/Fun Run and a 1 Mile family walk where participants will collect pledges to help find a cure! All funds raised through the Cure Kids Cancer Challenge will benefit the Pediatric Cancer Foundation, a non-profit organization whose mission is to fund research that will lead to a cure for childhood cancer. The Foundation is currently spearheading a national research collaboration that has brought together the country's top doctors and institutions to work together in fast-tracking new successful treatments for children with cancer. Every dollar raised, every dollar donated helps bring us closer to a cure! Take the Challenge - join us at the first ever Cure Kids Cancer Challenge and help fund research and hope for children with cancer!

Sunday, August 5, 2007 8:53 AM CDT

We are continuing to work on the First Annual Cure Kids Cancer Challenge walk on September 29th in Fishhawk Ranch. It has been challenging, exciting, happy and sad. It helps to channel my grief and loss of Taylor into something positive and helps me feel that she is still alive in some way through the memory of Taylor. It has been very sad just thinking about all the suffering she went through and questioning why did she have to go through so much pain only to lose her battle with cancer.

Yesterday we attended a fundraiser for another child in our area with cancer. We have attended three fundraisers for children with cancer since Taylor has passed away in less than 4 months. All of which are in our community or in the immediate area. As I continue to see these children suffer it stirs up so many feelings and I don't understand why our nation is not doing more to help these children. Why does the government only allow 3 percent to pediatric cancer research and is cutting more this year? Why must the suffering continue for these children? When I see these children, I see Taylor. I guess that is why as a mother of a child who lost her life to cancer, feel I must do something rather than waiting for the world to change. She was my baby girl; one of my identical twin daughters. Why does Jordan have to grow up without her twin sister. Twins....one gets cancer, one does not...why?

I realize that I have to take that step forward, because if I don't who will. I took Jordan to see the movie Hairspray on opening day. There was one line in that movie that said, "To do nothing would be a sin." That line hit me very hard and close to my heart.

The picture I loaded is one Taylor and I took in 2006 by one of the photographers who donates his services for the Fashion for The Cure Show that PCF puts on each year. When I first got the picture I didn't really like it. I don't know why, but I didn't. As I continued to see the picture over the past year and a half it has began to really reach out to me as he really captured Taylor's facial expression in an amazing way and I now love and cherish this picture. I have this picture in our bedroom and it is the first and last thing I see each day as the picture is facing me. When I look at this picture it is if Taylor is looking right at me, which is comforting and sad at the same time. How can I not do something to honor her by trying to work towards helping PCF find a cure for these diseases. I owe that to her if nothing else.

If you would like to help in any way with the walk in September, you may donate through Team Taylor or you may register/donate on the links below. I have to copy and paste the link to Team Taylor's page because I can't get it to link below. Thank you to all of you who have donated so far. I'm in the lead so far....$800 raised in honor of Taylor to go to PCF.

http://www.active.com/donate/kidscancerchallenge/TaylorA

September is NATIONAL CHILDHOOD CANCER AWARENESS MONTH. I don't think most of the nation is aware that this is the case and we would like to change that. Taylor was diagnosed on September 26, 2003 which correlates with the event on September 29th.

Our next committee meeting for the Cure Kids Cancer Challenge is scheduled for August 8th from 9am-10:30 at the River Hills Country Club. Please join us if you can as this is being put together by volunteers for PCF. Contact Info: 813-269-0955 or
www.fastercure.org/ (copy and paste from here)

Cure Kids Cancer Challenge
September 29, 2007 - FishHawk Ranch Park Square

The First Annual Cure Kids Cancer Challenge will take place on September 29th in FishHawk Ranch Park Square ! This event, to benefit the Pediatric Cancer Foundation will feature a 5K Walk/Fun Run and a 1 Mile family walk where participants will collect pledges to help find a cure! All funds raised through the Cure Kids Cancer Challenge will benefit the Pediatric Cancer Foundation, a non-profit organization whose mission is to fund research that will lead to a cure for childhood cancer. The Foundation is currently spearheading a national research collaboration that has brought together the country's top doctors and institutions to work together in fast-tracking new successful treatments for children with cancer. Every dollar raised, every dollar donated helps bring us closer to a cure! Take the Challenge - join us at the first ever Cure Kids Cancer Challenge and help fund research and hope for children with cancer!

We've all been in bad situations which have caused us to cry out and wonder why God didn't just make things "right." Why didn't He remove the enemy, restore our finances, or take away the hurt? And how many times have we become burdened by the apparent injustice in the world; "I envied the arrogant when I saw the prosperity of the wicked...surely in vain have I kept my heart pure" (Psalm 73:3,13).

God has the ability to "fix" every situation, but His plan is so much more. His plan is for us to know Him and His glory; to trust Him and grow while being strengthened through every trial; to continue to be "conformed to the likeness of His Son" (Romans 8:29). His plan is to prepare us for an eternity in His presence.

We must trust God to refine and strengthen our faith - even if by fire! No matter what trials we face, we must trust that "in all things God works for the good of those who love Him" (Romans 8:28). And we must continue to trust He is at work in our lives (even right now) to accomplish a true and eternal healing.

DID YOU KNOW....

Cancer remains the number one killing disease of children age 20 and under, taking more young lives than AIDS, Asthma, Cystic Fibrosis and Diabetes combined.

Nearly 13,000 children are diagnosed with cancer in the US each year. Approximately 2500 children lose their battle to the disease each year.

Currently in the US, there are nearly 40,000 children being treated for a form of cancer. Of those children, 20 percent will not survive their battle.

Only three percent of the budget from the National Cancer Institute goes toward pediatric cancer research.

Tuesday, July 31, 2007 5:35 PM CDT

Today a few of us moms who volunteer for the Pediatric Cancer Foundation went to All Children's Hospital to visit the research lab where critical research is being done that PCF has helped fund. We all saw the extensive lab and all the amazing work that is being done in the lab. Amazingly they are using zebra fish to study genetics as they have very close similarities to human genes believe it or not. We were all totally blown away that these little fish play such an important part in studying gene mutations and what causes these mutations to occur, which is a factor in cancer cells developing. It is all very complicated and I don't think I could accurately explain what we saw and learned today in a scientific way, but I can tell you that today we saw hope in process.

I can also tell you that PCF is striving to release three new clinical trials this fall which is a huge as they have accomplished this in minimal time. Through the Sunshine Project they are developing drugs which show great promise in treating Pediatric Cancer. The cost for each child participating in a clinical trial is $12,000 which is also funded through the Sunshine Project for the child. It sounds like alot, but I can tell you that Taylor's medical bills were close to a million dollars. I wish Taylor could have had a clinical trial to participate in, but she didn't.

Yesterday I went to several local businesses trying to find sponsors for the First Annual Cure Kids Cancer Challenge in Fishhawk Ranch on September 29th. I find that most people have no idea that there have not been any drugs developed in the past 20 years specifically for pediatric cancer. Children are a completely different "fish" than adults. Children are on protocols that were developed for adults and over the years the drugs trickle down to the kids, which is one reason why these drugs are not working for children, not to mention the extensive and permanent damage they may have on the child. PCF is one of the very few organizations specifically researching pediatric cancer.

Unfortunately, NCI only directs 3 percent of government funding to research pediatric cancer which is why no new drugs have been developed in 20 years. The amount of children diagnosed versus the amount of adults diagnosed isn't as great, but they are not comparing apples to apples, which is why the funding is so distorted. It is also not as profitable for the drug companies because the 20 percent of children that are not surviving have "rare" forms of cancer so research is not directed to these "rare" forms of childhood cancer.

I attached a YouTube link below which is only 30 seconds of a advertising video for PCF. We saw the whole video today which was about 2 and a half minutes. The song that was sung on the video brought me to tears and I hope to be able to download the song so you can hear the whole thing. The song was written for this clip and it was all I could do to keep it together watching the video. The song talks about butterflies, rainbows and waterfalls, all of which remind me so much of Taylor.

As difficult as it is that Taylor lost her battle with cancer, we have to hold onto the hope that they will find a cure soon and I have faith they will.

Check out the YouTube link below as well as consider participating in the walk to find a cure for these diseases children are facing everyday. I hope we can take this First Annual Walk specifically for Childhood Cancer Research in the Tampa Bay area beyond Hope and onto the Cure.

You can copy and paste this link to donate and/or register for this event to join Team Taylor. I am having problems linking it below so you will have to copy and paste the address:

http://www.active.com/donate/kidscancerchallenge/TaylorA

Please join us at the Cure Kids Cancer Challenge on September 29th, 2007 at FishHawk Ranch Park Square. I have included links below where you can register online to participate. Basically an individual entry fee is $25.00 which covers the cost of a t-shirt for the event. You can register as a team which is limited to 6 people for $100.00. Basically if you have six people who want to split the cost of $100.00, it is a great way to participate at a minimal cost. You can donate any amount you wish if you cannot participate.

September is National Childhood Cancer Awareness month. I don't think most of the nation is aware that this is the case and we would like to change that. Taylor was diagnosed on September 26, 2003 which correlates with the event on September 29th.

Cure Kids Cancer Challenge
September 29, 2007 - FishHawk Ranch Park Square

The First Annual Cure Kids Cancer Challenge will take place on September 29th in FishHawk Ranch Park Square ! This event, to benefit the Pediatric Cancer Foundation will feature a 5K Walk/Fun Run and a 1 Mile family walk where participants will collect pledges to help find a cure! All funds raised through the Cure Kids Cancer Challenge will benefit the Pediatric Cancer Foundation, a non-profit organization whose mission is to fund research that will lead to a cure for childhood cancer. The Foundation is currently spearheading a national research collaboration that has brought together the country's top doctors and institutions to work together in fast-tracking new successful treatments for children with cancer. Every dollar raised, every dollar donated helps bring us closer to a cure! Take the Challenge - join us at the first ever Cure Kids Cancer Challenge and help fund research and hope for children with cancer!

Our next committee meeting for the Cure Kids Cancer Challenge is scheduled for August 8th from 9am-10:30 at the River Hills Country Club. Please join us if you can as this is being put together by volunteers for PCF. Contact Info: 813-269-0955 or
www.fastercure.org/ (copy and paste from here)

I wanted to also share what was in today's daily word which talks about faith and hope. It states all of my favorite bible verses so I thought I would share them with you.

In the message "Eternal Healing" we saw that God's plan will often allow trials for the purpose of bringing us to a greater understanding of His glory. God's desire is for us to turn our eyes from the things we can see and begin to trust the things which are unseen; "for what is seen is temporary, but what is unseen is eternal" (2 Corinthians 4:18).

This lesson is obviously important as we face extreme hardship, but it's even more necessary as the trials begin to fade. The temporary things of this world (even the good wholesome things) will never satisfy the deep longing of our heart. We will always hunger for more until we place the entirety of our life firmly in the unseen hand of God - the same loving hand which holds all of creation.

Trusting in what we cannot see is the very essence of our faith; "Now faith is being sure of what we hope for and certain of what we do not see" (Hebrews 11:1). We will never find true contentment and peace until we completely "trust in the Lord with all your heart and lean not on your own understanding" (Proverbs 3:5). Our trust should be consistent and invade every area of our life.


DID YOU KNOW....

Cancer remains the number one killing disease of children age 20 and under, taking more young lives than AIDS, Asthma, Cystic Fibrosis and Diabetes combined.

Nearly 13,000 children are diagnosed with cancer in the US each year. Approximately 2500 children lose their battle to the disease each year.

Currently in the US, there are nearly 40,000 children being treated for a form of cancer. Of those children, 20 percent will not survive their battle.

Only three percent of the budget from the National Cancer Institute goes toward pediatric cancer research.

Saturday, July 28, 2007 10:27 AM CDT

I am getting nervous as well as excited about the first annual Cure Kids Cancer Challenge on September 29th, 2007 at FishHawk Ranch Park Square. I have included links below where you can register online to participate. The PCF link is there too in case you would like to get more information or help with locating sponsors or volunteer. Basically an individual entry fee is $25.00 which covers the cost of a t-shirt for the event. You can register as a team which is limited to 6 people for $100.00. Basically if you have six people who want to split the cost of $100.00, it is a great way to participate at a minimal cost. I registered as Team Taylor, but since it is limited to only 6 people I guess people can't specifically join that team, but you can create your own team called Team Taylor 1 or 2 or whatever you like. You can also just donate if you are unable to participate.

September is National Childhood Cancer Awareness month. I don't think most of the nation is aware that this is the case and we would like to change that. Taylor was diagnosed on September 26, 2003 which correlates with the event on September 29th.

In honor of Taylor and many other children nationwide, please think about donating and/or participating. More children are diagnosed in the month of September than any other month during the year. This is partly because of kids going back to school and becoming active again by attending school.

Our goal is to someday make this event as big as the National Breast Cancer walk they have nationwide.

When I think of Taylor's diagnosis I can't believe she was only eight years old at time of diagnosis and fought until she was almost exactly 12 and a half years old. An eight year old is so small, but there are children diagnosed much younger than Taylor.

Yesterday I went to my orientation at school for the program I am starting, mostly due to Taylor's cancer spreading to her lungs. I was a little nervous, but I thought of Taylor and how all she wanted to do was go to school. I went almost 30 days thinking I wasn't going to get in from the time I got the first letter until I got the second letter so I checked out numerous colleges around the Tampa Bay area. I became very frustrated as they were all extremely expensive and very difficult to get into. USF is so hard to get into you pretty much have to have a 4.0 average. Many of today's kids are able to exceed a 4.0 average by taking advanced classes. Back in my day they didn't have this option. In addition, I had missed all the deadlines for this calendar year as well.

A few days before I got my acceptance letter, I was crying and telling Cary I know I can do it if I could just get a chance, but I can't even get a chance to try. I kept praying and thinking of something Taylor said to me one day about school which was, "Mommy, you don't know what it's like to not be able to get the grade you deserve". Taylor missed days, weeks and months of school and she would cry all the time as she wanted to go so bad, but she became increasingly weak so she just couldn't go. Taylor was so intelligent and all she wanted was the opportunity to learn. She wasn't able to go to school much at all over the past year and Jordan would bring home her math homework and say I don't know how to do this. Taylor would look at the problems and say, Oh, you just need to do this. I was always amazed at her ability to think and understand math even though she missed most of the school year.

I also remember driving Jordan and her friend to school each day and dropping them off. Taylor was with me many of those mornings as we would proceed to the hospital after taking the girls to school. She would watch Jordan walk away as we pulled away. I know it broke my heart everyday I had to do that, but I imagine Taylor's heart was just in pieces and that must have been so hard for her. She really never complained as she knew we had to get chemo and/or radiation to try and keep her disease at bay. There were some days though when she cried alot because she just wanted to be at school. I could really feel more than ever how Taylor must have felt watching everyone else go to school and succeed.

Needless to say I was a little nervous, but when I thought of Taylor the nervousness went away. I prayed for God to give me someone I could connect with as I figured I'd be the oldest person there, but I wasn't. I think there was one lady who was older than me...smile. We met in a big auditorium so all the people were there for all the health science programs. Amazingly, I sat next to a lady who is younger than me, but in her 30's and also in the respiratory program. We got to talking and she has one daughter the same age as Jordan and her daughter's birthday is October 22; the girl's birthday is October 28th. I think I met someone who was more nervous than me and we had alot in common.

I think of how all of this worked out and that I was able to finish all the requirements for the program at a time in my life that I would be lost otherwise. In addition to the prerequisites, I was able to take 14 hours of what would be required of me once I got in that I don't have to take now. All of which I have done since Taylor was diagnosed. (I don't know how I did it either looking back).

What is truly amazing is that God knew when he was going to take Taylor and he knew exactly when I should go to school and allowed me to hang in there even during the most difficult times in my life. I had started back when Taylor was in remission, but she relapsed in February of the first semester I started back. God kept saying, don't give up, keep going even though I wanted to quit so many times. I held on thinking maybe I can learn something or understand Taylor's disease and maybe I can help her by learning. It allowed me to understand and research more for her, but ultimately it wasn't enough.

They told us yesterday how hard it was going to be and my mind started drifting like Charlie Brown in the classroom....whamp, whamp, whamp, blah, blah, blah. I looked around at all the respiratory equipment which Taylor had to be tested in or use which was very familiar. The best thing I got out of yesterday was a saying they had posted on the wall for the Respiratory program which said:

It's not the amount of breaths you take in your life, it's the times that take your breath away.

Ok, I must be in the right place God as you put me here. After all you made sure I got the acceptance letter the day before I left for Hawaii and knew that I wouldn't be back in time if I hadn't got it that day. I'm sure Miss Taylor bugged you until you said...It is done.

Today while I was looking for some paperwork in a file drawer I found a piece of paper Taylor had written on probably in the third grade as it was written neatly enough that I could read it, but it was on the wide ruled paper. It had butterflies all around the border and she had written:

Dear Mom,

You are very special to me. Thank you for taking care of me. I love you very much! Love, Taylor.

I hadn't been looking for that or even knew it was there. Just when I think I can't do this and go on with life without Taylor, she reminds me that she has never left.

Cure Kids Cancer Challenge
September 29, 2007 - FishHawk Ranch Park Square

The First Annual Cure Kids Cancer Challenge will take place on September 29th in FishHawk Ranch Park Square ! This event, to benefit the Pediatric Cancer Foundation will feature a 5K Walk/Fun Run and a 1 Mile family walk where participants will collect pledges to help find a cure! All funds raised through the Cure Kids Cancer Challenge will benefit the Pediatric Cancer Foundation, a non-profit organization whose mission is to fund research that will lead to a cure for childhood cancer. The Foundation is currently spearheading a national research collaboration that has brought together the country's top doctors and institutions to work together in fast-tracking new successful treatments for children with cancer. Every dollar raised, every dollar donated helps bring us closer to a cure! Take the Challenge - join us at the first ever Cure Kids Cancer Challenge and help fund research and hope for children with cancer!

Our next committee meeting for the Cure Kids Cancer Challenge is scheduled for August 8th from 9am-10:30 at the River Hills Country Club. Please join us if you can as this is being put together by volunteers for PCF.

DID YOU KNOW....

Cancer remains the number one killing disease of children age 20 and under, taking more young lives than AIDS, Asthma, Cystic Fibrosis and Diabetes combined.

Nearly 13,000 children are diagnosed with cancer in the US each year. Approximately 2500 children lose their battle to the disease each year.

Currently in the US, there are nearly 40,000 children being treated for a form of cancer. Of those children, 20 percent will not survive their battle.

Only three percent of the budget from the National Cancer Institute goes toward pediatric cancer research.

Wednesday, July 25, 2007 12:58 AM CDT

Today along with a few other moms, I met with the Pediatric Cancer Foundation to discuss the first annual Cure Kids Cancer Challenge on September 29th in Park Square in Fishhawk Ranch. Only a handful of moms and other dedicated volunteers are trying to put this walk together and there is so much work to be done. This walk is going to put together mainly by volunteers and we desparately need your help! All the proceeds will benefit the Pediatric Cancer Foundation to fund pediatric cancer research.

If you are interested in getting involved with a corporate sponsorship or help by volunteering your ideas and/or any assistance, please contact me via email and/or PCF. Anyone is invited to join in putting together this walk to help find a cure.

September is National Childhood Cancer Awareness month which correlates with the walk on September 29th. Our goal is go increase awareness around the country and around the world.

We are currently seeking sponsorships as well as volunteers to help organize this event. We will have a website set up soon to sign up to walk as well and form teams in honor of memory of Taylor and other children who have lost their battle to cancer.

Thank you so much for your support.

DID YOU KNOW....

Cancer remains the number one killing disease of children age 20 and under, taking more young lives thant AIDS, Asthma, Cystic Fibrosis and Diabetes combined.

Nearly 13,000 children are diagnosed with cancer in the US each year. Approximately 2500 children lose their battle to the disease each year.

Currently in the US, there are nearly 40,000 children being treated for a form of cancer. Of those children 20ill not survive their battle.

Only three percent of the budget from the National Cancer Institute goes toward pediatric cancer research.

Dear Friend,

The Pediatric Cancer Foundation is pleased to announce the First Annual Cure Kids Cancer Challenge will take place on Saturday, September 29, 2007 in Park Square in FishHawk Ranch. The Cure Kids Cancer Challenge is a fundraising walk/fun-run featuring a 5K and a 1 mile course. This event is being run by the friends and supporters of the Pediatric Cancer Foundation as a way to pay tribute to the many children in our community that have battled cancer. All proceeds from the Cure Kids Cancer Challenge will further the Foundation’s mission of funding research and hope for children with cancer. The Pediatric Cancer Foundation is graciously requesting your support to join us as a sponsor for this very special event.

The Cure Kids Cancer Challenge presents sponsors with the unique opportunity to gain invaluable exposure while supporting a most important cause. There are several different sponsorship levels to encourage companies of all sizes to work together with the Pediatric Cancer Foundation in finding a cure!

The Pediatric Cancer Foundation is a non-profit organization dedicated to funding and spearheading research initiatives that will lead to a cure for childhood cancer. To date, we have funded over $3.4 million in grants to the nation’s leading institutions. Most recently, we launched The Sunshine Project, a novel collaborative research initiative that has united the country’s top institutions and investigators in working to fast-track new treatments and increase the survival rate for children battling cancer. This year, we anticipate having three clinical trials in place with about 25 patients participating in each trial. With an estimated cost of $12,000 per patient, donations have never meant more to our mission. Your contribution to the Pediatric Cancer Foundation will yield immeasurable dividends by helping us save precious lives.

We are challenging you to help cure childhood cancer! Please give these amazing children hope for a cure by joining us as a sponsor! Complete the following commitment form and fax or mail it back to the Pediatric Cancer Foundation office at 813.269.8016. Should you have any questions or need additional information, please contact Lisa Orlando at 813.269.0955 or lorlando@Pcfusa.org. Every dollar raised, every item donated helps bring us closer to a cure!


Sponsorship Opportunities

The Pediatric Cancer Foundation is proud to invite you to join us for the 1st Annual Cure Kids Cancer Challenge on Saturday, September 29, 2007 in Park Square, FishHawk Ranch, in honor of the many children and families battling cancer. All funds raised will go directly to helping us find a cure for childhood cancer.


PRESENTING SPONSORSHIP: $10,000
• Name/logo prominently displayed in conjunction with event logo on all
printed materials
• Name/logo prominently displayed on Pediatric Cancer Foundation
Website
• Recognition in Pediatric Cancer Foundation newsletter (distribution of
approximately 12,000)
• Logo prominently included on event t-shirts
• Two complimentary team entries for up to twelve (6) walkers total,
including t-shirts & goodie bags for each
• Premium placement of corporate banner at post-walk party in Park
Square
• Opportunity for company representative to speak at post-walk party
• Opportunity for sponsors recognition through table display at event
• Opportunity to distribute promotional items in walker goodie bags
• Product exclusivity for brand when available
• Inclusion in all press releases & media materials

STRIDE SPONSORSHIP: $5,000
• Logo prominently included on event t-shirts
• Complimentary team entry for up to six (6) walkers, including t-shirts &
goodie bags for each
• Premium placement of corporate banner at post-walk party in Park
Square
• Opportunity for sponsors recognition through table display at event
• Opportunity to distribute promotional items in walker goodie bags
• Inclusion in all press releases & media materials

PACE SPONSORSHIP: $2,500
• Logo included on event t-shirts
• Complimentary team entry for up to six (6) walkers, including t-shirts &
goodie bags for each
• Placement of corporate banner at post-walk party in Park Square
• Opportunity to distribute promotional items in walker goodie bags


STEP SPONSORSHIP: $1,000
• Logo included on event t-shirts
• Two (2) complimentary walk entries, including t-shirts & goodie bags for
each entry
• Sign with logo recognition along walk course
• Opportunity to distribute promotional items in walker goodie bags

WALKER ENTRY: $25 individual
$100 family (up to 6 members)
• Includes t-shirt & goodie bag for each walker
• Family fun post-challenge party with food and drinks following walk

Sunday, July 22, 2007 6:26 AM CDT

Good morning friends,

Today is exactly three months since Taylor passed away. Today is particularly difficult as it is Sunday, the 22nd of July. Taylor passed away on Sunday, April 22nd.

I have been thinking alot about whether or not to continue journaling which I have struggled with for some time. I really don't want Taylor's site to be about us as our lives aren't that exciting or interesting....trust me. I thought I had made a definite decision to no longer journal, but then I realize that over 10,000 people visit Taylor's site a week which is truly amazing. I realize that over 10,000 people are looking for hope through Taylor's site each week. We are all searching, hoping and praying for answers in our own lives as well as our life with and without Taylor.

I prayed about whether or not to continue and I feel lead to keep the site active, but to only focus on positive and hopeful words I may come across in reading or discover through our journey. I also want to keep the focus on finding a cure for Taylor's type of cancer as well as all pediatric cancers. I want to make sure I honor Taylor and keep her memory alive through seeking hope and working with different organizations to find a cure.

I will probably do my own private journaling to deal with the loss of Taylor. Each day is no longer the same for us and is forever changed. I don't think people want to read about how devastated we are each week, as you do feel that way each day. You still have to get up each day and live life even if you don't feel like it. I am trying to take my grief and channel it into something positive which is the only way I think I can get through this. Grief swallows you up and you have to fight your way back every day. Sometimes many times a day.

I want to thank all of you who check on us through the website and all of you who hoped with us, laughed with us, loved with us, prayed with us and cried with us. Your guest book entries truly help us as many times you do feel alone especially when the phone quits ringing. I hope you all, well I know you all have learning something amazing from Taylor. She was a truly amazing child and is in our hearts forever.

I will keep the entries focused on her struggles and overcoming many things through her journey. I will also share positive and hopeful things dedicated to keeping Taylor's memory alive. I will also be sharing information on the Pediatric Cancer Foundation progress in finding a cure for this disease as well as many other pediatric cancers as I do feel they will achieve a cure.

Please remember that Taylor suffered more than you can ever imagine. Please keep your hearts open to helping the Pediatric Cancer Foundation as well and the Children's Cancer Research Group to channel your positive energy as well. I support both organizations as CCRG was founded through one of Taylor's oncologists and I too have great faith they will find a cure. Each organization is specializing in different pediatric cancers as each cancer cell type is a different beast of it's own. I have a link set up for both of these organizations below as well as the Children's Cancer Center who supports the families on an emotional level through the journey as well as dealing with grief after the loss of a child with cancer. They are all wonderful organizations who also need your support. I don't know how we would have made it this far without them.

Please continue to pray for our family and keep us in your thoughts and prayers. We have been touched by so many people and it is truly an unbelievable gift and we are thankful for all of you.

There is casino night event on August 9th to benefit PCF. You can click on the PCF link below to buy tickets or donate. Thank you for your support and know that your help does make a difference. My hope is that no other child or family experience this terrible disease; for now they still are.

There is going to be a walk in September in the Fishhawk area called Cure Kids Cancer Challenge to benefit PCF. September is National Childhood Cancer Awareness month. I will find out more details mid week.

You are very sad. But later I will see you and you will be so happy that no one will be able to change the way you feel. James 16:22

Sunday, July 15, 2007 9:58 PM CDT

We made it back from Hawaii on Saturday afternoon. The only two things bad about going to Hawaii is the flight there and the flight back. We left at 8:30 pm Friday evening and made it back to Tampa on Saturday at 3:45 pm. We had a three hour layover in Denver and lost 6 hours on the way which was very strange to say the least. Adjusting back to Tampa time has been difficult.

Leaving Hawaii was very sad and difficult to think about returning to reality. Your mind does so many things to cope with losing a child. Sometimes my mind thinks that Taylor is off at camp or that she is on a trip like the past three summers. I know that is not the case, it is just I have those thoughts and realize that she is not at Boggy Creek Camp or a Children's Cancer Center trip and she is not going to be at home when we get back. The thought of coming home again and her not being there was very hard. Each time we went out to dinner they always sat us at a table for four. I would be enjoying myself one moment and then see the empty chair at the table and sadness would come over me as Taylor should have been there with us. She would have embraced everything and had such a good time. I tried to tell myself that Heaven is much more beautiful than we can imagine and not to feel sad or heartbroken, but you still do.

We had the opportunity to do many wonderful and exciting things. On the day we drove to Hana we stopped at the Garden of Eden on the way. They have a beautiful garden and it is appropriately called the Garden of Eden which I can now say I have visited here on earth. The drive to Hana is not about the destination, but the journey. The drive is 38 miles up a mountain at about 15 mph on a one lane road. The whole drive takes about 6-10 hours depending on how much you stop and see things on the way.

The first stop was at Twin Falls, which are two waterfalls in the rainforest. Our book we bought called "Maui for Dummies" said it was a 10 minute hike from the road, but they lied so I guess they were a dummie too. It was a 30 minute walk in the forest without a straight path. At first you see a path, but as you get further and further into the forest there is no path. We hiked over pretty rough terrain to get to the first waterfall, but it was worth the walk. The water that the waterfall falls into is very cold, I'm guessing 60 degrees at the most. The only people going in the water were men as all the women were too cold to go in. Jordan and I hiked to the around the pool so we could get a picture behind the waterfall. The waterfall had a rope and a few men were grabbing the rope and swinging into the water like George of the Jungle. I stood there and watched them for about 10 minutes and decided I had to do it too. I had to do it for Taylor and I knew that was my only opportunity to swing from a rope off a rock into the waterfall. I was the only women there that took the plunge.

Cary and Jordan watched me as I took the rope and swung into the waterfall. I didn't get my legs up high enough the first time, so I had to do it once more to get it right. The second time I managed to bring up my legs to I could swing directly over the waterfall and land into it. This was something I would have never done, not because I was scared, but because of the cold water as I don't tolerate cold very well at all. Once I was in the pool I was no longer cold and thought of Taylor playing in a waterfall in Heaven.

After the first waterfall experience we had to hike to the second which was further away. The terrain was even rougher to the second. We hiked over tree roots, rocks and water to get there. We hiked over a make-shift bridge which was nothing more than a metal beam with a hole in it. Jordan was like, Um mom there is a hole in the bridge....mom there is a HOLE in the bridge. I'm like yes Jordan I see it, just step over it and she did. I felt like the hike to the waterfalls were much like the road in life. The terrain is very rough and rigid, but the reward at the end is worth it. I have never seen a waterfall in person before and it was a sight to see.

Cary and I took a bike tour that picked us up at 2:15 a.m. and took us to the top of the volcano in Maui to watch the sunrise and then ride down the mountain 38 miles to end up 1 mile from the ocean. The sunrise atop the volcano was a beautiful sight, although it was about 45 degrees and the wind was blowing about 45 mph too. They gave us coats and gloves so we were able to manage the cold for a little while. The volcano is 10,023 feet so we were way above the clouds looking down on them. It was an amazing experience. We then proceeded down the mountain and went up to 30 mph on bike down the mountain with no guardrails...yes it was fun. Some of the curves down the mountain were 220 degrees so it was very exciting and scary at the same time. We had a great guide so I wasn't worried at all. He told us that someone goes off the cliffs everyday because they don't know what they are doing when they go without a guide. He was totally crazy and I think he was a wild child product of experiencing the 60's. He told us he took Oprah down the mountain so if he could get her down safely, I wasn't worried. It was so amazing as we went through five different climates on the way down. You get to see nature and God's creation and have no doubt that he created the earth. It was one of the most wonderful experiences that we have ever had.

We got back to our hotel at 12:30 pm and then we had Snuba at 1:30 pm. We had orginally booked Snuba on another day, but had to reschedule and that was the only time slot left. We had to reschedule at the last minute so if we didn't go, we would have lost our money, so we went. Snuba is basically scuba diving only the tank is on a little raft and you have a tube that connects you to the boat so if you get tired or need to come back up you can follow the tube if need be. It was hard getting used to breathing with the regulator and we dove about 30 feet down. The hardest thing was dealing with the pressure in our ears from diving. I think it was because we had been at 10,023 feet in the morning and then 30 feet below the ocean within the same day. Probably not the best plan of action, but we did it anyway. Jordan said snuba was her favorite thing. Our favorite thing was getting back to the hotel room at the end of the day to fall over.

Needless to say we had a wonderful time and will always remember our trip in honor of Taylor. Today was very hard getting back into being at home without Taylor again. On the next to the last day we got to see a beautiful rainbow extending out of the clouds which look like they extend from the mountain tops. I can only imagine the beauty in Heaven and I hope they have many waterfalls that Taylor can swim in. I added a few photos on the link below. God Bless

PCF is having a casino night on August 9th to benefit pediatric cancer research. See the PCF link below to buy tickets and/or donate.

August 9, 2007
5:30 in the Evening

Quorum Hotel
700 N. Westshore Blvd.
Tampa, FL 33609
(813) 289-8200

Questions?
Please contact:
Sarah Ham
(813) 286-8520 x257
sarah.ham@ngiusa.com

Sunday, July 8, 2007 9:56 PM CDT

A L O H A.......

I just wanted to take a little time to say hello and let everyone know we are having a great time in Hawaii! We have had a great time and I didn't think it would be much different from Florida.....wrong. It is so amazingly beautiful here I feel like we are in Heaven. We spent 3 days in Honolulu and we are now in Maui. So far we have been to Pearl Harbor, Polynesian Culture Center, Punchbowl Cemetary, attended a Luau and today we went on a helicopter ride and saw several islands. We have been going nonstop since we got here, but that's ok. Tomorrow we are driving to Hana to see the beautiful scenery. We have spent all our money and had to sell our return tickets on Ebay so we could afford to buy food. We leave all our possessions to whoever wants to pay the mortgage next month....smile.

I knew Maui was expensive, but my goodness I had to pay $21 for a hamburger and it wasn't that great. We found a Mexican restaurant on the way back from the helicopter ride and it was the cheapest lunch we have found yet. I was so excited to go on the helicopter ride. There was 6 of us and they distribute us according to weight. I was number 5, Cary was number 1, Jordan was number 2. I assumed I would be in the back in the middle, but when they opened the door they loaded me first, in the front right next to the pilot. I was so happy that number 5 was in the front. I was old enough to be the pilot's mother and I had to ask him how old he was.....25! He did a great job and took us on a great tour.

I had a very hard time on the 4th of July without Taylor. We actually flew all day Wednesday (12 hours total) and then went out to eat when we got here. I started crying uncontrolably at the restaurant because everyone was celebrating and there were all these kids running around. I miss Taylor so much and it was very hard without her. At first I thought flying on the 4th would be good way to avoid dealing with it, but we kept gaining daylight on the way there. We did watch fireworks at 9:00 Honolulu time, 3:00 a.m. Tampa time. We were all exhausted by the time we went to bed.

I have had moments of great joy along with moments of sadness. I'll hear a song somewhere and a rush of grief comes over me that I have no control of. I try to imagine that Heaven might look something like Hawaii as it is incredible here. I look at all the beauty that God has created and remember Taylor is with God, healed in heaven. Everything here is open air so birds are flying around inside the hotels and waterfalls are everywhere. Our hotel has penguins and white and black swans everywhere. The stars here are so visible you feel like you can reach out and touch them. I have never seen the night sky so clear and beautiful. I could go on forever about the beauty here. I can't download any pictures as I forgot the cord for the camera to download to the laptop.

Guess what, I won the grand prize at the travel agency orientation here in Maui, which was a 5 day vacation in California and Las Vegas. I feel God and Taylor continue to give us great gifts through all the suffering.

I hadn't talked about it, but a month ago I got a letter telling me that I didn't get into the Respiratory Therapy program. I was an alternate as I guess they only take 20 students a year and it is totally based on GPA. I was devastated to say the least as I worked so hard. Mainly I was mad at myself for taking any time away from Taylor and Jordan studying over the past 3 years. I studied so hard as I think I thought if I could understand the medical issues with Taylor, I could fix it, but I couldn't. I chose the program because Taylor's respiratory problems was the reason we couldn't go to transplant as well as taking her life. I tried to remain thankful and joyful and try and understand God always has a plan. On July 3rd I got a letter from them that they reevaluated me and they accepted me! I had to get my paperwork in by the 13th and we don't come home until then so I would have missed the deadline. They eliminate you if you don't make the deadline. God gave me the gift of allowing me to get that letter on the 3rd so I could sign it and get it in before we left and enjoy our vacation.

Sometimes you go through so much and feel so low it hurts beyond comprehension. I have found that God continues to bless us even through all the pain.

I will put some pictures on of our trip next week. Until then, keep the faith, even in hard times.

Aloha.....Mary Kay, Cary and Jordan

Saturday, June 30, 2007 6:06 PM CDT

This past week has been the hardest week yet for us without Taylor. I'm not sure why it has been so hard, but it seems that each day that goes by she seems farther and farther away and out of reach. Your mind does all kinds of things to cope with losing a child. You go through disbelief, shock, loneliness, despair, hopelessness and feeling lost. I still wake up each day not believing that our beautiful Taylor is no longer on this earth.

I think the fact that the fourth of July is approaching is one of the many factors enhancing the feelings of grief. It just doesn't seem right that the world continues to spin and life goes on without Taylor. You feel like you are in the midst of being stuck in time and the world around you is speeding by whether you like it or not. We are all searching for our places in this world now as we don't know where we fit in. I don't know if we will ever get over the void of losing Taylor in our family. It is a new way of life that none of us wanted to have to deal with.

Imagine one day you wake up and your child is gone, who would you be. I know I was so busy that I didn't have time to deal with any of my feelings until now. The silence in our house is deafing at times and I have to have the TV or radio on so the silence doesn't overtake me with grief. I just want my beautiful Taylor back. I know she can't come back, but you go through this whole thought process of wishing, hoping and even begging God to bring her back. I am so happy we have Jordan, but I just miss them playing, laughing and even fighting together. I am struggling to be a good mom and not fall apart in front of Jordan, but it is difficult at times. I just want my babies back...together.

Taylor was such a firecracker and thinking about being without her on the 4th is just too much to bear. I just don't understand why God called her home at such a young age. I don't understand all the suffering and pain she went through. I understand how God must have felt watching his only son die in front of him. I have to remember I will see her again, but the waiting is just so hard to fathom. I prayed for God to let me dream about her the other night as I haven't been able to. That is wierd as she is what I think about most of the time, so I don't know why I can't dream about her. God did allow me to dream about her that night and I was so happy that I could at least hear her and see her in my dream.

Thank you for all the encouraging words and prayers. I can't tell you how much it means when you feel alone to see that so many people care. Have a happy and safe 4th of July. I added a picture of Taylor on the 4th of July last year. She will always be a sparkler in our hearts.

I noticed her Tinkerbell watch in the picture when I pulled it up. I put it on her wrist after she passed so she would always know what time it was and know that we would be on the same earthly time. I have the same Tinkerbell watch that we got at Disney together and I always wear it. I know that someday we will be on the same sychronized time in heaven. I went out to lunch with a friend this past week and unknown to me, my Tinkerbell watch had fallen out of my purse at the Restaurant. I hadn't had time to put it on yet as I was rushing to get there. Anyway, the waiter came running out after me to bring the watch to me. I didn't even know that I lost it and I was so greatful for such a small miracle. I probably wouldn't have any idea what I did with it, had he not found it before I left. When I saw the picture from last 4th of July with her wearing the watch, God reminded me that Taylor is with us and shows us with little signs everywhere. Time on earth is just a grain in the hour glass compared to our time in heaven.

I copied the Daily Word I get each day as I thought it really hit home with where we are this week.

Peter heard the call of Jesus in the middle of a storm and "got down out of the boat, walked on the water and came toward Jesus" (Matthew 14:29). Peter knew the voice of his Lord and knew that if He called, He would also provide a way to follow. But Peter soon "saw the wind...and, beginning to sink, cried out, 'Lord, save me!'" (Matthew 14:30).

Matthew 14:31-33
"Immediately Jesus reached out His hand and caught him. 'You of little faith,' He said, 'why did you doubt?' And when they climbed into the boat, the wind died down. Then those who were in the boat worshiped Him, saying, 'Truly You are the Son of God.'"

Jesus' words to Peter might seem a little harsh. After all, Peter had stepped onto the water while the other disciples remained in the boat. But Peter needed to be encouraged in what true faith could accomplish. He needed to clearly see that "with God all things are possible" (Matthew 19:26), but only if he kept his eyes focused on Jesus. God had great plans for Peter - plans which would require great faith - so Jesus ministered to Peter's doubts and fears by meeting him on the water.

Jesus then climbed in the boat with the other disciples. Rather than chastising them for their lack of faith and telling them how they should have climbed out of the boat, Jesus simply allowed them to worship. These disciples had failed to understand who He was, and now they needed to just spend time loving and worshiping their Lord. Jesus ministered to the needs of these disciples by meeting them in the boat.

The Apostle Paul had a clear understanding of ministry opportunities: "To the weak I became weak, to win the weak. I have become all things to all men so that by all possible means I might save some" (1 Corinthians 9:22). Paul never sinned in order to save the sinner, but he understood where a person was in their Spiritual journey and met them on their road to begin his ministry.

Every day God places people in our life who need encouragement and desperately need to be directed onto a path which will lead them closer to God. None of us know all the answers, and we certainly don't need to force everything we know into a single conversation, but we each are given an opportunity to minister - an opportunity which may only last a moment and may never truly return.

Let's look for the specific needs of those who cross our path and be prepared to encourage with the truth of God's Word. But as we speak the truth, whether on the water, in the boat or even back on the shore, let's minister as we meet them where they are.

You are now very sad. But later I will see you, and you will be so happy that no one will be able to change the way you feel. James 16:22

Now FAITH is being SURE of what we HOPE for and CERTAIN of what we do not SEE. Hebrews 11:1

Love, Cary, Mary Kay, Jordan and "Firecracker Taylor".

Monday, June 25, 2007 8:59 AM CDT

Well I think Cary had a good birthday weekend even though he is one year closer to being a member of AARP. Saturday I just happened to see a small article in the paper that there was a fundraiser at the Comedy Club to benefit Nikki, who is a 12 year old girl fighting a brain tumor in the Tampa area. We met their family at Children's Cancer Center and she and Taylor were in the fashion show together this past March. We had dinner reservations and fortunately I was able to make them a little later because I felt very strongly that we should try and go to her fundraiser. Nikki is struggling in the hospital right now with fevers and infections.

They are going through all too familiar territory as sadly Nikki developed a fever the 2nd day of camp at Boggy Creek so she had to be transported by ambulance to Arnold Palmer hospital in Orlando and has been there for a few weeks now I believe. Taylor loved going to Boggy Creek Camp so it touched my heart knowing how much it must have meant to her to go and end up with a fever and then end up in a strange hospital away from home. I was also surprised to learn that the fundraiser was put on by the Young Chef's Academy, which Taylor also attended in our area and just loved. The girls didn't get a chance to get to know each other very well as they treated at different hospitals, but I wish Taylor knew Nikki was involved with Young Chef's as Taylor loved cooking so much and would have loved to get to know her better and cook together.

Well the fundraiser was definately worth it as they had a hyptomist and guess who got picked to be hypnotized? Non other than the birthday boy himself! It was so funny as they hyptomist picked three people from the audience, two of which were teenage boys, who unknown to Cary, were not hypnotized. The guy just put them up on stage with Cary, so he wouldn't know he was the only one up there getting hypnotized. Now, about 10 years ago we went to a comedy show in Oklahoma and I was hypnotized so it is kindof a running joke with us and I don't like Cary to talk about it to anyone or bring it up as apparently I became Tina Turner on stage....I have no clue why. Anyway, the fact that he didn't volunteer and got picked was hysterical because we didn't know anyone there and noone knew it was his birthday either. Needless to say he became Elvis and sang HoundDog and Blue Suede Shoes with a plastic guitar and Elvis mask on his head. I took a picture of it and posted it on the photo link below. It was a G rated show so Jordan was with us and at first she was ok, but then she got really scared as I think she was afraid he would stay that way....hahaha. I assured her it was ok and that her dad would not become Elvis permanently.

I know they filmed the show for Nikki so if she sees Cary being Elvis I'm sure it will cheer her up as it was hysterical. Please check on Nikki and her family as they need your prayers and support. (copy and paste site from here)
http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=nikkihawkins

Taylor was a huge Elvis fan and it was so strange that I saw the small article in the paper as I really don't read the daily paper and I knew nothing about the fundraiser as the comedy club is on the other side of Tampa and I hadn't been on Nikki's website before. I felt so sure that we should go to this event and I'm so glad we did. I just thought it was amazing that Cary was picked as we sat kind of towards the back because Jordan wasn't too sure about the show. The fact that I had been hypomotized and was a running joke in our family for years that Cary loved to rub in my face in front of the girls and then he gets picked and then becomes Elvis is too funny. I think Miss Taylor had something to do with all of that happening as she would have just loved seeing her dad do Elvis.

Yesterday we went to church and then out to breakfast. Cary and I went to visit Taylor again yesterday at the cemetery to share Cary's birthday with her there. Last night we went to the fundraiser for CCRG, which is Dr. Tebbi's research group which was a huge success. I think they must have had over 300 or more people there and we had a great time. We saw Dr. Tebbi as well as some good friends we made at the hospital. Their daughter had Rhabdomyosarcoma and was also friends with Taylor. Thankfully, their daughter is in remission, but we all pondered why do some children go into remission and some don't. It's a question I hope research will answer someday. We were saddened to hear that the hospital is the busiest it has ever been, meaning there are more pediatric cancer patients than ever. I don't know how much worse it could be, as when we were there it was a zoo at all times. Please continue to support CCRG and PCF as they are great organizations that are strategically working on finding these answers we so desparately need.

Over all I think Cary had a great birthday weekend. We all miss Taylor so much and love her more than ever. I did win a silent auction item which was a beautiful photograph of a butterfly. I just had to have it as it reminded me of Taylor.

Please continue to pray for our family and thank you for continuing to check on us. Don't forget to check out the Elvis picture on the link below.

I just noticed that there have been over a million visitors to Taylor's site, now that is a miracle in itself that God continues to use Taylor to reach people.

Peace I leave with you; My peace I give to you;not as the world gives do I give to you. Do not let your heart be troubled, nor let it be fearful." John 14:27

Monday, June 18, 2007 7:41 AM CDT

We got through Father's Day ok yesterday although I think it was more difficult than Mother's Day for me. I guess because I know how much Taylor adored her dad and how painful it was for her not to be with us yesterday.

Jordan and I took Cary out to breakfast yesterday and then we all went to the cemetary to see Taylor. That was the first time we had all three gone together at the same time as a family. We all then went to go see SpiderMan 3 on the IMAX screen which was very exciting. We all missed Taylor though as we went there as a family many times.

We all seem to have a hard time on Sundays as Taylor passed away on Sunday, April 22nd. Yesterday was really 8 weeks since she has left this earth although it wasn't the 22nd of June yet, which marks exactly 2 months. I am sure that is no coincidence that she passed away on a Sunday as I know that is the Lord's Day and also the day he decided to take her home.

On Saturday I was outside in the backyard washing off the deck as Cary had just mowed the yard and then all the small dirt particles go through the screen, which then goes into the pool. I had been out there a couple of hours prior to him mowing. As I was washing the deck, something told me to look up. As I looked up I couldn't believe it as there was another halo cloud above our house. I stared at it for a few minutes and I thought I'll show Cary when he gets done mowing as he is almost done. Then I thought no, I'm going to go show him now. I gave him my sunglasses and I said look up. He looked up to see the beautiful halo cloud and he said I knew I was going to see that today because I read the website this morning. I had posted his reading at Taylor's service in honor of Father's Day. It had the beautiful rainbow colors around it, just like the one at her service.

I took a picture of it although I really couldn't see what I was taking a picture of us it was so bright you couldn't see the digital screen on the camera. I went back to the backyard and when I went back, the halo cloud disappeared. Had I not ran out to show Cary at that moment he would have missed seeing it. I am sure that was God's way of showing us that Taylor is with him and that she is watching over us.

We have never seen a halo cloud ever before in our lives until we walked out of the church at Taylor's service to do the balloon release. I didn't think we would ever see one again, but God showed us otherwise. I just happened to feel like being outside on Saturday and just happened to look up at that moment as I had been out there for a couple of hours without looking up prior to that moment. I almost mowed the lawn for Cary as part of Father's Day, but it was too hot for me and was going to wait until evening if he didn't feel like doing it. He mows in the heat of the day all the time, but I just can't handle it. Anyway, I guess he was supposed to be mowing at that time, rather than sitting on the couch....smile.

I posted the picture I took on Saturday on the photo links below. It is truly an amazing photograph. You will have to enlarge it on your screen to see the whole thing. You can't see the rainbow around the cloud as well as seeing it with your own eyes as well as the definition, but the picture is still great.

Next Sunday is Cary's birthday and we are going to attend Uncork the Cure event on Sunday for CCRG. CCRG is Dr. Tebbi's research group to find a cure for Neuroblastoma and other pediatric cancers. Dr. Tebbi was one of Taylor's oncologists and I thought what a great way to celebrate Cary's birthday as well as honor Taylor as I know we will all be missing her so much next Sunday too. I linked the website below if anyone is interested in going and/or reading about CCRG (Children's Cancer Research Group) at St. Joseph's Hospital. They are also giving away a Hyundai Hope on Wheels car, which I am going to win....smile. Taylor's was the 2006 Hyundai kids spokesperson runner up out of hundreds of entries Nationwide. I also added photos of her giving her speech in 2006 for Hyundai Hope on Wheels as well as her putting her handprints on the car.

Thank you all for continuing to check on us and please continue to pray for our family as each day is very difficult without Taylor, yet we continue to have hope in our hearts that we will see her again someday.

1 Peter 1:6-7
"For a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed."

Friday, June 15, 2007 7:55 AM CDT

For Father's Day I thought I would share Cary's reading at Taylor's service in honor of Cary for Father's Day. I added a few photos on the link below of Cary and the girls.

Hey Tay,

Dad would like to say a few things to you. Right now I feel complete heartache because I miss you so much already. I am so used to seeing you as I wake up in the morning. And occasionally hearing you say my name with your arms pointing to sky asking for a hug as I am walking out the door, or getting that call at about 4:00 in afternoon asking me if I am about to come home and if I have any plans for dinner. Always telling you “no” and “what did you have in mind”?

I want to share with you Taylor some the things that go through my mind as things I will always remember about you. I remember the exact moment your name came to me. I was at Woodland Hills walking through Foley’s when it rang through my head and since nobody really had cell phones then, I cut my trip short and went home to see how mom thought. When you and Jordan were born, I was watching Uncle Buck. We were in a special area so only 1 family person was allowed in at a time. But it was all calm and quiet, when all of a sudden about 25 people rushed in and a minute later there you were and 7 minutes later there was Jordan. It was the happiest day of my life! When we got you two home, we had you both in your bassinettes on the floor and just stared in amazement. Mom and I looked at each other and said, “What do we do now”? I resisted having kids for a long time, but I never felt the kind of heart felt love I did when I looked at you and Jordan.

I always called you my alpha baby because you were always the first to experiment or test the boundaries of what you two could and could not do. Jordan would always sit back and watch the outcome. So if you got into trouble or got hurt she just sat back and watched. And it just killed you when she did not get into trouble. If you got scolded, you always made sure Jordan was the accomplice. After bath time, you never wanted to wear clothes. All I could think about was hoping that would change before you became a teenager. Your mom and I had a pick up routine from daycare and each day I would pick you up and you would both scream DADDY! And each of you would hug a leg. I just loved that. I will miss the hugs, that’s for sure.

When we moved we really didn’t get adjusted very easily until we moved from Boynton Beach to Oviedo. You had friends, started Kindergarten, discovered lizards and frogs. We went to the parks a lot. But you hated going to those 3d movies. I remember one night I took you on the Jaws ride at Universal, and that shark came right up next to the two of you, and you never rode that again. I remember how you and Jord loved to ride the Unicorn and every time we went there you would ride that unicorn over and over. I think you record was 18.

When we moved here I was spending most of my time working, Mary was doing her career and trying to get you two through school. I’ll never forget the first time I noticed you were walking funny, and I asked you about it and you said your back was stiff. A week later you said something to Mary so she made you an appointment. But that Saturday, you came into our room crying in pain, I had a feeling it was going to be bad. When we got the news it had to be the scariest time. We did not know what to expect. Mom and I watched you and saw how scared you were as each test was very trying on all of us. We didn’t know many people but you opened that door. We needed support and found it in the community, our church, and the CCC.

You had all of your hair when we brought you home, in fact that was picture day at school and we took you to get your picture made. You can see your port just slightly in the picture. We came home to a living room full of cards gifts and people, and your teachers there to greet you. Then you hair fell out and I was there when you first saw yourself without hair. I saw the look on your face. I went to work and thought about it all day. I left early and cut all my hair off. I believe that was the day our bond became very strong. I’ll never forget that following November or even that first Thanksgiving after you started treatment, you were in the hospital and we got a 4-hour pass to go home and eat turkey. When it was time to leave you were devastated, and did not want to go back. You kept begging mommy to stay home. We all just felt crushed with the pain and suffering you were going through.

A few months later you called me at work and told me that your scans were clear and the chemo worked and there was no sign of cancer. Even though you did not stop treating, I think we made a mistake in going too easy on your treatment. The day we took you to the hotel for your ski trip, is the same day we found out you relapsed. Your mom and sister left for Chicago and I was alone. I cried all weekend and could not wait to see you. I picked up all three of you at the same time, but I was so happy you were home. I was scared because I did not know how much longer we had to spend with you.

Every night you wonder if the chemo is working. You sit on pins and needles waiting for scan results. You check your energy level and watch for fevers. That was two years ago. I cannot believe the courage the strength you always seen to demonstrate. Some days, you look great. You look normal, but I know on the inside you body if fighting for its life trying to fend off these malignant cells. I see the exhaustion in mom’s eyes. I see the fear and know she is at her witts end trying to find something, anything that will help. I see the reality that we are on borrowed time. I see the anger and frustration that permeates our thought when we hear how we can’t to this treatment or that treatment because costs or you may skew the results.

Many times you have beaten the odds, and many times we have been told to give up. We didn’t and therefore you didn’t. You always said you were going to win and always looked past the day you could get your port out and in your eyes be normal. But you know what Taylor? There is no way you could ever be normal because you are an extraordinary person. I didn’t have a son but that was OK, because I am proud of both my girls and proud to be their father.

I am sad that I am saying goodbye to you on this earth. I will never get those hugs I look so forward to in the morning or at night when you go to bed. I am sad because I will not be able to see your successes. I am sad because I will not be able to take part in your future. I am sad because I will always miss you.

I love you always and forever,

Dad

Happy Father's Day! We love you dad!

Taylor and Jordan

Friday, June 8, 2007 3:09 PM CDT

I have been struggling this week with alot of grief and missing Taylor so much. I still struggle with knowing whether or not to continue updating her site, but it is one of the only ways I am able to get my feelings out and feel like someone is listening.

Monday was very hard to begin our new lives as just the three of us. I have managed to keep very busy, mainly cleaning and organizing this past week. However, I find myself really struggling each day without Taylor. I count each day that goes by and ask God, how can we do this God. How do we go on the rest of our lives without Taylor each day. I know I join thousands of mom's in who have lost children to cancer, but it is a club I never wanted to be a member of. I really have been struggling with sleeping and am having problems of dealing with Taylor's last moments as they were very difficult ones. I have asked God to remove those visions, but I don't think I will ever get them out of my head.

Last night I was watching TV at 1:00 a.m. trying to go to sleep, a movie was playing and and the woman in the movie had an ultrasound. They listened to the heartbeat of their baby for the first time. I lost it at that point, as I remember hearing the girl's simultaneous heartbeats for the first time as if it was yesterday. I started thinking how wonderful that moment was when I heard the girl's heartbeats and how devastating it was to watch Taylor's heart no longer beat. Our hearts give us life, not only physical life but spiritual life and allow us to love. I think a part of my heart will never be the same as a piece of it is now in heaven with Taylor.

I find myself feeling lost and not knowing what will come next in our lives. I have been working on many things that I have to enter things in the computer and I stop myself wanting to use something in it with twins or twin mom. I will always be a mother of twins, but I realize my whole identity was and is my two girls. While I am keeping myself busy, the quietness at home is very hard to deal with at times.

I wonder if we are too old to have more children or adopt a child. The thought of starting over is scary, but the thought of Jordan not having in brothers or sisters breaks my heart. Cary and I are both in our 40's and I am still pursing my degree, but I just don't know if we are supposed have more children or not. I think every family I have met who has lost a child has had this thought. You have this huge hole in your family and in your heart and although you can never replace the child you have lost, you so desperately want to fill the hole in your heart.

I met with several other cancer moms yesterday as well as PCF staff and other volunteers working with PCF. We are trying to organize some things that would take place in September, which is Childhood Cancer Awareness month. It is a huge undertaking and is still in the early planning stages. If we can get the place we want for September, the word is GO.....meaning lots of hard work ahead. I am also going to start volunteering at the PCF office 2 days a week to help them with administrative needs this summer. Their office is quite a haul from where I live, but it is the least I can do to help the cause as well as give me purpose and structure. I am going to take Jordan along with me as there are things she can do as well.

Yesterday at the meeting I met a local gentleman who is a triathlon athlete and is going to participate in the Ironman Triathlon in Hawaii in October in honor of Taylor. I had no idea how prestigious this event was, but apparently over 60,000 people enter this lottery worldwide and his name was drawn to participate in the event that 1400 people participate in. I guess people and/or sponsors pay alot of money to enter this event so they can torture themselves.....smile. As an advid aerobics participant for over 20 years, I understand their pain. Anyway, I had received an email from PCF back in February that he wanted to do this as he came to know Taylor through a father of one of Taylor's good friends. I was so touched to meet him yesterday and hear him talk about the event. He is hoping to have PCF logo on his shirt along with a picture of Taylor. NBC covers the event, so wouldn't it be great for the world to see Miss Taylor on his shirt along with the Pediatric Cancer Foundation logo.

This has many parallels as Cary, Jordan and I are actually going to Hawaii this summer for our first family vacation as only the three of us. We chose Hawaii as it was always Taylor's dream to go there. I kept thinking how can we somehow take her with us to fulfill her dream. I had no idea the event was in Hawaii until yesterday and how major the event is. It also takes place in October, which will be the first year Jordan celebrates her birthday without Taylor. I thought, Ok God, that is how Taylor will see Hawaii too!

As he told the story of how he decided to do it in honor of Taylor, tears welled up in my eyes. He saw a picture of Taylor in a PCF newsletter that someone else gave him back in February. He had never been associated with PCF or knew Taylor until this friend gave him the newsletter. He said he was trying to decide who or what to honor in the event, and he opened up the newsletter and there was a picture of Taylor at a PCF event along with a check that went to PCF from the Ironman Foundation. He said he then decided to honor Taylor in the event. Ok, I already feel better since I started this journal entry as I am still amazed at God's grace and how things happen and plans orchestrated by God.

Please continue to pray for our family and pray for our beautiful Taylor in heaven above. I added a few new photos, one of which is of our dogs Roxy and Mollie that Jordan took today. I also added a picture of my great friend Pam who I have known since the 3rd grade and just recently visited in Kansas. The home page photo is of Taylor at Magic Kingdom in 2004. She was always so happy and smiling all the time. She wore that back brace for over a year, but she never let it get in her way.

Monday, June 4, 2007 7:54 AM CDT

Jordan and I made it back to Florida last night. Boy it sure is hot and humid here! The weather was so cool and humidity free in Kansas last week. I drove back to Oklahoma to pick up Jordan last Tuesday and took my niece out for her 16th birthday. Jordan and I went to our nephew's middle school to high school graduation on Wednesday and then we drove back to Kansas so Jordan could meet my friend Pam's kids. Jordan had a blast in Kansas with all the kids. We drove to Bartlesville, OK from Kansas on Friday to see my grandma. We went through all these back roads in Kansas which was nice and peaceful for me to drive through. I forgot what seeing miles and miles of farmland looked like. I think I put about 1500 miles on the rental car...

I had mixed feelings about coming home and I really began to feel them on Saturday. I felt sad to leave my mom's house along with all the memories we all had in Oklahoma as the girls were born there as well as us living there the first 5 years of the girl's lives. Sadly enough my mom and brother are stranded in Alabama and have been there since Wednesday. My mom was driving back to Oklahoma as she had been staying with us since Taylor relapsed in February 2005. At that time we were told Taylor would have nine months, but instead she lived for over two years from the time she relapsed.

My mom takes great care of her car and so it is just strange that she would break down in Alabama. Fortunately, my brother is with her as neither of us wanted her to make the drive alone. I was very upset as I really didn't feel like I got to say good-bye to my mom as the morning Jordan and I flew out I gave her a quick hug as we ran out the door at 5:30 a.m. We had hoped to spend at least three or four days together in Oklahoma before Jordan and I left, but that didn't happen. I offered to come get them, but they said that they were fine. It is 10 hours from Tampa so it would be 20 hours there and back. They had the car towed to one shop and they couldn't fix it as it is a German car so they had it towed to another shop on Friday and they closed at noon on Friday so noone has actually started to "tear down" the car as they tell me.

They should find out something today, but it sounds like the transmission was going out so I am very concerned as they are in Jasper, AL with a foreign car that is very hard to get parts for. Anyway, they are making the best of it and have made friends there already and have gone to some people's house for a cook-out already. You have to know how friendly they both are as they make friends anywhere they go.

Yesterday I went upstairs to look around at my mom's house before we left. My mom's house is unoccupied upstairs so it is pretty much full of boxes and years of stuff she hasn't gotten rid of. I looked around one room for something that might remind me of Taylor as the girls spent alot of time upstairs when they were little. I looked around and didn't see anything, but then suddenly as if someone whispered in my ear my eyes were drawn to this piece of paper that was on the wall. It was not in plain site as it was behind several boxes on the bed. It was a picture that Taylor and I had drawn together several years ago. She had drawn a rainbow and I had drawn two trees on each side and a "BUTTERFLY" in between the trees. I had also drawn a sun with a face, but nothing else in the sky along with some clouds.

I am not an artist by any means, but I couldn't believe this picture was hanging on a nail on the wall in that room. Taylor had put her name on the back of the piece of notebook paper in big letters. I am not one to draw butterflies very much, as I can barely draw a stick person. I was so amazed that I was led to go upstairs and go into that room. I really hadn't gone upstairs the whole time as we didn't need to. I thank God for the small miracles he continues to give me that lets me know that he knows how much we miss Taylor and that she is still everywhere even though we can't see her.

I was very down on Saturday since I hadn't got to see my mom and felt I was going back home to start as just the three of us. I felt scared of coming home and not finding Taylor at home. I still wake up everyday and I can't believe she is gone. I wanted to come home from a trip and find her at home with Cary, but she is not physically here. I really feel like the hard time begins now as we begin our new lives with only the three of us. Even saying that breaks my heart. I know we will be ok, but I can tell Cary is scared too. Jordan continues to handle things well although she has had her rough moments too. She broke down and cried the moment she walked into my mom's house as did I. It is hard walking through life without someone you love.

My mother inlaw had a beautiful frame made for Jordan that is surrounded in butterflies. A relative had put an entry on Taylor's site when Taylor passed away, which I did not see. I guess it caught her eye so she had it made into a picture frame. This is what it says:

For Jordan-

"And if I go while you're still here...
know that I live on,
vibrating to a different measure
-behind a thin veil you cannot see through.
You will not see me,
so you must have faith.
I wait for the time when we can soar together again
-both aware of each other.
Until then, live your life to its fullest.
And when you need me,
Just whisper my name in your heart,....I will be there."

Please continue to pray for our family as we begin our new journey as just the three of us. Life is not a destination, it is a journey and we will see Taylor again. Please pray for my mom and brother who are stranded in Jasper, AL. Pray that they will make it back to Oklahoma or back to Florida.....hahaha

Thank you for still checking on us and praying for our family.

Monday, May 28, 2007 8:37 AM CDT

Happy Memorial Day

Jordan and I made it to Oklahoma last week which was quite an adventure. I am actually in Kansas right now visiting my friend Pam and her family. We grew up together and have known each other since the 3rd grade. Jordan is at her grandma and grandpa's house hanging out with them and her cousins in Tulsa.

Getting to Tulsa was an adventure to say the least. They were having severe thunderstorms the day we flew in. Getting to Houston from Tampa was no problem, but getting to Tulsa from Houston was fun.....Our flight was delayed an hour and we had to fly two and a half hours out of our way to fly around the storm system.The flight was pretty scary due to the weather. I felt like we were on the Tower of Terror, meaning we had some pretty dramatic ups and downs. I wasn't scared though as I knew I had no control and had to have faith in the pilot and God that he would get us there safely.

I ran into someone who I had worked with almost 10 years ago in the Houston airport. He was flying to Tulsa too. He trained me years ago at State Farm in Oklahoma when I transferred into auto claims. I remember when I transferred into claims, I was like oh my gosh what have I gotten myself into as it was alot of training and test taking. I liked his class the best as he took us outside to learn the parts of a car engine. I don't know that I learned anything, but I remember what a relief it was not to be in a classroom for a little while. It is amazing how small of a world it really is.

We arrived in Tulsa at 3:30 rather than 12:30 as scheduled. When we got there the electricity was out in the airport and it was packed. Usually there is not many people at the Tulsa airport, but I think the people had been there all day trying to fly out and couldn't due to the weather.

It was fun getting our luggage as the baggage turnstyles were down also. They routed all the luggage outside via those carts they use to load the planes. The elevators were down as well as the escalators. The rental car was in the parking garage. I'm like how do I get these three huge suitcases down the stairs to the rental car. They said well...good luck. Needless to say I got the car and the luggage and we finally got to my in-laws house around 4:00 p.m. We made it to Megan's graduation which was our goal so that was the important part.

Being in Oklahoma hit me harder than I could have ever anticipated because we spent many years there with the girls. Seeing the pictures of Taylor at my in-laws and at my mom's house really took me to a whole new level of grief. They have pictures I don't have, but I never imagined it would hit me so hard. The girls use to run all over my mom's house and get into things which she had pictures of. I guess her house has such a history to me as my mom has lived there since I was 17 years old so it has many memories for me.

I have been enjoying my time in Kansas, but I am cold.....smile. The high yesterday was 67 degrees. They all laugh at me and my flannel pajamas, but it has been 90 degrees in Florida so it is a big change for me. It has rained here almost everyday too. I forgot what rain was like in Florida since we have been in a drought.

Pam has three kids, one of which is only 3 years old. I have had such a great time watching and playing with them, especially the youngest. Last night he curled up in my lap while we watched, or tried to watch the movie Cars. He is just a little busy and doesn't sit still very much. I am now one of his girlfriends he tells me so I feel pretty special. The healing power of a young child is so amazing. They make you forget all your problems and they are so innocent and sweet.

Yesterday at their church the pastor spoke on grief. It was a such a great perspective on grief and I felt like God orchestrated his words directly for me. I was so glad that they put his service on a CD so I bought it. I was thinking to whole time, I wish Cary could here this. It was a great message and helped me so much.

Well just wanted to check in. I am going back to Oklahoma tomorrow morning to get Jordan and then we are going to take my other niece out for her 16th birthday. We are going to go to Bartlesville, Ok towards the end of the week to see my grandma as well as stop by the annual bi-plane fly in they have there. My dad's side of the family are all pilots and they still have an airport hanger there. I took the girls to the fly-in when they were about three years old.

Cary and I actually went up in a bi-plane right after a crash had occurred. Unfortunately, two planes collided and all four people aboard were killed. I can remember flying over the crash site before we knew there were fatalities. I was literally a few minutes after it had happened and it happened so fast, I don't think anyone knew what was going on. I look back on that moment and think, how crazy were we to get in the plane after someone had crashed. I can't say I would do that today if I had known. I guess it parallels losing Taylor in some way. We have to get on the plane everyday despite where it will take us. We are going to fly over some crash sites and have some good landings and some bad. It is scary everyday without her, but we have to make a decision each day to walk without her on earth. We don't want to, but we have to. She is forever in our hearts and minds, but not having her here in the physical realm is very difficult to say the least.

We are supposed to fly home next Sunday so we'll check in then. Thanks for still checking on us and thank you for all your prayers. Please continue to pray for all of us as each day seems to get harder without Taylor. The night time is the hardest as that is when my mind goes "crazy" with thoughts of Taylor and "what if's". I mean I still can't believe she is gone and miss her so much and I still don't know how or why this has happened. Pray for all the families who have lost their loved ones this Memorial Day.

Tuesday, May 22, 2007 6:11 AM CDT

Things have been busy over the past week. I think I have gone out to lunch more the past three weeks with friends than I have in the past three and a half years. We appreciate all our friends calling and checking on us and I am so thankful that we haven't felt like crawling under the covers and hiding from the world. I thank God for that strength.

Jordan and I are getting ready to head to Oklahoma the end of this week for my nieces graduation. It will be a bitter-sweet trip as we will miss Taylor not being with us. I can't help but think about Taylor not being able to graduate from highschool some day. I'm not sure how I'll feel during the ceremony, but I am praying that my mind will keep the focus on the joyous time for my niece.

This past weekend Jordan had an end of the year party with some of her friends. We all had a great time of course, but at the end of the day Cary and I were wishing Taylor had been there. Taylor always wanted to have a big party once she finished chemo, but unfortunately that never happened. The girls wanted to have a party last year, but I was so overwhelmed with Taylor's treatment as well as school that I just wasn't up to putting it together. Although the party was for Jordan, Taylor was also on our minds and she would have loved every minute of it. Taylor has taught us not to put off things thinking you will do them later, but never get to them.

Jordan was confirmed on Sunday at church. That was also a bitter-sweet moment. Our pastor gave us a certificate of completion for Taylor as well as Jordan. I tried to keep it together, but I couldn't. I think the whole church was crying when our pastor gave us Taylor's certificate. She went to every confirmation class for five months except for the last two, which she missed because she passed away. That girl would go to confirmation class even if that was the only thing she was capable of that day. The girls really surprised me in that they looked forward to going and didn't feel like it was something they had to do, but something they wanted to do.

Last night Cary and I went to the Children's Cancer Center for the grief support group. It was hard going there and sitting at the same tables we sat at as a family, but we need to go. They have added on a beautiful garden and there are stones dedicated to the children who have lost their lives to cancer. I am so happy the center is growing as the need is great in the Tampa area.

We are all just trying to keep busy and take one day at a time. We all miss Taylor, but we are doing ok. We are trying to enjoy life as much as we can as well as celebrate Taylor as she wouldn't want us to be sad. As easy as that is to say, it is hard to do. I do feel her presence still and am able to smile at little things I come across that remind me of Taylor.

I put the picture on the photo link below of the halo cloud above the church when we went outside to do the balloon release at Taylor's service. There was a rainbow of colors that outlined the cloud. Although the picture is a great photograph, it doesn't do justice to actually seeing this with your own eyes. I put it back on the site because so many people have commented on it and I find it absolutely amazing as I have never seen anything like it before.

God is saying to us all B E L I E V E.......

I also linked a "You Tube" segment that someone in our area put together of all the children fighting cancer as well as those who have lost the battle. Most of them are right here in our immediate area. It will tug at your heart for sure. Please remember although Taylor and many other children have lost their battle with cancer, we are still fighting the war.

Please continue to support the Pediatric Cancer Foundation as they are one of the few organizations that are independantly doing research for pediatric cancer. It takes $12,000 to enroll one child in a clinical trial which they are launching this summer and fall. Thank you to all of you who donated to PCF in honor of Taylor. So far they have received over $1500.00 in donations that were specifically donated in honor of Taylor.

Our friend Sydney is having a fundraiser on Saturday as she has relapsed with Neuroblastoma. She has been battling 3 and a half years as Taylor did. We were fortunate in that we were able to stay here to treat, but they go to Sloan Kettering in NY to treat as they have the latest technology to treat Neuroblastoma. If you can attend on Saturday or donate, please see her website at:
www.caringbridge.org/fl/sydneysims. (copy and paste from here)

It is from 12:00-3:00 on Saturday at Twin Lakes Tree Park. I don't know the address, but I think it is a Brandon or Valrico address. I think they were going to post directions on Sydney's website. They will have face painting, cookie decorating, cupcake walk, stampin stack, Sydlets (www.sydlets.com) and a silent auction with gift baskets, gift certificates and Tampa Bay Lightning items.

Thunderbug will be there from the Tampa Bay Lightning as well as Coach Torterella and Martin St Louis. Please support this family by attending the fundraiser or donating as well as supporting them with your prayers.

Wednesday, May 16, 2007 5:36 AM CDT

Just wanted to let everyone know I made it through Mother's Day ok. However, we miss Taylor more than ever, but I feel her presence everywhere. We didn't really have a plan for Mother's Day and thought about going to the beach, but I was afraid it would be a mob scene and we would be stuck in traffic trying to get onto Anna Maria Island, which is where we go. Something told me not to go so we didn't. I learned Sunday night that there was a fatal accident on the bridge that goes onto the Island and traffic was backed up for hours. Thank you God and thank you Taylor.

I sat there after church thinking what can we do and all of a sudden I decided to go to Champps, which is this restaurant/sports place on the other side of Tampa. I had the best sandwich there in my whole life when Taylor, Grammy, dad and I went one day after the hospital. We went again, only it was Jordan with us and not Taylor. We all miss Taylor, but Jordan helps us alot and we are blessed to see Taylor in Jordan each day. I then took Jordan shopping at the International Mall....where all the beautiful people go. If you live here you know what I mean. Here I am in my flip flops and shorts, but they will still take your money.....hahaha

I had to drag Jordan around to find her a dress for confirmation on Sunday as well as my niece's graduation next week. Buying a dress isn't exactly fun for Jordan, but we had to get it done. Jordan and Taylor were taking a confirmation class which was very important to them. Jordan is being confirmed on Sunday, which will be hard without Taylor, but I am sure it will be a happy moment.

I did have alot of sadness over the weekend which rushes over me and I have to fight to not let it consume me. I allow the sadness to happen, it's just I could easily go hide under the covers and stay there, but I can't. I was in the "why did this happen God" mode over the weekend. I just can't believe Taylor is not here sometimes. I don't understand why she had to get sick and why this tragedy has happened to our family.

God reminded me in many ways that tragedy happens to everyone. He never said it was going to be easy, but he did say he is always with us. He also said we will understand some day and Taylor was needed in heaven. I often wonder if she is now an angel to help other children with cancer. I don't know, but I'm sure God has her doing something fabulous.

Last night the school had a chorus recital. Jordan sang her little solo and I know she was nervous, but she did it. The kids in the chorus wanted to do something in honor of Taylor so the dedicated the recital to our family and sang a song in honor of Taylor. It was all I could do to keep it together and it was so touching to see what an impact Taylor made on everyone at her school. I thought, WOW Taylor you are still amazing us even though you are no longer here on earth. The school also had a lock box for donations to go to the Pediatric Cancer Foundation in honor of Taylor which was wonderful.

I have learned of two people that we have crossed paths with have been diagnosed with cancer in the past few weeks. Not people who were in the cancer world, but people who helped Taylor in some way or were associated with me in someway. People who never expected it would happen to them. Cancer does not discriminate and it is among all of us. It can happen to any of us at any time in our lives.

Please continue to support the Pediatric Cancer Foundation through donations.(See the link below). I am working at the Dream Home again on Friday so come see us there. Please pray for our friend Sydney, who has relapsed with Neuroblastoma. (you will have to copy and paste from here )www.caringbridge.org/fl/sydneysims. She and Taylor were friends and they are going through tough decisions and tough times. They are having a fundraiser if you can attend or donate to help with expenses as they travel to NY for treatment.

Thank you for all your love, all your entries, all your prayers. Please know that Taylor is still working miracles and she has touched almost a million people through this site. How many people do we touch in a lifetime? Unless you are a celebrity, I am sure the number is pale in comparison. God did have a purpose for Taylor's life and he continues to glorify her purpose each and everyday. I see that someone put the verse John 14:1-3 on the site today on the guestbook entries. Someone who checked on Taylor many times weekly if not daily. I just want to let you know that was the verse we ended with on the screen at Taylor's service.

John 14:1-3 Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also.

Friday, May 11, 2007 6:03 PM CDT

Things have been busy this week with trying to do alot of catch up on things I haven't had time to do in many months. I don't really know what to say except that we miss Taylor so much. I talked to some friends about whether or not to continue the website, but for now it's basically a journal for me.

I spent two days trying to find the right decorations for Taylor's gravesite. I got everything I thought she would want on Tuesday. My mom went by the gravesite on Wednesday to see what I had done as well as to see Taylor. Yesterday I had to go by the funeral home to pick up some documents and had just enough time to go by Taylor's site before having to pick up Jordan from school. Needless to say someone had taken almost all the decorations I had put up only two days before. I was heartbroken as I hand picked those things for Taylor.

I can't imagine someone taking things off people's gravesite, let alone a child. I had a beautiful butterfly chime along with a dragonfly flag on garden posts. I had lined the posts with butterflies and flowers. I guess someone thought they needed it more than Taylor did. Her gravesite is not visible from the road and someone would have had to specifically walked by her site to see the decorations. All I could think of was that maybe someone couldn't afford to buy a Mother's Day gift and took them for their mom. I know, I'm being optimistic and nice, but I have to believe that.

Life has been so strange without Taylor and without frequent trips to the hospital and being consumed with worry. The only thing I don't miss is all the worry, fear and dread of upcoming scans, disease progression, hospital trips and watching Taylor hurt because of all the things cancer took from her. I try to focus on all the wonderful things we all did together and how much Taylor blessed our lives.

It is so hard to look at all the pictures prior to Taylor getting diagnosed as she and Jordan look so identical I just can't understand why Taylor got cancer and Jordan didn't. How can two people be molecularly the same, yet one develops cancer and the other does not. I guess that shows the randomness of Ewing's Sarcoma and that it does not have a specific known cause. I can only hope that a cure will be found soon.

I am not overwhelmed yet by the fact that Sunday is Mother's Day. I remember two years ago on Mother's Day I thought it was going to be our last with Taylor, but she proved otherwise. The picture is of her on Mother's Day two years ago. Three years ago we went to Discovery Cove on Mother's Day, which was one of the best weekends we ever had. Last year on Mother's Day we went to Orlando and were on a golf course with Warren Sapp in a real expensive custom made golfcart. It was supposed to be a football, but I swear it looked like the Flintstones car. It was later auctioned off to benefit the Pediatric Cancer Foundation. I kept thinking to myself, how in the world did we end up here God. It was such a beautiful day and we had such a good time.

I look at everyday as Mother's Day and am so thankful to have had beautiful Taylor and greatful for our loving Jordan. I not only miss Taylor, but I miss hearing and seeing Taylor and Jordan together. It is so hard to see Jordan by herself.

Everytime I have a little doubt creep in I remember the halo in the sky. I remember Taylor going to Relay for Life two days prior to her death. I remember her insistance on walking to the dinner table the night before her passing. I remember her determination and the fact that she never gave up, even in her last moments. I remember how she loved everyone and how she was never afraid to tell people exactly what she thought. I remember her smile and her laugh. I remember her "booty" dance she use to do for me. I miss her so much.

Several things have happened here and there that tell us Taylor is among us. Thank you Taylor for giving me such a wonderful memories that I will cherish forever. I love you, mama.

I added pictures of Taylor at Discovery Cove three years ago on Mother's Day as well as last year on the golf course on Mother's Day. See photo link below.

Sunday, May 6, 2007 7:27 PM CDT

I just wanted to share this photograph of the perfect circular cloud with a rainbow outlining it that was over the church at Taylor's service. It doesn't do justice to actually seeing it with your own eyes, but as you can see God gave us an amazing gift as we released the 300 balloons which all went directly to the sun in the middle. It looks like the eye of God to me. It was something I have never seen before, much like an eclipse. I just wanted to be able to share it so others could see how amazing God is even in death. After seeing this, I don't know how anyone could question eternal life. We know our Angel Taylor probably talked God into doing this for us, as she could talk anyone into anything...smile. I look at this photograph and I am just in awe.

All the books I read on death as well as all the people I talked to who had experienced losing their child or loved one, kept telling me there is this beautiful moment when you know death is inevitable and it will be peaceful and wonderful. Unfortunately, that moment never came. I kept asking God, where is the beautiful peacefulness in all of this. Well again, he showed not only me his glory, but everyone at the service as well as everyone who will see this photograph.

Please continue to pray for our family as we try to adjust to life without our beautiful Taylor. Although it has been only two weeks, it feels like 200 years. We all have this huge hole in our hearts that only God can fill for us. We all miss Taylor every moment of every day. She is the first thing we think of when we wake, and the last thing we think of when we go to sleep.

My mom and I finally watched the movie "Facing the Giants" last night. A friend brought it over a few months ago and I kept asking Taylor to watch it with me, but she didn't want to because she thought it was only about football. The movie was wonderful and inspirational and was not all about football. I cried, laughed and missed Taylor while watching it. God will reveal his plan to us in his time, not ours. However, we have to have faith no matter what life brings you. I feel we are "facing giants" everyday that we have to overcome. I recommend this movie to anyone looking for something to inspire you to continue to have faith in God, even in dire circumstances.

I am volunteering to work at the Dream Home as well as some other moms who have lost children to cancer. You may see the home from May 10th -13th and May 17th-20th. Please see the PCF (Pediatric Cancer Foundation) link below to buy tickets or go to:

http://promos.tbo.com/dreamhome/index.htm. (you have to copy and paste this as I can't link it here)

It is a $6 million dollar home that is on Davis Island. You may also call PCF at 813-269-0955. The proceeds benefit the Pediatric Cancer Foundation as well as Metropolitan Ministries. We need to find a cure for childhood cancer as I know more moms who have lost children to cancer than moms who have children who have survived cancer.

Thursday, May 3, 2007 6:09 PM CDT

This week has been a tough and lonely week for our family without Taylor, at least for dad and I. I have shared with friends that it has been harder after her service than before her celebration service. Everyone had left by Monday and we were overwhelmed by the quietness of our house. This is the part I have been scared of the most.

Jordan is still doing wonderful and going to school each day. I have been keeping busy, but still have periods of sorrow and loneliness. I have been by myself several times, which has been fine, but each time the lack of noise has been hard in our house.

Some of you know I have continued to go to school during the past two years. Many times I questioned going and continuing, but Taylor was a big part of the inspiration to go back to school. This semester has been the hardest and I wanted to quit so many times because it was so hard to leave her to go to class. Each time I went to class though, the discussion would always be on something I was dealing with in the real world with Taylor, so I felt God was telling me to continue on. I took one final yesterday and I have one more on Monday. I can only say that God has allowed me to continue to do this despite the difficulty of it all.

Once I no longer have school to focus on, I'm sure I'll hit a brick wall. The wall is already closing in. I have spent the past 3 and a half years primarily taking care of Taylor and going to school. I haven't slowed down and would literally run from the hospital to school at night. I ask God, what now God, what do I do now? I feel I have not only lost my daughter, but in a strange way going to the hospital was almost like going to work each day. I miss seeing all the nurses and talking to them. We knew so many people at the hospital that everyone that passed us in the hospital halls would speak to us on a first name basis.

I have applied for a respiratory therapist program starting in August, so hopefully I will get in. I chose respiratory due to all Taylor's respiratory problems, which ultimately took her life. I also watched my brother loose his life due to respiratory issues as well. I know God will direct me and take care of me. If I don't get in, he will have something else for me to do.

Jordan and I are going to Oklahoma at the end of the month to see my niece, her cousin graduate from highschool. We are going to stay there for several days and hopefully we will have some good times.

My priority is of course taking care of Jordan as she takes care of us with her beautiful smile each day. She has been so happy and joyful and that helps us so much.

Some amazing things have happened to let us know Taylor is still with us which gives me great comfort. Life seems so simple now; I just have to take care of Jordan and go to school. Dad just has to take care of Jordan and go to work. This seems so simple compared to what we have been dealing with for so long.

I am so greatful for all of you and so greatful I have so many great friends to hang out with. We have to learn what our "new normal" life is going to be. We haven't had a normal life in so long and it all seems so foreign. Each day we just take a step and hope we go the right way.

For now, please continue to pray for our family on earth as well as praying for our sweet angel Taylor in heaven. When Cary and I went to the funeral home last week the director handed me an article about Taylor. I looked at the date which was April 21st. My brain is trying to register this as I am thinking, you mean someone has already written an article about Taylor and we didn't know about it. (this has happened many times before). I then looked closer at the date which was April 21st, 2006. I about feel out of my chair as it was exactly one year to the date of Taylor's last day on earth as she left us on April 22nd.

I know our Taylor is forever watching over us and I feel her precense everywhere I go. We love her and will miss her forever. I can't wait until we see her again.

Monday, April 30, 2007 6:11 AM CDT

Our family would like to thank everyone for all their beautiful entries and checking in on us. We would like to thank our church, community and both the elementary school as well as the middle school they attended for their devotion to Taylor and Jordan. There are no words to express how greatful we are for everything everyone has done for Taylor and our family. Thank you Rob, our pastor and thank you to everyone who helped with the service as well as all the wonderful food. Thank you to all our family and friends. We love you.

Those of you who were not able to attend Taylor's celebration on Saturday I must share this. After an amazing, beautiful service we all went outside to do a balloon release. When we walked outside there was a perfect circular cloud or haze around the sun. The sun was perfectly positioned in the middle and there was a rainbow around the circular cloud. Everyone who was there witnessed this miracle and I have never seen anything like it before. Everyone was in awe to see this site on Saturday. We now know more than ever that Taylor is with God and God showed us himself.

Some people said it was a Halo around the cloud. Some people said, the sun represents Taylor with a halo. Some people said, it is the eye of God. It was truly the most beautiful gift we could have ever been given. When everyone released their balloons, (300 in all) they all went directly into the sun. None of them strayed away from the center of this beautiful vision.

Cary and I each wrote a letter to Taylor that we read at the service. For now, I would like to share mine as it sheads light into Taylor as well as her last few days. At the very end of her service I had asked that the picture of Taylor be up on the screen, which is the same picture on the website. I had them play Defied Gravity from the broadway show Wicked. You must listen to the words of that song, as Galinda (Jordan) says goodbye to her best friend, Alfaba (Taylor) in the song.

MY BEAUTIFUL TAYLOR

Taylor I loved you before you were born. You were so determined from the day you were born until the day you left this earth. I’ll never forget the day I gave birth to you as you were the one that set me into labor 6 weeks early. You came out immediately kicking and screaming, and stayed that way your whole life.

I’ll never forget the day I brought you home from the hospital. We have video of that homecoming and the dog is jumping up trying to get you and then as I tried to lay you in your crib I bumped your head on the crib. I screamed at your dad to turn off the camera as I didn’t want everyone to know I hit your head on the crib the first day I had you home.

I’ll also never forget the morning I went in to get you and Jordan ready to go to daycare as I had to go to work. Forgive me for sharing this story Taylor, but it is such a great memory for me. You had pooped in your diaper and I guess you didn’t like it so you had taken it off and ran all over your crib. There was poop from one end of that crib to the other as well as all over you, yet you were so happy to see me you made those little noises of joy only little children do. Even when you were knee deep in poop, you were still happy.

I also remember one morning I went in to get you and Jordan ready to go to daycare and I couldn’t find you anywhere. I ran all over the house looking for you and couldn’t find you. You hear of those horror stories when someone comes into a house and takes a child so I thought that was what had happened. After I ran all over in a panic I came back to you and Jordan’s room only to find that you had left your toddler bed and you had crawled under Jordan’s bed and were sound asleep under her bed. That was one of the sweetest memories I have of you as a toddler.

You always loved Jordan so much you wanted to be close to her at all times. I also remember the time when Jordan was extremely sick with pneumonia. They were going to draw blood on her and you screamed, “Your hurting my sister” at the top of your lungs over and over again. We had three nurses in the room, not to calm Jordan down, but to calm you down. I had to call grandma to come get you so that I could get blood drawn on Jordan. I again realized how much you loved Jordan.

Taylor I also remember the time that the daycare did a special performance in an auditorium of about 300 parents. You and Jordan were chosen to recite lines in the performance and when you came up to the microphone you didn’t recite your lines, but you said “HI MOMMY”. It was such a great moment for me as you couldn’t see me, but you knew I was there.

My beautiful Taylor watching you battle cancer over the past three and a half years has been the hardest journey of my whole life, but I know it does not compare to your journey. Watching you suffer and experience losing so much of your childhood was heartbreaking. Through it all though, you continued to be happy and smile and live each day as it was your last. You did not allow cancer to control your life and lived as if you didn’t have cancer or were sick.

Many of you may or may not know that Taylor became unresponsive 5 days before she left for heaven. When we brought her home from the hospital on Thursday she was unresponsive. Friday morning I got in the shower and just cried as I thought I am never going to hear you say my name again or experience a hug from you. I prayed for God to give me strength to endure facing that reality. A few hours later you awoke and asked me what day it was. I told you it was Friday and you spoke…..you said OH NO! I said don’t worry your teacher isn’t coming over. You said Relay for Life is today and I want to go. I said lets just see how the day goes honey. I never thought we would make it to Relay for Life. You were in rare form on Friday and were giving everyone a hard time. Although your speech was slow, it was you. You gave everyone a hard time with your wit and I’ll never forget that you called one hospice nurse, fat and another stupid. You just had to know Taylor, to understand. Her responses had become more childlike, but yet it was Taylor.

Needless to say after much convincing we went to Relay for Life. She took her oxygen mask off for the first time in several days. The hospice nurses went with us, but she was talking and having a great time.

We did not time anything, it just happened. The moment we got on the track, they did the luminary ceremony, which is where they shut all the lights off and all the luminaries dedicated to people who experienced some realm in the cancer world. It was so moving to get there at that moment and see the word HOPE spelled out in candlelight on the stadium steps. Then someone sang Amazing Grace. I couldn’t believe how significant that moment was. You had Jordan and dad running around trying to find you a hot dog and you ate two hotdogs along with a churo.

Everyone gathered around you and stared at you in awe as if you had died and come back to life. It was a moment much like when Jesus died and came back to life. We made a lap around the track and as we did, more and more people gathered around you. People were absolutely astonished to see you, but that was our Taylor.

I realized how powerful God is and was in your life. He said, I’ll show everyone my glory through Taylor.

Saturday night you insisted on taking a shower. While it took several of us to get everything coordinated, you allowed Jordan and I to help you shower. You loved the warm water rushing over you as all the pains of the past three and a half years washed away.

We were cooking dinner and after your shower you said, I want to go to the table and sit next to Jordan. I said, ok I’ll wheel you over there. You said, no I’m going to walk over there. I said, no honey you can’t. You said yes, I’m going to walk and you got up and walked to the dinner table as the nurse helped you. You sat at the dinner table with everyone in your family as that was one of your favorite things to do. You could barely get a few bites down and were unable to hold you head up by yourself, but you put yourself at that table to have one last supper with us just as Jesus did when he left this earth.

Rob once said to me, you know Mary Kay she is the face of Jesus. I now truly understand and believe he was right. Although your physical body is no longer with us, your spirit is fully alive in heaven and earth.

Taylor, I know you loved the show Wicked. For those of you who don’t know it is the based on the Wizard of Oz, only from the witch’s point of view as she was misunderstood. I see you as Alfaba, the misunderstood one and Jordan as Galinda. Best friends until the end and although Galinda had to stay behind to continue her life on earth, Alfaba who was misunderstood, left the earth to Defy Gravity. We never understood why, it is just the way it was, but she was happy. At the Wicked show, you bought a necklace, which holds Galinda in her traveling bubble. As you forever wear that necklace around your precious neck, know that Jordan represents Galinda who is with you forever. Remember not everyone can travel in a bubble. I’m sure you defied gravity as your wings spread for your journey to heaven.

My beautiful Taylor you always defied all the odds and never gave up despite dire circumstances. You taught us to have more hope, faith, love and joy and I am honored to be your mother. My sweet angel Taylor, you have defied gravity and are flying with the angels. Fly my sweet baby girl, fly.

I will love you forever, Mommy

Friday, April 27, 2007 6:09 AM CDT

Our dear friends,

Our family so greatful for all the beautiful, touching entries everyone has shared. Taylor really had no idea how many people she touched worldwide and what an impact she made. Many of us spend our whole lives not knowing what our purpose was, but Taylor's was defined.

The past week has been full off a rollar coaster of emotions. One moment you feel "ok" and the next your a wreck. Cary and I were afraid of bringing Taylor home to spend her last few days as we were fearful how we would feel after her passing. The first two nights I slept in her room which gave me a great comfort. Jordan has been in there constantly as she always spent more time in Taylor's room than her own. Jordan slept in Taylor's bed last night as we have guests sleeping in Jordan's room. Jordan said to me last night, mommy I thought I would be scared to come into Taylor's room, but I'm not and I like being here. A friend who also lost a child said, her room is like a treasure now. I said, you are right, it is a beautiful room that we will treasure forever.

Jordan has been wonderful through all of this and going to school everyday. She said I was "allowed" to pull her out of school today after 5th block. Cary, Jordan and I will have a special time to spend with Taylor before other family members and guests arrive. We haven't seen Taylor since she left us on Sunday so it is going to be very hard seeing her tonight. At least that is how I feel now.

Yesterday a dragonfly got trapped in our screen. It was flying all over the place trying to break free. I chased it all over the lania until I caught it with the pool net. It held on tight to the net and then once I opened the door it flew away. Yesterday Cary and I went to the mall to see if I could find something Taylor would like me to wear for her. There was a butterfly some child had left in the parking lot right by our car. This morning I was looking for trashbags in a spot I never look in because the trashcan outside is different from the inside one. As I was looking a little book fell out titled Water Bugs & Dragonflies. It is a story about a waterbug that becomes a dragonfly and that now none of the waterbugs recognize the dragonfly so the dragonfly must fly to a different destination.

Taylor always loved butterflies and dragonfiles and she was a beautiful butterfly. Although I know Taylor's physical self is no longer on earth, her spirit will live in us forever.

I picked out this shirt at the mall to wear tonight at the viewing. It is totally not anything traditional, but Taylor wasn't either. I picked something I thought she would think was beautiful. It is not even something I would typically wear, but I asked her to guide me and that's what I ended up with.

About a month before she passed, she started talking, but her eyes were closed and she was not awake. She said, "Oh what a beautiful table" I said what does the table look like. She said it is lined in gold and it has turquoise trim. She described everything on the table, which were all her favorite foods. She described it so precisely and explained every detail. It was an amazing moment. In honor of Taylor's vision, I am wearing something that has a turquise necklace attached to the shirt. I know it sounds crazy, but it works.

Please continue to pray for our family as these next few days will be difficult. We cannot thank everyone enough for everything and for all everyone is doing here to help us.

Do not let your hearts be troubled. Trust in God, trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you.

John 14: 1-3


Please join us in celebrating our beautiful Angel Taylor's life.

Viewing is on Friday, April 27th from 6:00-8:00 p.m. at Serenity Meadows. The address is 6919 Providence Road in Riverview, FL 33569, 813-677-9494. To view her obituary, go to www.serenitymeadows.com.

We will have a private burial service on Saturday, April 28th for family at 10:00 a.m.

Taylor's Celebration Service will be at 11:00 a.m. at Grace Community United Methodist Church, 5708 Lithia Pinecrest Road in Lithia, Florida 33547.

If there is anyone who would like to speak at Taylor's service and share a happy moment or a fond memory, please know you will have an opportunity.

In lieu of flowers we are asking that donations be made to the Pediatric Cancer Foundation, specifically to the Sunshine Project in memory of Taylor. Their website is listed on the links below. (www.pcfusa.org) 813-269-0955.

We have also set up an education memorial fund in honor of Jordan.

Jordan C. Arrington
Education Memorial Fund
Amsouth Bank
16645 Fishhawk Boulevard
Lithia, FL 33547

Tuesday, April 24, 2007 2:03 AM CDT

Please join us in celebrating our beautiful Angel Taylor's life.

Viewing is on Friday, April 27th from 6:00-8:00 p.m. at Serenity Meadows. The address is 6919 Providence Road in Riverview, FL 33569, 813-677-9494

We will have a private burial service on Saturday, April 28th for family at 10:00 a.m.

Taylor's Celebration Service will be at 11:00 a.m. at Grace Community United Methodist Church, 5708 Lithia Pinecrest Road in Lithia, Florida 33547.

If there is anyone who would like to speak at Taylor's service and share a happy moment or a fond memory, please know you will have your chance. If you know us, you know how to reach us, so please do not hesitate.

In lieu of flowers we are asking that donations be made to the Pediatric Cancer Foundation, specifically to the Sunshine Project in memory of Taylor. Their website is listed on the links below. (www.pcfusa.org) 813-269-0955.

We have also set up an education memorial fund in honor of Jordan.

Jordan C. Arrington
Education Memorial Fund
Amsouth Bank
16645 Fishhawk Boulevard
Lithia, FL 33547

Taylor's service information will run in tomorrow's paper in the Tampa Tribune, St. Pete Times as well as the Tulsa World in Oklahoma if anyone wants to have a keepsake. You can also visit the serenity meadows website which will also have the obituary at http://www.serenitymeadows.com.

No black, brown, grey, dark blue or suits allowed....smile. Please dress happy, bright and casual.

For now we are all just hanging in there. Jordan is doing better than anyone I think. She has been amazing and uplifting to us all. She woke up yesterday singing beautifully and went to school. She told me Sunday night she wanted to go and I asked her, are you sure? She said, mommy what am I going to do at home?

I truly believe Taylor has embraced her soul with Jordan's and left a part of her in Jordan. Yesterday, Jordan made a sign when she got to school and hung it around her neck. It said,

"Yeah, I'm ok so do not....

* Ask me how I am
* Do not give me a hug
* Do not stare at me or my sign.

P.S. Only my "peeps" can hug me and ask me if I'm ok and stare at me and the sign.

Peep list is on my back....No one may touch the sign, not even my peeps...or I will smack you.

I asked her if someone suggested it to her and she said no I just did it. We were all laughing hysterically as well as everyone at school. That is not something Jordan would have ever done as she is usually shy and quiet. That is something Tayor would totally do and wanted to do the past three and a half years.

Jordan also tried out for a solo in chorus last Friday. She came home and told me that she was so scared and her voice cracked because she was so scared. I told her it didn't matter if she was chosen for the solo, but that just getting up there and singing in front of everyone took alot of courage and that was very brave and how proud I was of her.

Yesterday, she was one of 18, narrowed down from 100 kids. She had to sing again yesterday and she said she wasn't nervous at all and she asked Taylor to help her. She said she sang beautifully and she was one of six selected to sing a solo. Jordan was so happy, more happy than I have seen her in months.

I have so much to share with you about Taylor's last few days and I will. She said and did some amazing things the last few days of her life, even though when she came home from the hospital she was unresponsive basically. I believe she had a stroke last Wednesday when we thought we were going to loose her then. Despite this, God gave us a beautiful gift on Friday and she was in rare form despite how sick she was. I will share this in the next day or so, but for now I am going to try and sleep.

I also wanted to share Taylor's friend, Jacob's link as they battled cancer together on earth and now they are in heaven together. Jacob's mom shared some photos and stories about Taylor and Jacob. I can't link it here as I didn't do all the fancy things on her site so you will have to copy and paste the information. Taylor was a twin and Jacob was a triplet. It is unconceivable why one child gets cancer and one does not, especially when you have multiples. Taylor is going to be laid to rest next to Jacob as well as our friend Pat. Our three families' loved ones who all live in the same community and attend the same church have all lost their battles with cancer in less than a year, but will always be laid to rest together forever.

http://www.caringbridge.org/fl/jacob/

Thank you everyone for all your entries as we are trying to read them as we can.

God bless you all and thank you for being with us through this journey.

Cary, Mary Kay and Jordan

Sunday, April 22, 2007 1:27 PM CDT

My dear friends, I am so saddened to say that Taylor passed away this morning at 11:22 a.m. Our beautiful daughter is now with the Lord and she will no longer have to suffer or endure cancer. We will let everyone know the details of her service in the next few days.

Please pray for our beautiful, Angel Taylor. Please pray for God's love to surround our family.

Much love and heartfelt hugs, Mary Kay, Cary, and Jordan

Thursday, April 19, 2007 11:14 AM CDT

Hello everyone,

Taylor is in the hospital right now, but we will be coming home this afternoon by ambulance transport to remain at home. On Monday we came in to get labs done as Taylor awoke with a nose bleed Monday morning as well as being very out of breath. We found out as usual, that she needed blood and platelets, but she didn't want to stay at the hospital Monday afternoon so we left as we didn't have enough time to do both infusions anyway. Tuesday morning she actually beat me out of bed and was already dressed and ready to go to get her transfusions done as she knows it helps her feel better. We went in on Tuesday and she was fine until the platelets started going in. Her heart rate shot up and did not come down during the platelet or blood infusion. She is always premedicated for blood products and I have seen her have similar reactions to platelets before, but not like this one.

When the blood infusion was almost done she sat up and said she couldn't breathe. They gave her oxygen and she seemed ok for a moment. She then had to use the restroom and couldn't breathe very well again and asked for oxygen. She again seemed "ok". She wanted to go eat lunch and so we left as she always turns things around. We went to lunch and she ate some, and we went home. Later in the evening she became very labored in her breathing and I called the nurse to come out and he evaluated her and thought that the blood and platelet volume was too much and that it woud correct itself, but it didn't.

All night Monday night she could not get up for anything as even the oxygen was not helping that much. I didn't want to call an ambulance because the EMTs would have just shoved a tube down her and taken us to a hospital we didn't want to go to. We brought her into St. Joe's early a.m. yesterday, which was a little scary but we had our oxygen for her so she was ok. By the time we got here she seemed a little better and she was talking to Jordan and smiling.

They decided to give her some Albumin, which is a protein in the blood as it was extremely low due to her not being able to eat much. We were going to start TPN at home yesterday, but of course I had to cancel that appointment since we came in yesterday. Anyway, she was very sick yesterday to say the least. I cannot tell you how scary and just plain awful things got yesterday. The nurses were so wonderful and they never left our side all day. The doctor thought maybe her fluids shifted on Tuesday and all the blood went to the circulatory system and it was too much on her so the theory was to give her the albumin, then lasik to drain all the excess fluid off her lungs. She became very sick from all this yesterday and I thought we were going to loose her yesterday, but she is still hanging on.

She is pretty much unconscious, but she does respond to us sometimes. She cannot really talk, but she does squeeze our hand. I haven't slept since Monday and last night we brought up the aero bed like we always do so Jordan and I could sleep on it while dad slept on the other hospital bed in the room. We bought the aero bed when Taylor was first diagnosed and we have used that bed hundreds of times here and at home. Well for what ever reason it just started leaking last night as this big hole apparently developed. I was so tired and started crying uncontrollably as it just seemed so odd that we bought that bed at initial diagnosis and now last night for some strange reason it develops this hole and starts deflating for no reason. When I was crying I blew my nose and Taylor said, bless you. I couldn't really understand her very well, and I said bless you too. I then realized she thought I had sneezed and so she was saying, bless you. So she is hearing us.

We are supposed to come home late this afternoon and we will have Hospice care at home 24/7. It is very hard for me to allow them to be there 24/7, but I just want to be her mom and not her nurse so I can love her as I need to. It's just hard to let go of what little control I think I have left although I know it is necessary.

Several things happened prior to this all taking place and I knew this day was coming very soon. On Monday I had this sick feeling all day and felt panicked for what I thought was no reason. I guess it was really as Tuesday all this started happening. On Monday driving home, Taylor just looked at me and said "I Love You mama." On Sunday night, she grabbed me in the middle of the night and just gave me the biggest hug, so I knew this was coming as she hasn't done that alot in the past several months due to all the drugs in her system, which make her usually very irritable.

For now please pray for Taylor's comfort and peace. Pray for God to surround our family during this time.

Sunday, April 15, 2007 7:29 AM CDT

Taylor has had some ups and downs again this past week. She was really struggling on Wednesday up until about 4:00 pm and then she began to feel better and hang out with us in the living room and ate a pretty good meal for her anyway. On Thursday she woke up pretty early and felt pretty well most of the day. On Thursday night she was able to go to cooking class, which was wonderful. The photo is of the girls at cooking class. I was so happy to see her go as she enjoys it so much. Jordan went with her this week since she didn't have volleyball practice so that made her very happy.

Friday was pretty traumatic as we did the PICC line procedure. We did the procedure in the day hospital and I was able to stay in the room with the doctor and nurse to perform the procedure. They had an ultrasound machine to locate a vein in her arm, which they did and they marked the spot. When the doctor handed the nurse the ultrasound "wand" to start making an entry, the vein either shifted and/or collapsed. I was on one side and they were on the other and I could tell that they didn't get it in, but the doctor was trying to wiggle the needle around to try and get it into the vein. Needless to say Taylor was screaming at them the whole time and if she told that doctor once, she told him a thousand times that he didn't know what he was doing and it wasn't going to work.

Well then he decided to try the other arm, even though she now had a big hole in her right arm and she had already had lanocaine injected. I thought there is no way she is going to let him do the other arm. It was all I could do not to grab her and run out of there. At one point the doctor became pretty upset at Taylor and said, I went to medical school and you didn't so I do know what I'm doing. I'm thinking, ok buddy I'm going to jump over this bed and tackle you and I don't care if you went to medical school or not, this is a 12 year old child that you're trying to convince that you know what you are doing.....hello....? I told him she almost qualified to be a doctor based on everything she has been through and that she knows her body better than anyone else and told him I would tell her everything that was going on....in otherwords, be quiet as you're only upsetting her more.

After an hour of trying to get the PICC line in, they finally were able to get it in the left arm. She has a huge bruise on her right arm which looks pretty scary. I was so upset that we had to do this procedure, but now she will not have to have any finger pokes or IV's for anything. Now she can get blood products and lab draws, fluids, medications and TPN if necessary. I felt so horrible during the whole thing as I felt we were right back to three and a half years ago when we had to put her port in. It was the same sick feeling I had then. After it was all overwith, she was ok, so I was ok. She had to get fluids as she was dehydrated, but her platelets were steady and her hemoglobin was good.

Yesterday she wanted to go to the mall to look for some shoes. I was very excited that she wanted to go, so we had a great girl's day out as Jordan, one of her friends and grammy and I went shopping. She picked out some pretty cool sandels and really enjoyed herself. We were also able to eat lunch at the mall and Taylor ate a great lunch! Her appetite has been getting much better and she is eating better since being on the appetite stimulant medicine.

She is still struggling with her respiratory issues which seem to get a little more labored each day. I'm not sure what this week will bring as we are not doing any treatment right now. If she is doing ok tomorrow I may call Moffit again to see if we can come in. I'm just not sure she can tolerate any more treatment of any kind at this point. It is alot harder not to do any treatment than I thought it was going to be. I struggled with this issue and agonize over this daily as I feel I should be doing something more, but there just isn't anything more I can do other than love her and hold her hand through all this.

Through all of this Taylor has remained happy and smiling most of the time. She has been her witty self the past few days and just enjoying her days as much as possible. Last Sunday things were so bad and we were all so scared. She continues to amaze us and I have never seen someone fight and strive to remain happy despite everything she has lost. She has lost almost every physical aspect of life she once enjoyed, but she still remains happy, grateful and loving life. She has taught us so much about love, hope and faith and to never give up no matter how bad things seem.

Please continue to pray for Taylor's healing, pain relief and guidance for our family. I did check her P.O box this week and gave her all her cards and packages. She was so thrilled and I just want everyone to know how much she enjoyed opening all her mail this week.

Let love and faithfulness never leave you, bind them around your neck, write them on the tablet of your heart. Then you will win favor and a good name in the sight of God and man.

Trust in the Lord with all your heart and lean not on your own understanding. Proverbs 3: 3-5


Please join PCF in supporting the first annual Fashion For The Cure fashion show in ORLANDO to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, April 17, 2007 6:00-9:00 pm at Saks Fifth Avenue at the Florida Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Tuesday, April 10, 2007 8:38 AM CDT

Hello everyone,

I haven't updated as I don't really know how or what to say. We were unable to make our appointment at Moffit on Friday as Taylor was just not feeling good. Her condition has became increasingly worse since last Wednesday and we have been doing everything we can to keep her pain under control as well as spend quality time together.

She had a severe asthma attack on Sunday morning, but fortunately I had oxygen on hand to give to her until I could get her breathing treatment machine together and ready to use. That seemed to get everything under control for a few hours. However, Sunday she continued to struggle with her breathing and couldn't even sit up without being out of breath. She did not want to go to the hospital so we did the best we could to enjoy Easter and have dinner together.

We went to the hospital yesterday and she did need blood and fluids. This helped control her respirations slow down a little so she didn't have to work so hard. I took her off the molecular drug as one of the side affects is asthma attacks and difficulty breathing. It also causes severe tremors which was so bad Saturday night that she couldn't hold an egg to color for Easter. She seemed a little better by last night.

She did walk to the bathroom and living room yesterday by herself before we went to the hospital, which was a great improvement from Sunday. I guess taking her off the molecular drug was the right decision. Sometimes you just have to weigh the the benefits versus the side affects and in this case the side affects seemed to be too severe for her.

She is actually up this morning smiling and wants to go to the store to buy some food because we have none as she puts it.....our fridge and cabinets are about to explode from Easter, but if she wants to go, we'll go. Yea, she wants to eat and go to the store to buy food! They put her on Magase to stimulate her appetite, which seems to be slowly working. We are trying to avoid the feeding tube as for Taylor it would run through her nose and the tube would be visible on the outside of her face. We are trying to schedule the PICC line procedure again this week since she is needing blood products so much as well as she would be able to get TPN through the PICC line.

For now please just continue to pray for Taylor. Pray for her to be relieved from pain and pray for God's presence to surround our family. Thank you for all your prayers, love and support.

I took this picture of Taylor at Gatorland a few weeks ago feeding the birds. I love how the sun is shining through and what a beautiful, peaceful picture of her. I think this picture says alot about God's love. I also linked the photos PCF sent me of the fashion show below.

Let love and faithfulness never leave you, bind them around your neck, write them on the tablet of your heart. Then you will win favor and a good name in the sight of God and man.

Trust in the Lord with all your heart and lean not on your own understanding.

Proverbs 3: 3-5

Please join PCF in supporting the first annual Fashion For The Cure fashion show in ORLANDO to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, April 17, 2007 6:00-9:00 pm at Saks Fifth Avenue at the Florida Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Thursday, April 5, 2007 7:12 AM CDT

Just a quick update and request for prayer for Taylor. Although Taylor seemed to be feeling better over the weekend, she has steadily been experiencing more and more pain and difficulties. We went to the hospital Tuesday with the expectation of getting a feeding tube, but the lab lost her chemisty tube so we were unable to see what her protein levels were. We are going back today so I am pretty much expecting her getting the tube. While I know she needs it, my main concern is what it is going to do to her socially. She already told me she would not go anywhere if she gets the tube. Unfortunately, we may not have a choice as she had a very bad day yesterday and she didn't eat anything.

Yesterday she was in extensive pain all day despite us doubling her pain medication. Today when we go in hopefully we can get hydration, platelets and/or blood and maybe some nutrition.

I had a small glimmer of hope as I have been talking to a doctor at Moffitt who specializes in Sarcoma and thinks he may have something we haven't tried. They don't typically treat pediatrics which is why we haven't gone before, but he is willing to talk to us. We are supposed to go talk to him Friday, but I'm not sure Taylor will be up to making the appointment.

I added a photo of all of us at the fashion show last week ago. It is very humbling to see how things literally go from one extreme to another with this disease and everyday is an unknown. Live everyday to the fullest and enjoy everything around you. Hug and love your children like there is no tomorrow.

Please pray for Taylor and pray for pain relief and for God's grace and guidance in all things.

Please support PCF in finding a cure for this horrible, devastating disease so that no other child or mother will have to endure this heartwrenching journey.

Please join PCF in supporting the first annual Fashion For The Cure fashion show in ORLANDO to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, April 17, 2007 6:00-9:00 pm at Saks Fifth Avenue at the Florida Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Sunday, April 1, 2007 12:39 AM CDT

Taylor has been hanging in there. She has been very tired, but that is nothing new. I still haven't had time to download some more of the fashion show pictures, but will do so soon. I was going to create a slide show and hopefully I will be able to do that next week. I did link the makeover day photos on the links below to view. One of the sponsors is Mercedes Benz...in case your wondering why there are so many pictures of the cars for the makeover day. I promise it's not an add for Mercedes...smile. A driver comes and picks us up in one of their cars as part of the day of pampering prior to the fashion show.

I put a picture on the home page of Taylor and her friend Christina at the fashion show. It is a great picture and shows "the real Taylor" in her eyes. If anyone can bring that out in her, it is Christina.

Taylor has seemed to have some periods of time where she felt a little better over the past few days. She hasn't been able to go to school as we are pretty much doing homebound now as it is just too much for her. It seems to be working out well so far. She has a few classes, which are teleclasses so she has other kids on the phone at the same time which the teacher goes over the lesson, which is an hour per subject. At least that gives her some interaction with other kids.

We were going to do the PICC line last week, but Taylor decided she didn't want to go through the process due to having the line outside her body and hinder her more. We may have to have one put in soon even though we don't want to as she is struggling with hydration issues. She is also struggling with not eating and her protein levels are dangerously low. We had the dreaded talk of possibly having to insert a NG tube (feeding tube). I have tried to get her to eat more this weekend, but I don't think it is enough to bring her levels back up sufficiently. Unfortunately, since her port is working we can't use it for TPN (artificial nutrition) so a NG tube is the only alternative. I am dreading going in this week to find out what her levels are. She has been struggling with not eating for several weeks so I knew this was coming, but that doesn't make it any easier. I know she would hate a NG tube, who wouldn't.

Taylor started on a different molecular therapy last week. I had to really persuade the doctors to search resources to find a therapy she hasn't used. It is very hard to keep them searching for us, but we can't loose heart or hope or stop searching for the key to unlock the gates. She does seem to feel a little better over the past few days which is a huge improvement from Wednesday. She was really struggling Wednesday while we were at the hospital. She did go to her cooking class Thursday night, so I am always thrilled when she feels up to doing things.

We also went to the hockey game last night. I didn't think she would make it through the game, but she wanted to stay to the end....what a game! I missed Vinny Lacavalier's record setting 50th goal! I was running all over the Forum trying to get Taylor a Churo. I finally got it and she took one bite of it and said...it's cold mom. Ok honey.....smile. I missed the second goal too as I was running around getting peanuts for the girls. I was exhausted by the end of the night, but hung in there because if she was up to being there that's what counts. She was clapping and cheering, so she was doing much better than earlier in the week. Praises!

Please continue to pray for Taylor's complete healing on earth. Continue to pray for pain relief and that the molecular drug will stop the pathway of the cancer cells. Pray that her appetite will be stimulated and so we can get her protein levels up.

Pediatric Cancer Foundation is having their first annual Fashion for the Cure fashion show at Saks in Orlando on April 17th. They will have 8-10 girls from the Orlando area participating. Please see the PCF link below.

We lived in the Orlando area for a year and a half, so we are counting on all you Orlando people to come out and show your support as PCF branches into your area. If you view the slideshow, you will see what a difference this organization makes in the lives of all of the families. We need you to help make a difference in funding research and hope so we can decrease the 20 percent of children NOT experiencing a cure for pediatric cancer to 0 percent.

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, April 17, 2007 6:00-9:00 pm at Saks Fifth Avenue at the Florida Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Wednesday, March 28, 2007 7:44 PM CDT

Just a quick update to load a few pictures of the fashion show last night which was a huge success! The home page photo is of Taylor and Dave Andreychuk who is the former team captain of the Tampa Bay Lightning. I added a few other pictures on the photo link below and will add more later.

Taylor had a great time last night as well as all the 27 girls who participated. I heard so far they raised $165,000 last night as well as a crowd of 500 people! It was so wonderful to forget about all of our problems and difficulties for a night. It was also so wonderful to see all the moms dressed up as well as the daughters. All of us hospital moms usually dress pretty casual for our days at the hospital so it was great to see everyone all dolled up.

Usually the girls only get to wear the clothes and don't get to keep them, but last night someone generously offered to buy the girls their outfits they had picked out. They didn't get to keep the accessories though...darn! I already pictured myself wearing those Chanel sunglasses and Louis Vuitton purse and bracelet, with Taylor's permission of course.

Taylor had to get blood and platelets today so we were at the hospital all day. We are still struggling with alot of issues, but are trying to do our best to cope with everything. I will update more later when I have more time as well as add more pictures of the show.

For now thank you to everyone who donated and/or came to the show. Thank you for all your prayers and encouraging words. Although I don't have time to answer, we do read all the encouraging words and prayers sent our way.

Please continue to pray for Taylor's healing and pain relief.

Sunday, March 25, 2007 8:24 PM CDT

Taylor and Jordan had a great spring break. We stayed in town, but we tried to do something fun everyday. Last Monday we went to the hospital when we unexpectantly found out Taylor needed blood and platelets. We didn't have time to do both, so we had to go back Tuesday for blood and platelets. Taylor had to get an IV again, but she did really well as Jordan was able to come with us for moral support. We made the most of the day even though we spent most of it at the hospital.

We had a relaxing week and we were able to go to Gatorland on Friday. The weather has been beautiful this past week. Highs in the low to mid 80's, but we didn't have the humidity like we usually do. We enjoyed the day on Friday as we spent it outdoors with the alligators. We fed the alligators some juicy steak which was a little scary, but fun. I put the picture on the site of where we were feeding the alligators. They were like ok now, kneel here are we are going to take your picture. We were literally just a few feet away.

If you look closely at the picture, there is a line the guy drew in the dirt which is the "line of safety".....yea right. All he had was a stick like a broom stick to ward off the alligators. When I threw my steak, one of the pieces landed on another gator's back. I never was any good at softball....hahaha The gators get pretty mean over their food and go after it wherever it lands. I was a little nervous about having our backs to them for the picture. When we got the picture, I see this huge alligator tail directly behind us. I don't want to know where his head was. Luckily dad, Jordan, grammy, myself and Uncle Michael were able to escape without any injuries on Friday.

Yesterday we went to Wikki Wauki......I don't know how to spell it. It is a natural spring and it was absolutely beautiful. Taylor wasn't feeling very well yesterday, but she insisted we go so we went. It was so beautiful and peaceful there. They had a great mermaid show....yes a mermaid show. It was so neat as you are in an auditorium, but the ladies who are in mermaid suits swim in front of you as they are in the spring. It is like being in an upside down fishtank. They pose as graceful, effortless mermaids which was so neat. I know it sounds funny, but they did such a great job. I guess they train for a year to be able to perform all the things they do in the water. They don't use tanks or masks and only have this breathing tube on a wire that they breath from. At one point the senior mermaid dives 117 feet into the spring and then she comes back up. She held her breath for almost three minutes which was incredible to see. I just don't know how to describe it. I guess Nicole Richie and Paris Hilton were the most recent celebrities to go there and I guess they tried to swim like the mermaids did on their reality show; unsuccessfully of course.

I don't think I have ever seen such a beautiful natural spring and they had a large swimming area. It was like a water park only it was a natural spring. We didn't swim as the water stays at 74 degrees year round, which is a little cold right now for us. Friday and Saturday were very beautiful days and it just seemed so peaceful and calm. There were not too many tourists there so it was very relaxing.

Taylor has been struggling with a lot of pain lately, but we are doing everything we can to keep it under control. Her port is not working at all and they aren't going to put a new one in as her platelets are an issue as well as her lungs. She has a swollen lymph node that is pressing on the vein when her port line enters into the vein. So it is not going to work at this point. Her body is working very hard to fight off the cancer cells, so her lymphs are swollen. I'm not sure what we are going to do right now. We have talked about a PICC line, but I don't know if we are going to do that or not. We are leaving the decision up to Taylor as it would be another procedure she would have to endure and live with daily. She would not be able to swim or take a bath which would be another thing taken away from her. Right now we will have to use her veins which is very challenging.

Please continue to pray for Taylor's complete healing. She hasn't felt too great since yesterday, but she did insist on going to church this morning as well as getting her nails done for the fashion show on Tuesday. We really need your prayers more than you know. Things have been very difficult lately, but we know God is bigger than cancer and he is our refuge and hope.

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Sunday, March 18, 2007 7:19 AM CDT

Well we got through Thursday although it was a very long day. Taylor was so sweet as the nurses went straight to her veins rather than even trying the port. Taylor and I had prayed alot as she was so scared. I tried to find veins before we left the house and put numbing cream on them, but I couldn't find any veins that just popped out at me. The nurses had a very hard time finding any veins to try too. The first stick blew the vein which was quite upsetting, but Taylor handled it very well. They had to put in a bigger needle than normal because of the contrast and her veins are so small so it was difficult. Fortunately, they got it in on the second try.

Taylor was so sweet that none of us could believe it. She actually trusted her nurses and didn't scream or yell at them, which is the norm. She always cooperates, but she always puts up a fight. She told the nurses how scared she was and they tried to soothe her as much as they could.

Fortunately, we were able to get everything done that we had to get done and finished around 3:00. Taylor felt pretty bad after getting all the contrast and pain medication. Not a good mix in the tummy. We got home and she laid down for about 30 minutes. She started going to this cooking class a few weeks ago that is for kids. She loves to cook and wants to be a chief when she grows up. I didn't think we would be going to cooking class, but she perked up and wanted to go so we went. She was so excited to go that she almost jumped out of the car before I got it into park. As we were driving there, I watched her lean forward in her seat in anticipation. Something so small as this made me so happy to see her have something to look forward to.

Jordan started playing Volleyball this week which was also exciting as it has been hard to get her to want to participate in anything this year. I think she is afraid to leave Taylor and struggles being without her. Volleyball is at the same time as the cooking class so my mom took Jordan and I took Taylor. I thought this must be what it's like for most parents taking their kids to dance, soccer, etc. etc. I haven't had that opportunity or experience to feel what that is like as the girls haven't been able to commit to anything since Taylor's diagnosis 3 and a half years ago. I always worked before her diagnosis so it was so hard commit to very much before diagnosis too.

The girls are on spring break this week so hopefully Taylor will feel like doing some things. Remarkably we went bowling yesterday and everyone had a great time. Taylor struggled to throw the ball, but it didn't matter to her as long as she could participate she was happy.

Please continue to pray for Taylor's complete healing and continued pain relief. Pray for strength and guidance for our family in all things.

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Tuesday, March 13, 2007 11:57 AM CDT

Just a quick update today. Taylor's port still did not work yesterday. Our nurse tried so hard to get it to work, but to no avail. So unfortunately we have no other choice than to go into Taylor's veins to be able to do the CT and also a MRI on Thursday.

We were going to talk to a surgeon about taking out her port and putting a new one in, but they want to see the scans before we do anything so that is on hold too. I asked them about using Jordan's cells and that is still up in the air as All Children's is being hesitant to do the procedure it seems. I understand why as there are many factors involved in this. I am slowly weaning Taylor off the Prednisone, but am very nervous. Once she is off the Prednisone I am sure all her counts will drop drastically. I wouldn't be surprised if she would need platelets again on Thursday.

Last Friday morning I went with several other moms to sit in on the doctor's progress of clinical trials and drug combinations to help find a cure for sarcomas and rare brain tumors through sole funding of the Sunshine Project. It was very enouraging to see that they ARE making progress and have three clinical trials rolling out this summer and fall. However, it is very discouraging to hear our government is cutting the budget by 40 million dollars this year that goes to cancer research.

Clinical trials, FDA approval etc. etc. usually take many years to get going, so they have made great progress since November 2005. I was very honored to be apart of the meeting and thankful I took all those science classes so I could understand what they were talking about. We all did an interview on camera which will be sent out via satellite for media to pick up nationally or locally. We hope and pray it will get picked up nationally so we can further awareness of needed help to find cures for pediatric cancers and funding the the Sunshine Project.

(UPDATE) I just wanted to link the story that Fox 13 aired yesterday I guess. I had no idea they had picked up the story so I just found out about it. So it is on the links below.

I also got a P.O. box for Taylor listed below. Finally after three and a half years.

We are also very saddened to learn another child lost her battle to cancer yesterday. She was Taylor's age and was in the fashion show last year as well as playing the piano at last year's Breakfast of Hope for the Sunshine Project. During the breakfast and also the makeover day on Sunday, I thought about her so much and all the other young ladies who have lost their battles over the past three years.

This of course is another direct hit to my heart and we need to find cures faster as each day children are losing their lives.

Please continue to pray for Taylor's healing and that things will go smoothly on Thursday. It is going to be a very difficult day to say the least.

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Sunday, March 11, 2007 4:37 PM CDT

On Thursday we tried to get the CT done and unfortunately Taylor's port did not work. It was a very exhausting day to say the least. We got up at 5:30 to get to the hospital only to not have her port work. After three hours of trying to get it to work, we gave up. In addition the CT machine kept going down several times that day so I guess it wasn't meant for her to have it on Thursday. I wasn't willing to let them put a line in her hand either because the last time that happened they couldn't get the line in after sticking her twice in the hand so we canceled the CT and it is rescheduled for tomorrow. We were supposed to have radiation at 11:00, but they cancelled that too fifteen minutes before we were supposed to go.

I was originally told we could wait on the radiation a few weeks and it would still be effective and ok. Thursday I was told it wouldn't be effective and there was no sense in doing the last three days. At that point I was so frustrated and started crying as I feel so lost and defeated. Unfortunately, we had to stay in the area as they had scheduled a EKG and Echo at 2:00 so we couldn't go home.

I took Taylor to the mall and tried desperately to gain a smile from her. Nothing I did helped or mattered to her. She was very sad because we had to go back to the hospital. We did go back and the EKG and Echo got done thankfully. Once we left the hospital she felt very relieved.

Friday morning I went with several other moms to sit in on the doctor's progress of clinical trials and drug combinations to help find a cure for sarcomas and rare brain tumors through sole funding of the Sunshine Project. It was very enouraging to see that they ARE making progress and have three clinical trials rolling out this summer and fall. However, it is very discouraging to hear our government is cutting the budget by 40 million dollars this year that goes to cancer research.

Clinical trials, FDA approval etc. etc. usually take many years to get going, so they have made great progress since November 2005. I was very honored to be apart of the meeting and thankful I took all those science classes so I could understand what they were talking about. We all did an interview on camera which will be sent out via satellite for media to pick up nationally or locally. We hope and pray it will get picked up nationally so we can further awareness of needed help to find cures for pediatric cancers and funding the the Sunshine Project.

Friday night we were able to go to see Wicked which the girls loved. Today Taylor and I went to the makeover day at Saks as part of the fashion show on March 27th. Taylor wasn't feeling very good, but finally after after a few hours of being there she began to smile. She picked out her outfit for the show. The picture on the main page is of her trying on some Chanel sunglasses. She was able to spend a little time with Sydney, who lives in our area as well and she enjoyed that.

I added some more photos on the link below of the girls at Wicked and more makeover day photos. Taylor was so sweet in that she made a necklace on Friday to match Jordan's dress. It only took her an hour to make as she is getting pretty good at making necklaces.

Please pray that Taylor's port will work tomorrow. Pray for pain relief and continued healing for Taylor.

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Saturday, March 10, 2007 10:48 PM CST

Please continue to pray for Taylor's healing.

Wednesday, March 7, 2007 11:06 AM CST

Taylor has been doing a little better the past few days. Last week she really didn't get out of bed much at all and was really struggling. Friday night her heart rate got up to 177 bpm and her oxygen saturation was not too good so I gave her some oxygen which she hates. She hates it because she doesn't want to put that mask on her face.

After much thought and researching I decided to put her back on the steroids over the weekend. She had been off of them for about two weeks and things just rapidly went down hill. She wasn't herself at all and I felt as if a little more of Taylor was slipping away each day, meaning we really weren't seeing the Taylor we all know and love.

After just having two doses her heart rate was down to 133 on Saturday night and her oxygen saturation rate was back within a normal range. I know that steroids have adverse affects, but if you could give your child a pill to see a glimpse of them again, what would you do....

On Saturday we took her to the mall to cheer her up. We were just glad she was feeling up to going. The girls seemed to enjoy a day of shopping and I was just thrilled that both the girls picked out some clothes. Getting them to the mall is like pulling teeth. They hate to go shopping which is strange as most girls their age like to go, but they just don't. On Sunday Taylor had a good day and we were able to go to the zoo. She was in good spirits and said she was so happy to get out of the house this past weekend and she had a great weekend.

Monday we went to the hospital and Taylor had to have platelets. The doctor was ok with me giving her steroids. I have been making all the medical decisions for her anyway, but I felt funny about not running it by them first. She hadn't really eaten all week and she was barely walking without alot of pain and limping. Going on the steroids helps with the inflammation of the tissues and also stimulates her appetite. Monday she was an extremely emotional and crying alot due to having to get her port accessed, but she dealt with it. The last heart rate they took on her while she was getting her platelets was 117! I'll take that over 177 any time.

Well tomorrow we have a CT so please be praying for Taylor. I don't know when we will finish the last three days of radiation. Everyone wants us to finish, but hitting the areas they were radiating seemed to wipe out what little marrow she had left. The doctor said we may have to use Jordan's cells within the next few weeks if Taylor's marrow doesn't recover. I have been told that so many times I don't know if it will take place or not so I'm not worrying about it. The steroids will also help her counts, but if she goes off of them everything is going to drop to near zero again.

Please pray for continued healing, pain relief, slowed heart rate and regulated respiratory. All of that is taking place since putting Taylor on the steroids. I do believe that God gives us all nudges sometimes to do things, at least he has with me and maybe he gave me the nudge to think about the steroids. Whatever works!

I am going to get a P.O. box for cards to be sent to Taylor. I'll let everyone know the address once it is set up. Thank you for all the encouraging words for Taylor.

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Saturday, March 3, 2007 7:00 AM CST

This week has been a week of many ups and downs on the rollar coaster ride. Taylor felt slightly better after getting blood and platelets, but that didn't last long. She is very fatigued and sleeping alot, which is good because she needs to recover. She received another unit of blood on Thursday and she is also back on the dreaded GCSF shots as her white count was almost 0. She wasn't happy about that, but I explained that she didn't want to get a fever and without any white cells that was most likely what would happen. She is pretty mad at me for bringing it up to the doctor and told me to shushhhh and not tell them. I told her they were going to see it anyway.

I'm not sure how next week will go. The MRI of the spine was cancelled because we haven't been able to finish the last three days of radiation. Taylor is struggling with alot of things so I'm not sure if we will finish or not. We are still supposed to have a CT next week as well as an EKG and Echo. Her heart rate is still extremely elevated and her respiratory is still not too good either.

Taylor is struggling with pain here and there. I don't know if it is this or that as many things are going on. She is very sad and I think the most depressed I've seen her. I just can't fill the void for her that she is experiencing. She can't go to school so her world has been home and the hospital. She hasn't felt like going anywhere, but we are going to try and get her out this weekend if she is up to it. She did go to a birthday party last night, even though I wasn't sure if she would be ok, she wanted to go so I let her. It was at a good friend of ours who knows what is going on so I felt safe letting her go. It was nice for her to be around other girls and forget the world she has been living in for a few hours.

Please pray for Taylor. She is so sad and so lonely and isolated. I try everything I can to cheer her up, but I think she is pretty sick of mom. She wants her life back so much and wants to enjoy all the things a 12 year old girl should be enjoying. My heart aches for both of the girls as this journey has been so hard for both of them.

Taylor would love any phone calls or cards from some of her friends. Although I tell her all day long how much people care about her, she is just not feeling it. I understand how she feels as life is just not enjoyable for her and she is very tired of all of this.

Please pray for healing and strength for Taylor. Please pray for her spirits to lift and that she will have some moments of enjoying life. Please pray for the pain to subside, the heart rate to come down, and her respiratory to improve. I'm hoping that getting her white count back up will help as her lungs always get into trouble when it gets that low.

Taylor is still her loving, sweet self despite everything that is going on. Well most of the time, unless she is yelling at the doctors, nurses or me to leave her alone. We will take that fighting spirit anytime.

Thank you for all your love, prayers and support.

Don't for get the Fashion For The Cure show to benefit the Pediatric Cancer Foundation. I have linked the PCF events coming up on the links below. Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955 or tickets can be purchased at the door.

Tuesday, February 27, 2007 8:58 AM CST

Taylor had a very rough day yesterday. She was really struggling on Sunday with breathlessness. In addition, her mouth was full of sores all over her tongue and mouth. She couldn't eat anything other than ice cream all day. She tried to eat solid food and her mouth started bleeding since it was so torn up. I called the doctor and we both agreed to hold all the drugs she was taking until her counts were checked.

Yesterday Taylor awoke very out of breath and I had to carry her to the car to get her to the hospital as even walking was too much for her. Then once we got in the car her nose started bleeding heavily. I was giving her medication driving down the road to try and stop the bleeding. I prayed the whole way there that I could get to the hospital as soon as possible. Getting to the hospital from our house is very challenging, expecially with traffic. Praise God that it was a very smooth ride and we made it in about 45 minutes.

Her labs revealed she was in need of blood and platelets as well as her white count being very low. I asked to hold radiation yesterday which we did. She felt a little better once we got home, but her breathlessness continues so we are having oxygen delivered this morning.

Things were very scary yesterday, but praise God for our wonderful nurses and doctors. Right now everything is on hold and we have to let Taylor try and recover if that is possible. Everything was just too much for her to handle.

Please continue to pray for Taylor and continue to pray for guidance and direction and healing. I am really struggling with making decisions for her as no decision is right or wrong, but I feel I am not equipped to make all these decisions as it is just too much. That is where God comes in and I believe he will direct us.

Help me understand this, that the answer to my prayer for healing is based on your track record not mine Lord.

As the crowd of fears begins to speak to me with regard to my healing, help me to ignore what they say, and focus intently on your words, "Do not fear, ONLY BELIEVE". Mark 5:36

Taylor is also looking forward to the Pediatric Cancer Foundation fashion show coming up on March 27th at Saks. This year they are expanding to also have one at the Orlando Florida Mall on April 17. I have linked the PCF events coming up on the links below. The fashion shows are fantastic, like something you see on TV. They have professional models along with some sports celebrities. Although the real celebrities are the girls fighting cancer. I know if any of you can attend, or any of her friends can attend she would be thrilled.

The picture I have on the home page is from last year. She looks so beautiful and she was so happy that night.

Tuesday, March 27, 2007 6:00-9:00 pm at Saks Fifth Avenue at Westshore Mall. They close the store for the PCF exclusive event.

6:00 Cocktails, Silent Auction and Shopping
7:00 Fashion Funds for the Cure Runway Show

Advanced reservations can be made by calling 813-269-0955

Sunday, February 25, 2007 6:54 AM CST

Taylor is enjoying her weekend having a few days off from the hospital. I hesitate to say how she is doing as the moment I entered a journal entry on Thursday saying she was doing pretty well, she immediately experienced major abdominal cramping and was crying out in pain. It is as if the evil cancer monster is just waiting for us to experience a good moment to take it away. I know that sounds crazy, but we all know where evil comes from.

Yesterday, Taylor awoke with a nose bleed so we have had to start on medication to control bleeding again. Her throat is very sore as one of the areas she is receiving radiation to is in her cervical spine so it is destroying the tissue in her throat. The Tarceva she is on is causing her skin to have a bad rash and major dryness causing her itching and tightness. The VP-16, chemo, seems to be the most tolerated, but her counts are definately dropping fast. She is also in Celebrex as well, which she seems to be tolerating fine.

She did feel a little better after getting fluids on Friday and it did bring her heart rate down to around 125. She is very breathless though and was really struggling last night just walking short distances. I am thinking she will need blood and platelets in the next few days. If she isn't quite transfusion level tomorrow, I will ask if she can get blood because she does not tolerate her hemoglobin dropping lower that 9.0 and she was around that level on Thursday. I'm sure it hasn't gone up since then.

Taylor is still determined and enjoying her good moments. We went to her favorite restaurant last night, Jo-To's and she took a friend so that cheered her up. I love going there, but I hate how I feel once we leave. We eat the Yum-Yum sauce until our stomachs hurt.

Taylor is due for scans next week, meaning the week of the March 5th. Please be praying for improvement or stable results. We are supposed to go see Wicked on the 9th so I hope and pray she will be able to go. We saw it two years ago in NY and we didn't go last year when it came to Tampa and the girls talk about it all the time so we are going to try and go.

Taylor is also looking forward to the Pediatric Cancer Foundation fashion show coming up on March 27th at Saks. This year they are expanding to also have one at the Orlando Florida Mall on April 17. I have linked the PCF events coming up on the links below. The fashion shows are fantastic, like something you see on TV. They have professional models along with some sports celebrities. Although the real celebrities are the girls fighting cancer. I know if any of you can attend, or any of her friends can attend she would be thrilled.

The picture I have on the home page is from last year. She looks so beautiful and she was so happy that night.

Please continue to pray for healing, continued relief from pain, tolerance of the last three days of radiation and heart rate to be slowed. Pray for stable or improved results on the upcoming scans. Thank you for all your love, prayers and support.

Thursday, February 22, 2007 5:39 PM CST

Taylor has been hanging in there this week. I slowly took her off the steroids and she has been off them since Sunday. She is tolerating radiation pretty well although today she was very tired and emotional and did not want to go. I felt the same way.

Dad took her yesterday and when they came home they reported her heart rate was a little high....173 bpm. A little high.....I about had a cow, but it was too late in the day to do anything so I called the clinic this morning and had her seen today. Her heart rate was a little lower, but still very high. After talking to the doctor and speculating that she might be dehydrated and/or counts dropped we decided to check her labs again and give her fluids. Her labs confirmed that her counts dropped significantly since Monday due to going off the steroids, but not enough for a transfusion. I am guessing she will need platelets and/or blood next week since she is getting radiation everyday in addition to chemo again.

We have finished 6 of 10 days of radiation. Taylor is very, very tired and somewhat breathless. She is back on asthma medicine and that seems to help some. She is very weak and she is so very thin. All of these things scare me and I worry every minute of the day basically. It is so hard to watch your child go through all these things. I am so very tired, but I know she is much more tired than me so I have to keep her spirits up.

Tomorrow we go in for fluids and radiation and thankfully have a break over the weekend. Taylor has not had any pain, which is great, but she is struggling with her energy level.

Please continue to pray for Taylor's healing, continued pain relief, tolerance of the last 4 days of radiation and that the fluids will help bring her heart rate down.

Sunday, February 18, 2007 8:07 AM CST

Thursday and Friday of last week were really difficult days for Taylor. She was in alot of pain on Thursday when we went to the hospital. We thought we were just going to realign her for radiation as I had called three times to get the plan. Well they informed us that she was going to be realigned and we were going to do radiation on Thursday even though I was told we wouldn't start until tomorrow. Taylor was extremely emotional due to the pain and finding out that our expectations were not going to be as we were told.

We were waiting to see the doctor when radiation came over and told us we had to go now or miss our appointment. The empathy level has not been too good over there lately. So Taylor and I reluctantly left the clinic to go to radiation. She was crying and I was crying. I was not very strong at all on Thursday and could not keep it together. She did really well although it took and hour and a half to take all the pictures again and have the physiologist review everything again to get started. Taylor wanted to go ahead with the treatment so she could get some pain relief. She was very sick for the rest of the day and we were able to see the doctor after radiation.

They sent us home with a different pain relief prescription patch. Well that did not go well at all. The patch which is supposed to release a certain amount each hour was just too much for her. Needless to say it was not a pleasant experience. She was sick again on Friday until the time we had to leave for radiation. I took off the patch as it was just too much. Since she has had two days of radiation and we added another drug to inhibit blood vessel growth, she seemed much better yesterday. I am supposed to add the chemo drug tomorrow, but I'm afraid it might be too much at once. I talked to the doctors about it and they were ok waiting after we finish radiation as it will increase the toxicity level of the chemo drug. However, I am also afraid to not give it to her. These decisions are heart wrenching and difficult.

I watched the special on ABC news about the government cutting cancer research for pediatric cancers. They already cut the budget last year by 30 million and are going to continue to do so. Guess what type of clinical trial to be most affected was at the top of the list. Sarcomas.....then rare pediatric tumors coming in second. That just made me sick as those are the two categories that children are losing their lives over. We have known 20 children just from our hospital since we started that have lost their battle. I am sure there are more that we didn't meet or know about. I wish someone would do a reality show about pediatric cancer journeys rather than all these meaningless reality shows that aren't really reality at all. I'll be the first to sign up.

I added the abc news video link on the story on the links listed below.

Please continue to pray for our world to become aware of how much pediatric cancer is affecting people's lives. These children deserve so much more in life than to be sick and fighting for their lives everyday. I feel blessed to be a part of the Pediatric Cancer Foundation, which is a privately funded organization to raise money that directly goes to Pediatric Cancer Research. Again, they are well on their way to meeting their $5 million dollar goal in just over a year and a half since starting the Sunshine Project.

Please continue to pray for Taylor's healing, relief from pain, tolerance of all the treatments and guidance and strength for our family.

In confidence today, I will say to this mountain of sickness, be taken up and cast into the sea. I will NOT DOUBT, but BELIEVE that what the Lord has said, He will do. Knowing that as I have asked in prayer, believing, I shall receive it. Mark 11:23

Thursday, February 15, 2007 6:22 AM CST

We still have not started radiation as yet. I guess we have to go back today to realign Taylor which means more markings and more time on the table with the mask on. We are not looking forward to having the experience again that we had last week.

Taylor has been doing ok. Her energy level has been down and she has been having leg pain on and off during the week. We are staying on the steroids until we start radiation as I am afraid to take her off until we get started with radiation.

Thank you so much to our church who put a basket of love on our porch so people could come by all day and put valentines in it. Everyone tried to sneak their valentines in, but that loud Roxy dog of ours would bark like crazy, so we knew when someone was there. It was alot of fun for the girls and me too.

Please be praying for Taylor as we go today for the scans and alignment for radiation again. They are looking at radiating 4 fields so it is a little scary for me anyway. Please be praying for continued healing and relief from pain. Taylor has been tolerating the drug she has been on so far, but we start adding two more by next week in addition to starting radiation on Monday.

Thank you so much for all your prayers, love and support.

Tonight on ABC World News tonight with Charles Gibson airing tonight between 6:30 pm and 7:00 EST there is a story on budget cuts for childhood cancer research. Please check your local listings entitled, "Why would anyone want to take a step backwards in the fight against cancer?"

I am so glad the Pediatric Cancer Foundation is making great strides in finding a cure for pediatric sarcomas and all pediatric cancers. They raised over $300,000 last week that goes directly to pediatric cancer research and towards meeting their goal of $5 million for funding, clinical trials and research.

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Wednesday, February 14, 2007 7:15 AM CST

Happy Valentines Day

I have been reflecting on Valentines Day and realizing how much love, understanding and friendship are so important in our lives.

On our first Christmas of Taylor's diagnosis someone showed up at our door Christmas eve with a donation from Progressive. I didn't know anyone who worked there at the time and it was so amazing to me that someone who didn't know us would have a fundraiser for our family. I called to thank them a few weeks later and spoke to the team leader there who was Patrick. I had no idea he lived in our neighborhood and in fact lived right around the corner from us.

A year or so later I played bunco with some ladies from church. It was at Pat's house where I met his wife for the first time. I didn't even realize that I was at his house at the time as I had never met him. I realized then that they attended our church, but I didn't really know them.

A year or so later his wife, Rhonda brought us a meal. We began talking and I found out she was a realtor. We were looking for another house as we needed to move from a two story to a one story due to Taylor's difficulty climbing stairs. We had been looking for over a year and had just met with another realtor that weekend. I instantly felt comfortable with Rhonda and she became my realtor and friend. She brought us to the home we live in now. We would have never looked at this house had she not brought us here. We instantly knew when we walked in, we were home.

A few months later Rhonda called me crying and she believed that Pat had leukemia. I told her not to fret and stop reading all the information on the internet and not to try and diagnose him before the doctors had as it will throw you into the fear mode instantly. Unfortunately, she was right and I was wrong.

We were treating at the same hospital for a while as we were in the children's oncology floor and they were on the adult oncology floor. We were no longer meeting at church, social events or bunco, but at the hospital. I was there the first day Pat was about to receive his first chemo treatment. Talking to them on the other side, meaning the cancer world side, was so uncomfortable and odd. I walked out of the room knowing what a long and hard journey they were about to experience.

Pat continued to fight a long battle and sadly he passed away on Sunday.

I reflect often how God brought our paths together to cross even before either of us knew why. We will always remember him and his kindness to our family. We are so saddened to experience losing another friend to cancer.

Love your families, love your babies, love your friends. None of us ever think we will end up battling these horrible diseases. Please pray for this family as they face such difficult days ahead. Although we do not understand why this has happened, we do see that God put us together for a reason, to help each other through this journey on earth.

Sunday, February 11, 2007 6:21 PM CST

We had a pretty good weekend at Disney and enjoyed watching the girl's cousin perform in the national cheerleading competition. We could only take about an hour of watching as the music and screaming was pretty loud.

Taylor felt pretty good on Friday, but she was pretty tired yesterday and this evening. She had a few periods through the day yesterday when she would feel good, but she just didn't seem like herself. We didn't do a whole lot this weekend at Disney as we just took it easy which was actually nice. We only watched the extreme stunt show, did the muppet 3D show and ate a late lunch in addition to watching the cheerleaders. Taylor was very tired so we went back to the hotel. Dad went shopping with grandma and grandpa and the girls and I stayed in and ordered room service and a movie. The girls think that is just so great and they seemed more excited about that than anything. We were a little sad to leave the magic and return to our reality of hospital trips, radiation and chemo.

We attended the Breakfast of Hope on Thursday and it was a huge success. So far they have raised over $300,000 to go directly to Pediatric Cancer Research for the Sunshine Project.

Please pray for healing for Taylor and that she will be relieved from pain. Please pray for tolerance of radiation as I believe we will be starting this week.

Taylor may try to go to school some this week, but I am not sure. All she wants to do is be able to go to school and be normal. I know many kids read her website and I feel I need to address this sometimes. Many hurtful, unkind and thoughtless things are said at school in Taylor and Jordan's presense. While I understand kids are kids and they don't fully understand, if they are reading this website they need to understand.

Please parents help the kids understand. We are not just tabletalk. This is our daily lives that we open to you to raise awareness of pediatric cancer, share our struggles, fears, ups and downs, heartaches as well as joys, hope and faith.

Please try to imagine missing days, weeks and months of school and then walking into a classroom. Imagine trying to catch up and comprehend where the class is at. Imagine feeling different, isolated and alone because life has not stopped for others as it has stopped for you.

Imagine kids dropping the cancer word around you as if it is just a word that means nothing. Imagine not being able to dance, play sports, run and be a normal kid. Imagine being trapped in a world that you cannot escape from that is filled with chemo drugs, radiation, shots, endless scans and that you have no control what other people do to you. Imagine this has been your world for 3 and a half years.

Imagine noone talking to you at school, because they are afraid to reach out to you. Imagine people staring at you everyday because you look different in their mirror. Imagine all these things.

Imagine how you would feel if your brother or sister was going through this and kids said things about them in front of you as if your not there and it is meaningless. Imagine if it was your identical twin, an extension of you. How would you feel.

When you grow up, you will remember Taylor and her struggles, hopes and joys. You will remember her often, when you see another child or adult without hair or wearing a bandana. You will say, when I was in school there was this girl who had cancer. Will you remember how you interacted with her. Will you say, I wish I would have......

Don't be afraid of someone who looks different, has a disability or has an illness you don't understand. Just LOVE them and accept them as they are. They are just people; just like you and I who want to be loved and accepted as we all do. Although they look different on the outside they are the same on the inside. Some of us look ok on the outside, but really we are not ok on the inside. Imagine what our insides would reveal. Saying hi to someone or helping them feel loved would make such a difference in their lives. LOVE well, LOVE

Share lots of love and hugs on this Valentines Day.

Thursday, February 8, 2007 4:28 PM CST

Taylor's week has had some good and bad days this week. She was only able to go to school one day this week.....I think. She has had to continue to take pain medication and has been sick at her stomach alot. Probably because of all the different medications she has been on.

I went over the new protocol with the doctor on Monday and after I had the conversation, I was so terrified to give her the drugs that I was sick to my stomach. I had to sleep on it and pray on it. We really we don't have alot of choices right now so I had to trust she will be ok. I talked to another doctor the following day and felt a little less frightened. Every doctor has their own opinions about different drugs. I haven't really slept much this week worrying about starting the new drugs and radiation again.

We went to radiation yesterday and had an absolutely horrible experience. Since we have gone so much they usually let Taylor get away with not doing alot of standard things. Yesterday, was not one of them. First they told her she had to put a gown on....big mistake. Then they told her she would have to take off her bandana.....huge mistake, then they told her a man was going to be in the room while they were doing the markings on her.....ok I'm on the floor now. It was not a good day.

They had to scan the whole spine so that meant they had to make a mask for her head. That doesn't sound bad, but it was. Basiclally they take this plastic netting put it around her head, strap it to the table and then put warm stuff on it so it will conform to her face. It was like being mummified, which is the only way I can describe it. She was screaming so loud my mom heard her outside in the waiting room. They had to leave it on her for about a half hour while they ran her through the scanner. They had to put all the ink markings all over her little body again..... I tell you no child should have to endure this and no parent should have to watch this. She just feels so violated and so out of control and she is just so tired of enduring all this stuff.

I don't know what the plan is yet and/or if we are radiating again. We are still waiting to hear from radiation on that. After it was all over, we were all physically and emotinally exhausted. I had to make it up to her by taking her to the Cheesecake Factory. I would buy her all the cheesecake in the world if it will give her a moment of happiness and put a smile on her face.

We went to the Breakfast of Hope this morning for the Pediatric Cancer Foundation. There were about 500 people there and they had two check presentations totalling $60,000 each from two different major sponsors. That does not account for their goal of $140,000 from today's breakfast. I know they will make the goal as the stories that were shared by all the families were absoluletly wonderful. Many of the experiences shared are our experiences. Some of the things that were said, were exactly the same things we feel and see everyday. Taylor was able to go this morning and seemed to enjoy being there. Jordan didn't want to miss school so she didn't go. Grandma and Grandpa are here visiting too so there were able to go too. The Pediatric Cancer Foundation is one of the only organizations in the country to fund research for Pediatric Cancer and the project is called the Sunshine Project. See the PCF link below.

We are supposed to run off to Disney for the weekend to watch our niece who lives in Oklahoma perform at Disney in the National Cheerleading competition. We went last year and there were about 20,000 cheerleaders there. (Y E A H) The girls are looking forward to getting away as we haven't gone anywhere in a while other than the hospital.

Please continue to pray for Taylor's healing and that she will be able to tolerate the drugs ok. Please pray for continued pain relief and that she will be able to attend school some next week. Pray for guidance and tolerance of the radiation treatments.

Sunday, February 4, 2007 8:41 AM CST

Taylor has been doing a little better as it appears the steroids are definately helping with reducing the inflammation pressing on nerves as well as helping with her energy level. I think I need a round of them....smile. She was able to go to school again on Friday for first block, which is math. It is very important to her to go as they progress so fast, missing one day is really hard and she still refuses to let her illness keep her from learning.

We went to the hospital Friday to talk to the radiation oncologist. Taylor was not in a very good mood and was very uncooperative. The steroids and morphine combination are definately working her nerves. She told him she was not going to do radiation and there was nothing wrong with her and that she was ready to go. I don't blame her for feeling the way she does and was amused with her determination and tried to keep a straight face as her honesty is a little blunt sometimes. Anyway, they are supposed to review her scans and get back with us. At this point I have no idea if we will be going that route again.

I am still struggling with making a decision on what route to go for treatment. I have been pondering it, continuing to research and praying for guidance. Thursday night a drug popped into my head that we hadn't talked about and that was not on the list of drugs the doctor gave me to choose from. On Friday morning I called the doctor and before I asked about the drug, he brought it up. Those are the type of things that happen when spiritual intervention is going on. Friday afternoon I got the tenative list of drugs we agreed to, but am very nervous about it. She will be on a combination of 4 drugs, all of which are angiogenesis inhibitors, (keep blood vessels from constricting) or EGFR inhibitors (growth factor inhibitors) as well as a biological response modifier and finally the chemo drug that popped into my head. Chemo has not worked very well for her disease at this point, but the other drugs focus more on the "root" of the problem as well as the cancer cell itself.

The scary part is that we wouldn't start the chemo drug until day 15 which means we will go another two weeks without any chemo, only the other drugs mentioned. While I know chemo hasn't worked too well, it is also scary for her not to get a chemo drug. Then I remembered sure and certainty and that God would not have sent me that little message and then get the same message on the other end of the phone if he wasn't guiding our path.

Taylor was able to go to the hockey game last night with her dad, which thrilled him and her. Apparently the camera went on them and they were on the jumbo tron as dad was rocking out to AC-DC when it was playing during the game. Because they were seen on the jumbo tron, they were invited to go sit in Brad Richard's suite where some of our friends were and had a great time.

Please continue to pray for guidance and healing for Taylor. Continue to pray for pain relief and a better week.

Two words describe faith: sure and certain. These two qualities need a secure beginning and ending point. The beginning point of faith is believing in God's character; he is who he says. The end point is believing in God's promises; he will do what he says. When we believe that God will fulfill his promises even though we don't see those promises materilizing yet, we demonstrate true faith.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Breakfast of Hope

The Pediatric Cancer Foundation invites you to join us at the 2nd Annual Breakfast of Hope. The morning of February 8, 2007 promises to be an inspirational one, filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure. Hosted at the Tampa Marriott Waterside, the Breakfast of Hope will be held from 7:30am - 9:00am on February 8th in Salon C & D of the Hotel.

The Rawson Family, which is presenting the Breakfast of Hope, will be joined by the Storch Family, the Family Chairs for the event, as well as Heather Duckworth, Sherry Tucker and Holly Wirth in sharing their touching journeys. See the Breakfast of Hope Invitation on links below.

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Thursday, February 1, 2007 4:15 PM CST

Taylor had the brain MRI done yesterday. She was in alot of pain Monday, Tuesday and yesterday. She was having alot of trouble walking as well as moving her neck. Things have been very scary and reality has been more than we can take this week.

Talked to the doctor and asked for steroids for her again to help with swelling pressing on nerves that have seemed to be causing her a great deal of pain. Taylor actually brought it up last Friday, but they said no because we didn't have the scans in yet. We asked for them again yesterday and they allowed her to go back on them. Four hours after taking one steroid pill, she felt a lot better and was more herself. We prayed together last night and one of the things she prayed for was to be able to go back to school. Although I wasn't sure how I was going to explain to her that she might not be able to due to pain and many other factors, we prayed for it anyway. She told me last night that she wanted to go to school today, and I told her ok. She actually went to school today for the first block. I offered to use the wheelchair to get her to class and she wouldn't do it. She walked to class by herself, although it was very difficult for her and me, I let her have that opportunity. She was limping pretty significantly this morning, but it has decreased quite a bit. She is still on pain medication, but she was very determined today. The steroids effects are amazing. It is literally like flipping a switch. We only have them for 10 days, so it is a band-aid for now.

The scans were pretty much what we expected. We are dealing with the same issues again, that we dealt with a few months ago. We are meeting with radiation again tomorrow, but the doctors have no idea if they will be able to do anything.

Basically I was given a list of drugs that we haven't used and I am supposed to decide if we want to stop therapy, continue therapy with little side affect risk, that may not be very effective or continue therapy with something that has more side affects and may or may not be more effective. Basically, we have no idea what the combination would be and neither do the doctors We are only to decide what level of toxicity we want to go with.

I researched all the drugs and listed all the pros and cons. Many of them I was familiar with, many of them I was not. Some work in one way, some in another. None of them are for Ewing's or approved for children. Basically it is like having a pair of dice in your hands and throwing them and seeing what numbers come up, to tell you how many spaces to move.

I have no idea how to possibly make this decision as I'm not a doctor, but I am a mother. The doctors will only write a plan depending on what level of risk we want to take. It is very hard, because there are many other factors involved, such as is it inpatient, outpatient, how many days, how is it administered, etc. which are all things to consider.

I talked to Taylor to try and get her feelings about things, but she told me today she was not having any pain so what is the big deal. Ok, I love for her to come back so fiesty and determined. So, I can only take the list of drugs and pray about them and lay them in God's hands. I am listening for that tiny voice inside to somehow direct us the way we need to go. The doctor told me it is like being in a totally dark room and you have no idea when you walk forward if you are going to fall in a hole or be walking on solid ground. That's where we are at now. I am praying for that flicker of light in the darkness, but I need your help. Please pray for guidance and what path to take for Taylor's treatment. Continue praying for healing for Taylor. If you would have seen her yesterday and you would have seen her today, you wouldn't have believed the difference.

I doubted Taylor's prayers to be able to go to school today. How could I possibly doubt such a great and powerful God.

Trust in the Lord with all your heart and lean not on your own understanding: in all your ways acknowledge him and he will make your paths straight. Proverbs 3:5

Two words describe faith: sure and certain. These two qualities need a secure beginning and ending point. The beginning point of faith is believing in God's character; he is who he says. The end point is believing in God's promises; he will do what he says. When we believe that God will fulfill his promises even though we don't see those promises materilizing yet, we demonstrate true faith.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Breakfast of Hope

The Pediatric Cancer Foundation invites you to join us at the 2nd Annual Breakfast of Hope. The morning of February 8, 2007 promises to be an inspirational one, filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure. Hosted at the Tampa Marriott Waterside, the Breakfast of Hope will be held from 7:30am - 9:00am on February 8th in Salon C & D of the Hotel.

The Rawson Family, which is presenting the Breakfast of Hope, will be joined by the Storch Family, the Family Chairs for the event, as well as Heather Duckworth, Sherry Tucker and Holly Wirth in sharing their touching journeys. See the Breakfast of Hope Invitation on links below.

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Tuesday, January 30, 2007 8:31 AM CST

After a long day yesterday we were able to get the MRI of the spine done. They were going to add on the brain MRI as expected, but we couldn't do it because it has to be with and without contrast. Since she had the contrast for the spine, we have to wait until tomorrow. Taylor did a little better yesterday and was able to get some fluids which seemed to help a little. Unfortunately, she woke up in pain the morning so we are trying to keep it under control.

Please continue praying for Taylor's pain to subside, healing and guidance.


Two words describe faith: sure and certain. These two qualities need a secure beginning and ending point. The beginning point of faith is believing in God's character; he is who he says. The end point is believing in God's promises; he will do what he says. When we believe that God will fulfill his promises even though we don't see those promises materilizing yet, we demonstrate true faith.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Breakfast of Hope

The Pediatric Cancer Foundation invites you to join us at the 2nd Annual Breakfast of Hope. The morning of February 8, 2007 promises to be an inspirational one, filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure. Hosted at the Tampa Marriott Waterside, the Breakfast of Hope will be held from 7:30am - 9:00am on February 8th in Salon C & D of the Hotel.

The Rawson Family, which is presenting the Breakfast of Hope, will be joined by the Storch Family, the Family Chairs for the event, as well as Heather Duckworth, Sherry Tucker and Holly Wirth in sharing their touching journeys.

In addition to the very special presentations by these families, both Mercedes-Benz USA and the Ironman Foundation will be presenting the Pediatric Cancer Foundation with significant donations to help in the mission to find a cure for childhood cancer.

Several levels of participation are available for the Breakfast of Hope. Tables of 10 begin at $500. An individual entry is $50 and a Patron of Hope entry is $75. Tickets can be purchased by calling the Pediatric Cancer Foundation at 813.269.0955. Click the PCF breakfast invitation link below for more information! The Breakfast of Hope is the start of a better day!

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Sunday, January 28, 2007 6:15 PM CST

Taylor has experienced the good, the bad and the ugly this weekend. She woke up yesterday with a horrible headache and got sick several times. She was better by late afternoon and enjoyed the rest of the evening and seemed so much better. Today she got sick on the way to church, but still wanted to go to church today. She was ok most of the day until this evening when she became sick again. I am very worried about her headaches and the vomiting. I don't know if it is from the morphine or the fact that they increased the potassium pills to three times a day. All of this can cause nausea, but I am particularly concerned about the bad headaches. My worst fear is tumor compressing the cerebral spinal fluid flow and causing pressure in the brain to accumulate. No fevers this weekend, just headaches and nausea.

Please keep us in your prayers as they will probably want to add on an MRI of the brain along with the spine. I will ask them to give her fluids tomorrow so maybe that will help too. Please continue to pray for healing, relief from pain, the nausea to subside and that my fears are just False Events That Appear Real and not the reality.

Two words describe faith: sure and certain. These two qualities need a secure beginning and ending point. The beginning point of faith is believing in God's character; he is who he says. The end point is believing in God's promises; he will do what he says. When we believe that God will fulfill his promises even though we don't see those promises materilizing yet, we demonstrate true faith.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1


Breakfast of Hope

The Pediatric Cancer Foundation invites you to join us at the 2nd Annual Breakfast of Hope. The morning of February 8, 2007 promises to be an inspirational one, filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure. Hosted at the Tampa Marriott Waterside, the Breakfast of Hope will be held from 7:30am - 9:00am on February 8th in Salon C & D of the Hotel.

The Rawson Family, which is presenting the Breakfast of Hope, will be joined by the Storch Family, the Family Chairs for the event, as well as Heather Duckworth, Sherry Tucker and Holly Wirth in sharing their touching journeys.

In addition to the very special presentations by these families, both Mercedes-Benz USA and the Ironman Foundation will be presenting the Pediatric Cancer Foundation with significant donations to help in the mission to find a cure for childhood cancer.

Several levels of participation are available for the Breakfast of Hope. Tables of 10 begin at $500. An individual entry is $50 and a Patron of Hope entry is $75. Tickets can be purchased by calling the Pediatric Cancer Foundation at 813.269.0955. Click the PCF breakfast invitation link below for more information! The Breakfast of Hope is the start of a better day!

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Saturday, January 27, 2007 6:29 AM CST

Just wanted everyone to know that we got through yesterday ok. We were able to get the CT done at the hospital. It went a little smoother. I had them hand inject the contrast into her port rather than use the machine. That took a long time, but it all went in without a problem.

It's hard to believe a week ago everything was ok and we were in a parade. Sometimes I still wake up and can't believe this is all happening. We just don't know what tomorrow will bring so enjoy everyday.

Taylor was feeling a little better yesterday as we are able to keep her pain under control. I don't know what today will bring, but please keep praying for healing, pain relief for Taylor and guidance. Monday we will have the MRI which will be another long day for Taylor. Thank you for all your prayers, love and support. I truly believe prayers from all of you make a difference and God does too.

Two words describe faith: sure and certain. These two qualities need a secure beginning and ending point. The beginning point of faith is believing in God's character; he is who he says. The end point is believing in God's promises; he will do what he says. When we believe that God will fulfill his promises even though we don't see those promises materilizing yet, we demonstrate true faith.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1


Breakfast of Hope

The Pediatric Cancer Foundation invites you to join us at the 2nd Annual Breakfast of Hope. The morning of February 8, 2007 promises to be an inspirational one, filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure. Hosted at the Tampa Marriott Waterside, the Breakfast of Hope will be held from 7:30am - 9:00am on February 8th in Salon C & D of the Hotel.

The Rawson Family, which is presenting the Breakfast of Hope, will be joined by the Storch Family, the Family Chairs for the event, as well as Heather Duckworth, Sherry Tucker and Holly Wirth in sharing their touching journeys.

In addition to the very special presentations by these families, both Mercedes-Benz USA and the Ironman Foundation will be presenting the Pediatric Cancer Foundation with significant donations to help in the mission to find a cure for childhood cancer.

Several levels of participation are available for the Breakfast of Hope. Tables of 10 begin at $500. An individual entry is $50 and a Patron of Hope entry is $75. Tickets can be purchased by calling the Pediatric Cancer Foundation at 813.269.0955. Click the PCF breakfast invitation link below for more information! The Breakfast of Hope is the start of a better day!

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Friday, January 26, 2007 5:42 AM CST

Yesterday was a very rough day. After rushing to the hospital to get Taylor accessed for immediate scans, we didn't get them done. Taylor got accessed and then we had to go to an offsite diagnostic center because they couldn't get her in at the hospital. We went there which is about an hour and a half from where we live. After waiting there for three hours to get a CT and an MRI things did not go so well. The people there were totally unfamiliar with handling a port. They were very uncomfortable and were not sure how to inject the contrast that goes in during the CT procedure.

Poor Taylor had been NPO for three hours prior to the three hours we had to wait so she was starving. She had also already drank the yucky contrast for the CT so her tummy wasn't feeling too good. We started the CT and it was ok until they tried to inject the contrast in which started squirting out everywhere all over Taylor. The pressure from the machine and/or her port caused the port to clot. They had no idea what to do at that point. I actually tried to flush her port, but it was not going in and we were not getting blood return. I then tried to push in some heparin, but it wouldn't go in either. God Bless the wonderful nurses at the hospital as they had sent the heparin with me because they weren't sure the facility would have any which they didn't. Looooong story short we had to go back to the hospital to have the nurses work on her port and bless them they got it to work after two of them worked with it for a long time. We have to go back to the hospital again today to try and get the CT done. That means Taylor has to drink another round of contrast and go through all this again. We can't get the MRI done until Monday as it will take 2-3 hours.

Taylor is extremely scared, frustrated and full of anxiety. She had a bad night last night and was up four different times walking in her sleep with night terrors. Basically she is walking all over the house hysterical and saying things that do not make sense. Some of the things she said were heartbreaking, meaning, I know she is so very scared. I do everything I can to comfort her and let her know she is loved and that God also loves her. It is hard for her to conceive everything that is going on.

Please pray for today to go better for Taylor. Pray for relief of the pain she is experiencing. Pray for healing and guidance in the next few days.

The Pediatric Cancer Foundation is having a Breakfast of Hope on February 8th. There are many mom's speaking this year that many of you know and are a great inspiration. Please see the PCF Breakfast of Hope Invitation link below for more information. They are one of the only organizations in the country who are funding a research project to find a cure for pediatric sarcomas called the Sunshine Project.

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Breakfast of Hope, February 8, 2007

Marriott Waterside Hotel 7:30am - 9:00am
Please join the Pediatric Cancer Foundation for an inspirational morning filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure.

Tuesday, January 23, 2007 6:17 PM CST

UPDATE FOR Thursday January 25:

PRAYERS NEEDED!!

We are getting ready to leave to get scans done today. Taylor is still dealing with pain and she is limping significantly now. Please pray for strength and guidance is this is going to be a very rough day for all of us. Just knowing you are praying for us means so much.

Taylor has been struggling the past few days. It seems just when we think things are getting better we are faced with days of worry, heartache and concern. Taylor's legs started hurting a little on Saturday as I had mentioned. She didn't do any walking to the parade or during the parade as we were taken directly to the car so I can't attribute it to the Gasparilla Parade. Her legs felt like jello on Sunday as she described it. Yesterday, she didn't go to school as her left leg was hurting as well as having a bad headache. We went to the clinic to check her labs, which were all about average for Taylor so we can't attribute anything to low platelets or hemoglobin.

Her chest was hurting last night and I had hoped it was from throwing beads at the parade. Today, she only went to school to take a test and came home as her neck was hurting and she didn't have any range of motion in her neck either. As the day went on, I had to give her some morphine for the pain which helped her a little, but has not worked as well as it usually does. We are supposed to do scans next week, but if the pain does not get any better I know I'll have to take her back in and they will probably want to do scans before Monday. I know in order to get that done, we could possibly be admitted just to get it done as they have to scan you if your are inpatient.

I am asking for prayers for Taylor to feel better and for healing for her. I am so very, very tired as it is so hard watching this day after day. It is a huge emotional strain which I can't get through without God's help. As a mother I just don't know what to do to help Taylor other than continue to be there for her and pray for her as well as ask for prayer from all of you. Please pray for grace, guidance and healing.

I added a photo album of the parade on the link below that reads Kodak gallery....etc.

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Breakfast of Hope, February 8, 2007

Marriott Waterside Hotel 7:30am - 9:00am
Please join the Pediatric Cancer Foundation for an inspirational morning filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure.

Sunday, January 21, 2007 7:38 AM CST

We had a great time yesterday at the Gasparilla Parade. It was a beautiful day and both the girls had a great time riding in the convertible during the parade route. It was alot of fun being in the parade. It is so funny how people yell and scream for beads. I have usually been on the other side of the barricade so it was great fun to be throwing the beads rather than trying to catch them. I was thinking wouldn't it be great if people responded to you everyday with cheering and smiles. My feet are killing me today as all of the adults walked. I am not used to wearing anything other than flip flops or tennis shoes so by the time the parade was over I could barely walk. I had boots on. I think it was the first time sinced we moved to Florida that I have worn boots. The route is 1.5 miles, but we had to walk a long way before it began as well as at the end. It was so worth it though. I see a pedicure in the near future mainly to scrape all the blisters off....hahaha

Taylor has been doing pretty well. She was pretty worn out by the end of the week as she went to school everyday for most of the day. She was limping a little yesterday which always freaks me out. She said her legs felt stiff and that is why she appears to be limping. This week we should only have labs at the hospital. I am already fighting fear because of next weeks scans. I try to replace faith with fear, but sometimes it is overwhelming. Please continue to pray for Taylor's healing and for great results to come next week.

I added a few pictures on the photo link below of the girls yesterday.

The Pediatric Cancer Foundation is having a Breakfast of Hope on February 8th. There are many mom's speaking this year that many of you know and are a great inspiration. Please see the PCF Breakfast of Hope Invitation link below for more information. They are one of the only organizations in the country who are funding a research project to find a cure for pediatric sarcomas called the Sunshine Project.

DID YOU KNOW.....?

*46 children are diagnosed with cancer each day.
*2500 children die each year from cancer.
*That it has been over 20 years since the last drug was approved for childhood cancer? Most kids are treated with adult protocols!
*That the survival rate for many types of childhood cancer is less than 25 percent. Great progress has been made for leukemia - but not much else!
*Only 3 percent of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.

Breakfast of Hope, February 8, 2007

Marriott Waterside Hotel 7:30am - 9:00am
Please join the Pediatric Cancer Foundation for an inspirational morning filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure.

Tuesday, January 16, 2007 10:25 AM CST

We are so glad we have finished another round of chemo and antibodies! We won't have to go to the hospital for the rest of the week. I am so excited I don't have to make that drive everyday for the rest of the week. Taylor is doing pretty well. The chemo causes major abdominal cramping and the antibodies cause her to have a rash on her face so we are fighting that. I found some serum that is supposed to help cancer patients on the antibody treatment Taylor is on so hopefully that will help.

I asked the doctors about giving Taylor some growth hormones, but I already knew the answer to that question, which was no. I guess it would be an antigonist since she has disease present, but it was worth a try.

After chemo on Saturday we went to get fitted for corsettes to be in the Gasparilla parade on Saturday. I was surprised the girls wanted to wear one, but they did so we all tried them on. We put them on backwards and upside down, which was pretty funny. We all found one we like and it sounds like we are going to be riding with a pretty fun Krewe.

The whether looks like it is going to be nice for Saturday, meaning not too hot. It is hard to believe that most of the country is having snow and ice as it has been 80 degrees here everyday. It is going to only be 65 on Saturday, but I am happy about that since we will be wearing pirate boots and hats, etc. The sun also aggrevates Taylor's rash so hopefully we will have a little cloud coverage too. The girls are riding in a convertible rather than a float which is much better. A few years ago we participated and we were hit in the head with beads a thousand times by other kids. It is alot harder and farther to get those beads to the crowd than it looks. Those kids would throw those beads with all their might only to hit you in the back of the head.....yes it was fun.

We have scans coming up again the week of the 29th, so please be praying for a great response. Taylor is really doing great considering how bad things had progressed from October to early December. She is not limping or having any pains anywhere. Her eyes look bright and sparkling blue. When her disease was progressing a few months ago, her eyes did not look good as well as some neurological things going on. That has all resolved which is wonderful. Please continue to pray for healing for Taylor.

The Pediatric Cancer Foundation is having a Breakfast of Hope on February 8th. There are many mom's speaking this year that many of you know and are a great inspiration. Please see the PCF Breakfast of Hope Invitation link below for more information. They are one of the only organizations in the country who are funding a research project to find a cure for pediatric sarcomas called the Sunshine Project.

Breakfast of Hope, February 8, 2007

Marriott Waterside Hotel 7:30am - 9:00am
Please join the Pediatric Cancer Foundation for an inspirational morning filled with hope and love as families share their personal stories of battling childhood cancer and the importance of finding a cure.

Friday, January 12, 2007 10:50 AM CST

Well here we are at the hospital again as we are on day 13 of the 15 day cycle. Taylor has had several nose bleeds this week although her platelets are 47,000 which is good for her. She felt pretty bad last night due to the chemo. She was only able to have a one day break over the weekend rather than 2 days. Since we started the week of New Year's we had to make up the day over the weekend. She is feeling pretty good this morning so far. We are waiting for her to get her chemo today. Today is not supposed to be a clinic day, but every bed is full today as well as last Friday.

Things have been very hectic having to come everyday, but hopefully we will have most of next week off which will be nice. It's such an odd feeling to still be treating as we are working on four years now. We see people come and go through treatment. We watch new families come in everyday which is sad and overwhelming at times. How many kids have to be diagnosed before we find a cure. Sometimes I think Lord why does Taylor have to have such a difficult form of cancer to fight that we are still living in the cancer world.

I think this year has been the hardest for Taylor as all the girls are developing into young ladies and she isn't due to chemotherapy. It is hard to see her sister go through all this too and she is not. She has been struggling with that alot this week. She wants hair so bad and she is tired of wearing a wig everyday. I wish so much I could make it less painful for her emotionally and physically.

I do my best to console her and keep her spirits up, but it breaks my heart to see her suffer so much. I want the girls to have the life they deserve to have and cancer has kept them from these things. We have done many wonderful things and met so many wonderful people, but we are so tired of living with cancer. I would give anything for Taylor to be cured.

We do have alot of praises and I know that Taylor is a miracle. I am just weary today. Taylor's port has been working which is a praise and a miracle. Taylor has been able to go to school some this week, which is an even greater miracle.

I added another great picture of the girls at the beach taken over the holidays. You can barely make out the alligator, turtle and sting ray someone made on the beach that day in the sand.

Please continue to pray for Taylor's complete healing. We have chemo tomorrow and antibodies on Monday. Please pray for another little girl who is only 4 years old diagnosed with neuroblastoma in our community.

The Pediatric Cancer Foundation is having a Breakfast of Hope on February 8th. There are many mom's speaking this year that many of you know and are a great inspiration. Please see the PCF link below for more information. They are one of the only organizations in the country who are funding a research project to find a cure for pediatric sarcomas called the Sunshine Project.

We have to find a cure today for tomorrow's children. Pediatric cancer is the number one cause of death in children. Unless you have been exposed to the cancer world through personal experience, it is an unknown statistic to most of the world. Approximately 13,000 children will be diagnosed this year. You can copy and paste the information below to see information on the Sunshine Project or click on the PCF link below under links.

http://www.pcfusa.org/sunshine_media.htm

Wednesday, January 10, 2007 6:57 PM CST

Just a quick update to let everyone know that Taylor's port has been working great since last week's port issues. They accessed both sides on Monday and as expected the lateral side would not do anything. Fortunately, the medial side is working beautifully and we have not had any issues this week with chemo. Taylor was able to go to school most of the day yesterday and today. We still have to go in Thurs, Fri., Sat. and Monday so things are pretty hectic. I will update this weekend when I have more time as things are back to the crazy routine each day. I added a photo of all the kids at Christmas at the hockey game.

Thanks for all your prayers, love and support.

Friday, January 5, 2007 6:24 AM CST

Well I am very happy to say that we did make it to the circus last night. We had the dye study done yesterday. I can't tell you how worked up I had myself yesterday. It was all we could do to get in the car to drive to the hospital. We didn't get in to do the study until about 2:00 yesterday. By then my stomach hurt so bad that I almost needed the wheel chair....hahaha I went in with her and watched the monitors as the radiology technician injected the dye into Taylor's port. I was shocked that he was able to get the dye in as on Wednesday they couldn't get it to work at all. I'm standing there in the radiology room with the doctor and all the other people in there and watching the dye go into the port and flow beautifully. The doctor asked me what the issue was with Taylor's port, which I explained to him. He could see nothing wrong with her port. We could only check the medial side as it was the only side accessed. The needle was left in even though we couldn't get it to work Wednesday.

We went back to the clinic and it did stop again in midflow, but flushing it with heparin again made it work. Taylor was able to get her chemo yesterday and we were able to go to the circus. We soaked up every moment of it as we know that we could have been in the hospital at that moment rather than the circus.

We are so greatful to God for helping Taylor's port work as well as get us to the circus. I truly believe that God helped out on this one as well as all of our prayer angels. I was completely stunned when the doctor could see nothing wrong with her port. It is still having some issues, but at least there is not a leak or any displacement.

Please pray for the port to work today and tomorrow. We will get the needle pulled tomorrow after chemo. We will have to make up the day of chemo we missed next week by going everyday, including next Saturday too. I heard Calling All Angels on the way home yesterday too. The radio had quit playing the song for a while so it is amazing that they played it two days in a row and I heard it both times. Thank you Lord. Please continue to pray for Taylor's healing as well as her port. Monday we are going to get both sides accessed and see if we can TPA both of them or perhaps the lateral side will work.

Thank you for your prayers and encouragement.

Wednesday, January 3, 2007 7:06 PM CST

Well our year has not started off too well unfortunately. Taylor's port has been giving us trouble for the past 6 weeks. We have been able to get it to flush and get blood return after the nurses work with it for a while, but today that did not happen. The needle has been coming out the past two chemo rounds and she had to be reaccessed in the middle of the week rather than only once a week for the two week protocol. Yesterday, when she was accessed it gave blood return, but in the middle of the flow it just quit. She was able to get TPA to unclog it and fortunately it did work and she was able to receive chemo and the antibody treatment. Today was another story.

Her port would not work at all today and the nurse tried another round of TPA and lots of heparin, but it still would not flush. They tried to put in an IV into Taylor's hand twice, which was very traumatic and painful for her. Unfortunately, they couldn't get the veins to cooperate. Sadly, we came home without getting chemo.....I can't believe I'm saying that. Her port is a dual port, and the lateral side quit working about 6 months ago so her medial side has taken a beating and is now it is not working either.

We are not looking forward to tomorrow at all. We have to go back in and see if the port will start working by some miracle. The other option is to try and start an IV in her arm this time. We will either do that or try and access the lateral side of the port and put TPA in it and see if it will work. The worse case is that we will have to do a dye study to see why the port is not working. Many things can go wrong since she has had it in for three and a half years. She has grown so it could be relocated or a sheath has formed over it or the blood vessels have changed....ect. ect. I am expecting to have to do the dye study as well as take out the port and put it back in again which requires surgery. My biggest fear is the disease has caused displacement. I'm not sure how real that thought is, but it is there.

Taylor was able to go to school today and wants to go to school again tomorrow, but we will have to go in early to try and resolve the whole port issue. She was crying on the way home and I am so tired of having to see her go through so much pain and loss of a quality life. She is feeling very scared about tomorrow and so am I. We are supposed to go to the circus tomorrow night, which I will make sure happens even if we have to wait another day for the dye study. Three years ago, we had circus tickets and she ended up with a fever and we were admitted that day. I will never forget how devasted she was and the things she said that day.

I am feeling very discouraged and sad that here we are three years later still dealing with the same things over and over again, year after year. I try to stay positive, but it gets to you when your child is not ok. I prayed for the port to work today, but it didn't. I have a hard time when the prayers are not answered in these situations. It is hard to know God is still with you even when things don't work out how you want them to. Driving home, Taylor fell asleep and thats when I allow the tears to flow. I am trying to understand this all and realize that the body is physical and we are beyond that. I was thinking gosh, I really need to hear that song, Calling All You Angels by Train. Two seconds later the song came on the radio. Then after the song I got a call from my pastor. Ok, so God is with us although I don't understand this journey, nor understand Taylor's suffering, he is with us.

So, I am calling on all our Prayer Angels. Please pray for Taylor and I as we have to face tomorrow which is not going to be fun. Pray for the port to begin working and I guess if it doesn't just pray for guidance and direction and that we will make it to the circus tomorrow night.

Monday, January 1, 2007 5:35 PM CST

Please pray for Taylor as we have to start the chemo and antibody treatment regimen tomorrow which means we have to go everyday for the next two weeks. Please pray for Taylor to have very little side affects and that things will go as smoothly as they can. We have to go in on Saturday as well because of the holiday so that makes things harder on her.

We went to the beach yesterday and I took some great pictures of the girls in their "cabana". It was so beautiful here yesterday in the Florida snow.....85 degrees. Please continue to pray for Taylor's complete healing.

Friday, December 29, 2006 5:49 PM CST

Taylor and Jordan are having a great Christmas break. I will update soon as things will return to our normal routine next week. For now, we are all just enjoying the time away from the hospital and all that goes with it. We are just very thankful to be enjoying Taylor having such a wonderful, blessed Christmas. Blessings to everyone and please continue to pray for Taylor's complete healing. Have a Happy New Year.

For now I have uploaded the picture at Christmas with all 15 of us on Christmas Day. I also added a few Christmas pictures on the picture link below.

Monday, December 18, 2006 6:21 PM CST

Just wanted to add a quick update as time is slipping by and I have so many things to do. We all had a great weekend and loved seeing the ICE Exhibit in Orlando. We took some photos, but they did not come out very good as our cameras began to freeze up because it was so cold. Even the cameras couldn't take the 9 degree temperature in the exhibit. I added a few on the photo link below, but they are hard to see the beautiful detail...yes it is all made of ice.

It was so beautiful and remarkable to see 2 million pounds of ice sculptures. It was fascinating to hear how it all comes together and about the people that carve the ice come over from China. If you have a chance to go see the exhibit it is amazing. We couldn't stay very long as although they give you parkas and gloves, it was so cold we couldn't stay very long. Poor Taylor was shaking uncontrollably as her body temperature is lower than normal (95.4 usually) and she was about to freeze after about 20 minutes so we had to leave.

I was able to force the girls to take a picture with Santa. They didn't want to do it, but they smiled for mom.

Taylor did well today with the antibody treatment and is doing well. We are going to try and squeeze in some last minute shopping as we really haven't had much time to do so since we have had to be at the hospital everyday for the whole month. Anyway, I will update later when we have more time. Hope everyone has a wonderful Christmas if I don't update before then. We have the rest of the week off, so we are going to take advantage of it.

Please continue to pray for Taylor's healing. God Bless

Friday, December 15, 2006 6:07 AM CST

Just want to let everyone know Taylor is doing great this week. What a miracle of change from last week. She is feeling pretty well and actually went to school for a little while one day this week which was also an unexpected miracle. Taylor is doing very well with treatment so far and the only side affect she is experiencing is an acne like rash on her face from the antibody treatment. She is not very happy about that, but we are trying to keep it under control the best we can. I knew that was one of the side affects, but it didn't happen the first week of antibody treatment. It was wierd as she went to bed Monday night without anything and woke up Tuesday with this rash. It looks better today, but we will have to do the treatment again on Monday.

Taylor will have a break after Monday and technically she was due to start the whole cycle again the day after Christmas. She was very upset about that and I was disappointed as I thought originally she would have that week off. I told her we would work it out and not to worry. Yesterday we were given the ok to postpone treatment the week of Christmas so that made us all very happy. We have a ton of family coming in so she wants to be able to spend all the time she can with everyone. I think we will have a total of 15 people for Christmas this year. Say a prayer for me to keep my sanity.....smile. Actually it should be alot of fun for everyone.

We are off to Orlando this weekend as we were invited to see the ICE sculpture exhibit in Orlando. It should be alot of fun as it is 9 degrees in there. They give you coats and gloves to wear. We are definately not use to that kind of cold living here. It will be nice to get away from everything and enjoy the weekend together. I'll take some pictures to post.

I just want to thank everyone who has reached out to us to help with replacing the girl's laptop. We never expected that to happen and it is truly amazing that people offer this when they have their own families to take care of. We have experienced a great gift from all of you and feeling the love and spirit of Christmas with all the miracles that take place everyday. I cannot tell you how sick Taylor was last week and then to see her this week is a miracle. God has blown us away and continues to do so everyday.

They are having a prayer vigil tonight at our church for Taylor and our friend Patrick who is battling major complications from a bone marrow transplant. Please take a moment whereever you are to pray for healing for Taylor and Patrick at 9:00 p.m. tonight. Three years ago Patrick's team at work held a fund raiser for our family and brought over a check Christmas Eve. We didn't even know Pat or any of the people who came over. Little did any of us know that three years later he would be in the midst of his own battle. You just never know what tomorrow is going to bring.

The Power of Prayer is a Priceless Gift.

Monday, December 11, 2006 7:33 PM CST

I just wanted to let everyone know that Taylor did great today with the antibody and chemo treatment. We were all really nervous about it and Taylor and I were talking last night about how scared we both were. We prayed together and needless to say everything went very smoothly today. We were able to go to the day hospital for the infusion and we were able to leave around 3:30 today. It went very well today and you actually have room in the day hospital and you can actually shut the door so you don't hear and see everything going on around you which is also very stressful. Normally in the clinic it is like being in the middle of an emergency room all the time.

Taylor has not reacted at all so far today. I asked to keep her on the benadryl 24 hours as I started thinking that she reacted about 6 hours after the infusion which was about when the benadryl would have worn off. She is really tired, but she is doing ok. Her heart rate was great today for the first time in weeks. It was 119 bpm in the clinic today. It got up to 167 bpm last week, so I was so excited as that has been a major concern of mine. I talked to the doctor about the breathlessness and we are speculating that perhaps the antibodies are doing their job by going to her lungs and hopefully the macrophages and monocytes are consuming the cancer cells. We will hope and pray that is what is happening.

We actually had a great weekend which was wonderful. She felt so bad last week and I expected her to not feel well this past weekend either because her hemoglobin was 8.7 and she has been struggling whenever she gets below 9.0. Friday was a really bad day for her, but when she woke up Saturday morning she felt well and her cough had disappeared as well as her lung function seemed much better. They had a friend spend the night Saturday night and they seemed to have a good time. Both the girls were sort of congested on Saturday, but better again by Sunday.

We had quite the day yesterday as we attended the Lightning Luncheon that the Tampa Bay Lightning host at Christmas. Each of the players sponsor a family and we get to have lunch with them. Our sponsor was the Tortorella family who is the coach of the team. They were so very kind and gratious and we all had a wonderful time. The girls were given some new jerseys and had the team members autograph them.

Once we left the luncheon we rushed over to the Bucs stadium to meet Taylor's friend who plays for the Atlanta Falcons. The luncheon ended about the same time that the football game ended. We were worried when we were driving towards the stadium that we had missed him as we passed two tour buses on the way. Luckily it wasn't their bus and we were able to pull right up to the area where they load the buses. I couldn't believe they just let us pull in. So needless to say we got to spend about a half hour talking to him. Let me tell you that dad was pretty happy yesterday, being the sports fan that he is.

I want to thank everyone for all their prayers as I truly believe that God is working some miraculous miracles through Taylor. We have had a couple of people offer to help replace the laptop for Taylor and Jordan. We are totally speechless and overwhelmed with all the kindness and support we have received. I want you all to know that your prayers are working and each time we get knocked down, God picks us back up and just knowing you are praying for us helps so much.

Please continue to pray for Taylor's healing and that she will feel ok the rest of the week. We have chemo everyday the rest of this week and an antibody treatment next Monday. Hopefully, she will have a break through Christmas.

Your prayers are priceless and they are being answered.

Saturday, December 9, 2006 6:35 AM CST

We are all hanging in there the best we can. This week has been very crazy being at the hospital everyday, all day. So many things have happened this week it is hard to explain it all. Yesterday at the hospital we did a scan with radiation in the morning, then chemo and then a CT in the afternoon. We did manage to go to the mall for an hour in between procedures. She was able to buy Jordan a Christmas gift and that is about all we had time for. When we went back for the CT, she got sick on the way to the scan in the hospital. Then she got a nose bleed on top of that. We got all that under control as of last night as we got her some Zofran and that is helping her alot as well as starting her back on the Amicar to help her blood clot.

On top of everything else the girls laptop was stolen out of the car Thursday night. We went to a function at the mall at Build A Bear through the Children's Cancer Center and I guess I must have forgot to lock the car. The one time I forget, they pick our car to steal something. They would have had to have been going car to car and checking to see if cars were unlocked as you couldn't have seen it by looking in the car window. I was just sick about it as they got it for their birthday from their grandparents and it is a major source of entertainment for Taylor when we go to the hospital. We are working on replacing it, but it broke my heart. We also had the toilets back up into the bathtubs this week as well as well as the pool pump breaking. It has been one of those weeks where you just have to say, ok, I give up. All those things can be replaced or fixed. So although we are upset, we are not really too upset. It just doesn't matter, but it is frustrating.

We did get some oxygen delivered to the house. Taylor's breathing has been a little less labored and she hasn't had another one of those episodes since Tuesday. At least we have it now if we need it. We did get to go out to eat last night at her favorite restaurant, Jo-To's. She wanted to go to celebrate my birthday since they were gone last weekend at camp. She is so funny as she always wants to take everyone to Jo-To's.

Cancer is so confusing and baffling. Literally things change from one moment to the next. One moment you have hope and the next it is taken away. Your emotions are on a rollar coaster ride that never ends. We had talked about radiating the spot in her lung that was compressing her trachea, but the radiation oncologists called me last night at 7:30....I was impressed....to tell me that there wasn't a nodule compressing her trachea. Ok, so was it there and now it is not there....who knows. As far as I know today, we are not radiating as she has too much scar tissue in her lungs from past radiation. Taylor was actually feeling well last night and was in good spirits.

Please continue to pray for healing for Taylor. We are supposed to do the antibody treatment again on Monday with chemo. They are allowing us to go to the day hospital this time so we can come home Monday night. I am nervous as although she had no reactions during the infusion, the breathlessness can be caused from the antibody as well as fever. Taylor is very lonely as misses all her friends as she hasn't been able to go to school. Please feel free to call her, come by or send a card. She is still her loveable, determined, witty self. When we came home from the hospital on Wednesday, the plumber was there and I said, well he didn't have to take up the whole driveway, as I pulled in. The slogan on the plumbing truck says "The Prince of Plumping". Taylor said, Well he is the Prince of Plumping you know. I cracked up.

I will try and return all my phone calls this weekend. Things have been so crazy with Taylor's treatment and finishing school that I have been too exhausted to talk or haven't had a place where I could.

Thank you for all your prayers, love and support.

Thursday, December 7, 2006 8:55 AM CST

Taylor is doing well at this moment. I had a really big scare with her yesterday morning as she is having difficulty breathing and having pain. I had unpacked the car Tuesday night and repacked in 5 minutes yesterday a.m. thinking we have to go in. She asked me, Why are you taking your clothes? I am not staying at the hospital. Needless to say she would not get out of the wheelchair when we arrived at the hospital yesterday for chemo. She was a little better once we got there as we got the pain under control with medication. We did come home yesterday afternoon and are going back in today of course.

Taylor is really struggling with her breathing and we are working on getting oxygen at home for her asap. We haven't received any good news from anything we have done in the past few weeks. However, Taylor is the most amazing beautiful spirit. Her spirit continues to shine everyday and I am so thankful to be her mom. I just wish her spirit could heal her physical body as strong as it is. (I don't know if that makes sense). She asked everyone to make Christmas lists last night as she wanted to go shopping for everyone. My heart melted and I just am overwhelmed with her love even though she is struggling.

I guess the most recent tumor to pop up, there are so many, is pressing on her trachea so that is why she is having such a high heart rate and difficulty breathing. Yet I hear her in there talking to Grammy so cheerfully and watching the cooking channel. She loves to cook.

Please continue to pray for amazing, beautiful Taylor and our family. Please continue to pray for healing and guidance.

Tuesday, December 5, 2006 3:59 PM CST

Taylor was admitted yesterday for the antibody and chemo treatment. She woke up yesterday with a bad pain in her side so when we got to the hospital they gave her some pain medication to help her feel better. Her platelets were on 47,000 and were supposed to be 50,000, but they went ahead with the admission. She stayed on the pain medication all day as the pain seemed to hang on until this morning. She made it through the antibody treatment and chemo without any reactions. However, about 5 hours later she became very sick and had a severe headache. It took several different medications to stop the nausea. Needless to say around 2:00 a.m. her heart rate was up to 167 bpm. It should be around 90 bpm. They nurse kept coming in to check on her and monitor her heartrate, but they aren't doing anything for her to help slow down her heartrate.

They did the ECHO and EKG yesterday, but I haven't heard anything on it. They did a chest xray and U.A. to rule out things that were causing the pain on her right side. I haven't heard on the bone marrow, but it doesn't really matter. Taylor's heartrate was high again this morning, but they tell me they can't really do anything as it is the disease progression causing this. Unfortunately, the chest xray shows more disease than a few weeks ago. The MRI of the spine wasn't good either. She received chemo again today before we left and is supposed to receive it everyday this week and next. She is supposed to receive another antibody treatment next week too. It is causing her to have severe headaches. I really don't think her body can take much more.

Taylor is really struggling and we really need a miracle right now. I haven't slept and spent most of last night crying just watching all this happen. This is the most horrible, helpless feeling I think you can have. I am so sad and I just feel so lost. Please just pray for Taylor and our family. Your prayers are the most you can do for us.

Sunday, December 3, 2006 7:09 AM CST

Well I do have some praises to share for Taylor. After I entered a journal on her website on Wednesday she began to feel better almost immediately. She was so sick on Wednesday that I had already called the hospital and was watching her thinking I would have to take her in. She didn't have a fever, but she didn't look good and was coughing and really struggling. She went with me to pick up Jordan from school and while we were in the car line she blew her nose and needless to say alot of green junk came out. Later in the evening she was 100 percent better and was laughing and playing with Jordan. Whenever I ask for prayer, you would be amazed at how God answers at times.

Needless to say we went in Thursday to relunctantly have the bone marrow aspiration done. I had told them Wednesday I didn't think we should do it because Taylor was sick as well as it wasn't going to make a huge difference in how she is going to be treated. Since she was feeling well on Thursday and her platelets were still ok from the transfusion we went ahead with it. She wasn't nervous and didn't complain at all. I felt like it was totally out of my hands and it has happening without any control over the situation. Sometimes when things like that happen it has been God's will not mine.

Taylor was very sore when she woke up, but we were able to go home about an hour after the procedure. They put her on some antibiotics for an upper respiratory infection as well as tylenol 3 and we went home. That girl is so determined and we did end up making the Children's Cancer Center Christmas party which was wonderful. We didn't stay the whole time, but at least she was able to go.

She didn't feel well at all on Friday so I had to cancel the ECHO and EKG because she has to lay on her back, which hurt in order to get the procedure done. We didn't know if she would make it to Santa's Workshop Camp or not and literally we were on the fence until 5:30 p.m. and registration started at 6:00. She had gotten sick when she tried to take a shower, but I think she was a little scared when I took off her bandage from the procedure. Once she had gotten sick she felt better and we went to camp.

Of course I was scared as I packed up her nine different medications to go to camp. I'm thinking, what if this happens, what if that happens. Ultimately she wanted to go and really she is in God's hands no matter where she is so I let her go. It's just that false sense of I have to be there to make sure she is ok feeling. I did call yesterday to check on her and they told me that she is doing great and she was the only kid they had to chase down to take their medications. Usually the kids go to them, but I guess Taylor was having a good time.

It was wierd without the girls yesterday, but it was my birthday so I took myself to the mall and shopped a little and got a massage too. I have felt like I have had someone standing on my shoulders for many months and I just couldn't take the pain anymore. It was wonderful to not have to rush anywhere or have to go home and study (although I have one more final left). Two down and one to go...yea.

Well tomorrow we are supposed to start chemo and the antibody treatment. It is very scary as they are not approved for use in children although they have been used on children. The antibody treatment requires an admission and if everything is ok we should come home Tuesday. The chemo is everyday for 2 weeks which she hates. She has been on the chemo before which didn't work, but I guess if you try it with the antibody it is supposed to attach to certain receptors...blah, blah, blah. (very complex stuff). This is all contingent on Taylor's platelets and potassium. Her potassium had dropped again even though she is on potassium pills. They gave her potassium by IV when she had the aspiration done and I was surprised they let us come home as low as it was.

Please pray for good results from the bone marrow aspiration. If the disease has progressed to the marrow that is not good. Pray that her potassium levels come up. I will have her eating bananas today, even if she doesn't like them. Pray that her ECHO & EKG will be ok. Pray that the antibody treatment will not cause too many reactions.

If you are interested in supporting the Children's Cancer Center holiday card project, please visit the link below. They sell Holiday Cards that children have drawn. They are beautiful cards with alot of meaning. Children should fly kites, not fight cancer.

Wednesday, November 29, 2006 11:00 AM CST

Well this week has been rough for Taylor. When we went in on Monday for labs Taylor needed platelets again as they had dropped once again. It took 2 and and half hours to get her counts back and then they did not have the platelets there and they had to get them from the blood bank which would have taken another 2 hours so we had to go back yesterday for platelets as we ran out of time on Monday. Taylor has not felt well since Sunday. She has gotten a cold that has now developed into a nasty cough and congestion. She feels really bad today. I am giving her breathing treatments again, but we will probably get a chest xray when we go in tomorrow to make sure she is not developing pnemonia or bronchitis.

They suggested doing a bone marrow aspiration tomorrow, but I don't think we are going to due to Taylor being sick as well as many other factors. We may start on chemo next week along with the antibodies, but it will depend on her platelets. They want to do the aspiration to check her marrow to make sure there is not disease in her marrow because she is not recovering. I don't know how much more she can take as well as us. Things have been very tough this week and I won't go into it except to say that Taylor needs your prayers. We are all very strained and exhausted emotionally, spiritually and physically.

If we don't get admitted tomorrow we also have to go back Friday as Taylor has to have an echo and EKG to check her heart function. Her heart rate has been tremendously affected since receiving radiation again so we need to check her heart to see if it is functioning properly.

We are supposed to go to the Christmas party tomorrow night that they have every year for the Children's Cancer Center, but I don't know if we will make it. The girls were supposed to go to camp this weekend through Faces of Courage that they have every year which is great fun for them, but I don't know if they will make that either. They usually get to participate in the Children's Christmas parade and ride on a float as one of the activities and throw beads, but i just don't know if that will happen.

Thank you all so much for all your prayers and kindness. So many people have reached out to us and many of them we have never met or known. Know that we are so greatful and thankful for each and everyone of you and your prayers are appreciated more than we could ever express in words.

Sunday, November 26, 2006 7:01 PM CST

I hope everyone had a good thanksgiving. We stayed in town....well why would we go anywhere with this beautiful whether we are having. We went to have pancakes on the beach on Saturday which is such a great way to start a Saturday. One of my mom's friends was in town so we took her to experience the beautiful ocean with great pancakes. I uploaded a photo on the link below.

Taylor is doing ok. She had a great day yesterday, but she is very tired and weak today. She is trying to catch a cold so I hope that is all that is going on. I have had this really sick feeling all day and I hate when that happens. Basically, I have worried alot today about Taylor....more than usual. I am very concerned about her heart rate. We have to go in tomorrow for labs, so they will check her vitals tomorrow. I don't know if we will get the MRI results or not since we had it done right before a holiday. I don't really want the results...oh I guess it just dawned on me where that sick feeling is coming from inside. I don't like hearing the MRI results as it is easier to remain hopeful and sometimes those scans are a big slap of reality. Anyway, that's where lots of prayer comes in.

I'm not sure what kind of therapy we will be doing. They are talking about using antibodies, but I'm not sure yet. The theory is that the antibodies specifically attack the cancerous cells, not the good cells. That is a great theory and hopefully the wave of the future for treatment. I know that would be a wonderful thing, but I also know that if it was really successful they would use it as first line treatment. I'm not trying to sound negative, it's just that after Taylor has received over 25 different chemotherapy drugs and three different rounds of radiation I am a little hesistant to put all my faith in another therapy. They have many side affects all of which are scary. The body will most likely react as that is what it is supposed to do, but it can be scary.

I am continually learning that we can only rely on God. We have to focus on that as it is so hard to feel so out of control and unable to take the cancer away from your child. I can't explain how helpless you feel at times as a parent. When I was downloading some pictures today, somehow I clicked on the wrong thing and it took me to some pictures taken prior to Taylor's diagnosis. There were also some videos shot with our new camera we got for Christmas that year. Taylor is and was so animated in those videos. It just made me cry as that was the last Christmas which was in 2002 that she had hair, that she was happy and healthy and life seemed so simple, so free. I wish over and over we could have that back. That little girl has been through so much over the past three years and I just wish I could fix it.

Please continue to pray for Taylor's healing and that the MRI will be stable and/or show improvement. Please pray for guidance in Taylor's treatment.

Thursday, November 23, 2006 6:21 AM CST

Happy Thanksgiving Everyone

Taylor has had an eventful week this week. On Monday she had to get platelets as they had dropped to 19. So she was not able to receive Avastin on Monday. She was actually able to go to school all day on Tuesday which was great. I don't even know the last time she went to school a full day.

Yesterday was a challenging day for her. We had to go to the hospital for a MRI and she ended up needing blood as well unexpectantly. When they initally took her vitals her heart rate was extremely high so although her hemoglobin was 8.6 which isn't quite transfusion level, the doctor allowed her to receive blood. I guess she has so much going on that she isn't tolerating her hemoglobin being too much under 9.0. A normal persons is 12.0 to 15 so you can see why it can affect her so much. So we were at the hospital until 9:00 p.m. last night. She also received Avastin yesterday as her platelets were high enough to receive it. Technically it had only been 48 hours since she received platelets, and they last about 72 hours so they will probably drop again over the next few days as they are not all her own.

Needless to say she was very upset over having to be at the hospital so long. We had to go upstairs for the blood transfusion to a room so she was upset that we had to go upstairs. Once she finished getting blood she said, they know I am going home, RIGHT? In otherwords we are going home regardless.

Yesterday in the clinic a lady came in and was playing the harp to help sooth the patients. Well she was getting upset because the harp playing was interfering with her watching her Scooby Doo movie. You just have to know Taylor as she is very strong willed needless to say. She kept giving the lady looks like "I'm trying to watch Scooby Doo here". You just had to be there. I tried to tell her how unique harp playing is, but she was just not into it.

As long and frustrating as yesterday was, we did come home last night. As we walked out of the hospital, another family was walking out without their loved one who passed away yesterday. I am continually reminded how precious life is and how your whole world can change drastically in a moment. None of us know what tomorrow will hold. Love your families today and be thankful and grateful for every moment even if that moment doesn't seem so great to be thankful for.

We are definately giving thanks today for us all being together on Thanksgiving as well as thankful for all the love, support and compassion we have received over the last three years. We are blessed to enjoy another Thanksgiving together this year.

Please continue to pray for Taylor's healing. Pray for those families who face their first Thanksgiving without their child this year.

Saturday, November 18, 2006 9:26 AM CST

Taylor had a good rest of the week. She was able to make the field trip on Thursday and Friday as well as the hockey game last night. She was able to go down to the ice to help announce the "Let's Play Hockey" at last night's game. The game was sold out last night so there was a crowd around 18,000 people. Last nights game was so exciting! The lightning won after an overtime and then 3 on 3 shootout and then to "sudden death". (I hope I got that all right) I think it was one of the most exciting games we have been to. The crowd was so pumped up so it was very loud. I know they wanted to win so badly because it was Yerrid Fights Cancer night and this makes the 8th year in a row they have won on this night.

Taylor has felt really well although her platelets went down to 24 as of Thursday. No nose bleeds so that is great. Her potassium has been holding steady with the potassium pills and she seems to be doing well these last few days. I guess we will try to get Avastin again on Monday. She hasn't been able to get it because her platelet count has to be at least 50. I guess we are supposed to have an MRI on Wednesday.

I'm not sure what the plan is for treatment, but we will discuss that next week. Please continue to pray for Taylor's healing and guidance in treatment.

I got a good picture of Taylor, Jordan and their friend Peyton at the game last night. I added a photo of Taylor on the Jumbotron on the photo link below, but it is hard to see.

Wednesday, November 15, 2006 7:41 PM CST

We went to the hospital on Monday and found out that Taylor's hemoglobin had dropped to 6.9. She received a very large unit of blood and that has helped her feel alot better. I guess her hemoglobin was so low that it was affecting her heart rate, respiratory and contributing to the shaking issues she was having. She is still shaking a little, but she is so much better than she was over the weekend.

Yesterday she went to school for the first time in 2 weeks (I think). She wanted to go on a field trip with her class. We thought she would be ok since she seemed to feel good Monday night, but we had trauma as usual. The poor thing got a nose bleed right when she was getting on the bus to leave for the field trip. Needless to say she was hysterical. Her platelets were low on Monday, but not quite low enough for a transfusion. They were 29 and transfusion level is 20 for her. We had to go pick her up from school and bring her home to try and get the nose bleed stopped. After about an hour we got it stopped by giving her Amicar which helps her blood clot. Needless to say dad and I both took her to the field trip and hung out with them all day. It was actually a beautiful day and it was a great break for all of us as we spent the day outdoors. I felt so bad for Taylor as she had to keep wiping her nose with a hankerchief the whole time as she was getting a little residual from the nose bleed all day. It breaks my heart to see her just want to be normal and have to worry about medical things all the time.

Needless to say by the end of the day she was in a great mood. She was in the best mood last night and today that I have seen her in weeks. I think the steroids had finally gotten out of her system and we got our Taylor back. I didn't know if I was ever going to see our "true Taylor" again as she has been struggling for so long. She was so sweet today as we went to the hospital again today. Her platelets were 26 today, but still not low enough for a transfusion. She has not had any bleeding today so we are keeping our fingers crossed that she is going to be ok. The kids have a field trip on Thursday and Friday all day as well so we are doing our best to let her attend. So that means we have to go to the hospital again tomorrow after the field trip to get her platelets checked again. If she needs anything we will have to go back on Friday morning to get platelets so she can attend some of the field trip.

I was dreading going to the hospital today as I knew they would have the CT results. I was almost sick to my stomach by the time we got there and when the nurse asked me if I had seen them yet and I said no. She asked if I wanted the results and I said no, but got them anyway. The results were not what we had hoped for, but is pretty much what I expected them to be based on her struggling more with her pulmonary function. I guess we still have to get an MRI next week, the day before Thanksgiving. I hate getting the results of scans. I can't tell you how sickening it feels to hear this stuff over and over and what it does to you. I told them I couldn't go in today and meet with doctor to discuss the results as I just didn't have the heart today. I knew I was on the verge of breaking down and would loose it if I tried to talk. I feel like everytime we go in we have to sit down and discuss the results I feel like we are being sentenced or something. I don't know what we will do now. They mentioned a possible drug they might use, but I can't find anything on it anywhere which is not good. That means it hasn't been used alot or at least that is how I am interpreting it.

I have still be going to school through all of this. It is the only thing besides prayer that gets my mind on another focus. It has been so difficult, but Taylor is my motivation so I keep going. Yesterday when I left class (after taking a nasty exam) a man handed me a little bible. I was thinking well I could have used this before the exam. I was distressed when I was leaving as that is when I got the call about Taylor's nose bleed. It was like God saying here is your strength and I will help you. This morning I had a few minutes before class and I read proverbs in the car until I had to go in. When I walked into the door, this girl walked in front of me and the back of her t-shirt said, "Never give up", "Keep going forward no matter what". Ok, I don't think I have seen that slogan on a t-shirt too often, especially at that moment. So after I had my meltdown today in private, I just decided that is what we have to do. I can't look at the medical side of things, although that is what I am doing in school. It has enlightened me to understand the doctor's side of things, maybe too much. We have to focus on each day as that is all we have. I went back to something I read somewhere that said. Happiness is based on happenings, but joy is based on Christ.

On the bright side we are supposed to go to the hockey game Friday night for the Yerrid Fights Cancer night. He donates 500 tickets to cancer patients and their families to go to the game. Taylor has been asked to announce the "Let's Play Hockey" at the beginning of the game. She is a little nervous, but I'm sure she will do a great job. So if you locals are going, look for her on the jumbotron Friday night.

Please continue to pray for Taylor's healing and guidance in her treatment. Everytime I ask for prayer, God has answered our prayers even when I couldn't pray, I knew you were. Taylor was so happy last night which was so wonderful to see. So you see we can't let those scans dictate our lives and only be greatful for all the miracles we have seen and appreciate all the great moments.

Sunday, November 12, 2006 11:10 AM CST

Taylor is doing a little better than the middle of the week. I think she was having a delayed reaction to the platelets she got on Wednesday. Taylor has been struggling with being tired alot and she is shaking really badly. We will have this checked out tomorrow when we go in. We think she has developed some neurological problems. I thought maybe the steroids were causing the shakiness, but it has gotten a little worse each day although she went off the steroids a week ago. Her hands are shaking really bad and makes it hard for her to hold onto things.

She was able to attend the kids fishing derby and she seemed to have a really good time although she didn't catch anything. It was a beautiful day and it wasn't too hot this year. We were also able to attend the Fishermen's Ball Friday and enjoy all the great food they had there. It is always fun to watch them auction things off to raise money for PCF cancer research. I don't know how much they raised, but I bet it was close to the one million mark. I just pray they can find a cure for pediatric cancer in the near future. Each time we attend an event like this I see more and more people and businesses jumping on board which is very encourging. I think the awareness is greater in the Tampa area than many other areas in the country.

Well tomorrow starts another stressful week. Taylor is having a CT scan tomorrow morning to see where we are at. I guess they need to evaluate her since having radiation again. I am so dreading getting it done as I don't even want to know the results. I just don't want to hear any more. It's hard to explain that statement unless you have been there, but I'm sure everyone can understand. She is supposed to have a MRI of the lower spine too, but I'm not sure what day yet. I guess we will inquire about her seeing a neurologist to help with all the neurological issues that are happening. I think she could also use some physical therapy as she has become very weak since receiving radiation.

Please continue to pray for Taylor this week. Pray for healing and that her potassium levels have come up so she won't be admitted. Please pray for guidance and direction in Taylor's treatment. Please pray for strength as we just need to be uplifted beyond all of this. Watching your child go through this is just so hard. I know Jordan is really struggling with all of this too. Please keep Jordan in your prayers too.

Thursday, November 9, 2006 12:53 AM CST

This week has definately been a rollar coaster ride with Taylor. Monday she felt ok, but Tuesday she was struggling with alot of pain in her ankles. Tuesday night she was crying alot as she was having alot of pain in her feet. Yesterday we went in for a potential infusion of Avastin, but her platelets were only 16 so she was not able to receive the Avastin. I had hoped that some of the pain was coming from low platelets so I was somewhat relieved to find out that maybe that was the case. We also found out that her potassium was low so they put her on potassium pills. That must have been what was causing the severe cramping in her muscles. She was ok yesterday, but last night her heart rate was racing and her respiratory function was elevated. Needless to say I pretty much stayed up all night watching her. Hopefully the potassium pills will help with the cramping as well as helping her heart not have to work so hard.

She seems better today as far as her respiratory and heart rate function are concerned. I am seeing alot of things happen with her motor function and it is very hard to watch all of this. I don't know if it is from the effects of the chemo drug which over stimulates the nervous system or the thalidamide which affects the nervous system or the radiation effects on the nervous system or the disease pressing on nerves. I just wish I could fix it and make it go away.

Please pray for Taylor and that her potassium levels do not drop lower as that would mean an admission. Pray for healing for Taylor and that she will have a better night tonight.

They that wait upon the Lord shall renew their strength. They shall mount up with wings as eagles.

Monday, November 6, 2006 4:05 PM CST

Update: Tuesday, November 7th:

Things really change from one day to the next. Yesterday she was doing pretty well and today she is not doing so great. Taylor is struggling today and having alot of pain in her ankles. I hope maybe it's just low platelets and not coming from another source. It's all pretty scary considering what happened the last time we took her off the steroids. She is pretty emotional today as well, probably due to going off the steroids. Please pray for healing and pain relief for Taylor today.

Taylor has been doing pretty well over the past week. She did need platelets on Thursday, but today they were stable enough that she didn't need them again. She seems to be doing fairly well other than a few aches and pains here and there. Today was her first day off of steroids which she has been taking for 3 weeks. She was on Prednisone 2 weeks prior to that so basically she has been on them for about 5 weeks. So far so good today. When we took her off steroids in October, that is when everything started to go down hill. Hopefully this time the radiation it will keep the tumor off the nerves and she won't be affected. She will only be off the steroids until her next cycle of chemo. She is supposed to receive Avastin on Wednesday.

We are looking forward to the Kids Fishing Derby this coming weekend. Hopefully I'll have lots of great pictures to share. I always share the story of a few years ago at the fishing derby. They usually have some celebrities there and Wade Boggs is usually one of them. He was helping Taylor fish and after about 5 minutes of him hanging out with her, she said, I think I'll go fish with my dad now. It was so funny as all the dads there are running over themselves trying to take pictures of him and the kids have no idea who he is. I'll never forget the look on his face....like ok what do I do now. It was just priceless.

They also have some of the guys that host fishing shows there. I have no idea who they are as I don't follow fishing. Last year the girls had not caught any fish. I'm thinking what is so hard about fishing. You just throw in a line...right? Well, I guess that's not true as after about 30 minutes one of them comes over and tells Taylor exactly what to do and how to do it and low and behold she caught a fish. I was amazed to see that fishing really is a sport and there really is some skill involved and they do know what they are doing. I had wondered how do these guys make a living at fishing and have a show about fishing that people watch to learn how to fish. I guess they showed me.

Taylor's story and picture is now up on the Hyundai Hope on Wheels website which I have added to the links below. For those of you who don't remember....she was the runner up (like Miss America's runner up....smile) selected out of hundreds of entrys nationwide for the Hyundai Hope On Wheels Kid's Spokeperson.

The Pediatric Cancer Foundation link is also listed below and anyone who wants to participate in the celebrity fishing derby can sign up as well as attend the Fishermen's Ball which is a live auction to benefit PCF which funds research specifically for pediatric cancer. Also remember the Cadillac Golf Invitational in honor of Jacob Duckworth on December 4th to also benefit PCF. Also see the Children's Cancer Center link below to order your holiday cards. Kids from the center draw the pictures that go on the cards which are really beautiful. They also can be found at most Publix stores in the Tampa Bay area.

Please continue to pray for Taylor's healing.

Slideshow below is Taylor's Fundraiser held on October 21st which raised $17,000 for medical costs.

Make video montages at onetruemedia.com

Tuesday, October 31, 2006 2:39 PM CST

The girls had a great birthday weekend which we are all still recovering from. I just haven't had alot of time to update yet, but wanted to let everyone know that they girls had a great weekend. Friday night we all went out as a family to dinner to celebrate the girls birthday. We had both sets of grandparents here so the girls really enjoyed that. The girls wanted to go to the Melting Pot again this year so that is where we went. Good thing all the grandparents were in town to pay the bill....smile. Saturday the girls had their party and we survived having 13 girls spend the night. We went to Park Square for a little while where about 500 people sang happy birthday to the girls. They were very successful in supporting Camp Sunshine and last I heard they had raised over $10,000 which benefits Camp Sunshine.

Sunday after the birthday party we all went to the hockey game to celebrate the girl's birthday some more. The girl's racked up three different cakes this past weekend. We were fortunate to be invitied to see the game in Brad Richard's suite and then were able to see him after the game. We were all pretty worn out by Sunday night from the birthday weekend. I added a few birthday pictures of the girls on the photo link below.

Taylor completed her last day of radiation today so she is very glad to finish radiation for the third time. She is doing pretty good most of the time, but she is struggling with being tired easily. She is continuing to tolerate everything fairly well. She is ready to get off the steroids for a few weeks as she is upset that her face is puffy from them. She is so small everywhere else except for her face so that is bothering her. She has 5 more days I think of them and then will get a two week break.

Both of the girls made the presidents honor roll which is tremendous. We are so proud of both the girls. They have to overcome so many things in dealing with all of this. To be able to achieve straight A's is amazing in the midst of everything.

When things were so grim a few weeks ago in the hospital I was praying for Taylor in the midst of dire circumstances. I was sitting on her bed with my back to the TV. The TV was on the Disney channel, but Taylor was not awake. Once I finished my prayer, I heard Amazing Grace being sung. I wasn't paying attention to what was on TV. I turned around and the show Sister, Sister was on and I guess the episode was one where the girls on the show who are twins were in a choir and they sang the whole first verse of Amazing Grace. Now it is pretty unusual to hear Amazing Grace on the Disney Channel and especially at that moment that centers around twin sisters. At that moment I knew that no matter what was going to happen God's Amazing Grace was with us. God has literally shown us miracles with Taylor. I feel he has literally opened up the heavens and is showing us what he can do.

Please continue to pray for Taylor's healing.

Check out the Pediatric Cancer Foundation link below to find out about several events including the Fisherman's Ball and a Golf Classic to benefit PCF in celebration of Jacob Duckworth.

Below is a slide show of the amazing yard sale that raised over $17,000 a few weeks ago to help with medical expenses. Everytime I think about this I am overwhelmed with gratitude. Watching this made is so emotional as we are so blessed to be cared for and loved by so many people.

Make video montages at onetruemedia.com

Wednesday, October 25, 2006 2:46 PM CDT

Well so far Taylor is doing pretty well with radiation, chemo, Decadron, and Thalidamide...and GCSF injections. (yuck) I just hate having to give her that injection everyday. She had a very long day Monday and didn't get done until 7:00 p.m with radiation and chemo. The Oxilaplatin causes her to have immediate cold sensation issues as it did last time. She says it feels like needles sticking her when she attempts to walk on the tile so she has to wear her shoes around the house. She can't drink anything cold and this time her cheeks are hurting when she eats. Needless to say she is having difficulty with those issues, but her spirits are pretty good.

We are still overwhelmed with the garage sale proceeds that have come in. The more it soaks in the more we are in awe that so many people donated at the fundraiser. It's definately a "God deal". I only hope that someday we can repay all the wonderful things people have done for us. We would give up everything just to have Taylor cured. I better be careful what I say as it seems everytime I say something like that it happens. That would be ok.....smile

We are getting ready for the girl's birthday party. Again our community is continuing to do things for us which just happens to fall on the girl's birthday Saturday. The community is having a big Halloween Festival and the developer donates to a camp called Camp Sunshine each year. This camp is for families with children who have life threatening illnesses. It is a place where families can come together to learn to cope with all the issues cancer brings. Send me now!!!....... Anyway, they have offered to send us to the Camp sometime in the next year. So all the proceeds go to the Camp, and I guess one of the things they do is recommend a family from the area to go and send us there.

Since the festival happens to be on the girl's birthday they want to have a cake there and sing happy birthday to the girls. That should be pretty fun. We are just overwhelmed with all the people who have contacted us and done things for our family. It is truly an amazing thing. I opened up my one of my little devotional books this morning on my way out the door and opened to a page that contained one of my favorite verses. This is what it said.

God's Help Is Near

Faith is the belief that God is real and that God is good...It is a choice to believe that the one who made it all hasn't left it all and that he still sends light into the shadows and responds to gestures of faith....
Faith is the belief that God will do what is right. God says that the more hopeless your circumstances, the more likely, your salvation. The greater your cares, the more genuine your prayers. The darker the room, the greater the need for light.

God's help is near and always available, but it is only given to those who seek it. HE STILL MOVES STONES

FAITH MEANS BEING SURE OF THE THINGS WE HOPE FOR AND KNOWING THAT SOMETHING IS REAL EVEN IF WE DO NOT SEE IT. HEBREWS: 11:1

I would say that this has truly happened to our family as we have been in some pretty dire circumstances for the past three years. However, we have received so much love and support along the way we are truly greatful we have gone through this situation. While we want nothing more than Taylor to be ok, we see how far the love of God has reached through it all.

Please continue to pray for Taylor's complete healing.

I put a picture of the girl's from their birthday last year at the melting pot.

Sunday, October 22, 2006 5:47 PM CDT

We had an amazing turnout at the garage sale yesterday. We are so overwhelmed with gratitude that I don't even know if I can put this into words. Thank you everyone who organized, participated, volunteered, dropped off items and showed up yesterday. Thank you to our church, Grace Community for allowing the sale to take place on the grounds. I know alot of you watched the news last night or were at church this morning when they announced the grand total. For those of you that don't know, it was $17,000!!!!

We can't believe the outpouring of support for Taylor and our family. We have been going through some difficult financial times due to job loss so this will help so much. We would have never imagined that the sale would have brought in so much in one day. We are so greatful that God has always provided for us no matter what. As our pastor put it, that kind of support only comes from God. This was all done out of love and support of Taylor and our family. Wow! I have always said we have never asked anyone to do anything, yet they continue to do everything. God has allowed us to focus on Taylor and not have to worry about how we are going to pay the medical bills, COBRA and the mortgage.

I looked around yesterday and just watched all the people who were volunteering and/or participating in the sale. Everyone was so happy to be there despite the 90 degree whether. As I looked around, I saw how this is how God intends it to be. He has brought all of these wonderful people into our lives and we are all walking through this journey together. People gave up the time and obligations to be there for us yesterday. People drove from great distances to be there as well. When you stop and think about all the support, it is just overwhelming.

Thank you again, Heather, Holly and Sherry. I only hope I can be more like you. I am sure God as well as Jacob, Paige and Zachery are proud of you all for setting such a wonderful example in such difficult times. Even though this journey is so difficult, I know you have all walked in my shoes and I am so blessed to know you all.

Tomorrow starts another stressful week with Taylor's treatment. They are wanting to do chemo tomorrow on top of radiation. I am very nervous as she had such a hard time with it last time. I am not too excited about adding radiation on top of it as I am afraid of increased toxicity. I know they wouldn't say it was ok to do both if it wasn't, but I'm sure it won't be easy. She will also be on the Prednisone and Thalidamide along with the chemo and radiation. Pray for Taylor this week. Pray that she will be able to tolerate all of this without too many side affects. Pray Taylor will be able to feel well on the girl's 12th birthday on Saturday. We are going to have the Big Party Now!

There are so many people who have reached out to our family. Many of you we know, many of you we don't know. Please know how much all of your prayers and efforts are appreciated. We know you have given your hearts to our family and we couldn't ask for more. We see miracles, even though Taylor continues to fight this uphill battle. She is such a miracle to be still smiling after 3 years of chemo and radiation.

BELIEVE, TRUST AND F.R.O.G.

FULLY Rely On God

Friday, October 20, 2006 6:43 PM CDT

We visited the garage sale being set up this afternoon for Taylor. I cannot tell you how amazing it was to see all the people coming together for this. Many of them have been there since 7:45 this morning and are still there accepting and pricing items. It was almost 90 degrees here today and the sale is outside so needless to say everyone who has been there all day is sunburned, hot and tired. No one was complaining and everyone had smiles on their faces. The sale is huge and we were amazed at the turnout. Thank you so much Heather, Sherry and Holly for bringing all of the people together to make this event happen. These beautiful ladies have all lost their children to childhood cancer so seeing them putting their hearts into this is just heartwarming. There are so many people involved in helping putting this together. Thank you all so much.

Taylor was feeling pretty good today which is always a blessing. She wasn't feeling too good earlier in the day after radiation, but she perked up and was able to do an interview this afternoon with Fox 13 news. They told us the story would air tonight on the 10:00 news. I missed the news story done earlier in the week on Bay News 9 so maybe we can catch that one.

I just wanted to say how greatful we are and it is amazing this young lady has impacted so many people in the Tampa area as well as nationwide. I looked around at all the activity with a greatful and humble heart at the sale. Last Friday we were in the hospital and things were very grim. Today we are enjoying the day and watching Taylor walk around the sale looking at all the items. What a miracle to see.

I will update after the sale, but I just wanted to say how greatful we are to everyone who has reached out to our family. We are so blessed through such a difficult time. Again, we are just so amazed as we have never asked anyone for help...we have never had to.

Here is the website to see the video on the story done last night. Once you are there click on the story to on the right of the page that says "yard sale personal for three women". It brings up a commercial at first when watching, but then goes right into the story. I added the link below, on the links section on the bottom of this page.

http://www.myfoxtampabay.com/myfox/pages/News/Local?pageId=3.2

Wednesday, October 18, 2006 6:24 AM CDT

Taylor has been doing so much better the past few days. She actually went to school for a half day on Monday. I was very scared to send her to school, but she insisted. Yesterday she received an infusion of Avastin and felt pretty well yesterday. The dose of steroids has definately helped her. Her personality continues to shine and keep us all entertained. On Monday she asked me for money to buy a ticket to the dance they are having at school on October 27th. Jordan said, You're buying a ticket to the dance????? Taylor said, yes, why wouldn't I? Hello.......this girl continues to amaze us all considering a week ago she was losing her right leg function.

Yesterday I talked to the neurosurgeon and the doctor he wanted to talk to was not available. He just wanted to see if the surgeon he trained with in NY had any other suggestions. I called the radiology oncologist to let her know what had transpired on Friday and that we did not go into surgery and it didn't look like we would. She advised that we should radiate immediately and since we were already at the hospital to bring her over to the radiation area. They called us back last night and Taylor is scheduled to start radiation again today. Basically the tumor on her spine has become resistant to chemo and radiating again is very dangerous, but if the tumor continues to grow it will take us back to where we were last week. The steroids are keeping the swelling under control for now, but it won't stop the tumor from growing. No one really wants to do radiation either, but I guess we have to go this direction again.

Her spine has already been radiated on L4 and L5. They hope they can hit it in a different area and hopefully reverse it's course of growth. So we are radiating even though they told us we couldn't radiate in September. I am scared because they tell us in all likelyhood it will cause her to loose her function in one to two years. I hate having to make those decisions, but again we are trusting the doctors and most of all trusting God. I didn't know when I called the radiology oncologist yesterday, she would say bring her right now. It seems so many things are out of our control, and that someone else is directing our paths. I have to only believe God is driving because if you saw Taylor last Friday and you saw her today, you would not believe it. We are all still in awe.

I want to thank everyone for reaching out to us. We are so overwhelmed with all the support and wonderful words everyone has to share. Taylor was a little down night before last and she said mommy, I feel like I am just here and no one needs me anymore. I of course, told her how we all need her and what a miracle she is. She said mommy, I just don't know what my purpose is and I feel lost. I said honey, you are fulfilling your purpose and some people never know what their purpose is their whole lives. I told her we all feel that way from time to time, but that God is definately using her to reach so many people and use her to show everyone that miracles do exist.

Please continue to pray for Taylor and pray for Jordan too. This is all so hard on her as well. Pray that radiation will go smoothly today. The first day is always the hardest as they have to line up everything and mark her skin which is not a pleasant process. God bless everyone and thank you so much for your support.

Saturday, October 14, 2006 8:42 AM CDT

*****SUNDAY UPDATE TODAY******

Taylor is doing much better today in comparison to the past few days. Hopefully, the steroids are working to reduce the swelling in the tumor and giving her some relief. Remarkably she is up and walking today with no pain and her right leg is functioning today although it is still compromised. I can only say that this is a miracle because the way the tumor is and has been growing was causing her to loose more function everyday. Friday night she couldn't walk from her bed to the comode next to her bed and today she is walking around the house.

So I am claiming this miracle for today. I don't know how she will be tomorrow, but just for today know that our prayers are being heard and God is continuing to use Taylor as a vessel of his power. I am going to put a picture of her and Jordan this afternoon. I will say I am completely blown away as I am sure the doctors would be too to see her like this today. I know that we made the right decision not to take her into surgery by seeing her today. I will say we were so disappointed on one hand not to go into surgery, but yet today we see why. Actually we did not make the decision, God made it for us.

I found this bookmark in my bible cover today. I haven't looked in there in a long time. The bookmark popped out today. The bookmark reads:

HOPE

HOPE is just a small word
Unassuming and gentle.
BUT
It is stronger than death;
For importance is not measured in size.
Our HOPE is sure;an anchor
That does not waver.
In the gales of grief;
A kite that soars beyond pain.
To the Father of lights-The Author of HOPE.

PRAISES FOR TODAY!!!


SATURDAY UPDATE:

I will try to update Taylor's site again. At the moment we are still at the hospital. The doctor is allowing us to go home today. Yesterday was probably one of the hardest days we have ever had in our lives. We thought we were going into surgery at 11:00 yesterday, but Taylor's platelets were not high enough and the neurosurgeons did not want to take her into surgery. She received blood and platelets yesterday. They had hoped her platelets would reach the minimum level of 100,000 but after the transfusion they were only at 78,000. The biggest complication in this surgery is bleeding. They didn't think that they would be able to get the bleeding stopped which as you know would probably be fatal. Even if they give her more platelets they are not her own and her body is not able to make her own sufficiently.

We spent all night Thursday night preparing for surgery. Taylor endured many tests including a MRI, CT, Xray, PFT, an artery stick which was very painful, blood and platelet transfusions and many doctors and nurses, respiratory therapists poking her. She has been wonderful through all of this. Everyone has commented on how sweet she has been. This is normally not the case. She is still very fiesty, but she has not been giving everyone her typical attitude which is.....touch me and I'll shoot you attitude. She did give the respiratory therapist a very hard time yesterday and totally intimidated her. She told her she didn't know what she was doing (she was new) and that she was doing the test wrong. The poor lady had to go get her supervisor three times to help with the test. She was very sweet, but it was funny to see Taylor get the best of her. I love to see her fiesty as I believe her will has gotten her to this point.

We had three different neurosurgeon consulations yesterday and they were all afraid to do surgery. They are afraid they will do more harm than good. They fear that if they remove some of the tumor the vertebra will collapse. Her L4 and L5 vertebra are pretty much destroyed. The tumor is growing posterior to the L5 vertebra into the S1 nerve which has caused her to loose most of the function in her right leg. We have seen the MRI and the tumor has almost completely compressed the nerve on one side and it will continue to grow and compress the other side as well. That would cause her to loose function on her left leg. Basically we are in the middle of a really bad situation. There are no good solutions. They also did not want to do surgery due to her lung function being only 50 percent. They didn't know if she would come out of anesthesia without a trach. Her heart rate is also abnormal.

Yesterday we had hope one moment and then no hope the next moment all day long. We waited all day to see the neurosurgeons as they were seeing us in between operations. Taylor was not able to eat this whole time because we did not know if she was going into surgery or not. She had not eaten since 11:00 p.m. Thursday night and at 6:00 p.m. last night we told them we could not wait anymore for them to tell us anything differently as she was completely famished. All of the neurosurgeons have been wonderful and have all gone out of their way to try and help us. Dr. Balis came back to see us about 8:00 pm last night and reinterated everything he had been telling us along with the other surgeons. He is going to consult with another doctor and we are supposed to call him back on Tuesday to see if they have any other ideas to help Taylor.

In our discussion with Dr. Balis last night we told him that Taylor was on Prednisone for 14 days and Monday was her last dose. On Tuesday she rapidly went down hill since going off of the steroids. The Prednisone was to mainly keep her lungs in check and keep her counts up so that she could tolerate the chemo. However, it was also keeping the swelling down on the tumor. Once she went off the tumor just took it's course. This disease is ruthless and is just waiting for it's time to take over.

We are going home for today. They are putting Taylor on Decadron which is another steroid they use for tumors in cancer patients. Hopefully it will control the swelling but we don't know. We talked about many things and they also mentioned giving her an epidural which would numb the nerves that are being compressed. They can manipulate epidurals so that she might be able to walk without pain but we don't know. The morphine is keeping her pain under control but she is in and out and last night she was talking to me with her eyes open but nothing made sense. She was crying and saying all kinds of things. I know that the morphine is causing all of this.

It is so devastating to see her loose her leg function and it has gotten worse each day since Tuesday. We had to have the most difficult discussion with her we have ever had to have. We are trying to involve her in the decisions, but I think it is just too much for her now. She wanted to have the surgery as she said mommy I can't just sit her and do nothing knowing that the tumor is growing and what is going to happen to me. She was very upset that surgery didn't happen as she knew that might be her only hope. The surgery would have only been a temporary solution as she has so much disease in her lungs and pelvic area.

We are praying and hoping for a miracle. I am praying that she will be able to celebrate her birthday on the 28th with her sister Jordan. The timing of all of this has been so hard knowing that their birthday is approaching as well as Halloween. The girl's start planning their birthday party six months in advance so it is quite a big event for them. They have always done that. Halloween is the girl's favorite holiday next to Christmas.

Please continue to pray for Taylor's healing and believe in miracles. It is so hard to keep believing in the midst of all of this, but we have nothing left. Each day the tech's write who is going to be your nurse and tech on a marker board in your room. One of the techs always writes spiritual words on the board. I had not even looked at the board until this morning and this is what it says.

You will never know that faith in prayer is all you need, until it's all you have left.

Thank you everyone for checking on us and calling and being there for us. If I haven't called you back yet, I will. We tried to spend as much quality time with Taylor yesterday as we could as we didn't know if that would be the last time we would see her prior to going to surgery. I just wasn't ready for this moment and will never be. Although we have been blessed to have Taylor much longer than anyone ever thought, it is still not enough time.

Thank you everyone for all your love.

Friday, October 13, 2006 8:27 PM CDT

I had typed this very long detailed entry and I lost the whole thing as I am on a lap top at the hospital and I lost the connection. I will try and update tomorrow. We did not have surgery as expected due to many complications. We may go home tomorrow morning but we don't know. We don't know if Taylor is going to have surgery at all, but we are going to revisit it Tuesday. Taylor is resting comfortably at this time. The morphine has been keeping her pain under control.

Many things happened today and I will try and fill in the details tomorrow.

Please pray for Taylor's healing and comfort. Thank you so much for continuing to pray for us and embrace us on this difficult journey.

Mary Kay, Cary, Taylor and Jordan

Friday, October 13, 2006 9:18 AM CDT

The past 24 hours have been a whirlwind. I don't know how much time we have right now so I can't really elaborate. Basically we are going into surgery within the next hour or so. The tumor on Taylor's spine is pressing on many nerves which is affecting her ability to walk. Things progressed literally overnight. We have been told all the horrible things that can go wrong which are all very scary. We are going to focus on prayer and being positive for Taylor. They are going to try and remove most of the tumor that is pressing on her nerves that they can. If we don't do the surgerry, the tumor will take away her ability to walk among many other organ functions. I will update later today as I want to spend as much time as we can with Taylor right now.

Please pray that the surgery is a success. Pray for God to be with the surgeons. Pray that Taylor's lungs recover from surgery. Pray that there is not extensive bleeding. Pray for our family. We will probably be in ICU at least tonight and hopefully come back to the cancer unit tomorrow. (Did I really say that...) I can't tell you how much knowing that everyone is praying for us comforts us.

Surgery should happen around 11:00 and last from 3-6 hours.

Wednesday, October 11, 2006 5:08 PM CDT

Please keep Taylor and our family in your prayers. Taylor has been having some pains in her legs, hip and back on and off for about two weeks now. I had hoped it was from chemo or low platelets, but everything in me told me that it was none of these things. Unfortunately, Taylor had a really bad night last night and we took her to the hospital today where they ordered an immediate MRI of the spine. The MRI confirmed that the tumor continues to grow and is affecting her in many ways as it involves many nerves as well as the spinal cord.

We are meeting with the radiology oncologist tomorrow for the third time to possibly consider immediate radiation to her spine. We were told last month that Taylor could not receive any more radiation as she had already gotten the maximum dose, but we may have to take our chances at this point. We are also contacting a neurosurgeon as well. We don't know if either can help us, but we are going to talk to them to see if they can offer her any immediate relief. Taylor was able to come home tonight on morphine for pain control. Obviously we are devastated and don't know what is going to happen. I will try and update as we find out more but in the mean time please pray for Taylor.

Thank you so much for all your love and support for our family.

Saturday, October 7, 2006 11:21 AM CDT

Well another week has gone by. I don't know where the time goes. Taylor had some good days this week and some bad days this past week. Last weekend her back started hurting which was very upsetting and scary considering her disease is present on her spine. I was really worried about her for several days, (more than usual). Fortunately, she started feeling better around Wednesday and seems to be doing better. Most of the side affects from the chemo have resolved which is good. She is due for another round week after next so we will enjoy these few days we have of her feeling good.

The Prednisone has definately made her extremely fiesty which is good. She has to take that for three more days. The good thing about Prednisone is that it keeps her counts up and keeps her feeling energetic. If she wasn't on the Prednisone, I'm sure she would have felt pretty yucky. Her platelets have remained around 30, but I'm sure as soon as she goes off she will need platelets next week. The bad side about Prednisone is if she gets angry, just stay clear. Also don't get in the way of food for a kid on steroids. We have to honor those food cravings no matter what they are or what time they occur. We just try to laugh about it.

We are starting to plan the girl's birthday party which is on the 28th. I can't believe it is October already and the girls are going to be 12. The girls got "Booed" last night. It was so much fun for them and me when someone does that. I am sure most of you know what that means, but for those who don't it means someone leaves a halloween gift of some sort on your front porch anonymously. They ring the doorbell and run. The girls are excited about "Booing" someone else.

Well I have to go as I have been instructed by Princess Taylor that my weekend is booked and planned so I must fulfill by duties or pay the consequences. I would much rather see her fiesty than not feeling well so we will enjoy this time.

I moved the fundraiser flyer to the photo page (click below) for Taylor on October 21st to help with medical costs. Thank you so much everyone for all your support. We appreciate it so much.

Please continue to pray for Taylor's complete healing.

Sunday, October 1, 2006 6:44 AM CDT

Sorry I haven't updated but things have been very busy. We went to the hospital on Tuesday for the new protocol. We got there around 9:30 a.m., but we didn't get started on chemo until midnight. Yes, it was one of those yucky days. We had to wait for a discharge in order to be able to go upstairs which I totally understand. However, when we got upstairs we found out that Taylor had to be hydrated until her gravity was a certain level. I'm thinking why didn't we do that downstairs since we were there for 7 hours. Taylor hasn't had to the hydrated on the past several protocols so I didn't ask that question. I just wish someone would have told us that while we were downstairs doing nothing for 7 hours. Needless to say Taylor was hysterical by the time she got chemo. She just wanted to get it over with and was afraid that she might have a reaction and didn't know what to expect. I takes all my energy to keep her calmed down and her spirits up. She had to take three Prednisone pills between 8:00 p.m. and midnight as she has to have three pills a day and we didn't start getting the pills until 8:00 p.m. If you have ever had a kid on steroids you can imagine how fun that was. I'll just say if she had a weapon it would have been ugly. I'm glad I made it out alive......I'm Taylor's biggest target at times, but that's ok. She has to get her aggressions out some how. You know at the fair where you try to shoot the duck and it is going back and forth trying to dodge the bullets....that is me. smile Ding, Ding, Ding

Taylor's brain scan was clear so at least we got some good news. It did show that she has some sinus issues which is where the headaches are coming from.

I reluctantly gave her the Thalidamide as I just am scared to death of that drug. I know it is suppose to have some "good" effects, but I just don't like the whole idea of her taking it. Taylor made it through the infusion with absolutely no reactions at all. She pretty much went to sleep once the infusion started. I watched her during the infusion to make sure she was ok so that went on until 2:00 a.m. I tried to go to sleep, but it is very hard with the nurse coming in and out as well as the tech coming in and out checking her vitals all night. Not to mention me thinking about three years ago today we started chemo and here we are three years later still doing chemo. I'll never forget the first family I met upstairs said this is our son's last treatment and we started in this room exactly 6 months ago. I thought to myself "6 months"!!!??? I can never do this for 6 months. Well looking back 6 months would have been a piece of cake compared to three years with no end in sight.

Taylor was able to come home Wednesday afternoon from the hospital. Unfortunately, she is experiencing some side affects. I guess the Oxilaplatin causes extreme sensitivity to the cold. I had read that about the drug but didn't expect it to affect her immediately. She can't walk across the tile in the house as it hurts her feet due to the tile being cold. The first thing she wanted to do was drink a coke, but it hurt her throat due to the cold. We tried it through a straw, we tried it at room temperature, but it still hurt her throat. Her hands hurt and she is experiencing some neuropathy in them already. I guess the drug over stimulates the nervous system so it is reacting at an enhanced level. The Thalidamide makes her dizzy throughout the day and pretty "loopy" in the morning. She takes it at night so it starts to wear off as the day goes on and she becomes more functional. The Prednisone changes her moods from moment to moment. She is feeling a little better from a few days ago and has been able to drink some juice but it is still hard.

She has to continue to take the Thalidamide and Prednisone for another 9 days......yuck. I feel so bad for Taylor and wish she could stop taking all this medication. It has robbed her of so much over the past three years. She is feeling very sad at times and lost as she puts it. Especially missing so much school this past week. I hope she can go to school some next week. All three of the drugs list dizziness as a side affect so I don't know which one is causing the periodic dizziness.

Some wonderful friends have put together a garage sale for our family to help with medical costs and insurance on October 21st . These moms have lost their children to childhood cancer so they are reaching out to our community to help others who have helped them. That takes some pretty remarkable people to do that and we are so grateful. As always please continue to pray for Taylor's healing and that these drugs will have some effect on the disease. I told my pastor I didn't know what to pray for anymore and he said keep praying for Taylor's complete healing. Sometimes I don't know if I am asking God to do something that is not in his will so how should I pray or what should I pray for. I mean the sun rises at a certain time and sets at a certain time. How can I pray for that to change? I have to continue to pray for Taylor's healing and believe this with all my heart as I know many of you do. I do believe in miracles and I do believe that Taylor is a miracle herself as she has touched peoples hearts all over the world.

This verse stuck out to me today:
Colossians 2:1-5.

I want you to know how much I am struggling for you and for those at Laodicea, and for all who have not met me personally. My purpose is that they may be encouraged in heart and united in love, so that they may have the full riches of complete understanding, in order that they may know the mystery of God, namely, Christ, in who are hidden all the treasures of wisdom and knowledge. I tell you this so that no one may deceive you by find-sounding arguments. For though I am absent from you in body, I am present with you in spirit and delight to see how orderly your are and how firm your faith in Christ is.

Thursday, September 21, 2006 4:09 PM CDT

It is with a heavy heart that I update Taylor's website. Unfortunately, Taylor's scans were not the results we had hoped for. I haven't had the strength to even type those words. Even though the doctors tell you to expect this to happen, you can't comprehend how it will feel until you are there. Basically the chemo was totally uneffective and the disease progressed extensively. I heard this devastating news exactly three years to the day that she was initially admitted to the hospital with back pain. I knew something wasn't quite right as she is losing alot of weight and tiring easily as well as being out of breath. I kept telling myself it was due to trying to go to school and that it was taking alot of energy to do that. Although it is probably somewhat true, ultimately it is the disease taking all her energy. Looking at the picture of her on the website it is hard to believe the internal battle she is fighting. She looks perfectly normal....right?

The doctors finally agreed to put her back on Avastin which she got yesterday. Avastin is not a chemo drug, but I had felt it was significant in keeping her disease at bay along with the chemo. She has always responded to angiogenesis drugs which keep the blood vessels from constricting and growing thus starving tumor growth. Tomorrow she has a MRI of the brain to make sure the disease has not spread to the brain due to daily headaches. If there is not progression to the brain, we are supposed to start another set of drugs next week and we have been told that there are no more options if this doesn't work. Reluctantly we have to try these drugs which have some unpleasant side affects. Kidney failure is one of the scariest side effects, but she will also have to take Prednisone and Thalidamide which I am totally not happy about. The Prednisone will affect her appearance and the Thalidamide will make her sleepy. The chemo drug is ugly and these 2 drugs are supposed to combat some of the side affects. They want to admit her for the first infusion to make sure she can tolerate it. If she tolerates the drug ok we can do it on an outpatient basis. So we tenatively will be admitted Tuesday or Wednesday for chemo.

She will probably loose her little eyelashes and eyebrows that took 3 months to grow. I just hate seeing all the physical things it does to her as well as all the internal things. I also hate that she has to take Prednisone which will cause her to bloat up and make her very sensitive. For some reason in my mind it's not as bad to me if she is not affected outwardly. Maybe because I try to pretend she is ok and try and forget she has cancer. I am worried about her going to school and the kids making fun of her. I know that is petty, but the social aspect of cancer affects her tremendously too. Especially now that she is in middle school.

I have spent all week thinking about my two little perfect girls and all the wonderful memories we have had. Even after three years of cancer and many hardships I still can't believe this is our life. I can only pray for strength to be there for Taylor and be the best mom to the girls. I can only pray for healing for Taylor and love her but it is so heartwrenching to realize that is all I can do. I am so powerless over this cancer monster and I just feel it is so evil. I understand how Job must have felt and I understand how God must have felt to watch his son suffer. I still have hope against all hope and will continue to believe in miracles for Taylor.

Please pray for Taylor's healing and that the brain MRI will be clear. Please pray that she will be able to tolerate the chemo next week. Pray for strength and healing for our family. If you see Taylor or Jordan please just treat her as you would a normal person as that is so important to her. She doesn't want to be treated differently than anyone else. I am only saying this because I know some of her friends at school read this site and I don't want her to feel any less normal than anyone else if that makes sense.

Wednesday, September 13, 2006 10:39 AM CDT

Taylor had a pretty good week last week. Things have been pretty busy lately so I can't remember too much about last week. (that's a good thing). Taylor has been able to go to school everyday over the past week. She has been having alot of headaches lately which is always a concern. I don't know if it is due to all the chemo or what it could be. Nothing has ever shown up on her Brain MRI so I have to hope there is nothing going on there other than long term effects of chemo. She is experiencing another effect from the chemo she is currently on which is causing her teeth to hurt. I have noticed that her two front teeth have been become discolored (yellow) looking. I guess you never know what the chemo is going to do to the body.

We ran off to Disney last weekend to get away from all the stresses we have been facing lately. The girls had a pretty good time although it was pretty hot. As we were walking around in the hot sun, I'm thinking this is the only place you willingly walk around in the hot sun in Florida and are also willing to pay five bucks for a coke......hahaha It's all part of the Disney majic.....smile.

Well back to the reality of chemo and daily life stresses. Taylor has scans tomorrow so please be praying for improvement on her scans. I just found out today that they are scheduled for tomorrow so I haven't had too much time to worry about it....yet. Please continue to pray for Taylor's healing and that things will go smoothly tomorrow. Taylor needs a lot of prayer to help her through this as well as prayer for our family. We have alot of other stresses going on as well. God knows our needs, but please pray for our family. Thank you for all your kind words as we really appreciate everyone hanging in there with us through all of this.

Sunday, September 3, 2006 5:55 PM CDT

Taylor made it through another week of chemo. She had a few days where she didn't feel good, but this week was a little easier than last week. Taylor had to get platelets again on Friday so we were there the better part of the day. She seems to be feeling pretty good this weekend and is enjoying herself.

Hopefully she will have a few weeks off from the hospital other than checking labs. She may need another blood and/or platelet infusion next week, but we don't know for sure. Taylor is due for scans again around the 15th so please be praying for a response from the new chemo regimen. If this regimen is not working, we don't have a Plan B at this time.

I know Taylor and I are both worrying about scans as she told me on the way to the hospital that she had a bad dream about her scans. Basically the results were not good in her dream. I had the same dream the night before. I can tell it is worrying both of us. I try to reassure her that everything is going to be good, but sometimes it is hard.

The saddest news this past week was the loss of another child to cancer. Basically every child that we knew when Taylor started treatment three years ago has either gone into remission and is no longer treating or has unfortunately relapsed and has passed away. It is serile to think we are approaching the three year mark since Taylor was diagnosed. We have made many friends at the hospital and the Children's Cancer Center. The families have either moved on because happily the child has gone into remission or unfortunately the child has lost their battle to cancer.

We experience a loss each time this happens as it feels as though a member of our family is gone. We experience loss even when it is good news and the child is in remission as we miss seeing them. Every mom I felt I had a connection with because they were in similar circumstances has lost their child to cancer. I feel alone sometimes with our situation, but I know we are not. I can only praise God for everyday he gives us with Taylor and pray for those moms.

Please pray for all the families who have lost their children to childhood cancer. We have lost so many friends due to these diseases that I have lost count. It is especially traumatic for Taylor as she sees children in similar situations loose their battles. How do I explain this to her over and over. These kids were all so wonderful and angels on earth. I don't understand their untimely departure from this world, but I know God has a plan.

Taylor asked me alot of questions last week about dying and all kinds of questions about heaven. I answered them the best I knew how but I'll admit it is hard to talk to your child about this when you know they are questioning their own mortality. I told her God has a bigger plan than what we can understand and everything happens for a reason. She said God knew I was going to get sick so why did he allow me to have to go through all of this pain. I tried to explain how Jesus suffered here on earth and that our physical bodies are flawed and temporary, but our spiritual bodies go on to live in heaven and that God does not cause sickness. God works through heartache and pain to reach our hearts.

Please pray for our friend James and his family. We will miss him so much. Please pray for Taylor and that she will be comforted and know how much God loves her. Pray for Taylor's upcoming scans to be improved. Hug and Love Your Children EveryDay as if it is their last.

Tuesday, August 29, 2006 12:31 AM CDT

Taylor made it through last weeks chemo regimen. She was feeling pretty bad on Thursday and ran a low grade fever when we went to the hospital. Needless to say she was upset as she thought her temperature would continue to rise to 100.5 which is an automatic admission. Fortunately, that did not happen. Last week turned out to be harder than we anticipated. Especially when we had to increase her dose of Temodar which immediately caused her counts to drop.

When we went in on Friday I was surprised to see how low her platelets and hemoglobin had dropped. She was right on the borderline for blood and platelets. Rather than risk it and try and go through the weekend, she got a blood transfusion and platelet transfusion. We knew that her counts would go nowhere but down so I'm glad she got transfused. We ended up being at the hospital all day, but I would rather do that than her feel bad over the weekend.

Taylor felt great on Saturday due to the blood transfusion. It is amazing what a difference that makes for her. Fortunately, Taylor was able to go to school yesterday for a half day and most of today. I'm not sure how she will feel the rest of the week, but hopefully things won't be as bad this week as last.

I watch all the educational medical shows on TV as I always find them so fascinating. Last night I watched a story called "A New Face for Marlie". It was about a little girl who had a rare genetic disorder which caused the bones on her face to grow abnormally out of control. There was a huge growth on her face. The growth was so large that it weighed 16 pounds on her face and was sufficating her. After years of dealing with this disorder everyone had given up on her and believed she would die. Fortunately these two ladies who were nurses and also twin sisters found a doctor in Miami to help her. What was so amazing about the story was her mother's faith as well as the nurses that were twin sisters. The mother prayed and prayed for her daughter and never gave up. God answered her prayers.

Sometimes I get discouraged like this morning on the way to class when the thought creeped into my head that there is not anything that can stop this disease from growing. Even if the chemo is working to keep the disease at bay, it is probably still there. I'm not trying to be negative, but we have tried so many different drugs for Taylor's disease and it is still there after three years of treatment. I just wish those Ewing's cells would give up and die. The cells have such a long memory that they keep outsmarting the chemo and continue to thrive even when the chemo destroys all the regular cells. I then remembered the story about Marlie and her mother's faith. I want to be more like Marlie's mom and believe in a cure for Taylor. I have to.

This morning in class my professor was talking about some medical mumbo jumbo and all of a sudden calls my name. Although he was explaining feedback systems in the body he uses an analogy and in the analogy he says, "So Mary Kay the system you are using is just not working for you"......what do you do and how do you respond". Ok, he says this in front of the whole class and I had to respond. Even though he was discussing something totally different from what was going on in my head this morning I know God was using him to say that to me. Talk about a wake up call. It definately got my attention....as I almost fell out of my chair.

Psalm 107:20 says that you sent your word and healed them. Lord, you bless all who call upon you in truth. Send your Holy Spirit to guide me through scripture so that I may understand the truth of your healing promises.

Please continue to pray for Taylor's healing and tolerance of the chemo. Please continue to pray for strength and guidance and that the the chemo is working for Taylor.

Tuesday, August 22, 2006 7:33 PM CDT

Taylor had a pretty good week last week although she did have a few days where she didn't feel very well. She started chemo again yesterday and it seemed to be a lot harder on her this time than the first round of the new protocol. We got to the hospital very early on Monday, but didn't get home until 2:00 and by then she was feeling very tired and her tummy was very upset so she didn't make it to school yesterday. She said she felt horrible this morning, but we had to get to the hospital early again today because they had school pictures this afternoon and she wanted to get her picture taken. Well she felt pretty yucky and we didn't get home from the hospital until noon. I let her sleep a few hours and then took her to school for the last hour of the day so she could get her picture taken. She seemed to feel much better after getting in a couple of hours of sleep.

It was hard going back to the hospital after not having to go for almost two weeks. It is so easy to become removed from that world when you don't have to go two or three times a week. My stomach immediately started hurting and bothering me as the environment just gets to me. I just hate to hear all the kids crying and screaming all around us as well as watching Taylor get her port accessed. Yesterday when she was accessed the needle clotted so the nurse had to deaccess her and reaccess the other side of the port. That is one of the worse things to see her have to go through.

Tonight I was freaking out as I just discovered tonight that she was given the wrong dose of one of the drugs she takes by mouth at home on this regimen. When we started this new protocol last month, the hospital called in three different prescriptions and Cary picked them up as the girls and I were in Oklahoma. Well we got back on Saturday and started the new regimen on Monday. There were two bottles of Temodor. I thought it was odd that they put them in two bottles, but just figured that they were split up because we are supposed to give her one pill for 5 days with a two day break on the weekend and start up again the next Monday for five days.

I gave her one pill a day for five days from one bottle and one pill a day from the other bottle the next week. I never thought anything about it and neither did Cary. Well I called in the refill this weekend and picked up the prescription on Sunday. I didn't realize until I got home that they only gave me one bottle which had 5 pills in it as I had another prescription to pick for Taylor as well. I called the pharmacy and told them that we were supposed to get 10 pills as she takes one pill for a total of 10 days. They checked and said yes you are right and told me to pick up the rest. Well I didn't think anything of it and was not in any hurry as I had enough for this week so I wasn't worried about it. I went by the pharmacy tonight and picked up the second bottle. I asked them when they scanned the barcode why did I have to pay a second copay for another 5 pills of the same prescription. That was when I found out that the reason was there are two different doses in each bottle and I was to give her one pill from EACH bottle everyday. I guess they don't make a dose in 120 mg and so the pharmacy filled the script with one pill being 100 mg and one pill being 20 mg. I didn't realize she was to take a total of 120 mg a day.

I was very upset as she went through one complete cycle of this new regimen and I was giving her the wrong dose everyday. I just gave her one pill each day for 10 days. So one week she got the 100 mg pill and the second week she got the 20 mg pill. It never dawned on me that there were two different doses in each bottle and the pharmacy didn't say anything when Cary picked up the original prescription in July. There should have been 10 pills in each bottle for the two week dose rather than 5 pills in each bottle. If I hadn't asked them why I had to pay a second copay I don't think I would have realized it this time as I had no idea it was filled that way. I guess there was a miscommunication as to how the pharmacy interpreted how to break down the milligrams as well as me not having any clue that it was done this way and that she was to get 120 mg a day. I just wish the pharmacy would have pointed that out to us in July. I started to cry on the way home as I'm thinking that she went through two weeks of this regimen and it probably didn't do what it was supposed to do because she was taking the wrong dose as chemo is very dose specific. I guess I have learned to verify the milligrams on the bottles and compare them to the way the protocol consent form is written. I have learned another very difficult medical lesson as a cancer mom.

I can't go back and fix it, but I thank God that I had that nudge to go get that second bottle tonight and ask them why I had another copay. I just had to pray about it and turn it over to God as I am continually reminded that many things are not in my control. If I think about it too much I will fall apart about it.

Please continue to pray for Taylor's healing and tolerance during this regimen. She is struggling more this time than the last as well as having to try and keep up with middle school. Please pray for peace regarding the situation on the medication as it is going to haunt me for a while especially if Taylor's next scans are not good. This is where alot of faith has to come in as that is truly the only thing that gets us through.

Sunday, August 13, 2006 1:21 PM CDT

Fully Rely On God.....Fully Rely On God.....FROG......FROG......FROG

I find myself repeating these words over and over again many times a day. Taylor had a pretty good week last week. She was able to go to school everyday last week and we only had to go to the hospital on Monday to check counts. She did experience some severe abdominal cramping each morning, but she has felt great this weekend. Taylor has this week off as well and she is very excited about not having to go to the hospital and being able to focus on school.

The girls seem to be adjusting to middle school pretty well so far. We went to the parents open house night and you go from class to class every 20 minutes. I was overwhelmed with each teacher's requirements and was worrying about how are we going to handle this when Taylor has to go to the hospital everyday again starting the 21st. That's when I have to start repeating the FROG words in my head over and over. I asked the girls if they were overwhelmed and of course they said no so I guess I'll stop worrying about all the adjustments. I am very glad that the girls are in the same classes this year and I can already see them helping each other studying for quizzes. The girls have never been in the same class together and they say it feels wierd, but they both are happy about it too.

Things seem wierd with the girls gone all day and I don't know quite what to do with myself. That leaves too much time to worry about what happens next. I find myself saying ok we have 5 more weeks before they are going to want to do scans again. This week will reduce to 4 weeks before we have to have scans. The plan was to do two rounds of this chemo and see if she is responding. It is so hard to stay in the now and not worry about what happens tomorrow, but I have to fight it everyday. Taylor looks great on the outside today and you would never know anything is going on inside. I guess thats why I hate scans so much as it reveals what is going on inside and right now she appears to be great and I don't want to know any different. I try to think of this when trying to Fully Rely On God. He sees us on the inside and we can't hide behind our outsides. God knows the good, bad and ugly and still loves us no matter what.

Please continue to pray for Taylor's healing and that we continue to replace fear with faith. God has performed so many miracles in our lives and Taylor's. We will continue to remain thankful and praiseful for everyday we have with the girls.

Friday, August 4, 2006 1:26 PM CDT

The girls started middle school yesterday and things seem to be going well so far. The picture today was taken of them yesterday before they left to go to school. Roxie thought it was her first day of school too. Taylor was able to go to school yesterday until I picked her up around 2:00 to go to the hospital. Their school days are very long this year so it doesn't give alot of flexibility to try and work in the hospital and allow Taylor to go to a full day of school. We took her to the hospital very early this morning to get her final infusion of her two week protocol. She will have a two week break and then back to the two week everyday protocol. We will have to go to the hospital once or twice a week for labs, but so far her counts have not dropped to a transfusion level thus far.

Taylor was very anxious to get to school today so she wouldn't miss too much. She is very excited to have a cooking class included in her school schedule this year as she loves to cook. I am very grateful she was able to attend her first few days of school and we will just have to take things a day at a time. Taylor was scolded twice yesterday and told she would have to take off her bandana until she told them she had a medical reason for wearing it. The people didn't realize that she was wearing a wig as the hair piece she wears is real hair and people don't realize it's a wig. I had another cancer mom tell me a month ago that this happened to her daughter when she started middle school so I wasn't surprised. I told Taylor not to worry about it and no one meant any harm. I think it's great when people can't tell that she is a cancer patient and so does she as she does not like to draw attention and just wants to be looked at normally. Well not too much more to update today which is a good thing. Taylor has not had any nose bleeds since last weekend and she is not limping at all. Praise God.

Please continue to pray for Taylor's healing and that the chemo will destroy the cancer cells. Please continue to keep Taylor and Jordan in your prayers as they face the challenges of middle school and Taylor being able to attend school as much as possible.

Monday, July 31, 2006 6:27 PM CDT

Taylor made it through the first week of the new protocol and we are on week two this week. It is hard for her going to the hospital everyday, but she is grateful to come home to her own bed every night. So far she seems to be tolerating it pretty well. Her platelet count has dropped from 71 to 49, but that is still good for her. Unfortunately, we dealt with nose bleeds this weekend alot, but she has not had one today. The chemo has not affected her as harshly as the other protocols so far, but we have four more days left of this protocol so it might affect her more. Maybe this chemo will work better for her meaning getting something everyday for two weeks might be better than getting something once every 5 weeks to fight her disease. She was not able to recover in time to receive the other protocol every 3 weeks because she has had so much. Not getting the chemo on time definitely affects the effectiveness. Hopefully she can receive this chemo on time because it doesn't suppress her counts as much and have a little better quality of life. She is supposed to have the next two weeks off from chemo after this week. She will still have to go to the hospital for labs, but probably only once or twice a week.

The girls are excited and nervous about starting school this week. Taylor is intending on going to school most of the day Thursday and Friday. We will have to fit in her infusion at the hospital on both of those days. Their school schedule this year will be harder to work with since they go from 9:00-4:00. In elementary school they got out at 2:15 so we still would have plenty of time to run to the hospital before 5:00 if we had a short infusion. Well this year we will have to pull her out early, but I'm sure it will all work out.

Taylor had a pretty good weekend and swam as much as she could tolerate since her port was deaccessed on Friday. We had to make a deal with her to take her to Disney's Blizzard Beach this weekend to get her through the chemo last week. We were able to go yesterday and she did really well. We rode almost all the water slides. It was very crowded so some lines were just too long, but we made it through most of them. I am always amazed to see all the "thong" bathing suits at the Disney waterparks. I'm never surprised to see them at the beach, but for some reason it always cracks me up at the family water park. We saw some pretty scary sights yesterday and I'm not talking about the slides. hahaha I just wanted to say "but Mickey Mouse is here"......haha Taylor thanked us over and over again for taking her. We were nervous about taking her because of all the physical limitations she might have experienced, but she did great and had no problems.

Taylor's cough is still hanging on, but it seems to be getting better. She has not been limping this week either so that's always a good sign. Please continue to pray for Taylor's healing and that the chemo will be effective. Pray for her to be able to attend school and have very little side effects from the chemo.

Wednesday, July 26, 2006 7:34 AM CDT

I just wanted to give an update on how this week is going with Taylor's treatment on her new protocol. It was very hard for me and the girls to go back to the hospital today for treatment but we knew we had to do it. Monday morning when Taylor got up she seemed ok but then suddenly she became sick. Of course I was freaking out as this was one of her symptoms of her disease when she was first diagnosed. She had been displaying all the "signs", extreme fatigue, moodiness, limping and now getting sick. I immediately called the nurse to make sure we were going to see the doctor prior to beginning the protocol as I wanted to speak to them about the outward signs she has been displaying.

However, I did notice that on Sunday her limp had seemed to get better suddenly. On Monday it was completely gone! I talked to the doctor and was told there was some progression of disease at L5 on her vertebra. It is growing inside the epideral area as it was before. It has some nerve involvement which is why she may have been limping for a few days and having unexplained pains here and there with no consistency. I already knew something was going on so I wasn't surprised with the MRI results. The doctor had Taylor walk down the hall to evaluate her limp which was not there anymore. Looks pretty normal to me the doctor said. We discussed possibly doing radiation again to that area, but the radiology oncologist will have to evaluate this before we can make any decisions.

When we got Taylor's labs back her hemoglobin was only 8.0. That is very unusual for her at 5 weeks out from chemo to only be at 8.0 and we have not seen this happen with her before. Normal is 12.0-15.0. She was also coughing alot and the doctor gave her another prescription of Predisone. She started coughing uncontrollably after she received Irenotecan (chemo) for several minutes. Finally she seemed to be ok to head home. When we got home I had to give her Temodor (chemo) orally and was terrified. This was the drug that had made her so sick two years ago that she couldn't tolerate it. However, at that time we didn't know it was going to have such a grave effect and didn't have any antinausea med at home to give her. I gave her the drug and she had no side effects so far. Even though she has had all these drugs prior she has not received them together. Receiving these drugs together has been shown to be effective in some Ewing's patients.

The good news is through all of this is that they give her an antinausea drug which lasts 24 hours everyday. The antibiotic she is on kills the flora which causes diarrhea so she has not had any so far. They didn't use this two years ago when she was on it so it had that effect then. The Predinosone is working great this time and her coughing has diminished considerably. She received blood yesterday along with chemo so she is feeling so much better.
She has done a 180 degree turnaround over the past few days. She is very fiesty thanks to the Prednisone, which I like to see. We are going to try everything we can to get her to the first day of school next week. I'm not sure how she will feel then as she may be more effected by the cumulative amount by then but we will take it day by day.

I just wanted to share some good news in all of this. I feel God has answered alot of prayers this week and I thank you all for praying for Taylor. I have been reading alot of spiritual books lately trying to redirect my mind to focus on God and not the worldly way of thinking as it has been destroying my hope. I sat on the porch Monday night and looked at how green our lawn is. We had to bring the lawn back when we moved here in January as it had almost died due to lack of water and nourishment. It is just about the greeniest lawn on the block now. We have been fertilizing it and giving it alot of extra care to get it this way. I looked at the lawns across the street and see that the lawns are green, but they are a pale green and just sitting there existing as they are not getting any nourishment along with some weeds trying to take over. There getting lots of water now due to the rainy season, but not any nourishment. I realized that is how I have been living; just getting by but not flourishing. It is easy to slip into this mode, but reading God's word everyday is the only thing that brings us that nourishment. So many weeds have slipped into our life, but we have to keep the hope and focus on God.

I realized that we just can't rely or depend on pure medical science. While we try everything we can to help Taylor this way, we just never know if it is going to work. We can only rely on God no matter what happens. I know Taylor can wake up anyday with that limp or they may tell us that the chemo isn't working, but I can't focus on that. For today and just today I know God is healing Taylor whether it be on earth or in heaven. If you saw her today you would not believe she was the same girl I was seeing over the past week. I can only equate that to prayer as chemo doesn't work overnight.

Please continue to pray for Taylor's healing and guidance in her treatment plan. Pray for her lungs to continue to heal, the chemo to be effective, the limp to not return and most importantly that we can get her to the first couple of days of school next week.

Sunday, July 23, 2006 8:02 PM CDT

Well traveling Taylor is back in Tampa. We flew in last night and arrived around 11:00 p.m. Taylor had a pretty good week despite the trip to the E.R. while we were there. The weather was so hot so it was hard to do much other than see family, go to the mall and see movies. Taylor took it pretty easy last week; sleeping in everyday until around noon. It almost reached 110 degrees in Tulsa on Thursday. I just don't remember it ever being that hot when we lived there.

Taylor started feeling much better around the earlier part of the week, but on Thursday she started coughing again and she is very fatigued. Her cough never really went away, but it seemed like she was getting better and then she started going the other way on Thursday. I am very concerned about her as she has been sleeping about 10 to 12 hours a night and all she wants to do is go to sleep. She started limping again which really upsets me. I noticed that she was beginning to limp a little early in the week.

I went to see a friend on Wednesday in Wichita and came back on Thursday. When I walked into my inlaws house after not seeing Taylor for two days I was very upset to see how pronounced her limping was. She has a tumor in her left iliac area and whenever she starts limping it tells me the tumor is growing. I'm not trying to be negative, but experience tells me something is not right. I was upset because I feel the drug Avastin was keeping the tumor from growing, but she was taken off of it about 6 weeks ago and now she is limping. They would not give the drug to her because of her pulmonary issues. I asked for it every week, but they would not give it to her. I know they are trying to keep her best interests in mind, but I feel helpless and that I have let her down in some way and should have pushed harder for her to get the Avastin. Nothing has changed in her protocol in a year up to this point. The only change was taking away the Avastin. I am going to talk to them about this tomorrow, but she is still coughing and they are changing her protocol so I don't think they will incorporate it as I am sure they want to see how the two new drugs affect her before they would add anything else. I don't know if they will give her chemo if she is still coughing tomorrow. She has not had any fever with any of this, but nothing we do seems to help her coughing.

The new chemo is supposed to be outpatient everyday for the next two weeks. I don't know how she is going to tolerate it and if she will qualify tomorrow or not. Unfortunately, there are some pretty bad side affects so I am very nervous. She was on one of the drugs two years ago and seemed to tolerate it ok, but it usually causes fever and severe diarrhea. She will have to take an antibiotic to prevent a bacteria infection due to this. The other drug is by mouth and we tried to give it to her at home two years ago and she threw up for 24 hours straight after taking one dose. She is supposed to take it for 10 days so I am not sure she can tolerate any of this.

I was very surprised I was so sad to leave Oklahoma yesterday as it has not affected me like this in the past. I think because I knew we had to come back to our cancer world and all that Taylor will have to face. It was very nice to be 1400 miles away from the hospital and thus feeling like we had some normalcy for a while. Taylor wore her wig the whole time we were in Oklahoma which she never wears here. I think she wanted to feel normal too and pretend that there was no cancer. I was very emotional yesterday and crying. I did not tell Taylor about the new protocol until today as I didn't want her to worry about that while we were there so that was weighing heavy on my mind. I was very upset that school is starting August 3rd here and I have to tell her about more chemo and that it will probably affect her being able to go to the first day of school. Taylor told me a few months ago that she wanted to be able to go to school at least the first three days I don't know if this is going to be possible for her. I had a long talk with God yesterday and telling him I just don't understand why she has to deal with this and how am I going to break this to her. I am at a loss as to why this is happening. The girls are very excited about starting school, but we have to throw chemo into the mix and all the side effects. I just prayed for God to show me the unseen and not the seen.

I decided to go by the cemetary yesterday before I left to see my brother and granny. I hadn't been to the cemetary in 5 years and wasn't sure if I could remember where they were. I just decided to go yesterday on the spur of the moment and didn't tell anyone I was going. The cemetary is very large and I drove in and all I could remember is that they were by a pond. I drove around a little while and I said ok God I give up. I can't remember where they are so I am going to leave. He must have know how important it was for me as I turned the car around and went to a spot close to this pond. Something said "park here". I got out of the car and started to walk to where I thought they might be. I had my eyes on an area that was pretty far away. Something said "look down". I was standing right over my brother's resting place. I literally parked the car and walked directly to the spot not even having to walk around or search and not even knowing where I was supposed to walk. At that moment I realized God is really listening to me and guiding me even when I feel lost. I thanked God for getting me there and was able to spend some time there. I kept thinking about that all day and how amazing that was. I had a very strong sense of peace once I left that I haven't had for a while. Today however I was getting sick to my stomach today worrying about tomorrow and I looked outside and there was a full circle rainbow over our house. I took Taylor outside to see the rainbow too and told her that was God's way of letting us know he is with us. I reminded myself to give it all to God as he will guide us when we are lost and don't know why we are going there.

Please continue to pray for Taylor over these next few weeks as they are going to be tough. Pray for Jordan too as it is very hard on her to see her sister go through all of this. Please pray for Taylor's lungs to heal and that the tumor stays under control in her iliac area. Please pray for God's presence to comfort all of us as we continue to have to make difficult decisions in Taylor's treatment. I finally changed the home page picture which was taken over Memorial Day weekend. Taylor is driving Uncle Kevin's boat. As you can see she took it pretty seriously. I loaded a few pictures from her Seattle trip as well.

Tuesday, July 18, 2006 2:11 PM CDT

Well you are probably wondering where is Taylor this week. We are actually in Oklahoma this week. This has been a wish of Taylor's since she got diagnosed. We have not been able to bring her to Oklahoma for three years. We are from Oklahoma and the girl's cousins are here along with their grandparents. All I have to say is that it is hot here! I didn't think any place was hotter than Florida, but I was wrong. It has been 105 degrees here every day so needless to say it is about 10 to 15 degrees hotter than Tampa. There has not been a cloud in the sky since we have been here so it is hard to deal with the heat.

Taylor is having a pretty good time. We started the visit off pretty rough as we already have had a trip to the Emergency Room. Taylor got sick while she was in Seattle due to the drastic climate change from Tampa to Seattle. She came home last Wednesday night and then off to the hospital Thursday all day. She had her MRI of her spine which I have not called to get the results yet. I'm sure I'll know soon enough. She also had a chest xray to make sure she didn't have any signs of pnemonia as she had developed that bad cough again. She also had labs done on Thursday. Dad took her to the hospital so I could pack. I was a little surprised to find out that her hemoglobin was only 8.4. She was almost three weeks out from chemo so it was surprising it was so low.

We thought we were going to miss our flight out as Cary and Taylor were at the hospital and didn't get home until 4:45 and we had a 6:50 p.m. flight out. Well trying to get to the airport in rush hour traffic in Tampa in the rain is not very easy. We got to the airport around 6:20 and got the gate. The flight was delayed due to the weather so we made the flight out of Tampa. We then went to St. Louis and that flight was delayed 2 hours. Needless to say we didn't get to my mom's house until 1:30 am which is 2:30 Tampa time. Taylor didn't know what time zone she was in as she was on Seattle time.

I know the timing was not very good to fly out Thursday night, but Taylor wanted to spend as much time as she could in Oklahoma and I waited until the last minute to book a fight as I wasn't sure she could make the trip and there were not alot of flights available. We just had to make this trip happen for her as we had promised her we would go this summer and this was our last opportunity to go.

On Friday we went to go see the girl's great grandma in Bartlesville which is an hour from Tulsa. We let Taylor sleep in quite late so we thought she might be ok. Trying to fit in all the grandparents and cousin time is hard so we were trying to see everyone. We no sooner walked into my grandma's house and Taylor said she felt awful and needed to go to the hospital as she felt like she needed blood. So we turned around and went back to Tulsa as I wasn't comfortable taking her to the hospital in Bartlesville. Needless to say we spent 6 hours in the E.R. in Tulsa. Taylor received fluids and was diagnosed with Brochitis. Her platelets had dropped to 32 which was also concerning. She has been on a strong antibiotic and is doing 100 percent better today. I think she had such a busy week in Seattle that it took everything out of her. She had an absolutely wonderful time including driving a go-cart and challenging James to a dance off.

We have tried to make it here so many times, but we could never make it due to Taylor's chemo schedule. We just decided we needed to make this happen for her as it was so important for her to see her family. Taylor has alot of memories here and she wanted to experience them again. She started crying at my mom's house when we walked in as my mom has tons of pictures of the girls all over the house. Taylor couldn't bare to look at one picture because it was taken right after she was diagnosed before she lost her hair and it brought back sad memories for her. It would be different if we had moved past cancer, but we haven't. I'll admit it is hard for me too as you look at all the pictures of the girls before Taylor was diagnosed and you can barely tell them apart because they are so identical. I keep wondering how and why did this happen.

Taylor feels 100 percent better and is enjoying herself. I do miss the simplicity of Tulsa. Everything is so much slower here and you can get anywhere in the city within 30 minutes. I went to an 8:15 aerobics class yesterday and there was no traffic to fight. I used to teach aerobics there and take the girls with me to the daycare. I have been wishing for that time back and didn't realize how wonderful life was before cancer. Life is good now it is just that I miss the life we used to have then.

Well we get back in town Saturday and back to the hospital world on Monday. I am supposed to call the clinic tomorrow to find out what the latest chemo plan is going to be. Dr. Tebbi said no to the lung biopsy as I expected due to risking her lung collapsing and/or her not recovering due to all her lung issues. Well we will update when we get back and enjoy our time here. I'm just glad the air conditioner is working.

Please continue to pray for Taylor's healing and guidance in her treatment plan.

Sunday, July 9, 2006 2:52 PM CDT

Things have been pretty quiet the past few days as Taylor is in Seattle having a great time. On Thursday we went by the hospital to have labs done just as a precaution since she was flying from Tampa to Seattle. We were pretty confident that her platelets would be ok so we went on our way to the Children's Cancer Center meeting. Well I guess we were all wrong because Taylor's platelets dropped to 18 so we had to go back Friday morning for her to receive platelets. Needless to say she wasn't too happy about that and was afraid it would interfer with her trip to Seattle. I told her we had plenty of time and not to worry.

We took her to the hotel and dropped her off with the CCC group around 8:00 p.m. Friday night as they had a very early flight out of Tampa Saturday morning. They have the kids come the night before to be closer to the airport. The real reason is probably so the parents can say their good-byes the night before. The car ride home was very quiet as we were already missing her.

Taylor called us last night and said everything was fine and she is having a great time. I am constantly thinking of her and it is so hard with her being so far away, but I know she is in good hands. One of our friend's child was placed in Hospice care over the weekend and it is so hard to to see cancer take over the lives of all these children and families. I am thinking of them constantly as well and my heart aches. We have known five children who have passed away over the past two months so needless to say it is hard to stay strong seeing so many children loose their battles. It is becoming increasing difficult to explain this to Taylor and Jordan, but I do the best I can. I have been having a very hard time coping with going to the hospital all the time and not having an end in sight with treatment. However, I have been very humbled and realized that although we are treating indefinitely, Taylor is relatively functioning and that alone is a gift. God has shown me again to cherish every moment even when some of the moments are difficult.

Please continue to pray for Taylor and guidance in treatment. Please pray for our friend Karyna and her family as they struggle through this difficult time. Pray for all children with childhood cancer and that someday they will find a cure. Taylor comes home Wednesday night and we have her final scan for now on Thursday.

Tuesday, July 4, 2006 6:36 AM CDT

Last week was a whirlwind of hospital visits, scans and doctor appointments. Taylor did receive platelets and blood last Tuesday so we were there most of the day. On Wednesday we went to the ENT doctor for Taylor's nose bleeds which wasn't very helpful. Basically I was given a piece of paper telling me how to stop a nose bleed as if I don't already know how. It wasn't even worth the $35 dollar copay for the appointment. I explained that these nose bleeds had been going on for 3 months and that the oncologists referred us to them to get some help. I was surprised the doctor didn't want to scope her nose to see if there were any blood vessels that were broken and needed to be cauderized. I don't think they had dealt with too many pediatric cancer patients with chronic nose bleeds. We left there feeling frustrated and disappointed. I was told if the nose bleeds continue then they would take the next step. I guess three months worth of nose bleeds wasn't enough for them to be concerned. Sometimes I am amazed at the lack of concern we experience when we try to get help for medical conditions. I just want something to help her.

Friday we went back to the hospital for Taylor's bone scan and MRI of the brain. We got her accessed and then took her over to the diagnostic center where they gave her the bone scan injection which takes three hours to work through the body. We went back to the clinic to find out that Taylor needed platelets again so we had to try and squeeze them in between the bone scan and MRI. Unfortunately, Taylor had a bad reaction to the platelets on Friday. This has happened before, but it has been a while since it had happened. She always gets medicated with tylenol and benadryl prior to getting blood products but for whatever reason she started coughing really bad and having some pain and then her nose started bleeding and she was coughing up blood. I wanted to call that ENT doctor and say.....can you hear me now. Fortunately the nurses gave her some Adavan and hydrocordisone and were able to get her reaction under control. Taylor received as much of the platelets as she could before we had to go back to the diagnostic center for her bone scan and MRI. Fortunately, she slept through the scans due to all the medication so that was a blessing.

I received the CT results on Friday as well which were about what I expected. I don't know how I knew what they were going to be, but I did. Three of the nodules in the lungs doubled in size unfortunately. A few others were stable and one was improved slightly. The tumor on her hip area had improved though so that was good. Basically the response to chemo is mixed which is what we have beeen facing for a long time. The doctor suggested possibly doing a needle biopsy on one of the nodules in the lungs to make sure it isn't fungus since Taylor still has a cough. I'm not sure that we will do that procedure or not. Although I would like to believe it is a fungal infection rather than disease, I know that the chances are slim. I am not trying to be negative, its just we have seen this before. Many times Ewing's forms separate clusters which can become resistant to chemo. When this happened before we had to radiate three other nodules in November and December that had become resistant. I'm not sure the other doctors would agree to do a biopsy of one of the lung nodules either and I don't think they have all sat down to discuss it. I guess they are not going to have a weekly meeting until next week due to the holiday so we probably won't know anything until next week. I just want to make sure all of the doctors would have the same opinion before we go forth with this procedure. I just am afraid that a needle biopsy might "stir" up the cells and cause them to grow even more.

I did get the bone scan results and MRI of the brain yesterday and they were both negative for disease. The biggest issue is the lungs which are very critical. Unfortunately, Taylor's lung function has continued to decrease due to chemo, radiation and disease. I have been searching the internet for anything new or different for Ewing's, but I am not coming up with anything differently that we haven't already done. I put another call into Sloan Kettering, but really the only thing that might help her would probably be a stem cell transplant and since her lung function is so poor it would be very risky and could be fatal. Taylor has had almost 36 months of chemo therapy which also is a negative factor in considering transplant. Many times when they have received so much chemo, the transplant chemo is just too much for a body to handle as we have seen happen to so many kids who have not made it through a transplant. I don't even know if they would consider Taylor for transplant due to her still having condiserable disease present. It's all very complicated and it is hard to know what the right thing to do is when no one else knows either. The problem is there is no right or wrong answer and having to make those decisions are heartwrenching. I don't want Taylor to spend all of her time on earth in the hospital, but I don't want to loose her either. I don't want to be responsible for harming her by taking her through transplant, but I don't want to be responsible for not giving her every chance to live either. Taylor's health has basically made these decisions for us in the past, but I don't know what we will be faced with in the near future.

Taylor was in a great mood yesterday and very happy. It was great to see her feeling so well and being so happy. After crying alot over the weekend I tried to focus on God and prayer and enjoying time with the girls yesterday. Taylor didn't need platelets or blood yesterday so that was exciting. Taylor is leaving on Saturday for Seattle so she is very excited about that. She is going on a reunion trip with the Children's Cancer Center to Seattle. Taylor was able to go skiing February 2005 sponsored by CCC and the Wunsch Family Foundation. They only get to go on this ski trip one time and then they get to attend a reunion trip. There will be kids there from 10 other states across the country that have gone on the ski trip over the past two years. Taylor is going to be in a room with her friend Christina and also Sydney who is from the Tampa area as well. I am a little nervous about her being so far away but they take nurses from the hospital and Dr. Wynn is going so I feel good that he knows her case history. He is the only oncologist going on the trip and there are a total of 69 kids going across the country so we are lucky that he is going with the kids. If anything were to happen while they are gone they have one of the best children's cancer hospitals in Seattle so I know everything will be ok and I would be on the first flight there if I needed to. Taylor is very excited to see all her friends and also her great friend Austin from the Atlanta Falcons.

Taylor comes back on the 12th and we have to go to the hospital on the 13th for her MRI of her spine. Well I hope everyone has a great 4th of july. Please continue to pray for Taylor's healing and guidance in her treatment plan. Please pray that she doesn't have any medical issues on her trip. Thank you for all your love and encouraging words.



I

Monday, June 26, 2006 7:50 PM CDT

Well this past week has been quite busy. The girls went to Kite Camp on Wednesday and Taylor felt ok to go. Wednesday they were going swimming and to Pump It Up. Although Taylor didn't participate in either activity, she was glad to be around other kids and enjoyed herself. I took the girls to camp on Thursday and unfortunately I got a call from Taylor that her nose started bleeding while they were bowling. She was very upset as this darn nosebleed has been going on since April. I was shopping at Bed Bath and Beyond looking for dad a birthday present as his birthday was Saturday. Well I had the cart full of things we needed for the house.....yea right....but I just had to leave everything in the cart and head back to the Children's Cancer Center to pick up Taylor. I'm sure I saved alot of money that way.

I took Taylor to the hospital for labs since she was having a nose bleed. Her platelets weren't quite low enough for a transfusion, but the doctor wanted to give her one anyway because of the nose bleeds. So we went back to the hospital again on Friday and she received platelets. We were able to make the bus at Kite Camp as they went to Game Works on Friday and the girls had a great time. On Saturday Taylor tried to go swimming, but as soon as she got in her nose started bleeding again. She was very upset and had a big meltdown. She is very tired of her life being out of her control due to chemo, all the medication she has to take, the hospital ect. I just let her cry and unload.

Yesterday we went back to the hospital and Taylor was borderline for platelets and blood. She didn't get either yesterday, but we have to go back today to recheck her and we are anticipating her needing both today. Taylor is also due for scans again and she unexpectantly had one last night so we didn't get home until about 8:30. Our insurance is changing again on July 1st so we were trying to get everything in this week.

We got the CT scan done last night and we were supposed to get a MRI of the lumbar spine done last night too, but Taylor was crying alot and just tired so I told them we would just have to try and work it out another time. She had already had to drink the contrast for the CT and then get an injection of contrast for the CT which made her feel pretty sick. Normally she gets a contrast injection for the MRI which she hates as she feels it too and it makes her very hot. In order to try and get all the scans in this week, we were going to have to do the lower spine last night. It takes about 45 minutes per body part sometimes and they just didn't have time to get in all in. The whole spine could take almost 2 hours. Then we were going to have to do upper and middle spine on Thursday at Carrolwood which is in Tampa at 8:30. Well it's an hour away without traffic, but in rush hour we would have had to leave about 6:45 am. to get there on time. We are also scheduled to do an MRI of the brain on Friday along with a bone scan of the whole body. She gets an injection for the bone scan and you have to wait three hours for it to work through the body. So Taylor was going to have to get a contrast injection three different times and go under the MRI three different times. I just decided it was too much and we will have to work out the insurance thing the best we can next week and try and get a MRI of the spine all at once.

She is also supposed to go to a ENT specialist Wednesday afternoon to see if they can scope her nose to see if there is something more going on than the chemo causing the nose bleeds as it has been happening since April. I am sure that is going to be a difficult appointment for her. Taylor hates anyone touching her that she doesn't know and it is very hard to get her through all these scans and appointments. My head was spinning yesterday and I just felt so overwhelmed with all of this and wondering how we were going to get through it all.

I was very concerned doing the CT yesterday as I didn't know if the chemo had enough time to be effective since it had only been 7 days. I was also worried because she has not received Avastin for a month. I am concerned because they will look at the scans and tell us if it's working or not working, but I'm thinking how can they determine this if she hasn't gotten the medication. I guess I'm just plain scared and feel that time is our friend, but I'm so afraid that we are going to run out of it. I'm afraid the hour glass is going to be turned the other way. Each time we get scans it is so difficult to get the results and the window keeps getting smaller each time. I just decided that God is in control and I can't control cancer or when alot of things happen. I am struggling with going to the hospital again today, but I know we will get through it. Jordan is so sweet through all of this and she never complains. I am so glad she has been there with us, but I feel so bad she is having to spend alot of her summer vacation at the hospital too. I want the girls to have a normal life and enjoy themselves. Sometimes I feel so sad that the hospital world is so much a part of our life.

When Taylor had her meltdown she said she just wants to run away from all of this and never come back. She said I don't want to be here anymore mommy. I totally understand how she feels and feel that way sometimes too. I know what she really wants is to have a normal life without all the complications of cancer. I don't have answers to alot of her questions many times, but I try to comfort her the best I can. I am so heartbroken that she has to deal with all of this and I want to make it go away so badly, but I can't. I know this journal entry probably makes no sense and sounds crazy and I know I'm rambling, but I guess it is the only way to get all those crazy thoughts out sometimes.

Please pray for Taylor and Jordan as well as she struggles watching Taylor go through all of this. Pray for Taylor this week as we have a very crazy week ahead of us. Pray for guidance in her treatment plan. Please pray for the scan results to be imporved or stable. The picture this week was taken last week at Kite Camp. As you can see they look like they were having a pretty good time. I am so glad there is a place for the girls to go where the moto is "Kids Should Fly Kites, not Fight Cancer."

What Cancer Cannot Do:

It cannot cripple Love
It cannot shatter Hope
It cannot corrode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot steal Eternal Life
It cannot conquer the Spirit

Tuesday, June 20, 2006 6:27 PM CDT

Well, I know its a miracle.....I was finally able to add some new pictures of our recent trip to Washington D.C. last week.

Taylor barely qualified for chemo yesterday. Her platelets were 74,000 and they are supposed to be 75,000 to qualify, but that was close enough I guess. I'm glad we didn't try to get admitted last Thursday as I heard people were waiting for 8 hours or more to get a bed due to all the kids on the floor. I was determined to get to the hospital early yesterday so we could try and have a reasonable admission time. We made it to the hospital by 8:30 and actually made it to a room by 10:15. Wow, I think that was a record. Not so fast.....we didn't start chemo until 2:45 because we had to wait on the pharmacy to get the drugs mixed. Taylor didn't get upset though while we were waiting. I think it is because Jordan was able to come with us since school is out. Having Jordan with us is a huge blessing.

Unfortunately, Taylor got off to a rough start. She received Carboplatin first and she always gets severe stomach cramping along with vomiting when she receives this drug. She was begging me to stop the medication, which I couldn't so I called the nurse and she temporarily stopped it and gave Taylor some Adavan which helped with the nausea and cramping. I helped Taylor back to her bed from the bathroom and she fell asleep right away. She slept through the 2nd drug and a couple of hours into the third. She rested pretty well last night and woke up this morning feeling ok. Fortunately we were able to leave the hospital around 3:00 p.m. today. She feels pretty rotten right now, but she is glad to be home in her own bed rather than the hospital bed.

Kite Camp is this week through the Children's Cancer Center. Although the girls have missed the first two days, they want to try and go the rest of the week. Taylor is not sure if she will feel up to going or not tomorrow so we will play it by ear. I have to give her GCSF injection at 3:00 p.m. so if she goes I'll have to give her the injection at the center, which I don't want to do but will. I just don't want to interupt the fun atmosphere at camp with a shot, but we will work it out.

We will have to go back to the clinic on Friday for labs to make sure she can make it through the weekend without a transfusion. It's right on the way to Kite Camp so maybe we can get labs done and then go to camp Friday, depending on how she is feeling.

I have done alot of reflecting over this past week thinking about sweet little Jacob. We will miss him so much as well as seeing his family at the hospital. Taylor and I have had many long talks as we have lost many friends to childhood cancer. Remarkably the other night she said, sometimes mommy you just have to let go of the grass. I asked her what that meant and she said, well if you let go of the grass you will fly up to heaven and see the stars. Sometimes we learn the best insights and lessons from our children. Sometimes Taylor says some of the most insightful things and she always says them at the most unexpected moments. I believe God uses our children to speak to us so that we can understand some of the most complex things in the simpliest manner.

Please continue to pray for Taylor's healing and guidance in her treatment. Pray that the nose bleeds won't start again as they have been over the past 2 courses.

Please pray for all children and their families battling childhood cancer.

Thursday, June 15, 2006 2:49 PM CDT

Hello Everyone,

I haven't updated in a while as we just returned from Washington D.C. last night and we have been at the hospital all day. Taylor was supposed to be admitted for chemo today, but her platelets fell a little short so we are going to try again on Monday. The clinic was so crazy today as they had received five new diagnosis this week and they had 20 kids that were to receive chemo today along with all the admissions, kids that needed procedures, and routine doctor visits. The clinic only has five beds so you can imagine the chaos. It is very frustrating to wait all day for counts only to find out that we were not going to be admitted today, but that goes with the territory.

Taylor was very emotional and crying today and saying how she couldn't take it anymore and didn't want to go through chemo and all the side effects it produces for her. I could only hold her and cry with her as we waited for the doctor to make a decision as to whether or not she would receive chemo today. Her platelets were 68,000 and they need to be 75,000 to qualify. Some doctors have admitted us before with that platelet count, but some have not in the past. Today, we were not admitted. As we left, I breathed a sign of relief, but at the same time a sign of worry. The doctors held Avastin last week due to Taylor's respiratory problems and cough. I always worry the disease will get ahead of the treatment if it is not administered on time. I can only place everything in God's hands since I am not in control.

We had a very nice time in Washington D.C., but we were ready to come home. I think we went through security checks one too many times there. We pretty much were able to see most of the highlights of Washington D.C. Our first night we went to a grill the hotel recommended to us. As we wheeled into the restaurant, (we had a wheelchair for Taylor), we found ourselves in a big crowd of people in an environment that was not very wheelchair accessible. It was so crowded I felt like we were in a crowded elevator elbow to elbow. We had not been there 5 minutes when a man came up to us and asked us if we had been helped or had a reservation. I replied no and he took us outside immediately and escorted us outside to a side entrance. They sat us immediately and were very nice. We thanked him for his kindness as we couldn't believe someone had done that for us as there was a hour and a half wait for a table.

After the meal we received the check, gave them the card to pay only to receive the bill back paid in full by the restaurant! We found the manager again and thanked him for his kindness. Taylor hadn't been eating much over the past few weeks and she had just happened to order a sirloin strip as that was the only thing on the menu she would eat so we were very appreciative when they took care of the check. I had the cheeseburger......hahaha We have had the mentality that if there is anything at all she will eat, lets order it. She started eating a little bit better over the past few days, but still very little. She has probably lost about 5 pounds over the past few weeks which is a lot for her since she is already so thin.

We were able to meet many families in Washington who had children with many different chronic illnesses. There were 47 families from all over the country for children's hospital advocacy day. Each family met with congressmen and/or senators for their particular state to advocate the importance if childrens hospitals and special needs. I met one mom who had a set of twins that both have severe cerebral palsy. I am always humbled to meet other mothers and am always amazed at their efforts and ability to come through situations with a positive outlook. Some of these children require 24 hour care in order to survive.

Going to Capital Hill was a great opportunity and a very enlightening experience. I was amazed at how young the average person who worked there was. Most of the people who work for the Congressmen or Senate are right out of college. I don't know what I expected....maybe for them to look as old as me....but I was really surprised. One of the congressman came out of a committee meeting on the budget to meet with us so we were able to see bits of that going on. I wanted to sneak in and sit in on the discussion as that would have been interesting to hear. We were given Gallery passes to sit and watch issues being discussed in the senate, but we ran out of time and opted for a tour of the Capital once we were done with our meetings.

As we toured Washington and saw all the statues, monuments and dedications to all the people who gave their life to make our country what it is today I began to wonder what on earth can I do to possibly measure up to any of these great accomplishments and sacrifices. So many people lost their lives in wars, just as so many children loose their lives to childhood cancer. Fighting childhood cancer is a battle, but we need to win the war. As we sadly learned the news of our dear friend Jacob passing while we were away, we reflected on how precious life is and how greatful we are for each and everyday together. I can only hope that someday there will be a monument dedicated to all children who have lost the battle, but won the war on childhood cancer. It would be a beautiful thing if childhood cancer was a thing of the past and only a memory in history.

Please pray for Taylor's healing and guidance in her treatment. Pray that chemo will go smoothly on Monday and Tuesday. Pray for all children with childhood cancer and their families, but most of all pray for a cure for our children.

Tuesday, June 6, 2006 7:33 PM CDT

Well our summer vacation so far has had some ups and downs. Last week the girl's grandparents were here visiting and just left today so they enjoyed spending time with them. One of my good friends also came into town last week too so we went to Orlando to see her and her family a few days. They have small children so it was fun watching them interact with the Disney characters. Taylor and Jordan out grew the "magic" a few years ago. Taylor didn't want to take her wheelchair into the park as I think she just wanted to be normal. I don't think she wanted the other kids to see her in the wheelchair and refused to let us take it in. We only went to Magic Kingdom for about 4 hours one evening last week, but I guess that was too much. She had been struggling with a cough and I guess the activity was just too much for her and now she has been feeling really sick ever since. Of course, I am kicking myself for not insisting she ride in the wheelchair.

Taylor has been struggling since last Thursday. I have been giving her breathing treatments around the clock for several days as well as the doctors putting her on Prednisone over the weekend. Usually the Prednisone heals her lungs immediately when she has gotten in trouble with this nasty cough in the past. Unfortunately she is still struggling with feeling bad and coughing alot and it didn't seem to help her this time. On Friday she did a Pulmonary Function Test which was not too good. She was coughing alot and the respiratory therapist didn't want to do the test because she was coughing so much, but the doctor wanted the test so we went ahead and did it. Her lung function was 33 percent on the diffuse amount which is 33 percent of 100 so that is not too good.

I took her back to the hospital yesterday and had her seen again by the doctor for the third time within the week to evaluate her. She has not been running a fever, but she feels pretty bad. They put her on an antibiotic for a possible sinus infection. They didn't do a CT of her sinuses, but the doctor said her nose looked conjested and it could possibly be sinus drainage causing the coughing. The antibiotic they put her on will hopefully work for a possible sinus infection and/or prevent pnemonia from developing. We had a chest xray done last week which was negative for pnemonia, but she doesn't seem to be getting better and it can turn into pnemonia at anytime.

I have not seen her this drained in a long time. She hasn't really been eating for about a week and she has no energy. She falls asleep sitting up during the time she is up so I am very concerned. She said she is very short of breath today. I'm sure anyone would be with 33 percent lung capacity. The scary part is that she is acting alot like she did when she was relapsing which is terrifying (minus the cough). I only hope it is some sort of infection and not disease progression, but those thoughts are always there. Since she has had radiation to her lungs and there is disease in her lungs it really concerns me. They told us that Taylor's lung function would be affected sooner than later when we did the radiation, but we had to as three diseased spots stopped responding to chemo. Unfortunately, the radiation permanantly damages the lung tissue that was radiated. Sometimes I feel we can't win for losing. I guess if she is not feeling any better by tomorrow we'll have to go back in to see if they can figure out what is going on.

We are supposed to go to Washington D.C. on Friday to represent the hospital for National Association of Children's Hospitals. I am advocating the importance of the childrens hospital before congress and the senate. I am very honored that they asked me to speak. I don't know what I'm going to say yet, but I am going to try and work on that tomorrow. Normally they only send one parent and the child with the illness, but the hospital was considerate enough to include Jordan. I think it is very moving for people to not only hear the story, but see the physical differences in the girls since they are identical twins. I hope Taylor starts feeling better soon as I don't want to take her on this trip if she is not doing well. I guess if she does not start feeling better soon we will have to cancel.

The physical differences in the girls is becoming more apparent everyday. We went to a restaurant last week and the hostess said, will you only be needing one kids menu? She didn't mean any harm, but we get that alot now. Jordan is about 5'2 now and Taylor is still 4'9. Basically Taylor is the same size as she was when she was diagnosed at 8 years old. People assume she is the younger child, when in fact she is actually 7 minutes older than Jordan as well as being about an inch taller than Jordan at diagnosis.

Well I am hearing her cough alot while I am trying to update so I'm going to go check on her. I am still trying to work the new computer and haven't had alot of time to figure things out yet. One of the days I will get the pictures changed. My father-in law helped me change the home page picture, but it is a picture from last summer, although it's a good one.

Please pray that Taylor will start to feel better and get some relief from all the coughing. Pray for Taylor's healing and guidance in all her treatment decisions.

Monday, May 29, 2006 10:39 PM CDT

Sorry I haven 't updated, but we were without a computer for a while. Our ancient computer finally bit the dust so we had to break down and buy a new computer unexpectantly. It had been making an awful noise for quite some time which would usually be resolved by hitting it a few times. I knew it was only a matter of time before we were going to have to get another computer, but we put it off as long as we could. I don't have any of my pictures from my other computer, but hopefully we can somehow retrieve them. I can't update any pictures until we download a photo program.

Taylor had a pretty good week despite many trips to the hospital. She received chemo on May 15th and 16th and tolerated it pretty well. Her nose tried to start bleeding, but we made sure we had some Amicar to help the bleeding and the Amicar seemed to keep the nose bleeds in check.

We had a very busy week last week as we went to the hospital on Monday and Taylor received platelets. Tuesday we went to Seaworld for the 5th graders field trip. All the kids had a great time and fortunately we had some cloud coverage so it wasn't too hot. Thursday was the girls last day of school and we attended their awards ceremony. Both the girls managed to make honor roll all year long so we are very proud of both of them. That is quite an accomplishment considering all the circumstances they have had to endure.

At the end of the day we attended the "clap out" ceremony where all the kids and parents line the perimeter of the school and the 5th graders walk through the perimeter. Well I started crying and couldn't stop. I made the ugly face and everything. I was one among many mothers crying. Cary and I didn't think we would see both the girls graduate from elementary school, but miraculously we were able to experience that moment. We have been told many times Taylor wasn't going to make it to this point, but she has exceeded everyone's expectations. The school has been so wonderful to the girls and our family that it is difficult to believe they won't be going to school there anymore. The only good thing is that we were able to clear out two drawers of elementary uniforms that they will no longer need. The girls won't have to wear uniforms next year. Yea.....I think.

We had to go to the hospital after the girls got out of school on Thursday and Taylor received platelets again. She also needed blood and her infusion of Avastin so we had to go back on Friday and we were there all day long. The girls grandparents came in town on Friday too so we spent the weekend with them at the beach. Taylor felt really well all weekend, but today she crashed. We have to go back to the hospital tomorrow and she will probably need platelets again.

Taylor has been fighting a bad cough so I have been giving her breathing treatments which seem to help some. She always develops this coughing when her counts are low. Hopefully she feel a little better tomorrow as she is struggling a little tonight.

Well it's late and I'm not used to this keyboard so it is going to take a while to get used to it. Please continue to pray for Taylor's healing and guidance in her treatment.

Thursday, May 18, 2006 4:50 PM CDT

Taylor had a pretty good week although she is struggling daily with her energy level and out of breath more frequently. We had a wonderful weekend. We had a very unique invitation on Sunday for Taylor to shoot a commercial with Warren Sapp as he was hosting a celebrity golf tournament to benefit the Pediatric Cancer Foundation. Taylor was asked to be in the commercial since she has Ewing's Sarcoma and it was to benefit The Sunshine Project which is a project find a cure for pediatric sarcomas.

I was surprised it was scheduled on Sunday since it was Mother's Day, but it turned out to be a beautiful day and the weather was perfect. We got to Orlando around 11:15 on Sunday and we were escorted to where Warren was playing in a golf cart that looked like the Flintstones car to me. We’re the Flintstones, have a Yaba Daba Doo Time.....Actually it was supposed to look like a football, but I couldn't get past the Flintstones song in my head. Anyway, we got to watch Warren and some other celebrities play golf. It was really nice carting around the course as it was such a beautiful day. We stopped at one of the holes where they shot the commercial with Taylor and Remi who also has a form of sarcoma. Warren was very nice and we appreciate him having the tournament along with PCF inviting us to the event. We also attended a party Sunday night at the club where they auctioned off the golf cart we got to ride in along with many other wonderful things to benefit PCF. There were many sports celebrities there so Cary was pretty happy. I didn't know who a lot of them were, but he did. I added a few photos on the photo link below.

Taylor was fighting a cold on Sunday and Monday and although we were supposed to get admitted Monday, she felt bad and didn't get out of bed all day Monday. I let her stay home Monday and rest. We were admitted Tuesday and came home late yesterday afternoon. She wasn't herself on Sunday I could tell, but she always smiles and hangs in there even when she doesn't feel her best. We did a quick news interview Tuesday prior to admission for Dr. Tebbi's research fund, C.C.R.G. Children's Cancer Research Group. Dr. Tebbi is trying to develop a vaccine for Neuroblastoma and other types of pediatric cancers. The story was on Tuesday night. The link to the story is: http://www.drtebbi.com/index.jp?edge=content.dspContent&pagecode=home

You have to copy and paste it to the browser from here as I can't link it on the site through Caringbridge.


Today Taylor's school had their third annual Jump for Heart in which the kids jump and run to donate money for Taylor's medical trust fund. I took Taylor in this morning so she could be there when the fifth graders jumped early this morning. Taylor’s school has been so wonderful to us over the past three years. I don’t know what we would do without such wonderful teachers and staff to help the girls through this. Thank you to everyone who organized this event and to all the kids who participated. We love you all.

Taylor pretty much stayed in bed the rest of the day. They want me to bring her to the clinic tomorrow to check her counts to make sure she can make it through the weekend ok. She has her class picnic tomorrow so I have to take her to the clinic very early and then take her to the picnic which is about 30 miles away. If she needs anything, I will have to take her back to the hospital after the picnic. I don't mind though as long as she is happy and able to participate. This is the girl's last few days at elementary school. I can't believe they are going to middle school in August.

Well it's been another hectic week as you can see. Taylor tolerated the chemo pretty well. She was only sick at the beginning which is probably due to so many drugs in her system within a short period of time. She is very tired and looks very pale, but she is ok. Thank you for all your prayers and support.

Please continue to pray for Taylor's healing and that she will make it through the next few weeks without nose bleeds from the chemo as these next few weeks will be rough on her. Please pray for our friend Jacob who we love dearly and is in PICU. Please pray for the Dream Team to find a cure for pediatric cancer through the efforts of the Sunshine Project and also that Dr. Tebbi will develop those vaccines to prevent childhood cancer. We need to put an end to pediatric cancer and all the suffering these children go through. Although we have had the honor to participate in so many wonderful opportunities, we would trade it all for Taylor being cancer free.

Saturday, May 13, 2006 6:36 AM CDT

I don't have anything different to share on Taylor's treatment today. However, I do feel very humbled and thankful that we still have Taylor here today. Last year I thought that it would be the last Mother's Day I would have with Taylor according to the doctor's prognosis. I just remembered this yesterday and how I have been focusing on all the wrong things. It is so easy to get caught up in the worldly day to day things that we loose our focus on what is important. As I began reading a spiritual book again to get the focus back on spirituality I read a page that really hit me hard.

The page in the book read: X-ray of the soul of the vengeful and behold the tumor of bitterness: black, menacing, malignant. Carcinoma of the spirit. Its fatal fibers creep around the edge of the heart and ravage it. Yesterday you can't alter, but your reaction to yesterday you can. The past you cannot change, but your response to your past you can.

I realized that I had allowed cancer of the spirit to take over and take away hope. Last night we went to our favorite Mexican restaurant where they have two men come around and sing to you. He asked us if we had anything we wanted him to sing and we said no. He also asked the girls and they said no. We have heard him sing many times, but he began to sing "Somewhere Over the Rainbow". That is one of my all time favorite songs in my favorite movie the Wizard of Oz. I had to fight back the tears as I really listened to the words of the song even though I had heard it a thousand times before. Now it isn't very common for them to sing this song at a Mexican restaurant I don't think. At least they had never sung it before when we had been there many times before.

I have shared many times that the last words my brother said to me was "It looks like the Emerald City in the Wizard of Oz." God really has a way of waking me up even when I'm snoozing hard and not responding. I realized what a miracle it is that Taylor is here for mother's day again this year and how we need to enjoy every moment we have with Taylor. What a blessing, what a wonderful, awesome miracle. My gosh, I can't believe I overlooked such an amazing thing.

We have so much to be thankful for and we cannot allow cancer of the spirit to take over our hearts and minds. Although Taylor is dealing with it physically, she really doesn't allow it to take over her heart and mind. Sure there are times she is discouraged and sad, but for the most part she is happy. She told me a story yesterday out of the blue. She said, "Mommy I have a story to tell you from the bible. She said there was about a group of people who wanted to punish someone by throwing stones at him because he had made a mistake. She said, Jesus told them go ahead and throw the stones if you have not made any mistakes in life. She then told me that they all dropped their stones because they had all made mistakes. She wasn't directing the story at me, but maybe God was. I realized that I had made a mistake in allowing myself to throw stones at anger, negativity, loneliness, sadness and despair and I was wasting all my time and energy on that. I wanted to throw stones at someone or something, but it wasn’t working.

Please pray for that Taylor's chemo will go smoothly Monday and Tuesday. Pray that she won't have the bad nose bleeds due to toxicity.

Please pray for all mothers of children with cancer and especially those who have lost their children this year to cancer. Happy Mother's Day to all mothers.

So my dear brothers and sisters, stand strong. Do not let anything change you. Always give yourself fully to the work of the Lord, because you know your work in the Lord is never wasted.

1 Corinthians 15:58

Thursday, May 11, 2006 3:01 PM CDT

Taylor was able to receive Avastin on Tuesday without any problems thankfully. Her platelets were only 52,000, but we left her accessed in case she was able to be admitted today for chemo. They are supposed to be 75,000 for chemo. We knew they wouldn't be 75,000, but if she had recovered a little more we would have gone ahead with the admission. Well they were only 55,000 so we decided to wait until Monday and try again. We are all so afraid of the nose bleeds occurring again so we are trying to let them get a little higher. Platelets are what allow the blood to clot. The chemo toxicity level has been destroying Taylor's mucus membranes thus the nose bleeds start and we are unable to get them stopped due to low platelets and the mucus membranes being destroyed. She really didn't feel too well today anyway so she wanted to wait as well.

I am trying to pick myself up after feeling very sad, tired and discouraged with chemo and cancer. It is so difficult to keep repeating the chemo treatments over and over again knowing how it is going to affect Taylor. A friend put it into a very simple perspective. You know when you have had a very bad stomach flu and you feel horrible and you hope you will never get it again. Well getting chemo is much like that. You know how horrible it was, but yet you have to keep going through it again and again. I think it is just as hard being a mother of a child going through chemo as it is being the child with cancer at times. I looked around the clinic Tuesday and today to see so many sick children and it is so hard to be in that environment day after day. Today kids were screaming all morning and getting sick all over the floor. It was so crowded it was just crazy today. I just want to pick up Taylor and run away as fast as I can and never come back. If we had an end in sight we could put our eyes on that, but we don't. I only know I am not alone in this battle as there are many other mothers going through this too. I am trying to be thankful for everyday and not focus on all the negatives, but life has been a little more challenging this week.

Our cat has quit pooping in her litter box. We have had to remove all the rugs in the house and keep all the bedroom doors closed as she thinks her litter box has moved to the bathroom rugs. She won't poop in the litter box to save her life. She will poop right next to the box, but not in it. The dogs love to eat the "kitty biscuits". So I have to try and beat them to the poop before they get it and drag it all over the house. I'm a "clean fean" so it is all very hard to deal with. I talked to the vet and they tell me it's behavioral and she needs to be put on medication to ease her anxiety. Ok, the cat only has to eat, sleep and poop what has she got to worry about. I think it's because of Roxie who likes to chase her. Roxie the dog has chewed up everything including my trifocals this week. The cat knocked off Jordan's IPOD she got for her birthday onto the floor and Roxie proceeded to eat it. Yesterday someone left the freezer door open the night before in the garage and all the food was destroyed and water was all over the floor in the garage. When I started cleaning it up I noticed a huge ant mound in my garage like I have never seen. Thousands of ants had built this huge ant mound that was about 10 feet long and they are coming up from the foundation and through the stone of the house that was not sealed up when the house was built. We had to move everything away from the garage walls which was quite a task. Since Taylor wasn't admitted today, I got a pest control person out this afternoon and hopefully can get the builder to fix the garage floor. (I'm sure that will be a fight). My temporary crown fell off for the third time yesterday so I'm thinking why take the time to try and put it on again as it's probably going to come off. I ate the second one (not on purpose).

I guess it's a good think the freezer defrosted because I wouldn't have discovered the ant mound until the whole garage was covered probably. Maybe the cat and Roxie dog could move in with the ants and they could all live happily ever after. Really all of this is just trivial in comparison to Taylor's illness. I am praying to regain my strength and hope back as I'm not any good to Taylor if I'm having a pity party for myself. I have had major PMS so I think the hormones are trying to take over and move in. I'm trying to kick them out, but it's been a major struggle. We really appreciate all the uplifting prayers and comments. It is hard to stay focused on God and remain positive with so many difficult things happening, but I’m trying to get back to that focus. I guess the website helps in just being able to get some of this out.

Please continue to pray for Taylor's healing and guidance in her treatment plan. Please pray that chemo will go smoothly next week and that she won't experience the nose bleeds again. Please pray for all mother’s of children with cancer and especially pray for the ones that have lost their children to cancer this year.

Sunday, May 7, 2006 10:27 AM CDT

Taylor has felt pretty good the past few days. I changed her chemo from Tuesday to Thursday this week because she is due for Avastin on Tuesday and if she doesn't get it I know she will be too sick again to get it the following week. I am still struggling immensely with continuing the chemo protocol we are on as the doctor confirmed the chemo is causing Taylor's mucas membranes to be destroyed thus causing the nose bleeds. I don't know if we can go through another round of what we dealt with last time.

Please continue to pray for Taylor's healing and guidance in her treatment.

Tuesday, May 2, 2006 7:21 PM CDT

We went to the hospital today for a tentative admission for chemo as today is 3 weeks since Taylor's last round. I knew she wouldn't qualify, but we have to pack the car like we are going to be admitted just in case, which is a big ordeal. We take several blankets, pillows, movies, the computer and the aero bed. I takes me about 4 or 5 trips in and out of the house to get things loaded for a 48 hour stay. We try to pretend we are not in the hospital as much as possible.

Taylor hates the way the bed and sheets feel so we take our own blankets and pillows. We bought an aero bed when Taylor was diagnosed which has been the best investment we have probably ever made as the hospital does not have a place for me to sleep in her room. I love the aero bed as it inflates high enough to lay right next to Taylor while we are in the hospital. Many times she will sleep in it because she hates the way the hospital beds feel. Anyway, the aero bed weighs about 30 pounds or so which is quite fun to load in the car which has to be unloaded now. hahaha

Taylor didn't qualify for chemo. In fact she had to get platelets again today. I knew they would be low, but they dropped significantly from last week when we thought she was recovering. That makes her 5th transfusion since getting her last round of chemo. I thought her platelets might be low as she started getting bad headaches on Sunday and Monday which is one of her symptoms when her platelets are low. We have to go back to recheck her Friday. We will try again for an admission next Tuesday. I kind of hope she qualifies as the 5th graders have 3 field trips this month that we are trying to have Taylor attend, which is challenging. One of them is to Seaworld which will be from 7:30 in the morning until 6:00 at night. I'm not sure how that's going to work out....I might have to go so Taylor can go or follow them or something. I guess we'll see where we are in a few weeks with that.

Taylor was very disappointed to hear that we are continuing the chemo regimen we are on. We both had a very long crying session. I told her about the 5 day outpatient protocol as an option as she needs to be involved in the decisions too. She is going on 12 now and we have to respect her wishes as she has had to endure 32 months of this so we allow her input and respect her wishes. I told her all the pros and cons of both and she decided to stick with what we know is working. She is very smart and understands so much, it is amazing but scary all in the same way. After it was all said and done, she put a smile back on her face.

I got the copy of the scans today and actually I was more encouraged than when I talked to the doctor. They read better than the doctor communicated them to me. It was the same as I was told, but words on the scan seemed less harsh than the communication. I’ll choose to hang on to that for today. The large tumor on the iliac bone and tissue had decreased dramatically, which were the radiologist's words. I liked that part the best. Although it did say two of the nodules in the lungs had increased slightly, only one of them had hypermetabolic activity. The area in the spine at L5 said there was mild hypermetabolic activity. The theory behind a PET scan is that if there is alot of metabolic activity, abnormal cells are active, meaning abnormal cancer cells. There shouldn't be any activity other than the heart, brain and perhaps the bladder, but I thought it actually sounded encouraging even though there was activity and we have to continue chemo for infinity at this point. We haven't been able to have a PET scan for about 18 months due to insurance denying it so we don't know if the hypermetabolic activity was better or worse at this point. I do think it is wonderful that the large tumor decreased significantly though. We haven't seen those words in a long time.

I tried to get the focus back on God and not so much on the words of the scan. We were in the back yard this weekend and the girls said, "Look mommy there is a rainbow above our house." We haven't had rain here in months and it had not been raining Saturday either. Well, I looked up and there was a perfect circular cloud above our house with a rainbow around the circle. It was not the typical arched rainbow, but a perfect circle outlining the perfect circular cloud which had the sun in the middle. It almost looked like an eye to me or kind of like a halo effect. That was one of the most amazing things I have ever seen. I would like to think it was the eye of God telling me to look up and remember he is in control of everything. I have to remember that feelings and faith are two different things

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight. Proverbs 3:5-6

Friday, April 28, 2006 1:41 PM CDT

QUICK MONDAY UPDATE:

Taylor is feeling a lot better and had a good weekend. We finally got the pictures sent to us of Taylor on the ice with the team. Some of the photos were taken during the National Anthem being sung. To see the photos you will have to copy and paste to your browser as Caringbridge does not allow links from here.

http://www.printroom.com/ViewGallery.asp?userid=puckpix&gallery_id=371549

FRIDAY UPDATE:*******

Sorry I haven't been able to update, but this week has been very hectic and emotional. Taylor was able to receive Avastin on Tuesday without any major issues thankfully. Taylor remained accessed on Tuesday for the scan on Wednesday. When we went to nuclear medicine, the lady started telling us that she was going to have to start an IV in Taylor's arm to give the nuclear medicine injection because she couldn't give it through the port because it has plastic in it. Well that didn't go over well at all. I told her, Oh No, you can give it through the port. She went to her supervisor and yes we got the nuclear med injection through the port.

I don't have a copy of the scans yet, but talked to the doctor late yesterday. I don't really know what to make of the results. He said that the scan "lit up" at L4 and L5 of her spine, which we are very disappointed to hear. That was the location of her original tumor that she received 6 weeks radiation at her initial diagnosis. I asked if he thought it was post radiation changes and he said no because normally the tissue would be dead and nothing would have shown up as active. He said it is in the bone, but that it has been there and the lesion is not too bad. (they are all bad to me). He said a few nodules in the lungs increased just slightly by a few millimeters. He also said that there is no way to accurately and precisely measure them and that the difference was so slight they cannot be sure it is an increase. He did say that the tumor on her iliac bone and tissue had DECREASED SIGNIFICANTLY which we had hoped for since she has not been limping. He said that since the tumor is shrinking on the hip, you would think that the rest will follow. However, Ewing's Sarcoma can form abnormal cell clusters at any site even though some are responding, other sites may not respond.

We are very grateful and thankful, but we are also disappointed in some ways too. I just want Taylor to have a normal life so desperately and I guess it is not going to happen. We also wanted to change her protocol to a drug combination proven effective for Ewing's Sarcoma relapse patients, but Dr. Tebbi highly discouraged us from doing so. It is less toxic and although it is a five day protocol it would be outpatient. I guess I thought that if we could have done outpatient chemo and not have to have 4 or 5 transfusions of platelets and blood per chemo round it might help Taylor have more of a quality of life. The only problem is that we would risk losing what we have gained and that would not be good either. They consider anything that is working for her disease effective and they don't want to change what is working for her. The other protocol might not affect her hair loss either, which is another reason we were considering it.

Taylor has been so sick the past two rounds she has barely been able to attend school and if she does it wipes her out for a day or two. We had parent orientation this week for middle school and I am so scared of how that will affect her. Cancer not only affects her physically, but emotionally and socially as well. All the girls her age including her sister are maturing into young ladies which just breaks my heart as Taylor is still the same size she was at 8 yrs old when she was diagnosed. All the girls are talking about boys and social things and she is not included in those things. Taylor wants to play soccer, but she can't which also breaks my heart. I am so afraid she will be ridiculed because she doesn't have any hair as the middle school will have a lot of students that don't know her as it combines 5 different elementary schools in the area into the middle school. She is just so tired of chemo and just plain tired in general. Today I had to sign out Jordan a few minutes early and the 5th graders were having their picture made for the yearbook and Taylor was not in the group of kids because she felt bad today. I started crying and couldn't control the tears from streaming as I just feel it's not fair. I wish I could give Taylor her life back.

The doctor wants to do two more rounds of chemo and then rescan her again. She is technically due for another round on Tuesday, but I'm 99.9 percent sure she won't qualify. She is not feeling well today at all and it’s only been 3 weeks since her last round. She is supposed to get chemo every three weeks, but her body just can't handle it. I am still struggling with continuing the chemo protocol as last week was really bad and she was so sick. When you have to pick her up off the floor from getting sick, things are pretty bad. I had told myself last week that we can't continue to put her through this, but we don't have alot of choices.

Sorry I'm so emotional, but scans tend to tear me up for a while in addition to everything that happened last week. I also took my final Tuesday morning and made an 86 on my final which is just short of a miracle. I have no idea how that happened as I had no confidence and couldn't focus due to everything that happened last week. I had decided that as long as I could get a 55 I could finish the class with a C, but ended up getting a B in the class. God literally carries me through everything.

We got a call yesterday that Taylor was selected as the Honorary Kid Team Captain for the Tampa Bay Lightning at last night's playoff game. She didn't feel very good, but she went anyway. They made a jersey for her that has her last name on it with Brad Richard's number 19 on it. That was so cool in itself. (not to mention it will fit me too). She went down on the ice at opening ceremony and they took tons of pictures. I couldn't take pictures as we had to stand behind her and couldn't see her except on the jumbotron. All the players were skating all around her when they came out on the ice. We spent a lot of time right next to the ice during their warm-up and I will say it was very exciting. Although we have met the players, it has been in regular clothes and they all look so much bigger in their uniforms and skates.

We don't normally go down to the ice during warmup. They were shooting the puck so fast and hard that every time it would hit the wall next to us I would jump. Jordan didn't want to go with us last night as she is not a big of a hockey fan as the rest of us are. You can tell I am wearing my feelings on my face last night as I had just talked to the doctor prior to going to the game, but we really enjoyed our time last night. (except that we lost)

The St. Pete Times Forum photographer took pictures of her and the whole team, but I just checked the site and they are in the process of being downloaded and the ETA is 6:00 tonight. Once they are up, I'll link it to the site. Brad patted her on the shoulder and said hello to her last night on the ice which I thought was great. He knows Taylor, but they are in deep concentration for the game so that says a lot about Brad. Unfortunately, we lost last night, but Brad scored an awesome goal last night. I told Taylor she should have given them some tips as the captain. She just gave me "the look".

Please continue to pray for Taylor's healing and guidance in her treatment. Thank you for all your prayers, support and comments. I know that we are being carried through all of this on angel’s wings and prayers. The PET/CT scan results aren't too bad according to the doctors, but the disease is so aggressive that Taylor has had to receive almost 32 continuos months of chemo to keep the disease from progressing. We will always hold out hope that one day a cure will be found for Ewing's Sarcoma. Until then, please continue praying for Taylor and that they will find a cure for her disease.

Saturday, April 22, 2006 6:17 AM CDT

I took Taylor back to the hospital yesterday. She did need blood and platelets as I anticipated. Even though she looked white as a ghost and was struggling, she had her wonderful, witty sense of humor back and was cracking jokes on the way to the hospital. Her hemoglobin had dropped to 7.3 and her platelets were 27,000. Since it had only been 36 hours since her last transfusion and they were dropping so quickly, they went ahead and gave her platelets to get us through the weekend. Maybe she will start to make her own now since she is probably hitting her Nadir (peek) with the chemo effects. We were there from 8:30 to 5:00 as it takes so long to get the counts back and get blood and platelets.

I started loading up the car to go home yesterday as I take in all kinds of things to keep Taylor entertained. I figured everything is ok and no reactions so I’m going to go outside to load up the car. Well I go back in and the nurse tells me she heard this big crash and ran into see what happened. The TV cart had fallen on top of Taylor. I had placed the TV right next to her bed and I guess Taylor pushed the button on the bed to lower it and when she did it caused the whole entire cart to fall on her. Luckily she was ok and we just had to laugh about it. Can you imagine after all of that having to page the doctor because Taylor is squished under the TV cart.

Taylor's bleeding has stopped as well so she is very happy about that and so am I. The girls made about 50 cupcakes last night because one wanted chocolate and the other wanted white. I was just so happy to see them both happy and enjoying themselves. Taylor feels much better and hopefully will have a good weekend. She is hoping to go back to school on Monday. Tuesday she is supposed to get Avastin if her counts are ok. Wednesday she is supposed to get a PET CT which is a very accurate scan that measures metabolic activity rather than just the anatomy so it is very revealing. She gets a nuclear medicine injection so if there is abnormal activity it will light up. They can also see the anatomy, but this test will allow them to see if the tumor on her hip is active since it has been stable for a long time in addition to the ones in her lungs. On the other hand it is very scary since it is a very accurate measure of what is going on inside.

Last night I did notice she was NOT limping for the first time in a long time so that gives me a lot of hope for her. Normally the tumor on her hip has been causing her to limp significantly at times because it had spread into her muscle as well. However, she was walking normally last night. PRAISES!

Please continue to pray for Taylor's complete healing and that we will get good results next week in addition to her feeling better. Wednesday is a crucial day, so please be praying for Taylor and our family.

The picture today is a shot taken of the girls by the Pediatric Cancer Foundation photographer at the Breakfast of Hope. What a great shot he captured. That's why I like their photos so much as he gets great shots when no one is looking that show more emotion than a lot of photographs. This shot shows their bond and love for each other.

I have to include my favorite scripture as it carries me through everyday.

Therefore do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18

Thursday, April 20, 2006 11:32 AM CDT

Well I took Taylor to the hospital again on Monday and she did require a platelet transfusion as they were only 21,000. Unfortunately, Monday night her nose started bleeding about 1:00 a.m. until about 3:00 a.m. I called the hospital on Tuesday and they told me to bring her back in yesterday morning rather than today. Normally platelets last 72 hours, but since her nose was bleeding they told me to bring her in yesterday rather than today.

When she woke up yesterday her nose started bleeding about 8:00 a.m. We went to the hospital to get her platelets checked again which turned out to be a very long day. They informed us after waiting two hours for her counts that her blood had been lost so they had to poke her finger again. Meanwhile we are going through towels trying to soak up the blood coming from her nose. I kept asking to see the doctor and finally we saw him. I was told they were going to call in a specialist to cauterize her nose, but that never happened. After another two hours of bleeding I kept asking what are we going to do. I felt like I was losing it on the inside and wanted to scream, Please Help My Daughter! They would have probably admitted me to the psych ward if I had expressed myself as I truly wanted to, but didn't. Finally her platelet count came back at 19,000 so she got another transfusion

The doctor asked Taylor if she had gotten hit in the nose or anything and to my surprise she said yes. I'm like when did this happen. Apparently she got hit in the nose with a ball at the pool Friday night that no one told me about since I wasn't there. Dad didn't connect it since it happened Friday night and the bleeding didn't start until Sunday. They think it burst a blood vessel and it can't heal due to her platelets being so low. Well they finally ordered some Aminocaproic Acid about 4:00 p.m. to help her blood clot at my request. This is a drug they use for hemophiliacs.

Unfortunately, it got lost in the tubing system too so we didn't get it until about 5:00 p.m. Finally her nose quit bleeding after about 6 towels full of blood. We had to get her platelet count again to make sure she wasn't dropping as fast as they were going in. Fortunately, they were stable so we went home about 7:00 p.m. last night. Her hemoglobin dropped from 9.3 in the morning to 7.9 last night from all the blood she lost. A normal person runs about 12.0-15. I am very concerned about that as normally that is transfusion level. If she bleeds any today we have to go in. So far her nose is ok, but she looks like someone punched her in the nose from all the clotting in her nostrils.

We are going back in tomorrow morning and I'm anticipating she will need blood and/or platelets again tomorrow. They said her body will probably eat up all the platelets trying to clot in her nose. She is remaining on the blot clotting medicine every six hours which consists of 7 pills that we have to cut in half so it takes her a while to take 14 of them. Whatever works we'll do it.

Meanwhile I have a final next week and I can't focus. I fought back the tears in class this morning and told the teacher I didn't understand and can't seem to grasp the last two chapters. I could feel myself starting to cry and my voice was shaking so I just stopped talking. Sometimes feelings come out at the worst moments when your not ready for them. I feel old and tired and like I'm never going to make it. I hope that feeling disappears between now and next week.

Again, we appreciate everyone's love and support through this difficult situation.

Please continue to pray for Taylor's healing and recovery. She is due for scans next week as well so we definitely appreciate all the prayers, love and support.

Encourage each other and give each other strength. 1 Th. 5:11

Monday, April 17, 2006 7:34 AM CDT

Taylor was able to receive chemo last Tuesday and Wednesday. Thankfully she didn't have any reaction which was wonderful. The past three admissions have caused pretty scary reactions so we were very nervous. They gave her four drugs to prevent her from reacting which seemed to work for her. We had a lot of visitors this time while we were in the hospital. We had visits from three different dogs which are part of the pet therapy in the hospital.

Taylor had wanted to sneak Molly and Roxie in and she talked about it on the way to the hospital. One of the dogs that visited us was a golden retriever just like Molly so that made her feel better. The best visitor was the Easter Bunny along with Snow White, (who had a tan), Sleeping Beauty, and Cat in the Hat. The Easter Bunny was pretty cool as he gave her an IPOD shuffle. She liked that kind of Easter Bunny.

We went over to Orlando Friday night as Jordan was performing at Universal on Saturday morning. What a comedy of errors. Normally, we would not have gone right after Taylor had receive chemo in addition to it being the most crowded weekend of the year due to Easter, but since Jordan was performing we didn't want to miss it. I had to have Jordan at the Holiday Inn across from Universal at 8:45 a.m. Jordan has to have her hair in a bun to perform. If you aren't dressed properly, you don't perform. Well her hair tie broke as I was fixing her hair as her hair is so thick. I used one of her scrunchies and was able to hide it under the required black scrunchie with sequins that goes around the bun. We were very pressed for time. Well then I turned right rather than left out of the Universal area, and had to turn around which was not easy. When we got there the instructor asked me for her change of clothes. I'm like I don't have a change of clothes. I was informed that Universal will not allow them to enter the park in their uniforms. Every other performance over the past 2 yrs required that she be in uniform and no one told us that prior to 8:45 Saturday morning. Luckily Jordan had a jacket that she wore over the uniform.

I went back to the hotel to get the rest of the family. We thought we had time to grab a quick breakfast and head over to the park for the 10:00 a.m. performance. It was very crowded in the grab and go line at the hotel, but we stood in it. They gave us the wrong drinks which are not cheap and it took forever to get them corrected. We walked to the park from the hotel, which is a Universal Hotel, but it was a lot further than we thought it was going to be. We had renewed our passes over the phone last weekend and we were told all we needed to do was go to the front gate. Well after standing in a very long line to get in, we get up there and our cards don't work. We had to go to guest services to get them fixed. Cary got a managers attention as it was 10:00 a.m. by then which is the time Jordan was performing. The manager got us in and we went to the stage we were told Jordan would be performing at. Well no one was there. It was 10:15 by then. We then went over to another stage and found them. Remarkably we were able to see her performance. She was twirling two at the same time. We were very proud of her. Click on photo link at bottom to see Jordan twirling.

After the performance we normally are able to take her, but they wouldn't let us. They told us to meet them at the front gate. We went to the front gate and they were not there. After an hour of waiting I became panicked and walked all over the park looking for them. I was thinking I missed them and Jordan is probably crying by now. I also went outside the park to the main gate and they were not there. I tried to get back in and my card scanned, but an Asian lady's picture came up with my name on it on the computer screen. They are like, this is not you. I said this is my picture on my pass I have in my hand. They made me take off my sunglasses and gave me a very hard time. We had to go back to guest services again. Oh, my sunglasses fell off my face trying to get Taylor in the door at the hotel with the wheelchair later that day and the lenses broke into little bitty pieces so I don't have to worry about trying to disguise myself anymore and sneak into Universal.

Jordan didn't have a change of clothes or any money to get anything to eat or drink. She was in tights and her uniform which she is very self conscious in. She is very modest. I couldn't find the phone # for the instructor. Someone heard me complaining and panicking and she was another mom who had the cell # for the group. I called them and they had taken them all the way out of the park to the parking garage to change. This is a very long walk, especially in those twirling shoes that have no support. I was not happy to say the least as Jordan had nothing to change into and had not eaten or drank anything and it was noon by then. Not to mention it was 85 degrees with no clouds in the sky and the Florida sun is brutal.

Taylor was getting sick due to the heat and not eating. It took two hours for them to get back to the gate. I immediately took Jordan and we met Cary and Taylor at Hard Rock to eat something. Well Taylor didn't pack Jordan any clothes or shoes to change into. Jordan was supposed to pack her own clothes, but of course did not as they stayed at the pool Friday night until ten. I had told her about 50 times to please pack her clothes. (I'm a broken record). I was trying to study as I have a final next week while Cary and the girls were at the pool. Taylor packed Taylor's clothes for Jordan to change into, not Jordan's clothes while I was gone delivering Jordan. Jordan can't wear Taylor's clothes as Taylor is still wearing a size 10 and Jordan is 5 foot 2 now. So tens just won't work. We were in the bathroom at Hard Rock and Jordan was hysterical and crying. I had to go buy her some shorts and a shirt very fast. Of course, she hated what I bought, but the selection was very limited. We ate and went back to the hotel and tried to enjoy the rest of the day at the pool although there wer not any chairs to sit in at the pool because it was so crowded so we just sat in the pool.

Sunday morning Taylor's nose started bleeding. I wanted to go home and take her to the hospital, but I met some resistance from the rest of the family. We went to the park and Taylor only rode Cat In The Hat and some other ride in Jurassic Park that is very mild. All this time her nose won't stop bleeding. After the Cat In The Hat ride she stood up from her wheel chair and got a Churo. Well her nose started bleeding worse. We had to go to first aide and have a security guard drive us back to the hotel as the motion from the wheel chair was making it worse and it was hot and a long walk. We had brunch reservations at noon. I had a special pack to stop nose bleeds that they use on hemophiliacs, but it didn't work either on her nose. We spent about 30 minutes in the bathroom messing with it, which stopped the bleed for only a few minutes. Again I wanted to leave, but was met with more resistance. Just listen to the mom's we know what we are talking about....Ok.

After sitting at the table for 20 minutes, I insisted we leave as Taylor could not eat or anything due to the nose bleed. We left and went straight to the hospital as I had a script for a CBC Stat. Of course there was a major wreck on I-4 and they had shut down the East Bound lane completely. We were West bound, but it doesn't matter. It took us about 2 hours to get back to Tampa.

We went to the lab at the hospital and it wasn't there. They had moved it to the basement. We went to the basement and they had no one there to draw blood. They started the whole insurance issue with me and I knew they were going to send us to E.R. I said thank you very much and took her to the pediatric oncology floor and told them I didn't know what to do at this point. The wonderful nurse said she would take Taylor's blood and put us in a room to wait. Thank you! Her counts came back pretty low. Her platelets were just above transfusion level, but they didn't transfuse her even though her nose had been bleeding for 6 hours.(I know it doesn't figure or make sense to me either since her nose was bleeding so bad). Her nose bled all the way up to last night. We are going back to the clinic this morning. She started getting mouth sores again, so we had gotten another bottle of Nystatin before we left. I'm thinking maybe the chemo is destroying her mucus membranes and causing bleeding. I hope that is all it is. Although that's not too good either.

Taylor was crying as we were leaving Universal saying that she ruined everyone’s Easter. Although I tried to comfort her and tell her this was nothing anyone had control over and she didn’t ruin anything, it just broke my heart that she even had to deal with any of that and had those thoughts. Last Easter was the day all her hair fell out after starting chemo again from relapsing. I remember we both cried all morning as huge chunks of hair fell out. She was too sick to go to church and I was so heart broken to watch this again. I had planned on going to the late service as we were taking turns going, but I just couldn't leave her like that. Needless to say that was a very hard day last year too. She kept saying how she was praying and praying, but her nose won’t stop bleeding and where was God and why won’t he help her. Sometimes she asks me some very hard questions that I have a hard time answering myself. I was completely broken inside, but tried to keep it together and answer her questions the best I could, but I'll admit I sometimes feel that way too.

Well I guess some weekends are just a "wash" and this was one of them. I guess we tried so hard to make it a good weekend, but no matter how hard we tried it just wasn't working out. Please for Taylor and that her nose bleed will stop or they will find a reason for the continued bleeding. Her platelets run low all the time which is very scary as bleeding can occur internally as well as externally. Thank you for all your thoughts and prayers and just listening.

Sunday, April 9, 2006 7:17 AM CDT

We were not admitted on Thursday for chemo. Ok everyone now what exactly were you all praying for? I woke up Thursday morning with the worst virus I have had in years that felt like the flu. Today is the first day I have started feeling like myself. It was very ugly and I have not been sick like that in a very long time. I only hope and pray that no one else gets it as I still can't eat due to feeling nauseous. Anyway, I'm just kidding about what was everyone praying for as it did keep us from going in.

When I called the nurse at the hospital I felt like I was calling in sick to work, now that's pretty bad. I do believe that everything happens for a reason. I was very reluctant to have Taylor admitted due to her being on additional medications for her lungs. I was worried that additional drugs would affect her adversely as she would have been taking 4 different steroids in addition to her 3 chemo drugs. I think we would have had to call in a team of mental health counselors to get us through all the steroid affects. I would have needed them to hook me up to an IV of Adavan to be able to deal with the steroid affects on Taylor. (just kidding, but that's the magnitude of it.)

I would have gone ahead and taken her in had I not gotten sick and probably would have been persuaded to admit her against my better judgment. However, since I became so sick I didn't have a choice in the matter. We are going to try again on Tuesday because they have too many admissions on Monday.

Taylor has started feeling much better although she is still coughing. At least she finished her Prednisone medication so she will be off that drug for her chemo regimen. We have an appointment on Tuesday with the Pulmonologist in the middle of the admission. His office is down the street so maybe I can get her counts done, accessed and then run her over to the Pulmonologist prior to getting chemo started. It usually takes many hours to get all of this done so we’ll probably have plenty of time. It took me 5 weeks to get the appointment, which is crucial so I hate to miss it.

There is a lovely article today in the Tampa Tribune about Taylor. I'll include the link here. I don't think you can click on it here, but you can type in this link or copy and paste it to your browser to pull it up. It wouldn't link it for some reason.

http://www.tbo.com/brandon/MGB5Y23CSLE.html

Taylor was able to go to Brad Richard's suite Thursday night with her dad since she wasn't admitted. Brad was supposed to be in the fashion show Tuesday night, but couldn't make it due to commitments. Dad said that she gave Brad a hard time about not being there. She was so funny at the show. Taylor was escorted by Mark Jones from the Bucs. She had never met him before and he asked to meet her so I went to get her and told her she was going to be escorted by him. Well she just threw a fit and said she only wanted to be escorted by Brad and just where was he. I told her to please be nice to Mark as she would hurt his feelings and that Brad had other things he had to do...like earn a spot in the playoffs! GO LIGHTNING!! She was very nice to Mark and it went well. Cary said Thursday night Taylor and Brad were going back and forth teasing each other about it. That made me feel good as that meant she was feeling pretty well.

Please continue to pray for Taylor's healing and guidance with treatment. Please pray that she doesn’t have any adverse reactions to chemo and that we are able to come home in time so she doesn’t spend Easter in the hospital.

If you would like to donate to the Sunshine Project, which is a research project to find a cure for pediatric sarcomas, please visit the Pediatric Cancer Foundation website at www.pcfusa.org.

Therefore do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18

Wednesday, April 5, 2006 4:42 PM CDT

Just a "short entry". Taylor was able to receive Avastin on Monday with no side affects. They started her on breathing treatments and prednisone as her lungs were in trouble again. She is much better, but still has that nasty cough that she always get when she is immune suppressed and her underlying asthma kicks in as well.

They still want to tentatively admit her tomorrow despite all her medical issues this week. I don't feel very comfortable with this at all as her platelets were 59 on Monday and they are supposed to be 75 to qualify. The doctor wants to ignor her platelets and go ahead with chemo, but I'm getting that gut feeling you get as a mom that it's not ok. (like why are they supposed to be 75 but it's ok if they are 40) I'm worried about her crashing again not to mention that she is having lung issues. She would still get her breathing treatments in the hospital which is Albuterol, in addition to prednisone, hydrocortisone, Anzamet, benadryl, Gemcitabine, Paxlitaxol and Carboplatin. Can you see why I don't want to do this? That is 8 drugs I think in a 24 hour period. I guess I need to ask for prayers of guidance as I also feel I'm responsible if I don't let her get the chemo on time, meaning the disease could gain an advantage. I know it's crazy but that's how I feel. Please pray for us with this decision.

On a happy note, Taylor was able to participate in the fashion show and it was wonderful. There were twice as many people there this year that last. Probably about 500 or so. The girls were so beautiful as well as the professional models in the show.

Hyundai Hope on Wheels also came into Tampa yesterday to present Dr. Tebbi with a $45,000 check for cancer research yesterday. Taylor read her Hyundai Hope on Wheels Kids Spokesperson entry and everyone was amazed at her poise and ability to speak. There was a short article in the Tribune today with her picture and there will be a big story this weekend in the Tribune as well as the Times in the Brandon Section. Needless to say I’m exhausted from all the driving back and forth yesterday. I think I put 250-300 miles on the car yesterday as I had class as well.

I didn't get very many good pictures at the Fashion show as my camera battery needs to be replaced and so the delay was several seconds so I kept missing the shots when they were all coming down the runway. I will get some better pictures next week from PCF I hope. Anyway, I have a great picture of Taylor on the runway in the finale I will post today and hopefully have some better ones next week. I will post a picture of her putting her hand print on the Hyundai car as well on the photo page link below.

Asking for prayers in treatment guidance and that Taylor's lungs heal soon. Mary Kay

Sunday, April 2, 2006 6:27 PM CDT

Last week was another hectic week. Taylor's counts were pretty good last Monday. Her platelets were 63 which was good/bad news. She actually started recovering from this last round quicker than she had in 6 months. This was the round that has been the harshest on her, but yet she started recovering the quickest. (Be careful what you pray for!) I was torn because that meant she could quite possibly qualify for chemo on Thursday which was exactly 3 weeks since her last round of chemo. I knew that if she got chemo she would not feel up to doing the fashion show Tuesday night which is very important to her. I didn't want to hold chemo because I feel like I'm playing with fire, but she wanted to be in the show too so I was overwhelmed. I prayed for God to guide us in this decision.

Well I guess going back to school last week affected her counts because when I took her in on Thursday her platelets had not budged so she didn't qualify. She has felt pretty crummy this weekend as she started getting sick with a bad cough, runny nose and sore throat. She looks very pale today and she started having a bloody nose again yesterday which all means her counts probably are going down rather than up. We go in again tomorrow to potentially get an Avastin infusion, but it will depend on her counts. In addition I will have the doctors take a look at her to make sure she doesn’t have bronchitis, or strep or anything like that. Everyone in the house has been sick except for me. Grammy had the flu, dad had bronchitis and Jordan had a bad cold a few weeks ago so I guess it finally caught up with her.

Relay for Life went very well and we exceeded our $5,000 goal for our team. All the funds go to the American Cancer Society. Thank you for your support everyone.

I have fallen behind on my reading Purpose Driven Life so I don't have any great revelations to share this week. I had a big test last week so I had to spend a lot of time studying. I will try and get caught up this week. The past week was about serving others with your talents and talks about how we all have gifts to share.

Cary has been going to the gym with me for the past 5 weeks. Last Saturday our gym had a GNC spokesperson plugging some new weight loss products and vitamins. I have been working out for 22 years and I have never seen a gym allow a GNC person to speak before class as well as give out prizes of products to the top three people who gave the best effort in class. Each prize had that powder stuff in them for different purposes along with vitamins and stuff. I don't like that powder stuff, but Cary bought a couple of canisters of that stuff 5 weeks ago that he has only used a few times. This stuff is expensive as you probably know. The top prize package was worth $200, and then it went down a little for 2nd and 3rd place. Well you should have seen all the people in the class kicking their legs up over their heads, whooping and hollering and trying to make a big production to get picked. I was watching them in the mirror and got a kick out of them. I continued the class just like any other day.

I began to formulate my plan and strategy. No one at this gym knows me personally even though I have been going for 5 years. I just go in, take the class and leave. The instructors teach on a stage and they teach towards you so you have to teach like you’re in a mirror, which means you are opposite the class. On the last song track the instructor said, ok, its time to WOW me. She is very extroverted to say the least. I grabbed my step and went up to the stage and told her to scoot over. I know all the moves by heart of all the tracks that are taught as I taught aerobics for 14 years, but I retired 5 years ago. I guess once you learn how to memorize the steps to the 8 count it sticks with you forever and comes naturally. No one there knows I taught as I never told anyone and I'm pretty quiet there. You should have seen the look on her face as well as everyone's in the class. I had them all pumped up and it felt great! I have thought about going back to teaching many times, but just don't have the time or passion to do it all the time anymore. Needless to say I won first place so I got the $200 prize pack to give to Cary (mainly so we don't have to buy it!) The instructor told me how she just loved me spontaneously doing that, but would have never expected that from me because I'm so quiet. (Little does she know)hahaha. I decided I had the talent so I might as well take advantage and use it as I don't have many areas I can say that in.

I began to think that is the way God is with us. He has a plan, but waits many times before he implements it. He does not expect us to perform to acquire his love and support, although many times we think we have to in order to earn his love. I guess we all do have talents; sometimes we don’t use them or realize them. I know God has a plan and he will reveal it to us. Many times I couldn't see him or the path in front of us, but he has "WOWED" us so many times when we least expected it. Even when he has been quiet and watched by the sidelines; he is with us.

We had a not so pleasant talk with the doctor this week, but he did say that Taylor is a miracle which we already know. Our path for Taylor's treatment will be determined by her scans which are due this month. We are going to do one more round of the same chemo she has been on potentially on Thursday. I am terrified due to all the adverse reactions she had last time, but we don't have a lot of options. They are not going to reduce the dose either since so far it has been working to keep the disease at bay. You risk losing what we have gained if we change protocols and/or the dose. We are still talking about transplant, but we have to do scans first to determine this. Taylor is also struggling with her breathing again and we have a pulmonologist appointment on the 11th as well.

Please continue to pray for Taylor especially this week. Pray for healing of her sickness and that she does not have anything serious. Pray for things to go smoothly this week in her treatment. Pray that she will be able to be part of the Fashion show as it is so important to her Tuesday night. Thank you for all your love and support. God Bless.

Fashion Funds the Cure
April 4, 2005 6:00-9:00pm
Saks Fifth Avenue, Westshore Plaza

Mercedes-Benz USA, Saks Fifth Avenue and the Pediatric Cancer Foundation invite you to Fashion Funds the Cure – a private shopping event and fashion show on April 4th, from 6:00-9:00pm. Join us as we pay tribute to the indomitable spirit and inspiring beauty of the children in our community who are battling cancer. Participating celebrities include Brad Richards of the Tampa Bay Lightning, Shane Stafford and Nyle Wiren of the Tampa Bay Storm, former NFL Player Pete Pierson and radio personalities Chadd and Kristi Thomas. 10f all in-store sales for the evening will be donated to the Pediatric Cancer Foundation. $50 donation per person. Advance reservations can be made by calling (813) 269-0955 or visit www.pcfusa.org.

Saturday, March 25, 2006 1:11 PM CST

Taylor had a much better week this week. We went to the hospital on Monday and Thursday and remarkably she didn't need anything. She is also walking much better! This is definitely an answered prayer. She is still limping slightly, which is pretty much the same limp she had prior to getting chemo earlier in the month.

On Wednesday we went to a luncheon to be part of a check presentation to the Pediatric Cancer Foundation from the Catch For The Cure Campaign that went on during football season. Michael Clayton from the Tampa Bay Buccaneers donated a certain amount each time he made a catch over the course of the season. Crown Eurocars matched his donation for a total of $60,000 that was presented on Wednesday to PCF. Taylor was on the billboard with Michael for this campaign this year. The billboard was in three locations in the Tampa area.

The kids were all presented with autographed footballs from Michael along with an autographed miniature billboard replica. Michael was so sweet in that he had all the kids autograph his replica billboard. There were a total of 5 kids on the billboard with him. We enjoyed a great lunch at Flemings Steak House, which is a corporate sponsor for PCF. We were also told that PCF is still getting donations everyday from the Breakfast of Hope that we spoke at on March 14th. They are up to almost $70,000 from the Breakfast so far. They have raised a quarter of a million dollars for the Sunshine project which is a project to find a cure for pediatric sarcomas just since this project launched in November. The $5 million dollar project goal is not so far away. This is amazing as they don't really advertise since they spend all the money they receive on research.

As far as treatment goes, the doctors talked to All Children's about setting up an appointment for Cary and I to revisit the facility in case Taylor will need to get Jordan's stem cells in the near future. St. Joe's does not have a transplant unit so we can't do the procedure there. It is supposed to be an outpatient procedure, but if anything goes wrong I don't want to stay there as they don't have a very high success rate with transplant. This would only be a stem cell rescue, not actual transplant but I still don't have alot of confidence there. (just my opinion)

Taylor is very particular about people she doesn't know touching her so it would be very difficult for her to endure. Our doctor said that he talked to the doctor. who is the head of the transplant unit at All Children's in St. Pete and he mentioned doing a stem cell transplant to us again. He is currently at an oncology conference and was going to talk to other doctors there and get back with our doctors this week.

I have never closed the door on this, but for a transplant to work for Taylor she would have to have no evident disease and we're not there as yet. (that we know of). Plus pulmonary failure is one of the biggest obstacles to overcome during transplant. Since Taylor's lungs are so compromised we don't know if she could endure the transplant. The chemo for the stem cell transplant basically destroys all your stem cells and/or bone marrow and then you receive a donor's stem cells. If they don't graft into your marrow, you don't survive. Taylor has an identical twin so hopefully they would take as it would be like getting yourself back only better. Jordan's cells have never been exposed to chemo or cancer. We also would not have to worry about rejection, which is another reason people don't survive transplant.

If we did this procedure we would probably go to Sloan Kettering in NY as they have one of the highest success rates in the country, but we know people who have been there for a year and a half since getting transplant and they are still fighting infections, rejection, heart problems, lung problems, etc. etc. It is so severe you have to get all your immunizations all over again and start over, so this is not an easy decision. Your immune system actually becomes the person's stem cells you receive and you no longer have your own. Basically, the decision has always been made for us by Taylor's health.

We go back to the hospital Monday for labs and which will determine how the rest of our week will go. Taylor is much better, but she is really struggling physically with being out of breathe and tires very easily. She is her sweet, witty self again. Praise God!

I am still studying the Purpose Drive Life and today's reading is Day 28, "It Takes Time". It really hits home in our situation as sometimes you wonder where you are being led and how it will all work out and why all this is happening.

I am sure that God who began the good work within you will keep right on helping you grow in his grace until his task within you is finally finished on that day when Jesus Christ returns. Philippians 1:6

When Habakkuk became depressed because he didn’t think God was acting quickly enough, God had this to say: “These things I plan won’t happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass. Just be patient! They will not be overdue a single day!” Habakkuk 2:3 (LB)

Please continue to pray for Taylor's COMPLETE HEALING on earth and guidance in our decisions for her treatment.

Only a few more days until the Fashion Show on April 4th to benefit the Pediatric Cancer Foundation.

See photo link below to see a copy of the invite which has Taylor's picture on it. It is not a very good copy. I scanned it, but couldn't figure out how to minimize it so I took a digital picture of it. I can't get the flash to work with me. I'm sure it's the camera, not the operator. (smile)

We are also participating in Relay For Life, through the American Cancer Society on March 31st at Newsome High School in Fishhawk. I am on the Grace UMC Team. We have a putting green, an autographed Brad Richards jersey from TB Lightening, an autographed jersey from Michael Clayton from the Bucs and two tickets to the Hockey game on April 15th up for grabs at our booth. So all you locals come see us!

Relay For Life at FishHawk - Newsome Highschool 3/31/2006 6:00 pm - 4/1/2006 12:00 pm
http://www.cancer.org/docroot/par/content/PAR_1_Relay_For_Life.asp

Fashion Funds the Cure
April 4, 2005 6:00-9:00pm
Saks Fifth Avenue, Westshore Plaza

Mercedes-Benz USA, Saks Fifth Avenue and the Pediatric Cancer Foundation invite you to Fashion Funds the Cure – a private shopping event and fashion show on April 4th, from 6:00-9:00pm. Join us as we pay tribute to the indomitable spirit and inspiring beauty of the children in our community who are battling cancer. Participating celebrities include Brad Richards of the Tampa Bay Lightning, Shane Stafford and Nyle Wiren of the Tampa Bay Storm, former NFL Player Pete Pierson and radio personalities Chadd and Kristi Thomas. 10f all in-store sales for the evening will be donated to the Pediatric Cancer Foundation. $50 donation per person. Advance reservations can be made by calling (813) 269-0955 or visit www.pcfusa.org.

Monday, March 20, 2006 4:22 PM CST

Happy Spring everyone!

The girls and I spent a luxurious day today at St. Joseph's spa and resort on their first day of Spring Break. We had a great lunch consisting of chips and tuna fish straight from the cafeteria chef at St. Joseph's.
Ok, I'll get a grip now.....hahaha

Taylor's ANC did start to recover today so she was able to get the Avastin today and she didn't have any reactions thankfully. I had them give her one more dose of GCSF today via IV so I wouldn't have to give her an injection today. We are going to try and go without tomorrow and Wednesday and recheck her counts on Thursday. The GCSF stimulates stem cells so she can produce white cells. As soon as she goes off of the medication she drops considerably, but she had severe leg pain on Saturday, which could mean it is too much so we are going to try a few days without and see if she can maintain on her own.

Taylor is limping significantly since getting chemo on March 9th and 10th. I am terrified again as she is compromising significantly on her left side which is where the tumor is on her iliac (pelvis area). She was limping slightly prior to getting chemo, but only something I notice. I hope that it's just her legs being sore and that it doesn't mean the tumor is growing again.

Yesterday, Taylor and I had the pleasure of going to Saks Fifth Avenue for our mother/daughter makeover/salon day. See we actually did go to the spa. They come to pick us up in a Mercedes, as Mercedes is one of the sponsors for the Fashion Show for the Pediatric Cancer Foundation on April 4th. I really enjoyed meeting our "Driver" I could have really used a "Driver" today let me tell you. That drive to the hospital really gets to me sometimes. Anyway, they serve the moms champagne and the kids cokes and food. It was so cold in the store yesterday, that they gave us furs to wear to keep us warm. Taylor wore a mink stole all day. I took lots of pictures of her in the mink stole as well as another fur jacket that she let me wear momentarily. (she needed two I guess). The stole price tag was $3300.00 and the fur jacket was $995.00. Taylor thought it was $9.95 and wanted me to get it for her. I'm like no honey; it has a few more zeros in the dollar figure. Taylor picked out her outfit for the fashion shown on April 4th so she had a good time. This week's picture is of Taylor after her makeover on the Cleopatra chair in Saks with her mink stole. She really didn't want to give it up let me tell you. I added a few more photos on the photo link below.

We don't have to go back to the hospital until Thursday so we'll try and go have a few fun days in between. Unfortunately, my spring break was last week so I have class this week, but we'll work around it.

Please continue to pray for Taylor's healing and guidance in her treatment plan.

No matter what happens, always be thankful..this is God's will for you.
1 Th:5:18

Pour out your heart to God, for He is our refuge. Ps. 62:8

If you would like more information on the fashion show on April 4th or would like to donate to the Sunshine Project which is a project to find a cure for Pediatric Cancer, please visit their website at www.pcfusa.org.

Fashion Funds the Cure
April 4, 2005 6:00-9:00pm
Saks Fifth Avenue, Westshore Plaza

Mercedes-Benz USA, Saks Fifth Avenue and the Pediatric Cancer Foundation invite you to Fashion Funds the Cure – a private shopping event and fashion show on April 4th, from 6:00-9:00pm. Join us as we pay tribute to the indomitable spirit and inspiring beauty of the children in our community who are battling cancer. Participating celebrities include Brad Richards of the Tampa Bay Lightning, Shane Stafford and Nyle Wiren of the Tampa Bay Storm, former NFL Player Pete Pierson and radio personalities Chadd and Kristi Thomas. 10f all in-store sales for the evening will be donated to the Pediatric Cancer Foundation. $50 donation per person. Advance reservations can be made by calling (813) 269-0955.

Thursday, March 16, 2006 3:45 PM CST

Please keep the prayers coming for Taylor. Her ANC was "0" today and she had to get platelets again. She just got them on Tuesday and normally they last 72 hours, but they were lower today than they were on Tuesday. We have to go back tomorrow and Saturday since her counts are so critical. Pray that she does not develop a fever or infection due to not having an immune system.

March 14th 2006:

I just wanted everyone to know that Taylor is doing "ok". We have managed to stay out of the hospital so far, but she is definitely not feeling well. She has been having problems walking, due to her legs being so achy from the chemo. She is also having problems breathing, mainly out of breathe and very weak. She is having neuropathy in her fingers which means she can't feel them. She is very scared that she won't get her feeling back in them and I think that is taking a toll on her. She asked me last night if her feeling would come back and I told her I hoped so, but I didn't know. The Paxilataxel causes this side effect.

Taylor was evaluated by a doctor yesterday and the doctor confirmed that she does have mouth sores. Basically if the toxicity level is too high from chemotherapy it will destroy all the lining in the mouth, tongue and esophagus and on down the line. She has been taking her "magic mouthwash" everyday so hopefully this will help but she has not even began to hit her Nadir (low). It is very scary that we finished the chemo Friday night and this started happening Saturday afternoon. This has never happened before on this protocol. She also woke up with a pretty bad nose bleed on Monday as well as this morning.

The doctor didn't think that mixing the drugs around should have affected her. The doctors think it is the accumulation of long term chemo that has caught up with her. I also mentioned that I felt this round may destroy the rest of her marrow and that we may be looking at using Jordan's stem cells and that we needed to formulate a plan as St. Joe's cannot do this procedure. It is taking Taylor 5 weeks to recover, when it should only take 3. I talked to another doctor 2 weeks ago and asked when do we look at using Jordan's cells and he said when it gets much past a 5 week recover time. We might be there now. Taylor had to get platelets yesterday, not even 4 full days from finishing the chemo.

We did attend and speak at the Breakfast of Hope yesterday. I was really pleased with the turnout, about 300 or more people. They filled up a couple of "ballrooms" at the breakfast. Taylor struggled with her breathing to read her little speech, but she did it. I had both girls on stage so everyone could see the physical differences between the two girls since Jordan is now about 6 inches taller than Taylor. Jordan said a few words as well. I am very proud of both of the girls.

Yesterday at the clinic a child "coded". I hear "codes" called all the time at the hospital and always listen for them as we know several children in the hospital at any given time. I listen for "Code Blue A" which is for an adult or "Code Blue B" which means it is a child. My stomach always flips when I hear "Code Blue B." I was totally amazed as less than a minute about 50 doctors and nurses were in the room. Our nurse was the first one on the scene as well as the other nurses and doctors in the clinic. I was so impressed as when the code was happening the nurse glanced at Taylor's IV on her way to the other child to make sure Taylor would be ok while she was in the middle of a code. The other clinic nurses came to make sure Taylor and I were ok as well. Although I challenge the doctors and nurses all the time with Taylor, I am truly amazed and grateful for their knowledge and abilities. They revived the child and it was amazing to see. I will say I was even more humbled when I walked out of there yesterday than when I walked in.

As they took the child out her mom said "It's ok baby" as she opened her eyes. As mother's we see our children go through a lot of painful things, but we have to be strong and reassure our children they are going to be ok. I was struggling over the past few days and told God I didn't know how I could keep doing this day after day and be strong for Taylor when I was falling apart inside. I believe we were in the middle of that situation for a reason as I saw the strength in that mother, in the worse possible moment of her life. Yet she was telling her daughter it was going to be ok.

Folks this is everyday life in the cancer world. It is heartbreaking. We are so fortunate to be a part of the Sunshine Project, which is a collaboration of many specialists and researchers to find a cure for pediatric sarcomas and all pediatric cancers. If you would like to donate to help find a cure for these diseases, please visit the PCF website at www.pcfusa.org.

Please pray for Taylor's healing and that she will start to feel better soon. We have to go back to the hospital Thursday and Friday this week so please continue to keep her in your prayers. Please pray for that mother and daughter that God will see them through.

"When I had lost all hope, I turned my thoughts once more to the Lord." Jonah 2:7

Wednesday, March 15, 2006 6:27 AM CST

I just wanted everyone to know that Taylor is doing "ok". We have managed to stay out of the hospital so far, but she is definitely not feeling well. She has been having problems walking, due to her legs being so achy from the chemo. She is also having problems breathing, mainly out of breathe and very weak. She is having neuropathy in her fingers which means she can't feel them. She is very scared that she won't get her feeling back in them and I think that is taking a toll on her. She asked me last night if her feeling would come back and I told her I hoped so, but I didn't know. The Paxilataxel causes this side effect.

Taylor was evaluated by a doctor yesterday and the doctor confirmed that she does have mouth sores. Basically if the toxicity level is too high from chemotherapy it will destroy all the lining in the mouth, tongue and esophagus and on down the line. She has been taking her "magic mouthwash" everyday so hopefully this will help but she has not even began to hit her Nadir (low). It is very scary that we finished the chemo Friday night and this started happening Saturday afternoon. This has never happened before on this protocol. She also woke up with a pretty bad nose bleed on Monday as well as this morning.

The doctor didn't think that mixing the drugs around should have affected her. The doctors think it is the accumulation of long term chemo that has caught up with her. I also mentioned that I felt this round may destroy the rest of her marrow and that we may be looking at using Jordan's stem cells and that we needed to formulate a plan as St. Joe's cannot do this procedure. It is taking Taylor 5 weeks to recover, when it should only take 3. I talked to another doctor 2 weeks ago and asked when do we look at using Jordan's cells and he said when it gets much past a 5 week recover time. We might be there now. Taylor had to get platelets yesterday, not even 4 full days from finishing the chemo.

We did attend and speak at the Breakfast of Hope yesterday. I was really pleased with the turnout, about 300 or more people. They filled up a couple of "ballrooms" at the breakfast. Taylor struggled with her breathing to read her little speech, but she did it. I had both girls on stage so everyone could see the physical differences between the two girls since Jordan is now about 6 inches taller than Taylor. Jordan said a few words as well. I am very proud of both of the girls.

Yesterday at the clinic a child "coded". I hear "codes" called all the time at the hospital and always listen for them as we know several children in the hospital at any given time. I listen for "Code blue A" which is for an adult or "Code blue B" which means it is a child. My stomach always flips when I hear Code Blue B. I was totally amazed as less than a minute about 50 doctors and nurses were in the room. Our nurse was the first one on the scene as well as the other nurses and doctors in the clinic. I was so impressed as when the code was happening the nurse glanced at Taylor's IV on her way to the other child to make sure Taylor would be ok while she was in the middle of a code. The other clinic nurses came to make sure Taylor and I were ok as well. Although I challenge the doctors and nurses all the time with Taylor, I am truly amazed and grateful for their knowledge and abilities. They revived the child and it was amazing to see. I will say I was even more humbled when I walked out of there yesterday than when I walked in.

As they took the child out her mom said "It's ok baby" as she opened her eyes. As mother's we see our children go through a lot of painful things, but we have to be strong and reassure our children they are going to be ok. I was struggling over the past few days and told God I didn't know how I could keep doing this day after day and be strong for Taylor when I was falling apart inside. I believe we were in the middle of that situation for a reason as I saw the strength in that mother, in the worse possible moment of her life. Yet she was telling her daughter it was going to be ok.

Folks this is everyday life in the cancer world. It is heartbreaking. We are so fortunate to be a part of the Sunshine Project, which is a collaboration of many specialists and researchers to find a cure for pediatric sarcomas and all pediatric cancers. If you would like to donate to help find a cure for these diseases, please visit the PCF website at www.pcfusa.org.

Please pray for Taylor's healing and that she will start to feel better soon. We have to go back to the hospital Thursday and Friday this week so please continue to keep her in your prayers. Please pray for that mother and daughter that God will see them through.

"When I had lost all hope, I turned my thoughts once more to the Lord." Jonah 2:7

Sunday, March 12, 2006 4:38 PM CST

The past few days have been rough ones. Taylor was admitted on Thursday. Her platelets were exactly 75,000 which is what they needed to be to qualify for chemo. Things actually went very smooth until we started chemo. The nurse did a push of Anzamet, which is an antinausea drug and then pushed in saline very fast. Taylor is extremely sensitive to everything. Then the nurse immediately started Carboplatin.

Immediately, Taylor threw up, which has never happened before on this protocol. We didn't even have a bucket in the room yet. She was sitting up playing Nintendo when this started happening. She then said she felt heavy, like she was on the floor, which meant to me that she was probably going to pass out. The nurse and I moved her to the bed and she began screaming again, that her stomach hurt severely and then she began coughing again and saying that her back and chest hurt. I asked the nurse to stop the Carboplatin. They paged the doctor and he stayed in the room with us until she was ok. Taylor was so scared that when Dr. Rossbach started to leave, she started crying for him to come back. Taylor hates all doctors...well except for Dr. Wynn so this was very out of character for her. They gave her some hydrocortisone and Adavan. It took about an hour before she felt better. They started the Gemcitabine and that went in ok and then the Paxilatoxol which runs over 24 hours. The pharmacist mixed it different. Instead of one bag, the pharmacist mixed two bags, which should be the same dose, just in two bags rather than one, but I'm very scared it wasn't.

Taylor made it through the night ok, after many drugs. The next morning she seemed ok, but Dr. Tebbi advised me to tell her that she would have to stay until Saturday morning to monitor her. She began to beg me not to make her stay and threw a hysterical fit that everyone heard, including the doctor. I reluctantly went back and asked him again, that if she was ok and didn't have any more reactions, could we go home Friday night. He agreed, but if she had any reactions at all she would have to stay. I agreed.

They gave her the rest of the Carboplatin after the 24 hour drug ran. She had gotten about half way through it the day before. She was very drugged up Friday night as they gave her more Hydrocortisone and Adavan, Benadryl, Decadron in addition to the chemo drugs to keep her from reacting. Not all at the same time, but they were all in her system. We made it home Friday night around 8:00 p.m. I can't say it was the Carboplatin that made her react. I think it was the fast push of Anzamet and saline and not allowing enough time for it to get into her system before starting chemo.

Taylor has not felt well at all. She has not had any fevers, which is an automatic admission, but she feels really bad. She woke up last night with "Night Terrors". She woke up in a panic crying and walking around the room saying all kinds of things that don't make sense. She finally laid back down. This always happens after getting this chemo even though they tell me it's not related....it is! She has no memory of these episodes. These drugs have plant derivatives, metal derivatives and who knows what else.

She keeps saying her cheeks are hot and woke up this morning with a few little mouth sores. I called the doctor and he called in some "magic mouthwash" to help prevent more from forming. This tells me that the toxicity level was too much, so I am scared the pharmacist mixed the drugs wrong since they were mixed differently. The nurses check this with each other very carefully, but anytime you change anything in the way chemo is delivered it affects the body. It must be delivered exactly as it is supposed to be and delivered timely or it is not the same. She has never gotten mouth sores before on this protocol. It could have been that switching the carboplatin around affected her.

Taylor insisted on going to church this morning, but she has been in bed since. I keep checking on her about every 30 minutes as she is asleep. I am very scared she is going to wake up with fever and we will be admitted. This has happened too many times and this is the way it starts.

In the midst of this crisis my pastor showed up unexpected at the hospital. He was there to see another family as well, but he said he felt a strong urge from God to come to the hospital on Thursday. He had no idea we were going to be there. We had a wonderful talk and I thank God that he was there to comfort me, because it is a horrible thing to helplessly watch your child suffer.

Please pray for Taylor. Please pray that she feels better and mouth sores don't develop. Pray she doesn't get a fever and that she will start feeling better soon. I don't know how Tuesday is going to go as we are supposed to speak Tuesday morning for the Pediatric Cancer Foundation. I hope all will go well, but I fear the worse. Please pray for me as I am really a total wreck emotionally and I need to be strong for Taylor.

The picture this week is of the girls washing Grammy's car the day prior to Taylor's admission. They basically washed each other as they are soaking wet in this picture.

Therefore do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
2 Corinthians 4:16-18

If you would like to donate to the Sunshine Project, which is a research project to find a cure for pediatric sarcomas, please visit their website at www.pcfusa.org.

I also had to remove our email address from the site as we started getting predators sending us messages to solicit personal information and they had to get our email address off this site as they played the "cancer card" as well as knowing other personal information they would not have known unless they visited this site. One even offered us 19.6 million dollars if we would contact them via email and give them our bank account numbers so they could transfer the money into our account because they were dying from an unknown cancer so they had no use for the money. Yea right! It is very sad that people do this. Pray for them too.

Monday, March 6, 2006 11:23 AM CST

Hello everyone, Wow what a response from last week from people. I am always amazed how many people this site reaches when I really have only told a handful of people about it over the years. There were over 2500 hits since the last entry which I think touched alot of people in many different ways. The things I shared were things I hadn't shared with people in years, but felt led by God that maybe things in last week's journal would help others in many different ways. I added a photo of my brothers, my mom and I taken about 17 yrs ago on the photo page link below. I had so many people ask me about Johnny that I thought I would include a picture of him on the site. It was before digital cameras for sure. Try not to be blinded by my "blue eye shadow" in the picture. Guess I was trying to make blue eyes or something.

Well Taylor was not admitted as expected...by me anyway. The nurses were surprised when they had to cancel her admission, but I think I have it down to a science now so I was not expecting to be admitted. Her platelets were only 43,000 and they had to be 75,000. We will try again this Thursday and I'm guessing we'll be cutting it close. She might qualify this week so we will see. Taylor did get Avastin last Thursday with no reactions this time! Praise God

We went to the Strawberry Festival on Saturday as Jordan marched in the parade. Her twirling team won first place in the parade competition. Way to go Jordan! Plant City is very well known for growing strawberries. The festival is like the fair only you have never seen strawberries prepared so many different ways. It is a pretty big festival. You should have seen the line for strawberry shortcake! Plant City is one of the few small towns left that has that "hometown feel" and reminds me of where I grew up in Bartlesville, Oklahoma. I go to school at the campus there because it is the only place around here where you can still see Wrangler Jeans. hahaha They have a huge agriculture program there. I have found that all the campuses in the Tampa area, I like that one because the people are very genuine there.

When I was coming home from class 3 weeks ago I saw two jets practicing maneuvers on my way home. I go a back way which is through orange groves and strawberry fields. It is a fun drive....well as fun as it can get. I could make that drive with my eyes closed. Anyway, I got out of class just in time to see these two jets making a heart in the sky. It was amazing to see this. I felt it was God's way of showing his love at that moment. We get a lot of planes in our area as it must be open air space. We see alot of military planes; due to MacDill Airforce base being here and biplanes practicing acrobatics.

My dad is a pilot as well as my grandfather, and both uncles so I grew up spending alot of time at the airport. My grandfather used to build biplanes and was well known in the biplane world before he passed away. My dad takes planes apart and puts them back together with new, turbo engines and whatever else he can think up to improve them and then resale them. I can't even open a cereal box right. He continues to fly and has a Captain's rating although he doesn't fly commercial. I was fortunate in that we flew everywhere when we were kids because of my dad. I never had any fear of flying and loved it. I never thought about plane crashes or any terrorists. I can remember a few times when alarms were going off and seeing other planes flying way too close to us in the sky. We thought it was cool, but my dad would be using some colorful language in the pit. We would be laughing about it as kids as we had no idea what was going on.

I don't get to fly with my dad much anymore as he now lives in Oklahoma and I live in Florida. However, before we moved here he was in Florida and we were in Oklahoma. We have never lived in Florida at the same time...not on purpose. hahaha He agreed to fly to Oklahoma and pick up our family including the girls and then go get my other brother Michael in Dallas and take us back to Florida for Thanksgiving. I began to get really nervous because I started fearing we might crash. I had also developed a fear of flying commercial too. I still flew, it's just I was really scared. It was really all about feeling out of control.

A week before Thanksgiving I was pulling out of the driveway to go to work. We had this concrete thing in the middle of the street in front of our house that had shrubs in it. I just backed out and didn't look and I thought to myself, I should have looked both ways because a car could have been there and I would have hit it. I pulled to the entrance our neighborhood to turn right to go to work. I only looked to my left and never looked right. As soon as I pulled onto the road, a huge 4 x 4 truck was passing another car in double yellow lines on my side of the road. I don't know how, but in a split second I swerved off the road to the right so the truck would not hit me. If I had been hit by this huge truck in my little bitty car I have no doubt I would have been killed instantly. I worked auto claims so I know how it happens and what the results are.

At that moment I realized I had a premonition and that an angel took care of me and moved me off the road. I don't know how I got there and if I had pulled out a split second earlier I wouldn't have had any time at all to react. I know God was telling me I am not in control of my life or my children's life and he would take care of us so let him take the wheel. Have you heard that song out called Jesus Take The Wheel? I no longer have any fears of flying and continue to be fascinated everytime I see planes or fly in them. In fact, I would love to spend some time on an aircraft carrier, but probably will never have the opportunity. I mean one where they are taking off and landing, not an exhibit. Ok...like Top Gun...now I'm really dating myself.

There is a big difference in flying commercial and flying in a private plane. I sat with my dad in the cockpit at 5,000 feet. At 5,000 feet you are flying in the clouds, not above them. You cannot see anything around you but the sky and clouds. You can't see what you are flying into. Each time we would approach a cloud it looked like a huge mountain of snow that we were going to run into. I cringed as we would approach it and hold on tight. Each time we would come out the other side of the cloud without incident. I told my dad how much I admired him and his flying ability. He has to totally rely on instruments and the air traffic controllers to guide him. You have no choice about giving up control and having to trust someone else to guide you through the clouds. The picture this week is of Taylor when she was about 4 in my grandfather's airport hanger. You can't see the picture clearly, but her shirt says, "Grandpa's Little Copilot".

That is much like our lives in dealing with having a child with cancer or really life in general. We have to trust our instrument, which is God. We think we have control of our lives, but it is just an illusion. We think we have control of other peoples lives, especially our children's, but it's just an illusion. I did everything in my power to protect my girls from everything in this world that could bring them harm. Unfortunately, I could not protect Taylor from cancer. I realized that only God has control. God does not cause cancer, but it is through tragedies that he performs miracles and reveals himself. Live in the Unseen, not Seen.

So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18

We are participating in a few events for the Pediatric Cancer Foundation. Taylor and I are speaking at the breakfast on March 14th as well as some other families. Taylor is participating in the Fashion Show on April 4th listed below. PCF events are always professionally and beautifully done. If you would like more information or would like to donate to the Pediatric Cancer Foundation, please visit their website at www.pcfusa.org.

Breakfast of Hope
Tampa Waterside Marriott Hotel, Salon E & F
March 14, 2006, 7:30AM

Join corporate chair Terry Sullivan of Fleming’s Prime Steakhouse and Wine Bar and family chair Nicole Dumke for a delicious breakfast at the breathtaking Waterside Marriott. Hear personal stories from children and families who have been affected by childhood cancer and understand why the research funded by the Pediatric Cancer Foundation is so critical. Whether as a sponsor, donor, or breakfast guest, your involvement and dedication to the special children we honor through this event will make a significant contribution to the amount of research our Foundation funds and will allow researchers to continue to make medical breakthroughs that will lead to the cure.

Fashion Funds the Cure
April 4, 2005 6:00-9:00pm
Saks Fifth Avenue, Westshore Plaza

Mercedes-Benz USA, Saks Fifth Avenue and the Pediatric Cancer Foundation invite you to Fashion Funds the Cure – a private shopping event and fashion show on April 4th, from 6:00-9:00pm. Join us as we pay tribute to the indomitable spirit and inspiring beauty of the children in our community who are battling cancer. Participating celebrities include Brad Richards of the Tampa Bay Lightning, Shane Stafford and Nyle Wiren of the Tampa Bay Storm, former NFL Player Pete Pierson and radio personalities Chadd and Kristi Thomas. 10f all in-store sales for the evening will be donated to the Pediatric Cancer Foundation. $50 donation per person. Advance reservations can be made by calling (813) 269-0955.

Please continue to pray for Taylor's complete healing on earth and that the DREAM TEAM will find a cure for Pediatric Sarcomas and Pediatric Cancer.

Wednesday, March 1, 2006 4:31 AM CST

Good morning everyone....it is morning I guess. I have been up since 3:30 a.m. as I cannot sleep. I guess it has to do with many things, but some very specific things in particular. Yesterday was the one year anniversary that they officially told us that Taylor had relapsed. We already knew it was happening as she was displaying some of the same symptoms that she had at her initial diagnosis so we knew. Although the relapse really started in January of last year, the official doctor word was given to us on February 28, 2005.

The day we got the call from the doctor it was one hour before we were supposed to take Taylor to a hotel to meet the Children's Cancer Center group as they were going to go on the annual ski trip with the kids to Wisconsin. You take them to a hotel the night before the flight leaves because they leave around 6:00 a.m. Cary and I did not tell Taylor or Jordan about the call from the doctor. It was so hard trying to be happy for Taylor in the car on the way to the hotel as we had this heavy burden on our hearts. We did not want Taylor to miss out on having an experience of a lifetime so we let her go. She was gone for five days so we had too much time to really feel what it would be like if we were to loose her. It was a heart wrenching five days, but when she called us from Wisconsin she was so happy as it was snowing. She called and said "mommy it is snowing and there is snow everywhere". I held back the tears and shared the wonderful moment with her. The girls don't really remember snow from living in Oklahoma, and we don't get snow in Florida so it was a big deal to her.

When Taylor relapsed, we were told she had nine months to be with us. Here we are a year later and she is still here. I know that can change at any moment as there is no cure for her disease once a Ewing's patient has relapsed. Usually it comes back with a vengeance, which it did, but miraculously she is still fighting and the chemo is holding the disease at bay. I attribute this to not only medical science, but her determination and hope as well as God's way of performing modern day miracles.

Please bare with me as this all ties in to what is happening in Taylor's life today. I heard the song "Give Me A Higher Love" by Steve Winwood yesterday on the way to class. This song came out in the early 80's and my brother and I used to dance together to that song. We were only 13 months apart and many people thought we were twins as we looked a lot alike except he got the blue eyes I always wanted. My dad lived in Ft. Lauderdale when we were in high school and we still lived in Oklahoma. We went to visit him over spring break and Johnny and I went dancing as the club age at that time was 18. I was 18 and he was 17 but no one really cared then. A band was playing that song in the club and I have always loved that song and remember my brother and I dancing to that song.

When my brother was 24 yrs old he was diagnosed with AIDS. At that time, many people didn't even know what AIDS was or how to treat it. He was a banquet manager at a major hotel at 24 yrs old. One week prior to his death, I called him as I was lonely on a Sunday afternoon. He told me to come have lunch with him at the hotel. We went to lunch in this beautiful room with flowers and plants and fountains all around us. We were the only two people in the restaurant in the hotel except for two men who were fully clothed in robes. I think they were Methodist ministers. We had a wonderful lunch and talk and he walked me outside and stood at the top of the steps and waved good bye to me and told me he loved me. That was the last time I saw him healthy. The next day he was admitted to the hospital as he had pneumonia. I just thought he was sick and he would get better, but he didn't. No one told us what was going on. One day we were told to put on gowns and gloves and that's how we assumed what was going on. I watched helplessly as my brother suffered and struggled to breathe. Before he died he said "I'm not afraid to die as I feel right with God". The day before he died he had a bad episode at night, but he said "it looks like the Wizard of Oz Emerald City".

I was so heartbroken to loose my brother in a week’s time. I had no idea this was happening, but he did. He took out a substantial life insurance policy so my mom would be taken care of. How many 24 yr olds do you know that do that? My mom went to college for the first time at 43 yrs old and earned her Masters Degree and is a licensed social worker. She would have never been able to go to school if he hadn't done that for her. He didn't tell anyone he was sick. I don't know if he even fully understood his disease as there was not a lot known about it at that time.

I look back on that moment in the restaurant which really was a heavenly experience and reflect on it often. A friend asked me last year if I could go to lunch with anyone dead or alive who would it be. I answered immediately, my brother. I suffered from an eating disorder from the time I was 15 until my brother died when I was 25. It was so bad, it totally controlled my life and I had been in the hospital three times it was so bad. I was worse than any alcohol or drug addict as food was everywhere. When my brother died, my compulsion was completely removed from me. It was as if my brother said, I’ll go if you take this from my sister. My brother used to bring me the huge flower arrangements from the hotel every few days while I was in the hospital. He loved me when I couldn't love myself. Many times, I asked God why didn’t he take me, rather than him as I always thought he was a much better person that I was.

My brother died on October 19th. My daughters were born on October 28th. My granny died of lung cancer on February 9th and her birthday would have been February 21st. Taylor relapsed on February 28th. I couldn't figure out why I had felt so much anxiety two weeks prior to all of this and then I realized what was going on. Then when Taylor had a horrible reaction on February 16th, I saw the despair in her blue eyes that I saw in my brother's blue eyes when she was suffering

Here I am almost 20 years later and my daughter is fighting for her life. She is a twin and I just can't imagine Jordan living without her twin, which is essentially herself. I know what this is like since I lost my brother at such a young age and I can't bare the thought of Jordan going through that.

I am studying the Purpose Drive Life again and I always wondered what my brother’s purpose was as he had a short life and many hardships along the way. I always wondered what my purpose was too. One of the things that struck me in that book is it says, you don't get to choose your purpose, God does. I guess that’s why I fight so hard for Taylor and refuse to give up as the medical world has many times. I cannot accept that "there is no cure". Look at all the developments in 20 years with treating AIDS.

I guess that is why I have been drawn to be a Respiratory Therapist as my brother died from a lung condition essentially. Taylor was not able to receive a transplant due to her lungs suffering from chemo and radiation as well as lung metastasis which means the cancer has spread to the lungs and chemo is not able to "knock it out".

Childhood cancer seems to be a silent epidemic in this country as AIDS once was. People who have not been exposed to this world have no idea how bad it is. It can take 10 to 20 years to develop drugs and get them FDA approved for treatment. I fear Taylor may not have that long, although I hope so. Maybe my purpose is to advocate this cause, as I too had no idea this world existed before Taylor got cancer. I believe that Taylor's purpose is to shape our hearts and display God's love through her beautiful smile and see that God is bigger than cancer. I also hope Taylor might be the first person to survive a relapse of Ewing's Sarcoma. We all have a purpose in life, sometimes it is a very rough road and we can't see it and struggle to find it, but it is there if we seek God first in all things.

If you would like to donate to the Sunshine Project which is a research project to find a cure for pediatric sarcomas, please visit their website at www.pcfusa.org.

For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:10

Saturday, February 25, 2006 6:38 AM CST

Well this week has been pretty "normal"....knock on wood. Last week was definitely challenging. I didn't mention that the girl's computer they got for Christmas completely crashed as well. They had only used it for 3 weeks when it crashed last week....as well as everything else last week. They really weren't upset except that Taylor lost all her pictures she took of her cousins while they were at Disney. She deleted all the pictures off her camera so she was really upset because they were gone on the computer and her camera. Fortunately, grandpa has a program that can hopefully recover them off the memory stick. The only issue with that is that he lives in Oklahoma so I guess we will send it to him. Grammy took the computer back to Best Buy and they are going to replace the hard drive so I'm sure it will all work out.

Taylor had a PFT (pulmonary function test) on Monday when we went in to monitor her lung function. My heart sank as the doctors watch the diffuse amount, which is the amount that she can blow out. This test is very difficult and tiring. I try to do all the breathing exercises with her and I can barely do it all so I'm sure she has a hard time. Her lung function diffuse amount is now 49 percent. It was 52 percent prior to radiation. We were told that the radiation would affect her lungs as it destroys not only the cancer cells but the tissue as well. I don't know how low they will let this get until they tell us "no more chemo and/or radiation". I was also sad because I see us getting further and further away from ever getting a stem cell transplant, which is the only possible cure for her disease and even that, is not a guarantee of a cure.

She would have to be in complete remission for it to work and then survive the transplant which is basically like taking you to the edge and then trying to bring you back. God has always directed us in this decision as we have never really had to make it since Taylor's body has made that decision so far.

Fortunately, Taylor didn't need anything this week and we don't have to go back to the hospital until Thursday. She is supposed to be admitted for chemo, but I know she won't make it as her platelets were only 29,000 and they have to be 75,000 to get chemo. If she doesn't get admitted for chemo then she will get Avastin on Thursday.

I struggled this week to recover from last week's events with Taylor. I was pretty much a "basket case" from all the emotional turmoil. I want people to understand that the world in the hospital is such a different world from the outside. You walk into this horrifying environment at times in the clinic and/or the floor for inpatient. You know when you take your child in for a shot or to the doctor when they are sick and they scream. Well this is like this everyday only amplified ten times over. If your child is having an ok day, all the other kids around you are screaming and crying. It is so hard to understand why children have to suffer so much with cancer and blood disorders. The day Taylor had her reaction, two other girls were in there screaming and screaming prior to Taylor getting sick. One girl must have had ITP (platelet disorder) or hemophilia or sickle cell. She kept screaming "no more shots" "no more shots". This went on for two hours. My heart continually breaks for all these kids.

People don't ever think this will happen to them but it does. Cancer doesn't discriminate between race, religion, economic status or even children in a family. We are the perfect example of this as we have identical twins. IDENTICAL, yet one gets cancer and one does not. Taylor's cancer is not genetic, inherited or caused by the environment. They don't know why it happens which is why they can't cure it. It is caused when chromosomes 11 and 22 switch places for some unknown reason and then produce "bad" cells. It is especially hard to see Jordan growing and developing into this young lady and Taylor has not grown in 2 and 1/2 years due to the chemo. Jordan is now 5 inches taller than Taylor. Taylor gets her feelings hurt all the time because she says boys don't like her because she has no hair. They are getting to that age now where they get crushes on boys. We have had many tearful conversations regarding her feelings in this any many more situations in life she deals with.

I know this is tough stuff to comprehend and probably read. Many times I used to look away from mothers with disabled children because I couldn't handle it. Well now I am one of them, but I now understand and see life in a whole new light. I no longer look away, but embrace those mothers and children and know they know what I do. I used to see families at Disney with their Make a Wish shirts on which means their child is probably terminally ill or has had a serious illness. I used to wonder, how could they be here with a smile on their face knowing that they may loose their child. I would never wish this on anyone, but we have been so blessed to have gone through this situation as we are a new family and we cherish every moment of every day.

I guess I'm just plain mad at "CANCER" this week. I want to fix it. I want to make it go away, but it doesn't. I want to take all the suffering and pain away, but I can't. I can only pray for my daughter and other families. I can only help spread the word that we so desperately need to find a cure in this country. Please continue to pray for Taylor's healing and strength. Pray for guidance in her treatment plan and that she won't have any more reactions. Please pray for all children with childhood cancer and their families. Pray for the DREAM TEAM to find a cure for pediatric sarcomas and cancers through the SUNSHINE PROJECT.

If you would like to make a donation to the Sunshine Project, please visit their site at www.pcfusa.org.

You...scheduled each day of my life before I began to breathe. Every day was recorded in your book. Psalm 139:16

Knowing God results in every other kind of understanding. Proverbs 9:10

Sunday, February 19, 2006 4:18 PM CST

This week was definitely very challenging. When we wake up in the morning, we literally never know what is going to unfold during a day. I called to check on our cruise that we won a month ago this week as we were supposed to have received our vouchers 2 weeks ago. The contest is through a lending company...aka, they want you to take out a loan. The lending company president says, "I'm so glad you called Mrs. A. as the company we bought the cruise packages from went bankrupt and we just found out this morning." I just started laughing as that is just the way our lives seem to go. He did say that they were replacing them with another travel agency and that we would have them by March. Anyway, that wasn't really a big deal to worry about as we already felt it was too good to be true kind of thing.

Thursday morning I got a call from Hyundai Hope On Wheels that Taylor was not selected, but she is the alternate. That means that if the person selected cannot fulfill the obligations at any time, they will call us. I told Taylor on the way to the hospital Thursday and she was so upset. She said "Mommy, I thought they would love me". I told her that they did love her, but that sometimes things happen for a reason and we don't understand why they happen at the time, but it is revealed later and we can then understand why. I told her she was one out of hundreds of applications submitted nationwide and what an honor it was. I told her it was like being Ms. America's alternate. Well......she basically told me to be quiet and didn't want to hear anything I had to say. I was very surprised she was so upset as she has done a couple of commercials for different pediatric cancer organizations and she always acted so casually...like she could take it or leave it. She said, it looks like our good luck has run out this week. I told her it hadn't and that sometimes that's just the way life is. I wasn't there for the on-camera interview, but my in-laws said one of the questions they asked her was who she admired most. She told them her mommy because she can do anything. (I've never thought of myself like that). That meant more to me than anything in the world and I told her that was so special to me that she thought that. They also asked her what she wanted to be when she grew up and she said a chef because she loves to cook with her daddy. I hope we can get a copy of the tape sent to them as I would love to have it.

Well I was really put to the ultimate test Thursday at the clinic. Taylor received Avastin as scheduled and they also did a CBC as routine. The nurses nor I figured she would need platelets or blood because her platelets were steady on Monday. Well, the counts came back and her platelets had dropped to transfusion level again. When she gets platelets, she always has to be premedicated to prevent a reaction as she had a reaction her first time she got platelets 2-1/2 years ago. She gets Tylenol and benadryl. Well she got the premeds and then the platelets started running. They ran them through the pump, which they typically don't do because the pump can damage them. She got two huge bags and the side of the port they accessed does not receive platelets very well which is the main reason they ran them through the pump rather than by gravity.

She started saying her head hurt really bad so I asked the nurse to slow them down. Her head began to hurt worse so they slowed it down again until ultimately they had to stop the pump as she was screaming and crying how bad her head hurt. When someone's platelets are as low as Taylor's run they can bleed internally and the brain is a place where it can happen. She was responding so they didn't think that was happening. The doctor ordered a gram of morphine and that made things worse. She began to cough and hyperventilate. Morphine can cause respiratory failure, but she got such a minute dose it shouldn't have really done anything. Unfortunately, then she began to get sick and vomited three times. They decided to let us go home as she became "stable" enough to go home at 5:30. Well she got sick all the way home and I thought about turning around, but she kept saying just take me home, take me home. Taylor gets hysterical if she thinks she is going to be admitted unexpectantly. We finally got home and she got sick a few more times then fell asleep. She woke up again about midnight because her head hurt so bad. I mean it was really bad. I didn't know if her brain was swelling or if she was going to have a stroke. She began getting violently sick and I started to call the hospital and she screamed for me not to. I was afraid to move her as she was so violently sick. I was going to call an ambulance, but I knew the EMT's would not know how to access a port. Taylor was really scared and so was I. Her symptoms were almost identical to when I had meningitis, meaning an infection in the meninges, which is the fluid that surrounds the brain.

Taylor said what is happening to me mommy. We both started crying and she said, I have prayed and prayed and prayed but it won't stop. I said let's pray together and we did. Within five minutes she relaxed and laid on the couch and drifted into a deep sleep. I stayed up all night watching her as I literally thought she might not make it....it was that bad. I know this is hard to explain, but Taylor would not want to be at the hospital if that were to happen. The next morning she woke up drained, but with a smile on her face. I have never been so happy to see her smile again. Thank you God for answering our prayers. Definately a miracle!

In the midst of all of this we got a call from our realtor and we sold our other house Thursday night as well. We had to move because the stairs were too much for Taylor so we took a big risk at getting into the one story we wanted yet not selling the other house. I knew it would sell eventually, but when was the question. I hadn't really prayed about it seriously, but Thursday morning on my way to school I prayed for the house to sell. My gosh it has been for sale for 90 days and it sold that day. There are many houses for sale right now in our community (175) and there are 12 alone on our old street so this is a miracle.

Our day definitely had a beginning, middle and an end. On the way home from the hospital Thursday night the song "Calling All Angels" came on and I never really listened to that song. I was literally feeling that we needed some angels and I feel we were surrounded with them Thursday. The nurse and I believe that the Avastin and Benadryl caused a chemical reaction as this is the third time she has had a bad reaction and all three times it involved benadryl. Of course, there is no information on this as it hasn't ever happened before to anyone, let alone a child. I am asking for an MRI tomorrow and to test her for an allergy to benadryl as it can happen.


Here is a copy of the entry that was sent to Hyundai Hope on Wheels:

Hi my name is Taylor Arrington and I was diagnosed with Ewing’s Sarcoma on 9-26-03. I was only 8 years old at the time I was diagnosed. I was very scared and I didn’t know what to expect. Luckily for me, I have an identical twin sister and a great family who have helped me through it all. My sister Jordan donated her stem cells to help me recover from chemotherapy when I can’t make my own cells. My mom quit her job to take care of me and my dad shaved his head for me because I lost all of my hair. I was in remission for 5 months, but unfortunately I relapsed on my last month of treatment last January, 2005. Basically I have been getting chemotherapy for 28 months now. I try to live a normal life the best I can and attend school most of the time. I made President’s honor roll the first 9 weeks of school this year and made the regular honor roll the 2nd 9 weeks of school. I don’t let cancer run my life. It’s just something I have to deal with everyday and make the best of it. My life has changed a lot over the past 2 plus years and I am now 11 years old. Although I get very tired of getting chemotherapy and I just want to be a normal kid, I have learned to live each day as happily as I can. I hope my story can inspire others to realize each day is a gift and we have to live for today because we don't know what tomorrow will bring.

Please continue to pray for Taylor's healing and that this horrible reaction will not happen again. I think we are all still recovering from the terrifying experience we had. Thank you for all your comments and prayers as sometimes I feel so alone in all of this that it helps so much. God Bless, Mary Kay

Tuesday, February 14, 2006 10:32 AM CST

Happy Valentine's Day Everyone!

We had another busy week this past week. Last Thursday Taylor received platelets again in addition to doing an on-camera interview for the Hyundai Hope on Wheels Kid Spokesperson campaign. They called me late Wednesday afternoon telling me she was one of three finalists nationwide and they wanted a camera interview done and sent to them by Monday, yesterday. I told them that we were going to be at the hospital on Thursday so they would have to do it then as we were going to Orlando. I told the P.R. people at the hospital that we would be there around 9:00 for the interview as well as get Taylor's blood drawn.

Later that night I realized that I had class the next morning from 8:00 - 9:15 a.m. and that I wouldn't have been able to get Taylor to the hospital until 11:00. I'm on my third level of Algebra so I guess I subconsciously block it out that I have to go to class. I have one more level to go and I hope I never have to see it again. All the nurses use calculators anyway to figure doses, so whats the point...right? Since my in-laws were here, I asked them to take Taylor in for the interview and get her started as it takes about 1 to 2 hours to get counts back. My intention was to meet them at the hospital after class. I had to run a quick errand on the way to the hospital so I was just about 10 minutes delayed. As I was on my way to the hospital, my phone rang and it was the school calling telling me Jordan was running a fever and I needed to come get her. So I turned around and picked her up. She had a cough so I knew it was probably developing into strep or a virus. I had to take her to the doctor because I can't take any chances of Taylor getting anything let alone letting Jordan get worse. They were going to Disney Thursday evening so I couldn't send her sick. Fortunately, she only had a virus and tylenol was effective for her fever. Taylor received platelets and the interview was done as well. Cary was in Alabama and my mom was at work so it was a good thing they were here to help.

We had a great time at Disney this weekend, except for it being sooooo cold! We had to buy an extra blanket on Sunday for Taylor as it the wind was blowing and the high was 57 degrees. Our blood has definately thinned down here in addition to Taylor's body temperature not being that of a normal person's. She runs about 96.1 so she was really struggling. We wrapped her up in two coats, two blankets, gloves and a hoodie and she was finally warm. We had her in the wheel chair so she was happy. I told her we could leave, but being the determined girl she is, she didn't want to.

The girls saw their cousins, Megan and Lindze who were there to participate in the National Cheerleading Competition. In the picture, Megan is on the far left, then Jordan, then Lindze and Taylor. Jordan is as tall as Megan who is 17 yrs old...5'1! Sorry Megan.... Jordan is going to be really tall. My gosh all those girls have beautiful blue eyes! I always wanted blue eyes, so I'm glad my daughter's have them.

I saw two girls from other teams have really bad falls. One was so bad they had to change the mat because the girl was bleeding and getting sick. Cheerleading is not cheerleading anymore, as you really have to be a gymnast to make it. Their team did really well, as no mistakes except for a little spacing issues...I didn't notice it. However, they just didn't have the experience of the other teams who were so good they left you stunned. We are very proud of them and so glad we got to see them perform. That was the first time we have gotten to see them compete and apparently the first time their school had been in a national competition in 15 years.

Yesterday we were at the hospital for 8 hours as Taylor had to get blood...just in time for Valentine's Day! Her hemoglobin was 8.0 which is borderline transfusion. They really don't like to transfuse unless they drop below 8.0 unless they are symptomatic. The nurse asked Taylor how she felt and she said really bad. The nurse said she thought Taylor should let her body make it's own red blood cells and Taylor said "NO" I want a transfusion. The nurse just looked at me and said, I have never had anyone ever ask for blood. I said, well this is Taylor not just any kid and she doesn't ask for things like that unless she really needs them. I started cracking up as the she is one of the nurses that has taken care of Taylor since day one and she still never ceases to be amazed at her. It took the blood bank about three hours to get the blood to us and then about 3 hours for the transfusion. I was glad we went ahead with it because when I looked at her monos, which help you recover, were really low so she probably would have continued to drop.

Well hopefully we will hear something from Hyundai by the end of the week. The grandparents said the interview was great and that she nailed it on the first take. If she isn't selected, it's still an honor to be one of the three finalists and I am sure whomever is selected will be a great spokesperson to help raise money for pediatric cancer through the Hyundai Hope on Wheels campaign.

Please continue to pray for Taylor's complete healing and that the DREAM TEAM will find a cure for pediatric sarcomas and cancer. If you would like to make a donation to this research project called the SUNSHINE PROJECT, please visit www.pcfusa.org

DREAM TEAM PARTICIPANTS:

Moffit Cancer Center, John Hopkins, Nemours Children's Clinic, University of Florida, Phoenix Children's Hospital, University of Colorado, City of Hope, Children's Healthcare of Atlanta, Miami Children's Hospital, MD Andersen, Southern Alberta Children's Cancer Program in Canada, All Children's Hospital, Memorial Sloan Kettering and Vanderbilt Children's Hospital.

Tuesday, February 7, 2006 1:00 PM CST

Taylor was admitted last Wednesday and Thursday for chemo as anticipated. I can't believe that's been almost a week ago. Taylor's platelets have to be 75,000 for a chemo admission. Her platelets were 67,000 so they told us that she would not qualify. However, since she was due for Avastin, she would go ahead a get that drug. So they went ahead and accessed her and ordered the drug from the pharmacy. One doctor came by and saw her counts and commented that she wasn't quite there and agreed with us not getting chemo. Then 10 minutes later another doctor came by and told me that she should get admitted to get chemo since 67,000 was "close" to 75,000. I agreed as this can change in a day. I actually wanted her to get admitted as Cary's parents were coming into town this past weekend and she hasn't seen them in almost a year. In addition, the girls cousins are coming in on Thursday and they are performing in a national cheerleading competition at Disney this weekend.

Cary and I were not going to go because the grandparents were taking the girls there, but we have to go because I have to give Taylor her GCSF injection everyday to boost stem cells. She won't let anyone else on the planet give her the shot. Disney is almost completely booked up and we barely got a room. I imagine there will be about 20,000 cheerleaders there. (oh boy) Plus Hillborough County is out of school on Friday which is Tampa and all the surrounding cities. (it's alot and I'm sure they are all going to Disney) The lines when Disney is booked up is not pretty. If any of you Oklahoma people have kids performing in the competition this weekend or anywhere else in the U.S., look for us as we will be there. The cousins go to Memorial High School in Tulsa, Oklahoma. (We are originally from Tulsa)

Back to the chemo thing; the doctor also said since she was technically due for Avastin and since they had already ordered it that she should get that too. I was very apprehensive about it and asked if they had ever given that drug with the chemo protocol Taylor is on and the answer was of course no, but in mice....etc. etc. Ok, Taylor's not a chipmunk last time I checked. Sorry, blowing off a little steam, but I ok'd it because she would have gotten it yesterday rather than last week and I want her to get it on time rather than just arbitrarily giving a drug just because were supposed to. Chemo and drugs that are to enhance chemo are supposed to be given on time to work effectively.

Taylor got the Avastin over a 90 minute infusion and she was ok. Then she got Gemcitabine for 30 minutes, and then she got Carboplatin for 30 minutes. Then she got Anzamet, (Antinausea med) and benadryl and then she got Paxlitaxol. As soon as that started going in she started screaming, mommy, mommy, my heart hurts, HELP ME! HELP ME. I pushed the panic button and I had three nurses in there immediately. I screamed for them to get the blood pressure cuff on her to check her heart rate. This can change moment to moment and they said it was ok at that moment, but who knows about the moment before. They gave her some Adavan which immediately took effect. She said she didn't feel sick, she just didn't feel right. Once they got her calmed down, they gave her Decadron and she had another reaction, but less severe. Finally, she stabilized and she was ok. She fell asleep a little later and slept until the next morning. The next day the head doctor was upset this was done and agreed that this would never happen again. (that was a given!) Anyway, I am not upset...NOW....as I know everyone's intention was to make sure Taylor is given her meds on time but we will never do that again within such a short time period.

We were discharged just in time to go to the meeting at the Children's Cancer Center where the kids put on an "American Idol" show. Guess who the judge was....Brad Richards. Where else can you hang out with Brad and he seems like one of the family rather than a famous hockey player. The center also donated a car to a family that didn't have one to get their child to treatment. Can you imagine relying on cabs and/or rides to do this? It would be very difficult as they have a heavy treatment schedule too. It was a night filled with tears of joy and sadness as another child we know lost their battle that day. We had just seen them a few days before at the mall so it was especially devastating. The doctors tell you over and over that your child may not survive, but you can't conceive this until it happens.

Yesterday in addtion to Taylor getting a "platelet special", Taylor, Cary, myself, my mom and Cary's parents attended a luncheon kicking off the film for the Pediatric Cancer Foundation Sunshine Project. Jordan didn't want to go because school is very important to her and if she misses school, it just stresses her out more. Anyway, this project is to find a cure for pediatric cancer, emphasizing a pediatric sarcoma cure. The film has some footage of an interview I did on camera in November at the initial kickoff along with pictures of the girls and our family as well as other families that have dealt with these diseases. I was given a badge yesterday that read, "Pediatric Cancer Foundation" "Sunshine Project" "Mary Kay Arrington". I was so proud to be part of such a wonderful organization. I haven't worked since Taylor got sick, well I work, I just don't get paid, but anyway I haven't worn a badge in a long time. I kept looking at it all day...hahaha. All the doctors were there yesterday as well. This was the second time they have seen Taylor. Sometimes just planting a seed is all that is needed to grow. Anyway they were all there to have a meeting to develop a clinical trial as well as see the film kickoff.

People always ask me if there is anything they can do to help us. I always respond by saying, pray for us. Today in addition to praying for us, I am asking that if you can donate anything to the Sunshine Project please visit their website at www.pcfusa.org. The project needs 5 million dollars to fund over the next three years. That sounds like alot of money, but it's not. If we can save one child, there is no amount of money that is too much for that purpose. Once you go to the site click on Sunshine Project, Media Release to see the media interview shown in November which is an interview with the doctors and myself which describes the project. There is also a place to click on to donate to the project.

Our hospital alone told us that they had 17 diagnoses in 17 days in January. It's like an epidemic here. We shouldn't have to guess if a drug is going to work or not or what the effects are going to be. There has not been a drug developed specifically for pediatric cancer in 10 years except for one. They are all developed for adults and then handed down to kids, by trial and error.

Check out the list of hospitals on board to conduct this research project. They are called the DREAM TEAM because they are the BEST OF THE BEST in pediatric cancer research.

Moffit Cancer Center, John Hopkins, Nemours Children's Clinic, University of Florida, Phoenix Children's Hospital, University of Colorado, City of Hope, Children's Healthcare of Atlanta, Miami Children's Hospital, MD Andersen, Southern Alberta Children's Cancer Program in Canada, All Children's Hospital, Memorial Sloan Kettering and Vanderbilt Children's Hospital.

Please continue to pray for Taylor's healing and that the DREAM TEAM will find a CURE for PEDIATRIC CANCER'S.

Tuesday, January 31, 2006 5:49 PM CST

Well I didn't think we could top last week's happenings, but we have exceeded last week's exciting events. Taylor's scans were stable and/or improved. The CT of the brain was clear and the CT of her pelvis area showed the area on her iliac bone and tissue to be stable. The lung nodules were stable and some had decreased in size. This of course is all really good news considering the aggressiveness of the disease. I always hold out hope though that Taylor might be the first Ewing's Sarcoma relapse patient to be cured. I asked if they can try and get a PET scan done next time since our insurance has changed because the hip area has remained the same for so long I want to know if there is active cancer cells there or not. Once you have a tumor, it's kind of like when you get a major cut. It heals but you always have a scar present.

I started changing my whole thought process a few months ago to focus on what if Taylor was the first person to be cured from this disease. What if her identical twin Jordan could help her be cured. What if they do find a drug combination to destroy Ewing's cells in her lifetime. I just started closing my eyes and pretending that Taylor was cured and everything was good. I started this in December as I guess I couldn't take all the stress anymore of worrying and making myself sick. This of course all came from God's grace I'm sure. Anyway this has made a world of difference in how I feel everyday and interact with the girls. They have never seen me so playful and silly. I think all of my adult friends are freaking out including Cary, but I think they like the change they see in me.

On the way home from the hospital on Friday, Cary called me to inform me that Hyundai had called us and that Taylor was selected as a finalist in the Hyundai Hope on Wheels Kid Spokesperson contest. Hyundai donates money to Pediatric Cancer research each year. They also have this car that goes all over the country visiting pediatric oncology hospitals and have the children put their handprints on the car where it permanently stays on the car. They drive this car from place to place carrying the kids handprints for hope. Last year we just happened to be at the hospital when they were there and they made a check presentation to Dr. Tebbi's research project that day. I will never forget Dr. Tebbi's speech and he looked directly into my eyes when he said, pediatric cancer is the highest cause of fatalities in children and when we loose one child to cancer, we have lost too many.

We filled out the entry form two weeks ago and Taylor and I wrote it while she was getting Avastin in the clinic. It had to be 250 words or less. When I counted the words for the first time, it was exactly 250 words. I typed it up and we emailed it along with her picture and they called us on Friday to let us know she was a finalist. They asked Cary if she had ever been interviewed by the media and he told them about her commercials, billboards, TV interviews, short films, newspaper articles, etc. etc. All have come about through her illness to find cures for pediatric cancer. Then they asked if she would have a problem traveling to NY and/or LA to speak. Hello....I think we can manage that. If she is selected I think you only have to travel twice in a year so it's a minimal commitment. The Hyundai Board of Directors will make a decision in the next few weeks. God has definitely blessed us over the past week! It is all in the name of finding a cure for this disease and honoring God for everything he has done for us.

Well we are scheduled to be admitted tomorrow for chemo. They are keeping her on the same protocol so we should come home late Thursday. That is if she qualifies as her platelets were still pretty low last week. However, she played kickball at school last week for the first time in 2 and 1/2 years and she played basketball on Sunday with some neighborhood kids. I feel God is working great miracles through Taylor and I feel all the people praying for Taylor and our family have brought great things to us this past week....more than usual!

Pray for Taylor's CONTINUED healing and that chemo will go well tomorrow and Thursday.

The photo is what I sent to Hyundai with the 250 words essay. How could she not win???!!

Thursday, January 26, 2006 10:04 PM CST

Ok, it's way past my bedtime but I just have to share some things. Taylor woke up Wednesday morning and requested to get her counts checked because she said she felt really tired and out of breath. When she requests her counts to be checked I take it seriously because she only asks this when she really thinks she needs to. So we went to the hospital on Wednesday to find out that she didn't need a transfusion or anything but her platelets were only 41,000. This means that all the worrying and distress I was feeling about her not getting chemo today because of the hospital messing up her scan schedule was irrelavant because she couldn't have gotten chemo today anyway as her platelets have to be a minimum of 75,000. Needless to say, again God is in control and I think it was his way of letting me know it's always in his control, we just have to acknowledge that so we can let go.

Ok, the next issue is that we went out to dinner 3 weeks ago and I lost my glasses. Yes, I have glasses and just hate them but I can't read without them. This is very important when you are doing homework, but more importantly trying to read a menu when eating out! I looked everywhere for them and called the restaurant and searched the house, car and yard. I had to resort to my backup Walmart pair and after a week and a half I was going to go to the optometrist to get a new pair even though it was an expense we didn't need right now. Well that morning Jordan came running into the house to tell me that she found my glasses outside in the mulch. They were unscratched or damaged even though they had been out there for over a week in the yard. I had just said a prayer and low and behold it was answered instantaneously.

I guess when we came home that night I walked the dogs and they must have fallen out of my pocket as I only put them on when I have to read and I had to read the menu and then I was done with them.

Taylor has a ring that my mom bought her last year that is just beautiful to her. It is sterling silver, but it wouldn't matter if it was tin foil to her as she loves that ring. She put it in her little trinket holder last night and this morning she couldn't find it and was crying and very upset. Our cat knocks over everything and we figured she must have knocked over the trinket holder as it was on it's side and her ring must have fallen down the sink as it was in the trinket holder next to the sink. I looked down the sink and told Taylor I was sorry but there was nothing I could do. Cary was gone to work already and I had to be at class in 45 minutes as well as the girls had to get to school. (I couldn't take apart the pipe but I would have tried). I went outside to the car, but came back in to kiss Taylor again before I left because she was so upset. I said a brief little prayer and when I came back in I immediately saw the ring on her floor next to the bathroom in a corner. She was so happy and I thanked God.

Ok,....here is the biggest part....tonight we were given tickets to go to the hockey game courtesy of St. Joseph's hospital. They called me 3 weeks ago and offered the tickets for tonights game. I think they have only given us tickets one other time in 2-1/2 years. Taylor was supposed to be admitted today, but that was cancelled due to her scans being postponed. I didn't know if we would be able to go or not but it worked out that we could. Even though I was tired and definately thought about not going, we hopped in the car tonight and drove to the game which is like driving to the hospital...about 28 miles. I have to take Taylor to the hospital again tomorrow and Saturday so I wasn't too excited about driving that drive. Cary met us there as he works in St. Pete so it's on his way home. So we go to the game and Cary always buys raffle tickets for lightening jerseys and such. They had another drawing that he forced us all to participate in which was for a 4 day cruise. If you win, you also get entered into a contest for a 50,000 home makeover. Well, my gosh we won!!!!! There were approximately 18,000 people there tonight and we won!!! Cary took Taylor to a game two weeks ago and they won an autographed Ruslan Fedotenko jersey. We have donated so much money to the raffle causes that I'm sure we more than paid for it, but again they won out of 18,000 -20,000 people.

Tonight's picture is of all of us with our cruise pamphlet and 50,000 home makeover entry. We get tickets to go to an April 9th game and that's when they will pick the three finalists. If you are one of the three finalists you go down to the ice and get to shoot a puck into the goal. If you hit the target you win the 50,000 makeover! Wellll we have an autographed Vinney Lecavalier stick...(he's my boyfriend, only he doesn't know it....I'm old enough to be his mother, but don't tell him or Cary..)hahaha We also have several pucks from Brad Richards and Marty St. Louis so we are going to start practicing hitting pucks off the deck into the pool right away! I hope some of their magic rubbed off onto the stick and pucks...although they have been making tons of shots lately without getting the puck into the net...but at least they are playing good again. They won last night in OT! Guess who made the the winning shot...Ruslan!

I am so overwhelmed with all of these miracles and things God has done for us. I feel that all the mistakes that were and have been made by the hospital were definately made up for tonight. Although these mistakes were all probably orchestrated by God. If they hadn't given us those tickets, we wouldn't have been there tonight. If Taylor's scans weren't postponed and her platelets had been good, we would have been in the hospital getting chemo tonight.

BELIEVE: We may not always know the right thing to do or the right path to take, but FAITH will show us the way. Remember that we are never alone, as God is always there to answer prayers and send us the help we need. Sometimes it is "WE" who do not recognize that help. Believe, trust, and pray...and know that all your needs will be taken care of.

P.S. I moved the photo of Taylor and her friend Austin from the Atlanta Falcons. Click on photos at the bottom to view for those of you that didn't get to see the picture since I only had it up a few days.

Please continue to pray for Taylor's healing and scans on Saturday. God Bless, Mary Kay

Tuesday, January 24, 2006 4:14 PM CST

Just a quick entry advising everyone that they cancelled Taylor's scans that she was supposed to have yesterday. The hospital called me at 5:15 p.m. on Friday to advise me that my insurance had not approved the scans. This is very unusual as we have never had a problem getting authorization except for a PET scan. They told me that I could sign a waiver and go ahead with the scan yesterday...which means you have to pay for it because it's not authorized which is about $5000 for the scan. We actually have two policies for a short time as this is the last month we can use my policy through COBRA and now we are on Cary's insurance. So we have two policies this month and now we can't get coverage....don't figure. Anyway, they called me yesterday to tell me that Oops they did have authorization because my new policy does not require it which is primary...but my secondary does require authorization which they in fact had.

I wasn't too happy because the scans were strategically scheduled yesterday because Taylor was going to be admitted for chemo on Thursday if they were stable or improved and continue getting the chemo protocol she is on. Well they have rescheduled them for Saturday morning...I didn't even know that was possible on an outpatient basis. I think because they messed up they are trying to get her in. She has to be NOP (can't eat) so it's not like they can't call us at 3:00 and work us in. I was ok with all this at first but I started freaking out last night because now we won't know the results until next week and if we have to switch protocols the doctors will have to research and come up with a new treatment plan and we have to ok it....ect. ect. This all takes time. So needless to say....I took a step back and am leaving everything in God's hands as I can't control cancer cells no matter how hard I try. Then I started blaming myself for not going ahead with the appointment despite authorization....ok I'm not gonna do that.

The funny thing is that when I was at the Children's Cancer Center meeting on Thursday night I told everyone that I just don't want to do scans anymore because I'm just fine doing what were doing and I don't want to know what the results are. (even though I know this is not an option). It's just that scans are a harsh reality and I always have knots in my stomach for days in anticipation and then waiting for that phone call is just torture. Being told over and over again that your child may not survive takes a toll on you and you live everyday with that on your mind. I had to laugh on Friday though because I say things like that and then God puts me to the test. I'm like ok God I was just kidding...I get it, ok. The bottom line is that God is in control of everything so I'll give it up already.

Well I guess that wasn't exactly a quick entry now was it. I guess I needed to get all of this out....I feel better now and can now continue to do my 300,000 homework problems....hahaha

Please pray for Taylor's healing and that the scans will be stable or improved.

I finally got the picture of Taylor with her buddy Austin with the Atlanta Falcons downloaded. It was taken Christmas Eve at the Bucs/Falcons game. Taylor met him last February on the ski trip that the Children's Cancer Center and NFL players sponsor. They had not seen each other since last year. Talk about a great Christmas story! Taylor has on her bucs jersey and Austin has on his Falcon's uniform. I just love that picture of them together. It was the only time I didn't mind a football game going into overtime...it was such a great game and a beautiful, perfect day.

Friday, January 20, 2006 6:27 AM CST

Another week gone by...where does the time go. Taylor received Avastin on Monday and she tolerated it well. She is doing well other than being tired so she has pretty much just going to school half days. I was talking last night at the Cancer meeting support group we attend and saying how well Taylor was doing and that she has stopped limping which is a good thing because the main tumor is on her hip bone. Well as Murphy's Law would have it she woke up in the middle of the night with bad leg pain. It seemed to be in the quadracep muscle though so I hope it is not disease related. That's the first thing that goes through your mind. Of course it could be a side affect from the Avastin or 28 months of chemotherapy.

I got word that the Sunshine Project which is a project that is funding research for a pediatric sarcoma cure raised $150,000 the day of the kickoff which is pretty good considering there were only about 25-30 people, (mainly doctors) in the room. I'm so glad that Taylor's Story CD helped make an impact on getting this funding started. The project needs 5 million to function, but at least it's a start. I really need to win that 50 million dollar lottery so I can give them the money as well as the Children's Cancer Center and Dr. Tebbi's research project as well as my church. Of course, I would take care of my family too...and friends. Do you ever think about winning the lottery....I'm sure we all have.

Back to reality..This weekend will be busy as Jordan is twirling in the Gaspirilla Parade which is like Mardigras only it's in Tampa. It's a big thing here. Taylor was given the option to ride with a krew, but she didn't want to because when there are alot of kids they tend to throw the beads and hit the back of your head rather than getting them to the people on the street. I rode with a krew two years ago and you have to throw those beads really far to reach the crowds. I was hit in the head several times full force with flying beads so I understand what she means. It's suppose to be 80 degress tomorrow so I'll have to put lots of sunsreen on Jordan. I'll take that over two years ago when Tampa had it's coldest day of the year with 40 degree temperatures, wind and rain and we had to stand on a float without umbrellas for two hours. They told us we couldn't bring them, but everyone else did and wouldn't share. We didn't know anyone on the krew and no one knew our situation with Taylor. We were all covered up in ponchos so they couldn't see that Taylor was a cancer patient. The float had a covered area on it, but I think there must have been 25 people in a 2 X 4 space. We also parked at the beginning of the parade because we were not familiar with the area and had to walk back two miles in the wind and freezing rain. We couldn't find anyone to help us get a ride back. I was crying because Taylor was crying...ect. ect. it was not pretty. So if any of you mom's out there have kids in the parade, drop them off and go park at the end of the parade. Anyway, let's just say it was a learning experience.

Taylor has scans on Monday so please be praying for healing and that the tumor is stable or shrinking on her hip. (she is not limping anymore) Praise God. Pray that the nodules in the lungs are shrinking and that there is no disease in her head since they are adding a CT of her head this time. I keep finding that prayer card with the scripture FAITH IS BEING SURE OF WHAT YOU HOPE FOR AND CERTAIN OF WHAT YOU DO NOT SEE. HEBREWS 11:1.

I guess I dropped it because I found it laying under Taylor's bed the other day. I could see it sticking out. Then it appeared in my book when I was doing homework the other day. I'm sure I put it there and forgot about it, but it's just that it keeps popping out at me everywhere. So, I keep reading that scripture and holding onto those words to keep going everyday no matter what the circumstances are.

I haven't had time to download any new pictures this week. Since I got so many comments on how cute the picture was of Taylor and the kennel here, I'll just leave that one up another week or so!

Friday, January 13, 2006 9:52 AM CST

Taylor has had a pretty good week over the past week. Things have been really busy with school starting again for the girls and me. I heard on the news that a 71 year old woman from Texas just graduated from college. I thought to myself, that's no big deal because thats how old I'll be by the time I finish!

Taylor did not go to school last week because her counts we so low but she has gone pretty much every day this week except for Monday because we were at the hospital all day. Taylor received two huge bags of platelets on Monday and her platelets have maintained for over 72 hours so she didn't need anything yesterday when we went. Taylor is supposed to get Avastin again next Tuesday. They said they got authorization to pay for the drug....yea! At $3,000 an infusion we are thrilled. We are in the process of switching insurance plans because of the new year, so we will have to deal with this all over again, but hopefully it will all work out.

Taylor has been tired, but other than that she has been in good spirits. She is supposed to have a CT on the 23rd and they have added a CT of her head in addition to the chest, abdomen and pelvis because she has been getting alot of headaches lately. Please pray for Taylor's healing and that the scans will be improved or stable. Please pray that the disease has not spread to the head or anywhere else.

The picture this week is of Taylor and all the animals. Taylor got a new quilt for Christmas and I'm so glad all the animals could enjoy it. Tinkerbell is the cat...we lived in Orlando at the time she was named. (Disney capital of the world). Molly is the Golden Retriever who weighs 75 lbs. and Roxy, who is getting much better by the way...she is 6 months old now. Taylor has about 6 inches of room on her bed left. Tinkerbell hates Roxy, so it was so funny that they were all laying together.

Monday, January 2, 2006 4:18 PM CST

Happy New Year!

Taylor had a pretty good week this past week. We did go in for chemo last Tuesday and Wednesday and things went pretty smoothly. We will go in tomorrow for blood count checks and Taylor will get an Avastin infusion tomorrow. The doctors are going to give her another infusion of Avastin to see if the chemo and Avastin working together are effective in treating all the nodules in her lungs. I got the good/bad news that they will rescan Taylor again in about two weeks to evaluate. So here we go again with more anxiety and worrying. If the chemo is not working with the Avastin they are going to change her chemo AGAIN. I have no idea what it would be...in or outpatient or what drugs. Hopefully they can give me an idea tomorrow as the doctor who writes her treatment plan was on vacation last week.

When Taylor had her CT scan a few weeks ago, there was a lady playing the harp and singing at the hospital in front of the chapel. It was so beautiful to hear as she sang heavenly and how many opportunities do you have to hear someone play a harp. Anyway, I just thought it was significant as she was playing during the time frame Taylor had scans and that was what we heard when she had completed her scans. When we got to the car, Jordan picked up a card off the floor and said, here mom this is your's. It was a scripture on a notecard I had written back in September and I guess it had fallen in between the seats and it showed itself at that moment. It was Hebrews 11:1:

Now faith is being sure of what we hope for and certain of what we do not see.

I thought that was another way God talks to me at just the right moments. This past weekend I was at a store and in one section of the store they had some frames (Bed, Bath and Beyond). There was Hebrews 11:1 again in a frame and the scripture basically jumped out at me. So I figured it was a sign for me to buy that frame with the scripture in it so I did. That way I can hang it in the house and see it everyday. If you look for God he is always there to help us along our journeys in life, good and bad. So I will continue to read this scripture everyday and place all our faith, hope and fear with God. Please continue to pray for Taylor's healing and guidance in her treatment plan.

Ok, I still have my sense of humor....it was almost 80 degress today and yesterday so I just thought I would post the picture of Taylor at the beach a few weeks ago with snowman background since it is winter everywhere else....smile

Monday, December 26, 2005 8:06 PM CST

Hope everyone had a wonderful Christmas. I know we did! We have fully enjoyed the past couple of weeks of normalcy. Unfortunately, all of that is coming to an end tomorrow. We are going in tomorrow for chemo which will require an admission. We will be there all day Tuesday and Wednesday and hopefully come home late Wednesday afternoon if all goes well. I just praise God that we have had a wonderful Thanksgiving and Christmas without being in the hospital as we know many families who were.

We got Taylor's CT scan results last week but I just didn't feel like dwelling on it or dealing with it last week. Basically the radiation was effective on the three lesions in her lungs. Two of the three are almost gone and the largest one which was next to her heart has shrunk from 3 cm to 2.2 cm. I guess I expected it to shrink more, but I'm not complaining. Unfortunately, Taylor has a total of about 9 to 12 nodules in her lungs. Two of them grew slightly which is not good, but not bad either since she has not had chemo since October 18th. The largest tumor on her hip has remained stable which we are very thankful for. I'm not sure if they will keep her on the Avastin or not. I guess we'll find out tomorrow if they intend on keeping her on that drug. It's a big dilemma as the drug is $3,000 an infusion and she has been getting it every two weeks. There is a big battle with insurance as it is not proven to be effective for Ewing's but it has not proved to be ineffective either, so I don't know if we will be able to keep her on it or not. If it works, we will do everything we can but I don't know if the doctors consider it effective or not. The drug is suppose to work in conjunction with chemo and she has not had chemo with it, so I don't know what their opinions will be.

We had an absolutely fabulous Christmas. We had a very great day on Saturday as we were able to go to the Bucs game and what a game it was! I think it was the only time I didn't mind a football game going into overtime and we won in the last 15 seconds of overtime. It was an absolutely beautiful day filled with wonderful Christmas Eve memories.

Taylor had met one of the Atlanta Falcons players on the ski trip last February that the Children's Cancer Center sponsors each year. She had not seen him since February and they have remained good friends all this time. Fortunately, we were able to meet him at the Falcon's bus after the game so she could give him a big hug. I wanted Tampa to win the game, but I wanted the Falcons to win as well because of her good friend on the team. I guess someone has to loose, but both teams played really well. It is always wonderful to see athletes that really care about the kids and she just loves him. I was so happy they could see each other again. They are all supposed to go on the reunion trip in July of 2006, but it was great to see them get to give each other a great big hug on Christmas Eve. Talk about an awesome Christmas story! I have a great picture of Taylor with him in uniform, but it's on her new camera she got for Christmas and I haven't downloaded the software yet. She looks like a tiny little thing next to him.

Please pray for Taylor's healing and that chemo will go smooth tomorrow and Wednesday. Fortunately, Jordan can go with us for this admission since school is out so that will help. Happy New Year to everyone!

Sunday, December 18, 2005 3:02 PM CST

Taylor has had a very good week. Wow that sounds great to say. Taylor received her Avastin on Wednesday and it really didn't seem to make her feel as tired this time. We have been busy finishing Christmas shopping and living some wonderful "normal" days of life.

Last week I was struggling with fear and faith; especially last Monday. Sometimes we think "where is God in all of this" but he always reveals himself to me even when I'm not looking for him. On Tuesday I was looking for a bank statement all over the house. I was going through every drawer, desk, file, ect, ect. I came across a book that I had picked up over a year ago at church at a women's book swap table. I had never started reading the book since I picked it up from church. The title of the book was called "Living Fearlessly". I decided to take the book with me to the hospital on Wednesday as we would be there for about 3 hours. Since I had nothing to study....yea....I took a book.

I am a skim reader so I started looking for something that would inspire me. I fumbled across a chapter in the middle of the book and I nearly fell over as I was reading the pages. This chapter was about the author describing how her heart was breaking at Christmas for this family as their 10 year old son "TAYLOR" had been diagnosed with a form of cancer called osteosarcoma and he had relapsed twice with nodules in his lungs. The chapter was titled "Postcards from the Edge" so I had no idea it was going to be about this situation. Our Taylor has Ewing's Sarcoma which is very similar to Osteosarcoma and she is 11 years old with nodules in her lungs. I began to tear up at the hospital as I read a prayer in the book that the father of the TAYLOR in the book had written. I am retyping this prayer word for word, only changing it from "him" to "her".

O God, Taylor belongs to you, not to us. Not even to herself. We know you love her even more than we do. Thank you for weeping with us, with her, in the face of this unspeakable horror. Because you've said so, we also acknowledge that in your all-powerful sovereignty you are a loving God who answers prayer. But you are God, not Aladdin. But above all: In whatever way you deem best and with the help of your Spirit, glorify yourself in Taylor, in her sisters, in us. We are terrified by the implicit risk in this request. Help us, please. O'Abba, help us, Broken,undone, we pray these things in Jesus' name. So be it.

Could God have been any clearer in speaking to me?? It also discussed how we as parents join all kinds of clubs we don't want to join....look at last weeks journal where I spoke about joining the club of parents who have lost children that I didn't want to join. I was totally renewed in faith as I see that God directs everything and if I hadn't lost that bank statement and looking everywhere for it, I would have never found that book or read those pages.

Another way God revealed himself this past week was that we were given tickets to go see the broadway production of Annie. We were given the tickets by the Pediatric Cancer Foundation as a thank you for me speaking at the Sunshine Project, which is a project to find a cure for Pediatric Sarcomas. I knew Annie was coming, but it would have been something that I would have intended to get tickets to, but most likely would not have bought. The tickets are not cheap and the Performance Center is in downtown Tampa and I drive that way so much to the hospital, I avoid driving there at all costs if I don't have to. Anyway, the girls have every version of Annie and they use to watch it over and over again when they were 7, 8 and 9. I never sat down to watch the whole thing as I was always getting bits and pieces of it as it is hard for me to sit still. Ok, I never caught this in the movie, but Annie was born on October 28th. The girls were born on October 28th and the character Annie is 11 yrs. old. Taylor is 11 years old. Annie is a red head...Taylor was a red head prior to losing her hair. Annie is a spunky, witty little girl who faces alot of adversity but remains very happy and positive. Boy, that is my Taylor with a "T"!

I felt all the songs were directly speaking to me. You know them...The Sun Will Come out tomorrow, bet your bottom dollar that tomorrow, come what may...Tomorrow, Tomorrow, I love ya tomorrow, your only a day away. Many of the other songs in Annie are so great. Teddie Roosevelt is one of the characters in the story as well. He of course says his famous statement, "The Only Thing to Fear, is Fear itself". I saw that phrase in a whole new light. I was so moved after the show and just felt God's love, as the opportunity to get the tickets to see the show came from a casual conversation that lead to me speaking and sharing a video about Taylor at the Sunshine Project. The video came from an idea to thank my church for all their love and support over a year ago. Are all these things accidents...I think not. When I got home I had to take the dogs outside and it was windy and it had been raining. I looked up at the sky and just as I looked up, the clouds parted and there was a full moon and it reflected the most beautiful cross from the light from the moon. I just stared in awe and then the clouds covered the moon again and the reflection was gone. I guess what I learned this week is that God is walking this walk with us and he couldn't have made his love for Taylor and us any clearer.

I just had to share all these wonderful things God revealed in the midst of Taylor having scans on Tuesday, as I know that no matter what, God is bigger than cancer or scans or any of the things we worry about in this life.
Merry Christmas to everyone and may you find the Christ in Christmas, Mary Kay

Tuesday, December 13, 2005 6:57 PM CST

Taylor finished radiation last Tuesday and we celebrated by going out to dinner. Taylor was so happy because she would be able to take a shower without having to cover her magic marker "road map" up. They are not going to start Taylor back on chemo until the day after Christmas. Since Taylor had radiation, they are afraid to start chemo for a few weeks as the radiation intensifies the chemo toxicity. Two years ago Taylor became septic because they didn't wait long enough to do chemo after radiation. So basically it will be 2 and 1/2 months since Taylor has had chemo by the time we get it. That is very scary as her disease is so aggressive, but I have to keep telling myself I have no control and we are doing everything we can for her.

Since Taylor finished radiation and I finished another semester, many fearful and sad feelings have surfaced that I haven't allowed myself to feel in a long time. Ya know what I mean.....I have been so busy that I think it allowed me to just focus on getting from one place to the next and one day to the next. I was feeling very lonely yesterday and a friend invited me to a "game night" with some ladies from church and it felt so good to be out laughing and having fun with other ladies and not at school!!! I was having a pity party for myself earlier in the day and I think God was listening. Hi, my name is Mary Kay, and I'm a worryaholic....smile

Although I am still really busy with Christmas shopping, it is hard sometimes as so many children we know have lost their battle with cancer this year and I just ache for those families and it's a club I don't want to join. Many times I put myself in their shoes and I don't know how a parent can handle living without their child. I have to say alot of prayers and focus on each precious moment with the girls. I think since Taylor has a CT scan next week, I am really struggling with finding out anymore bad news. I know that faith and fear cannot exist in the same place, but somehow I seem to go from one mode to the other several times a day. I keep reminding myself that fear is a feeling and FAITH is not. I just wish I could stay in the FAITH mode all the time.

I expressed my concern to the doctors since we are doing scans next week, yet Taylor has not had chemo for 2-1/2 months so I'm not quite sure what we will hear. They are evaluating whether or not the radiation knocked out the lesions in the lungs and whether the Avastin is keeping the tumor on her hip at bay. Avastin is not a chemo drug, but a drug the cuts off blood supply to blood vessels so they will not constrict and thus hopefully the tumor on her hip is not enlarging. Taylor will get this drug again tomorrow, which will be her third time to receive this drug. One day she seems like she is not limping and I feel good about it and then the next day she will limp and I automatically think, it's not working. I hate this internal struggle, but I think it's just part of battling this disease. Taylor has a little peach fuzz on her head and her eyelashes are growing back. I get sad when I think she will loose it again when we start chemo in a few weeks.

Mine and Cary's wedding anniversary is tomorrow....14 years people! Note to others....never get married, have a birthday and Christmas all in the same month. You have to remind hubby that they are three separate occasions, not rolled into package...just kidding. I feel fortunate that we have hung in there. Apparently the divorce rate for families with children with cancer is 80 percent due to all the stress involved. I wouldn't know how to handle all this alone. We have to work as a team as he brings home the bacon and I fry it up....ok, that's a little corney.... Happy Anniversary Cary!

We ran off to Disney this past weekend to see the Osborn Family Light Display at MGM. Click on the Photo Link at the bottom of the page as I uploaded a sneak peak at this spectacular display and a few Disney photos of the girls. If you have never seen it, it is absolutely amazing. We accidentally, but luckily arrived within five minutes of the light display turning on which was very exciting. It is on several streets at MGM. It is over 5 million lights and over 12 miles of extension cords to light the display. We had a great time as we hit all the parks except Animal Kingdom. We were trying to beat the Christmas rush, but I think everyone in Florida had the same idea as it was pretty crowded. Disney at Christmas is so beautiful. Cary had taken the girls to Epcot in September and Taylor had seen some really pretty Japanese robes...I know they have a formal name, but I am sure I'll spell it wrong. Well dad wouldn't buy her one because they were not cheap...nothing at Disney is. Sooooo, we had to make a point to go through Japan at Epcot and Taylor grabbed Grammy and said, Come on Grammy, let's go look at the robes. That is code for, I'm gonna get Grammy to buy me what I want. Of course she was successful. Both the girls have played in those robes and have had a great time in them.

Please continue to pray for Taylor's healing and that her scans will be stable or improved on the 20th. Pray for peace and comfort for our family so we can focus on Christmas and enjoying the wonderful, chemo free time we will have this Christmas.

"My grace is sufficient for you, for My power is made perfect in weakness. I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, I am strong." 2 Cor. 12:9-10

Monday, December 5, 2005 2:15 PM CST

Hey Everyone. Sorry I have not updated, but things have been so busy that I haven't had a moment to breathe. I even forgot it was my birthday last week. Well, maybe that's due to old age. Taylor is doing really well and radiation has not been bad at all. We just got home from radiation today and tomorrow is our last day of radiation, at least for now anyway. We meet with the radiation oncologist tomorrow for Taylor's last day so I'm not sure if I'll know anything differently or not. I only have a few minutes as I have to pick up Jordan in a few minutes from her book club and take her to twirling and then off to school for me. I am just a zombie driving down the road so look out for me ok..I'm the one with her eyes closed..

The doctors will want to put Taylor back on her chemo plan again probably starting next week. Yuck! Then they told me Friday that they will rescan Taylor on the 20th. I think they are trying to tear my heart in half as the last scans were the week of the girl's birthday and now they are scheduling a scan the week of Christmas. I feel I just get a little relief and then it's off to the next obstacle. We have alot to be thankful for so we will focus on that.

We went to the Children's Cancer Center annual Christmas party last Thursday night. After radiation last Thursday, we stayed over by the hospital as it is so far away from our house and I didn't want to drive all the way home and turn around and go back to the party which is by the hospital as well. The girls and I went to the mall for a little while. While we were there, I saw a Michael Clayton Buccaneer jersey in one of the stores. The weekend of Thanksgiving we were able to go to the Bucs game and Jordan was crying because she didn't have a current player's jersey. She only had a Warren Sapp jersey and since he doesn't play for the team anymore....it's no good I was informed. Jordan is not a sports fan at all but Taylor is. Dad had gotten a Michael Clayton Jersey for Taylor autographed because Taylor did a commercial with him in September but he didn't get Jordan one because he didn't think that she would wear it and typically she has no interest at all in sports. Jordan was crying before the game because she didn't have a current player's jersey and I told her we would get her a jersey at the game, but when we got to the game she didn't want one. When we were at the mall I was going to get her the jersey and have dad give it to her for Christmas, but since they were with me I didn't get it. We went to the Christmas party and of course Michael Clayton shows up for autographs. I could have just kicked myself for not getting that jersey.

The mall is very close to the hotel where the party was, but traffic is horrible. I literally ran to the car, ran to the mall, and ran through the mall to buy a Michael Clayton jersey. I even broke one of my golden rules and parked in handicap parking as we have a placard for Taylor, which I only use when she is with me. Since Florida is the retirement capital of the world, you can never find an open handicap space because almost all the retirees have a handicap placard in the state of Florida. I am sure everyone was giving me dirty looks as I RAN from the handicap space into the mall...but this was an emergency! I ran back to the party and Michael was literally getting up to leave as he had to go to another engagement. His press person was telling everyone, no more autographs. I must have had a very desperate look on my face because I put the shirt in front of him and asked him to please sign it and he did. I was so proud of myself and I took the jersey to Jordan and showed it to her and she said. Oh thanks, mom. She had no interest and no clue how hard I worked to get that jersey. I guess it doesn't matter though, because the next time we go to a game she'll have that jersey. The things we do for our kids....smile.

Please continue to pray for Taylor's healing and that her scans will be improved. Thank you for all your wonderful words of support. Although I don't respond typically due to time, we really appreciate them. God Bless.

Saturday, November 26, 2005 4:20 PM CST

Hope everyone had a happy Thanksgiving. Just thought I would do a quick update as the next week is going to be pretty busy. On Monday when Taylor woke up her cough had gotten much better. I was very thankful, but that meant we would go ahead with the radiation on Monday. Taylor did great on Monday with radiation. She didn't cry and even the technicians were amazed. We were there a very long time as the first time is the longest because they have to take films to make sure their margins are right. After about an hour an a half we finally finished and were able to leave. Tuesday went pretty well too with radiation but Wednesday was quite challenging. They had to take films again on Wednesday as the doctors check the xrays everyday to make sure they don't need to make changes. Well of course they had to make changes. Taylor was very uptight and after an hour of trying to retake films, they let her take a break so they could treat the next patient. She was very upset as the longer she has the lay there, the harder it is on her. They kept telling her that she was breathing too hard and I could hear her crying and saying "just take the picture". Taylor is still struggling with a cold and cough so it is hard for her to breathe. The girls had been asked to do an interview after radiation with Fox 13 news and she was so upset because she wanted to do the interview. I told her not to worry about it and that we would get there when we could and not to stress about it. She was crying and telling me that she was sorry and that she was trying her best. My heart almost broke to see the look on her face. I told her that we would take a walk outside and just relax and take her time. After about 30 minutes she calmed down and she went back in and we got the films and were able to get her treated again. Taylor's little body looks like a road map with all the permanent marker they put all over her so that they radiate accurately. It is a harsh reminder of this horrible disease.

After we finished, we went down to street to Survivor Park which is a park dedicated to cancer survivors. We always drive by there, but have never stopped in. It was a beautiful park and butterflies were all around the flowers in the park. The girls did an interview which is supposed to air Tuesday night at 6:45 on Fox 13. I didn't expect to be interviewed, but they interviewed me as well. I was glad I put make up on. hahaha That was a fluke, as many of the days I go to the hospital, I usually look like I'm dressed to clean out the garage or something. You never know what they are going to show though, so who knows how the piece will turn out.

Taylor has felt pretty good the past few days. She started to feel very tired on Wednesday after radiation, but after having a break for few days she seems to feel better. Unfortunately, we have to do radiation everyday next week in addition to getting an infusion on Wednesday of the experimental drug. Taylor has been limping due to the tumor on her hip which terrifies me. It was really bad on Wednesday so of course I'm thinking well we are getting ahead by radiating the lesions in the lungs but the one on the hip is growing because we are not doing chemo. Today however, she doesn't seem to be limping. I nearly drive myself crazy with worry, but today she is outside right now jumping on the trampoline so I guess I'll be thankful for today!.

We went to the beach this morning and had pancakes on the beach! Even though I have lived in Florida almost 6 years, it still blows my mind to go to the beach when it is almost December. Today they were playing "Little Drummer Boy" at the Cafe on The Beach. Many of the kids were in the water which is so cold right now. You can always tell who the tourists are since they always get in the water in December and January. I love going to this cafe because it is literally on the beach and you can eat and watch everyone playing on the beach and it is just beautiful. We also went to a pier nearby and saw dolphins swimming and playing all around the pier which is always wonderful to see. I could just sit there all day and soak it all in. It is so far from the hospital world.

Please continue praying for Taylor's complete healing and pray that the radiation will go smoothly this week. Thank you so much for all your prayers and support. It means so much to us.

Saturday, November 19, 2005 2:59 PM CST

We went to the hospital again on Wednesday so the radiology department could scan Taylor's lungs. I remembered how traumatic it was for Taylor when she went through radiation two years ago on her spine. Well, lets just say nothing much has changed. They had to do markings on her her sides and chest for radiation which was awful. Taylor was hysterically crying and SCREAMING so it took a long time to get her calmed down enough to get the markings done. It was just that she felt violated and out of control of her own body. I was torn up inside to have to put her through this again. The radiology oncologist got back with us within a few hours and we discussed our options. She said she talked to several other radiology oncologists and does not want to radiate the whole lung area. We are going to radiate the three spots in her lungs. Two of them had shrunk on her last scans, but since she is going through the trauma of radiation we might as well hit all three at one time. The radiation does not hurt it is just the procedure itself that terrifies her.

Taylor also received the new drug therapy on Wednesday as well. It is totally experimental as there is no proof in using it for Ewing's Sarcoma cancer cells. So we are basically taking a stab in the dark. There is also no data on how it works in pediatrics either. The idea is to cut off blood supply to the blood vessels so that the tumor on her hip does not grow. They will keep her on this drug until she is done with radiation and hold chemo during this time. The chemo and radiation would be too much for her body to handle.

Taylor's counts have continued to drop which really concerns me. She had started to recover 2 weeks ago, but her white count and hemoglobin have continually dropped each time we go in. She woke up Thursday coughing and it has gotten progressively worse in the past few days. I have given her everything to try to control her coughing but nothing is working. Cough medicine, breathing treatments, inhalers, cough drops, ect. So that tells me that her white count is probably continuing to drop. I am going to have the doctor look at her on Monday to evaluate her as she has that terrible cough that she had two years ago that really got her lungs in trouble. I don't know if they will radiate on Monday if she is still struggling with this cough.

We went to the hockey game on Thursday night as it was "Yerrid Fights Cancer Night". After the game several families went down to the locker room area. Not in the locker room.....darn. hahaha Ok, anyway we were in this room and the whole team came in to sign autographs and take pictures. All the families really enjoyed seeing all the players. The Lightening won, which is really good as things have not been going so good on the ice this year. Apparently they have not lost a game 6 years in a row when they had the "Fight Cancer Night". Vinney Lacalier took a picture with the girls. All the players are really cute...but Vinney is the cuttest. (I don't get out much, ok).

On Friday I had the priviledge to attend a kickoff breakfast for the Sunshine Project. The Sunshine Project is a research project to find a cure for pediatric Sarcomas. Let me tell you it is a cancer mom's dream to have a captive audience of 30 brilliant research doctors from all over the country listening to you. I was going to lock the door and hold them hostage, but I don't think that would have gone over very well. I shared that Taylor had been on 18 different drugs since starting treatment 2 plus years ago and we need a cure for this disease in an interview with the media as well. We have all this technology and all these sophisticated doctors, but we still can't find an effective treatment for this disease. Hopefully though all these doctors can come together to find a cure for these diseases. I was very excited to see all the presentations, which was alot of medical information. At the end of the research presentations from all the doctors they showed the video "Taylor's Story" which was made last November showing some of the struggles we have gone through. I think it put a human side to the research project. I was really impressed with the gathering of doctors there.

Please pray for Taylor as these next couple of weeks will be challenging. We will have to do radiation for 10 days so it will be a rough couple of weeks. Thank you for all your love and support.

Tuesday, November 15, 2005 2:36 PM CST

Well we really don't know a whole lot more than we knew last week regarding Taylor's treatment. We went to see the Radiation Oncologist yesterday and she didn't think it would be a very good idea to do total lung radiation since Taylor's Pulmonary Function Test Diffuse amount was only 52 She said she could only make it worse and that this was not a decision to take lightly. We are already aware that this is a very tough decision, but we still have no idea what to do. We were going to pull up the CT scan together, but the machine was broke so the radiology department could not burn the doctor a CD of the scans so she needed that information to be able to tell us her opinion. She also said she had not heard back from some collegues she emailed to see if they had any medical evidence that doing lung radiation on Pediatric Ewing's patients to be beneficial. I advised that the oncologists believe that the tumors are causing obstruction in her lungs which is affecting the diffuse amount but she didn't think so. I have no idea what to do at this point. I just want them all to talk so that they are on the same page as it seems that they aren't.

We went to the clinic after the appointment to advise them of what we think the radiation oncologist's opinion was and I got the "grim look" which means if you don't do it you know there is nothing else we can do that we haven't already done look. I don't know how to explain it, but I have heard the grim prognosis talk one too many times and I know how aggressive her disease is. Anyway, we go back tomorrow to do another CT scan of her lungs in the radiation department. I guess they do their scan to gather more information and compare it to the CT scan done a few weeks ago. The radiation oncologist said we could radiate the area that is growing without further damaging Taylor's lungs. However, she has so much lung metastasis I don't know if this is worth it or not.

They also want to start Taylor on Avastin tomorrow which is a Immunological agent and/or antibody agent which works similar to Celebrex. I didn't know it was going to be an infusion when we discussed it a few weeks ago until yesterday. It looks like it will be a 90 minute infusion the first time and it goes down to 30 minutes if it is tolerated approximately every two weeks. They will either use this drug with radiation or if we don't do radiation they will alternate it with the chemotherapy regimen she has been on. Her platelets were 56,000 yesterday and we are four weeks out since her last round and she still has not met the minimum requirement of 75,000 for chemo. The bad thing about this drug is it is still considered experimental and there isn't any data on it in use for pediatrics. After reading the side effects, I'm sick to my stomach. Okay so we do this but it can cause heart failure or cause gastrointestinal perforation. Boy that makes me feel good. It is not a chemotherapy drug, but it works to cut off the blood supply from the tumor and therefore hopefully it will die.

I am very confused but I am really not too crazy worrying about all of this....yet. I just continue to turn it over to the Lord and let him guide us in the decisions we make.

Taylor and Jordan had a great time at the fishing derby last Friday. Wade Boggs was there again this year but it was really crowded this year so Taylor didn't fish with him this year. There were alot of fishing sports celebrities there that have those fishing shows. I only recognized one of them as I am not really a fishing sports fan. There were two or three fishing shows that were filming for their shows to air later. The girls fished for over an hour without catching anything. I kept thinking how is it that these guys actually have all these shows and get paid to fish. What's the big deal? Well, one of the guys came over and showed the girls how to bait their hooks just right and within five minutes the girls both caught a fish. I was so happy as it was the last five minutes that we were allowed to fish. The guy had put a microphone on Taylor and they were interviewing her for the show and he asked her, "so how does it feel to catch a fish"? Taylor just looks at him and says, "yea"?.....I about fell over as she said it so mellow and almost sarcastically. I thought, oh that's going to be a great show. However, when she caught the second fish...yes a second fish within five minutes, she got really excited and started dancing around. Ok, I guess these guys know what they are doing.

Please continue to pray for Taylor's healing and guidance in Taylor's treatment decisions.

Wednesday, November 9, 2005 7:10 AM CST

I took Taylor to the hospital yesterday for lab checks. Technically she was due for chemo yesterday, but I knew she wouldn't qualify since her platelets were only 43,000 on Friday. Needless to say, I didn't pack any bags to get admitted for chemo. Taylor's platelets yesterday were 42,000 and they have to be 75,000 for chemo so, no chemo this week.

I talked to the doctor again regarding doing a biopsy on the lesion in the lung that had grown since her last scans. I really wasn't too crazy about doing a biopsy since they would have to go into the lung and risk spreading more tumor cells by taking a sample of the mass; however I didn't tell the doctor I was totally against it either. God has always intervened and a lot of decisions have been made for us so I just let it unfold sometimes.

The doctor was able to look at her scans in July and compare them to the scans in October. They now tell us that they definitely think it is a Ewing's tumor because it grew three times the size in the three month period. If it were an infection it would not grow that rapidly. I didn't think it was infection because Taylor is not showing any signs of fever. However, she did have a cough and cold during scan time. It is hard to comprehend this since we were told last week that the only way we could tell was to do a biopsy and a pathology test to confirm tumor. I know in all likelihood it probably is tumor and more theories were explained yesterday as to why this might happen.

I was told that chemotherapy which is delivered through the body via blood and oxygen might not reach certain areas or be as effective in certain areas. We have done about 10 rounds of chemo since March and I already had come to the conclusion that it just can't knock out the lung metastasis. I have been thinking about this for months, but didn't want to deal with or put Taylor through lung radiation. I just hate seeing her go through more procedures unless we have no other choice. Taylor has had three main lesions in her lungs in addition to numerous spots throughout her lungs; too many to count. This is not something we want to rush into and I am meeting with a radiology oncologist on Monday to help make this decision. She is very knowledgeable and I definitely want her opinion as she has helped guide us through this type of decision before.

They predict a 90hance that the radiation will knock out the lung tumors so that is something we have to consider as if they keep enlarging they will constrict her lung capacity. They also want to put her on a new drug which is like Celebrex to hopefully keep the tumor on the hip from growing during radiation if that's what we choose to do. We are looking at doing radiation for 3 or 4 weeks everyday which will only hit the lungs and not affect the tumor on her hip. They will hold chemo as radiation affects the marrow as well so they can't give her radiation and chemo at the same time.

Well I guess we'll see what the radiologist says on Monday and go from there. Meanwhile, Taylor has felt great the past 4-5 days...better than I have seen her feel in months. She asked me last night at dinner what I discussed with the doctor as she said she had a right to know. I have always tried to protect her and Jordan from those dismal conversations, but she is right she does have a right to know. She already knows more than I want her to and she is very smart so I guess I have to involve her more in the decisions....she is 11 now as she tells me...going on 25. I tried to keep it as light and upbeat as possible and told her I don't tell her alot of things until I know that we are really going to do them as 50f the time they don't happen.

We are going to a Fishing Derby on Friday and alot of sports celebrities attend and fish with the kids as it is for Pediatric Cancer. I will never forget last year when Taylor was fishing with Wade Boggs, who is a very famous baseball player and was inducted into the hall of fame this past year. She is fishing with him for about 10 minutes and doesn't catch anything. So she looks at him and says, Ummmmmm I think I'll go fish with my dad now. She just left him standing there and I'll never forget the look of rejection on his face. The kids have no idea who these guys are and all the parents (mainly the dads) are running around taking pictures of them. Anyway, I can't wait to see who she gets to fish with this year. Both the girls get to fish so I am glad as Jordan enjoys it as well.

Continue to pray for Taylor's healing and guidance in her treatment. God Bless

Wednesday, November 9, 2005 7:10 AM CST

I took Taylor to the hospital yesterday for lab checks. Technically she was due for chemo yesterday, but I knew she wouldn't qualify since her platelets were only 43,000 on Friday. Needless to say, I didn't pack any bags to get admitted for chemo. Taylor's platelets yesterday were 42,000 and they have to be 75,000 for chemo so, no chemo this week.

I talked to the doctor again regarding doing a biopsy on the lesion in the lung that had grown since her last scans. I really wasn't too crazy about doing a biopsy since they would have to go into the lung and risk spreading more tumor cells by taking a sample of the mass; however I didn't tell the doctor I was totally against it either. God has always intervened and a lot of decisions have been made for us so I just let it unfold sometimes.

The doctor was able to look at her scans in July and compare them to the scans in October. They now tell us that they definitely think it is a Ewing's tumor because it grew three times the size in the three month period. If it were an infection it would not grow that rapidly. I didn't think it was infection because Taylor is not showing any signs of fever. However, she did have a cough and cold during scan time. It is hard to comprehend this since we were told last week that the only way we could tell was to do a biopsy and a pathology test to confirm tumor. I know in all likelihood it probably is tumor and more theories were explained yesterday as to why this might happen.

I was told that chemotherapy which is delivered through the body via blood and oxygen might not reach certain areas or be as effective in certain areas. We have done about 10 rounds of chemo since March and I already had come to the conclusion that it just can't knock out the lung metastasis. I have been thinking about this for months, but didn't want to deal with or put Taylor through lung radiation. I just hate seeing her go through more procedures unless we have no other choice. Taylor has had three main lesions in her lungs in addition to numerous spots throughout her lungs; too many to count. This is not something we want to rush into and I am meeting with a radiology oncologist on Monday to help make this decision. She is very knowledgeable and I definitely want her opinion as she has helped guide us through this type of decision before.

They predict a 90% chance that the radiation will knock out the lung tumors so that is something we have to consider as if they keep enlarging they will constrict her lung capacity. They also want to put her on a new drug which is like Celebrex to hopefully keep the tumor on the hip from growing during radiation if that's what we choose to do. We are looking at doing radiation for 3 or 4 weeks everyday which will only hit the lungs and not affect the tumor on her hip. They will hold chemo as radiation affects the marrow as well so they can't give her radiation and chemo at the same time.

Well I guess we'll see what the radiologist says on Monday and go from there. Meanwhile, Taylor has felt great the past 4-5 days...better than I have seen her feel in months. She asked me last night at dinner what I discussed with the doctor as she said she had a right to know. I have always tried to protect her and Jordan from those dismal conversations, but she is right she does have a right to know. She already knows more than I want her to and she is very smart so I guess I have to involve her more in the decisions....she is 11 now as she tells me...going on 25. I tried to keep it as light and upbeat as possible and told her I don't tell her alot of things until I know that we are really going to do them as 50% of the time they don't happen.

We are going to a Fishing Derby on Friday and alot of sports celebrities attend and fish with the kids as it is for Pediatric Cancer. I will never forget last year when Taylor was fishing with Wayne Boggs, who is a very famous baseball player and was inducted into the hall of fame this past year. She is fishing with him for about 10 minutes and doesn't catch anything. So she looks at him and says, Ummmmmm I think I'll go fish with my dad now. She just left him standing there and I'll never forget the look of rejection on his face. The kids have no idea who these guys are and all the parents (mainly the dads) are running around taking pictures of them. Anyway, I can't wait to see who she gets to fish with this year. Both the girls get to fish so I am glad as Jordan enjoys it as well.

Continue to pray for Taylor's healing and guidance in her treatment. God Bless

Saturday, November 5, 2005 6:43 PM CST

We went to the hospital on Monday for count checks. We didn't stay to find out what they were because I figured Taylor should be on her way back up. In addition, it was also Halloween so we had to get back in time to pick up Jordan from school, get her to twirling and get those girls back home to go trick or treating. Taylor had already received two platelet transfusions and one blood transfusion since her last round of chemo, so I figured she was probably good to go. Well, guess I was wrong because they called us and told us that she needed platelets again. Her marrow is just so tired. We went back to the hospital again on Tuesday to get platelets and I talked to the doctor about Taylor's scan results. They still didn't have answers as to why one area in her lungs appears to be growing rapidly. Their thoughts were to do a biopsy, which doesn't thrill me because they would have to go into the lung. A biopsy is the only way they can determine what this area is. It is either an infection of some sort, a lymph node or tumor. Ewing's has a family of tumors so it could be a different type of Ewing's cell which is resistant. The other bad thing about this is that if it is tumor and they go in to do a biopsy and any of the substance breaks off when they try to take a sample out, it could cause more tumor to develop. If the tumor is encapsulated and they go in with a needle and it causes it to break apart, more abnormal cells would probably grow thus causing more progression of the disease.

We went back to the hospital on Friday to recheck Taylor's counts and fortunately she didn't need anything. On Friday Taylor took a PFT (Pulmonary Function Test). Unfortunately,the results were not very good. She has had problems with her lungs since receiving chemo and now they think she has so much disease in her lungs that it is contributing to causing her lung capacity to diminish.

The possibilities of treatment we were given this week were trying to do transplant, but I knew that really wasn't an option because we can't do transplant unless she has no disease and we can't seem to get to that point. Since receiving a PFT and it was so bad, transplant is again ruled out as pulmonary failure is one of the main reasons fatalities occur during transplant. I know that a stem cell transplant is her only shot of any kind of a possible cure for this monster of a disease. Ewing's is a systemic disease, so it would make sense to get someone else's stem cells. I always thought that since she had an identical twin, that was the solution, but we keep getting a stop sign to doing this, so I know there must be a reason I don't understand. The other options were possibly radiating her lungs, which is not too good of an option either. It can cause further damage because it can cause pleurisy which is kind of like a helium balloon that slowly deflates and does not recover, thus affecting her lungs in a negative way. This is something we have avoiding doing for a very long time, but now if we don't do something and the tumors continue to grow in her lungs that is not good either. The other options were to add another drug similar to Celebrex which works to cut off the blood supply to the blood vessels of the tumor and thus hopefully it would die.

We still don't know if we will be doing a biopsy next week or not, it just depends on a surgeon's opinion to see if they can reach the tumor in the lungs and how risky the surgery would be. If it is too risky, we will probably have to rescan her in a few weeks again to see if the area is still having abnormal growth occurring.

Well this all very confusing and frustrating so I don't know what choice is the right choice as none of the choices seem to be too good right now. I'll take "D" none of the above please.... All we can do is pray and ask for guidance from the Lord. We hope to know what we are doing next week by Monday. Taylor's platelets were only 43,000 so I doubt she will qualify for chemo next week because they have to be 75,000. If we do a biopsy, it will probably be mid week. Please continue to pray for healing for Taylor and guidance in her treatment decisions. God Bless

PSALMS 118:8
It is better to trust in the LORD than to put confidence in man.

Monday, October 31, 2005 9:04 AM CST

We had another very busy week last week. Taylor was scheduled to have scans last Monday morning, which was the same day that Hurricane Wilma was to hit south Florida. We were very fortunate that a cold front blew in and kept the storm south of us. Since school was out, I really wanted to get those scans done so we could take Jordan with us as she helps Taylor so much when she can go to the hospital with us. So I drove through the worse part of the storm Monday morning to get to the hospital by 8:00 a.m. It really wasn't too bad except for some wind gusts on the way and alot of rain. It was really nice though to be able to leave at 7:00 a.m. and not have any traffic to deal with. Once we got to the hospital, no one was in the clinic either and most people cancelled their procedures in the diagnostic center so basically the storm helped us get through the day easier.

We were able to get through the MRI and CT last Monday and Taylor had to have platelets as expected so we were there most of the day. We went back on Wednesday and we had the bone scan done. We had to return to the hospital on Thursday to get her counts checked again and Taylor needed blood and platelets on Thursday so we were there all day Thursday too.

We have gotten the scan results which are confusing the doctors. Her MRI was stable which looks at tissue and through the bones. She still has the main tumor in her iliac tissue which is in the hip bone. It also shows disease at L3,4 and 5 on her spine, but I don't really know if it is really disease as it has been unchanged for months and she had radiation to that site. I don't think they reviewed her file to see that she had radiation to that site as when we went to get her CT the tech had no history to go off of and told me that the MRI tech gave him no information. That's a little unsettling since she has had numerous scans there you would think they would review the file, but that's not always the way it goes. Once you have radiation to a site it is always going to look abnormal.

Her CT was the confusing scan as she has several spots in her lungs that are very small. These have been there since she relapsed in February. However, she has three main lesions in her lungs and two had significantly decreased and one had significantly increased. This is what is confusing the doctors as it either gets better or worse. They tell us they have never seen this before in a Ewing's patient. Their theories are that either the lesion in the lung that had increased developed during the three month period that she didn't have scans and now maybe it is smaller or the lesion in the lung that increased is due to different types of cells which are resistant which means a possible second malignancy. The bone scan was stable as well and stated that there was possible improvement in the iliac bone where the tumor is present. They are going to discuss Taylor's case tomorrow in their weekly meeting to decide what we do now.

Although we had a very stressful week, I really didn't focus on the scan results as I know it is important medically, but I just can't let it determine our happiness. We know that everyday is a gift and that we will live each day to the fullest with Taylor and Jordan.

The girls had a wonderful birthday and since Taylor received blood on Thursday, she felt great on her birthday which was Friday. We had a great birthday dinner Friday night at the Melting Pot. The girls absolutely loved going there as you get to cook your own food at the table. The girls had a great birthday party as well on Saturday. We played laser tag and I must say Cary and I thoroughly enjoyed shooting each other with the Laser Gun. I think we had more fun than the kids. Let's just say that I can run alot faster than he can....hahaha. I knew that going to aerobics for 20 plus years would pay off. Well we have to go to the hospital again today for count checks so I need to get going. Please continue to pray for Taylor's healing and that the doctors can determine how we need to proceed with Taylor's treatment.

Friday, October 21, 2005 10:04 AM CDT

Well we have had quite the busy week. Taylor was supposed to go in for chemo on Thursday but the Cancer Center was having a chocolate fountain and a magician Thursday night so we opted to go in on Tuesday for Chemo. It was a little tricky as Jordan started running a fever Monday night and I took her to the doctor Tuesday morning to make sure she didn't have strep. Fortunately, she tested negative and she wasn't running a fever on Tuesday morning but I kept her out of school as she wasn't feeling very good. I just decided to take Jordan with us to the hospital and fortunately we were the only people in the clinic (which never happens) so both the girls got their own beds and laid side by side waiting on count checks. Taylor barely qualifed as her platelets had to be 75 and they were 78 so we "won the ticket" to be admitted. I have class on Monday and Wednesday nights so things were a little crazy, but we were able to get chemo out of the way and make it to last nights meeting at the Cancer Center. I will say it was a record turnout, due to the chocolate fountain. All the kids as well as the adults thought that was great.

The girls got their report cards yesterday and Taylor was so thrilled as she made straight "A"s. She was so happy she began to cry as this is the first time she has made the Principal's Honor Roll since she has been diagnosed. Jordan made the regular Honor Roll so we are very proud of Jordan as she has struggled since Taylor's diagnosis as well. We are so proud of the girls and we are going to take them to the Cheesecake Factory this weekend hopefully to celebrate.

Taylor's PET scan was cancelled due to insurance denying it which they typically do. They don't think it is a relevant test for Ewing's Sarcoma patients. I'm not upset at all as Taylor would be injected with more nuclear medicine for the test which is always a scary thought. Things are going to be a little easier than originally thought as we don't have to be at the hospital on Monday until 8:00 a.m. so she can get her port accessed in the clinic Monday rather than leaving it accessed all weekend. Monday she has a MRI at 9:00 and a CT at 11:00 so please be praying for Taylor as scans are very difficult for her. She has to drink the yucky contrast for the CT which is always a challenge. On Wednesday she has a bone scan at 11:00 but we have to be there at 8:00 for a nuclear med injection which takes 3 hours to work it's way through the body. I imagine she will need platelets on Monday as well so we will probably be there all day.

Please be praying and believing for Taylor's healing and that the scans are improved, stable or clear! The girl's birthday is next Friday so I hope we get good news as it will be harder than usual to cope with if the results are not good. We will probably have the CT/MRI results by Wednesday and the bone scan by Thursday or Friday.

I sought the Lord, and He answered me; he delivered me from all my fears." Psalms 34:4

Sunday, October 16, 2005 8:00 AM CDT

Taylor has had a much better week this past week. Taylor received blood last Monday which made all the difference in the world. She hasn't received blood in a while because she had been running borderline and they won't transfuse her unless it is absolutely necessary. I was so glad she got blood because she had really been struggling going up and down our stairs at home because her hemoglobin was low which affects her bodies ability to make oxygen.

Taylor hasn't had any night terrors this past week either which is such a relief. She was able to go off her GCSF injections last week too so I think that really affects her anxiety level dreading getting a shot everyday.

Unfortunately, the next few weeks are going to be very stressful. Taylor is supposed to be admitted for chemo on Thursday and Friday. She will get to come home late Friday if everything goes well, but she will have to keep her port accessed as we have to be at the hospital again on Monday Oct. 24th for a scan at 7:00 a.m. Taylor will not let any other nurses access her port except for a select few in the clinic and they don't come in until 8:00 so that's why we will have to leave her port accessed.

Taylor is supposed to get a PET/CT and MRI on the 24th, but I'm not sure if we will get the PET scan or not which is the very detailed scan which measures metabolic activity that you can't see on a CT or MRI. We got a denial letter for the PET scan on Friday from our insurance company so we'll see what they say tomorrow about it. Taylor is supposed to get a bone scan on the 26th so we will probably just leave her port accessed for the week until she is done with that.

In addition we are trying to plan a birthday party for the girls around chemo and scans which is heartbreaking to have to work around that for the 3rd year, but we will do the best we can. On the flip side, we are very grateful and blessed that Taylor is here to celebrate her 11th birthday so we will focus on that blessing rather than worrying about dealing with all the other stuff. It's just hard for Taylor to deal with and she doesn't understand why we can't just not do the chemo and scans. I try to explain things the best I can but I know it is hard for her. The girl's are very excited about their birthday which is on the 28th. We also got their costumes for Halloween which is one of their favorite holidays as well.

Things are going ok with the puppy situation. I have spent more time in my backyard over the past week than I have in the past 5 years I think trying to potty train the puppy. She is going potty everytime she goes outside which is alot but she is still going in the house as well. We no longer have any bathroom rugs in the house and we keep all the bedroom doors shut. Fortunately we don't have carpet downstairs so that is not too much of an issue except for the fact that she always wants to go upstairs.

Please continue to pray for Taylor's complete healing and that the next few weeks will go as smoothly as they can. There are always complications and snags but pray we will find grace and peace during this stressful time. Pray for improvement or better yet that the cancer is gone!

Sunday, October 9, 2005 4:22 PM CDT

Taylor has had an up and down week this past week. Last Monday Taylor received platelets which was pretty much expected. She has been receiving a transfusion of platelets after each round of chemo but last week she ended up getting a platelet transfusion on Monday and Friday. Platelets only last 72 hours. Normally she has been able to start making platelets on her own after one transfusion, but her body is having a harder time producing them.

Taylor has been struggling with what they call "night terrors" lately. It started about 4 or 5 weeks ago with mild sleepwalking which at first I thought was cute. However over the past few weeks she has been waking up several times a night in a complete hysterical panic. She is obviously asleep but she is saying all kinds of things crying, shaking uncontrollably and walking all around her room this way. She doesn't realize that I am there and there is nothing I can do to calm her down. On Wednesday night she woke up three separate times in this mode. On Thursday she starting having back pain and I told her to lay down and take a nap but she started crying and saying her back hurt and that she couldn't lay on her back or right side. I took her to the hospital because she just didn't seem right with the pain and I had to get her labs checked again anyway. Her back pain is not on the spine where the tumor was or is, but if tumor is pressing on nerves in the spine it can cause pain anywhere. When we got to the hospital the pain had gone away but they told us Taylor needed another platelet transfusion so we had to go back to the hospital on Friday because we didn't have enough time to get it done on Thursday by the time the labs came back.

Taylor continued to have night terror on Thursday night and only a mild episode on Friday night. After talking to her pediatrician and oncologist everyone seems to think it is related to anxiety and stress rather than her disease. Meaning they don't think it is anything neurologically related to the disease as far as the night terrors go. The bad thing is that they won't give her anything to help her sleep and we just have to work through this. She is just so tired of her life being out of control for the past two years. She hates that I have to give her injections everyday so that has been a huge source of anxiety everyday in addition to worrying about chemo, school and scans. I don't know what to do other than try and talk her through it. Needless to say I am completely exhausted from worrying and being up at night but I hope we have a better week next week. Taylor woke up Saturday feeling like herself again and she said her back no longer hurt. I don't know if it is anxiety induced or from her platelets and hemoglobin being so low or the tumors growing or what.

Dad decided to get us another dog this past week. It was supposed to be a "gift" for me but I was overwhelmed with the thought of having another thing to take care of. I'm thinking jewelry would have been good. We had a cocker spaniel for 14 years and she was a great dog. Well she passed away 3 years ago and that's when the girls saw a golden retriever puppy on TV so guess what...we have one that is 70 pounds now. It took us 2 and 1/2 years to get our Golden Retriever potty trained and calmed down and our cat is such a mess I was pretty overwhelmed with getting a puppy. Of course I was up with the puppy Friday and Saturday night while everyone else is sleeping so that has been an added stress as well. So now we have two dogs and a cat...whoohooo. She is very cute, sweet and loveable, but I am already overwhelmed as she has pooped everywhere and pottied all over the house. Gosh I guess I'm just completely exhausted and stressed out this week as well. I can only hope this week will go better. I think the puppy has helped calm Taylor down as she slept through the night Friday and Saturday so maybe this will be a good thing. Please continue to pray for Taylor's complete healing and peace with everything she has to deal with. Please pray for strength for me to be able to deal with the stresses Taylor is having so that I can help her. God Bless.

Tuesday, October 4, 2005 7:35 AM CDT

Taylor was admitted for chemo Tuesday and Wednesday of last week. She handled things pretty well except for late in the day Wednesday when she ran out of movies to watch. I think she just became lonely and emotional as she misses Jordan so much while we are there. That school thing really gets in the way sometimes....hahaha

The biggest joy while we were there was seeing our friend Jacob being able to go home after 58 days in the hospital. I don't think I've ever seen his mom so happy before. I had mentioned in my journal about 4 or 5 weeks ago that the dad said the most impressionable thing in the most grim moment. It was simple but yet amazingly faithful. As they were told the worst news, Jacob's dad said "I know God can heal Jacob as sure as he can just sit up and eat a piece of pizza and walk out of here". Imagine being told your child only has a few days, yet still having this kind of faith. As I saw them packing up to go home, I became overwhelmed with the love and amazing grace God has revealed through them and also through Taylor. Both of these kids are miracles and I think that the power of prayer in our church, community and many other prayers sent our way have been amazing. I think God is truly working some miracles through these children for all to see.

Sometimes I just can't believe that we are here since we moved here from Oklahoma a few years ago. How is it that God placed us here in this city where we have excellent medical care and great support from the community. Tampa has so many great pediatric cancer organizations that many other cities don't have. We went to a meeting a few weeks ago at the Children's Cancer Center and the Pediatric Cancer Foundation was there and they announced that they are heading up a huge research project to put together a Sarcoma research group. There have not been any new drugs developed in 40 years for sarcoma so that was great news to hear that someone is going to do something about it. They will get many doctors to put their heads together to find a cure for this disease. It may take another 5 or 6 years to find a cure, but at least it is in the works.

Taylor was able to come home Wednesday night from the hospital. She felt really bad Thursday and later in the day she started feeling so bad that I was afraid to take my eyes off of her. Amazingly though after she woke up a few hours later she was a completely new kid. She was happy and alert as if a switch had been flipped. Taylor went to school a half day on Friday. Yesterday we went to the hospital for labs and she ended up getting platelets so we were there most of the day.

Our family did a commercial about a month ago so if anyone wants to see it you can go to www.childrenscancercenter.org. It is very moving and the cancer center is such an amazing source of support for the families.

Taylor tenatively has scans scheduled on October 24 and 26th. The girl's birthday is on the 28th so I am not so sure that is a good idea to have scans on those days so I may get them changed. I told them they were really pushing the envelope scheduling them that week as the girl's birthday is right up there with Christmas in their eyes. I don't want the results before, during or after their birthday unless they are good and then it's ok to call me 24/7. hahaha. They are wanting to do a PET scan this time which is very scary as it is a very accurate test and picks up activity that you can't see on a CT or MRI so I am very nervous. It's like I want to know...but I don't. I am asking for prayer for Taylor and our family to get through the scans. Pray for healing and that the cancer is gone. I know medically that is a stretch, but God's power is not limited so we will put our faith and trust in God whatever the results may be.

Monday, September 26, 2005 9:40 AM CDT

Hello Everyone.

I hadn't planned on doing a journal entry today, but since I'm quite emotional today, I just needed something to help me get through the day and this journal is therapy for me. Today is the 2 year mark which Taylor was diagnosed which is hard to believe.

Taylor has been restless this past week and she has been having nightmares, sleepwalking and lots of anxiety. She woke me up Saturday night shaking because she had a bad dream. She wouldn't tell me what it was about because it scared her so much. Last week she started feeling "not like herself" as she puts it which always scares me. I hope it is just that her counts were pretty crummy last week and that was causing her to feel tired. She knows we are going to be admitted for chemo tomorrow and scans are coming up again in a few weeks, so I think all of the stress is taking a toll on her and she worries about missing school when she is in the hospital or not feeling well. I tell her over and over not to worry but she does anyway....I can't imagine where she gets that.

Saturday night we went to the hockey game which was a great feeling after not having hockey for 15 months. Taylor was very excited as we were given the opportunity for her to ride on the Zamboni after the 2nd half. We were only given the opportunity for one of the girls to ride so we played the "quarter game" where they each had a quarter along with dad and they all flipped the quarter until one or the other's quarter matched dad's. It took five times as they all three kept coming up with the same side of the quarter. Taylor won the quarter flip after five times so she got to ride on the Zamboni.

I have been participating in a women's study for the past 3 weeks which is called Walking by Faith - Lessons Learned in the Dark. It is so appropriate and each day has not surprisingly corresponded with what our family is going through. Cancer has definitely been a lesson learned in the dark. After all, Taylor has been doing chemotherapy for two years even though we can't see what is happening inside her little body. Talk about a faith journey. Taylor has scans in a few weeks and I am always a wreck several weeks leading up to the scans because that's when you find out if the chemo is working or not. I will say though, that every lesson in the study has helped me tremendously deal with the anxiety of the unknown. It is also amazing that on the past few Sunday's the pastor has spoke alot about faith as well and rejoicing in tough times, referencing some of the same scripture we have had in the study. God is speaking to my heart daily by reading the scripture and then basically I am hearing the same scripture on Sunday. Is this a coincidence... yes I call it a God Coincidence.

I read Philippians yesterday and my bible paraphrases things so you can understand them better. As I was reading the paraphrase, one thing really stuck out to me. It said,
Happiness is based on happenings, but joy is based on Christ. That was such an eye opener for me. Yesterday a beautiful song was sung in church called "If You Want Me To". I was so touched by the song and was trying to write down some of the words, but didn't get much of the song down. The song is basically about going where God wants you to walk even though you don't understand where it is taking you. This morning when I went on the site to update(even though I hadn't planned to), I read an entry from Patty who sang the song yesterday and sent me the words of the song. I cannot tell you how much that touched my heart and again shows me how much God loves us. Not to mention the person who wrote the song is blind. God keeps telling me not to look at things seen, but look at the unseen. Please continue to pray for Taylor's healing, that chemo will go well this week and that her scans will be improved or stable.

The pathway is broken
And the signs are unclear
And I don’t know the reason
Why You brought me here

But just because You love me
The way that You do
I’m gonna walk through the valley
If You want me to

Cause I’m not who I was
When I took my first step
And I’m clingin’ to the promise
You’re not through with me yet

So if all of these trials
Bring me closer to You
Then I will go through the fire
If You want me to

It may not be the way
I would have chosen
When You lead me through a world
that’s not my home

But You never said it would be easy
You only said I’ll never go alone

So when the whole world turns against me
And I’m all by myself
And I can’t hear You answer
my cries for help

I’ll remember the suff’ring
Your love put You through
And I will go through the valley
If you want me to

Wednesday, September 21, 2005 6:31 AM CDT

Taylor has struggled this week with fatigue and dizziness. When we went to the hospital last Thursday for labs, Taylor's hemoglobin had gone down rather than up. Basically every time we went to the lab this past few weeks her counts went down rather than up, but not low enough for a transfusion. She was at 8.0 and a transfusion is usually needed when the hemoglobin is around 7.0 - 7.5 depending on the person. So needless to say she has not felt her best the past few days. We had planned to get chemo tomorrow, but we made an unexpected lab run on Monday because Taylor was so fatigued and dizzy. By the time we got her to the hospital she felt better but her counts are not recovering very well. In fact her white count went down again and her platelets had not gone up since last week so we are postponing chemo until next week.

Taylor went back to school this morning and she seems to feel much better. I think she has been trying to lead a normal life and it just caught up with her. Plus her marrow is continually suppressed which makes stem cells which make white blood cells, red cells and platelets. Her body is struggling to do all of this and each time she gets hit with chemo her marrow becomes more suppressed. I hope that is all that is going on as it is always in the back of my mind that the disease might be progressing but we have to hope that is not the case.

Next week is the 2 year mark for Taylor's diagnosis. We are going in on Tuesday for chemo. Her diagnosis date was 9-26-03 and we are going in on the 27th. When I look back over the past two years I am amazed what she has been through yet never expected to still be in the hospital two years later, still treating. I am amazed and thankful that Taylor is still fighting this battle. Although I wish we would have won by now, we still continue to fight this disease. Two years ago she was 30 percent chance of survival. When Taylor relapsed 7 months ago her chances of survival went down, but we are not going to focus on that as Taylor is a miracle and only God controls our lives and our life expectancy.

I went to the gynecologist this past week and as I sat in the waiting room watching all the pregnant women come in and out I began to reflect thinking about the wonderful experience I have had giving birth to Taylor and Jordan. All of the women that were pregnant were happy and beaming as they are all carrying new life. Most women never expect to have a child with a disability or illness. Most people have great expectations of having a beautiful, healthy child but we don't think about what can happen if we don't. I was one of those moms. Although I was challenged with a twin pregnancy, I never thought for an instant that anything would go wrong. Even when I was in a car wreck that sent me to the hospital having contractions at 27 weeks, I never worried about it. I always knew that God was going to be there and was in control. I'll never forget the look on the guy's face that hit me when I got out of the car as I was bigger than a barn. He was a manager for Subway and gave me all kinds of free coupons for Subway sandwiches which I took full advantage of. When the girls were born 6 weeks premature, I was never worried even though Jordan was having problems breathing on her own and the girls had to stay in the hospital for 2 weeks. I never worried that it wouldn't be ok.

When Taylor was diagnosed two years ago, I was so shocked that one of my children was diagnosed with cancer. I'll never forget when they transferred us to the cancer unit I couldn't understand whey they were putting us there even though they had told us Taylor had tumors. It just didn't register. When they told us Taylor had a 30 percent chance of survival two years ago we were devastated. When they told us her chances were none that she would survive relapse, I believed it at first, but God has done wonderful things for Taylor and our family and I don't focus on that, believe it or claim it. I have a greater faith in God then faith in known medical knowledge. I understand the medical side of cancer and we are so grateful for all the excellent medical care Taylor has had. We can't put all our hope and faith there, especially since there are not any new drugs out there for her disease that she hasn't already had. Although I would never wish cancer on anyone, I am grateful for all the wonderful people we have met and all the blessings we have experienced. God has used Taylor to reach thousands of people and she has truly shown me the face of Christ. I really don't think I would have ever grasped the blessing of life. I mean really, truly feeling it. It is something we all take for granted but when we are faced with losing it, things have a completely different perspective.

The picture this week was taken of the girls at 3 months. Can you tell which one is which? I don't understand why one twin gets cancer and why one doesn't. They look just the same on the outside, they did everything at the same time on the inside such as poop at the same time, get sick at the same time...need I say more. It was almost a simultaneous event with them so why did this happen to Taylor. I may never know the answer to this question, but I know God has a plan even when we can't see it. Although cancer has changed Taylor's appearance and people don't recognize the girls as being twins anymore that don't know us, we have all been changed on the inside beyond our comprehension for the better. I thank God for the joy, love, kindness, patience and beauty he has shown through Taylor and Jordan. Although Taylor is not perfect physically due to cancer and this would not have been my plan, I know she is perfect spiritually in God's eyes. God did not create cancer and its the miracles he works through illnesses that touch people's lives and bring us closer to him.

Thank you everyone for all your love and support for our family over the past two years. We could not have gotten through this without all your prayers and help. Please continue to pray for Taylor's healing and blessing on our family. We really appreciate all your comments on the site.

Tuesday, September 13, 2005 8:02 AM CDT

Taylor had a pretty good week. Taylor really has struggled with being tired, but other than that she is doing really well. We went to the hospital again last Thursday and yesterday for counts. Both days she was borderline which means she didn't get any transfusions. I can tell each chemo round is taking its toll and her marrow is having a harder time recovering.

Last Thursday night our family had the honor of doing a commercial along with some other families for the Children's Cancer Center. Brad Richards was there who plays for the Tampa Bay Lightening as well as Michael Clayton and Simeon Rice who both play for the Bucs. Simeon snuck in and out though so we didn't see him. Shane Stafford was also there who plays for the Tampa Bay Storm. All these athletes support the Children's Cancer Center and the kids. It is so wonderful to see how athletes use their gifts and talents to help such a worthy cause. Taylor and dad had a speaking part while the rest of us just had to look at the camera and look pretty. I think we must have looked really terrified as the director told us it was ok to smile. Taylor of course did great with her lines and the director thought she was so cute and asked her to change things up a little bit, but I guess she hammed it up too much so they didn't use that shot. She has that little high pitched voice that is so cute. Her and her sister were not nervous at all as they love to be in front of the camera and have told me that they are going to be stars someday on numerous occasions. They are already stars to me.

Last week I shared how even though your circumstances may not be the best, your soul can still be at peace. Well last Thursday I started a new study group. I had not looked at the book at all. I was blown away by the video and theme of the study. The video said exactly what I shared last week about faith. In fact the study is called "Walking by Faith" Lessons Learned in the Dark. The author of the book is blind due to a degenerative eye disease so she knows how to Walk by Faith and Not By Sight. One of the things she said in the video was:
"WE CAN'T ALWAYS CHOOSE OUR CIRCUMSTANCES ON OUR FAITH JOURNEY". That phrase was so appropriate and applicable to what has happened with Taylor.

A person walking by FAITH: Is willing to take a step; follows God and gives up control; responds with thankfulness; perseveres, endures and is guided by truth and is WILLING TO WAIT ON GOD.

A person who walks by SIGHT: Usually plays it safe, seizes control; responds with bitterness and anger, quits, is influenced by feelings and Waits on THINGS from God.

I will never forget that when I lived in Orlando I use to teach aerobics with another instructor who was blind. I was always amazed at her positive attitude and her ability to teach step aerobics without being able to see the step let alone learn the choreography. If you have ever done step aerobics you know how you go up and down, back and forth, flip and turn and almost turn upside down. The lesson I learned from her was that she trusted that the step would always be there even when she could not see it. She trusted that all the people in the class were there and following her even though she could not see them. I never saw her fall, not even one time. If we can keep our eyes on God and have faith that he is there even when we cannot see him, feel him or touch him all can be well with our soul.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Taylor put together a card for Hurricane Katrina victims that she wrote herself. She read it to me last night and it was so touching I thought I would share it.

Taylor wrote: What Hurricane Katrina cannot do:

It cannot take away freedom.
It cannot destroy hope.
It cannot take away love.
It cannot band joy forever.
It cannot corrode faith.
It cannot silence courage.
It cannot suppress memories.
It cannot kill friendship, but most of all it cannot take away spirit.

Please continue to pray for Taylor's healing and all families battling cancer.

Tuesday, September 6, 2005 2:07 PM CDT

Taylor was admitted for chemo last Tuesday as expected. Things went pretty smoothly until about 4:30 a.m. Wednesday morning. Unfortunately, when the nurse came in to draw blood on Wednesday, she could not get blood return which means her port was not working properly. Needless to say, Taylor was not too happy and the nurse could not get her port to work. After several minutes the nurse was going to order some TPA which typically can unclog a port. However, we would have to wait on the drug from the pharmacy which would delay Taylor's chemo and thus delay her discharge. Taylor was very upset and kept telling the nurse to put heparin in the port to unclog it, but the nurse didn't think it would work. So the nurse took off the tape from Taylor's port and moved the needle all around which is not fun for Taylor and not fun for me to watch as Taylor was screaming through all of this. I was getting very nervous because if they couldn't get the port to work it would mean deaccessing her and reaccessing her with the needle. All the time Taylor kept asking the nurse to put heparin in her port to get it to work. Another nurse came by the room....probably heard Taylor screaming....and suggested putting heparin in to unclog the port as well. She ran and got some heparin and after working on the port with heparin for a few minutes it began to work again. Hallelujah! After the nurses left, Taylor said I just wish they would listen to me and just because I'm 10 years old does not mean I don't know what I'm talking about. Ya know, she's pretty much right about these things. Fortunately, the rest of the morning and day went well.

Taylor had a science project due on Friday so I had taken all the materials to the hospital. She had to make something out of a recycled product. I took the cooler that her GCSF medicine comes in with alot of other trinkets as well as spray paint. We made a beautiful treasure chest and we didn't get in trouble for using spray paint in the room as we kept the door closed so no one would smell the paint. We didn't blow anything up so that was good. Taylor was so proud of her treasure chest and it made the day go by very fast. She took it to school on Friday and of course we had to fill it up with candy to make it a true treasure chest. Her teacher loved it as well as all the kids.

We had a very laid back weekend as Taylor felt pretty tired so we just hung around the house all weekend. We were afraid to go anywhere because at the beginning of the weekend there was no gas to be found so we stayed home. I had filled up two gas cans earlier in the week for emergency trips to the hospital which was an effort. So far I have had two neighbors borrow gas for their lawn mowers this past weekend. I'm so glad I carried those cans in the car and drove all over looking for gas! hahahaha Oh well I guess everyone's lawn got mowed this weekend. By the end of the weekend things had calmed down with the gas situation.

We thought about the hurricane victims all weekend. I can't help but wonder if any of the hurricane victims were pediatric cancer patients and what would happen in that situation, especially since we experienced four major hurricanes last year. I prayed all weekend that if there were any in this situation that they would find help. What a scary thought! I can't imagine what we would do in a similar situation.

Today we went to the hospital and Taylor's ANC was a whopping 132 which means 132 from 0 which is very low. Taylor received platelets today and is resting now.

I can't believe that we are only 20 days away from hitting the two year mark since Taylor was diagnosed. We have had alot of ups and downs, but I think these past few weeks have really taught me a lesson (another one) about faith. One of our friend's children was given grim news a few weeks ago and told to "call in the family". When we went to visit them in the midst of despair, the dad said one comment that I will never forget. He said "I know that my son can be healed as quickly as he can sit up and want to eat a piece of pizza and walk out of here." As I wanted to believe this with all of my heart, knowing what I know about cancer and how it works, I was amazed they were still hopeful and had faith even when things were so grim. I thought you know he is right and I would do the exact same thing in never giving up on my child until the last breath was taken and never limiting God's ability to perform miracles. I am happy to say the child has done a turnaround that the doctors cannot explain.

Some days I get down thinking will we ever get past this, but then I realize to be grateful for every moment we have with Taylor no matter what the circumstances are. Even though our human side tells us that these are not the best circumstances, our spiritual side can remain faithful, hopeful, grateful and undefeated even in the midst of these times. These are the times that draw us closer to God so I am grateful for that.


Please continue to pray for Taylor's healing and all children battling childhood cancer.

Sunday, August 28, 2005 7:38 PM CDT

Taylor has had another good week. Last week she struggled with feeling achy on a few days and being tired but other than that she is doing wonderful. I always get scared when she tells me that her legs ache, but I think it was from climbing a thousand stairs last weekend at Typhoon Lagoon. We are scheduled to go in for chemo on Tuesday. I am sure Taylor will qualify this week as she is definitely feeling much better getting an extra week to recover from the last round of chemo.

It is so nice to do all the simple things people take for granted like going to birthday parties, church and going to normal kid activities. As I picked the girls up one day this week at school, they both came running to the car as they were chasing each other horsing around. I was so happy to see Taylor running and laughing which is something I know is precious. I picked the girls up from Club 45 tonight which is a group at church for 4th and 5th graders. Taylor, Jordan and their friend were laughing all the way home and it was just so great to hear. She also cooked dinner tonight all by herself. They had pizza at Club 45, but she didn't eat so she could come home and cook dinner. I'm not talking chicken nuggets and fries, I'm talking grilled chicken florentine and twice baked potatoes! She was so cute with her pajamas on and her little apron.

This week I am grateful Taylor is doing as well as she is right now. As we see other children suffer so much this past week with cancer, we are so very grateful to have a good week and it always reminds me to take each moment as a gift. I just feel so overwhelmed today with just being thankful for everyday and not focusing on things that don't really matter. What truly amazes me about Taylor and other children battling cancer, is that they have a great appreciation for life that you can see in their eyes. Taylor is just happy being a normal kid and being able to go to school. She always grabs me and hugs me so hard; it is just a wonderful feeling. I don't even think she realizes that she has cancer at times which is a good thing. Please continue to pray for Taylor's healing and that chemo will go well. Taylor's disease is still present, but she continues to bless us and amaze us with her uplifting attitude and ability to smile. Please continue to pray for all families battling cancer. The picture this week was taken of the girls in February before Taylor had relapsed and her hair was growing back. She is finally ok with people seeing this picture as she was still wearing her bandana at this point even though she had so much hair at the time. Believe me it was a major ordeal to get her to take her bandana off for the picture. I guess it was a source of security for her. The photo was donated to us as a gift when Taylor was in the fashion show for the Pediatric Cancer Foundation. Most of the photos were taken of mothers and daughters that had cancer, but I told them I couldn't take a photo without Jordan, so they opted to let the donated photo be of the girls. I am so glad to have such a beautiful picture of the girls.

Tuesday, August 23, 2005 8:04 AM CDT

Taylor has had another pretty good week. We went to Typhoon Lagoon on Sunday and had a great time. We rode every water slide in the park...we won't tell Dr. Tebbi about the one Taylor went down that plumets you down at 35 mph! None of us really liked that one as you go down so fast in the dark you can't really see anything until you hit the bottom in which you get a major wedgie. We always try to do something fun the weekend before chemo.

We went to the hospital yesterday all packed and ready to go for a chemo admission. On the way home Sunday night, Taylor advised us that she wasn't going to qualify for chemo and guess what she was right. I guess she has a feel for this by now. Her platelets have had a really hard time recovering since getting this last round so we have to wait until they get to at least 75. Keep in mind a normal person's platelet count is 150-450,000. You never know whether to be happy or disappointed as you know you have to come back. We are going to try again either on Thursday or Monday. Needless to say, Taylor was pretty happy about not having to go into the hospital.

Taylor complained about dizziness on Saturday and Sunday which always scares me as she had major dizziness in February when she was relapsing. It is so easy to think the worse but you have to keep the focus on God and enjoying every moment you have. It could be anything including dehydration or low blood counts. Taylor has really been pushing herself since school started as she does not want to miss school or be any different from anyone else. Both Taylor and Jordan are teacher helpers this year so they both have to report at 7:30 to help out the teacher they are assigned to which really gives them something to look forward to. It really helps Taylor as getting her up in the morning is the hardest part for her.

I just want to thank a few people who contacted me about the segment they saw on CNN about a girl with Ewing's Sarcoma that is in remission. I watched the segment and it was so similar to Taylor's case as the little girl had a tumor on her spine just like Taylor's. In fact when I saw the segment I was shocked as it looked exactly like Taylor's tumor except it was on a different part of the spine. The little girl in the segment had the same symptoms Taylor did. I contacted M.D. Anderson and actually talked to the doctor in the segment, but again Taylor does not qualify as they will only take newly diagnosed patients for the study. They used the same chemotherapy Taylor has already had, but they added a drug called Immther which they attribute to helping the child continue to be in remission. The segment is only about 4:00 minutes long and is very interesting if anyone wants to see it. They are taking this drug off the market because it is not making the drug companies enough money. It is very sad and frustrating that these things happen but they do. The first thing M.D. Anderson asked me was what kind of insurance I had, not how can we help your child. All the research hospitals ask you that and I understand as Taylor has racked up almost a million dollar tab, but it is disturbing at times. I already knew that they would not take our insurance, but told them if there was a therapy that would work perhaps I could push my insurance company to go out of network. They said they don't really have anything and they only have enough of the drug Immther to treat 60 kids and then the drug is going to be taken off the market and Taylor does not qualify because she has relapsed. Sometimes I just don't understand how there could be a drug out there that could possibly help Ewing's patients but because it does not make enough money it will not be manufactured. These are the kinds of things that just break my heart.

http://www.cnn.com/CNN/Programs/presents/shows/taming/interactive/the.story/frameset.exclude.html

(the Ewing's story is "A Child With Cancer")

Please continue praying for Taylor's healing as I believe God's grace and Taylor's great attitude have gotten her to this point which is way beyond the point any of us thought she would get to. We are definately not out of the woods and may never be, but we look at each day as a gift and can only take it one day at a time.

Monday, August 15, 2005 4:22 PM CDT

Taylor has had a pretty good week. We went to the hospital last Thursday and today for blood count checks. Taylor's counts are pretty low, but not low enough for a transfusion. She slept 12 hours on Saturday night and Sunday night, so I was concerned that she might need blood today but her hemoglobin was not quite low enough. Hopefully she is on her way up with her counts and not on her way down. We had a pretty laid back weekend since Taylor didn't feel like doing a whole lot.

Basically we have had a pretty normal week of getting used to being back at school and handling the hospital routine. I would say that Taylor has been more tired than usual but Jordan seems more tired than usual due to getting up early everyday. Truth be told....me too!

We got word this week that the film "Taylor's Story" which is a documentary short film done last November about Taylor's cancer is going on to National Competition in October in Springfield. The film was chosen among 300 short films made in Florida in February and placed third in the novice competition at the Miami Film Festival. We don't get any money or anything but the fact that a film is getting circulated about childhood cancer is enough reward. The film basically started out as a way for our family to thank our church and community for all they have done for us and it turned into this great project. Anyway I believe that this is another miracle God is using to reach people as it started off as a little idea for us to express our gratitude and God has turned it into more as he always does.

Taylor is due for chemo again next week so please pray for it to go as smoothly as it can as she hates being admitted to the hospital. Please pray for Taylor's healing miracle and all families battling cancer.

Tuesday, August 9, 2005 7:43 AM CDT

Taylor has had a pretty good week since getting chemo last Monday and Tuesday. She started school on Thursday and was so excited about it. She told me she was ready to go back to school and even that she was ready for homework.....? Is this the Taylor I know???? She did really well the first two days and stayed all day. Yesterday I picked her up from school a little early to take her to the hospital for counts. We visited our friend Jacob upstairs and when we went back downstairs we were advised that her platelets were a whopping "11". Normal is 150 - 450,000. Needless to say she got platelets yesterday and her counts were all pretty low. However, she was off to school again this morning with a big smile on her face. She just amazes me.

Jordan is adjusting to fifth grade as well and she got a 100 on her math multiplication review test in 3 minutes. I think they have 3 minutes to do 100 problems and she was the only one that got a 100 in her class. She was so proud of herself and it gave her a big morale boost.

Some moms put together a fundraiser for Taylor's medical trust fund this past weekend. They donated 10 percent of the proceeds from pizza and a consignment shop sales for a day. They had a little fashion show in the restaurant and all the kids that modeled were so cute. We are so very appreciative and greatful as we have never asked anyone to do anything for us, but they continue to do everything. We are so fortunate and blessed to live in such a great community. Thank you everyone! It is really amazing as Taylor is approaching two years since diagnosis next month. Most the time when a person has a chronic condition, support tends to fade away as everyone has their own lives, but we continually receive support for our family. Not only with donating to the medical trust fund, but in their caring and love.

The picture this week is of the girl's in Central Park a few weeks ago. Jordan is such a "girly girl". She had worn some sandles that were hurting her feet that day and we had gone back to the hotel for a little while to rest prior to going across the street to Central Park. I told Jordan to change her shoes to something more comfortable and I didn't notice until we were walking a little while that she changed into highheels. I have her on video camera barely able to walk to catch a horse carriage ride around the park. It is pretty funny as she is just carrying on about if we don't get a ride soon she is just going to "get mad". I guess you had to be there, but it was just so funny. I told her and she agreed that it is hard work being beautiful. "Check out her walking shoes".

Please continue to pray for Taylor's healing miracle and all families battling cancer.

Wednesday, August 3, 2005 7:34 AM CDT

Sorry I haven't updated in a few weeks but we actually got to go on vacation last week. We had an absolutely wonderful time in New York. We have always wanted to go there but let me tell you when you have never been there and you see everything you see on TV it is overwhelming to see it in person. I added a few photos from the trip on the website.

We did all the tourist things including a Yankees game, Empire State Building, Statue of Liberty, Grand Central Station, Central Park, Ground Zero and St. Paul's church which is right across the street from ground zero and even some back alleys to buy some knock off coach purses!

I think the funniest thing is that when we first got there and we had to hail our first cab there we all stood around and looked at each other and said, well we need to get a cab and we said yep we do....we all stood around and looked at each other for a few minutes until Cary got the first cab. I had been to Chicago a few times, but my girlfriend always hailed the cabs for us so it is such a wierd thing to do when your not used to it. By the end of the trip the girls were giving the cabbys the instructions on where to take us. Most people walk everywhere but we pretty much caught cabs because we didn't want Taylor to get too tired. She did not want to take her wheelchair, which we use when we do alot of walking. It's probably a good thing because it would have been very difficult to get the chair in and out of the cab. She insisted on not taking it which was great as it meant she was feeling good.

One of the wonderful things we did was the girls got on the MTV show "TRL". I had no idea what this was until we got there but apparently it is the "it" show on MTV. I can tell we are getting old....I haven't watched MTV in years. The girls got to be in the studio audience but they were too young to be on camera. We watched the show from the "Pantry"...the hip word for "breakroom"...hahaha There were other parents in there as the oldest you can be on the show is 23. One of the parents said she was afraid her son would not get on because he was too young because they asked, but apparently they were directing the question to her as she was too old to be on the show. Wow now that makes you feel old. Anyway it was a great experience as we got to see them rehearsing prior to the show beginning on the monitor. Nick Cannon, from the movie "Drumline" was there that day along with the Click Five which is the newest boy band that seem to emulate the Beetles as they were all dressed in suits. One of the other moms in the "Pantry" said her daughters saw the Back Street Boys on the street the day before and this group opened for the Back Street Boys at Radio City the night before.

After the show we got to go on a special backstage tour and see where everything was done including the control room. I have always wondered how all of this works and it was amazing to see all the monitors and studios and people that go into making these shows. The girls got to sit in a photo booth where every major rock star and actor has been in. All the stars get their picture taken in this little photo booth and they have huge boards backstage that have all the pictures of all the stars that have sat in that little booth. Unfortunately, it was broken when we were there but I took a picture of the girls in the booth. It is just one of those little booths where you sit in it and act silly. We saw pictures of Madonna, Gwen Stafanni, Mike Myers, Adam Sandler, Johnny Depp, ect ect. While we were touring one of the DJ's was taping a show so we got to see him taping the MTV news..I think his name was Fav something. He had dread locks and a big "Bob Marley" hat on. We also go to go into the green room after the show and take pictures of the hosts of TRL and they were so nice and gratious. The girls got pictures with the Click Five and the hosts. Anyway the whole experience and the week was great.

We got back late Saturday night and Taylor went in for chemo on Monday and came home yesterday. She seems to be feeling ok so far just very tired. The girls start school tomorrow. I can't believe they are going into 5th grade. Their last year at elementary school...where does the time go?

Ok, one more thing about the trip. We went to see the broadway show "Wicked" which is told from the Wicked Witch's point of view from the Wizard of Oz. The show was absolutely wonderful. It is completely different from the Wizard of Oz but similar. One of the song's from the show is "one day in the beautiful city of Oz to make a lifetime of memories. That's how I felt while being in NYC to see all the things we saw to make a lifetime of memories. Another song was called "Defying Gravity". Which reminded me of the battle with cancer. Basically you are defying gravity to overcome the battle with cancer. I was crying through most of the show because it was just so beautiful and the Wizard of Oz was and has been my favorite show since I was a little girl. We didn't know what the show was about until someone suggested it. One of the things I believe God has used to get my attention is all the rainbows he has put in our lives because he knows that will get my attention. I can't tell you how many times I have been somewhere and "Somewhere over the Rainbow" begins to play. Many times when I was at my lowest fretting over Taylor's battle with cancer. I have seen two of the most beautiful full circle rainbows since Taylor has been diagnosed in my whole life which in both instances were God's way of saying I am here with you..I promise. My mom was reading a devotional one day on the trip and a rainbow reflected on her devotional page at exactly where she was sitting onto the page from the sunlight into the room. On the last day we were there we were at a Diner called "Ellen Stardust Diner" and the waiters and waitresses sing to you. As we were leaving one of the waitresses sang "Somewhere Over The Rainbow". I melted needless to say. God continually reminds me that he is ever present in all things and I am continally amazed at his grace through Taylor. I realized that Taylor is a child of God and we have the pleasure of being her parents on earth and seeing all the miracles that we have seen through her is truly unbelievable. I just thank God so much for everything he has done for Taylor and our family.

Please continue to pray for Taylor's healing miracle and all families battling childhood cancer.

Please pray for little Jacob and his family as they have gotten devastating news this week that Jake's disease is progressing despite treatment. We all live in the same neighborhood, go to the same church and treat at the same hospital. Cancer is a devastating disease and the most horrific thing you can go through as a parent of a child with cancer. Every room in the hospital has a marker board that shows the nurse and tech for the day. One of the techs always writes insprirational words on the board. This week the board in Taylor's room said.."What have my struggles taught me?" To strengthen my faith and perservere to be able to help others"
www.caringbridge.com/jacob/fl

God Bless, Mary Kay

Friday, July 22, 2005 9:27 PM CDT

On Wednesday Taylor had a CT, MRI and bone scan. Scan days are very long days because Taylor can't eat until the CT has been done and it is very hard on her when she can't eat and it just breaks my heart when she is crying over and over "Why can't I eat?". Well on Wednesday we got there at 10:00 and they had her paperwork ready to go and we didn't have to wait for more than five minutes before they called us to get her bone scan injection. There were about a 100 people in the waiting area and they give you a pager so it's kind of like waiting for a table at a restaurant. We were paged immediately, which has never happened before. They took us upstairs immediately and gave Taylor her nuclear med injection for the bone scan. Then they mixed her contrast up for her and gave it to her for her CT. She drank it very fast and did not complain at all about it. (that is not normal) They got us right in for a CT and the guy who did the scan was a guy that Taylor likes so it made things go very smoothly. Then they immediately took us to MRI right after the CT. We were able to leave the hospital to go eat lunch and came back at 2:00 for her bone scan. Then we went back to the clinic to get her port deaccessed and low and behold the CT results had already come back. This has never happened before either. The nurse brought them to me and I asked if I wanted to read it and she said that she had read enough to tell me that the word improvement was on the scan.

I read the CT report and the radiologist was very thorough this time in his comparisons. In April the radiologist that had interpreted the results did not do the correct comparisons so they told us that the chemo was not working and that there was nothing else that could be done for Taylor. By the grace of God I kept reading the scans over and over and compared them to all the previous scans and pointed out to the doctors that the tumors were shrinking and they agreed so we all decided to try this chemo regimen that Taylor is currently on now. I was so happy to read that there has been no progression of the disease and that the radiologist stated that although there are numerous lung mets (spots in the lungs), that they are diminishing and that the main tumor on the iliac area is stable and in fact it had diminished by about another centimeter in each dimension. The report said that from February to April the tumors were enlarging but now they are all diminishing since getting this chemo regimen. The word improvement was listed several times on the report. I was so relieved and so happy to be able to leave the hospital getting some good news and not having to wait for the dreaded scan results call, although we still did not know the results of the bone scan or MRI at least I knew that the disease had not spread to any organs.

Fortunately both reports came back stable as well and no new growth to report. This is the best news we could have gotten at this point as once a Ewing's patient relapses, they typically don't respond to chemo as the Ewing's cells are just immortal and figure out a way to outsmart all the chemo drugs to survive. This disease is very aggressive and it is being very stubborn, but the fact that all the areas are stable and the lung mets are diminishing as well as the main tumor is a wonderful sign. We will enjoy this time to the full extent as we know that at any time this can change.

I just want to thank everyone for their prayers and concerns as I truly believe that due to all the prayers things went smoother than they have ever gone and the fact that we finally have gotten some good news is a miracle. In fact all the doctors have told us that Taylor would pretty much need a miracle at the point we were at. Well we got it! Thank you God as I know that you are in control of this situation.

Taylor has had a really good week and felt very well. The girls were able to go to Vacation Bible School this week and it was so great watching them tonight as they put on a program at church and to see Taylor singing and dancing was just the greatest blessing we could ask for. Just watching her is a miracle. Please continue to pray for Taylor's healing miracle.

Monday, July 18, 2005 7:31 PM CDT

Taylor has been struggling since getting chemo last week. When we came home last Tuesday she slept most of the day and on Wednesday and Thursday she only got up to eat and slept the rest of the time. She started feeling better by Friday and seemed more like herself.

On Sunday Jordan came home so Taylor was exceptionally happy. It was so good to hear them laughing last night as they were playing and messing around. It has been pretty quiet with just Taylor around and it was great to hear the girls laughing together again after 3 weeks of being apart.

This morning we had to take Taylor in bright and early for labs and a hearing test. We actually made it to the hospital at 7:55 a.m. I think that was a record for us for the summer. Taylor got sick on the way to the hospital so the day started off a little rough. She passed her hearing test with flying colors. Some of the chemo drugs she has been on can cause hearing loss so that was good that her hearing is still good. Taylor's platelets had dropped from 177 last Monday to 24 today so they gave her a platelet transfusion today. She is not feeling too good tonight. I definately see a big change since getting this chemo regimen a second time. Her little body is just tired of trying to recover all the time.

We would like to ask for extra prayers this week as Taylor has a CT, MRI and bone scan on Wednesday. It will be a very long day and we are very nervous as we are running out of options so we are praying that she is responding to the chemo. Please pray for strength and comfort to handle what this week may bring for Taylor and our family. I don't know how to describe how scary it is to go through this. I get sick to my stomach when the phone rings and I see it is the hospital calling. Please pray for a healing miracle for Taylor and guidance and peace for our family during this uncertain time.

My favorite Bible verse that I repeat to myself 50 times a day is Proverbs 3:5-6

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

Wednesday, July 13, 2005 8:45 AM CDT

Taylor made it through chemo on Monday and Tuesday pretty well. I thought the day was going to be difficult as they have to poke her finger first to check her labs to make sure her counts would be high enough for chemo before they will admit her for chemo. The lab tech poked her finger and her blood clotted before she could get enough blood in the tubes so she had to poke another finger and we had to start over again. Then the nurse came in a little while later and told us that they did not get enough blood to run a CBC on her so they had to poke her finger a third time. Taylor had so many bandaides on her fingers that she looked like ET. Taylor handled it pretty well though...she didn't get mad....I was amazed. A few hours later the nurse advised us that Taylor's counts were good and that we would be admitted for chemo. Taylor started crying those big alligator tears and saying she was not going to do this anymore and I can't make her. My heart melted and I just tried to comfort her. She pulled the curtain around her in the clinic hoping no one could find her. I understand how she feels....I made a snack machine run and by the time I got back she was ok. When we got upstairs she actually asked to get her benadryl so she could sleep through the chemo. Again....I was amazed as she usually hates getting benadryl. After we got started things went very smoothly and Taylor didn't cry or get upset the whole time. I was very proud of her especially since she didn't have Jordan around to comfort her. Only 4 more days until Jordan comes home! Yeah!!!

Taylor will be having scans on the 20th so please pray that the tumors are stable or better yet gone! Scan time is always a very stressful time for us and Taylor so please pray for comfort and strength through this uncertain time.

Saturday, July 9, 2005 5:12 PM CDT

Taylor has had a wonderful couple of weeks. Two weeks ago she attended day camp at the Children's Cancer Center everyday and she had a wonderful time. The picture this week is of Taylor and some of her friends at the Cancer Center with their faces painted on the last day of camp. (Taylor is the one with the big butterfly painted on her face) They had an awards ceremony last Friday night and Taylor won the award "Queen of Kite Camp". She was very excited...of course we already know she is a queen everyday, but now she has an award that actually names her a queen. Believe me she lives up to the title. They were able to do all kinds of things and Taylor felt pretty good so that was a blessing.

Last Saturday Taylor left for Boggy Creek which is a camp in Eustis, FL for kids with illnesses sponsored by the American Cancer Society. They have a very busy schedule with activities from 7:00 a.m. until 9:00 p.m. at night and Taylor had a wonderful time. One of the things they do is silly olympics which starts off by eating spaghetti without silverware or hands. We picked her up yesterday after a week at camp. She was so happy and talked non-stop all the way home telling us about all of her fun times. The camp is such a beautiful camp and all the counselors are cancer survivors or have had some type of serious illness so they understand the significance of the kids having a good time. We are so fortunate to live in an area that has so many wonderful things to offer the kids and families with cancer. Taylor slept in until about 11:00 a.m. today as she has been going nonstop for 2 weeks.

Unfortunately, we have to go to the hospital on Monday for a chemo admission. Hopefully we will just be there 24 hours and come home on Tuesday. It has been very nice to get a break from the hospital routine. Taylor is due for scans the week of the 18th. I don't know what days yet but I'm am sure we will find out on Monday. I just hate scans and so does Taylor. We are very afraid to have scans done for fear of the disease progressing. As long as you are doing chemo, you start to feel almost normal as you feel like you are doing something to stop it. If the disease is progressing, they will most likely stop the chemo that she has been getting and let the disease run it's course,which is not good.

Taylor has seemed to feel really well, but I am still concerned about an area just under her left lung. Although the doctor looked at it a few weeks ago and said it was probably substaneous tissue, I don't think it looks right. As a mother you know your child and the left side looks different from the right side. I will have them look at it again on Monday and they may do a CT of the chest why we are inpatient if they think it looks questionable as I mentioned this prior to Taylor going to camp. I feel very helpless at times and sometimes I don't want to find out what the scans say because it can dictate your whole world if you let it. I really struggled with not taking her in to have a CT of the chest a few weeks ago but they already told us they would not do any kind of surgery to remove any tumor because she has relapsed and that no surgeon would do surgery at this stage in her disease. I know that the point we are at now is that we need to let Taylor enjoy every moment she can and going to these camps the past two weeks have been just awesome for Taylor. We will never give up and never loose sight of a miracle for Taylor. It is just very hard at times as I talked to another doctor last week through the NCI, National Cancer Institute to check to see if there are any clinical trials or anything different being done for her disease and the answer was the same as every other doctor has told us which was no. They were suppose to call me back last week, but I have not heard anything which is frustrating.

Please continue to pray for Taylor's healing and miracle. Next week will be very hard on Taylor as she hates being in the hospital and Jordan is still in Oklahoma so it will be especially difficult for her without Jordan. Jordan usually goes with us during the summer and spends the night with us. The only good thing about this chemo regimen is that Taylor gets benadryl around the clock to prevent nausea and a reaction from the chemo so she sleeps through most of it. I keep asking them to give me some but they won't...hahahaha We have been very blessed in that Taylor has felt as well as she has and she woke up this morning with her beautiful smile which is what gets us through. She is such a miracle as I look back over the past almost 2 years of treatment. I can't believe we are approaching 2 years since she has been diagnosed. She has been through so much and overcome so many things. Taylor is such an inspiration and we love her and Jordan so much. Please pray that Taylor's tumors are stable and/or have responded to the chemo and that things will go smoothly over tHe next few weeks. Knock on wood!....

Monday, June 27, 2005 5:29 PM CDT

Taylor had a pretty good week last week. Taylor didn't need any blood products last week and she only had one day last week in which she really didn't feel good.

On Saturday we ran off to Orlando for the weekend to celebrate the girl's dad's birthday and to spend time together before both the girls are gone for a couple of weeks. We went to Dixie Stampede on Saturday. This is a theater type show that Dolly Parton owns in which they have lots of horses and all that entails. It reminded me of Oklahoma with all the horses and buffalo in the show since we are originally from Oklahoma. The girls absolutely loved it. On Sunday we went to Blizzard Beach water park in Orlando. It was very hot yesterday and I think they must have had 50,000 people there. They play Christmas music to give you the illusion that you are in the middle of winter. It was so funny to hear Frosty The SnowMan playing while you are melting from the heat. Frosty would have definately kicked the bucket if he had been there. We went through a bottle of sunscreen and tried to keep Taylor out of the sun as much as possible. I watched 4 kids fall flat on their faces throughout the day as well as the lifeguards pull out four people from the wave pool during the day because it was so crowded. I was so thankful we got out of there alive. hahaha

On one activity the kids grap a "T" bar and glide through the air into the water....kind of like batman gliding on a wire between buildings. I watched a little girl fall wrong and the lifeguard had to jump in and save her. Taylor was the very next child to go and I was standing there on the opposite side of the pool about to have a heart attack after watching that little girl land wrong. I watched Taylor put on her goggles as if she was about to take off, getting ready to go next. She had no fear and took off as I watched helplessly. She was too far away from me to tell her not to go at that point. Fortunately she let go right before the "T" bar hit the pole in which the force would have made her let go. It reminded me again of how helpless I am as a parent of a child with cancer. I can stand back and watch and hope that she lands ok, but ultimately I can't control the end result. I hate that feeling more than anything. I have to remind myself that God is in control and keeping Taylor in his hands. On the way home, Taylor said that this past weekend was the best weekend of her life. (that's when you know that running up the charge card for the weekend is ok)...you parents know what I am talking about. Taylor is so amazing to watch as you see everyone staring at her because she has no hair and I want to scream...quit staring at my daughter... but I don't. The great thing is that Taylor doesn't see herself as being different so we don't either. I know people stare out of curiosity, but it gets to you sometimes.

Jordan left today to go to Oklahoma for 3 weeks. Taylor is staying here because she has Kite Camp this week at the Children's Cancer Center and she leaves on Saturday to go to Boggy Creek Camp for a week which is about three hours north of Tampa. I'm already missing Jordan so much and don't know what I will do without them both next week. This will be the first time we haven't been with them on the Fourth of July. I have a million things to do around the house and we will take advantage of the downtime, but I still hate being without them.

Taylor's chemo has been delayed so she could go to Boggy Creek Camp. The doctor's didn't want her to get chemo on Thursday and leave for camp on Saturday because I would have to go get her if she would need a transfusion and they want her to feel good at camp. I am glad but also scared as we will be pushing almost five weeks by the time she gets her next round on July 11th. We just have to trust God again in this situation.

After Kite Camp today, I had to run Taylor by the hospital for lab checks. She actually asked to poke her own finger and they let her do it. The nurse was so great with her and Taylor was so proud of herself. It gives her a little more control of things. She has also asked if she can give herself her own GCSF injections which boost her white count. The nurse said that she should be ok to do this as kids with diabetes do this all the time. So I guess that is our next thing to try. Taylor just amazes me with her courage and fearless attitude.

Please continue to pray for Taylor's healing and treatment. Taylor is due for scans after this next round so please pray that the tumors are stable and/or gone. Taylor's disease is very aggressive and we have been told that her chances of remission are very slim after a relapse, but we will never give up and always Fully Rely on God....FROG!

Friday, June 17, 2005 4:44 PM CDT

Taylor has had another pretty good week. She has tolerated the new chemo regimen she had last week well without any fevers or sickness. I had expected her to feel worse because she got three drugs last week and I was told it was more toxic than the previous regimen. Surprisingly, she has felt pretty good although her counts are in the toilet. We went to the hospital on Wednesday and again today because her platelets were on their way down but not low enough on Wednesday to get transfused. Today her platelets were too low so she had a transfusion. Her hemoglobin is pretty low too, but not low enough for a transfusion yet. So back to the hospital again on Monday to get rechecked.

We are having a good summer despite working around chemo and hospital trips. Taylor is supposed to go to ROCK camp on July 2nd for a week and we are trying to work around chemo for that as well. ROCK camp is sponsored by the American Cancer Society and she just loved it last year. She made great friends and some of her friends from here are going this year, so she is very excited. She is technically due for the next round of chemo on June 30 so we are trying to figure out if she will get chemo 2 days before she leaves for camp which is about 3 hours away. They have doctors and nurses at camp. but I want her to feel good and have a great time. If she would need a transfusion, I would have to go and get her as they don't have a blood bank on site. Darn... They have everything else though and it is a beautiful camp. I'm sure it will all work out. I told the nurse today that we need to try and somehow work around it. They are willing to postpone chemo, but then we are looking at almost 5 weeks by the time she gets back from camp and postponing chemo makes it less effective. I know it will all work out somehow.

Taylor will be due for scans after this next round of chemo and I am already terrified to have scans as I am afraid to find out that it is not working. It's just one of those things I think every parent of a child with cancer feels. It's not a negative thing it's just part of it. I don't even know how I'm going to be able to sit in on the bone scan, as after seeing so many I can tell immediately if there is something there that is not suppose to be there. Anyway I guess I have heard too many discouraging things lately with other families and I know Taylor is fighting an uphill battle with this disease.

Please continue to pray for Taylor's healing and please pray for all families battling cancer. I meet so many families and I see so many people hurting and struggling with every aspect of these diseases from the disease itself, financial issues, marriage issues, insurance issues, sibling issues and work issues. Each time I feel we are having a really rough time, we always meet someone else who is struggling more and it makes you realize that you have to make the best of things in every circumstance of life. Just continue to pray, pray, pray for healing for Taylor and all families battling cancer.

Friday, June 10, 2005 4:53 PM CDT

We have had a busy "hospital week" this week. On Monday we went in for counts and to have Taylor's kidney function checked as well as have the doctor look at a lump I noticed on just below her left lung. Taylor's kidney function was good and the doctor doesn't think there is anything there except for some swollen tissue from either the Gemcitabine or Decadron.

We went in yesterday for inpatient chemo. I had been dreading this day for 3 weeks. The first hurdle was that we were told Taylor had to have both ports accessed which we have not had to do since September. I was really worried about it, but fortunately one of her favorite nurses got her accessed with great care. Taylor started crying and I lost it thinking that this was not the right thing to do, meaning inpatient chemo. Taylor had such big tears and I watched them hit the ground as I tried to comfort her. After talking to the doctor again, I felt a little better. Then I learned that one of the drugs required Taylor to get Decadron and Benadryl around the clock while the 24 hour drug was running. Taylor hates benadryl because she hates that groggy feeling. Once we got upstairs for chemo we were then told that she didn't need both ports accessed. (great!) Then someone showed up to do an EKG....another great event that Taylor fought kicking and screaming. Then we were told that she was going to have to go downstairs to get a hearing test while the chemo was running....Taylor got even more angry about that. I told them it was just too much right now and that we would come back and do it outpatient. Then someone else knocked on our door to do an Echo....oh wonderful more fun. Taylor got more angry but I convinced her to do it to make sure her heart was functioning well.

Needless to say after all that was over she calmed down and things went smoothly and we actually came home when we were told we should be able to...now that's a miracle. Taylor seemed to tolerate the drugs well....so far. Hopefully she won't get a fever and we will be able to stay out of the hospital until the next round.

I read an article today in the paper about a young man who passed away from Ewing's Sarcoma this week which is so scary, sad and discouraging. Although we didn't know him since he treated at a different hospital here, it touched us deeply as you don't read about alot of Ewing's patients since it is so rare. Please continue to pray for Taylor and all families fighting this battle. God Bless

Saturday, June 4, 2005 12:43 AM CDT

Yea! the kids are out of school. Unfortunately, we had to go to the hospital on the last day of school for chemo on May 26th, but Taylor didn't seem to mind since her sister Jordan was able to go with us. Jordan is such a source of strength for Taylor and it makes things a lot easier for Taylor.

Taylor has done well since receiving chemo and has felt pretty good. Taylor is due to start the new protocol this Thursday the 9th. Unfortunately, the new protocol is inpatient. Hopefully we won't be in more than 2 days as the chemo regimen is one day, but one of the drugs runs 24 hours straight. I am having alot of second thoughts about doing this chemo regimen after reading the consent form one too many times. All the possible side affects are really scary as is every chemo protocol consent form. I asked for a creatine clearance to check Taylor's kidney function as she has not had one done in many months and I am very concerned about it since one of the drugs she has been on can cause decreased kidney function. She is going to be continuing on this drug (Gemcitabine). She has had some kidney issues on this drug, but a day of fluids corrected the problem. The Gemcitabine can cause fluid build up and/or decreased kidney function. They are also adding carboplatin which tends to more toxic to the kidneys. Taylor's chest cavity seems very bloated and/or distended looking since she has been on Gemcitabine. It can cause fluid build up in the tissues, but she has been taking a steroid to combat the fluid build up. It could be caused from the steroid, although she does not take the steroid all the time, only when she starts the chemo regimen. She is tired of me looking at her diaphragm everyday, so we are just going to have her kidney function tested as well as have the doctors look at her on Monday when we go in for count checks.

We went to see a great movie last night "The Sisterhood of the Traveling Pants". A total chick flick...in fact there was only one guy in the whole theater last night. I was afraid to go see it only because I was advised there is one part in the movie where a 12 year old girl passes away from leukemia. (I was really afraid I might start crying and not be able to stop). The girls really wanted to go see it and I mentioned to them that I had heard that was in the movie. One of the girl's friends had come over last night who is a cancer survivor as well. They all looked at me and said...it doesn't bother us. They all said it totally fearless and looked at me like I was crazy. It really made me think about alot of things. The movie was absolutely wonderful and it was from a teenage girl's perspective. It really moved me and reaffirmed that we all need to focus on the important things in life and not sweat the small stuff. I had really been struggling lately with feeling down and trying to remember what Taylor looked like with hair. ect. ect. It is so easy to focus on all the things that are not really important and loose the joy of the moment. After the movie, I was actually greatful that I went to go see it with the girls and that there is a movie out there that actually had that situation in it. I can't remember....if ever....I saw a movie that had a part in it about childhood cancer. That wasn't the focus of the movie, but it shows that at least it's being put out there for people to think about. I did go through a box of tissues though.

Please continue to pray for Taylor's healing and guidance in her treatment. Pray that if Taylor's counts qualify for chemo, it will go smoothly.

Hopefully the "Force Will Be With Us" in that we will not be in the hospital for more than 2 days for chemo! Send Darth Vadar in if we don't get released on schedule...hahahaha

Tuesday, May 24, 2005 12:26 AM CDT

Taylor had another good week last week. Taylor was suppose to have gotten chemo last Thursday, but her counts did not qualify. I must say I was relieved, as I didn't sleep the night before worrying about Taylor getting chemo again last week since she had just gotten out of the hospital with fever. I just hated to see her go back down hill again after spending the previous weekend in the hospital. These are the times I know that God is intervening. The night before I was to take Taylor in for chemo I just didn't think I had it in me to take her to the hospital again for another day of treatment. I just am so tired of doing this every week for almost two years. It's not that I mind taking her, it's just the emotional stress of watching her get her port accessed and getting more "poison" to kill the cancer and watching her go through all that chemo entails. When she got her port accessed the week before in the hospital, it didn't go in easily and she was screaming and it was all I could do not to pick her up and run out of there. I lost it in front of Taylor and the nurse which is not typical. I can usually keep it together until I have a moment alone, but I think it has taken it's toll after watching this so many times. I have wished so many times I could trade places with her, but I can't. It was a much needed mental break for all of us and we enjoyed our weekend.

We went to Cypress Gardens last weekend as Jordan was scheduled to perform with her twirling group there. Since Taylor had not gotten chemo, she felt pretty good even though it must have been 150 degrees outside. I remember why we typically do not go to the parks from May to November now. There were not any water rides to cool off on or any spray mists like Disney or Universal have, but we had a good time anyway. Just pour a cup of water on your head and you'll feel better!

The greatest thing this week was that Taylor and Jordan's school had a 2nd annual "Jump For Taylor" fundraiser for Taylor's medical trust fund. In February 2004 the school raised $15,000 for Taylor's medical trust fund just by the kids pledging to jump for Taylor. That has been among one of the most wonderful things this community has done for us. The trust fund has paid numerous co-pays for us. Every time Taylor is admitted we have a $250 co-pay and last year she had 14 admissions so you can see how fast that can add up. We also have a copay everytime we go in for chemo and see the doctors as well as co-pays for diagnostic tests and procedures our insurance will not pay for. Last year when both of us were not working, we had to put Taylor on COBRA and if we had not had the trust fund, we have no idea how the premiums would have been paid to keep Taylor insured.

Everyone at the school has been such a great source of support to Taylor and Jordan and our family. Yesterday they had the 2nd annual "Jump for Taylor" and raised $11,100! This was done with 350 less students than last year due to a second elementary school being opened this year in our neighborhood. We are so grateful and overwhelmed again by all the wonderful people in this community and all the wonderful students, teachers and staff at the girl's school. That's a total of $26,100 that has been raised for Taylor's medical trust fund by the school alone. We don't even know how to begin to say thank you for something as wonderful as this. I don't think words can express such a wonderful gift, but thank you everyone for your continued support of Taylor and our family. This is truly an amazing community and wonderful school and we are so blessed to live here. It is truly amazing after almost two years that everyone continues to help. Hopefully the money can somehow help us get Taylor closer to a cure.

I talked to Johns Hopkins hospital last week, but the doctor there didn't have anything different to offer Taylor. Taylor is scheduled for chemo again on Thursday and then she is scheduled to start another new protocol in about 3 weeks or as soon as she recovers from this week's chemo.

Pictured above are some of the staff members at the girl's school along with Grammy in red and mom in the teal blue with Taylor.

Please continue to pray for Taylor's miracle healing and guidance in her treatment. Thank you everyone for your prayers and support of Taylor and our family. Thank you God for your presence in our lives and the lives of others that have been touched through Taylor's illness.

Monday, May 16, 2005 1:03 PM CDT

Well we spent a luxurious weekend at hotel St. Joseph's this past weekend. Unfortunately, Taylor started feeling bad late Friday afternoon and started running a fever so we had to go to the hospital.

I was afraid that she might run a fever because she got Gemcitabine on Thursday and she probably still had VP-16 in her system, although we stopped it two days prior to her getting the Gemcitabine. One of the side affects from Gemcitabine is fever so who knows if it was one drug or another. After getting five huge bags of fluid this weekend, we were able to come home today as all her cultures were negative so no bacteria or fungal infections. She is feeling much better and herself again. She is supposed to get another round on Thursday so I hope it doesn't make her feel as bad this week.

I forgot how long those days are in the hospital and at night it becomes "The Hall of Screams". I just hate hearing all the kids scream throughout the night as they always check labs at night as well as doing other procedures. There are always babies in there and it is all I can do not to go in and pick them up and rock them as many of them are left alone at night. Needless to say, I haven't really slept since Friday. As soon as I pulled in the driveway the school called and Jordan is sick so I had to get miss Jordan. Hopefully we can get them both feeling better soon.

Continue to pray for Taylor's healing and guidance in her treatment.

Thursday, May 12, 2005 8:17 PM CDT

Round and round we go where we stop nobody knows.....I guess that’s how to describe this week. Taylor has had another good week. She continues to feel well and be happy everyday.

Each night I would lay awake and think there must be something we are missing or something different we can do. I think the hardest thing to hear is that there is nothing more that can be done for your child. It is excruciating just sitting and waiting for what the doctors tell you is the inevitable. Each night I go into Taylor's room at least three times during the night because I am so afraid something will happen in the middle of the night.

As each day passed by without anything happening, I decided this is just crazy. How can they tell us she is not responding in lieu of how she is acting. She is not having any pain. fevers or anything that resembles her disease progressing. Believe me we have seen the disease at work, so we know how she acts when it is progressing.

I went back and read all her scans she has had since January. I compared every scan and every detail on the scans. I called the oncology clinic on Monday and pointed out that the radiologist did not compare Taylor's last scans to the most recent scans and that the tumor on the iliac bone had indeed shrunk. I asked them if they considered that a response since it had shrunk by a few centimeters in each dimension. The nurse told me she would bring it to the doctors attention and they would discuss it in their weekly Tuesday morning meeting. The doctor called me Tuesday afternoon and agreed with me that the radiologist had not interpreted the scans correctly. The doctor asked if we wanted Taylor to go back on the Gemcitabine and Docetaxel protocol. I advised if they felt this was a response, then yes.

I was very disturbed by Taylor's counts after being on VP-16 for a week. I felt it was basically doing nothing. Her platelets were up to 175. They haven't been that high since she had been off treatment for a month prior to relapse. The doctor told me to think about it and call back. In the cancer world you don't have alot of time to think about things since these diseases progress so fast. I called back and talked to the nurse and advised we would go back to the protocol we had been on. She apologized for the error although it was not her fault. She then told me that the doctors are going to look into everything they can for Taylor and possibly alternate another drug into the cocktail mix that has used for Ewing's relapse patients. The nurses will always level with you so I asked if the doctors really agree with me or are they just trying to please me. When you get to this point, the doctors leave all the decisions up to the parents. They will make suggestions, but ultimately the decisions are up to us. She said they definitely agreed with me that she was responding. I got the feeling from the conversation that they felt really bad and have retracted the "throw in the towel" mentality. At least that's what I got from the conversation. Needless to say we have a glimmer of hope in all of this. Not that we have ever lost sight of that, but I feel God is really trying to tell us something. I am still researching other hospitals to see if they would do anything any differently than what we are doing here as this experience has definitely shaken our confidence levels in our treating hospital. This isn't the first time we have felt this way or challenged them, but this is a very serious matter.

Thank you to everyone who came out last week and prayed for Taylor. It is always a great feeling when you are joined with others in prayer. The last time this was done was at church in January when the whole church joined hands and prayed for Taylor when we were about to have her bone marrow aspiration to see if Ewing's cells were in her marrow. Thankfully, the results were negative then and again we are reminded that God is working miracles in this little girls life. Continue to pray for Taylor's healing miracle and treatment plan. Pray for all families battling cancer.

Friday, May 6, 2005 10:46 AM CDT

Taylor has had another good week; despite the news we received last week that her disease is not responding to chemo at this time. Taylor started taking oral VP-16 or Etoposide on Tuesday. She takes it everyday without a break unless her counts become too low.

Amazingly, she has been in great spirits and without pain or any complaints. She went to school everyday this week with the exception of Monday which is amazing. I watched her help Jordan on Monday with her homework which is also amazing. This girl has had over a dozen different chemo drugs which all affect the body in all kinds of ways including brain function. She continues to be witty, sharp, happy and smiling everyday. I have been completely baffled (as always) that they keep telling us that the disease is progressing. If it is progressing, then why is she functioning so normally. (can you say Divine Intervention) When she was relapsing I could see it happening, but every since she started back on chemo she seems to be responding.

On Monday I reluctantly asked for a copy of the MRI of the spine. It showed a 10mm growth on L5 on the spine. The last MRI said there was recurrent disease at L3 and L4 but this time no disease there, only post radiation changes. We hadn't had a MRI since January so who knows if it had been larger or smaller since then or if it is disease or not. Everytime we get scans, a different radiologist interprets them so it is very hard to find any consistency. I asked if we should radiate L5 as I was concerned if it keeps growing that it would compress the spinal cord but I was told that that since it had already been radiated, more radiation could cause damage to the spinal cord. I feel we can't win for losing. Is is really disease? Who knows...?

The other thing the MRI showed is that the tumor on the iliac bone had shrunk another cm in each dimension since we got the results of the CT the week before. In March the tumor was 7.1 X 4.2 cm and now it is 5.5 x 3.7 cm. The week prior to the MRI it was 6.5 X 3.9. So is the disease really not responding?

We have really struggled this week with feeling helpless and that maybe we are not doing the right thing. What I mean is that we had an option of trying another type of heavy chemo but with the knowledge that the toxicity could be fatal and with no guarantee that it would work. She has had 20 months of chemo and 5 weeks of radiation. How much more can she take? We had to ask ourselves are we being selfish as parents in trying to hold on to her at the risk of losing her or do we allow her to live a joyful life out of the hospital. We have spent over 300 days in the hospital or at the hospital since diagnosis and Taylor hates the hospital and everything that goes along with it. It just breaks our heart to see her suffering and begging to go home. Since she is ten years old, (but acts 25) we have allowed her to express her thoughts on the matter and are trying to respect her wishes to the extent you can as a parent. She is the one who has to go through it all, so we feel we have to let her have a say in everything. She is so smart in that she takes her own vitals, draws her own blood, (with supervision of course) knows how to read all her blood results, does her own IV pushes, with the exception of chemo, understands her scans...need I say more.

We have consulted other hospitals but they all tell us the same thing. Her disease is so hard to treat...ect. ect. Our insurance company will not allow us to go to Sloan Kettering or MD Anderson. St Jude's won't take us since we have been treating. Shand's agreed with the physicians here. I have a call into Duke, but we just feel we get keeping a big stop sign thrown in front of us.

On a good note, Taylor is completely happy today. She is functioning at a positive level. God is truly at work here and we all still pray for a miracle and will never loose sight of that. After all, is it not a miracle that she is feeling so wonderful in spite of what the scans show.

We want to say thank you to everyone who continually check on us and support us. Thank you to our wonderful church family, community and all our friends at the Children's Cancer Center. The community is having a prayer vigil tonight for Taylor, Jacob and Sydney who are all fighting cancer in our community and are in need of a miracle. Through this tragedy we have met some of the most wonderful people and will be forever grateful.

The picture this week is of Taylor and "Flipper" at Discovery Cove from last Mother's Day. That was one of the best things we have ever done...better than Disney if you can believe it.

Continue to pray for Taylor's miracle and guidance in treatment. Pray for all families battling cancer and all mothers this Mother's Day who have lost their children to cancer this year.

P.S. I want to say it was great to see guestbook entries from people I went to high school with. I won't say how many years it has been but we all know....Pam I just love you to death...I know you passed the word. Thank you! Mary Kay

Thursday, April 28, 2005 7:39 PM CDT

This week has been another roller coaster ride. I can only describe the feeling as being on a roller coaster hearing the click, click, click as you go up the hill in anticipation, but you are not able to come back down to feel any relief. Taylor had a bone scan and CT on Monday and I always go in for all of the tests to be with her. As I watched the computer scan her body, my heart sank as I saw her pelvis area light up where the tumor is present. I began to cry as I have seen too many of these scans and know too much. The nuclear med tech tried to tell me you can't tell from looking at this screen, but I knew better. The lesion on the hip bone was slightly smaller, about 1 cm less in each dimension but it also mentioned hyperactivity in the growth plates.....all children's growth plates have activity in them as they are suppose to since they are growing so I don't really understand that interpretation on the scan. It also mentioned activity in the knees but who knows if that is disease or normal growth activity. The worst news so far was the CT of the lungs. Unfortunately nodules are spreading and growing so basically the cancer is not responding to the chemo. We don't have the MRI of the spine yet but, I'm afraid to even get the call.

My first response was are you sure this is Taylor as she has been really happy and fiesty. We thought for sure she was responding and so did the doctors because she hadn't had any pain or fevers and her limp went away. Again, the things showing up on the scans are not making sense in relation to how she is acting. This must be God's grace is all I can say.

We are not going to focus on this and basically we are going to enjoy the time we have together. We will try a new therapy next week that should keep Taylor out of the hospital as much as possible and keep praying for a miracle. I don't know how to tell the girls more bad news so please if you call or email us please do not mention this. We will find the words I'm sure in the next day or so.

Keep praying for Taylor's healing and guidance in the best plan for Taylor. Please continue to pray for all children fighting this battle as we are so saddened with the passing of Christine yesterday. She was one the children we had the pleasure to know and love. She was also in the fashion show a few weeks ago with Taylor to benefit the Pediatric Cancer Foundation. All I can say is these children deserve better and watching a child suffer with this disease is one of the most heart wrenching experiences a parent can have. It is especially heartbreaking when they go through so much and loose the battle. All the children we have met with cancer are some of the most beautiful, talented, and amazing kids I have ever seen.

Friday, April 22, 2005 9:05 AM CDT

Well we have made it through another hectic week. Taylor started having some complications last weekend so we had to go to the hospital on Monday. Fortunately after receiving fluids all day the problem seemed to correct itself. Whewwww another admission dodged. Taylor received chemo on Wednesday so we were there all day Wednesday too. She has felt pretty good so far but today is the last day of steroids so her counts will immediately be dropping and I anticipate her to be feeling pretty bad by Monday.

Her hemoglobin was only 8.1 on Wednesday so we are approaching blood transfusion times again. She hasn't had to get blood since September so here we go again. She will probably need platelets again on Monday as well.

Taylor is due for scans next week which this has been a known plan since we started this new regimen in February. I asked them not to schedule her for scans the Monday after chemo as she always feels really bad, but guess what the scans were scheduled for Monday. I had asked them to split them up into two days so Monday she is supposed to have the CT and bone scan. I was not too happy because she will be feeling so bad on Monday it will make things very difficult as she can't eat until after the CT and she has to be injected with nuclear dye for the bone scan. She will probably throw up the CT contrast as well and we have to be there at 8:00 as the CT scan is at 11:00 and bone scan is at 12:30. (It takes three hours for the nuclear med to go through her body and she has to drink the contrast 2 hours prior to the CT). I was very frustrated as I specifically asked them not to do this and was advised we could do it the next week. I didn't want to wait another week because technically these scans are suppose to direct us to the next step. I was then advised that if the chemo is working she would do this protocol for a year so if her scans are delayed they would go ahead and give her the next round week after next. Taylor was not very happy about that at all (neither was I) but I told her things can always change as they always do at any time. Frankly I would be thankful if the chemo is working so I can't really complain. I just feel so bad for Taylor as she is so tired of chemo and I guess she thought she might be done and get the summer off. She is so tired of not being able to ride a bike, run, jump, skate, or anything a normal kid does.

Long story short I guess we will go in on Monday and if she needs blood and/or platelets we will have to reschedule the CT and bone scan because blood takes about 3 hours to infuse and the past two times she has gotten platelets it took 2-3 hours. So there is no way we can do it all in one day. She is scheduled to have a MRI and PFT on Thursday and I was also informed she will have to have another EKG and Echo next week too. Next week will be a BEAR of a week I know. I also have a test on Monday night and Thursday night. (This of course is not the priority, but by gosh I'm going to finish...2 more weeks)

Please continue to pray for Taylor's recovery and that she is responding to the chemo and that we will be guided to the best possible plan for Taylor. Also pray for Taylor next week as these scans are very hard on her and she gets very anxious during these times.

Thursday, April 14, 2005 8:14 PM CDT

Sorry I haven't updated in a while, but things have been very crazy going to the hospital 2-3 days a week and going to school 4 nights a week. Trying to study at the hospital is like being in the middle of a three ring circus. Last week I just had to stop and laugh as a three year old is running all over the clinic unsupervised, a teenager is watching a talk show with every other word being bleeped out, (luckily Taylor had headphones on) one kid is going from bed to bed turning on video games, one kid is getting sick and here I am studying Microbiology and thinking...do I really want to work in the medical industry. hummmmm What was really amazing was all of those kids are getting chemo and are by themselves...???? It just amazes me that happens as I can't imagine Taylor going through any of this alone.

Anyway, Taylor has had a pretty good week this past week up until yesterday when she received more chemo. She became her sweet self again after being off steroids for about a week. Unfortunately, she has to go back on them on Monday for the next round of chemo which should be Wednesday. Once Taylor completes chemo next week, she will have completed three cycles of Gemcitabine and Docetaxal. She was scheduled to do three rounds of this regimen and then receive scans AGAIN.....Those scan days are soooooo long as she always has to have a CT, MRI, Bone scan and PFT. I asked them to please split it up into two days as it is just too hard on Taylor to try and do all this in one day.

We hope that Taylor is responding to this regimen as if she does not, I don't know that there is anything they can do. She seems to be responding, as she is no longer spiking fevers everyday or limping anymore so I would like to think that the tumor on the iliac bone and gluteus muscle are shrinking. We also hope that all the lung nodules are dissipating. We are getting really nervous again as you know that you are going to get some news in the next two weeks that will guide the next set of major decisions. Taylor was so amazing yesterday at the clinic. She was in such a good mood and talking to all the nurses and even the doctor. (This doesn't usually happen...she normally ignors everyone as if they are not there while we are in the hospital). She painted windows the whole time we were there with rainbows and flowers. Once the chemo was done though she felt pretty bad.

Last Friday we attended Relay for Life, which is a Relay for cancer research in which people pledge to walk around a track for 18 hours straight. Taylor was the honorary pediatric survivor and she got to ride around the track on a Harley to make a grand entrance. As I watched her ride away with some guy I didn't know, I thought to myself, that's my future....watching my daughters ride off with some guy I don't know. (I can only hope I will have to deal with that)hahaha I forgot my camera so I don't have a picture of it. She then walked around the track with all the other survivors which was very moving. She insisted in walking all the way around a high school track which was alot for her. She always amazes me with her incredible strength and courage. A classmate told me tonight that she saw our picture in the Brandon Times this past week so if any of you have this paper, please let me know as I couldn't locate it.

Please pray that Taylor is responding to this chemo regimen and that our scans will go smoothly and show great results the last week of April.

Wednesday, April 6, 2005 2:49 PM CDT

Well we have made it through another week. Things have been very challenging due to the chemo Taylor is receiving as well as the steroids Taylor is on. I am about at my breaking point. Everything is such a challenge everyday to get through the effects of steroids. Taylor had chemo again last week and she had to get platelets again this past Monday. She started running a fever while we were waiting on count checks on Monday. Needless to say things were very tense as I was sure it would keep going up but remarkably it did not. Her fever was 100 degrees even and if it goes to 100.5 we would be admitted. The nurse asked me if I wanted to start her on fluids and I said yes that would be great because that would help Taylor. Taylor got so mad at me and said "why don't you just put me up for adoption while your at it". This is the kind of things you have to deal with when a child is on steroids. It is very hard to keep your composure and realize that she has been through so much and it is the steroids talking. I feel like I'm in the exorcist movie sometimes. Sorry, a little cancer mom humor.

I think that the fluids definately helped as her temperature went down immediately once the fluids and platelets started to go in. Thank God her fever went down as she was suppose to be in a fashion show at Saks Fifth Avenue to benefit the Pediatric Cancer Foundation last night and that would have been devastating if she could not have made it.

All the girls were beautiful at the fashion show. Taylor was escorted down the runway with Brad Richards. In case everyone forgot, he was MVP in the NHL for the Tampa Bay Lightening last year. I hope we have a season next year. Apparently he flew in from Canada to be in the show. The picture I took was not very good of them coming down the runway, but needless to say I got it. It was a great thing to experience as they had professional models in it and all the photographers were there taking everyone's pictures as they came down the runway. It was something that we loved experiencing and all the girls that were in it besides the professional models are cancer survivors.

We have to go in tomorrow again for count checks. Taylor had felt pretty bad earlier this week but she is doing much better now. She is due for round three next week if she qualifies. They will rescan her after cycle three which will be in approximately 3 weeks to see if she is responding to the chemo.

Please continue to pray for Taylor's recovery and that she is responding to the chemo regimen.

Sunday, March 27, 2005 11:44 AM CST

Happy Easter Everyone!

Taylor has had a challenging week in that her hair all fell out over the past two days. She lost most of it yesterday and the rest of it this morning. I feel so bad for her as she was crying alot yesterday as it was falling out all over the place. It must be devastating to a 10 year old girl to loose her hair again after it taking over 6 months to get to the length it was. She still was not comfortable with taking her bandana off even after 6 months of growth. I was able to pick up a few more bandanas this week from radiation to add to our supply. Her bandanas are pretty faded after wearing them for over a year and a half. She will only wear the "Doo-Rags" which are very hard to come by. Almost all of her eyelashes fell out as well.

She had chemo again this past week and seemed to tolerate it pretty well except that it makes her very tired. The doctor questioned why I hadn't started her on radiation when we went in and I said that I was given the impression that is was only palliative and not curative so I had decided that we would hold off for now since she wasn't having any pain and it is terrorizing to her. If we had no choice it would not have been an option but everyone seemed to suggest it was just palliative. The oncologist wanted me to start radiation so I consulted the radiology oncologist again for more direction as I felt that I was getting conflicting advice. I also questioned that since her platelets dropped to 23,000 after one round of chemo I was concerned that radiation to the bone would additionally suppress her platelets. The radiology oncologist agreed that there was no way that she could even receive radiation with platelets that low. A normal person has 150,000 to 450,000 platelet count. The radiology oncologist agreed that it was ok to wait and see what happens with the tumors. The physicians are already concerned that she is not going to be able to recover on her own anyway and it has been suggested that if she doesn't get a rescue, meaning her sister's cells soon, she may be in danger of her platelets never recovering which would mean a lifetime of platelet transfussions. I guess they will wait until she can't recover to make that decision. This has been one thing I have never understood as to why we have to wait as there should not be any issues with Graft vs Host disease, meaning rejection, from an identical twin.

I also talked to the doctor at Shand's this week and they think Taylor could tolerate transplant but her current doctors do not. Everyone wants the best outcome so all opinions are valid it's just a very difficult decision to make as a parent as no matter what you do you are given the worst case scenario in both instances which is very disturbing because you feel if you don't do it you didn't give your child a chance but if you do go through with it and they don't survive you have contributed to it. There is no right or wrong answers in this situation. The main factor would be if the tumors respond to the chemo she is on so we can't make any decisions until that question is answered. Taylor will receive another round of chemo on Wednesday and she will get the two drugs again if her counts are ok which will be surprising if they are.

Please continue to pray for guidance and direction in Taylor's treatment. I believe all answers will be given as so far God has intervened in all the things we have done so far in her treatment.

Sunday, March 20, 2005 6:28 PM CST

Taylor has had a pretty good week this week. On Tuesday the 15th we went in to meet with the radiology oncologist. Taylor was not too happy about being there. She kept saying why are we here....I had pain one day and everyone is just freaking out. I tried to explain to her why we might have to consider radiation again, but trying to explain this to a child is really very hard. After talking to the radiology oncologist she did not feel that there was disease in Taylor's vertebra as the last two CT's have indicated. Nothing showed up on the PET scan which measures viability in February but the past two CT's have stated that she had lesions on the vertebra at L3 and L4. She said that because Taylor had radiation there before that it was most likely post radiation changes. I really don't know what to think to be honest. The radiology oncologist was pretty much leaving the decision up to us, as it would be palliative for pain management only and not really a cure.

We went to Shand's on Wednesday and we were really impressed with the physicians we met with. They had such a confident "can-do" attitude which was very refreshing. We were also given the "flip-side" version of things which is that Ewing's Sarcoma is a very difficult disease to treat; especially when a relapse has occurred. They are going to have a "tumor board meeting" tomorrow to review Taylor's scans and discuss what would be the best plan of action. The jest of things was that if we can get the tumor's to respond, we will have to do transplant to be able to have any chance of a cure. The down side is that they would have to radiate her lungs which are already compromised as it is in addition to transplant chemo. I asked alot of questions such as have they radiated and/or transplanted kids with compromised lungs before and they said they had. I didn't ask what the outcome was because I didn't have a chance, but that would be a further discussion to have once we decide what the plan will be.

Taylor is scheduled for chemo again this Tuesday. We are going to stick to her chemo regimen for now until we decide to do anything any different. The physician said that the regimen she is on is considered experimental, but people are responding to it that have had a relapse of Ewing's Sarcoma.

Taylor had to have two large units of platelets already last Tuesday. We were not anticipating her platelets dropping so quickly but I guess since she has had so much chemo it doesn't take a whole lot to deplete her platelets.

Taylor had her fitting on Saturday for the fashion show in April. She had a good time picking out the outfit she is going to wear. On Tuesday, in addition to chemo, we are suppose to go to a luncheon to see Derrick Brooks who plays for the Tampa Bay Buccaneers, and Mercedes Benz present a check to the Pediatric Cancer Foundation for the "Tackle for Kids" campaign that went on during football season. This was the campaign where Derrick Brooks and Mercedes would donate a certain amount of money to cancer research each time he would make a tackle. Taylor was on the billboard for this campaign as well as doing a commercial for it.

Taylor's cousins are here to visit for spring break and we went to the Pier today at St. Peterburg and the kids fed the pelicans. I took some photographs that are priceless of the kids doing this. Cousin Megan didn't participate as she didn't want to hold the fish to feed the pelicans. I don't blame her as the smell was terrible. It is so hard to see Taylor doing so well and think that we still have to go through chemo and possibly transplant. When she is doing this well, I almost forget temporarily that she does have cancer. I am very thankful that I can actually feel that way, even if it is for a brief moment.

Please continue to pray for Taylor's healing and guidance in her treatment.

Monday, March 14, 2005 6:10 PM CST

Taylor had a pretty good weekend. She felt very tired on Saturday but she was able to go to a birthday party and then she had a friend come over and spend the night on Saturday night. It really seemed to help her take her mind off things and she felt really good yesterday. Today she went to school for the first time in over a week. She was in a great mood when she got home from school. She only is going half days for now which is a miracle that she is going at all.

Her sister Jordan made student of the month for February at school. This is announced at school in the morning and I guess Taylor heard the announcement. When Jordan came home she was so proud to show off her certificate. I am sure it feels good to her to receive attention. When I took Jordan to baton practice, Taylor decided to throw a party for Jordan. Taylor insisted that Grammy take her to the store and they bought all kinds of party stuff and had the house decorated when we came home with congratulations banners, balloons, a cake and party music. It was so funny, when we were driving towards the house, we saw Taylor standing out in the driveway and I guess she saw us and ran back in the house. YES, SHE RAN BACK INTO THE HOUSE. A week ago she couldn't walk. Anyway Jordan was so surprised and she gave Taylor a great big hug and they told each other how much they loved each other. The girls were dancing and kicking the balloons around and having a great time.

Unfortunately, I had to break the news to Taylor that we had to go talk to the radiology oncologist tomorrow. I also had to tell her about going to Shand's on Wednesday. I just tell her what she needs to know and nothing more. She gets too upset and worried about things so I keep them simple. I called today to check on the CT and the tumors are still growing. They had grown significantly again in the past two weeks as well as multiple nodules in the lungs. The CT was not really to see if the chemo was working yet, it was for radiology to look at for possible radiation. The chemo probably has not had enough time to work yet. (I hope that's the case) Radiation is not a cure, but the rays would hit the tumors directly and hopefully kill the cells to give her relief from the pain of the tumors growing. Unfortunately, radiation is an evil of it's own. Sometimes it seems that the treatment is worse than the disease.

To see Taylor dancing around tonight and in such a great mood it just does not make sense to me that cancer is still growing in her body. I know that all the scans show that it is growing, but she felt so good tonight. I had to start giving her GCSF injections again to build up her white count which she hates. Tonight she asked me to go ahead and give her the injection. That never happens.

Continue to pray for Taylor's healing and that we will be guided in the direction we need to go to help Taylor the best we can as we decide whether or not to start radiation and/or possible transplant at Shand's. We can't pursue transplant unless Taylor has little or no disease present. Transplant does not "sweep out the garage" so it will not work if there is disease present. If we do radiation that complicates possible transplant as Taylor has already had radiation and you have to be careful with radiation and chemo.

Friday, March 11, 2005 7:54 AM CST

I just wanted to let everyone know that Taylor had much better days on Wednesday and Thursday. On Wednesday she slept most of the day. Probably due to the morphine and chemo effects. Yesterday she felt 150% better from Tuesday and didn't need any pain medicine. She took her last dose of steroids last night so I'm sure things will probably change. The steroids also help with inflammation and swelling so if the tumor was pressing on nerves that should have helped as well. She couldn't sleep last night so we were up from 12:00 a.m. until about 6:00 a.m. this morning before she finally was able to sleep. I think the steroids were keeping her up. She has to wake up soon to start drinking contrast for the CT today which is scheduled at noon. Today they are going to scan the abdomen, pelvis and chest area to see if things are getting worse. They will evaluate her CT prior to us meeting with the radiology physician on Tuesday. I am praying that somehow the tumor(s) are stable.

I just want to thank everyone from our church who gave us gift cards and delivered meals this week. Thank you so much Tracie P. for the wonderful pot roast. We are still eating it.

Thank you everyone for all the prayers and concern for Taylor. I firmly believe that all the prayers for her pain to be relieved worked. She wasn't even limping yesterday which was amazing. I know that it may be short term but you have to take everyday for what it is...good and bad.

I didn't get to mention how much fun Taylor had on Sunday. Someone picked us up in a luxurious mercedes and took us to Sacs for a makeover and nails. Well the car ride was exciting as Taylor almost barfed in the luxurious mercedes. I could just imagine that happening, but luckily we were able to pull over in time. She just cannot go without eating because her blood sugar seems to be dropping abnormally. Probably due to the effect of cancer cells draining her body. Anyway, we were greeted by several ladies and they opened the door for us to Sacs Fifth Avenue. We felt like royalty. We were escorted to the special area and Taylor and I received makeovers and then we went to the Elizabeth Arden salon to get our nails done. I have never had my nails done while in a lazyboy. I usually go to the cheapest place in town and you only get to sit as long as it takes before they rush you out.

There were about 10 girls there with their mothers. All the girls have and had have cancer. It was wonderful to see them all smiling and they took pictures of them all together. I tell you I was so moved just to see them all smiling and beautified. The girls ranged in ages 8 to 17. I have seen most of them at their worst so it was great to see them all so happy. Oh I forgot to mention that after the pictures and makeovers we were taken to the "Special Room" and Taylor was given some clothes and makeup and goodies. I also received some makeup and goodies. I love getting things like that.

Taylor is supposed to participate in a fashion show in April called "Fashion for the Cure". It is at Sacs as well. We hope she will be able to attend that. They bring in professional models as well as the girls to model clothes on a runway at Sacs. The girls will get to pick the outfits they model. I haven't talked about it to Taylor because I always wait until the last minute to tell her in case we can't attend things. She already knows about this event though. We will see how things work out.

Keep praying for Taylor's healing and recovery and that miracle we all are waiting for.

Tuesday, March 8, 2005 8:20 PM CST

I thought I better update Taylor's site while I can. I don't know how to start. Taylor had a very rough day today. She started having leg pain yesterday as well as a significant limp. She has slightly been limping but no one would probably notice except those closest to her. Yesterday however she could barely walk. I gave her Decadron which is a steroid yesterday which seemed to help. Last night about 8:30 she started having major pain in her right hip. She was crying and screaming "make it stop". I gave her some tylenol 3 and she was able to go to sleep. This morning we went to the hospital for our scheduled chemo. On the way there, the pain started again and she was screaming with the pain. I was so scared and traffic of course was terrible so it took me an hour and a half to get there. We finally got to the hospital and they started her on morphine. They were going to admit her to continually give her morphine for pain, but she cried and cried and begged me not to put her in the hospital. She thinks I alone can make that decision. She began to feel better after the morphine took affect. The doctor allowed me to take her home with a prescription of morphine for her to take orally. The doctor's realize how much she hates the hospital, so they are doing everything they can to keep her home.

Unfortunately, they think the pain is coming from the tumor growing and pressing on nerves. I already thought that last night. We are going to do another CT on Friday to see how bad it has progressed. I have never seen something take over a person so fast. That of course is characteristic of her disease which is why it is so fatal. We have an appointment on Tuesday to meet with the radiology doctor as we might have to start radiation again. Wednesday we are still scheduled to go to Shand's but I don't know what is going to happen at this point. We may be admitted at any time considering what is going on.

Please continue to pray for a miracle and that Taylor's disease will stop progressing and/or the pain will resolve. We aren't sure that is what is happening, but it is probably the case judging by the pain she is having and the inability to walk without significantly limping. The tumor is on the hip bone and muscle as well as several nodules in the lungs. They also suspect it is on the L3 and L4 vertebra again. Things don't look very good at this point.

Please continue to pray for Taylor's healing and our family. I talked to Pastor Rob recently about how I just don't understand children suffering and he said that is a hard question to answer but you do realize that Taylor is the face of God. That struck me so strong as I realized that Jesus suffered on this earth but he is living in everyone today.

My dad came by yesterday to visit us from Oklahoma and he had sent the girls his guitar back in October as they had expressed an interest in playing the guitar, especially Taylor. I hadn't had the chance to take her to lessons for one reason or another yet. Yesterday he showed her how to play some chords and she absolutely loved it. She played and played and tried to take it to the hospital today but I had too much to carry. Tonight she asked for it again and began playing it and playing it and playing it until she began to fall asleep with the guitar in her lap. That was pretty special to see her do this after having so much pain today. She said it helped her relax.

I haven't shared this because people might thing I'm crazy....which I am, but a week prior to Taylor's scans in January I was outside on a ladder pulling a huge tree limb out of one of our oak trees that had been there since all the hurricanes. I didn't know it was there until I got up on the very top of the ladder to pull off the moss from the tree. I wasn't thinking about anything except getting that tree limb out of the tree which was pretty big. I suddenly felt a presense behind me. I even stopped to look to see what was there on both sides of me. I knew that was the presense of God. This was a very strong sense that was unmistakenly there. I think back to that moment everyday as I know that he is carrying me through this even though I feel completely drained physically he is here with us spiritually.

Continue to pray for Taylor's healing.

Saturday, March 5, 2005 5:45 PM CST

Taylor is feeling better today than she was earlier in the week. After she got chemo on Tuesday I immediately saw a big change in her energy level. She was so tired and didn't have any energy to walk upstairs. Those are the times that I worry the most as you don't know if it's the disease progressing or the chemo working. As I watched her struggle, it is almost like watching something just suck the life out of her. You see this beautiful, happy girl turn into a very lethargic, tired child. She struggled this week with accepting that she has relapsed. We are all holding onto each and everyday the best we can.

Yesterday however she became herself again and seemed happy and energetic again. She was laughing and playing with Jordan again and it feels so good to see her like that. We are supposed to get makeovers, pedicures and manicures tomorrow thanks to the Pediatric Cancer Foundation and Mercedes so she is looking forward to that. We had some photographs made yesterday by a photographer who donated his services and I am looking forward to seeing them.

Taylor is going in on Tuesday for chemo again. She will get 2 drugs this time along with steroids to prevent edema in the lungs as these drugs can cause this. I think I have prepared everyone for the wrath of steroids. Thankfully she will only have to be on them for a few days. If you have ever had a kid on steroids you can relate. We are also going to go to Shand's in Gainesville on the 16th to get a second opinion and/or to discuss transplant if we get to that point.

Please continue to pray for Taylor and our family. I was so relieved when I went in last week and they had a protocol ready for me to sign rather than having to make a decision. I had prayed for direction and we got it. We had not really discussed the drugs prior to last week but several doctors around the country all agreed that the drugs were having the best response for relapse Ewing's patients. Thank you God.

Wednesday, March 2, 2005 7:08 AM CST

Taylor went in for chemo yesterday. She was so brave although she began to get upset when they were getting ready to access her port but only because she heard the pump beeping and she said she hated that sound and had hoped she would never have to hear it again. She seemed to tolerate the drug pretty well which was a 90 minute infusion of Gemcitabine. She will get it again next week along with a 60 minute infusion of Docetaxel.

She was so incredible Monday night as she wanted to tell Jordan the news. She seemed so adult like and was actually comforting Jordan. Needless to say, it broke my heart to see the hurt in both of their faces. These are the times that I don't know how to make it go away as no words can comfort them in this situation. We just continue to love them and comfort them the best we can. The hardest question that I can't answer is "why is this happening to me mommy". "why does God let this happen". Those are questions I can't answer although I try to explain that God works miracles through bad situations and he does not cause them. I explained that she and her sister have touched hundreds if not thousands of lives and I told her someday we will understand what we cannot see now.

Taylor insisted on taking FCAT yesterday and today. She continues to amaze me. I have never seen a more determined person. I think it has what has gotten her to this point. Hopefully Taylor will be able to stay out of the hospital for now as her chemo will be outpatient for the next 2-3 months but if she has complications we will have to go in.

Continue to pray for Taylor's healing and strength for our family.

Monday, February 28, 2005 2:33 PM CST

This weekend we had planned to stay home and get some things done but my 12 year old at heart husband insisted that we go to another theme park this weekend. Sooooo we took the girls to Universal since we already had passes we thought we would run away again before finding out the results of Taylor's biopsy. Taylor and Jordan had a wonderful time as well as everyone else.

Taylor received an oil anointing by a Bishop last Monday night and ever since then she has felt amazing well. She has been laughing with Jordan and playing and yesterday at the park the girls were running in between roller coasters as happy as they could be. Dad would not ride coasters prior to a few months ago but he has recently had a breakthrough and he can't get enough. Grammy is here for support and after we rode the "Dueling Dragons" roller coaster I looked over to make sure she was still with us....hahahahaha Anyway I was just so amazed at how well Taylor had been feeling since her biopsy last Wednesday. In fact by Wednesday night she was dancing around with Grammy. Now that is a miracle!

Today I took Taylor in for a pulmonary function test knowing that they would probably give me the results today of the biopsy. After I read the CT though there was no need to ask as it spoke for itself. Unfortunately, she has multiple pulmonary nodules and the one that was originally picked up in January has doubled in size in 2 weeks. The one on the hip is growing as well and is on the iliac bone as well as on the muscle. I talked to the doctor prior to talking to Taylor and I lost it but was able to compose myself to tell Taylor. I went in to get her and I had told the doctor and the social worker that she would be hysterical but when we told her she didn't cry or get upset or anything. We just told her that we were going to have to start chemo again and she didn't have any questions except was she going to loose her hair again. I could not believe it. She did cry a little when we got back to the car but I believe that God handled that situation. We are going back in tomorrow for chemo but we are going to start with outpatient chemo for the next 3 months and then they will rescan her. We will go in tomorrow and next week and then she will get a 2 week break. When we got home from the hospital she immediately was asking for Jordan and she grabbed her and hugged and kissed her. Believe me, my heart melted as it has done many times before. If Taylor has a response, we may still do a stem cell transplant but we won't know and it will be very questionable as her PFT was at about 70 percent today. She has had a cold since her ski trip but optimal lung function is of course 100 percent for transplant. Our prayer is still for continued healing, a miracle and that she will respond to the chemo. The oncologist had contacted several doctors around the country and we are going on a regimen that Sloan Kettering in NY would have used so we are going to stay here to treat for now.

Keep on praying and believing as I do believe that God is giving Taylor as well as our family incredible strength and grace.

Thursday, February 24, 2005 10:55 AM CST

Well we got through the biopsy yesterday. Yesterday was quite an experience. We had to be at the hospital at 7:30 for a CT of Taylor's neck, chest and abdomen. Then the biopsy was supposed to be at 11:00 but due to delays she didn't actually go to surgery until about 12:15. She was not able to eat so any parent knows that when this is the case things become even more untolerable for a child. She bought a Butterfinger bar at the gift shop and she held onto that candybar and kept asking me if she could eat it and I had to keep telling her no and she kept sniffing the candybar which she was laughting and crying at the same time.

She was then suppose to have an EKG and Echocardiogram when she came back into the recovery room before she was to wake up as she hates those because they have to expose her and she feels so violated. Well it was so funny when they were bringing her back in the nurse shouted to everyone on the day hospital "Taylor is coming, Taylor is coming...." in otherwords you better get ready for her because we all know how fiesty she is. The lady who did the ECHO came in and was doing it while she was still asleep and everyone was being loud outside the room and she was like "can you guys be quiet because if she wakes up she is going to be furious". WELLLLLL, she woke up and oh my gosh she became hysterical and began kicking and screaming and mad at me because I was her mother and I should have known not to do that because I was suppose to protect her...ect, ect. She then kicked the anesthesiologist and they had to sedate her again to finish the procedure. They told me she wouldn't remember it but OF COURSE when she woke up she remembered everything. She was so mad at me and I just let her get mad. She then had to go to the bathroom and they disconnected her and I picked her up to carry her to the bathroom and after she went to the bathroom it was like being hypnotized she forgot everything and said she was sorry and became herself again. She then said where am I and what happened. She then said "mommy why did you drop me in the toilet". I said honey I didn't and she said oh yes you did and I said ok your right but I'm sorry....I had to laugh. I know it's incredible that I can find humor in all of this but you have to or you will go crazy.

We should hear from the doctor by tomorrow or Monday what the results are. Until then I have felt incredibly "ok" because somehow GOD is carrying me through and uplifting me in the midst of the worst times. He keeps telling me "BELIEVE IN ME". Last night believe it or not we got home at 4:30 and I left to go to class at 4:45. My algebra teacher gave us a "take-home test" which I could not believe as in all the college courses I have had a teacher has never done that. I had been struggling with the section and he said he hadn't done that in four years but since he forgot to look at the syllabus he was giving us a take home test. GOD is even working with me with school at this point. He is awesome. Mary Kay

Monday, February 21, 2005 8:14 AM CST

Hello my friends,

Well these past few days have been extremely hard to get through. We went in to talk to the doctor Thursday and unfortunately they had not shared everything with us over the phone. The told us that there are several lung nodules now and that the area in the iliac bone or hip area has spread very fast. We were completely devestated and it was even harder as when you leave hearing this kind of news, you feel you have already lost your child by the way the news is delivered. It was most difficult since Taylor was gone on her ski trip as I couldn't see her for five days and it was a very uncomfortable feeling because you begin to imagine what it would be like without her.

However, I DO BELIEVE IN MIRACLES!!!! I try to attend a bible study once a week but since school has started I have only been able to go to two studies in this series. It is a Beth Moore study and if you know who she is you can't help but get fired up. The first study I made it to was on MIRACLES. I hadn't even read the study for the week so I had no idea what we would be talking about. In that week's study she had documented several cases of people who had cancer that were given no hope but the cancer completely disappeared by the grace of God. These were medically documentated cases in which no explanation could be found. Then I was able to go last Thursday and the first thing she said on the video was about a woman receiving chemo who was in remission. Again, I had no idea what I was walking into. I went to the dentist last week and there was a reader's digest that said "MIRACLES DO HAPPEN". I wasn't able to read it I just had enough time to glimpse at it when they called my name. I drove back home and a truck was turning out when I turned in that on the side of the truck it said FAITH. On Friday I was looking for my gynecologist's phone number on the internet and below the number is the name MIRACLE. I have to ask myself are all these things coincidental or is GOD trying to tell us something. I still and always have believed that God would not have given Taylor an identical twin for no reason. These babies were in separate sacs and had separate placentas so this is very uncommon that they would be identical.

I have been praying for a miracle for Taylor. I have learned that I cannot put my complete hope and faith in the doctors who don't give her any hope. I believe as Beth Moore says, letting the doctors do what they can do but let God do what he will do. I can only put my faith and hope in God. Continue to pray for Taylor's complete healing. She will be having a biopsy on Wednesday which is the critical moment.

By the way Taylor had a wonderful time on her ski trip. She made wonderful friends and memories. Mary Kay

Wednesday, February 16, 2005 10:38 AM CST

Hello everyone. I have decided to use Caringbridge to update Taylor's progress since it is a website I can edit myself as well as easily add pictures. It looks like we may be spending alot of time in the hospital again so I thought this would be easier. For updates prior to today you can visit Taylor's website www.taylorarrington.com.

Unfortunately we received bad news yesterday from the doctor. Taylor had a PET scan last Friday and two places lit up on the scan. This scan measures hyperactivity in the metabolic system. If things light up, then it means that there is alot of abnormal cell activity. The two places that lit up were in the lung and on her hip bone. These two areas were picked up in January on the CT scan but they wanted to do this test to avoid having to do needless biopsies if at all possible. The one in the lung showed up in January as a 6mm nodule. The PET scan done last week showed abnormal activity to be at 7mm now. The hip area also lit up and is about 6-7 centimeters. There is a big difference between millimeters and centimeters.
We just found out last night and I am still in shock and denial I think. We haven't told Taylor yet or her sister
until we get a biopsy that gives us a definate diagnosis that she has relapsed.

Taylor left last night to go on a ski trip with the Jerry Wunsch Foundation who is a NFL player with the Seattle Seahawks. This trip is totally sponsored through this foundation and the Children's Cancer Center. I didn't find out until I got home from class last night and had to immediately get in the car to take Taylor to the hotel to meet up with the group that was going. I couldn't say anything except to wish her to have a great time and kiss and hug her goodbye. It was so emotional for me although I kept it together for her and her sister

They take 10 kids from Tampa with as well as kids from New Orleans, Seattle and a few other states up to Wisconsin for 5 days. They go snow boarding, sledding, visit the Packer's stadium and have a great time with other kids with similar illnesses. I hope she has a wonderful time.

She is scheduled for a CT as well as a biopsy on the 23rd. They already told us that they believe she has relapsed and we have to start heavy chemo again ect. ect. I just don't understand and I don't know how I am going to tell her or her sister. She has already been through a year and a half of chemo and just finished her chemo a month ago. Please pray for Taylor's healing and a miracle. We always have hope since she has an identical twin that possibly this could save her life. Mary Kay

Sunday, January 2, 2005 6:28 PM CST

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----