Merry Christmas!

We hope everyone has an amazing and fun Christmas. My family loves Christmas and giving to others. I love watching the joy and excitement in my girls on Christmas morning. This is such a wonderful time to build positive loving memories. I love the tradition of Santa Claus and we have so much fun with this.

This December an Christmas we are grateful we did not spend any time at the hospital or in any doctor appointments!! As each month goes by things at home and with Raylee seem to get more and more normal, or more and more back to the ordinary lives we once knew. I know there are many families who are at the hospital this Christmas day and my heart aches for them. It just isn't the place you want to spend Christmas.

Hug your family and friends a little more this Christmas and always remember God gave us His Only Begotten Son, Jesus Christ, so we can return to Him through the atonement of Christ. What a wonderful time to celebrate the life of Christ!

Children with Cancer Christmas Foundation

Check out this amazing organization that serves children and families in Utah, Juab, San Pete, and Wasatch counties in Utah who have a child with cancer. My family is not involved with this organization but I think it is really special and want to spread the word about it just in case someone reading this message has the opportunity to serve, donate, or volunteer for this program. Check out their website at: http://childrenwithcancerchristmasfoundation.org/ it is truly amazing. The BYU basketball team is highly involved in this program. Their involvement in it kind of reminds me of the movie Forever Strong. If you have never experienced this touching movie, I highly recommend it.

"The Children with Cancer Christmas Foundation is a non-profit organization established to bring relief and joy to children and their families, affected by the travails of Cancer. Children with Cancer Christmas Foundation was founded on the idea of helping children in need. A child that is struggling with cancer is especially worthy of protection and care.

There are various organizations that do tremendous good providing support and financing for research and study to find a cure. Children with Cancer Christmas Foundation salutes their efforts, however the emotional needs of these children and their families are what the foundation is designed to help."

Jorja the Performer!! :)

This month Jorja had several performances. She sang at a Winter Fest program to promote and support the performing arts. Her chorus teacher is very enthusiastic and energetic...just what Jorja needs. She can be shy sometimes. She sang several Christmas songs at the Winter Fest. She was also in a dance performance where she did tap and cheer leading. I was so proud of her because she not only did her best at these performances but had fun! She was really pumped about the dance performances because she received two metals. Her elementary also puts on a Christmas program every year where all the grades sing Christmas songs in front of an audience....it has been a busy month!

Loving Santa

We recently were invited to a Christmas party at the Real Salt Lake Soccer Stadium. It was located in their managment offices and was a lot of fun for the girls. They had games, treats, crafts, and one of the Real soccer players to meet and greet them, Chris Wingert. Of course we got his autograph and picture. He gave all the children a gift bag full of fun little toys, chap stick, flowers for hair, and candy. This Christmas party was hosted by Real Salt Lake, Starbucks, and Cricket. In leaving the Starbucks staff gave each family a gift bag with popcorn, soda, candy and a movie. There were a lot of people at this party and a lot of families. For these big businesses to be able to collaborate and plan such a fun and meaningful event for families who have, or are, experiencing severe illness with a child, is incredible. For them it isn't about making money or promoting themselves, it is about giving back to the community and having a cause bigger than themselves.

During this Christmas party Santa walked in the door and it surpised everyone. Raylee ran up to him and hugged him. I got the sweetest picture of her doing this that will be on the wall. The picture reflects a sweet childlike love. Witnessing that moment brought me peace, and I thought of all the kids who believe and have hope in Santa. What a great symbolic figure he is for Christmas. It wasn't about Santa giving presents but about Santa spreading love. I hope Raylee never forgets that moment.

Meeting Santa

We were able to introduce Raylee to Santa Claus at a Make-A-Wish Christmas party. This was also our first time to the 'Wishing Place.' If you have never been here it is an amazing building. In some ensence it felt sacred and peaceful as incredible pictures of children hung on the walls which described the child and their wish. Some of the children have past away. It was difficult to read through all of them at once because you would get that pain in your throat when you are about to cry. It wasn't a sad place however, but one of comfort. It is really hard to describe. I guess it felt like a place where amazing things happen to amazing children.

The girls had so much fun at this Christmas party hosted by Make-A-Wish and their volunteers. Everyone was very welcoming and made you feel like a long lost friend. They had cookies and chocolate milk and made all kinds of crafts. Santa Claus walked in the door and Jorja started jumping up and down with excitement. Raylee, who is starting to understand who Santa Clause is, started trembling. When I noticed her shaking, I wondered if she was just so excited. But when you looked at her face and saw the fear in her big eyes, I knew she wasn't trembling with excitement, it was FEAR. She looked up at me and started moaning and took off running for the door. Jerry chased her down and we had to just take it really easy with warming up to Santa Claus. Eventully, we stood in line to meet him and let the girls tell him what they wanted for Christmas. Jorja made each of them a Christmas list; Raylee's had several things listed on it and Jorja's was completely full. Sure enough-it was two pages long! Silly kid.

Once it was their turn to talk to Santa, Raylee wasn't as scared. She went first and gave Santa her list. He looked over it and hugged her. By this time she was full of positive energy and the expected childhood excitement of seeing Santa. Jorja went next and he looked at her list and tucked in his big red velvetly bag and told her, while laughing, he would read it on his way home. Eventually the line died down and 'Charlie Brown's Christmas' was playing on a big projector screen. Next thing we knew Raylee was going up to Santa to sit on his lap again, and there they sat as if best friends watching this movie. :)

This was not your ordinary Santa Claus. One of the children in line was probably about 4-months-old and this Santa held and rocked this baby in his arms with such tenderness and love, as if it were the baby's last time being held. I wanted to cry, it was such an amazing thing to witness, a picture that will always be frozen in my thoughts. A real love for a child, from a complete stranger, that came from a heavenly healing place. I didn't feel like crying because I felt bad the baby may be seriously ill, or because I was sad. I wanted to cry because it felt so Christ like, a happy type of cry. I've been having those a lot lately :) Witnessing this at 'The Wishing Place' and feeling the wishes of all the pictures that hung on the wall was very sacred to me. If you have never been there, I recommend you see it. In the near future they are going to take us on a personal tour!

I am so thankful my family will all be home for Christmas, because I know some kids and families will spend this holiday in the hospital. You can't plan when your cancer child will be sick, whether it is from Chemo or from a lack of immune system. I am 100% positive there are many families in the hospital at this time, wishing they could be home, with children wondering if Santa loves them enough to visit them while in the hospital. It depresses me and at the same time I feel guilty being so happy that Raylee is finished with treatment and that everything is looking fabulous--my family gets to be home! I pray for those families that they will find comfort in the choas of the hospital and they receive the much needed rest to make the most out of Christmas. If you have a healthy family and children, I hope at this holiday season you thank the Lord above for giving you this gift. I use to watch the show 'Extreme Home Makeover' on Sundays and think to myself, 'I'm so lucky no one in my family is ill.' I thought this because so many of the families are chosen because of trials of illness that one or more of their family meembers experience, so they show a lot of families and illnesses. Little did I know, my child was ill the entire time. The cancer just hadn't exposed itself yet. Who knows how long Raylee lived in discomfort and pain, I will never know. The point I'm trying to make is, you never know when something will happen that changes your life forever--so at this time be thankful for all those good things going on whether at home or at the hospital. This is an amazing time of year!

Life Saving Blood

Today I am grateful for life saving blood. The message from HopeKids below puts giving blood in a different perspective. It also makes me realize that I need to start giving blood. I am very grateful for those individuals, who ever they are and where ever they are, that donated healthy blood that eventually was received by Raylee during her blood transfusion and platelett transfusion, and surgeries. If it weren't for these individuals who kept themselves healthy enough for their blood to go to an immunocompromised child, she may not have made it. I am also grateful for Jesus Christ for giving his blood to all of us....if you read below you will understand what I mean. I feel so inspired to share this with you on Thanksgiving day. :)


Life Saving Blood

"Today's HopeMinute is from HopeKids mom Brenda Empie. Her son is diagnosed with Aplastic Anemia.

Before having children I used to donate blood on a regular basis. I’m a little ashamed to admit that I was frequently annoyed with the time it took out of my day. I never once thought of the ramifications of what I was doing. In my ignorance I never once thought that by donating blood I was donating life.

Then one day a doctor told us that our son has Aplastic Anemia--a type of bone marrow failure--and someone else’s blood will be needed to keep him alive while they figure out the course of treatment. For months, all but the tiniest amount of white blood cells in my son's body were donated by someone else. Someone else's sacrifice of time and convenience kept him alive. I had never been more thankful!

As he got transfusions I would ponder these things. I kept thinking there is life in this blood he’s receiving. I would always thank God that someone took the time to donate life. And then an understanding came to me with such clarity that I gasped. Although the understanding of someone else’s blood sustaining the life of my son was new to me it wasn’t new to God. Jesus’ sacrifice of his time, love and blood is what sustains me. Through His blood I have forgiveness of all my sins AND eternal life. Wow!

I pray that you may know the abundant life that is offered through the precious blood of the lamb. That you would understand and find comfort in his love.

I pray that out of His glorious riches He may strengthen you with power through His Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge - that you may be filled to the measure of all the fullness of God. (Ephesians 3:16-19, New International Version)

-Brenda Empie, HopeKids mom, Utah Chapter"

Oncology Follow-Up

Today Raylee had a follow-up appointment with her oncologist. She was so excited to go back to the hospital this morning. She wanted to spend the night. What Raylee didn't realize was this follow-up appointment not only was going to take all day, but it wasn't going to be much fun.
We started the day with a CT scan. Since Raylee is under 4-years-old she has to be prepped for sedation regardless if she is sedated for the scan. This meant that Raylee couldn't eat or drink since midnight the night before the scan. This didn't seem to bother her too much. When we checked into medical imaging they took us back to a room to give Raylee and IV. Since Raylee no longer has her central line an IV is needed to inject the dye for the scan. Raylee's hope of having a fun day at the hospital was quickly stolen. She knew exactly what the nurses were going to do and she began to cry and scream "no poke!" She is one hell of a strong kid. She sat in Jerry's lap while he held her tight and it took 3 other nurses and myself to keep her as still as possible. She still managed to wiggle, fling herself, and push herself out of Jerry's arms. They had a difficult time finding a vein for the IV. They tried a technique of turning the lights off and putting a light on her hand to find the vein. This worked but the IV looked like a disaster--and it hurt Raylee really bad. Raylee was ready to go home by this time and we had only been there for 30 minutes. We still had a lot to accomplish.
After the IV, one of the radiologists brought out a jug of contrast to drink for the imaging. They flavor it to try to disguise the awful taste. It isn't easy trying to get a 3-year-old to drink this; especially because it's almost 20 ounces that she needs to drink. We wandered around the hospital encouraging her to drink and trying to keep her entertained as much as possible because the imaging can't take place until 1 hour after she starts drinking it; we simply had time to kill. We spilt the contrast once and lost track of how much she drank--but we have been through this before and we were not worried about it. Even though the nurses say she needs to drink a certain amount, she had scans in the past and wasn't able to drink it all and the images turned out fine. After drinking half the amount needed Raylee started looking as if she was going to throw it up as she gagged it down and began refusing it. So we proceeded with the imaging.
Raylee is a very curious child. Prior to the CT scan she wandered back to the radiologists offices and the employee hallways by the CT Scanning room. The radiologists didn't mind and it was as if they took her on a private tour. They showed her their computers and imaging machines, where they work, and what things do. It was kinda funny because she was asking them questions, What is this? What does it do? They promised to show her the images of her belly on their computer when she was done. And they did just that, they showed us her images and it was really amazing how these machines shaped like a doughnut can take such amazing pictures of organs and every in between skin and bone. Since she's experienced many CT scans now, I knew she wouldn't have any problems lying still for it and sedation wouldn't be necessary. It actually seemed to relax her after the traumatic IV experience. The actual pictures only take around 10 to 15 minutes.
These were not the only pictures to be taken today. Raylee also had an echocardiograph. The follow-up echos are very short around 10 minutes. They are important to ensure she has no heart problems from having chemo. Raylee was nervous for the echo but she came out of it like a champ. By this time she received two new stuffed animals for being amazing, a teddy bear in medical imaging and a stuffed dinosaur from cardiology. (Big Sigh) No wonder Raylee gets excited to go to the hospital--they give her toys and stuffed animals.
After all the tests we finally made it to oncology. The staff there just love her and build up her self-confidence as they tell her how amazing she is, how cute she is, how smart she is, how happy they are to see her, etc. One of the nurses came in to draw blood and Raylee patted her on the bum and said, 'Feel my hair it's soft." Her oncologist kept telling us how happy she was that Raylee's treatment was short and that she is doing so well. She was happy to say nothing abnormal was showing on any of the images. What a relief! I knew nothing abnormal would show but hearing the words from her oncologist was liberating.

Make-A-Wish

The social worker assigned to our family at the hospital partnered up with Raylee's oncologist and they referred her to Make-A-Wish. Today Make-A-Wish called me and said they wanted to grant Raylee a wish. I am so excited for Raylee to be able to make a wish, it will be fun and a great experience for her and our family. They said their wish granting volunteers will call us and arrange a time we can meet them. I told them we have donated money to Make-A-Wish before and never thought that our kid would be a recipient. They told me not to worry about anything and to just have fun with Raylee.
I am not sure what Raylee will wish for. What if she wishes for a real live horse?!?!?!? LOL

Heaven Is Real

My sister recently sent me a book called "Heaven Is Real" by Todd Burpo. It is about a young child named Colton Burpo who almost dies due to appendix rupture and after he recovered it was discovered the child had an after life experience. This book was amazing and I could not set it down. I only set it down when I would read something that made me cry and I would need to walk away to compose myself. Colton was only 4-years-old when he got really sick and had almost died. Months after his recovery he describes heaven and Jesus Christ. This was a great story. Through Raylee's fight with with cancer many people reached out to us and helped us in many many ways. It wasn't easy to take the help and it was an extremely humbling experience. We understand that through Jesus Christ people get inspired to help others and if we didn't except the help from others we would prevent them from reaching those blessings from God and fulfilling the inspiration they received. My sister marked a section in the book "Heaven Is Real" and stated it remindd her of me and Jerry. This is what it says:
"We were adamantly self-reliant--maybe, in retrospect, to the point of being prideful. But that grueling stint in the hospital snapped our pride like a dry twig and taught us how to be humble enough to accept help from other people, physically, emotionally, and financially.
It's good to be strong and able to bless others, yes. But we learned the value of being vulnerble enough to let others be strong for us, to let others bless us. That, it turned out, was a blessing to them as well."
We are indeed grateful for Raylee's progress in recovery. We are indeed grateful for everyone who reached out to us to help support us just as it says above--physically, emotionally, and financially. I can't believe it is November. So much has happened in the last 6 months and time has flown by, but yet at the same time it seems like the last 6 months were 6 years. I think that is because of how exhausting it has been. What has helped us get through this is the stability of all of our supporters. That is what has made such a difference.
There is a quote a friend gave me when Raylee was really sick that says "Gods promises are like the stars; the darker the night the brighter they shine." David Nicholas I encourage all of us to stay close to God and as little Colton in the book "Heaven Is Real" would say, and keep Jesus in your heart. God doesn't always make things happen the way we want, and sometimes we all experience hard times, but this is all part of the bigger plan of refining us so that someday we will understand how to be like Him. In saying this, it doesn't mean I never got upset with God that Raylee was so ill, I sure did. I think that's normal as long as that anger doesn't get the best of you and doesn't hurt your relationship with God.

100 Days Cancer Free!! :)

Today is a mile stone! It has been 100 days since Raylee's cancer was removed. I thought about having a big celebration for anybody who wanted to come celebrate with us. But I decided to wait until spring when it is warm outside and we can have bouncy houses for the children. Today the high was only 40 degrees and we woke to over 6 inches of snow. A celebration is in the making. However today we did celebrate between the 4 of us and just made it personal.

Like I said, it snowed last night and we woke up to pure whiteness. Of course, Raylee and Jorja wanted to go right outside and start playing in it. They had to wait until at least it was sunny. So around noon we put the winter gear one and out the door they went. My girls love the snow. For some reason it seems to be a white fluffy blanket to them because they fall into it as if it will protect them from hitting the ground. It seems that with each season there is an excitement from them for the change. In spring they will be excited for summer. They get excited for all the holidays that come with each season as well. I wonder if this type of 'childhood excitement' is something Christ wants us as adults to have when He asks us to be like children. They look forward to the changes, we as adults often complain about them especially the winter time because of the cold and snowy conditions as they bring an inconvenience to us. Instead of looking at the snow as an inconvenience I like to look at it as a pure white blanket that cleanses everything. Do you ever notice how it is more quiet outside when it snows as if the snow itself muffles noise? Or how it just seems to calm everything down (maybe not rush hour traffic but besides that)?

It is hard for me to realize that 100 days has gone by since Raylee had major surgery to remove the monster that laid inside her. It seems like a distant but recent nightmare all at the same time. She is adjusting well. The month of November she does have lots of follow-up tests to find any side effects to the chemotherapy and to scan for any returning cancer cells. The other day we were able to get her caught up on all her vaccinations and dental appointments. Chemo therapy does a number on the mouth resulting in tooth decay. Raylee has a few cavities and will have them fixed in December. Since she is so young she will have to b e sedated for the procedure. She was also weighed the other day and she has gained more weight. I am proud of her, she now weighs 29 pounds.

We keep moving forward and we keep trying to adjust to our new normal. It hasn't been easy. Raylee has a different realization of being a kid. When she plays with her Barbies or her dolls they go to the hospital for Chemo medicine. She is always taking about Chemo medicine. I struggle with excepting the impact the Chemo experience had on her. Some nights she still wakes up crying because she has nightmares. She isn't scared of anything or anybody. She freaked out at the dentist office because they are like doctors. She freaked out when the nurse was giving her a flu shot and her missing vaccinations. She has several more tests this month including the CT Scan which they will sedate her for if necessary. It fear it is going to be a bumpy month.

Happy Halloween!

So Jorja is ill with a bacterial infection in her mouth. So this Halloween we just took it easy. Our neighborhood had a trunk-or-treat Saturday so we were able to participate in that. Jorja dressed up like a pirate and Raylee dressed up like a cowgirl. She said she was Jesse from ToyStory. It wasn't a Jesse costume but we went along with her. They had fun at the trunk-or-treat and we were happy because the weather was nice. Jorja went to the doctor today as well and was prescribed a heavy duty antibiotic. Her doctor told her he only sees this infection about 3 times a year. I don't remember what it was called but it creates blisters all over the mouth, lips, and tounge. They look like cold sores but they aren't cold sores. She isn't able to eat or drink. Her doctor is afraid she will dehydrate. She has a fever as well and isn't able to go back to school until her fever is gone.

Today I received an awesome story from HopeKids about pumpkins. I have heard similar versions of this story before but thought I would share it below:

"PUMPKINS"
"One of the best things about Halloween (besides trick or treating, of course!) is picking out just the right pumpkin; the one that is perfect for carving. First, you wash the outside to make it all shiny and ready to be cut open. Then, you cut the top off and scoop out all the yucky, slimy insides. Afterwords, it’s time to carve the face, put the candle in and step back to admire your masterpiece.
Did you know that being a Christian is very similar to a pumpkin? Just like we choose a pumpkin for carving, God chose YOU, a uniquely created human being, to be on this earth. Your life is no accident. You were placed here with a purpose and a plan.
Most pumpkins are full of dirt on the outside that needs to be washed off. We also have dirt in our lives that needs to be cleansed. That’s what Jesus did when he died on the cross for our sins. He wiped away all of our sins to make us brand new creations! When you accept Jesus into your heart, God scoops out all the yucky stuff, just like we do when we carve a pumpkin. He takes the seeds of self-doubt, hatred, greed, pride, and any other sin we have in our hearts and He cleans us all out. It says in 2 Corinthians 5:17 “Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!”
The Lord will then carve you a new smiling face and put His light inside you to shine for the world to see! “In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.” Matthew 5:16
This Halloween let your light shine for Jesus, and when you see the carved pumpkins in front of homes as you trick or treat tonight, be reminded of all He has done for you.
-Bridget Asheim, Arizona Chapter"

Grassroot Advocates

A message from the American Childhood Cancer Organization:

"Children with cancer rely on us as their family, friends and community to be their voice. While they fight cancer in their bodies, we must be ready to fight this disease as their advocates. They cannot lobby. They cannot vote. They must use their collective strength to fight the cancer. We must use our collective strength to fight the "system." We must educate ourselves on legislation that can positively impact our children's treatment. We must be willing to take time to call our government representatives and let them know how this disease impacts our families.

We are the "grassroots voice" of this cause. We have a lot of work to do as we strive towards the day when all of our children will survive and lead a long and healthy life. Thanks to all of you who continue to join together with ACCO to strengthen our grassroots voice. We do this "because kids can't fight cancer alone."

Ruth I Hoffman MPH, Executive Director"

"The term "grassroots" refers to a group of people who have been impacted by a cause and who stand united behind a movement to make a difference in that cause. As families of children with cancer we are the grassroots voice of our nations' children with cancer. In order to strengthen our grassroots community we need to be informed about policies, legislation, decisions, and opportunities that impact our children's treatment and quality of life, and advocate for better treatments for those children who have yet to be diagnosed."

Message from HopeKids

"Anniversaries and Milestones"

"We are fast approaching that hectic time of year when we celebrate Halloween, Thanksgiving, Christmas and the New Year all in the span of just two months. These events make us busy—with so much time, effort and money devoted to them. Do you ever take a moment to stop and remember the special anniversaries and milestones that are important in your own life? What if you were to celebrate them with the same effort as you do the holidays?

There are many events in our lives that help shape us as individuals and as families. Perhaps the event is one you that you wouldn’t have chosen; the loss of a loved one, loss of a job, or a betrayal. Even though the memory may be painful, remember that it is through events like these that God helps mature us and prepare us for the future. Taking the time to remember specific anniversaries or milestones, to reflect on how far we have come, or what we have overcome, is important.

Maybe for some of you today is the anniversary of a significant moment that is worth remembering or celebrating. God’s desire is that we live our lives in such a way that despite the good or the bad, we are able to take joy in seeing how far we have come.

Whatever the reason or whenever the date, take some time and make an effort each year to remember the moments that have special significance to you and your family.

- Josh Taylor, HopeKids President"

Trip to Bear Lake

This weekend we were privileged enough to be sent away to Bear Lake for the weekend. We stayed in a little cabin not far from the lake. It was unbelievable how beautiful it was there. The way the orange and yellow leaves contrasted with the turquoise water was remarkable. I decided I wanted to move there! :) If I can convince Jorja tha the Bear Lake Monster is not real she just may agree to move.

We had a wonderful time thanks to HopeKids and eTrade who made this weekend possible. To see the excitement on the girl's faces when they saw the cabin and the log bunkbed they were going to sleep in was priceless. They had so much fun. This was the first time in a really long time that our family had nothing else to do but play, relax, and have no worries!

Gold Ribbon Ordered!

Raylee's gold ribbin for the Awareness Tree at "Light Up The Holidays with Hope" which will be held Saturday, 12/3/11 in Washington DC.

Local high school students in the Washington DC area volunteer their time to make all of the gold ribbons for the Tree. The tree is covered with thousands of gold ribbons which bear the name of a child with cancer.

"Every year, a 23-foot tree is erected in the Old Post Office Pavilion in Washington D.C.. This tree is decorated solely with gold ribbons, the symbol for childhood cancer. Each ribbon bears the name of a child who has or has had cancer, and families from across the nation send in their children's names to be part of the tree. This is a powerful symbol that is seen by thousands of people every year.

Passersby are touched by the sheer volume of ribbons and names."

Once this event is complete and tree is taken down the ribbon bearing Raylee's name will be mailed to her.

Raylee--Update with Urology

Raylee had a follow-up appointment with Urology today. When they called her name to go back to the patient rooms there were around 5 staff members standing outside of the waiting area. They were surprised to see Raylee so happy and playful. All of them said, 'She must be feeling better; she is so happy!' Raylee was happy and her mission while we were there was to play with all the toys possible. If you have been blessed enough never to have experienced Primary Children's hospital like we have, you must know that in every office, corner, little area, or just anywhere you can fit toys....there are toys. This place if full of every toy imagined. Since Raylee has experienced pretty much every floor and department (expect the burn unit and NICU) she knows when she is there she will be playing. She know calls Primary Children's "Her Hospital." She obviosuly thinks all the staff are there for her and her needs. The great thing about the staff there, they really do make her their focus and love her. They are wonderful as they express their excitement to see her and their happiness that she is feeling so well. They really do make it seems as if they came to work that day just for her--now that really is something remarkable!! Her urologist said she looks as if she has grown. This is true. Raylee has gained weight and has ground taller. Her face and arms are not that of a scrauny child who looks as if they are starving, but one who is filling out. Her cheeks use to be so chubby and would jiggle when she slept in her car seat during a trip in the car.

Prior to visiting the urologist Raylee had an ultrasound on her bladder and kidneys. The results couldn't have been better! Her bladder, larger than normal, is doing great and draining as it should be. Her kidneys look healthy and better than they did a month ago! This is all great news and such a blessing. We do not have to visit Urology for an entire year!! What a releif.

Whenever Raylee has an appointment I notice I experience a type of anxiety and fear that I cannot describe, but it is HELL. In November Raylee will have her first follow-up with Oncology as it will be her 3 month checkup. I am excited for them to see how great she is doing but fear and probably will always fear the CT Scan and all the tests that will be completed to ensure her cancer is not returning. This is my biggest fear. I never want her or my family to go through this again. This checkup will be done every 3 months. Every 3 months I feel as if we will be at God's mercy in a way I never thought I would be.

Light Up the Holidays with Hope

The American Childhood Cancer Organization sponsors a Christmas tree every year which is decorated in gold ribbons bearing the name of a child who is experiencing or has experienced cancer. This Christmas tree is located in Washington DC. I will definately order Raylee's ribbon, she deserves to have her name placed on this Christmas tree for everyone to see. What an amazing way to spread awareness of Pediatric Cancer---please read the information about this below:

""Light Up the Holidays with Hope" has become our nation’s largest annual childhood cancer awareness event. Each year during the December holiday season, a 23 foot tree is placed in the lobby of a building in Washington DC. The tree is solely decorated with thousands of gold ribbons (the symbol for childhood cancer). Each ribbon bears the name of a child who has, or has had cancer. The tree glitters strong in our nation’s capitol for all to see. Thousands each year are touched as they are reminded of our nation’s youngest cancer patients.

Each year, a lighting ceremony is held to light the tree, honor our cancer children, and enjoy some fun activities with our families and friends."
This information was taken from the ACCO's website: https://www.acco.org

A Message from ACCO

I received a message from the American Childhood Cancer Organization and posted a section of it below. I wanted to share this section with you because the part I bolded made me cry and cry.

"It will be National Childhood Cancer Awareness Month for a few more hours. As we reflect on the activity of the last thirty days, we must admit that we don't feel the momentum slowing at all. Sure, Awareness Month is almost over, but life for those who are dealing with the effects of childhood cancer will not change drastically from September 30th to October 1st. We know that families don't stop dealing with this disease once September is over, so our efforts shouldn't stop either.."
This was written by the ACCO Program Director, Amber Masso.

Barbeque with Starbucks!

Tonight we attended a barbeque with HopeKids sponsored by Starbucks and their Community Service partners. There were so many people and kids. It was located at a local park. This event also was like a carnival for kids. They had a bouncy house, games, crafts, cotton candy, and the best part was--a local K-9 police unit was there! There were two K-9 police dogs, one was a 4-year-old German Shepard and named Qunito and belonged to Sgt. Thomas. This dog finds criminals and Sgt. Thomas stated Quinto's reward is biting them when he finds them. The other K-9 was only a few-months-old and it was his 2nd day on the police force. He was the cutiest puppy, a little blood hound who didn't have a name yet. Raylee, Jorja, and I, all just loved this little puppy and Quinto.

Again, it was great to see the girls play and have fun without any worries. Their laughter is growing and growing, as they begin to transition to a more normal, and better, reality.

Jorja Receives a Trophy for Courage

Raylee received a trophy from SuperSibs today in the mail. It is an actual trophy. On the plauge it says Jorja's name and says "For your Strength, Courage & Love YOU are a SuperSib!" It came with a note thata said:

"Dear SuperSib, In our eyes, YOU are a SUPERSTAR. And for that, you deserve special recognition! in fact, this trophy was made with YOU in mind. We hope it will always be a symbol of strength for YOU-and a reminder of how wonderful you are. With love, SuperSibs"

Jorja is an amazing kid...she is an inspiration of courage. This trophy made Jorja's day. She was beaming when she opened the box it came in. She had dealt with a lot lately and the trophy came on a day she really needed! She had a bad day at school and this morning we had news that our Great Grandma Fuller had passed away last night. She was Jorja's Great-Great Grandma and she was 99-years-old. She lived a full life and was born 2 days after the Titanic sank. Jorja was really sad about this, she thought Grandma Fuller was very interesting.

A note came with the trophy and asked us to send a picture of Jorja holding the trophy to SuperSibs!

Wasatch Adventure

Way to go Raylee's team!! We had 9 team members and raised $150 to donate to HopeKids! Several team members were able to attend the Wasatch Adventure with us. We would like to give a heart felt thanks to all Raylee's team members. The Wasatch Adventure was at Fort Douglas in Salt Lake City. It was a beautiful sunny cool day. Jerry and I did not know what to expect from the Wasatch Adventure since this was our first experience. We have never participated in any type of cancer walks before. Next year we plan on marketing this better since we know what to expect and know what it is about. So anyone interested in participating with us next year...get ready! :)

The Wasatch Adventure was like a carnival for kids. They had several giant bouncy houses, music, snowcones, cotton candy, popcorn, pizza, and games for kids to play. They had several team mascots such as the lion form Real Salt Lake soccer team and the Hawk from the University of Utah. They also had Miss Utah and Miss Arizona. There were characters walking around such as Disney Princesses, Tinkerbell, and Batman. It was amazing! It was amazing to hear my girls just laugh and laugh. Raylee would not leave the bouncy house. She was so happy and having so my fun, even though she was really tired she kept jumping and going down the slide in the bouncy house. She was an animal!! My nephew also joined us and him and Jorja were buddies as they bounced away and tired themselves out.

It was such a peaceful feeling inside to hear Raylee laughing like she was....I am grateful the Wasatch Adventure was able to bring this out.

The Wasatch Adventure is designed for the kid, but really we are all kids so everyone can have fun. They have a 5K race, 5K walk, and Adventure Walk (1 mile). Next year I want to be conditioned to participate in the 5K race!!

There was a giant poster to place a picture of your HopeKid on it....I definately placed a picture of Raylee on it! She definately is an inspiration of HOPE!

CIRCUS Time!!

Today Raylee and Jorja went to the Ringling Brothers Barnum & Bailey circus with their Grandma Patty. They were given tickets from HopeKids! They were able to participate in a preshow with HopeKids which allowed them to meet many of the performers and be close to the performing animals. They witnessed an elephant painting a picture. This event brought an excited anticipation within my girls...and their grandma :) They had a blast! This was an experience they will never forget and they are still talking about it!

Barbeque with the Bikers for Christ

This evening we attended a barbeque with HopeKids sponsored by the Bikers for Christ. It was at a local park and was a lot of fun. They had many many Harley Davidson motorcylces which of course made Jerry drool. They also had a mini car show with a lot of '69 Chevy Camaros and '69 Chevelles which made me drool. :)

Every day I am amazed at all the people and groups who reach out trying to ease what all the HopeKids families are going through or have gone through. It hasn't been easy. It seems like going through Raylee's cancer happened so fast and I thought I had dealt with all the emotions from it, but I haven't. I have been really depressed from it, some of it may be that I am really exhausted. It seems like it is catching up to me now. But having something to go to like barbeque sponsored by a group of people because they care and want to make a differce ignites my energy and hope that all will be well. It is true, there are people all around taking action to make this world an easier and better place. I am truly humbled and grateful for these people and the director's of HopeKids who organize these things. Tomorrow the girls are going to the circus with HopeKids, something we wouldn't be able to purchase right now due to the financial strain of medical expenses.

All these great events and experiences are certainly educating me on many groups or organizations whom serve others, such as Bikers for Christ. In the Bikers for Christ's Statement of Faith it states, "We believe that love is more important than the most spectacular gifts, and without this love all exercise of spiritual gifts is worthless." If you would like to check out more about this group go to www.bikersforchrist.org

Slow Dance

This poem was written by a terminally ill young teenage girl in a New York Hospital.

SLOW DANCE

Have you ever watched kids
On a merry-go-round?

Or listened to the rain
Slapping on the ground?

Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?

You better slow down.
Don't dance so fast.

Time is short.
The music won't last.

Do you run through each day
On the fly?

When you ask How are you?
Do you hear the reply?

When the day is done
Do you lie in your bed

With the next hundred chores
Running through your head?

You'd better slow down
Don't dance so fast.

Time is short.
The music won't last.

Ever told your child,
We'll do it tomorrow?

And in your haste,
Not see his sorrow?

Ever lost touch,
Let a good friendship die

Cause you never had time
To call and say,'Hi'

You'd better slow down.
Don't dance so fast.

Time is short..
The music won't last..

When you run so fast to get somewhere
You miss half the fun of getting there.

When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.

Life is not a race.
Do take it slower

Hear the music
Before the song is over.

-------------------------------------

My friend sent me this poem in an e-mail which is meant to be forward through e-mail but I really wanted to post it on the blog. When I was reading this e-mail I would read a little and walk away and cry, then read a little and walk away and cry. It really pulled at my heartstrings and buts life in a perspective. I hope it touches you and you get the message this young girl is sharing.
Best Regards,
Melissa

Hats Off For Cancer

Raylee received a Tinkerbell ball cap in the mail from "Hats Off For Cancer." This is a international organization that has given more than one million children around the globe a since 1996. How incredible and creative! What an amazing thing to do. When Raylee received her hat she was smiling and happy. She felt sooooo special. The hat is too big and drowns her, but she didn't care. She wore it proudly, and I wouldn't have expected anything less from her.

We also received a letter from NENA (Neuroblastoma Epidemiology in North America) based at the University of North Carolina Gillings School of Global Public Health. The letter stated Raylee has an opportunity to help provide knowledge about neuroblastoma by being part of a research study. Since Raylee is part of a study by the COG (Children's Oncology Group) she is part of the CCRN (Childhood Cancer Research Network's) registry. This means her name and my contact information will be shared with other pediatric cancer research studies. We will receive additional information about this study soon and then we can decide if we want to be part of it. We basically decided that all these studies will want a part if her tumor to study. We already allowed the COG to have the tumor and the piece from her biopsy. They also have a sample of her bone marrow, bone, and blood. This is one way we are able to help pediatric cancer researchers to help prevent neuroblastoma, find better treatment, or just help the medical professionals understand this horrible disease better. A "horrible disease" isn't the best way to describe what I feel about cancer, I am sure you know I hate it, but to put it into written words will cause me to use inappropriate language. I haven't hated something with everything I am for a really long time. But I really hate cancer! I hate what it did to my daughter, and what its mission was to do! I hate what if does to other people. I hate the treatment.for cancer Andrews how it makes the patient so sick. I hate watching people who are doing things to increase their chances of getting cancer like smoking, drinking, not eating well nor being active. When I see someone smoking I wonder if they really know what could be going on inside of them, I wonder if they really know what cancer is capable of. I want to reduce my chances of getting this, I want to reduce the chances of my family getting this again. Some cancers, like Raylee's, is unavoidable--but those cancers that are avoidable--I want to avoid.

A Fever

Last night Raylee had a little fever so today I've watched her really closely and have checked her temperature like an over compulsive parent. I don't want her to get sick and I am really scared she may. I really don't know what's considered a low or high fever for her anymore. I know in a few more weeks Raylee's immune system won't be considered compromised as it has been, but the thought of exposing her out in public like normal brings anxiety. I know I can't shelter her forever. I have taken her to the store a few times early in the morning before a lot of people are around. I carry travel sized Clorox wipes with me and wipe the shopping cart down. I probably look like I have some type of germ phobia.

Today I was asked to go to one of the offices I work at (I rotate through different offices) and since I was home with Raylee I took her with me. They had a quilt made for her with square patches in different patterns of pink and blue. It came with a poem I will add in this blog. On the back of the poem there are sweet messages from those who went in on the quilt. They also gave Raylee a doll made of all the same materials the quilt was made of. They face Jorja a giant Teddy Bear. Giant really is an understatement for the size if thus stuffed animal, it is larger than Jorja. The girls love there gifts and won't part from them. I work with the sweetest people, seriously some of them don't even know me that well and they still were part of this. The outreach people have given my girls, and Jerry and I is remarkable! Of course Raylee showed off while we were there; it was fun to see like that.

.......................................................

Quilters Prayer

May each block represent us as persons, unique and different in every way
Fastened tight and bonded to one another, keeping cold and illness at bay
May each colorful pattern be the happiness, and love and support for one and all
Let the soft fabric be the cushion on our knees when a tough time makes us fall
When one of us is chilled in trials, let us be the quilt that makes them warm
We will wrap ourselves around you tight, to protect you from the storm
May the yarn tied around each of us be s prayer if hope, and well wishes too
Let our quilt be a gift of compassion and friendship, when you are feeling blue
For in happy times, and in sorrow we all are in this together, bonded in every seam
At the end of the day, pull up our quilt tight-and we will comfort you while you dream

...............................................

This is an amazing quilt and poem. I cried when I read it and cried again when I read the messages written on the back.

Thank you guys so much for your support and love! It means so much to us!

Hair Growing Back!

Raylee's hair is growing back and it is super cute and fuzzy. It is adorable and I just love it! I remember having such a difficult time when it fell out and now it's hard to remember her with hair. Her cute little bald fuzzy head seems to fit her so well. We love to rub it and it's so soft to feel on your cheeks when you hold and hug her. I can't imagine her with hair right now but will enjoy her cute fuzzy head while it grows back! I just can't stop taking pictures of her as I want to remember and enjoy this time forever! It seemed her hair was coming in extremely blonde that it seemed white, but now it looks as if it with be the light brown/blonde color it was before. :)

Gold Ribbons!!

I hope I found the correct information. On-line I searched for the color ribbon of Neuroblastoma and it is GOLD. Gold is also the color ribbon to show awareness for Childhood Cancer.

I will make many Gold Ribbons to show awareness in honor of Raylee. If I am not able to give you one, and you want to make one to join us, please do so. You will be showing support and awareness for not only Neuroblastoma cancer patients but for all children experiencing pediatric cancer!!

Best Regards!! :)

Join Raylee at the Wasatch Adventure Saturday, 09/24/11

If any of you are interested in this event you can register on the following website--Check it out! http://www.wasatchadventure.org/ Our team is called TEAM RAYLEE. We are donating $80, or $20 per person for each member of my family. Please see the information below...

We will be there with Raylee and participating in the Adventure Walk!! Any of you are welcome to bring your kids and join us, however you don't have to have kids to come! Registration is free and donations are incouraged but an opion. So please don't feel like you have to make a contribution to attend the Wasatch Adventure or to come walk with Raylee.

Raylee is a HopeKid and Jorja is a HopeKid Sibling. We are currently participants and now LIFE TIME supporters of this amazing program!!

"HopeKids provides ongoing events & activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. We surround these remarkable children and their families with the message that hope can be a powerful medicine."

Please pass on the word! :)

.........................................................................

"Come out and join us for the 3rd Annual HopeKids Wasatch Adventure 2011, held at the Fort Douglas Bandstand at Fort Douglas on the University of Utah Campus (200 Fort Douglas Blvd, Salt Lake City, UT 84113)." On Saturday, 09/24/11

"Registration starts at 9 AM, Races start at 10:30 AM. Get a fundraising team of up to five together and choose one of four activities to participate in:

1.The Adventure Walk: Suitable for kids and families, follow our 1 mile route visiting each of our Adventure Stations. You never know who you might meet!
2.5K Walk.
3.5K Run.
4.Remote Participant: If you are unable to be at the event on September 24th, feel free to get one or more teams together in your community and walk or run for Hope!
When you walk or run to support HopeKids, you are raising the spirits of hundreds of kids and their families in their greatest time of need. You are giving them the gift of HOPE!

HopeKids is a registered 501(c)(3) nonprofit charitable organization. Over 92% of our revenue goes directly toward serving our families.

Prizes will be awarded to the top 3 fundraising teams. Registration and donations are being handled by FirstGiving. To register for the Wasatch Adventure, follow this link:

http://www.firstgiving.com/hopekids/hopekids-wasatch-adventure

HopeKids does not charge a registration fee–instead we ask each team of up to 5 individuals to raise $100 (that’s just $20 per person). Or, if your team is more than 5, just make sure your average amount is $20 per person. And, if your team raises an average of $75 or more per team member, each team member will receive a HopeKids Wasatch Adventure T-Shirt!"

We hope to see you there!!!!

A Message from Cure Search

"September 1st marks the beginning of Childhood Cancer Awareness Month. At CureSearch for Children's Cancer, we honor and remember the children whose strength and courage guide us to fund research so that one day, no parent will hear the words "your child has cancer."

Today, 36 children will be diagnosed with cancer. Tomorrow will be the same, as will the day after that and the day after that - 13,500 children are diagnosed with cancer every year. 1 in 5 children will lose his or her battle with cancer.

John L. Lehr
President and CEO
CureSearch for Children's Cancer"

September is National Childhood Cancer Awareness Month

Please join my family in honor of RAYLEE in spreading awareness about childhood cancer.

The following press release came from The White House by our President Barack Obama on 09/01/11 it can be found on the following website: http://www.whitehouse.gov/the-press-office/2011/09/01/proclamation-release-national-childhood-cancer-awareness-month-2011

"Proclamation for Release - National Childhood Cancer Awareness Month, 2011"

"Across America, thousands of courageous children fight pediatric cancer each year, facing life‑threatening battles that would challenge men and women of any age. They are cared for by loving families, friends, and communities who band together to support children in times of great need. From raising money for research and hospital stays to offering compassionate assistance to families who have lost loved ones, Americans are working every day to combat childhood cancer.

Today, research advances have made pediatric cancer more treatable than ever before. The five‑year survival rate for young patients has risen to 80 percent in the past half century, but serious challenges remain. Children who survive cancer frequently struggle with significant complications later in life and researchers are working to develop treatments specifically for pediatric cancer. We still know too little about the causes in young people, and cancer remains the leading cause of death by disease for children in America under the age of 15.

As we work to better understand and combat these destructive diseases, my Administration is working to lift some of the burden on families affected by them. Because of the Affordable Care Act, insurance companies can no longer deny insurance to children because of pre‑existing conditions, meaning that children who are currently suffering from or have survived cancer must be covered. Insurance companies are also banned from rejecting insurance for children participating in clinical studies, in which the vast majority of children with cancer take part. And the Affordable Care Act prohibits insurance companies from imposing lifetime dollar limits on health benefits ‑‑ freeing cancer patients and their families from worry of long‑term treatment affordability. Meanwhile, the National Cancer Institute continues to conduct and fund research on the causes of these diseases, linking research on genetics and adult cancers to more effective treatments for children.

Too many children and their families have faced the harmful effects of cancer. In memory of the young lives taken from us far too soon, and in honor of the families who stood beside them, we continue to support researchers, doctors, and advocates working to improve treatments, find cures, and reach a tomorrow where all our children can lead full and healthy lives.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2011 as National Childhood Cancer Awareness Month. I also encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of September, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA"

"kids can't fight cancer alone!"

I am now a member of the American Childhood Cancer Organization or ACCO. This organization is in the process of sending my family around 6 different books. Some are for Jerry and I, and some are for the kids. The children's books are designed to express emotions they may have felt or are feeling. The books for us parents are educational tools. This organization is also willing to reach out to children's educators to help inform them understand what student with cancer or sibling is going through and how it can effect them academically.

This is an amazing national organziation!!

Check out their website: https://americanchildhoodcancer.org

Or, check out the information below from the website:
"Our mission is to provide information and support for children and adolescents with cancer and their families, to provide grassroots leadership through advocacy and awareness, and to support research leading to a cure for all children diagnosed with this life-threatening disease.

While treatment for childhood cancer has improved drastically over the past 38 years of our organization’s existence from less than 20 percent survival to an approximate 75 percent overall five year cure rate, sadly childhood cancer remains the number one disease killer of our nation’s children.

Children face aggressive treatments leaving a trail of devastation for their families. The diagnosis of a child with cancer is often at a time when the family is young and has a limited income. Often there are other small children to care for. Often one parent has to stop working to care for their sick child. The impact of having a child diagnosed with cancer is deeply felt financially, socially, and emotionally by the entire family. The needs are great and since our inception in 1970, ACCO has become a recognized leader both nationally and internationally in the providing pediatric cancer family support.

Founded in 1970, the American Childhood Cancer Organization® is the largest grassroots childhood cancer organization in the U.S.. We have serviced more than 100,000 families of children with cancer, and we work to raise awareness and to advocate for their needs and for funding and research.

We are the largest publisher and distributor of free childhood cancer books in the country. We host the largest national childhood cancer awareness event each December holiday season. We represent childhood cancer on numerous cancer organizations and to members of Congress on Capitol Hill; and we support cutting edge research that leads to new and better treatments for our nation’s littlest cancer patients.

As the largest childhood cancer grassroots organization in the country, we know first hand that "kids can't fight cancer alone!"

Surgery Follow-Up

Today Raylee had a follow-up appointment with her surgeon, Dr. B. The appointment went well and Raylee's doing amazing! It is hard to explain how well she is doing because it is such a miracle and it's still difficult to comprehend everything. So much happened so quickly and it was difficult to keep up with the chaos of Chemo, keeping educated on cancer treatment, trying to make the best decisions, juggling being home for Jorja and at the hospital with Raylee, and keeping hope alive while scrapping for any strength I could find. All this choas has ended and now its hard to adjust to a more normal routine because I feel as if everything is still catching up to me. The reality of what we've gone through is still sinking in.

However, what's important is that Raylee is recovering so well! She has even gained 2 lbs! She has never weighed more than 25 lbs. When we last left the hospital she was at 24 lbs. Today she is at 26 lbs. I am so proud of her! She is sleeping better than she was. She still gets scared and has bad dreams but its manageable and the intensity of her fear has subsided. She seems to be playing even more than before her diagnosis, and doesn't whine like she use to. She is down right a happier child who enjoys herself. I too, am filled with so much relief I have a deep joy within myself that goes to my core! What a blessing! I am so thankful for these miricales and for good health. This wouldn't never have happened if it weren't for the Lord Jesus Christ. We know he carried Raylee through this experience and we pray he will continue to carry her through recovery and releasing all the stress this has caused to her and us.

We don't have another surgical follow-up until November and her surgeon said he would see Raylee during her oncology follow-up to make it easier for us. This means we have 1 month before our next follow-up and that one is with urology. An entire month without any hospital visits (of course unless Raylee gets a fever or ill) we are so excited, it has been a long time since we've even went a week without the hospital being part of our routine!

Doing Better than GREAT!

Yesterday we checked into Same-Day-Surgery, but not for a surgical procedure. Raylee was scheduled for a Cystrometrogram or CMG, which is a urodynamic procedure. This was a type of X-ray video to measure and analyze Raylee's bladder function. We were at the hospital for a long period of time. The test however is only an hour. This procedure is done in one of the surgical rooms so the staff have to scrub in, only this time they allowed Jerry and I to scrub in with them. We had to wear these white clothe like suits called 'bunny suits,' and the funny blue caps, Raylee thought it was silly. During the procedure we had to wear lead vests. There were around 6 medical staff. Raylee was lightly sedated for the procedure but she stayed completely awake and cried for most of it.

The results of the CMG procedure show that Raylee's bladder is larger than average but not too large that there's a health risk. It does function which is the news we wanted. I am so happy about this. This means no surgeries on her bladder. We will monitor how frequently she is able to potty and in a few weeks we have a follow-up ultrasound to ensure fluid us not backing into her kidneys. So far so good! She is doing great and I think her bladder just needed time to heal. This also means no more catheders! I can't believe how fast Raylee is bouncing back. She is sleeping better without any night terrors, which means everyone in the family is sleeping better, which means we are all happier! :) Raylee also is able to take a normal bath. Her first real bath since she was diagnosed was the other night and it lastest about an hour. She was really happy to be in the tub and splashed and kicked the water. She found that mermaid within herself again. I was soaked as well as the entire bathroom but I didn't care, she was having a blast! It was wonderful to see her happy and laughing which is something we are seeing more and more of each day.

Jorja went back to school recently. She will also start her cheerleading and dance classes soon. I am hoping these activities will boost her self-esteem as well as help her learn teamwork. She is excited for school but struggles getting out of bed. She isn't even a teen and getting out of bed for school is already a fight.

Anyway our prayers and thoughts are with those in the eastern states, to our family and friends there we hope you are safe and hope Hurricane Irene passes by fast with minimum damage. God be with you always.

On the Road to Recovery

Lately it has been difficult to blog regularly. I am so tired and exhausted to the point that my bones ache. Some of my own health issues already cause fatigue but only having an average of 4 hours a sleep at night is not helping matters; and these 4 hours are not consecutive. Raylee hasn't slept very well since we brought her home from the hospital. It is like having a newborn baby that can walk and talk....well actually run away from you, scream at you, push you away, and throw things at you. Raylee hasn't been very happy lately. Like I said before it is like she is having withdrawals and the bladder medication she is on causes problems sleeping. Jorja said the side effects of the medications should read, "Causes trouble sleeping for the entire family." LOL. I thought that was funny. We definately need to find something to laugh about these days. Raylee isn't on any medications right now except for her antibiotic, which she takes because her immune system isn't quite strong enough. Her oncologist said it takes at least 3 months for the bone marrow to heal after the last Chemo then her immune system should be back to normal. She doesn't want to take the medication and puts up a fight but I just tell her I know you don't want to take it but you have to. Then she usually takes it. We still mix them with highly concentrated snow cone syrup-Raylee likes the Grape, Wild Cherry, and of course Tiger's Blood flavors.

I was able to go to work this week. Raylee is recovering well despite the lack of sleep so I went to work. Jorja and Raylee are watched by their grandma Patty who they adore. Being with grandma and going to grandma's house has helped both of them. Little by little, day by day, Raylee does a little better at night. Let me try to explain how horrible her nights are. She would scream and cry loudy for about 2 hours for her mommy, daddy, and Jorja even though we would be right there. She would scream so loud I was sure the neighbors could hear her. She would usually finally fall asleep around 2 am and then wake around 4 am screaming and crying again. This meant if anyone in the family had fallen asleep at any time they were woken up by a cry that reflected terror. Raylee would be so scared and confused. She never wanted to sleep in her bed, she wouldn't want you by her, and she would run through the house until she found a corner to hide herself. We would panic because she would run, in the dark, carelessly because she was somewhat asleep still and we feared she was going to hurt herself. If you grabbed her she would kick, hit, and fling her body around. I never knew she could be so strong! She is stronger then me! If we tried to hold her she would scream, 'NO, Let me go!' If she could find anything she could lift she would throw it at you. It was just like she was possessed by a little demon child because this behavior is nothing like Raylee. She really is a happy child. She has a lot of anxiety and fear but it is starting to get better. She will now sleep in her bed (you usually have to lay by her until she falls asleep) and she isn't having the night terrors at the same degree as she did this last week. Jerry said 'There is light at the end of the tunnel.' Yes there is, but has been and still is a really long tunnel. I have never had my patience tested at this level but I know that Raylee will recover and be more like Raylee.

Yesterday Raylee had another ultrasound to check her bladder and kidneys. Last week fluid wasn't draining from her kidneys so her urologist wanted to check on them. They are doing so much better as there is only a little fluid in one kidney but they appear to be functioning and draining well. They taught me how to cycle her bladder. This basically is clamping the tube from her catheder every hour so the bladder can fill with urine and then you unclamp it so it releases. This will help the bladder muscles begin to fill full because when someone is cathed all the time like Raylee is right now, the bladder doesn't get the full feeling which it should. This will help wake up her bladder. Then next week we have a possible additional ultrasound and bladder test which is done through same day surgery because she will be sedated for it. We are hoping Raylle will not need the bladder test but if she isn't able to potty on her own she will. Either Tuesday or Wednesday the catheder will be removed to allow her body the ability to try to go on her own. :(

It definately has been a rough and long week but it was mentally good for my girls to spend time with grandma like they use to, and pychologically good for me to go to work. My co-workers and management have been so great to work with through this. Jerry's have been as well. We are really fortunate because I do know some people that when their child was diagnosed with cancer and they missed a lot of work they were let go. Although I was going to work with as little as 4 hours of sleep a night it really was energizing in a way.

Jorja is really excited and having trouble sleeping as well. Her's is because of the excitement of school starting next week. We met her teacher this last week and explainrf what Jorja has been through this summer and explained if she is really tired one day it is because her sister screamed all night. Her teacher is amazing. She told Jorja if she is ever tired she can go to the office to the sick room and take a nap, or, if she just needs to talk they can just talk. Jorja's class is the gifted class, although she isn't labeled a 'gifted' student she does really well in school. We are so excited for her to be in this class. Each student has their own computer on their desks with a flat screen monitor. It must be part of a pilot program this year. Jorja is trilled about this rare experience and will learn how to operate computers better. I am excited for her to simply be in school, be around kids her own age, and to be a kid!

This road to recovery is going to be a long bitter-sweet ride for everyone. It has been difficult trying to get our lifes back to normal. It is going to take as much energy to change our lifes again as it did to except Raylee's illness. At least we are not going through Chemo anymore---it definately could be worse! I would rather deal with a child suffering through night terrors then Chemo! I would rather deal with taking her for many many follow-ups then staying another night in the hospital. She is such a little trooper! It makes me feel so good inside to know that her recovery, and ability to defeat cancer, is inspiring and making so many people happy!

Bladder Problems

Friday Raylee had an appointment with urology. Her bladder is not functioning as it should. The appointment was a process and not a simple one; we were at the hospital for 5 hours. The appointment included ultra sounds of Raylee's bladder and kidneys. They showed fluid going into her kidneys which means her bladder isn't emptying on its own. She will need to have a catheder for a few more weeks. We hope her bladder just needs more time to heal. In two more weeks if she still does not have the capacity to potty on her own more ultra sounds will be done and a bladder test to see how much of the bladder functions. If it is not functioning she may need to have a catheder for a very long time if not the rest of her life. I had no idea there are people who have to cath themselves all the time. This is another thing we are learning about. The nurse practician who helped Raylee said some people are in accidents and their bladders are damaged permanently so they cath themselves every 4 hours. Hopefully Raylee's bladder will heal, she has been through enough. We stopped given her a bladder medication she has been on for the last few months. In reading the side effects (which is something I need to get better at) this particular medication may be the cause to Raylee's difficulty in sleeping and why she is easily agitated. These are side effects to this medication. Severe side effects are hallucinations. I feel terrible I didn't look at the side effects for this. Now we can be more understanding towards Raylee as she struggles through the difficult path of recovery. We have a long road ahead of us!

Oncology Follow-Up/CT Scan & Minor Surgery

On Tuesday Raylee had a follow-up appointment with oncology. These are not quick in-and-out doctor appointments like check ups, they last hours. First she has a CT scan which means she must drink about 24 ounces of contrast. This is a lot for her and any child at once. The last CT scan took Raylee hours to drink the contrast. Having her drink it is stressful as well because it expires in 3 hours so if the CT scan is not finished within 3 hours of drinking the contrast you have to start over. The contrast was a sinch this time! All because of that NG tube going in her nose to her belly. I injected most of it and she drank a cup full. An hour has to go by from when you start drinking the contrast, so this time when it was an hour she had the 24 ounces of contrast inside her. Also having this much fluid at once would normally kill Raylee's bladder and give her agonizing pain but this time around she has the catheder. So these extra tubes were used to her advantage and for a brief moment I was happy they were there. After the CT scan in Medical Imaging we go to the oncology clinic.

The CT Scan came back showing NO signs of abnormal tissues, NO signs of cancer NO signs of abnormal limph noids. This is such a relief. We weren't able to see the actual CT scan and we want to really bad to really believe the tumor is gone. The computer system that sends the CT images from the radiology department to oncology was down but Raylee's oncologist said we could see it another day this week (we have 2 other appointments this week on different days). Every time we have an oncology appointment they take urine samples. This is kinda hard because Raylee is in diapers. We were potty training her prior to her diagnosis but she struggled. When she as diagnosed we decided to wait for potty training and then we understood why Raylee had such a difficult time with it. To collect urine from a child who wears diapers the nurse places cotton balls inside the diaper. This means you have to wait and wait for them to pee enough into stupid cotton balls. This time however since Raylee has a catheder this was quite simple. Anyway I always wondered why they collect urine. It is because Neuroblastoma cells create a chemical that can be traced in the urine. Raylee still had this chemical in hers. It isn't something to be alarmed about-her oncologist said it often takes months for this chemical to leave the body after the cancer is removed. During all her follow-up appointments they will check the urine for this chemical. The oncologist also said it can take at least 3 months from the last Chemotherapy treatment for the bone marrow to be back to normal. Our next step in Raylee's recovery is to have the Broviac removed and an appointment with urology to find out what's going on with Raylee's bladder. I tried to schedule an appointment with urology and they turned me away saying general surgery could take care of her. I explained to them we were referred to them by Raylee's oncologist not her surgeon and they still wouldn't schedule an appointment and the individual became really rude to me on the phone. This was really frustrating but her oncologist took care of it. She called them and chewed them out. She wasn't happy and I don't know what she said to them but she said they will call you with an appointment and if it isn't within two day let me know and I will call them again and chew them out again. I love her oncologist-she doesn't mess around or put up with anything that doesn't go her way! Sure enough urology called with an appointment and this time they were super nice to me. Raylee can have the NG tube removed because she is eating and drinking really well on her own. The nurse came in to remove it and Raylee freaked out! She does not want it out! She screamed and cried and it was decided it would be removed on Wednesday when the Broviac is removed because Raylee will be sedated. One appointment down for this week two more to go.

Surgery.......................

On Wednesday Raylee had the Broviac or central line removed. This is the tube that goes into her chest to her heart. Since she isn't receiving any more Chemo she no longer needs this line. It is a quick minor surgery to remove the line. For a child, it is a surgical procedure because the line goes to the heart it could be life threatening if the patient moves during removal. This meant Raylee was sedated once again. This is the 7th time (and possibly not the last) sedation she has had since 5/24/11. The surgery was quick and perfect because the surgeon who removed the tumor also removed the Broviac. We were happy when told Dr. B was going to be Raylee's surgeon again. We really like him. When Raylee woke from the surgery she had a difficult time coming out of the anesthesia. She was like a demon child who was possessed; screaming, kicking, trying to run away, making loud awful screams, hitting, you name it and she was doing it. One of the hospital staff felt so bad for Raylee she gave Raylee a stuffed animal and Raylee through it at her while screaming at the top of her lungs. Then she wanted the stuffed animal so the lady handed it to her and Raylee hugged it and loved it for about 10 seconds and through it all her again as hard ad she could! It was quite embarrassing but what do you do? My child is tired of nurses, the hospital, medicines, and people in her face trying to make her feel better. She is only 3 and can't express her anger, fear, and anxiety well so now she screams and hits. She is very good at screaming! This was a really bad day and felt like hell. I do not wish for anyone's child to go through what Raylee did today; or for any parents either. I was pretty sure Jerry and I were both going to have a nervous breakdown by the end of the day. We had to force her in her car seat because she didn't want to leave and she screaed all the way home. I am sure if you were in the car next to us you probably could hear her. I decided I need a pair of ear plugs because they are stil ringing. Two appointments down for the week, one more to go.....it feels like this week will never end :(

To make matters worse Raylee isn't sleeping well. She falls asleep around 2 am, moans and groans in her sleep, wakes up crying a lot, and will not sleep in her bed. She would rather sleep on the floor. I feel bad for her and lack the patience needed to cope with all this.....it's either lack of coping or lack of sleep. We kinda think she is having withdrawals from all those damn narcotics she was on for pain....glad we are done with those and that they are long gone. I hated having those meds around.

To make even more matters worse, Jorja almost burnt our kitchen down the other day. She was using the microwave to cook Mac 'n Cheese and forgot to add water. Black smoke went everywhere pouring out of the microwave and she is saying 'mom, mom' in a way that didn't reflect an emergency was taking place nor did she stop the microwave. I was in another room saying 'what?' She says, 'ummmmm I need help with the microwave.' By this time I could smell the smoke and ran into the kitchen and opened the microwave door. Our kitchen still smells of smoke. It is a blessing the noodles did not catch fire, the microwave didn't catch fire, or our house. The noodles were black and almost a dust. The little microwaveable container the Mac 'n Cheese comes in was disintegrated. Jorja can no longer use the microwave by herself and she had a tough lesson on how to call for help :) We do not need to experience our house on fire, especially not now.

Raylee's Home

Great news! Yesterday afternoon Raylee was discharged from the hospital. We didn't think the surgery team was going to let her leave. Raylee's surgeon went on vacation days ago and gave us his personal cell number and told us to call or text him if we had any questions or concerns. We almost called him because it seemed like every morning this surgery team had a different reason why Raylee wasn't ready to come home. However they finally discharged her so we didn't need to call him.

Raylee came home with the NG tube and feeding. She is connected to it 24 hours a day. One of the home health nurses came and showed me how to operate the pump and change the tubing and food bag. It hangs on an IV pole in our home inside a little backpack designed for it. We can also go anywhere since it fits snug in the backpack. It is actually really easy to do. It is another thing I never thought I would ever need to worry about let alone know how to do. Raylee has the catheder still and will have it at least until next week.

We have more great news! Yesterday morning a board of oncologists had a meeting discussing Raylee's treatment and they recommend NO MORE CHEMO! We are so happy about this! They recommend extensive monitoring which means CT scans ever 3 months and probably blood work. Our first follow-up CT scan and clinic (oncology) appointments are next week. This also means Raylee's central line will be removed. This must be removed by a surgical team. The central line was left in for a few more days until this scheduled CT scan is completed so Raylee doesn't get an IV to inject the dye, it will save her from getting poked. Also we will have an appointment with the urologist who will run some tests on Raylee's bladder to ensure there's no chronic damage from the tumor.

Follow-up appointments will become part of Raylee's life and ours. I feel like I will anxiously.wait for them because I will always fear the cancer will return; especially if she gets a belly ache I will be scared it's back. I want to see the CT scan next week to really believe that it is gone. The last 3 months feel like 12 months. It is amazing how you lose track of time.

I am so proud of Raylee for being a fighter and having her strong will. She is a trooper, a little cancer fighting soldier. My heart just aches for all the other little troopers who are going through this, especially the ones who will leave their families and friends to fulfill a purpose in Heaven. What sweet angels they are. I never thought this day would ever come. It is a miracle we are done with Chemo because normally children with stage 3 Neuroblastoma receive 8 rounds, Raylee had 2. Also some children in this intermediate stage need 2 rounds of post surgery Chemo. I was scared Raylee would receive more. The grace of God is with us and His will was that Raylee would survive this with a quick treatment plan--well quick compared to most treatments, it didn't feel quick to us. Through Jesus Christ this was possible and I don't know how to thank Heavenly Father for allowing His beloved son to carry Raylee through this, because we know He did. I don't know how to thank Him for all of you for being our advocates and being there for us, or for all the thousands and thousands of prayers that were for Raylee and my family. The only way I know how to show my thanks is to allow this ongoing experience to change me for the better. There were times I was mad at God for allowing my child to be this ill and the only way to make her better was to posion her and have surgery. However, I know in all things there is a purpose and Raylee must have been extremely valiant in the pre-existance to be able to handle such an illness as a child. The anger I felt is normal and probably healthy in some way, it may show itself at times as I still have a lot of growing and learning to do from this experience. I want you to know however, that I never did stop relying on Him no matter how bad some days were, and I always knew that His will would be done regardless if it was what I wanted. One thing I know, I couldn't have ever gone through this alone and my family couldn't have either; my strength and faith isn't strong enough. Because Raylee is so little I often think this is more of a learning experience for Jerry and I than for Raylee. This great news hasn't sunk in all the way, I am sure once Raylee doesn't have all of these tubes hooked to her (she has 3) it will feel more real. Also once I see the tumor free CT scan, I can celebrate and my heart will be at ease. She has at least 2 more months to go before her immune system is considered normal. So once it's normal we need to have a huge celebration! :)

A Brighter Day :)

Wow!! Compared to the last few days Raylee is a completely different child, she still isn't herself but she is a lot happier than she has been. The feeding tube has helped so much! She is more mobile and doesn't have as much pain as before. She also played with cars and Legos with her sister on a blanket on her room floor. She ate more today than she has in a long time. We took her to the cafeteria and let her pick what she wanted. She picked a banana, grilled cheese sandwhich, a Coke, and Cheetos. We are hoping she is released tomorrow. I am just happy she finally smiled!

Raylee's oncologist saw Raylee in the hallway today and said tomorrow the Board (a board of oncologists) are meeting to discuss the next step in Raylee's treatment. So we should have some news soon---------we are praying and crossing our fingers for NO MORE CHEMO!!!

Post Surgery Blues--Extended Stay in the Hospital :(

Raylee is really was and stopped eating and drinking completely. Yesterday we struggled with getting her to eat and it got worse and worse. We had thought she would be released on Monday because everything was going better than expected but that quickly changed. Yesterday morning she was fine ate Fruit Loops for breakfast and chocolate pudding, and even painted a cape with the local police department who had several officers and dispatchers there to paint pillow cases or capes with the patients. Then in the afternoon Raylee wouldn't eat or drink and was really angry and depressed. She eats like a bird normally but this was worse. She disliked all the medical staff telling them to leave her alone as she pushed them away and wouldn't look at anyone including me.

This morning she hid herself in her blanket cried when I opened the shades on the window and didn't want to do anything. When the nurses or I mentioned food or drinks she screamed 'no' and cried. This was really frustrating because the only thing she needs to do to go home is to eat and drink and she is refusing to do this. I felt like it was my fault because perhaps I was pressuring her too much or failed in some way because she seems mad at the world. She loves Lunchables and has fun eating them. Jerry stocked the patient fridge that's in the nurses station with Lunchables and Capri Suns because the hospital does not carry these items. Raylee didn't want anything to do with them which isn't like her. I have never seen her this way. I feel bad for trying to get her to eat because now that I think about it, I am sure her stomach is hurting especially with all pain meds, antibiotics, and bladder relaxing meds she is given....she is also on a laxative....poor baby girl. The last thing I want to think about when I don't feel good is food. The surgical team visited Raylee this morning and said she would be in the hospital at least a few more days because she isn't improving in eating and drinking. They come in the room around 6:30 to 7:00 am and it is difficult to grasp anything they say that early especially when your not getting more than 4 hours of sleep a night, and those 4 hours are not consecutive. At noon the surgeon filling in for Raylee's surgeon came to talk to me about giving her a NG tube or feeding tube for nasogastric feeding. He said she isn't getting the nutrients her body needs to heal and to wake up her tummy and intestines. I just cried. I felt so bad for her. The nurse had the oncology social worker who works with my family come and talk to me. She said sometimes when children are in he hospital they feel like they lost control of so many different things that they stop eating since it is one thing they can control. She said the feeding tubes take children time to get use to but it would help her get over this stumbling block in her recovery.

Raylee had to receive a medication prior to the placement of the feeding tube. This medication was a type of setative; it didn't put her to sleep but made it so she wouldn't remember the placement. They insert the tube up through the nose and down the throat to the stomach. Raylee screamed 'no' and cried during the placement and I had to hold her down. Her heartrate and oxygen levels were monitored closely for 1 hour to ensure there were no side effects from the setative or problems with the feeding tube. Once Raylee calmed down they began pumping the 'food' into her tummy. The food is basically an IV bag full of Ensure. Raylee fell asleep and the nurse told me I also needed to go get something to eat because I hadn't left the room all day. She basically lectured me on how I need to care for myself and eat too. So she said she would watch Raylee, however minutes after I left the room Raylee pulled the tube out of her nose. I shouldn't have left. A few hours later 3 nurses put it back in and held her down. It was a really bad day full of anger, frustration, and giving up on trying to convince Raylee to eat. It is possible we could go home with the feeding tube and feed Raylee through it. She can eat and drink through her mouth with the tube still inserted. Raylee's oncologist is convinced if Raylee were home, she would be comfortable and eat on her own and if she were her patient right now she would send her home, but she isn't her patient right now---she is surgery's patient. Anyway the postives things about having a feeding tube (we have to look at the good things in this to keep us going)are, Raylee is getting nutrients that her little body desperately needs. Like one of the nurses said she is probably a little malnutritioned. Honestly Raylee hasn't been able to eat since last Tuesday prior to surgery which was over a week ago. Another positive which we are thrilled about is all the oral medications Raylee is on, which is about 4 of them, can be inserted through the feeding tube and Raylee has no idea she is getting medications. This will give her a few days break without the fight and struggle of getting her to take oral medicatins. Especially since prior to giving the pain medicine she needs to eat something so her tummy isn't upset. She also gets a break from her parents and the medical staff trying to convince her to eat or drink something. Eating and drinking are just simple things, especially when that is the only thing from keeping us from going home right now; however for Raylee, eating and drinking seem to be extremely difficult and the last thing she wants to do.

Raylee--Not Feeling Well

Early this morning the surgical team came in and said from a surgical standpoint Raylee is doing well. They felt her tummy and left...then Raylee started throwing up again right after they closed her door. The techs came in and cleaned her and her bed up. I am not sure why she is vomiting. The charge nurse said the pain med she is on, Oxycodone, can cause nausea especially since her tummy was empty all night. She had just had Oxycodone before she threw up. They were able to give her a dose of Zofran.....which is her Chemo antinausea med....feels like we are going through a Chemo treatment this morning :( Raylee didn't have the best night. They had to flush her catheder because it wasn't working properly and hook her fluids up again. We are also back to the Morphine. I was hoping she might be able to go home today but now I don't think that is possible.

Raylee is starting to lose her eyelashes and eyebrows. It's amazing how these features really bring out a persons face and personality. She just looks different with them thinning. She is still super cute! The nurses just love her especially when they have to do something like check her blood pressure and she says 'thank you' after they are finished. Everyone tells her she is cute....her oncologist calls her 'Gourgeous.' I hope it makes Raylee feel good.

SuperSibs!--Jorja

Jorja is a SuperSibs (Super Important Brother or Sister!). She is part of a national support group for children who have a sibling with cancer. Check out this program it is amazing! www.supersibs.org

The following information was taken from the SuperSibs web site:

"Ensuring that siblings of children with cancer are honored, supported and recognized so they may face the future with strength, courage and hope."

"When a child is diagnosed with cancer, everyone in the family needs healing, including the siblings. SuperSibs! is a national nonprofit organization ensuring that children whose brothers and sisters have cancer are supported, honored and recognized to help them face the future with strength, courage and hope."

We are excited for Jorja to part of this program. She will receive fun things in the mail from them. The hospital also supports 2 annual events for SuperSibs. We are excited to find out what they are! This has not been the best summer for Jorja. She often has extra chores and is burdened with one or both of her parents always taking care of Raylee, which means often at the hospital. She often feels jealous, lonely, and forgotten. Jorja is an amazing child...and we are trying so hard to make sure she can be a child and just play and be herself! She has always been protective of her little sister but she is now more protective then ever. I think she will always be this way for the rest of their lives. On nights when I am home with Jorja it is very difficult not to have both of my children with me. I sometimes can hear Raylee say "mommy" in another room. I know it is just my mind and heart playing tricks on me but I miss her and Jerry when they are at the hospital. My home is not complete or the same without them there. And when I am at the hospital with Raylee, part of me is away at home with Jerry and Jorja as it is an uneasy feeling being away from home.

Next summer we are definately making up for our lack of FUN!!!

HOPE

"There is no medicine like hope, no incentive so great, and no tonic so powerful as the expectation of something tomorrow."
- Orison Swett Marde

Raylee is now a HOPE kid and Jorja is a HOPE sibling. Please check out this amazing program on www.hopekids.org. This is an organization found in 4 states Utah, Texas, Minnesota, and Arizona.

A while ago when Raylee was feeling okay we were able to see the new Cars 2 movie with the HopeKids--when they go to movies the movie is called a HopeFlick. Recently Jorja was able to go the Planetarium and watch a video called Attack of the Space Pirates. We are very excited to be able to be part of this program. All family members are given a HopeKids tee shirt. The front has the HopeKids logo and the back says--Got Hope?

"Why HopeKids? Because it is necessary. There is a need to keep kids focused and thinking about the future and looking forward to the future. The more positive their attitude, the better their chance of recovery."
- Tom Lehman, HopeKids Honorary National Chairperson

Preliminary Report-Neuroblastoma still in Tumor :(

Raylee is moving forward with recovering from surgery. The afternoon after surgery they moved her from PICU to the CSU (Children's Surgicial Unit). She was doing super and the charge nurse in PICU said they love it when kids have a short stay in PICU. In CSU we have moved rooms 3 different times. The first time was because the patient next to use had a weird bacterial thing going on. The second time was because they had sent 15 kids home from CSU in one day and they closed the pod we were in, in order to keep the nurses close to the patients they moved them closer together. I insisted we were not by the child with the weird bacterial thing because of Raylee's low immune system. They told us they would give us a really nice, big, and newer room by the chidren who are recovering from heart surgery. They said this pod has no kids with any infections or bacterial issues. The room is one of the best we have had. Raylee has been admitted 5 times now since the end of May, we have stayed on every floor and in almost every unit now....except the infant and newborn units of course. We are happy we weren't placed in the ICS unit (Immunocompromised Services) this time, as it really does feel like you are in lock down there.

Yesterday they removed her IV from her hand and began using her central line. They also removed her cathedar and epidural. She also was able to begin eating. Her diet so far has consisted of Gold Fish crackers, Oreos, and chocolate milk. Her surgeon came to visit her and brought his children to meet her. It was really awesome. Raylee looks away when he enters her room and she will not talk to him. (She is this way with all the staff here and gets upset when anyone with scrubs on enters the room--even the housekeepers because they wear scrubs.) Eventually as she gets older I am sure she will appreciate what he has done for her. He is an amazing surgeon! We couldn't be happier with the results of the surgery! The surgeon himself said it went better then he could have imagined!

The surgeon had received a preliminary report from Pathology and the tumor did show neuroblastoma cells. This means the Chemo she received did not kill all the cancer cells. We were hoping it did since the tumor sample reviewed during surgery (frozen sample) showed no neuroblastoma. Since there is neuroblastoma in the tumor still....this could result in at least 2 more rounds of post surgery Chemo. The surgeon hopes since he did remove all of the tumor that she does not need any Chemo--this is what we are hoping too. This is up to Oncology to decide however. We will meet with them soon to know what the next step in Raylee's treatment plan will be. At least whatever it is, it will be so much easier to deal with than the thought of her still having that tumor inside her. I really hate that thing as it was trying to kill my baby!

Last night Raylee experienced difficult going potty. Her bladder has been stretched and is enlarged. She will have an appointment with Urology in a few days. Right now she isn't able to go on her own and they had to give her another cathedar. I feel really bad for her and hope this heals. She also vomitted :( and no one knew why, maybe she ate too much. She wanted pancakes and sausage so we ordered pancakes and sausage...she had three small bites of pancakes and a few bites of sausage. The surgerical team who examined her this morning said during surgery her bladder was moved around a lot to resect the tumor and it takes a long time for it to heal. All we can really do is wait. We hope her bladder goes back to normal and does not have permanent damage. We also hope she does not get an infection, UTI, due to having a cathedar. An infection may extend her hospital stay or, if she is released it may mean once an infection reveals itself--she is admitted again because of her low immune system--typical for oncology patients.

Raylee you are a fighter....it is so difficult to see you go through pain and take your first steps after the surgery. It is difficlt to see you miserable from being ill. But your doing this so gracefully and with so much will!! And you are doing this with strength and endurance. You are such an example for everyone to know that LIFE is precious and worth fighting for! I am starting to understand more about why Christ said to be like a little child.