On Sunday, January 21, 2007, our sweet Bailey went to play with the angels. She is now at peace in the loving arms of Our Heavenly Father. This has been a heartbreaking journey since her diagnosis March 22, 2005, at age 7, with an inoperable brain tumor.
   A Celebration of Life Mass was held Friday, January 26, 2007 at Queen of Peace Catholic Church in Salem, Oregon.

   May God bless you for your constant faith, unwavering love, and generous hearts. We will be forever grateful to you for continuing to pray for Bailey and our family, and for the comfort, strength, encouragement, and hope you shared with us during this most difficult time.

June/July 2006
Dear family and friends,
    We want to give you an update on Bailey. Since coming home from Emanuel Children’s Hospital last summer, Bailey made leaps and bounds in her recovery and progress. She began to walk a lot on her own and at one point could run several steps. She attended school enjoying the company of her friends and doing well academically. However, this May we noticed Bailey started talking softer and was tripping a bit, so we took her to see the doctor. Hoping it was something minor, like a plugged shunt, a MRI would reveal a more difficult challenge. We learned a cyst was growing on her tumor and affecting her right side mobility and speech. We consulted with local neurosurgeons about what to do, but because of the risks involved with the cyst’s close proximity to the brain stem, doctors were not willing to operate. We sent Bailey’s MRIs to the best neurosurgeons in the country, and the feedback was the same. They could not operate or do anything.
    Rather quickly, Bailey became less and less mobile. Then she lost her abilities to walk and talk. We knew we needed to do something fast and found a doctor willing to help by offering alternative treatments. The hospital did a microscopic blood test and reported they found an abnormal amount of fungus in Bailey’s blood as well as Lyme Disease, which weakens the immune system by making it work overtime. She started with various enzymes drips to fight that, and has had fresh juices and vegetables pumped into her stomach for nutrition to keep her healthy. Her body may be able to fight this if we focus on improving her immune system.
    Throughout June we battled all of this in the hospital. Bailey was basically in bed, unable to walk or speak, receiving her treatments while we sat by her side. She communicates through the use of a keyboard and every day she would tell us she wants to go home. Bailey began to develop bedsores so we moved her more frequently to remedy this issue. Many times we’d take her outside to lie out under an umbrella in the grass to get some fresh air, and she’d love that. She can’t go too far from the hospital though because she was on several drips all day long.
    In addition to the enzymes and fresh fruits and vegetables, Bailey received brain and spinal cord stem cells that are go to her brain stem and spine to repair the damaged areas. She has taken a new drug called Cesium and we are waiting for the results. She is also taking steroids which make her hungry, and at times irritable. She has not been sleeping well — for seven days she barely slept at all. She is exhausted, but now has taken some natural extracts to gently help her sleep. We have been awake at her side at all times. Each week her blood tests looked a little better, but it is a slow process.
    After nearly six weeks away, we returned home. Bailey is happy to be at home to enjoy her family, friends, animals, and swimming pool. The first thing she did when she got home was pick out a new Chihuahua puppy and name her Fudge Bar. Little “Fudgey” stays by Bailey’s side at all times and brings her immense comfort and joy. Fudgey has even been in the swimming pool with Bailey!
    We believe Bailey is getting better. She is being very strong and tough, we are so proud of her.
    Thank you for your continued thought and prayers — your support keeps us strong each day.
Love,
John, Pam, Bailey, Amanda, and Marissa

April 3-16
Bailey has not been as alert as before, probably a result of not eating enough. She is not gaining weight like she needs to. It is so hard to get her to eat food when she refuses. Pam is searching for and trying out new recipes. Bailey is still attending school and is looking forward to her First Communion in May.

    On Saturday, April 8, the University of Oregon track team hosted the 19th annual Pepsi Team Invitational. The University of Oregon Student Athlete Advisory Committee has taken Bailey under their wing and declared her their UO Duckling. They have been sponsoring events throughout the school year helping to raise funds for Bailey and her family. This meet was one such event. They raised funds for her at the stadium gates and announced her four times throughout the day.
    It was a very special day because Amanda, who is a UO senior, runs the 400 hurdles. Amanda writes “Bay” on the outside of her thumb when she runs because it gives her inspiration and motivation to be strong and push forward. Amanda’s friends and UO star athletes Tommy and Jon took a lap around the track, carrying Bailey between them presenting her to the crowd. Bailey loved it! She waved to everyone in the stadium and smiled while the whole crowd cheered! She felt very important.
    Here’s a link to a very special article about Bailey and her sister Amanda that appeared on the 4/14/06 Sports section front page of The Register-Guard (Eugene, OR).
    That day was a very, very special moment for all of us and we are very grateful to the UO for organizing it and for taking Bailey under their wing, and also to The Register-Guard for sharing Bailey’s story.
    We also ask that you might keep another little boy, Taylor, in your payers. He has the same tumor as Bailey and is going through a pretty rough time right now.

Feb. 20-April 2
Bailey started going to the chiropractor and at first she wasn’t sure about it. She didn’t like it when he adjusted her neck because she said it hurt. She does like the doctor though; he is very good with her. She is going twice a week. She cried the second time she went because she was afraid it would hurt again. He told her it might hurt the first few times because her neck was so tight, but after that it probably wouldn’t hurt. That is exactly what happened. She enjoys going now and is very comfortable with the doctor.
    She is done going to the acupuncturist now because the lady she was seeing isn’t in Salem anymore. She is still going to physical therapy twice a week and speech therapy once a week. Along with the chiropractor appointments and her tap class she has a very full week of activities!
    Bailey had another MRI and lab work done. Her lab work came back looking excellent and the MRI showed no growth in the tumor. That is good, now we just need to shrink it. The doctors are all amazed at how well Bailey is doing and tell us to keep up whatever it is we are doing because she is doing so well.
    The natural doctor has started Bailey on some more powerful enzymes and anti-cancer products. When we first started these products Bailey had a hard time and was throwing up every morning. The doctor said we need to go slow with the pills only give her half and slowly go up. This seemed to help and she isn’t getting sick anymore.
    For Spring Break, she went for a weekend girls-only trip to the beach with her mom, aunt, and girl cousins. They had a blast although Bailey was pretty worn out at the end of it.

Jan. 30-Feb. 19
Bailey’s acupuncture isn’t going very well; she hates going and begs Pam not to take her. We talk to them about this and they say to come in and talk and we will try to figure out what to do. We found a new place to take Bailey for physical therapy and speech therapy and we are excited to see how this will work out and if Bailey likes it. Hopefully it works out better than the last place.
    Bailey lets Pam and John know every day that it is almost her birthday! She will be eight years old and has decided to have a slumber party with friends! She is very excited and can’t wait, and is counting down the days.
    We went to Bailey’s first physical therapy appointment and it was wonderful. She loves the therapist and is very excited because she will get to use the heated pool. She met the speech therapist and she really likes him too. We are glad we found this place and now Bailey is excited to go to her physical and speech therapy appointments!
    We have been in contact with another couple who have a little boy named Dylan with the same tumor and is doing exceptionally well. We have compared our children’s protocol and they seem to be very similar. This makes us feel good since Dylan has had some tests that show he has no cancer and a very good sign his tumor could be gone. We have been in contact with a little boy and his mother who became good friends while we were in Houston. Micah had many tumors in his head and they are now all gone. He is also doing very similar diet and protocol as Bailey. We will be adding a few new things to her diet. It is nice to talk to parents who are going through the same situation as we are and share with each other our children’s treatments and if we have found anything new.
    Bailey has gone to a different acupuncturist and is now with a woman who does touch therapy with her hands and it seems to really relax Bailey. She likes this much better. The therapist is going to teach Pam how to massage Bailey’s stomach and relax her and make her feel good. We will continue to meet with her. Bailey will start seeing a new chiropractor next week.
    Bailey had a wonderful birthday! We all made it though the slumber party and all the kids had a good time. It is so good to see Bailey out of the wheelchair and out playing with her friends again.

Jan. 9-29
Bailey has had a good couple of weeks. She is having a great time at school, especially now that she doesn’t use her wheelchair, which means she can interact more with other kids a little easier. At recess she was Hula Hooping! We couldn’t believe it! She goes to music class and dances with the other children. She is so happy doing these kinds of things again.
    We decided to get her hair trimmed up, and it ended up being cut pretty short! Her new short and sassy hair cut is cute, and she does not have any bald spots left. All of her friends at school loved it. Bailey is so lucky to be at the school she is attending. All the other students are amazing with her and are always there to help her. Her teachers and all the staff have made her return to school a very happy and positive experience. Everyone is so supportive and we would like to thank you all from the bottom of our hearts because it has made a big difference.
    Bailey is doing better with her eating. She is trying hard to eat healthier foods and more of them. We are sure the natural supplements, enzymes, and sugarless foods are helping Bailey improve. She has also started seeing an acupuncturist, but at this point they are just doing massage and moxa therapy. She has only gone twice so we’re not sure yet if it is helping her, but it may be good for circulation in her hands and feet. We will try it for a while and see. We may also start taking her to a chiropractor specialist. We have heard that children with tumors need to be in perfect alignment to help them get better.
    Bailey was very excited the other day when she walked up the stairs to the bedrooms by herself, without any help from her mom or dad or sisters! This is an important moment in her recovery. She is telling everyone she can walk up the stairs by herself, she is so proud of herself. All these accomplishments are wonderful. She has a happy face when she accomplishes something new, however small, and we can see how strong she is. She is truly and amazing little girl.
    We would like to thank all the volunteers who have been Bailey’s angels from Audrey’s Umbrella. All the gifts and letters you send to Bailey make her so happy. Her face lights up every time she gets something in the mail from you. You truly are making a difference in her life right now.

Jan. 2-8
Bailey started off the New Year determined to eat more (most New Year resolutions are to eat less!) and to get totally out of her wheelchair. Normally, back at school, Pam wheels Bailey into her class and helps Bailey get into a chair to sit at her desk. She doesn’t use her wheelchair again until she goes home and Pam wheels her out. By the end of this week though, she isn’t using her wheelchair at all at school! She walks to all of her classes and lunch using her cane. We are so proud of her! And she is so proud with herself too.
    She also started back up with her tap dancing class. She can’t dance like before, but she tries really hard because she loves to dance and she loves her dance teacher so much too. Her positive, determined attitude is amazing all of us right now.

Dec. 26-Jan. 1
Bailey had a wonderful Christmas! It was a little draining though, so she spent the rest of the week relaxing and getting over all the excitement from the parties and family gatherings over the holidays.
    Bailey is going through a hard time with her eating again. She isn’t eating enough food, but she promises her mom and dad she is going to try harder to eat more.

Dec. 19-25
Bailey and Pam went to the mall to visit Santa. When they got there Bailey knew this was the real Santa. He had a real beard. She was really excited to have met the real Santa!
    Bailey is so excited for Christmas. She is walking more and more with her cane. She is determined to get out of her wheelchair for good! Bailey had a great time visiting with family visiting in town, and even opened a few of her presents on Christmas Eve. She is so excited!

Dec. 12-18
Bailey was fitted for new braces this week. She only has to have one brace for her left leg, and she needs it to keep her ankle together and to keep her from throwing her knee joint back too far while walking. All tests for her lab work this week came back looking better, and she doesn’t have to come back for another three weeks. She also got a new Mickey for her stomach. We found out that it didn’t just have a hole in it, it was completely blown out. She was happy to have a new one put in.
    She is looking forward to Christmas and all the parties that come with it!

Dec. 5-11
We got our Christmas tree and Bailey wants to help decorate it. She won’t let Pam or John help her walk to put on decorations, but wants to do it all by herself. She is determined to be walking completely on her own by Christmas.
    She is doing great in school. The physical therapist came to work with Bailey on her walking. She had Bailey put on her braces and Bailey cried the whole time they were on. She says they hurt her feet and she hates to wear them.
    She had her Christmas recital this week, getting all dressed up in her Christmas dress and getting her hair curled. She stood up with the rest of her class, using her walker, and sang her heart out! We are so proud of her! It was wonderful.
    At the end of the week, we took Bailey to the doctor to have labs drawn. Unfortunately her white blood cell count was very low. They want her to come back next week for more tests. Her rehab doctor watched her walk and said she could probably stop using the walker and graduate to a cane now. He doesn’t like the braces and is going to have some new ones made.

Nov. 28-Dec. 4
Bailey is excited to be back at school this week. All of her classmates are also happy to see her back. She gets right into her schoolwork and catches up like she was never gone. The occupational therapist comes in the beginning of the week and Bailey seems a little weaker since she has been sick. She is more determined to walk, so she gets out of her chair and walks from her classroom to the library. The speech therapist comes to see her and has her working on blowing a horn, and we count how many times she can blow and make sound in a row. She gets better every day.
    At school she is getting out of her chair and walking in the halls. She goes to music with her class and finds out she has her Christmas recital next week and the other children have been practicing their songs and already know the words. She is worried she won’t learn the words, so Pam gets the songs to take home so they can practice and Bailey feels better. She makes it through the whole week of school! She ends the week by going to the Fire Station for holiday activities and to get her picture taken with Santa. She also gets a ride in the fire truck, sitting in the front seat and running the sirens.

Nov. 21-27
This week, family came in from out of town to celebrate Thanksgiving. We were all ready to eat dinner when Bailey started having pains in her side, and started crying. Pam, John, and Bailey go upstairs until she is feeling better. She cries for a long time upstairs, but finally the pain goes away and she comes down to join the family. She has a nice time visiting with everyone. She loves getting together with her extended family. She also loves her sisters so much and was so happy to have them home all weekend. She is looking forward to next week, when she’ll be back at school.

Nov. 14-20
Bailey is doing much better this week, and hasn’t thrown up for days. Her appetite is back and she is able to keep everything down. Midweek she visited her doctor for lab work and to share the great news of gaining four pounds in one week! We are all so proud of her because she increased her weight on her own, without the feeding tube. Her labs came back and all of her counts look good. She is laughing and joking, and feeling much better. The doctors also confirmed through labs that she successfully fought off the viral hepatitis. She continues to eat and recover from last week’s illness, nicely.
    John and Pam decided not to send Bailey back to school until after Thanksgiving. They want to make sure her immune system is as strong as it can be before exposing her to others who may be sick. During this time, they help Bailey focus on recovering and getting stronger, eating healthy, and doing more exercises and walking to get out of her wheelchair.

Nov. 7-13
Bailey sees her Portland doctor this week for an MRI and ultrasound. She does well through the MRI but screams 45 minutes through the ultrasound. MRI results show her tumor hasn’t grown and remains stable. Her ultrasound shows an enlarged liver and doctors believe she has viral hepatitis, a type of virus that makes the liver swell up and stop working well. The doctor recommends a feeding tube with PediaSure to help her gain weight, but John and Pam don’t want to do that and neither does Bailey.
    The home health nurse came to show John and Pam how to hook up the feed bag and Bailey cried and cried because she doesn’t want to be hooked up to it. John and Pam tell her they won’t hook her up to the feeding tube is she eats on her own, so Bailey starts eating that day. They agree it’s much better for Bailey to be eating solid food. She is eating much healthier now and feeling better too. She is being very strong.

Oct. 31-Nov. 6
This week was very difficult. Bailey is sick and can’t keep any food down. Each time she eats something, she throws it back up, and John and Pam get up with Bailey four times a night. She also continues to be very tired.
    Her doctors prescribe some medicine for her stomach pains, but it only seems to make things worse — she cries for five hours straight, and feels terrible.
    By the end of the week, she was not throwing up as much, but she doesn’t want to eat anymore because she is scared it will make her sick.

Oct. 24-30
Bailey is doing very well in school. Her teacher’s evaluation made John and Pam very happy. Pam is trying to leave Bailey with her school aide for longer periods of time now, but Bailey gets upset when she leaves. She tries to calm Bailey down and explain to her that she might have to be gone for longer periods of time. Bailey was tired after all that, so they went home and she took a 4-hour nap.
    This week Bailey went to the pumpkin patch with her classmates, which was really exciting! The weather was cold and windy, but not rainy, and Bailey fed goats and bunnies, and sat in the nuthouse. She went on a hayride and picked out a pumpkin to take home. She fell asleep on the drive back.

    John, Pam, and Bailey went to the school carnival to play games and win fun prizes. Bailey won First Prize for her Dorothy costume! Here is a picture of the three of them in their Halloween costumes!

Oct. 17-23
Bailey is so excited because she is going to the Lion King with her mom and dad! They went to the play, in thanks to a generous friend, and had an incredible time.
    Pam finished Bailey’s costume for Halloween and she looks just like Dorothy, It’s awesome! They went out to dinner with Pam’s girlfriends; Bailey really loves to go out for dinner with her mom and her mom’s friends.
    On Wednesday Bailey is very excited because she gets to go with some classmates in a limousine ride to lunch! Bailey and the other students won the limo ride for selling the most magazines as part of a school fundraiser. She has a great time in the limo, but doesn’t each much for lunch.
    Bailey hasn’t been eating very much this week, so she went up to her doctor for another lab test. Her tests came back looking good with her counts back up. Pam had a meeting with Bailey’s school’s special education teacher and school nurse to create a schedule and curriculum that will best meet Bailey’s needs at this time.
    This weekend, John, Pam, and Bailey got out of town for one night and went to the beach. They went to Chinook Winds in Lincoln City where John was booked to drop a 1,000-pound pumpkin traveling 34 mph on a 1994 Camaro, as part of the casino’s big Halloween event! Bailey loves riding in the crane and watching her dad work, especially when he’s dropping a giant jack-o-lantern from high above. Crowds of people were there screaming and cheering and then the countdown began, John made the drop and there was even more noise from onlookers. It was so much fun for everyone! Afterwards Bailey went swimming with Pam in the heated pool and loved getting in the water! That night they all went out to dinner, but Bailey didn’t eat very well.

Oct. 10-16
Bailey started the week out feeling great, with energy and excitement about going to school. She decided on a Halloween costume: Dorothy from the Wizard of Oz!
    Her stomach started hurting every time she eats now, and mid-week Bailey goes back to the doctor for more lab work. The lab work comes back looking pretty good, showing her counts going up. This week her appetite improves slightly and she begins to feel a little better. She is doing more walking with her walker, and is working very hard at it — sometimes she even walks entirely on her own! This is truly amazing and we are all so proud of her.
    She continues to do very well in school; she had a big spelling test and only misspelled one word. She also went to the Post Office for a school field trip, which was a lot of fun.

Oct. 3-9
Bailey starts the week not feeling very well. Her stomach hurts whenever she eats. In the middle of the week she goes up to Portland to see her doctor and have some labs taken. The results were not very good. While her platelet count was way up, her white and red blood cell and hemoglobin counts were all very low. She will come back on Friday for another lab test, and if her counts are still low, she’ll have a blood transfusion.
    On Friday labs were taken, and her counts had gone up as hoped so she did not have a transfusion. She will have to come back up to Portland again next week though to make sure her counts continue to go up.
    At the end of the week, Pam, Bailey, Amanda, and Marissa went shopping for Halloween costumes, and then went to a family dinner. Bailey had a blast when the music was turned on and everyone started dancing. Bailey had a great time, and was right there dancing and laughing.

Sept. 26-Oct. 2
Bailey started her week with a doctor’s appointment to find out what her blood counts are this week. Her lab reports were not very good, showing that her counts are way down so she can’t start chemo. Her doctors want to do a bone marrow biopsy, as they believe that the previous treatments of chemotherapy have affected her bone marrow. Bailey needs to be watched very closely for fever and infections. This probably explains why she has been so tired lately, as her body is not rebounding like it should.
    Pam and John are following nutrition recommendations designed to help build up Bailey’s strength and help her withstand the effects of her cancer and its treatment. But mealtimes are now more challenging than ever due to Bailey’s treatments and their side effects. Some days she won’t want favorite foods because they don’t taste good. Other times, she will be able to eat a dish that couldn’t be tolerated just the day before. She often complains that nothing tastes good and she refuses to eat. It’s very frustrating.
    Bailey continues to get very tired at school and stay inside at recess because she gets cold very easily. Sometimes she is so tired she doesn’t even go to school. On Friday, Bailey does well through the morning at school, but at lunch refuses to eat. She cries that her stomach hurts, so they decide to go home, and Bailey takes a long nap.
    Amanda and Marissa spent the weekend and Bailey has a great time with them. On Saturday everyone traveled to Portland to visit family and Bailey sleeps almost all of the day. When she wakes up she eats a little then goes back to sleep.

Sept. 19-25
Bailey had a doctor appointment on Monday in Portland so she didn’t go to school. Her MRI showed that her hemorrhage had moved around slightly, but otherwise there was little change in the tumor itself. Her blood work results revealed her platelet count was too low (6), so a blood platelet transfusion was required. She will return next week to check her platelet numbers in hopes they are high enough to continue her chemo treatments. She met with her rehabilitation doctor, who was very impressed with her physical strength, as it has improved a lot since the last time he saw her. He recommended she continue to wear her leg braces for walking a little while longer. Bailey was exhausted after all that and slept during the ride home.
    One day Bailey didn’t want to wear her braces at recess because she said they hurt. At the last recess of the day, Pam took her leg braces off and Bailey walked clear across the playground.
    This week Bailey has been very tired, and is doing a lot of sleeping. In the afternoons she has a hard time keeping her eyes open in class. Pam asks her if she wants to go home, but since Bailey loves school so much, she doesn’t want to leave. After school Bailey and Pam go home and Bailey takes a long nap then does her homework.
    Bailey’s school’s Family Barbecue Day was this week and her aunt and cousin came to have lunch with her. It was sunny outside so all the kids ate outside, but Bailey felt too cold to join her classmates, even all bundled up. She gets cold very easily.
    It was John’s birthday this week, so John, Pam, and Bailey headed out for dinner but Bailey was not feeling well so they celebrated back at home with cake and party hats, and had a very nice time. Both John and Bailey fell asleep with their party hats on!
    Pam and Bailey met with Bailey’s tap dance teacher for dinner and a movie, and Bailey was very happy about that. She was also very happy when her sister came up to spend the night and go to school with her! After school, Pam, Bailey, and Amanda went to have pedicures and have a fun time just with the girls.
    Bailey’s aunt Nancy from Bend came to visit and stay with Bailey while Pam took John out for a surprise birthday celebration. Bailey had a fun time eating Chinese food and watching a movie with her aunts. She also had a blast on Sunday at Willamette Valley Vineyards Harvest Festival and Grape Stomp. Bailey danced to music and enjoyed the beautiful view.

Sept. 12-18
Bailey is loving school, and it is wonderful therapy for her. She works on her math and spelling with all of her friends, raises her hand up high to answer questions, does her homework, and does more walking with her walker.
    At school this week she had a practice spelling test, and she did very well. On Friday she had the real spelling test, and got 100% plus the bonus word, "cooperate." Everyone is so impressed by how bright she is, as she whizzes through math and reading.
    Bailey decided that she wants to try walking during her recesses, so at all three recesses she walks with her walker! The other kids think it is great, trying help and encourage her. Bailey has a positive outlook and determined spirit, and she is working very, very hard!
    Towards the end of the week, at the last recess of the day, she walked with her walker clear across the entire playground without stopping — over 80 feet! It was truly remarkable. Being at school with her friends is the best therapy there is. So, Bailey will go to school every day. She’s happy with that because she loves school!
    By Friday, she was so tired from all the week’s hard work that she went to bed early. She also wanted to be rested and ready to watch her sister’s boyfriend play at the Oregon Ducks football game in Eugene. John, Pam, Bailey, Amanda, and Marissa had seats right on the field and had a great time at the game. They all went out to dinner afterwards, and Bailey was so tired after dinner that she slept the whole way home.

Sept. 5-11
On the first day of school, Bailey was so excited that she woke up really early, wanting to get ready! Actually, she was so excited all night long that she kept tapping John and Pam on the shoulder asking, is it time to get up and go yet?
    After breakfast, getting dressed and taking some pictures, Bailey was ready for school! With her mom and sister, they headed for Turner Elementary and had a wonderful first day! She did math, reading, drew pictures, made a visor, practiced a fire drill, hand lunch with friends, and went to recess. She declared that she loves the second grade. She stayed for the whole day and was really happy her mom and sister stayed with her too.
    On her second day of school, recess was hard for her because she’s still in a wheelchair and all of her friends are out running around and having fun.
    At music class, the teacher asked the students to stand up and dance, so Pam got Bailey out of her chair to do a little dance, and she laughed and had a great time! Her days are so full now, she is easily exhausted. After school she comes straight home and goes to sleep. One time this week at school she was tired and not feeling well, so she laid down to rest for a little bit, then she felt better.
    This week she went to see the The Greatest Show on Earth — Ringling Bros. and Barnum & Bailey® circus with her cousins Katie and Timmy! The show was so great! Bailey had a wonderful time laughing and cheering for the clowns, tigers, camels, elephants and acrobats. She lights up when talking about everything she saw that day.

Aug. 29-Sept. 4
This week Bailey started having problems keeping her pills down. She takes several pills a day — some of them very large for a 7-year-old’s mouth and throat. It is a constant challenge because her gag reflex kicks in and she throws up.
    Pam and Bailey went to Turner Elementary to talk about Bailey’s schedule, and about getting an aide at school. Sheíll join her second grade classmates on Monday, Wednesday, and Friday, and go to therapy on Tuesday and Thursday. She is so excited about school!
    At therapy she swam in an indoor pool with warm water, moving her arms, kicking her feet and making waves. Another day she worked with her hands, and her therapist said her writing was beautiful and that she was holding her pencil very well. She did some math and really impressed her therapist. Back at home she walked outside with her walker, and each time looks and feels more and more comfortable, sturdy, and in control.
    Over the weekend, Bailey, Pam and her sisters Amanda and Marissa went to the craft store to get sequins and rhinestones to put in their clothes. They all worked on decorating their shirts and jeans together and had a great time dazzling up their clothes.

Aug. 22-28
This week John, Pam, and Bailey went to Turner Elementary to register for school! Bailey is very excited about going into second grade. She met her teacher and saw friends — she can’t wait to start school. She also had a little party with a few girlfriends that are in her class, and had lots of fun.
    At physical therapy, Bailey had her legs stretched and practiced standing by herself. She still cries in frustration when her body doesnít move the way she wants it to, or how she remembers it did; it is hard for her to see her friends running, jumping and playing around, but at the same time it’s an excellent motivator to be walking again.
    After one therapy she headed to Portland for another set of blood tests. Her blood platelet count was up, which was great, and so she started chemo this week. She has been asking Pam if they can have a mother-daughter day, so they went to have a pedicure together and Bailey also had a manicure, and had lots of fun together! She also picked out a new fish and named him Bibble. Bailey really loves taking care of animals.
    Everybody went down to the Pringle Creek Community Event, and Bailey watched the Severin Sisters play acoustic guitar, banjo, mandolin and violin. Bailey loved hearing them play and talking with them about writing and singing songs and playing her guitar. Bailey loves to write songs. Heidi and Amy Severin played five songs just for her and gave her three of their CDs, autographing them just for her.
    One afternoon, Pam and Bailey were having a nice time sitting out on the deck. Suddenly Bailey said she wanted to go inside. Pam asked her why, and she said, grinning, that she could hear her favorite SpongeBob SquarePants episode on TV. Pam laughed and said they were having a nice time outside, but Bailey decided for herself that she wanted to go in and watch it, so she stood up on her own and started walking with all her determination towards that screen door! She couldnít quite fully make it, so with Pam’s’s help she made it inside to watch her favorite show.

Aug. 15-21
This week Bailey went to Portland to meet with her rehab doctor, who said she is progressing really well. She also had an appointment with her oncologist to check out her blood work, and with her platelet count low, she canít start chemo this week. She had another set of tests and the doctor will call with the results. Her platelets were still low, so weíre going to have to wait another week to start chemo.
    She had her physical therapy appointment, and she worked on stretching her ankles and legs, throwing the ball back and forth, and walking with her walker. She really wants to walk, but doesnít want to practice. She cries and doesnít like practicing, but she does it anyway with tremendous determination.
    Pam, Bailey, Amanda, and Marissa went shopping for school clothes, which was exciting because Bailey is really looking forward to starting school. She also went to the pet shop and bought a turtle. She named him Fred.

Aug. 8-14
Bailey still has her same wonderful sense of humor. She loves to crack jokes and laugh — a total sweetheart. Her spirits are high. She’s happy when she cooks, so using blueberries her teacher picked for her she whipped up a blueberry pie with Pam.
    At therapy they talked with the social worker about Bailey returning to school this fall, about what she would need there to be comfortable, and about her having a personal aid. Bailey’s teacher has been helping her stay caught up so sheíll be able to join her classmates in the second grade.
    Bailey put her braces on and did a lot of walking. She can do about two minutes of walking before she needs to sit down again, but she has much more control of her walker and can almost turn on her own. She is trying very hard and progressing well.

Aug. 1-7
Bailey finally had a bath in the bathtub this week! Yea, no more sponge baths!
    She had her first physical therapy appointment here in Salem and had her legs stretched, and stood by herself next to her walker while she counted to 100. She worked on walking up to a chair and turning around to sit down. It is very hard for her but she is doing great. With her braces on, she took three steps on her own without anyone holding her and without the walker.
    Bailey went swimming all week, which is wonderful therapy and exercise. With water-wings on, she can kick her legs and move her arms and go anywhere she wants to in the pool. She feels light as a feather in the water and free. She also holds her breath and goes under water.
    One of the nights this week was particularly warm, so Bailey, Pam, John, and Marissa slept outside, telling stories and watching the stars.

July 25-31, 2005
   Sun., 7-31: After breakfast, Bailey helped get herself dressed. She wanted to go for a boat ride today, so the family spent the day on the river. Bailey loves the water and wanted so much to jump in. Her doctors advised waiting until Tuesday to ensure healing at her central line and G-tube sites. She took a little nap in the shade and later went out on the Ski Biscuit [wearing a life jacket] sandwiched tightly between both of her sisters. She’s used to using the biscuit herself but this time, this summer, felt a little scared. But, she decided to stay while the boat went really, really slow. She was thrilled and can’t wait to be able to get her whole body wet!
   Sat., 7-30: Bailey felt better this morning and was ready for some fun. Today Bailey hosted a birthday party for her sister Amanda. She frosted and decorated a cake that she helped make, and directed the placement of decorations. While she was waiting for her sisters to arrive, she did some stretching and a little walking too. Once they arrived . . . the party started, and they ate cake and ice cream while Amanda opened her presents. Bailey gave Amanda a handbag that she decorated herself with, “I love you big sis,” hearts, and a drawing of her horse Jessie.
   Fri., 7-29: Bailey was still a little sore from her surgery yesterday, particularly up around her left shoulder where the new port is. It hurts to raise her left arm, but she said it does feel so much better to have her central line out. For the most part, Bailey continued to rest and recover from her surgery today.
   Thurs., 7-28: Bailey woke up at 5:30 a.m. this morning, excited to get the ìshow on the road!î So shortly thereafter, John, Pam, Bailey, and Marissa drove to Portland’s Emanuel Children’s Hospital for Bailey’s long awaited central line removal surgery. Bailey can’t wait to take baths and go swimming! Unfortunately, there was a scheduling error and Bailey’s surgery wouldn’t be until 10 a.m., so there was a little bit of an unexpected wait. By noon, surgery was over and Bailey spent the next couple of hours recuperating. Surgery went well, successfully taking the central line out and exchanging it for a small port under her skin. Doctors also put a shorter G-tube in. Bailey felt sore from all of that, but was happy to have it done. Later that day they drove home.
   Wed., 7-27: John, Pam, and Bailey drove to Portland this morning to meet with Bailey’s doctors about removing her central line. Everyone agreed it would be a good idea, so surgery was scheduled for the following morning. Later that afternoon in Salem, one of Bailey’s friends came for a visit. Bailey also worked on an art project — painting a little miniature piggy bank. She painted her purple with pink ears and a blue tail! For dinner tonight, it was Bailey’s famous onion stew. Together, Bailey and her mom made this special meal for her dad and uncle. And, it was delicious!
    Tues., 7-26: Bailey helped get herself dressed this morning and then John and Pam took her to her occupational and physical therapies outpatient appointments. Today Bailey worked on moving her arms and hands, stretching her arms with a big exercise tension band, and playing the card game Speed. She walked with her walker and learned how to turn and take a seat then get back up on her own. After lunch, Bailey went to the library. She initially picked out 20 book, but then narrowed it down to 10. She happily handed the librarian her card at the checkout, excited to take them home to get started on some reading!
   Mon., 7-25: Bailey used her walker today and walked the farthest she has yet! Her schoolteacher spent time with her today helping her with missed schoolwork. Bailey is very happy to be doing homework. She is really looking forward to being back with her classmates as soon as possible.

July 19-24, 2005
   Sun., 7-24: Bailey slept in pretty late today. The chemo this past week made her pretty tired. The medication has altered her sense of taste to where nothing tastes good to her anymore, which makes getting her to eat a challenging task. Bailey joined her sisters playing basketball and had a hard time shooting from her wheelchair, so John held the basket down for her to make baskets. Today John and Pam changed Bailey’s central line dressing. This is always difficult because Bailey hates it so much she cries the whole time. The bandages are very sticky. Later on, Bailey laughed along with everyone as Marissa learned how to drive a stick shift.
   Sat., 7-23: Bailey helped get herself ready then went outside in her wheelchair to feel the warmth of the sun. She really wants to go swimming but can’t until her central line is removed next week. Although not looking forward to having the line surgically removed, she knows she will then be able to go swimming, and she can hardly wait.
   Fri., 7-22: Bailey had a sponge bath after breakfast but cried the whole time because she wanted to be sitting in the bathtub. She helped get herself dressed then went out in the afternoon to see Herbie Fully Loaded with her friend. She had a very fun time! She did her exercises in the afternoon working on her arms and legs. After dinner she helped sort and stack Santana Crane invoices with her uncle and before bed, took her last dose of chemo for the week.
   Thurs., 7-21: Bailey did more walking using her walker today. She played board games. which is good exercise for her hands and fingers, then worked on kicking the ball and lifting little weights. After so much exercise, she took a long nap. She used her walker more in the afternoon, ate dinner, and took her fourth dose of chemo before bed.
   Wed., 7-20: Bailey wanted to walk this morning. She had her leg braces and shoes put on and then walked with her walker without anyone’s help. She even took her hands off the walker and stood all by herself! After resting, Bailey painted a bag to give her cousin for her birthday. Some of Bailey’s school friends came to visit, which Bailey was very excited about. Later she did her exercises, ate dinner, watched a movie, and had her third dose of chemo before bed.
   Tues., 7-19: Bailey was feeling pretty well this morning after having starting her chemo last night. After breakfast, she went to the toy store and picked out a voice-activated diary and a bear you can write on. She rested after lunch because her tummy wasn’t feeling well. After her nap she did some exercises, batting balls with a racket and kicking a big exercise ball. She also did a lot of standing today. After a visit with her neighbor who let her pick out a doll from his collection, Bailey spent the evening writing in her new diary. She was given her second chemo pill for the week then got ready for bed.

Mon., 7-18-05
After breakfast, Bailey had a bath and helped herself get dressed and brush her hair. She did some leg exercises with her exercise ball and then a little standing. She had her first occupational therapy appointment in Salem today. She had her vision checked and her arm and hand movements evaluated.
   Later at home, Bailey did some more exercises and then made a birthday card for her cousin Shannon and a special little card for her mom.
   The highlight of the day was going out to buck hay. With her sister Marissa driving the pickup truck, Bailey sat in the passenger seat, chatting and watching while the family loaded the trailer and barn with bales of hay. As they drove slowly through the field, she waved to everyone as if she was in a parade! Our little hay princess is so cute! She was so very happy to be able to participate in this annual family event. It really meant a lot to her.
   While everyone finished up outside, Pam and Aunt Nancy brought Bailey inside to take her first chemotherapy pill for the week. Bailey sat back and relaxed while watching a movie with them and then went to sleep.

Sun., 7-17-05
Early in the morning, Bailey was ready to watch the movie from the night before. She was still sounding stuffed up, probably from allergies, but as a precaution decided to relax inside today because she wasn’t feeling well. She wanted to rest, so she took two naps during the day and when she woke up from the second one she felt better. Later, family came over for dinner.

Sat., 7-16-05
Bailey played all morning in bed with her sister Amanda, watching Saturday morning cartoons and drawing pictures. She had her morning medication and was carried downstairs. She is starting to sound a little stuffy, so she took it easy and relaxed on the couch. It is probably the change in pollen count from Portland to Salem and because all the hay in the fields had just been cut. Just in case though, she rested and had her temperature checked throughout the day.
   Pam’s friends came over to take her to dinner for girls’ night out. Bailey was so proud to show everyone how far she can walk now with her walker ‚ about 20 feet! Pam had a nice time at dinner with her girlfriends.

Fri., 7-15-05
Since it was such a beautiful day, everyone decided to spend it outside. Bailey was sad that she couldn’t go swimming because of her central line tube in her chest. Pam and John are hoping to have the central line removed soon so Bailey can enjoy the water. Swimming will be excellent therapy for her.
   In the meantime, John got her a little kiddie pool for her to sit in under an umbrella. She had a great time in the water playing with toys.

Thurs., 7-14-05 · Bailey is released from Emanuel today!
Bailey’s self-care therapist worked with Bailey on brushing her hair and getting herself dressed. Then she showed her doctor how well she has progressed in the last week by using her walker to walk with him. He was amazed, and said that it was a major accomplishment, which made Bailey feel very proud.
   Pam and John reviewed Bailey’s at-home care details with doctors, nurses, and therapists, and then it was time to go! On their way out, Bailey put her handprint and wrote her name on a special hallway wall ‚ this is the tradition when a patient is released from Emanuel. Bailey has been looking forward to this moment for a long time. She put her handprint right next to her friend Carrie’s, who had gone home the day before.

Wed., 7-13-05
This morning Bailey had an MRI. She has done this before, but today she felt scared. Halfway through the test she started screaming and crying, so her nurses had to pull her out. Unlike previous tests, this time she wore little mask over her eyes, which she didn’t like, and she was too hot with all her blankets, so the nurses took those things off and she made it through the remainder of the test just fine.
   After her MRI, she went on a no-parent outing with other kids from her unit. One of Bailey’s therapists accompanied her with the group to the Oregon Zoo. Bailey had a wonderful time and upon her return told her parents all about her adventure with the animals and the beautiful butterflies!

Tues., 7-12-05
This morning Bailey walked down the parallel bars twice and looked so much more confident in what she was doing. Whereas before she had difficulty moving her left leg, this time she picked it up just fine and moved it along. Then she used the Power Pumper pedal bicycle, which works her legs and her arms at the same time.
   After lunch, Bailey wanted to use the karaoke machine. Bailey loves singing so much and the karaoke machine was a total blast. She sang some country favorites to her small audience of family and friends, then gave a speech, “Thank you Portland! I want to thank my parents, my fans, my acting teacher, and God.” After that, she tried out her new walker and took a few steps! Wow! Today was a real milestone.
   It is remarkable how Bailey is progressing step-by-step, little-by-little. Her tremendous success is due to her determination and strong will, her parents’ relentless mission to help her, and her medical team, coupled with the caring support and loving prayers from family and friends, and those she’s never met. We cannot thank you enough!

Mon., 7-11-05
Bailey had self-care this morning, then worked on standing wearing her leg braces. The goal for the day was to have her stand and support herself with the parallel bars, but Bailey decided she wanted to do more than that . . . She wanted to WALK, so she went ahead and took a step and walked halfway down the parallel bar with the therapist’s help. It was so exciting!
   Bailey also tried pedaling a Big Wheels tricycle, but her legs weren’t quite long enough. At physical therapy, she worked on her balance by sitting up on a big exercise ball and on the mat she did leg stretches and worked a puzzle.
   At speech therapy, she worked on opening her mouth really, really wide and moving her tongue, which helps her with word pronunciation. After a little nap, family came by for a visit and together made animals out of balloons ‚ lots of fun ‚ and went down to the garden to stop and smell the roses.

Sun., 7-10-05
The family went to church in the morning and then ate breakfast together. Bailey worked on standing briefly with her new leg braces. To work her hands, she played board games and then did some leg exercises. Jerry played a sweet little guitar lullaby for Bailey and she conked out fast and slept until it was time to head back to the hospital.

Sat., 7-09-05
At home, Pam gave Bailey a shower with Bailey’s new shower chair. She was dressed and brought downstairs to play with her sisters all morning long. After lunch, family came over to visit and Bailey stood up for about one minute, which was so awesome!
   Bailey and Tanna made brownies together . . . and happily ate them too! They had loads of fun making Tanna’s baby sister Avery giggle and laugh. Bailey had a little nap in the afternoon, played some more games with her sisters, and then everyone had dinner together.

Fri., 7-08-05
Bailey started her day with her self-care therapist, who helped her try to brush her own hair and dress herself. At physical therapy, Bailey tried on her new leg braces for the first time. They are hard plastic molds that will help her stand better. She picked the blue-swirled “Ice Age” design, and likes them a lot. At occupational therapy, she played a board game using her fingers to pick pieces up and her arms to reach out. Her psych therapist asked her to read and write words and do simple math; he reported that Bailey is very bright and has a tremendous sense of humor. We knew that already!
   At art therapy, Bailey used Play-Doh to make a turtle, fish, and dolphin. After lunch, she went to speech therapy where she blew bubbles and a horn to strengthen her lungs. Then she made up a story by looking at pictures in a book. John and Pam gathered her things for the weekend, then they headed home, happy to be back amongst family and all the animals.

Thurs., 7-07-05
Bailey’s self-care therapist came in the morning, and then she had her usual therapy routine. Her occupational therapist would give her a word, then Bailey would have to think up another word that means the same thing. Bailey did so well with this activity that she scored in the 19-year-old range! Pretty wild. She is so remarkably bright.
   She received new leg braces which will help her stand and get on the path to walking again. They are Ice Age blue in color and she is very proud of them. She practiced stretching her arms out by playing board games and using her hands to pick up pieces. She showed her doctor all the progress she has made, and her doctor was very impressed with her tremendous improvements just since last week.
   A very big and gentle golden retriever named Artie stopped by to visit Bailey this evening. Artie is a therapy dog bringing cheer to children, along with his owner. He quietly put his head at Bailey’s bedside, she lovingly petted him and said how much she missed her dog Shelby. Before Artie left, he gave Bailey a picturecard of himself. Afterward, Bailey asked Pam to note on the back of the picturecard: Artie’s name, date of his visit, and that his visit made her feel a lot better.

Wed., 7-06-05
In therapy this morning, Bailey tried kicking larger, heavier balls. She is getting much stronger, because she wasn’t able to do this before, but it was difficult for her. After therapy her mom took her down the hall to visit cousin Katie who was at Emanuel for the day having tonsillectomy and adenoidectomy surgery. During their visit, Katie and Timmy presented Bailey with a baggie containing homemade stickers and a note, and $22.83; fruitful results from their 2-hour lemonade stand sale held the day before. A Tri-Met bus even stopped at their stand for lemonade. Total excitement! With help from their neighborhood friends, Katie and Timmy raised the money for Bailey to pick out something special for herself.
   At art therapy, Bailey made her mom a beautiful box and worked on a Christmas picture that’s been submitted for the hospital’s Christmas card contest. Then she frosted (and ate!) cupcakes up in the kitchen, and had a visit from Clement the Clown, who gave Bailey a red foam nose and a peacock feather. It was a lot of fun. John, Pam, and Bailey went out to dinner and watched wake-boarders on the Willamette River, which Bailey enjoyed watching.

Tues., 7-05-05
Bailey had a 30-minute surgery this morning switching her g-tube to a MIC-KEY. This low-profile gastrostomy feeding tube will be a lot better than having the long tube always sticking out. She was very nervous about the procedure and was given some medicine to help her relax and fall asleep. She conked out right away and didn’t remember anything when she awoke. While resting during recovery, John and Pam met with Bailey’s doctors and therapists for their weekly meeting. Bailey’s care team reports she continues to progress wonderfully, especially her speaking ability. She will go home (released from Emanuel) on July 14! Wow, this is great news!
   Bailey felt a little woozie from her surgery, but wanted [and was determined] to go to therapy anyway. She stood a few times, played games such as kicking her legs, batting the balloon, and then went to art therapy. The new MIC-KEY was a little sore, probably because the pain/surgery medication was wearing off, so she headed back to her room to have dinner and watch The Incredibles.

Mon., 7-04-05
Because today is a holiday, Bailey was able to stay home an extra day. She got dressed in a special Fourth of July outfit and everybody went to Dairy Queen to get ice cream. They left the wheelchair behind on purpose, and John carried Bailey inside and everyone sat together in a booth.
   It was very hot this afternoon so John, Pam, and Bailey went out to sit by the pool. Bailey was upset about not being able to get in the water (her central line prohibits this activity), but she understood why and knew that as soon as she is better she will be able to do anything she wants. She did ask John and Pam to promise that they’ll get her a little wading pool in the meantime so that she can sit in it up to her waist.
   Then Bailey played Washer-Toss down in the barn with family and did really well. She actually was able to push herself a couple of feet in her wheelchair! Pretty amazing.

Sun., 7-03-05
After breakfast, everybody headed out for a day in the boat on the river. Bailey was so excited because she loves to go fast in the boat! They had a blast, stopping to have a picnic lunch. She wanted to put her toes in the water, so she sat on her dad’s lap and dabbled her feet in the water. She didn’t realize that it was going to be so cold, so that didn’t last very long! It did feel good though, for a short amount of time.
   After dinner, everyone got bundled up with blankets and jackets and went out to watch more fireworks. They were awesome! Even the neighbors down the hill enjoyed them from far away!

Sat., 7-02-05
After a hearty homemade breakfast the family spent time working puzzles together. Bailey wanted to bake something, so they made a delicious Banana Cream Pie. Bailey chose the ingredients for the crust herself, without a recipe! It was a lot of fun. Bailey spent the day happy to be home, relaxing and holding her kitten Lily.
   After dinner and visiting with family, John and Pam bundled Bailey up and headed outside to have a little pre-Fourth of July fireworks show!

Fri., 7-01-05
Bailey’s self-help therapist came in the morning to assist Bailey with brushing her own hair and dressing herself. She did all of her regular therapy — kicking and stretching and briefly standing — and blew on a horn, pinwheel, and through a straw. And, played a game with Carrie by blowing a ball back and forth between each other. Bailey has been very tired in the afternoons, so after practicing standing everybody went back to the room to prepare for going home for the weekend. She slept the whole way home. That night John, Pam, and Bailey went out to pizza with family, and Bailey coincidentally saw friends of hers there too!

Thurs., 6-30-05
This morning Bailey had the opportunity to show off for her doctor. She shared all her therapy accomplishments this week and he was very pleased with her progress.
   Bailey had cast molds of her legs and feet made; they will be used to make splint braces that will support her legs and ankles and aid her in learning how to walk again. In her afternoon therapy, she was given two words and asked how they were alike. Bailey is very bright and did really well with this exercise. At speech therapy she did some more singing, had some visitors back up in the room, took a little nap, and went to Red Robin for dinner. Before bed, she had her hair washed, played some checkers, and then hit the sack!

Wed., 6-29-05
Bailey slept-in this morning and seems to have fully recovered from her fever. She had breakfast and went to therapy; this time standing up with the therapist three times! She worked on kicking her legs and stretching, making cards and rubber-stamping. Bailey and Carrie played board games, which helps their hand and arm movement, and blew bubbles which works the muscles she uses for speaking.
   For her Wednesday outing, she went to Ceramica and painted a kitty piggy-bank. She had a wonderful time with everyone but was totally exhausted! After a nap, John, Pam, and Bailey went out to dinner to celebrate Bailey’s progress and Pam’s July 1 birthday. They went to Portland City Grill on the 30th floor of “Big Pink,” Portland’s second tallest skyscraper. They enjoyed special windowside seats overlooking the city and spectacular views of Mount St. Helens and Mount Hood. Bailey loved it! And was in such fun spirits that she used an empty to-go box as a hat on their way out, just to be silly!

Tues., 6-28-05
Bailey woke up today with a 101-degree temperature. She felt well enough to go to physical and occupational therapies though, where she played a few games and painted a picture. She rested in her room afterwards while John and Pam went to their weekly meeting with Bailey’s doctors and therapists, and they all expressed how impressed they are with Bailey’s tremendous progress. They set a tentative date of July 14 for her discharge from the hospital.
   Bailey went to speech therapy with her friend Carrie and they sang karaoke together and played board games. Bailey worked on lifting her legs too. Her temperature returned to normal, and John, Pam, and Bailey went down the hall to the Starlight Theatre to watch The Pacifier for family movie night.

Mon., 6-27-05
After breakfast with Carrie, Bailey had physical therapy and did some kicking with her legs and tossing beanbags. She rolled on her side and worked on strengthening her leg muscles. At occupational therapy she worked on scooting herself down to the end of the bench and popping bubbles with her hands while up on the tilt-a-table. Bailey was telling one of her therapist’s all about her modeling, and at art therapy she painted another mask (this time for John). A friend of Pam’s came by to visit, and so did some family, and they went down to the theatre to sing some karaoke, which just about Bailey’s favorite thing to do in the whole world! It was loads of fun.

Sun., 6-26-05
Everyone went to mass at Queen of Peace Church, then came home for another yummy homemade breakfast. In the early afternoon, they drove over to John’s family farm to visit Grammers’ siblings and their kids, and celebrate Bailey’s Oregon homecoming and other recent special family events. They had a barbecue, the kids decorated a big ice cream cake, and Bailey shared her special lemonade with thirsty basketball players. They visited the horses, llamas, sheep, and Paul, the new goat. Bailey wanted to have a wheelchair and bicycle race with her cousin Katie — everyone had a blast!
   After family pictures, it was time to return to the hospital in Portland. It was hard to say goodbye but nice to know another Friday weekend would be here again soon.

Sat., 6-25-05
Bailey was so happy to be home, and after a yummy homemade breakfast she played games with her family. She came up with the idea of selling lemonade! So they made lemonade together, and did up a nice sign, and she sold lemonade to her family.
   Her first-grade and kindergarten teachers came by to visit, and they all went for a walk around the yard to see the garden and the horses. She took a little nap in the afternoon, and after dinner got all bundled up to go make S’mores! It was just like camping, which Bailey loves to do. John made a fire outside and they roasted marshmallows and had one of Bailey’s favorite treats: peanut butter S’mores! They stayed up late laughing and telling stories under the stars.

Fri., 6-24-05
After breakfast with Carrie, Bailey went to occupational therapy to play the beanbags game. She scored 300 points, an all-time personal record!
   After lunch, nurses changed her central line bandage, which Bailey hates to have done. At physical therapy, though, her spirits were boosted when she was able to stand on her own two feet with the therapist for the very first time in three months! She put her hands on the therapist’s shoulders, who was kneeling, and she stood. It was tremendous!
   At art therapy she did a gorgeous painting of a rainbow and at physical therapy she had a great time swinging on an indoor square-seat swing, going back and forth and around the world. Then John and Pam got Bailey’s things together and they headed off for home. Bailey slept the whole way. Amanda and Marissa were there waiting and they laughed, played, and had dinner together. Bailey started to watch The Three Amigos and sang the opening song, laughing the whole time. She was pretty tired, but didn’t get a very good night’s sleep because of pains in her side, probably because of her chemo. Thankfully today was her last dose of chemo for this week.

Thurs., 6-23-05
Bailey did leg lifts and threw the beanbags around at morning’s occupational therapy. At physical therapy she practiced kneeling and hanging onto a bench, pushing herself up from sitting on her legs to kneeling on her knees, which is called short standing. These are the small but important steps Bailey is taking to be able to walk again. She also used the tilt-a-table to stimulate the complete vertical position, and she batted balloons with her good friend Tanna.
   After physical therapy in the afternoon, she had several visitors, and Bailey went out to the garden. It was a beautiful day. She spent the rest of the evening visiting with family and friends. Katie and Timmy brought her Junie B. Jones and the Stupid Smelly Bus and Katie read a couple chapters outloud.

Wed., 6-22-05
At occupational therapy this morning Bailey tried to balance on her hands and knees, which was very difficult. She went to art therapy in the afternoon, but was brought back to the room early because she wasn’t feeling well ‚ probably a result of the chemotherapy. Her occupational therapist came to her room to work with her, and Bailey played Bingo via TV; they televise the game in the hospital and you can call in when you get a Bingo, then come down to pick out your prize.
   After resting, she felt well enough for therapy looking at pictures and identifying what was missing in each picture. Each one was more and more difficult, and Bailey did really well. She is sharp as a tack, as always!
   She had a bath and spent some time with visitors. Later they went out to Benihana for dinner. This is a fun Japanese restaurant where the chef prepares dinner right there in front of you. Bailey loved watching the chef spin the knives and flip shrimp tails in his hat! It was a lot of fun. Back at the hospital, she played a few games then got a good night of rest.

Tue., 6-21-05
Last night before bed, Bailey started a new week of chemotherapy and did fine. In the morning, Pam wheeled Bailey to the common breakfast room to have breakfast with her friend Carrie, then Pam and Bailey went to physical therapy. John and Pam went to the weekly meeting with Bailey’s doctors and therapists and were told how well Bailey is progressing; her speech, in particular, has improved quite a bit.
   After a hard day of physical and occupational therapy, Bailey was rewarded with frozen yogurt. The person from Child Life brought Bailey a special doll that has a hospital gown, a G-tube, and together they gave her doll medicine through her G-tube and put BAND-AID adhesives on her. Bailey had a fun time taking care of her doll.
   In the evening they took Bailey down to watch a movie in the theatre for family movie night, and afterwards she was given a sponge bath and went to bed.

Mon., 6-20-05
Bailey had breakfast with her friend Carrie this morning, then went down for physical therapy. She did the Tilt-a-table exercise for 20 minutes, batting a balloon with a baton. She had art therapy and finished up the mask that she has been working on. She also did an amazing painting of her horse Jessie. Now that she has accomplished so much and earned stickers for every good job she has done in therapy, she has filled an entire page with achievement stickers, which means she gets to pick out a prize from the prize closet. As a treat for all her good work, Pam and Bailey had a frozen yogurt outside, and Bailey learned about Journey Beads. These are beads that children collect when they pass a certain goal. There are different beads for every accomplishment. Based on all she has done, she picked out tons of beads and started her Journey Beads necklace. After dinner she watched the movie, The Three Musketeers and before long asked to have a Three Musketeers candy bar!
   Today Bailey received a special bouquet of cookies from a friend that said, "Cookies are good medicine," and family decorated Bailey’s room with hot pink paper hearts, colorful paper flowers, a poster for Bailey’s friends to sign when they visit, a poster of pictures of Bailey and her family, and a miniature-size Bernese Mountain dog just like Shelby.

Sun., 6-19-05
John, Pam, Bailey, Marissa, Amanda, and Kyle went to church in the morning, and Father George at Queen of Peace Catholic Church announced that everyone in the parish had been praying for Bailey, and that she was back. Everyone clapped and Bailey waved. She was very touched that so many people where cheering her on. Just like they have always done in the past, they went out for breakfast after church. Bailey wasn’t feeling very well though, so they came home soon after to rest.
   She had a few visitors in the afternoon, and Pam helped her put frosting and sprinkles on the cake for John. It was a beautiful day so went outside in her wheelchair with John, Pam, Marissa, Amanda, and Kyle to shoot some hoops - Bailey would bounce the ball to them and they’d make a basket. She also laid on a blanket on the lawn for a while and felt some sunshine.
   In the evening they had to go back to the hospital for another busy week of progress and therapy.

Sat., 6-18-05
After a wonderful night of rest in Mom and Dad’s bed, Bailey woke up and ate a yummy homemade breakfast. Some family members came over to visit and took Bailey out in her wheelchair for a walk and to see her kittens. She brought her kitten Lily with her. They went down Pear Tree Lane, but turned back when there was a light but warm sprinkle. Bailey helped Pam make a cake for Father’s Day, and they laughed and had fun. Bailey [and Pam and John too] loves being home.

Fri., 6-17-05
Bailey had breakfast with Carrie in the kitchen, then worked on moving her legs and rolling back and forth on the mat down at physical therapy. In one exercise she got up on her hands and knees, which was very difficult because she had to support her whole body with just her arms and legs, and she did it to the count of ten. She didn’t want to, but she did it anyway because she really wants to get better. Back on the Tilt-a-table she batted the balloon more, and all she could think about was going home that afternoon.
   John and Pam got Bailey’s medication and items together, then headed home this afternoon. Bailey was so excited to have a pass for the whole weekend! One of highlights of the weekend was a fun little birthday celebration party for Kyle that Amanda arranged. It was a blast! Afterwards they all watched a movie together, then Bailey got to sleep in her parents’ bed, which she loves to do.

Thurs., 6-16-05
Bailey’s self-help therapist came in the morning and took her down to use her shower chair and take her own shower. The chair holds her up with straps and helps her sit upright. Pam helped her get dressed and John, Pam, and Bailey went down for physical therapy. She worked on moving her legs, kicking a big ball, and using her arms and hands with the bean bag toss. She wants to use her dominant right hand, but at therapy she is working on using her left more often. She practiced sitting up by herself again, and did a great job. At occupational therapy she worked on raising her hands over her head and rolling from side to side without assistance. Each day she gets better with these exercises.
   She made pizza with her friend Carrie in the kitchen. She made two pizzas - one cheese for her, and one pepperoni and tomato for John.
   After lunch she used the Tilt-a-table that holds her upright, and she knocked balloons back and forth with John and Pam. She was all tuckered out after that, so she just talked with visitors, relaxed, and rested.

Wed., 6-15-05
Bailey woke up at 2 a.m. and asked Pam if the tooth fairy had come yet. She looked under her pillow and found $3! After breakfast she went down to physical therapy, throwing beanbags in a bucket and reaching up high with her arms. She sat up on the edge of the table all by herself for 40 seconds, which was tremendous, and at group therapy she played games with her friend Carrie.
   After lunch Bailey went out on an outing with other kids (and no parents!) to the Children’s Museum for four hours. She had a wonderful time, and came back with two huge flowers painted on her cheeks. Bailey’s dance troupe teacher brought by a video of their First Wednesday performance in Salem, which Bailey had been practicing back in March. She also brought Bailey a cowgirl hat with a hot pink scarf tied around the top, which was a part of the dance group’s costume.
   Later on, family members from California came to visit. After such a full day, she watched part of a movie and went to bed for some well-deserved rest!

Tues., 6-14-05
Bailey went down for therapy and played games with her friend Carrie while John and Pam had a meeting with Bailey’s doctors and therapists. They talked about the plan for Bailey’s recovery, and they said it will be only two to four more weeks before she will be able to return home. She is progressing so well!
   Bailey went for physical therapy and got tested for a shower chair. She also laid down on a tilt-a-table, which holds her in place then goes upright so she can stand up. She stood up and said that it felt really good to get her legs upright!
   Back in the room she played Connect Four with Carrie. Friends of Pam and John came up from Salem and everybody including Bailey went out for dinner together. Earlier in the day Bailey lost a tooth, so she was looking forward to checking her pillow in the morning! They talked about that, read some stories, said their prayers and sang their songs, and got some good rest.

Mon., 6-13-05
Bailey’s nurse came in the morning for Bailey’s self-help therapy, having Bailey help bathe herself and get herself dressed. Bailey and her friend made cookies down in the kitchen, and put frosting and sprinkles on them; picking up sprinkles and adding them to cookies was not only fun, but it was a great exercise in hand movement. She had school for a half hour, then went to art therapy, where she worked on painting a beautiful mask that will be hung on the wall. She also finished a very special necklace for Pam with her name on it.
   Back in the room, Bailey’s classmate Megan came by to drop off an album from her class at Turner Elementary. It was done by her teachers and staff at the school, and had Bailey’s poem in it. Also one of Bailey’s teachers from Little Red Preschool came by to visit, and so did her friend Ingrid from acting class, and also a bunch of family members.

Sun., 6-12-05
Bailey had her morning medicine, Pam helped her get dressed and John carried her downstairs for breakfast. As soon as she was done, she asked, "What are we having for lunch?" [Bailey’s food cravings are a side effect of her medications.]
   Marissa and Bailey played another board game, and several family members came over to visit during the day. Bailey went outside to sit on the trampoline with John and Marissa, and went down to the barn to visit with her horses and cows, which was really fun for her. She kept John company while he planted the vegetable garden.
   After Marissa left for Eugene, Bailey had a huge meltdown, but calmed down a little after talking with her over the phone. She loves her sisters so much! Then they had to get back in the car and head back to Emanuel, which was difficult because she really wanted to stay at home.

Sat., 6-11-05
This morning Bailey woke up and was so excited about going home to spend the night! On the drive down, everybody got six-inch sandwiches except Bailey, who wanted a 12-inch one, which she completely finished! Marissa came up from Eugene, and they all played board games and spent time together at home. Bailey wanted to make brownies for John and for the nurses at Emanuel, but she kept trying to dip her finger in the batter! It was a lot of fun. Most of all, Bailey was so excited to sleep with John and Pam in their bed. She was so happy to be there and she fell asleep right away.

Fri., 6-10-05
After being dressed and eating breakfast, Bailey went down for therapy. She was able to sit on the mat and hold her head up all by herself, turning it from side to side without dropping it at all! She also played with balloons with her friend Carrie, who is also at the hospital, and focused on using both of her hands and arms.
   John, Pam, and Bailey all went to school at the hospital together and read stories. Bailey’s speech therapist was there and helped her pronounce her words slower and louder. After lunch she had occupational and physical therapy, then had a bit of an emotional breakdown. Her situation makes her very sad and upset. She calmed down when she was able to talk to Amanda over the phone.
   She napped after therapy. Later on, family came to visit and they went to watch The Incredibles in the movie room. Rich Bailey, who organized the Night of Fire car show benefit in Salem, came with his daughter to meet John, Pam, and Bailey for the first time. John and Pam were happy to be able to thank him in person for all his hard work for Bailey. They wish they could personally thank everyone who has helped Bailey in some way.

Thurs., 6-9-05
Bailey’s therapists came in and helped her get dressed and washed up, then they took a short trip over to the Lloyd Center Mall for an outing. Bailey really wanted pizza so she had small bites and ate half a slice! Then she wanted chicken and rice, and ate more than half the order.
   In the afternoon she played with Legos and exercised by rolling from side to side and picking things up. She played the card game UNO with another girl named Carrie and they had a great time together. Bailey’s speech therapist evaluated Bailey’s ability to eat more solid foods. She tried macaroni and cheese and other munchies, and since Bailey did so well, she graduated to a new menu of food! She ate a bowl of Rice Crispies and was able to pick up spoonfuls all by herself and put them in her mouth.
   John, Pam, Bailey, Amanda and a bunch of family members went down to the garden and walked around for an hour. Bailey picked flowers and a strawberry, and the weather was so nice they didn’t even need to wear jackets.

Wed., 6-8-05
Bailey got up and ate breakfast, then went down for morning therapy. For lunch she had mashed potatoes and gravy, and peas, and she ate almost all of it. She is getting tired of most of the food she has had to eat, and asks for pizza often.
   She had art therapy in the afternoon, which she really enjoyed. She was given a box to decorate with colored tissue paper. At occupational therapy she was asked to point at certain images in a picture book, but she had a hard time with this because she is still seeing double. They put a patch over her right eye and now she is able to point exactly at the object she wants to. At physical therapy, she throws beanbags through holes in a board to try and get points. She throws with her right arm, which she hadn’t moved for the longest time, and now that arm is stronger than her left. She ended up with 105 points, surpassing her goal! She also built a beautiful mansion out of Legos.

Tues., 6-7-05
Bailey now has a hot pink wheelchair, which she was very excited about because hot pink is her favorite color. Her therapist came in the morning to work with Bailey on self-help exercises. She had Bailey try to bathe herself and wash her own hair, and have her pull her own pants up when getting dressed. She had her kick a ball, hit a balloon with her hands, and sit upright on a mat. She is trying so hard to increase her movement!
   John and Pam had a meeting with all of Bailey’s therapists to discuss what everyone’s role will be in Bailey’s recovery. In addition to speech, physical, and occupational therapies, Bailey will have art therapy and 30 minutes of school per day.
   After lunch Bailey did rehab with Pam. Bailey was frustrated because while she could move her legs, she couldn’t kick the ball as strongly as she wanted to. She really wants to be doing better.
   Family members and friends came by to visit today, and so did Mr. Scrubs, the hospital clown. He did a little show for Bailey and friends, and made Bailey a tiny pink dog out of beads, blew bubbles, and performed a mini magic show. Everyone loved it, especially Bailey!

Mon., 6-6-05
For breakfast, Bailey had some purèed apples and bananas and some orange juice. John and Pam packed up Bailey’s room to prepare for moving from Acute Care to School Age Rehab. Bailey’s occupational and physical therapists came to work with Bailey to evaluate where she is with her speech, movement, remembering, and thinking. They said they’ll be working with her from 9–noon each morning and 1–4 in the afternoons, with rest breaks. Hopefully on Wednesdays she’ll go on field trips with other kids to OMSI or the zoo.
   For lunch she had mashed potatoes, cream of mushroom soup, chocolate milk, and yogurt. She managed to lift the spoon to her mouth to feed herself! This is a very big step. They moved over to her new room after lunch, then went to the hospital’s Hollywood Video Starlight Theater to watch a movie. She loves to go there, and today was particularly special because she didn’t have to sit in her wheel chair; she actually sat on the couch in Pam’s lap and they cuddled while watching the movie!
   Bailey’s friend Katie from talent school came for a visit. Bailey was thrilled to see her and have time to catch up in person. Katie, an eighth-grader at Lake Oswego Junior High, loves Bailey very much and has e-mailed beautiful, cheerful messages to Bailey several times a week since early April. Katie held a recent fundraiser at her school raising over $400 for Bailey’s fund. Thank you Katie and everyone who supported your efforts!

Sun., 6-5-05
Bailey got up this morning and was so excited because today she got a pass to go home for the day! She kept asking and asking when they were going to go because she just couldn’t wait to see her new kittens. So, they got going as quickly as they could and headed south to Salem where puppy-dog Shelby was waiting there at home to greet her. Bailey was so happy to see Shelby again and to be back inside her own house! She picked out two kittens to keep, named them and held them on her lap. She named one Lily and the other Brownie. Several family members came to visit, including Uncle Jimmy, Aunt Erin, and their kids who came up from California.
   Bailey ate all day long and stayed home until six o’clock in the evening, when they needed to leave to go back Emanuel Children’s Hospital. She starts rehab on Monday and can’t wait to get through another week so she can come back home! She had such a nice day today.
   This has been a wonderfully exciting week full of many moments of joy. Thank you for keeping Bailey in your thoughts and prayers.

Sat., 6-4-05
Bailey started her morning off eating a lot of French toast puree, mashed bananas, and some milk. She is eating so much more now. She had another bath with the nurse and Amanda and Marissa. Then she ate mashed potatoes, vegetable soup broth, and Jamba Juice. A whole bunch of family members came to visit today and they all went down to the movie theatre. They also went down to the garden outside and followed a special yellow brick road, complete with a big Tin Man holding a pair of red sparkly glitter slippers just like Bailey’s at home. They went to the cafeteria to get some snacks then Bailey enjoyed several sips of vegetable soup broth, and later on more mashed potatoes, gravy, broth, yogurt, and Spaghetti-Os …  She just wants to eat, and eat, and eat! They couldn’t get her to stop! She has become an eating machine!
   Bailey raised her arms in joy when her puppy-dog Shelby showed up in her room with special permission for a visit! She softly stroked Shelby’s head, which was resting on her bedside, and the both of them were so happy to see one another again.

Fri, 6-3-05
Bailey had French toast puree with yogurt and orange juice in the morning. She used her hands to brush some of her My Little Pony horses. It was the first time she has used her hands like that. Her speech therapist came and worked with her on trying to blow bubbles and pop them with her hands and feet. It was difficult but Bailey did really well. The Make-A-Wish Foundation came to ask Bailey about her wish, and she asked for a trip to Disney World, and they said they would try to make her wish come true.
   She ate vegetable soup broth all day long and loved it. She is eating more and more and more with each passing day.
   Amanda and Marissa came up to spend the night, and Nancy and Casey also came and everyone watched a movie in the movie theatre. Bailey thought the theatre was so great, and John even provided some specially-made admission tickets for her to present to Pam at the theatre’s red curtains. It was very fun!
   Meanwhile, Capitol Auto Racing held a huge car show in Salem to benefit Bailey. The event was totally packed! A very special thanks goes out to Rich Bailey and Jim Billings for organizing the event, to Papa’s Pizza, Albertsons and Rite Aid for providing the space, people who brought their cars and donated items, and to everyone who volunteered and helped to make it happen – John and Pam are so grateful for everyone’s love, kindness, and support.

Thurs., 6-2-05
Bailey started her morning with some mashed up bananas and a sponge bath by her mom. The occupational therapist evaluated Bailey for going to rehab, and had her sit upright with her legs dangling off the side of the bed. It was the first time she has been in that position and she cried because it hurt a little bit. She laid back down and the therapist asked her some questions to see if she knew which month it was, which season we are in, and how old she is. Bailey answered all the questions correctly.
   A physical therapist came and sat Bailey on the edge of the bed again, and this time she didn’t cry. Then Bailey got into her wheelchair and took a ride through the halls. She stopped to see the tropical fish in the aquarium, saw what the movie theatre looks like, then went to the play room and had a very fun tea party. Bailey picked up her tea cup all by herself and lifted it to her mouth several times, and opened her mouth really wide. She lifted a plastic corn on the cob to her mouth too! Afterwards she had a real bath in a miniature bathtub and she absolutely loved it!
   Today was John and Pam’s wedding anniversary, so after exchanging gifts and sharing cards and flowers with each other and with Bailey, they were able to go out to dinner nearby. Grammers and cousin Annie and her friends stayed with Bailey. Once John and Pam left for dinner, Bailey asked to have one of her very first drawings that she had just done folded up into a card. Annie asked what she wanted written on it, and Bailey replied, “Happy Anniversary dear Mom and Dad.” With a little bit of help, Bailey drew a big heart and signed her name.

Wed., 6-1-05
Wonderful news — Bailey is Back in Town!  Today was a very busy and exciting day for Bailey. When she was told about going home, she kept saying, “Yeah! Yeah! Yeah!”
   Her morning started early with yummy bites of yogurt, cereal, and deviled egg for breakfast. Then, Pam gave her a bath, fixed her hair all pretty, and dressed her in a lovely soft lavender dressy nightgown custom-made by Grammers.
   Together, John and Pam packed their things and gathered all of Bailey’s medical needs and information in preparation for their flight home to Oregon. Once all packed and ready to go, they said their good-byes at M.D. Anderson and were picked up and transported by ambulance to the airport. Bailey traveled in style, and slept through it all, aboard a private air ambulance jet accompanied by two nurses and Pam and John. [Amanda flew home Tuesday night.] The plane made two stops along the way for refueling, and bathroom breaks too, as there wasn’t a bathroom onboard. Overall, it was a smooth flight.
   Despite the torrential downpour in Portland upon arrival, they managed to depart the plane into another ambulance for transport to Legacy Emanuel Children’s Hospital. Emanuel staff expected their arrival, helped them get comfortable in a temporary room, and Bailey’s doctors and nurses welcomed them.
   Bailey was soon greeted by family members who couldn’t wait to see her. Even though it was a long day, Bailey was remarkably alert and in good spirits — very happy to see everyone. For dinner, she enjoyed a few tiny pieces of turkey, a sip of chocolate milk, and several spoonfuls of chicken noodle soup that she thought tasted especially delicious. To wind down the day she watched a couple of movies and went to sleep.
   Note: If you’d like to visit Bailey, please call ahead and speak with a family member or send an e-mail to schedule a convenient time. Emanuel requests that the number of visitors be kept to a minimum and visits be brief. Physician visits, personal care, treatments, therapy, and consultations generally occur between 7 a.m.-3 p.m., breakfast is served between 7:30-8:30 a.m., lunch: Noon-1 p.m., and dinner: 5-6:30 p.m. Bailey wouldn’t want to miss your visit, so please do call ahead.

Tues., 5-31-05
Bailey waited to have her bath by Amanda. She was still feeling stomach pains so a digestive specialist came in the morning to review her. She gave Bailey some medicine that helped clear out her system and afterwards Bailey felt so much more relaxed and relieved.
   With her stomach pains gone she is now able to concentrate on eating again, so she had some tuna, deviled egg, yogurt, and sips of water. Now that she is at the end of her steroid medication, her cheeks are less swollen and that makes chewing a lot easier. She is feeling much better.

Mon., 5-30-05
Grammers and Great Aunt Molly came in the morning and put together a fun picnic lunch in Bailey’s room. Amanda washed Bailey’s hair and she loved it, as usual. In the afternoon Bailey went out in the neurochair, but was having stomach pains so she went back to her room. Her digestive system may not be working properly.
   John, Pam, Amanda, and Bailey were sad to see Grammers and Great Aunt Molly go; they were a big, big help! They organized, cleaned, ran errands, did laundry, and made special meals. Great Aunt Molly’s artichoke dip really hit the spot! John and Pam were so thankful that they had come to visit.

Sun., 5-29-05
John, Pam, Grammers, and Great Aunt Molly went down to church in the morning while Amanda stayed by Bailey’s side. Bailey ate some yogurt and drank a few sips of water. In her yogurt she had some medicine to help clear her digestive track and even though it didn’t taste very good, she took it anyway. She really wants to get better and is willing to do anything.
   She finished her first week of chemotherapy today and now has a two week break. She did a lot of arm, leg, and mouth exercises, and is working very, very hard to gain her strength. She wants to get better so that she can go home.

Sat., 5-28-05
Grammers (Grandmother MaryAnn) and Great Aunt Molly arrived late last night from Oregon to spend the weekend visiting with Bailey, and showering Bailey, Pam, John, and Amanda with lots of love.
   Amanda gave Bailey a bath in the morning which Bailey loved. Afterward she ate some strawberry yogurt for breakfast. In the afternoon, Bailey took a ride in her neurochair and everyone went down to play bingo together. Bailey won twice and picked out a gigantic purple Care Bear and a cute little doll. They went outside for a little bit to feel some sunshine and then headed back up to the room to rest.
   Bailey has been having some stomach pains, probably as a result of introducing foods back into her stomach and jumpstarting her digestive system. In the afternoon she had chemotherapy and seems to be tolerating it well when combined with the anti-nausea medication.
   John and Pam reviewed Bailey’s MRI results. Her tumor is smaller but it is still there. It is difficult to say much about it right now because the radiation is still working. There appears to be an increase in space between the tumor and surrounding brain tissue, so it isn’t forcing itself up against the brain stem like before, and the amount of hemorrhaging has decreased.

Fri., 5-27-05
Bailey’s skin specialist and surgeon came in to look at her feeding tube today, and since there are no leaks they will start feeding through her G-tube again. That means she doesn’t need another IV, which is great news. Bailey hates needles! She will supplement her feeding tube with an increasing amount of soft foods; this morning she had yogurt, Cream of Rice cereal, and chocolate milk.
   Yesterday Bailey got a package from her schoolmates at Turner Elementary, so she called to thank them this morning. The class put their phone on speakerphone too so everybody could hear, and they all said “Hi!” to Bailey. Bailey was so excited to talk with them! It was wonderful.

Thurs., 5-26-05
When Bailey woke up this morning she said, “A sandwich! I want a sandwich!” While she’s not quite ready for that yet, for breakfast she did have a bite of soft French toast, some Cream of Wheat, and a few bites of yogurt. She did her leg exercises with Pam’s help, and Amanda gave her a sponge bath, which Bailey just loves. For lunch she had some cherry Jell-O with whipped cream and some chocolate milkshake.
   She complained that her arm was bothering her because of the IV, and since it was a little red and had been in for so long, they removed it to give her arm a rest. Her arm felt a lot better. She went down to have an MRI in the afternoon, which takes about half an hour and although she was scared she closed her eyes and did really well.
   Her speech therapist worked with her on opening her mouth wider, chewing bigger and sticking her tongue out. Bailey didn’t want to do any of the exercises, but she is being a trooper and doing them anyway. She also had her second dose of chemotherapy and, with help from some anti-nausea medicine, her body tolerated the chemo and didn’t get sick. At night she wanted to stay awake watching movies and talking, and John and Pam were there to talk with her all night long.

Wed., 5-25-05
Pam washed Bailey’s hair in the morning and for breakfast Bailey had some oatmeal and yogurt. John was certified to change Bailey’s bandages, passing the Central Line Dressing test in front of the IV nurse. Bailey had a little chocolate pudding then got in the neurochair to go outside, but before leaving Bailey said, “Bring the bag of chips!” and she talked about pizza on the ride downstairs. She loves to go outside, but since it is so hot out there they can’t stay very long.
   Her hemoglobin was down so she got ready for a blood transfusion. She also had taken some Tylenol and some Benadryl and started the chemotherapy today too. All of that was too much for her, so while she was sleeping she started throwing up. It was just too much stuff pumped into her at once. She threw up a couple of times and said she felt sick, then got some sleep, threw up again, and then felt better. The nurses couldn’t give her any anti-nausea medication because they had to wait until several hours after the blood transfusion.
   The chemotherapy is in pill-form and is the least likely to have side effects. She’ll take it for five days and then be off for two weeks. She is so strong-willed and is trying so hard to get better. She really wants to come home, and she will as soon as she gets better. She is trying her hardest to do what she needs to be doing.

Tues., 5-24-05
Bailey woke up with quite the attitude today, probably as a result of the steroids and from not having eaten for so long — you’d be crabby too if you hadn’t eaten in two months! She told everyone who came in to visit that they must leave the room! She said she was too tired and didn’t want to talk to anyone.
   John got the hospital staff to move Wednesday’s test a day up, so they went down to an X-ray room. Bailey sat in a chair and had to drink little cups of liquid barium to track her swallowing. Bailey really wants to get a move on this because she wants food, and eventhough it tasted terrible, like a trooper Bailey took it all very well. She had a little applesauce mixed with barium and held it in her mouth a bit, trying to remember how to chew and swallow. Then she had some pear and a piece of a cracker, and she did so well that now she is approved to eat soft foods. The first thing she had was some chocolate ice cream! But she can only have five teaspoons of food per hour. That’s fine because she only really wants just to taste the food.
   She had physical therapy and moved her legs around, and Amanda gave her a nice and warm sponge bath. For dinner she had two bites of mashed potatoes, some mashed up macaroni and cheese, and some egg flower soup, then went to bed exhausted.

Mon., 5-23-05
When Bailey woke up today, the first thing she asked for was something to eat. It is so wonderful that she has an appetite and is vocalizing it! Nurses she has had before continue to come by and be astounded by her progress. She is always asking to go outside, and is working on lifting her arms and building her strength. She got in her neurochair and went down to Bingo, winning a book of funny stories and a little strawberry doll with a My Little Pony.
   She also took her chair down to visit her radiation nurses Mandy and Sally, who didn’t know that Bailey could talk again, and she told them she wanted to ring the bell. After that they went outside into the hot weather and Bailey said, “I want to run through the sprinkler!” Hopefully pretty soon she will be able to.
   Bailey’s speech therapist came and gave her some applesauce and see if Bailey could swallow properly. She did well, so they scheduled an exam for Wednesday that will ensure that food goes down the correct tube and does not aspirate and get infected. Her surgeon came to look at her feeding tube and talk about Bailey having pudding and yogurt and other pureed foods.
   John called country music station KUPL to thank them, Duke’s, Hot Apple Pie, and all the listeners and supporters who came out to the concert last Thursday night. It really meant a lot to John and Pam. KUPL ended up playing the whole conversation on the air Tuesday morning, including when John asked, “Hey Bailey, how do you spell country?,” and Bailey replied, “K-U-P-L!”

Sun., 5-22-05
Amanda stayed with Bailey while John and Pam went to church in the morning. Bailey is begging to eat real food, and since her vision is still a little blurry, she calls out for her mommy a lot during the day. She told John, Pam, and Amanda to “Go get a doctor right now and tell him I can swallow!” The doctors are saying that they need to do a test to make sure she can swallow properly and hold some food. She asks for pizza, sandwiches, and apple sauce. They have to hide when they eat because they feel bad for her. Tomorrow she’ll have a test and hopefully will be eating solid food soon. She also is asking to have a real bath in a bath tub.
   Bailey asked to go outside again, so they got her neurochair and they went out. They couldn’t stay too long because it was so hot and muggy, but it is a nice opportunity to smell flowers and feel the sun. Afterwards they went to the gift shop so Bailey could pick out a gift. She picked out a little purse with a princess, a stuffed frog, and a mirror in it.

Sat., 5-21-05
Bailey was awake most of last night, calling for John, Pam, and Amanda and doing a lot of talking. In the morning her doctor came in and was totally amazed that Bailey is talking — since it is the first time he’s ever heard her speak. All day Bailey kept asking for different kinds of food: popsicles, pudding, peanut butter and jelly sandwiches, soup, saltine crackers, anything! She wants to have real food, but she can’t have anything yet because they are afraid of her getting an infection or pneumonia.
   Amanda read Bailey stories all day long. Bailey wanted to hear one in particular over and over again. It’s a story in a book by Newbery-winning author Louis Sachar. Sachar is the author of Holes, the Wayside School books, and the Marvin Redpost series. The book Bailey most enjoys is Sideways Stories From Wayside School. It’s the first book in the series about a crazy, mixed up school. This book contains lots of funny stories about the students and teachers at Wayside School. Bailey’s favorite is about a teacher named Mrs. Gorf who turns all of her students into apples. It is so funny Bailey can’t stop laughing!
   Bailey went for a ride in her neurochair down to the lobby and outside. Amanda wore these huge clown sunglasses and Bailey was laughing so hard watching her sister talk to strangers with big silly sunglasses on. She gets pretty tired after the neurochair sessions so she conked out right away and went to sleep early.
   Thank you to Dirk, Greg, Jez, and Marci, The Conductor, for dedicating their admission and merchandise proceeds from their show tonight to the Bailey Santana Fund.

Fri., 5-20-05
Amazing news — Bailey is talking!
Last night she seemed to be struggling to communicate, and was waking up a lot and crying out during the night. In the morning it sounded as if she was trying to speak, and Pam listened carefully… Bailey was saying, “I want… I want…” and Pam asked, “What do you want Bailey?” and she replied clear as a bell, “I want… Amanda!”
   It was incredible! Amanda came in and John, Pam and Amanda started asking Bailey all sorts of questions. Bailey didn’t skip a beat, and in fact, knew all the names of every single animal back home, even each cow’s name! She also said, “I love you” and that she wanted a Popsicle. “What flavor do you want Bailey?” asked Amanda, “Grape? Strawberry?” Bailey said, “No… Raspberry!” So they got her a raspberry Popsicle and she enjoyed it so much.
   All day doctors and nurses have been coming by because they heard she is talking and wanted to see it to believe it. They were amazed. At one point, Bailey said, "Help me" and started crying, and said that her hand hurt. It is the hand with the IV in it, and doctors are going to check it out. She said she is tired and wants to sleep, but it is hard because of all the noises, bells and whistles from the medical equipment, so she took some Tylenol and will wear earplugs tonight to help her get some rest.
   Last night in Portland, Oregon, local country station 98.7 KUPL put on a benefit concert for Bailey with Nashville’s hottest new group, Hot Apple Pie, at Duke’s Bar & Grill. It was awesome! The place was packed! John and Pam were touched by this very special event and by everyone who helped make it happen. Thank you so much to the hard working staff at KUPL and Duke’s; Hot Apple Pie band members Brady Seals, Mark "Sparky" Matejka, Keith Horne, and Trey Landry and their manager; and to family and friends [all Bailey’s new friends too!] who came to the show to share their support for Bailey!
   Thank you — everyone! We couldn’t get through all of this without you!

Thurs., 5-19-05
In the morning John, Pam and Amanda took a CVC Central Line Bandage class to learn how to take care of Bailey’s bandages on their own. While Bailey was in her neurochair, she grabbed her bed railing and held on tight. Her speech therapist came to work on tasting, hearing, moving her eyes, and swallowing. Bailey would put her tongue out to taste things, like lemonade, and she really liked the scent of a chocolate cupcake. Her therapist said, “Gee…, she must really like chocolate!!”
   When Amanda was reading to Bailey again today, Bailey laughed and laughed, and in her eyes they could see her laughter. It was a very happy moment. She also has been crying though, and is probably be more and more aware of her discomfort. John, Pam and Amanda have been trying to help her communicate, asking her questions and having her close her eyes for 3 seconds if the answer is yes.

Wed., 5-18-05
Today was Bailey’s last treatment! Bailey’s nurses Sally and Mandy were wonderful to her, and gave Bailey butterfly and dragonfly balloons and some little gifts. John and Pam gave Bailey’s radiation nurses a little thank you gift, and everyone went out in the hall for Bailey to ring the official bell marking her successful completion of radiation. They rang and rang that bell, and people were cheering!
   Bailey rode around the 9th floor in her neurochair while aunt Selena, Grandpa Jake “Papa,” and cousin Kylie were getting ready to head back to Oregon, and Bailey picked up her right hand and tried to wave goodbye. It was the first time she has moved her right hand! She did that a few times.
   When Amanda was reading her a funny story, Bailey started laughing. It was so wonderful to hear her giggle and laugh! She kept lifting both of her arms up and down. She is more and more alert with each passing day, and probably more aware of what is going on around her. That being said, she is crying out more often and having difficulty sleeping through the night. Please continue to pray for her recovery!

Tues., 5-17-05
Bailey had therapy in the neurochair again. This time she got to go all around the 9th floor and see everything. All the nurses were saying “Hi!” to her. In the afternoon she went down for radiation and that went fine. Tomorrow is her last day of radiation treatment!
   Bailey’s occupational therapist came and used different smells, touches, and tastes to stimulate her senses. She also had a speech therapist to help Bailey exercise other means of communication until she is able to speak again. Her physical therapist worked with Bailey’s arms and legs. She had Bailey bend her knees then asked her to straighten them. Inch by inch Bailey was trying so hard!
   A mother of a cancer-survivor offered to sit with Bailey and keep her company so that John, Pam, Amanda, Jake, Selena, and Kylie could all share one dinner together off the hospital campus, which they did.

Mon., 5-16-05
Pam washed Bailey’s hair and it felt so good that Bailey fell asleep! So Pam let her rest and finished washing her hair later. When she asked Bailey if she would lift her head up to look at Marissa, Bailey actually lifted her head up all by herself!
   Nurses brought in a neurochair, which is basically a wheelchair that goes flat so that Bailey can get into it. It will help her make the transition into sitting upright again. They let her sit in it for 15 minutes, enough time to reactivate several muscles she hasn’t used in a while. Tomorrow she’ll go around the 9th floor in the chair as a form of therapy.
   Bailey only has two more radiations left! Her doctor approved a glyconutrient supplement to help boost healthy cells and her immune system during chemotherapy. Bailey’s surgeons did a culture test to see if the area around the internal shunt is infected. They will have the results within two days. Unfortunately Bailey’s feeding tube is leaking. To avoid infection, her bandages must be cleaned and changed four times a day. The steroids she must take interfere with the healing process, so they have to stop using the tube and nourish her intravenously for now.
   Doctors at M.D. Anderson have meetings and talk about how amazed they are by Bailey’s progress. They can’t believe she is doing as well as she has been doing! She is fighting hard and is going to beat this.

Sun., 5-15-05
Cousin Kylie stayed with Bailey while everyone else went to church. Bailey has been very vocal today, trying very hard to speak but not quite doing it. She is crying a lot, and Pam is lying down next to Bailey to comfort her, and Amanda read her some stories. John has been asking Bailey lots of questions like, “If your doll’s name is Tiffy, close your eyes and hold them closed.” She does well, but tires easily.
   To keep her mouth moist, they sometimes use a little sponge swab. Some water went down her throat and she started to gag, then started coughing! And a little later she coughed on her own too. This is great news because it shows she her gag reflex works. That may seem small but every little bit counts!
   Pam’s friend Kathy, who lives in Houston, brought everyone lunch today and opened her home to relatives while visiting.

Sat., 5-14-05
Grandpa Jake “Papa,” aunt Selena, and cousin Kylie Farmer [Pam’s sister and her daughter] arrived in Houston early this morning to visit Bailey. Upon seeing Papa, Bailey started crying. She was so happy to see him and that is the only way she can express her emotions right now. She moved her legs a lot when Selena and Kylie were there, and Kylie asked Bailey to squeeze her hand and she did several times. All day she was moving her mouth, trying to say something.

Fri., 5-13-05
Today was a wonderful day — Bailey moved out of ICU and back to the 9th floor [Note new room: G956]. She continues to impress her doctors and nurses with her progress. After today’s radiation treatment, Bailey will complete her last four sessions next week.

Thurs., 5-12-05
First thing in the morning, Bailey went down to surgery to have her external shunt replaced with an internal one. She did really well, and came back to the room around 10:30 a.m. to rest until radiation at 2:30 p.m. When her nurses put her mask on, she cried a little bit, but it went really well. Hopefully Bailey will be able to move out of ICU and back up to the 9th floor tomorrow.
   Two doctors from the 9th floor came down to visit Bailey, and they were really amazed with her improvement, especially that she was looking right at them not just staring straight ahead. She is still being vocal, which is very good. She hasn’t been moving her right arm very much, so her nurse gave her a little pinch on her right hand and Bailey made a noise. To see that Bailey is doing better has been very reassuring for everyone. Pam said prayers and sang Bailey her nightly song, as usual. John and Pam are so grateful for all the people out there who are also praying for Bailey’s recovery.

Wed., 5-11-05
Bailey started the morning out with facial expressions and noises. She is trying so hard to communicate. Pam, John, Amanda, and Marissa sat around her bed and sang songs and read books to her, and asked questions for her to respond to by blinking. She had her legs and ankles moved around for physical therapy, then went down for radiation, which went well. She didn’t cry this time. She only has six more treatments to go!
   Pam and John talked with doctors about Bailey’s surgery tomorrow morning to replace the external shunt with an internal one. In the afternoon Bailey started making some very loud noises, trying so hard to vocalize. It shows that she has her emotions, which is very positive, and it is nice to hear her voice even if it is screaming, but it is also very hard for John and Pam to see her crying out like that. After her bath tonight, she started screaming again whenever a bandage was taken off, probably because she is afraid of being poked with a needle, which is one of her biggest fears. John and Pam held her and calmed her down, told her they loved her, and that everything was going to be okay.
   John, Pam, and Amanda donated blood today. If their blood type matches Bailey’s then Bailey will receive their blood for necessary transfusions, otherwise their donations will go to the blood bank for others in need, like Bailey. In the evening, Pam had a massage at the Ronald McDonald House courtesy of volunteer massage therapists. She said it was absolutely wonderful.

Tues., 5-10-05
This morning and throughout the day Bailey was making noises with her mouth, as if trying to communicate. She is trying so hard to speak and was so much more responsive today than yesterday. She went down for radiation and, as she was getting ready, almost started crying. Pam told her that everything was going to be okay, and she calmed down. She seems to be visibly aware of what is going on, which is a great improvement.
   Pam and John received special t-shirts made by [Pam’s sisters] aunts Nancy, Jean, and Selena, and Grandpa Jake “Papa.” They have really cute pictures of Bailey on them and John, Pam, Amanda, and Marissa wore them all day, getting lots of compliments. They also sent materials for making homemade pillows so Pam, Amanda, and Marissa can stay busy making fleece pillows for other kids at the hospital who are also sick.

   Also this afternoon, Bailey’s teacher Heidi stopped by with Denice and Patti to visit uncle Jamie, who is taking care of things at John and Pam’s small farm in S.E. Salem (including 19 animals!) and the Santana Crane, Inc. business while the family is in Houston. They brought him a special gift from the Turner Elementary staff: a whole bunch of wonderful home-cooked dishes and dessert, two movie passes, and a gift certificate for pizza! It was just what he needed!

Mon., 5-9-05
In the morning Bailey’s doctor asked her to move her left foot, and she did it! This is so great because it’s the first time Bailey has responded like that. Her doctor said it was amazing and very positive. In the afternoon she went down for radiation with John and Pam, Marissa, Amanda, and Kyle. Bailey had her eyes open the whole time and, since her head is less swollen than before, she wore her mask with less discomfort. Since her surgery that put in the external shunt, the pressure level in her brain dropped a whopping 18 points to normal. Another result is that she is moving her eyes from side to side, whereas before she only looked straight ahead.
   Bailey also received a package in the mail today from RCA Records Nashville — two album CDs [White Christmas and Wild Angels] autographed by Martina McBride! Pretty neat! Lots of positive vibes today, which is just what Bailey needs to get better. At night they did their reading, prayers and nightly song, and now Bailey is getting some rest. Thank you to everyone following along and praying for Bailey.

Sun., 5-8-05
Bailey appears to be experiencing some relief from the temporary shunt. She opened her eyes a lot and could move her arm. Her doctors say this is a good sign. No tests today and no radiation today, being Sunday.
   Pam and John started Mother’s Day by going to church. They spent the rest of the day at Bailey’s bedside with Amanda, Marissa, and Kyle. They celebrated Pam’s special day with a nice family-style Mother’s Day dinner with Bailey in her room.
   Pam and John continue to meet friendly, wonderful, and kind families at the M.D. Anderson Cancer Center and Ronald McDonald House who like them, have left their homes and families to travel to Houston in search of healing their children. Special prayers for all mothers today.

Sat., 5-7-05
Last night’s MRI confirmed the swelling in the upper ventricles of Bailey’s brain. It is causing pressure. They transferred Bailey to ICU for surgery and put in an outer shunt to drain the excess fluid and relieve the pressure in her brain. Right now, she’s resting in ICU with her family.
   This sudden change in Bailey’s condition is difficult because she had such an amazing day yesterday. She’s going to pull through and get back on track. Please help us continue to pray and stay focused on God’s Word as a source of hope and encouragement. I know the Lord is always with me. I will not be shaken, for he is right beside me. - Psalm 16:8.

Fri., 5-6-05
When Bailey’s doctor examined her today, he said she is looking more alert than before. Down at radiation, Bailey tried really hard to form words with her mouth, and started to cry. She moved her head too, and moved her legs during therapy.
   John and Pam talked with doctors about last night’s CT scan. The doctors could see a change in the tumor, but couldn’t determine whether the change was good or bad, only that it was different. She has an MRI scheduled for tonight. They are concerned about the swelling, pressure, and fluid in her brain.

Thurs., 5-5-05
Today was another busy day. Bailey’s surgery to insert her new feed tube directly into her stomach went well this morning. The procedure took about 15 minutes and recovery about three hours. Right after recovery she had her daily radiation treatment. The special radiation mask she wears is getting too tight because her face is swelling due to steroids. The doctors are working on a solution to remedy this problem. Bailey also had a CT scan and XRAY today. Doctors will discuss results with Pam and John tomorrow.
   Today Marissa returned to Houston with Amanda’s friend Kyle. Amanda made Marissa a birthday cake at the Ronald McDonald House and altogether they celebrated Marissa’s April 29th 15th birthday.

Wed., 5-4-05
Bailey had her radiation treatment and enjoyed a day of pampering. Bailey’s Beauty Shop was opened for business as Pam trimmed Bailey’s hair, with the help of one of the therapists, and Amanda gave Bailey a manicure and pedicure. Bailey’s “personal trainer” helped her with some physical exercises and she also had a session with her sensory therapist. Bailey opened her eyes quite a bit and moved more than usual. These are good indicators.
   At midnight Bailey’s feeding tube through her nose will be removed in preparation for her surgery tomorrow. At approximately 8:30 a.m., doctors will insert a new feeding tube directly into her tummy. The surgery should last 1-2 hours. Support, prayers and positive thoughts keep coming in from all over, and people are doing some special things out of pure concern, care, and love for Bailey. Please keep them coming, they are helping a lot.

Tues., 5-3-05
Bailey had her daily radiation treatment. She opened her eyes quite a bit throughout the day, and was moving her mouth a lot as if trying to say something. Pam, John, and Amanda went to dinner at the Ronald McDonald House. They are encouraged, inspired, and uplifted by families’ stories of hope and triumph. At M.D. Anderson, they feel lucky to be in such a supportive environment of doctors, nurses, physical therapists, and families.
   Bailey received more darling pictures from classmates and friends today. Bailey loves them and they are perfect for decorating her room. A 7-year-old boy outpatient at M.D. Anderson stopped by to meet Bailey today. He watched Bailey sleep and said, “Bailey is going to be even more beautiful when she wakes up,’cause she’s getting lots of beauty sleep!”
   Today we posted a few photos from Texas at the beginning of Bailey’s photo album on her main page.

Mon., 5-2-05
Doctors tested Bailey’s ability to hold down liquids today. The test determines which kind of new feeding tube they will use. She did well on the test and will have surgery Thursday to insert the tube into her tummy, instead of it passing through her nose. To boost her low platelet count, Bailey had a platelet transfusion today.
   Bailey has a wonderful doctor who really cares about her. He did say that he wished that by now Bailey was showing more signs of improvement. A lot has happened to Bailey in a very short time period, and while she could be better, she could also be a lot worse too. Pam reminded Bailey’s doctor that it also took Bailey a very long time to shoot her first hoop, but with her spirit of determination, she did it.

Sun., 5-1-05
They went to church this morning and Bailey had her bath and physical therapy. She has a very busy week coming up. In addition to radiation, she will have a test tomorrow morning to determine which kind of feeding tube is best suited for her. The test should take 2-3 hours and requires an empty stomach. On Thursday, doctors will surgically insert the tube into her stomach. This tube will be more comfortable because it won’t go in through her nose. She will also have an MRI this week to see how effective radiation has been on her tumor. Please send up your prayers, this week especially.

Sat., 4-30-05
Today was a rest day for Bailey, now that she has completed three full weeks of radiation. She’s been opening and closing her eyes a lot, and responding to questions by blinking. She is drooling less than before, which is a really good sign. John and Pam talked with the doctors today about doing a procedure to surgically insert a feeding tube directly into her stomach. In the afternoon, she was sporting an adorable Hello Kitty dress!

Thurs., 4-28-05
Today was another day of the regular routine. Pam put a blue bow in Bailey’s hair, and then had John wear it for a while too. John goes down to radiation with Bailey every day, and each time he sits with her and tells her in her ear how much he loves her. He tells her that she’s his best little buddy, that she’s going to be okay, that she’s a tough little girl and that they’re going to get through this together. John jokes with her like he always has, “Now come on Bailey, you don’t want me to beat you at thumb wrestling again, do you?”

Wed., 4-27-05
Bailey had her bath and physical therapy, as usual, and went down to do radiation in the afternoon. Bailey is hanging in there and staying strong. Love and support continues to pour in from everywhere. The positive energy encourages John, Pam, Amanda, and Bailey so much, and they really appreciate everything people are doing for them.

Tues., 4-26-05
Bailey moved her arms again during radiation today. After radiation, she had a blood transfusion because her red blood cell count was down a little bit. Radiation works better when the red blood count is higher. Her vital signs are still look good. She rested a lot today, probably a result of taking Tylenol after the blood transfusion which made her sleepy.

Mon., 4-25-05
Bailey really resisted treatment during today’s radiation session. She was using her neck muscles, turning her head and putting her arms up to fight against wearing her mask. Such energy and fighting spirit is a very positive sign because it shows she isn’t giving up in her battle against this tumor. John and Pam aren’t either.
   The protective mask she wears during radiation is becoming more difficult to fit because her face has gained weight, a result of the steroid medication. They will refit it because the mask also marks where radiation is aimed, and it must be precise to be effective.
   Grandpa Joe and Elaine headed home today after a weekend visit.

Sun., 4-24-05
Today was a rest day for Bailey. Pam, John, and Amanda went to Sunday services at M.D. Anderson’s chapel to pray for Bailey, and for all children and adults who are sick. They gave thanks for all the help and support they’re receiving.
   Pam and Amanda have been decorating some little beanie hats they bought at the Dollar Store for Bailey to wear when more of her hair falls out. They are purple, blue, and pink and are Bailey’s perfect size. Pam and Amanda are decorating them with beads and they look so fabulous on her!

Sat., 4-23-05
Pam, John, and Amanda washed Bailey’s hair with a little scrubber today. They put a bunch of French braids in her bangs and flower clips in her hair to make her look cute, but with Bailey it doesn’t take much to make her cute because she already is! Her hair is starting to fall out in little clumps around her ears where she receives radiation.
   Pam went down to play Bingo and won Bailey a stuffed piggy, a stuffed cat, and a coloring book. Her room literally is stuffed with stuffed animals! Pam, John, and Amanda read all the e-mails that come in each day, and want everyone to know how much they are appreciated. People from all over — friends, family, and friends of friends, even those who’ve never met Bailey, but have happened upon her web page — are all praying for her recovery and sending their love. The support and positive energy has given the family so much strength.

Fri., 4-22-05
Bailey had her last radiation of this second week and worked up to her maximum dose of Depakote, and now has a couple days off treatment. While she rests all day and can’t talk just yet, she is moving her arms a little bit more than before, which means she is on the path to progress. It is difficult to be patient. The doctors say it could take Bailey another two months for her to regain her full consciousness and ability to speak.
   Back home, Bailey’s kittens are starting to walk! They are only about the size of little cordless phones but are as courageous as lions, climbing out of their box and scampering around everywhere. Bailey’s dog Shelby misses Bailey’s big, loving hugs so much; Shelby sleeps in Bailey’s room each night, waiting for her to come home.

Thurs., 4-21-05
Bailey had her fourth session of this week’s radiation. She is still doing a lot of resting. It is so hard for everyone to imagine that just last month Bailey was running around, singing and dancing like a normal, happy little girl. It is so painful for Pam and John to see her like this; they wish there was something they could do to help her and comfort her. She must be so scared right now, just lying there, not knowing what is going on and not able to ask.
   She listens to her Christian CDs during the day. They are prayer songs that remind her how much God loves her, and that He is going to take care of her and make her better. With music, cards on the walls, and her family at constant vigil at her bedside, Bailey has a positive, loving and prayerful environment. Thank you so much for sending your prayers and positive energy Bailey’s way.

Wed., 4-20-05
Bailey had her hair cut this morning. This was a pretty big event because her hair, when fully brushed out, goes all the way down to her bottom! John and Pam put it in long pigtails and snip snip! And then mailed her pigtails to Locks of Love, an organization that will make a wig for Bailey with her own hair. She looks really cute with short hair! It will also be so much easier to manage, and on top of that, the mask she wears for radiation is a lot easier to take on-and-off too.
   She went down to do therapy again today. Sally and Mandy, down in the radiation room, are really wonderful with Bailey. They love to see her each day and always take special care of her, putting on her CD and doing everything they can to help her feel more comfortable.
   There are so many special things that everyone is doing to help Bailey. John and Pam are totally amazed and blown away by the generosity and love coming in. They haven’t had the chance to thank everybody personally, and there are so many people to acknowledge! Because they are still in the midst of a rough battle and constant vigil alongside Bailey, it’s hard to respond to all the kind and generous e-mails, cards, and gifts they’ve received. They want you to know how thankful they are for your special thoughts and prayers. It is comforting to know there are so many wonderful people praying for Bailey.

Tues., 4-19-05
Bailey had radiation again today. Her medicine cart that goes with her is by far the coolest — along with the standard feed and steroids bags, Bailey’s cart carries a stuffed pony, a stuffed pig that talks, some rings that light up, some stuffed fish, and her $2 from the tooth fairy.
   Bailey started taking a very low dose of Depakote through her feeding tube three times a day. It enhances radiation therapy by separating healthy cells from cancer cells, and in this way helps to protect the good blood cells during the radiation process. It is a clinical trial and therefore completely new. John and Pam trust Bailey’s doctor and they believe there is a chance that this could help Bailey immensely. Thank you for your prayers, please keep it up! We are not through this yet.

Mon., 4-18-05
Bailey started her first day of the second week of radiation today. It is still too early to tell if the radiation is helping. She opens her eyes and moves her mouth a little bit during the day, as if she wants to say something but can’t. She is fighting as hard as she can.
   The Catholic Sentinel newspaper recently published Bailey’s story.
Peace and prayers to all.

Sun., 4-17-05
Bailey rested all day today. Her vital signs still look good and she’s recharging her batteries so she’s ready to begin her second week of radiation tomorrow. Pam got Martina McBride’s CD to play “When God Fearing Women Get the Blues,” which is Bailey’s favorite song to sing-along to. Bailey can listen to it when she is in the radiation room.
   They went to church at 10 a.m. at M.D. Anderson’s chapel and it was a really nice service. Everyone goes around saying their names and where they are from, and they share prayers with each other. Afterwards they went for a little walk.
   Bailey cannot talk or sit up in bed yet to give hugs and kisses like she loves to do, but everyone is praying for that time to come. John, Pam, Amanda, and Marissa believe in the power of prayer and they know God performs miracles and will heal their little angel.

Sat., 4-16-05
Bailey had a break from her treatment today and is now one full week into radiation. John and Pam are preparing for the next step as they know the radiation will only keep the tumor at bay. They don’t want Bailey to have chemotherapy so they are busy exploring all possible options by reading books, researching on the Internet, sending e-mails and making phone calls to professionals in the field and families who have experienced similar circumstances.
   They washed Bailey’s hair, braided it, and gave it a little trim. They’re making sure it stays longer than 10 inches in case they want to make a wig for her with her own hair because doctors say her hair will begin to fall out within two weeks of beginning radiation. John, Pam, and Amanda went to Bingo and Amanda won Bailey a little doll with all sorts of accessories!
   Another amazing thing happened today: Bailey received a huge basket of goodies from Keefer Crossing Middle School in Houston. The basket was so full of juice boxes, granola bars, crackers, and Oreo cookies that volunteers needed a handcart! It also contained cards from the students and $60.67 in donations. It is another example of the amazing kindness and generosity of people touched by Bailey. John and Pam are so thankful for all the support and prayers from so many people from all over. It is helping to make such a difference.

Fri., 4-15-05
Today was Bailey’s sixth round of radiation treatment. The doctors believe she is doing well because her vital signs look good. Another sign of her doing well is that she had her oxygen supplement tube removed today.
   She is sleeping a lot more these days, which is a side-effect of the radiation. She opens her eyes a lot less, but that is good because if she was opening her eyes a lot she would need artificial tears. She is resting, rejuvenating herself, and gathering strength, which she is going to need later on down the road.
   At bedtime, Pam sings, “I’ll love you forever, I’ll love you for always, as long as I’m living my Bailey you’ll be.” It has been their ritual every night since Bailey was born. Before Bailey got sick, she and Pam would sing it together. Bailey would say “Mommy” instead of “Bailey,” and then they would say their prayers.

Thurs., 4-14-05
Today Pam bought Bailey a special new nightgown. It is pink and has Barbie on it. It’s better for Bailey because it isn’t as hot as the other nightie she has, plus it’s more fun.
   Bailey listened to some music today, and had her daily bath and physical therapy session. She had another round of radiation, with different types of angles that are finely tuned to get at the tumor more effectively. She is fighting and holding her own.
   Her doctors are considering taking her off the supplemental oxygen because her breathing has improved and they don’t want her to be dependent on it. John and Pam are doing an incredible job ensuring Bailey receives the best possible care and they are looking for more ideas by reading books and constantly asking the doctors for their
opinions.
   Everyone is working so hard for Bailey. Please keep it up!

Wed., 4-13-05
Pam was the first to notice something a little different about Bailey late last night… she was missing a tooth! John, Pam, and Amanda searched around and found it. The Tooth Fairy came last night and left Bailey a whopping $2 under her pillow.
   Today Bailey started a new approach to radiation. Her previous four treatments were emergency radiations, but now the process is calibrated to focus more accurately and effectively on the tumor itself. She is resting a lot and is less alert than before, a result of either the radiation treatments or the tumor swelling. It is pretty tiring just to get to-and-from the radiation room; she is moved from her bed to a mobile bed all the while hooked up to her oxygen, IV and equipment, and then onto the radiation bed. It’s a lot of moving around, but she is strong and tough, a real fighter, and she’ll pull through, we know she will.

Tues., 4-12-05
Bailey got a new bed today! It’s an air mattress that pumps air to different places to stimulate the sections of her body that are less active, such as her legs and her back. She had physical therapy and her bath too.
   Bailey had her fourth radiation this afternoon. It is still too early to know the effectiveness of the treatment but she has been really tired from either the radiation treatments or the constant pressure on her brain from the tumor.
   John, Pam, and Amanda moved their things into a room at the Ronald McDonald House today though they still spend day and night in Bailey’s room at her side. Her cousin Shannon flew home this morning and will be missed by all.
   We’re so thankful for all the special people who have come to our aid by praying for Bailey’s recovery, sending special heartfelt e-mail messages, cards, letters, and gifts to lift our spirits, and organizing fundraising efforts and making contributions to Bailey’s fund for her care.

Mon., 4-11-05
Amanda and cousin Shannon gave Bailey her workout today, and she had her teeth brushed and her daily bath in the morning. When her Dad moved from one side of the bed to the other, she really opened her eyes wide and followed him.
   Bailey unfortunately has the start of a bacterial infection, so her doctor put her on antibiotics to clear that up. In the afternoon she had another round of radiation treatment. The doctors won’t know for one-to-two weeks how effective this treatment is in reducing the tumor’s swelling and size, but we are all praying that it does. We are still researching and considering other possible treatments and clinical trials, including those outside the U.S. If you have heard of something noteworthy, please let us know.
   Pam and John want to express their thanks to Molly Meg for her love, encouragement and support. She came with them to Houston to help get things set up for Bailey and flew home yesterday. Her multi-tasking was a tremendous help; she sat by Bailey’s bedside, called doctors, arranged logistics, took notes, organized prayer sessions, fielded calls, and coordinated all sorts of details. Her upbeat, determined attitude and love for Bailey cheered everyone on and her positive spirit was undiminished.

Sun., 4-10-05
Today was a rest day for Bailey. She had her daily bath and exercised with her boots, but didn’t have radiation or therapy. The nurses reposition her every hour to help with breathing and circulation. She is more alert than before, and even a little feisty, moving her head by herself in the direction that she wants to go, as opposed to where the nurses want her to go! This is good to see because it means she is gaining strength.
   Bailey is a big hit with everyone here; people are really going out of their way to look after her. Nurse Ryan from Texas Children’s called today to check on Bailey and a lot of people keep popping in to ask for Bailey’s web page address so they can see pictures of her before she was sick. That way they can see what a tremendous personality Bailey has, how spirited and affectionate she is, and all the people who adore her. It really warms our hearts to know how many of you are checking the web page every day and praying for her. We love our little Bailey so much and we know you do to.

Sat., 4-9-05
Bailey has had two radiation treatments now and has done well. The doctors at M.D. Anderson made a special trip to the hospital today to do her second treatment, even though it was a weekend and they didn’t have to come in. Her treatment is pinpointed at the tumor and takes just a few minutes. Bailey wears a protective mask that was made just for her that allows the doctors to focus right in on the tumor. Her treatment routine will be five days a week for five-to-six weeks.
   If you have credible information from trustworthy sources regarding other clinical trials or work being done that could help Bailey, please let us know. We are still researching and considering every avenue of treatment. Thank you so much for all of your love and support.

Fri., 4-8-05
Today Bailey moved from Texas Children’s Hospital to nearby M.D. Anderson Cancer Center. So many people are praying for her recovery, and we need those prayers to keep coming.
   Bailey had another CT scan at M.D. Anderson and began her first phase of radiation treatment. She made it through okay and is fighting strong!
   Bailey’s sister Marissa flew home to Oregon so that she could check-in with school. Bailey’s other sister, Amanda, is taking a semester off from the University of Oregon to stay constantly by Bailey’s side. Both Amanda and Marissa have comforted Bailey so much.

Thurs., 4-7-05
Bailey is a strong little girl trying very hard to overcome this. Even though her breathing and oxygen-intake is not as good as it needs to be, she is still keeping up with her physical exercise routine and opening her eyes throughout the day. She especially enjoyed books her cousin Shannon read to her today and her favorite was the one about Pooh’s Heffalump Movie. Bailey was also so happy to hear from back home that her newborn kittens, whose birth she had watched prior to leaving for Houston, had just opened their eyes today!
   This afternoon, doctors from the M.D. Anderson Cancer Center came over to Texas Children’s Hospital to do an evaluation to consider the possibility of radiation, a therapy John and Pam had hoped to avoid because of the serious risks associated with this treatment, but it has now become necessary to reconsider since the steroids were not successful in shrinking Bailey’s tumor.
   Family, friends, and even people Bailey has never met before are praying for a miracle, sending cards and emails, organizing prayer groups and fundraisers, and offering assistance and services for Bailey. Fr. George called from Queen of Peace Church in Salem and, over the speakerphone, said a prayer with the family. The cards get posted on the wall and window alongside all the letters from Bailey’s first-grade classmates at Turner Elementary and the letters from Great Aunt Maryanne’s fourth-grade class in Maryland. Bailey also received a very nice blanket from the Victoria Faith Foundation.
   John and Pam are so grateful for everyone’s love and support during this difficult time, and they read the cards and emails to Bailey each day and the positive words of encouragement help give all of them strength.

Wed., 4-6-05
Bailey had a pretty good day today. She was transferred last night to a private room - Room 717 - in the Progressive Care Unit (PCU). Although her latest MRI test showed the tumor had not reduced in size and some bleeding was observed, she has amazed everyone with her courage and strength.
   Today, Bailey kept her eyes open a lot watching cartoons and all the people coming in-and-out of her room, and was especially entertained by sisters Amanda and Marissa decorating the big white board in her new room with fun drawings and words of love. She got her hair washed and French-braided by Amanda, and yesterday Aunt Nancy and Marissa painted her fingernails and gave her a pink pedicure. The therapy nurse was in to help Bailey do a little exercising with her therapy boots — she wears them 2 hours on and 2 hours off. Bailey also weighed in today at 56.4 lbs which the family thought remarkable since her usual weight is about 60 lbs and she had been off solid foods since 3/29/05 when they first arrived in Houston. This afternoon they did more singing and praying, and Bailey loved listening to phone calls from family.
   Tomorrow, Bailey will be transported to nearby M.D. Anderson Cancer Center for further treatment evaluation. Please continue to keep her foremost in your thoughts and prayers.

Tues., 4-5-05
Bailey had a good day today. She is still being closely watched in PICU. Her breathing is fine and the feeding tube still in. This afternoon she kept her eyes open watching another favorite cartoon, Rugrats. The therapy nurse came with some cute leg tights and little therapy ‘workout’ boots to help with foot position. An MRI has been scheduled. The family is grateful for the outpouring of love and support. They couldn’t remain strong for Bailey without your messages of hope, prayer, and cheer. Keep’em comin’!

Mon., 4-4-05
Bailey’s condition remains stable and they look for small improvements each day. Yesterday’s high point was taking Bailey off the ventilator. With a breathing tube no longer in her throat, she is starting to move her mouth and tongue again. She has also been able to do some coughing which indicates her gag response has improved significantly and they are exercising her hands to re-strengthen her grip and squeezing response. She is still on a feeding tube and has, thankfully, never been in a coma.
   Bailey is a strong little girl and her vitals look good. She is monitored 24-hours a day in her PICU room. The nurses shine a light in her eyes to check her pupils every 30 minutes and record her heart rate and blood pressure on her leg monitor every 15 minutes. Her alertness was also confirmed when they noted her blood pressure spiking when family briefly left the room and normalizing again when they returned.
   Although not yet able to talk, Bailey answers questions by blinking her eyes for “yes” and keeps them closed for a “no.” Because of the energy she uses to breathe and trying to keep her eyes open, it is important to keep her well rested, stress-free, and in a prayerful, positive environment. Please continue praying.

Sun., 4-3-05
Bailey is still having good and bad days. She is a real fighter and her doctors have been blown away by her remarkable progress while her condition remains critical.
   Good news! This morning doctors took Bailey off the ventilator. They have seen more movement in her eyes and have gotten more grip in her hands. Family and nurses are working with her on various exercises to stimulate or increase movement with her tongue, eyes, hands, and legs.
   Since Wednesday’s CT scan, doctors and nurses have been monitoring her tumor by continually checking her responses, including: examining her eyes and pupil dilation every 30 minutes. They have found no evidence of further bleeding. She will soon be scheduled for another MRI.
   On Saturday, Bailey had two chest x-rays — the usual one in the morning to monitor her lungs and another in the afternoon to make sure the feeding tube is correctly positioned. She is still using a feeding tube for nourishment and receives steroids through her IV.
   The family has brightened Bailey’s room with balloons, songs, and their upbeat style, and urges you to continue praying hard for a miracle.

Sat., 4-2-05

Bailey has had a good day today. She was more responsive and her vitals are good.

   The highlight of the day was hearing get well messages from friends and family by speakerphone, assisted by Pam and John. She also more than enjoyed her favorite cartoon SpongeBob SquarePants on a TV right by her bed and kept her eyes open for the entire show!

   Because it takes a lot of Bailey’s energy for her to breathe, she’s been on a ventilator. She has a feeding tube to provide nourishment due to difficulties swallowing and has a permanent catheter in her chest for IV fluids. She receives a chest x-ray every morning to monitor lung fluids and the reports have shown her lungs to be clear.

   Bailey’s doctors have been unable to determine if the steroids are shrinking the tumor but, thankfully, the bleeding from the tumor enlargement in the brain has subsided.