Heaven has a new angel - Helen passed away at her home last night, December 10. Please visit her site and let her family know they are in your thoughts and prayers.


This is the message from Aaron Hunter's site. Please visit his site and offer your prayers. The link is listed above.

**Well everyone thank all of you for all your thoughts and prayers Aaron is now resting peacefully in HEAVEN he WON his battle and the fight is over!!!!!**



**Attention All Prayer Warriors**

There seems to be a lot of families dealing with devastating news at this time. Please visit these families and offer them your prayers and support.

Ben Bowen - Tumor continues to grow at a rapid pace

Aaron Hunter - Is at home now, but on Hospice

Helen - She and her twin brother will have their 1st birthday this month. Helen has been sent home - St. Jude cannot offer her any more help.

Bret Brady - Tumor has grown and is now dealing with Hospice as well.

Jay - New Growth is a tumor

Links to their sites are listed above.

-Dee









Here is another update from Angi -

Dear Dee,

Sorry I didn't get back with you sooner to update the site. We arrived home on Thursday, December 2. I think from all the hustle and worry I was finally able to relax when we got back to Beckley.

Taylor's hearing test results showed that she still has some high pitch hearing deficit in the right ear and is just a little more than her last hearing test in June. The left ear seems to be ok. They said she doesn't need any hearing devices as of now and that her hearing could still get worse over time due to the radiation. They check it every 6 months.

Everybody was so impressed with how well Taylor is doing. She loved seeing all her old friends and the staff. She gave everybody a huge hug and kiss. I think her and Alex Molnar hit it off. Vanessa his mother got pictures of the two kissing. It was so cute. We saw many of our Target families and some who were returning for a checkup. We went to visit them at Target on that Monday and we also saw Ms. Clea and Karri and Damon.

While we were home we visited my relatives and Taylor always enjoys being the center of attention. We are trying to get things ready for Christmas. I can't believe it is in 19 days. This year has flew by even through all of this battle with Taylor. It will be a year in January when the tumor was found and she is still doing good and making so much progress. We have been truly blessed to have such a great God who has given Taylor his healing power. I wish that all the families and children with these horrible diseases were given the gift that we have been given to have our child with us. Everyday to us will be cherished as long as we can see our daughter overcome this battle and live a happy and healthy life.

Thanks to so many people for all their prayers and encouragement through this difficult year. I hope that 2005 is a better year for us and everyone. I want to wish everyone a very Merry Christmas and a Happy New Year and please continue to write to us and pray for a miracle that Taylor will be healed and also to all children with these life threaten diseases.

God Bless,
Angie



MORE GREAT NEWS!!! Taylor's lumbar puncture was negative of cancer cells!!

Also, Angi was able to see the scans today of the MRI. The tumor has shrunk and is about 1/2 the size compared to January 2004.

Taylor's Blood Test Results were
WBC 2.1
Hemo 11.8
Plate 281
ANC 1200

You can look at the chart above to see the Normal Blood Count range.

Taylor weighed 13.2 kg which is about what she has been weighing. The nutritionist, Amy, is having Taylor use a pre-made drink in order to obtain additional nutrition and calories.

Taylor did great with all her therapies today. She even used her walker and walked around the exercise table. The occupational therapist, Dorian, noted how well Taylor is doing with her trunk control. She also noted Taylor's eye-hand coordination is much better. Dorian wants to begin weaning Taylor off the leg braces in order to strengthen her ankles. Taylor also needs to do exerices in order to stregthen her thigh muscles. The speech therapist, Amy, worked with Taylor today and Taylor did well in speech.

Taylor had her hearing test today. Usually, Taylor would have to be sedated in order to be tested, but she slept through the entire procedure. Angi hopes to have some test results for me on Wednesday.

Taylor and Angi met with the doctor concerning Taylor's eyes. Taylor's vision has improved in her right eye, but the left eye is deviating more. Angi will have to alternate eye patches on Taylor to see if that will improve. Taylor will eventually have an angiogram on her eyes to check the blood flow. If the blood flow to the iris is good, Taylor will have surgery on the muscle that is causing her eye to pull in.

Everyone that met with Taylor is impressed with her progress. Taylor will need to return to St. Jude's at the end of January for another evaulation. Please pray the tumor continues to shrink.

-Dee



GREAT NEWS!!! Angi just called with a small, but fantastic, update on Taylor. Dr. Gajjar's nurse called Angi and stated Taylor's scans show the tumors are continuing to shrink and her spine looks good. There is also no new growth of any tumors in Taylor's head. Everyone at St. Jude's is amazed at how well Taylor is doing and remarks how well she looks.

Taylor is scheduled for the lumbar puncture, appointments with ear and eye doctors, therapy, and clinic on Tuesday. Angi will also get a chance to see Taylor's scan for herself. Please pray the good news will continue. I will update more tomorrow as I receive more news.

I want to mention KINfolk, a great computer lending program that is available. Please use the link provided below for more information

I also added a few more names to the list above. If you get the opportunity, please stop by their site to offer them prayers and encouragement.
-Dee


Hello Everyone - I just received this update from Angi


Dear Dee,

I want to say Happy Thanksgiving to everyone even though it is a few days late. We are so thankful that we were able to share our Thanksgiving with Taylor and my family in Beckley. We had dinner at my Aunt Dreama's house with my grandfather, my cousins Julie and Shane and my Aunt Edie and Uncle Wayne. Taylor enjoyed the dinner and loved all the attention.

Here is the news of Taylor since my last update. The week of November 15-19 was a good week for Taylor. She ate well and we did our own therapy at home since she was unable to attend that week. As you remember my Mom was there that week. Taylor finally was cleared of the "poop" problem. She finished all her medicine that week. We were glad to get that news so she can return to therapy. Taylor is getting so much stronger. She can move pretty quick by crawling on her tummy or rolling. She is developing that "no fear" about getting off the furniture so we have to watch her like a hawk. She has starting setting at the top of the stairs and holding my hands and scooting on her butt go get down stairs. It is amazing how much she has improved since August when we came home. She wants to walk all the time. She can pull herself up to a standing position when she hold our hands.

She is setting up much better because she is developing more upper trunk strength.

Because she is more active she is getting little bruises like she use to when she was well.

I have some lab results that were done on November 11 that I did not have the last time. WBC 2.1, hemoglobin 11, platelets 222, ANC 1197. I know some of the values are up but I think a few went down from the last time.

We have been home several weekends to spend time with Mimi and Granddad.

The week that I was on 3-11 Taylor stayed with her daddy two nights. The house felt so empty and quite without her. It was like when I was traveling back and forth from Memphis except I was the only one at home. It was nice to have Mom there that week.

This week was going good and Taylor started with the "poop" problem again. I called the doctor and told her I thought it was back and sure enough it is. She is being treated with a different medicine and I hope that it helps. She did go to therapy on Wednesday and did very good. We will not have therapy next week because we are leaving this morning for Memphis. This week has been very stressful and knowing that we are returning to Memphis has made it even more stressful. Mom and I are planning to travel half way then travel the rest of the way on Sunday. This will give us a break and make it easier on Taylor too.

Taylor's tests are on Monday and Tuesday. The MRI is on Monday and the hearing and lumbar puncture test is Tuesday. Please pray for us that we get excellent results. This would be an awesome early Christmas present.

This evening we had Christmas pictures made of Taylor. She looked so beautiful! I use to have picture made every six month but this is the first since Christmas last year. I can't believe that in January will be a year since this happened to Taylor. We have been so blessed that God is taking care of her. She is so tough and such a trooper.

Thanks to everyone who continues to send Taylor cards and gifts. She enjoys them so much. I want to say "Hello" to all our friends from St. Jude and I hope to see them this week when we arrive. I always want to thank each and every person who continues to write and keep up with the website. I know that I'm not the best about writing to everyone but I think of you all and we always pray for everyone. PLEASE SAY LOTS OF PRAYERS FOR US THAT WE RECEIVE GREAT NEWS ON MONDAY AND TUESDAY. Take care and God bless everyone.
Angie




Please don't forget to sign the guestbook so Angi will know who is checking in on little Taylor.

Thank you and God Bless
-Dee

AUDREY'S UMBRELLA

Currently seeking volunteers to participate:

Audrey's Umbrella is a charitable mail program, designed to support people living with a brain tumor, by sending encouraging and cheerful mail. They are currently seeking volunteers to help in their quest. Their website is not yet up and running but will be soon through the Brain Trust site. They will have Featured Friends each month, to which the cards and letters will be mailed. For the month of December, the following people are being featured:

Audrey's Umbrella December Featured Friends

Melissa (12) likes movies, crafts & collects pigs

Ray-Anne (8) likes pink and purple, dogs, and collects porcelain dolls

Taylor Marie (3) likes Winnie-the-Pooh and Tigger & eye-hand coordination toys

Catie (2) likes story books, toddler toys & animals


cards may be sent c/o
Audrey's Umbrella
P.O. Box 232
Rye, NY 10580

If you would like to help with this worthy cause, you can email me and I will pass it along, or you can email Bonnie direct at audreysumbrella@braintrust.org .

Monday, November 15, 2004 9:41 PM CST

Here is the latest from Angi -

Dear Dee,

Thanks for letting people know about our picture in the People magazine. Taylor had a good week and we have been doing our therapy at home since she hasn't been able to attend therapy this past week. Her kidney and bladder test she had on Thursday Nov. 11 was fine also. I'm glad that it isn't anything else for me to worry about. We went home again this past weekend so we could visit with my cousin and her new baby who was born in July. She is really cute and her name is Olivia. She is almost 4 months old. It was hard for me to remember Taylor being that little. We also saw my Aunt Edie who had open heart surgery on November 5. She seems to be doing pretty good but is still very sore.

I'm working 3-11 this week and keeping Taylor. She still isn't able to go to therapy this week because the "poop" problem is no better. They need another specimen to check it and if it still isn't clear she will have to have more medicine and miss more therapy. This is so frustrating. Mimi is here with us to visit this week.

Taylor has been eating better this past week and weekend. She weighed 29lbs and 15oz at the doctor's office on Thursday. She seems to be getting much stronger and she is almost crawling at times. She tries so hard to do everything that she use to do. I have never seen such determination in someone so little. We have really been blessed to have such an awesome child and such a trooper. She is so loving and doesn't know a stranger.

I would like for everyone to keep Tom, Jennifer, Ben and Eli in your prayers and to wish Ben a very Happy Birthday which was this past Sunday. He and Easton Wargo our friend from St. Jude were born the same day.

I always want to thank everyone for their cards, gifts and prayers to us. They mean so much to us. We also would like to thank everyone who writes to us on the website to let us know that they are thinking of us. I know I have gained strength and encouragement from the cards and from the people who have written on the website. Taylor and I are doing good and I know that I will come through this with flying colors and so will Taylor. She is my rock and I will never let her down. I live day by day and I cherish every moment with her. As always God Bless everyone and please continue to pray for us.
Angie


**************

Cameron Boyd's friend, babysitter, and admin for his site has passed away. Following is the update that is posted on Cam's site. Please stop by Cam's site and offer a prayer for Ivy's family.

** From Cam's Site **
Hello, just wanted to let everyone know that Ivy didn't survive the open heart surgery that was performed on her this past Monday. She was operated on for approximately 13 1/2 hours & developed some complication along the way. We will update everyone when arrangements for the service are completed. In the meantime if you would like to send a card to her family, the address is: 6230 188th St. SW. Lynnwood, WA 98037.


Ben Bowen, who also listed on Taylor's site did not receive the good news everyone was hoping and praying to get. Please visit his site and offer his family your prayers and support.

Thanks and God Bless,

-Dee

Monday, November 8, 2004 10:16 PM CST

November 11, 2004
** A COUPLE OF SPECIAL NOTES TO POST **

First of all, Angi and Taylor are in the November 15, 2004 People magazine. The picture was taken at St. Jude's for advertising for Target stores. The ad is located on the inside of the front cover. If you get a chance, check it out.

Also, Taylor saw the oncologist today and the doctor said everything looks good. Please keep up the prayers for Taylor

Second thing is - Cameron Boyd's friend, babysitter, and admin for his site has passed away. Following is the update that is posted on Cam's site. Please stop by Cam's site and offer a prayer for Ivy's family.

** From Cam's Site **
Hello, just wanted to let everyone know that Ivy didn't survive the open heart surgery that was performed on her this past Monday. She was operated on for approximately 13 1/2 hours & developed some complication along the way. We will update everyone when arrangements for the service are completed. In the meantime if you would like to send a card to her family, the address is: 6230 188th St. SW. Lynnwood, WA 98037.


Ben Bowen, who also listed on Taylor's site did not receive the good news everyone was hoping and praying to get. Please visit his site and offer his family your prayers and support.









A new update on little Taylor from Angi -


Dear Dee,

I finally sat down to let everyone know the latest on Taylor. She had all her therapy sessions the week of October 25-29. She did very well. She seems to be getting stronger. We saw the Oncologist on Thursday, October 28 and he said she was doing well. The "poop" problem seemed to be better and she is scheduled for a special kidney and bladder test on November 11. The pediatrician had us get a urine specimen to make sure the her UTI was better. She finished all her meds for the UTI and the bowel problem the end of that week. She has been eating good and just fair on other days. She has been sleeping more and it is because of the meds she was taking.

Saturday, October 30 was trick or treat for us. Taylor was dressed up as Barney. Mom and dad were here for a few days and Mom and I took Taylor out to trick or treat. She really enjoyed it and especially seeing all the different costumes. A few of them scared her but she always had a smile on her face and she said "Hi" to everyone. We got several pictures and I hope that we can get them on the site.

The week of November 1-5 was a pretty good week except that Taylor has the "poop" problem again and has to take medicine for it. She missed therapy on Wednesday and Friday that week. She keeps having all these problems that always interfere with her therapy. Overall she is in good spirits and continues to play and laugh and work really hard on getting around even if it is rolling on the floor and sometimes doing the "army" crawl.

We visited with Mom and dad this past weekend and we always enjoy that. Edie Mullins my aunt who visited us in Tennessee several times and helped us pack and move out of Target House had open heart surgery on Friday, November 5. She is doing pretty good and we hope to see her soon.

Taylor will be staying with John during the day this week while I work dayshift. John is on 3-11 shift. Taylor will miss therapy this week due to the "poop" problem.

Taylor's right eye is doing much better. We still have to patch the good eye and that is a battle. We have to bargain with her to get her to wear it any hours of the day. When we return to St. Jude at the end of the month she will not have the botox injection like they had planned. The eye doctor wants to wait and let the eye heal and do muscle surgery on the medial muscle that is still causing the problem. We will be returning to St. Jude on November 28.

I want to say "Hi" to everyone and to thank everyone who continues to write on the site and send Taylor mail. She enjoys opening cards. Thank you to every person who continues to pray for us and send words of encouragement. We are so lucky that God has been so good to us to help Taylor through this ordeal. I know that miracles happen everyday and I want us to be one of them.

I want to say that I always think of my friends and the staff at St. Jude and we are so lucky to have been with such great people. We miss them and we miss our friends that we met at Target House and hope that all are doing well.

As always God Bless everyone and continue to keep us in your prayers and all the families at St. Jude and the ones who are at home.

Angie




Thanks for continuing to check in on Taylor and God Bless.

-Dee

Monday, October 25, 2004 2:02 PM CDT

Here is the latest information from Angi -

Dear Dee,

Sorry I haven't written or called. Taylor was released from the hospital on Friday, October 15. She has more meds to take along with her regular meds. The barium swallow test showed that she has some reflux which could be the result of the radiation. They put her on Prevacid once a day. Overall she is doing pretty good. She wasn't able to have her therapies this past week due to the "poop" problem she was having. It is easy to transfer from one person to another if you don't do good hand washing or wear gloves. She has been in good spirits and continues to play at home and watch her DVD's and we do our own therapy at home.

On Thursday, October 21 I took her back to see the pediatrician. I thought that the "poop" problem was coming back and she wanted to check it again along with a urine specimen to see if this was clearing up before they did further tests. She returns back to the Oncologist for a recheck this Thursday, October 28. We aren't sure if she can return to therapy this week until the "poop" is OK. She has therapy appointments for three days this week. I will be working days and John will be on afternoon. If she is able to attend her therapies he will be with her.

Taylor and I went to Beckley this weekend to see Mimi and Granddad. They are doing pretty good and Dad is able to put more weight on the other side of his pelvis. They are planning to visit us this weekend.

As always I liked to thank each and every person who has sent us any cards, gifts, prayers and any words of encouragement. We are so thankful for everyone's support and we have enjoyed receiving the cards and anything that anyone has sent us. I would like to send a written personal thank you to each and every person but I have been giving my full attention to Taylor when we are home and she is the most important person to me and always will be!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I would like to say Hi to any of our St. Jude friends and let them know I think of them always and I'm sorry I haven't written on their sites but the computer is having problems in connecting. I can get email but I have not been able to connect on Taylor's site or any of the others Please pray for us and our families as we continue to battle this horrible disease. Take care and God Bless everyone.
Angie



Thanks for checking in and God Bless. Don't forget to sign the guestbook!

~Dee

Thursday, October 14, 2004 9:05 PM CDT

Here's the latest update with little Taylor -

Last week Taylor went to her therapies and she did so-so. She still isn't eating well.

This past Monday Taylor had just finished eating when she threw up. She became very lethargic and kept trying to go to sleep. She was taken to Ruby Memorial Hospital in Morgantown where she spend the next 12 hours in the emergency room. She was finally admitted to the hospital on Tuesday.

Taylor wasn't drinking much and became dehydrated. She has been receiving fluids. An ultrasound of her kidney and bladder was performed and everything is fine.

Taylor was diagnosed with a urinary tract infection. Her stool also contained an infection and she is being treated with medication and antibiotics. Taylor is fighting two infections and that seems to be the reason behind her excessive sleepiness.

She seemed fine this morning and she ate breakfast, but shortly after she threw that up as well.

Her swallowing was checked and seems fine. The doctor is thinking there could be an esophageal problem that can't been seen. She is to have a barium and swallow test tomorrow. If for some reason she can't have this done tomorrow, she will probably have it as an outpatient.

Taylor may be able to go home on Friday.

Please continue praying for little Taylor and her family.

Thank you and God Bless,
~Dee

Sunday, October 3, 2004 12:28 AM CDT

Little Taylor is back in West Virginia. She continued having appointments and consultations throughout last week. John and Angi were able to see Taylor's scans themselves on Thursday. Angi stated there is a dramatic difference in the density and size of the tumor. Please pray this tumor continues to disappear...and stays away!

Taylor has been having gagging reflexes at times when she is eating. The speech therapist noted the reason behind this may be the position Taylor is in while she's eating. Taylor was given a special chair to take home with her to help her sit up straight while she eats. Hopefully, this will take care of her gagging reflex.

On Friday Taylor saw the eye doctor. The doctor said Taylor's eye looks good. Taylor is scheduled to return to Memphis the last week of November to have a botox injection as well as another set of scans.

Taylor was taken off the Zantac, but she still remains on her antibiotic.

Taylor's bloodwork the latter part of the week was:
ANC 1900
Hemo 11
Platelets 212

Angi also stated they were able to get with Tom and Jennifer Bowen on Wednesday for dinner. I'm sure it was a bittersweet reunion. Ben is scheduled to finish his radiation treatments this week before heading back to West Virginia. Please visit Ben's site above to offer him and his family your prayers and encouragement.

Please continue lifting John, Angi, and little Taylor up and pray for Taylor's complete healing.

Don't forget to sign the guestbook. Taylor's family receives encouragement from your visits.

Thank you for checking in and God Bless
~Dee

Wednesday, September 29, 2004 12:39 AM CDT

Here is the latest information of little Taylor -

She had eye surgery on Monday. Taylor's eye is a little swollen and red, but she did well with the surgery. The doctor was able to move the eye out a little bit, but the muscle that is inside of the eye is so tight, the doctor could move it so far and that was it. Her eye is still not midline. There is talk that Taylor will have to go back for another botox injection at a later date.

She was cranky and slept for awhile on Monday. She was sick at her stomach and threw up. It is suspected this is all from the anesthesia from the eye surgery.

Taylor also had her scan on Tuesday. Angi and John happened to run into the doctor in the hall and asked about the results. The doctor said THE TUMOR IS SHRINKING! He will go over everything more in detail with John and Angi on Thursday at Taylor's clinic appointment.

Taylor had bloodwork on Monday -
Hemo 11
ANC 1900
Plate 212
WBC 2.6

Taylor weighed 14.1 kg - down to 30 pounds from 32 when she left home on Saturday.

Taylor had a speech consultation on Tuesday. The therapist wanted to evaluate Taylor to determine her abilities for her age group. Taylor did everything appropriately for her age. She will continue to have appointments with physical, occupational, and therapist this week. Some appointments will be therapies and some will be consultations. Taylor does seem to have regressed a little bit on her speech, as well as physically since she has not been able to receive her therapies in West Virginia due to insurance reasons. She is expected to start her therapies when she returns to Fairmont, so hopefully she will be back up to speed.

Thanks for checking in and God Bless.

Please don't forget to sign the guestbook. Angi and John still need your prayers and encouragement.

~Dee

Saturday, September 25, 2004 9:30 AM CDT

John, Angi, and little Taylor will be leaving for Memphis sometime today around noon. They are planning to stop on the way to St. Jude's and spend the night and then drive on in on Sunday. They will staying at Grizzly House in Memphis.

Taylor has been doing pretty well. Her appetite is still so-so, but she is maintaining her weight - around 30 lbs. Taylor began PT on Friday (yesterday). She is also going to have Speech and OT. It has taken Angi this long to get things approved from the insurance companies. Let's just hope the insurance companies haven't caused Taylor to loose any of her momentum. Taylor did well in PT. She used her walker and threw ball with her daddy. She also was getting up into a standing position from a sitting position.

Taylor is scheduled to have bloodwork and eye surgery on Monday. She is also expected to have a scan of her head and spine as well as a lumbar puncture on Tuesday. She has various appointments for the rest of the week, including PT, OT, Speech, Clinic, Nutrition and Neurology, as well a few consultations. John, Angi, and Taylor are due home on Friday.

Please pray that Taylor's scans are clear and her tumor is shrinking and going away for good. John and Angi are worried because Taylor has thrown up a few times lately and then has taken a long nap - sometimes up to 3 hours.

Also, little Taylor is featured for the month of September on the Tumbleweed Foundation. You can find the link to Tumbleweed listed below.

Please don't forget to sign Taylor's guestbook and continue praying for John, Angi, and Taylor.

Thanks for checking in and God Bless,
~Dee

Sunday, September 19, 2004 11:20 AM CDT

Dear Dee,

I wanted to write to give a short update on Taylor. Taylor has had a good week. Her daddy kept her this week while I worked. She has been eating so but I think she still weighs the same. We just received the ok for Taylor to start rehab. She will probably start sometime this week. Taylor has been taking extra long naps during the day and this is due hopefully to the post radiation. It is scary at times because she may sleep up to three hours. We always think that it could be something else. We still continue to do as much rehab with Taylor and she is always in motion. She plays with all her toys and continues to watch her videos. We have purchased some new Barney DVD's and now she has been watching Pocahontas. We also have the new Lion King Simba's Pride and we have seen it multiple times. Mom has been visiting with us this week. Dad insisted that Mom come and help with Taylor and to help me get things put away since our return from ST. Jude. I know Taylor enjoys this. Dad is doing much better and hopes to come home soon. He can stand with the use of a walker on the right leg but at this time can't bear any weight on the left leg therefore he will have to be mobile in a wheelchair. John returned back to work this weekend and he will be working this week while I will be home with Taylor. Taylor and I will be going home for a few days to visit dad and next weekend we will leave for St. Jude. I know that I will be praying that we get a good report.

As always I want to thank each and every person for their prayers, cards and gifts to Taylor, John and I. We have been very lucky to have this time with Taylor and I hope we have many more years to spend with her. We miss our St. Jude friends and families. I want all of my families at St. Jude to know that I think of you all often and sorry I haven't been very social with writing. This is still a very trying time for us and hopefully we can overcome our fears and problems.

Take care and I will try to update before we leave for St. Jude.
Angie




Little Taylor is featured for the month of September on the Tumbleweed Foundation. You can find the link to Tumbleweed listed below.

Please don't forget to sign Taylor's guestbook.

Thanks for checking in and God Bless,
Dee

Sunday, September 12, 2004 10:56 AM CDT

Just received this update from Angi


Dear Dee,

Today is September 11 and I know I have been slacking on the job but a lot of things have been going on. Taylor went back to have blood work on Friday, September 3. Her WBC 2.4, hemoglobin 12.8, platelets 67, ANC 952. They thought she would need platelets but they had increased from 56 to 67. She appeared much better after the blood on September 1. We had a good weekend and Mom came up from Beckley on Saturday the 4th. Dad is doing much better. We didn't do much for the holiday. We are still fighting with the insurance about getting her therapies started and I hope to find out this week. I have been talking with people since I arrived back in Fairmont. Taylor is doing good and has been playing with her toys and watching movies. We are working with Taylor doing therapy too. She has lost a few pounds. She now weighs 30lbs instead of 32lbs. Her appetite has decreased and back to her picky appetite.

I finally got the house back in order after we got home. It was amazing how much stuff we had and all the toys that we had to find homes for.

Things are not well at home with John and I and he decided to stay at his mom's house. I know that Taylor doesn't understand all of this but we have been through so much that it has effected our life together. I hope that we can somehow get this patched up.

Taylor had bloodwork again on Thursday, September 9 and her WBC 3.5, hemoglobin 12.5, platelets 93, ANC 2600. Dr. Kellar the Oncologist said unless she had any problems that they would not need to see her again. We leave in two weeks for Memphis. We are so scared!!!!!!!!!!!

The last few days have been calm and Mom is still here. She will be leaving tomorrow and Taylor will be having the party that John's family had planned. I hope she has a good time.

Again I would like to thank everyone for their time to write us and send any kind of gift, card and all the prayers. I hope that we can work everything out and be a family again for Taylor's benefit. PLEASE PRAY FOR US AND ALWAYS CONTINUE TO PRAY FOR TAYLOR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Take care and I will write soon.
Angie




Little Taylor is featured for the month of September on the Tumbleweed Foundation. You can find the link to Tumbleweed listed below.

Please don't forget to sign Taylor's guestbook.

Thanks for checking in and God Bless,
Dee

Thursday, September 2, 2004 9:59 AM CDT

I received this update from Angi today -



Dear Dee,

I have finally sat down to write some news on Taylor. We arrived in Beckley on Thursday morning August 26 at 5:00am. If it hadn't been for the help of my Aunt Edie and Uncle Wayne helping us I don't know what we would have done. They both helped me with packing supplies in the apartment and Wayne helped John pack the van the day he arrived in Memphis. Edie rode with me on the way home to help with Taylor. They both had a great time and Taylor did very good on the trip. I have the most wonderful family members and especially the greatest parents in the world who have been so giving, caring and sacrificing to help us these last 7 months!!!!!!!!!! I know we couldn't have done it without their help!!!!!!!!!!!!!!!!!! My sister even took the time to make two trips to see us and my friends from California E'lise and Spence. My Aunt Dreama and my Grandfather made the long trip with my parents for Taylor's birthday party!!!!!!!!!!!!!!!!!!!!!!! Iris Ferdandez who was my mother's boss was there too!!!!!!!!!! I'm so glad that she was able to have such a great birthday party with my family and we loved having our Target family members and the staff who came from the hospital. It was an awesome party!!!!!!!!!!!!

While Taylor and I were in Beckley we visited my dad in Huntington and he and Mom were so happy to see Taylor. She missed them and when we arrived at the house Thursday morning she was crying for them because she knew that they should have been in the house. Dad has had some rough days but is doing much better and will be leaving Thursday, September 2 for HealthSouth in Princeton, WV for rehab. It will be a long process for him due to the bad fractures he received.

Taylor and I arrived in Fairmont on Sunday, August 29 and she was very happy to be home. I think she remembered most of everything even her room. Some of John's family came over to visit right after we arrived home.

Taylor has been playing with many of her toys and she has been rather tired and somewhat pale. We saw the pediatrician Tuesday, August 30 and they did some bloodwork. WBC 1.1, hemoglobin 6.8' platelets 68 ANC 572. The doctor talked to the Oncologist and they felt she needed blood so Wednesday Sept. 1 we went to Ruby Hospital and she received blood. Her bloodwork before the transfusion had dropped again and the WBC 1.4, hemoglobin 6.3, platelets 56 and ANC 952. She felt a little better and her color improved some. We have to return on Friday to repeat the labs because she may need platelets. She has been playing and still watching her videos. My Uncle Wayne and Aunt Edie were here for a few days to visit us. They are now at Edie's sister's house in Kingwood, WV. It really feels funny being able to stay home for a while. I hope that Taylor continues to improve everyday. I know that God and Our Lord Jesus will help her and give us the miracle we have all been praying for!!!!!!!!! I miss all my friends at Target House and I want to say HI to all of those there and we pray for all of you!!!!!!!!!!!!!

I will return to work next week and I really hate to. We have not started any therapies yet and hope to soon. We will be returning back to Memphis the last week of September for her checkup. She will also have the eye surgery too. We pray to receive good reports!!!!!!!!

Again thank you to each person for all the prayers, cards and any form of gifts they have sent to us during this trying time in our life. We have to be so thankful that we still have our precious daughter!!!!!!!!!!!!!!!!!! As always God Bless everyone and take care.

Angie







Also, don't forget to check out the Tumbleweed Foundation (link listed below) where Taylor is featured for September!

Please sign the guestbook. John and Angi will not know who is checking in on them unless you let them know through the guestbook.

Thank you for checking in and God Bless,
~Dee

Wednesday, August 25, 2004 5:21 PM EST

A quick update - John left Memphis last night around 11 PM and drove straight through with the van. Angi and Taylor left Memphis today at 2:30 PM and are on their way to West Virginia. I could hear Taylor in the car asking for a cookie!

Taylor's Grandad Charlie is still in the hospital in Huntington and there are no changes to report.

Taylor had PT and OT on Monday and Tuesday and she did well with both.

Her blood work was as follows:
WBC 1.1
Hemo 8.1
Platelets 62
ANC 600

Thank you for checking in and for all the prayers. Please continue praying for a safe trip and complete healing for little Taylor and Charlie.

God Bless
-Dee







** From the Guestbook **



Dear Family and Friends,

"Auntie" Edie is back with Taylor again and gathering lots of material for Chapter 2 (The Birthday Party) and Chapter 3 (Leaving St. Jude). Keep watching for my new story updates, but give me plenty of time to return to WV, unpack, do laundry, etc.

For now, here is what's happening. With Grandad Charlie's accident, all plans to leave TN and return to WV have changed. John left Saturday with his car packed full to go home to Fairmont, pick up Pappy, bring his brother's truck back, rent a U-Haul, and take everything else home. Angie and Taylor were going to fly home. Change of plans! Now John is trying to rent a van or get our truck in Beckley. Nothing is definite yet, but I'm certain Angie and Taylor will be back in West Virginia soon.

Uncle Wayne and I are helping Angie pack and clean the apartment and we will not leave her here by herself.

Tuesday, Wednesday, or Thursday we will all be leaving to go to Beckley, West Virginia.

Please continue to pray for Taylor and her grandad's health, safe traveling, and strength for the family.
Edie
Beckley, WV usa - Sunday, August 22, 2004 3:50 PM CDT

** ------------------------**





** A quick update ** - Little Taylor's grandpa, Charlie, is resting well at St. Mary's Hospital in Huntington, WV., and the tests now show no bleeding around the spleen, and the bruised kidney is healing. His pelvis is fractured on both sides, and a specialist will be seeing him this afternoon. Palma (little Taylor's "Mimi") was driven to the hospital by a friend.......hopefully they will receive good news later today.





Angi could not do Taylor's update tonight. Angi's dad (Charlie) was in a bad car accident today in West Virginia. He has a fractured pelvis, bruised kidney and a possible bleeding around his spleen. He was in the process of being transferred to Huntington for treatment. I will update with any information that I receive on his condition, in the mean time, please pray for his recovery.

This also changes John and Angi's plans for going home to Fairmont. Charlie and Palma had planned on going to Memphis in order to help John, Angi, and Taylor move, but right now plans are in the process of being re-worked.

Taylor has had a good week. She did well with all her treatments. Her speech went very well and her physical and occupational was little better.

Her steriod dosage was lowered to 1/2 mg down from 1 mg and as of today, she has completed all her dosages.

Taylor also finished her last round of radiation today. She received a journal and t-shirt. The journal is for all the nurses and doctors to write something to Taylor and also for her to put pictures in.

Taylor has been very active all week. She has been talking and playing...and eating! She is still suffering from bouts of constipation. She is still eating lots of cheese and is also on a Gerber baby cereal kick...that has lots of iron. A serving size is 1/4 cup and Taylor has been eating 2 to 3 bowls at one setting.

Taylor is weighing 14.2 kg.

Her Bloodwork this week was:
WBC 1.5
Hemo 10.1
Plate 62
ANC 1100

Taylor is scheduled to return to St. Judes at the end of September in order to have surgery on the one eye muscle. The doctor was concerned that the eye has not improved. Taylor will also undergo another lumbar puncture and MRI while in Memphis to determine what the tumor is doing. As of right now, it is shrinking. Thank you, God.

On Monday, John and Angi took Taylor to the Wolf Chase Mall where they went to Build A Bear. Little Taylor chose a monkey and outfitted in a white shirt, pink vest, blue jean skirt, socks, and skeechers. They named the monkey Minnie, the monkey from Memphis and Taylor insisted she (Minnie) attend radiation with her today, along with a few other furry friends.

Other than a radiation burn on the back of Taylor's neck, she seems to be doing well. Please continue praying for her complete healing. Also, please add a prayer for Angi's mom, Palma.

Angi also wanted me to thank all Taylor's family and friends who attended or sent Taylor's gifts and cards for her birthday. Angi will still update us on Taylor's birthday party when she is able to sit down and write about it.

Thank you for checking in and God Bless

- Dee

Also, please take note of the address change below. John, Angi, and Taylor will leaving to go back to West Virginia sometime this week.

Saturday, August 14, 2004 3:13 PM CDT

Sunday August 15, 2004 10:10PM EST

A small update for this weekend -

On Saturday Mimi, Grandad, Papaw, Dreama, and Iris visited with Taylor. John and Angi was able to go out to get the last of the party supplies for Taylor's birthday today.

Sunday (Taylor's Birthday!)- Taylor had her party in the Barney theme. She had between 40 to 50 guests (including children and adults). She had guests from Target house attending as well as nurses from the radiology department and the recovery area. The recovery area nurses had Taylor's Barney cake made for her. The menu included hamburgers, hotdogs, chips, and side dishes. They were also able to decorate the party room somewhat for the party. John made the centerpieces for the tables out of helium balloons and tissue paper.

Right now Taylor is a little cranky. She woke Angi up at 6am and they both have had a long day. Angi was yawning quite a bit while I was on the phone with her.

Angi will update a little more in detail later this week.

Thanks for checking in and God Bless -
Dee





Happy Birthday to you...cha cha cha
Happy Birthday to you...cha cha cha
Happy Birthday dear Taylor
Happy Birthday to you...CHA CHA CHA!!!


Don't forget to drop a line in the guestbook and wish little Taylor a very happy 3rd birthday!!! Her birthday is Sunday, August 15.









Angi updated Taylor's web site for us -


Dear Dee,

(8/7) This was a quiet morning for Taylor. She ate a big breakfast and was not as talkative. She watched a lot of her videos. Sally arrived at 3pm today. Taylor was very excited to see her. Taylor and Sally played together most of the afternoon. Sally brought many birthday gifts from friends of Carole's from church. We had to hide them because Taylor would want to open them before her birthday. We all had a big dinner and watched a movie.

(8/8) Sunday morning we cooked a big breakfast and Taylor ate very good. In the early afternoon we went to Peabody Plaza where there is 22 theatres, 17 restaurants and several stores for shopping. We walked around to see everything and then went to eat lunch at Jillian's. Taylor ate like a "little pig!" She had half of a personal pizza, fries, and part of my fettuccini alfredo dinner and a couple of bites of John's burger. We wondered where she was putting all of this. When we finished we walked over to the famous Beale St. It is most famous for the blues music and food served at many of the bar and grills. It was really hot and humid that day so we didn't spend a lot of time there, Taylor was very hot and complaining about it so we left. We all relaxed that night and Taylor fell asleep early.

(8/9) Monday morning Taylor had an early radiation treatment. After she finished we returned home to feed her before we had to go back. John returned to the hospital after eating to give platelets again. Sally and I took Taylor back for her PT. She was also scheduled a radiation clinic appointment with Dr. Merchant. Dr. Merchant thought she was doing very well. After finishing at the hospital John and I went out around 4pm for a movie and to get something to eat. Sally told us that we needed a night on the town and she would watch Taylor. We enjoyed ourselves and Taylor and Sally had a great time together. When we arrived home Taylor was almost asleep so we got her ready for bed. Taylor had a good day and she played and talked all day. She always amazes us how well she does from day to day.

(8/10) Tuesday morning Taylor had assessment and triage for bloodwork, weight, and vital signs. Her WBC 2.1, hemoglobin 10.7, platelets 64, ANC 1500. Taylor weighed 14.1kgs compared to 13.3 kgs last week. I forgot to include Taylor's height last week, it is now 90.5 cm. She was 89 cm tall last month. It is hard to believe that she is growing so good. After triage we went to radiation for her treatment and she did well. Sally was with us when we went to our clinic for a weekly checkup. Taylor was able to go to her OT session but we missed speech and PT. In clinic the nutritionist saw Taylor to see how she was doing. The nutritionist usually see's her once a month. They knew she has been taking steroids and wanted to make sure she wasn't having any problems with them. The steriods can effect her sugar and they watch changes in her bloodwork. In clinic today we met with Dr. Gajjar. We talked about the next thing we would be doing after radiation. We were shocked when he told us that she would not receive chemo, and that we had to wait and see if the tumor was responding to the radiation. We felt that they were trying to tell us that there was nothing else they could do because of this horrible disease that they have no cure for. We both were very upset that day and I know Sally was even shocked. She left that afternoon. We really enjoyed seeing her and I know Taylor did too. The study that Taylor was placed on is not for children with ATRT, but they are using the same drugs on children with medulloblastoma. So Dr. Gajjar said that we would leave here and return home and come back in 4-6 weeks for a follow up scan. If at some point during our checkups the MRI shows more tumor or spread they would start chemo again. If this would happen it wouldn't be good. We all have to pray that the tumor dies completely and doesn't come back. During the next several weeks we will be busy getting things prepared to leave and come home. We are not sure how she will receive her therapies, either at home or in the hospital. Taylor will finish her last radiation treatment August 20. In clinic they decreased her steroid another milligram. Now she is taking 1 mg a day instead of 2 mg. They will have her off the steroids before we come home. Her appetite will probably change without the steroids. Taylor has been having some problems with constipation again and I had to give her an enema to help. She finally got some results and I hope she feels better. We had a quiet evening and I know Taylor could sense that we were very upset with what we were told in clinic today. I am happy that we get to come home but we will be so worried what is happening with the tumor without any form of treatment.

(8/11) Wednesday Taylor had an early radiation treatment and she did well. We returned home to eat before returning back for her speech session. Taylor played while at home and I did some laundry. Taylor's speech session went poorly today. She didn't want to talk or cooperate at all. We did try many things but nothing worked. I think she was tired since she did not have a nap before we went back. We didn't do much that afternoon or evening. Taylor played with her dolls and her stickers and watched her videos.

(8/12) Thursday morning Taylor had and eye clinic appointment. Dr. Hohen wanted to check Taylor's eyes and vision since we have been in radiation. She felt that she had only a small improvement with the right eye so we discussed about having muscle surgery real soon. Both Dr. Gajjar and Dr. Hohen said that there should be more improvement after 6 months post surgery. It is possible that the nerves may never recover completely for the eye or her face to be normal again. Taylor may be having eye surgery in the next few months. We wish that the eye and face would recover on its own but only time and God will tell. Today Taylor was having an MRI along with her radiation treatment. They did the MRI first and she remained sedated to follow with her treatment. She did very well. We went home after she was done in the recovery area and we ate. She was so good and very talkative and playing with her toys. She ate well and later took a nap. We missed OT today. We did get good news about the MRI that the tumor was getting smaller and looks like it is responding to the radiation! What a relief and a this was some good news we needed to hear. Later that evening we went shopping for party supplies and a few gifts for Taylor from us. Mom, dad, Dreama and papaw arrived tonight and came over to visit with us. Taylor was so excited to see all of them.

(8/13) Friday morning we had an early radiation treatment and she did well. We had to see the line nurse before we went home. The nurse in radiation could not get a blood return from the line and sometimes they move or get a clot. The line nurse had to make sure it was working properly. We returned home to eat before we had therapies in the afternoon. Taylor did pretty good at each therapy and mom,dad, Dreama and Papaw came over to the hospital to visit. We came home after therapies and mom and dad, Dreama and papaw stayed with Taylor while we went to the hospital to see Ben Bowen. I hope that everyone knows that he had surgery on Thursday. Please pray for him and his family! The news on Thursday was not very good but was a little better on Friday. Ben was playing in his bed with us and talking. He looked good to us. Iris Fernadez who use to work with mom at the VA hospital arrived this afternoon to attend the party on Sunday. We all went out to eat while John stayed home. He wasn't feeling very well. It really was hard on him seeing Ben. When we arrived home we got Taylor ready for bed.

As always I thank each and every person for every pray, card, or gift to Taylor and John and I. We have been very blessed with so many things and that Taylor has done well with everything. Please continue to pray for all our St. Jude families and continue to keep up with the websites on their progress and write in our guestbooks. We all need to know that people are thinking and praying for us. God Bless all and take care.

Angie






A special request - Amanda is a single mother struggling through her son's illness at St. Jude's. She and her son need our prayers and encouragement.

Jonathan Haynes

Friday, August 6, 2004 9:06 PM CDT

This statement was taken directly from "Big Ben's" site -

(8/12) 3:30 P.M. Eastern Time. We just received a call from Danny, one of Tom’s friends visiting in the hospital with them with very bad news. The “bleeding” the doctors thought they saw on the MRI’s has actually been tumor growth. When the surgical team got to the tumor they realized that it had actually been growing very rapidly and that the chemo therapy had not been affective in slowing or stopping the growth of the cancer. The tumor had increased in size approximately 20ince last Friday and has grown into the brain wall and could not be completely removed. The surgeon did not say how much was removed or how much remains but it appears that the cancer was not affected much by the treatment they have been going through. The surgeon did not provide any time line on what would happen next.

Please pray for Tom, Jennifer, Ben, Eli and the family there because this is very difficult news to handle. Believing is hard, especially now, so we need to lift up our firends in prayer and encouragement. Let them see our care on the guest book.

For Tom,

Mike


*************************


A special request - Amanda is a single mother struggling through her son's illness at St. Jude's. She and her son need our prayers and encouragement.

Jonathan Haynes







Monday morning, August 9, 2004

Heaven is Rejoicing

Hanna passed away earlier this morning - she was peaceful and pain free.

Please visit her site and offer her family your prayers.

Also, Ben is experiencing a lot of difficulties. He is to undergo surgery this week concerning the bleed in his brain. Please offer Ben and his family your prayers. You can find Ben's link listed above.











Here is the latest from Angi





Dear Dee,

Today is Friday, August 6 and we are home trying to clean and get Taylor to eat and take a nap. I want to let everyone know that Taylor's lab work on Monday, August 2 was pretty good. WBC 2.8, hemoglobin 11.3, platelets 98, ANC 2400, and she weighed 13.3 kgs. Her platelets were low and I hope that they do not drop below 50 or she will need platelets. The camp for the kids started on Monday and did not have a very good turn out. The people responsible to do the planetarium did not show and the moon bounce was the only activity here. When the moon bounce was here at the last camp in June Taylor couldn't wait to get in it. This time she was terrified of it. Her actions and behaviors have really changed since she has been sick. We saw the Bowen's a brief time that day and they were heading over to Hanna's house. They said she isn't doing well. We are so heart broken for her and her family. That evening Taylor was very tired and we rested that night.

Tuesday, August 3 we had our regular clinic visit. Taylor was very "chipper" this morning and they were all glad to see that see is doing so well. They reduced her steroid another milligram and she is now taking 2 mg a day instead of 3 mg. They said she looked good and would see us next week unless we had some problems. After clinic she had her treatment and did well. After she was finished we came home and she ate the entire time. We thought she would take a nap but she fooled us. That afternoon Taylor had speech and PT. She wasn't very cooperative and cried on and off. After we arrived home we all went down for the camp activities. Today we made tie dyed shirts. Taylor started helping but was so tired and hot due to the high temperature and humidity John had to finish the shirt. Target provided dinner for all the families. It was catered by Corky's Grill. They had pork barbecues, barbecue ribs and chicken, cole slaw, baked beans, salad, spaghetti and brownies for dessert. Taylor ate some spaghetti and we ate the other things. After dinner was over we went back to the room and got Taylor ready for bed. Later she ate some cereal and finally went to sleep.

Wednesday, August 4 Taylor had OT and speech. The OT therapist forgot about our appointment so we had an extended speech session. Sara the speech therapist included some activities that deals with the OT part of therapy and Taylor did so good this morning. She was talking and playing like crazy. We were really pleased with her and Sara was really impressed with her. After therapy Taylor had her treatment and did good as always. She is always so tired and quite after it. She did eat when we got home and took a short nap. I took a nap for a little while as John entertained Taylor, when I awoke from my nap John left to return to the hospital. He was going to give platelets. They are always in the need of blood and platelets. It cost them a lot of money to get blood and platelets. While John was gone Taylor continued to eat. We did not attend the activities at camp. Taylor was very tired and quite that evening. We received a memo from Jennifer Kimble the special event and coordinator for the activities at Target House that all children who have a birthday in August is given the opportunity to choose up to $100 worth of merchandise from the Learning Curve catalog. We have the catalog and are looking to decide what she may like. Taylor was really tired and after her bath and medications she was asleep very early. We watched a movie and both fell asleep before it finished.

Thursday, August 5 Taylor had OT this morning and she played but not like she usually plays with Dorian. Every morning she is so hungry and gets so upset when we have to tell her after her picture has been taken then she can eat. It is so terrible that when she is under treatment we are shoving any form of food at her to help her gain strength and weight then we have to tell her no every morning. Taylor had treatment after OT and did well. We were home early and Taylor ate briefly then took a 2 hour nap. I did laundry and John went on the Internet to look at different things. After her nap we left for Super Target Store to look around. We did not attend camp. This Target is like going to a super Walmart. It has a grocery, pharmacy and has a bigger selection of things. We did pick up a few gifts for Taylor's birthday. On our way home we got dinner to go and came home to pig out. Taylor was so tired that she ate a small amount of dinner. We got her ready for bed and she was asleep by 9pm.

Today August 6 Taylor had her treatment early this morning. We were home by 10:30am. This is a first for a while. Taylor ate real good and of course did not take a nap. She just took it easy and watched TV. Around 1:00pm she said "night night" and we laid her down for a nap and we figured we wouldn't make it to our therapies. Taylor had OT and PT. Her speech session was canceled because Sara had to go to the doctor. When we arrived home we went to the camp activities but this was back pack day and only the children who would be attending school was able to get a back pack. They had pizza for dinner but we had to wait so long that Taylor was getting tired and hungry. We came back to the room and she ate and took a short nap. Today the weather was great! No humidity and the temperature was in the low 80's. Tonight we will play with Taylor doing stickers and with her puzzles and blocks. We are so glad the weekend is finally here. My sister Sally will be arriving here tomorrow evening and staying for several days. I'm so glad she gets to see Taylor again.

We have had some good and bad news about several of the families here this week. Please check on Easton, Ben, Louie, Hanna, Aaron to see how they are doing and don't forget to write in their guestbooks. We all love to get new messages from so many people. I always want to thank each and every person for their prayers, gifts, and all the cards to Taylor. We miss our home and other family and friends but we hope to make it home sometime soon. We hope to have a good turn out for Taylor's birthday with all her new Target friends and families next weekend. Please continue to pray for us and especially Taylor so that she is cured.

God Bless you all and take care.

Angie






I spoke to Angi concerning little Taylor's fast approaching birthday...Angi stated Taylor is in need of Fall clothing. Taylor is now weighing 30lbs, but with upcoming chemo, Taylor could lose weight easily. There is a Super Target, Walmart, and a mall at Wolf Chase (very near to Angi and John) that has a Dilliards and a JCPenny. My suggestion is in lieu of clothing, gift cards should sent so Angi won't have to spend her precious time exchanging items that are too small.

Also, unfortunately there has been additional links listed above. These children and their families need our prayers and encouragement. Hanna is having a very difficult time. Only God knows what is in store for her, but no one is giving up on His graces and He can perform miracles.

Ben Bowen is also experiencing some disturbing symptoms this week. It seems he has had another brain bleed.

Louie received some encouraging news this week.

Aaron is going through "mail withdrawal". His birthday is over and he can't understand why his mail has stopped. Please visit his site and send him some "snail mail" along with an encouraging message.

Please, if you have a moment, check the links above and offer your prayers.

Thanks for checking in and God Bless
-Dee

Monday, August 2, 2004 5:06 PM CDT

Angi updated on little Taylor for us -

Dear Dee,

I finally sat down to update the site for everyone. We left off on Tuesday, July 27. Taylor had PT that morning and wasn't in the mood to participate. She wanted to cling to daddy as always. We were seen in our clinic for a once a week checkup. Taylor was very sleepy and not talking as much that day. The clinic said this is not like Taylor. We have been concerned that she might be feeling more effects of the radiation and the sedation everyday. Her appetite has been great. The steroids has really made a difference. Dr. Gajjar reduced the dose of the steroids again and she is taking 3 mg instead of 4 mg. Overall, they said she was doing good and would see her next week. She wouldn't participate in her speech session this morning. I really hate that she doesn't feel good, but the therapists are very understanding. They try to get her to do something's but it doesn't always work out. Taylor had her treatment and did well. After coming home she was very quite and slept most of the day and evening. She wasn't interested in playing. We wanted to know where our child wondered off to.

Wednesday, July 28 we started our morning in the radiology clinic to see Dr. Merchant. He wanted to know how things were going and how Taylor was doing. We told him about the change in her talking and playing. We were not sure why she was so quite and very sleepy. He wasn't real sure either so he wants Taylor to have another MRI to see if the tumor is changing but he did say that she may be feeling better. This test is still not scheduled as of right now. Taylor had her treatment and did well. She was still very quiet and not wanting to play. We had OT and speech that afternoon and it went so so. We had company from California, may college buddy Elise' and her boyfriend Spencer. I haven't seen her since John and I were married four years ago. We keep in touch and she wanted to see Taylor and is vacationing starting here in Memphis and traveling through TN to North Carolina and finally end in Massachutees(SP?). That evening we all went out to eat and see what Beale St. is like. One of the nurses that Taylor loves Paula Sullivan-Hill came to set with Taylor while we went out. This was a treat to us and we really enjoyed ourselves. Paula is such a wonderful person and she is a great friend to us too! Taylor was asleep when we arrived home. Paula said she was good but very quite and only wanted to watch movies.

Thursday, July 29 we started with radiation therapy. Taylor did well and we came back home to eat lunch. Taylor was like herself today and we were just amazed. We have no idea why she was not like this the other days. Taylor has been eating so much that we are concerned about her having a bowel movement. She had a large bowel movement on Tuesday but she is so distended from all the food she has been eating that she looks like she would pop like a balloon! We give her medication to help her but this wasn't working. As long as her counts are good we occasionally give her glycerin suppository or a baby laxative that is glycerin liquid. She really hates this and always puts up a fight. That evening we went out with Elise' and Spence. We all took a horse driven carriage ride thru downtown Memphis and we all loved it even Taylor. She was so excited about seeing the horses and petting them. The driver even had her dog with her who Taylor got a kick out of too. We all ate dinner at the Blue City Cafe and we had fried catfish. It was wonderful! Taylor went to sleep before we even arrived home. While we were out eating we unfortunately missed a friend that was traveling through Memphis. Brandi and Kylie Moran had stopped by to see Taylor on their way home. Sorry we missed you but hopefully we will get to bring Taylor home soon and Kylie can finally get to play with Taylor.

Friday, July 30 we went to pick up Elise' to take her with us to the hospital. Taylor had PT and OT this morning before her treatment. Elise' wanted to see what things she was doing in her therapies. Elise' is and OT in California. She works in the school system. During Taylor's PT we were not present. Lulie had her walking with the walker again. We are trying to get her use to the idea of us not being there. Elise' and Spence were very impressed with the hospital. I told them that everyone should visit this place and get a reality check, especially those people who have children. After therapy we went to radiation for her treatment. Taylor did well and Elise' and Spence left before her treatment was done. I really hated to see them leave. It was so great to have some close friends to come and visit us in this stressful and "not so normal life." We try to make things as close to home and normal. We all took it easy that evening while we played with Taylor.

Saturday and Sunday, July 31 and August 1. We had planned to attended the ice cream social at the Agricenter International but Taylor was very tired and wasn't feeling well. She did get sick a couple of times and spit up. She did complain of a headache and we gave her Tylenol a few times. So Saturday was a lazy day for us and we ordered pizza and watched movies. Sunday we had a big breakfast and Taylor seemed better that morning. That afternoon we went to the zoo to get some exercise and especially to get out of that apartment. It gets real boring and depressing when you are stuck inside a lot. Taylor enjoyed the zoo and saw lots of the animals and we took lots of pictures. We came home and cooked dinner and of course Taylor ate like she has been doing for the last few weeks. She did finally have a couple of bowel movements on Saturday. She has been sleeping a little better since the steroids have been decreased.

Today is Monday, August 2 and we had labwork today. We do not have the results since we did not have clinic today. I will let everyone know what they are after our clinic appointment tomorrow. Taylor had her treatment and did well. She was very sleepy and slept on the way back to the apartment. She didn't seem interested in eating when we arrived home. About a half hour later she awakened and ate some pizza and mashed potatoes and pudding. She seems very tired today like she was last week. After eating see wanted to go "night night" so of course we missed all our therapies. I called to let them know she was asleep and ask to reschedule for another day this week. Starting today Target House is having the second Camp Wishing Well for the kids and siblings. Their are many activities and games for the kids and we will take Taylor. She may not be able to do all the activities but we sure try. It has been very hot and humid and this really makes her and even us tired. I can't believe that she will be three in 13 days. Time sure does fly and she is growing up so fast even though she is fighting this horrible disease.

We hope to have a party for Taylor. We will be inviting our Target friends and some staff from the hospital. We hope that we have some family here too.

I want to say to everyone who has been so thoughtful and generous to help us through this stressful time THANK YOU FROM THE BOTTOM OF OUR HEART and continue to pray for us. We know that God is good and he will give us the miracle we want. We pray for all our St. Jude families and please don't forget to visit the websites of our St. Jude friends. We all need to know that we are thought of and we love to read our guestbook. I know I enjoy seeing all the people who are out there thinking of us. Again God Bless everyone and take care.

Love, Angie, John, and Taylor





Thank you for checking in
-Dee

Monday, July 26, 2004 5:16 PM CDT

Here is the latest information from Angi



Dear Dee,

Here is the latest on Taylor. On Wednesday, July 21 Taylor had her treatment early morning. They did a CT and MRI simulation to get ready for the focal radiation on Monday. These are films that they use to know exactly what areas to give the radiation to the head. Taylor was very tired and cranky after treatment so we were unable to attend her speech therapy. This was a very stressful day for me. We had to decide how many treatments for the craniospinal radiation we wanted to give. Our doctor and the radiologist did not agree on the amount of treatments and it was our decision to say whether she would receive 10 or 13 treatments. The more treatments would cause Taylor more problems later as she starting growing and developing.

On Thursday, July 22 we started our day with speech therapy. She did very well. We are trying to get her to ask for things in two to four sentence phrases. Sometimes this works and sometimes not. We had treatment next and she did fine. When she finally was awake she was eating pudding and drinking soda. Her appetite has increased due to the steroids. When she is awake she is always eating. She has several of the side effects from the steroids too. She had PT today and this was the first time I let the therapist work with her without me being there. Lulie has Taylor using a walker and Taylor wasn't too happy. Lulie, her therapist said she did pretty good with it. She appears and acts more tired this week and being sedated everyday doesn't make it any easier on her.

On Friday, July 23 Taylor had speech and PT before radiation. I let the therapist do their stuff without me there. I think sometimes with us there she doesn't cooperate with them. I think she feels we won't make her do what they want. After treatment and she awakened we went to our clinic for a visit. We saw Dr. Gajjar and his nurse Valerie to see how things were going. We told them that she was doing pretty good but she was still very irritable and not sleeping good. They feel that a lot of this is due to the steroids. They did reduce the dose again. She is now on 4 mg a day instead of 5 mg. They will continue to reduce the amount of steroid each week until she will be off of it when treatments are finishing. We decided on Thursday to do the 10 treatments so the last craniospinal treatment will be today. Granddad arrived on Thursday morning before we went to the hospital. She was very happy to see him. Taylor and Granddad have been playing together since he is back. We had dinner in Target 2 last night. The dinner was provided by Stage Road Church of Christ. This was for all the Target families. The rest of the evening we played and took it easy.

On Saturday, July 24 was a day of resting and playing for Taylor. Mom and dad were getting things packed to head back to WV after John arrives. We did go shopping at Target before John arrived. He got held up coming into Memphis due to bridge work. At least he made it here without any car problems. Mom and dad left after 7pm and drove most of the night. They didn't get home until 9am because they stopped and slept for several hours. This is a hard trip on any person. That evening John and I and Taylor watched TV and had pizza for dinner.

Sunday we did nothing at all. Taylor slept on and off and ate everytime she was awake. That evening John took her for a walk, but she was frightened by the noise that the locust made. They were not out very long. I did some cleaning and laundry that evening.

Today Monday, July 26 and we are home early because we did not have our speech and OT because she was still asleep after her treatment. She wasn't very cooperative in PT this morning. She didn't sleep very well.

Taylor had bloodwork today.
WBC 2.9, hemoglobin 11.3, platelet 178, ANC 2400.

Taylor weighed 12.9kgs which is almost 29lbs. She is really putting on the weight. When we arrived home she ate one and part of a powdered sugar doughnut and 3/4 of a scrambled egg. She has just started drinking chocolate milkshakes. This evening we will play and maybe go out for a walk. We had rain last night and it has cooled things down.

Thanks to everyone who continues to pray for us and the gifts and cards. It brightens our day when we receive any kind of encouragement from everyone. Continue to pray for Hannah, Ben, Aaron, Easton, Louie as we all fight this battle of these terrible diseases. Please continue to write in all the kid's guestbooks to let them know that we pray and think of them often. Please don't forget to check the other websites that are included on Taylor's site. They all need our prayers and words of encouragement too.
Take care and God bless all,
Angie




Thanks for checking in
-Dee

Tuesday, July 20, 2004 8:48 PM CDT

Angi had written me a long update and after all that time, her email wouldn't send it to me. I tried to write this just like Angi had read it to me.





THURSDAY JULY 15

Taylor received her treatment and did well. She also had OT and she did well although she was still a little sedated from the treatment.

She is weighing 12.4 kg (27.28 lbs). The steriods are making a big difference in her appetite and she's still eating very well. The steriods also seem to be causing Taylor to have trouble sleeping.

Taylor still remains busy playing with her toys and stickers, as well as watching Barney and Dinosaur.

She was seen in clinic today. There is nothing new to report except the doctors are happy to see Taylor back to herself after the tough week she just had.





FRIDAY JULY 16

Taylor is doing pretty good with the brace. She can stand for short periods of time while holding on to something, although Angi and Mimi remain right behind Taylor and ready to catch her.


Taylor finished her treatment and did very well. She had a speech appointment right after treatment. She did OK because she was still sedated and moody.

Taylor also had to give a urine specimen. She has an a Urinary Tract Infection and she was given an IV antibiotic and given a course of oral antibiotics to take later.

Taylor, Angi, and Mimi had a good evening at home and watched movies.



SATURDAY JULY 17

Taylor went back to the hospital to receive another dose of IV antibiotic. She also had to give another urine specimen to check to see if the antibiotics are doing their job.

In the afternoon, Taylor started having severe bouts of diarrhea. Taylor's bottom is extremely sore and she is so sensitive to the stool that she breaks out in a matter of minutes. She is being changed constantly to protect her bottom and it was a rough night for everyone because Angi and Mimi were constantly checking on her. Angi and Mimi are also making sure that Taylor is drinking plenty of fluids.



SUNDAY JULY 18

Taylor is still having constant bowel movements and remains very sore. She is also still eating like a pig. A shopping trip was planned for today, but cancelled. Everyone was afraid that Taylor would need to be changed and that a place to change her wouldn't be available and that it would make things worse.



MONDAY JULY 19

Angi met with the radiologist oncologist to see how things were going and get a few questions answered. Right afterwards Taylor had her treatment. Angi stated that Taylor did well, but Taylor is more tired and taking longer to wake up after her sedations.

The department staff is really nice and Taylor just loves the anesthesiologist that gives Taylor her sedation and he has really taken a liking to Taylor as well.

Taylor had blood work today. Her results were as follows:

WBC 3.7
Hemo 12.6
Plate 353
ANC 3500

Her blood counts have dropped due to the radiation. Taylor will have continue to have her blood checked once or twice a week.

Her weight today is 12.7 kg.

Taylor had speech today. She did so-so, again it was after treatment. It has been noted that Taylor's voice has sounded hoarse or gruff. It is believed to be due to the radiation. She has thrush (oral yeast infection ) due to her immune system deficit. She has started taking medication to help with the thrush.

While waiting for treatment, Angi, Mimi, and Taylor met Karina Hurtado and her family. There was good news for Karina today who also has ATRT. Karina's MRI and tests so far have been clean. This gives Angi more hope and faith to know that Karina is doing so well. Angi stated Karina's mom (I think her name is Marci) is very nice and Karina is so cute.



TUESDAY JULY 20

Taylor had PT today. She wasn't excited to play as she has been. She is more tired and her mood is still rocky due to the steriods.

Her blood work today was:

ANC 2.7
Hemo 11.6
Plate 346
ANC 2400

The drop in her lab work is from treatment she just had Monday.

She weighed 12.4 kg today.

The hospital was running behind in radiation today. Taylor didn't start her treatment until 11 am and this caused her to miss her OT appointment.

Taylor was seen in clinic today. She was able to take some Immodium on Monday and her diarrhea is better.

The UTI is beleived to resistant to the antiobiotics so her medication was changed.

The doctors lowered the steriod dosage to 5 mg instead of 6 mg. The steriods have to be decreased gradually. Taylor needs to remain on the steriods to keep the tumor swelling and pressure down during radiation.

Taylor is still eating and drinking well. She hasn't been as active. She is being sedated everyday along with the radiation so she's exhausted.

Angi said that they see Steven Segal ocassionally. They saw him Saturday while waiting for the elevator. He spoke to them, but Angi said he still looked very tired and is just like everyone else in this situation.

Aaron Hunter's bone marrow transplant he received from his brother is not taking and he has to have booster injectins.

Eason Wargo is beginning radiation.

Hanna really needs our prayers.

Louie is looking good. Angi saw him in PT with his mother, Kerin.

Ben Bowen just finished his lastest dose of inpatient "Big" chemo and seems to be doing okay.

Again, Angi wants to send a "Thanks" to all who have prayed, written, sent cards and gifts to Taylor. Everything is greatly appreciated.

Angi is hoping that in September when Taylor has her 4 week "break" that they all can make a trip back home to West Virginia.

Take Care and God Bless,
-Dee





Please continue to lift John, Angi, Taylor and Family up in Prayer. Also, if you have the chance, please check in with the other kids listed above to offer them your prayers and encouragement. I will be listing the links to the other children mentioned tonight so you can check on them as well. Don't forget to sign the guestbook

Wednesday, July 14, 2004 8:07 PM CDT

Here is the latest information from Angi



Hi to everyone,

Taylor had a pretty tough weekend, and the week started out not what we had planned. On Saturday she finally felt the effects of the increase on the seizure medication. That afternoon she was completely knocked out and we had a terrible time getting her to even awaken to drink or eat. I called the doctor who was in charge of Taylor while Dr. Gajjar was out of town. She felt that she had to much of the medication and to return to the original dose she was receiving. It takes this medicine several days to reach a peak level after the increase. It really scared us and I was trying to make sure it wasn't anything else like neurological symptoms. She was not better on Sunday so we headed to the hospital, and they agreed that it was due to the medication, and said to return to the original dose.

She ate very little that day or even drank much fluids. She did awaken a little that evening but it was not our Taylor. Monday came and she was just a little better. We went to speech and PT, but it was a struggle to get her to play like she usually does. I really feel sorry for her therapists when things don't go as well. After therapy we headed over to clinic to let them know what was going on and they worked us in. We saw Dr. Gajjar and Dr. Kahn to check out her situation. They both felt that she could be having an increase in her intracranial pressure or the tumor could be different since the MRI she had on Thursday.

They did a CT scan of her head and they checked the pressure of the fluid by inserting a very small needle into the Ommaya, which a tubing was connected to it, and while she was in a semi sitting up position watched as the fluid traveled up the tubing, and then they measured the amount in the tubing. Normal intracranial pressure is from 1 up to 20 but they like it to be on the lower side. Taylor's was 61/2 which they were pleased. The scan showed no change. They were still not sure all the symptoms she was having was due to the medicine. She was also having problems with raising the upper lid of her eyes and the right eye which is weak was now midline and it had not been since the second botox injection. She also wasn't talking very much and she wasn't holding herself up as well.

They did blood work also and her WBC 6.3,hemaglobin 11.5, platelets 355, ANC 5700. This was good results but we have not had any chemo since June 21.

I thought that they would hold off on the radiation that day, but they felt we needed to get started because there may have been some changes in the tumor that they were unable to see on xray, and they also increased the steroid to help with swelling which can happen as the tumor receives radiation. I was able to go in the radiation procedure room until she went to sleep, and I was also able to watch the first procedure, and what they do to prepare for the procedure. They take x-rays to make sure that they are in the correct area to give the radiation, and this takes a little longer the first time because they want everything exactly correct and once they are positioned correctly they give the treatment. The treatment probably only takes 10 seconds for each area they give the radiation. I was really having a hard time dealing with this. It is so hard to know what this radiation can do to her. She did well the first day and was still a little not herself that evening at home.

Tuesday came and we had PT, bloodwork and clinic and her second treatment. Her WBC 5.8,hemaglobin 11.4, platelets 378, ANC 4900 and she weighed 12kgs. She had lost a little bit of weight. She is eating better and she started becoming more herself Tuesday evening. We feel like a lot is due to the medicine and it takes it several days to clear her system and the only way to do this is she must void and she wasn't doing very much of that because she wasn't drinking enough.

Today she was like herself. She did good at speech today and well with her treatment. Her braces for her feet were fitted today and we hope this will help her with walking and maybe she can do that soon. She is talking up a storm and eating like a pig. The steroids can increase your appetite and make you moody.

I guess I will close and try to update this weekend. Again thanks to all who are praying and sending cards and gifts. We all appreciate every prayer and concerns for us. We are so grateful for the Lord and I know he will grant us a miracle!

Angie

Thursday, July 8, 2004 7:34 PM CDT

Here is an update from Angi

Dear Dee,

It is Saturday, July 10 and I wanted to give everyone the news about the MRI results on Taylor. The tumor has not changed in size and the small tumor that is in the old tumor area is no different. They said that the tumor has some cystic areas that have been present and this could be a good or bad thing. They have noticed some areas that look like old blood and they need to watch that she doesn't have real active bleeding. They are also concerned that with the changing of the tumor with radiation it could possibly cause blockage of the ventricles when the tissue dies. I know that I will be nervous constantly while the radiation takes place.

Taylor started the steroids on Thursday evening and has to take it three times a day. They also increased the seizure medication to three times a day which she was only taking twice a day.

Taylor is doing well with her therapies and I hope to see an improvement when we get through some of the radiation. On Friday she was fitted for the leg braces for the lower part of her legs. This will help with the foot drop that she has and to keep her from "bowing" her legs at the knees which prevents her from standing straight to walk with help. She still has problems with sitting upright but I hope this will also get better.

Taylor had only one of those unknown episodes yesterday and they are still baffled what this could be. It is funny that she can do the same thing when you ask her to demonstrate it but she still can have them without asking.

I want everyone to know that they need to follow with the progress of Easton Wargo at www.caringbridge.org/fl/easton and Aaron Hunter at www.caringbridge.org/il/aaronhunter.
Both of their mothers have been great about telling everyone about Taylor and Marilyn who is Aaron's mom has really been a great person to talk to and give me hope and encouragement. We are all like family here and we have to have faith, hope and many prayers to God to help our kids. Also Louie Hentz and his family need our prayers also. I'm not sure of a website for him but his mom is kerinhentz@fmr.com. Could you please include these websites to our list.

We are starting the first radiation therapy on Monday. She will have it everyday for five days a week for a total of six weeks. She won't be able to eat anything after midnight and she can have clear liquids 2 hours before the procedure. They have 10 to 15 kids for radiation that are 3 and under. They take the youngest children first so we won't be very early in the morning. This is always so hard because she is always asking for something to eat.

As always I want to thank everyone for all their prayers and the numerous cards and gifts to us and for all the people who sign our guestbook. We hope that these six weeks are not as difficult as I think they will be and I will be happy when John is back to be with us. We both miss him! My mom and dad have been great and I don't know what I would do without them!

God bless all and keep those prayers going and I hope God will give us a miracle.
Angie








Taylor began having possible seizure activity several days this past week. She would seem to attempt to cough then she would hold her breath, turn blue, and wave her arms. These episodes would last very briefly, a span of just a few seconds. She was taken to the clinic on Tuesday. The doctor was unsure of what was happening and referred Taylor to the neurologist. While she was with the doctor Taylor experienced 4 of these episodes. She had to have an EEG. The doctor is 98 percent sure that these are not seizures, but possible swelling of the brain and put Taylor on steroids.

Taylor went through simulation on Wednesday so the doctors could mark the area to receive radiation. She had to endure another MRI and CAT scan to assure the tumor has not changed before radiation begins. The results are suppose to be in tomorrow (Friday). Angi is very stressed right now and is on pins and needles. The doctor had to take a marker all over Taylor's body to show where they need to radiate. If the marker starts to fade, Angi has to run back to the hospital so Taylor can be re-marked. Taylor is due to begin radiation on Monday or Tuesday of next week. The doctors of course are trying to administer radiation that will be effective and cause the least amount of permanent side effects. Some of the side effects are loss of hearing, and hormone irregularities. Taylor could also have cognitive or learning problems. There is an 80 percent chance of these side effects occurring. There should not be any increase in speech problems or motor abilities. In addition to all the side effects already mentioned, Taylor could also have radiation burning. Radiation burning is where radiation will exit out the front of Taylor's body causing irritation of her throat and skin. Angi will need to apply special medication to Taylor's skin in help with this. Taylor still does not have much hair right now. She will lose what she does has, but her eye lashes are growing back in and she shouldn't lose them again. Within the first 2 weeks of radiation, Taylor could also have tumor swelling. The tumor could become "threatened" and become inflamed causing it to swell and put addition pressure on Taylor's brain. This could cause Taylor to have increased problems with her speech and balance, but these would temporary and diminish when the swelling subsides.

Taylor had blood work done this week and the results were:
WBC 2.7
Hemo 10.3
Plates 322
ANC 1600

Taylor has grown in the past few weeks. She was 89cm and is now 90.5cm tall which is 3/4 of an inch. She was weighing 12kg and is now at 12.3kg an increase of almost 10.5 ounces. Taylor is still not sitting up well. She had botox injections in both eyes recently. The left eye is fine, but the right is still inverted somewhat. Taylor is still insisting she feed herself and was getting macaroni everywhere while I was on the phone with Angi.

On to some positive news...On Monday, Ashley Simpson, singer and sister of Jessica Simpson, was at Target House. She sang and had photos taken with the children. Taylor had her "tv debut" as well. There was live television coverage of the event and there was footage of Taylor on the news. Also, on Wednesday 2 NASCAR drivers, Richard Petty and Casey Myers, visited Target House where they brought a simulation race car. They also had photos taken with the kids and signed autographs for them. Casey Myers is a hunk so I imagine this was as much a treat for the women as it was for the children. Marilyn, the mother of Aaron Hunter ((Aaron Hunter)), a five year old with neuroblastoma, took some pictures. Angi is going to try and get the pictures to me to post on Taylor's site.

There is no prejudice in cancer...The actor Steven Segal is at St. Jude's with his 7 year old daughter who was diagnosed with leukemia just 2 or 3 weeks ago. Angi stated she saw him and he looked like crap and was very haggard.

Please pass this site or information to everyone you can. Urgent prayers are needed for Taylor. Please continue to lift John, Angi, Taylor and their families in prayer.

Hanna is also experiencing a declining change in her condition. Please follow the link above and offer her family your prayers and encouragment.

There is a new link added above for Jophie. Please take the time visit his site.

New pictures of Taylor were posted this week. Don't forget to check them out.

Thank you and God Blesss
-Dee

Tuesday, July 6, 2004 4:01 PM CDT

NEW PHOTOS ADDED!!!



Angi met with the radiologist oncologist on Friday. The doctor spoke in detail to Angi and Mimi concerning the cranio-spinal radiation. After much consideration, it was decided it would be better to go with the cranio-spinal radiation instead of focal radiation.

Beginning this upcoming week, Taylor will have X-rays and other procedures in order to pinpoint the area for radiation. Taylor's radiation is scheduled to begin the week of July 12. She will receive 2 weeks of low dose cranio-spinal radiation, then 4 weeks of focal radiation. She will have a total of 6 weeks of aggressive treatment, then a 3 to 4 week "break" in which she will recieve a different form of chemo.

John is back in West Virginia and is expected to return to Memphis later in the month. Meanwhile, Mimi is helping Angi out.

Please continue to pray for John, Angi, Taylor, and their families for strength that is needed to get Taylor through her treatment. Please also pray that Taylor will not experience any deficits from the radiation. There are many potentail risks involved, mental and physical, for Taylor.

Thanks for checking in and God Bless
-Dee

Saturday July 3, 2004

NEW PHOTOS ADDED!!!



Angi met with the radiologist oncologist on Friday. The doctor spoke in detail to Angi and Mimi concerning the cranio-spinal radiation. After much consideration, it was decided it would be better to go with the cranio-spinal radiation instead of focal radiation.

Beginning this upcoming week, Taylor will have X-rays and other procedures in order to pinpoint the area for radiation. Taylor's radiation is scheduled to begin the week of July 12. She will receive 2 weeks of low dose cranio-spinal radiation, then 4 weeks of focal radiation. She will have a total of 6 weeks of aggressive treatment, then a 3 to 4 week "break" in which she will recieve a different form of chemo.

John is back in West Virginia and is expected to return to Memphis later in the month. Meanwhile, Mimi is helping Angi out.

Please continue to pray for John, Angi, Taylor, and their families for strength that is needed to get Taylor through her treatment. Please also pray that Taylor will not experience any deficits from the radiation. There are many potentail risks involved, mental and physical, for Taylor.

Thanks for checking in and God Bless
-Dee

Saturday, June 26, 2004 6:16 PM CDT

UPDATE TUESDAY JUNE 29, 2004

John and Angi had another consultation with Taylor's doctor and the radiologist oncologist concerning Taylor's next step in treatment. They are meeting with the surgeon on Wednesday to see if surgery is an option at this time.

John and Angi have been given some scenarios in which they need to decide which route to take. It's like being asked "in which foot do you want to be shot?"

One of the questions to be decided is to have focal radiation performed (just in the cranial area where the tumor beds are located) or full body radiation which includes the cranium and spinal column. Although no cancer cells are showing up in the spinal fluid, this could help eradicate any cancer cells that could grow. But there is the question of how it would affect Taylor long term.

On a lighter side, Taylor is eating well and she is continuing with her therapies. John, Angi, and Taylor spent Sunday at Mud Island where they enjoyed the museum and tram. They just needed to "get away" from the medical scene for a while.

Please keep John, Angi, and Taylor close to you in prayer. Also, pray that the right decisions are made concerning Taylor's treatment.


Thank you for checking and please don't forget to sign the guestbook.

God Bless
-Dee







John and Angi had the consultation with the doctors today. The results are not what we had hoped. The existing tumor has increased in size over the last 10 weeks. It still doesn't look as dense as it did in the beginning. Some cystic areas (fluid sacs) were noted. Also, an artery is located on top of the larger tumor and will need be presented to the surgeon.

There is also re-growth of the orginal tumor that was removed earlier. Due to the re-growth and continued increased size of the one tumor, Taylor is not longer eligilble for the protocol trial and St. Jude's.

On Monday, Taylor is expected to have a lumbar puncture to check her spinal fluid. If the doctors decided to perform focal radiation (concentrate on both tumor beds), Taylor's spinal fluid needs to be negative. If the spinal fluid is not negative, a different chemotherapy protocol will be determined. John and Angi could possibly find out the results of the lumbar puncture on Tuesday and meet with the radiation oncologist on Wednesday.

Taylor will also have her hearing and eyes checked on Monday. Taylor's good eye is going midline, but the other eye remains to the side.

Overall, Taylor is still the same and otherwise is eating well.

Please continue to keep John, Angi, and little Taylor close to you in prayer and pray for Taylor's healing.

Thank you for checking in and God Bless.

Please don't forget to sign the guestbook often so John and Angi will know who is checking in on them.

-Dee

Wednesday, June 23, 2004 12:58 AM CDT

ANOTHER UPDATE - Friday June 24 10:48 PM EST

Little Taylor's scans were performed today. John and Angi will meet with the doctors on Saturday to go over the results. I will update after their consultation.

I know everyone is anxious to hear any news, but right now I just don't have any other information to post. Please keep Taylor, John, and Angi close to you in your prayers. God Bless - Dee







Thursday June 24, 2004

UPDATE: Taylor was unable to complete her evaulation today because the nurses were not able to get her to go to sleep for the MRI. Taylor became "spirited" by the medication instead. Late Friday afternoon, Taylor will be sedated in order to have her evaluation. I will update as soon as I know anything. Continue to pray that all test results are cause for celebration. Thanks to all - Dee



I spoke with Angi this morning. Taylor has her evaulation on Thursday. Hopefully, Angi and John will have the results tomorrow as well. Please lift John, Angi, and little Taylor in prayer. Thursday is also Angi's cousin, Tara's, birthday. We are hoping she has one of the best birthdays ever!

Friday Blood Counts were:
WBC 2.2
Hemo 2.5
Plate 230
ANC 1700

Yesterday her counts were:
WBC 2.4
Hemo 8.7
Plate 246
ANC 1800

On Firday Taylor had Speech, Occupational, and Physical therapy. She is doing very well with OT and PT. She finished her last dose of oral chemo on Monday. Some improvements were noted on Saturday with Taylor's eyes. Although her eyes will change according to how tired she is.

Nurses from the OR where Angi works held a yardsale at the hospital and all proceeds went the Tyalor's Health Fund. Thank you to Brenda Stover, Pearl Eddy, Marianne Postlephwait and eveyone who helped or donated.

John and Angi would also like to express their appreciation to everyone involved in both elimation dinners (February and April), The Hibatchi fundraiser, the colt raffling, all the donations that have come from family, friends, and people across the nation that have never met the Watsons, but have graciously sent money, stuffed animals, books, cards, and sent prayers above for Taylor. Also, Thank You to family, friends, and the Monterey Free Will Baptist Church in Tennessee for donations for Taylor's DVD player.

Angi stated they now feel part of another family- one no one would want to be part of...a 2 year old with ATRT, and 8 month old with a kidney tumor, a mother with a 17 year old son with Medulloblastoma, and recently, and an Indiana girl around 7 or 8 years old. Saturday she found out she has inoperable brain tumor and is now at St. Judes receiving radiation. Unfortunatley, Angi's "new family" will continue to grow.

If you get the chance, go to Hanna's site and Ben's site today. Hanna has a few things going that she needs our prayers. Ben also had an evaulation on Tueday and they are expecting results today. Their links are listed above.

Thanks for checking in - Dee

Wednesday, June 23, 2004 12:58 AM CDT

I spoke with Angi this morning. Taylor has her evaulation on Thursday. Hopefully, Angi and John will have the results tomorrow as well. Please lift John, Angi, and little Taylor in prayer. Thursday is also Angi's cousin, Tara, birthday. We are hoping she has one of the best birthdays ever.

Friday Blood Counts were:
WBC 2.2
Hemo 2.5
Plate 230
ANC 1700

Yesterday her counts were:
WBC 2.4
Hemo 8.7
Plate 246
ANC 1800

On Firday Taylor had Speech, Occupational, and Physical therapy. She is doing very well with OT and PT. She finished her last dose of oral chemo on Monday. Some improvements were noted on Saturday with Taylor's eyes. Although her eyes will change according to how tired she is.

Nurses from the OR where Angi works held a yardsale at the hospital and all proceeds went the Tyalor's Health Fund.
Thank you to Brenda Stover, Pearl Eddy, Marianne Postlephwait and eveyone who helped or donated.

Angi stated they now feel part of another family- one no one would want to be part of...a 2year old with ATRT, and 8 month old with a kidney tumor, a mother with a 17 year old son with Medulloblastoma, and recently, and an Indiana girl around 7 or 8 years old who Saturday she found out she has inoperable brain tumor who is now at St. Judes receiving radiation. Unfortunatley, Angi's "new family" will continue to grow.

If you get the chance go to Hanna's site and Ben's site today. Hanna has a few things going that she needs our prayers. Ben also had an evaulation on Tueday and they are expecting results today. Their links are listed above.

Thanks for checking in - Dee

Wednesday, June 16, 2004 12:41 AM CDT

Hi Dee,

It is Tuesday night and I want to let everyone here how Taylor is doing. She received the botox injection of both eyes on Monday. John said she did well. She had some swelling and slight redness of both eyes. Her appetite has been much better since last week. She has been having good bowel movements now and I hope she continues. She had speech and OT on Monday and did well.

Today she had clinic and triage to check her blood work. Her WBC 1.6, hemoglobin 8.6, platelets 249, ANC 1200. Today's lab work had dropped slightly from Friday but she is still able to receive her chemo. She had PT today and they worked on pulling up and more crawling and she rode on the fire engine by pulling and pushing with her legs. Tomorrow she only has speech. Her weight was 12 kg.

It has still been hot and muggy there but they have had some rain. I can't wait to get back down there to be with the both of them. I miss Taylor but I'm so glad that John and I will have some time together!

Next week will be a very nerve racking for me since Taylor will receive her MRI on Thursday. I know that Dr. Gajjar will inform us that day of what her scan shows. Everybody pray for us and especially Taylor that God will give us this miracle of no existing tumor!

Again I, John and Taylor want to thank everyone for all their prayers and cards to Taylor and the both of us. We are so grateful that so many people have done such wonderful things to help us so that we are able to take care of Taylor. Again please pray for Dee's mother and every child that is here at St. Jude that they all can be cancer free and have a LONG AND HEALTHY LIFE! Don't forget to encourage people to be a Partner in Hope for these children. Take care and God bless all.

Angie



Little Taylor has her portable DVD player! Thank you to everyone who donated for Taylor's DVD player. She absolutely loves it! -Dee

Monday, June 14, 2004 3:23 PM CDT

Dear Dee,

Today is June 14 and I'm in Fairmont and this will be my last week to work and I will be in Memphis for 3 months. Taylor had a good week before I came home. St. Jude has a program called Camp Wishing Well for the patients and their siblings. This is provided so that the kids can go to camp like any other child. Taylor was able to do some of the activities with some help from me. She played bingo and made two picture frames. We met several college students who were there for a conference on leadership activities. They were given a tour of St. Jude and Target House. They all just took a liking to Taylor and were so nice. She enjoyed the attention. Each day at camp there was a different activity and some food or snacks were provided. The day that she was inside the moon bounce I became so upset that I cried because my little girl could not jump and stand in there and play like the other children. I was so happy that she was able to go inside and when she saw it she immediately wanted to go in. In her mind she still thinks that she can walk and do all the things as before. A cheer performance group from Massachusetts came on Friday to perform and this group was here because our doctor knows them personally.

On Wednesday, June 9th my sister Sally came to visit us. It was really good to see her and I think she really enjoyed herself. She went with us to the hospital to see what it was like and watch Taylor at her therapies. She played with Taylor at the apartment with her blocks and with the stickers she brought her from her school.
Taylor loved these stickers so much that she went out and bought more. On her last day to visit her mother Carole and husband Jim visited with us. Carole has been very good about sending Taylor things and I think everyone in her town knows about Taylor.

On Monday, June 7 Taylor had blood work. Her counts were WBC 1.3, hemoglobin 8.6, platelets 240, ANC 700. The clinic repeated the blood work on Friday, June 11.
Her counts were WBC 1.9, hemoglobin 9.3, platelets 253, ANC 1300. The clinic thought for sure that her counts would drop due to the chemo but they got a surprise. If her ANC dropped below 500 they would discontinue the oral chemo and not restart it. I was so happy her counts increased.

Again as I have said many times that I thank each and every person who sends any card, gift and their thoughts and prayers. I thank every person who visits this website and writes to us to let us know they are thinking of us.

I also would like everyone to know that we need to pray for Dee's mother who is very ill. She has been so great to help us with the website and any other things I have spoke to her about.

When I have the time or access to a computer I will try to help with the updates on Taylor.
Everyone take care and God bless you,

Angie

Saturday, June 5, 2004

A small update on Taylor:

Taylor's lab work for Tuesday was:
WBC 2.1
Hemo 8.4
Plat 251
ANC 1100

She is still at 12 kg and is almost 3 feet tall now. She didn't have OT this week, but she did have Speech and PT.

She has been playing with her puzzles and baby dolls, and of course, watching Barney.

Taylor, Mimi, and Angi went out Wednesday and Angi said Tayor ate like a little pig, but on Thursday and Friday, her appetite was "hit and miss".

Angi's sister, Sally, is going to Memphis from OH on Tuesday to visit with Taylor. Please pray she has a safe trip and Taylor is able to enjoy her visit with Aunt Sally.

Taylor went to activity this week where there was a dunking booth. A nurse had graciously volunteered to be the "dunkee". Taylor tried to hit the bullseye with the balls but couldn't hit the target, so Taylor hit the bullseye with her hand instead. She got a big kick out of seeing the nurse get dunked and stood there and laughed.

Please continue to lift Taylor, Angi, and John up in prayer. Please don't forget to add prayers for Angi and John's families as well. I think Mimi has spent more time in Memphis this year than in Beckley.

I will update as I get information.



I spoke briefly with Angi today. The only thing Angi and Mimi had to deal with going to Memphis on Friday was traffic. Other than that, they made it just fine. They left Beckley around 9pm on Friday and made it to Target House between 7:30 and 8am on Saturday.



Taylor had bloodwork on Sunday. The results were:
WBC 1.5
Hemo 9
Platelets 88
ANC 1100

On Monday her results were:
WBC 1.4
Hemo 8.2
Platelets 165
ANC 800

You can see the normal range listed above.

Tuesday, Taylor will get her injection in her head and she also begins her oral medication that she will receive everyday for the next three weeks.

Taylor's appetite still varies. Some days good, some days not so good. She is now weighing 12 kg (26.4 lbs). She has lost more hair due to the last high dose chemo treatment. She has also lost all her eyelashes and she now has very faint eyebrows. She has been a little pale and doesn't seem to be feeling well. If her hemoglobin falls below 8 she will recieve a blood transfusion. The chemo is believed to have knocked it down. Taylor is still taking all her meds and has been going potty better. She seems to have continued problems in this area. There doesn't seem to be changes in her speech. She does seems to be a little weaker.

Taylor is on her way to getting the DVD player. Thank you for all the people graciously donating for Taylor. If anyone is interested, please send the money directly to Angi "earmarked" for the DVD player. Angi also mentioned Taylor is really getting into Barney. If you have any videos to donate, that would be appreciated as well. Target House provides Taylor with a VCR in the "apartment", so VHS will be fine.

Please continue to lift John, Angi, and Taylor up in prayer.





Here is an entry from the Guestbook that I thought needed to be posted here:


Tayor and family,

I check your web site many times and fail to sign the guestbook as many people must be doing also. I see the number of "hits" going up 100 to 200 each day, but only a few sign.

Here is a plea to all who visit your site to please sign the guestbook. Yes, sometimes the words don't come easily, but please sign!!! Even if you just say "Hi", Angi and John will know we are thinking of them.
Edie

Beckley, WV usa - Wednesday, May 19, 2004 2:45 PM CDT

I've also added another link for a family that needs our prayers and encouragement. Austin is a six year old who has fought cancer since he was 2 years old. Now his brother Cole, 10, was recently diagnosed with ALL. As of now both brothers are in the hospital, but they can't be near each other. Please pray for Austin and Cole's recovery, but also for their parents, Bobbi Jean and Tim.

A Sad Fact - I could probably add a new link everyday for a child who needs our prayers and I don't think I would be able to get them all listed.



Angi has been talking about ways to occupy Taylor when she is inpatient for several days. Since Taylor really enjoys her movies and Angi doesn't feel right about spending any donations on this, I've decided to start a fund just for a portable dvd player for Taylor. I've been looking on the internet and portable dvd players are running around $200. After much debate, I decided it would be better if anyone wants to donate just for the dvd player, to send the money directly to Angi with a note stating the money is to go toward the dvd player. After keeping up with many, many, many CaringBridge sites over the years, portable dvd players seem to be the way to go to occupy children that are inpatient. Any and all donations are appreciated. Angi could also use some gift cards. She did say there was a Walgreens close by. I think they may even have gift cards.



Thank you....Dee

Friday, May 28, 2004 6:16 PM CDT

Dear Dee,

Today is May 28, and I want to update the site before we head to Memphis. Taylor had blood work on Thursday. The ANC 2400, WBC 4.2, hemoglobin 10.2, and the platelets was 66. She also weighed 11.9 kg. John stated that she has been eating much better. She also did very good at her therapy visits. They told John in her speech therapy that we need to find toys or activities that sing or say a sentence so that she can begin to put more words and sentences together. The therapist in PT said it would be good if we had a toy that she can sit on to pull and push with her legs, and also be able to grip the handles, to give her more strength in her legs. She must be able to grip the riding car so that she will be able to use a walker. John has been trying to get her on a schedule of sleeping so that she is not cranky in the morning. She has never had a specific bedtime but she truly needs one. This weekend we have to have blood work on Sunday and Monday so that she is ready for her injection on Tuesday in her head and she will start her oral chemo on Monday.

I hope the holiday will be good to us and everyone who is traveling to see loved ones.

As always I want to thank each and every person who has been so thoughtful with their cards, gifts and donations. We appreciate this from the bottom of our heart. Again God bless everyone and thank you for the prayers to all of us.
Angie




Here is an entry from the Guestbook that I thought needed to be posted here:


Tayor and family,

I check your web site many times and fail to sign the guestbook as many people must be doing also. I see the number of "hits" going up 100 to 200 each day, but only a few sign.

Here is a plea to all who visit your site to please sign the guestbook. Yes, sometimes the words don't come easily, but please sign!!! Even if you just say "Hi", Angi and John will know we are thinking of them.
Edie

Beckley, WV usa - Wednesday, May 19, 2004 2:45 PM CDT

I've also added another link for a family that needs our prayers and encouragement. Austin is a six year old who has fought cancer since he was 2 years old. Now his brother Cole, 10, was recently diagnosed with ALL. As of now both brothers are in the hospital, but they can't be near each other. Please pray for Austin and Cole's recovery, but also for their parents, Bobbi Jean and Tim.

A Sad Fact - I could probably add a new link everyday for a child who needs our prayers and I don't think I would be able to get them all listed.



Angi has been talking about ways to occupy Taylor when she is inpatient for several days. Since Taylor really enjoys her movies and Angi doesn't feel right about spending any donations on this, I've decided to start a fund just for a portable dvd player for Taylor. I've been looking on the internet and portable dvd players are running around $200. After much debate, I decided it would be better if anyone wants to donate just for the dvd player, to send the money directly to Angi with a note stating the money is to go toward the dvd player. After keeping up with many, many, many CaringBridge sites over the years, portable dvd players seem to be the way to go to occupy children that are inpatient. Any and all donations are appreciated. Angi could also use some gift cards. She did say there was a Walgreens close by. I think they may even have gift cards.



Thank you....Dee

Wednesday, May 26, 2004 2:42 PM CDT

Angi provided us with another update on Taylor:

Hi Dee,

Today is Wednesday, May 26 and I want to give everyone an update on Taylor.

Taylor is feeling much better and she had lab work on Tuesday. Her WBC was 17.8, hemoglobin 9.7,platlets 79, ANC 1307, and she weighed 12.0 kg. This is a big change in her labs compared to Saturday. Due to the G-shots her LDH is extremely high at 2064. This is lab work that is used to check how the liver functions are responding to everything. Other lab work is drawn to check how her body metabolizes the chemo threw her liver and kidneys. As you know we all must have good functioning organs to excrete all drugs we are given so we do not become toxic from their effects.

She saw the eye doctor on Monday and they want to give her a botox injection again in a few weeks. This time they want to do both eyes because her left eye is also weak. Due to the sixth cranial nerve the brain is responding the same way with her good eye and it is turning in too. So I guess when I am there she will have the surgery again before her evaluation the week of June 21.

They went to the zoo on Monday but John said it was so hot that she seemed uncomfortable. They did not see very much. She has had speech,PT,OT the last three days and is doing well. Her appetite has been better and she finished her last dose of Vincristine yesterday. YEAH! Starting next week she will start her chemo by mouth for three weeks and she has one more injection in her port in her head. I can't believe we have almost completed 20 weeks of chemo. We don't know what will be the next step but we will do all we have to do so she is well again. The summer is around the corner and I hope we are able to enjoy it somehow. I really wish she could go swimming. She was doing so well last year and she loved the water.

I will be traveling to Beckley tomorrow then Mom and I will be leaving Friday night for Memphis. I can't wait to see her and hug and kiss her and play like we do.

Again thank you to everyone who writes to us through the website and for all your cards, prayers, and encouragement. We are very thankful that we have the Lord to help us and he can bring us a miracle to heal our daughter. Take care and I will call or update soon.


You can now E-mail me here thru the hospital at acw1963@yahoo.com


Angie








Here is an entry from the Guestbook that I thought needed to be posted here:


Tayor and family,

I check your web site many times and fail to sign the guestbook as many people must be doing also. I see the number of "hits" going up 100 to 200 each day, but only a few sign.

Here is a plea to all who visit your site to please sign the guestbook. Yes, sometimes the words don't come easily, but please sign!!! Even if you just say "Hi", Angi and John will know we are thinking of them.
Edie

Beckley, WV usa - Wednesday, May 19, 2004 2:45 PM CDT

I've also added another link for a family that needs our prayers and encouragement. Austin is a six year old who has fought cancer since he was 2 years old. Now his brother Cole, 10, was recently diagnosed with ALL. As of now both brothers are in the hospital, but they can't be near each other. Please pray for Austin and Cole's recovery, but also for their parents, Bobbi Jean and Tim.

A Sad Fact - I could probably add a new link everyday for a child who needs our prayers and I don't think I would be able to get them all listed.



Angi has been talking about ways to occupy Taylor when she is inpatient for several days. Since Taylor really enjoys her movies and Angi doesn't feel right about spending any donations on this, I've decided to start a fund just for a portable dvd player for Taylor. I've been looking on the internet and portable dvd players are running around $200. After much debate, I decided it would be better if anyone wants to donate just for the dvd player, to send the money directly to Angi with a note stating the money is to go toward the dvd player. After keeping up with many, many, many CaringBridge sites over the years, portable dvd players seem to be the way to go to occupy children that are inpatient. Any and all donations are appreciated. Angi could also use some gift cards. She did say there was a Walgreens close by. I think they may even have gift cards.



Thank you....Dee

Sunday, May 23, 2004 12:04 AM CDT

Dear Dee,


It is Sunday, May 23 and I'm writing this at 12:50am. I wanted everyone to know how Taylor is doing since she had her transfusion on Thursday. The transfusion went well and John said he could tell that she felt better and she was eating more that evening. I always try to talk to her when I call and she was watching television and playing with her blocks. Keeping her attention when she is watching television is quite hard to do if your trying to talk to her on the phone. On Friday she had blood work. Her white blood count was . 3, ANC 100, hemoglobin 9.2, and her platelets were 42. When the platelets are below 50 she must have a platelet transfusion and she received this on Friday afternoon. The transfusion went well and they went back to the apartment. On Saturday the Spongebob Square pants activities started and John took her downstairs in Target House. Her ANC was below 500 and can you believe he was able to get her to wear a mask. He explained to her that if she did not wear the mask he would not take her to the event. She had to return to the hospital Saturday afternoon to check her counts again. Her white blood cells was . 2, ANC 0, platelets 86, hemoglobin 9.1. When the ANC is zero we have been told that this means that the cancer is responding to the chemo. It will increase with the help of the G-shots that she hates so much. We have only seen the count at zero three times, but this does not mean that it hasn't been that low before, because she does not have blood work everyday, and we have been giving the shots since she was discharged from the hospital last week. They will probable have blood work the beginning of this week to check counts. She has an appointment on Monday for an eye checkup to examine her eye that received the injection in April. Thank goodness she will receive her last dose of Vincristine this week. This is the chime drug which has caused so many problems with weakness of her muscles. Dr. Gajjar and Tracy said this is the reason why her eyes are so weak and she has a problem with her bowels. John said it has really been hot and muggy there this week. He should have been here Friday night when we were hit with a horrible storm and a tornado warning and I think some parts of Fairmont and surrounding areas received some damage. It really scared me and my neighbor Debbie called me to warn me of this and to close my windows and get to the basement if I had to. This week at work has been busy and I have worked overtime a few days for extra money.

I'll be glad to return to Memphis next weekend and be back with her. My sister is trying to make a trip next month and my friend from California is coming in July. This will be great to have the company and they will see how Taylor is doing. I will go for now and before I leave next week I will update everyone on Taylor's progress.

Angie





Here is an entry from the Guestbook that I thought needed to be posted here:


Tayor and family,

I check your web site many times and fail to sign the guestbook as many people must be doing also. I see the number of "hits" going up 100 to 200 each day, but only a few sign.

Here is a plea to all who visit your site to please sign the guestbook. Yes, sometimes the words don't come easily, but please sign!!! Even if you just say "Hi", Angi and John will know we are thinking of them.
Edie

Beckley, WV usa - Wednesday, May 19, 2004 2:45 PM CDT

I've also added another link for a family that needs our prayers and encouragement. Austin is a six year old who has fought cancer since he was 2 years old. Now his brother Cole, 10, was recently diagnosed with ALL. As of now both brothers are in the hospital, but they can't be near each other. Please pray for Austin and Cole's recovery, but also for their parents, Bobbi Jean and Tim.

A Sad Fact - I could probably add a new link everyday for a child who needs our prayers and I don't think I would be able to get them all listed.



Angi has been talking about ways to occupy Taylor when she is inpatient for several days. Since Taylor really enjoys her movies and Angi doesn't feel right about spending any donations on this, I've decided to start a fund just for a portable dvd player for Taylor. I've been looking on the internet and portable dvd players are running around $200. After much debate, I decided it would be better if anyone wants to donate just for the dvd player, to send the money directly to Angi with a note stating the money is to go toward the dvd player. After keeping up with many, many, many CaringBridge sites over the years, portable dvd players seem to be the way to go to occupy children that are inpatient. Any and all donations are appreciated. Angi could also use some gift cards. She did say there was a Walgreens close by. I think they may even have gift cards.


Thank you....Dee

Sunday, May 23, 2004 12:04 AM CDT

Dear Dee,


It is Sunday, May 23 and I'm writing this at 12:50am. I wanted everyone to know how Taylor is doing since she had her transfusion on Thursday. The transfusion went well and John said he could tell that she felt better and she was eating more that evening. I always try to talk to her when I call and she was watching television and playing with her blocks. Keeping her attention when she is watching television is quite hard to do if your trying to talk to her on the phone. On Friday she had blood work. Her white blood count was . 3, ANC 100, hemoglobin 9.2, and her platelets were 42. When the platelets are below 50 she must have a platelet transfusion and she received this on Friday afternoon. The transfusion went well and they went back to the apartment. On Saturday the Spongebob Square pants activities started and John took her downstairs in Target House. Her ANC was below 500 and can you believe he was able to get her to wear a mask. He explained to her that if she did not wear the mask he would not take her to the event. She had to return to the hospital Saturday afternoon to check her counts again. Her white blood cells was . 2, ANC 0, platelets 86, hemoglobin 9.1. When the ANC is zero we have been told that this means that the cancer is responding to the chemo. It will increase with the help of the G-shots that she hates so much. We have only seen the count at zero three times, but this does not mean that it hasn't been that low before, because she does not have blood work everyday, and we have been giving the shots since she was discharged from the hospital last week. They will probable have blood work the beginning of this week to check counts. She has an appointment on Monday for an eye checkup to examine her eye that received the injection in April. Thank goodness she will receive her last dose of Vincristine this week. This is the chime drug which has caused so many problems with weakness of her muscles. Dr. Gajjar and Tracy said this is the reason why her eyes are so weak and she has a problem with her bowels. John said it has really been hot and muggy there this week. He should have been here Friday night when we were hit with a horrible storm and a tornado warning and I think some parts of Fairmont and surrounding areas received some damage. It really scared me and my neighbor Debbie called me to warn me of this and to close my windows and get to the basement if I had to. This week at work has been busy and I have worked overtime a few days for extra money.

I'll be glad to return to Memphis next weekend and be back with her. My sister is trying to make a trip next month and my friend from California is coming in July. This will be great to have the company and they will see how Taylor is doing. I will go for now and before I leave next week I will update everyone on Taylor's progress.

Angie

Thursday, May 20, 2004 7:30 PM CDT

Angi sent me this update:



Dear Dee,

Today is Thursday May 20 and I wanted to let everyone know how Taylor is doing. John stated that Taylor has been doing very good with speech and OT. Both of her therapists can see much improvement with her hand and eye abilities and her speech is getting stronger and her words are very clear at times. This is a big change compared to what she was experiencing last week. Her blood work on Tuesday had improved, hemaglobin is 8.3,white blood cells 3.6,ANC 3400, and platlets 167. This was an improvement from the blood work on Friday. She has been pulling up and getting on the couch, and she likes to get down without our help. We are always there to help because we worry she could hurt herself even though we have a mat and pillows placed on the floor so she is able to play with her toys .

On Tuesday they had a dinner given by the Target team members for the families and there was a Purinia K-9 jumping dogs show for the families after the dinner. She really enjoyed the show and John said she was laughing at the dogs. I really hate that I had to miss this with them. When they were at the hospital on Wednesday they had a thing called Elepalooza which was held in the Danny Thomas Pavillion. They had games and things for the children but she missed it due to OT and speech. There is always something going on or some kind of functions doing something for the children. She also saw Tony the Tiger that is the logo for the corn flakes cereal.

I spoke to John today after work and she had lab work today and of course her hemaglobin is 7.2,ANC 200 and he did not know the platlet count because it was not complete. They had to return back to the hospital at 4:00pm to receive blood again.

This is the third unit of blood she has received since we started all her treatment. He said she seemed tired and less active and she looked pale. I hope this makes her feel better and she can continue to improve everyday. She missed the zoo visit this evening because of the transfusion.

Again I will try to update you this weekend on Taylor and I always want everyone to know that we are very thankful for all the prayers and cards and the visits to the website. We enjoy your writings and and encouragement from everyone. Again thanks to everyone and God bless you and we are always praying and keeping our faith and hope.


Angie



Here is an entry from the Guestbook that I thought needed to be posted here:


Tayor and family,

I check your web site many times and fail to sign the guestbook as many people must be doing also. I see the number of "hits" going up 100 to 200 each day, but only a few sign.

Here is a plea to all who visit your site to please sign the guestbook. Yes, sometimes the words don't come easily, but please sign!!! Even if you just say "Hi", Angi and John will know we are thinking of them.
Edie

Beckley, WV usa - Wednesday, May 19, 2004 2:45 PM CDT

-dee

Wednesday, May 19, 2004 3:03 PM CDT

Here is an entry from the Guestbook that I thought needed to be posted here:


Tayor and family,

I check your web site many times and fail to sign the guestbook as many people must be doing also. I see the number of "hits" going up 100 to 200 each day, but only a few sign.

Here is a plea to all who visit your site to please sign the guestbook. Yes, sometimes the words don't come easily, but please sign!!! Even if you just say "Hi", Angi and John will know we are thinking of them.
Edie
Beckley, WV usa - Wednesday, May 19, 2004 2:45 PM CDT




Dear Dee,
Today is Sunday, May 16 and we all arrived home this morning at 7:30am. What a long trip. Taylor was sent home on Friday from the hospital. She had to have an IV solution that was connected to a pump for fluids, the chemo depleted her potassium and magnesium below normal levels. We took her to the hospital on Saturday to get blood work to check her potassium and magnesium levels to determine if they could discontinue the IV, and they were within normal range so they did removed the IV. She is feeling a little better and trying to eat more. She weighed 12.6kgs on Friday and she was 12.3kgs on Tuesday she has gained some weight. She is having problems moving her bowels and she receives all these medicines to help with no results. But she hasn't eaten very much the last several days. We cannot give her any type of enemas or suppositories because her blood count is so low and the risk of infection is too great. She has so much trouble with constipation and one of the chemo drugs causes severe constipation. This is the same drug that has caused most of her side effects. They finally decided that the neurotin is the drug that caused her staring episodes and the speech difficulty. The neurologist decreased the dosage from 3.0ml to the original dose of 2.5ml. I wanted to "ween" her off the medicine, but the neurologist explained that if she would have another seizure, that was too severe she could have further complications and possibly brain damage if the seizures were not under control. He stated that this is a very safe drug for children with seizures, but he always tried to eventually discontinue the medicine if the child presented with no other seizure activity.

I spoke to John this morning and he was playing with her and she would not eat much for breakfast. He did say that she ate good for him last night and slept well. She was able to keep all of her meds down yesterday and so far today. Her ANC is only 300 and her blood work will be drawn on Tuesday to see if all her counts have decreased more that will make her more at risk for infections. She is required to wear a mask when it is below 500, so she cannot be exposed to crowds or play with other children and we have to watch her about handling toys and other things.

She has a light day tomorrow only speech and OT. I know she is supposed to have her chemo on Tuesday. There are a lot of activities going on this week at the hospital and at the Target House. This is the 5 year anniversary of Target House and Nickelodeon will be having activities for the children and the theme is Spongebob Squarepants. I believe this will last for a month. On Thursday, May 20 the Memphis Zoo has a day at the zoo for just the St. Jude children and families. I hope she is able to go.

Taylor and I have been involved with a few activities to help raise money for St. Jude. We posed for pictures to be used for adds in the Target stores and I spoke to the people at St. Jude about our story and what it is like to have a child with cancer. We are so thankful for this place, and the dedication, the research, and the knowledge and experience of all the staff at St. Jude. We have met so many people and families going through the same thing. We have become so close to many of the staff and feel like they are our family.

One thing I want to say and especially stress to anyone who reads this, if you have a giving and caring heart you should contribute any amount of money to St. Jude, so that they are able to continue with their research to find cures for these childhood cancers. Every child deserves to live a long and healthy life and should never be turned away.

No individual person has no idea what it is like to have a child who has cancer, expect the families that are now battling this and the families who have lost their child to such a horrible disease.

To every person thank you for all your cards, gifts, thoughts and prayers to us.

We appreciate everything you have done. God bless you all and continue to pray for us that we are able to win this war.
Angie

Thursday, May 13, 2004 9:03 PM CDT

Here is an email from Angi. She emailed this information to me on Wednesday, but due to technical difficulties, I didn't receive it until tonight.


Dear Dee,
Taylor was admitted to the hospital yesterday evening to start her high dose chemo. They started after midnight with the chemo. In the last few days since I spoke with you that Taylor is still having more of the staring episodes. Her speech is not as clear with even the easy words that she ha been saying.

The ENT visit went well and she has no more weakness of the vocal cords and we hope that we will be able to quit thickening her liquids.

Tomorrow she will receive her injection of chemo in her Ommaya (the port in her head). Her appetite still isn't very good. She vomited this morning after I gave her some of her meds. by mouth. She had already eaten breakfast too.

Last night before we arrived at the hospital she vomited after dinner and she also had received her meds. I think the milk of mag and neutrotin cause some of the problem.

The doctors and nurses who work directly with our doctor are watching and aware of the changes and are not sure what is going on.

The nurse practitioner who works with Dr. Gajjar thinks it could be the neutrotin.

Today OT was with her in the room and she placed beads that can be used to make necklaces and bracelets on a "pipe cleaning" stick that had shiny paper like wrapping paper on them. She did very well, Dorian her therapist was trying to get her to use her thumb and index finger to pick them up and place them on the stick and push them down to stack the beads. It is so amazing how hard she works and continues too! I'm so proud of her!

I will try to write again before I leave and let you know her status or I will call you.

I will be traveling back to Fairmont on Saturday and mom and dad will return to Beckley, while John and his dad will be here for two weeks. This is the hardest thing for me to do every two weeks,LEAVE HER!

In June I will be taking a leave of absences for 3 months and this will be great!

Take care and thanks for your help with her website.

You can now E-mail me here thru the hospital at acw1963@yahoo.com

-Angi




Angi has been talking about ways to occupy Taylor when she is inpatient for several days. Since Taylor really enjoys her movies and Angi doesn't feel right about spending any donations on this, I've decided to start a fund just for a portable dvd player for Taylor. I've been looking on the internet and portable dvd players are running around $200. After much debate, I decided it would be better if anyone wants to donate just for the dvd player, to send the money directly to Angi with a note stating the money is to go toward the dvd player. After keeping up with many, many, many CaringBridge sites over the years, portable dvd players seem to be the way to go to occupy children that are inpatient. Any and all donations are appreciated. Angi could also use some gift cards. She did say there was a Walgreens close by. I think they may even have gift cards.



I received a fantastic email from Lee Ann McGraws-Meadows -
The Papa John's in Beckley has picked Taylor as their fundraising project for the rest of the year!!! So order Papa Johns Pizza!



Please visit Cameron's web site. He's having a very rough time. He could really use our prayers and encouragement. You can follow his link above. I have been keeping up with Cameron for a very long time now. Almost from the beginnng of his fight with Medulloblastoma. He's very dear to my heart and I appreciate all the prayers, encouragement, and guestbook entries that you are taking the time to give.

Also, please don't forget to sign the Guestbook. The counter at the bottom of the page is going up very quickly, but there's not a lot of messages being left in the guestbook everyday. Even if you just say "Hi" or "Thinking of you", please sign in. John and Angi would like to know who is checking in on little Taylor.



-dee

Tuesday, May 11, 2004 12:15 AM CDT

Don't forget the follow the link directly above to see Taylor's New Smile Quilt that so many volunteers have graciously made for her. Thank you, Smile Quilts.

I spoke to Angi last night and she gave me an update on Taylor.

First of all, Taylor could not be admitted as an inpatient Monday because all the beds were full. Hopefully they will be able to get a bed for Taylor today so she can start her Chemo. Her ENT test was postponed until today (Tuesday).

Taylor missed Physical and Occupational Therapy on Monday. A few things were happening with Taylor that was throwing up some flags to Angi so Taylor had an EEG and CAT scan instead. All tests were normal and no changes and no new lesions. The EEG was normal for her age. Some differences in Taylor's speech had been noticed by Sara, her speech pathologist, as well as Taylor's family. Taylor's speech has not been as good. Taylor has also been staring as if in a daze for a few seconds then she would seem fine. She would put her hands behind her head and hold her head. When asked if her head was hurting, sometimes she would state "no" and sometimes "yes". Taylor has also been taking extremely long naps during the day. Usually about three hours. Taylor's neurologist thought Taylor was doing fine, but had noticed Taylor's good eye deviating inside. So all these things happening to little Taylor warranted a trip to radiology. Taylor's doctors upped her seizure medicine from .25 to .5. It may take up to a week to see any results in the seizure medicine.

Taylor's appetite has been up and down. Good one day and not so good the next. Hopefully everything going on is a side effect from the Chemo.

Normal Blood Counts
WBC [4.0-12.0]
Hemoglobin [11.5-14.5]
Platelets [150,000-450,000]
Absolute Neutrophils (ANC) [1,400-6,600]


Taylor's Blood Counts were:
ANC 1700
Hemoglobin 9.7


Taylor did go to the zoo with Hannah, Eli, and Ben. They arrived at the zoo at 10am. Angi stated she thinks that every child in Memphis was at the zoo that day. She heard there was 3,000 kids there that day and the zoo was booming, wild , and crazy. Too bad Taylor missed most of it. She fell asleep at 11am and slept for three hours.

Angi has been talking about ways to occupy Taylor when she is inpatient for several days. Since Taylor really enjoys her movies and Angi doesn't feel right about spending any donations on this, I've decided to start a fund just for a portable dvd player for Taylor. I've been looking on the internet and portable dvd players are running around $200. After much debate, I decided it would be better if anyone wants to donate just for the dvd player, to send the money directly to Angi with a note stating the money is to go toward the dvd player. After keeping up with many, many, many CaringBridge sites over the years, portable dvd players seem to be the way to go to occupy children that are inpatient. Any and all donations are appreciated. Angi could also use some gift cards. She did say there was a Walgreens close by. I think they may even have gift cards.



I received a fantastic email from Lee Ann McGraws-Meadows -
The Papa John's in Beckley has picked Taylor as their fundraising project for the rest of the year!!! So order Papa Johns Pizza!



Please visit Cameron's web site. He's having a very rough time. He could really use our prayers and encouragement. You can follow his link above. I have been keeping up with Cameron for a very long time now. Almost from the beginnng of his fight with Medulloblastoma. He's very dear to my heart and I appreciate all the prayers, encouragement, and guestbook entries that you are taking the time to give.

I will update on the ENT and chemo situation as soon as hear something from Angi. Please continue to lift Taylor, Angi, John, and their families up in prayer.

Please sign the guestbook.


-dee

Tuesday, May 11, 2004 12:15 AM CDT

I spoke to Angi last night and she gave me an update on Taylor.

First of all, Taylor could not be admitted as an inpatient Monday because all the bed weres full. Hopefully they will be able to get a bed for Taylor today so she can start her Chemo. Her ENT test was postponed until today (Tuesday).

Taylor missed Physical and Occupational Therapy on Monday. A few things were happening with Taylor that was throwing up some flags to Angi so Taylor had an EEG and CAT scan instead. All tests were normal and no changes and no new lesions. The EEG was normal for her age. Some differences in Taylor's speech had been noticed by Sara, her speech pathologist, as well as Taylor's family. Taylor's speech has not been as good. Taylor has also been staring as if in a daze for a few seconds then she would seem fine. She would put her hands behind her head and hold her head. When asked if her head was hurting, sometimes she would state "no" and sometimes "yes". Taylor has also been taking extremely long naps during the day. Usually about three hours. Taylor's neurologist thought Taylor was doing fine, but had noticed Taylor's good eye deviating inside. So all these things happening to little Taylor warranted a trip to radiology. Taylor's doctors upped her seizure medicine from .25 to .5. It may take up to a week to see any results in the seizure medicine.

Taylor's appetite has been up and down. Good one day and not so good the next. Hopefully everything going on is a side effect from the Chemo.

Normal Blood Counts
WBC [4.0-12.0]
Hemoglobin [11.5-14.5]
Platelets [150,000-450,000]
Absolute Neutrophils (ANC) [1,400-6,600]


Taylor's Blood Counts were:
ANC 1700
Hemoglobin 9.7


Taylor did go to the zoo with Hannah, Eli, and Ben. They arrived at the zoo at 10am. Angi stated she thinks that every child in Memphis was at the zoo that day. She heard there was 3,000 kids there that day and the zoo was booming, wild , and crazy. Too bad Taylor missed most of it. She fell asleep at 11am and slept for three hours.

Angi has been talking about ways to occupy Taylor when she is inpatient for several days. Since Taylor really enjoys her movies and Angi doesn't feel right about spending any donations on this, I've decided to start a fund just for a portable dvd player for Taylor. I've been looking on the internet and portable dvd players are running around $200. After much debate, I decided it would be better if anyone wants to donate just for the dvd player, to send the money directly to Angi with a note stating the money is to go toward the dvd player. After keeping up with many, many, many CaringBridge sites over the years, portable dvd players seem to be the way to go to occupy children that are inpatient. Any and all donations are appreciated. Angi could also use some gift cards. She did say there was a Walgreens close by. I think they may even have gift cards.

Saturday, May 8, 2004

Please visit Cameron's web site. He's having a very rough time. He could really use our prayers and encouragement. You can follow his link above.


Wednesday May 5
I spoke with Angi today. Taylor is doing pretty well crawling in Physical Therapy. Taylor also had a test in order to check her kidney infiltation. She had to have blood drawn three times.

Yesterday (Tuesday) Taylor met with the nutritionist who stated Taylor needs more protein in her diet. The appetite stimulant seems to be helping Taylor. She is also doing well in Speech.

Taylor doesn't have anything scheduled for Thursday. Friday she will see the ENT who will check her vocal cords. If they are completely functioning, Taylor won't need the Thicken put in her drinks. There is nothing scheduled for this weekend, except maybe a trip to the zoo. On Monday, Taylor will start her next round (4th week) of chemotherapy.


Angi called today (Sunday). Taylor had a blood test and her counts were in the right range so she didn't need a platelet tranfusion. Please continue to keep John, Angi, and Taylor close to you in prayer.



Angi updated Taylor's site for us today.



April 30, 2004

Dee,
As you and everybody know Taylor started back with chemo last week. She has done so,so. She has less of an appetite and has lost a little weight, but not more than a few ounces. She still tries hard in all her activities such as PT,OT, and speech. She did get sick once in the hospital and vomited. Also while in the hospital she was experiencing either pain from the injection in here spine and was so restless and irritable that she had to be medicated with Ativan to quiet her. She came back to the apartment on Thursday the 22nd of April to still continue her routine activities and chemo the next week. She had a visit from my sister's husband John on his way to Mississippi. This was the first time he has seen her and met mom and John.

This week has been ok for her. She still doesn't have much of an appetite and they are going to give her an appetite stimulant and hope that this will help her appetite.

Her blood count has dropped alot and on Wednesday night the 28th she had to receive a blood transfusion due to her low hemoglobin that was below 8 grams,it was 7.8. She has been less active due to this and she was pale in color even her lips were not the usual pink that they should be. After the transfusion John and mom said she seemed more active and her color looked better. John called me yesterday at work and said that her platelet count had dropped so much that she was going to have a platelet transfusion this weekend. Today they are going to check her labs again and see how her counts are doing. She also had a dramatic drop in her ANC which is the actual neurophil count that tells that the chemo is working. It is at zero which it was above 500 which she does not require a mask when out in public or crowds and in the hospital. Getting a 2 1/2 year old to wear a mask is a joke! She is now more confined to the apartment so we don't risk getting an infection from anything or anyone since her count is zero. Dad and I will be leaving this evening to Memphis to spend my 2 weeks with her. I miss her so much and wish that I could just stay the entire time to help her with all her care! She seems to be talking much better and some words are very clear. She again has to receive the GSF shot to boost up her counts. This is always a situation that she fusses about and we have to hold her to give the shot. I know when I was giving the shot she would hardly even cry. She is so strong to be as young as she is and I have to praise her for all the effort she puts forth and courage that I know if I was in her shoes I don't know if I would be that way.

So I will go and call so that you can update the site since I will be gone. I think you're doing a great job with the site and thanks for creating this so we can hear from everyone and know that we are in so many people's prayers.
Angi

Today is my mom's birthday so wish her all my love and I hope that we can celebrate sometime soon when we are over this situation with Taylor.






For all our prayer warriors - Click on the link to visit Ben Bowen's web site. Ben is a 16 month old from Huntington, WV and is and battling ATRT at St. Jude's in Memphis as well. Please stop by his site and offer his family your prayers and encouragement.


Ben Bowen






Congratulations to Bob King of Glenville, West Virginia. His was the lucky name drawn in the "Pinja" giveaway.

Friday, April 23, 2004 12:24 AM CDT

John and Mimi are with Taylor in Memphis. Angi went back to work in Fairmont.

Taylor is starting the same hospital routine again with her chemotherapy.

Tuesday she received an injection in your back. After she came out from under the anesthesia, she was a wild child and had to be given ativan to calm her down.

She is crawling again in Physical Therapy. Her eye is still doing well, but she still has to wear the patch on the left eye.

Her appetite has been really good, although she did get sick on Thursday.

Angi did express concern that Taylor will start experiencing the side effects from the chemotherapy again. Please lift John, Angi and Taylor up in prayers.


Post from April 15th - There is good news to post!! Taylor had her scans done today. The tumor has not changed in size, which also means it has not grown. Also, the tumor is not as dense, so it looks like it is responding to the chemotherapy. It is also not as prominent as before. The ventricles look fine. The fluid is not blocked and it is draining. The botox injection has improved Taylor's eye. The eye is midline now. All this was good news for John's birthday. Please continue to keep John, Angi, and Taylor close to you in prayer.

-demetra




For all our prayer warriors - Click on the link to visit Ben Bowen's web site. Ben is a 16 month old from Huntington, WV and is and battling ATRT at St. Jude's in Memphis as well. Please stop by his site and offer his family your prayers and encouragement.


Ben Bowen

Friday, April 23, 2004 12:24 AM CDT

John and Mimi are with Taylor in Memphis. Angi went back to work in Fairmont.

Taylor is starting the same hospital routine again with her chemotherapy.

Tuesday she received an injection in your back. After she came out from under the anesthesia, she was a wild child and had to be given ativan to calm her down.

She is crawling again in Physical Therapy. Her eye is still doing well, but she still has to wear the patch on the left eye.

Her appetite has been really good, although she did get sick on Thursday.

Angi did express concern that Taylor will start experiencing the side effects from the chemotherapy again. Please lift John, Angi and Taylor up in prayers.


Post from April 15th - There is good news to post!! Taylor had her scans done today. The tumor has not changed in size, which also means it has not grown. Also, the tumor is not as dense, so it looks like it is responding to the chemotherapy. It is also not as prominent as before. The ventricles look fine. The fluid is not blocked and it is draining. The botox injection has improved Taylor's eye. The eye is midline now. All this was good news for John's birthday. Please continue to keep John, Angi, and Taylor close to you in prayer.



For all our prayer warriors - Click on the link to visit Ben Bowen's web site. Ben is a 16 month old from Huntington, WV and is and battling ATRT at St. Jude's in Memphis as well. Please stop by his site and offer his family your prayers and encouragement.


Ben Bowen

Thursday, April 15, 2004 4:43 PM CDT

A SPECIAL PRAYER REQUEST

Dee:

I have been keeping up with Taylor's progress on the website. I have not been able to visit the last few weeks, but I am going to try and touch base with them this week. I don't know if you or John and Angi know, but I have a child who is quite ill. His name is Caleb and he is 9. He will be having surgery on April 20th at LeBonheur Hospital which is in downtown Memphis not far from St. Jude. He has an obstruction in one of his lungs and the infection and mucous is so thick and heavy around it that they cannot determine what it is. He will have a biopsy and thoracentesis on the 20th. They hope to remove some of the infection and congestion. Once we know what the obstruction is, they will plan a second surgery by a thoracic surgeon to remove it. He has been very sick with pneumonia-type symptoms for several weeks now. The first doctors who saw him thought it was pneumonia, but he has not gotten any better in spite of all the antibiotics and steroids he has taken. Tests this past week have confirmed that there is a definite obstruction. This has made it difficult for me to get out and do as much as I normally do and I hope they don't think we have forgotten them. We are praying for them daily.

Blessings to all of you,


Mabel Restuccio

Mabel has really been a blessing to John and Angi. Mabel has taken pre-made dinners to them to help out and has been there for moral support since their arrival in Memphis.


There is good news to post!! Taylor had her scans done today. The tumor has not changed in size, which also means it has not grown. Also, the tumor is not as dense, so it looks like it is responding to the chemotherapy. It is also not as prominent as before. The ventricles look fine. The fluid is not blocked and it is draining. The botox injection has improved Taylor's eye. The eye is midline now. All this was good news for John's birthday. Please continue to keep John, Angi, and Taylor close to you in prayer.

For all our prayer warriors - Click on the link to visit Ben Bowen's web site. Ben is a 16 month old from Huntington, WV and is and battling ATRT at St. Jude's in Memphis as well. Please stop by his site and offer his family your prayers and encouragement.

Ben Bowen





Blue Circle Ranch in Bradley, WV has graciously donated a $2,000 registered paint colt. We are naming him, "Taylor's Pinja". We are going to raffle the colt and the tickets are $5.00 a piece and you do not have to be present to win. The drawing will be May 8 at the spring horse show at Blue Circle. If anyone wins the horse and cannot accept responsibility, we have several options: donating the horse to the 4-H riding program, donating the horse to a handicapped children's riding program or giving the horse to Taylor. (which happens to be my favorite!) If Taylor is given the horse, he will be taken care of and trained free of charge and kept at Blue Circle.

Please contact me if you are interested in purchasing a raffle ticket at (304) 255-5458 or 228-9000 or 877-3174. Also anyone interested, please feel free to write me at equinenut40@msn.com

Thank you all and remember all of the proceeds go to Taylor & family.

Lee Ann McGraw-Meadows

---

Tuesday, April 6, 2004 1:22 PM CDT

For all our prayer warriors - Click on the link to visit Ben Bowen's web site. Ben is a 16 month old from Huntington, WV and is and battling ATRT at St. Jude's in Memphis as well. Please stop by his site and offer his family your prayers and encouragement.

Ben's Story


Mimi and Grandad made it to Memphis okay, but not without incident. A re-tread from a Fed Ex truck hit the front of their car and delayed them. After Mimi and Grandad arrived, John left for Fairmont, WV and he arrived home safely.

This week Taylor will continue with her regular routine - chemotherapy, physical therapy, occupational therapy, and speech therapy. Next week she is not scheduled for the chemotherapy. Instead she will receive scans and be re-evaulated for any progress. The scans and evaluation are planned for Thursday the 15, which is also John's birthday. Hopefully John will have a GREAT birthday with GREAT news from the scans.

On April 12th, Taylor is scheduled to receive her botox injection to see if it helps relax her eye muscle.

Taylor also wants to know what her medications are. Angi will tell Taylor what each medication is and then Taylor will attempt to repeat the medication back to Angi. Because Taylor is finished with a particular chemotherapy medication, she no longer requires medication for constipation, which was another side effect of that chemo.

Angi has also been instructed to give Taylor foods with different tastes in order to "wake up" Taylor's taste buds. Usually Taylor will try to give the food back to someone, but when Angi gave Taylor a bite of a dill pickle potato chip, Taylor took a few bites and put the chip back into the bag instead.

The fund raiser held at Hibachi was considered a success. John and Angi would like to express their appreciation to Lee Ann McGraws-Meadows for coordinating the fund raiser and to Hibachi for their help.

Another fund raiser held in the Beckley area went well this past weekend. Angela Mullins and the Villages at Greystone received contributions for the Taylor Marie Watson Health Fund to help John and Angi with expenses.

John and Angi would also like to send their appreciation to Fairmont General Hospital, VA Medical Center, and Jim Justice. Jim Justice made it possible to get Taylor to Memphis in time to be included in the program she's in. Just one day later and Taylor would have missed the cut-off time.

John and Angi also extend a "thank you" to all the people for the donations they are sending. John and Angi are surprised at the donations they receive from people they don't even know. Please continue to keep John, Angi, and Taylor close to you in prayer.

If you get the opportunity, please check on the other children listed above who need your prayers as well. Steven has had a very rough week and came very close to losing his battle.

Please don't forget to sign the guestbook.

-demetra

Blue Circle Ranch in Bradley, WV has graciously donated a $2,000 registered paint colt. We are naming him, "Taylor's Pinja". We are going to raffle the colt and the tickets are $5.00 a piece and you do not have to be present to win. The drawing will be May 8 at the spring horse show at Blue Circle. If anyone wins the horse and cannot accept responsibility, we have several options: donating the horse to the 4-H riding program, donating the horse to a handicapped children's riding program or giving the horse to Taylor. (which happens to be my favorite!) If Taylor is given the horse, he will be taken care of and trained free of charge and kept at Blue Circle.

Please contact me if you are interested in purchasing a raffle ticket at (304) 255-5458 or 228-9000 or 877-3174. Also anyone interested, please feel free to write me at equinenut40@msn.com

Thank you all and remember all of the proceeds go to Taylor & family.

Lee Ann McGraw-Meadows

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143. Anyone who needs tickets to the elimination dinner April 10th can also call Shannon Talerico at 366-2230 or find her on 3A(or wherever she gets pulled to) on Saturdays and Sundays 7a-7p, and Mondays 3-11.

---

Friday, March 26, 2004 6:07 PM CST

Good News concerning Steven, Katelynn, and Jordan - All their MRIs came back clear! Please continue to keep them in your prayers. You can follow the links above to get more information.

Little Taylor was seen by the Occupational and Physical Therapist this past week. Taylor's right eye is worse. It is staying in the corner at her nose. The therapist suggested Taylor receive a Botox injection to see if that would relax the eye muscle. Dr. Gajjar (Taylor's main physician) agrees with the Botox injection. Taylor is still experiencing trouble with her lungs and weakness in her throat. She is scheduled to see the Speech Pathologist next week.

Dr. Gijjar also stated he feels Taylor is experiencing side effects from the chemotherapy she just finished receiving. Fortunately at this time Taylor does not need that particular chemotherapy drug. Hopefully she will no longer experience these side effects from the next chemotherapy medication.

Taylor also received a barium swallow which verified her weakened vocal cords are causing her to aspirate liquids into her lungs. Her food has to be thickened now. As far as solid foods, they are fine and Taylor's appetite has been good this past week.

Taylor's blood count is at an "OK" level right now. With her blood count where it is she is not required to wear her mask.

John and Angi took Taylor to the zoo this past week. She was thrilled with the monkies and mere cats. For everyone who is not familiar with "The Lion King", one of the main characters is a mere cat named Timone.

John also stated when the mail arrives at Target House and he says "we got mail", Taylor becomes very excited and insists on opening "her" mail by herself. She loves her mail!

John and Angi would like to extend a "thank you" to Taylor's friends, old and new, who have sent cards and gifts. They are all very appreciated.

Also, please don't forget to sign the Guestbook. The counter at the bottom of the page is going up very quickly, but there's not a lot of messages being left in the guestbook everyday. Even if you just say "Hi" or "Thinking of you", please sign in. John and Angi would like to know who is checking in on little Taylor.


Please continue to lift John, Angi, Taylor, and their families in prayer.



-demetra

Blue Circle Ranch in Bradley, WV has graciously donated a $2,000 registered paint colt. We are naming him, "Taylor's Pinja". We are going to raffle the colt and the tickets are $5.00 a piece and you do not have to be present to win. The drawing will be May 8 at the spring horse show at Blue Circle. If anyone wins the horse and cannot accept responsibility, we have several options: donating the horse to the 4-H riding program, donating the horse to a handicapped children's riding program or giving the horse to Taylor. (which happens to be my favorite!) If Taylor is given the horse, he will be taken care of and trained free of charge and kept at Blue Circle.

Please contact me if you are interested in purchasing a raffle ticket at (304) 255-5458 or 228-9000 or 877-3174. Also anyone interested, please feel free to write me at equinenut40@msn.com

Thank you all and remember all of the proceeds go to Taylor & family.

Lee Ann McGraw-Meadows

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143. Anyone who needs tickets to the elimination dinner April 10th can also call Shannon Talerico at 366-2230 or find her on 3A(or wherever she gets pulled to) on Saturdays and Sundays 7a-7p, and Mondays 3-11.

---

Saturday, March 20, 2004 4:27 PM CST

**A Note from Lee Ann McGraw-Meadows**
Blue Circle Ranch in Bradley, WV has graciously donated a $2,000 registered paint colt. We are naming him, "Taylor's Pinja". We are going to raffle the colt and the tickets are $5.00 a piece and you do not have to be present to win. The drawing will be May 8 at the spring horse show at Blue Circle. If anyone wins the horse and cannot accept responsibility, we have several options: donating the horse to the 4-H riding program, donating the horse to a handicapped children's riding program or giving the horse to Taylor. (which happens to be my favorite!) If Taylor is given the horse, he will be taken care of and trained free of charge and kept at Blue Circle.

Please contact me if you are interested in purchasing a raffle ticket at (304) 255-5458 or 228-9000 or 877-3174. Also anyone interested, please feel free to write me at equinenut40@msn.com

Thank you all and remember all of the proceeds go to Taylor & family.

Lee Ann McGraw-Meadows**

Taylor has paresis of the vocal cords which means they are weak, another side effect from the chemotherapy. She was called back into St. Judes late Friday evening to receive 1/2 pint of blood due to her hemoglobin being too low. John has arrived in Memphis safely. When little Taylor saw John, she became very excited, laughed, shook all over and wanted him to pick her up immediately. Mimi and Grandad will be leaving shortly for the drive back to Beckley, WV. Please keep everyone in your prayers.

Also, please don't forget to sign the Guestbook. The counter at the bottom of the page is going up very quickly, but there's not a lot of messages being left in the guestbook everyday. Even if you just say "Hi" or "Thinking of you", please sign in. John and Angi would like to know who is checking in on little Taylor.

The rest of the journal was written by Taylor's Great Auntie Edie. Auntie Edie and Uncle Wayne drove to Columbia, SC from Beckley, WV to pick up their daughter, Julie and then all three drove 10 hours to Memphis to see Taylor.

-Dee

A WEEKEND WITH TAYLOR
by
Edie Mullins


Cast of Characters (And some of us are true characters!)

Taylor--Our precious little girl
Mommy--Angi
Daddy--John
Mimi--Palma (Angi’s mom)
Grandad--Charlie (Angi’s dad)
Uncle Wayne--Palma’s brother
Auntie Edie--Wayne’s wife
Julie--Wayne and Edie’s Dr. daughter


Our wonderful visit with Taylor began Thursday, March 11, 2004, at 4 PM when Uncle Wayne, Julie, and I arrived at the Target House to find Charlie waiting for us. Taylor, having experienced breathing difficulties, had been taken to St. Jude’s emergency room, a few miles from the Target House which is Taylor’s home for the next several months. When we went into the hospital room, Taylor lit up, squealed, and was truly happy to see us. She was given a breathing treatment and had to be monitored for a few hours to determine whether she could return home and not be admitted for overnight observation.

Waiting was becoming increasingly difficult for Little Taylor because she was tired and hungry. She became restless, kept asking for cereal, and said “bye-bye” over and over with desperation in her voice. Uncle Wayne thought he could appease her by giving her ten new one dollar bills. He and she counted them and then she looked at him and said, “card”, with questioning in her voice. Uncle Wayne wrote “I love you” on a paper towel from the dispenser in the room and gave it to her for a “card” and she accepted her “card” for the moment. (Taylor loves opening real cards and later at home when we gave her a card with more money, she used her little fingers to poke into the corners of the envelope and tear it open piece by piece.) Little Taylor was not admitted to the hospital, but had to receive breathing treatments every four hours at home Target House.

Time had seemed to stand still while we were waiting at St. Jude, but when we arrived at the Target House, not only was Taylor hungry, her family was also hungry and we all appreciated
the local Pizza Hut for fast delivery. Taylor did eat a few bites of pizza and of course her cereal, Gerber oatmeal with bananas. Her decreased appetite, since chemo, has not deterred Mommy, Mimi, and Grandad from offering food and drink to her continually. Drinking presents a problem for Taylor because the Hickman site in her chest cannot be wet. Her paralysis on the right side of her face hinders her from drinking from a cup or glass without the “sippy seal” or a straw and there are “dribbles” sometimes. (Picture this: Your mouth is numb from dental work. Now take a drink.!) When Taylor drinks from a straw, it must be pinched to prevent her from sucking in too much liquid.

We laughed, played, ate pizza, and enjoyed Tayor, Angi, Palma, and Charlie’s company with no concern of the time. Eleven o’clock , I asked Palma what time visitors must leave and we learned ten o’clock was “get out” time. Because The Target House is fenced, gated, and secure, people must have passes or be identified to enter the grounds and must sign in and out in the lobby. Reluctantly, Uncle Wayne, Auntie Edie, and Julie signed out and went to a hotel a few blocks away.

Friday morning, we left our motel and met Taylor, Mommy, and Mimi at St. Jude for physical therapy. With the help of her therapist, Taylor practiced crawling and walking. Then she placed a triangle, a square, and a circle in the appropriate holes. She climbed a three step ladder and slid down a slide. She rolled in balls similar to the ones at a McDonald’s play area. Taylor's determination to excel in each event was evident; even though, she experiences ataxia. (Ataxia is an inability to coordinate muscle activity during voluntary movements, so that smooth movements occur. It is most often due to disorders of the cerebellum.) Her only distraction was Uncle Wayne because she wanted him to hold her between each activity. She always has been partial to the men!!! After PT, off to triage she went to have vitals taken and then to clinic to receive instructions for the next day’s events and treatments. Now she was tired and began to fuss. With Julie’s coaxing, she said,“Let’s go.”

Friday afternoon, we learned of the extreme care that is given to Taylor at home. She must have the dressing on her chest over the Hickman changed three times a week and flushed each day with heparin to keep the lines open and the blue caps cleaned. Mommy refers to the lines as Taylor’s friends and the flushing process is called “giving her friends a drink.” Changing the dressing takes about thirty minutes and Taylor lies so still and waits for Mommy to finish. Mimi said Taylor also lies still when x-rays are being taken. Along with the breathing treatments every four hours, Angi gives Taylor a GSF shot on chemo days and other days if blood results say it is needed. Medicine, given orally, seems to come all the time...colace, senna, prilosec, and seizure medicine all twice a day and milk of mag at bedtime. Taylor is beginning to rebel when it’s time for medicine, but who wouldn’t?

Saturday and Sunday are usually rest days for chemo treatments, physical therapy and occupational therapy, but there is no rest for Angi. She has unending patience with Taylor whether it’s changing a diaper or the dressing, giving an injection or a dose of medicine, offering a drink or a bite of food, teaching a new sound or a new step, putting drops in an eye or a tape in the VCR. Angi is a mother to be praised.

This Saturday, however, was not a resting one for Taylor. She was scheduled for a nasal culture at 10:30. Wayne, Julie, and I slept in and went to the Target House after her procedure. (Oh, yes, we exited the building the night before on time.) Mimi told us Taylor kept repeating ET after we left and they finally realized she was saying “Edie.” Uncle Wayne and Auntie Edie bought Taylor a 4x8 folding exercise mat so that Taylor can continue her PT at the Target House. Grandad Charlie told us he found Taylor, Mommy, and Mimi asleep on the floor on the mat during the night.

Taylor likes her video and DVD tapes. She has now become fascinated with the movie Animal House, but with only the part playing “Shout.” She keeps time with the music, raises her arms, and tries to sing. The remote is programmed to that spot in the movie and as soon as “Shout” ends, Taylor has to have it started again. We “shouted” many, many, many, many times!

Taylor missed her Daddy, but did talk to him on the phone. She probably does not understand why her mommy and daddy cannot both be there with her. She does not know that they must take turns being with her and working so that she will have a home in Fairmont, WV, waiting for her when she is well and leaves St. Jude.

Mommy and Daddy have tried to keep a list of all the gifts that have been sent to little Taylor, but Angi stated she was afraid she has missed some. She said, “I would like to thank each one personally, but now I’m concerned with caring for Taylor.” I assured her that no one was waiting for a personal thanks. All cards are kept in a decorative bag and it’s almost full. Please know that Taylor, John, and Angi do appreciate all the cards, money, and gifts and most of all the prayers and good wishes.

As our visit with Taylor was coming to an end on Saturday, Uncle Wayne, Julie, and I were becoming increasingly sad. On Friday night Taylor had not wanted us to leave Target House to go to the motel and had cried. To prevent any further sadness for her, instead of saying bye, we kissed her, said “night-night,” and left her in the loving care of Mommy, Mimi, and Grandad.

Tuesday, March 16, 2004 3:39 PM CST

I have a small update on Taylor's treatment for this week. She had chemotherapy on Monday, PT and OT on Tuesday, and on Wednesday she had an X-ray. The X-ray came back fine, but Taylor's breathing is still raspy and she is receiving breathing treatments every 4 hours. She is scheduled to receive chemotherapy today that requires her to be sedated. The doctors are going to go ahead and check her trach and vocal cords. The doctors feel there could be a possibility of paralysis in her cords causing her voice change. I haven't heard any news concerning her treatment today. The results on her nasal passage swab showed up negative on the viral. The results on the fungus are still pending. I will post additional information as I receive it.

Little Taylor's Great Auntie Edie will be updating Taylor's site in a day or so with information on her recent visit with Taylor, Angi, Grandad, and Mimi in Memphis. I do, however, have good news concerning Steven who is battling Medulloblastoma. His MRI results of his head and spine were free of Cancer cells. Steven's mom, Dee, would like to thank everyone who kept Steven in their prayers. You can follow Steven's link above.

Last Thursday, March 4, Taylor suffered a seizure. She was taken to St. Jude's by John and Mamaw Norma. Taylor had a CAT scan which showed the existing tumor, but no reason for the seizure itself, although it is possible it could be a side effect of the chemo. The tumor, about the size of a pea, is still measuring 1 CM, not 1 MM as stated in the newspaper article. The tumor does not show any change in size since it was first discovered in Morgantown. She was admitted overnight to the hospital for observation and has been taking anti-seizure medicine. She has not experienced any more seizures.

Taylor has also started to experience more side effects from the chemotherapy treatments. She is still losing her hair and is now starting to lose her eyelashes. Mimi and Angi cut her hair and now Taylor's hair looks like it did when she was 9 months old. Taylor is also suffering with thrush of the oral cavity and is taking Nyastatin for it.

She is still showing paralysis on the right side which is affecting her eye, requiring the use of lubrication since that eye does not close. She is also having to use a patch on the left eye in order to strengthen the right one. She is using small phrases when she speaks. She will also point when she realizes she is not being understood. Yesterday she said, "Let's go". Her eating has decreased although she is maintaining her weight.

Taylor is also still experiencing breathing problems although the doctors do not know what precipitated the Atelectasis, which is in her upper right lobe of the lung. She is still suffering shortness of breath, especially during exertion. Angi is still having to give Taylor breathing treatments every 4 hours.

Taylor is scheduled to have a throat culture on Saturday. The doctors want to check for a viral or bacterial infection to see if that is causing her respiratory difficulties, which also could be a side effect of the chemotherapy. Although she has not been diagnosed with anything specific, she sounds like she has Stridor, kind of a loud, raspy, croupy sound when she breathes.

Through all the commotion this past week Taylor has maintained her sense of routine. When she was in triage this Thursday, she was expecting her blood to be taken and became angry when it wasn't taken.

Because of the chemotherapy treatments, Taylor's immune system is weakened and she should be wearing a mask. Despite Mimi having been an Infection Control Nurse, she can't convince Taylor to keep her mask on. Taylor takes it off and throws it instead.

John, Angi and Taylor have been receving cards and gifts and would like to express their appreciation. Taylor loves opening her cards and each time she receives one, Angi cries.

Please continue to lift John, Angi, and little Taylor up in prayer as well as John and Angi's family as they try to help with Taylor.

Don't forget the sign the guestbook every few visits so John and Angi will know who has been checking on them.

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143. Anyone who needs tickets to the elimination dinner April 10th can also call Shannon Talerico at 366-2230 or find her on 3A(or wherever she gets pulled to) on Saturdays and Sundays 7a-7p, and Mondays 3-11.

**A Note from Lee Ann McGraw-Meadows**
Blue Circle Ranch in Bradley, WV has graciously donated a $2,000 registered paint colt. We are naming him, "Taylor's Pinja". We are going to raffle the colt and the tickets are $5.00 a piece and you do not have to be present to win. The drawing will be May 8 at the spring horse show at Blue Circle. If anyone wins the horse and cannot accept responsibility, we have several options: donating the horse to the 4-H riding program, donating the horse to a handicapped children's riding program or giving the horse to Taylor. (which happens to be my favorite!) If Taylor is given the horse, he will be taken care of and trained free of charge and kept at Blue Circle.

Please contact me if you are interested in purchasing a raffle ticket at (304) 255-5458 or 228-9000 or 877-3174. Also anyone interested, please feel free to write me at equinenut40@msn.com

Thank you all and remember all of the proceeds go to Taylor & family.

Lee Ann McGraw-Meadows**

Follow the link below to read the article of Taylor in the Sunday edition of the Beckley Register-Herald.

Taylor's interest also include (other than the Lion King) Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

Steven, Katelynn, and Jordan are all scheduled for MRIs this month. Please add an extra prayer for them that their results come back with good news. You can click on the links above to read their stories.

-Dee

Friday, March 12, 2004 9:31 PM CST

Last Thursday, March 4, Taylor suffered a seizure. She was taken to St. Jude's by John and Mamaw Norma. Taylor had a CAT scan which showed the existing tumor, but no reason for the seizure itself, although it is possible it could be a side effect of the chemo. The tumor, about the size of a pea, is still measuring 1 CM, not 1 MM as stated in the newspaper article. The tumor does not show any change in size since it was first discovered in Morgantown. She was admitted overnight to the hospital for observation and has been taking anti-seizure medicine. She has not experienced any more seizures.

Taylor has also started to experience more side effects from the chemotherapy treatments. She is still losing her hair and is now starting to lose her eyelashes. Mimi and Angi cut her hair and now Taylor's hair looks like it did when she was 9 months old. Taylor is also suffering with thrush of the oral cavity and is taking Nyastatin for it.

She is still showing paralysis on the right side which is affecting her eye, requiring the use of lubrication since that eye does not close. She is also having to use a patch on the left eye in order to strengthen the right one. She is using small phrases when she speaks. She will also point when she realizes she is not being understood. Yesterday she said, "Let's go". Her eating has decreased although she is maintaining her weight.

Taylor is also still experiencing breathing problems although the doctors do not know what precipitated the Atelectasis, which is in her upper right lobe of the lung. She is still suffering shortness of breath, especially during exertion. Angi is still having to give Taylor breathing treatments every 4 hours.

Taylor is scheduled to have a throat culture on Saturday. The doctors want to check for a viral or bacterial infection to see if that is causing her respiratory difficulties, which also could be a side effect of the chemotherapy. Although she has not been diagnosed with anything specific, she sounds like she has Stridor, kind of a loud, raspy, croupy sound when she breathes.

Through all the commotion this past week Taylor has maintained her sense of routine. When she was in triage this Thursday, she was expecting her blood to be taken and became angry when it wasn't taken.

Because of the chemotherapy treatments, Taylor's immune system is weakened and she should be wearing a mask. Despite Mimi having been an Infection Control Nurse, she can't convince Taylor to keep her mask on. Taylor takes it off and throws it instead.

John, Angi and Taylor have been receving cards and gifts and would like to express their appreciation. Taylor loves opening her cards and each time she receives one, Angi cries.

Please continue to lift John, Angi, and little Taylor up in prayer as well as John and Angi's family as they try to help with Taylor.

Don't forget the sign the guestbook every few visits so John and Angi will know who has been checking on them.

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143. Anyone who needs tickets to the elimination dinner April 10th can also call Shannon Talerico at 366-2230 or find her on 3A(or wherever she gets pulled to) on Saturdays and Sundays 7a-7p, and Mondays 3-11.

**A Note from Lee Ann McGraw-Meadows**
Blue Circle Ranch in Bradley, WV has graciously donated a $2,000 registered paint colt. We are naming him, "Taylor's Pinja". We are going to raffle the colt and the tickets are $5.00 a piece and you do not have to be present to win. The drawing will be May 8 at the spring horse show at Blue Circle. If anyone wins the horse and cannot accept responsibility, we have several options: donating the horse to the 4-H riding program, donating the horse to a handicapped children's riding program or giving the horse to Taylor. (which happens to be my favorite!) If Taylor is given the horse, he will be taken care of and trained free of charge and kept at Blue Circle.

Please contact me if you are interested in purchasing a raffle ticket at (304) 255-5458 or 228-9000 or 877-3174. Also anyone interested, please feel free to write me at equinenut40@msn.com

Thank you all and remember all of the proceeds go to Taylor & family.

Lee Ann McGraw-Meadows**

Follow the link below to read the article of Taylor in the Sunday edition of the Beckley Register-Herald.

Taylor's interest also include (other than the Lion King) Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

Steven, Katelynn, and Jordan are all scheduled for MRIs this month. Please add an extra prayer for them that their results come back with good news. You can click on the links above to read their stories.

-Dee

Thursday, March 11, 2004 10:53 AM CST

******* A Special Note *******
Blue Circle Ranch in Bradley, WV has graciously donated a $2,000 registered paint colt. We are naming him, "Taylor's Pinja". We are going to raffle the colt and the tickets are $5.00 a piece and you do not have to be present to win. The drawing will be May 8 at the spring horse show at Blue Circle. If anyone wins the horse and cannot accept responsibility, we have several options: donating the horse to the 4-H riding program, donating the horse to a handicapped children's riding program or giving the horse to Taylor. (which happens to be my favorite!) If Taylor is given the horse, he will be taken care of and trained free of charge and kept at Blue Circle.

Please contact me if you are interested in purchasing a raffle ticket at (304) 255-5458 or 228-9000 or 877-3174. Also anyone interested, please feel free to write me at equinenut40@msn.com

Thank you all and remember all of the proceeds go to Taylor & family.

Lee Ann McGraw-Meadows
*****************************

Earlier in the week Taylor's breathing became labored. She has Atelectasis which means her lungs are not expanding as much as they should be. She has been receiving medication to help her breathing as well as receiving breathing treatments every 4 hours. She is feeling a little bit better today. She is also scheduled to receive chemotherapy today.

Mamaw Norma's surgery went fine and she is recuperating.

The cards, letters, and packages are very much appreciated.

Steven, Katelynn, and Jordan are all scheduled for MRIs this month. Please add an extra prayer for them that their results come back with good news. You can click on the links above to read their stories.

Don't forget the sign the guestbook every few visits so John and Angi will know who has been checking on them.

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143. Anyone who needs tickets to the elimination dinner April 10th can also call Shannon Talerico at 366-2230 or find her on 3A(or wherever she gets pulled to) on Saturdays and Sundays 7a-7p, and Mondays 3-11.

Follow the link below to read the article of Taylor in the Sunday edition of the Beckley Register-Herald.

Taylor's interest also include (other than the Lion King) Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

-Dee

Monday, March 8, 2004 8:10 PM CST

Just a small update - Little Taylor received treatments today in both her head and her back. She was a little fussy and pale today which could be from low hemoglobin and RBC (red blood count). Mawaw Norma and John Paul made it back to West Virginia. Mawaw Norma is scheduled to have surgery on Tuesday. Please add a prayer. Also, John and Angi had to give away their two dogs this week in West Virginia. Angi had one dog for 13 years and one for 5 years. This was a very tough sacrifice for John and Angi to make so please continue to keep John, Angi, and Taylor close to you in prayer.

Anyone who needs tickets to the elimination dinner April 10th can also call Shannon Talerico at 366-2230 or find her on 3A(or wherever she gets pulled to) on Saturdays and Sundays 7a-7p, and Mondays 3-11.

Follow the link below to read the article of Taylor in the Sunday edition of the Beckley Register-Herald.

Grandad, Mimi, and Angi broke down in Wytheville, VA Friday night around 11PM. They could not get the part that was needed until this morning. They had the vehicle taken to a travel center on a flat bed truck. Grandad, Mimi, and Angi slept in the car last night, got the needed part this morning from Pulaski, VA and headed back towards Memphis at approximately 11:30. They still have about 10 hours of driving ahead of them.

Angi, Mimi, and Grandad are on their way to Memphis. They left Beckley sometime after 8:30 PM. Please continue to pray that everyone travels safely.

Little Taylor completed her treatments for this week. She received chemotherapy on Monday, Tuesday, and Wednesday. She was discharged on Thursday. Taylor has shown her first possible side effects, other than her hair, from the chemotherapy. She experienced nausea on Wednesday. Taylor pointed to phone, told John to "Call Mommy", and then proceeded to throw up while he was dialing Angi. Mamaw stayed with Taylor while John went back to Target House to wash Taylor's bedding, doll, and clothes. Taylor was given anti-nausea medication which seemed to help. She felt better on Thursday and was eating well.

Taylor is scheduled as an outpatient today. She is expected to work with the Physical and Occupational Therapists. She is also expected to receive her intrathecal chemotherapy today as well. John stated Taylor's eye/hand coordination is better and she enjoys playing with her blocks. She is also sitting up on her own and trying to crawl. She is still wanting to walk without anyone helping her. John also stated "she is in non stop motion" and her hair has stopped falling out, but she looks a "little shaggy". Mimi is planning on cutting Taylor's hair when Mimi gets back to Memphis. Taylor is speaking and using more words. She also beginning to speak in sentences again. In the past week she has said "My doll", "I love you", and "Hi, Mom". She told Angi over the phone, "I'm good girl". Taylor did not use the "a" in her sentence, but it's a great start.

John would like to express his appreciation for all the cards that have been received. Little Taylor really loves her cards and insists on opening them herself. So please keep the cards coming. Taylor is starting to look for "her mail" now. You can address the cards directly to Taylor. John would also like to extend a special "Thank You" to Shannon Talerico. Shannon sent Taylor a tote bag hand-painted with the Lion King. When Taylor saw the bag, she instantly said "Pinja" (from Pinned You Again in the movie).

Steven, Katelynn, and Jordan are all scheduled for MRIs this month. Please add an extra prayer for them that their results come back with good news. You can click on the links above to read their stories.

Don't forget the sign the guestbook every few visits so John and Angi will know who has been checking on them.

Two fundraisers have been established for little Taylor:

There will be a fundraiser for Taylor at the Hibachi Restaurant on March 10th at 7:00 pm. Hibatchi is located on Harper Road in Beckley, WV.

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143.

**Also, if anyone is planning any functions to raise money for Taylor, please let me know and I will make sure the information is posted here as well.**

Taylor's interest also include (other than the Lion King) Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

-Dee

Sunday, March 7, 2004 11:52 AM CST

Saturday, March 6, 2004 1:20 PM CST

Saturday, March 6, 2004 1:20 PM CST

Grandad, Mimi, and Angi broke down in Wytheville, VA last night around 11PM. They could not get the part that was needed until this morning. The vehicle was taken to a travel center on a flat bed truck. Grandad, Mimi, and Angi slept in the car last night, got the needed part this morning from Pulaski, VA and headed back towards Memphis at approximately 11:30. They still have about 10 hours of driving ahead of them.

Angi, Mimi, and Grandad are their way to Memphis. They left Beckley sometime after 8:30 PM. Please continue to pray that everyone travels safely.

Little Taylor completed her treatments for this week. She received chemotherapy on Monday, Tuesday, and Wednesday. She was discharged on Thursday. Taylor has shown her first possible side effects, other than her hair, from the chemotherapy. She experienced nausea on Wednesday. Taylor pointed to phone, told John to "Call Mommy", and then proceeded to throw up while he was dialing Angi. Mamaw stayed with Taylor while John went back to Target House to wash Taylor's bedding, doll, and clothes. Taylor was given anti-nausea medication which seemed to help. She felt better on Thursday and was eating well.

Taylor is scheduled as an outpatient today. She is expected to work with the Physical and Occupational Therapists. She is also expected to receive her intrathecal chemotherapy today as well. John stated Taylor's eye/hand coordination is better and she enjoys playing with her blocks. She is also sitting up on her own and trying to crawl. She is still wanting to walk without anyone helping her. John also stated "she is in non stop motion" and her hair has stopped falling out, but she looks a "little shaggy". Mimi is planning on cutting Taylor's hair when Mimi gets back to Memphis. Taylor is speaking and using more words. She also beginning to speak in sentences again. In the past week she has said "My doll", "I love you", and "Hi, Mom". She told Angi over the phone, "I'm good girl". Taylor did not use the "a" in her sentence, but it's a great start.

John would like to express his appreciation for all the cards that have been received. Little Taylor really loves her cards and insists on opening them herself. So please keep the cards coming. Taylor is starting to look for "her mail" now. You can address the cards directly to Taylor. John would also like to extend a special "Thank You" to Shannon Talerico. Shannon sent Taylor a tote bag hand-painted with the Lion King. When Taylor saw the bag, she instantly said "Pinja" (from Pinned You Again in the movie).

Steven, Katelynn, and Jordan are all scheduled for MRIs this month. Please add an extra prayer for them that their results come back with good news. You can click on the links above to read their stories.

Two fundraisers have been established for little Taylor:

There will be a fundraiser for Taylor at the Hibatchi Restaurant on March 10th at 7:00 pm. Hibatchi is located on Harper Road in Beckley, WV.

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143.

**Also, if anyone is planning any functions to raise money for Taylor, please let me know and I will make sure the information is posted here as well.**

Taylor's interest also include (other than the Lion King) Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

-Dee

Friday, March 5, 2004 7:50 AM CST

Angi, Mimi, and Charlie are their way to Memphis. They left Beckley sometime after 8:30 PM. Please continue to pray that everyone travels safely.

Little Taylor completed her treatments for this week. She received chemotherapy on Monday, Tuesday, and Wednesday. She was discharged on Thursday. Taylor has shown her first possible side effects, other than her hair, from the chemotherapy. She experienced nausea on Wednesday. Taylor pointed to phone, told John to "Call Mommy", and then proceeded to throw up while he was dialing Angi. Mamaw stayed with Taylor while John went back to Target House to wash Taylor's bedding, doll, and clothes. Taylor was given anti-nausea medication which seemed to help. She felt better on Thursday and was eating well.

Taylor is scheduled as an outpatient today. She is expected to work with the Physical and Occupational Therapists. She is also expected to receive her intrathecal chemotherapy today as well. John stated Taylor's eye/hand coordination is better and she enjoys playing with her blocks. She is also sitting up on her own and trying to crawl. She is still wanting to walk without anyone helping her. John also stated "she is in non stop motion" and her hair has stopped falling out, but she looks a "little shaggy". Mimi is planning on cutting Taylor's hair when Mimi gets back to Memphis. Taylor is speaking and using more words. She also beginning to speak in sentences again. In the past week she has said "My doll", "I love you", and "Hi, Mom". She told Angi over the phone, "I'm good girl". Taylor did not use the "a" in her sentence, but it's a great start.

John would like to express his appreciation for all the cards that have been received. Little Taylor really loves her cards and insists on opening them herself. So please keep the cards coming. Taylor is starting to look for "her mail" now. You can address the cards directly to Taylor. John would also like to extend a special "Thank You" to Shannon Talerico. Shannon sent Taylor a tote bag hand-painted with the Lion King. When Taylor saw the bag, she instantly said "Pinja" (from Pinned You Again in the movie).

Steven, Katelynn, and Jordan are all scheduled for MRIs this month. Please add an extra prayer for them that their results come back with good news. You can click on the links above to read their stories.

Two fundraisers have been established for little Taylor:

There will be a fundraiser for Taylor at the Hibatchi Restaurant on March 10th at 7:00 pm. Hibatchi is located on Harper Road in Beckley, WV.

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143.

**Also, if anyone is planning any functions to raise money for Taylor, please let me know and I will make sure the information is posted here as well.**

Taylor's interest also include (other than the Lion King) Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

-Dee

Friday, February 27, 2004 11:30 AM CST

**UPDATE**
Taylor was admitted on Sunday to begin the Chemotherapy treatments for this week. She is talking more and continues to be in a good mood. The Beckley newspaper, The Register-Herald, did an article on Taylor in yesterday's (Sunday, 2/29)edition. If you have a chance, please read Taylor's story. I will continue to update as information is received.

Little Taylor had another "easy" week. On Monday, she received chemo in her back and chest and on Thursday, she received treatment in her head. She will be re-admitted as an inpatient when a bed is available for her additional chemo that is scheduled for next week. Taylor no longer needs to have the Granulocyte Colony Stimulating Factor injections. She's been a little irritable which is most likely a side effect from the chemo.

The Physical Therapist(PT) and Occupational Therapist(OT) have been working daily with Taylor. Taylor is trying so hard to walk. She can walk with assistance. Her therapy is scheduled for thirty minutes, but Taylor doesn't want to stop and continues to work for an entire hour. She's getting stronger and is working on sitting up by herself. Her hand-eye coordination is really good. She has been putting shaped blocks into their appropriate holes. She's been doing so well with the shapes, it's not much of a challenge for her anymore. The paralysis is mostly gone, except for the right side of Taylor's face. She still has a mild case of Bell's Palsy. She has worked until the strength in her right arm and leg are the same as her left side. So far the chemo has not made Taylor ill, although she has lost somewhere between 70 -75 percent of her hair. She is wearing hats and LOVES them. Her appetite continues to be good and she eats constantly.

Daddy John and Mamaw Norma are with Taylor in Tennessee. Pappy John is not able to visit with Taylor due to his work schedule and will be going to Memphis at a later date. He does get to talk with Taylor everyday. Grandad and Mimi are back home in West Virginia while Angi is in Fairmont working. Please continue to lift them all up in prayer.

The letters, thoughts, prayers, cards, gifts, money, gift cards, phone cards, and guestbook entries are very appreciated.

Two fundraisers have been established for little Taylor:

There will be a fundraiser for Taylor at the Hibatchi Restaurant on March 10th at 7:00 pm. Hibatchi is located on Harper Road in Beckley, WV.

Angi's friend, Tina Sabak, has organized an Elimination Dinner scheduled for April 10 in Farmington, WV. Tickets are $40 per couple. There is a $1,000.00 Grand Prize. Contact Tina at 304-986-1622 or Angi at 304-363-6143.

**Also, if anyone is planning any functions to raise money for Taylor, please let me know and I will make sure the information is posted here as well.**

Taylor's interest also include (other than the Lion King) Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

Friday, February 20, 2004 11:21 AM CST

There will be a fundraiser for Taylor at the Hibatchi Restaurant on March 10th at 7:00 pm. Hibatchi is located on Harper Road in Beckley, WV.

Taylor has had a good week. She is giggling and saying more words. Today will be an "easy" day for Taylor, although she will be working with the Physical Therapist (PT) and Occupational Therapist (OT). She is now weighing 12kg (26lbs).

Plans are Norma and John Paul will arrive in Memphis tomorrow and Grandad, Mimi, and Angi will leave for West Virginia after Norma and John Paul arrive. This is the expected schedule for the next two weeks.

Please keep little Taylor, John and Angi and their families close to you in prayers.

Angi stated she has not sent "Thank You" notes out but she would like to personally thank each person and maybe some day she will get to, but right now she is concentrating on taking care of Taylor. She would like to thank family and friend for their letters, thoughts and prayers, cards, gifts, money, Walmart and phone cards. It is all very appreciated

The elimination dinner and dance at the Knights of Columbus went well. A VERY SPECIAL THANKS to Betty for organizing everything. Also, a HEARTY THANKS to the following people for lending a hand in the dinner and dance:
Nancy
Peggy
Lana
Mawmaw Norma
Chris and Shannon
GG (Taylor's paternal great grandmother)
Lela
Pearl and Maryann (friends of John and Angi from the OR)
Linda and Rick Pruitte for taking care of the money for the tips
All the sellers for the tips
Knights of Columbus


**Also, if anyone is planning any functions to raise money for Taylor, please let me know and I will make sure the information is posted here as well.**

Taylor's interest also include Scooby Doo, Tom & Jerry, Nemo, and Baby Einstein.

Monday, February 16, 2004 12:08 AM CST

Little Taylor was released from St. Jude's on Thursday. She has still been going back daily as an outpatient. She is tentatively scheduled to be re-admitted in about three weeks. Angi is giving Taylor daily injections of a Granulocyte Colony Stimulating Factor which keeps Taylor's white blood count (WBC) within the required range.

Taylor is expected to receive two forms of chemotherapy today. She is also eating well and has gained weight and is now weighing 11.9 Kg.

Angi stated she has not sent "Thank You" notes out but she would like to personally thank each person and maybe some day she will get to, but right now she is concentrating on taking care of Taylor. She would like to thank family and friend for their letters, thoughts and prayers, cards, gifts, money, Walmart and phone cards. It is all very appreciated.

Mimi and Angi bought Taylor an exersaucer this past weekend. The exersaucer plays music and has activities attached to it to entertain Taylor. She can sit in it like a walker, but it does not have wheels so it won't roll.

Here is an email from Lisa in case anyone is interested in purchasing from her. All her profits will go to little Taylor's Health Fund.

My name is Lisa McIntire, my mom works with Angi in the recovery room (Judy McCoy). I am a home interior displayer and I am selling candles in a jar for Taylor. Profit going to the Watson family.

Candles are $7.00 a piece and anyone can email me at zachhay1@aol.com or call me at (304)-287-7708. I need to have the orders by Feb. 20.

There are forms at Fairmont General Hospital, should be on every floor.

Thank you!

If you have any questions, please call.


Honeydew
Flower Shoppe
Grapefruit Splash
Baked Apple Pie
Strawberries & Cream
Pear Tart
Banana Nut Bread
Watermelon
Very Berry
Vanilla Creme

Wednesday, February 11, 2004 12:41 AM CST

Taylor is still undergoing chemotherapy treatments. She had chemo administered in her chest port on Monday and on Tuesday. On Tuesday, she also had intrathecal chemotherapy. This is where the medication is injected into the fluid-filled space between the thin layers of tissue that cover the brain and spinal cord.

Little Taylor is still comprehending words. She's been saying "Mom" and she said "Hi" on the phone to her great Aunt Dreama. Taylor is trying to slide out of her bed, convinced she can still walk. She was a little irritable on Tuesday afternoon, but who can blame her? Everyone seems exhausted and has been trying to nap when they can. Please don't forget to include Taylor's grandparents in your prayers. They need to be lifted up during this difficult time as well. Palma and Charlie are with Angi and Taylor in Tennessee at this time. It is very difficult for Grandma Norma and Grandpa John to be in West Virginia and away from Taylor. They would love to be with her in Memphis. Grandma Norma is hoping to go with John Paul when he goes back to Memphis to be with Angi and Taylor. A note or quick call to the grandparents would be appreciated.

The phone number to Taylor's room at Target House is
901-545-0403.

They will probably be in and out of the room until Thursday when Taylor is expected to be released.

Here is an email from Lisa in case anyone is interested in purchasing from her. All her profits will go to little Taylor's Health Fund.

My name is Lisa McIntire, my mom works with Angi in the recovery room (Judy McCoy). I am a home interior displayer and I am selling candles in a jar for Taylor. Profit going to the Watson family.

Candles are $7.00 a piece and anyone can email me at zachhay1@aol.com or call me at (304)-287-7708. I need to have the orders by Feb. 20.

There are forms at Fairmont General Hospital, should be on every floor.

Thank you!

If you have any questions, please call.


Honeydew
Flower Shoppe
Grapefruit Splash
Baked Apple Pie
Strawberries & Cream
Pear Tart
Banana Nut Bread
Watermelon
Very Berry
Vanilla Creme

Monday, February 9, 2004 5:00 PM CST

Little Taylor was admitted to St. Jude's on Sunday in order to begin the Chemotherapy today. She is expected to have chemo Monday, Tuesday, Wednesday, and Thursday, then begin again early next week.



"Taylor is holding up better and is in better spirits than the rest of us." - a quote from Angi.

I've also posted the phone number for John and Angi while they are at Target House.

Please continue to lift John, Angi, and Taylor in prayer.

Here is an email from Lisa in case anyone is interested in purchasing from her. All her profits will go to little Taylor's Health Fund.

My name is Lisa McIntire, my mom works with Angi in the recovery room (Judy McCoy). I am a home interior displayer and I am selling candles in a jar for Taylor. Profit going to the Watson family.

Candles are $7.00 a piece and anyone can email me at zachhay1@aol.com or call me at (304)-287-7708. I need to have the orders by Feb. 20.

There are forms at Fairmont General Hospital, should be on every floor.

Thank you!

If you have any questions, please call.

Friday, February 6, 2004 1:28 PM CST

Not a lot of information to post. The head shunt surgery went well on Friday. Taylor's appetite seems to be going strong. She needs to consume lots of calories in order to prepare her body for the upcoming chemo.

Taylor had a good day on Thursday. She watched The Lion King and giggled and smiled. She waved to the nurses yesterday as she was leaving. She also received some beautiful quilts from people involved with St. Jude's and Target House.

Taylor is scheduled to get the catheter in her head today. Chemo is expected to begin the early part of next week.

Mabel Restuccio took them some desserts, ham, turkey, and several side dishes that can heated quickly. Thank you, Mabel, for helping and supporting John, Angi, and little Taylor.

Please continue to lift John, Angi and Taylor in prayer.

John and Angi also have a mailing address now. Any mail can be addressed to either John, Angi, or Taylor Watson. Make sure you use the room number that was omitted earlier.

Taylor Watson
Target House 1
Room 403
1811 Poplar Avenue
Memphis, TN 38104

**Angi left this note in the guestbook**

To every person and family who has written to us and/or has been praying for all of us I want to say thank you. The news today was more upsetting to us then the original findings in Morgantown. I love my daughter so much that I can't imagine life without her. We were so blessed to have her and now she will have to fight for her life. It is very hard sometimes not to get upset but like I stated in the newspaper this is one of our bad days! Taylor, mommy and daddy love you with all our heart and with your strength and our prayers God will help us fight this horrible disease. We know and our families know you are a fighter and God is on our side! We love you! Mommy and Daddy

Angi Watson
memphis , tn usa - Saturday, January 31, 2004 10:49 PM CST


-Dee

Wednesday, February 4, 2004 12:35 AM CST

The Occupational Therapist will be working with little Taylor 3 times per week. The OT is very pleased with the progress Taylor has made. Taylor is still trying to speak. She is pointing to parts of her body when prompted as well as trying to scoot herself off the sofa.

Taylor is scheduled to have a cisternogram on Thursday. This test is to ensure Taylor's spinal fluid is flowing well. No word yet on when the head shunt will be inserted. There was some concern with a spot showing up on the spine on Taylor's last MRI. The Radiologist did determine the spot was a blood vessel on the spine and not a new tumor. John and Angi will be instructed this week on how to clean out Taylor's catheter. Any new information will be posted as I receive it.

John and Angi also have a mailing address now. Any mail can be addressed to either John, Angi, or Taylor Watson. Make sure you use the room number that was omitted earlier.

Taylor Watson
Target House 1
Room 403
1811 Poplar Avenue
Memphis, TN 38104

Please continue praying for little Taylor's healing, as well as John and Angi to maintain their strength and faith to help Taylor through her illness.

Also, please sign the guestbook often. Even if you don't have the words, you can show your support by leaving your name.

John and Angi will be making trips back and forth to Fairmont, WV. If you are interested in donating any frequent flier miles, it would be greatly appreciated.

**Angi left this note in the guestbook**

To every person and family who has written to us and/or has been praying for all of us I want to say thank you. The news today was more upsetting to us then the original findings in Morgantown. I love my daughter so much that I can't imagine life without her. We were so blessed to have her and now she will have to fight for her life. It is very hard sometimes not to get upset but like I stated in the newspaper this is one of our bad days! Taylor, mommy and daddy love you with all our heart and with your strength and our prayers God will help us fight this horrible disease. We know and our families know you are a fighter and God is on our side! We love you! Mommy and Daddy

Angi Watson
memphis , tn usa - Saturday, January 31, 2004 10:49 PM CST


-Dee

Tuesday, February 3, 2004 3:06 PM CST

Please take note- I left the room number off the address when I posted the information. If mailing something to John, Angi, or little Taylor, the room number must be used. If you mailed something already, it should not be a problem, but you should use the room number from now on.

Little Taylor is expected to have the Spinal Tap and head shunt inserted sometime later this week. It looks like they are going to use aggressive chemotherapy for the next 10 weeks and then re-evaluate her.

Little Taylor also had a visitor today, Mabel Restuccio. Mabel is Gerri Priest's cousin. Mabel happens to live in Memphis. Gerri Priest works with John and Angi in Fairmont, WV, and John grew up with Gerri's son, Jimmy. Mabel has graciously offered to bring John, Angi, and little Taylor meals that would only need to be re-heated. She has also offered them use of a computer for the Target House. It is comforting to know there is someone so close to John and Angi that will help them out.

Little Taylor also enjoyed her Mimi today. She sat on Mimi's lap and would squeeze Mimi's finger when asked.

Little Taylor tolerated the lumen-hickman catheter procedure well this morning. She did not have the Spinal Tap. Right now she is resting.

Little Taylor's family took her out for breakfast after the catheter was inserted. She ate scrambled eggs and applesauce. And best of all, she ate some crackers BY HERSELF!! I will post any new information that comes in.

John and Angi also have a mailing address now. Any mail can be addressed to either John, Angi, or Taylor Watson.

Taylor Watson
Target House 1
Room 403
1811 Poplar Avenue
Memphis, TN 38104

Please continue praying for little Taylor's healing, as well as John and Angi to maintain their strength and faith to help little Taylor through her illness.

Also, please sign the guestbook often. Even if you don't have the words, you can show your support by leaving your name.

John and Angi will be making trips back and forth to Fairmont, WV. If you are interested in donating any frequent flier miles, it would be greatly appreciated.

**Angi left this note in the guestbook**

To every person and family who has written to us and/or has been praying for all of us I want to say thank you. The news today was more upsetting to us then the original findings in Morgantown. I love my daughter so much that I can't imagine life without her. We were so blessed to have her and now she will have to fight for her life. It is very hard sometimes not to get upset but like I stated in the newspaper this is one of our bad days! Taylor, mommy and daddy love you with all our heart and with your strength and our prayers God will help us fight this horrible disease. We know and our families know you are a fighter and God is on our side! We love you! Mommy and Daddy

Angi Watson
memphis , tn usa - Saturday, January 31, 2004 10:49 PM CST


-Dee

Monday, February 2, 2004 10:12 PM CST

Little Taylor is scheduled to have a double lumen-hickman catheter inserted on Tuesday at 7:30 AM. She is also expected to have a spinal tap on Tuesday as well. Several therapists consulted with little Taylor today, including the occupational therapist. Information will be updated as it comes in.

Little Taylor's Mimi and Granddad (Angi's parents, Palma and Charlie) made the trip to Memphis from Beckley, WV, safely. Little Taylor was very happy to see them. She also said "Mimi" and "Granddad" while they were visiting with her.

John and Angi also have a mailing address now. Any mail can be addressed to either John, Angi, or Taylor Watson.

Taylor Watson
Target House 1
1811 Poplar Avenue
Memphis, TN 38104

Please continue praying for little Taylor's healing, as well as John and Angi to maintain their strength and faith to help little Taylor through her illness.

Also, please sign the guestbook often. Even if you don't have the words, you can show your support by leaving your name.

John and Angi will be making trips back and forth to Fairmont, WV. If you are interested in donating any frequent flier miles, it would be greatly appreciated.

**Angi left this note in the guestbook**

To every person and family who has written to us and/or has been praying for all of us I want to say thank you. The news today was more upsetting to us then the original findings in Morgantown. I love my daughter so much that I can't imagine life without her. We were so blessed to have her and now she will have to fight for her life. It is very hard sometimes not to get upset but like I stated in the newspaper this is one of our bad days! Taylor, mommy and daddy love you with all our heart and with your strength and our prayers God will help us fight this horrible disease. We know and our families know you are a fighter and God is on our side! We love you! Mommy and Daddy

Angi Watson
memphis , tn usa - Saturday, January 31, 2004 10:49 PM CST


-Dee

Saturday, January 31, 2004 5:10 PM CST

John and Angi met with the doctor today. The news is devastating.

Little Taylor has been rediagnosed with Atypical Teratoid / Rhabdoid Tumor (ATRT). There is a link below to St. Jude's web site on this type of brain tumor.

This news is like a slap in the face. We are all numb with shock and our hearts are breaking. John and Angi are trying to find out as much information on this type of tumor, but it is such a rare form of cancer, information has been hard to come by.

As of now, treatment is still scheduled to continue and little Taylor will have a catheter inserted early next week.

John and Angi need our prayers that they are able to maintain their strength and faith to help little Taylor through her illness.

Please continue praying for little Taylor's healing.

Also, please sign the guestbook often. Even if you don't have the words, you can show your support by leaving your name.

I just got off the phone with Angi and she stated little Taylor is in good spirits. Little Taylor is also moving herself around in bed and she drank through a straw today. Just goes to show how resilient children are and you can't hold a 2 year old down!

John and Angi will be making trips back and forth to Fairmont, WV. If you are interested in donating any frequent flier miles, it would be greatly appreciated.

**A note from Angi in the Guestbook**

To every person and family who has written to us and/or has been praying for all of us I want to say thank you. The news today was more upsetting to us then the original findings in Morgantown. I love my daughter so much that I can't imagine life without her. We were so blessed to have her and now she will have to fight for her life. It is very hard sometimes not to get upset but like I stated in the newspaper this is one of our bad days! Taylor, mommy and daddy love you with all our heart and with your strength and our prayers god will help us fight this horrible disease. We know and our families know you are a fighter and god is on our side! We love you! Mommy and Daddy
Angi Watson
memphis , tn usa - Saturday, January 31, 2004 10:49 PM CST


-Dee

Friday, January 30, 2004 6:08 PM CST

Click on the link below to view the article on little Taylor in the Fairmont newspaper, the Times West Virginian

Little Taylor turned from her back to her stomach as well as lifted her head up today. These are great accomplishments. She hasn't been able to do these tasks since her first surgery. She is also wanting lots of John and Angi's attention.

Little Taylor did have an MRI yesterday and a bone scan today. John and Angi are meeting with the doctor tomorrow at 10:30 AM to get the results of these tests. Little Taylor is also expected to have another Spinal Tap early next week. Of course, plans can change at any time and any changes will be posted as soon as possible.

Angi stated St. Jude's staff is friendly and helpful and St. Jude's is "awesome". No official news on when John, Angi, and little Taylor will be moving to a permanent residence. That information will also be posted ASAP.

Little Taylor's family would like to extend their warm and hearty appreciation to:

*Jim Justice of Lewisburg, WV, for chartering the private plane out of Roanoke, VA.

*Terry Miller for making all the flight transporation arrangements.

*Lee Ann McGraw Meadows for providing assistance and support to Angi and little Taylor on their flight to Memphis.

Little Taylor's family is very grateful for everyone going above and beyond in order to help them. Knowing so many people are concerned and praying for little Taylor and her family is indescribable.

As of now, John and Angi will alternate staying with little Taylor in Memphis in order to continue their jobs in WV. Until John and Angi get a permanent address please use this address:

John and Angi Watson
315 Maryland Avenue
Fairmont, WV 26554

Please continue to keep John, Angi, and little Taylor close to you in prayer.

For anyone wanting to purchase gift certificates or gift cards, here is a partial list of establishments in Memphis. A majority of these establishments also have internet sites that will enable you to purchase gift certificates and gift cards online and have them mailed directly to John and Angi.

McDonalds
Ruby Tuesday
Red Lobster
Wendys
Dennys
Dairy Queen
Pizza Hut
Subway
Sonic Drive-In
Rallys Hamburgers
Dominos Pizza
Taco Bell
Burger King
Arbys

Target
Wal-mart
K-mart
Kroger

Wednesday, January 28, 2004 7:33 PM CST

Click on the link below to view the article on little Taylor in the Fairmont newspaper, the Times West Virginian.



**UPDATE**

As of now, John, Angi, and little Taylor are staying at the Grizzly House at St. Jude's. They are expected to be there for at least 7 days, maybe even longer. On Thursday at 12:00 PM, Taylor is sceduled for an MRI. She will also have other tests on Friday. Next week is expected to be filled with paperwork as well as additional tests. After all tests are completed, an itinerary should be established with plans for little Taylor's treatment.

We are not sure where John, Angi, and little Taylor will be staying. They may move several times before they get settled into a permanent residence. They will continue moving as rooms become available.

Little Taylor's family would like to extend their warm and hearty appreciation to:

*Jim Justice of Lewisburg, WV, for chartering the private plane out of Roanoke, VA.

*Terry Miller for making all the flight transporation arrangements.

*Lee Ann McGraw Meadows for providing assistance and support to Angi and little Taylor on their flight to Memphis.

Little Taylor's family is very grateful for everyone going above and beyond in order to help them. Knowing so many people are concerned and praying for little Taylor and her family is indescribable.

As of now, John and Angi will alternate staying with little Taylor in Memphis in order to continue their jobs in WV. Until John and Angi get a permanent address please use this address:

John and Angi Watson
315 Maryland Avenue
Fairmont, WV 26554

Please continue to keep John, Angi, and little Taylor close to you in prayer.

For anyone wanting to purchase gift certificates or gift cards, here is a partial list of establishments in Memphis. A majority of these establishments also have internet sites that will enable you to purchase gift certificates and gift cards online and have them mailed directly to John and Angi.

McDonalds
Ruby Tuesday
Red Lobster
Wendys
Dennys
Dairy Queen
Pizza Hut
Subway
Sonic Drive-In
Rallys Hamburgers
Dominos Pizza
Taco Bell
Burger King
Arbys

Target
Wal-mart
K-mart
Kroger

-Dee

Wednesday, January 28, 2004 11.54 PM CST

UPDATE II

Just received word that Angi and little Taylor have arrived in Memphis and are waiting for the shuttle. John is also in Memphis, but has not made it to Angi and little Taylor yet.

UPDATE

Just received news that Angi and little Taylor are enroute to Memphis. Their plane should be landing in approximately 2 1/2 hours. Angi's parents are making the trip back to Beckley, WV, as soon as they gather their belongings from the hotel.

Please continue praying for safe trips for everyone.

Travel plans are complete. If everything goes as planned John will leave for Memphis, TN, sometime this evening. Little Taylor will be discharged from the hospital in Morgantown on Wednesday morning and her maternal grandparents, Charlie and Palma, will drive Angi and Taylor to the airport. A Leer Jet will fly Angi and Taylor to Memphis, leaving the airport sometime around 12:00 PM. Angi will be accompanied to Memphis by her good friend, Lee Ann McGraw Meadows. They are expected to arrive in Memphis at approximately 3:00 PM. A shuttle will take Angi and little Taylor to their room and Lee Ann will fly directly back home on the same jet. Little Taylor will be registering at St. Jude's on Thursday and testing will begin shortly after.

Little Taylor's family would also like to extend a "Thank You" to Jim Justice of Lewisburg, WV, for providing the flight transportation.

Please continue to keep John, Angi, and little Taylor close to you in prayer.

For anyone wanting to purchase gift certificates or gift cards, here is a partial list of establishments in Memphis. As soon as I know John and Angi's mailing address, I will post it here. A majority of these establishments also have internet sites that will enable you to purchase gift certificates and gift cards online and have them mailed directly to John and Angi.

McDonalds
Ruby Tuesday
Red Lobster
Wendys
Dennys
Dairy Queen
Pizza Hut
Subway
Sonic Drive-In
Rallys Hamburgers
Dominos Pizza
Taco Bell
Burger King
Arbys

Target
Wal-mart
K-mart
Kroger

-Dee

Monday, January 26, 2004 2:09 PM CST

Good News! - Little Taylor's motor skills are improving. Today she was stretching Playdoh as well as reaching for and pulling Mimi's (Palma, Angi's mom) glasses from her face. Little Taylor is also moving herself around in her bed more.

As of now the plans are to take little Taylor to St. Jude's Research Hospital in Memphis, TN. The travel plans are in the process of being coordinated. If all goes well, little Taylor is tentatively scheduled to fly to Memphis on Wednesday and have tests conducted at St. Jude's on Thursday. A mailing address will also be posted when plans are more definite.

Therapists are continuing to work with little Taylor. She is still trying to speak. Please continue to lift John, Angi, and little Taylor in prayer.

More information will be posted as it comes available.

Sunday January 25, 2004 12:50 PM CST

There is no new information to post at this time. Little Taylor, however, remains in a good mood. To all of us who has ever attempted to confine a 2 year old in one place, we know this news alone deserves to be posted. Please keep John, Angi, and little Taylor close to you in prayer.

As of now the plans are to take little Taylor to St. Jude's Research Hospital in Memphis, TN. The travel plans are in the process of being coordinated and are tentatively scheduled for some time this upcoming week. A mailing address will also be posted when plans are more definite.

Results from little Taylor's PET scan are in. The PET scan was negative for any new tumors. The only tumor found on the scan was the small one that is believed to have branched off from the larger one that was removed earlier. This small tumor has been there from the beginning. It is not a new tumor.

I know we all would like to do something to help so a fund has been established for Taylor, John, and Angi to cover expenses.

Taylor Marie Watson Health Fund
WesBanco Bank, Inc
301 Adams St.
Fairmont, WV 26554

A check can be deposited at any West Virginia WesBanco branch under Taylor Marie Watson Health Fund.

Other items that John and Angi will appreciate are gift cards (Walmart, KMart, etc), gas/fuel cards, and phone cards. Gift certificates for food establishments will be appreciated as well.

Other families fighting Medulloblastoma that could use your prayers as well:
Cameron
Katelynn
Steven

Don't forget to sign the guestbook.

-Dee

Friday, January 23, 2004 5:07 PM CST

Please turn on sound or speakers to listen to music.

Still no news on little Taylor's PET scan. We are all impatiently waiting for results and I will post them when I receive them. Little Taylor is feeling much better today as far as her stomach is concerned. Our prayers must have been heard because she experienced "relief" several times on Thursday evening. YEAH!!!

The physical, occupational, and speech therapists worked with little Taylor today. Although little Taylor has not spoken yet, she is entertaining everyone with lots of laughter.

There is still no official word on where little Taylor's treatment will continue so John and Angi still need our prayers for guidance in making this decision.

I know we all would like to do something to help so a fund has been established for Taylor, John, and Angi to cover expenses.

Taylor Marie Watson Health Fund
WesBanco Bank, Inc
301 Adams St.
Fairmont, WV 26554

A check can be deposited at any West Virginia WesBanco branch under Taylor Marie Watson Health Fund.

Other items that John and Angi will appreciate are gift cards (Walmart, KMart, etc), gas/fuel cards, and phone cards. Gift certificates for food establishments will be appreciated as well. I will let you know what restaurants are going to be in the area once I know where John, Angi, and Taylor are headed. I will provide the address of the medical facilty where these items can be mailed as soon as I know.

Please keep John, Angi, and little Taylor close to you in prayer.

Other families fighting Medulloblastoma that could use your prayers as well:
Cameron
Katelynn
Steven
Jacqueline
Alexander

Don't forget to sign the guestbook.

-Dee

Friday, January 23, 2004 5:07 PM CST

Still no news on little Taylor's PET scan. We are all impatiently waiting for results and I will post them when I receive them. Little Taylor is feeling much better today as far as her stomach is concerned. Our prayers must have been heard because she experienced "relief" five times on Thursday evening. YEAH!!!

Little Taylor was seen by the physical, occupational, and speech therapists today. Little Taylor is still trying to speak but hasn't yet, although she is entertaining everyone with lots of laughter.

There is still no official word on where little Taylor's treatment will be continued so John and Angi still need our prayers for guidance in making this decision.

I know we all would like to do something to help so a fund has been established for Taylor, John, and Angi to cover expenses.

Taylor Marie Watson Health Fund
WesBanco Bank, Inc
301 Adams St.
Fairmont, WV 26554

A check can be deposited at any West Virginia WesBanco branch under Taylor Marie Watson Health Fund.

Other items that John and Angi will appreciate are gift cards (Walmart, KMart, etc), gas/fuel cards, and phone cards. Gift certificates for food establishments will be appreciated as well. I will let you know what restaurants are going to be in the area once I know where John, Angi, and Taylor are headed. I will provide the address of the medical facilty where these items can be mailed as soon as I know.

Please keep John, Angi, and little Taylor close to you in prayer.

If you have a moment, please visit Cameron Boyd's web site. He is also fighting Medulloblastoma.

www.caringbridge.org/wa/cameronboyd

Don't forget to sign the guestbook.

-Dee

Thursday, January 22, 2004 7:50 AM CST

Please turn on sound or speakers to listen to music.

Little Taylor has completed her PET scan and we should get the results in today.

Little Taylor's situation really hasn't changed. She is still experiencing discomfort. After 3 abdominal X-Rays on Wednesday, changes were noted, but not much. Please continue praying that little Taylor is able to get relief.

Little Taylor's maternal Great Grandfather was able to make the difficult journey to Morgantown from Beckley, WV to visit with Taylor, John, and Angi. Little Taylor also received visitors throughout Wednesday including her paternal Great Grandmother. Her silly Great Uncle Wayne had little Taylor belly laughing with an Elmo helium balloon so she seems to be in good spirits. No official word on where little Taylor will be receiving future medical treatments. Updates will continue as I receive them.

I know we all would like to do something to help so a fund has been established for Taylor, John, and Angi to cover expenses.

Taylor Marie Watson Health Fund
WesBanco Bank, Inc
301 Adams St.
Fairmont, WV 26554

A check can be deposited at any West Virginia WesBanco branch under Taylor Marie Watson Health Fund.

Other items that John and Angi will appreciate are gift cards (Walmart, KMart, etc), gas/fuel cards, and phone cards. Gift certificates for food establishments will be appreciated as well. I will let you know what restaurants are going to be in the area once I know where John, Angi, and Taylor are headed. I will provide the address of the medical facilty where these items can be mailed as soon as I know.

Please keep John, Angi, and little Taylor close to you in prayer. Also, pray for guidance for John and Angi in deciding where to continue little Taylor's treatment.

If you have a moment, please visit Cameron Boyd's web site. He is also fighting Medulloblastoma.

www.caringbridge.org/wa/cameronboyd

New Pictures have been added. Don't forget to sign the guestbook.

-Dee

Tuesday, January 20, 2004 5:25 PM CST

Taylor's PET scan is scheduled for 8 AM Thursday. Little Taylor is uncomfortable. She is experiencing gas and pressure. Her head also hurts when she tries to potty. Please pray little Taylor is able to get some relief soon.

I know we all would like to do something to help so a fund has been established for Taylor, John, and Angi to cover expenses.

Taylor Marie Watson Health Fund
WesBanco Bank, Inc
301 Adams St.
Fairmont, WV 26554

A check can be deposited at any West Virginia WesBanco branch under Taylor Marie Watson Health Fund.

Other items that John and Angi will appreciate are gift cards (Walmart, KMart, etc), gas/fuel cards, and phone cards. Gift certificates for food establishments will be appreciated as well. I will let you know what restaurants are going to be in the area once I know where John, Angi, and Taylor are headed. I will provide the address of the medical facilty where these items can be mailed as soon as I know.

Please keep John, Angi, and little Taylor close to you in prayer. Also, pray for guidance for John and Angi in deciding where to continue little Taylor's treatment.

New Pictures have been added.

-Dee

Monday, January 19, 2004 9:29 AM CST

More good news - little Taylor's speech pathologist has stated Taylor no longer needs the Thicken (thickening agent) in her food!

Good News!! Taylor's spinal tap results came back negative. No news on the PET scan yet.

Taylor is alert and laughing. She's moving all fingers and toes. Please continue to pray for Angi and John as they decide which medical facility to admit little Taylor for further treatments.

Keep up the prayers for little Taylor. If you have a moment, please visit Cameron Boyd's web site. He is also fighting Medulloblastoma.

www.caringbridge.org/wa/cameronboyd

Also, please sign the guestbook as you visit even if you just leave your name. You would not believe how important it is for the families to know you've been thinking of them.

Monday, January 19, 2004 9:29 AM CST

Good News!! Taylor's spinal tap results came back negative. No news on the PET scan yet.

Taylor is alert and laughing. She's moving all fingers and toes. Please continue to pray for Angi and John as they decide which medical facility to admit little Taylor for further treatments.

Keep up the prayers for little Taylor. If you have a moment, please go visit Cameron Boyd's web site. He is also fighting Medulloblastoma.

www.caringbridge.org/wa/cameronboyd

Also, please sign the guestbook as you visit even if you just leave your name. You would not believe how important it is for the families to know you've been here.

Monday, January 19, 2004 9:29 AM CST

Good News!! Taylor's spinal tap results came back negative. No news on the PET scan yet.

Taylor is alert and laughing. She's moving all fingers and toes. Please continue to pray for Angi and John as they decide where little Taylor's treatments should continue.

Keep up the prayers for little Taylor. If you have a moment, please go visit Cameron Boyd's web site. He is also fighting Medulloblastoma.

www.caringbridge.org/wa/cameronboyd

Also, please sign the guestbook as you visit even if you just leave your name. You would not believe how important it is for the families to know you've been here.

Saturday, January 17, 2004 3:42 PM CST

Taylor has been moved to a private room. By moving her to a private room this allows the family to interact with her as well as hold her.

Earlier today little Taylor was laughing and squeezing fingers. Right now she is pretty sluggish and wants to sleep. Her movements also seem involuntary and not coordinated. She will have a PET scan soon on her entire body.

Updates will be posted as they are received. Please continue praying for little Taylor, John, Angi, and other family members who have traveled to Morgantown.

Dee

Friday, January 16, 2004 7:21 PM CST

Taylor is resting. There won't be any test results from the spinal tap until Monday.

Angi and John will be deciding the next step in little Taylor's care which we be determining where her treatment will continue.

Today's news was good news concerning the fluid. We all need continue to lift John, Angi, and Taylor in prayer.

Friday, January 16, 2004 12:01 AM CST

Received some good news. At this time little Taylor does not need the shunt. There was a blood clot covering the ventricle. The fluid is now draining.

She is now waiting for the spinal tap.

Please keep little Taylor and her family in your prayers.

Friday, January 16 2004 7:31 AM EST

We've been told little Taylor has Medulloblastoma. She has already had one brain surgery. Taylor is scheduled for surgery today. The doctors will be placing an internal shunt to help drain fluid. Please keep the prayers going for little Taylor as well as Angi, John, Taylor's grandparents and other family members gathering in Morgantown for the surgery. We'll keep everyone informed as news comes in.

Please sign the guestbook so Angi and John will know you've been here

Wednesday, January 14, 2004 5:16 PM CST

This page will be updated as soon as new information is received. Please sign the guestbook so Angi and John will know you've been here.

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