2003
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|May | July | August
| September | October | November | December
2002
I apologize for not getting the update on when Amy sent it over. It apparently did not publish the first time.
Mary
12/21/03
First of all, let me start my apologizing for not having an
update sooner. I know that there are many out there that check the website and
are very concerned about Taylor and we cannot thank you enough for all of your
support. We haven't been able to take Taylor upstairs at home because of her
back problems and moving her is very difficult. Unfortunately, our computer is
upstairs. Needless to say, I don't spend any time upstairs anymore. She and I
sleep downstairs now. We ordered a hospital bed for her and have turned our
living room into her bedroom! We also ordered a Hoyer lift to help
with moving her around because it has become too difficult to lift her without
hurting her back.
I hope you all had a nice Thanksgiving. Ours was ok. We have
definitely had better! A couple of weeks before Thanksgiving, Taylor was
starting to have a lot of unexplained pain, discomfort, breathing problems,
problems with too many secretions in her throat, etc. Well, the doctor, being
the wonderful optimist that he is, blamed every bit of it on tumor progression
and said that there wasn't much that we could do for her besides give her
morphine and a muscle relaxer. Well, this basically knocked her out for a week.
I will spare you all of the details and just say that she had an infection and
a wonderful doctor on-call the night before Thanksgiving prescribed a course of
antibiotics for her that helped immensely! We also stopped the morphine and
muscle relaxer and started her on Tylenol with Codeine to help with the pain.
Well, within days, we had an entirely different kid! Not completely healed
but she quit running a fever, most of her aches and pains went away, she was
able to stay awake all day, got off of the oxygen and the secretions in her
throat have almost gone away. Tumor progression, huh? Well how come it hasn't
grown? Don't even get me started! We have definitely had our share of battles
lately but thanks to a wonderful nurse practioner in DC that we consulted with,
a wonderful nurse at CHKD and wonderful hospice nurses, we are actually
addressing some issues that aren't due to tumor growth and trying to improve
her quality of life. It has been quite a battle but there are good people in
the medical profession out there that want to help and we are just going to
talk to them from now on. For those of you who aren't aware of all of the
details, suffice it to say that I'm using great restraints here to not slander
anyone! I'm trying to stay positive and focused on our goal and I continue to
pray everyday for the guidance and strength to deal with the issues that come
our way!
Taylor is not in school right now. She's not doing a whole lot
of anything these days. But, for the most part, she's comfortable and happy. We
watch a lot of movies, listen to books on tape, read and listen to music. She
also has to deal with me everyday which is not an easy task! She actually said
the other day, "I wish that for one day, you would leave me alone and just
let me watch TV!" But you know how moms are! I love her and want her to be
able to do as much as she can everyday. We try to cook, paint, color or
whatever we can think of to try and keep her mind busy. Keith and Paula are
working and still come everyday to spend time with her and let me put in a few
hours at the office. We are all trying to do whatever we can. John is
still working two jobs and is exhausted but when he's home, he's right there
helping too. Our families and friends have been amazing and we are blessed
to have such a wonderful support system.
We were able to take her out last weekend to pick out a
Christmas tree, go through McDonald's drive-thru (the things you miss!) and go
to Newport News park to see the Christmas lights. She had a nice time but I
think that it really wore her out.
Well, that's all for now. Again, I apologize for not getting
anything out sooner. I cannot tell you how much it means to know how many
people are out there praying everyday for her and we cannot thank you enough.
There are many who have dropped off presents for her or sent letters, gifts and
cards and we thank you from the bottom of our hearts. We are not able to take
her out of the house for now and it lets her know that everyone is still
thinking about her and loves her. Please continue your prayers for her comfort
and healing. Can you believe that it has been a year since this all
started. Wow! A year already. What an amazing little girl we have been blessed
with! She can still manage to laugh, find humor in all of this and give her
parents a hard time! God bless Taylor and God bless all of you! We love you and
thank you once again.
Happy Holidays!
Amy
P.S.. I'm way behind on my Thank You cards but your gifts truly
mean so much to all of us! Thank You and please don't tell Miss Manners on
me!!!
11/18/03
Hello!
Well, it's been quite a week. We finally heard some news about the MRI yesterday. This is preliminary information from CHKD. We are having her results sent to Duke as well for her neuro-oncologist to review them. Since this is something that the doctor from Duke specializes in, hopefully we'll be able to get more specific information. Basically, the neurosurgeon from CHKD told us that there is little that has changed from July. They fully expected to see more progression and spread with this scan but that is not what they saw. They also told us that the tumor has not spread down her spinal column. They had been trying to prepare us for spread in that area because she has been having so much back and leg pain. Turns out that she has a compression fracture in T8 and possibly T4. This is most likely due to the fact that she has been on the steroid and it causes your bones to weaken. There really is no treatment for it. Just try not to move it (something that we already figured out) and take medication for the pain. We are going to ask about calcium and vitamin D supplements to help with the healing. We are also going to ask for x-rays of her knee and leg to determine if there are fractures in that area that could be contributing to the pain. It feels really good to be able to address some of these issues now and not have every one of her symptoms written off as tumor progression.
Basically, what we are dealing with is stable disease. That is not typical for this type of tumor. We have to thank God for giving us the guidance and leading us to these treatments that for right now have controlled further growth. We don't know what the future holds. We still haven't seen the neurological changes that we need to see in her for the quality of her life to improve but at least we have more time to keep on trying. We continue to pray for God to give Taylor the strength to keep on dealing with the day to day issues and fighting this awful thing. Thank you for all of the special prayers that were said for her and for us. It has definitely helped because once again, they are saying that we are in uncharted waters with Taylor. She has been baffling them all along. She truly is a miracle and we are so thankful. God bless all of you.
Love,
Amy
11/14/03
Hello there!
Just wanted to let you all know that we haven't heard anything regarding the MRI yet. Everything with the anesthesia went ok yesterday. We got home around 6:15pm yesterday and had some dinner and tried to watch Survivor (one of her favorites!) until our power went out. Of course, it came back on right as Survivor was ending. I was having flashbacks to the Hurricane when we used candles for the first day!
As soon as I hear something, I will send out a note letting you know what they tell us. Please continue to keep Taylor in your prayers. This has been a rough year and it seems to be getting harder to handle day by day for her. We thank you for your continued love and support.
Love,
Amy
11/04/03
Hello!
What a busy week it has been! I didn't get a chance to send an update over the
weekend. Taylor's birthday celebration (three days worth so far!) kept us so
busy! I just wanted to send a quick note to let everyone know how she was
doing.
First of all, the surgery did not go as well as expected. It was only supposed
to take half an hour or forty-five minutes but ended up taking two hours. She
had a clot in the artery where they wanted to put her Broviac (central line) so
they had to find a new spot for it. The clot is from the last line that was in
there (the one that got infected). The surgery was very hard on her because she
had to lay flat on her back and they had to tilt the table backward a little
bit which restricted her breathing even more. Her tummy is so large from the
steroids that even sitting straight up makes it difficult for her to breath so
laying down flat and tilting back is even harder. (Ladies, remember when you
were nine months pregnant and couldn't take a deep breath or lay flat on your
back? Well, that's pretty much what it has been like for her) They had to keep
her on the vent for a little longer and when they took it out, her oxygen
saturation levels dropped so they kept her at the hospital until about 4:30 pm
to monitor her breathing. It was pretty scary taking her home. On top of
everything else, she had picked up a cold the week before so she has been
congested and unable to completely clear her throat. It was pretty hard on her
but she seems to be getting her strength back more and more every day. We also
found out today that the temporary line that they took out had an infection in
it. Even though she was not symptomatic, they are putting her on an antibiotic
to make sure that it doesn't stay in her system. That might explain why so was
so tired last week. She hasn't been sleeping as much since the old line came
out. We are going to follow up with the doctors this week and hopefully
everything will be ok.
We were able to take her trick-or-treating on Friday night and she was a beautiful
queen! I'll send some pictures as soon as I can.
We decided to change her birthday party from a sleepover to just a party
Saturday night because she was so weak and not feeling so good. She ended up
doing really well and had a great time. She got a lot of really cool presents
and had an ice-cream cake with Mark Tremonti on it! She ate the piece that had
his head on it! It looked really funny once it started to melt! Mark actually
called Taylor Friday night to check on her and wish her a Happy Halloween and a
Happy Birthday. He and his wife are so sweet and the fact that they are always
thinking of her and calling to check on her just shows how special they are.
So, if you haven't gone out and bought your Creed CD yet, go get one now! They
are writing material for a new CD so when that one comes out, get that too!
Thank you Mark and Victoria for everything!
We had a huge birthday dinner (turkey, ham, mashed potatoes, cheese potatoes,
sweet potatoes, stuffing, corn, green beans, cole slaw, cranberries, rolls,
pumpkin pie, apple cobbler, birthday cake, ice cream...are you hungry yet?)
with the family at Grandma Jean and Poppy Bill's house yesterday(Sunday) and
she enjoyed that as well. She got to spend time with her cousins Addie and
Katie and they were so cute together! Katie is only a few weeks old and Taylor
wanted her to wake up so she kept saying, "Hey there lazy girl, wake
up!" Addie turned a year old in August and is just the cutest little girl!
She and Taylor played catch with a ball! They were really sweet together!
Today, for her actual birthday, we went to lunch at CiCi's Pizza with Aunt
Karen and her friend Paul and then went to see "School of Rock". We
had a really good time! Grandma Retha and Poppy John drove up from Tennessee
today so right now she is at Daddy and Paula's house celebrating again! Thank
you to everyone who sent cards, gifts and posted birthday greetings for her! It
means so much to her. We are so blessed to have so many people who love and
care for her. She is such a special girl!
We got the date for the next MRI. It is going to be 1:00pm on Thursday,
November 13 at CHKD. As I have said before, this is the big one. This will show
us what the treatments that she has been doing for the last three-four months
have been doing. We are saying special prayers every day and still asking for
healing and the miracle that she deserves so much. I know that all of you are
praying as well and we cannot thank you enough for that. God bless all of you
and thank you again! I'll write again soon...
Love,
Amy
10/30/03
Hello!
I just wanted to send a quick note to say that Taylor will be having day surgery today(Thursday). We have to be at the hospital at 6:45am and her surgery is scheduled for 8:30am. It should only take about an hour or so. The longest part will be waiting in recovery until they release her. I'll let you know how everything goes as soon as she gets out.
I also wanted to share what Taylor decided to be for Halloween. At first she and Dad picked out a pumpkin costume but this week she changed her mind. I did some research on wheelchair costumes and found the neatest idea! She's going to be a queen and her wheelchair will be her throne! She loves the idea and is so excited. Her occupational therapist told her today that she thought that was a very fitting costume for her! She and Dad made a crown tonight complete with jewels. They also made a piece to fit on the back of her chair that looks like the back of a throne! She will look great and she is very excited! I'll send some pictures this weekend so everyone can see!
Well, that's all for now. I've got to hit the hay so we can be up early! Taylor's been cramming in pizza at the last minute because she cannot eat after midnight tonight. That's a tradition with her. We used to have to wake her up a half an hour before she was to go NPO (nothing by mouth) and let her eat right up until the last minute! She's so funny!
Thank you again for all of the prayers. God bless all of you!
Love,
Amy
10/27/03
Happy Monday!
I hope everyone had a great weekend! Taylor was pretty sleepy this weekend but I think she had a good one. We took her to see the movie "Good Boy" yesterday! It was so cute and she really liked it. Today we go to CHKD to see her Hem/Onc doctor and then meet with the general surgeons. They are having trouble drawing her labs from the temporary central line that was put it last month so they are planning day surgery for this Thursday to take it out and put a Broviac line back in. At first, they suggest putting TPA back in her line and I said "NO WAY!" No more of that stuff! If this line isn't working, let's get it out! So, that's what they are planning for this week. She should go in on Thursday and come home the same day. Thank goodness because she really wants to go trick-or-treating on Friday and on Saturday she's having a birthday party! Next Monday is her birthday! She'll be ten years old! Oh how the time flies!! She wants to do a sleepover again. Please say a little prayer for John and me to get through it! The hardest part was deciding who to invite. We narrowed the list down to ten girls and hopefully they will all be able to make it. (Did I actually just say that?) Just kidding. She's really looking forward to it and I'm sure that we'll have a ball.
I would like to take a moment to thank some people who did something very special this weekend. A good friend of ours from Richmond, JB, produced a motorcycle calendar called Customs and Cuties and had a calendar release/Poker Run Saturday with all proceeds benefiting Taylor's medical fund. It was a huge success and we had a ball! They raised about $2000.00 for Taylor. We met the most incredible people and also got to visit with all of our wonderful friends up there. JB, you are amazing and we can't thank you enough for all that you did. To everyone else who came out...thank you so much for everything! We can't wait to see you all again! You guys ROCK!
Thank you again to everyone else who has continued to support us through all of this. Please continue to remember Taylor in your prayers. She really needs them now. Thank you and God bless all of you!
Love,
Amy
10/23/03
I just wanted to send a quick update to say that Taylor started school at Langley on Tuesday with Mrs. Norman. Everything went great and she loved it! She even got math homework on the first day! I also wanted to let everyone know that we went on the field trip yesterday and it was so much fun. She really enjoyed learning about everything and seeing her classmates. The beach wheelchair was great too. It didn't steer to well but it moved great on the sand! Pictures should be coming soon! After the fieldtrip, we went back to Gloria Dei where Taylor got to sit at her desk and visit with some of the teachers and some more of the students. She didn't want to leave! This morning she will be going back to Gloria Dei for chapel, chorus, recess and lunch! She is really excited! She has a doctor's appointment and school again this afternoon so hopefully we won't wear her out too much! It's going to be a busy day! I'll write again soon...
God bless all of you!
Amy
10/20/03
Hello there!
We want to thank everyone who came out on Saturday to the skating party at Plaza Roller Rink in Hampton! It was a great time and it was so nice to see everyone! A huge thank you to the wonderful people at Plaza Roller Rink for hosting this event for Taylor. Almost $900.00 was raised for her medical fund and we are so grateful to everyone who came out and skated with us! Hopefully we will have some pictures soon so everyone can see what a great time we all had! Thank you again Nick and Jeanene and the entire family at Plaza Roller Rink! You guys rock!
Taylor will be starting back to school this week!!!!!!!!! She is really excited. She will be attending school at Langley Elementary on Tuesday, Thursday and Friday at 3:45pm. Tuesday and Thursday's classes will be an hour and a half and Friday's class will be two hours! We are so excited for her! It turns out that her homebound teacher will be Mrs. Norman who taught at Gloria Dei and was Taylor's second grade teacher! Taylor was so excited when she heard the news! She loved Mrs. Norman and is really looking forward to working with her. I will be talking with Mrs. Robinson and Mrs. Droke from Gloria Dei today to figure out what resource classes Taylor will be able to attend during the day. She will be going on a field trip with her Gloria Dei class on Wednesday to Chesapeake Lab at First Landing State Park! She is very excited about that. Part of the field trip involves going onto the beach and collecting items to take to the lab. At first we thought that Taylor would have to stay at the lab because of her wheelchair but as it turns out, they have a beach wheelchair that Taylor will be able to use! It has wider tires on it so you can push it in the sand! Taylor thought that was pretty cool!
We are in the process of setting up the MRI with CHKD. It should be in the next couple of weeks. We are all saying extra special prayers for this one. This will show us exactly what has been going on with her tumor since our last scan on July 3. I'll let you all know when we get the date.
Well, we are a little over ten months into this whole thing. My heart breaks everyday for Taylor. She has been amazing through all of this. She has lost so much of her life as she knew it. We are continuing to pray everyday for a miracle for her. We want our little girl to have her life back as she knew it. Walking, running, riding her bike and playing like any other little girl should be able to do. Please continue to remember her in your prayers. As more time goes by, it gets even harder for her to enjoy things and we want to keep her as happy and busy as we can. We are looking into ways for her to be able to get some good exercise at home and researching some assistive/adaptive technology so she can do some of the things that she used to love to do before. Like surfing the internet or playing games on the computer. We are also trying to find her a bike. We have seen some on line that look like a regular bike but they have a seat with a back and a seatbelt and they have large training wheels on it to support bigger kids. We haven't found the right one yet but we have spoken with a therapist at CHKD in Denbigh and she's checking to see if they know of any manufacturers who may have a better selection. If anyone who reads this knows of any companies that specialize in this kind of thing, please email me, I would love to see what they offer. My email address is amythorstad@cox.net
Sorry to ramble on. Thank you again for the prayers and for supporting us all through this. We don't know what we would do without all of you. God bless.
10/13/03
Hello there!
So sorry I haven't gotten this out sooner. We've been trying to stay busy so Taylor doesn't get so bored! We have been spending alot of time cooking! She loves it. We have cooked all kinds of things but her favorite things to make are cakes and brownies! Let's hope that soon steaming veggies and rice will become her favorite because Mommy has gained probably ten pounds sampling everything!
She has been feeling ok lately. She's ready to get back to school and I have the first meeting tomorrow (Tues.) with the people from Langley Elementary. I will have to enroll her as a student there to get the ball rolling. I'll keep you posted on how all of that goes.
We have a new addition here at home...a guinea pig! Taylor has agreed to be a "foster parent" and temporarily take care of one. He needs some special attention right now and Grandma knew that Taylor would be perfect for the job! His name is Manny and he likes to be held and pet. She has been a great "mom" so far! I promise pictures soon!
Last Saturday night, Daddy and Paula took Taylor to see Disney's Monsters on Ice at the Coliseum. She had a front row seat and loved the show!
I have tried a few times to email the trip pictures to Mrs. Capone but they are not going through. Last night I put together a slide show with them and will attempt to get that to her. I apologize for taking so long. The pictures are really great and the slideshow came out nice. I can't wait for everyone to see it!
Taylor has a doctor's appointment in Norfolk today so I am going to cut this short. All in all, she's doing as well as she can right now. No worse, no better. We'll take that for now. Thank you for the prayers and please continue to remember her. We thank God for all of you daily. We couldn't get through any of this without the love and support you have shown and we will be forever grateful.
Love,
Amy
9/26/03
Hello there!
I hope that everyone has recovered from Hurricane Isabel and has their power back on. We lost power on Thursday at about 10:45am and didn't get it back until Tuesday afternoon. We had a small generator that supplied power to our refrigerator and freezer so we didn't lose any food. From what I understand we had it better than most. We sustained minor damage from the winds, two trees blew over but didn't hit anything, two gable vents blew out, a section of fence and a section of our deck railing also blew over. Like I said, very minor. Keith and Paula also had some trees and limbs down but no damage to personal property. For those of you who lost personal property or sustained damage, our hearts go out to you. If we can do anything to help with the clean up, please call us. You all have been so wonderful and we would love the opportunity to do something for someone else for a change!
Taylor did great during the storm. You know, after a brain tumor, chemo, radiation, MRI's, etc., not much scares this kid anymore. She thought it was kind of cool! She is doing pretty well. She is extremely bored and cannot wait to get back to school. When she was having difficulty breathing in August, we decided to hold off on any preparations for school. After returning home from Florida, she was feeling so good that I contacted Langley Elementary to get a home-bound teacher for her. She will continue at Gloria Dei for resource classes but she needs more one-on-one for her core classes so we were directed to Langley to arrange that. She spent a week in the hospital and now the schools are closed, so our plans for her return to school have been delayed. Hopefully we will be able to have a meeting sometime next week to figure out what Langley will provide and then meet with Gloria Dei to work out a schedule for her.
Taylor has been on her "chemo cocktail" and Protocel for a little over two months now and we are happy to report that we have not seen any significant signs of progression. She is very weak from the steroid that she takes. Another awful side effect of the dreaded Decadron. But the benefit from taking it is that it helps to control any edema in the area of her tumor. She needs to continue it for now but we are hoping that within the next few months we will be able to start tapering her off of it. We will not schedule another MRI until her current treatments have time to work. Typically with the Protocel, you can start seeing results around the 3-4 month point. That means that we will probably do another MRI sometime next month. We want to give her treatments time to work before we rush into another MRI. The results will not change her treatments so we'll just wait until then. We will definitely keep you all posted as to her progress.
Thank you again for all of the special prayers and support. We cannot tell you the strength that it brings us to read your constant messages of support. There are so many of you that post every day or every other day and we all read the posts and are so encouraged by them. We have also been saying prayers for those of you who did sustain losses from this awful storm and hope that soon your lives will be close to being back to normal.
Love,
Amy
9/15/03
Happy Monday!
I thought I had better get one of these done so here goes.
Well, as you all know, we're home! Last week really threw us for a loop! Taylor is doing ok now though. Let me try and give you my understanding of what happened last week. Taylor had a Broviac port placed in her chest while she was in DC to administer her chemo and to prevent her from getting stuck with so many needles. It is a central line that goes into one of the veins in her chest. We haven't had any problems with it until about a month ago when they we're unable to draw her labs from it. It would still flush ok so we would do that once a day to keep the line clean. Well, a week ago Friday they tried once again to draw her labs and were unsuccessful so they put something called TPA in her line. This was supposed to dissolve any clot that may be on the end of the catheter. They left the TPA in the line over the weekend and during this time we were not allowed to flush it. Last Monday a nurse came to the house and tried to draw and was unsuccessful. Tuesday we went to the hospital for a chest xray to make sure that it was still in the right place. The xray showed that it was. We went to the Hem/Onc clinic and someone from IV Therapy came and tried to draw on it and couldn't so he flushed everything that had been in the line since Friday into her system. He ordered a mild solution of hydrochloric acid to put into her line (something a little stronger to try to dissolve any clot). We were told it would take about a half hour for it to come from the pharmacy so we went to the cafe to have lunch. About fifteen minutes later, Taylor started to have severe stomach pains, got very cold and have difficulty breathing. I rushed her back to the clinic and they took her into a procedure room and immediately started an IV in each foot, put her on oxygen and began monitoring all of her vital signs. She was absolutely terrified. It took a little while before she was stabilized and then it was explained to me that she obviously had some sort of infection in her line that had grown over the weekend. When her line was flushed, all of that bacteria was sent racing through her body and it caused her to go into septic shock. I had called John, Keith and Paula at the beginning because we weren't sure what was going on and I thought it would make Taylor feel better to have all of us there with her. They admitted her to the hospital and scheduled surgery the next day to have the line removed. The surgery went well but her blood counts were very low so they kept her for a few days to monitor her and make sure that she was getting everything that she needed. We came home late Friday and spent the weekend close to home. Taylor's Uncle Vicki and Aunt Dave (Taylor's inside joke!) came on Saturday to make a Thanksgiving feast for her which she thoroughly enjoyed! On Sunday we took her to Waterside and spent the day having some guacamole and tortilla chips (she loved the guacamole!) on the deck at Jillian's (while Uncle Paul and John cried because the Steelers were losing!) and then we went and had a seafood feast at Joe's Crab Shack! She had a pretty good weekend. She went back to the doctor's today and all was well. Her counts are coming back up and they were pleased with what they saw.
Thank you to everyone once again for the prayers. I know that special prayers were being said last week and we really appreciate it. Tuesday was really scary and we know that once again, God was protecting us and had all of the right people in place at the right time for this kid. It sounds strange to say that after all that she's been through that God has His hand on her and is protecting her but that is what we believe. We don't feel that God is to blame for what has happened to Taylor but He sure has taken good care of all of us throughout this. Thank you again for all that you've done and all that you continue to do. God bless all of you!
Love,
Amy
9/13/03
Taylor is home.
9-11-03
Taylor came through the surgery ok. She is still in the hospital and is doing ok, but very bored. Amy said that they are hoping that she gets to come home tomorrow. Taylor (or Amy) have not been sleeping very well. The infection is growing at a slow rate so that is the reason for it taking so long to determine what kind it is so that they can find the best medicines to fight it with. Please keep the prayers coming.
09/09/03
Taylor had a little set back today, she was having trouble with the central line, so Amy took her over to an appointment this morning to have a chest X-ray to see what was going on with the tube. While at the hospital they flushed the tube which caused the blockage to break free. Normally there is not enough bacteria to do any damage but evidentially there was a build up and it caused some trouble today with Taylor. After they tube was flushed Amy and Taylor were told they could go down and get something to eat and then go back up to the clinic, while in the cafeteria Taylor began to feel bad and started having trouble breathing. Amy rushed her back upstairs where the doctors and nurses began to work on her. Amy called for John, Keith and Paula to come to the hospital immediately. By the time they arrived (about an hour) Taylor was feeling a little better. She will undergo surgery in the morning to remove the tube and will be staying at the hospital for a few days. At 3:30 this afternoon when Amy called Taylor was in stable condition.
Just a little reminder to keep the prayers coming. One of the nurses told Amy later that there was obviously an angel in the room with Taylor today.
09/08/03
We're baaaaaack! I'm sorry I haven't gotten an update done sooner. We've just been resting up from our trip and trying to get Taylor started back to school.
First of all, I would like to thank Make-A-Wish and Give Kids the World for making one of Taylor's wishes come true! They were awesome and Give Kids the World was an unbelievable place! Taylor did ok throughout the trip but there was just too much going on. She had started some new meds before we left and they didn't agree with her. She's feeling much better now that we're home though. We were able to go to Universal Studios, Sea World, Disney's Magic Kingdom and Disney's Animal Kingdom! She was also able to participate in some of the many activities that took place at the Give Kids the World Village like horse back riding, a party for Mayor Clayton (a huge bunny) and also had a tuck-in Sunday night from Mayor Clayton! I sent some pictures along with this update so you'll have to check them out and see all that we did while we were there.
I would also like to send a huge Hello and Thank You to Mark Tremonti and his wife, Victoria for meeting with Taylor. They were so sweet! As you all know by now, we met them for dinner last Sunday at Olive Garden. They were awesome and autographed some items that Taylor (and Paula) had! When we were saying goodbye they asked about coming to the Give Kids the World village on Monday to see Taylor again. On Monday, they came by and hung out with her for several hours. When they arrived Taylor was doing a painting for them. Mark sat with her while she finished the painting and then we went for ice-cream to the ice-cream parlor that is open from 7:30am to 9:00pm! (We even went one morning at 7:30am and had ice-cream for breakfast!) They came back to our villa and Mark and Taylor played Uno! They stayed for several hours until we had to leave for dinner. We had special dinner reservations at a place called Medieval Times. It was an awesome place where you watch a show while you eat dinner with your hands! I would just like to say thank you again to both of them. They were very sweet and seemed to enjoy their time with Taylor just as much as she enjoyed it! Creed has definitely earned alot of new fans, myself and my family included!
I also wanted to say a special hello to Sara, our waitress from Hard Rock Cafe. She was such an amazing girl who took great care of us while we were there. This may sound really strange but after almost nine months of this I truly believe that God has placed certain people in our lives! We have met the most wonderful people throughout all of this and I can't think that's it's just coincidence anymore. Sara, you rock and I thank you so much for everything!
I would like to send another huge Thank You to the Liaison Officers from Ft. Monroe for their generous donation to Taylor's medical fund. My mother, Jean and my new mother-in-law, Alyce, attended a ceremony that they had while we were gone. Everyone their was so wonderful and gracious and we can't thank you enough for what you've done! Here is a link to the Casemate newspaper with a picture of the grandmothers accepting the donation! http://www-tradoc.army.mil/casemate/extras/newsclips.htm
Someone has been hard at work here in Taylor's neighborhood passing out purple ribbons for all of the mailboxes! A special purple ribbon with butterflies was placed on our mailbox and a beautiful bouquet of purple flowers was left at our doorstop. I'm not sure who was behind all of this but I would just like to say thank you! I can't drive home anymore without tears coming into my eyes! If I hit somebody's car, do you think I can use that as an excuse? Just kidding! Thank you for the support. It means so much to us and Taylor!
Well, I think I've rambled enough for now. There are always so many wonderful people to thank and I know I haven't thanked them all. To all of you that I haven't mentioned, Thank You from the bottom of our hearts! Your support, donations and love are so wonderful and you'll just never know how much it means to all of us! Most of all, thank you for the prayers and please keep them coming. We are all still asking for a miracle and know that our God is capable of giving it to Taylor. Thank you to all of you!
Love,
Amy
8/31/03
Amy just called! They are back at Give Kids the World after what she described as a wonderful evening out. Taylor was able to have dinner with Mark (from Creed) and his wife at the local Olive Garden. According to Amy the dinner lasted for over 2 hours. Taylor spent the afternoon getting a "make-over", she went into the whirlpool, had her hair done and redid her nails to say "Mark's friend". She even had a new dress and jewelry to wear. Mark signed her CD, T-shirt and autograph book and plenty of pictures were taken. They then rushed back to the compound so that she could be tucked in by "Mayor Clayton".
A special thanks to Mark and his wife for making this wish come true. (All of this took place because Keith (dad) and Paula (step-mom) met Mark in Richmond and told him about Taylor.)
Taylor and family plan to hang out at the "Give the Kids the World" compound tomorrow.
8/31/03
I received a message this afternoon from Amy. She said that yesterday they didn't do a whole lot, Taylor wasn't feeling good. They did manage to visit Ripley's Believe it or Not museum. Then they spent the rest of the time at Give Kids the World compound. Today they tried going to Disney but it was hot and very crowded. Taylor still wasn't feeling all that great so they didn't stay long. But she is excited about tonight's dinner she will be dining w/ Mark from Creed. Amy said they were all very excited.
8/29/03
I received a phone call from Amy. Here is the news for the day. Taylor was not feeling very well yesterday but managed to have an ok day. They went to the Hard Rock cafe but didn't think they would be able to stay because of the noise level. They did however find out that there was a private room and inquired about it. They were allowed to sit in that area and enjoy a quiet meal. They had their very own waitress (see the post in the Dreambook) that Amy said took WONDERFUL care of them. They also visited Universal Studio where she had a pass that allowed her to the front of what ever rides she wished. Today, thanks to Dr. Brinker @ Todds Lane Veterinary Clinic they were treated to VIP treatment at Sea World. She was allowed behind the scenes and experienced things the general public would never be able to see. Tomorrow they are planning to visit Disney. They were able to get into Give Kids the World compound today and are staying in a two bedroom suite. During the conversation I could here Taylor in the background and she sounded like she was having a GREAT time.
8/26/03
Taylor and family have arrived in Florida.
Their day started with being picked up by a Black stretch limo that
carried them to the airport where they were greeted by "Make a Wish" and
"Wal-mart" representatives. Wal-mart presented Taylor w/ a
backpack full of snacks, stuffed animals and other items for the trip. (Wal-mart is sponsoring this trip). They were seated in the first class section
of the plane. They arrived in
Hello to everyone!
After a rough start to last week, this week has started off much better. Taylor really wasn't feeling very well at the beginning of last week but after a call to 911 and a trip to CHKD ER Tuesday night, she's doing much better. She was having difficulty breathing and we weren't sure whether it was tumor-related, if it was because of the weight that she had gained pushing up her diaphragm or if she had fluid in her lungs. We assumed that all of the weight she had put on was a result of the steroid but the ER did a chest x-ray and found that she actually was having some digestion problems. I guess that's the nicest way of saying it. They suggested a remedy and starting the next day, she was feeling better. We also have increased her steroid to help control the swelling of the tumor while her meds have a chance to start doing their job. The two of those combined gave us back our happy little girl! She has felt great and been in great spirits ever since and I'm happy to report that she has been off of the oxygen since last Thursday at noon! John and I were married last Friday night and really wanted her to be able to enjoy the wedding and the reception on Saturday. She had a really good time and looked beautiful. Also, our Make-a-Wish trip is this week and we wanted her to be able to get the most out of that as well. We will be picked up by a limo on Wednesday morning and will return home the following Tuesday. She is really excited and we cannot thank the Make-a-Wish people enough. The have taken care of literally every detail. All we have to do is pack and go and have fun. These people are amazing and I cannot wait until we can give something back to them and other organizations like Ronald McDonald house who have helped us out so much along the way. We will take lots of pictures so everyone can see all of the fun things that she'll be doing. Say a little prayer that all goes well!
Thank you again to everyone! We love you and we'll see you when we get back!
Love,
Amy
p.s. If I could just say an extra special Thank You to all that helped with the wedding and worked so hard to make it absolutely perfect for John and I. You all are incredible and we're blessed to have people like you in our lives!
08/20/03
Hello!
First of all, THANK YOU to all who have left the posts on Taylor's dreambook. We have been sharing them with her and it makes her feel very good to know that she has touched so many people. We don't understand why Taylor is going through all of this but one thing is for sure, she has definitely touched a lot of lives. I always tell her that I don't know how I made it before she was born. She is an incredible little girl and has changed me and helped me to be a better person. You don't really know yourself until you are seen through the eyes of a child. Boy, they really strip it all away don't they? We thank God for Taylor everyday.
Right now she's doing ok. She is on oxygen all of the time now because of the difficulty she's having with her breathing. The doctor has asked us to move up the trip to Florida so she can enjoy it as much as possible without having to take a lot of medical equipment. Paula has been coordinating with the wonderful people from Make-a-Wish and they set it up for next week. We will leave on Wednesday and come back the following Tuesday. Daddy is going to call Mark Tremonti today and see if he will be in town and would be able to meet Taylor. Keep your fingers crossed!
We have taken some time off from school to let Taylor get some rest. The poor kid has been going strong all summer and she deserves a little bit of a summer break! We will pick up where we left off when she's feeling better.
That's all for now. We would like to say thank you again for the kind messages and prayers. We have been so touched by the outpouring of love and kindness from people that don't even know us. We feel that it's just another way that God is helping us get through all of this. God bless all of you and thank you again.
Love,
Amy
08/13/03
Hello!
I just wanted to send a quick update. Taylor is doing ok. She's having a little trouble with her breathing because of the steroids she's taking and all of the weight they have caused her to put on. The steroid causes her body to retain fluid mostly in her face and abdomen and it really puts pressure on her diaphragm making it difficult to take good deep breaths. She's having some pain in her back and legs still and will be seeing the doctors on Thursday and they will decide what to do for that. Mentally she's still feeling well. She did arts and crafts and ate pizza and salad tonight with her Aunt Karen and good friend Leigha. They also made little dessert tarts with pudding, whipped cream, chocolate chips, chocolate syrup, sprinkles, gummi worms, Oreo cookies, etc...you get the picture! They had a lot of fun making them.
Taylor's Uncle Randy (Keith's brother), Aunt Gail and cousin Katie came to visit from Ohio this weekend. They stayed very busy playing games, baking cookies and even played on Daddy's 4-wheeler today! Something else very exciting happened this weekend! Taylor signed her name with her right hand! That was quite an accomplishment because she hasn't had much feeling or use of that hand for quite a while. We were so proud of her!
We met with the people for Make-a-Wish and they are setting up a trip for us in September to go to Florida. They were so wonderful and we had a great time talking things over with them!
Thank you to the Daily Press for running their story. I would like to take just a moment to clear up something though. Taylor's tumor is very aggressive and tumors of this type have been known to double in size every three to four weeks but Taylor's has not done this so far. We really don't know how fast it's growing but it's not that fast. Thank you to the hundreds of people who read about Taylor and posted their heartfelt messages. I wish I could respond personally to each and everyone of you to thank you for your kind words and your prayers. I would like to say Thank You from Taylor and all of her family. You don't know how much it means to us. Please continue to remember her in your prayers!
Love,
Amy
08/05/03
Hello!
I apologize for not sending an update sooner. We have been very busy! Taylor has been feeling wonderful! She has been in the best of moods lately. It has been great! She started her treatments about a week and a half ago. So far she has not had any side effects from them.
She has still been working very hard on her homework. It's truly amazing to watch her. A little over a week ago, we took her to Busch Gardens for a few hours and she had a good time. She rode Escape from Pompeii three times in a row! We ate dinner in the Festhaus and she devoured a piece of chocolate torte! She's not allowed to ride the roller coasters but we still had a good time and can't wait to go back.
She had to go back to CHKD for a minor surgery Tuesday. The stitches that they used to seal her eye and help it heal came out last week so they had to put them back in to protect her new cornea. She came through it just fine. When she was done at the hospital, she went to her Dad's house for a big surprise that was lined up for 12:00 p.m. Mark Tremonti from the band Creed called her! He had arranged to get Dad's number and called him yesterday to set it up. She was absolutely thrilled! Paula said that when she got off of the phone she high-fived her with both hands! (Quite a feat because that right arm doesn't work so well right now!) I don't know if Mark will read this or not but I wanted everyone to know just how wonderful it was for him to do this and just how special it was for her. Thank you very much! You've earned yourself another fan!
Yesterday was also a special day for Taylor because she got a new dog! His name is Keller and he's five years old. Hopefully we can get some pix soon so everyone can see them together!
As always, thank you for your continued love, support and most of all your prayers. You'll never know just how much they mean to us. They are such a source of strength. We have met so many wonderful people who have touched our lives and I don't think any of us will ever be the same. Thank you again. We love you and God bless!
Love,
Amy
Well, we're back from Duke. We drove down yesterday morning. Taylor worked on her homework the whole way down and the whole way back! She cannot write with her right hand anymore so she has been doing all of her work with her left hand. She's incredible! It was a very nice drive and Duke is absolutely beautiful! The people were very nice. We met with Dr. G (his name is too hard to spell and pronounce so everyone just calls him Dr. G.) Anyway, he showed us the difference between the MRI's that she had on March 24 and July 2. It showed that the tumor had grown quite a bit. He gave us a few options for treatments but just like in DC they were Phase I or Phase I/II treatments. What we have learned from our time in DC is that these types of treatments are basically just experiments to determine dosage and toxicity with little benefit to the person participating. We decided against spending more time away from home for treatments. We are going to begin a treatment that can be administered here at home. We learned about it from other parents who have gone through similar situations. Dr. G was willing to prescribe the meds without her being part of an actual study. She will begin as soon as the meds arrive. It is a "cocktail" of Cytoxan, VP-16, Thalomid and Celebrex. The Cytoxan and VP-16 are chemo drugs and will be alternated during a 21-28 day cycle. The purpose of this "cocktail" is to prevent new blood vessels from forming that allow the tumor to grow. Theoretically, once the blood supply has been cut off the tumor will die. Sounds great but we are talking about billions of blood vessels inside this darn thing. As with all other medications, they take time to begin working so we are just going to try them and keep praying. We are also going to begin an alternative treatment that we have been researching called Protocel. We spoke with the doctor about using this in conjunction with the others meds and he said that it would be fine to try it. Please continue to pray for Taylor. She wants to get better and she deserves to get better. This kid has been through too much in the last seven months. The side effects from this new treatment are minimal so we figured it was the best way to go. She gets to stay home and it won't make her any sicker.
I hope that explains everything well enough. Thank you all for your concern, your love, your support and most of all your prayers. We love you all and appreciate everything that has been done to help us through this. You will never know how much it has meant to us.
Love,
Amy
7/21/03
We want to thank everyone who helped make the Poker Run such a huge success! So many people were there to support Taylor and her family and we will be forever grateful for that. A special thank you to AC White, Carrie, Kenny, Lisa and family for their hard work! We love you and can't thank you enough! Taylor was able to attend and she had a good time! She ate lunch at Hooter's (that was a first!) and three desserts at Yorktown Pub! She enjoyed seeing all of the bikes and listening to the music! It was a good time for everyone who attended! Thank you again!
We will be leaving for Duke tomorrow morning. We are not sure how long we will be staying. We have a 1:00 appointment for an evaluation and then we'll decide what we're going to do. We will keep you posted.
Please continue to remember Taylor in your prayers. The last seven months have really taken their toll on her and her spirits are very low. We are rallying around her and doing everything that we can to make her more comfortable. She's such a special girl and we just want her to be happy.
Thank you again for your continued support and prayers!
God bless all of you,
Amy
7/19/03
Taylor was able to come home this evening. When I talked to Amy earlier she said Taylor was resting. All seemed to have gone well. Taylor is hoping to be at the Poker Run tomorrow but it will all depend on how she if feeling. Hope to see you all there.
7/18/03
I spoke with Amy this morning
and Taylor came through the operation just fine. They are not going to
let her come home today the Dr.'s have told them it will be Monday. But
Taylor really wants to be at the Poker Run on Sunday so they are going to speak
w/ the doctors to see what can be done. The reason for the hospital stay
is keep an eye on her and watch for any possible infection. Please keep
the prayers coming and we hope to see you Sunday at the Poker Run (even if you
don't ride a motorcycle come out and join in the fun).
7/18/03
I understand from someone that spoke Amy briefly that Taylor was scheduled for surgery this morning (Friday) and if all went well she would be home later in the day.
7/17/03
I received a phone call earlier this evening about Taylor. The cornea on her left eye ruptured sometime this afternoon and she has been re-admitted to the Children's Hospital of the Kings Daughter. The hospital was hoping to locate cornea so that they could perform surgery to replace hers. We have not received any other information on her condition. Please continue to keep her and her family in your prayers.
7/17/03
Hello!
We have been in contact with Duke this week and Taylor's medical records have
been forwarded to them. We have an appointment to meet with the doctors on
Tuesday at 1:00. I imagine we will leave on Monday and head down there. It's
about a four hour drive so it shouldn't be too bad.
I would like to thank everyone that attended the prayer and healing service
that we had on Tuesday night for Taylor. I'm sorry that I sent the wrong
address for the church. I was having a rough day on Tuesday and I am not sure
where my head was! But it was a wonderful service and I think it touched all
who attended. We are still asking for a miracle for Taylor and we would like to
ask everyone to please continue their prayers as well.
We are really looking forward to the Poker Run on Sunday and we can't believe
all of the hard work that AC White has done to organize this benefit. Thank you
AC! We hope to have a great turnout and cannot wait to see everyone!
Taylor has been feeling ok this week. She is still having some pain in her
right leg and the doctors are going to prescribe something a little stronger
for her today in hopes of relieving it. She has her first aquatic therapy today
at the pool in Norfolk and she is really looking forward to it. She loves to
swim and it should be great exercise for her!
Thank you again to everyone for their wonderful support. Everyday we receive
calls from friends and family who want to help. We appreciate it so much. The
only thing that we need right now are prayers. Prayers for healing and prayers
for Taylor to feel better. That is what is important right now. So, thank you
again and God bless.
Love,
Amy
7/15/03
I need to apologize for the wrong information that I posted earlier today. The address to the church that I was given by the family was incorrect. I am sorry for any inconvenience this may have caused anyone.
7/12/03
Hello everyone!
The website is back up again! Yeah! We have really missed your messages! Let me catch you up on what has been going on. We got back from DC at the end of May. Since we have been home, Taylor has started her physical therapy and is working with a tutor at Gloria Dei to catch up on her schoolwork. When we first came home she wasn't feeling very well because of all of the treatments that she received in DC. After about two weeks, she seemed to start feeling a little better but that was short lived. About three weeks ago, we started to notice a decline in her motor skills and she was complaining of headaches and nausea. We went back to DC for her first follow up MRI on July 2 and met with the doctors on July 3 to discuss the findings. They told us that the tumor was still there and had gotten a little larger. They offered us another clinical trial with a new medication but we would have to travel to DC twice a week to be a part of the study. We decided that this was not the best option for Taylor because it was another Phase I study and did not have any proven results yet. We started to do some research on other treatment options and have spoken with Dr. Friedman at Duke Cancer Center in Durham, NC. Taylor's doctor will speak with a doctor at Duke on Monday about what our options are. I imagine we will be going to NC this week. They have an awesome Brain Tumor program and their motto is, "At Duke, there is hope!" 60 Minutes ran a special on their clinic last year and it was amazing. You can find the clip at:
Right now we are keeping pretty busy. The doctors in DC started Taylor back on the steroid, Decadron, to help with some of the swelling and it has made her feel a whole lot better. She has some minor complaints of pain but for the most part she is trying to enjoy her time with her friends and family. She has been through so much in the last eight months. We would like to ask that you continue your prayers for her healing. She really needs them right now. God bless all of you and thank you for all of the wonderful support. We are so blessed to have so many wonderful people in our lives.
Love,
Amy
7/11/03
Sorry
for the delay in getting the website back up and running. With the site
getting so many visitors I was having a hard time finding a company that would
host it. Hopefully we will not have any more problems with it. I
will contact Amy and ask her to write up a new update. Please remember to
keep
I talked to Amy yesterday and they have had a delay in their return home. Monday when they were on the way back to to D.C. they had a little car accident in front of the D.Q. on route 17. Everyone is ok but there was a good bit of damage to the family van. The plan was for them to leave for D.C. yesterday afternoon. Taylor is not having the chemo but does have to finish the last two treatments of radiation. The new plan is for them to come home on Thursday night for good. We will just have to wait and see. She did say Taylor was doing really well and looking forward to being home for good.
5/25/03
Well, we're home again for the weekend! We got home Friday night after fighting the weekend traffic leaving D.C.! It took almost six hours to drive 180 miles! Not a whole lot of fun! We're home until Monday then back to D.C. for two more days of treatments then we'll come home Wednesday night for good!
Taylor's blood counts for her liver were still too high to do chemo last week so she had radiation only all week. The levels are dropping and should be fine by Tuesday. She is doing ok and is ready for the treatments to end. We scheduled an MRI for July 2 and then we'll meet with the doctors on July 3 to discuss the results. The doctor said that hopefully he would have good news for us. That MRI will show us what the tumor looks like. Or as we like to think, it will show us where the tumor was and it will be all gone. That is what we pray for. This kid has really been through it the last ten and a half weeks. She has been a real trooper but I think her patience is wearing thin. She wants her "normal" life back. She's tired of being dependant on us for everything. She's always been very independent and wanted to do things for herself so I know this has been very hard for her. The doctors want her to start physical therapy again and feel that once the radiation stops, the real healing will begin and her body will start to do the things that it used to. The area they treat is right on the brain stem which is responsible for controlling her movement and motor skills. They call it the "transport area" or the area that is responsible for sending the messages to tell her body how to move. Right now the signals just aren't being sent properly so her coordination and balance are affected. So, please keep praying for complete healing!
That's all for now. We're getting ready to make a big breakfast! She's excited about that so I better run! As always, thank you for not forgetting about Taylor and continuing to remember her in your prayers. You'll never know how much it means to us!
5/20/03
Our weekend was
wonderful! A big thank you to Gloria Dei and CHKD for such a warm welcome! It
was so nice to see everyone! Taylor had a really great time! The kids at school
have grown so much! Friday was our visiting day but the rest of our weekend was
spent just hanging out and getting some rest! Our dogs were so happy to see
Taylor on Thursday night. When we got up Friday I think they had forgotten that
we had come home or just couldn't believe that we had actually stayed and they
were excited all over again! We came back to DC on Sunday afternoon. It was
tough to leave but knowing that we only had a week and a half to go made it
easier!
Monday morning came and they did blood work again. Her blood counts are back up
but her liver is still slightly enlarged. They said the level had dropped in
half from Thursday but was still too high to do chemo. They did want us to do
the radiation though. Since we had a few hours before NIH, we went to follow up
with the Neurosurgeon. (Trying to get all of the visits in now so there are no
hold ups next week for coming home!) He was thrilled with what he saw!
Actually, everyone has been saying how well she looks and how well she's doing!
The weekend was exactly what she needed! It did her a world of good, physically
and mentally! They just drew blood again this morning and we are waiting on the
results. If the level is still too high, then we'll go on to radiation without
the chemo again. If it has come down then we'll do both. They told us yesterday
that she will not make up the missed chemo days. Only the radiation days that
are missed. So, we have to stay into next week to make up for last Thursday and
Friday but we won't have to make up the missed chemo from yesterday. Is that
confusing enough?
Well, I think that's all for now! It was wonderful seeing so many people. I
just cried at the school and the kids thought I was nuts! I said, "These
are happy tears! Doesn't your mother cry at really weird stuff
sometimes?". They all said yes! To those of you that we didn't get to see,
I can't wait until we're home for good and we get to see you! We miss
everyone and want to say thank you again for everything! The posts, the cards,
the contributions and most of all, the prayers! Thank you - Thank you!
Love,
Amy
p.s. Just wanted to say sorry to the wonderful people from Rehab (Lorria,
Janice, Trish and Monique) who didn't get a proper goodbye on Friday because
Taylor was trying to track down Shannon, the teachers, etc.! You are not
chopped liver! We love you and will be back to visit! See you soon!
5/15/03
Taylor and her family are coming home for the weekend!!!!!
After her treatments today they were told that Taylor's blood count was low and her liver was slightly enlarged (kind of normal for the treatments she has been having.) So they have giving her a break in treatment. The flip side to this is that it delays her treatment 2 days so instead of coming home next Friday they will have to stay til the middle of the following week.
Please remember that Taylor needs her rest while at home but Amy has said people are welcome to call.
5/15/03
Hello there!
It's been a pretty good week. We are all excited! We saw the doctors today and
they are very pleased with Taylor's progress. They said that the real healing will
begin once she is done with the radiation and the swelling in that area goes
down. I'm sure that we will pick back up with therapies again once we are home.
Taylor still has her "mood swings" that can be pretty fierce at times
but Dad and I try to be patient and understand that there's a lot going on in
her little head that we can't see and it has to affect her. It can be difficult
because it's not a behavior issue right now. Just rotten side effects from the
chemo and radiation. But, like I tell Taylor, when we're all done with this,
we'll have so much patience we'll be able to bottle and sell it! Anybody want
to buy some?
We were able to go to the zoo yesterday. It was a beautiful day and we stayed
for several hours. We even caught a glimpse of one of the Giant Pandas! Taylor
enjoyed some of it but at times it was difficult because a lot of people stared
because she's in a wheelchair and looks a little different now. We have tried
to explain that they don't mean to be mean, they are just curious to know what
happened to such a pretty little girl. We told her that she could try to just
smile and give a little wave to let them know that she's aware that they are
staring at her but that's easier said than done. It puts a lot of extra
pressure on her because it makes her feel like she's "weird or
something" (her words). I'm not sure how else to handle it. But like
everything else, we'll get through it!
Well, that's all for now! Gotta go and check on Taylor. She's in the Infusion
room with Grandma Jean playing Nintendo and that I gotta see! Take care! We
love and miss you all!
Love,
Amy
ps. I was wondering if anyone had any questions about Taylor that I could try
to answer. I know that everyone is concerned with her treatments and progress
and I'm not sure if I've covered everything in enough detail or not. If you are
curious about anything, go ahead and ask and I'll try my best to find out the
answers. Thank you for caring about her! It makes us feel so good to know that
she has alot of love and support! We couldn't have done this without all of
you!
5/14/03
Hello everybody!
Eight days of treatment left (counting today)! Yahoo!!! Taylor seems to be
feeling better. She's very excited about coming home. Her shunt seems to be
working just fine. Thank God! I don't think she could bear another hospital
stay right now. Please continue to pray for her. It is what has sustained all
of us through this and we are thankful to all of you for continuing to remember
her.
As I write this, Taylor is in the Infusion Room with Daddy playing Nintendo!
They have to monitor her blood pressure for an hour before she gets the chemo,
then they give her the Carboplatin and Cereport, then monitor her blood
pressure for another hour. Then off to NIH we go! It's a beautiful day up here
so we may try to go to the zoo after we leave NIH. On a good day we finish up
at about 2:15-2:30.
Well, I just wanted to send off a quick note to let you know that she's feeling
good and can't wait to get home. We're not sure about the plans for a Welcome
Home party yet but I'll keep you posted. We're going to try and leave next
Friday after NIH and Taylor wants to have a party Saturday but I'm not sure
that I will be capable of pulling that off so we'll just wait and see! Thank
you again to everyone for the love, support and prayers!
Love,
Amy
5/11/03
Two weeks left!!! We are getting very
excited about coming home! We miss everyone so much and miss sleeping in our
own beds! I tell you, the things we take for granted!
Everything is going pretty good. Last week went well with the anesthesia. She
decided to have it each day and it seemed to ease some of the stress for her so
that was good. It made the day a little longer but it was worth it. Taylor is
doing ok. She has had a cold for the last week but it seems to be clearing up
some now. We met with the doctors on Thursday for a weekly visit and got some
great news from the nurse practitioner! She told Taylor about a little boy who
has the same type of tumor that she has who went through the same clinical
trial. When he first came in here, he couldn't walk or talk. He finished his
treatments a few months ago and was in on Thursday for a check up and was
running through the office! It was so wonderful to hear that!
We haven't been able to get out and do too much because of the weather. Last
Wednesday night we went to see the movie "Holes" with two people from
Ronald McDonald House that we met. They were leaving to go home on Thursday.
Their names are James (12 years old) and his mother, Merlyn. They had been at
RMH since we got there and they were wonderful. We miss them so much. Saturday
we drove to Middleburg, VA for an event that was put on by some people from
Children's Hospital. It was held at a beautiful kennel out in the country. It
rained the whole time we were there but we tried to have fun anyway. There were
animals, games, prizes, music and food. We met a llama with a purple hat whose
name was "Miracle"! She was so sweet and gave Taylor kisses!
Well, I guess that's all for now. We love and miss everyone so much! I hope all
of you are doing well and we can't wait to see you! Thank you again for
everything!
Love,
Amy
5/6/03
Hello everyone!
You know by now that Taylor got out of the hospital on Saturday. She was so
happy and sang "On the road again" all the way to Ronald McDonald
house! She had a pretty good weekend. We watched a lot of movies and just
"chilled out"!
She started treatments again on Monday. Chemotherapy went ok but when we got to
NIH for radiation, she said no way, she wasn't going to do it that day! There
is a wonderful doctor named Dr. Altemus who is in charge of the program at NIH
and she talked to Taylor and said that she completely understood and it was ok
to take a day off. She told Taylor that she was very brave to have gone through
everything already and we'll just pick it back up the next day! She had us talk
to someone from Anesthesia and Taylor has the option today of being sedated for
radiation if she wants. The treatments themselves are usually only about 15 minutes
but every other day they have to take new x-rays to make sure that they are
targeting the right area and that usually lasts about 15-30 minutes. This whole
time Taylor is lying on a table in a big room by herself. She has to wear a
mask that is really tight and covers her face and the sides of her head.
It is very uncomfortable and they bolt it to the table to hold her head still
and use it to line up the machine properly. It's awful to see her lying there
like that and she has been so brave so far. We get to put a CD in for her and
she always chooses Creed! There is a monitor outside of the room that we use to
watch her and if she needs anything, all she has to do is raise her hand.
Sometimes we can walk in there in between films and talk to her but usually
it's just the radiation therapists changing the films and repositioning
everything every few minutes. So, that's radiation! Not a whole lot of fun!
Looks like we still have a few more weeks up here. We'll finish this week up
and then we have about two more. We're hanging in there but we miss everyone so
much. I read all of the new messages today and just cried and cried! Happy
tears though! Thank you to everyone who visits this site and to those of you
who leave the messages. I know that they are for Taylor but we all read them
and they give us such strength! It makes us feel like we're not in this alone
and that so many people are so faithful and still praying for her. Thank you
again. You are all very special people and we thank God for you everyday! We
love and miss you all! Take care and please keep praying!
Love,
Amy
5/5/03
Taylor was released from the hospital yesterday and was doing well. Mom is supposed to be sending an updated email soon.
5/3/03
Taylor had surgery to put in the new shunt. Everything went fine, Taylor is just really sore from the procedure. They are hoping to be able to move back to the RMH Saturday or Sunday pending on how the day goes. Amy and Keith did find out that Taylor will need to make up the 5 missed days of treatment so they will be in DC a week longer than expected. Taylor will not have another MRI until 4 to 6 weeks after treatment is completed. This is because the radiation causes the brain to swell and because of the swelling they wont be able to see the tumor, so they need to allow time for the swelling to go down.
4/28/03
Well, here's the latest. Treatment is still going fine. She's really worn out
by the evenings and this weekend she slept a lot. John and Paula came up this
weekend and she really enjoyed having all of her parents here!
The plan for this week is to put the shunt in on Friday. We will need to stay
until Sunday and then we get to go back to the Ronald McDonald House. Daddy
made a countdown poster for her that she can "X" off every day until
Sunday. Then we'll make another countdown poster for the day when we can come
home!! Next Monday we will begin her sixth week of treatment. After that we
have three more days of radiation with no chemo and then hopefully we'll come
home. We have to come back in June for another MRI but besides that I'm not
sure how much we'll have to come back here for them to monitor her progress.
Her rash from the reaction to the antibiotic is clearing up finally. They
started to think that another medication might be aggravating it so they
switched her to a different "family" of antibiotics and it helped so
much. It's been two days and the itching is almost gone. We are very
thankful for that.
She really is doing well. She has some mood swings that are from a combination
of things, some from the treatment and basically just sick and tired of being
sick and tired! She was in the greatest mood on Saturday and just giggled her
way through it! She is still doing physical therapy and occupational therapy.
She's practicing walking with a walker in physical therapy and she's doing very
well. They are really pleased with her progress. Her foot placement and gait
have improved so much. She's also doing better keeping her balance. The
therapists are nice here but she really misses the therapists from CHKD! I'm
sure they would be surprised to hear that! She gave them such a hard time!
I want to thank everyone again for all that they have done but this week I
would like to say a special thank you to everyone at Todd's Lane Veterinary
Hospital for having the yard sale! You guys ROCK! I also wanted to thank
everyone who supported them and helped out! I got to hear all of the details
from my friend Ann and from my mom and it sounds like it was a huge success and
everyone seemed to have a good time! Ann said that everyone was worried about
rain but that Taylor must be in good with someone because even though the
clouds were there, the rain never fell! Thank you again! The support that we
receive is incredible and will never be forgotten! Please keep the prayers
coming. They are working and she is making great progress. Her doctors are
pleased with what they see and we could not ask for more.
Sorry that I ramble on for so long in these updates! There's just so much to
say! Well, I'm going to go back to Taylor's room and see what shenanigans she
and her dad are up to! Last week they scared the nurse with a pair of round
glasses that magnify your eyes and some Bubba teeth! Taylor pulled the blanket
over her head and when she pulled it off for the nurse to check her out, the
nurse screamed! It was so funny!
We miss you all and can't wait to be home!
Love,
Amy
4/22/03
Hello there!
Happy Easter! I hope you all had a nice day. It's been a crazy couple of days! I'm not sure where I left off in the last email but here's the latest!
Everything went fine with the ambulance trip to NIH. Taylor actually enjoyed it! We had two nurses from the hospital, a paramedic, an EMT and Dad and me! Taylor and her posse! She had a great day on Friday and Saturday was good too. the Easter Bunny came and Sunday morning it looked like Christmas in her room! Grandma had sent candy for her to pass out to all of the doctors and nurses and she loved it! Her external ventricular drain (EVD) quit working Sunday morning and they thought they might have to do surgery that day. Well, they decided to wait until Monday to see how she was doing. Monday morning she felt pretty good so they decided to go ahead with her treatments. She did fine with those and when we got back in the afternoon, she had another CT Scan. It showed that her ventricles were "plumping" up with spinal fluid and the pressure was building so they went in this morning (Tuesday), and changed out the EVD. It took about an hour and she came through it just fine. We have almost lost track of how many surgeries this poor kid has been through but we think this was about # 10. Keith and I were wondering if they had a frequent surgery card that she could have punched and maybe after ten surgeries get one free! Ha ha! Treatment should resume tomorrow. Right now they are talking about keeping this EVD in for about ten days and then popping in another shunt. So, it looks like we might be here for almost two more weeks. The EVD was clogged with something and they don't want to rush putting a shunt back in and risking that it will become clogged again. I tell you, this crash course in Neurosurgery is not effective. We have no idea how all of this stuff works and only understand bits and pieces. Basically, one of the ventricles that drains her tissue there preventing it from working properly. That's why the fluid keeps building up and that's why she needs to have the EVD or shunt in. The EVD is only a temporary fix but the shunt is permanent. As long as it keeps working! I hope that makes a little bit of sense!
We are still doing fine. Tired and confused most of the time but we're hanging in there! We appreciate all of the support and are thankful that everyone is still remembering her and us in prayer. We don't understand God's plan but we are keeping the faith and continually praying for "total and complete healing"!
She misses everyone so much, especially her friends and classmates. She is also really bummed about missing so much of Fourth Grade. She even asked if she could go back next year so she could go on all of the field trips and spend a whole school year with Mrs. Stook!
Well, that's all for now. Thank you again for everything! We love and really miss all of you!
Love,
Amy
4/17/03
Hello there!
Sorry that I haven't been able to write in a few days.
They are keeping us really busy! So here's the latest:
Well, today is Thursday and the cultures of her spinal
fluid are still negative. Yeah! They are still not sure what caused the shunt
malfunction. They took another sample of spinal fluid yesterday and said that
the preliminary findings show elevated levels of something and they are waiting
for the official results to determine what it is. So, we wait some more. She
had an awful reaction to a new antibiotic that they gave her two days ago. She
broke out in a very itchy rash and even though they stopped the medicine,
yesterday it got worse instead of better, They said that it could take a few
days for it to get out of her system so hopefully today it will start to clear
up.
They are starting her chemotherapy again today! Yeah!!
She will receive it in her room then they will clamp off her external drain and
transport her by ambulance to NIH for the radiation and then bring her back. We
are very thankful that they were able to figure out a way for the therapy to
continue.
Her room looks great! I have taken pictures and will
try to think of a way to send them so everyone can see. We made flowers and
hung them everywhere and hung streamers from the ceiling! It looks so cool!
Everyone says that Taylor has the coolest room ever and they want to hire her
to decorate the rest of the fourth floor! We rigged up a balloon drop over her
door and got two of her nurses with it! They were so surprised when they came
in and the balloons started falling! Taylor really got a kick out of that. We
colored Easter eggs in her room last night and they came out really pretty!
Someone had sent up a kit that had glow in the dark paint for the eggs and we
put some on Taylor's face and called the nurse in. We said that we were worried
that she was having another reaction to something and asked her to turn out the
lights. Well, when she did, Taylor's face glowed in the dark and the nurse was
freaking out! She had no idea what was going on. Well, Taylor told her what it
was and we started laughing! She said, "You don't know how scared I was
trying to figure out what had happened!" She thought it was really funny
and said that she should have known that we were up to something!
I just wanted to take a moment to thank everyone again
for the cards, packages, gift baskets, contributions and most of all the
continued prayers. It all means so much to us and we will be forever grateful!
The cards and gift baskets that were sent over the weekend via the "Paula
Express" were wonderful! She loved it all!
Well, that's all for now. I'll continue to keep you
posted as much as I can. Thank you again for everything. We love and miss all
of you!
Love,
Amy
4/14/03
Hey there!
This will be another quickie! I have finally found a
Wal-mart and I'm going to venture out to get some supplies for Taylor's room.
She wants to decorate it in "Groovy 70's" theme! She and Keith are
making flowers to hang from the ceiling and I am going to find some other cool
stuff to use! You know, you just have to make the best of it! She feels wonderful
since the surgery! She seemed so much like her old self and she was really
cracking everyone up today. It's very nice to see.
The spinal fluid cultures are still negative so we're
still not sure what we're dealing with. The Infectious Disease doctors have been
called back in and they're scratching their heads. The Neurosurgeon and
Neuro-Oncologist will talk tomorrow to think "out of the box" a
little bit and come up with a creative way for Taylor to continue her
treatments. We'll keep you posted.
Keith and I are doing fine. We take turns staying the
night with her so the other one can get some sleep! It has worked out fine so
far. John and Paula are also doing well but staying busy and working pretty
much all day to make sure that Keith and I can stay up here with Taylor. They
are both so supportive and wonderful. Keith and I are truly blessed!
I know it sounds like we're living a nightmare right
now but we really are doing ok. Our faith is as strong as ever and we feel that
this has happened for a reason and that something good will surely come out of
it. Please keep the prayers coming though...they really help! :)
Love,
Amy
4/13/03
I had an early morning message from Amy right after the first one this morning from Ann. Amy says that Taylor will be in the hospital for about 2 weeks, during this time she will not be able to have any treatments. There is a low grade infection in the brain. They are doing all they can and are very confident in what they are doing. The doctors of course just adore her as we do. Please keep the prayers coming!
4/13/03
Taylor is back in the hospital. The shunt is not working and they are going to remove it today. The surgery will be sometime this morning. The doctor is going to put in an external drain to relieve the pressure on her brain. Amy wasn't sure how long Taylor would be in the hospital but Taylor cannot continue with the chemo and radiation until another shunt is put back in. The doctor believes the shunt stopped working because of a slight infection. Tests will be run to determine if this is the case.
4/11/03
Hello everyone! The computer wasn't available
at the hospital for the last few days so I haven't been able to send an update or
read the posts since Tues. I just got caught up reading all of the posts on the
Dreambook and let me tell you, it helps so much. We are getting a little bit
homesick and some days it's hard to be up here and not have all of our family
and friends around. We have met wonderful people at the hospital, at the
National Institute of Health (NIH) and at Ronald McDonald House (RMH) but it's
not the same. So, visiting the website really helps. Taylor enjoys it too.
She is doing very well this week. The doctors were
very pleased yesterday and she looks wonderful! They decreased the steroid
(Decadron) that she is taking and hopefully by Monday, they'll be able to
decrease it again. Chemotherapy and radiation are going pretty good. The Chemo
drug does not make her sick and so far she hasn't lost her appetite but it has
been squelched a little bit. The Cereport(the drug that opens up the
blood-brain barrier to let the Chemo through) does make her sick to her stomach
and sometimes she throws up while she's getting it. She usually feels better
within about 15-20 minutes. The radiation is usually very quick and she has
tolerated it very well. She is just very tired by the end of the day but
refuses to take a nap in the afternoon. We've even tried calling it a "Siesta"
but still no luck! All in all we are very pleased with her treatment so far.
She is in good spirits most of the time and we are so thankful for that!
Something funny happened this week at RMH. There is an
Amish man staying there. His little boy and wife stay at the hospital and he
just comes back at night to sleep. Well, Taylor has never seen an Amish person
before. She was sitting in the dining room with Keith and saw him walk through
and go into the kitchen. Her eyes got real big and she said, "Daddy,
there's a leprechaun in the kitchen!" It was so cute. Daddy explained to
her that he was Amish and what that meant but she said the next morning that
she thought for sure that he was eating Lucky Charms for breakfast so I'm not
sure that she's convinced!
Well, I'm signing off for now. Thank you again for
everything. We feel so blessed to have so much love and support. You all are
wonderful and we miss everyone so much. Taylor says Hi but hasn't wanted to
write or call. We have been trying to get her to write to her friends or call
but I think it just hurts too bad because she misses them so much! The most I
could get this week is a thank you note to her classmates but I'll keep trying.
She's got a lot on her plate right now and I don't want to stress her out too
much! She's such a strong girl and has put up with so much already. The
Radiology Oncologist at NIH says that Taylor is the bravest girl in the whole
world! I'll second that! Thank you again. We love and miss all of you!
Love,
Amy
4/11/03
Taylor is doing great. Doctors went into see her yesterday and were very impressed at how well she is doing. Taylor is receiving OT and PT twice a week at the RMAH. They are hoping for some nicer weather so they can enjoy some outside time. They were able to catch a movie yesterday!
4/7/03
Just wanted to send a quick
note. It's Monday and we're at the hospital for Taylor's chemotherapy. The
weekend went just fine and she feels so much better since the surgery. We got
home from the hospital yesterday around lunch time. Taylor spent most of the
day just relaxing and hanging out at RMH! (Short for Ronald McDonald House)! We
planted some herb seeds and pansy seeds that my mom had given Taylor and we put
them in the window in the kitchen so everyone will be able to see them grow.
Last night we watched Grease with some of the other families! It was a lot of
fun! Taylor wants to have a cookout at RMH so hopefully the weather will be
nice this weekend so we can do that. We also heard that the circus is in town
so we may try and go to that too.
We love and miss you all!
4/4/03
Taylor went through the surgery fine, there was a clog at the top of the shunt. She will remain in the hospital until Sunday.
4/3/03
Just a quick note, Taylor will be having surgery again tomorrow. It seems that her shunt is not working so the doctor has to go in and fix or replace it. They are unsure of what time but Taylor will be readmitted to the hospital in the morning and will be staying the night. This will cause her to miss a day of chemo and radiation. As soon as we get word as to how things go w/ the surgery it will be posted here.
4/2/03
Just wanted to try and send
something real quick. I just found a computer
at the hospital that families can use so I thought I would take advantage of it
to send an update.
First of all, we want to say Thank You for the medical fund! We really
appreciate it at this time! Our lives have been touched by so many wonderful
people since this happened that we fear we will never be able to thank them
all! It is very difficult to be on the receiving end for so long and not be
able to give something back or properly thank everyone for their prayers,
contributions, cards, love and support. From the bottom of our hearts, thank
you to each and every one of you! You have touched our lives and you will
never be forgotten. To our friends and family that we don't speak to as
often as we wish, we apologize. Our days are so full and time goes by so
fast that we just don't have the opportunity to call as often as we'd like.
Even Taylor said yesterday that it seems the days go by so fast. I think
that is the hardest part of this whole thing - not being able to stay in
contact with everyone as much as we would like. But, please know that we
love you all and think of you often.
Taylor is doing well. I think the biggest problem is the side effects of
the steroid that she is taking to keep the swelling down in her brain. The
dreaded double-edged sword of Decadron! It is so vital but the side effects
are no fun!
Monday went very well. She actually fell asleep during radiation! The
radiation therapists said that they were impressed and that there are adults
who can't do as well as Taylor! It took a long time to set up the machine to
make sure that they would be targeting the right area but from now on it
should only be about a 15-20 minute process.
She is enjoying her time at the Ronald McDonald House! What a wonderful
place! The people who work there are so supportive and caring and the
families that we have met so far are awesome! There is an 18 year old girl
named Michele who is here from Kansas and a 12 year old boy named James
whose family is stationed in Italy. They are both being treated at Walter
Reed Hospital. They are amazing kids and have shown Taylor so much love and
kindness! The play cards, color and watch movies with her! Michele even
introduced Taylor to a new way of eating cereal by adding chocolate syrup
and cookies! We are having a lot of fun! There are church groups and families
that come and cook breakfast and dinner on the weekends so we are eating
extremely well! Taylor sure is happy about that! We are exploring a whole
new world that I didn't know existed before all of this. We have made so
many friends and met so many wonderful people along the way! God has truly
taken care of us and we will be forever thankful to Him for that!
Thank you again to everyone! I have found a computer at the hospital that
families can use so I will try and send updates more often. I hope all of
you are doing well. God bless each and every one of you!
Love,
Amy
3/31/03
Just a quick note from Paula (Taylor's
second mom).
I just wanted to let you know that FM99 talked about Taylor again this
morning. They had gotten word about Taylor's medical fund and gave all
the info on the air. They have also put info on their website. If
you get a chance, you should check it out. I guess they are monitoring
her website for info and updates, too. I can't wait to tell Amy &
Keith when they call. I talked to Keith briefly between chemo &
radiation. She tolerated the chemo very well. She felt a little
flushed and complained of nausea one time, but it passed. I hope the
radiation treatment went OK as well.
Take a look at what FM 99 has
to say!
Monday,
March 31, 2003
03/30/03
Taylor is doing much better today. Taylor and her parents are all staying at the Ronald Mc Donald house close to the hospital and NIH. They will be able to stay there the whole time she is undergoing her treatments. She was released from the hospital on Friday but did not have a very good day, she was in a lot of pain and just not feeling well. On Saturday she returned back to the hospital for a transfusion so that she will be able to start treatments on Monday. The doctors have given her medication for nausea and as of Saturday Amy said there was a big difference in her. She was back to eating and had joined some other children downstairs for games and socializing. She will go tomorrow to the hospital in the morning for her first treatments then around 1:00 she will go to NIH to start the clinical trials. Amy said that she would try to get a more detailed message sent out this afternoon and as soon as I receive it I will post it immediately.
Please continue the prayers, they ARE working.
03/27/03
Surgery went very well yesterday. The shunt was put in and they took the drain out. Taylor was sore and a little uncomfortable last night but they are giving her medicine to help. If all goes well Taylor will be released form the hospital on Friday. She has an appointment at NIH Friday to get everything ready for the clinical trials to start Monday. John and Paula will be traveling to DC on Friday and they are all looking forward to spending some quiet and relaxing family time together outside the hospital.
3/25/03
Hey there! Long time no email!
Well, we've been here a week now and everything is going pretty well. Taylor is
doing fine and still just full of wisecracks! She told a nurse who came in the
other morning at 4:00 am to check her IV to go and pick on someone her own
size! A doctor came in today when she was just starting to doze off and asked
her if he could look in her ear and she asked him to please come back later
because she'd had a busy day so far and she was really tired! She is so
funny!
She has been having some problems with comfort and her breathing but they are
being addressed by the doctors. She also got a visit from the therapists today
and they gave her a little work out. She really enjoyed moving around again.
It's been 3 1/2 week in bed this time! No fun at all!
I'm sorry that I haven't emailed sooner. It's been a hectic week but we think
about all of you and miss you so much!
I'm sure that everyone knows about the infection and that special doctors have
been called in to help get rid of it so we can get the shunt in and proceed
with her treatment. The doctors came today and said that her white blood cell
count which was in the 400's two days ago is now 35 and the cultures for the
last three days have come back negative so they are going to proceed with the
shunt tomorrow. She is scheduled to go in at 9:30 am. This is a pretty routine
surgery so the risks are minimal.
The placement of the shunt will allow Taylor to get started on her treatment.
She will be entering a Clinical Trial at the National Institute of Health (NIH)
on Monday. She will probably begin as inpatient but they expect that she will
be released soon and continue on an outpatient basis. The treatment will
consist of two drugs being given through a catheter at the Children's Hospital
and then we will take her to NIH for the radiation. The two drugs are
Carboplatin and Cereport. Carboplatin is a traditional chemotherapy drug that
kills the cancer cells and works with the radiation to help shrink the tumor.
The problem with brain tumors is that the chemotherapy drug has a hard time
reaching it because of the blood brain barrier which is in place to protect
your brain from toxins and poisons. That is where the Cereport comes in. It
opens up the blood brain barrier and allows the Carboplatin to pass through and
reach the tumor. Her treatment will be five days a week for about six weeks. We
are not sure when she will be released or where we will be going from here.
That will be decided in the next few days.
Once again I just want to tell everyone THANK YOU! Your prayers, love and
support are overwhelming and we are at a loss for words to describe how it
makes us feel. I just read the latest posts to
Love,
Amy
Amy called last night to let me
know she would be sending a detailed update very soon.
Amy, Keith and the doctors are still discussing possible treatments for Taylor. The plan is to hopefully start Monday or shortly there after. They will be doing surgery to put the shunt in Monday or Tuesday of next week which needs to be done before they start treatment. The doctors had planned on putting the shunt in Friday but Taylor is still showing signs of an infection and she needs to be healthy when the shunt goes in. Amy and Keith have been told that Taylor will need to stay in DC for six weeks to receive treatment. Taylor would love to hear from everyone so send her some cards to brighten her day!!!!
Taylor Adkins
Room 4117
c/o Children's
Taylor and her parents arrived In DC yesterday. The trip went well and they are getting settled. Amy and Keith have been talking to doctors about treatment plans and they are hoping to start Monday. They should have more information towards the end of the week about the treatments. Please continue with all the prayers.
I have only had one update today and it was just to let me know that Taylor was going to Washington D.C. today. Check back for further updates. Keep the prayers coming.
3/17/03
Just a brief update, Taylor did not go to Washington today. She had
to have another C.A.T scan done and also was going to be examined by several
other doctors. On Saturday she underwent another surgery to have a
drainage tube put in to help disperse of the spinal fluid. Saturday she
was very tired when we visited but by Sunday she was doing somewhat
better. Please continue to keep Taylor and her family in your prayers.
I have just received a phone
message from mom. They have gotten the results back from John Hopkins and
Taylor has a Gliomas grade four tumor. She has an appointment on Tuesday
at Children's National Medical Center in Washington, D.C.. They have been
told that they can do a more specialized treatment there.
On a little brighter note, Taylor has been enjoying making English muffin
pizza's & Ice cream sundaes. She is back in school at the hospital
and doing extremely well. On one of her assessment test she did so well
that the teacher kept rechecking it. :) Amy says that she has her good and
bad moments but for the most part is doing ok. Amy, Keith and Taylor will
be leaving Monday for D.C.. They are not sure as to how long they will be gone,
it could be a couple of days or a couple of weeks.
Whenever you ask what they need the answer is always the same "PLEASE KEEP THE PRAYERS COMING."
Today the students of Gloria Dei Lutheran School had their annual "Jump Rope for Heart" event (they have raised over $22,800.00 at this time). This years event was dedicated to Taylor. The children all wore their purple ribbons to show that they are always thinking of her. At the entrance to the event were banners that the students had made and gifts from all of the classes that participated. Taylor was suppose to attend the event as the guest of honor, but with all the recent developments she was unable to attend. Paula (Taylor's second mom) attended the event for Taylor. While there she was interviewed by Channel 3 news. A good time was had by all who attended, and a big thanks goes out to our very own Mary Austin (physical fitness teacher) for always making the event a success. Below are some pictures taken today.
No
news again today. We talked to the Dr. and he said that John's Hopkins can't
decide what grade the tumor is. Thank God they are taking their time. I believe
that with all the prayers out there that the situation is changing right before
their eyes! Total and complete healing is what we've been praying for and we
won't accept anything less! Thank you for the prayers! And to all of the
friends of the friends that are writing, thank you for taking the time to post
your heartfelt messages. They bring us such comfort and strength. I got a
letter today from my mom's aunt who said that her faith had been renewed by all
of this. There are many people who we've talked to who have told us that they
haven't prayed in a long time or that they never believed in God and since all
of this has happened they have prayed and started to believe in the miracles
that God can perform! I believe that Taylor's story has helped so many people
and that God will see her through this....totally and completely so she can
return home and to her church, her school and her friends! Thank you to
all who have prayed and passed her story on! Also, thank you to all who
have made the purple ribbons and are passing them out!
Love,
Amy
A word from mom:
I hate to sound like a broken
record but I'm going to say it again. Thank you so much for the prayers. The
comfort that it brings all of us is indescribable. I know at a time like this
everyone wonders what they can do and let me tell you, you're doing a lot for
all of us. We tell
3/7/03
They have not received any results back yet and are not sure when they will. Taylor had a good day today with lots of laughs. She has been moved from the PICU into a private room on the 8th floor. As soon as there is any news it will be posted to the website.
A word from mom:
Just wanted to give a little update and clarity to this very confusing and ever
changing situation. First and foremost, THANK YOU FOR THE PRAYERS! They are
working! Taylor had an awesome day today!! She started the day a little slow
and was in a lot of pain but after a good breakfast and some medicine, she was
truly herself again! She had all of us in stitches all day! She was singing and
carrying on just like always! She felt so good. She said that she wanted to get
up and run or go swimming or something! There is a wonderful Child Life
Specialist in the PICU that we met the last time Taylor was there. She asked
Now on to the yucky stuff. Taylor does know about the tumor and that they are pretty sure that it's malignant. She also knows that she is in the best place for her care and that everyone is praying for her. She took the news really well and just said that she wished that she didn't have cancer. We really don't know a lot at this point. They actually sent samples to Johns Hopkins and we should hear something tomorrow. Dr. Dilustro, the neurosurgeon who has been treating Taylor all along, said that he is amazed by how well she is doing and that she is one strong little girl! Everyone is amazed by her! She is so strong and so brave! We are not sure what type of treatment that she will have to undergo but I will keep you updated just as soon as we get word. Please tell everyone how much we appreciate their prayers and ask them to continue to remember her! It's working!
Love,
Amy
I have just received a further
update from Taylor's grandmother. The news is not so good at this
time. Taylor's parents have been told that there are 5 possibilities on
the tumor 4 are bad and one is not so good. The slides have been sent to
Baltimore and Philadelphia and results should be in on Friday. Treatment
will NOT start immediately, they have to wait to start the Chemotherapy
after the incision is healed because the Chemo kills the good cells as
well as the bad. As you can imagine there is a lot of confusion and
questions on the part of the family and not all of the information has been
taken in and processed. They have promised to keep everyone informed via
this web page as soon as new information is available. Please pass this
to everyone in your address books, the family thanks you for all your prayers
in the past but ask that you continue to pray and ask anyone that you know to
do the same.
We have just gotten word via
Amy called last night with the
latest update on
WE NEED ANOTHER MIRACLE !!
Your prayers are once again needed. Please email this to everyone you
know just as you have done before. We have seen miracles happen ever since that
Friday in December and we are asking for another. If you have been
following
M. Capone
It
was nice to see everybody today!
It's
about twenty after
I just
wanted to give an update because I won't get a chance in the next few days and
I have a special prayer request. I told you that we took
I hope everyone got to visit
Mom writes...
I have a special prayer request. We found out today that the cornea in her left eye is not healing like they want it to and her sight in that eye is in jeopardy. Taylor will undergo a surgery this Friday morning to seal half of her left eye in hope that it will help it to heal. She will have to go under anesthesia and they have told us that it will not be painful for her but she is really upset about it. It will only be temporary while her eye heals. Please say a special prayer for her comfort and for the surgeons who will perform the procedure. I will tell her that I asked for a special prayer request and I know that it will bring her comfort. They still think that she will come home on Friday so the party is still on for Saturday! If anything changes, I will let you know. Thank you and may God bless all of you for continuing to remember her.
Taylor is GOING HOME!!!!!!!!!
Due to the inclement weather we were unable to go to Daddy's house on Sunday. We decided that we would stay close to the hospital and took Taylor to Waterside. We spent the afternoon at Jillian's (great place!) and played games and had lunch, then we did some shopping and Taylor got a Dr.'s kit from Lillian Vernon ( do I see Medical school in her future?) She wanted to give check-ups to all of the people that have been checking her! So far she has diagnosed one of the clinicians (Vanessa) with high blood pressure and has written her a prescription for some medicine! She really cracks up the staff! They all love her and don't want her to go home! We had dinner at Joe's Crab Shack where she tasted Coconut Shrimp for the first time and loved it! All in all it was a pretty good day.
The MRI that was done last week showed that the blood clot has been completely absorbed which is good news. There is also still some swelling in the area, also good news. There is a small area near the lesion and they're not sure what it is so they ordered another MRI which she had today. She did great and actually fell asleep during it! I was in the room with her and had earplugs in because the noise is so loud and I thought I heard something so I took out my earplugs and sure enough, she was snoring! I was praying the whole time for God to comfort her because the MRIs scare her so much and I tell you, my prayers were answered! God has been so good to us! We should have some results later this week so I'll let you know when we hear something.
She has been to the eye doctor several times in the last week. Because her left eye doesn't blink as much as the right, her cornea has thinned and she has developed some scar tissue and an ulcer on her eye. She has been wearing an eye patch when she sleeps at night to help keep it moist and they use an ointment during the day but her eye needs to be closed more to heal so starting yesterday she will wear a patch all day. They are going to see her again tomorrow and decide if they need to take more drastic measures to help it heal. They have mentioned adding weights to her eyelid to help it stay shut and also sewing it shut temporarily ( ewww, yuck!) to help it heal. They are concerned that if an infection were to set in that she could lose the sight in that eye in a matter of days so whatever needs to be done now to help it heal then so be it.
On a good note, they think that she will be coming home on FRIDAY!!!!! Ten weeks to the day that she went in to the hospital! She will still have many therapies once she comes home. Most of them will take place at a satellite office in Denbigh but there are two aquatic therapies that she will have in Norfolk every week because that's the only place that has a swimming pool. She's really excited about those! We probably will not get home until late on Friday because she will have to complete her therapies for that day but we want to invite everyone, yes everyone, to come over to our house on Saturday for a Welcome Home Party! It will be from 6:00 pm - 8:00 pm. Taylor misses everyone so much so we would love for whoever wants to please come by. If you wouldn't mind getting the message out at school we would really appreciate it! She has all weekend to rest before her therapies start back up on Monday so please tell everyone not to worry about wearing her out! She will love it! If anything changes this week and she can't come on Friday then I'll let you know but they are almost positive that Friday is the big day.
I would also like to say once again how much we appreciate this website. It has been such a blessing for so many people to hear about Taylor's story and her miracle! Most of all we feel blessed to have so many people caring and praying for Taylor and for her family. We feel the prayers everyday and know that God has his hand on her and is taking care of her. We cannot thank everyone enough for their prayers and good wishes. It has meant the world to all of us. So, from the bottom of all of our hearts, THANK YOU and may God bless all of you! You have helped to take care of a very special and wonderful little girl who did not deserve any of this. She has come through with flying colors and never ceases to amaze us or the people at the hospital. I give her a lot of credit and tell her everyday how wonderful she is and how proud we are of her but we also know that without God, none of this would be happening. Please continue to remember her in your thoughts and prayers. We will be forever grateful.
She went outside for the first time in 5 weeks on Friday and had a snowball fight with some of the staff in Rehab. One of the Dr.'s even came out to let Taylor and another patient throw snowballs at him! He was very brave. Here's a picture of the group! At the last moment before I took the picture Taylor dumped her bucket of snow on the Child Life specialist's head! Some things just don't
change!!
Here's a picture of her with Leigha.
Here's a picture with Mrs. Austin.
She was allowed to leave CHKD today and go next door to Norfolk General to have lunch and that's where Mrs. Austin and her family caught up with us. Here's a picture of that.
. She really is doing well and we want to thank everyone for their prayers and ask them to please continue to remember her. The doctors think that we will be at CHKD for at least another three weeks or so but they are wonderful and are helping her so much so it's where she needs to be for now. As far as another surgery goes, we're not sure what or when. The neurosurgeon wants to do another MRI in 2-4 weeks so we'll just have to wait and see.
Love,
Amy
Sunday went really well. Taylor had a good time and the movie was really funny! She enjoyed being at home. She "hung out" in her room for a while listening to music and drawing pictures, played on the computer and then laid on the couch and watched TV!! I tell ya, it the simple things that we miss the most!
She has made some progress and is allowed to have Jell-O, ice cream and frozen yogurt. They are going to reevaluate her on Friday (not another video swallow just observation) and decide if she can start having thin liquids by spoon. She did well with them by spoon on the test but when she would drink through the straw she aspirated just a little because it was just too much liquid at one time. She was able to cough and clear it each time which pleased them but they don't want to push it right now. So we're thrilled with this step forward! Taylor is happy too but she wanted to be able to have it all...now!!
She's going to have another MRI at the end of this week or at the beginning of next week. Please pray for her. Not just for the outcome to be good but please pray for her to be comforted because she's really nervous about it. This is the third one. The first one she was still really sick and doesn't remember but the last one scared her. She did amazing last time and I know she will this time too but I feel bad that she's so anxious about it. This MRI will tell us more about the swelling and will let the Dr.'s decide how they are going to treat her from here.
|
I just wanted to send
a quick e-mail to let you know Taylor had a swallow study done today and
things went pretty good. She still cannot have the thin liquids but she
can have ice cream. Taylor was very excited about that. Hopefully
soon she will be able to have thin liquids, she really wants some water! |
Taylor looked great!
Yesterday, Taylor had several visitors from school, Mrs. Austin, Mrs. Stook and Mrs. Capone. When I arrived at CHKD Taylor was in the sitting area outside of her room playing cards w/ one of her friends. I can not begin to tell you how wonderful she looked. She turned and looked at myself and my daughter and gave that smile that only Taylor could give. I had brought her a laptop so that she could play her favorite computer game "Chips Challenge" and let me tell you it didn't take her anytime to figure out how to maneuver around that keyboard. I was amazed. After she enjoyed a hearty Chinese dinner that her mom had ordered out for her. Taylor and my daughter Stephanie proceeded to streak their hair w/ this Purple hair stuff (that stuck like glue). When they were all done Taylor had purple streaks throughout all of her hair. What a wonderful job they did.
Sunday, Taylor has a big day
planned, she gets to leave the hospital for a few hours. Her plans
are to go out to lunch with all of her parents to Long John Silvers then take
in a movie at the AMC theaters (Kangaroo Jack).
I know she will have a wonderful time.
Mom called with an update!
Taylor is making progress on a daily basis. She is in therapy and
school Monday through Saturday. This keeps her very busy and she is tired
at the end of the day. There is still some swelling of the brain at this
time. Taylor is now ready to have visitors but because of her busy
weekday schedule mom has requested that visits be on Saturday afternoon between
3:00 & 8:00 p.m.. Taylor would love to see her
classmates. Taylor will continue to be able to go home on Sundays.
Mom said the first trip home went well and the dogs were excited to see
her. As a matter of fact the dogs were so excited to see her that they
knocked the digital camera off the counter and it has had to go in for
repair. So please check back later for pictures (after mom gets the camera
back).
What great news Taylor has to tell us!!!!!
Hello everyone Thank you for
praying for me!!!!!!!!!!!!!!!!! Thank you for the cards. I'm doing fine. On
Sunday I get to go home for 8 hours. I'm excited! I miss everyone a lot. Got to
go. Bye.
Update
Hello there!
I am sorry I haven't written in a while. Our days are very busy with therapies, doctors and of course meals!! I just wanted to give you an update and send some new pictures!
First of all the swallow study did not go as well as we had hoped. There is a small delay sometimes when she swallows and they want to hold off on thin liquids for a little longer. They gave her some exercises to help strengthen the muscles in her throat so she has been doing those. Say a prayer for the next one. It should be in a week or two.
Taylor has been excelling at her physical therapy, speech therapy and occupational therapy. She stood up on her own on Friday and with the help of her therapist actually walked across the room!! Taylor was very encouraged by all of this because it's one step closer to her "old self"! She thinks that it's odd that we are so excited about her sitting up and standing by herself because she's been doing it for so many years already! For the most part her spirits are high but she is sometimes discouraged because things are so much more difficult to do and she cannot do so many things by herself. She is very determined and wants to try and do whatever she can on her own. It's hard sometimes to watch her struggle with something but she needs to and wants to try and do it by herself. Here's a picture of her hard at work at physical therapy.
1/15/03 Update
The neurosurgeon met with the family to discuss Taylor's MRI. There is still some swelling on her brain so they were unable to get an exact location of the bleed but they believe it is in the cerebellum rather than the brain stem. Another MRI will be done at a later date.
|
Taylor is continuing to make great progress. Her therapist said
her recovery has been amazing! The family will meet with the
neurosurgeon today for the MRI results. The doctors have also planned
another swallow study to see if Taylor can tolerate liquids. If so,
they can remove the feeding tube. |
MRI update
Taylor is finished with the MRI and everything went well. There are no results at this time. When mom called Taylor was having speech therapy and all was well. Keep the prayers coming.
Update
The neurosurgeon came by today and has scheduled an MRI for first thing tomorrow morning. Please say a prayer for Taylor as they hope this will show them the exact location of her bleed, how large it is and then they will determine what type of surgery they will perform to make sure that this never happens again.
We were able to use the hospital chapel and have a short church service that she attended. It was wonderful! The pastor from her father's church, his wife and two of their members came and our family was there. It was a packed house! (The chapel only seats 12!)
A message from Taylor !!!
Dear Everybody,
Thank you for praying for me. I'm doing fine. Thanks. Gotta finish eating, gotta go. Thanks.
Bye bye,
Taylor
Taylor received an autographed poster of Creed from FM 99 !!
Update
The family spoke with the neurosurgeon yesterday. He is very pleased and excited with Taylor's progress. He said once the swelling on her brain subsides they can talk about what the next step will be. As for now, the risks of operating are greater than the chances of a re-bleed. Taylor will continue with her therapy and school. She is getting stronger everyday.
Taylor has been very excited about all the posts on this site. Amy prints them out for her daily and reads them to her. Taylor and her family are very touched by all the messages. Taylor misses her class, friends, and family and their messages really brighten her day. Please continue to send them.
Update
Taylor did great during the angiogram yesterday. She handled the anesthesia very well in fact Taylor woke up hungry! The Doctor that performed the test said that they didn't find anything (no abnormalities) which allowed them to rule out possibilities of the cause of her bleed. They have determined that Taylor has a cavernous angioma. The family will be meeting with the vascular neurosurgeon soon to discuss the next steps that need to be taken. In the mean time, Taylor is continuing with school and therapy. She is doing great, making progress everyday.
The family would like to thank
everyone for all the prayers. They are definitely being answered so keep
on praying!
Please take the time to sign the dreambook as often as you visit the site so that Taylor & her family and friends may see all the people who have taken the time to stop and pray for her recovery.
Update on Procedure
1/7/03 @
We have just heard that the doctors are saying the procedure went well. Taylor is just now beginning to wake up. Check back later for further updates.
Special prayer request!
We have received a request for special prayers to be said starting around 9:30 am on Tuesday 01/07/03. Taylor is going to be undergoing an angiogram to determine the severity and exact location of the bleed in her brain. This test does come with some risks, one being temporary loss of some of the skills she has gained. Please continue to keep Taylor in your prayers especially during this procedure. The testing will begin sometime between 9:30 & 10:00 a.m. on Tuesday 01/07/03.
Exciting News!
Taylor called her class this afternoon and was able to say HI ! All the kids were so excited.
A Short Update
I received a short email from
mom today. She wrote to say that Taylor is doing great but they are
really working her and she is pretty tired but all is well. She also said
that all the messages and prayers left by people on the this site have been a
great source of strength and inspiration for the family. She wrote
"The messages that people leave are so wonderful and heartfelt and I know
that their prayers are being answered!"
So keep the prayers going and please sign the dreambook.
Update 1/3/03
Taylor has been moved from
PICU to Rehab!
She will have very busy and full days with school and her therapies. Taylor's doctors are very optimistic and are excited about her recovery. Taylor had the swallow study yesterday and did very well. Her first food, mashed potatoes! Taylor is doing great with her speech--talking away! Taylor's sense of humor continues to be wonderful. She has been very positive and has smiles and laughs for everyone.
What a miracle she is. Please continue to pray for her recovery.
Another Miracle Update!
What an amazing day they have
had and it's not even over! Taylor is doing great! They have
removed the drain from her head and now they will monitor the pressure in the
PICU for a few days to see how she does. Taylor had another CAT scan and
everything looked good. The doctors are planning to do a video swallow
study to determine how she is doing with swallowing. If Taylor passes the
test she gets to eat!!!
She has been eating ice chips and they let her have a little of a Popsicle
today, which was the best grape Popsicle ever!
Taylor's speech has really taken off. She has been saying no, yes, me
too, ok, ice and bye. Taylor has also been laughing a lot today which is
another answer to lots of prayers. In the last update Amy mentioned that
Taylor had been down and to continue to pray for her, well today Taylor has
been full of smiles.
WOW, THE POWER OF PRAYER!
Taylor had a special treat today. A dog named Maggie came to visit the children in PICU. Maggie got in bed with Taylor and snuggled right up to her. Taylor loved the visit. (pictures of Taylor & Maggie coming soon!)
Please continue to Pray for Taylor and her family.
A message from Mom !
Taylor is back in the P.I.C.U but it's for a good reason. They need the equipment
in there to monitor the pressure in her head when they turn off the EVD (the
drain in her head). If all goes well in the next few days and the spinal fluid
drains as it should, they can pull the drain out of her head. If it does not
then they will have to put a shunt in. We of course are praying for all to go
well. She moved her right leg on command the night before last and has
continued to do so. She also has some movement in her right hand! It's been an
amazing few days with that girl! Yesterday she lifted her head off of her
pillow! She was making a new face that we call her "Elvis" face where
she wrinkles up her nose and raises her lip on one side. Today, she started
winking at me! She is so precious!
She seems to be getting little depressed here and there which they tell us is
normal, so we have really been trying to keep the mood light with her. She's
bummed out because there are so many things that she cannot do. We are always
with her and are trying to keep her smiling but we are there to talk about the
serious stuff too. It's has been such a challenge. Not for us handling all of
this but watching her go through all of it. She has amazed all of us and the
doctors and nurses! I just wanted to fill you in
and to please ask everyone to continue praying for her. I worry that with all
of the positive, people will forget and she still needs their prayers. She has
such a long road ahead of her. Two weeks and two days later, the
word in the PICU is that the hand of GOD is visible in her room and that she is
so much more than just a Christmas Miracle. It has changed all of their lives
to be involved with her! So, when I ask for continued prayers, I know that they
are the reason that we have come this far but we still have a long way for
Taylor to go. Please give everyone our sincerest heartfelt thanks and let them
know that their prayers and GOD are the reasons that we still have
Taylor.
Love,
Amy
P.S. Just wanted to share a funny story with you. My brother made an
alphabet board for her and she squeezes our hand or nods when we get to a
letter that she wants to spell out a word. He brought it yesterday and the
first word she spelled was FOOD. This morning she spelled FOOD again and I told
her that we were not starving her. That they were feeding her but it was going
straight into her belly through a tube that goes down her nose. Then she
spelled out CHEW AND TASTE. I said you want to chew it and taste it first, huh?
Yes, she nodded! I felt so bad for her! Keith came in and she spelled out
RESTAURANT. We played 20 questions and the thing she picked was FOOD. Tonight I
asked her if she wanted to spell out something and she nodded yes. I asked her
is she was going to spell FOOD again and she shook her head no. Well she got as
far as McD and I said McDonald's? and she nodded yes! The poor girl is so
hungry! But her choice of words to communicate that to us really cracked us up
today! She is so funny! Thank God for her ability to spell!
Update
Taylor was doing well toady. She
knew who I was and responded when I spoke to her. She looked
great!! When I asked if her mom and dad were fussing over her she gave a
smile and shook her head yes. Then when I told her I was leaving she gave
a little wave with her left hand. Taylor has come along way in the two
weeks but still has a long road ahead of her. So keep remembering her and
her family in your prayers and continue to pass this site along so more prayers
can be said. REMEMBER THE POWER OF PRAYER ! Know also that all of
the messages that you leave are being printed and given to Taylor and her
family so that when all of this is over they can show Taylor all the people
that were praying for her and all the messages that have been sent. Mom
and dad both read the comments on a daily basis and expressed how much all of
this means to them.
M. Capone
Update
Taylor's sense of humor is in full
swing! She laughed and was full of smiles on Christmas. Taylor
celebrated Christmas with her family and had a great day. Taylor has been
very responsive and continues to make great progress. In addition to her
laughs she wiggled her right toes for the doctor.
Please continue to keep Taylor in your prayers.
Update
Taylor is doing great! Now that she is out of ICU her family is able to spend more time with her. Speech, Occupational, and Physical therapy have been in working with her as well. She is getting stronger by the day! Please continue to pray for Taylor and her family.
A Good News Update!
Taylor is being moved to a regular room today and all phone calls will go to her bedside, at this point the family is asking that you check the web page for any updates rather than calling Taylor's room. Amy and Keith greatly appreciate all the calls but right now Taylor needs all the rest she can get. Therefore we will be posting daily updates on this site. Please keep the prayers coming and Please sign her Dreambook .
A message from Taylor's mom.
This is Taylor's mommy and I
just wanted to tell everyone how much your thoughts and prayers have meant to
all of us. I was just in with
A message from Taylor's dad and step mom.
This is Taylor's dad and step
mom. We are overwhelmed at the incredible outpouring of support that we have
received from all over the world through this website. We are receiving
blessings each day through the support of so many friends. We would like to
extend a special thank you to the staff at Gloria Dei....we feel that you
played an extremely vital role in getting Taylor immediate medical attention.
We are forever grateful!! To each and every individual who has called, visited,
and prayed we can't thank you enough. The generosity of the employees at Howmet
Corporation has left us speechless. To the staff at CHKD.....you all are so
incredible. You give us so much hope for a better tomorrow. Thank you all from
the bottom of our hearts. I know that God will bless each of you because of
your caring and giving. God bless you all.....
Keith and Paula AdkinsAu