Journal History
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Tuesday, April 26, 2005 10:55 AM CDT
Hello Everyone,
It has been a long time, I have been busy! Logan is 9 1/2 months now and crawling all over, I'm sure he will be walking very soon! He has blonde hair (very wild) and he is working on his 6th tooth. He looks so much like Taylor. He is a very good baby, God and Taylor really blessed us.
Landon is growing up and he is doing great in school. Logan just adores Landon as soon as he comes home from school Logan is always so excited to see him.
Our shop (Performance OffRoad) is doing great, within the last two months it has been really busy, Jeff is still working both places and we now have two full time employees.
We don't get to see Jeff too much but one day it will pay off.
I Am still selling Premier Designs and Partylite. I starting training for a triathlon about two months ago and I did my first one on Saturday. It was called St. Anthony's (Meek & Mighty) I loved it and I am going to keep on training so I can do more and so I can finish in the top 3. That is my goal. I didn't do to bad for my first one I came in 8th out of 20 (in my age group) 500 people total did this one.
I also started my own Relay for life team (for the American Cancer Society) is is called Taylor's Tribe and my team goal is to raise $3,000. I will let you know how we did, it is this friday April 29th.
Thank you for keeping us in your thoughts and prayers!!
Love, Jeff, Angie, Landon, Logan and Angel Taylor
Friday, October 1, 2004 2:44 PM CDT
Hello,
It was five years ago today that we had dicovered our worst nightmare was about to begin, Taylor was diagnosed with cancer. I have not been having a good day and I did not even realize what the date was until about 3:30 this afternoon. We still think about Taylor everyday and it is still very hard.
I do have a few things that make me smile all the time and that is our precious baby boy. He will allready be 3 months next week and he weights about 14.5 pounds. He is the best little baby, he smiles all the time. Eveytime I look at him he gives me a big smile and the cute dimples on his face just make me laugh. I am nursing him and that is going great, we have started giving him a few ounces of formula just at night and now he sleeps til about 5:00 am. Logan loves to be on the go, and we are most of the time. Landon has football practice on Tues. and Thurs. and then a game every Saturday. He has CCD classes at church on Weds. and now starting next week he will have soccer practice on mondays and Weds. Landon's activites keep us very busy.
Logan was baptized on Saturday, September 25th. He was such a good baby and of course he looked adorable.
Taylor's birthday was hard (she would have been 9 years old)we spent most of the day with friends, we were also getting ready for the hurricane. They seem to like our state this year!!! We did not get any damage from any of them but it was a little scary, we lost power with Francis for about 22 hours.
I am still staying busy with my jewelry parties and enjoying getting out vistiting with other women, now that I have a house of boys.
Landon is doing great in school and the teachers have noticed a big change from last year. He loves having Logan around and thinks it is pretty cool that we watch him practice football (and soon soccer) He reads to us every night and now Logan is really smiling so Landon loves to make him smile.
I still have Logan in a bassinet in our room and I still am not sure if I am ready for a crib to be in Taylor's room or not. I was going to just put the crib in there and keep everything else the same but I don't know, we might have to put the crib in our room.
Logan still has alot of hair he did not lose any of it, it only got lighter. He truly is a blessing and I don't know how I would have made it this far without him!!!!
Love, Angie, Jeff,Landon, Logan and Angel Taylor
Tuesday, July 13, 2004 9:36 PM CDT
Hello,
Our new addition has arrived and his name is :
LOGAN TAYLOR JOHNSON
Born July 6 at 12:47 am.
8 Pounds 13.5 oz.
He was induced a week early because we knew he was going to be a big baby.
If you want to know how I am doing read the poem that was written in the guest book on July 5th.
I has been very rough the last couple months and my emotions have been flying. But since last tuesday when Logan was born the minute I seen him I knew he was sent to me by God and Taylor because I can honestly say I don't know how I would have made it through today without holding my precious baby boy. Every time I look at him I just have to smile, He is just so cute!!!
Landon is a proud big brother and loves to show him off!
Love Angie
Thursday, May 13, 2004 3:04 PM CDT
Hello,
It has been ten months that Taylor has been gone and some days I still can't believe this all happened, I now realize that the pain will never go away. You learn to deal with it but there has not yet been a day that I don't think about Taylor and how I wish I could have changed the outcome. I still have days that I just get into a funk and it feels like I will lose my mind at any moment, then I will get this stength within me and somehow I am able to go on with my life. I find I don't do well by myself so I do try and stay very busy, I love to get together with friends as much as possible. I have been busy selling jewelry and I love that, and the money is great! (If anyone is interested just let me know)
I also know that I will never be able to change Taylors room I will always leave it just the way it is. If we ever move I will make sure we have an extra room so I can put all of her things back in it. Taylor's room has so many good memories and no one will ever be able to take away the feeling I get when I sit on her bed. It is very hard I never leave without shedding several tears but they are all worth it. Sweetheart still sleeps in Taylor's room and every now and then she will sleep right by Landon's head but then she moves and goes back to Taylor's room.
Last week I woke up to Landon who was just balling, so I ran into his room and asked him what was wrong, he must have been dreaming and woke himself up, but he said he missed Taylor. So of course I lost it and had to let Jeff handle things for a few minutes and Landon just did not want to talk about it. All three of us then cuddled together and spent the rest of the night in Landon's bed.
He has had several outburst and most of then happen when he is bored and has no one to play with.
I think this baby will help him so much, I can't wait. I am down to 7-8 weeks left. We still don't have a name yet.
I will have another sonogram in about three weeks and if this baby is going to be big then the doctor said he will induce me a week or two early.My labor is very fast and I had both Taylor and Landon all natural. Taylor weighed 9lbs 4 oz. Landon was 9lbs 10 oz. Hopefully I will not have any problems.
Our business Performance OffRoad is starting to pick up,it is hard getting a business going and we were told that the first year is the hardest and they are right. So if you know of anyone who needs tires,wheels, a lift, suspension, spray in bedliners, nerf bars,shock boots, shocks, brush guards, bumpers,KC lights, light covers, You name it and we can get it!!!! and install it. We are your Off-Road superstore!!
The address is 412 W. Waters Ave (just west of Florida Ave)
I also wanted to thank a girl scout troop (Judy Nyberg & Robin Tara's) They planted a tree at our church in memory of Taylor, so we wanted to let them know how much that meant to us. Thank you!!
We also walked in the Relay for Life and I think that alot of people do not realize what a big deal this is, it was my first and I will do this every year. Next year Jeff and I have plans on getting our own team together(15 people), we will have t-shirts made with Taylors picture on the back. We had alot of fun, you can camp over night and they have activities all night long and someone from your team has to be walking at all time. Landon even had fun!!! Next year we can only hope to get some family and friends to join us.
Love to all!!
Angie, Jeff, Landon, baby and Angel Taylor
Friday, March 26, 2004 1:55 PM CST
Hello,
I know it has been a while but we are all doing OK. We still have our moments and I'm sure we always will, It has been 8 1/2 months and not a day does by that I don't think of Taylor. I miss her so much. We were brave and watched some of ours videos and I can't help but feel robbed and Taylor was robbed of a good life with us. We were watching a video before she was diagnosed and she was so full of life, we laughed and we cried and wished things could have been different for us.
We are still trying to get ahead but I don't know if that will ever happen, Jeff will stay with is full time job and work in our shop when he can. I started selling Premier Designs (High Fashion Jewlery) and I am also getting back into Partylite (candles) so between the two of them hopefully I can be making some money. So if anyone is interested in having a show let me know. I am also flying to Idaho on April 5th to sign up a friends mother, because she want to start selling the jewlery. I will then get 10 f everything she sells.
Landon is doing Ok, he still needs to take school a little more seriously because he gets in trouble for talking to much, he always has ants in his pants. I am waiting for him to grow out of this.
My pregnancy is going great, I have had no problems. I have now accepted the fact that I am not having a girl and life will go on. I was very disappointed but now I think I understand why God is giving me another boy. I am not going to change Taylors room, the baby will sleep in our room for a few months then I think I will put the crib in Taylor room but leave everything the way that is it. When he is about 18 months then he can sleep with Landon.
I was also rear-ended in my car in January and when we went to get it fixed the damage was more than what my car was worth so they totaled it and gave me a check, so they came and took my car. So that meant we had to buy another vehicle. I was OK and I went to the doctor to check the baby out and he was fine as well.
Then the cemetery called us and told us the plots were going up in price and also they were filling up so we were told if we wanted the two plots next to Taylor we better get them now. Well how could we let somebody else take those spots, be had to get them, now of couse we can't afford this but we will be making payments. Did I mention that this pregnancy was not planned there fore we do not have maternity coverage. Isn't life grand!!
I am waiting for something really big to happen in our lives, many people have told us when something bad happens something good will always follow. I am trying very hard to keep my faith and pray everynight. I am also reading the Purpose Driven Life --What on earth am I here for? I am trying to understand why things happen like they do. If I don't get it the first time I am going to read it again.
I had to vent, I am having one of those days!!
I still don't have a boys name picked out yet.
Jeff and I are also trying to raise money for the RELAY FOR LIFE - American Cancer Society. We will be walking and this will be held on April 30-May 1. We would love for anyone to join us!! If you would like to get a luminaria to memorialize or honor someone you love, or just donate money you can send a check to us, made payable to The American Cancer Society. The Luminaria walk will be friday night (4-30-04) at 9:00pm. We all know this is for a great cause!!!
Our address is: 23205 Saint George Pl
Land O Lakes, Fl 34639
Thanks for your support!!
Love,
Angie, Jeff, Landon, Angel Taylor and baby Boy ????
Sunday, January 18, 2004 7:55 PM CST
Tuesday, February 3,2004
It's a boy, and they think I am a week less than what I thought so my new due date will be JULY 13.
Hello,
I just wanted to let everyone know that I am feeling great, I never had any morning sickness I was only tired the first three months. I am very emotional these days and think about Taylor all the time. I am truely blessed to have this baby inside me because it does help ease the pain I will always carry in my heart. I am now starting my 17th week and I will have my ultrasound on Feb. 2nd. Of course we will find out what the sex is because I can hardly stand not knowing, I'm sure you all know what I an hoping for!!
I will update my web page that day because I know so many of you want to know as well.
Landon is doing so much better, he is just thrilled that their is a baby growing inside me. Since we told him he has not been getting in trouble in school and just seems to be a little happier. I even brought Landon with me to one of my doctor appointments and he was able to hear the baby's heart beat.
Other than that I try to take one day at a time and pray to God and Taylor to help me get though another day.
Love, Angie,Jeff,Landon, baby and Angel Taylor
Friday, December 26, 2003 5:57 PM CST
Hello,
For the longest time I have been thinking about things that have happened in my life and a few strange things have happened and I always think, (is that Taylor is she trying to show me a sign?) I never really know what to think. I do know that I have been having a very difficult time and sometimes I think that I just can't go on anymore without my beautiful daughter. Something has happened in our lives and I don't think that anymore, something that was not planned by me but I truely believe that it is in God's plan and he knows what he's doing. I think Taylor is watching over me and knows what is best for me as well. The great news I have to share is I am pregnant!! I am (I think, 13 weeks) I could be off a week, my due date is July 6th, and if I am off a week it will be JULY 13. I will have a ultrasound the first week in Feb. and they might be able to tell which date is closer but then most people do not deliver on their due date, either way I think it is a sign from Taylor and I know she is always going to be watching over this baby.
Landon was so happy, if you just could have seen the look on his face it would have made you cry. He has been telling us the past few months that he did not want to be the only child and he wants a baby sister. I heard him tell his friend " God put a baby in my mom's belly because he dosen't want me to be the only child"
This has made me to be a little stronger because I don't know how I would have made it threw Christmas without the joy of having a new baby.
That is our wonderful Christmas news, and hopefully 2004 will be a great one.
Have A Happy New Year!
Love. Angie, Jeff, Landon, Angel Taylor and Baby
Sunday, December 14, 2003 12:43 AM CST
Hello,
We would like wish everyone a Merry Christmas!!
This month has been very hard but I am getting through it and I did get my tree put up and it is beautiful. It is all angels and I even found pink ribbon with gold trim and purple ribbon with gold trim. After decorating my tree I was in the mood so I put up a few other decorations and Jeff decorated the outside.
I still can't believe that Taylor is gone and not a day goes by that I don't shead a tear. The pain of not having your child with you for christmas is so tremendous I can't even describe the anguish I feel.
Landon is doing OK but he is still having several issues come up that just is not normal for him, he is very emotional and he gets in trouble alot in school, most of the time it is for talking to much and not getting his work done. I think his teachers think he should be fine by now or maybe they forgot that he did lose his sister. He misses her very much and has told me several times that he does not want to be the only child, he wants someone to go to school with and play with.
Jeff is very busy and it seems like the only time I see him is if I go to our store. Things are going good and there is several things that they are working on. They went to Daytona last weekend and there was a monster truck show, it is going to be televised on Dec. 27th on FOX and if you look our sign will be hanging up around the arena (Performance Off-Road of Tampa) and it is also on the monster truck called Monster Patrol.
Thank you all for your thoughts and prayers!
Love Angie
Tuesday, November 18, 2003 9:33 PM CST
Hello,
I know it has been a long time, but the past month has been very hard. Halloween was very difficult, I was never able to put up my decorations I put a few things outside but that was it. I think it was so hard because Taylor loved halloween, she loved every holiday.
We have been busy with the new business, Jeff is almost wearing himself out, because he still works his other job. We are having our grand opening this saturday Nov. 22.
If you live in the area stop in and check us out!!!
412 W. Waters Ave.
Landon has been having a very hard time lately too, he has been having several breakdowns, he is very emotional and he really misses Taylor. Hospice has been coming to the school so I am hoping that it will help him, he is very private about Taylor and it is hard for him to open up.
I am that way alot and I feel I just need to be alone and sometimes Jeff doesn't think that is good. But for now that is my way of coping.
Landon likes soccer but I have found that he is also depressed some of the time he is playing so his mind is not really in the game.
I have also been out of commission the last few days because of my back, it starting hurting saturday and when I woke up sunday morning I got out of bed and I could not move. Jeff woke up because of my crying, I could not stand up, I honestly could not move. Jeff carefully moved me on a blanket and then dragged me into the living room and thats where I spent my day. I was very dissapointed because Nicole called us sunday and wanted to know if we wanted to go to the bucs game and sit with her in her club seats. Of course I had to turn her down because I COULD NOT WALK!!!This has happened before but it has never been this bad. I went to the doctor but I think I need the chiropractor! I can at least walk today.
I went to visit Nicole after she had the baby (Lexi)and she is just adorable, Mike is doing very well himself.
I still have some calendars from the Childrens Cancer Center so if you live close you can get one from me.
I also got to see Christina Gates, when I went to the children's cancer center to pick up more calendars her family stopped in. So I tried to give her some encouraging words because she was tired of taking all her pills and did not want to take them any more. She looks good, of course she has lost alot of weight but I told her she has to hang in there and Taylor was going to be watching over her. So she better take her pills.
I had lunch with Silvia (she lost her daughter Jillian 2 years ago) with the same monster that took Taylor. She now has a new baby girl about 8 months old. We got to talk about several things and she also gave me some advice and what worked best for her when it came to mouring the loss of a child. Both our girls knew each other and spent alot of time in the hospital together. I was never able to tell Taylor that Jillian died but now they are together once again!
I can't even imagine what this christmas is going to be like I just wish we could skip the holidays. I know I have to put up a tree for Landon so we decided that we will only put angels on our tree this year and Landon thought that would be a good idea.
Thank you all for keeping us in your prayers!
Love Angie
Tuesday, October 14, 2003 8:50 PM CDT
Hello,
Yesterday I was not having a very good day and it was not until later that I realized it was exactly three months ago that Taylor became an angel.
Jeff was out of town and I was just feeling very sad, I always think of Taylor but lately it had been every second of every minute and I missed her so much. I had a hard time today, I went to the store and bought some flowers for Taylor and ran into a friend and as soon as she asked me what I was doing I just started crying, I have had several moments at Publix now, they must think I am a nut. I try not to cry in public, I do most of that when I am by myself. I don't care if I do but I try to be strong, because so many think I am.
I took some pictures of Taylor's stone so take a look, they still have to scrape the glue off(they had to let it dry first)so that is the ring around her picture.
In the picture of Taylor's stone there is a beautiful red jar with a cross on the top and it holds a candle and I want to thank the grandma who left it!! She seen me visiting Taylor one day and came over to make sure I was alright and she left a very nice note to Taylor and she signed it from "a grandma"
I am still having a hard time putting up any Halloween decorations, I have so much stuff it would take me a few hours to put it all up and Taylor would always help me. Landon asked me when I am going to get the decorations out, but my heart aches every time I think about it. I thought things were starting to get better but they are not. Now that all the holidays are coming I just want to dig a hole and hide inside. All the pain is coming back again as if it happend yesterday.
Landon has soccer practice every tuesday, friday and soon to be saturdays. I think he is really going to enjoy that, it also wears off some of his energy!!
We are also opening up our own business!! It is a franchise (dealership) and it is called Performance Off Road of Tampa. We will be selling and installing parts for trucks, SUV's and Jeeps. Anything that you could possibly add to your vehicle we can get. I think the main thing will be lifts, wheels, rims, spray-on bedliners, ext.
This all happened very fast and everything just fell into place so I truely think it was meant to be. My brother Wendell is the one who was going to open up this business and he did the research and met with the owner and before you know it we are opening a store. It is very scary and exciting at the same time, and from what we been through we just have to try this!
It is located at 412 W. Waters ave in Tampa. If you live in the area stop and check us out!!!!!
Thank You for keeping us and all the families that cancer has affected in your prayers!!
Love Angie
Wednesday, October 1, 2003 9:57 PM CDT
Hello,
Four years ago today our beautiful little angel was diagnosed with this monster of a disease. I thought that was the worst day of my life, What little did I know then-the worst was yet to come.
I still remember that day as if it were yesterday, I will never forget when Taylor had her CT scan and the radiologists were in the next room and I could see them through a window. I noticed that the room started filling up with doctors and I started getting scared but when I saw the hospital chaplin enter the room my heart started pounding and at that moment I knew I was about to hear the worst news a parent could hear. After all the test were over that day (it was a friday) they told us to go home and come back on Monday to have her mediport put in and then start chemo. I remember driving home from St. Pete and I kept thinking how could have this happened, I kepted praying to God PLEASE DON'T TAKE MY LITTLE GIRL, I WOULD NOT BE ABLE TO HANDLE THAT! God gave us almost 4 more years to be with her and during that four years it made us two very strong parents, so strong that he was ready to take her to heaven.
I still feel very robbed that I did not get to see her grow up, but I do feel very honored to have had her in my life!
The Childrens Cancer Center held their annual fundraiser that consists of Holiday cards, notecards and a calendar. All of these are drawings by a child with cancer or their siblings. Taylor had two pictures that were chosen for the calendar (Feb. & March) The pictures were chosen before Taylor passed. If you would like a calendar or any of the other items you can order them from the web site
www.childrenscancercenter.org or if you let me know I have several calendars on hand. All proceeds go directly to the center, they are $12.84 (with tax)
I will update again soon and I will put a picture of Taylors headstone on here because so many can not see it (still no picture yet)
Love, Angie
Friday, September 19, 2003 7:28 AM CDT
Hello,
I wanted to let everyone know that Taylor's headstone is in and it looks beautiful!! The picture is not in yet and they said it could take a few more weeks so once that is in I will take a picture and put it on the web page so everyone can see it.
Living our lives without Taylor is still very difficult we just take one day at a time. It has been over two months now and going to bed at night it starting to get a tiny bit better. My heart still breaks but I also feel at ease in a way I can't describe. The pain will always be there but I am starting to understand a little of what Gods plan my be.
I try to imagine what good could possibly come out of this and I am sure I will have to wait until the day I am reunited with Taylor and then I will find all the answers.
It was our wedding anniversary on tuesday (14 years) and we went out for dinner, we know that nothing can come between us now because of what we have been through and we are closer now than ever before!
I went to the hospital on wednesday for the first time to visit Christina, It was a little hard to walk in and see alot of the nurses and staff that I knew. They all asked how we were doing. My heart went out for Christina and her family because I know what they are going though. Christina is going through a rough time right now, she is fighting off infections and is still very sick. I know now that helping other families that are going through this is what I need to do, we made friends with several families and I would love to be there for them.
Landon is doing good he likes school and he loves to socialize, a little to much because he still gets into some trouble for talking.
Jeff is doing good he is starting to travel a little more now, he will still only be gone for one night at a time.
Love to you all!
Angie, Jeff, Landon & Angel Taylor
Thursday, September 4, 2003 6:45 PM CDT
HAPPY BIRTHDAY TO MY DEAR ANGEL TAYLOR
Today was 10 times harder than what I thought, after Landon went to school I went to visit Taylors grave. It was raining today so I brought my blanket and umbrella and had my very special moment with her, I did have several friends that wanted to come with me but this was something I had to do alone. Once I got there I just did not want to leave, I still could not believe that I was sitting by my childs grave. I kepted thinking that Taylor was just too perfect to be in this world and God knew his plan from day one! I thought about many things as I sat there and cried,talked and even smiled as I remembered what a beautiful child I had given birth to. I went home and by this time Jeff was getting home from work and then he went to visit the grave. Jeff's sister Lisa came up from Naples and we went into Taylors bedroom and looked threw her stuff (she has alot) I found a notebook that she wrote in and I was a little shaken when we came across this she was writing poems and one of them read: " I am an angel, I am sweet. Can you be sweet to, like an angel." I am guessing she had to have wrote this sometime in March or April. I found many things I had not seen before and I will cherish every thing she ever did!
After Landon got home from school we brought him over and he wanted to bring balloons and he tied two rings on them and then released them so Taylor would get the rings in heaven.
I want to thank everyone for all the thoughts and prayers and if you could also kept in your prayers Brittany Zipters family she passed away on September 2, she was 11 years old and her viewing was today and tomorrow and her funeral will be on saturday. Her mom Patty will really need your prayers for she relapsed herself with breast cancer.
Her web page is www.caringbridge.org/fl/brittanyzipter
God Bless, Love,
Angie
Friday, August 22, 2003 10:08 AM CDT
Hello,
I added a few new pictures if you would like to look!
We finally made it back to church on sunday and it was very hard, I think me and Jeff spent most of the time crying. We have always been more emotional in church and we tried very hard to hold back the tears, but they just kept coming.
This week has been hard just because we are back on a normal routine and reality has hit!! I went to the grocery store the other day and would see some of Taylors favorite foods and the tears just starting coming, then I would make myself stop and then I ran into somebody I knew and I tried not to get emotional again. We talked for a while and I did Ok but once I got to the check out I started crying again and I'm sure they did not have a clue what was wrong, I just tried to get out of the store as fast as I could.
Every day is getting to be a challenge, I think about Taylor every minute and I have talked to a few people (who have lost a child) and I really don't find much comfort in talking, I do realize that I have to get threw this on my own. I think Jeff feels the same. Having people tell us "well she is in a better place now" or "she is not in pain anymore" I just have to tell you THIS DOES NOT HELP.
No words can make us feel any better, but I can tell you that just knowing how many lives Taylor had touched and knowing that peolple are still praying for us - that helps!
We are still trying to stay busy, I think if I don't I could find myself becoming a hermit and not ever wanting to leave the house. We are going to dinner tonight with some friends and the rest of the weekend we will try and stay busy.
We signed Landon up for soccer and that starts Oct. 1.
Please keep in your prayers ours friends Britany(who is going threw a difficult time) and Christina (she is going in on monday for her bonemarrow transplant)
Thank you for keeping us in your thoughts and prayers!
God Bless,
Angie, Jeff, Landon & Angel Taylor
Thursday, August 14, 2003 6:25 PM CDT
Hello,
Yesterday was one month that Taylor turned into one of Gods angel's and it was a little difficult and really hard at night because Jeff was gone. He had to go out of town for work. Tuesday was my birthday and my friend Beth took me out shopping and then that night, My brother Wendell treated us to dinner.
We have been staying very busy during the day, Landon is having fun at school (I think too much fun because he is to busy talking to pay attention to his teacher) I have been finding many things to do to keep me busy, and next week I will start volunteering at the school.
The first day of school was hard, I went home and cleaned my house, and talked on the phone all day. We truely have some great friends because they are always calling so we don't have much time to think,(other than going to bed!)
Last weekend we spent it back at the beach, some friends let us use a beach house, it rained alot but that did not bother Landon, he fished in the rain. Some friends came to visit us there and we had a good time.
Friday night we watched the Bucs play at Mike Alstotts house, he of course, was not there but Nicole and a few other friend were.
We finally picked out the perfect headstone for Taylor and it will take 30-60 days to get it. I will let everyone know when it comes in so you can go see it.
The days are getting easier to handle but the nights are another story, I find myself looking into the future and Taylor is not in it, so I just try to remember all the fun we did have while she was here, but it is still hard and I'm sure it will always be.
We did go to The Children's Cancer center on sunday they had a memorial Balloon release for all the families that have lost a child. We did talk with several other families and they had a guest talk to all of us. It was very nice and they have these gatherings about 2-3 times a year. We did talk to a few that lost their child 5-6 years ago and the pain is still there, it just gets a little easier to cope with.
I will try to update a few pictures soon!
Thank you all for being there for us!
God Bless,
Angie
Monday, August 4, 2003 1:07 PM CDT
Hello,
I will still write in this journal because I know alot of people want to know how we are doing. We have been trying to stay busy and now things are starting to slow down and life is getting very hard!
We did go to Orlando last weekend and had a good time, we brought cousin Matt with us so Landon had someone to hang out with. We went to Universal Studios on friday then saturday morning we went and watched the Bucs practice in Orlando. Nicole Alstott got us passes to sit in the family tent with her so we were able to see all the players up close. We stayed until practice was over and then Mike and Nicole asked us if we wanted to go to Disney with them, (they had a guided tour so they did not have to wait in any lines) we gladly accepted and had a great time. It was funny to watch how people reacted when they realized Mike Alstott was walking around Disney World. I was even asked if I was Mike's wife and if they could take a picture of Mike.
I want to thank everyone again for all the support and love
that we have been getting, without friends life would be even harder to handle right now.
We have been going out with friends and we have a good time but then we have to come home and that is when everything seems so empty. It is still so hard to believe that Taylor is gone and she will not be coming back. We are trying to take one day at a time and only think of all the good things that Taylor left us with, it is still very hard for me to walk in her room but I love to go in and look at all her stuff.
Landon is so bored he is always looking for someone to play with, he would go fishing 24/7 if we let him. Jeff has been back to work and I have been trying to catch up on everything that I am behind in. I think he is ready for school to start next week,I am not ready though!
Thank you for your continued prayers!
Love Angie
Thursday, July 24, 2003 7:28 AM CDT
Hello,
I don't know where to begin! It has been 11 days now and I miss Taylor so much it is not getting easier it is only getting harder. During the past week we were busy with friends and family and we did not have much to to sit and think, we left sunday after all our family went back to MN and we stayed with some friends at a house on Treasure Island. We got back yesterday morning and then said good bye to Jeff's mom and dad who were driving back to MN.
Last night was the first night we have been alone and I know we needed some time to ourselves but I also know that life will never be the same. It is a parents worst nightmare
to lose a child and you will never feel the pain that we feel in our hearts unless it happens to you. Going to bed and waking up in the morning are the hardest part of the day, I go to bed feeling very lonely and think how are we going to live life without Taylor we are never going to see her grow into a beautiful young lady, I am going to miss her first prom, seeing her get married, having kids of her own. I wake up every morning and it feels like I have a huge hole in my heart and I don't think that feeling will ever go away. We are trying to be strong and I know we can get threw this with the help of God, family and friends.
I am going to keep her room just like it is because when I go in there I feel very close to her, I love to look at all the pictures she colored and hold close in my arms all her favorite things.
Landon is doing ok he has been busy as well so he has not had too much time to think either, he has had a few break downs and said he misses Taylor and wished that God would give her one more chance and make Taylor come back to life. He now understands that will not happen and we heard him tell some friends that when they asked him if he missed Taylor he said " yes I miss her but she will always be in my heart!"
We do have the best friends in the world, everyone has been so kind and thoughtful we will never be able to thank them enough. It does make things a little easier knowing how many people really care and want to be there for us.
If you were not at the funeral home or church service they were both beautiful, I do have to a poem that was read at the wake and I will tell you the story behind this. Our neighbor (Darrin Pasquino) who is a fireman,EMS, was one af the men who responded to the 911 call on saturday morning July 12. He was truly touched when the call came in and even though another EMS had responded he told his boss he was taking this call. He told Taylor that they were going to take good care of her (and they did). Monday when Darrin went back to work he said he picked up a pen and paper and these words just came to him.
AN ANGEL'S MESSAGE ON 7/14/03
To you Mom and Dad, and my little brother too
I feel great here, as I wait for you
I have all my hair now, Don't have to lose it no more
I can run, jump and play, without a body that's sore
Daddy I'm not scared now,Since I have found my way
I sure was last night, but not today
You all took good care of me,like you always do
But now from here, I will take care of you
See I know now,from what I can see
I can be with you all, even if you can't see me
I will be there, each and every day
Remembering your love, nothing took that away
If you need a sign, to know this is true
The sign is the ink here, that will be given to you
So enjoy all the life, day after day
Knowing your daughter Taylor,wants it that way
Mom and Dad be strong for me, just like I was for you
Take good care of Landon, he will need you too.
The Children's Cancer Center is giving us a weekend in Orlando, we leave tomorrow morning and will come back sunday. We might go to one of the parks and we will also watch the Bucs practice football, Nicole (Mike Alstott's wife) will let us sit with her in the VIP tent, Landon and her son get along good.
When we get back next week we will have to pick out a tombstone for her! We have several idea's in mind so now it will just be putting them all together so it will be perfect.
Thank you all so much for just being there for us!
If you wanted to donate to a charity in memory of Taylor we would like it to go to:
The Children Cancer Center
4901 West Cypress street
Tampa, Fl 33607 (813)369-5437
or
The Natonal Children's Cancer Society
1015 Locust St. Suite 600
St. Louis, Mo 63101 (314)241-1600
or
CaringBridge.com
Thank you all for the cards, food, flowers, gifts and for being there for us. God Bless you all!
Love Angie
Monday, July 14, 2003 1:06 AM CDT
Sunday 10:10pm
God came and took Taylor to heaven, she is now one of his angels!!
She died peacefully at home surrounded by family and friends.
I never thought that this would happen, I just don't know what to do without her. I did get to rock with her for 2 and a half hours after she died and that was very important to me!
I will write more later!
To all the angels in heaven-God bless you all!
Love Angie
Viewing will be from 6-8pm Wed. July 16,
Loyless Funeral Home 813-996-6610
5310 Land O Lakes Blvd (Hyw 41)
Funeral Services will be Thursday July 17, at 2:00pm
Our Lady of the Rosary Catholic Church
2348 Collier Parkway
Land O Lakes, Fl 34639
813-949-4565
Our address is
23205 Saint George Pl.
Land O Lakes, FL 34639
Saturday, July 12, 2003 5:35 PM CDT
I Just wanted to let everyone know that Taylor has taken a turn for the worst, we called the ambulance this morning because she was having a seizure, they brought her to a near by hospital and then released her so we could go home.
We are home now and she has had two more milder seizures since.
We called family and they are with us now, if anyone would like to stop in for a quick visit that would be OK.
I think God is calling for her.
Pray for a miracle!!
love Angie
Thursday, July 10, 2003 7:58 AM CDT
Hello,
We get to go home today !! They will finish her chemo and then give her platelets and then we can check out!!! It will be late afternoon before all of this happens and Taylor is so ready to leave. Her pain is all gone and even her headache is gone. Taylor still has to stay on the pain patch for at least a week just so we can slowly take her off it (they don't want her having withdrawls). We will continue to give her fluids at night because she still is not eating very much. We will have to be back at the clinic on monday and I'm sure she will be needing more platelets. Todays platelets will be coming from Charlene (thank you).
Yesterday Grandma stayed with Taylor most of the day, and they had a few visitors. Christina and her family stopped by and so did Auntie Cathy, Jenny and Bryan. Tuesday Nicole came by again and she brought Taylor 3 coloring books, crayons and some candy.
Taylor is still going to need alot of transfusions because her bonemarrow had not completely recovered from the Philly treatment and now the chemo will be knocking it down. We have not noticed a change from her receiving the stem cells back so I don't think it was much of a rescue.
She still is not able to walk very good so they think she might need some physical therapy, I am not sure if the tumor damaged any of her muscles or if they are just week.
She really wants to be running with her friends again!
We can only pray that the chemo will continue to work and buy us time to find a new treatment!!!
Thank you so much for all the prayers!!
God Bless, Angie
Tuesday, July 8, 2003 7:08 AM CDT
Hello,
We started chemo on sunday and yesterday she was feeling very nausious she held a "puke bucket" under her mouth for most of the morning and then after she tried eating a few bites for dinner she felt sick again. She never did throw up. She has not been complaining about her legs so the pain is finally starting to go away, we had them decrease her pain medication yesterday, and will decrease it more today.
Today is also the last day for radiation. She started eating a little bit more on sunday, and she tries to eat now but the chemo is affecting that. Then yesterday she said her head really hurt and that it was hurting more than her legs, today it still hurts. They still have her on TPN at night so she is getting enough nutrients from that.
She doesn't need oxygen anymore and she was able to stand up on her own. She looks so much better and she is feeling alot better. She still doesn't like to talk much but we are working on that.
Jeff and I both have been spending the nights and it makes things a little easier. Grandma, Grandpa and Dakota stayed with Taylor for a few hours yesterday while we went home and showered and got more clothes. I mowed the yard and Jeff ran a few errands with Landon. Then came back here and Taylor decided she wanted to color and paint.
She has had a few visitors like Emily, her mom and sisters and they brought her a few things to color on along with two kitty folders and some skittles. Rachelle and Steve and they brought beads, uno cards and a care bear.
Nicole Alstott even came by again to see how taylor was feeling and was going to stop back in today with more things to do. Stephanie and Jenny from child life have been bringing her things to do and Stephanie can always make Taylor feel better. Thanks to all of you for making Taylor feel very loved!!!!
Thank you for the prayers and support!!
God Bless,
Love Angie
Sunday, July 6, 2003 9:10 AM CDT
Hello,
We are in the hospital and Taylor's fever broke yesterday afternoon, they put her on an antibiotic and a steroid (her leg was still very swollen and the steroid helps with that).
The also put her on fentynol(for pain) thru IV and of course that was making her heart rate drop so she had to be on oxygen and she didn't like that. Her potassium and sodium were off so they are trying to get that back to normal.
Grandpa and grandma made it down just in time, they came to visit yesterday and brought Dakota(cousin from MN) Taylor was happy to see them!
Jeff and I both wanted to stay with Taylor so they brought Landon over to Cathy & Steves with them. I think we are going to start chemo today, it has been about 4 months since she had chemo so pray she does not get sick. This time we may have to stay in the hospital for chemo, last time we went to the clinic and went home and we gave her IV fluids at night. She doesn't like being in here and she is very upset that she will be losing the little bit of hair she does have.
Now we just have to pray that the chemo will still work on her tumors!!
Thank you for your prayers!
God Bless, Angie
Friday, July 4, 2003 10:08 AM CDT
Saturday, July 5, 9:00 AM
Taylor's fever went over 103 so Jeff brought her to the hospital at 3:00 this morning. They will start an antibiotic and she also needs blood and platelets. Taylor did get to see fireworks last night and I think she enjoyed them!
Happy 4th of july!
Taylor is not feeling any better and I don't feel that great myself. Taylor needed platelets yesterday so we went to the clinic in the morning and got them and then we drove over to St. Pete again for radiation. Jeff had to leave for work early so I had to wake both of them up and out the door at 8:00 am. Landon is now use to sleeping in until 9:30 and Taylor is just hard to move anytime.We dropped Landon off at a friend of ours (Beth) she was having a few kids over to play so Landon had fun. Picked Landon up on the way home and when I got home and sat down within an hour I felt terrible and was running a fever myself.
Taylor is still running a fever and I called the doctor and she told us to give her tylenol (in most cases this in not allowed) but since she has been having fevers for over a week on and off it is very likely that it is from the tumor. If it get to high (over 102) then we will have to go to the hospital. They know how much Taylor hates going in so we are trying to stay away from that.
She has lost alot of weight and she was in so much pain yesterday that they did not even want to make her stand up to be weighed. They did put her on TPN which is fluids with all the nutrients she needs in it. We have a pump at home so for 12 hours at night she is hooked up to the pump. Both Jeff and I could be nurses ourselves because we know how to do just about everything.
We are still hoping to go over to some friends of ours for a few hours and maybe that will perk Taylor up a little bit, everyone bought fireworks and Taylor loves to watch them so we are praying she will feel like watching them.
Yesterday the doctor did bring up the "what if" and I told her right now I don't want to go there because our hope is not gone yet. She agreed with me and said we will start chemo on Monday.
Thank you all for your continued prayers!!!!
God Bless,
Angie
Wednesday, July 2, 2003 10:14 PM CDT
Hello,
I am going to make this quick, right now we are watching Taylor because she is running another fever.
She is getting very tired from the radiation, today they told us she will have a total of 8 days and then evaluate her to see if she needs anymore. The pain is still there and she still cannot walk, she can crawl very slowly.
I know she is getting week because she doen't eat very much so we just try to push liquids, she is losing weight again.
We found out today that we can't go to NY because she is still HAMA positive, and the doctors think we need to start chemo on monday but all that depends on her blood counts.
Chemo would help with the pain but she may not be ready for it yet.
She is still very sad and doesn't like to talk to much, one of her pre-school teachers (Miss Judy) came to see her today and even brought her presents and she did not say to much.
Jeff's mom and dad are coming down from Minnesota for a couple weeks so hopefully that will perk her up a little and Jeff and I are hoping to get away for a day or two.
We did go to the clinic before radiation today and Taylor needs more platelets again, so we will be at the clinic early in the morning and then drive over to St. Pete for her radiation.
Please keep Taylor in you prayers!!!!
Thanks, Angie
Monday, June 30, 2003 7:27 PM CDT
Hello,
Taylor had a very mellow weekend, she pretty much laid in bed or on the couch all day. She still is not able to walk but the pain is very slowly going away because she is not asking for as much pain medicine. Jeff's sister and family (Barb,Karl, Kyle and Tanner) came to visit saturday and sunday Auntie Lisa came over. Taylor did not want to do much she played cards once and other than that she just watched. She is just not herself yet she seems very sad so we are trying to get her back to her happy self again.
Today I took her to the clinic in tampa and after discovering that she needed blood and platelets again we had to drive over to the hospital. Taylors radiation is scheduled for 2:30 everyday so we checked into a room and got platelets then we had to stroll over to the neighboring hospital to get radiation then back to All Childrens to get blood. Jeff came to relieve me at 2:00 and they did not make it back home until 8:00. That was a very long day for Taylor.
We are trying to go to New York again and get into another clinical trial,so we will know by the end of the week if she is eligible. We may start chemo again next week if her blood counts start improving. She received her stem cells last wednesday and hopefully they will start producing again!!
Please keep praying!!!!
Love Angie
Friday, June 27, 2003 5:36 PM CDT
Hello,
Taylor is home!!! She is still in pain but I think it is getting better. She has had two days of radiation so hopefully by morning her pain will be a little less. We noticed a small change from just one treatment and they increased the dose of radiation and will continue to do that everyday. Taylor sleeps alot and her cat Sweetheart always comes by her and makes sure she is OK.
Landon went to Kite Camp thursday and friday it is put on by
the Childrens Cancer Center, he had alot of fun. They went swimming thursday and today they went to Lowry Park Zoo along with many other fun things!
We have such great friends, Rachelle brought us dinner last night and today Susan brought us dinner,THANK YOU!!!
Thank you all for the prayers and support!!!!
Love Angie
Wednesday, June 25, 2003 9:22 PM CDT
Hello,
Taylor's fever went away shortly after we got to the hospital last night, but her pain did not. They started her on an antibiotic and morphine thru her IV. She is very heavily sedated and she only wakes up for a few minutes at a time. She received her stem cells back today with no problems! The biggest problem today was getting Taylor out of bed to go to the bathroom and to go upstairs to get her bone scan. She is in so much pain when she moves it is hard to watch her, she is very independent and wants to do everything by herself. She cannot standup by herself she needs to hang onto something so we moved a portable toilet next to her bed and she moves with her arms, she is in so much pain and she is determined to go to the bathroom by herself!! She did not eat anything today and she looks really week, her eyes look sunken in with dark circles under them and her lips are dry and cracked. She likes to pick and scratch herself when she is on morphine and thats why her lips look so bad she will not stop picking.
Her bone scan showed she has more new tumors in her bones, there is a tumor growing very rapidly on her left upper leg, (it was not there 3 weeks ago) and it looks like another one is starting in the same place on her right leg. It is questionable about a spot on her arm (she has not complained about it) and then there could be some spots on her ribs. We are starting radiation tomorrow just on the spots on her legs. Hopefully that will start to give her some relief.
Taylor talked in her sleep several times and I would always listen to what she is thinking about and everything seemed to be happy thoughts. She would be talking to her friends and they would be doing something fun. She would also wake up after talking and realize that she was just dreaming and then get very upset that it was only a dream. The one time she thought she was at camp and she just cried when she realized that she was in a hospital bed. It breaks my heart to see her like this and there is nothing I can do to help her. I told her today to go back to sleep and just pretend that she is with her friends having fun.
Jeff flew home from Atlanta today and Steve picked him up with Landon and then they went home, got the truck and came to the hospital. I will go back to the hospital tomorrow and Landon wants to go to camp at the childrens cancer center, Taylor wanted to go to camp so I don't even have the heart to tell her she is missing it.
We think she will be able to come home on friday after radiation so please keep her in your prayers that the pain goes away.
It means so much to us that you continue to pray for Taylor, so thank you!!
Love Angie
Monday, June 23, 2003 7:37 PM CDT
Tuesday, June 24 7:15 pm.
I just wanted to update and let everyone know Taylor has a fever and we are checking into the hospital tonight.
Hello,
Taylor's pain is getting worse and she is now on heavy pain medicaton. We went to the clinic on friday and they gave her morphine while we were there and we also had an x-ray done of her leg. There is something there and more than likely it is another tumor, she will be getting another bone scan on wednesday along with getting her stem cells back. We are also going to be setting up radiation so that should help with the pain. She still is not strong enough for chemo so right now radiation is the only thing to do.
Jeff had to go to Atlanta yesterday for work and will not be home until wednesday night, Landon is over at Cathy and Steve's and they are going to bring him home tomorrow. So right now it is just me and Taylor. We spent the whole day at the clinic, getting blood and platelets and they tried doing her bonemarrow biopsies but Taylor was is too much pain. She was very heavily sedated but she could still feel it so I told the doctor to stop and we will have to get it done at the hospital when they can totally put her under anestesia.
Taylor has not been able to walk at all so on friday we had a wheelchair delivered to the house. She spends most of the day sleeping and now we are having a hard time getting her to eat again.
Please keep Taylor and our family in your prayers!!!
Love Angie
Thursday, June 19, 2003 11:26 AM CDT
Hello Everyone!
I am back from camp, I had a good time. My most favorite thing to do was go to the wood shop, I made my dad a something for fathers day, It was wood shaped like a heart and I etched in the wood with a wood burner some sea horses and fish and then I painted it. For mom I did the same thing and wrote I love Mom on it. For Landon I made a wood fish and pianted it with sparkles. I also made my own soap box car and raced it! I went swimming and went on a paddle boat, I went fishing and almost caught two fish but they came off the hook. We threw marshmellows at one of the counselors and had squirt gun fights with all the cabins.
I did not like most of the food so I ate alot of cereal, bananas and popsicles.I slepted on the top bunk and liked that. I did not like to be out in the heat so I did alot of things that were indoors. I made some new friends Bailee, Kristen and Cici, I liked all the girls in my cabin there was 8 of us. We all got a hand made afghan and a teddy bear, two tee shirts and a water bottle and a few other little things. Everyone was so nice, alot of the kids put on a play but I just wanted to watch. I told mom I want to go back to camp next year!!!
Thank you for praying for me!!
Love Taylor
Hello,
I was so excited to pick up Taylor on Tuesday morning I think I was the first person there. I just could not wait to see her, when I got there I had to stand outside and they went into the cafeteria to get her (where all the kids were, dancing a having a good time) When I first seen her I could have cried, she looked tired and she was really limping. I asked her if her leg hurt and she said no. I just wanted to keep huging and kissing her. She told me that they gave her tylenol because her leg hurt. I think that they might have thought the pain was from the shots in her legs that they had to give her. I just wished they would hav told me!!! Taylor was very tired when we got home she took a nap. Her leg started really hurting and I gave her soem codeine. Wednesday when I brought her into the clinic she had to get more platelets and when we came back later in the afternoon to get them the pain really got worse and they gave her morphine while we were there. When we got home she just layed around and last night I was watching her fever she was just under 101 and anything above that we have to go into the hospital. I would wake up and feel her all night long and she never got above 101. Jeff was out of town so he was worried about not being home. This morning is better she no longr has a fever and the pain is not too bad right now.
I am trying to hurry because Taylor wants me to make her french toast!!!
Thanks for all the prayer!!!!!
Love Angie
Monday, June 16, 2003 1:52 PM CDT
Hello Everyone!,
Taylor is still at camp! The last day is tomorrow and I will pick her up at 9:30 am. I wanted to pick her up today but they do not want me to. Taylor did need blood and platelets friday so Jeff picked her up early friday morning and by the time he got her back to camp it was 7:40 pm. It is about an hour and 45 minutes each way. They had to check her blood at camp on thursday and they could not use her mediport or her finger so they had to draw blood from a vein in her hand, I did not like that and I'm sure Taylor did not like it either. Then they had to do it again on sunday, but her counts are good and we are hoping we won't need to put in her stem cells. We had it scheduled for wednesday and we will delay that until we check her counts again on weds. if she still needs them then she will get them on friday.
I had a good weekend in Orlando but once I got home on sunday I wanted Taylor here, they told me she is having fun and has made alot of new friends. I can't wait to pick her up tomorrow!!!!
We will let you know how camp was and hopfully Taylor took alot of pictures to show everyone!!!!
Thanks for the prayers!!!!
The MIBG Scan showed Taylor still has disease but everything looks like it improved she has some areas that lit up. I will fill you in more when I get the report back!!!
Love Angie
Tuesday, June 10, 2003 7:51 AM CDT
Hello,
Taylor has still been getting transfusion all the time she needed blood and platelets friday and yesterday she needed more platelets. We are going to put her stem cells back in sometime next week, so the only bad part about that is we will not be able to get another treatment in Philly. We still do not have all the results back and we are waiting for the MIBG scan results that is the test that will tell us the most. Her CT scan was good and so was the MRI of her brain. It showed that no new tumors have developed. The bone scan they could tell just a little change (for the better) and the MIBG should pick up more on her tumors and we should be able to tell a difference. The pain in her legs have improved and so has her hip bone, I think it was just bruised. She still walks a little funny and says her legs just hurt a little bit.
My sister and two brothers are here to visit and then we will go to my brothers convention in Orlando on Thursday. Taylor is going to go to a camp that is just for cancer kids and that starts tomorrow it is called Boggy Creek Camp.
We will go to the clinic in the morning to check her counts and if she is good Taylor wanted to go and it is north of Orlando so she will be about 2 hours away. The camp starts tomorrow and ends next tuesday, and I am not able to talk to her during that time. But I know she will need platelets on Monday again and maybe blood so I think I might just have to pick her up sunday night. Unless she is having so much fun and doesn't want to come home they would bring her to a hospital in Orlando and get a transfusion there.
I am a little nervous about sending her but this place is fully staffed with doctors and nurses and she really wants to go. She would be gone for 7 days and I can't talk to her, I can call and talk to the staff but not her!!
Today she went to a Bible camp (even though auntie Tracy is here)she just had to go, she went to this one the last two years and it is her favorite one.
I will put in a short update if I find out the results of her MIBG scan.
Thanks for the prayers and support!!
Love Angie
Monday, June 2, 2003 8:45 PM CDT
Hello,
Taylor has been needing alot of transfusions! Wednesday she needed to get blood and platelets they were both at a record low for her. Platelets were 2 and blood was 5.7 she then had to get more platelets at the hospital friday and then today she needed platelets. Her ANC has been at 0 for the past week, (no white blood cells) and then last night she started saying that the back of her legs hurt and I am just so sick of the thought that it could be her cancer. She did fall on her butt yesterday and we are just praying that is why she hurts.
Friday she did get her CT scan and a bone scan (we don't know anything yet) then that night we went to the new movie "Finding Nemo" very good movie!!
Saturday we went out on the boat and played at the beach all day (Andrea's family came with us)
Sunday we went to the Children's Cancer Center and the dad's and kids stayed at the center and cooked on the grill and they kids did arts and crafts and a magician came and made them all hats made from balloons. Then the moms all went to the International Mall and was treated to lunch, a facial, make-up, hair washed and styled, manicure and pedicure. It was wonderful so we just have to thank the Childrens Cancer center(Sharin and MaryAnn) and Sharon Yerrid fot the wonderful afternoon!!!!
We pretty much spent all day at the clinic, we were there at 8:45 and after a finger poke we new platelets were needed so we were told to come back at 1:30 so when we returned ready to get the platelets they were not ordered so we had to come back at 3:30 and they finally arrived at 4:00. We have to thank Scott Hall for donating his platelets for Taylor!!!
Tomorrow we have to go to the hospital to get an injection for an MIBG scan. Wednesday she has the first part of the MIBG and a MRI and Thursday she will get the second part of the MIBG scan. We had to cancel her bone marrows test because her platelets are just too low, we will do them in a few weeks.
They doctors will also decide when to put her stem cells back in because her bone marrow is just not recovering on its own.
As soon as we get any of the results from her test back I will let you all know. Please keep praying that the pain in her leg goes away!!!
Please visit the web page below and be a part of a "quilt of love" for Taylor or another child!!!!
God Bless, Love Angie
Tuesday, May 27, 2003 7:38 PM CDT
Hello,
I am happy to say we have been very busy and Taylor has been feeling great. Thursday she did make it to beach day at school and they had lots of fun games to play, she lasted until 12:00 and then I checked both of the kids out since the afternnon they were only going to be watching movies. We also checked out Madison and she came home with us.
Friday Taylor had to get more platelets so Jeff brought her to the clinic early and I met them at school (it was awards day)They got there just in time for Taylor to get her award and it was for "Outstanding Effort" and Landon got one for "Science". We all went home after the awards and packed our bags for the weekend. Landon went to Auntie Cathy and Steve's house and Taylor we dropped her off at St. Pete beach to stay with Andrea and her family. Jeff and I then went down to Boca Grande and stayed with Troy (Jeff's boss, he rents a house there for two months, for fishing charter's) The tournament I was in saturday morning started at 8:00 and was over at 11:00. I was fishing with two other ladies and we did have some excitment, Jill (Troy's wife) was the first women to hook a fish and she fought it for about 10 minutes and then lost it. Then at 10:54 I hooked the grand daddy of all fish (it felt that way) we had until 11:30 to boat this fish. I fought him until my arm was so sore and limp then I had to hand the pole to Laura and she fought it until she could not fight anymore then handed it to Jill. This fish was so big we did not even get to see him, we only had about 10 minutes left to get him to the boat and he kepted taking line so we had to tighten the drag and then finally he pulled the hook. It was so exciting, if we would have won first place the three of us would have been splitting almost $20,000. Not bad for a fun day of fishing!!!!
After that we drove back to St.Pete and stayed there with Andrea's family until saturday night and then drove home. Taylor wanted to stay but I did not want to push it she had been very busy playing in the pool and at the beach.
Sunday morning we picked up Landon and then went to another friends house (MaryAnn & Michael) for a cook out-pool party, so of course Taylor invited Madi along and we stayed until the fireworks. Madi stayed and spent the night then in the morning she went to Madi house for a few hours. Then we went to our clubhouse because they were having a cook out-pool party with a DJ. We all had fun and Taylor had more energy than I thought she would. After the party we came home and Andrea spent the night. Taylor has been eating (alot) and I'm sure she is close to getting back all of the weight she lost.
We did have to go to the clinic this morning and I knew her platelets would be low and I thought her blood would be good but to my surprise they were both low (very low) her platelets were 10 (normal 150-450) and her blood was 6.8(normal 11.5-14.5) so we were instructed to go home and be very careful and don't do anything. So we had to drop Andrea off at home(she came with us to the clinic) and
Taylor colored and watched TV all day. Her ANC is still very low 200, (anything under 500 means her immune system is very week) Tommorrow is the last day of school, Taylor was a little disappointed about not being able to say goodbye to all of her friends. I'm sure we will see alot of them over the summer.
We start testing again on friday, she has a bone scan and a CT scan and then she has something everyday next week so after this is over we will find out just how much the treatment in Phily worked!
Pray very hard for good results!!!!
God Bless,
Love, Angie
Wednesday, May 21, 2003 2:47 PM CDT
Hello,
Taylor's eye infection is getting better,her skinned up knee still hurts but she now has white blood cells again so hopefully that will start healing itself. I forgot to tell you about another bruise that she got over the weekend,Kyle and Tanner's dog Baxter bit her on the butt. He did not break the skin but he sure left a nice size bruise. Taylor's platelets today were only at 35 so Jeff went and donated his platelets so Taylor will get them on friday.
I am very happy to say that her eating has really picked up and she has gained back 2 pounds. She is feeling well enough and will be able to go to beach day tomorrow at school, she is very happy about that.
Last night we went to her end of the year girl scout party, they had pizza and lots of food, we only stayed for about 45 minutes because her eye was still hurting. But I think Taylor was eating the whole time we were there! We are going to keep her on the megace until she gains back all the weight she lost. We also have to keep giving her a shot every day and that helps build her white cells.
She will be back to normal in no time and please pray that her pain will not come back, monday night she gave me a scare when she woke up and said the back of her knee hurt. She was crying and I scratched her back and she did fall back to sleep and it seemed to be ok the next day.
If her cancer starts coming back strong now we will be in big trouble because she cannot get anymore chemo until her bonemarrow starts producing blood and platelets on her own.
We can only pray that the treatment in Philly worked and she will not need any more chemo.
Thank you for all the prayers and support!
Love, Angie
Monday, May 19, 2003 12:14 AM CDT
Hello,
First I will tell you that Taylor is getting blood and platelets today, her platelets were 5 (normal 150-450)and her blood was 6.1 (normal 11.5-14.5) so she was in desperate need of both. She is also hurting again but this time it is her eye, over the weekend she somehow got an infection and her eye lid is very red and swollen. Her white blood cells went down again so right now she has none! She cannot fight off any infection on her own so that could explain her eye. They will put her on an antibiotic but if that doesn't work we will have to be admitted to the hospital.
We did have a nice weekend and after going to the clinic on friday her counts were still going down so we knew we had to be careful with her. Her platelets were 21 and as we were leaving the clinic Taylor said "mom it feels like somebody just squirted me with water!" We looked in her shirt (they had to draw blood from her port to type and cross it for blood today)and from where the needle was bleeding and it went threw the bandaid, so blood was running down her chest. We stayed a while just to make sure her blood was going to clot, and it did. We went home loaded our bags and went to the school to pick Landon and Andrea up. We went to the office to sign them out and Taylor was walking out the door and the door started to close and knocked her right over and she bumped her head(bruised it) and skinned her knee(not the best way to start the weekend) We then picked cousin Matt up in Brandon and headed down to Nokomis. We loaded the boat in the water and spent the rest of the afternoon at the beach. The kids had fun finding shells, crabs, sand fleas, conch shells, and even a star fish.
Then we went back to Barb and Karl's (Jeff's sister and brother-n-law) house and the kids swam in the pool. (Taylor rested)Her knee hurt and so did her head and her eye just started to hurt. Taylor loves to have Andrea with and she is great when Taylor is not up to playing she just swam and played with Matt and Landon. Barb and Tanner came up friday night and Karl and Kyle came saturday morning (from Naples)
Saturday we went out on the boat again and to the beach, Lisa came up from Naples (Jeff's sister)We baked a cake for her 40th birthday (Taylor picked it out) Then late saturday afternoon Jeff and I left to go stay down by Boca Grande, where the fishing tournamet was. Sunday morning I did have the winning fish on but it never gave me a chance to fight it. Most of the time the tarpon will go to the bottom and try to get in the rocks but this one came straight up and jumped out of the water and so the hook went flying as well.
We did get to see how big it was and he was at least 130 pounds and the winning fish that day was 112 lbs. Only two fish were weighed so the fishing still needs to improve, the tarpon are not biting like they use to in the past. I do have a chance to fish in another tournament this saturday and this is a bigger tournament with more anglers. So of course the prize money would be more!!! We are just waiting to see how Taylor will be feeling, I did not like to leave her, even though we were just 30 minutes away. It was nice to get away with Jeff for one night, we needed that.
We will be going back to the clinic wednesday and again on friday and hopefully Taylor will be able to go to school on thursday because they are going to be having beach day,fun, fun, fun!!
I will update again on wednesday!
Thank you for your continued prayers and support!!
God Bless, Love Angie
Wednesday, May 14, 2003 6:10 PM CDT
Hello Everyone,
Taylor stayed in school yesterday until noon and then she was ready to go home. She had a good time and all her classmates were glad to see her.
Then after school Andrea came over, they always find something to do. They do eat alot of freeze pops when they are together so thats a good thing. Then at 7:00 we went to a open house for the new school that they will be going to. It's not ready yet so we just got some info and were introduced to some of the teachers. I signed up to help out this summer in preparing the school to open on August 11.
Today we went back to the clinic and her ANC went down to 400 (meaning,her immune system is not very strong)so we have to start back on the GCS-F shots everyday until they come back up. Her red blood cells were at 8.6 and they will transfuse if it falls below 8.0. So that means we have to go back to the clinic on friday and if she needs blood we will have to drive to the hospital to get it.
She did go to school today after the clinic and it was 10:30 when we got there and she was able to last all day. But one of her teachers noticed that Taylor did not look that good at the end of the day and gave Taylor a snack because she did not eat much for lunch. I think tomorrow I will just keep her in until lunch time, which is not until 12:50. If her blood is getting low she will not have much energy. She did want Andrea to come over again today after school and I just could not say no, so Andrea is still here and they are just hanging out in Taylor's room. They were playing games and cards and eating freeze pop after freeze pop. Taylor is not gaining any weight but she has not lost any more either, so thats good.
I am going to be in a Tarpon fishing tournament on sunday so keep your fingers crossed for me!!!!!
Thank you for the prayers!
Love Angie
Monday, May 12, 2003 8:14 PM CDT
Hello,
Well friday at the clinic Taylor was borderline for needing platelets, she was at 21. So this morning when we went to the clinic her platelets were 5, so they ordered them and we had about two and a half hours to kill so Taylor wanted to go to the mall. We went to her favorite store (Limited Too) and she did find something to buy, but she was just not herself. She looked so sad today and I just wanted to find something to cheer her up and shopping normally does the trick, but today it did not seem to work. We went to chick-fil-a to have lunch and she could not even eat one chicken nugget, she ate about three french fries and that was it.
Friday when they weighed her she lost more weight she is now down to 40 pounds and she can not lose any more. We did put her on a steroid friday to help her gain weight and I think it finally might be starting to work, she ate a little bit more tonight. Her white blood cells went down again so her immune system is week, which means keeping her out of crowds.
We did have a busy weekend, friday afternoon I went to my girlfriend Jennifer's house for a few hours (by myself) and it was nice to get away for a short time. When I got home Andrea was over and she was going to spend the night. Saturday the girls hung out all day and then we all went over to some friends that live in the neighborhood and went swimming in their pool and they cooked us steaks on the grill(Thanks Pete and Susan). We had a great time and when Taylor got tired she went in the house and Susan found her pastels to draw with and she put a movie in, Andrea stayed busy playing with both Taylor and Landon.
Mothers Day was very nice for me Taylor had about 4 presents to give me and Landon had one, they were all hand made gifts they each gave me a wooden flower basket that they each painted, Landon still has to finish his he can not spend to much time painting at one sitting. Taylor was very pround of her presents and I will always cherish them.
In the afternoon we went to Madi's house (the Grybeks) and had fun with them swimming in their pool and taking a boat ride on the lake. Taylor would get tired and her and Madi would just go in the house and rest and then they would come back out and swim or hang out by the lake. They were all having fun trying to catch little minnows, and they caught quite a few.
Tomorrow I am going to try and bring Taylor to school just for a few hours in the morning and I will stay in the class room and maybe help the teachers with with whatever odd jobs they may have for me. She is still week and I don't think she would even stay if I was not close by. I will let you know how things go!!!
Thank you for the prayers!!!
Love Angie
Thursday, May 8, 2003 8:06 PM CDT
Hello,
Taylor is still doing OK I thought that she would have started eating more by now but she slowed down again. Monday and Tuesday she ate fairly good but the last two days have not been good at all. She feels like she is going to be sick after she eats and a few times she did throw it back up. We go back to the clinic tomorrow and I'm sure she will need platelets again. We did dicuss with the doctor about putting her on something that would make her eat and they said they would consider one thing but it takes about two weeks to start working. Monday she seemed to be eating a little better so the doc really did not think she needed it, but now I think we will have to try it.
After going to the bank Wednesday morning we did make it to Wal-mart and we picked out a few things for our flower garden and she found a few crafts. She is wanting to do things all the time but doesn't really have all the energy for it, and I am not going to push it. So we went home after wal-mart but she wanted to continue shopping. We were able to get her outside for about an hour, we went to the club house pool and of course all of this was do to the fact that her friend Andrea was going to be there. She just cannot do to much for a long time because she gets tired. So Andrea came home with us and they just hung out for about two more hours.
She really needs to be with her friends because it makes her so happy! and it gets her out of any depressed state that she may be in.
Jeff will be taking Taylor tomorrow so I can go to a Mothers Day Tea Party that Landons class is having!
Please continue with all the prayers!!!
Thank You, God Bless
Angie
Tuesday, May 6, 2003 9:40 PM CDT
Hello,
Today Taylor had a pretty good day, we drove Landon to school and then stopped by and talked to Taylor's teacher to let him know that Taylor should be back in school next week. Taylors friends were so happy to see her and Taylor was being very shy this morning, I told her she needs to get back to the Taylor we all know and love. She has been depressed and its hard to get a smile out of her.
After visiting the school we went to Publix, then brought the groceries home. Then we went to the Hallmark store, she had to buy me a Mothers's Day card and she also found a card for Madi and Andrea. Then we had lunch at Sweet Tomatoes, and she did eat more than just a few bites so I was happy. Then on the way home we stopped at the library which is one of Taylors favorite things to do. You are allowed to check out 30 books and most of the time she does, but we only checked out 16 today and a few of them were for Landon. We also got to see Charlene and thank her again for the gifts that she gave both of us!!
The day was getting better by the minute until I got home and the phone rang, it was our bank and they said I need to come in right away and close my account. Somebody got ahold of our checking account number and was on a shopping spree.
They were passing fraudulent checks and one of the stores they went to picked up on this and called the bank. I told the lady from the bank that this has to be a joke because MY PLATE IS FULL AND IT WILL NOT HOLD ANY MORE!!! Unfortunately it was not a joke and we had to close the account and open a new one. So I have to make alot of phone calls since I have 10 checks outstanding. And I just got two new boxes of checks in the mail today, I guess I will be shredding them!
Did I tell you that Jeff has been out of town again, he was in Alabama, out of all places. He said it very windy and alot of alarms were going off. I told him he better get out of there before a tornado comes and he said everybody was trying to leave. He is safe and on his way home.
The best news for the day is Madi came over and Taylor played and had a great time. She is starting to be herself again, and eating more at every meal.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." (JEREMIAH 29:11)
God Bless, Angie
Monday, May 5, 2003 7:01 PM CDT
Hello Again,
We arrived at the clinic at 9:00 this morning and they did a finger poke on Taylor and her counts were not too bad. She did not need any blood that was 11.2 (normal is 11.5-14.5) they do not transfuse unless it is under 8.0. She did get some white blood cells back they were 1.6 (normal is 4.0-12.0) and she did need platelets again they were 10 (normal is 150.-450.) she was able to get Jeff's platelets that he donated on friday. Platelets only last 5 days and when they counted Jeff's he had enough for two people, they were so impressed (at the blood services) because that doesn't happen that offen. I did find out today that if you have not donated blood or it has been a few years then you are not a good canidate for donating platelets. So that knocked a lot of people off our list, you can always start donating blood now and then in a few months will be able to donate platelets.
Taylor is still not eating to much and when they weighed her today she lost another pound, she now weighs 41 pounds.
Her eating has improved a little bit so I was surprised at her weight. She did not want her friends to come over today because she said she wants to feel better. She is spending alot of time with me and you can tell because she wants me around all the time!!!
Tomorrow we are going to visit the school and see what we need to do to finish the school year. I don't know if Taylor will be returning or not, she has white blood cells but when her platelets are so low it is not a good idea to send her to school. She still has no energy either so I know she would never be able to go to school all day.
She still is pain free!!!
Taylor still wakes up several times during the night and it is because she is still having bad dreams and when I try and ask her about them she is to upset to tell me. So I just have to keep reminding her it was just a dream, it's not real. I need to find out what she is dreaming about because maybe we could talk about it so it would not bother her any more. I can't even imagine what terrible things are going through her head, I pray she doesn't remember half of what she went threw in Philly. She was on a lot of pain medicine so they said she may not remember alot of it.
Thanks you again for the prayers!!!
Love Angie
Sunday, May 4, 2003 6:49 PM CDT
Hello,
I just wanted to let everyone know that Taylor is improving everyday, the pain is gone. We are still working on eating and I know that will just take time to get her stomach back to normal size again, I think right now it must be about the size of a pea. She takes just a few bites and she is full, so we try and have her take a few bites every hour.
Jeff's sister Lisa came up from Naples and spent the day with me and Taylor (Jeff and Landon went fishing) Lisa played games and also did some craft projects with Taylor. We did walk over to the club house because they were having a neighborhood yard sale and Taylor wanted to go, but after about 15 minutes we had to leave because she was getting very itchy.She just cannot tolerate being outside for a very long period of time. Taylor was not even in the mood to have her friends come over, she was just very tired and wanted to hang out with mom.
We have Taylor's account set up at the blood bank so anyone who told us they would donate we have you on the list (we had to give them a list on friday of all the names) We can add to the list so you can still let me know. We do have alot of names so we should be good for a few months, but you can still donate!!
Taylor is getting really bored at home and there is not a whole lot of things we can do, she just is not up to doing alot of activity. We did make cookies so that kepted her busy for a while and after we were done she took a nap.
We go back to the clinic tomorrow morning and we will find out just what her counts are doing!! Last night was the last time we have to give her fluids at night, so they will also re-evaluate her tomorrow. She is still so very week and gets tired really easy so I'm sure she will be needing more blood products this week.
I will let you know how tomorrow goes and update in the afternoon.
Thanks for the continued prayers and support!!
Love Angie
Friday, May 2, 2003 8:39 PM CDT
Hello,
I have some very good news to tell you, Taylor has not needed any pain meds for the past 24 hours and she finally started eating something today. She is feeling so much better, and now we know that the treatment in Philly is working otherwise the pain would not be going away. We won't find out how well it is working until we do another scan in about 4 or 5 weeks.
Taylor really did not start eating until this afternoon, at about 5:00 she ate 4 chicken nuggets and she has been eating freeze pops then around 7:00 she started watching a cooking show and they were cooking potatoes so she wanted fried potatoes. I jumped up and started cooking and she ate maybe about 1/2 a potato. Then she ate 1/2 a ice cream bar. I am so relieved and happy right now, this is what we have been praying for. If the treatment works as well as we can hope it could put Taylor in remission!!
Taylor's counts will still be low for a while and that means we have to start giving her GCS-F (neupogen) shots again. Weds. and thur. she was able to get the neupogen threw her IV when we were at the hospital but today I had to give her a shot and it was twice the dose as before (since her counts are so low the docs wanted to give them a good boost) so that means more to push into the skin. Taylors legs are so skinny I knew it was really going to hurt and she begged us not to do it. We had to and she knew that so finally she agreed and it really did hurt and she cryed and cryed. After she forgave me, she had a freeze pop and we snuggled in the chair.
Landon woke up today and he was feeling great and very hungry, he was ready to go to school .
Thanks again for all the prayers!
God Bless, Angie
Thursday, May 1, 2003 8:48 PM CDT
Hello,
I am happy to say that Taylor made it all night without needing extra pain meds, but I still was not able to sleep through the night because at 3:30 in the morning Landon woke up because his belly was hurting, I told him he better stand by the toilet for a minute and as soon as he did he threw up. He did go back to sleep and slepted until 11:00am. Jeff had to stay home with him today and I went to the hospital with Taylor. We left home at 8:00 and did not arrive at the hospital until 9:15 the traffic was really bad and of course it was raining. It normaly takes us about 50 minutes to get there.
They first checked her counts and then got her blood started, her blood went down to 6.8 and her platelets were at 40 so I am sure she will need more on monday. After her blood they gave her 3 hours of fluids, I thought that would have perked her up a little bit but it didn't. So we did not leave the hospital until 5:00 and got home at 6:00.
She did feel like going to the play room at 2:00 because that is arts and crafts time. She stayed in there for an hour.
She fell asleep on the way home and then walked in the house and napped some more. I am so stressed now just because she still is not eating, and I try all day long to get her to take a bite of this and a bite of that.
We do have her on fluids at night so the pump will run for 6 hours. She will get this for three nights and we will go from there. We have to go back to the clinic on monday.
Jeff is going to the blood bank tomorrow and donating platelets and he is going to set up an account so anyone who wants to donate they will go directly to Taylor. Taylor's blood is O+ and platelets can be donated by anyone.
If you are interested let me know and we will try and set up a schedule so everyone doesn't donate the same week (blood products only last a few days) they are in need for platelets and if you can donate them you must be at least 17 weigh 110 pounds- have a good vein in each arm and have not taken products containing aspirin, ibuprofen, or other anti-inflammatory medications for 72 hours prior. Platelet donation takes about 2 hours.
Jeff will get all the account info tomorrow so please let me know if you can!!! (Of course you have to live in the Tampa area)
Taylor had a very wonderful surprise when she got home, it was from a friend (Charlene Weaver) It was a build-a-bear dressed in a very cute little outfit and the name of the bear is "Hope". She also stuck in some click-on markers and paper and a hat that will be perfect for summer(it is a runners hat so it will be nice and cool to wear) Then for me she gave me a certificate for a one hour massage!! Thank you so very much, I can't wait to use it. Taylor loves the bear she is sleeping with it tonight!!
Landon got sick one more time tonight but now seems to be feeling better. Jeff and I have been walking around with the lysol and wiping off and disinfecting everything. Landon did stay in his room almost all day watching TV so that was good. We just have to be very very carefull so Taylor doesn't get sick.
Thank you for all the prayers!!
Love Angie
Wednesday, April 30, 2003 6:17 PM CDT
Hello Everyone!
Taylor still could not get through the night without needing a dose of the oxycodone,she woke up around 3:00am. and was hurting a little bit so I gave her some. She woke up this morning feeling OK, she, of course took a shower and once we got Landon off to school we went to the clinic.
When we got there we filled all the nurses in as to what happened in Philly and then they checked her out. Taylor lost 5 pounds and is now down to 42 pounds, they were very surprised and put us in a room to see the doctor. They accessed her port and drew blood and her counts were worse than I thought they would be. Her counts dropped really fast her blood was 7.1 (normal is 11.5-14.5) they transfuse anything under 8.0, her platelets were 3 (normal is 150-450) so they ordered her platelets and fluids. tomorrow we have to drive to the hospital to get the blood and more fluids.
Taylors platelets have never been that low before. She doesn't have any White blood cells soshe has no way of fighting off any infection. We are going to be very careful and stay away from crowds, and I think it will take her a few weeks to bounce back (the doctors in Philly warned us about this) She will be needing alot of platelets in the next month so if you have ever considered donating platelets now would be a great time to do that!! There is a shortage right now.
Taylor only ate a few potato chips and 2 bites of malt-o-meal, and some juice. The fluids perked her up a little bit and she seemed to be feeling better. But when we were walking out of the clinic she said "I'm dizzy" and before I had a chance to grab her she fell to the floor(right on her knees, the one part of her body that really hurts) I felt terrible, I should have been carrying her. When we got to the car she stopped crying and seemed to be OK. Once we got home we tried to make her eat more and she would take one bite and that was it.
We are going to start giving her fluids at night, our home health company will deliver them tomorrow.
I had to call our neighbor Penny to get Landon off the bus because I was not going to make it home in time. Landon likes that because she has two boys that ride the bus, and Landon playes with one of them(Kyle) all the time.Thanks Penny!!
Love, Angie
Tuesday, April 29, 2003 8:45 PM CDT
Hello,
Last night Taylor only woke up once and needed more pain medicine. She then slepted until noon and as soon as she woke up she wanted to take a shower. After her shower we had a delivery and it was from one of my best friends (Jennifer D'Ambrosio & family) it was a cookie bouquet and they were shaped like cats and Taylor loved it. She of course will not eat them, she wants to save them and use them as decoration. We will keep them is the plastic and see how long they will last (I'm sure for a very long time and hopefully we don't get bugs)
I tried and pushed food on her all day long but she really did not eat much, I kepted telling her if she did not start eating we would end up back in the hospital.
I had to put a new patch on her because the other one was falling off so she only needed one dose of the oxycodone.
She was able to walk around a little better by herself but still is quite week. Her friend Madi came over for about two hours and Taylor enjoyed that, they colored and watched TV. Then madi said to me "Miss Angie, why are Taylor's legs so skinny?" So Taylor said "because I just don't eat much any more" So I told Madi, Taylor needs to eat more so she won't have to go back in the hospital. So they both had a freeze pop.
Tomorrow we go to the clinic and they will determine how well she is doing, She does get enough liquids in her so hopefully that will be enough to keep us out of the hospital.
I feel a little more rested today after I started taking my vitamins again, I forgot them when we left for PA. I tried to get Taylor outside today and she lasted for about two minutes and started getting to itchy so we had to come back in.
Landon got another star in school today!!
Thanks again to all who put Taylor in their prayers!
Love Angie
Monday, April 28, 2003 6:26 PM CDT
Hello,
It was so nice to sleep in our own beds last night, Taylor slepted OK but did wake up a few times and I had to give her more pain medicine. She woke up once just from having a bad dream and she woke up another time because Sweetheart was taking over her pillow. I can't believe Taylors cat I think she just senses that something is wrong, she has always been that way. When Taylor is in pain her cat comes running.Yesterday when we got home Sweetheart stayed by Taylor almost the whole time, just laying in bed with her. So last night I slept in bed with Taylor and Jeff slepted with Landon, and Sweetheart slepted right by Taylors head and it was like she would keep her nose touching Taylor.
Taylor would wake up and pet her and I think that just made Taylor feel special that her cat stays right by her side.
Sweethearts leg is all better now,($235.00 later) we had to have our neighbor (Gary) take her to the vet monday morning because her leg was so bad. Well something bit her(I could not see any marks) and it became infected. So she will be on an antibiotic for a few more days. We would do anything for this cat, she means way to much to Taylor(and the rest of us)
Taylor is still in pain but I think it is getting better, she wears a fentanyl patch and then gets something my mouth (oxycodone)every 4 hours (when she needs it) and today she made it to 5 & 6 hours before needing something. She watched alot of TV, took a bath,and then this afternoon Andrea came over for a few hours. Taylor and Andrea layed on the floor and made things with beads. Then when Taylor got tired she just rested and then Andrea played with Landon.
Then one of our wonderful neighbors (Rose Pasquino) made us dinner(another 3 course meal) that helps make life a little easier.So Jeff has been eating well since we got home.
He has to go out of town tomorrow (drive to Miami) so he will be gone for one night. I am packing him left-over to eat.
Landon went back to school today and he brought home a star!! That is what you want every day-not a number. So we praised him for that. We try to give him alot of attention through all of this because I know sometimes it bothers him.
Taylor wanted to go shopping to wal-mart all day and she really was not in any shape to do this, she still can hardly walk and she is not eating very well so I told her as soon as she starts eating a little more we will go. She wanted to by construction paper and all of the Mary-Kate and Ashley video's. She ate 3 noodles for dinner so jeff took her to the video store so we could rent some movies.
Some of you have been wondering if the treatment caused her pain or is it the cancer? It is the cancer, the treatment did not cause any pain at all, hopefully the treatment will be getting rid of her pain.
We have to go back to our doctors on Wednesday so they can start checking her counts again. I'm sure she will be needing blood and platelets soon.
I added some new pictures today, one of Taylor horseback riding (with girl scouts) and one of her snorkeling in the springs, and one with the easter bunny and her two best friends.
Keep up the prays I think they are being answered!!!!
Love Angie
Sunday, April 27, 2003 7:34 PM CDT
Hello,
We made it home safely and Taylor's pain was not bad. Before we left they gave her an extra dose of morphine(through IV) and then put on a new patch. She did really good, we left the hospital at about 8:45 after we flagged down a taxi and got to the airport at 9:00. We boarded the plane first and I did have to ask the stewardess to help me with my backpack, because I had to leave the stroller outside the door and I had to carry Taylor on and could not do both. She looked at me funny and then said "well what do you want me to do?" in a snotty voice. This time I said I have to carry her on the plane and I need your help. I did want to say a few more words but whats the point.
Just please remember if you ever see someone having a difficult time stop and help them, before they have to ask, you could really make someones day!
Jeff and Landon made it home at about 7:00 this morning, they were happy to get hope but happier once we got home.
I just have to say Thank You to Rachelle Silver who cleaned the house and washed the sheets saturday night and then today she brings us over a three course meal. Thank you Thank you!
Taylor has actually walked a few feet today, her knees are bad so she walks bent over but she couldn't do that a few days ago. We are parying that by the end of the week the pain will be gone!
The first thing that put a smile on her face was when Jeff picked us up from the airport and he handed her a small package that she had received in the mail and when she opened it it had two packages of kitty stickers (I had not seen a smile for about 9 days)and a Precious Moments cross with ribbon for a necklace. Thank you Tracey Whittaker I need to see that.
Then her friend Andrea stopped in for a few minutes and Taylor seemed to be back to herself again, she forgot about her pain and was talking with her like nothing was going on.
She couldn't get up and move but she was happy .
I will keep updating everyday until she is back to her normal self again.
Love, Angie
Saturday, April 26, 2003 4:40 PM CDT
Hello,
Well we thought Taylor's pain was pretty much under control but the past few hours she has been having a hard time. The patch takes care of alot of the pain but she still needs more, we were trying a oral morphine and now I just gave her a pain med called Oxycodone,they said it should work faster than the morphine. If the pain gets too bad again I am going to tell them to give her something through her IV
before they take it out in the morning. We are going home tomorrow--we have to because Jeff, Karl and Landon left to drive back home and they took all of our stuff. The only thing I will have to carry is a backpack (I did keep the laptop so I could update again) Good news is hopefully Barb(Jeff's sister) knows someone up here who is going to drive us to the airport so I will have help. I am going to have the doctors give her as much pain meds before we leave and then hopefully Taylor will be somewhat comfortable on the plane. Our flight is due to get in at 12:40 and I am sure
the boys will be back in town by then.
Jeff is going to be a nervous wreck the whole drive back I could just tell when he left, he really did not want to leave us. I am eating just fine (of course) but he needs some food, his face looked sunken in. He was just sick but he is one that won't eat when he is worried.
Please pray that we have a safe and pain-free flight home.
Love, (for the last time from Philly!)
Angie
Friday, April 25, 2003 8:25 PM CDT
Hello,
Taylor woke up this morning and she was in more pain, so after the doctors looked at her they moved her morphine up again. She was in pretty bad pain until about noon then they finally got it under control again. She was trying so hard to get out of bed by herself to go potty but just could not do it. We have been trying to figure out a way to get us home on sunday, so the doctors thought we should try a fentynol patch that would work the same as morphine and the patch would last for 3 days. So this afternoon they slowly did the switch from the morphine IV to the patch. If it works and her pain stays in control then we might be able to make our flight. We really won't know until tomorrow night. Taylor's legs are still swollen and right now the patch is not working to relieve all her pain.
She did throw up about an hour ago and I think that is from the switch of morphine to fentynol. She feels better now.They did put her on an antibiotic for her fever and nothing is growing in the culture. She did get it back but it was a low grade (100.6).
Jeff is feeling much better today but we still wanted to keep him away so he stopped by with Landon this morning and only stayed for about 30 minutes. Then I took Landon (since he still is not aloud in her room)and walked around and found him something to eat for breakfast.The Ronald McDonald House gave them passes to the zoo so thats what they did. Landon also made a few friends in the house so he has been having fun.
It is so hard to watch your child go through so much pain, and she keeps telling me how much she hates this cancer.
She has been having a lot of bad dreams and talking in her sleep, I am hoping that the fentynol will change that. Her level for being radioactive went down to 6.8 so we would have been able to leave today if it wasn't for the pain.
We can only continue to pray that her pain will go away and she will be running by the end of the week. She is the strongest little girl that I know and she is willing to keep fighting. I find myself staring at her when she sleeps and cannot figure this whole thing out. My precious little girl is being tortured by this monster and she is going to fight until we win.
I know how much everyone is praying for her so I know the prayers are going to be answered, we want her to be cured of cancer!!!!
Love, Angie
Thursday, April 24, 2003 5:10 PM CDT
Hello,
Taylor's pain still is not getting any better, we thought it was for a few hours and they decreased it by alittle bit and then we found out that did not work and raised it again.
Her legs are really swollen and it still hurts her to move.
They did take the catheter out because that was making her cry all the time, she did not like that tube in her privates. Her treatment is over and if wasn't for the pain we would be getting out of here tomorrow morning.
The radioactive level has to be lower than a 7 and this morning she was at 9 (yesterday she was at 26) The doctors dont think she will even be able to fly on sunday, our flight was suppose to leave at 10:10 am. They are checking to see if we would get a medical flight if my insurance would cover it, it is in the price range of $6,000. to $10,000.
Taylor has to get out of bed now to go potty so that is why we had to go back up on the morphine. We are also trying to get the itching under control, she is picking so much she has scabs all over her body. And now she is getting a fever so they are going to draw blood for a culture and I'm sure they will put her on an antibiotic.
Oh and I almost forgot to tell you Jeff came in this morning to relieve me and after about 3 hours of being here he called me and told me to come back to the hospital because he was getting sick, (throwing up) so Jeff is now resting at the Ronald McDonald House. I also found out that it is going around in the house, they said it only last for 24 hours. I think I will just stay here with Taylor and pray I don't get it.
I think I am really being put to the test here I am not sure why but I am trying to handle all this as best I can.
The only good thing that happened was I got a visitor last night from a friend who use to live in Tampa, Laura Couch, her daughter Kendall use to go to pre-school with Taylor. Taylor and Kendall really want to see each other so hopefully that can happen before we leave.
Pray Taylors fever goes away along with the pain.
Love from us all,
Angie
Wednesday, April 23, 2003 6:12 PM CDT
hello,
Well I wish I had some good news to report but I don't, Taylor is still in pain and they increased her morphine once again. That is a good thing for her because she sleeps more and hopefully she will not remember all the pain she has been in once we leave here.
She has been dreaming alot and talking in her sleep, last night she was talking to her friend Andrea (in her sleep) and said " Andrea there is a big spider on me!" Then later she must had been making something with her other friend Madi becasue she said" Madi can you hand me the scissors!" Then she woke up and realized Madi was not here and she starting crying, and told me how much she missed her friends.
I am here with Taylor at night and Jeff will come in during the day, only one person is aloud to be in the room at a time. We bring Landon here everyday just so he can tell her hi, he has to yell from the doorway. He can't see her because of the lead shields. Tonight Jeff, Karl and Landon were going to the basketball game, thanks to Jeff's sister Barb (Karl's wife) they were able to get free club seating.
Hopefully the boys will able to have a good time.
Karl has been helping out with Landon alot so when me and Jeff switch, Karl can stay with Landon. The Ronald McDonald house is about 7 or 8 blocks away. Today it was cold I think the high was only 58 and it was cloudy and windy so it felt even colder.
Taylor is sleeping right now and has been most of the day, we did have to move her a little bit because she has been laying in the same spot for three days and has not moved. She of course did not like the idea of moving her but we had to. That was a very painful thing for her and the screams I'm sure could be heard thoughout the hospital.
She still is not eating(nothing) she has to take medicine every 4 and 6 hours so she drinks a tiny bit of juice with it and thats it. We leave the TV on Animal Planet all day and even though she is sleeping if I try to change the station she somehow will wake up and yell at me to turn it back. So Animal Planet it is!!
We did talk to one of the doctors today and he said the pain may not go away for another week. If thats the case we will not be able to fly home on sunday we will have to stay here until the pain is under control. There is no way I would even try to get her on a plane right now.
I am somehow managing to get through the days a little better now, just knowing that Taylor is sleeping more and the pain is a little more under control. I don't think they can increase her morphine any more so hopefully this will work.
I know everyone is praying very hard and I know God is going to answer our prayers.
I will write tomorrow.
Love, Angie
Tuesday, April 22, 2003 8:19 PM CDT
Hello,
I just have to say that last night was one of the worse nights in my life! Taylor was in so much pain I did not know how much more she could have endured. They increased her morphine again and nothing seemed to be working. 4:00 a.m. she had to go potty so I had to get her out of bed and set her on the toilet (a bed side comode) I touched her leg and she screamed in pain like I have never heard her before, I could not handle this. I called the nurse and she came in to help, we pushed her morphine button and tried again. We had to move her so slow and in the meantime she keeps saying " I have to go potty!!" and screaming in pain at the same time. I started getting dizzy and I could just feel this huge lump building in my throat. I have never felt so helpless in all my life!! We finally got her on the potty and returned her to bed, she then kept asking me "Why did I have to get this cancer, and why won't it go away? I just want to run around with my friends again and go home. I want to see my cats!!! I hate this stupid cancer!!!" She repeated this many times. And I really did not have agood answer for her. I was trying not to scream out myself because I wanted the answer too. WHY WHY WHY?
Jeff wanted into our room at 6:00 this morning and I was so happy to see him I started crying all over again. He did not stay long because he wanted to shower and get Landon and Karl back to the Ronald McDonald house. Landon came back to the hospital with Jeff while Karl slept. Jeff and Karl did not sleep at all they drove all night. Taylor was happy to see them both and Landon did not know what to think. Taylor was crying and he wanted to go back to the Ronald McDonald house. We got him playing with Nitendo and Taylor was watching him so it kept her mind off the pain for a while. We then told Landon that after her injection he would not be able to come in the room anymore, so her will have to stay out until friday or saturday.
They put her catheter in at 9:00 this morning and of course that caused more pain. she did not like that a tube was in her private part. Today they increased her morphine even more and her injection was at 1:30. SO WE CANNOT HUGE AND KISS HER, I can touch her just for a second. She is really itchy and can not itch so I can put on a glove and reach my hand around the shield long enough to itch her legs. They want very limited contact with her. She was really upset when we had to take her pink blanket and put it in a plastic bag. If we did not do this she would not be able to get it back we would have to leave it here.
Hopefully the pain will start to go away. I will righ again tomorrow night I have to go for now Taylor is needing me to scratch her legs again.
Pray very, very hard Taylor is so strong but she can't handle much more!!!
Thanks , Love Angie
Monday, April 21, 2003 1:36 PM CDT
Hello from Philly,
I (Angie) am going to write this time in my own words.
Leaving Jeff and Landon back in Tampa was very hard for me and the trip was even harder. Taylor was in alot of pain and every I had to move her she would scream in pain. She has been on morphine but she still hurts. I had to get her off the plane, put her in a little stroller thats hard to push, carry a back pack, a lap top,my purse and pull a big suitcase. I was such a mess I cried the whole time, people just looked at me nobody asked to help. I had to go to the other side of the airport and get a taxi, once I got to the taxi he seen that I needed some help and was very nice and drove us strait to the Ronald McDonald house. The house is very nice it is an old mansion (it's the first Ronald McD. house)
We could not do much because Taylor was hurting, but once she feels better and out of the hospital I know she will have fun there.
Last night was very hard for me being alone and trying to please Taylor who gets very moody when she is on Morphine.
It now seems that every inch of her hurts and if you touch her she screams. I called Jeff and of course I was a mess and so was he. Before I could even tell him I needed him he said "I'm going to drive up there, I can't stand this!"
I was very happy to hear that and I said Landon needs to be with us too. He asked Karl (his brother-n-law) to drive with him, so he can stop at a store (for work) in Jacksonville. Then Karl would be able to stay with Landon.
They should arrive early tomorrow morning.
This morning we got up and Taylor wanted to take a shower so I had to carry her to the tub and set her in it, pain and all she likes to stay clean. I think the hot water helped a little bit. They have a van so they makes trips to and from the hospital several times a day. Once we got here it wasn't to bad, they checked her in and accessed her mediport and then drew some blood. Her blood wasn't too bad(9.5) but they want it to be over 10 so they are going to give her some tonight, along with IV fluids. She is getting very week because she really has not been eating since friday, it has been just a few bites a day.
They will put her to sleep tomorrow morning and put a catheter in her. They will start the treatment early afternoon. We are in the hospital room right now and it is a little weird, they have everything wrapped in plastic and covered up.There is three lead shields on each side of her bed. We don't have to start being carefull until tomorrow when the treatment will starts. The MIBG Injection will be coming from Michigan and it will be frozen so it will have to unthaw. They are guessing we will start by 2:00p.m
I will write again tomorrow, if you want to email or send any messages I will be sure Taylor see's them.
Bye for now! Keep the prayers strong!
Love Angie and Taylor
Saturday, April 19, 2003 3:35 PM CDT
Hello Again,
I completed my series of testing and nothing has really changed, I still have a large amount of cancer in my body and since tuesday night I can feel it.
We were on spring break this week and until tuesday night I was feeling great. We went to Homasassa and stayed with our friends the Grybeks (Madi's family) we stayed in a cabin that was right on the river(that leads out to the gulf)
We went fishing and we went swimming in the spring. We got to see alot of manatee's. we had such a good time we did not want to leave (I was crying, Landon was upset too) but dad had to work on wednesday and I had to go to the doctor. We tried to stay away from the clinic but they wanted to check me out and make sure I was OK to fly. Then when we got home Tuesday night that's when I started to hurt in my legs and arm. I took some codeine and the pain went away in my legs but my left arm still hurts.
Things really started getting bad thursday night and I had to start taking morphine again. The really weird part about all this is my cat Sweetheart got outside thursday night and she came back limping. Dad will have to bring her to the vet monday because she is not getting any better and it happens to be her left front leg.
So today we are both laying in bed with our left arm hurting. I slept most of yesterday and today I am doing the same.
Mom and I are flying out tomorrow, our plane leaves at 12:40 and will get to Phily at 3:10. It could be a long trip if my pain gets any worse.
Hopefully we will have internet access so we can let you know what is going on, if so then we will update everyday.
and give you the phone number so if anyone wants to call us.
I will be stuck in bed and will not be able to get up. Mom won't even be able to touch or come close to me.
We will update again from Phily!
We want to wish everyone a Happy Easter!!!!!
Hugs & Kisses and Love to you all!
Taylor
Thursday, April 10, 2003 6:29 PM CDT
Hello Everyone!
I am feeling great, and staying busy! I did have to get blood on March 26th and continue with my GCS-F shots until saturday. That weekend (the 29th) we all went to Auntie Barb and Uncle Karl's house in Nokomis. Auntie Lisa came and so did Auntie Cathy and steve. We all got together before grandpa and grandma left to go home to Minnesota. We had a great time and I even brought my friend Andrea with us since all of my cousins are BOYS.
Grandma and grandpa then came back to our house sunday night and grandma made some more of her famous cinnamon Rolls and some beef stew.Then monday night we colored Easter eggs. They left tuesday morning to drive back to MN.
Tuesday night I had girl scouts and we also colored eggs.
Wednesday night Andrea's mom gave us tickets to see the movie "The Hole" the new Disney movie that comes out in a few weeks. It was very good. Then thursday night we went to the Children's Cancer Center and guess who we got to meet????? MIKE ALSTOTT and his wife Nicole,they are really really nice. Mike sponsored a fishing tournament for the Childrens Cancer Center that was held on saturday and Jeff was able to fish in it. ESPN was also there and filmed parts of thursday night, friday night(the captains meeting) and saturday)They will be running a documentary on Mike Alstott sometime before football season starts again. Mom spent alot of time talking to Nicole in the 3 days and she even gave us pictures of their family and told us to keep in touch. I really liked Nicole and her two children are really cute!
Friday the 4th I had a bone scan and a CT scan, monday I had to get a bone marrow aspirate and biopsy (ouch) then yesterday I had to get an injection for the MIBG scan, but that was in the afternon so I was able to go on our field trip for school. We went to the Florida Aquarium and mom came with and then we drove over to the hospital from there. Landon and Madi came with us and it had been a while since they seen Landon and they all thought he was really growing! He is almost as tall as me, everyone always ask us if we are twins.
Today I could not go to school at all because we had to be back at the hospital at 9:30 for the MIBG test and that took almost 2 hours then we went down stairs and I had to have an MRI. Tomorrow I have to go back and have the 2nd part of the MIBG scan along with a PTF (Pulminary Function Test) and a ECHO. Then I should have all the tests need for Philly. We have to leave on Easter sunday to fly there so we can be at the hospital by 9:30 monday morning. I will be there for a week and I will give you all the details next time.
Spring break is next week so we are going to be busy and none of it is going to be visiting any doctors, we are taking a break from them too!!!
I am also taking a supplement called Protocel and I will tell you about that next time too..Have to go for now!
Please keep me in your prayers!
Love, Taylor
Monday, March 24, 2003 7:35 AM CST
Hello,
It has already been three weeks since my last update and I have been doing OK. I try to stay busy because that makes me happy and I like to spend alot of time with my friends. Every weekend I am either spending the night at Madi or Andrea's or they are spending the night at my house. I have girls scouts every other tuesday night and we have been going to the children's cancer center every other thursday night. Wednesday night I go to church with Andrea for "team kids" it is very fun!
I started to get more pain in my legs on thursday the 13th and it was a little hard for me to walk, but I still wanted to do things. We went fishing on friday and then went to the beach and collected shells. Sunday we went over to Orlando to Fort Wilderness and spent the day with our friends (Madi's family) We brought our bikes and went on all the trails, went swimming, Landon and dad went fishing in the pond, we had so much fun! Then on the way home about 10:00 pm. Landon and I both fell asleep and I woke up about 15 minutes before we were home and my ankle hurted so much I could not stop crying. We finally got home and I had some Tylenol with codeine, that worked for a few hours and then I needed some morphine. Thank goodness I started chemo on monday (the next day) because after a few hours of getting chemo the pain went away. The nurses put me on a morphine drip while I was there so I slept all day. So that just tell us that the chemo is working a little bit or the pain would have not gone away.
I started chemo on St. Patrick's day and finished on Friday, I have to get fluids for eight hours at night and I can now sleep with the pump it doesn't bother me anymore.
Now for some good news I will be going to Philly on April 21st and will start treatment on the 22nd. I think we will be there for at least two weeks. They need all of my scans to be repeated so I will be getting every single test done possible. That is going to be the whole week of the 7th. So I will be missing school, then the next week I have spring break and then the next week we will be leaving. We might have to go to Philly either on the 4th or the 11th to see the doctors and see the room that I will have to stay in. They want to make sure we want to do this but we know it is the right thing to do.
I went to the clinic this morning and I need blood so they are going to order it for Wednesday, I am a little pale but I still wanted to be dropped of at school so my teacher will just keep a close eye on me.
Please keep me in your prayers!!!
Love Always, Taylor
Sunday, March 2, 2003 6:39 PM CST
Hello Everyone,
I have been feeling very good considering the fact that I have a body that is full of cancer!
We got the MIBG scan report back and the areas that show uptake (disease) are within the axial spine, pelvis, upper and lower extremities. The sternum, there is some faint soft tissue uptake throughout the abdomen. The uptake within the long bones and spine is a little spotty, and there is some activity in the region of the thyroid and the salivary glands and mouth.
I was going to start another round of chemo on Feb. 17th but my platelets were a little low so we waited and started on Wed. the 19th. I got the chemo at the clinic along with fluids and some premeds to help so I don't get sick. I did just fine, we got home about 2:30 and mom hooked me up to a pump and then I got fluids for 8 hours. Thursday I was feeling good so I went to school. Then more fluids(8 hours)
at night. Friday I got more chemo (they put the five days of chemo into 3 and every other day)then after that we had to pick up girl scout cookies. Mom volunteered to be our troop cookie mom, so she had to seperate all the cookies for the girls. Friday night grandpa and grandma came back over so she sleeps with me and grandpa sleeps with Landon.
Grandma also helps me at night to go to the bathroom because I have to bring my pole with me and it is hard to push. Then when my fluids are finished which is normally
around 4 or 5 am. she wakes up mom so she can unhook me. The beeping of the pump doesn't wake me up any more.
Saturday I had a girl scout fun day, different troops picked countries from around the world and we would visit their display, taste a food and make a craft from around the world. It was fun and grandma came with me. Then saturday night I had my two best friends spend the night (Andrea and Madi) we had fun until it was time to go to bed, we could not fall asleep because my pump was making so much noise. So we fell asleep to the noise of the tv instead.
Sunday I still went to my CCD class and Andrea came with us then after church we delivered more girlscout cookis.
Monday it was back to the clinic for more chemo, tuesday I went to school then on wednesday back to the clinic to draw more blood and then de-access me.
I had to have my mediport accessed since last wednesday since I had to get fluids every night (7 nights)
Wednesday after the clinic I went to school, then when I got home we gad to start the GCS-F shots again so I was not happy about that. Thurday I went to school, friday I was back at the clinic (to check my counts-finger poke) then I went to school.
Friday night grandpa and grandma babysat again so mom and dad could go to a friends birthday party.
Saturday I went to three birthday parties and had a blast at all of them.
Today I went to CCD then I helped dad outside.
We are going CHOP (in Philadelphia) in about 2-3 weeks, the doctors want to see me and they want us to check out the hospital and show us the room that I will have to stay in. We were put on a waiting list for this treatment and right now it is going to be two months. So in the meantime we have to prepare for this and get all the medical stuff done, all the pretreatment procedures.
Tomorrow I have to go back to the clinic so they can check my blood (This is about the time when I will need blood and/or platelets) so they will order then for wednesday it I am low.
Hugs and Kisses to you all!!
love Taylor
Friday, February 14, 2003 7:46 AM CST
Happy Valentine's Day!!
I have been feeling pretty good, I was able to go back to school for the first time this year. I went a few days last week and this week (inbetween all my doctor appts.)
First I have to tell you that on Feb. 2nd I took my first Communion at church and I was also confirmed! I had a beautiful long white dress. I was feeling great that day and the weather was perfect. It truly was a day made in heaven. Look at the pictures!!!
This week I was suppose to start chemo again but we had to wait until this next week because I had to get a MIBG scan.
I had to be injected with a substance on tuesday and I had the scan wednesday and thursday. This will tell us exactly were the cancer is and if it is truly in my bone. Another big reason why we had the scan is to determine whether or not I will be eligable for a study called MIBG Therapy. If I qualify we will go to either The Children's Hospital of Philadelphia or the University of California, we should know the results next week. MIBG is a substance that is taken up by neuroblastoma tumor cells, with this study it is combined with radioactive iodine. So this (I-MIBG) compound delivers radiation specifically to the neuroblastoma cancer cells and causes them to die. This is experimental, but has been used in more than 100 children in the US to treat relapsed NB. The main side effect of this treatment was a decrease in the mumber of normal blood-forming cells (called stem cells) in the bone marrow. We just happen to still have some of my stem cells frozen from when I had my transplant, and they can still use them for this.
I would be put in isolation for 4-5 days and will be placed in a single room with a bed surrounded by lead shielding to prevent exposure of visitors and hospital personnel to radioactivity. Family may visit the room, but must wear a radiation badge to measure exposure, and no one is allowed to go behind the shields or sleep in bed with me. If the tumors respond I may be eligible or a second and third course of treatment. Keep your fingers and your toes crossed!!!
I also had my follow-up appt. with the cardiologist and when they monitored my heart for the 24 hour period they did not find anything to be concerned about right now. If I start showing signs of the WPW (which would be rapid heart beat) then they would go in and do a Catheter Ablation. Doctors would insert an electrode catheter into the heart where the abnormal pathway is and the catheter heats up and destroys the small area of the heart tissue with the abnormal pathway. We met a teenage boy (14 years old) who just had this procedure done and he said it wasn't bad at all. He lived in Orlando and was coming to Tampa Children's for his follow up appt. The doctors will not do this now unless my heart weakens from the chemo, otherwise they will wait until I am 13 or 14 years old.
This time when I get my chemo I will be doing it at home!!!
A home health agency will be bringing the fluids and mom and dad will be doing that and I will go into the Tampa clinic everyday just to get my chemo and then go home and mom or dad will hook me up to a pump at night. I am so happy I don't have to stay in the hospital!!!! The only thing I really hate is when I have to get my GCS-F(neupogen)
shots after I finish chemo. I have to get them for about ten days after each round of chemo. Mom is normally the one who gives them to me in my leg, sometimes dad.
That's all for now so keep praying for me!!!!
LOVE, TAYLOR
Thursday, January 30, 2003 at 07:27 AM (CST)
Hello Everyone,
I checked into the hospital last monday (Jan. 20th) for another round of chemo. Everything went good and I did not get sick, I did get home sick by the second day and thats when I started to cry and I just wanted to go home. Since mom was getting over her strep thoat she could not come in until wed. morning. Dad stayed with me until then, so he was trying to make me feel better but nothing was working.
Even all the nurses couldn't believe how unhappy I was, they said "this is not the Taylor we know!"
Wednesday morning when mom came in this was just to much for her to handle and she talked to the doctor and told her whatever we had to do we need to go home. The chemo only runs for about 1 1/2 hours and the rest of the time I am just getting hydrated with fluids. So after the chemo was done on weds. we were able to go home for the night and we had to come back in the morning. I was so happy when they said I could go home and sleep in my own bed. We had to be back in St. Pete in the morning and I even brought a friend with me, Andrea. Her mom let her skip school to come to the clinic with me to get my chemo and it made my day. Friday we were able to go to the Tampa clinic to get my chemo(which is closer to home)
Next time I am ready for more chemo we are going to set it up with home health and have them come to the house and set up a pump so I can get fluids at night and go to the Tampa clinic and get my chemo during the day.
I still have not been back to school, I am feeling much better and after the first dose of chemo all the pain in my legs and arms went away. I did get another bone scan last week and we dicovered that I have new tumor growth in my legs and arms and they said this time it is in my bone.
I am going to take my first communion at church this sunday during the 9:30 mass, so we went shopping for a dress and I found the most beautiful long white dress. We attend Our Lady of the Rosary Catholic Church if you would like to come your welcome to.
I have to go back to the clinic on Friday to get blood and platelets, I went yesterday and they ordered them for me because my counts were very low. I have no white cells which means I have no way of fighting off any infection so we are being careful not to be around anyone who is sick. That is why I have not been back to school yet.
We are big Bucs fans and watched the game with our close friends!!! The Bucs are # 1!!!!!!!!
Thanks for prayers!!
Love Taylor
Tuesday, January 21, 2003 at 07:48 AM (CST)
Hello,
Well after 2 weeks of searching for a clinical trail and calling evey doctor and hospital that we could think of we came up empty handed. I am now in All Children's Hospital again getting chemo, I will be in for 5 days and I am not to happy about it. Mom and dad waited to tell me the news until sunday the day before that I had to go back in the hospital. I told them before I was never going back to the hospital ever again!!!! Mom and dad said that the pain in my legs and arms would go away if we started chemo and after sunday night (I was in alot of pain) I agreed to go to the hospital.
I would have good days and bad, the pain would always come back at night time and then during the day it wasn't so bad. I still have not been able to go to school, because most days I really had trouble walking. We noticed last week when my elbow was hurting that it was really swollen and sunday night when I was screaming in pain that my knee was swollen too.
We knew we could not wait any longer and I had to go in for more chemo. Now as for this morning I am feeling pretty good so keep your toes and fingers crossed that I don't get sick because the number one side effect of this chemo is vomiting and diarrhea. The first time I had this chemo I was really sick.
Landon and dad went to the monster trucks saturday night with some friends (Jay and Blake)and had a blast (thank you)
But then sunday morning Landon said his throat was hurting and dad thought it could have been from screaming. Then after a very long nap Landon woke up and mom could tell he was getting sick. So monday morning dad took Landon to the doctor and mom took me to the clinic to get my port accessed and get the doctors orders to dring with us to the hospital. Dad called and said Landon had strep throat. Mom said her throat was getting a little sore and her ears were feeling like they need to pop. so mom called her doctor just to be safe and by the time she seen her doctor she was not feeling to good and the doctor looked in her ears and said that they were cherry red, then looked in her throat and said you have strep throat. So after mom told her what was going on she have her two shot of penicillin to speed up the recovery process and put her on augmentin. So Landon and mom have to stay away from me for 24 hours and then they won't be contagious anymore. Mom never gets sick but she has really been stressing out the past week,(dad to)
Please continue to pray that I can fight this cancer (the doctors don't have much hope) but we are not ready to end this battle and I don't want to give up.
Love Always,
Taylor
Thursday, January 09, 2003 at 08:34 PM (CST)
Hello,
Happy New Year!
I just want to tell everyone we had a great time in Minnesota and we got to see snow (it only lasted one day) We had a wonderful chistmas and was thrilled to spend it with all our family and friends.
I have to say I did not begin the new year off to a very happy start, I woke up on the 1st and I just did not feel good my leg started hurting. That night they really started to hurt and by morning I was limping and it was getting really hard to walk. We flew back home on the 2nd and had one layover in NC. by this time I could not walk and mom and dad had to carry me thru the airport. We got home after Midnight and we had used up all the tylenol so dad had to go out and get more.
Friday (the 3rd) we did not do much I laid around all day I was missing some of my friends so Madi came over and spent the night. That took my mind off of the pain and I did OK. Saturday I walked over to the park with Madi and then came home and we watched some TV.
Sunday I was feeling a little more pain again but by the afternoon I wanted Andrea to come over and she did, she was going to spend the night with me but at 10:00 that night the pain was getting pretty bad and Andrea decided she wanted to go home and we all thought that would be best.
Monday morning I had a bone marrow biopsy done and we found out that the pain was from just what we were praying would not be true. My bone marrow is more involved than before so that means that the vaccine in texas is not working.
We cannot finish the vaccine and mom and dad are frantically looking for other options other than chemo.
I will be getting my MRI of the brain tommorrow and that will tell us if the vaccine worked on the tumors in my brain or not and also let us know how critical the time frame will be to find something else.
We really really need lots of prayers, I have been taking tylenol with codeine and now I have morphine it I need it.
The pain tends to come on fast and after a few hours it will let up a little bit where it is tolerable again.
Love Always,
Taylor
Thursday, December 19, 2002 at 09:28 PM (CST)
Hello everyone,
First, I have to tell you that I have been feeling very good and I have also been staying very busy. A wonderful young lady like me has a very busy social calender.
I went to school the rest of the week since I last talked to you. Then my friend Andrea spent the night on Saturday. I try to get together with my friends every day and usually do.
Dad went with me to Houston last time (Dec 9th)and every thing went great on the way out. On Monday night, when we got to the Ronald McDonald, we found out they were having a Big Christmas party. The staff of Southwest Airlines cooked a dinner with turkey and dressing, ham potatoes and lots of other stuff. I liked the ham and turkey. Thank you SWA.
Before dinner we got to have a ginger bread decorating contest. My ginger bread kind of disappeared under all of the frosting. I won a t-shirt. I also met a very nice girl from SWA, Cristy, who I have to thank for the card and presents. Then after dinner everyone got a present.
After the party I decided I still wanted the Sonic cheeseburger that dad had promised. We went and got the cburger then on the way back to RMH a very nice police man stopped dad. He saw how beautiful I was and told daddy that he should watch the signs a little more closely and told us to have a nice visit to Houston. Me and dad thanked them and told them to have a Merry Christmas.
The visit to the hospital went good too. I did my usual racing around the hospital. I went shopping and bought mom an ornament. My blood checked out OK and I got my 5th vaccine inj.. Now I will only go once a month which will be a nice break from flying. Especially when the trip home went much like my first trip with mom. Becuase of rain in Atlanta we got home at 2:45 am.
I did get to meet Hulk Hogan and I got his autograph at the Atl. airport.
On Wednesday,dad and I were both tired so I missed school and dad didn't have any work so we hung out and relaxed. The flying isn't as exciting anymore.
On Friday the 13th, Landon and me spent the night at Andreas House. WE both had a great time because Landon and Jade, Andreas older sister, love to play together. Mom and dad had the Christmas party for dad's work. Then on Sat. they went to another Christmas party and Caitlin came and watched us.
This week I missed 3 days while I was trying to get all of my 3 month test done. On Tuesday they were ready to do my MRI when the tech. noticed a note from my last one. It said I needed to have an EKG done to check something in my heart. We met with a cardiology specialist today (12/19) and after another EKG and an echocardiogram the Dr. told us that I have Wolff-Parkinson-White (WPW) syndrome. It's not serious but they hooked me up to recorder to watch my heart 24 hours. It has something to do with electrical current in my heart. Then we need to meet with the cardiology specialist in Jan. so he can futher check into this.
I also got the results of my bone scan and Ct scans and both of them were clear. Thank God!!! Dad says that was everything he needed for Christmas.I will be getting an MRI maybe on monday and a bone marrow biopsy they are the ones I really need because the MRI is for the brain and that is where my tumor was.
We will be leaving for Minnesota on Dec. 24 so we will probably get to have a White Christmas! We will return Jan 2
and then hopefully if all test results are good we will be flying back to Texas the first week in January.
We all hope everyone has a Merry Christmas and a Happy New Year. We love you all.
p.s. to everyone in MN please look us up when we are there!!
Love Always, Taylor
Monday, December 02, 2002 at 09:38 PM (CST)
Hello,
We have been busy so we just have not been able to update so let me tell you what has been going on.
We went to Texas again on Nov. 25th and everything went good, I am starting to not mind traveling so much. I know what foods I like in the airports and what I don't. We always pack snacks and water so we don't get to hungry since the airlines don't feed you anymore. We have been meeting some very nice people so things are not to bad.
We are always happy to get back home, and dad and Landon are always happy to see us return safely.
I was a little tired on Wednesday but I did go to school since we had off thursday and friday. We went to Uncle Steve's mom and dad's house for Thanksgiving and we ate lots of good food. Then we went over to our friend house (The D'Ambrosio's) and had dessert with them.
Saturday was the big day at our clubhouse because they had a fund raiser for us, we had a great turn out and it was a beautiful day. We had so much fun and we ate great food and my favorite thing was the rock climbing. I think I made it to the top about 8 or 9 times. We had bands and music playing all day and Santa Claus even came to visit, they drove him here in a BIG RED FIRE TRUCK (Land O Lakes Fire Dept) We had a moon walk to jump in and several other little activities.
We truly can not thank everyone enough for their support, we live in a great community (Lake Padgett Estates East) and everyone here could not be any nicer (WE LOVE YOU GUYS)
Channel 10 news was even there and so was the Tampa Tribune.
Thank you to all the business that donated items to the silent auction and to everyone who voluntered their time.
I had to go to the clinic today after school so they could draw some blood so we could send it to Texas. They like to check it a week after I get my vaccine.
I go back to Texas again on monday and then I will not have to go back until the first part of January. I will be getting an MRI on Dec. 17th of my brain and then all the other test they want to do the first week in January.
If my tumor in my brain is smaller of even gone we will know that the vaccine is having a positive effect. Please keep saying prayers.
Please say extra prayers for Jacob and his family because he went to Jesus yesterday.
Thank you, I love you all,
Taylor
Thursday, November 14, 2002 at 04:10 PM (CST)
Hello Everyone,
Well we went to Texas again, mom went with me, this was our third trip and this time things went much smoother. We left monday at 12:55 and got to Houston at 4:30. We took a taxi to the Ronald McDonal House and was there by 5:30 and they had volunteers there making dinner,(Meatloaf, salad, greenbeans, Mac & cheese and fruit) I ate the fruit I did not like anything else. Then we made a craft after dinner (it was a turkey) Everyone was very nice and the RMH was very nice, it is only 2 or 3 years old and it has 80 rooms. I think most of the time it is full, it is a few blocks away from the hospital so we took a taxi since we missed the shuttle that goes over to the hospital at 7:45am.
Everything went good at the hospital and we even had time to look around and guess what we found on the 3rd floor? We found the food court and it had a Chick-fil-a and a Subway, I love both of them, I was so happy now when we go there I will not have to eat the hospital food.
We arrived back home at 11:00 pm on tuesday night. I even got up and went to school on Wednesday.
Our neighborhood is going to have a fundraiser for me on November 30th at our clubhouse, so anyone is welcome to come.
Our next trip will be in two weeks,(Nov. 25)
Keep praying for me and please say a prayer for Hunters family because he lost his battle with NB on Nov, 6th.
Love Taylor
Monday, November 04, 2002 at 09:00 PM (CST)
Hello,
Our trip to Houston was a nightmare, we were suppose to leave Tampa at 4:20 pm last monday. We boarded the plane and we were on our way out to the runway and the pilot said that Atlanta (thats where we had to switch planes) was shut down due to the bad weather. So we sat out on the runway for about an hour, then when we finally arrived at Atlanta we then discovered that our flight to Houston was cancelled. We were put on a later flight and that was going to be at 8:45 which then got switched to 9:45 and then 11:00 pm. Houston was also getting bad weather so they did not want to fly. By the time we left Atlanta it was around 11:45 so we arrived in Houston at 1:30 am. We could not get off the plane in Houston because they did not have a gate for our plane pull up to so we had to sit in the plane for about 45 minutes. This brings us to 2:15 and it was to late to check into the Ronald McDonald House so we had to get a Hotel. We got a room at a near by hotel and when we walked in the room it was hot and someone had been smoking a cigarette, still in the ashtray and mom said "Taylor we are not staying in this room, lets go!" We then told the man at the front desk that he better give us a clean room. The next room was better so we stayed. By the time we got to bed it was 3:00 am.
We had to be at the hospital at 9:30 Tuesday morning and this was a much better day for us. We took a taxi to the hospital and was there in about 25 minutes. Everyone is so nice and the hospital is beautiful. They had to access my mediport and draw blood, make sure I was ready for the vaccine and then they took the vaccine out to thaw. I received the shot at 1:30 and we were able to leave at 2:30 and that gave us enough time to get a taxi back to the airport and our plane left at 4:30, arrived in Atlanta and had just enough time to find our other plane and arrived in Tampa at our scheduled time of 10:00pm.
Wednesday I was too tired to go to school so I stayed home to rest. I did go to a halloween carnival wednesday night and then school on thursday and trick or treating thursday night. Friday after school I went to our local festival called the Flap Jack Festival. I rode on alot of rides and ate cotton candy.
Saturday morning we went to the parade and we got more candy. We even got to see Jeb Bush at the festival.
Then saturday night we went to some friends for dinner.
Sunday we went over to Aunt Cathys house because mom and dad had tickets to the Bucs football game and they were playing the Minnesota Vikings.
Today I had to go back to the clinic to get another punch biopsy of the other arm. Two stiches were needed so now both arms look the same. I should not have to get any more of them.
We do not know if the vaccine is working and we won't until I get more scans (in about another month) So keep the prayers coming.
Please say extra prays for two boys that we meet in NY, they are losing the battle with this terrible disease and they need alot of prayers. Their names our Hunter and Jacob. They both have web pages and if are stong enough to read them the web address is
www.caringbridge.com/page/huntersfight
www.caringbridge.com/wi/jacobpeters
Thanks for all your prayers,
Love Taylor
Monday, October 28, 2002 at 12:05 PM (CST)
It was Hi everyone and Happy Halloween,
I'm feeling better now and I think my body has finally recovered from that last round of chemo. That is very good becuase mom and me are getting packed for our second trip to Houston. Our flight leaves at 4:20 today and as long as we get the vaccine inj. right away Tuesday morning we will leave Houston at 4:30 and get back to Tampa at 10:00 on Tues. It shouldn't take any extra time this trip becuase we have signed all the paperwork.
For most of the two weeks since our last trip I wasn't feeling good at all. On the 18th I started running a fever and my temp did go over 101 at night but when I would wake up it went down so mom and dad didn't take me to the hosp. Over the weekend I continued to have a low grade fever but it didnt go back over 101. Mom and dad knew I wasn't feeling good becuase I didn't eat hardly anything and I didn't feel like doing anything either. It was dads birthday on friday too so we let them get out for a while.
On Monday the 21st I had to go to the St. Pete Clinic to get a "punch biopsy" on my arm where they gave me the vaccine inj. so the doctors could make sure the vaccine is dead and not starting more tumors. They haven't had any problems with this but they want to be sure. The biopsy was not any fun at all, they had to cut a small piece of skin and meat out of my arm. Dr. Grana decided to give me sleepy medicine to make it easier for me, that's what I wanted them to do also, they gave me the two medicines to knock me out and after a few minutes I told them they better give me more becuase I wasn't sleeping. Then I told dad that it felt like I was in outer space and everything was moving. I thought that dad had a pumkin head too.
Dr. Grana also thought she could here something in my lungs when she was checking me out so she ordered an Xray. The Xray showed that one of my lungs had the start of pneumonia so they put me on an antibiotic for that. It started working pretty quickly and by Wed. I was feeling much better and I started eating again.
I finally went back to school on Thursday. It was good to get back even though I was nervous about going after staying home with mom for so long.
On friday my cousin Brian came over to hang out with Landon and me so Mom and dad could go out to a Halloween party at the club house.
I also went to a couple of parties over the weekend and got a bunch of candy. Our church had 'Trunk or Treat" and there were lots and lots of kids there.
Now it is time to go back for my second inj. so I could really use a lot of prayers that this is what will finally get rid of the cancer for good!!!!
Thank you for all the prayers, I love you and I'll talk to you soon
Tuesday, October 15, 2002 at 09:11 PM (CDT)
Hello from Texas,
First let me tell you that I received my first vaccine shot today and boy did that hurt, they used a big needle and they had to do it in my arm (I did scream). My daddy came with me this time and we left monday afternoon and we were suppose to be coming home tonight but the doctor got called away and so she was not able to give me my vaccine until later so we missed our flight (only by 20 minutes). We stayed at the Ronald McDonald House last night, they only charge $15.00 a night and tonight we had to get a hotel since we were by the airport, we had to return the rental car and to take a taxi back to Ronald would have cost us $30.00 to get there and $30.00 back so we are staying right next to the airport and the room was $50.00.
I really liked the doctor and the nurses they were all very nice and the hospital was really nice too. Texas is colder than Florida so next time I am going to make sure I bring warmer clothes.
When I get home tomorrow I will have to go right to the clinic because my blood is low and I might need to get some red blood cells. I was at 7.9 and they usually transfuse if it goes under 8.
The side effects of the vaccine might start in 3 to 6 days and they include flu like symptoms, bone pain, head aches, and pain at the site of the injection, These are the more common ones.
We are praying so hard that this works because this time after chemo I just did not feel good at all. The week after chemo I was not able to go to school because I had diarrhea for 7 days, ran a low fever for 3 days, did not feel like eating anything, and basically felt terrible!!
Then last week I had a doctors appt. monday morning and I had a bone scan on thursday and another bone marrow aspirate on friday, (I needed both to give the doctor in Texas)
I did have a pretty good weekend, friday night my friend Madi spent the night and Saturday Landon and I were both invited to our friend Andrea's halloween birthday party and then Saturday night I spent the night at Madi's house. I did get a little home sick but managed to stay the whole night. I woke up at 6:00 the next morning and I wanted to go home so dad came and got me. (I think I just really missed mom, since we have been together 24/7 for the past 2 weeks)
We need to return to Texas in two weeks and next time mom will come with me.
I am going to be one of the cats from Josie and the Pussy Cats for halloween and Landon is going to be a Ninja.
Thanks for your prayers and I will update again next week and mom will try to get new pictures in by thursday so be sure to look.
Love Taylor
Monday, September 30, 2002 at 12:50 PM (CDT)
Hello,
I finished another round of chemo and I am so happy to be home, I just hate to stay in the hospital. I missed all my friends and I was very sad, I did have one friend in the hospital her name is Christina and she has luekemia. We went to craft class and bingo together. During the week we both spoke with the Stephanie she is with child life and we told her all the things we did not like about the hospital and all the things we did like. I also had expressed my feelings as to why I can't live a normal life and why did this have to happen to me. Christina felt the same way.
The only good thing about this stay was that I had another MRI and a CT scan and guess what?? The larger tumor in my brain has decreased at least by 50% and the two smaller ones were almost to small to see. So that means I am going to Houston, Texas to get my vaccine.
We are trying to get all the arrangements made and if everything works out I will be there in about three weeks.
I will let you know all the details when we know what is going on.
I did not go to school today because I am not feeling to good, I am just a little week from having diarrhea, I had to get up a few time last night to go. Mom wanted me to rest and drink lost of liquids today so I have been in my room doing my homework. My counts will start to go down so I don't know if I will be going to school at all this week.
I'm sure I will be needing blood again by the end of the week.
Thank you so much for the prayers, God is listening!!!
Love Always, Taylor
Wednesday, September 18, 2002 at 08:51 PM (CDT)
Hello,
I was finally able to have my birthday party friday night and I had alot of fun, I did not have a sleep over but I will have one soon. Mom thought it would be best to have the sleep over when I am feeling better because the last week and a half I just have not been feeling to good. As far as my fever last week it went away and I did not have to go into the hospital. I did go into the clinic on Wednesday and I still had a low fever but everything checked out ok.
I did have a busy weekend because I was invited to two birthday party's on saturday, one at 10:00 til noon and the other one started at 3:30 and that was a sleepover. I did have alot of fun but it also wore me out a little bit. For some reason I just don't feel like eating and when I do I feel sick and thats making me very tired. I have been going to school this week but my teacher said I just am not myself and she called mom today because she said I just looked so tired and I wasn't feeling to good. So mom picked me up around noon, and brought me to the clinic at 1:30. I did lose about four pounds with in the last month.
The bad news is that the doctors want to keep me on the hard chemo because the tumor in my brain really needs to shrink and until that happens I have to continue the five day chemo. So next week I will be back in the hospital (unless my platelets are too low) they did go down a little so they need to be higher in order to start chemo.
I did get lots of wonderful presents and I will enjoy alot of them when I go back in the hospital. And of course I have been shopping with my birthday money.
I will be getting a CT scan and a MRI next week so pray really, really hard and just maybe my tumor has shrunk even more!!!!!
Hugs and Kisses to you all!!!
Love Taylor
PS. It is still going to be a few more weeks before my wig is here.
Tuesday, September 10, 2002 at 11:09 PM (CDT)
Hello,
On the night of my birthday I started to get a low fever, it did stay under 101. I had gone to the clinic after school and I needed blood so they typed and crossed and ordered my blood so I could get it on friday. thursday morning mom did call to see it I could get my blod on thursday at St. Pete and I guess they were too busy at that clinic so I had to wait.
Thursday I did not go to school and that night again I had a fever, just under 101. (Remember anything over 101 I have to be admitted to the hospital)
Friday morning I was getting my blood at the Tampa clinic and my fever then went over 101 and they said I had to go to the hospital, I was so upset I was crying I did not want to go. And if you remember my birthday party was planned for friday night. Mom had to call 20 girls and tell them I had to postpone my party.
When I did get over to the hospital friday after I received my blood the nurses (and patients)all knew that I was very upset about my birthday party so they tried to cheer me up. When I walked in my room they had it all decorated and they even had a cake and presents for me.
My fever did get up to 103, but by saturday it was gone. They stared me on an antibiotic right away. I was able to get out on sunday,(I think that they knew how happy it would make me)and it did I was not home more than 5 minutes and my friends were calling me.
Now as for tonight my fever is back and mom is going to stay up and watch me. It did get to be 101.8 and dad called the doctor and since nothing grew in the blood culture that they took on friday he said I did not have to be admitted. So hopefully it goes away because mom rescheduled my party for this friday night.
I think I may need more blood and we will find out in the morning at the clinic.
Thanks for the prayers,
Love Taylor
Monday, September 02, 2002 at 07:47 PM (CDT)
Hello Everyone!
I was in the hospital all last week, we checked in on Monday and I got out on Friday. I did not like this stay at all, I just wanted to be home and in school, I was sad and just not myself. The only good thing about it was that I got to be roommates with my friend Emily.
Tuesday I had another MRI done of my brain, the tumor has only decreased by 10%, but they don't know if it is actually dead or alive. It was broken up compared to last time so it could just be a dead tumor!!
Wednesday I had my bone marrow aspirates and biopsies and it was the worst ones I have ever had. For some reason the sleepy medicine just was not working and they gave me more than the recommended dose. I was still very much awake and I felt alot of pain! The only thing I could do was hold mom's hand and scream. The doctor still does not know why I could feel so much, they said with all the medicine they gave me it should have put a horse to sleep. It must have been counteracting with one of the other drugs I was getting, like the steroids. Mom carried me back to my room and both of us were crying, I think it was almost as hard on mom because she had to watch all of this and she could feel the pain just by looking into my eyes. I was very upset and in pain so I just wanted to go home. I was sore until about sunday then the pain wasn't as bad.
Friday when I woke up I said "I'm ready to go home now!" We did not get out until about 11:00 am. and we went right to the school and had lunch with Landon on his birthday!!!
Before we left the hospital the doctor had just read my biopsy reports and the good news is that there was no evidence of disease! they did not see any cancer cells in my bone marrow!!
We still have to wait for my tumor to decrease at least 50% before I can go to Texas, so if the tumor is dead the body should absorb the dead tissue and we will soon see a change.
Landon had his birthday party at Chuck E Cheeses friday after school and we had a good time, Landon is now 5 and he is doing very well in school.
Mom and dad bought us one present for our birthdays and guess what it was? A trampoline!!! We just love it, dad also made it so it is only about 2 feet of the ground (for safety reasons)
My birthday is wednesday and I am having my party on friday at the Dance and Gymnastic Academy, I had it there last year and we had so much fun I wanted to have it there again.
Keep praying for me and hopefully the tumor is dead and now it just has to shrink!!
Love Taylor
Thursday, August 22, 2002 at 08:55 PM (CDT)
Hello Again,
Well another week has gone by and I am feeling great, and the last time I wrote I told you that I had to drop out of cheerleading, well I am back on the team!! I went to practice last thursday just to be with my friend Madi and I ended up practicing with them and decided that I really do want to cheer. So on saturday I got certified and I am now on the Pop Warner Pasco Preditors cheerleading team!
Then on friday when I went to school I found out that I wasn't going to be in the first grade -- they moved me up to SECOND GRADE!!!! They tested all the kids the first four days of school and they said I was smart enough to be in with the second graders, I was so happy!!!
Then after school I had another doctors appointment and they were thinking that I would need blood or platelets, guess what-- I did not need either one, my blood was low but not low enough to transfuse. So that just made my friday even better.
Saturday after I got certified I played with my friend Andrea and then at 4:00 I had a birthday party to go to (Taylor's) and she had 12 girls spend the night. We had so much fun, we stayed up until 1:00 am.
Sunday the party was still going strong so mom,dad and Landon went to church without me. We start our CCD classes next sunday and then I will be preparing to receive my first communion.
Landon is doing great in school and he has received a star every day this week which means he will be able to pick out a toy from treasure box. Saturday dad signed Landon up for t-ball, he wanted to play again and they tried to get him in a hand pitched game but he has to be 7 before that can happen.
I am staying busy and I just love it, I now have cheer practice on tuesdays and thursdays from 6:00 to 8:00.
When I get home I just have enough time to shower get a snack and then I am off to bed. So I have to get all my homework done as soon as I get home from school.
I will be cheering my first game on saturday morning at 10:00am. I'm sure mom and dad will have all the cameras out.
I go back in for chemo on monday (8/26) and will be in for another 5 days. I will be tested during the week so we will be praying that this tumor is gone!!!!!
Thank you for your love and support!!!
Keep on praying!!!
Love Taylor
Thursday, August 15, 2002 at 10:38 AM (CDT)
Hello,
Well I made it thru another round of chemo and I finished my radiation treatments(a total of 19 days) I felt pretty good when I was in the hospital, some days I had to take a nap and I didn't feel like eating too much. I did make some money when I was in the hospital! I brought in all my nail polish and I put a sign on my door that read "Taylor's Nail Shop!" So for the first two days in the hospital I painted nails and I made $26.00. So on sunday mom took me to the mall and I wanted to go shopping at "Limited Too".
Grandma and Dakota spent the day with me on wednesday and they got to see how my radiation was done. Mom and dad take turns spending the night with me. I was able to come home friday afternoon. Saturday Grandpa, Grandma,Parker, Dakota and Hunter all went swimming with us for the last time, they stayed till about 4:00 and then left for the long drive home to Minnesota. We had alot of fun together and we will all miss them.
Monday we started school and I was feeling great! Landon was even ready to start kindergarden! We both had a great day, we will always be together for the first and last fifteen minutes everyday because we have the same homeroom teacher. So I was able to keep an eye on Landon and he did way to much talking the first day!!! The second day I told mom that Landon got in trouble again because he and another boy kept talking. Landon is making alot of friends and that is very exciting for him!! The third day of school Landon did better, I think he just needs to learn and "remember" all the rules. The teachers understand Landon because he is young, he will just be turning 5 on August 30th.
Wednesday when I woke up it took me 20 minutes to get moving because my legs hurt really bad, it seems to be more of the muscle and not the bone so mom and dad tried not to panic. I did go to school and they were a little sore but I did not to go home. After school on Monday and Weds. I had a doctors appt. and my counts are at 0, which means I do not have a immune system, the doctor did say it was OK for me to go to school because I love it so much. I just have to carry my hand sanitizer with me and stay away from anyone who might be feeling sick.(teachers keep an eye on things like that for me)
This morning I was feeling good but after our mid-morning snack my tummy started hurting so I went to the nurses office and she checked my temp. and it was a little above normal 99.2 so she called mom and I went home. I did not want to go home I just wanted mom to give me a tums or a zofran then go back to school. But being that my counts are still at zero mom said I will have to stay home.
My next doctors appt. is scheduled for friday afternoon, after school and they think that I will need blood and platelets. So in order to not miss out on Fun Friday at school we will have to then drive over to the hopsital and go to the short stay unit to get my blood products. Unless of course I don't feel good then we will go in morning to get what I need.
We are not for sure when I will get tested again, it will be soon but I am not sure if they want to do one more round of chemo first.
I did have to drop out of cheerleading because it was just to much for me and after one practice my bones really hurt so mom thought it would be best to wait, so now I will do Girl Scouts instead!!!
My wig should be here in about 3 more weeks and I can't wait because everyday when I go to the school cafeteria some of the kids always make fun of me and it makes me feel really sad. I did not tell mom and dad until last night and mom said she will go to the school and take care of the problem!!
Mom is going to update the pictures again!!!
Thanks for your prayers!!!
Love Taylor
Sunday, August 04, 2002 at 09:11 PM (CDT)
Hello,
I just got back from spending the weekend at one of the hotels at Disney with my whole family and all of my cousins from Florida, plus grandma and grandpa and Parker,Dakota,and Hunter. We had a great time, there were 3 pools and a water slide. We had one pool right outside of our rooms. I did alot of swimming and walking around on the paths between the pools. It was really fun to have all of my cousins around to play with. Grandma and Grandpa surprised me and Landon last monday when they showed up here with Parker,Dakota and Hunter because no one told us they were coming.
I'm glad they came when they did because I was feeling good all week and only had to go to the clinic to get my counts checked. Dakota went with to the clinic one day. I would hold her hand when I got my g-csf shots. I had to get a shot every day for the last 2 weeks because my counts didn't come up as fast as they have in the past. Since I have had so much chemo it will get harder for my body to recover.
I really need a lot of prayers right now because my counts are high enough to start another round of chemo. Which is what I have to do tomorrow(8/5) becuase we got another MRI on July 19 and it showed no change in the tumors in my brain. The only good news is that they were not any bigger. Because of a mix up the last time I was in the hospital they only gave me one chemo but they did increase the dose.This time I will get the Irinotecan and cytoxin. I will also have to get 4 more doses of radiation. This will only be to the biggest tumor and not my whole brain.
Please say some extra prayers that this combination of stuff will at least shrink the tumors and clear my bone marrow because the tumor has to be shrunk at least 50% and at least one bone marrow asperate has to be clear before I can go to Houston TX to try my vaccine, which I think is done but just needs to be tested.Which the testing should almost be done also. I hope something works pretty soon because I really don't like the hospital stays any more!
I went to get fitted for a wig last friday(8/2). They said it would be ready in probably 3 to 6 weeks. I'm getting excited about having hair again, thanks to "The Hair Club" and the people that donate hair. They use real hair and I will even be able to swim with it and use hair clips and all that normal stuff.
Thank you for keeping me and my family in your prayers.
Hopefully I will be feeling good enough after this round of chemo so I can start first grade on Mom's birthday, Aug 12.
I will be in the hospital all week so feel free to call or visit. If I'm not feeling good mom or dad will take a message. ACH phone number is 800-456-4543
Love Always, Taylor
Tuesday, July 16, 2002 at 09:13 PM (CDT)
Hello,
Well it's time to check back in the hospital again for another 5 days of chemo, we have to be there tomorrow morning (7/17). I have been getting radiation everyday and I have at least 4 more days left, I don't like driving everyday to the hospital, but thats almost over!!!
Dad had to go out of town for 4 days so Landon is going to stay with Auntie Cathy, and he was excited about that, he could not wait to go fishing with Matt in the pond. He packed his fishing pole and his jigs.
I have been feeling better the last few days and the steroids have really been kicking in- meaning I am hungry all the time!!! I have really big cheeks - that will go away when I don't have to take the steroids anymore.
Friday night I had two of my friends spend the night (Madi and Andrea) we had a make over party and stayed up late!! I was very happy to spend time with my friends again.
Sometimes I don't feel like doing to much, so I just draw pictures or color. I do have more energy than what the doctors thought I would have after chemo, and even while getting radiation. The best part is that I did not have to get any blood products (blood or platelets) this time. My blood counts never hit bottom, so my immune system was never that low!!! Mom and I even went shopping in the mall and I got a new rolling back pack for school and some new clothes.
I will be getting an MRI on friday(11:00 a.m.) of my brain to see if the chemo and radiation are working so pray really hard that the tumor is gone! And I hope I will not get so sick this time with the chemo because last time was no fun at all and now they are going to add another chemo so I will be getting two different kinds.
Please feel free to visit me or call us anytime!! The hospital number is 800-456-4543. If it's not a good time we will just let you know.
Love Always, Taylor
Monday, July 08, 2002 at 10:30 PM (CDT)
Hello,
My week has been busy and I have been feeling a little tired, we have to make our daily trips to St. Pete so I can get my radiation, it takes us about 50-60 minutes to get there. Then the radiation only takes about five minutes and then we get in the car and head back home. Today I did have a doctors appt. to check my blood counts and they still look good, I did not need any blood or platelets, the nurses think that they will do down this week, so I will get checked again on friday. I am more tired than normal and I need to take a nap during the day.
My tummy still hurts and I have had diarrhea for the past three days. I don't feel like doing to much so I have been watching alot of tv. I try to eat alot in the morning because my tummy gets upset during the day and then I don't feel like eating much. Today when they weighed me I had lost 2 pounds.
We had a fun 4th, as soon as we woke up dad took us the the fireworks store and we bought alot of fireworks, dads friends (Troy and Josh) bought some too. When we got home me and Landon were so excited we just had to have dad light some off. I think dad, Troy and Josh were anxious too. Then that night we all went to our neighbors house and they invited alot of people and everyone had fireworks, so our fireworks show lasted for about one and a half hours. The best part about it was we did not have to get in the car and drive anywhere!!!
Then Saturday me and Landon stayed with Auntie Cathy and mom and dad went to the race with Troy and Josh. Troy even bought me a Jeff Gordon do-rag and pin and he bought Landon a Mark Martin Car. My cousin Matt even bought some fireworks so we got to see more saturday night.
I do have some really good news to tell you, the vaccine that we had growing in Texas that stopped growing, well the doctor had froze some of my cells and when the first ones stopped growing she started growing the second half and guess what--- they are done!!!! my vaccine is almost ready, they are testing it now and if everything is ok then it will be ready in three week. They will keep it for me until I am ready so when I get rid of my tumor we will fly out to Texas!!! I can still have some cancer in my body but not too much, so pray really hard that I will be able to get this vaccine and it works to take all my cancer away so it never comes back again.
I still have to finish my radiation and get one more round of chemo and we can only pray that the tumor is gone!!!
I Love, Love, Love you all!!!!
Taylor
P.S. I finally have new pictures so check them out
and guess what I lost my other front tooth last night so now I have a really big hole in my smile!!! (mom still has to get them pictures developed)
Monday, July 01, 2002 at 09:44 PM (CDT)
Hello,
I started chemo on Thursday and the doctors all decided to go with a chemo called Irinotecan, I have not had it before. So by friday morning I was throwing up (mom counted 14 times)and then diarrhea soon followed. I could not even stand up I felt so dizzy and my head was really hurting so I was in bad shape.My friend Andrea came to visit me and I just could not even talk I felt so bad. I finally fell asleep at 2:00 and slept until 7:00 friday night. When I woke up I felt a little better but I still had some diarrhea,(my butt was really sore). My head still hurt so mom spent alot of time rubbing it and my stomach. The doctors just gave me more nausea medicine, and also a steroid called decadron, that helps nausea and it also prevents the tumor in my head from swelling during chemo and radiation so I will be on this for a while.
Saturday I felt a little better, I was not throwing up any more but my tummy and head still hurt a little bit. I just wanted to go home and I was starting to miss my cat (Sweetheart) I did feel a little better when an old hospital
friend (Abby) came to visit me, I was happy to see her and it put a smile on my face.
Sunday I felt better my head was not hurting and the cramping in my stomach went away, the only problem was the steroids were starting to take effect!!! I was very sad, then mad, I really was missing Sweetheart and I wanted to go home. Aunt Barb and Uncle Karl came to visit and I just laid in bed with my pink blanket over my head. Then my friends Madi and Taylor walked in with their family and I decided to come out from my blanket and talk with my friends. I was happy to see them and it put a smile on my face for the first time that day. I even showed them around the hospital. I was starting to get tired and they could tell so everyone went home and I crawled in bed to nap and within a few minutes another good friend Lauren and her mom came to visit but I was so tired I told them I had to take a nap so they had to leave. Mom went out in the hall and visited for a while and I think I fell asleep as soon as they walked out the door. I was able to eat a little bit today but not to much.
Today I woke up in a bad mood, I wanted to go home and mom and dad heard those words many times!!"I WANT TO GO HOME!"
Then the nurse came in and said I could go home tonight, so that was good news I just did not want to wait that long.
I had a few visitors today to but I just was not my happy self. One of my old hospital roommates Emily and her mom came to visit and so did Bryan and his mom. Then a friend from preschool (and church) Sami and Mimi and their mom came to visit but soon after that the nurse came to get me to take me over to the neighboring hospital (Bayfront) so I could start radiation. They made another mold of my head and they decided to do radiation to my whole brain. Of course there are side effects to everything and we decided that nothing could be more important than to keep me here with my family. So we will deal with everything else later, when I get older. I will have 15 days of radiation and one more cycle of chemo (the same drug along with another chemo that they want to add) then I will have another CT scan and MRI. We will go from there.
I has happy to be home but I still felt very sad and my tummy was hurting. Dad made me eggs and toast (I only like the yolk, I dip my toast in it) I felt a little better, talked briefly spoke with a few friends then I laid on the couch and watched TV.
Tomorrow we will drive back to the hospital for radiation which only takes a few minutes, so we should be in and out within 30 minutes. We have to do this for 15 days not including the weekends, but I have to have my blood checked twice a week, so we will be staying busy.
Please keep praying that this works and if we get the tumor to go away we are coming up with a plan to follow, we have a few thing in mind and that will be either going to , Houston, New York or Philadelphia.
Lots of Love,
Taylor
Thursday, June 27, 2002 at 11:42 AM (CDT)
Hello,
I don't have much time to talk because we just got a call and the doctor want to admit us today. We are going to start chemo today and look into doing radiation. We will discuss what chemos we will use when we go in. The doctors don't really know which ones to use and if they will work or not. The chemo can't be to strong because I have had so much already.
Please call us in the hospital 800-456-4543
I am not sure how long we well be there. The days can be very long and visitors are welcome!!!!!
I will give you more news later!!
Please pray very hard that the chemo will work!!!!
Love, Taylor
Monday, June 24, 2002 at 12:05 PM (CDT)
Hello Everyone,
I have some bad news and I need you all to pray very hard for me once again. I had my three month testing done, bonemarrow, CT scan, Bone scan and an MRI. We have the results back and they are not good. My cancer is back and its mad!! I have it in my bone marrow and also my brain. We are waiting for the doctors to have a meeting and tell us what we can do, they have to review the MRI and pinpoint exactly there in my brain it is because some areas may not even be treatable. They will call us tommorrow and we will go from there.
I am still feeling great but I need all the prayers I can get.
Love,Taylor
Sunday, May 05, 2002 at 10:28 PM (CDT)
Hello,
I just want to let all of you know that I am feeling great and love school.
Now for the bad new, my vaccine that was growing in Texas stopped growing and just fizzled out so now we have nothing. Which also means I have to start getting some type of treatment again. My bone marrow is still clean but we also know that Neuroblastoma is a monster and it will come back so we have to stay on top of things. Mom told the doctors that I really would like to finish school, so we have three weeks to decide what we are going to do. The only thing the doctors in Tampa can offer is chemo, and we could do that on an outpatient basis but I would still have low blood counts and need transfusions and it will also be hard on my bonemarrow. (Chemo in not a cure)
The doctors in Texas are going to be calling us back this week to see if I am able to get in any of the other studies that they are doing.
The doctors in New York want me to come back and try the new antibody study that they are doing. We will get my blood tested to see if I still have a HAMA, if I do they want to give me two strong rounds of chemo to get ride of the HAMA so I can start the antibodies. If we do this then we will have to be in New York for two weeks at a time and then come back every third week, which means we would be in NY for two weeks out of a month, and of course this could go on for two years.
Please pray that a cure will soon be found so I will never have to have chemo again!!!
I really like the fact that my hair (peachfuzz) is starting to grow and it really makes me feel like a normal kid again. Every one in school just loves to rub my head because my hair is so soft!!!!(I don't mind )
Please pray that we make the right decision!!! I will let you know what that will be when we decide.
All my love, Taylor
Monday, April 08, 2002 at 05:35 PM (CDT)
Hello,
I have been staying very busy having a good time. It has been five weeks since my last chemo so I have been able to go to school.
We even went on a field trip to Cypress Gardens on friday (April 5) mom went along too. We had a week off for spring break and everyday we were in the sun having fun, we went to the beach with friends, adventure island, boating, and the rest of the time we were in the pool. My head is sooooo tan.
Now for my medical news! On March 22 I had a bone scan and a CT scan and both scans came back good, they did not show any signs of cancer. Then on the 27th I had a bone marrow aspirate, and they found two cells that did not look normal so the doctors wanted to do a bone marrow biopsy (I don't like this procedure because it hurts and I am always sore for a few days)but we had to do it. My biopsy was done on April 3rd and we had to wait until friday the 5th for the results!! Well, dad called to get the news (me and mom were at Cypress Gardens) and he called us as soon as dad found out, the doctors said THERE IS NO CANCER CELLS FOUND IN MY BONE MARROW!!!!! I AM FREE AGAIN!!!!
We can stop chemo and wait for the vaccine to be ready in Texas (beginning of June).
I am so happy and guess what if you look really close you can see that I am starting to get my hair back again!!!!
Thank you so much for keeping me in your prayers because God is helping me fight this once again! Now we just have to pray that the vaccine works!!!
I can finish out the school year and I just love going and being with my friends!
Love Always, Taylor
Thursday, March 07, 2002 at 06:40 PM (CST)
Hello All,
I know it has been a very long time, but no news is good news, right?
The past two months have been busy, last week I finished my seventh round of chemo and I am still doing very well. I never like to eat too much while I am in the hospital and a few days after chemo, but other than that I do just fine. I am able to keep weight on and I feel great most of the time. I was getting chemo every third week but now I am going to get it every fourth week. That allows my blood counts to get back to normal and also I have been able to go to school more, I have been going on the average of two weeks per month.
I love school and being with all my friends, I have even been spending the night at my friend Madison's house and Kendall's house.
I was going to play T-ball but after one practice I just decided that it wasn't for me, so mom is going to get me into dance or something. Landon is in T-ball and just loves it, he thinks it is pretty cool to be wearing a uniform.
Mom and dad have been able to get out and really enjoy themselves, thanks to Grampa and Grandma who will be here for another month (they are snowbirds from Minnesota)
The vaccine is still growning in Texas and will be done in about two or three months.
When it is finished growing we will have to fly to Houston for once a week for the first month and then once a month for a year. We only need to be there for one or two days at a time. That is going to be alot of flying so if you know of anyone who would like to donate their miles we would gladly accept.
I am going to get tested in about two weeks because right now we really don't know if the chemo is still working. We can only pray that it is and I don't have any cancer still in my bone marrow or anywhere else.
My doctors want to keep me on the chemo because I have been doing so well on it and they really don't know what else to do. The vaccine just has to work!!!!
I still don't have any hair and sometimes people look at me funny but I try not to let it bother me,today I did get a little sad because two boys were laughing at me and were calling me baldy. Mom said they are just jealous because their heads were not as pretty as mine. My friend Madi told me that I was lucky not to have hair (she has long hair) and the wind kept blowing it in her face, and I didn't had any problems with that!!
I have to go to the clinic twice a week to get my counts checked, I go again tomorrow and I might need blood or platelets. I have been getting a transfusion at least once after chemo(normally between 7-10 after)
Thank You so much for keeping me in your prayers, and pray that this vaccine will work!!
Love to you All!
Taylor
Thursday, January 10, 2002 at 08:35 PM (CST)
Happy New Year!!
I know it has been over a month since my last update so I do have alot to tell you.
I now have had five rounds of chemo and I have been able to keep the fevers away. I needed a transfusion just once after this last round (both blood and platelets)then I was good to go.
We had a wonderful Christmas and we were able to go to most of our christmas parties.
Mom and dad even found us a babysitter and I just love her, her name is Caitlyn, she lives just a few minutes away.
I was able to go to the Britney Spears concert and I just loved it, mom said I was at the edge of my seat the entire time, not to mention all the singing I was doing!!! I loved the concert and it wasn't even to loud for me.
I got alot of neat stuff for christmas(so did Landon) and now we need a bigger house.
We got some help from the Childrens Cancer Center and also from one of the Tampa Bay Lightning Players!!
My auntie Tracy, uncle Rick and my cousins Caleb, Carly and Connor came to stay with us for a week and we had so much fun, I started to miss them the day they left. My cousin Carly slept with me everynight and now I miss her.
School started again on monday and I have been going every day, this is the first time I was able to finish the week!
Monday mom and dad are going to talk to the doctors and together they are going to try and come up with a plan on what to do next.
Nobody really knows what will be the best thing for me at this point. So I might start my 6th round of chemo on monday.
We did get some very good news on wednesday the doctor from Texas called and said that the bone marrow that we sent her a month ago IS STARTING TO GROW THE VACCINE!!!! It should take another three months to grow and then we will fly to Texas and they will put the vaccine in me. We don't know how well this is working because it is still very new, but we want to try anything we can.
I have been feeling great and I have so much energy, I love school and seeing all my friends. We try and stay busy as much as possible and we love to get together with friends.
My Uncle Mike (dad's brother) is now visiting from Minnesota and will be here a week. Dad, grandpa, uncle Mike and Uncle Steve went fishing today and they caught 14 grouper they were all huge!!!
Thank you all for keeping me in your prayers and we can only pray that this vaccine will work!!
Love, Taylor
Tuesday, December 04, 2001 at 07:58 PM (CST)
Hello to All,
I am doing very well, (mom has been having a few moments) but other than that we are just fine. We had a great Thanksgiving, my counts were very low so we spent the day fishing on our boat with just the four of us. We had a great day and caught lots of fish, then on friday we had our traditional thanksgiving meal with turkey and mashed potatoes.
I had to get blood once and platelets twice, and guess what I have been going to school again. Last week I went for three days in a row and now this week I will be able to go for four days. I went to school yesterday and today I had to get a bone marrow aspirate & biopsy (I hate them)we thought that I was going to be starting chemo again today but my platelets were too low, so now I will wait until next monday to start my fith round of chemo. We were going to start chemo last week (I was ready at the time) but we were waiting for the doctors in Texas to send a kit to my doctors here. The doctors in Texas are working on a vaccine and they are growing it from the bone marrow. We have a 50/50 chance that it will grow. It would have been better chances if we would have sent my bone marrow before I started chemo again but mom and dad did not discover this until I had already received chemo.
We will find out tomorrow if my bone marrow still has cancer or not, the doctors think that I should stay on the chemo even if my bone marrow is clean. I really hate having cancer, we can only pray that a new treatment will come out soon!!!
We are going to stay very busy this week since I will be going back in on monday. I hope I will not have to spend christmas in the hospital!!!
Look for new pictures!!
Love Taylor
Wednesday, November 14, 2001 at 09:38 PM (CST)
Hello Again,
I am back in the hospital getting my fourth round of chemo, we checked in Tuesday morning. We were going to go in Monday but the hospital was getting six admissions so when they asked if Tuesday would be ok we gladly accepted. That also meant that I could go to school another day (yes) I was able to go to school three days last week (tues, weds, & thur.) Friday I had another routine clinic visit (my blood counts were good) After my appt. friday morning me and mom went to a childrens cancer fishing derby
and I had a great time. I caught four fish, of course they are not as big as the ones I catch with my dad, but I still had a lot of fun. I even got a new fishing pole, tackle box and alot of other goodies. This was sponsored by The Steve Yerrid Foundation so we would like to thank them for a wonderful time. Channel 10 news even interviewed mom and I and it was televised monday morning.
Saturday we went to Busch gardens with Lisa, Steve (from MN) Barb, Tanner,and Matt. Then we picked dad and Landon up at the airport they got in around 7:00pm and I am happy to say that my dad shot a nine point buck. We were very happy to see them both, me and mom were starting to really miss the boys.
Then Lisa and Steve picked up Chris (Chrissy from MN, sister of crazy Jenny) and met us at our house and we all stayed up late saturday night visiting.
Then sunday we all went to the park and had a great day.
Yesterday mom asked one of the doctors if he had a plan for us if my bone marrow comes back clean and he still does not know what we should do. They all agreed that I am doing very well on the chemo so I should keep on getting it. But they don't know how long or how many rounds I should do!!!!!
I should get out of the hospital saturday afternoon, If you want to call me the number is 800-456-4543 Ext. 2470.
Thank you for keeping me in your prayers!
Love Taylor
Monday, November 05, 2001 at 09:47 PM (CST)
Hello
I was not able to go home from the hospital until wednesday morning,all do to the scratch on my leg that became infected. It is fine now and I was able to go trick or treating wednesday night so I was very happy.
I did have to get blood and platelets (twice) when I was in the hospital. I sure was happy to go home.
Thursday morning mom and dad took Landon and I to a park (Hillsborough River State Park) we had alot of fun. We even took my barbie jeep and Landons 4 wheeler and went on some trails by the river.
Then friday we brought Landon and dad to the airport, they went to Minnesota to go deer hunting. (No big bucks yet!!) I miss them already.
Mom and I are having fun doing girl things!!I even made a big fort in the living room, I think I used every blanket in the house. I didn't even have to worry about Landon tearing it down. We have been visiting friends and today we went to the mall and I got to "Build a Bear" thats the name of the store, I built a cat and bought her some clothes. (That was a birthday present)
I did have a doctors appointment today and I needed more platelets, I will go back on friday to get checked again. Mom told them that we will go back in for more chemo next monday (Nov. 12th). Dad and Landon come home saturday and our friend Chris (from Minnesota) is coming on friday to visit so we want to be home.
Thanks for keeping me in your prayers!
Love Taylor
Monday, October 29, 2001 at 09:19 PM (CST)
Hello,
I am in the hospital again and this time it is because of a fever that I had on saturday. I did not want to come back to the hospital so soon but I had to because my fever was over 101. That means I have to stay in for at least 3 days (72 hours) they run cultures on my blood and make sure I have no bacteria growing. So far everything is coming back negative so hopefully I will be able to go home tuesday night. When I came in on saturday night they thought I might have asthma because I was wheezing again, so they are still trying to figure out why I keep wheezing, it could be asthma, allergies or it could be sinus problems.
I really want to come home because the doctors and nurses just won't leave me alone, they keep checking my temp. and I even have to get breathing treatments with a nebulizer and I hate that. They even wake me up at night all the time. I always have to go to the bathroom a few times in the night and then I have to unplug my machine and bring my pole where ever I go. This is just no fun!!!!! I could tell you all kinds of stories but that could take forever so I won't.
I do have my own private room this time so that is nice, sometimes I have to share a room. That's always interesting, not only do we have to listen to my pump beeping but also the room mates pump as well. Then I have to make sure I go potty in the right hat (they monitor our urine). I also hate the food, I don't even like the milk!!!
I just want to be home!!!!!!
I did get to come home last monday night and I was doing really well, I had to get blood and platelets before I left so I was full of energy when I got home. Thursday afternoon Landon and I even went over to our friend Nicholas's house and his mom watched us while mom and dad went out for dinner (It was dad's birthday). Then friday night I even got to go "trunk or treating" at our church, I did get tired and a little cold but I had fun. Then saturday morning I was just very tired and part of that is from my counts being so low. I took a little nap in the afternoon and when I woke up I had a fever.
They gave me platelets shortly after I got there because they were only at 4,000 normal is 150,000 - 450,000. Then I had to get blood on sunday.
Today in the hospital I worked on some school work, I am feeling much better. I am just mad I have to stay another night.
I hope I will get to go home tomorrow, but now I have a sore on my leg (that started out as a scratch)It is now red and swollen and they think I might have a staff infection under that. All of this due to me having no white blood cells to fight off infections. Something so minor can turn into something very bad.
Please keep me in your prayers!!!
I Love you all, Taylor
Saturday, October 20, 2001 at 10:12 PM (CDT)
Hello,
Well this week ended a little differently than what I planned! I did go to school on Wednesday and I had a great time, my doctors appt. was thursday and I thought I would be back in school by 11:00 am. we were going to have a tea party at 1:45. When we got to my doctors appointment everything went great they said I did not need blood or platelets and then they said that I should start chemo right away. This took mom and me by surprise because we were told my platelets were too low on monday and they would not want to start. I guess my platelets jumped high enough that the doctor thought it would be best to do chemo right away. We do want to stay on top of things and not give this cancer a chance to grow so we stayed.
So at least I should not be in the hospital over Halloween, and Britney Spears concert was postponed until Dec. 18th. So I guess I will just have to wait.
I am staying busy in the hospital, I like to go to the toy room and make lots of crafts. I am still feeling good and I have not been getting sick from the chemo. All of the nurses have been so nice to me, they even watched me for a few hours on thursday because mom had to run home and pick up our overnight bags, get Landon from preschool and then bring him to our friends house. Since we were not expecting to stay we were not prepared and dad was even working out of town. Everything worked out very well and I did not mind mom being gone because the nurses and Kim (from the playroom) kepted me busy.
I think I will be able to go home monday night, as long as I drink lots of water. Last time mom even had to wake me up in the night to drink water and I should be able to do that again. The doctor said I have to be very well hydrated for at least 12 hours after chemo or I could get very sick.
Thank you all for keeping me in your prayers!
Love Taylor
Tuesday, October 16, 2001 at 08:22 PM (CDT)
Hello,
I had a very good day today, I went to school and had a lot of fun. I did not want to go at first but mom told me I had to and I'm glad she did, I need to get away from her sometimes!
I went to the doctor yesterday and I did need more platelets but my ANC was 900 so it was high enough for me to go to school. (anything over 500 is when I can be in public) my next appt. is thursday so I will be able to go to school tomorrow too. We still don't know when I will have my third round of chemo, we were thinking it would be this week but the doctors want my platelet counts to be higher.
I just can't be in the hospital on Oct. 28th because my mom and dad got me tickets to the Britney Spears concert. I am so excited I just love her!!!
If we can we will wait and start chemo on Oct. 29th and then I will be able to go to school all next week,I will just miss two mornings for my doctor appointments. But I guess the doctors will let us know what is best for me. Then I guess I will miss trick or treating again this year,(last year I was in NY) I will be able to go to our church they are having Trunk or treat on the 26th and that was really fun last year. We get to go trick or treating from car to car and they even have a costume contest. I am going to be a White(and pink)Barbie Kitty.
Please keep praying that my cancer will go away and the pain will never come back!!!
Thank you so much,
Love Taylor
Tuesday, October 09, 2001 at 07:56 PM (CDT)
Hello,
I am home and feeling a bit tired today!
I was able to come home last tuesday from the hospital, me and mom did not get home until 9:15 pm. we were happy to sleep in our own beds again. Wed. and Thur. I did not do too much until Auntie Sharon from Conn. and her daughter Monique (dad's cousin) and Sharons friend Martha all came to spend the weekend with us.
Friday I had another doctor's appt. and I needed platelets, so me and mom did not get home until 2:00 and then we had fun visiting our company.
Saturday we all went out on the boat and collected some shells and then on the way in we stopped and fished, and guess what I caught a big flounder!!! So we kept him and ate him for breakfast. We had a great day.
Sunday morning our company left and I was really starting to feel tired and I just did not want to do much. Mom and dad knew I was going to need blood because I was low on friday. Monday morning me and mom were back over in St. Pete and I needed blood and more platelets. We did get to hang out with Chris because he also needed platelets. So that took all day and I thought I would have felt better today but I am still tired and just don't feel to perky. One reason why I don't feel to good because I can't eat, I have two molars coming in on top and I have two loose teeth on the bottom in front. Plus, I have a little sore on the side of my tongue and I don't know if that is from bitting it or if it is a result from the chemo, either way it really hurts!!!
My next appt. is Thursday and I think I am going to need more blood. I do have a little bit of a fever so mom has to keep checking me tonight and make sure it does not go over 101, if it does we have to go to the hospital. Dad is even out of town tonight so I hope it goes away!!
We did get my test results back and the cancer is still in my bone marrow, the chemo does seem to be working so we will keep doing that until we can find something else to try.
Thank you so much for keeping me in your prayers!
I Love You, Taylor
Sunday, September 30, 2001 at 08:26 PM (CDT)
Hi Everyone,
I have been feeling great for the past week and I have been very busy. Right now I'm in the hospital getting some more Chemo. but I am still feeling very good.
The blood transfusion I got on Fri. the 21st was just what I needed. Dad had to talk me into going to get the blood becuase I wasn't sure if we have time to get everything ready for my delayed birthday party we were having on Sat.He told me I would have a lot more energy if I got it, And we would still have plenty of time to get ready. He was right about both things. We had my party at the dance studio and everyone had a great time and I was really happy to be able to keep up with all of my friends. Thanks everyone for all the great presents!
On Sunday we all went out on the boat and had another wonderful day We did some fishing ( Mom caught another big Spanish Mackerel),and we went to the beach and collected some shells to give to Auntie Sharon when she comes to visit this week. It was nice to get back to the beach since I hadn't been there since the begining of July. Since most of my hair was gonemom tried tokeep a hat on me but I got too hot with it on so I got a little sun on my head ,not bad though.
Monday meant another trip to the clinic. My ANC was up to 1100. That means I'm starting to have an immune sytem again and that I can go back to school. I also had to make a trip to the St. Pete clinic for platelets again, they aren't too bad to get though because they only take about an hour to get.
I got to go back to school on Tues. When I got home I did homework for almost 2 hours. I was a little nervous about going to school with no hair but not to much. I did wear a hat and my teacher said I could go with or without it, I took it of for a little while. My energy levels stayed very high all week and when dad asks where all the energyis from I just say "daa, I got blood". I went to school all day Wed. and Thursday also.
My trip to the St. Pete clinic on Fri. brings us up to where I'm at now, in for another round of the Topotecan and Cytoxin. My doctors said I did very well and my body recovered very well with the first round. They also said it would be best to do the next round as soon as possible. Mom and dad decided we might as well start it then(Friday). Dr. B. also did a bone marrow aspirate. His first look at the slides and he did not see any Nb. cells so now we can just wait and pray that the biopsies can back negative also. I should get out of the hospital on Wed. if everything goes as well as last time.
Thank you for continuing to think about and pray for me and all of my friends that are battling and WILL BEAT the cancer we have.
I Love You All
Taylor
Tuesday, September 18, 2001 at 09:25 PM (CDT)
Hello
I am happy to report that I have had a fairly good week, everyday I think I am getting stronger. Last week, Monday and Tuesday I was very tired and did not want to do much. Then thursday I had a doctor's appt. and they checked my blood and I needed platelets. We thought my platelets were getting low, because I have to get shots again in my legs and the ones from tuesday and wednesday left dark bruises.I hate getting the shots because they really hurt and I just scream, It never use to hurt that bad but mom told me that I am just too skinny and I don't have any fat on my legs anymore. And every time I scream my kitty Sweet Heart comes to see what is wrong, she really loves me.
Friday I was feeling pretty good and since school was closed due to the tropical storm I had one of my friends (Madi) come over and she stayed most of the day and when I did get a little tired then Landon played with her.
Saturday I was very tired and mom and dad thought that I might need blood but the doctors told us that if I did not get to bad then I could go in on sunday for a finger poke and they could check my blood.
Saturday night mom and dad just kepted checking on me to make sure I did not run a fever and I did just fine. Sunday morning I felt much better and had a pretty good day.
It was also mom and dad's 12th wedding anniversary.
We still have to be very careful so I don't get sick so that means I can't go into public places. Thursday the doctors said my ANC was at zero and that means I have no way to fight off any infection if I were to get one.
Monday I had to go back to the clinic and have my blood checked, I needed platelets again (which meant making a trip over to St. Pete to the hospital)and I was border line for needing blood so they wanted to wait with the blood and see if my body could make more on its own. My ANC was at 200 which is still very low. So now I will go back on friday and have them checked again.
When my body recovers then we will go in for another 5 days of chemo.
My hair is starting to fall out and I am not for sure how I feel about that, sometimes it makes me sad and other times I am laughing and putting my hair on Landon (he hates that).
Thank you for your continued prayers for all of us that are battling cancer.
GOD BLESS AMERICA!!
I LOVE YOU, TAYLOR
Sunday, September 09, 2001 at 08:49 PM (CDT)
Hello Everyone,
I got released from the hospital today and I just could not wait to get home and see my kitties, I missed them so much!! The good news is that my pain went away, my tummy hurts sometimes but that is from the chemo. I am still trying to eat more but that will take some time, everything tastes different now.The bad news is that all my hair is going to fall out and I don't want to lose my hair again.
My bone scan results were not to good, but the doctors really could not tell us if the abnormalities that they seen were new or if it is from previous disease, they were just considered abnormal!! I had spots show up on my legs and skull, and they were questionable before. I did have a few fevers and they think the cause of that was from my sinusitus, I am on an antibiotic for that. The doctor also thinks that is why my head hurt so bad.
I did make it to the play room a few times and made a few crafts. One of my favorite nurses (Whitney) from the CT dept. came to see me and she brought me a big bag and it was full of presents.(thank you)
I am feeling pretty good, a little week but at least I am not in any pain right now, so that means that the chemo did some good. We don't know how many cycles of chemo I will have, we have to talk with the doctors and come up with a plan. We still want to stay on the fenretinide and also see about going to New York again. The doctors really don't know what will work and what won't so we need to try as many things as we can. We do know that chemo is not a cure it will only buy me some time until some wonderful person can make a cure.
My blood counts are going to start to fall so we have to be carefull that I don't get sick. I will not be able to go back to school and I am really upset about that. Mom said maybe when I am feeling good and my bloodcounts are high we can go visit.
We are going to plan my birthday party again but we still don't know when, I think maybe right before I have to have more chemo.
Chris Becker is still in the hospital, he is going through his second transplant, he was two doors down from me. He even called me on the phone and sang Happy Birthday to me, then his dad delivered a present to me, and one for Landon too. Thanks Pat, Alison and Chris!!!
Sylvia (Jillian's mom) even came in to bring all of us dinner on thursday night, that was very thoughtful and greatly appreciated.It was also great to see her again, thanks Sylvia.
Thank you for keeping me in your prayers, Love Taylor
Wednesday, September 05, 2001 at 09:35 PM (CDT)
Hello,
My birthday was yesterday and it was one that I would like to forget. Dad had given me some morphine the night before because I was having some pain in my stomach and arms. I still did not sleep to good, the pain was not to bad but I having been having alot of nightmares and I kept waking up. Then our kitties have not been helping any because when they know you are awake they won't leave you alone, and they will see my feet moving under the covers and they attack my toes!!!
The morning of my birthday I slept until 11:00, mom tried to wake me up but I was still tired. I opened up my presents and liked everything but it still was hard to put a smile on my face. Mom and dad then told me it was time to go to the hospital and start chemo, and that we would have to postpone my birthday party that the worst part. I hate the hospital and I don't want to loose my hair. We packed up some of my new birthday presents (I got alot of arts & crafts) and left for the hospital, we did stop at Sweet Tomatoes to eat but once I got in the restaurant I just could not eat a thing.
By the time they checked me over and made sure everything was ok to start chemo it was around 10:30 pm. So it was after midnight before I got to bed and mom stayed with me. They did a few tests because they found that I was wheezing and did not know why, they gave me a breathing treatment and that helped a little. I had to have a pulse ox on my finger (looks like ET) so I had to get use to that again.
The nurses woke us up at 7:00 am, because I had to go down stairs to get an MRI, I did not like that test because the machine is very loud. Then when we got back to the room I had a tech bring a machine in for and EKG then when he left someone else came in with another machine and that was for a
echocardiogram. Then around noon they came to inject me for the bone scan, then at 3:00 I went upstairs for the scan.
I am starting to get really sensitive to smells so food has not been to appealing
to me.
The only test that we know the results of is the MRI and they did that one because of the pain that I sometimes get in the back of my head. It is OK, I do have Sinusitis again so I will be on an antibiotic for that.
Dad and Landon came back tonight so mom and dad could switch and dad will stay with me tonight. Then when mom got home we had to call her and let her know that I started getting a fever. I hope that goes away. We will have the bone scan results in the morning, pray pray pray. Mom was in the room watching the screens during the bone scan and when something lights up that is not a good thing and mom said I had a few area's that lite up. We can only pray that it is nothing bad!!
I Love You all, Taylor
Monday, September 03, 2001 at 07:44 PM (CDT)
Hello Everyone,
I have not been feeling very well the past few days, friday the pain in my arms started getting bad and I had to go back on the morphine.
Saturday morning mom and dad brought me into the emergency room at All Children's because not only did my arms hurt but so did the back of my head so I had a CT scan done. We spent most of the day in the ER, and they did not find anything on my head. We could not get one of the body because I have to drink a contrast first so that is something that has to be planned. It seems like things like this always happens on the weekends so nothing can be scheduled. Tomorrow morning mom will try and get me in for CT and bone scan of my entire body, so hopefully that will be on wednesday.
Tomorrow is my birthday and I want to go to the pottery studio and to Sweet Tomatoes (my favorite place to eat) but if my pain continues then we may have to start chemo, the pain was not as bad today because I did not have to take any morphine.
We have my birthday party planned for saturday so I am really looking forward to that. I don't want to do chemo but mom and dad told me that it would be best and it would help with the pain.
Pray really hard this week and maybe God will hear us!!
I Love you all, Taylor
Thursday, August 30, 2001 at 10:12 PM (CDT)
Hello Everyone,
I was having a good week until yesterday when my arm started hurting, last night it was starting to get bad so mom gave me some tylenol with codeine. I slept good and when I woke up it hurt a little and I just did not feel like going to school so I stayed home.
It was Landon's birthday today (he is now 4) so I went with mom and dad to Landon's preschool and we brought in some pizza's and cheetos and had Lunch with his class. Then we came home and Landon opened his birthday presents, he got a big squirt gun, goggles and a few boats so he was ready to go to the pool. I stayed in the house with mom because I did not want to go out in the hot sun. So I played with Landon's new Lego's (you can make almost anything with them now)
We did go out to eat and Landon got to pick the restaurant, he picked Red Lobster.
He ate and ate, he finished his shrimp and then he wanted mom and dad's, plus he ate some of my ceasar salad. I was feeling good until the end of dinner and then the pain in my arm started getting bad so we quickly hurried home so I could have some more tylenol w/codeine. Landon did not know why I was crying in the car so I told him "Landon I have cancer in my body" and Landon then said "Taylor, I wish you did not have cancer!"
Thank you for your prayers and for remembering all the kids with cancer!!
Happy 4th Birthday Landon!!!
Love, Taylor
Sunday, August 26, 2001 at 07:43 PM (CDT)
Hello Everyone!
Well I have to say I am starting to feel better every day now. Wednesday I was not able to go to school because after I took my medicine I got sick and I felt a little week. I have not been eating very much and my mom is even starting to call me skinny minny!! Her and dad have been trying really hard to buy things I like to eat and I think it is starting to work.
Thursday I did go to school but at 1:30 my tummy hurt so mom came to pick me up. She said my tummy probably was hurting because I did not eat my lunch. I did eat a little when I got home and did feel better. My pre-K teacher (Miss Judy) even came to my house to see me, I even painted her nails!
Friday morning my gold fish died (the one that I won at the state fair) I was very upset. I went to school and mom told me that after school we could go buy another fish. I ate a few bites of my lunch and so I was able to stay the whole day, I had a little more energy today!
My grandpa and grandma went back to Minnesota, we had fun when they were here and of course I had to help her make some cinnimon rolls. I am not much for sweets but Landon sure loves them, she even made extra to keep in the freezer.
We have been going to the pool almost everyday, we have to wait until 6 or 7:00 p.m. because I just cannot take the heat!
Yesterday morning we went swimming at 9:00 and stayed for about 1 1/2 hours and then it was getting to hot. Then me and mom met a few of our friends at a place called "You Do The Dishes" it is a paint your own pottery studio. I just loved it I wanted to paint everything, I want to back back there everyday!!! I painted a cat, a little vase and a plate (I put my hand print on it) There are so many things I want to make, mom will just have to bring me back.
Today mom and dad were sponsors for their new godchild, he was baptised today--Colton David Brown. He was born on July 16th.
Then this afternoon we went to our friends birthday party, she had it at a bowling alley. I think I bowled a 62, I thought I did pretty good.
I have even been taking my medicine better, I try not to complain to much because it doesn't work. It tastes really bad but I think I am getting use to it!
Thank you for all your prayer, I am starting to feel better!
Love Taylor
Tuesday, August 21, 2001 at 09:35 PM (CDT)
Hello,
The past two days have been much better for me, the pain in my legs have not been to bad and I did not even need to take any pain medicine. When we talked to the doctors they said it will come and go, and the pain could be anywhere in my body since it is in my bonemarrow. I still walk with a limp but it doesn't hurt to much.
I have not been able to go to school and I don't know if I will be able to go back, I want to go tomorrow but we will have to see how I am feeling.
We finally got the fenretinide today, and things are a little more involved than what we thought. We had to go to the hospital today and they drew some blood and checked my urine, they will have to keep a close eye on me. The side effects are a little scary they include- loss of vision,swelling of the brain, headaches, nausea,vomiting,vertigo,abnormal liver function,muscles aches, joint pains,arthritis, bleeding in the urine.
Preliminary data suggest that this drug is reasonabley well tolerated by most patients.
We still think that we need to try this. It is not a cure but then neither is chemo!!
I hope I don't get sick because I am looking forward to going back to school, Pray, Pray!!!
Love Taylor
p.s. I have new pictures
Sunday, August 19, 2001 at 07:47 PM (CDT)
Hi,
The past few days have been very hard for me, the pain has been really bad. The fenretinide did not come in and hopefully we will get that tomorrow. We had to get stronger medication because the tylenol with codeine was not working so now I am taking morphine.
Thursday I went to school but I had to be picked up at 12:30 and friday I didn't even go to school. Alot of my relatives came over and spent the whole weekend with us.
Saturday was the worst day because I could not even move my legs and I did not want anyone to touch me. Mom had to carry me to the bathroom and it hurt so much I think the neighbors could hear me scream.I did not feel like eating anything, and I think everyone was very upset but I just did not feel good.
Today mom and dad decided that I should not lay in bed all day and they made me sit up and at first it was hurting alot to move but, the more I moved around my legs were feeling a little better and I even walked again. (yesterday I thought I would never be able to walk again) Dad made me some juice and I helped him, I still did not feel like eating anything but at 6:00 tonight I finally ate four chicken nuggets and that gave me a little more energy, and it sure made mom and dad feel better.They told me I would have to go back in the hospital if I did not start eating. We went out for a walk at 8:00 (I was in the stroller) but by the time we got home I was ready for bed and I was starting to feel the pain again.
Tomorrow we are going in to talk with the doctors and we are going to schedule an appointment for radiation to my legs, that should help me with the pain.
I just pray that all my cancer goes away because the pain is really bad. I wish that nobody would ever get cancer and for all of us that do, we can only pray that a cure will be found!
Love you all, Taylor
Tuesday, August 14, 2001 at 07:51 PM (CDT)
Hello,
My first day of school was monday and I just love it, I did not know if I could make it the whole day but I did. The pain in my legs are starting to hurt more everyday. Today mom had to pick me up early from school because it hurt to much. I have been having a hard time eating because I just am not hungry and sometimes my stomach hurts. I really want to go to school tomorrow but I want mom to pick me up before lunch.
I really like my teacher her name is Miss Plummer, she is very nice to me.
We did get some good news today the drug that mom and dad have been trying to get for me call Fenretinide has been approved for me to take. We should get it thursday or friday, it is still an experimental drug but we do know it has cleared bonemarrow in the past. This is going to be better than chemo and hopefully it will start working right away and my pain will go away and I will be able to stay in school.
Love to you all, thank you for keeping me in your prayers!!!
Taylor
Friday, August 10, 2001 at 09:02 AM (CDT)
Hello,
A few things have happened this week, me and dad did not go to Louisiana last night because I was having a really bad pain in my right leg. It started happening sunday night I was feeling some pain but it only lasted for an hour. Then monday morning it only hurt a little bit then it was gone.
Tuesday we went to the zoo and my left leg hurt a little bit but I was not complaining about it. Wednesday we went to Adventure Island and my leg was fine. Thursday about noon my right leg (behind my knee) really started hurting and mom gave me tylenol and that did not work so she gave my tylenol with codeine and after a few hours the pain was gone. This time the pain lasted for Five hours and I was in tears half of the time and mom and dad had to keep rubbing my knee. My kitty Sweetheart must really love me because she stayed right by my side the entire time I was in pain.
At first we thought that it could be growing pains, but we soon realized that it must be from my cancer. Going to Louisiana is not working as well as we thought so now we will have to start chemo, we are still trying to get the fenretinide (we have a different doctor helping us now)but if we can not get it by early next week we will have to do chemo. I sure pray that if I have to do that that my body will be strong enough! We don't know if it is even going to work but we are running out of options.
I really want to start school on monday but things do not look to promising. If I start chemo I will not be able to go to school.
Thank you for your prayer!
Love Taylor
Friday, August 10, 2001 at 09:02 AM (CDT)
Hello,
A few things have happened this week, me and dad did not go to Louisiana last night because I was having a really bad pain in my right leg. It started happening sunday night I was feeling some pain but it only lasted for an hour. Then monday morning it only hurt a little bit then it was gone.
Tuesday we went to the zoo and my left leg hurt a little bit but I was not complaining about it. Wednesday we went to Adventure Island and my leg was fine. Thursday about noon my right leg (behind my knee) really started hurting and mom gave me tylenol and that did not work so she gave my tylenol with codeine and after a few hours the pain was gone. This time the pain lasted for Five hours and I was in tears half of the time and mom and dad had to keep rubbing my knee. My kitty Sweetheart must really love me because she stayed right by my side the entire time I was in pain.
At first we thought that it could be growing pains, but we soon realized that it must be from my cancer. Going to Louisiana is not working as well as we thought so now we will have to start chemo, we are still trying to get the fenretinide (we have a different doctor helping us now)but if we can not get it by early next week we will have to do chemo. I sure pray that if I have to do that that my body will be strong enough! We don't know if it is even going to work but we are running out of options.
I really want to start school on monday but things do not look to promising. If I start chemo I will not be able to go to school.
Thank you for your prayer!
Love Taylor
Sunday, August 05, 2001 at 10:23 AM (CDT)
Hello,
I am so excited to tell you that me and Landon both got two baby kittens (12 weeks old), we picked them up from the Humane Society on monday.
Mine is a grey tabby and Landon's is a brown tabby they are both females,Landon's kitty has long hair (they both have some persian in them) I named my kitty Sweetheart and Landons is Lovie, they are so cute!!
Thursday I was going to have a PET scan done but things changed when we found out that our insurance was not going to cover the cost since this hospital was out of network. So our cost would have been at least $4,500.00 so we will have to find another hospital that is in our plan.
Me and dad are going to Louisiana once again and will leave on thursday night and hopefully return friday night. We truly believe that she is helping me get rid of my cancer. I have been really good about taking my pills, powders and liquids. I don't eat any sugar (or very little) and no dairy product (I now eat soy) and I don't mind it at all!! We have been making our own juices and some of them are very good. We are still experimenting with all the fruits and vegetables.
I start kindergarten next monday Aug. 13th and will be going to Lake Myrtle Elementary
and I am all ready, I have all my school supplies and mom even bought me some new clothes. I think it is going to be alot of fun. Landon will be going to preschool in the mornings at Kids Stuff again.
We keep praying very hard that my cancer is going away, I told mom that I really really love God because he is the one that is helping take my cancer away.
Thanks for your prayers for me and Chris!!
Love Taylor
Friday, July 27, 2001 at 08:31 AM (CDT)
Hello,
My CT scan on Wednesday went very well and I am happy to say that I don't have any tumors in my head, (thank you GOD) We had a fun day because we also went to the St. Pete Pier and we just love to look at all the fish in the aquarium. I even got to buy a little stuffed animal (a kitty)with a five dollar bill that Lil (from Amherst, Minnesota) gave me.
Yesterday we headed back to the hospital and had to be there at 6:00 am. for pre-op, my surgery was scheduled for 8:30 but they also did a ultrasound of my chest and tummy so I did not go into surgery until 9:30. The surgery went great and now I have a brand new mediport and they put it right in the same spot where my other one was. I am just a little sore but not to bad.
Me and dad will leave for Louisiana in the morning our flight leaves at 6:30 am. and we are going to try and come back tomorrow night.
Next week I am going to have a PET scan done on thursday, I have not had one of these tests before. They are close to an MIBG scan as far as picking up any disease. We can not do any more bone marrow aspirates because I am so scarred so we really will have no way of testing my bone marrow for a while. We still don't know about chemo, the more we read about it the more we really don't want try it again. Then we still have the doctors telling us chemo will not cure my cancer it will only give me a little more time, in which I would be sick during that time,we really want to prove the doctors wrong.
Thanks for your prayer for me and Chris.
Love Taylor
ps. I will have new pictures by tonight.
Tuesday, July 24, 2001 at 08:35 PM (CDT)
Hello,
Well we made it back from Minnesota and we had the best time. We got to see alot of family and friends and we were on the go the entire time. We now need a vacation from our vacation.
Both Landon and I loved it out on the farm, we went into the woods and picked berries and flowers and my favorite part was playing with the baby kitties. We even had a big party in the woods with a fire and a hay ride. I stayed up until 2:00 in the morning and Landon decided to go home with grandpa and grandma at midnight.
We spent alot of time outside (the weather was great, a few days were almost as hot as florida) we went swimming,we even went to a cave that was 220 feet under ground. It was called Niagra Cave and it is only about 15 miles from where my mom and dad grew up. It was really cold down there, (stays 48 degrees year round) so we had to bring our sweaters.
We even went to the Mall of America and went to camp Snoopy (thats the amusement park thats inside the mall) We will have some pictures in a few days of our trip.
Now for my test results: I still have cancer cells in my bone marrow and they are not dead! We did not find this out until we were already in MN, so I think that we were meant to go and see all my friends and family. If I do have to start chemo again it may be a long time before I get to go back.
I am having a CT scan of my brain tomorrow, and mom and dad have not decided if they want the mediport put back in on thursday or if we should wait. Dad and I are flying back to Louisiana on friday and returning saturday. Then we are going to try and schedule a PET scan for monday then from the results of that we will or will not start chemo next week. We were told that a PET scan is even more sensitive than the MIBG scan, so if something is there this should pick it up.
We are just going to keep praying and never give up hope because I am ready to fight, this cancer is still going to be washed out of my body (right out my toes)
We should get the CT scan results tomorrow and if we do I will let you know.
Pray really, really hard at 10:30 a.m.,that is when my scan is.
Love Taylor
Thursday, July 12, 2001 at 08:37 PM (CDT)
Hello,
DO YOU BELIEVE IN MIRACLES????
God has heard our prayers and now I am blessed.
Wednesday my doctor called us and said "You are not going to believe this but the pathologist just called me and said that the cancer cells are dead!" This is something that just does not happen everyday, so today they wanted to check my bonemarrow again. I went to the hospital and they did three more biopsies, two in the back hip and one in the front. The VMA levels from my urine are not back yet and the results from today will hopefully be back late friday afternoon.
This was the best news, mom knew the cells were going to be dead and it would just take the doctors a while to figure out what was going on. The doctors don't know what to think of this because I don't think this has happened before. You either have living cancer cells or you have none.
We know that Dr. Linda in Louisiana is working with God, she told us that she killed the cancer and now we just have to detoxify my body, and get all the dead cancer cells out!!!! We prayed so hard that the cells were dead and now they are and we are sure that the results tomorrow be be the same.
Dad had called mom when we were in the car and all of a sudden mom started screaming and me and Landon did not know what was going on, then mom told me the cells were dead and you should have seen the smile on my face. We were even on our way to Chuck E Cheeses to meet some of our friends, so this really made our day. We thanked God all the way there and we just can't stop.
We are now going to Minnesota just as planned and we leave tomorrow (friday) and will be there until monday the 23rd. I am so excited I can't wait to see all my grandpa's and grandma's, cousins, aunts and uncles. Landon is excited too, we wants to pack his warm clothes because he thinks it is going to be snowing. I think their weather is going to be almost as hot as here in Fl.
We will update when we get the call from the doctor tomorrow night, or monday. Just so we can report the good news!!!
Thank you for your continued prayers for me and for Chris (who might get to go home on monday,he had his stem cell transplant)
Love to you all and God Bless!
Love Taylor
Monday, July 09, 2001 at 10:23 PM (CDT)
Hello,
I just wanted to give everyone a quick update, I went to the doctors today so they could check the VMA levels in my urine and to get another bone marrow aspirate and biopsy. The VMA and the biopsy will not be back until thurs. or friday. The doctor did look at my bone marrow thru a microscope and she did find neuroblastoma cells. We were praying that if cells were found that they would be dead, the doctor was not positive but she said it looked like they were trying to form a clover like shape (thats what NB cells do) so we want to wait for all the test to come back and maybe there is a way to compare my first bone marrow biopsy from three weeks ago to this one today(we are going to ask tomorrow).We want to know if there is any change or not. They did two aspirates and one was positive and one was negative. Which really does not matter much because the NB cells can be in several area's in my marrow.
We are not able to get into any clinical trials right now and it looks like chemo might be our only option. I told mom and dad that if I have to get chemo I want a wig and I want it to be the same hair color that I have now (blond). So I told mom and dad we could cut off some of my hair so they could match it to a wig.
Of course when we got home today we called the doctor in Louisiana and she said that it will take a while to get all the cancer out of my body and to keep taking the all herbal pills that she gave me and stick with my diet. Mom and dad have something inside their hearts that are telling them to believe this holistic doctor.
What do we do????
We even talked to our doctors here and they said I could start chemo whenever we are ready. Mom called about getting a mediport back in and the doctor who put it in before was not available until July 26th. (is that a sign from God, not to start yet) Another doctor could put one in on tuesday July 17th.
If we do have to go with the chemo we are going to go ahead and go for the strong ones which would be three rounds, and each one would be about 5 days. We would just have to see how my body reacts.
We pray so hard everyday and truly believe that God will help make my cancer go away!!
This next week we want to enjoy life and have as much fun as we can,(family and friends are included) Hug and Kisses to you all!!!
Love Taylor
Wednesday, July 04, 2001 at 07:28 AM (CDT)
Hi Everybody,
Me and dad left for Monroe, Lousiana sunday night and we thought we would be back Monday night but the doctor wanted to see me Tuesday morning as well so we did not get home until last night. This lady is a wonderful person and we truly believe that she is a miracle worker. We know first hand that she has helped two people that we know and while we were there her office was always full and we heard more wonderful stories of who she has helped and healed.
She did all kinds of things and would put her hands on me, it was almost like she could see right through my body.
First I have to tell you this, mom and dad both say special prayers for me and the night when mom and I returned from NY dad told me a special prayer that he started saying and it was "Jesus is going to come in my body and all the bad stuff is going to go right out my toes". Now the first thing that I did when I got to her office was she made me soak my feet in this water
and she said that this was to detoxify my body and that all the bad stuff was going to go out my feet. Dad knew right there that this was a good sign. (We have been trying to get signs from God to tell us what to do)
After spending 2 1/2 hours with her she told us that she killed my cancer and now we just have to detoxify my body. And she wanted to see me again tomorrow because she had a a few things unresolved to her and one of them was she was picking up metals in my body (?) Well of course when dad called mom and told her this she had many questions, (dad really couldn't answer) and we just wanted ask her if we should continue with any other treatment like the clinical trials that we have been trying to get into and she told us that it was up to us but she said "do not give her any more chemo" and that she was "100% sure that she killed the cancer and she can guarantee that". We all have really good feelings about this.
Mom stayed home and tryed to do more research and talked with doctors to see what they think about the clinical trails and chemo. Well we are still waiting to hear from St. Judes, the doctor we needed to talk with had monday and tuesday off. Mom called a doctor at the Mayo clinic in Rochester, Mn and also one in NY and the trail that we were hoping to get in is not open for new patients right now. My doctor in Tampa told mom again "that it is very unlikely that chemo is going to work so do you want to have her spend the last of her days in a hospital sick or would you rather give her a mild outpatient chemo and have her home with you." Now we could still try chemo and see how my body responds but we are looking for something that would not be so damaging to my body.
This doctor also gave us 16 bottles of different things that I have to take. So I have pills, powders and liquids and we mix them all together with juice and I can drink it,(it is a little nasty but I do it)
She said I need to cut out all sugar, milk and dairy products. So I will have to try soy and rice milk, cutting out all sugar is almost impossible but she told us to do the best we can. (which means no more sugar cookies from publix)
She wants us to come back on a monthly basis so this time we can plan in advance and get our airfare a little cheaper. And since she is considered a holistic doctor, insurance does not cover this. We have had several friends that are helping us out with this so we want to thank all of them!!
I am feeling wonderful and glad to be home once agian.
heres of few words from mom:
I have a very sad announcement, Jillian Johnson died Saturday night at 6:00pm. she was 3 1/2 years old and was a beautiful sweet child, her memorial services was held last night, tuesday July 3rd at 7:00 pm. It was a beautiful service and they played some of Jilly's favorite songs. Jilly will be sorely missed by all and we will fovever cherish her in our hearts.
We have not told Taylor of Jillians passing and will do that when the time is right.
Thank you for all the prayers,
We love you, Taylor,Landon, mom and dad
Thursday, June 28, 2001 at 07:33 PM (CDT)
Hello,
Me and mom are now back home, we got in Wed. night and when we got off the plane dad and Landon had roses for us. I just loved them I never had my own roses before.
I was so happy to be home again and I think dad and Landon really missed me,they both kepted kissing me (and mom). We even stopped at my favorite restaurant (Sweet Tomatoes) on the way home. When we got home I had a present for Landon, I won it playing bingo in the hospital and I thought that he would like it so I picked something out for him, (instead of something for myself) it was a set of five cars. We did not get to do much in NY because I was in the hospital most of the time, but I still got to play in the play room and make some crafts so that made me happy. The food in the hospital wasn't too bad, I loved their cheeseburgers thats what I ate for lunch and dinner everyday.
Auntie Lisa spent the night with me Saturday and sunday night so mom could go back to the Ronald McDonald house and get some rest,(she does not sleep very well in hospitals)and sunday my Aunt Sharon and grandpa Decio came to see me, they live in Conn. (It's my grandma Evelyns sister)
They removed my mediport on Monday and I was told that they were going to squeeze my surgery in(I was an add on) and I could not have anything to eat or drink. Mom was getting a little worried because once noon came around and they still did not know when I was going to get in and I was starting to get hungry. Lisa did a very good job keeping me busy in the playroom so I wasn't thinking of food. Finally at 3:00 p.m. they brought me down to surgery. At 4:00 Lisa had to leave for the airport. Everything went very well and I was eating a cheeseburger at 5:30.
I got released from the hospital that night and a home health nurse met us at the Ronald McDonald house and started me going on an anitbiotic (vancomyacin)the same one that they were giving me in the hospital. I have to get this every 12 hours, mom knows how to do that. I have an IV in my arm which is where my medicine goes in, now that my mediport is gone. I don't like it at all because I can not bend my arm and I have to be carefull. They put my IV in my right arm because my left arm was all used up, I had three pokes in that arm, two IV's and one Midline,(which the home health nurse put in on tuesday and it was not working tuesday night so we had to walk back to the hospital at 9:00 pm. because my arm got really big during my antibiotic and it hurt just to touch it, so needless to say that had to take that one out)
and I did not want to get another poke that night so wed. morning they put in my new IV.
then we had to talk more with the doctors and then catch a taxi to the airport because our flight left at 12:30.
Mom and dad told me this morning that my cancer was back and that I might have to get chemo again. I was really mad because my hair is finally looking good again and I don't want to lose it.
We still don't know what we are going to do because we have a few options and the doctors really don't know if any of them are going to work.
We can A. get three rounds of very strong chemo (if my body can handle that) but the risks are high, it could damage my heart and liver, I would most likely be in the hospital for a very long time and would be fighting off infections, needing alot of antibiotics and transfusions. Then if my bonemorrow is clean they would try to get more stem cells because the bag that I have in storage is not enough to do a transplant.If I have enough I would have to go through another transplant. Then get more antibodies in NY (if by that time I lost my HAMA) and get more accutane, and take an oral chemo.
B. take a milder approach and take a standard chemo dose for five days, then recover and take more chemo for five days which I could do as an outpatient.
C. Just start taking an oral chemo and there would be three diffent ones I could take (two of them I would not lose my hair)
Now the doctors don't know if anything will help me,so how much can my body handle??? Mom and dad are so confused we are hoping that God will help us decide.
The doctors want to get started on something as soon as possible so we don't have much time to decide.
We are looking into St. Judes in Tennesse and they are going to get back with us once the doctors here in Tampa send them a summary of my treatment and maybe they can help us. We might not know anything until monday or tuesday. In the meantime we are going to go to Monroe, Louisiana to see a holistic medicine doctor who has helped someone we know in Minnesota. She may not be able to get rid of my cancer but she could help so it doesn't grow, or spread anymore.
We just have to try whatever we can and keep praying, because you know what-- I AM NOT READY TO LEAVE YET, and GOD is going to help us.
We are going to leave for Louisiana after church on sunday, I am going to get anointed. Then If St. Judes can't help us I will start chemo (which ever one we decide) on thursday,after the 4th of July.If St. Judes can help us then we will be going to Tennessee.
Pray that God will help us get through this and that I can handle whatever is given to me.
Thank you for all your prayers and continued support for me, Jilly and Chris.
I Love You all, Taylor
Saturday, June 23, 2001 at 12:56 PM (CDT)
Hello to All,
Me and mom are still in New York because on Tuesday I had a fever and now I have an infection in my mediport that won't go away so they are going to take it out. They will take it out on monday or tuesday so I don't know when we will get to go home.
We got the results from most of the test back on Thursday, we are still waiting for the MIBG test results. I can only ask you to do one thing and that is pray, pray, pray as hard as you can because I have my cancer back in my bone marrow. The doctors are trying to come up with a plan for me and we are not sure what that will be. They want to try and give me two very stong chemos and then see how my body reacts to that and if that will clear my bone marrow then they will want to try another stem cell transplant (I still have one bag of stem cells left). If the MIBG shows anything then I don't know what we will do.
Here's a few words from my mom:
We are still very shocked and it is hard for me to be in NY by myself so Jeff's sister Lisa flew up on friday and will stay til monday. We have not told Taylor that her cancer has come back, I will wait until we get home because it is going to be harder than the first time. She is now happy with the amount of hair she has and it is going to kill me to tell her she is going to lose it again.
Taylor is feeling great and you would never guess that anything bad is going on in her little body. This is going to be harder for all of us this time because we know just what to expect. the doctors did say it will be harder on Taylor as well because her body may not be able to handle all of this. We are praying that she is a strong little girl and she can do anything.
She needs to be strong and I have been trying to be as strong as I possible can which is very difficult to do.
I will try and write more often again to keep you all informed, and when I know more of what the plan for her is.
We love you all, please pray for her and are other little cancer friends, Jillian and Chris.
Love Angie
Friday, June 15, 2001 at 08:24 PM (CDT)
Hi Everyone,
Its been a while since I have posted so I will try to get you caught up with what has been going on. First I am happy to say that I graduated from preschool and will be going to kindergarten this fall.
We have been staying very busy, we spend alot of time at the pool,beach,on the boat and Adventure Island (a water park here in Fl). We are trying to make up for last year,because if you remember I could not go in any public pools and we had to be careful being around people,(this was after my transplants) Then we also spent a few weeks in New York.
My cousin Amy, Tori and Dakota came to visit us from minnesota and we had so much fun.
Mom had her tarpon fishing tournament and they won a trophy for the most caught and released. They caught four total and two of them were moms. There were 47 boats in the tournament and three women to each boat. All the fish that they caught weighed around 115 to 150 pounds, and the winning fish weighed 151 lbs which took the prize of over $15,000. They did not win but were happy to get a trophy and they had a lot of fun.
Me and Landon just finished swim lessons, I can swim like a pro and Landon is doing pretty good himself.
It has already been three months and it is time for me and mom to head back to New York for testing. We leave on sunday morning (fathers day) at 6:30 in the morning and we will get back thursday night.
We are going up a few weeks early because the last two times they tested my urine (for VMA/HMA levels) which are cancer markers they were slightly elevated. So we want to stay on top of things and we can only pray that I will stay cancer free!!
We are very sad to report that our friends Chris Becker and Jillian Johnson are in despirate need for some very special prayers. Christopher now has it back in his bonemarrow, and four weeks ago Jillian had a relapse and it came back on her brain. They were both told that they will not live past a year. Prayers will make miracles happen!!!
I will update as soon as we get my test results back.
Check out my new pictures!
Thank you for keeping me,Jillian and Chris in your prayer!!!
I Love You, Taylor
Tuesday, April 24, 2001 at 06:57 PM (CDT)
Hello,
Our trip to New York went very well, my antibody treatment started on Monday March 26th and that day when we woke up it was snowing. The flakes were very big and I was trying to catch them with my tongue.
We had to be at the hospital at 8:00 a.m. and all the nurses were happy to see me again. We seen a few families that we knew from our previous trips to NY and we met several new families (all with neuroblastoma)
The first three days of treatment were very hard, I was in alot of pain, the first day it was in my stomach and the second day it was in my stomach and my throat the third day I had pain all over but mostly in my mouth and throat. Day four I broke out in hives on my face so my face was very swollen. Mom would help me by getting ice to put on the area that hurt and of course there was the pain medicine that helped a little.
The weather was very cold and I slept off the pain medication for the first three days so I did not get to play much in the afternoon because by the time I woke up it was time to go to bed. I did get to play at the hospital every morning until they started the antibodies and I did several crafts, every day they had a new craft to make.
Then on thursday my auntie Tracy flew in from Minnesota she arrived at the Ronald McDonald house at about 5:00 p.m. I was so happy to see her, we showed her around and then she came to the hospital with us on friday and she got to meet all my nurses and friends. Friday was a great day for me because I was not in much pain at all, except for the bone marrow aspirate that I had friday morning so I was a little sore the rest of the day,but I got to play with Tracy and I showed her the play room.
Saturday we went to the Empire state building , we were up so high that I could see the whole city, I could see for miles. Then we went walking, went into Macy's and down Fith avenue,then we went to Rockefeller Plaza, then to FOA Schwartz then walked to central park. I just love the park because they have huge rocks that I love to climb on.
Sunday we went back to Rockefeller and took a tour of the NBC studios, we got to see Rosie O'Donald's, Conan OBrien and the Saturday Night Live studio. Then we walked to Times Square, boy is that a busy place it was really cold that day and we had a hard time trying to get a taxi!!!
Monday it was back to the hospital and Auntie Tracy was leaving to go home so I was a little sad. I did not have any pain today, but my eyes were so swollen that I could harldly see and mom did not know if I had my eyes open or closed. The doctors were not sure what was causing my eyes to swell up and Tuesday when I woke up my eyes were still swollen and that scared mom a little because if I do get swollen anywhere it is always gone by the next day. The swelling finally went down by tuesday night but not all the way.I did not have any pain on tuesday nor did I have to get any pain medication so they tested my blood to see if I was getting a HAMA ( if you don't get pain that is a good sign that you are getting a HAMA.)
Wednesday when we got to the hospital they told us that I had already had a HAMA so I would not have to get any more treatment(for now) so we had some free time to play at the hospital and at the Ronald McDonald house. thursday I had to get an injection for my MIBG scan on friday and that was it.
Thursday was a beautiful day so guess what we did? We walked to Central Park and I played for a long time and climbed alot of rocks.
Friday I had my scan in the morning and then we played some more and made more crafts. That night there was a man that played music at the RMH he calls himself "That Guitar Man From Central Park"
and he was great he said he has been playing at central park for ten years now.
Saturday we got up and cleaned our room and check out, took a taxi to the bus station and took a bus to Conneticut, our cousin Marcos picked us up and we went to their house for the afternoon and then he brought us to the airport. We flew out of Hartford. We had a great flight and made it back to Tampa at 11:00 pm. Dad and Landon were so happy to see us that all of us did not get to bed until 1:00 a.m.
I then had spring break so I had time to enjoy being home again.
All of my test came back Negative so I am still---- NO EVIDENCE OF DISEASE!!!!!!
I feel great and I am loving life!!!
We will plan our next trip to New York in three months.
Thank you for all your prayers!!
God Bless, Love Taylor
I have pictures from NY
Tuesday, March 20, 2001 at 08:32 PM (CST)
Hello,
I am happy to report that I am feeling much better, it took me about 8 days to get over the flu. I feel great and I have been eating alot.
Me and mom will be leaving for New York on sunday (March 25) and will be there for two weeks. I will be getting another round of antibodies and then we should be home on April 6th or 7th, we are still trying to get airline tickets!!! Then on Wed. the 28th I will have the MIBG Scan--that is the one that will detect any neuroblastoma--Florida does not have that test! They will also do a bone marrow aspirate.
We thought that we would be seeing Chris Becker in New York but he is now back in Tampa for the first time in 6 months, his cancer came back in his liver and now he will be getting more chemo, then his stem cell transplant and more radiation. We have been praying very hard for him and I hope you will do the same. Your prayers are very powerful, I know because I am proof of that.
We will try and keep you updated every few days when we are in NY, I'm sure I will have lots of things to tell you!!
Thanks for all your prayers!!!!
Love to you all, Taylor
Monday, March 05, 2001 at 02:16 PM (CST)
Hello,
Well alot has happened in the last month,first I want to tell you that I had two of my scans done on Feb. 8th (the bone and the CT scan) we had them done at All Children's Hospital this time because we could not get to NY. We did not get all of the results of the scans for almost 3 weeks, so we we a little nervous, they told us there was an abnormality on the bone scan a mildly mottled appearance of the calvarium, and the doctors needed my previous scans for comparison and they were still in NY. We then had to have NY send all of the scans and they only sent half of them so we had to call again and finally we received all of the scans and the doctors looked at everything and they said the spot on my head is just some scar tissue. That was a very long few weeks for mom and dad!!!!
My blood was tested on Feb 12 and sent to NY and they called and told us that I am now border line HAMA negative so that means we will be going to NY very soon, I had my blood tested again today so we will find out for sure on Wed. night when they will want us up there. Mom is hoping that it will warm up in NY real soon because we will be staying for two weeks. I will also get a few more tests done just to be safe, like the MIBG Scan and another bone marrow aspirate.
All my friends at my preschool (KIDS STUFF) had a bike-a-thon for me on Valentines Day and that was a big success, we can not thank them enough for all the support.
Landon and I both came down with a cold and his was the start of bronchitis he was coughing all the time and they put him on an antibiotic, I just had a little bit of a runny nose but then on Feb 22 I was at school and I started getting a fever so dad came and got me and brought me to the doctor and the pediatrician thought it could be pneumonia so we had to make a trip over to the hospital and since I did have a fever we had to stay, they drew blood and I had some x-rays and they said that I had sinusitis again. I had to stay in the hospital until saturday.
Mom and Dad pulled us out of preschool for a few weeks until all of this cold and flu season is over, just to be safe. I am bored out of my mind I want to go back to school, I love to see all my friends every day.
Mom hurt her back again the first week in Feb and half the time she walkes around like a old women, she did go to a chiropractor and he helped alot. He told her she could be a poster girl for a scholiosis add because her spin was so crooked. But every now and then something goes wrong and she is crippled again.
Dad picked up our cold and he finally went to the doctor on Feb 26th and they told him he had bronchitus so dad is on an anitbiotic too.
Then all was going well again until this past Saturday Landon got the flu and he started throwing up saturday evening with diarrhea so he did this for 36 hours and now he is not throwing up any more but his stomach still hurts him. We have been really washing our hands so the rest of us don't get sick.
I will let you know when we will be in NY. We will get to see our friend Chris Becker he is still there waiting to get his transplant and now they are telling him there is a spot on his liver so he had a PET scan on friday and we are waiting to find out if it is cancer or not, we have been praying very hard for him!!!!
I have some new pictures to show you!!!
I finally got to see my new 2nd cousin who lives in Minnesota her name is Victoria (Tori) and she flew down with her mom and dad (Amy and Chad)she is just precious!!
I finally learned how to ride my bike without training wheels (mom and dad were always afraid before to take them off)
Thanks and God Bless!!!
Love Taylor
Tuesday, January 30, 2001 at 04:40 PM (CST)
Hello,
The past few weeks have been cold in Florida and now it is finally starting to warm up. Everything has been going good until last friday, I had the flu and I have been throwing up for 3 1/2 days, last night I ate for the first time in almost 4 days, so today I am still very week. I never had a fever or anything else I just kept throwing up, and I spent all my time laying on the living room floor, sleeping and watching tv.
mom and dad are working on something that maybe some of you would be interested in. It is to help pay some of my medical bills and you don't have to give us any money, as a matter of fact you could save money!!! If you want more info please look at this web site www.excelir.com/taylorjohnson
You can help simply by switching you long distance phone service (they have plans as cheap as .03 cents a minute, as well as cell phones, internet and beepers.) You can always call or email us for more info!!!
I will have all my testing done again next week (Feb. 8th)and we are having it done at ALL Children's Hospital, the only thing they don't have is the MIBG scan and we will do that the next time we go to NY for my antibody treatment. I will be tested for that on Feb. 12th. So we are very sure that all my test will come back negative and I can continue to have a "normal life"
I pray everynight that my cancer never comes back and I think God can hear me, because he has answered all my prayers!!
I know that your prayers help to so thank you for praying for me!!
Love Always, Taylor
p.s. please say a extra prayer for a lady that has always prayed for me and now she is battling cancer herself her name is Doris Johnson
Tuesday, January 09, 2001 at 03:18 PM (CST)
Hi Everyone, and Happy New Year!
I had a really great Christmas after I got out of the hospital. I had to go in for a fever on the Friday before Christmas, my temp was up to 103.5 at home. When we got to the hospital the fever was gone but they kept me there becuase that is a very high temp when you have a medi-port. They drew blood for cultures and started me on 2 anti-biotics. On Saturday my doctor ordered sinus x-rays and that was how we found out I had sinusitus so that meant I had to take an oral anti-biotic also(augmentin, for 3 weeks). On Sunday, Christmas Eve., my blood cultures were still clean so we thought for sure Dr. Barbosa (the head doctor for oncology) would discharge us but, when he came in for morning rounds he said he would try to get us out on the 25th, CHRISTMAS DAY!! ya right!! Dad didn't think that was such a great plan so he talked to the Dr. again and then took me home Sunday afternoon after he signed an AMA(against medical advice) paper. I think he was upset with the doctor. After the year I've had we were definately going to be all together on Christmas morning!
Grandpa had been helping to take care of Landon so he was there when we got home. I was so excited about being home and having all of those presents under the tree. It wasn't long before we were ripping our presents open. THANK YOU everyone for sending all of those presents to Landon and me.Then on Christmas morning we got to open all of our presents from Santa and the wonderful families at Our Lady of the Rosary Church.
It has been very very cold for Fla. so we spent a lot of time inside playing with our new toys the week after X-mas. That was probably the messiest our house has been, we had to have our toys out where we could see them and play with them. Mom had to do a little cleaning in my room, she had to pack some things away to make room for the new stuff. I really like to collect all sorts of things and I think mom got rid of a few things I collected.
On New Years Eve we all went to Alan, Beth, Morgan, and Boo's house for a Bucs party, the party was great but the game wasn't good at all. Now we will have to cheer for the Vikings. Then after that party we went to my friend Nicholas' house for another small party. I stayed up until about 11:30 and Landon stayed up until about 1:00 in the morning, he didn't want to miss out on anything. The whole family was pretty tired Monday morning so we all just relaxed for the day.
This year is starting out a lot better than last year did and we are all praying that this year brings me more good health and that my body continues to get stronger and stronger and never lets that mean cancer have a chance again!!! I will still have to go to N.Y. for all of the scans and tests and possibly for more treatments if I lose my HAMA. I'm scheduled to go up there at the end of January for the scans. On Jan. 8th I had to send blood up to N.Y. for the hama test so we will find out on the 10th if I still have it. I hope I still do because I think it is very cold up there.
Please keep praying for me becuase I know that is what got me through the last 15 months. I still know that with everyones prayers that cancer doesn't have a chance. I love you all and God Bless You All.
Taylor
Wednesday, December 20, 2000 at 02:50 PM (CST)
Hello,
Happy Holidays everybody. Christmas is almost here and I'm getting very, very excited. Dad, Landon, and me got our Christmas tree last Wed. I was glad we waited until I got out of the hospital. I got to pick out the tree. Landon and me helped mom decorate the tree but I think mom adjusted the docorations after we went to bed. Now there are lots of presents under it and I like to check and see how many are mine.
I got out of the hospital on Monday (12/11).I had 7 days of anti-biotics (vancomycin) in the hospital and then I had another 7 days at home. For the anti-biotics at home I was hooked up to a small portable pump that fit into a little back pack. That was so much better to get my med. at home than in the hospital, especially when the toy room was closed most of the time I was there. Monday (12-18) was the last day for the pump so I was happy to be totally free again.
I made it back to school in time to practice for our Christmas play.(I could take my med. to school in my backpack). We had our plays on 12/18. Each class at Kids Stuff had themes from different countries. Landon's class did France and my class did Russia. Landon and I had a lot of fun and along with our classes we all did a great job. Mom is going to get the video so we can see ourselves.
We decided to let mom and dad go out 2 nights last weekend. They had Christmas party's to go to so on Friday night we stayed at Auntie Cathy's house(we just love to go to her house). Then on Saturday night grandpa and Matt spent the night with us. Sunday afternoon we went to the All Childrens Hosp. party. All the party's and plays and getting ready for Christmas have made it a very busy week. I'm full of energy now so I can handle it.
Merry Christmas, I Love You All,
Taylor
P.S. from dad
Angie and I would like to wish everyone a Very Merry Christmas!!! We also want to thank everyone for all of the prayer's, support, and gifts you have given to our family. We have truly been blessed with a miracle this year and we have so much to be thankful for, the greatest of which is that Taylor is currently cancer FREE!!! We want you all to know how truly grateful we are to have you in our lives and praying for us!
Merry Christmas and God Bless
Jeff and Angie
Saturday, December 09, 2000 at 09:27 PM (CST)
Hello,
I am still in the hospital and I am hoping to get out on Monday. I had an infection in my mediport so they had me on a strong antibiotic called vancomyasin (sp?) and have to be on this for 14 days. This means that a home health nurse will have to come to our house and show mom and dad how to hook me up to a IV pole (it will have to run over a period of time) This will be a piece of cake for them, they have had a lot of practice.
They also discovered that I have a mild case of walking pneumonia and they started treating me with another antibiotic. I did have a high fever on tuesday night but I have not had on since. I have been feeling good and have been making a few crafts and doing alot of coloring.
They drew more blood from me on friday and they are running more cultures, so if nothing grows then I am clear to go home on Monday, if I still have an infection they will want to do surgery on monday to remove my mediport.
I can't wait to get home because we still don't have a Christmas tree yet and I want to pick it out. I miss all my friends and I just want to sleep in my own bed!!!!!!!!
Landon had an ex-ray and an ultasound done to his stomach and everything checked out ok, so our next step with him is to have him tested for allergies. He is now taking zyrtec at night and that is an allergy medicine and that seems to be helping.
I still have my HAMA so now I will not have to be tested again until the first part of January, which is good because I have had enough of hospitals for a while!!!
Thanks for praying for all of us!
Love Always, Taylor
Monday, December 04, 2000 at 09:48 PM (CST)
Hello,
I have to say we had a great time in Minnesota, we seen so many of our friends and family that we have not seen in a long time (some of them I was meeting for the first time).
We got to play out in the snow, I even made a snow angel, I went sledding and I threw a few snow balls at my dad!
My ear infection came back but we got that taken care of really fast, so I was only down for half a day and then I was feeling better again.
We got home on sunday night (11-27) and we were all tired, we were pretty busy the entire trip. Then dad had to go back out of town for work, but he was home thursday night and My uncle Wendell even came for a visit. He came thursday night and then he had to leave again sunday morning.
Now for the latest news I am in the hospital again, Sunday after church I started getting a fever and mom called the doctors and after my fever would not go away they said I could have some children's Advil (because thats what we had) well my fever went away but I had an allergic reaction to it and my face started to swell, so the doctors told us to come in ASAP so me and dad rushed out the door. I think dad made it to the hospital in record time!!!!!!I did have a little scare on the way there because I felt like I could not breath, but that passed and I did just fine, after a few hour in the ER they said I could go home. They did run blood cultures when I was there.
We got home a little after midnight and I slept in until 11:00 this morning. Then a few hours later my fever started to come back and just when mom was going to call the doctors the hospital called and said the blood cultures started to grow a bacteria so we had to quickly pack our bags and go back to the hosptial so they could start me on an antibiotic. They think the infection is coming from my mediport and that is not such a good thing, if it is it may have to be removed. That also means I will have to be in the hospital for 7 to 10 days, but if it is not in my mediport then I should only have to stay for 3 days.
We even had to take Landon to the doctors today because he has been complaining about his stomach hurting for two months now and at first we thought it was just Landon complaining (because he like to do that) and now we realize that there has to be something wrong because even Landon can not compalin that often if there really was nothing there. So tomorrow he will have his stamach x-rayed and they will check his urine and stool. If they can not find anything there we are not stopping until we know what the problem is!!!!!!!!!
So Landon could use a few prayers too!!!!
I am in All Children Hospital room 262A if you want to call the number is 1-800-456-4543.
p.s. check out my Minnesota pictures!!!!
Thank you for the prayers and support!!!
Love Taylor
Thursday, November 16, 2000 at 09:50 PM (CST)
Hello Everyone!!
We are leaving for Minnesota tomorrow and we were told that they have about 3 inches of snow!!! I am so excited to see all my cousins, the first thing I want to do is make a snow angel, then throw a snow ball and then I want to make a snowman.
Mom made sure that we have all the doctors numbers just in case, and all my medications packed. I started back on the accutane for 14 days again so I hope my skin does not get to dry, (this is the third round now.)
I have to get to bed now so I will tell you all about our trip when we get back!
p.s. We would love to see everyone in MN so please look us up!!!
Love Taylor
Monday, November 06, 2000 at 08:41 PM (CST)
Hello,
Well our trip to NY went very well, the flight was a little long so I slept half of the time, we had a lay over in St Louis. When we got to NY sunday night it was only 35 degrees, that was a little cold for us, then monday it was 44 degrees with the wind blowing 25 miles in hour. I had to be at the hospital around 10 a.m. so they could access my mediport and then I had to get an injection for my bone scan at 11:30 and then my scan was at 2:00. I had fun playing in the toy room inbetween appointments, and I even helped sort out halloween candy for all the nurses and doctors to give out on tuesday. After my bone scan we went back to the Ronald McDonald House and got ready for the one of the Halloween parties. I painted four little pumpkins, watched a magic show, made a necklace with fruit loops,and had my fingernails painted black with orange glitter. I did alot of running around, having fun.
Tuesday morning mom had to wake me up at 6:30 and I had to drink 12 oz. of contrast (we mixed it with sprite) and I had to drink it all by 7:00a.m. and I just wanted to sleep, by the time I finished it was about 7:45. My bone marrow aspirate was scheduled for 9:00a.m. but they had to delay that by 45 minutes. I was sedated for that and when I woke up I was not to happy, I could only cry.
Then we had to rush down to the CT department for my CAT scan, after all of this was over I was still a little drowsy but we went back to the toy room at the hospital because they were having a halloween party. At first I did not want to wear my costume again because I was sore but I put it on anyway. I had alot of fun they had many different activities going on, but the best part was that my Auntie Sharon (great aunt) came to spend the day with us from Conn. After I went trick or treating at the hospital we went back to the Ronald McDonal House and there was a police man that was going to take some kids to Madison Ave. to go trick or treating so I thought that would be fun, we went and I had a great time but my hips were really getting sore from my bone marrow aspirate so mom had to carry me.
Then Auntie Sharon took us out for dinner and then we spent a few minutes in the play room. Mom thought is was time for bed but I wanted to go down stairs and check out another halloween party that was going on so we did and I had more fun.
Wed. morning I had my MIBG scan at 10:00a.m. and I was tired after my busy day
so I fell asleep during my scan which took about 45 minutes. After that I went back over to the play room and mom talked to the doctors,she had a few questions. They said the test results would be back by friday or the following monday.My next HAMA testing will be Nov. 27th.
The dotors told mom that I could stop taking one of the two pills that I have to take every night, so I was happy about that.
We did not get home until 1:45 a.m. dad and Landon picked us up at the airport and Landon was sure happy to see us, especially when he seen that I had a big basket of candy that I brought home.
We found out some of the test results on friday but we had to wait until today to get all of the results and the doctor finally called around 6:00p.m. and told us that ALL OF THE TEST CAME BACK CLEAN!!!!!!!!
NO CANCER!!!!!!HURRAY! Thank you to everyone who has continued to pray for me because God really does listen to every prayer!!!!!!!!!!!!!
I had a great weekend, we went to the Flap Jack Festival on saturday and then Cathy, Steve, Bryan and Matt came over to spend the night and go fishing on sunday so after church and sunday school we went out on the boat. We did have tickets to a hockey game but I was really tired so dad went with some of his friends. Then later that night I woke up with an ear ache and had trouble sleeping and by morning I had a little fever so I had to go to the doctor and I have an ear infection. So they had to draw blood and run cultures just to make sure that is the only thing that is wrong. I did get to go home again, mom and dad just have to keep checking my temperature so that the fever does not get over 101.
If nothing grows with in 24 hours then I am ok but if something grows I will have to go and stay in the hospital for a few days.
As long as I have a mediport in we still have to be very carefull.
Oh and by the way my grandpa Mal and stepgrandma Judy are buying half of our plane tickets so we are going to Minnesota for Thanksgiving we will be there from the 17th to the 26th. I am hoping to see alot of people that continue to help and pray for me so please look us up when we are there.
Thank you again for praying for me!!!!!!!
Mom put two new pictures to see!
Love Taylor
Sunday, October 29, 2000 at 06:07 AM (CST)
Happy Halloween,
I had my blood tested again and I still have a HAMA, so mom and me will only be going to NY for the testing we leave today and will get back late wed. night at 12:50 a.m.
Good news to report is that our friend Chris Becker (who is also receiving antibodies in NY) is now NED (no evidence of disease) that is a first for him and we are so happy.
I have had a busy week wed.for pre-school we went on a field trip to a pumpkin patch and I got to pick out another pumpkin. Friday night we had trunk or treating at our church, first they had a costume parade and contest (I am happy to say that my costume took first place in my age group 4,5 and 6 year olds) then we all went trick or treating from car to car (or trunk to trunk) we had a super time. Last night I went to a Halloween-birthday party at my friend Brittneys house and now today before we leave for NY I am going to another Halloween party.
I only have two more days left on the accutane then I will have a 14 day break, then I will be on it again for 14 days (for six months) My skin was getting very very dry and of course my lips are very dry,they even peeled and cracked, we now have some lotion for my skin and lips and it helps but I still look flakey (ha). The accutane does wear me out but I try not let it bother me I still like to get as much time out of the day as I can.
We are flying to NY through a program called Operation Lift off and it is available by people donating there miles to TWA and we just learned that they are very low in miles and we may not be able to use them any more. If you can get the word out that if anyone has miles that they will not use, have them donate them to TWA. You can even donate them in my name.
We also would like to tell you about some exciting news (we think so) is that for the first time ever there will be a Childhood Cancer Awareness Holiday Tree on Capital Hill. Congresswoman Deborah Pryce (she lost her daughter to neuroblastoma) and the candlelighters made all this happen. The tree will be decorated with white lights and the gold ribbon symbol of childhood cancer, with each ribbon purchesed by family members or friends($5.00) honoring a child who has or has had cancer. This gold riboon tree will be lit at 5:00PM on Fridy Dec. 15th Location is to be in one of two areas of the Rayburn building on Capital Hill.
Names of the children will be compiled by state and sent through Deborah Pryce's office to members of the house and senate.
You can purchase the Gold Ribbon in honor of
me or another child you may know by sending a check for $5.00 made out to the Candlelighters, Holidays with Hope:
Candlelighter Childhood Cancer Foundation
3910 Warner Street
Kensington, MD 20895
Phone 800-366-2223
Thanks for all the support and I am sure that we will have only good news to report when we get home!!!!!
Love Taylor
Wednesday, October 18, 2000 at 09:45 PM (CDT)
Hello Everyone!
Well we just found out I need to go back to New York for all of the testing, they like to do this every three months at least for the first year and a half, then it will be every six months. I will still get my blood tested on monday the 23rd and then if I lost my HAMA I will already be in New York so I would then start the antibodies on the 30th. This time it will just be me and mom going and we will leave on sunday Oct 29th and my tests are scheduled for mon, tues, and wed. and then we should be home on thursday. Unless, of course I need antibodies and then we will be in NY for two and a half weeks.
I did not like the fact that I will not be able to go trick or treating this year but mom said that the Ronald McDonald House will probably have a big party, so I guess thats OK with me. I told dad he had to carry my halloween bag and get some candy for me! (Even though I don't eat much candy, I like to have it)
We will find out on the 25th (thats my dads birthday) if I lost my HAMA or not so I will let you know.
We went fishing on saturday and my dad caught tons of bait (with the cast net) Landon and I had to pick up the little fish and get them in the bait well before they died and dad was above us trying to shake all of the fish out of the net and the next thing we knew Landon and myself were covered with little fish scales. It was a blast and we had a great time, fish scales and all. Landon even caught the first fish and he told mom and dad he had a fish and they thought he was just saying that, but then they seen his pole bend so dad rushed over to help him reel it in, he caught a trout. Then we had to do what I love and that was going to a beach and collecting shells.
Thanks for keeping me in your prayers!!
Love, Taylor
Wednesday, October 11, 2000 at 10:50 PM (CDT)
Hello,
My how time flies when your having fun!!
I did not get my blood tested on monday because the hospital called us from New York
last week and told us I did not need to get my blood tested until Oct. 23. We don't know if this is a result from the last test or simply because they are full of antibody patients and don't have any extra beds. They only give antibodies to 8 or 9 kids a day and no more. So I am sure the next time we have to go to New York is is going to be very, very cold. Mom has been shopping around trying to find me some warm clothes, I don't even own a winter jacket that would be warm enough for New York!
We have our house all decorated for Halloween, I think I am going to be either Snow White or a show girl, (I have dress up clothes for both) I am going to a few parties so I will be able to wear both! Landon is going to be a bat or a devil, if he decides to wear a costume this year.
Last year Landon would have been happy just going in his underpants, we did make him put on some clothes but he was not happy!!!
This week we finally got some cooler weather and I just love it, me and Landon play outside every chance we get. Today was about 80 degrees and monday I think the high was only in the low 70's. Monday night when we were outside mom kept telling us to put on a jacket so we don't get sick, so I put on two sweatshirts and a jacket and when I came back out mom said " Taylor I don't think it is that cold out," and I told her" I do not want to get my cancer back" I guess I thought that if I got sick my cancer would come back, and I don't want that to happen!!!!!
Thats all for now, I have more new pictures!
Love Always, Taylor
Monday, October 02, 2000 at 09:11 AM (CDT)
Hello,
We got back from our cruise on thursday and let me tell you we had the best time!!!!!!!!
The ship we were on was called the Disney Wonder and it was a beautiful boat, and of couse we got to see, Mickey, Minnie, Goofy, Pluto, Cinderella, Snow White, Alice and a few more. They had live shows, a movie theater (we were to busy to watch a movie) and they even had a kids club were mom and dad could leave us for a while (they were given a beeper so if we wanted to be picked up they would just beep mom and dad) and of course all the food you could eat!!!!
Then when we went to Nassau we went to the new hotel Atlantis and stayed there at the beach and they also have a huge under water viewing tanks were we seen tons of fish. The place was amazing, I will put new pictures every few days to show you some of the thing we did.
Castaway Cay was great too, that is disneys own private little island and we have fun there to, I even went snorkeling and found some shells. The weather was perfect the whole time and we would not even tell the ship was moving!!
Make sure you check out my pictures and I will put more on Thursday!!
p.s. I get my blood tested again on monday!
Love to you all, Taylor
Thursday, September 21, 2000 at 09:37 PM (CDT)
Hello,
Well we had a great weekend in Orlando (except for sunday) because the hurricane was so close it was a very wet day so we went home early. But that was ok,we are now going to use our disney tickets on saturday then get a room in Orlando and leave for our cruise on sunday (from Port Canaveral)
We are so excited, I can't wait to go swimming on the ship. We will be going to Nassua, Freeport, and Castaway Cay and then we will be back on thursday.
Friday when we got to our hotel the first thing we did was go swimming and they even had a big water slide. Landon and I both went down all by ourselves and we liked it so much we spent most of the time going down the slide. Then we even seen my doctor and his family there swimming, so I had to show him how well I can swim. We then got cleaned up for dinner and a bus took us to the Hoop de do, it was alot of fun. We also seen several of my nurses there, (they were all there for the seminars) This was for all cancer kids in the state of Florida.
Saturday mom and dad learned alot of important information like late effects,which can cause problems with my central nervous system,endrocrine system,thyroid,ovaries, and just about everything else in my body has to be checked on a regular basis and for any learning problems, it was good information but mom and dad really did not want to think about this right now.
While mom and dad were in the seminars me and Landon were having a blast, I was in with all 5 year olds and they kept us very busy all day, I even got to be with one of my friends from the hospital, Abby, so we had the best time. Landon was doing fine until mom had to stick her head in the door and check on him and he seen her. He did not want mom to leave again so mom just had to hang out for a minute and then he was fine, they just brought out cookies so he was happy.
Saturday night we ate with all our friends and ran around the hotel until it was time for bed.
Thanks to the American Cancer Society we had the best time!!!!!!!!
Monday I had to get my blood tested again and we just got the results today,and I am still HAMA positive!!! Hurraaahhhh!!! So this means I am good for another three weeks and I will get it tested again on Oct. 9th.
Thank you for your prayer!!!!!!!!
Bon voyage!!!
Love Taylor
Thursday, September 14, 2000 at 08:28 PM (CDT)
Hello Everyone!!
I have been feeling great and I have so much energy that I just can't find enough things to do. I love going to pre-k and my teacher said today she thinks I am ready to read, so we are going to start working on that.
I get my blood tested again on Monday, and then New York will call us on wed. night and let us know if I have to go back to NY or not yet. I hope I can keep my HAMA (the immune to the antibodies) for a little longer because we are going to go on the Disney Cruise on Sept. 24 and if I have to go to NY we will have to cancel and reschedule. That is what I picked for my wish.
Tomorrow we are going to Orlando for the weekend and we are staying at one of the disney hotels (Coronado Springs). This is all thanks to the American Cancer Society, they are doing this for childhood cancer patients and families. Saturday they are going to have seminars for the moms and dads and then the kids will be taken care of by volunteers. Then on sunday they are giving everyone tickets to Disney World!!!!
That should be so much fun, I can't wait.
We are going to leave right after me and Landon get out of school, and when we get there we are going right to the pool, they sent us a picture and it is HUGE!!!!
Thanks for your prayers!!!!
Love you, Taylor
Tuesday, September 05, 2000 at 09:45 PM (CDT)
Hello Again,
I love being Home!!!I have been having so much fun, we have been very busy going to birthday parties, (alot of my friends all have birthdays at the end of August) I love going to pre-school again, Landon really likes it too. Yesterday was my birthday and I am now 5 years old and Landon is now 3 his birthday was Aug. 30th. I had my birthday party on Saturday and Landon had his on sunday.
On monday I had my blood drawn and it was sent to New York to be tested to find out if I have a HAMA (Human Against Mouse Antibody) that means it will tell us if my body has built and immune to the antibodies. New York would then call us on Wed. to tell us if we had to be in NY on Monday or not and guess what???? I have a HAMA!!! Yippy!! my body allready built an immune to the antibodies, which is what the doctors want, so now they want me to lose it, so I can go back to New York and get treatment again. (that is what the doctors have found to work the best, get a HAMA, lose the HAMA and then get the HAMA back again) So I think I am pretty lucky to get a HAMA so soon because it is not easy living out of a hotel (Ronald McDonald House) for two weeks at a time and you have to be away from all your family and friends, not to even mention the cost. So we want to cheer on my friend Chris Becker because he started his 5th round today. GO CHRIS!!!! Mom was really happy because she was not ready to go back to NY yet. So now I will get my blood tested every three weeks to find out if I have lost my HAMA or not, the next time will be on Sept. 18th and if I lost it we (mom and I) will have to be back in NY on the 25th.
Now I will tell you about my birthday party!
We had a little water park set up in our back yard and it was alot of fun. We put our big blow up pool at the end of our slide (from the swing set) and had slip-n-slide, a water limbo, a crazy daisy and another toy that sprayed out water. We even had a pinata full of toys and candy, and my birthday cake had the Powerpuff girls on it. I got alot of nice gifts and I even got a gift card from Toys-r-us (thanks Chris & Jenny) so yesterday we went shopping (Landon got one too) I had so much fun I found alot of things I liked but I had to pick out my favorite and put back the rest. Landon couldn't decide what he wanted, he really wanted to get a motorized motorcycle that you ride on, but we told him he had to find something else. After being in the store for over an hour dad finally had to pick something out for him.
I am happy to be home for a while because I am really having fun just being a kid, and doing things that other kids my age are doing and not having to worry about treatment, hospitals and all that stuff!!!!!
Thank you for your continued prayers and support!!!!!!
P.s. check out my new pictures!!!
Love Taylor
Wednesday, August 16, 2000 at 09:02 PM (CDT)
Hello,
Well we are finally home!!yeeh!!
My treatments are going good, I do experience alot of pain some days but, to tell you the truth -I don't always remember. Thursday I had an itchy attack and I could not stop, so I was a little upset about that. My auntie Sharon (who lives in Connecticut) came to visit me and we made a few necklaces out of noodles and beads, I was happy to see her again, Landon was to because he wanted to go home with Sharon. Then for dinner the Ronald McDonald house had a barbeque (sponsored by volunteers) hamburgers and hotdogs, chips and soda. They had two clowns with ballons and they had games, candy and a tattoo stand.
Friday was not to bad of a day my stomach hurt a little bit and then I threw up, twice (all of my McDonald's french fries) I then told mom I was not going to eat french fries ever again. Then after my treatment we went back to the RMH and dad and Landon were napping so I joined them and mom went window shopping. Then for dinner I made a pizza all by myself (volunteers brought the supplies) it was alot of fun!!
Saturday we walked a few blocks and took the subway to south Manhattan-Battery Park then we got on a big boat (ferry) and we seen the Statue of Liberty, it was very big and beautiful. Then the ferry took us to Ellis Island and we learned a little history about the immagrants that came to America,(not)Mom and dad couldn't even read about the history because they were to busy chasing me and Landon around. (It was a fun place to run and play hide-n-go seek) We did not stay there very long and then we took the ferry back to the big city. Then jumped back on the subway, that was really neat, "we were under ground in a train" Landon thought it was pretty cool too.
We then cleaned our room and took a taxi to the airport only to discover that our 6:30p.m. flight was cancelled and then we were put on a 6:00p.m. flight but that one was running two and a half hour late. When we got to the gate to check in they told us that we were booked on the flight leaving on Sunday, so we told them we have to get to Tampa tonight because my medicine was in our bag and we need it. (we will now carry it with us) so they put us first on the stand by list and they stopped taking names after they reach 125 people. All this mess was caused by the weather. We finally got on the plane at 10:15 and had a stop in Atlanta and we did not know if there would be a plane leaving that late to Tampa until we got in the airport and asked the flight attendant and she said "you better hurry because it is leaving in 5 minutes" so we ran and then had to say good bye to dad because he was staying in Georgia to work. We were all tired and Landon was crying because daddy was not getting on the plane with us. We finally made it home at 2:30 a.m. and Landon was hungry and wanted a baked potatoe so mom had to make him one.
Then after an hour of sleep (for mom) Landon woke up crying that his ears hurt so mom was up until 5:00am trying to make Landon feel better.
Sunday I woke up at 8:00 (because I slept on the plane) and was ready to go to my friend Melinda's birthday party which was in Sarasota (an hour drive) but first we had to go to our preschool at 1:00 to meet our teachers and then we drove to Sarasota.
I had alot of fun (mom was a little tired) Landon's ear was ok so he had fun too, then on the way home from the party we had to go grocery shopping because we had no food in the house so we did not get home until 8:00. Then Landon woke up around 12:00 a.m. and wanted to watch tv so mom slept with him on the living room floor, watching cartoons half the night.
Monday morning I was ready to go to school, mom and Landon were still tired and mom decided to take Landon to the doctor (he has had a cough and started getting a runny nose) so Landon missed his very first day of school. I had a lot of fun, I am so glad to be back in school again. Landon had a sinus infection and is now on an antibiotic, the doctor said he was not contagious so he could go to school.We both go to school from 8:45 until 12:15.
Tuesday we both went to school and Landon had fun, mom and I both walked Landon to his class and said good bye and he was to busy to say good bye he had already found something to play with.
Today we had another fun day and I got to be the line leader.
We will not know if we have to go back to NY until the week before, they will draw blood from me on Monday and they will send it up to NY and the doctors will call from NY on Wednesday to let us know if I need to come back or not. So if I do have to go back we will be leaving on September 4th (thats my birthday, I will be 5 years old).
P.S. I think a miracle did happen because we had the doctors in NY look at the bone scan that they did in Tampa and they did not see anything!!!!! We were told that there were several doctors that looked at the scan and came to the conclusion that there was something on my bone scan. So either all the the doctors in Tampa really saw nothing that they thought was something or I had a little help from the good Lord himself. We think it is truly the work of God!!!!!!!
God Bless, I Love you All
Taylor
Friday, August 11, 2000 at 01:42 PM (CDT)
Hi everyone,
I'm still in New York and today I had my last dose of anti-bodies for this trip. The week ended a lot better than it started. On Monday I had a lot of pain(everyone says Mondays are usually the worst),it always seems to be my tummy that hurts the most and I get a headache too. Some very nice lady saw me when I was really hurting and she came in and gave me a Barbie doll from FAO Schwartz, That was very, very nice of her. I don't know who you are but THANK YOU!!!
Tuesday was a little better but I still had some pain. We got by with just 2 doses of pain medicine so at least I woke up by around 6:00 and then since we didn't get to go to Central Park on Mon. I told mom and dad that we had to go there and also get some McDonalds french fries.
The Wed., Thurs., and Fri. treatments went much better, I only needed one dose of pain med. and some Benadryl for the itching I had on Thurs.
I have been very busy in the toy room every morning. Landon and dad come and hang out with me there every morning until its time for me to stay in my bed which works out good becuase that's when Landon is ready for his nap (I think dad takes one too).
We are hoping that my body will build a HAMA(human anti-mouse antibody) now. That is what the doctors want to happen. They said it is rare to happen after the first round, but, sometimes it does and I am a very strong girl with a very strong little body. Please say some extra prayers for me.
Then I wouldn't have to come back for another treatment until the HAMA went away.
If it doesn't rain here tomorrow we are going to go and see the Statue of Liberty and see some other sights. Maybe we'll do a little shopping(thats what mom would like and it is her birthday tomorrow)
HAPPY BIRTHDAY MOM!!!!!
Thank you to everyone that sent Landon and Me the presents and cards we like to get things in the mail.
My next update will be from home and we'll all be happy to be there.
Thank you all for all the prayers!!!!
Good Bye and GOD BLESS
I Love You
Taylor
Thursday, August 03, 2000 at 04:16 PM (CDT)
Hello from New York,
We mad it to NY, our trip was a little interesting, we had a lay over in Atlanta and dad had his cell phone stolen. Then when we got to NY the car we called was an hour late to pick us up so we did not get to the RMH until 1:15 a.m. I was very tired. We thought we would do some sight seeing on Sunday and it rained all day,so we did not do much.
Monday I started the antibodies and it was very painful,(they told me I did good for the first day) I was on so much pain medication, I slept until the next morning, I did wake up a few times (I got sick twice)
We left the hospital at around 5:30 p.m. and mom and dad put me in the stroller and brought me back to the RMH.
Tuesday was a little better I was not in much pain, but I was very well medicated so that made me throw up twice. I slept til morning.
Wednesday mom and dad told them to try less pain med. because I was only eating breakfast and that was it. So I did good, I was not in too much pain and I was awake by 6:30 p.m. and by 8:00 I was eating french fries from McDonalds. I even made a necklace from beads at the RMH.
Today was even better, I did have some pain but they did not have to give me to much pain medication because we left the hospital at 3:00 and am still awake and playing in the toy room. We were going to walk to central park again (we went there tuesday but I slept in my stroller the whole time) but then it started to rain.
Everyday I could react different from the antibodies, I will have good days and bad, so far I think I am doing great!!!
I'll talk to you soon!!!
Love You All, Taylor
Saturday, July 29, 2000 at 07:34 AM (CDT)
Hello,
I am still in the hospital but my fever is gone and I get to go home today, only to pack and then we leave for NY tonight. We could not get a reasonable priced flight if we left on sunday so we have to leave tonight and will get to NY around midnight. All four of us are going again, but this will be the last time dad can come because he won't be able to take off any more time from work. So over the weekend we are going to try to do some sight seeing. I start the antibodies on Monday and we will be there most of the day, if we are lucky I will be done around 3:00 everyday.
Nothing grew in the blood cultures that they took so I guess that means I just had a virus or something. I just have a cough and a little bit of a runny nose.
The address to the Ronald McDonald House is
405 East 73rd Street
New York, New York 10021
(212) 639-0100
We will be there until August 12 (mom's birthday) we don't fly out until 6:30 and will get to Tampa just before midnight.
Mom and dad are going to do some investigating to find out what happened to the spots in my legs that they thought was Neuroblastoma!!!! God can make miracles happen you know!!!!!
Wish me luck in NY and hopefully the treatments won't be to painfull, we have been told it can be very painfull at times, but it goes away by the end of the day (then I start all over the next day)
Thanks for the prayers!!
I Love you all, Taylor
Friday, July 28, 2000 at 06:46 AM (CDT)
Hello,
Taylor is back in All Chilren's Hospital she had a low fever on Wed. (she started getting on on the drive home to FL) and it returned last night, anything over 101 we have to bring her in and it was up to 103.
Hopefully it is just a bug she picked up in NY and we can still fly Sunday, to start the antibodies on Monday.
The docs in Ny told us that all the test came back clean, so now we are just puzzled because somebody is wrong, hopefully it is the doctors in Tampa. When we get to NY on Monday we are going to have the doctors look at her bone scan and see what they see, if it is the same that the doctors in Tampa saw, was there something in her legs or did they just read her scan wrong. And if there was something, where did it go, did it just disappear???? I will let you know what we find out. Was it a miracle??
I will also give everyone the address to the Ronald McDonald House in NY so if anyone wanted to send Taylor a letter or pictures I'm sure she would love that!!
Thanks for the prayers!!
Love Angie
Tuesday, July 25, 2000 at 10:56 AM (CDT)
Hello Everyone!!
I'm back, it's me Taylor
We arrived in NY late tuesdy night, we flew up in a private jet (thank you Susan and Gary Wright) and checked into the Ronald McDonald house at 12:15 a.m. (Landon was still going strong)
My bone scan was on wed. My CT scan and bone marrow aspirate was thursday, and my MIBG scan was friday, I was the perfect patient for everything.
We walked to Central Park and it was beautiful.(I'll tell you more later)
Friday night my great Aunt Sharon & great uncle Decio (I now call him grandpa, I told Sharon she was to young to call grandma) came and picked us up for the weekend and we went to their house in Middlebury, Conn.
We had a great time and the weather was beautiful, I fell in love with my cousin Marcos and just called him boyfriend. I even loved his girlfriend Michelle. We even went blueberry picking and then made some fresh blueberry muffins.
Then monday we were told that all the test results would not be back until tuesday and we rented a car and drove back to NY from Conn. (only about a two hour drive) Tuesday morning I had to get an echocardiogram and then talk to the doctors about my results.
Well monday night the doctors called us with some of the results we still don't have the bone marrow results or the VMA levels in my urine. but we did find out the bone,CT and the MIBG and so far the doctors are telling us that things look good, they think I COULD BE CLEAN OF CANCER, we will not know for sure untill later today but I KNOW GOD IS ANSWERING OUR PRAYERS!!!!!!!!!
If all my test come back clean (or not) I will still be getting the antibodies, and I will be scheduled to start on monday July 31. As soon as we find out we are driving back to Florida to get things ready to be back in NY for 2 weeks. ( then home for 2-3 weeks then back to NY for 2 weeks, and this could last up to two years)
WE ARE SO HAPPY, THINGS ARE LOOKING BETTER EVERY DAY AND WE JUST KNOW THAT THE REST OF THE TESTS ARE GOING TO COME BACK CLEAN, THANK YOU SOOOOOOOOO MUCH FOR ALL THE PRAYERS, THEY ARE WORKING!!!!!!!!!
THANK YOU ALL, AND THANK YOU GOD FOR LISTENING!!!!
I LOVE YOU ALL SO MUCH,
LOVE TAYLOR
Tuesday, July 18, 2000 at 05:44 PM (CDT)
Hello,
this is going to be short because we are leaving for New York in 10 minutes.
Taylor will have tests run on Wed. Thur, and Fri and then they will let us know if we can start the antibody treatment on Monday or not.
The insurance called and they are going to pay for some of the antibodies, so that at least gets us in the door.
Have to go! Keep praying for us, I will try to update soon!!!!
Love you all,
Jeff,Angie,Taylor and Landon
Saturday, July 15, 2000 at 02:28 PM (CDT)
Hello Everyone,
I am writing for Taylor this time because she has no idea as to what is going on, and if she did she might get very depressed. Tuesday (7/11)she woke up with terrible pain in her legs and this time it was in both legs, we thought that maybe it was from her G-CSF shot that she was given on Monday night, but then during the day it was hurting her so much that she had a hard time standing up. All day she kept saying to me "mommy why does everything have to happen to me"
Wednesday morning we went to the clinic and they did not know what was causing the pain, so they wanted to do a CAT scan so we agreed and told them to do a bone scan at the same time since she was do for one in another 3 weeks.
Thurday we went to All Children's Hospital and had both scans done, we thought that it was going to be something minor. Later that night the doctor call us and said the results of her bone scan did not look normal, and that the neuroblastoma was back and in both legs and possibly one arm.
Friday morning we went in to talk to the doctor so she could tell us what our options are and we were told that the hospital here in Florida could no longer help us. Taylor is to week to have any kind of treatment like in the past. The doctor said it was very rare for the cancer to come back this soon, and that going to New York would be our best hope.
We will be flying to New York either Wed. or Thur. and they will do all the test on her like another bone scan, CAT scan, MIBG scan, PET scan, another bone marrow aspirate and maybe more. We are hoping that insurance will pay for her to have the antibodies and then they might start that on the following monday. Even if they are not willing to pay for it (since antibodies are still an experimental treatment) we are ready to sell everything we have just to get this started.
Please pray for her as much and as often as you can because I think she is in God's hands now.
Thanks and Love to All,
Jeff, Angie, Taylor & Landon
Tue Jul 11 2:04:54 CST 2000
Hello
My how time flies when your having fun!!!
I promise I will update every week, we have been so busy. Mom likes to keep us busy, she said that Landon and I don't fight so much when we are on the go. We have been swimming and spending alot of time on the boat and at the beach.
I started taking my new pill (accutane) on June 29, and I did not like it at all, I just had it in my head that I was not going to take it, (I get moody sometimes) Well after 3 days of mom and dad pulling their hair out I finally decided that maybe it wasn't so bad and things have been going smooth ever since. I have to take two pills in the morning and two pills at night, they are gel caps and mom or dad poke a pin in the pill and then squeeze the liquid in my mouth. This makes my skin very dry, my lips have been peeling and cracked so they are a little bloody, my face is a little flakey but it doesn't bother me to much. I still feel ok, every now and then my tummy hurts but it doesn't last to long.
On July 3rd I had to have another bone marrow aspirate because I was having some pain in my leg and my blood counts have not been bouncing back like they should be. That gave us a little scare because the doctor said there could only be three reasons for this and one-the cancer came back, two-my bone marrow has been damaged from either the chemo or radiation, three- I have a virus.
After 3 days of waiting for the results we were told the cancer in not back but my bone marrow has been damaged and only time will tell what it is going to do, hopefully it will repair itself over time. Until then I have to get my shots three days a week.
My hair is getting a little thicker, I think I am going to have a few different colors because some parts look blonde and other parts of my head look brown. I am still bald at the top of my head where I had the radiation, and if you seen me from a distance I still look bald, my hair is still baby fine.
Mom signed Landon and I up for preschool we will be going Monday thru Friday from 8:45 to 12:15. So mom is going to look for a part time job (since preschool is so expensive) I am going to be in a pre-K program since I will be going to kindergarden next year, and Landon just needs to be kepted busy all the time and I think he will really enjoy being with other kids his age, (he needs to learn a few things to)
Thanks for all your prayers, keep praying and I am sure my bone marrow will start working on its own again.
Love Taylor
P.S. Landon, Mom and Dad want to say Hi and thank you.
Tuesday, June 20, 2000 at 08:46 PM (CDT)
Hello Everyone!
I am done with my radiation!!!! I finished last thursday, June 15th. I did not get sick and I still feel great. My counts still go up and down, I have to get my GCS-F shots a few times a week, but that doesn't bother me at all any more.
Every night I still have to take my medications, my Diflucan and Dapsone(I still have to take these for the next year). Then starting next week I will have to start taking Accutane and that only comes in a gel cap so I have to learn how to swallow pills. The accutane I will have to take for 6 months (2 weeks on, then 2 weeks off) This may cause a few side effects like nausea, vomiting,diarrhea, very dry and chapped skin and a very dry mouth. Most kids will experience all of these, especially for the first month. The accutane is actually a acne medication but they give it to cancer patients in a very high dose, they say that if there is any cancer left in my body it will mature the cancer cells so they can not reproduce.
I was getting a few cramps in my knee and leg over the weekend but the doctor thinks that that is just a normal kid thing because I have been so active.
My head is looking a little fuzzy now, you can't notice it too much because my hair is very fine and we still can't tell what color it is going to be (I'm still hoping for pink) My eye lashes are still growing and they are getting really long, dad thinks we might have to trim them.
We have been staying very busy, we even went to the mall the other day and I had french fries and chicken nuggets at chick-fil-a, it feels great to go out and not have to wear a mask. We have been going to the beach and we have been doing alot of swimming in the pool.
Saturday mom was in a ladies Tarpon fishing tournament in Boca Grande and she had the winning fish on!!! Mom was so excited, she knew it was a big fish from the way it was fighting and then it jumped out of the water and they seen exactly how big it was, they were guessing that it weighed at least 150 to 160 pounds. Then after 30 minutes of fighting the fish a shark seen it and that was the end of moms fish, the shark actually broke the line. They did have alot of fun even though they could have had $13,000.00 that was the 1st place prize and the winning fish only weighed 138lbs. They will just have to try again next year.
Thank you for all the prayers and support, God Bless you All!!!
Lots of Love, Taylor and family
Tuesday, June 06, 2000 at 09:11 PM (CDT)
Hello,
Today was my 8th day of radiation and I have been feeling great, I still have all my energy and I don't even feel sick. We have it scheduled for 8:45 a.m. so mom has to wake me and Landon up every morning and sometimes we like to sleep in, but once we get moving we stay busy all day long.
We have been doing alot of swimming, mom says that I am turning into a fish. Unfortunately both me and Landon ended up getting swimmers ear in our right ears,but we took care of that right away, we only needed ear drops.
Saturday dad was in a fishing tournament (Tarpon) his fish came in 3rd and it was 130 pounds. He did not win any money, only 1st and 2nd place win. So I guess it is going to be up to mom to win some money she is going to be in a ladies tournament on the 17th.
Sunday Landon decided to cut his hair, and I did not tell him to do it!!He did it all by himself, when he was done I went out and told dad. I think Landon wanted a hair cut like mine!!! Well now I think he is going to get one because he cut his hair so it looks like a backwards mohawk. He cut it right down the middle and it is really short. Mom and dad just had to laugh, now they are going to have two bald kids!!!
My hair is starting to grow but you cant see it unless you look really close.
Then sunday afternoon we went over to Chris Beckers house, they had a cook out for some of the neuroblastoma kids, we had a great time swimming in their pool and then we all went in the house and played with all the toys. It was nice because all the parents got to talk about what is going on with all of us kids and what is going to be next.
Monday after radiation I went to the clinic to have my counts checked and they went back down again so mom has to start giving me the G-CSF shots until friday.
Thank you for your continued prayers and support!!!!!!
Love Taylor
Wednesday, May 31, 2000 at 08:30 PM (CDT)
Hi everyone,
Mom, dad, and me went to the N-SYNC concert! I was so excited on the way to the Ice Palace, I kept asking if it would be as loud as when I play their CD and if the girls would be going crazy and if we would get to meet them and alot of other questions too. I wanted to give Lance a kiss, if we got to meet them. I could hardly stay in my seat all the way there. When we got there mom and dad tried to find someone to get us backstage but they didn't have any luck so I had to settle for blowing kisses to all of the band. They played all of my favorite songs. I was having a great time but all of the girls around us were screaming so loud that it hurt my ears even with ear plugs so we didn't stay for the whole show, besides, it was getting pretty late and I was getting tired.Now I want to go see the Backstreet Boys when they come back.(Dad will have to get some really good ear plugs for that)
I started radiation last Thursday. I've had 4 doses now and, thanks to everyone who is praying for me, it hasn't bothered me at all. The radiation team is very impressed at how good I am at not moving after they get everything lined up ( I just don't want them to hit any parts that don't need to be radiated). We are all praying that the dose of radiation I'm getting is low enough that I won't have any side effects later. Do you want to know something? With as many people as there are praying for me, and with my guardian angels, and with God on my side, AND AS STRONG AS I AM, there isn't anything I can't handle. Just like I said when I first found out I had cancer, WE WILL BEAT IT!!!!!!! I have to get 11 more doses and then I'll be done with the radiation.
My blood counts are still coming back good also. My ANC still drops some but a dose or two of G-CSF shoots that right back up there. I haven't had to get any blood or platelets since since I got out of the hospital after my transplant. That shows how strong my body is when I need it to be.
Oh ya, I almost forgot to tell you, my hair is starting to grow!!!!! It's still hard to see but dad checks it out every day. It won't be long now!
I had a great Memorial day wknd. too. On Sunday we went to a pool party at Alan, Beth, Morgan, and Boo's house. Their pool is 6 feet deep and I dove all the way to the bottom and picked up a purple plastic egg , everyone at the party was impressed. Then, Landon had a little accident and fell down the steps by the pool. He got a BIG bump on his forehead and a scrape from between his eyes to his top lip.(he's O.K. though, he doesn't have any important pictures coming up)
Then on Monday we went to another pool party at Mike and Judy's house. They live on a canal so we got to swim and fish all afternoon. Then our friend Chuck put 2 fish in the swimming pool for us to chase around. That was alot of fun.
I'll write again soon.
Thank you for all of your continued prayers! It is definately working.
Good Bye, I Love You All
Taylor
Tuesday, May 23, 2000 at 12:09 PM (CDT)
Hi everyone. All of your prayers are working because I have been feeling GREAT! And, you know what, my eyelashes and eyebrows have started growing back!!! It shouldn't be long before my hair starts growing too. I hope the radiation doesn't affect the way it grows, Dr. Thomas said it may change the color or texture a little. Oh ya, I haven't started the radiation yet because my ANC. just has not wanted to stay high enough (they want it above 1500 without G-CSF). Then mom will give me a dose of G-CSF and my counts jump to over 20,000. Dr. Thomas told mom and dad that we would be starting with radiation on Thursday the 25 regardless. Mom and dad still are not at ease with this radiation stuff even though they know that it will help to keep the cancer from coming back.
I have been doing a lot of swimming since I last wrote to you. I have a big inflatable pool that me and Landon get in and out of about 10 times a day. I would stay in there longer but it has been pretty hot and I still don't like to be the sun too long. Dad, Landon, and me went to the Hagen's when mom went on vacation so I could go swimming in their big pool. I jumped right in and after a few minutes I was swimming from the steps all the way to the other side of the pool and back. Then when mom got back home we went to my friend Emily's house to swim in their pool and I really surprised mom when I did 3 somersults under water without taking a breath (Ididn't forget anything about swimming).
Last night mom bought me a really,really good present, even though me and Landon have not been on our best behavior. She bought tickets to the N'SYNC concert at the Ice Palace for her, dad and me. We'll have to get someone to watch Landon. I'll let you know what I thought of the concert, I asked dad if it was going to be as loud as when I play my CD, he told me he would bring something to plug my ears.
I will try to update a little more often but testing mom and dads patience takes up a lot of Landon's and my time. Thank you for all of your prayers and please say some extra prayers Thurs. and the next 15 weekdays after that, thats how many doses of radiation I'll get.
I Love You All and God Bless You
Love Taylor
Monday, May 08, 2000 at 08:45 PM (CDT)
Hello,
Sorry that I have not updated my journal but I have been having so much fun it's hard to find the time. Since I last wrote I am now eating more than ever and I feel great, we stopped the TPN (the fluids I was getting for 12 hours at night) on Saturday April 29th. Tuesday I had my cat scan and we did not find out the results for that until thursday and the doctor said that "THE SCANS WERE CLEAN" which means THERE IS NO SIGN OF CANCER LEFT. So we were very happy to hear that and now I just have radiation and that should have started this week but my counts have to come up more,(my bone marrow has to work harder to produce and it just needs a little more time)if they started radiation to soon my bone marrow may not ever bounce back so we want to be sure that I am ready.
On thursday we are going to see the radiologist and he is going to get me ready for my radiation. They make a mold or mask and that will help them to line up the radiation beems so it will always hit the same area in my head and abdomen. Mom and dad still have to talk with the doctor about all the side effects. This will take about one to two hours to set up, after that when I have my radiation it will only take about 15 minutes, I should be ready by next week.
We went to the Tampa clinic today and my ANC was 700 and last friday it was at 800 so they had to start my G-CSF shots again, mom had to give me my shot tonight and I only screamed for a second, I will get one more shot tomorrow and then on thursday I will have my counts checked again and hopefully they will be much higher.
We are still working on going to New York for the antibodies, we just have to find a way to make the insurance company pay for at least some of the cost because we were told it is very expensive and if you don't have some type of coverage they won't even touch you.(It could cost up to a million dollars) "but hey, I think I am worth at least that much." We will find a way.
Now back to the fun stuff, I have been meeting my friends at parks, I went to the beach by Tanner and Kyles house (my cousins)and collected some shells. I went to my cousins baseball game (Matt & Bryan)they even won!! I have been riding my bike and my barbie jeep. Yesterday I even went rollerblading. I don't stay out to long because the sun wears me out, so I just go in the house and rest for a while and then I am ready to go again. My skin is starting to look better, if you seen me it looks like I am dirty and in need of a bath, but it is just dead skin.
Please remember to keep me in your prayers (for the next ten years) because they said if I can stay in remission for that long that I won't have to worry about ever getting cancer again.
I Love you all, Taylor
p.s. I have new pictures of me and the fish I caught
Wednesday, April 26, 2000 at 11:25 AM (CDT)
Hello Everyone!!!
I'm happy to say that I am HOME, I got home on friday at 3:00 and I have been feeling pretty good. Last week went by fast they started decreasing the morphine and ketamine on sunday and by thursday morning I was off all pain medication and wednesday was my last day that I needed an antibiotic. We just kept telling the doctors that we would like to be home for Easter. They said I just needed to eat and drink more and I would be able to go home, well I just did not want to eat anything (nothing tastes good and my stomach still hurts a little) They sent us home but then said I had to be given fluids at night so my mediport is accessed and mom and dad had to learn to do that (they will be fully trained nurses by the time we are done with this) The fluids have calories, fat and vitamins and have to run for 12 hours. I tried to eat friday when I got home I took a few bites of dinner but then a few minutes later a threw up. I did not like that and now I am just scared to eat anything.
Sunday the Easter bunny came to my house and I got a new outfit with a matching hat, (Landon got one too) then we looked outside and we seen tons of easter eggs in our back yard, they were filled with chocolate and money. I kepted the money and let Landon have the chocolate.
Monday we had an appointment at the clinic and the doctor said I looked a little dry and we had to stay for an hour, long enough for me to get some more fluids. I did not need any blood or platelets. The doctor also told me that she is starting to get a little worried that I have not been eating. I said I would try again, and when I got home I did eat a piece of bread with butter on it. (and I did not throw up) I drink only water and apple juice but only a few ounces a day. Mom and dad keep telling me that I will have to go back into the hospital if I don't eat and drink more.
We have not been doing to much because I get tired and want to sit down, so we just play at home.
Next tuesday I will be having a cat scan again and a hearing test and that will let us know how I am doing. My radiation will start in about two weeks, (after my counts are up and I have been eating and drinking)
My radiation will last for three weeks and they said it could be a little rough on me, (makes you tired and week and sometimes will get sick) I will have to get radiation on both tumor sights and the chances of any brain damage is not for sure yet they will know more after my scans on tuesday.
Mom and dad are checking on a treatment in New York at the Memorial Sloan-Ketting Hospital that is called anitibodies and it is suppose to help my immune system fight off any disease in my body (including cancer) they have been working on this for 5 years and they said it could increase my chance by 15%. Right now they are guessing that I will have a 60% of surviving and with this antibody treatment it could increase that to 75%. Neuroblastoma is very well known for coming back and two-thirds of the kids will get it back and the outcome is not so good once it comes back. This treatment is on outpatient treatment and we will have to stay at the Ronald McDonald House and treatment will be for 10 days Monday-Friday. Then we will fly home for three weeks then go back for another 10 day treatment then go home for three weeks and this could last for up to two years. They will not know how long it will take everyone is different. Insurance will not cover this because it is still considered experimental. This will be 6-8 weeks after my radiation. (mom will tell you more later)
I ate a few chips today and a couple bits of maccaroni and chesse and I think my tummy liked it. I just don't want to eat to much at one time because my tummy has not had any food or juice in over three weeks so it has to learn how to funtion again.
Thank you for thinking of me and keep praying (pray hard on tuesday) for me.
Love Taylor
Sunday, April 16, 2000 at 08:37 PM (CDT)
Hello,
I am so happy that this week is over, it has been a very difficult week not only for me but mom and dad as well.
Monday they had raised my morphine to 4.0 ml per hour and that just was not taking care of the pain and they did not want to give me any more. So in addition to the morphine they gave me Ketamine (which is used in surgerys for sedation.) I still was in pain and not getting much sleep so on wednesday they found another drug to add to the list called Thorizine and that made me sleep, which made mom and dad very happy.
During this whole week I had diarreha on and off so of course I spent alot of time on my bedside commode, with my puke bucket in hand(that did not leave my side for one minute) I did not throw up to much, but holding on to my bucket made me feel better.
My mouth, tongue and throat hurt so much (they were all swollen)and that is were most of my pain came from . Mom and dad were in alot of pain just watching me and knowing there was nothing they could do they just felt helpless. One of the nurses told them to try and imagine having a cold sore (only worse) and having it cover your entire mouth and throat. I have also been running a fever, so I am now on three different antibiotics. They have been running cultures on my blood and one of them came back positive, which means I have some type of bacterial infection. That is not good but I think they have it under control. My skin has been itchy and it started to peel in my groin area, under my neck, my armpits, behind my knees and ears. The only real bad part is my groin area and I have a habbit of picking dead skin (even in my sleep) so that area is raw.
I have not had anything to eat or drink in about 13 days, hopefully by the end of this week I wil be able to eat something. I have not lost any weight this time because they are keeping me on plenty of fluids (which not only have calories but also fat.)
Mom said Landon really misses me, he looks at my picture all the time and says "Taylor home,mommy Taylor home" So Landon comes to visit me for a few minutes and he even knows were my room is, he runs right to it.
I don't think I will be home for Easter so I hope the easter bunny can find me in the hospital. If my counts jump back like they did last time then maybe I could get out on saturday. It's to hard to tell right now and they can only decrease my morphine by .4 every eight hours. And I am happy to say that they started decreasing it today. I am starting to feel a little better, saturday auntie Lisa came to visit me and I even let her spend the night, mom and dad were worried that I would want them but I slept pretty good and dad came back early this morning.
This has been one of the worse weeks that we have had to go through and thanks to all the love and support from you and God we made it.
Love, Taylor, Jeff, Angie & Landon
Saturday, April 08, 2000 at 09:58 PM (CDT)
Hi,
Well I made it through another week and things will only get worse before they get better, I will tell you about my week.
Monday was a good day, mom and I played barbies, danced to N'Sync (I like them just as much as the Backstreet Boys) played a few games and colored in my coloring books. I felt pretty good all day long.
Tuesday I had my transplant (my second bag of stem cells were infused back into my bloodstream) everything went great. The only thing that mom did not like was the fact that I smelt like garlic (or rotten garlic) This is very normal and common with anyone going through a stem cell transplant and the smell is from the preservatives that is used to keep the stem cells good.
I was wondering why mom kept putting her hand over her nose, she told me her nose was cold. The funny thing was that I couldn't smell it.
I have been trying to eat but everytime I eat something I just throw it back up, That made me very upset and finally I just did not want to try anymore.
Wednesday I was starting to feel week and a little sick so I stayed in bed all day. I did a few things like coloring, playing with my playdough and mom read me alot of books. I tryed to do my mouth washes every two hours and finally the pain in my throat was getting to be to much (from the mouth sores and the mucositis) so they started me on morphine. Then of course that makes me itch so they gave me benadryl to stop the itching and that makes me tired so I slept almost all day on thursday.
Thursday night dad came back to take the weekend shift. My pain was getting worse so they increased my morphine, they started it out at .4 per hour and then I have a button that I can press that gives me a little extra (.3) and I can press that every 20 minutes.
Friday and Saturday were about the same, I am still in alot of pain and the doctors are still increasing my morphine and it is now at 2.0. They can only increase it a little at a time. I do have a few mouth sores in my mouth but most of my pain is in my throat. The only time I get out of bed is to go to the bathroom and that is more times than what I would like but I have had diarrhea since wednesday.
Mom and dad will doing alot of research on my next step which will be radiation. They will probably want to do it on both sights of my tumor and as you all know my secondary tumor was on my head. If they have to do this, one of the side effects could be brain damage. Once we get the all the scans taken again, mom and dad are going to send them to New York and have the doctors up there take a look.
Thank you all so much for praying for me!!!
Love Taylor
Sunday, April 02, 2000 at 02:15 PM (CDT)
Hello,
Here is an update of last week:
Monday we checked back into the hospital and it was a busy day our appt. at the clinic was at 11:00 a.m. and we were finished by noon and they said my room was not ready yet,(they were cleaning it.)
My next appt. was at 2:00 to have my ears checked, so mom and I drove to the St. Pete Pier, I bought a really long pencil. We were back at the hospital at 2:00 and I lost a little bit more of my high pitched hearing (still not enough to need a hearing aid) Then at 4:00 I had an appt. for a EKG and an echocardiogram, after that were went to my room and it still was not ready so we went to the play room (I had to wear a mask all day long--to protect me from germs) Then finally at 7:30 my room was ready and we had to go out to the car (in the rain) and get all my stuff. I think mom was tired, and I just wanted to get all my barbie's set up and I did not go to bed until 11:00p.m.
Tuesday they started my chemo and I will be getting two differnet kinds,one of them will require me to take a bath four times a day for the next five days. This chemo will come out of the pores in my skin and if it is not washed off then it will go back into my body and cause my skin to peel off.
When the doctor came in that day we were told that the EKG showed something that did not look normal,so they were going to give me an EKG for the next two days, the heart doctor came and told mom that if it got any worse that I would need a "pace maker" well we prayed really hard and when they took the next two EKG's they came out normal, so they think it was just a fluke, and told us not to worry about it right now.
Wednesday (still feeling good) Grandpa and grandma came to say their good-byes they were leaving to go back to Minnesota thursday morning. We will all miss them they have been absolutely wonderful, and a big help with taking care of my little brother. They brought Landon with them and we had fun playing with the kitchen set that Kelly (from child life) brought into my room.
Thursday (still feeling good) I played with my barbies,the kitchen and played some games. Dad and Landon came to visit and then mom went home with Landon, I was very sad to see mom leave, and I called her as soon as she got home. Thursday is also bingo night and I got two bingo's, and then the Hagen's came to visit me and I was starting to feel a little nausous by this time.
Friday I was getting a sick feeling in my stomach and got sick when I smelt dads lunch so no more smelly foods in my room. I was tired and slept about half of the day.
Saturday I took another long nap and this was the last day of my chemo and the last day I would have to take four baths a day. I did enjoy the baths because Jillian (another transplant little girl) let us borrow her blow up swimming pool.
I will need alot of prayers for the next two weeks because we were told things will be worse than the first transplant (Mouth sores, ext) Dad noticed that the inside of my cheeks are starting to get white and that is the first sign of mouth sores.
Today is considered my "day of rest", no chemo, then tomorrow they will put my stem cells back in. I had gotten sick a few times already today and I just want to sleep.
Hugs and Kisses,XXXXXOOOOOOO
Love Taylor
Sunday, March 26, 2000 at 08:57 PM (CST)
Hello,
Well I am going back to the hospital tomorrow (Monday the 27th) I have my bags packed and I am bringing all of my barbies.
I will be checking in at 11:00 a.m. and I think I am ready, I am a little bit sad that I have to stay in my room. I don't know yet if they will start my chemo tomorrow or Tuesday, but I will have five days of chemo then a day of rest and then they will put the rest of my stem cells back in. They say that I will be in for 4 to 8 weeks, but they said that last time and I was out in 3 weeks. KEEP SAYING SOME PRAYERS FOR ME.
I had a wonderful two weeks at home, we spent many days at several different parks and I got to see all my friends. We even met Christopher Becker at the park on Thursday (he also has neuroblastoma and is 6 years old) we had a great time.
Saturday we went fishing and I caught a fish, it was not big enough to keep so we had to throw it back (mom caught a keeper)
I will have pictures of that next week. Today we went to Aunt Barb and Uncle Karl's house and went fishing on their dock, we did not catch anything today. Dad took us for a little boat ride and we went looking for fish, and we seen a few.
Last sunday we had a family gathering at Lettuce Lake park in Tampa which is next to the Hillsbrough River, they have this board walk there that goes through the swampy areas and we were looking for gators but we did not see any.(everything is really dry down here) We even celebrated Kyle and Chris's birthday. And it was windy enough so we flew our kites.
Thank you for thinking of us,God Bless
Love Taylor
p.s. New pictures
Thursday, March 16, 2000 at 12:29 PM (CST)
Hello,
I just wanted to let everyone know that I feel great!!! I have been meeting all my friends at the parks and I have been having a great time.
We went to the clinic this morning and they said I will go back for my second transplant on monday the 27th so I have another week at home. I was happy about that, I think we all needed more time at home.
My dad has been out of town for two nights and he comes home today and I think my mom is going to get out of the house for a while. I would like to go to but I cant even go into any stores, I can only go to parks.
Thank you for keping me in your prayers!!!
Love always, Taylor
Friday, March 10, 2000 at 10:39 AM (CST)
Hi Everyone!!!!!!!
Guess what I GET TO GO HOME TODAY!!, I am so excited, this is much earlier that what we were expecting, they told us Tuesday that maybe this weekend we could go home and I have done so well that the doctors said lets do it.
It made it a very busy few days for mom, dad and grandma because they had to get the house clean, and fast. There is still alot to do but the most important things are done.
We have to be very,very careful with everything I do and play with but I can see my friends and play outside. I will be home for about 10-14 days and then I have to go back for my second transplant.
Monday I started feeling much better and by tuesday I was off all pain medicine, and everyday we would see big improvements. I think I surprised the doctors again. I can't wait to get home, I think Landon has been missing me.
I'll talk to you all soon and let you know how my weekend went.
Love Taylor
Monday, March 06, 2000 at 08:46 AM (CST)
Hello,
I have had a bad week, last monday my mouth sores started hitting me pretty hard and they had to increase my morphine. I started having diarrhea and still felt very nauseous, so I have been spending alot of time sitting on the potty. Then we had to change my pain medication from morphine to Fentenayl (which is stronger than morphine) because it was causing me to have uninary retention. Then I was in alot of pain because they had to find the correct dose for me and that took about a day.
Tuesday I threw up my NG tube so they decided to leave it out for a while because my throat was very sore (mouth sores not only are in your mouth but they can travel all the way through your body to the other end.) So I do not have the feeding tube anymore, I was happy about that. I have not been in the mood to do anything other than watch TV and listen to the Backstreet Boys,
I have not been sleeping during the day and I think it is because of the fentenayl, it keeps me awake. My skin is very dry and ichy so we have cream for that and I have to do my mouth washes 4 times a day and it hurts my mouth. I have had ringing in my ears and they have been a little sensitive to loud music and that is from the chemo (it is damaging my ears, so I will have another hearing test before I go home to find out if I have lost any more of my hearing, I have lost alot of my high pitched hearing and it was not at a point that I would need a hearing aid but it was getting close)
Wednesday and Thursday were both very bad days, I was in pain and the fentenayl has caused me to be very moody and nobody wanted to be around me. I was on the potty alot and now I have a sore all the way around my butt, so now we have to put a cream on that. My skin is very sensitive and has been reacting to everything, it was so dry in some places that my skin was peeling and I love to peel skin so I just made it worse. I think mom and dad are ready to tie gloves on my hands so I cannot pick any more.
By friday morning mom was starting to go a little crazy and then dad came again and Saturday mom and Landon came to visit me but I was not in the mood to visit and I just watched TV. The drugs are just making me do things that I normally would not do, I have almost turned into a mad little girl.
Sunday I am starting to feel a little better and the mouth sores are going away so they cut my pain medicine in half, and by sunday night dad is almost ready to jump out of the window so we called grandma to the resue and she stayed with me sunday night and if I don't drive her insane then she might even stay tonight again.
Physical therapy has been coming in everyday to play with me and Yesterday they brought in a little trike that I rode around in my room for a while and we even played a ring toss game. Things are starting to get better, I was getting really depressed and scared that I was going to die, I still can not understand why I had to get cancer.
My counts are still at zero and maybe by the end of the week they might start to come back up, I am feeling better so that is a good thing.
Talk to you soon,thank you for praying for me!!!!Love to you all, Taylor
Sunday, February 27, 2000 at 09:28 AM (CST)
Hello,
Sorry it has been a few days since we have been able to update,(mom has not been able to get a lap top) Friday the 18th they put in my broviac and everything went well, Saturday they started my chemo (which is 10 times the dose of what I have been getting)
I have been getting sick but only a few times a day and sometimes only once. I feel pretty good, I get tired alot and have to lay down. I had chemo until wednesday,then thursday was a day of rest (no chemo) then on friday they did the first transplant of my stem cells and everything went great.
In the corner of my room we have all my barbies set up, I have a living room, bedroom and a bake shop so me and mom have been playing alot of barbies, when dad is here we play alot of Nintendo (Banjo Kazooie) Grandma stayed with me thursday night and Auntie Lisa stayed with me friday and saturday night. But from now on it is going to be only mom or dad. The nurse told us by monday things are going to start to get pretty rough. I am in the early stages of getting mouth sores and they are already starting to hurt so thursday night they started me on a morphine drip.
The transplant cordinator talked to mom on wednesday and said that I will be getting two transplants, with one transplant the survival rate is only 30% and with two the rate goes to 60%, so we will go with two. So the odds are getting a little bit better (we were orginally told that I would have a 50/50 chance)even though they took out 99% plus of my tumor neuroblastoma is known for coming back. So after the both transplants (which means we will be in the hospital for most of March and April) then I will get radiation for 15 days, they will do that only at the primary sight of my tumor. That will be an out patient procedure, we will have to drive to the hospital everyday. Then after that I will be taking an oral chemo pill for 6 months, (I take it for two weeks then rest for two weeks, ext.) Then of course I will still have to make my trips to the clinic once or twice a week to have my counts checked.
Then once I do get home we have to be in isulation for 3 months, which means I can't go anywhere, I can play outside though. They said I can't even go in water if we go to the beach, or in public pools, and no water parks. I was upset about that because we just renewed our passes to busch gardens and Adventure island. Maybe by August I can go to adventure island.
Please pray very hard this week because I think I am going to need it, I was told it is going to be about 7 to 10 days where I will not even want to move. I will talk to you all at the end of the week. Thanks
Love Taylor
Friday, February 18, 2000 at 02:13 PM (CST)
Hello,
Well I am in the hospital again and I had my surgery this morning, we had to be here at 6:00 a.m. and my surgery was at 8:00 a.m. My surgery was to get a broviac put in, its like my mediport but it is a dual, which means I can get my chemo and fluids or blood all at the same time and they did this so I would not have to have an IV in my arm. So now I have one on each side of my chest.
The surgery went well and it took them over an hour. They had to put an NG tube in my nose that even bypasses my stomach. They did this because this is going to be a very strong chemo and they want me to stay stong.
So they will keep food going into me through the tube. They also said I will be getting mouth sores and may not want to eat, it may be to painfull. I don't like tubes in my nose but I guess it is going to help me.
My room is gong to be very sterile, everything has to be wiped down before it can come in. we also have to be very carefull about my food. They said I can eat fruits with tough skins like watermelon, bananas and oranges. If I do have a watermelon it has to be washed with soap and water then wash the knife with soap and water, cut the melon once then wash the knife, cut again then wash the knife, ext. then wash the knife before cutting the inside. Then it has to be put in individual ziplock bags, and the same goes for cereal (which I like to eat) Open the box (only in my room) then pore the cereal into ziplock bags. My food can only set out for no more than 30 minutes or it has to be thrown away.
There is alot to learn but we can do it.
I had a very exciting week, Tuesday afternoon we went to the park and I played with alot of my friends and Wednesday we went to the state fair. We all had a great time, I think I made mom a little nervous because I was going on some pretty big rides and mom did not think it was such a good idea. But I had fun on all of them. Then on the way out me and Landon each got a corn dog and I ate the whole thing and Landon almost ate all of his but as soon as we got into the car he fell asleep and when we would try and take the corn dog from him he would wake up and take another bite. (Mom took a picture)
Then yesterday we went to the park again and played with more of my friends and I even meet some new friends, they all go to my church. Their moms all had a bake sale at church on sunday so we would like to thank them and everyone at Our Lady of the Rosary Church. We just can not express how much we appreciate what people have done for us. Thank you!!
Thank you for the continued prayers and support. We love you all!!
Love Taylor
Tuesday, February 15, 2000 at 08:51 AM (CST)
Hello,
We got the results of my bone marrow last week and the test from California should be back today or tommorrow and hopefully they should read the same, MY BONE MARROW IS CLEAN OF CANCER. So my stem cell transplant is scheduled for friday and I will have 6 days of chemo (very, very strong chemo that will kill any cancer that may not have been detected) and then I will have a day to rest then on the 8th day they will put in my stem cells. Then I will be watched for 35 days and then I will be checked and they may have to do this whole procedure again, (the chemo then the stem cells) So hopefully it will work the first time and then maybe by the beginning of April I will be able to come home.
Friday I went to Busch Gardens with Grandma, Grandpa, Cathy, Bryan, Matt, Jenny and Landon, we had a great time and mom and dad went to New Orleans for the weekend (Thanks to Alan & Beth Brown) they left friday morning and got back Sunday at noon. They really did not know if they should go or not but they are glad that they did. They even brought me home a few pins for my hats (I started to collect pins to wear on my hats) and a beanie bear for the Hard Rock Cafe, and a few beads of course. Landon even got some beads with fish on them, he loved it.
We are starting to get things packed for the hospital, everything has to be sterilized before it can be brought into my room. They told me that I will not be able to eat fresh fruits while I am in there and plums, grapes and apples are my favorite fruits. My mom and dad will have to be taught how to clean the house when I come home, they have to clean the carpet many times and disinfect everything. Dad said he is going to do it to make sure everything is perfect.
We are going to try and get to the state fair this week before my long stay at the hospital, play outside as much as we can and see all my friends. Talk to you next time!!
Love to you all, Taylor
Tuesday, February 15, 2000 at 08:51 AM (CST)
Hello,
We got the results of my bone marrow last week and the test from California should be back today or tommorrow and hopefully they should read the same, MY BONE MARROW IS CLEAN OF CANCER. So my stem cell transplant is scheduled for friday and I will have 6 days of chemo (very, very strong chemo that will kill any cancer that may not have been detected) and then I will have a day to rest then on the 8th day they will put in my stem cells. Then I will be watched for 35 days and then I will be checked and they may have to do this whole procedure again, (the chemo then the stem cells) So hopefully it will work the first time and then maybe by the beginning of April I will be able to come home.
Friday I went to Busch Gardens with Grandma, Grandpa, Cathy, Bryan, Matt, Jenny and Landon, we had a great time and mom and dad went to New Orleans for the weekend (Thanks to Alan & Beth Brown) they left friday morning and got back Sunday at noon. They really did not know if they should go or not but they are glad that they did. They even brought me home a few pins for my hats (I started to collect pins to wear on my hats) and a beanie bear for the Hard Rock Cafe, and a few beads of course. Landon even got some beads with fish on them, he loved it.
We are starting to get things packed for the hospital, everything has to be sterilized before it can be brought into my room. They told me that I will not be able to eat fresh fruits while I am in there and plums, grapes and apples are my favorite fruits. My mom and dad will have to be taught how to clean the house when I come home, they have to clean the carpet many times and disinfect everything. Dad said he is going to do it to make sure everything is perfect.
We are going to try and get to the state fair this week before my long stay at the hospital, play outside as much as we can and see all my friends. Talk to you next time!!
Love to you all, Taylor
Tuesday, February 08, 2000 at 06:26 PM (CST)
Hello Everyone!!!!
As most of you know my surgery was very successfull they removed 99% plus of the tumor and they only had to remove one of my adrenal glands. The surgeon was very pround of himself and said he did a very good job on stitching me back up. The incision is across my belly and above my belly botton and about 6 or 7 inches long. I was very sore the first few days but the doctors said I was doing great. I even amazed them again because by Saturday I was on no more pain medicine. They had me on morphine and I did not like how it made me feel so I tuffed it out. Everyone kept asking me if I needed anything for the pain but I just told them that it hurts only a little bit.
The doctor just could not believe that I did not want anything, he said it was "amazing".
Sunday I was feeling much better and even got out of my room for a while, and by monday I was in the playroom again playing sonic the hedgehog. I am still moving a little slow but I get around just fine.
Today before I got out of the hospital they had to give me two bone marrow asperations, that was scary and it hurt. This is going to tell us if my bone marrow is clean of cancer and if it is then by next week I will be having my stem cell transplant. We should get the results back tomorrow so keep on praying for me. Dr. Barbosa looked at my bone marrow and said he did not see any cancer but he can not be sure with that test. They will also send a sample to Califonia and they will actually test the bone as well and the results for that test will come back next week. My next appointment is next tuesday and they will go over what will happen next and what the stem cell transplant will consist of. So if all goes well I will not be able to go see the Backstreet Boys because they will be here on Feb. 24th and I will go in for my transplant as soon as next week. I don't know what to think about that (because my mom has not told me yet)
Keep praying for me and I'm sure my bone marrow will come back cancer free.
Thank you all for keeping me in your prayers and I want to give special thanks to GOD, and all my guardian angels.
I love you all!!! Taylor
Tuesday, February 01, 2000 at 08:44 AM (CST)
Hello,
I have been very busy the last few days,yesterday I had my finger poke at the Tampa clinic and my counts were very high so we were able to stop the shots every night (for now.) My surgery will be thusday so we have to be at the hospital early in the morning.
Sunday (after church) we went to Bryan's birthday party which was at Menard park (plant city area) and I had so much fun. They have these big hills that we climbed and sand that we played in, I took off my socks and filled them with sand, then we threw my socks around. I was pretty dirty by the end of the day. Then we came home and watched the superbowl.
Monday we even had to take Landon to the doctors because he just wasn't feeling to good, and the doctor said there was nothing wrong with him. He is getting in two more teeth so I guess that was the problem, we just wanted to be sure.
Today grandma is making some of her famous cinnamon rolls, I can't wait until there done.
Make sure you pray really, really hard on thursday during my surgery. I will try to update my page on Friday to let you all know how I did.
I Love You!!! Taylor
Thursday, January 27, 2000 at 03:31 PM (CST)
Hello,
I had my finger poke today at the Tampa clinic and found out that my platelets were low again so we had to drive over to St. Pete. It didn't take to long we were there for about 2 hours and Landon even behaved himself. We have been so busy today that me and Landon have not been fighting and my mom is so happy about that.
Yesterday I went to preschool for about an hour it was Sami's birthday so we went and had cake. Mom did not want to stay to long because most of the kids in school had been sick. Miss Harriet even read a book to the class that I picked out and it was about fish. Well Landon liked it so much that he stood right in front and did not want to sit down, he had to be close enough to see the pictures of the fish, (or to Landon their dish) He loved that book so much he took it right out of the teachers hand when she was done reading it and did not want to let it go. So the teacher said we could take it home and bring it back next week.
My surgery is scheduled for next thurday Feb. 3rd so If you could pray for me as much as you can that day.
Love Taylor
Friday, January 21, 2000 at 10:58 AM (CST)
Hello,
I had a pretty good week, Tuesday I was still a little tired but by Wednesday I had most of my energy back. I even went to my friend Jacquelines's birthday party at the park and had a good time, we had pizza, strawberry's and cake (I think I had a bite of each) I still have not been able to eat to much but I am trying.
Yesterday I had my appointment at the Tampa clinic at 10:00 a.m. and I was feeling so good, it was a surprise when they told us I needed blood and platelets. So we had to drive over to St. Pete to get my blood. It was close to 11:30 by the time we got there and we did not leave until 5:45, it was a very long day. It takes them a while to type and cross the blood and once the blood is ready it will take about 3 hours to infuse it and the platelets take about an hour. They have a room just for infusing and they have recliners and a tv & vcr, so we watched tv all day and I played with a barbie that we had to stop at toys-r-us and get on the way (because we had nothing packed to do) and of course the wonderful nurses even gave me a little jeep & Wagon that runs on batteries, and a little barbie that goes with it. Then me and mom were both hungry so we met dad and Landon at Sweet Tomatoes for dinner. We just had to be really careful because I am at what you call my "nadir" which means my ANC was at zero, so I am not able to fight off any infection right now.
Today me and Landon have been playing on the computer and fighting, (we do alot of that) and I have been snacking all morning I have been rather hungry.
Yesterday at the clinic I ran into my friend Christopher Becker (he also has neuroblastoma)he just turned 6 years old. They are flying to New York because they are running out of time, the chemo has not been doing what it is suppose to do and they have a reseach team there that has a different approach on things. So please say an extra prayer for him.
Thank You and have a great weekend!!!
GO BUCS, GO BUCS!!!!!!
Love Taylor
p.s. New Pictures
Monday, January 17, 2000 at 12:41 PM (CST)
Hello,
Well I finally got through my 5th round of chemo, I did get sick a few times,only once in the hospital. Once I got home is when I started to feel bad, I got sick on the way home (which was Wed. morning) then about 4 or 5 more times that day, but I was not eating much so I ended up with dry heaves. Then thursday I got sick only 2 times and then last night when I was brushing my teeth, I couldn't handle the toothpaste and I threw up. I am still not eating very much , I just have not been very hungry. I have been tired alot and have been taking naps, so my mom and dad thought that I would need blood today but my counts were not that low (close, but not low enough) so I will go back on Thursday to have my counts checked again.
We have not been going out much because we don't want to catch the flu that is going around, so the days can get to be rather lonely. We are all trying to stay healthly and strong so my sugery won't have to be postponed, I have two more weeks left.
My dad has been playing my Nintendo (Banjo Kazooie) he is getting to be really good. He discovers a new world everyday.He could play that for hours, at least it keeps him busy and we love to watch him play it.
Landon keeps us very busy too, the other day when mom wasn't looking he got the peanut butter jar out and decided to eat it with his hands, well by the time mom found out he was covered with peanut butter from head to toe. The things that boys will do!!
Thank you for thinking of me!!!
Love Taylor
Monday, January 10, 2000 at 10:37 AM (CST)
Hello,
I am still in the hospital getting my 5th round of chemo, and I am doing good. Saturday I was having a few problems, I was getting pains in my legs and it would hurt to stand up, but that did not last very long. Then saturday evening I got sick, but that didn't bother me much I still played some games after that. I have not been eating to much since then because everything smells really bad, I can't even look at my dinners. So I have to eat things that don't smell like, freeze pops and popcicles and plums.
Saturday we had a birthday party for my cousin Jason, so all my relatives came to the hospital. I was glad to see Jason again.
Then auntie Lisa spent the night with me and mom and dad both stayed at the Ronald McDonald house and then Sunday night my grandma spent the night with me. I think I will be in the hospital until Wednesday, this is a strong chemo so they will have to hydrate me for 12 hours after my chemo.
Surgery will be in about 3 weeks, the doctors told us that they are hoping that the tumor will losen up because it is wrapped around the adrinal gland and a few of the arteries, and one of the kidneys. They would be able to remove the adrinal gland and one of the kidneys but they would not be able to remove all of the tumor from the arteries, or I could bleed to death. So we can only pray that this chemo will shrink the tumor away from everything. The tumor on my head is almost gone they measured that at 1 cm x 2 cm and it started out at 7.6cm x 2.8 cm. The one in my abdomen started out at 6.5 cm x 6.5cm and that one has shrunk in size but it is not one solid mass, in is more like a spider and its legs are wrapped around everything.
This is a very strong chemo so lets hope that it works.
Love Taylor
Wednesday, January 05, 2000 at 10:47 PM (CST)
Happy New Year!!!
I went to the clinic today and my count were fine so I will be going into the hospital tomorrow. This will be the 5th round of chemo which is 5 days and it is the same as the first (a strong one) so keep your fingers crossed that I don't get sick again.
New years eve we had a little party at Barb and Karl's and I stayed up until 1:30 a.m.
We roasted marshmellows by the fire and went out on the dock at midnight and we could see fireworks from 4 or 5 different places.(We also had some fire works of our own) Wes and Tina flew in from Minnesota and got in just in time to bring in the new year with us. I had so much fun playing with all my cousins(Bryan,Matt,Kyle,Tanner,Parker,Dakota and Hunter)and of course my brother Landon, he even stayed up until 12:30 a.m.
Then new years day my dad took Wes and Tina fishing, and some friends of ours from Wisconsin came to visit(Pete, Cassie and Haylee) It was great to see them again.
Monday we took Wes and Tina to the beach (I think they got some sun) Wesley was trying to help me build a sand castle but Landon kept destroying it, (my brother likes to do things like that.) Then they had to leave monday evening to go back home, and I miss them already. I like it when we have company stay with us, I like to stay busy and my mom and dad just can't keep up with me.
Grandma and Grandpa Johnson came over tonight and we went to Sweet Tomatoes to eat, thats my favorite restaurant. They are going to watch Landon so mom and dad can be in the hospital with me. We packed alot of toys and my Nintendo games.
My bruises are starting to go away and last friday when we thought Landon was getting sick, we brought him to the doctor and his throat was red so they put him on an antibiotic and after a few doses he was back to himself again.
If any one would like to visit me or call me in the hospital I will be there until Tuesday, The number again is 800-456-4543 and I don't know the room number yet. Please don't feel like you are bothering us because with the longer stays we need things to keep us busy. I love you all!!!!
XXXXOOOOOO Taylor
Thursday, December 30, 1999 at 09:46 PM (CST)
Hello Everyone!
I had a great Christmas, santa gave me a pair of rollerblades, and I got a Nintendo 64 and 5 games to go with it(and a lot of other things) I have been so busy playing with my cousins and aunts and uncles,I did have to take some time out to go to the Tampa clinic to have my CBC's. Monday when I went my platelets were still low, so they decided that I would not be ready to go in for my chemo yet. Today when I had my counts checked my platelets did not go up much, monday they were at 34,000 and today they were at 35,000 and they need to be at least 75,000. So now I will not be going into the hospital until next Thursday, Jan. 6th. Thats ok with me because that gives me more time to visit with my Minnesota relatives. The only problem is my body is full of bruises because of my platelets being so low, they really don't hurt though.
We went to Lowry Park Zoo on Monday and we had a good time, Tuesday we drove to Barb and Karl's and spent the day,and that night we made a fire and toasted marshmellows.Yesterday and today we just played outside most of the day with my cousins, Parker,Dakota and Hunter (from Minnesota) We drove my Barbie Jeep alot and rollerbladed up and down the street.
My dad, Mike and Cindy, Karl, Mike and Parker all went deep sea fishing and they caught alot of fish, mostly grouper and some mangrove snapper. Tomorrow we are going to Sarasota to a festival, its going to be a great day. I hope my brother feels better (we will have to take him to the doctor) he is a little warm and just has not been feeling to good.
God has been listening to all of our prayers because he made it possible for us to have the best christmas ever.
GOD BLESS YOU ALL AND HAVE A HAPPY NEW YEAR!!!
Love Taylor and family
Thursday, December 23, 1999 at 03:38 PM (CST)
Merry Christmas!!!!!
We had my test done yesterday and the doctor said that I am showing a significant amout of change in my tumors. Which means that the chemo is working,We were very glad to hear that, and we just got a call from one of the nurses who handles the transplant cases and she said " Are you ready for this? Have a very merry christmas, THE TESTS CAME BACK CLEAN," This is the best news we have had in a long time. That means I will be ready for my transplant, because the cells that were collected were cancer free.
Yesterday when we went into the clinic I got a new baby doll, she looks so real. I named her Natalie. We were at the clinic and the hospital all day, I had to get blood and platlets and that takes about 4 hours. The CT scan and the bone scan, I had to lay very still, but I didn't mind at all, the nurses said that I did great. My favorate nurse in radiology (Whitney) bought me a darling little Calvin Klein dress and a purse with purple sparkle finger nail polish, a pink yo-yo and a tablet in the shape of a flower. I had a good day yesterday.
Karl,Kyle, and Tanner came up and stayed with Landon.
Tonight we have our dress rehersal for the christmas program (thats tomorrow night.) Then tomorrow Amy and Chad fly in from MN, and Grandma and Grandpa should be here tomorrow. Christmas day Mike, Lisa, Parker, Dakota, Hunter, Mike & Cindy fly in and they will be here until new years day.
I go back into the hospital on Dec. 30th for my 5th round of chemo and my surgery will be about the middle of Jan. My stem cell rescue(transplant) should be sometime in Feb. I hope I can wait until Feb. 24th because my mom got us tickets to the Back Street Boys. They are my favorite band, I love all their songs (they are cute too).
We want to wish everyone a MERRY CHRISTMAS!
LOVE, Jeff, Angie, Taylor & Landon
p.s. I have new pictures
Wednesday, December 15, 1999 at 09:29 PM (CST)
I got home Monday night at about 12:30 (I slept all the way home) my fourth round of chemo went good, I only got sick once. I went to craft class everyday, and friday night when mom and dad went to their christmas party Chris(Overby) stayed with me until auntie Lisa came and then she spent the night with me. As you all know my stem cell harvest went very well, but we are still waiting for all of the results to come back, they test everything to make sure that no cancer was in any of the cells and that nothing contaminated the bag. We have strong feelings that everything will be perfect, then we will have the best christmas ever.
I am going to be in the christmas program at chuch ( I'm going to be an angel) the service will be on Christmas eve night at 6:00 at The Lady of the Rosary Catholic Church. I am so excited I'm learning a new song that we are going to sing, and I got my angel costume today.
We have alot of christmas presents under the tree and I already know what one of them is(It's a puzzle,I shook it and I knew right away)And I told Santa that I would like rollerblades. Santa and Mrs. Claus came to visit all the kids at the hopital.
I went to preschool today and I made mom and dad a present(a candle with all different color pins that I poked into it.)
I had alot of fun, it was nice to see all my friends again.
On Wednesday Dec. 22 I will be having all the tests again, the CT scan of my head, pelvis and abdoman and the bone scan. So this will tell us how well the chemo is working and when they think I will have my surgery. (I think I have a guardian angel watching over me so maybe we will get a miracle for christmas.)
Love to you all, Taylor and family
P.S. Thank you to the Canton Firemen for all the money they raised, and to everyone who was there.
Friday, December 10, 1999 at 10:41 AM (CST)
I did my stem cell collection yesterday and it was a success, at first the doctors thought that maybe it was to late because my counts were so high but we got the results this morning. They said it was the highest stem cell collection that they have ever done. Thank You GOD!!!!! We were praying very hard. the procedure took about 4 hours and I was in a little pain, they put the catheter in my leg (in the groin area) and I couldn't move much so we watched some movies. I will start my fourth round of chemo today and will be here until sunday or monday. Mom and dad have a company christmas party tonight so now they can relax a little bit. So Barb,Karl, Kyle, Tanner and Landon are going to visit me while mom and dad are out.
Thank you for the prayers!!!!!
Love Taylor:)
Monday, December 06, 1999 at 03:12 PM (CST)
We did not get the news that we wanted to hear today, my counts are going back up but I dont have enough stem cell yet. They will try one more time (on thursday) and if that doesn't work I will be starting my fourth round of chemo on thursday. Then they will try to collect my stem cells again after my chemo, so everyone keep your fingers crossed. This round of chemo will last for four days.
I have been feeling much better, the sore on my tongue went away and I can eat again.
The pain I was feeling in my stomach even went away.
Saturday night my mom and dad even went out for a little bit (they had a christmas party to go to) and Barb, Lisa, Cathy, Kyle and Matt stayed with us. (They had to babysit Landon, I don't need a babysitter) We had alot of fun, then sunday we all went to our new church (it's very nice.)
We love you all, Taylor, Landon, Angie & Jeff
Friday, December 03, 1999 at 11:36 AM (CST)
I still have not had my stem cell harvest yet, we went to the hospital yesterday and when they checked my blood my counts were still to low. Now we will go back on Sunday and they are sure that I will be ready by then. I still have not been feeling to good, my stomach still hurts every once in a while and now I have a sore on my tongue so I can't eat much. I have lost a few pounds again, and I try to eat different things but everything hurts my tongue. We are all getting over our colds, I just have the sniffles. Landon went to stay with the Hagens, because we thought I would be in the hospital. So when we left the hospital we went shopping for a christmas tree, we got a 10 foot tree, (Its big) Landon is going to be surprised when he sees it. We decorated it last night and I was very tired (I fell asleep right under the tree)
I have been playing alot of games and my doctor said I can play with my friends more often (just as long as no one is sick) I like playing with my friends, I makes me feel better. I get to make a wish for the childrens dream fund and I just dont know yet what I want to do, any ideas? One thing I can do is spend 5 days and nights at Disney World.
I will talk to you all after my stem cell collection. Love Taylor
P.s. check out my new pictures
Friday, December 03, 1999 at 09:20 AM (CST)
Hi everyone!
I have not had my stem cell harvest yet because my counts are still to low, so now they think it will be on sunday. Landon went to stay with the Hagens because we thought we would be in the hospital. We are all getting over our colds, but I still have not been feeling to good. My stomach still hurts sometimes and I have a sore on my tongue so it hurts when I eat. I lost a few pounds again because I just don't want to eat much.
Yesterday we got our christmas tree and it is huge (about 10 feet tall). We were decorating the tree last night and I was so tired I fell asleep under the tree.
I love you all, Taylor
P.s. check out my new pictures
Friday, December 03, 1999 at 09:20 AM (CST)
Hi everyone!
I have not had my stem cell harvest yet because my counts are still to low, so now they think it will be on sunday. Landon went to stay with the Hagens because we thought we would be in the hospital. We are all getting over our colds, but I still have not been feeling to good. My stomach still hurts sometimes and I have a sore on my tongue so it hurts when I eat. I lost a few pounds again because I just don't want to eat much.
Yesterday we got our christmas tree and it is huge (about 10 feet tall). We were decorating the tree last night and I was so tired I fell asleep under the tree.
I love you all, Taylor
P.s. check out my new pictures
Friday, December 03, 1999 at 09:20 AM (CST)
Hi everyone!
I have not had my stem cell harvest yet because my counts are still to low, so now they think it will be on sunday. Landon went to stay with the Hagens because we thought we would be in the hospital. We are all getting over our colds, but I still have not been feeling to good. My stomach still hurts sometimes and I have a sore on my tongue so it hurts when I eat. I lost a few pounds again because I just don't want to eat much.
Yesterday we got our christmas tree and it is huge (about 10 feet tall). We were decorating the tree last night and I was so tired I fell asleep under the tree.
I love you all, Taylor
P.s. check out my new pictures
Monday, November 29, 1999 at 03:12 PM (CST)
Hi,
I am still at home, we have not had my stem cell harvest yet because my white blood count are still to low, I think it is because I caught my dads cold and so did mom and Landon. So hopefully my counts will go up and then they will take my stem cells Wednesday or thursday. Saturday I had to get blood and platlets,getting blood made me feel much better, but my stomach still hurts.
I sure miss playing with all my friends, that is the worst part about being sick. I always have to wait until my blood counts are high, I ask my mom and dad everyday if my counts are up. This time they have been low for to long and I am getting bored playing with Landon everyday. Mom and dad have to watch me pretty close because I have been running a low temp. and I just don't feel to good.
Love, Taylor
We would like to thank everyone in Minnesota for the continued support, and everyone who attended the benefit, it was a huge success and we would like to thank each and every person but,that would take to long. Thank God for our little home town of Mabel-Canton, Minnesota, we love you all. I know some of you were wondering just how much all of this will cost and we found out last week that the protocol that Taylor is on will be close to 2 million dollars.
Thanks again, Jeff, Angie, Taylor & Landon
Wednesday, November 24, 1999 at 02:09 PM (CST)
Happy Thanksgiving,
I had my doctors visit today and my counts are low so we will be staying home. We have to have my blood checked every day because they need to harvest my stem cells, so when the time is right we have to check into the hospital and they will put a catheter in my leg to withdraw blood which will be circulated through a machine to extract the stem cells and the remaining cells are put back in me. They want the stem cells because they can reproduce another cell identical to itself.
They need two bags full but would like to get three just for back up. So everyone wish me luck!!!
I feel great and me and Landon have been playing outside the weather has been beautiful. Dad even set up the tent in the back yard. The only bad thing is that my daddy is getting sick so we had to kick him out of the house until he is better, he was going to stay with Cathy & Steve. So tomorrow morning we will have to make a trip to the hospital then mom is going to cook us a chicken (it tastes the same as turkey) and we are going to play lots of games. Unless my counts are right then I will have my harvest done tomorrow, but I think it will be on Friday or saturday.
Happy Thanksgiving to everyone!!!
Lots of Love, Taylor & family
Wednesday, November 17, 1999 at 03:58 PM (CST)
Hello,
Well tomorrow I have to go back to the hopital for my third round of chemo, this one is only for three days so I should be home on sunday.
Yesterdy we went to the zoo and I had a great time, I got to feed the manatee and the otters, we had a personal tour and we learned all about the animals. (thanks Florence) Then we fed the birds and they even landed on my hat and on Landons head.
Then today I went to the park and seen all my preschool friends, I had a great time.
I will talk to you all when I get home from the hospital.
My family and I want to thank Bakkes Bar & Grill (BBG's) in Mabel,Minnesota for all the money that they raised, we love you all.
Thank You God for this Little Girl
Story time is over you nod your tired head
I rearrange the covers and tuck you down in bed
A kiss upon the forehead, prayers and "nighty night"
Moonlight bathes your face, oh what a lovely sight
The time we shared today,
The hassle and the fun
The questions and the laughter
In my mind now run
I marvel at your beauty
And wonder all the while
How you make me angry
And then just make me smile
Sweet and Lovely Angel
Dearest in the world
Thank you God for this blessing,
My precious Little Girl
Monday, November 15, 1999 at 10:54 AM (CST)
Hello,
I just got back from my clinic visit and my counts were so good that we will be starting my next round of chemo on thursday, I should get to go home on sunday. Then on Wednesday I will go back to the clinic and get another injection of chemo (they will do that from my mediport) that should only take a few minutes. So I will be home for thanksgiving.
My grandma Linda and Joe got here yesterday (from Minnesota) and today we are going to go to the park, then tomorrow we might go to the zoo.
My mom, dad and Landon are doing great. I have even been taking my medicine like a big girl now, and I don't even cry anymore when my mom has to give me my shot.
Love to you all, Taylor
Tuesday, November 09, 1999 at 08:50 PM (CST)
Hello,
I have been feeling great, and guess what I have gained back all the weight that I lost. I have not been feeling sick and I just want to eat all the time, my favorite things are nuts (pistachio,walnuts,brazils, pecans, and filberts) I love to sit down and crack them myself, and I love string cheese.
I went to the park today and played with some of my friends (Nicholas and Emily) We went to the doctor yesterday and my counts were still really high, we still have to be carefull though, I can't be around anyone who is sick. Every Monday and Thursday (when I am not in the hospital) we have to go to the All
Childrens clinic (in Tampa) and I have to have a finger poke, and that will let us know if my blood counts are high or low. I don't mind the finger pokes the one I hate is the shot my mom has to give me everyday, (gcs-f, that helps my white blood cells rebuild)
Then I have to take pills everyday and I hate that, they are nasty tasting.-- I just can't understand why I got this bump on my head.
I have been staying busy at home yesterday I glued leaves on some paper and today I found some acorns to glue. I painted and colored a few pictures and I have been playing my games on the computer.
I want to thank everyone for praying for me (I think that is why I feel so good)
Hugs and Kisses to you all!!!!
Love Taylor
Friday, November 05, 1999 at 03:56 PM (CST)
Hello, guess what, I am still feeling great and I will be going home tomorrow morning. Uncle Karl brought Landon to the hospital today so daddy could take him home so we can all be together again tomorrow. The nurse unhooked me today so I brought Landon to the outside playground, it was really nice. Then I went to craft class (thats everyday at 2:00 and 6:00) and this week I did not miss a single class. Today I made a pink piggy bank, and I'm ready to go to the next class at 6:00.
I better go, mom said that tomorrow when we get home we are going to put new pictures on my page,( One will be me in my strawberry costume)
I Love you all, Taylor
Wednesday, November 03, 1999 at 09:09 PM (CST)
Hello, My mom just read me all the messages that everyone has been leaving me from the guest book, I love to hear from eveybody. My mom found a lap top so she can read them to me every day now.
Well I have been feeling great, this was my third day of chemo and I have two more days to go, keep your fingers crossed that I don't get sick. The doctors say that I look great, I'm going to surprise them again when I walk out of this hospital--Cancer Free. (I surprised them when I first came in they couldn't believe I could even walk)
I have been going to the craft room everyday, I have made alot of things and I am going to give them for christmas presents. I also like to watch this Charlie Brown video that they have here and it is about a little girl named Janis and she has cancer too. Her hair falls out and then it grows back again, and she had all the test just like the ones I got. We have alot in common so I like to watch it. I asked my mom today why I have cancer, and maybe they made a mistake. We just don't know why? I thought that when I go home this time the cancer will be gone,because I have had alot of medicine, but I guess it might take a little longer.(I just can't figure this cancer stuff out.) My friend Nicholas came to visit me again, I had a great time, but I get a little sad when he has to leave.
I will talk to you all very soon, I should be home again on Saturday.
Lots of love to everyone!
Taylor
Sunday, October 31, 1999 at 09:54 PM (CST)
Hi Everyone! I had a great weekend, Saturday we went to a fall festival and I played games and rode on some rides, I went with two of my friends, Nicholas and Jessica. Then we all went to Sweet Tomatoes for lunch. I had so much fun I had to go home and nap for three and a half hours.
Today when we woke up we all got ready for church, (I wore a beautiful dress with a matching hat.) Then we had more friends come over to the house. I am feeling great I told my mom that I can go to school now because if I wear a hat no one can tell that I don't have any hair. (she said I would be tricking them) That made me feel much better. I am still trying to get use to how I look now, my hair is almost all gone.
We went trick or treating with Nicholas and Landon would not even wear his costume, I was a strawberry and mom even painted two strawberry's on my face. we went for about an hour then I had enough candy so we went home. Landon had fun he wanted to go in everyones house, especially the ones than had dogs. ( he's so silly)
Now I am ready to go to the hospital tomorrow, I have some toys packed and I have been eating really good, so I am strong again. Mom and Dad told me why I have to go back and I'm not to scared, I just hope that I don't get so sick from my chemo. I get to play the video games again, they have a Sega and a Nitendo, so I am excited about that.
That's all for now, Love Taylor
Friday, October 29, 1999 at 04:43 PM (CDT)
Hi everyone!! I got to go home today!! The doctor said I need to eat and drink alot so I can be strong for Monday. I have to go back to start my second round of chemotherapy. I am feeling really good and we have alot of things planned for this weekend, I even get to go trick-or-treating.
I am going to be a strawberry and Landon is going to be a blue M&M.
When I got home today I had to take Landon for a ride in my new barbie jeep.
Cathy and Matt came over so I have been busy playing. I have been getting alot of pretty new hats and I love them all, mom told me when I go out in the sun that it is best to wear a hat (I have to protect my head)
Auntie Lisa went home today she had to go home and rest because she has been taking care of my brother Landon, and he is a pretty busy boy.
Thanks for all my gifts and prayers!!!
I dont know what room I will have on monday so you will have to ask for Taylor.
I Love You All, Taylor & Family
Tuesday, October 26, 1999 at 02:27 PM (CDT)
Today October 25, was a great day because it was my daddy's birthday. I feel much better today and the doctor said that I might be able to start drinking tomorrow. I went to the outside playroom with Tracy and mommy today. My favorite friend Whitney(from Radiology) came to visit today and she gave me a chicken beanie. Auntie Tracy from Minnesota is here to visit. We went to the playroom today and I had alot of fun, we even played video games.
On Tuesday, October 26, I feel better than yesterday. The doctors told me that I can drink water, juice and I can also have popsicles. I am only on one antibiotic, instead of 3 . I had a great day today. I went to craft class at 2pm and made Halloween mask and banner, then I went to crafts at 6pm and made hand puppets. Auntie Tracy is still visiting today. P.S. I am not sure when they will start my second round of chemotherapy.
I LOVE ALL OF YOU, Taylor
Sunday, October 24, 1999 at 10:29 AM (CDT)
Our little Taylor-"Tastey Cakes"
On our 10th anniversary , September 16, 1999, we went on a family outing to Busch Gardens. That evening we noticed a bump on Taylor's head. We questioned her and she told us that she did not bump her head and that it did not hurt. We called the pediatrician and we were told to watch her pupils or if she becomes sick. After a sleepless night we took Taylor to her doctor and he told us that "it looks like hematoma and she must have bumped her head" but he ordered an x-ray. After 2 hours the doctor told us that it was hematoma and that it should go down in one week.
Throughout the next week we did not notice any change in the bump. After several phone calls to Taylor's doctor he agreed to send us to a specialist. They made an appointment for the end of October, however, we did not agree to wait this long. We called to demand a CT scan, so they made the appointment for October 11. We still did not want to wait so Jeffrey called All Childrens Hospital in St Pete and they took us the next day, October 1.
Our appt was scheduled for 1:30 pm and we thought that they were going to tell us the same thing as the pediatrician, "The blood had calciumized and that it would have to be drained." As we waited for the CT scan results we could tell something was wrong when the room started filling up with doctors and the hospital chaplain. They told us that it was a tumor and that they would have to run more tests. After more tests we were told it was "Neuroblastoma" - a common, aggressive, early childhood, malignant cancer that effects the immature nerve cells. It is the third most common childhood cancer. They sent us home for the weekend, but we would be back at the hospital on Monday morning.
This could not be happening to our little girl, who was never sick. Now they are telling us that she has cancer. Taylor was our active, normal 4 year old. Our family and friends shared the weekend with us.
Taylor was admitted to All Childrens Hospital in St Petersburg, Florida, on Monday October 4, 1999. This hospital has a well known protocol for treating Neuroblastoma.
On October 6, Taylor started her first 5-day chemotherapy treatment cycle. Taylor had no appetite and was sick and nauseous, which are common side effects of chemotherapy.
On Monday, October 11, they inserted a feeding tube through her nose, because Taylor was not eating and she needed to eat to go home. Throughout to past week we learned more about Neuroblastoma, chemotherapy drugs/side effects , and how to care for Taylor when we go home. We learned how to give Taylor shots in the leg which will have to be done everyday at home between our hospital stays. This shot is to help Taylor re-build her blood.
On October 12, Taylor was released to go home. We stopped at the St Pete Aquarium on the way home, which Taylor enjoyed. The feeding tube did not last long, because she coughed and it came out. Taylor's mood improved and she started to eat and drink. Taylor enjoyed that afternoon riding in her new Barbie Jeep with Landon.( This was a gift from her relatives in Minnesota)
Even though Taylor was eating and drinking she could not keep anything down. On Friday, October 15, we had an appointment at the hospital and they said everything was going as expected. That night Taylor started to run a fever and we were told that if it reached 101 degrees we needed to take her to the hospital. If the fever is at 101 or above they need to start antibiotics within two hours to fight any infections.
On Saturday, October 16, she had a fever and was weak, so we rushed her to the hospital and they started her on IV's.
On Sunday, October 17, she started to get stomach pains, so the doctor ordered "Nothing by mouth" and they took more x-rays to find the problem.
On Monday, October 18, an ultrasound was given. They found out the pain was from an infection in her intestines called Typhilitis. Throughout the week Taylor was given medication to fight the infections and because her white blood count was low no visitors were allowed.Taylor's hair is slowly falling out (side effect of chemotherapy), but we have been cleaning it off her pillow everyday to save it.
On Saturday, October 23- Taylor has not had a fever for 48 hours, but she still complains of stomach pains. She took a bath today and went to the playroom for an hour to paint a frog. Her white blood cell count is up to a safe level, her red blood cell and platelets are still low. Her visitors today were Barbara, Lisa, Cathy and of course, her little brother, Landon.
We would like to thank everyone for your continued prayers, thoughts, phone calls, e-mails, cards and gifts. We will keep you posted on Taylor's progress.
P.S. Please sign the guestbook
.
Sunday, October 24, 1999 at 10:29 AM (CDT)
Our little Taylor-"Tastey Cakes"
On our 10th anniversary , September 16, 1999, we went on a family outing to Busch Gardens. That evening we noticed a bump on Taylor's head. We questioned her and she told us that she did not bump her head and that it did not hurt. We called the pediatrician and we were told to watch her pupils or if she becomes sick. After a sleepless night we took Taylor to her doctor and he told us that "it looks like hematoma and she must have bumped her head" but he ordered an x-ray. After 2 hours the doctor told us that it was hematoma and that it should go down in one week.
Throughout the next week we did not notice any change in the bump. After several phone calls to Taylor's doctor he agreed to send us to a specialist. They made an appointment for the end of October, however, we did not agree to wait this long. We called to demand a CT scan, so they made the appointment for October 11. We still did not want to wait so Jeffrey called All Childrens Hospital in St Pete and they took us the next day, October 1.
Our appt was scheduled for 1:30 pm and we thought that they were going to tell us the same thing as the pediatrician, "The blood had calciumized and that it would have to be drained." As we waited for the CT scan results we could tell something was wrong when the room started filling up with doctors and the hospital chaplain. They told us that it was a tumor and that they would have to run more tests. After more tests we were told it was "Neuroblastoma" - a common, aggressive, early childhood, malignant cancer that effects the immature nerve cells. It is the third most common childhood cancer. They sent us home for the weekend, but we would be back at the hospital on Monday morning.
This could not be happening to our little girl, who was never sick. Now they are telling us that she has cancer. Taylor was our active, normal 4 year old. Our family and friends shared the weekend with us.
Taylor was admitted to All Childrens Hospital in St Petersburg, Florida, on Monday October 4, 1999. This hospital has a well known protocol for treating Neuroblastoma.
On October 6, Taylor started her first 5-day chemotherapy treatment cycle. Taylor had no appetite and was sick and nauseous, which are common side effects of chemotherapy.
On Monday, October 11, they inserted a feeding tube through her nose, because Taylor was not eating and she needed to eat to go home. Throughout to past week we learned more about Neuroblastoma, chemotherapy drugs/side effects , and how to care for Taylor when we go home. We learned how to give Taylor shots in the leg which will have to be done everyday at home between our hospital stays. This shot is to help Taylor re-build her blood.
On October 12, Taylor was released to go home. We stopped at the St Pete Aquarium on the way home, which Taylor enjoyed. The feeding tube did not last long, because she coughed and it came out. Taylor's mood improved and she started to eat and drink. Taylor enjoyed that afternoon riding in her new Barbie Jeep with Landon.( This was a gift from her relatives in Minnesota)
Even though Taylor was eating and drinking she could not keep anything down. On Friday, October 15, we had an appointment at the hospital and they said everything was going as expected. That night Taylor started to run a fever and we were told that if it reached 101 degrees we needed to take her to the hospital. If the fever is at 101 or above they need to start antibiotics within two hours to fight any infections.
On Saturday, October 16, she had a fever and was weak, so we rushed her to the hospital and they started her on IV's.
On Sunday, October 17, she started to get stomach pains, so the doctor ordered "Nothing by mouth" and they took more x-rays to find the problem.
On Monday, October 18, an ultrasound was given. They found out the pain was from an infection in her intestines called Typhilitis. Throughout the week Taylor was given medication to fight the infections and because her white blood count was low no visitors were allowed.Taylor's hair is slowly falling out (side effect of chemotherapy), but we have been cleaning it off her pillow everyday to save it.
On Saturday, October 23- Taylor has not had a fever for 48 hours, but she still complains of stomach pains. She took a bath today and went to the playroom for an hour to paint a frog. Her white blood cell count is up to a safe level, her red blood cell and platelets are still low. Her visitors today were Barbara, Lisa, Cathy and of course, her little brother, Landon.
We would like to thank everyone for your continued prayers, thoughts, phone calls, e-mails, cards and gifts. We will keep you posted on Taylor's progress.
P.S. Please sign the guestbook
.
Thursday, October 21, 1999 at 03:56 PM (CDT)
Taylor had to go back into the hospital on Saturday Oct. 16th. we could not control the vomiting and she was starting to get dehydrated, and she was running a low fever. By Monday morning she was in excruciating pain in her stomach, so they took some xrays and a sonogram and found out she has an infection called Typhilitis which is right about where the small and the lg intestines meet. And it was very swollen, so they ordered nothing by mouth and she is on 3 different antibiotics. They put Taylor on morphine for the pain , so she has been sleeping alot(which is good) Her White blood counts came up a little today, so we were glad about that because that is what is needed to fight her infection. Today they put a tube in her nose that will go to her stomach and will suck anything like stomach acid and bile out. It has been hard for Taylor because she can not understand why she can not have anything to drink.
Her fever still comes and goes but now it has not been getting as high as it was.
Taylors hair is slowly starting to come out, I have been cleaning it off of her pillow everyday.(I am going to save it)
I don't have any pictures right now but check back, I will get them on soon!!
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