May 16, 2005
Hello there!
It's been a while since I've written any kind of update on our families so I thought I would. We hope that all of you are doing well. Your support and kindness continue to amaze and comfort us. Thank you for being such good friends.
Relay for Life was Friday night. Kudos to the Enterprise Teams for another successful year. They had a great booth and worked so hard. It was a bittersweet evening for me. I remember very well two years ago when we had just returned from Washington DC and attended Relay for Life at Darling Stadium. Taylor was with us and had just finished up her first round of radiation and chemotherapy treatments. She was excited to be there and did the Survivor Lap with her Daddy. When it came time to light the luminaries, she helped to light the ones with her name on them. As the lights were turned off in the stadium and we sat with her amidst the glow of all of those candles, I remember praying that she would be able to do this with us every year. She died just a few weeks before last year's event.
We lit the luminaries last year and again this year without her. Now as we light them, we do so in loving memory of this little girl who gave so much and asked for so little. I am not the same person I used to be. None of us in her family are. We feel her loss everyday. It's a gaping hole in our lives that cannot be filled. We stay busy working and doing other things but that pain is always there and will always be there.
Keith and Paula are staying busy. Keith is still with Howmet and Paula is still at Enterprise. John is still working two jobs and hopefully will be giving one up soon. I am a Realtor with Abbitt Realty. I have been there since mid-January and I love it. I get to work with the most wonderful people. It has been very rewarding to help others with the purchase or sale of their home. I have also joined Kiwanis and have found that to be very rewarding as well. It is an organization dedicated to helping children. They help to support the organizations that helped us so much when Taylor was sick. EdMarc, CHKD, Ronald McDonald House and Make-a-Wish just to name a few. I have met the most amazing people there and have found it very therapeutic to give something back.
As far as the Grandparents, the loss they feel is two-fold. They mourn the loss of their sweet Granddaughter but they also hurt because we, their children, hurt so much. Our siblings and their children hurt as well. On my side of the family, my nieces are too young to remember Taylor. My nephew remembers her but only after she got sick. We always tell Taylor stories so they will grow up knowing who Taylor was. As my sister-in-law used to tell Taylor, "You are the best big cousin ever!"
Everyday remains a challenge. I pray for peace and comfort for myself and others that are hurting. I pray for the families who have lost children and for the families who have sick children. I ask God for so many things some days that I feel guilty. But I thank him too. Always. I thank him for my wonderful friends and family, my amazing, supportive husband and my sweet, funny, incredible and awesome little girl, Taylor, who will live in my heart forever.
Well, I guess that's all for now. Please leave us a note on Taylor's Dreambook letting us know you were here. I look at it everyday and it helps so much. Thank you again for your continued love and support. It helps more than you will ever know.
God bless all of you,
Amy
March 7, 2005
Well, it's been a little over four months since I have updated the website. I have changed the home page many times but I haven't posted any new news. Ashley Turner has been "bugging me" (I say that very kindly) but I wasn't sure that anyone was even checking anymore but here goes...
It has been ten and a half months since Taylor died. Not much has changed so I haven't really felt the need to update. We are all still doing pretty much the same thing. Keith is still working at Howmet, Paula is still working at Enterprise. John is still working two jobs -- at the airport and at the hospital on Langley AFB and I have now gone into Real Estate full-time!! I am working for Abbitt Realty and let me just say that if I can help you or someone you know with buying or selling a house, I would love too!!!
As for our feelings, they haven't changed. We are still filled with faith and hope and know that one day we will be with Taylor again. But as far as living this life out and being without her, it is hard. We take comfort in each other and the other wonderful things God has provided in our lives, but it is still very sad and difficult on most days because no matter what our future holds, we miss her today. Our lives just are not the same without our little ray of sunshine.
I am helping with a fundraiser that I have posted on the home page of Taylor's website, St. Baldrick's Day. I hope that each of you can help in your own way to contribute to this worthy cause. It truly is a wonderful organization that contributes 90% of their donations to childhood cancer research-- no funny stuff, it goes directly to one of the organizations that helped Taylor out -- The Children's Oncology Group. Please give whatever you can, it will truly be appreciated.
I hope that all of you are doing well. We haven't heard from too many of you lately and we miss that. If you wouldn't mind leaving a short message on Taylor's Dream Book, we are still checking and it makes us feel so good to know that others are still visiting her site. Take care, God bless and we hope to hear from you soon!
Love,
Amy
October 28, 2004
Well, I haven't posted since the concert but I would like to say it was Awesome! What a great band! The music was wonderful and they really looked as if they were enjoying it as much as we were! They even dedicated a song to Taylor and our family! The song was "In Loving Memory" and if you haven't heard it yet, it's beautiful. From what I understand , there is a reference in there to Taylor. We were honored that Mark was inspired by her and remembered her in that way. We were also fortunate enough to see him and thank him for all that he did for Taylor and for us. We also wished him the very best with his new band.
This is going to be a hard time of year for us. Everyday is hard but when certain holidays come around, it's even harder. Saturday will be six months since Taylor died. Sunday is Halloween and next Wednesday, November 3, would have been her eleventh birthday. Since her very first birthday, we have always thrown a big bash! Some years we tied it into Halloween and had costume parties. When she was little, we had Winnie the Pooh come and Pocahontas came one year! It was always a lot of fun with friends and family! I'm not sure how we will observe it this year. I am sure that it will be special though.
Everything is still pretty much the same as last time. Still working, still sad. I guess one of the hardest things is trying to figure out what you do next. It's hard not being a "practicing parent" anymore. I will always be a parent, always be her mom but I've been placed on "inactive status" now. Needless to say, it's rocked our world. But, we still have the love and support of so many. Our family, our friends and this website that continues to touch others. So, we make the best of it and just go on.
Thank you for continuing to care and check in on us. It helps so much to know that others are checking the website still. From the counter on the homepage, it appears that about a hundred or so people are still checking it daily. I hadn't paid that much attention to those numbers but I was amazed when I saw that. Some days I just figured that I was the only one still looking at it. It's kind of my own little Taylor shrine. So, as long as you are still checking, I'll keep posting. Maybe not as often as I should but trust me, there's really nothing that interesting to report right now. I do have some other poems and pictures that I would like to post and I'm still trying to learn how to post a slideshow because I made a great one with the Make-a-Wish pictures from our trip in August 2003. Better late than never though, right?
Well, once again, I have rambled on and on. Thanks for listening (reading).
Love and God bless,
Amy
October 12, 2004
Alter Bridge is coming to town! They will be at The Norva on Wednesday, October 13. The show starts at 7:30 p.m. and tickets will be available at the door. Sorry for the short notice but we hope to see some of you out there!
As for the rest of the update, not much has changed from the last time I posted. That's why I haven't posted anything new. We are all still working, still sad and still miss her. We try to stay busy with other things and some days that really helps. We miss all of you and are trying to organize a get-together soon so please keep checking back. I'm still working on the details!
Thank you again to those of you who still post. I still check. I come here often and am comforted by all of the kind words. Sometimes I just look at the pictures and listen to the music and think about all that happened to Taylor. Then I think about her life, short as it was, and I think about all of the fun that we had and all of the neat things that we did and it helps. Everything wasn't always picture perfect but we were happy and we loved each other and it just doesn't get any better than that.
Love,
Amy
August 10, 2004
Hello!
I just wanted to let everyone know that Mark Tremonti, formerly of Creed, is in a new band called Alter Bridge. Their debut CD was released today and is called "One Day Remains". I will be getting mine today and I urge everyone to support him in his new endeavor. He was able to give so much to Taylor while she was sick and helped make her so happy. He is truly a wonderful person and I say we help his new album go Platinum!!! Also, from what I understand, she and Keith are mentioned in Mark's thank you's.
Take care!
Love,
Amy
July 30, 2004
Hello all!
Well, it has been quite a while since I posted an update. I know that this site is not getting the traffic that it once did but that there still are a few "regulars" coming by to check in so I thought that I would post something.
First of all, thank you to all of you who still post messages to us. You all have helped us so much through all of this and it is a way for us to still feel connected. I read the site and come by on a daily basis. I guess it helps me to still feel "in touch" with Taylor and her life. We miss her so much. It was so much easier at the beginning (or ending) however, you want to put it. When she first passed away, there was so much to do. Now, life has gone on and we are left to try to piece together some semblance of a "normal" life without our daughter and favorite person present. Thankfully, we still have each other and our faith ever present to help us cope. I have some pictures to post and other things to add, so please keep stopping by to check in and hopefully I will have those up soon.
Life has gone on. I can only speak for myself but I feel as though I echo the thoughts of others when I say that we ache and long for Taylor. I was telling someone the other day that even though she was my daughter and I loved being her mother, I really loved her as a person. She changed my life in so many ways even before she got sick. I miss her terribly. I miss her laugh, her smile and her words of wisdom...trust me, she had many!!!
Keith is still employed with Howmet but has been changed to third shift. There were some layoffs but he managed to keep his job. Paula is still with Enterprise and thankfully reconciling all of Taylor's medical bills. I don't know how she keeps it all straight. John is still working two jobs for the time being. He is very tired but wants to get our finances straight again so for the time being, he will continue with that. I have started a new job as an assistant with Teagle Realty in Newport News. I am in the process of getting my Real Estate license so I may better assist the agents. No selling for me though! I'll be strictly back-up!
As for the rest of our family, they too are trying to pick up and go on with their lives. We all feel such a great void without Taylor here. We thank God everyday that he let us have her even if it was for only ten years. She touched our lives in so many ways and continues to touch us everyday. We tell Taylor stories and just laugh at how full of life she once was! Thank you to all of you who have shared your stories with us. They help so much. I printed a poem on the back of some cards that we sent out that I would like to share with you.
A Love Song
The mention of my child’s name
may bring tears to my eyes
but it never fails to bring
music to my ears
If you really are my friend
please, don’t keep me
from hearing the beautiful music
It soothes my broken heart
and fills my soul with love
Please remember that not only about Taylor but about anyone who has lost someone close to them. I know sometimes you don't know the right words or what to say, but don't feel as though you will upset us by talking about her. We hurt whether you do or not. It helps to talk about her and know that she touched your life too. Thank you again for all of the continued prayers and kind messages. You will never know how much you have helped us to get through this.
Love and God bless,
Amy
May 7, 2004
Cards can be sent to:
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Amy
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Keith
& Paula Adkins |
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arrangement details
Today, at
Today was a very special day and was spent in the company of
many loved ones.
To all of you who have helped us through this journey, we thank
you. To all of you who were there today to help us, we thank you.
I know what all of you are thinking and we want you to know that
we are fine. We have been blessed with so many gifts from God. The most
important one was
We love all of you and wish you the comfort and peace that we
have. Trust in your faith and trust in God. If you believe that there is a place
called Heaven and it's as wonderful as they say that it is, then do not be sad
that she is there.
She deserves the best and she got it.
God bless all of us,
Amy
Taylor’s stats are the same in the 80’s , heart rate is in the
30’s – 40’s.
Please keep the prayers coming.
There has been no real change in her condition today.
I talked with Amy tonight and
Once again the family wishes to thank everyone for all the
prayers, calls and support.
This is one tough kid.
Hello everyone!
Just wanted to send a quick note to let
all of you know that
We are all still hanging in there and
praying for her all of the time. Thank you to all of you who are doing the
same. We would also like to thank everyone again for the wonderful support that
we continue to receive. To those of you who we don't get a chance to call as
often as we would like, we are sorry. We spend most of our time taking turns to
be with
Love,
Amy
Taylor is still fighting
the battle, but her sweet little body is tired. When I spoke with Paula
this morning she said that they believed that
I spent last
night at the hospital with the family. The grandmothers were
telling
Please continue to pray for peace and comfort for
God Bless,
Mary Capone
Happy Easter!
I am home for the first time since my last update last Sunday and I have spent the last half hour reading the posts on the Dreambook and crying. God has shown us His awesome power and love so many times but it never fails to move me. I was telling Taylor's nurse today how awesome this whole experience has been. Not awesome like "Cool dude!" but awesome like awe-inspiring. To see God's hand move through so many people has been a life altering experience. I believe that all of us that have been connected through this would agree that you don't get to experience something like this that often. And to those of us that question our faith throughout tough times, God shows us the way. He is here, with all of us and His love for us is displayed through the kind acts and deeds of others. I thank God everyday for Taylor and for all of you who have supported us along this difficult road. So, once again, I thank you from the bottom of my breaking heart for all that you do for us everyday. We couldn't make it without you.
So, the big question now is, "How is Taylor?". Well, she has had better days. This last week has been very challenging for her. The cause? We are not sure but we do have our ideas. I will not take up your time by trying to explain them. Let me suffice it by saying that we are trying to do what we can to continue to ensure her comfort. Sometimes our ideas and the doctor's ideas are not simpatico but we are trying to do what we feel is right for Taylor. Throughout this journey we have made decisions based on prayer and sometimes our "gut" feeling. We feel that we have always made the right decisions and it is difficult sometimes when others don't agree with us. Have we always been right? That I cannot answer. Have we always made Taylor our number one priority? Yes. Will we continue to do that and not listen when they tell us that this is it, make her comfortable, there is nothing else that can be done? Yes, we will. Because we have seen God's power and we know what it can do. Are we religious fanatics who cannot see when enough is enough and let destiny have it's way? No. We are a family who loves this kid more than you will ever know. We have also seen the power of faith and prayer. Will all of this save Taylor's life and let her live to be a hundred years old? Probably not. Will all of this get us to a place where we can peacefully let her pass to a better place? I hope so. We are not ready to give up this fight for Taylor. I can assure all of you that when the time is right, we will do just that and let her peacefully pass on to a better place. Am I still holding out for a miracle? You bet your sweet heart that I am. Will I get it? I don't know. But, we will continue to pray and thank God for all that He's done, all that He's doing and all that He will continue to do for our special little girl named Taylor. I ask that all of you continue your prayers as well. We all thank you.
God bless,
Amy
4/11/04
Taylor is having a difficult time, her stats are up and down. Please remember to keep her and her family in your prayers.
4/8/04
Everything seems to be same.
4/5/04
Hello all!
Well, this week has gone much better than we expected. Taylor has been pretty alert but is still fighting a fever. It has been over a week now and they have cultured her blood, stool and urine. So far nothing has come up. Today the docs decided to tap her shunt to get a sample of cerebral spinal fluid so they could culture that. The neurosurgeon was called in and he was able to get enough of a sample to do a gram stain (? not quite sure what that is) and a culture. The gram stain results will be in this afternoon and the culture will be watched over the next few days to see if anything grows. They are not sure of the cause of the fever and have been treating her with several antibiotics. We will just watch and pray over the next few days that they will be able to pinpoint the cause and be able to treat it effectively.
Taylor's spirits are still pretty good. She is very responsive at times and also very, how shall I say this....spunky! God bless her, she is tugging at everything! We actually have to restrain her left hand most of the time because she tugs at her breathing tube, her leads, her central line, her feeding tube! The breathing tube and feeding tube are held in by tape and there is a small cuff in her throat that they inflate to help seal off her airway. If she pulls the breathing tube out, not only will it hurt but she will not be able to breathe. We have cautioned her many times but as many of you know, kids are kids and Taylor is Taylor! She doesn't care, she just wants it out. Even though it is uncomfortable, she doesn't get frustrated or sad, just spunky! She pulled her feeding tube completely out yesterday and her hand was restrained. We will have to start calling her Houdini!
We are still taking this day by day and asking God to help guide us and show us the best way to care for Taylor. Even though it is very sad that she has been on a ventilator for two weeks and one day now, she still is all there mentally. That is what makes this so much harder. But, she is not in pain and does not appear to be uncomfortable. She is very thirsty and hungry. It has been over two weeks since she has had anything to eat or drink. We can moisten her lips and wipe out her mouth with these special sponges that they have but it doesn't compare with being able to swallow. We tried playing with a ball and Playdoh to occupy her hand but she just tries to stick it in her mouth! Her way of saying, "I'm starving!" She is being fed through the feeding tube but it is liquid nutrition only. But as I said before, she is still hanging in there and seems to be the same old Taylor. I miss her voice and can only imagine what she has to say about all of this. I know that it is difficult for her not being able to speak.
Thank you again for all of the wonderful messages, phone calls, gifts and prayers! We love you all and can't thank you enough. Please continue to remember Taylor in your prayers. I was speaking with her nurse last night and said that through all of this, Taylor has done so many wonderful things for so many people but it has all been at her expense. I wish that there was a way for me to thank her for all of that. I know that God has wonderful things for us after we leave this world but I can't help but pray that Taylor will get some of her reward here in this world and get it soon. She deserves it after all that she has been through. That may sound selfish but I am her mom and we are allowed to think those things about our kids, right? So, I'll keep praying for that. Gotta run and finish laundry and paying bills. Thank you again and God bless all of us!
Love,
Amy
4/1/04
Hello!
I just wanted to send a quick note saying that
Love,
Amy
"For where two or three come together in my name, I am
there with them."
Matthew 20
Hello!
I would like to start off by thanking everyone for their prayers and concern for all of us. I know I sound like a broken record because I keep saying the same thing but we appreciate your love, concern and prayers more than any of you will ever know. We all have been through a lot over the past 15 months and we couldn't have gotten this far without you. So, from the bottom of all of our hearts, thank you.
I am not sure what to write about
Love,
Amy
Things are still about the same.
I talked with grandma Jean earlier this evening and there is not much change.
I need to start off by asking you to please forgive me if I don't always get all of the terminology right, when talking with the family there are times afterwards I question what I heard.
I talked with Amy earlier this evening and Amy said that she did speak with the Dr. from Duke and he knew right away what was going on with her lungs. ARDS (Acute Respiratory Distress Syndrome). It is something that he has seen happen before with cancer patients. He said that the best thing for them to do is to keep her as comfortable as possible.
The family asked once again to express their
gratitude for all everyone has done. It really has made a
difference. All of
There is not a lot of change today. Her lungs are still inflamed and the doctors are referring to it as a lung disease. They have doubled her antibiotics and have upped her steroids. Amy was suppose to talk with the Dr. from Duke sometime today. They have been keeping her sedated.
I have thought all day
about how to say what Amy wanted me to relay to everyone. I have had no
luck coming up with the right words. If you don't already know, each and
everyone of you have made a difference in
Taylor is still on the vent and it is pumping at 100%,but her lungs are not working as they should. Her parents have asked the doctors and nurses to make her as comfortable as they can, but have asked that no heroic measures be taken. She has fought so hard for so long and has been such an inspiration to all of us. The doctors have not been able to give the family any answers as to why or what is really taking place. They have moved her to a private room in PICU so that more of her family can be with her at the same time.
Please keep the prayers coming, they need the strength and wisdom and support.
Mary Capone
As many of you know,
We have seen the miracles that come from prayer, and now we need to pray for comfort and courage and understanding.
Well, the
last few days have been very frustrating. For the doctors, us and Taylor. They
still don't know what is going on. They ran a bunch of tests yesterday and we
should begin hearing results back today or tomorrow. They are really grasping
at straws now to find out why her lungs are so sick. She is requiring a lot of
support from the ventilator still and they are concerned with that. She is kind
of in and out all day (sedated) but sleeps (is heavily sedated) at night.
She is uncomfortable when she's awake because of the breathing tube. We
have asked them to keep her as comfortable as possible even if it requires more
sedation. I couldn't imagine spending an entire day awake, having a tube stuck
down your throat and not being able to talk. I talked to her the other night
because I needed to know how she felt about what was going on. She can nod or
shake her head to answer questions. I asked her if she was tired and she
nodded. I told her that she had been through so much over the last 15 months
and she again nodded. I asked her if she wanted to keep fighting this thing and
she nodded again. I told her that we would and just to hang in there. What else
is there to do? We pray all day for God to give
Thank you.
Love,
Amy
Hello everyone!
Thank you to all who joined with us in prayer last night at
The doctors are still not sure what is going on. They are kind of thinking that
her body was just really stressed out and working hard and then along came Mr.
UTI to upset the whole apple cart! They think that her body just said,
"Hey wait a minute, how much do you think I can do? You need to pick
something. Do you want me to breath, keep the heart beating or fight this
infection?" Right now she is getting much needed rest, antibiotics and
good nutrition to help her feel better. We are still seeking answers to all of
the other questions and hopefully we can find the answers and help her along
with what she needs.
We are all doing fine and have everything that we need. All that we ask is to
please keep the special prayers coming for
Thank you again to everyone for your love and support. We feel blessed to know
so many wonderful people!
God bless us all!
Amy
Thanks for all who took
the time to say a special prayer for
A Special request:
We
have a special prayer request for tonight. Please join all of us in
prayer at
We have all seen what the power of prayer can do.
Just got off the phone w/ Amy and the Doctors are not sure what is going on. Where as yesterday they had a positive attitude today they have no ideas. They are still trying to get rid of the excess fluid. She is still sedated and the vent is doing all the work for her. Keep sending those prayers.
Just received a message
from Amy,
What is going on with
The family wanted me to let you know how much all of you mean to them. Thanks for the prayers and please keep them coming.
Taylor has been moved to the PICU at CHKD. She is struggling to get her breath. They have not put her on the vent as of yet. They are using a mask to force air into her lungs. At this time one lung is collapsed. She has been so strong for so long, please keep the prayers coming, she needs them as much if not more than she did when all of this first begun over a year ago. Continue to check back for updates.
3/20/04
Taylor is in need of a lot more prayers!!!!!!!!
I have just gotten off the phone with her grandmother Jean, Taylor is having a real struggle with breathing. They are talking about putting her back on the vent. Please send out some extra prayers for her and her family today. Pass this information on. Check back often for updates.
3/20/04
Taylor was admitted to CHKD late Thursday night. She has pneumonia and an infection. I spoke with grandma Jean this morning before she went back to the hospital and she said Taylor had a fitful night. Check back for updates.
3/11/04
Good News!!!!!!
Preliminary results from the MRI today show that the tumor is smaller in size. Taylor is doing well and hopes to be home this afternoon.
They will be sending the MRI to Duke by overnight mail and hope to hear from the Dr. tomorrow.
Check back later for more information.
The miracle of Prayer!
3/10/04
Just wanted to send a quick update saying that Taylor's MRI will be tomorrow, Thursday, March 11, at 9:00am. We will take her there at 7:00am. It will probably take a few hours and chances are that we won't hear anything back until Friday or Monday. As soon as I know something, I will send an update. We have a feeling that it will be stable with no new growth but we have been thrown curve balls before so we don't get our hopes up beforehand anymore. Please say a special prayer for Taylor. Thank you!
Love,
Amy
3/1/04
Hello there!
I am extremely happy to report that Taylor has been completely off of the evil steroid, Decadron, for six days now! WOOOOHOOOOO!!!!!! This is quite an accomplishment and we are seeing positive things as a result. She has had a cold for about a week now but other than that has been feeling really well. Her mind (and wit) have been really sharp lately. Even her handwriting has improved. She unscramble words the other day and solved some math problems and I haven't seen her handwriting, mind and sight work that well together for quite a while now. She does have trouble remembering what day it is but we believe that is an orientation thing because her days all seem pretty much the same. We are trying to get her out of the house more. Her back seems to have healed nicely. She doesn't have any pain there at all. We are trying to be careful though for two reasons, one, we don't want to re-injure her back if her bones are still weak and two, because of the chemo, she is extremely susceptible to germs and colds. Fighting this cold hasn't been fun, we don't want to take on anything stronger than that right now.
We have had some issues with her eye but have been taking her to Virginia Eye Consultants (thanks for the post ladies!). They have taking very good care of her and are trying to avoid another surgery. So far they are happ with what is going on so it looks like we won't need to do another surgery.
I spoke with Dr. Gururangan from Duke last week about Taylor and he is very happy that she is doing so well. He asked me to get another MRI done so we can see what's going on in there. When I get the results, he wants us to bring her to Raleigh so he can see her. I talked with Dr. Dilustro, the neuro-surgeon from CHKD, to set it up and he was very surprised as well to hear about her being off of Decadron and her current condition. He was excited to set up the MRI and can't wait to see the results as well. We are very blessed to have some wonderful people helping us with her care. Dr. Dilustro is the doctor who first treated Taylor at CHKD in Dec. 2002 and has followed her since then. He is a wonderful and caring doctor who has been won over by our little girl! Who couldn't be? She does have her moments, and most of the medical professionals that we know have witnessed that first hand but they have also seen what we know of her. She is a very keen, insightful, witty, and wonderful girl with a kind soul who has been dealing with something really rotten for a long time now. Too long if you ask me. But she has hung in there and done everything we have asked her to do. I don't know anyone else who is that strong and I feel blessed and am thankful everyday that she is ours!
We are still trying to get PT/OT set up. Hopefully that will come soon. I also need to get back in touch with Langley Elementary to see if we can schedule home visits with the teacher. She desperately needs exercise for her body and her mind. We try but there are so many other things to do and you know, we are just Moms and Dads here. Not trained professionals who know what they are doing. We are led by our hearts and that has gotten us this far but we need that input from the pros! I just hope that she will tolerate it!
Sorry to cut this short. She is napping and I want to check on her. She was bitten by the insomnia bug and stayed awake for four days and nights! Well, that's exaggerating, she did nap for a half hour on Sunday! But that was it for four days! We have no idea why but she made up for some of it yesterday evening and has napped twice today. I am glad to see her resting comfortably because we all know how important that is for healing. We are trying so hard to keep her feeling good. Some days go better that others but to get positive feedback from the doctors feels great. We may not have won the war but we are fighting hard and winning battle after battle. That's all we can ask for now. Well, that and for you all to please continue your prayers for her. We love you all and appreciate it so much. Thank you again and God Bless.
Love,
Amy
Hello everyone!
Sorry again for taking so long to do another update! I guess "no news is good news" is the best way to look at it! Not a whole lot has been going on here. We are dealing with some low blood counts because of the chemo but they appear to be coming back up. It's just a slow process. We have lowered the steroid dose a little more. We are now down to .75mg per day! Yahoo! We did a .25mg reduction on Saturday and she has been really tired but otherwise ok. She usually gets tired for a few days and then her body adjusts. We just have to watch and wait.
Taylor has been doing ok. For the most part, she is in a pretty good mood and our days have been pretty uneventful. We try to stay busy and keep her mind occupied with books, movies, music, flash cards and planning meals! Food tastes kind of funny to her so getting her to eat is a challenge but she loves to think about and talk about food! We make her whatever she wants and hope that she'll at least take a few bites. Grandma Alyce and I sometimes feel like short-order cooks! When she decides what she wants for breakfast and we prepare it and bring it to her, she usually starts talking about lunch and dinner before she even takes her first bite! She's a funny kid!
She is still trying to move her right arm. She has also lost more of the fluid that she was retaining. Slowly but surely, it is coming off! I made a call to the hospice nurse that comes out every week and asked her about getting PT/OT to come to the house. I had asked Taylor about it and she was all for it. So, I should hear something back soon and hopefully we can get that set up. I think that it would do her alot of good to move around some more and have somebody helping her who knows what they are doing. We do range-of-motion exercises and alot of massages. We also began working with a two-pound weight for her left arm. It's so hard to just watch her lie there all day without moving much. Hopefully we are doing the right thing and it will benefit her. We have been trying to find the book "What to do when your kid has a brain tumor and you have no medical experience and nobody really wants to try and offer any positive help and you just have to wing it most of the time and trust your gut" but I guess that one hasn't been written yet. If anyone comes across it, please pick up a copy of it for us! Maybe we'll just have to write it. You know, in our spare time!
Well, that's enough sarcasm from me for now! Basically she is ok for now. No better no worse and we'll take that. Grandma Alyce is still here playing the role of Cinderella and we appreciate her so much. Paula and Keith and John and I are all hanging in there. Everyone is doing ok. As always, thank you to the countless people who have been there for us and continue to love and support us. There are so many who do nice things for us all the time and we can't tell you thank you enough. The prayer chains are still going and I hear all the time of Taylor being added to another prayer list. Thank you all for your love and compassion throughout this difficult time. Thank you for sticking with us for so long. We feel very blessed to know so many wonderful people.
God bless,
Amy
p.s...I tried to re-send some pix to Mrs. Capone so hopefully they went through this time and she'll be able to post them. I just picked a few from her birthday and a few from Christmas. I'm still trying to get the slideshow working that I did from our Florida trip so hopefully one day we can get that on too!
1/21/04
Hello everyone!
Just wanted to send a quick note saying that Taylor's doing ok. We have continued to decrease her steroid and right now she's down to 1mg a day! Yeah!!! She was at 8mg a day in November so were pretty happy about that. Her dose was reduced to 1mg on Saturday and she has been a little slower and a little sleepier since then so we are toying with the idea (and consulting with the doctors of course) of raising it back up to 1.25mg a day. She has handles the taper pretty well so far but I guess as you get down to the lower dosages, you have to be careful and go a little slower. Some of the fluid that she has been retaining because of the steroid has started to come off and our hopes are that as more and more comes off, it will make it a little easier for her to move around.
The infection came back again last week and we are just finishing another round of antibiotics. Our thinking is that now that the central line is out (the source of the infection) that this last round should kick it out of her system once and for all.
Well, that's the latest breaking news from our house. John, Keith, Paula and I are all doing fine and hanging in there. My mother-in-law is still here with us and she has been so helpful. Taylor calls her Cinderella and sends her on almost daily missions to the grocery store for various things that she gets a craving for. It's really funny. She is such a funny kid and while she does have her moments (many of them some days), her sense of humor has truly prevailed! She's truly amazing.
Thank you again for all of the messages of prayer, love and support. It means so much to all of us.
Love,
Amy
01/07/04
Happy New Year!
Well, I hope that everyone had a wonderful holiday. I haven't posted in a while but I did put an entry on the Dreambook one day. Mrs. Capone (who has been wonderful in keeping this website for Taylor) had recently moved and was out of school for Christmas break so I didn't want to bother her with it.
Our Christmas day went pretty well. Taylor was up early and spent the entire day and part of the next two days opening presents! She was one tired little girl! Keith and Paula spent Christmas eve with us and John's mom has been here from Minnesota since just after Thanksgiving so we had a houseful! More of our family came throughout the day to visit and bring even more presents! I thought before that she had one of everything, now she has two! She seemed to enjoy the day though. New Year's went pretty well too but she was tired. She had been up since about 4:00 that morning and didn't take a nap so by 10:30 she was beat! She started to lay back on her bed and go to sleep but she said, "Wait, I promised last year that I would stay up so sit me back up and I'll stay awake!" She was too cute! We ended up pretending at 11:00 that it was really 12:00 and did the countdown, shot off confetti and had a toast to the New Year! She immediately went to sleep after.
Taylor's health has pretty much stayed the same. No better, no worse. She started to show symptoms of an infection again about a week before Christmas so she went through another course of antibiotics. The hospice nurses suspected that the culprit was either her Broviac (central line) or the site where they took out the last temporary line right before Halloween. We wanted to wait until Christmas and New Year's were over with before taking her to CHKD to see the surgeon because we didn't want to chance having her in the hospital over the holidays again this year. So, long story short, we took her yesterday. EdMarc, the hospice company, arranged for medical transport to pick us up so we didn't have to worry about getting her in and out of the car by ourselves. She enjoyed the ride in the ambulance and they cranked up the stereo for her. A Creed song was on when they turned it on and she was jamming out!
The surgeon pulled the Broviac line right there in the emergency room! Dad watched the whole thing, I couldn't. I put my head under the little plastic sheet-thingy they put up over top of her and talked to her while they were doing it. Anyway, she did great and seemed to enjoy the afternoon being at the hospital. Of course she saw many people who remembered her and she received a lot of special attention! I guess anything is better than being at home all of the time. We are trying to find a way to get her out more often. I have put in an application with Handi-Ride through HRT and we should hear something within a few weeks. Then hopefully we can take a trip to the mall or movies and not have to worry so much about getting there and back and getting her in and out of the car.
We have seen something pretty cool in the last two days. She had regained some slight movement in her right arm. It has not really done too much for a long time now so to see her move it when we ask her to is a pretty big deal. In the fall she could move it slightly but only by moving her shoulder. Now she can move it at the elbow and a little at the wrist. Not a lot but a little. She can even grip your finger a little bit. Ever so slightly but that's better than no movement at all! Praise the Lord!
Well, once again it's either feast or famine with these updates. I don't write for weeks and then when I finally do, I can't shut up! I do have to run off for work though so I'm gonna stop for now and I'll try my best to write again soon. I really do hope that you all had a wonderful holiday with your friends and families! We would all like to thank you again for all of your love, support and most of all your prayers. Best wishes from all of us in Taylor's family for a blessed and Happy New Year!
God bless,
Amy