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Friday, February 27, 2009 3:45 PM
its been a loooong time since ive updated and well no news is good news.. our lives are relatively boring and normal. HA! normal, wow theres something i didnt think id ever refer our lives to be like...ok i'll rephrase: normal in most aspects.
jackie and charlotte are learning and growing in so many ways watching them interact with each other and others and seeing them experience things is just a truly amazing thing to whitness. listening to jackie chatter on about something as minor as snow on the ground is a big deal. to listen as she experiences that same snow melting and her thoughts on the hows and whys is truly a unique experience. charlotte is learning to speak up and her facial expressions as she tries to communicate is well , lets just say i am in awe. its hard to to fully comprehend that a loong time ago i couldnt speak and was mystified by ordinary ,everyday things in life. i also watch charlotte and jackie and cant help but reflect on what kylie was doing at that age and how she reacted to the same things the girls see now. its hard sometimes to look back and remember there really was life before cancer. sometimes i try and fall asleep at night and dream of the right before cancer moments and if cancer wouldve never entered the picture what it would be like now, but i always wake and realize that although it was awonderful dream it only lasted the moments that i slept and the moments of those dreams have passed back to now. kylie did have cancer and she she did die from it after 4 years of fighting it at the age of ten.. That was almost 3 years ago.
On march 23 of 2009 kylie would have been here celebrating becoming a teenager.. this birthday is very hard on me its alot harder that 11 and 12 were.(ok 11 was hard cuz it was the first birthday after her passing) 12 wasnt so bad, sad yes, bad no! im just not sure how im suppposed to feel.. should i be happy or sad?... yeah shes 13 but dammit shes not here! should i be angry? *@#%@! i dont know! I do know i miss her everyday and somedays are definatly harder than others.
this spring i am planting a beautiful butterfly garden. ive done alot of research and even have a few idea maps printed out. im no expert gardner but this is gonna be gorgous. i have a spot all picked out and even a few accesories to go in it and the girls are gonna help me plant it and well this is how im gonna honor and remember my kylie because she went to heaven on butterfly wings....
please continue to pray, pray for those losing their homes , those whom already lost their homes and those who never really had a home, please pray for our nurses, drs, teachers, firefighters, politicians(they really need it!) policepeople and please dont forget our soldiers wherever they may be and all children everywhere with love and respect amanda jo
p.s. Lemonade season is coming and im working on our 6th annual stand so please mark june 13th 2009 on your calenders and def. more to come on that!!!
Wednesday, December 24, 2008 5:08 PM
Just wanted to wish everyone a very Merry Christmas.
Remember to pray for all those families celebrating this year minus one(s) they love. weather its the 1st, 3rd(like us) or 30th its always difficult.....
please continue to pray for those without homes due to whatever reasons, your neighbors, your friends , dr's, teachers all children, those in nursing homes and most definatly those in the military (wherever they may be)... with love and respect, amanda jo
will update more in a few days.. May god bless you!
Thursday, November 13, 2008 11;47 PM
today an urge came over me and i got to missing kylie real bad.. Tommrow is a day like no other, both a happy time and a sad memory.. .. tomorrow will mark 6 years ago my sweet kylie was dignosed. the longest 11 days of our lives started on November 14th and led into a long 4 years and now an even longer 2 years since Kylie was recieved into heaven .. instead of rehashing the events of that day ... I must now say to myself "amanda, you must remember just as the lord may take away know that he also breathes life." tommrow in fact is my wonderful sister in laws baby's 1st birthday and so now God has blessed me with the ability to see past "the longest 11 days of my life" and celebrate life for what it is... LIFE. I thank the lord for breathing light on an otherwise dark day for me... I love that baby and im so glad he was born and im so proud of my sister and her husband......
i also wanted to share a very personal story as i need to write this down so i can make sure that this story somehow makes into my book(maybe as a quick how we are now ending) any-who.... Jackie is enrolled in a wonderful preschool where she not only learns the basics, you know shapes ,colors, social skills etc.. she is also learning the basic building blocks for developing a great realationship with God... shes learning to pray! Kylie prayed all the time and was adiment on doing the "god bless everyone,even if we've never met" line! well jackie and i were sitting at the table having a before bed snack and it was just me and her and we got to talking (and God really does work mysteriously) we ended up on the subject of kylie(aka "my kylie") to jackie. well she doesnt quite get the heaven thing yet and shes only 3 so we dont exactly talk death just that kylie lives with god in heaven .. what do you say when a 3 year says we should visit?? well you say(or at least i say) well Gods home is diffrent and real far away but if we pray maybe God will let kylie visit while we are sleeping in our dreams... well jackie says i wanna go to bed now then so i can see her(thats a praise for many reasons...smile) then she goes on to say ok lets pray for a dream.. ok... she folds her little hands and closes her sweet eyes and says in that most innocent ,precious, little sqeaky 3 year old voice "god please bring my kylie back" well as you can imagine i about bit my lip in two and quickly stood up, kissed her the top of her head and i say "mommy has to go potty"(yeah thats what i said..smile) ,that was lovely baby girl and i make a quick exit and i barely get my back turned and tears just flowed. i put myself back together and went back to sit with her before bed.. thankyou god for my blessings and thankyou for the pure enlightenment a child offers..... and with that Jackie is sound asleep and i do believe dreaming wonderful things...
as this most hectic season comes upon us i would like to take a minute and remember to not only pray for those in need (like our teachers doctors,military, president and president elect to name a few..smile) but also step back and realize what great gifts god has blessed us with.. start hugging people..smile...... with love and respect...amanda jo
Thankyou to those that still continue to check in on us and know how grateful we are for you (even if we've never met, as "my kylie" would say) SMILE
Saturday, October 18, 2008 11:36 AM
OK...... I realize that I have not updated in a while and decided thats what I should do today.... So, here is my exciting update...OH wait, nothing exciting going on. Today like all other days is just a day, a normal everyday simple day.. Although I must confess, im not sure what normal means.. .. Theres that skydiving family that every Saturday, its perfectly normal for them to jump out of plane and flail(at least thats what i would do..smile) towards the ground at 90 mph... ummm, thats not my normal! Nope my normal is getting up extra early,(as to beat the kids cherryness first thing in the morning) and going for a run/walk(which ive just recently aquired a taste for). Then coming back in the house and turning off the ipod and getting the kids up and playing with them and what not until, whenever.. today for some wild reason(and this doesnt happen everyday,OK it does!) I dwelled for a brief moment on the fact that I should be getting up with 3 kids .. Im not sure what brought this on(Ok i know what triggered it).. it could be the fact that I ran across videos and have decided to watch them and this morning I saw Kylie singing a small solo in the veterans program for school a few years back... I miss her voice! well you guessed it, this is my normal and thats ok. I fully plan/expect on every once in while just being sad and thats ok.. So despite my sadness today Im going to roll around on the floor and let the kids jump on me because that always makes me feel better to be with the girls....
speaking of.... Jackie turned 3 in August and is now attending preschool, and Charlotte just turned 1 oct 4th and has been walking since july! i have been on my toes ever since.. and that too is ok because they are both small and someday charlotte will be 18 and jackie will be 21 and im guessing they arent gonna want to roll around on the floor with me anymore....... just hug your kids even if they are grown......im gonna hug a special butterfly blanket tonight.
as always we need to pray and pray more now than ever I want to pray that whom ever gets the chance to be our next president has the hand of God on his shoulder and they make good decsions. pray for all kids, our teachers, our drs, nurses and our neighbors and never forget our soldiers wherever they may be...with love and respect Amanda Jo
PS im sorry about the lack of pictures im working on something that I promise I will be posting soon!
Monday, August 25, 2008 10:18 PM
ok school starts tommrow and i just wanted to send out a special prayer...
Lord bless the bus drivers as they wake and gather to drive from place to place picking up our littles ones and keeping them safe.
bless our children as they gather in anticipation and excitement for thier 1st day back to school, may they all have peace as they go about their day
bless the teachers as they gather their lessons and prepare to teach great things, may the knowledge they give out hold in the minds of the children, and as they meet many new and old faces
bless the many people behind the scenes, secrateries, cafateria workers and many extras..
bless the parents sending their kids off to school for the first time. bless the parents who wish their child was still alive to attend school this year..
i hope the school year is a most excellent one... with love and respect amanda jo
Thursday, August 7, 2008 10:09 PM
well in a few short hours it will be August 8th, 2008 . it will be 2 whole years since kylie passed away in our living room and was recieved into heaven....
sometimes it seems like just yesterday she was here getting ornery over something and then there are days where it was a lifetime ago.. i miss her more now everyday....
sometimes when im at the store i go into the shampoo aisle and i find the lorell(sp?) shampoo for kids and and i will seek out that certain fragrance, that one smell that was her favorite........ i missed that smell off and on due to baldness but she always made sure we had some so when the fuzz came in she could wash her hair(or fuzz whichever the case was)...... she was at the huggable height when you could really smell her hair.. i think im gonna buy me a bottle just to keep on hand in case they ever discontinue that brand..smile...
so, today we took the girls to the african safari wildlife and it was pretty nice and on the way out i took this picture and im pretty sure (ok i know) that this was Gods and kylies way of checking in.... here it is an untouched photo through my dirty windshield... simply amazing
speaking of amazing , i dont know if alot of people still check out my site but for those of you faithful readers could you please pass around my firstgiving link (bottom of the page) PLEASE.. as you may notice we are 97way from our current goal and wouldnt it just be amazingly wonderfully, delightful if we hit our goal , im not asking to surpass it im just asking to hit the goal!
some of you may have been wondering... yes im still writing my book, ive taken breaks here and there but im still writing and i guess it may not be published anytime soon but i promise with god and kylie as my whitness it will be published before my 90th birthday.. smile and all i can say is great books come to those who wait! BIG SMILE !
ok i will very soon be putting up some family pictures and some pleasnt suprises..
as always even though i could always use some prayer(couldnt we all) i ask that you pray for all children everywhere, pray for teachers as the school year gets ready to start, pray for those travelling both on vaction routes and those traveling down roads that are scary... pray for drs, nurses and those in the hospitals and nursing homes and always pray for your neighbors and our soldiers everywhere both here and there(where ever there may be) with great love and respect amanda jo
Sunday, June 8, 2008 11:13 PM
this is just a quick update, i will do a full update very very soon.....
our 5th annual lemonade stand went great! a big thankyou to the western reserve cheerleaders for thier help and awesome cheering....
ok heres the big news we did it! we raised (drum roll please).................... 2515.63 !!!! with our online page we hit give or take 3100.00 can you say WHOOO-HOOO! THE ONLINE PAGE WILL BE OPEN TILL SEPTEMBER SO THERES STILL TIME TO KICK IT TO OUR GOAL OF 3500.00!!!! we are very pleased check out the the online page by following the link at the bottem of the page..
ok next news the big raffle basket was won by.... mrs Sue Sayler
the 2nd chance for the 50.00 gas card was won by lola Raker and our last minute grill raffle was won by mr. jim Morman.. so congrats to those three and enjoy! winning tickets were drawn by jackie (kylies sis) and her friend rodney.....
like i said before i will have a bigger longer update very very soon with a list of thanks and more details just wanted to let the big details be known now.. i will also be contacting the norwalk reflector for a follow up story... thankyou for all who came out and /or donated online.. god bless you all !!!
please continue to pray for those in need and our soldiers! with love and respect amanda jo
here are all the pictures from before ,during and some after..... enjoy! thanks.. love and respect, amanda jo
Saturday, May 17, 2008 2:33 PM
JUNE 7th, 2008 in the WAKEMAN COMMUNITY PARK (on rt 20) from 11 am until 4pm or later...
An updated list of "Kylies Summer fun" raffle basket as of today raffle now holds.....
4 passes to merry go round museum in sandusky
2 passes to monsoon lagoon in port clinton
4 passes to Geauga lakes wild water kingdom in aurora
4 passes to goofy golf in sandusky
2 passes to ghostly monor thrill center in sandusky
2 passes and 10 dollar concession stand card for regal movie cinema
family of 4 pass to chucky cheese(4 drinks, large pizza, and 30 tokens)
10 dollar gift certificate to sugar creek resturaunt in norwalk
25 dollar gift card to walmart
25 dollar gift card to giant eagle grocery store
40 dollar gift card and gift bag for Pj spa
20 dollar gift card towrds flowers at floral images
10 dollar gift certificate to jillians food and grocery here in wakeman
20 dollar gift certificate for east of chicago
2 lbs of dunkin dougnut coffee
A 350 dollar value basket presale tickets NOW on sale.. contact me via email or phone (440) 839-2084 Amanda
and some other suprises that you'll just have to come to the lemonade stand and have some lemonade and check it all out.......
we will also be having in addition to the lemonade and raffle a bake sale and cheerleaders for entertainment.. ALL proceeds to benefit childhood cancer research
as always pray for each other and please pray for nice weather on June 7th for the lemonade stand and lets make our Angel and many others sing from the heavens as we raise money and reach above and beyond this years goal for our children to some day find a cure for all childhood cancers!..
also please pray for our soldiers with love and respect Amanda Jo
Thursday, May 1st
just a quick update.. james aunt from Indiana passed away and we will shortly be on our way to Indiana for the funeral and for the family.. please pray for safe travels and James family that they my find comfort and peace... with love and respect Amanda jo
two exciting things to add: first goofy golf in Sandusky has just added 4 passes to "Kylie's raffle basket of summer fun" for our lemonade stand..(see list at bottom) remember JUNE 7th,2008 from 11am till 4 pm in the wakeman Community park (in the center of town ,CANT miss us!) in addition to our lemonade and raffle we will also be having a small bake sale!
ok Bigger news and VERY exciting.... We are moving! yep we just bought a house and in 45 days or so we will be moving into our new home! now I am very grateful for the home we live in currently. after all Kylie lived here and she peacefully made her way to heaven here.. I believe Kylie would be very pleased with our new home and i know shes very excited for her sisters after all I truly believe she gave us signs and a heads up that this house we found was to be ours... so it is now.. and yes i said 45 days till possession, so you guessed around lemonade time we will be trying to move..smile!! ok i'll write more later, wanna go play with my girls.....so heres a goody repeat with update........
Im calling on volunteers,and fun seeking "lemonaders".... anyone willing to help celebrate kylies life by attending and/or helping us organize a kick butt lemonade stand this year!
We are asking for help in getting flyers distributed, getting the word out, donations for our raffle,and of course anyone who just wants to help a great cause by showing up at our Alexs lemonade stand this year...
anyone willing to just take a few minutes to help our future out. you can volunteer however you wish, please contact me with anything you may be able to help with, even if its a sugestion or advice, ALL imput is greatly appreciated! Or just shpow up, we'll be glad to have you!
Someday when the news breaks that a cure has been found, wouldnt YOU like to stand up and say " I was a part of that"??? wouldnt the ^angels^ above just sing with pride over how wonderful the community has banded together? I know one ^angel^ that would! Smiley Kylie!!!
We owe our children this much, we owe our children and the children of our children, the possibility of a childhood cancer free world. We need to give hope to the children already walking that long hard treatment road, that there is light at the end and that they may live long lives. we owe the parents of these children fighting insurmountable odds a break.... NO one should have to go through what Kylie went through and NO parent should have to see thier child go through that..
Did you know that in the United States , the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65? Childhood cancer occurs randomly and spares no ethnic group, social economic class, or geographic region.
so our lemonade stand celebration will be taking place on June 7th, 2008 when we raise hopefully above and beyond our goal towards childhood cancer research at our 5th annual Alexs Lemonade Stand in memory of Kylie and in honor of all her friends and all children everywhere sick or healthy!
Now for those that cant make the stand for whatever reason, I have set up a first giving(very secure) donation page (link at bottom of this page) forward that link to everyone you know... all donations go straight to the stand headquarters and are counted towards our goal.
as always I ask that we continue on in praying for those in need and even those not in need.... with love and respect amanda jo"
also here are a few of this years big basket raffle, im sure you'll enjoy if you win... we are appropiatly naming it "^angel^ Kylies summer of fun basket" contact me if you would like to pre-purchase raffle tickets- via email.. you dont have to be at the stand to win! im hoping more will be added before the stand.. I will update this list as often as i can.... so check back to see what fun Kylie has in store for you this summer! tickets are 1 dollar for 1 or 6 for 5 so far the basket includes....
..2 passes to Monsoon lagoon in port clinton
..2 passes to ghostly manor haunted attraction in sandusky
..4 passes to the merry go round museum in sandusky
..a 10.00 gift certificate for east of chicago pizza
..a 10.00 gift certificate for jillians carry out(here in wakeman
..a 10.00 gift certificate for sugar creek resturaunt in norwalk
..4 passes to Goofy Golf in Sandusky
..and of course a few little goodies that shall be a pleasant suprise
like i said the list is growing, if you do decide to contact me please head your emails "lemonade" so i know to look at them because if i dont reconize, i dont open (sorry for the inconvience) anyway enough of all that..
as always pray, pray for yourselves, pray for each other just pray! its good thing! with love and respect amanda jo
Tuesday, April 15, 2008 10:55 PM
well I am still here and nothing new or exciting to really tell about... of course I miss Kylie more than ever and as summer approaches and her date of death nears I get a little anxious but this year I made it through her birthday a little easier than last, so maybe just maybe i'll make it through August in the same manner.. right now im looking forward to Mothers day! will it ever get so easy I wont think about it? Most likely,NOT.. does time really heal? Yes and no. yes it does because it does seem to get simpler(sorta) and of course no because when greif hits, it hits hard as if it happened just yesterday and I imagine I will be greif stricken at random for the rest of my life... But you know what? thats ok ,its perfectly normal ,its life and i welcome all random grief moments because its now a part of who I am and I like who i am!....
do i ever have regrets as to if we shouldve did that or only have tried this.... NO i absolutly do not. I know that we did everything we could and God did the rest, I know God armed us with the knowledge to get through each and every situation we were put into.. i dont regret any descions, displines, unruly moments because i know that for a brief period I molded another human being and had she of lived she wouldve been a honest, moral ,educated, outstanding , compassionate citizen.. would she have been perfect? Nope! none of my kids are perfect and as a mom I respect that! If i cant achieve perfection then why would i burden my children to achieve something that no one can ever achieve until they get to heaven. would she have made mistakes..you bet! and that too is ok, we all do it! and that would have been a part of who she was.....
Im not sure if this sudden outlook happened over night or if ive been reaching for this point for a while... doesnt matter, what does matter is that im a mom who is blessed to have the 3 coolest children and im looking forward to bringing up both Jackie and Charlotte in the same manner, not in their older sisters shadow, just in her love and most importantly in Gods love
now in other news jackie and im thinking charlotte have bronchitus and jackie has an ear infection so please pray they get better soon and the rest of us dont get sick...
there are a few things i wanna share but im gonna wait, another day or two but i promise not to keep you in suspense
and of course theres the lemonade stand and a repeat post:"So in honor and memory of her Im gonna focus on the many,many many memories she left behind for us and Im also gonna take this time to promote Alexs lemonade stand in her memory...
Im calling on volunteers, anyone willing to help celebrate kylies life by helping us organize a kick butt stand this year!
We are asking for help in getting flyers printed, distrubuting flyers, getting the word out, donations for our raffle, anyone willing to just take a few minutes to help our future out. you can volunteer however you wish, please contact me with anything you may be able to help with, even if its a sugestion or advice, ALL imput is greatly appreciated!
Someday when the news breaks that a cure has been found, wouldnt YOU like to stand up and say " I was a part of that"??? wouldnt the ^angels^ above just sing with pride over how wonderful the community has banded together? I know one ^angel^ that would! Smiley Kylie!!!
We owe our children this much, we owe our children and the children of our children, the possibility of a childhood cancer free world. We need to give hope to the children already walking that long hard treatment road, that there is light at the end and that they may live long lives. we owe the parents of these children fighting insurmountable odds a break.... NO one should have to go through what Kylie went through and NO parent should have to see thier child go through that..
Did you know that in the United States , the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65? Childhood cancer occurs randomly and spares no ethnic group, social economic class, or geographic region.
So with that being stated, Happy birthday my sweet Kylie ,your birthday celebration will be taking place on June 7th, 2008 when we raise hope fully above and beyond our goal towards childhood cancer research at our 5th annual Alexs Lemonade Stand in your memory and in honor of your friends and all children everywhere sick or healthy!
Now for those that cant make the stand for whatever reason, I have set up a first giving(very secure) donation page (link at bottom of this page) forward that link to everyone you know... all donations go straight to the stand headquarters and are counted towards our goal.
as always I ask that we continue on in praying for those in need and even those not in need.... with love and respect amanda jo"
also here are a few of this years big basket raffle, im sure you'll enjoy if you win... we are appropiatly naming it "^angel^ Kylies summer of fun basket" contact me if you would like to pre-purchase raffle tickets- via email.. you dont have to be at the stand to win! im hoping more will be added before the stand.. I will update this list as often as i can.... so check back to see what fun Kylie has in store for you this summer! tickets are 1 dollar for 1 or 6 for 5 so far the basket includes....
..2 tickets to Monsoon lagoon in port clinton
..2 tickets to ghostly manor haunted attraction in sandusky
..4 tickets to the merry go round museum in sandusky
..a gift certificate for east of chicago pizza
..a gift certificate for jillians carry out(here in wakeman
..a gift certificate for sugar creek resturaunt in norwalk
..and of course a few little goodies that shall be a pleasant suprise
like i said the list is growing, if you do decide to contact me please head your emails "lemonade" so i know to look at them because if i dont reconize, i dont open (sorry for the inconvience) anyway enough of all that..
as always pray, pray for yourselves, pray for each other just pray! its good thing! with love and respect amanda jo
Tuesday, March 18, 2008 11:20 PM
March 23rd 2008: Happy 12th birthday my sweet angel, I miss you soooo much and my heart is forever broken, we all love you and miss you very much! until we meet again.......
Hello all,
In a few days there are 2 very special events coming up one being Easter where our Lord Jesus died and rose for us! Above all he thought of us! How wonderful is that!?
2nd and not nearly as important but equaly as special(in my heart anyway) is Kylies 12th birthday or would be her 12th birthday and although I am very sad to think she isnt going to be here to celebrate, I am not gonna focus on being sad. we are here and we are going to celebrate her life! Kylie loved her birthday and I am so greatful that she got to have the 10th birthday blowout party that she deserved! Im grateful she got to have 10 birthdays at all. Im grateful that God trusted me to be her mother and also the mother of 2 more beautiful girls to boot!
So in honor and memory of her Im gonna focus on the many,many many memories she left behind for us and Im also gonna take this time to promote Alexs lemonade stand in her memory...
Im calling on volunteers, anyone willing to help celebrate kylies life by helping us organize a kick butt stand this year!
We are asking for help in getting flyers printed, distrubuting flyers, getting the word out, donations for our raffle, anyone willing to just take a few minutes to help our future out. you can volunteer however you wish, please contact me with anything you may be able to help with, even if its a sugestion or advice, ALL imput is greatly appreciated!
Someday when the news breaks that a cure has been found, wouldnt YOU like to stand up and say " I was a part of that"??? wouldnt the ^angels^ above just sing with pride over how wonderful the community has banded together? I know one ^angel^ that would! Smiley Kylie!!!
We owe our children this much, we owe our children and the children of our children, the possibility of a childhood cancer free world. We need to give hope to the children already walking that long hard treatment road, that there is light at the end and that they may live long lives. we owe the parents of these children fighting insurmountable odds a break.... NO one should have to go through what Kylie went through and NO parent should have to see thier child go through that..
Did you know that in the United States , the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65? Childhood cancer occurs randomly and spares no ethnic group, social economic class, or geographic region.
So with that being stated, Happy birthday my sweet Kylie ,your birthday celebration will be taking place on June 7th, 2008 when we raise hope fully above and beyond our goal towards childhood cancer research at our 5th annual Alexs Lemonade Stand in your memory and in honor of your friends and all children everywhere sick or healthy!
Now for those that cant make the stand for whatever reason, I have set up a first giving(very secure) donation page (link at bottom of this page) forward that link to everyone you know... all donations go straight to the stand headquarters and are counted towards our goal.
as always I ask that we continue on in praying for those in need and even those not in need.... with love and respect amanda jo
Saturday, March 8, 2008 9:03 PM
ok im done being mad (for now)!
Nothing like clean,wet, fresh snow (and lots of it...smile) to take your mind off things... Not to mention snow wrestling, sledding and a good old hardy, happy ,laughfest of a snowball fight with your husband and neighbors to just make the day seem alot less dreary..... Kylie would have loved the snowball fight we had today.
Not to brag, but Im a pretty funny gal sometimes and one of my favorite things is to make my children laugh, so today I thought of miss Kylie as my loving husband nailed me in the eye with the frozen powder called snow (those of you that know us well ,should know we have serious issues with our eyes)(its all fun and games until someone loses an eye is a very serious threat in this family...smile),anyway, i ever sooooo dramaticly grabbed my eye and paced around letting out weird frozen yelps of dismay as i bounced and fell and half rolled around in the snow the whole time moaning and groaning "oh my eye, oooh ahhh yooou gottt mmemememe ohhhhahhh......" and so-on and so-on(im sure you get the picture read that however you want, just make sure you read it as dramaticly as possible) so there i am feverishly wounded.(i made up feverishly for a ,you guessed it, dramatic effect..smile again) and oh so dramaticly sprawled in the snow still clutching my frozen eye(which really was fine by this point...sshh dont tell) i happened to roll on to my back and look up and through the dusty downfall of flakes i could see kylie(well not really SEE her but i could FEEL her) most importantly i could HEAR her! i could hear her infectious laugh at just how goofy i was being... which by the way all the moaning and groaning and twitching draws no attention from my husband(because he knows better...smile) so i suddenly just welled up and burst into a giggle, a 10 year old crazy giggle, of course then my husband notices that i have switched from sooooo dramatic to nearly loony wagon ready, so as he cares so much for me and my well being he preceeds to come over to me in the snow and in an totaly loving attempt to revive me from my loony bin moment , he lays on me and mushes my face into the snow which is a sure sign of affection...smile and then gets up and continues on with the snowball fight... after seriuosly rolling in the snow(think the snowsuit kid in the christmas story)and finaly getting up i proceeded to attempt to tackle him back... and the day went on like this.... I know Kylie laughed and laughed at her parents just being goofy! what a glorious day it was....
As always pray and with this weather please pray those seeking shelter, find it and those seeking warmth, recieve it. pray for our drs, nurses,teachers and soldiers... pray for everyone you meet.....with love and respect amanda jo
PS go out and play in the snow with your loved ones and dont forget to laugh and laugh!!! then when your done and you live nearby come over I'll have hot chocolate waiting(Im serious)
as promised a few recent pictures of Charlotte (drool and all) and Jackie.. Kylie loves these two as Im sure she watches over them (they are wearing Kylie hats..smile)! the last picture is an oldie but goody Kylie and Jackie.. as you can see we love to pose with hats on.....
the last 2 pictures are amazing the other day i was cleaning behind the dresser(yes i do that!) and i found a self portrait kylie drew...well notice the shirt in the picture and the self portrait....Awesome!
Sunday, February 24, 2008 10:38 PM
well i was thinking its time for an update....
I have not been doing so well lately, again I find myself in an angry stage, im not sure if its because her birthday is nearing and it falls on Easter this year or what, but I am mad. Im mad that I only have 2 beautiful children instead of 3, I am mad that I cant hug my oldest child or see her on and off the bus, I am mad that she was so smart to do well on profciecy tests but her body wasnt smart enought to rid itself of cancer, I am mad that world is still moving and Im stuck here being mad,Im mad that im mad. I feel guilty for being so mad and that makes me mad too! maybe Im not mad at all im just going "mad"! Im not 100 percent sure where all this is coming from because I have so many wonderful memories and I know was so blessed to have her in my lfe for 10 years.. Im not sure why now, all the sudden when its been nearly 2 birthdays since she died. I desperatly wish to be normal,...If I knew what normal was....so
Ive been trying to occupy my mind by planning this years best lemonade stand yet(coming in June).. It will be our 5th annual can you believe it..5th! We have wonderful things planned, I hope everything goes as planned...more on that as the time get closer...
on a lighter and more joyful note Jackie and Charlotte are doing well, getting bigger, stronger, and smarter everyday...Jackie is currently working on potty training. we are half way there and all you mothers out there know what I mean when I say half way, there are only 2 things to do on a potty and she will only do one(sometimes) any tips or advice or tricks of the trade would be greatly appreciated.... Charlotte is (we Think) teething a bit but we cant actually feel any teeth,that is once we get by the waging war with her tounge bit (so not totaly sure there)..smile... Other than that my 2 beautiful children are just that, beautiful! maybe sometime soon I'll post a cute picture of Jackie and Charlotte. I have sooooo many and I know everyone has lives and couldnt possibly spend a week on here looking at our photos so I will choose 1 or 2 or maybe even 3 for everyone to see......smile
as I always like to ask and hope that everyone does, please pray.. pray for my heart and mind to rest a little, pray for friends and family, children everywhere, sick people, healthy people, drs and nurses, teachers and school systems, pray for all families affected by cancer, which in a sad reality is everybody!..... with love and respect Amanda Jo
P.s this years lemondae stand is going to be monumentous(Im praying anyway) considering its our 5th ,so please if anyone has any ideas for our raffle or our stand in general or would like to volunteer thier time.. [please feel free to contact me via my email... its only a few months away and as everyone knows a few months will be tomorrow in no time! we need to cure our children yesterday! thanks again.. with love and respect again Amanda Jo
I have set up another page for those who want to donate online the link is at the bottom of this page its the firstgivings link....
Friday, February 1, 2008 1:15 AM
Im calling all prayer warriors! today Ive decided that I need to write about something deperatly needed, not by us(although a little wouldnt hurt..smile)
there is this woman I know who has a daughter who has been quite a ways out from treatment for neuroblastoma, recently the father had a small bout with skin cancer and then the daughter had to have suspicious moles removed(apparently a side affect of cancer could be cancer(interesting huh?) anyway and now the woman- is waiting on a scary phone call to either confirm or deny her having (or not having) breast cancer..
this family is so strong and so loving and so faithful. they used to live in a big semi and travel from church to church, he being a preacher and all, she homeschooled her young children and they made musical christian cds before settling down in one spot, and heading up a church and leading the all about faithful life, did i mention she already has COPD(she never even smoked)
now i realize that nobody is that perfect but ya know these people have my vote for absolute role models, so many in there shoes wouldve and mightve thrown up there hands and said "thanks god" sarcasticly and walked away, this family is a normal god fearing family taking there lumps (NO pun intentended) as they come and faithfully remaining faithful so lets pray for this family lets pray that they continue to remain strong no matter what the news, lets just pray for them. i'll keep everyone updated! as soon as i get permission ,i'll post the name and website(dont want to bother them right now)
pray for all children everywhere, drs, nurses teachers, our soldiers,our loved ones,and complete strangers.. with love and respect amanda jo
update on family: most likely breast cancer both breasts, biopsies on wednesday to confirm but this is the direction its heading.. my heart weeps and my prayers go out to the family, send yours too... website is www.caringbridge.org/nc/sarahsmith
thankyou
Tuesday, January 15, 2008 10:48 AM
Sorry havent updated in a while, not alot going on, life is kinda boring right now(I think thats a good thing)...
Charlotte is already rolling over and cooing alot.. I'm not sure but I'm kinda thinking that Charlotte just amy be our talker...smile(since the rest of us are soooo quite...Big GRIN!) Charlotte or Sharley as Jackie calls her is just adorable and such a good baby. I'm sure Kylie would have just smothered her in kisses like she did Jackie..
On the kylie front, I'm doing much better these days(cant promise the same next week) Its so weird I go in spurts, I look at our picture wall and all is fine and the next minute I look at the wall again and I just flood with tears... I have so many happy memories(alot more than bad ones..smile) ocasionally though A not so good memory sneaks in and the "woulda ,coulda, shouldas" join the party and that usaully only last a minute but it gets me every time..... then on to good memories again... just a rambling... Im very blessed for all the memories(good and and not so good) At least I have them!
please as always continue to pray ,pray for all those around us, our children ,our ederly and weak, as cold weather hits pray for those seeking shelter and warmth that they find it, pray for our soldiers wherever they may be,pray that those needing guidance like drs, nurses and teachers(to name a few) receive it..... with love and respect Amanda Jo
Monday, December 17, 2007 11:07 PM
Well we got the tree up and it took everything in me to not just curl up in a corner and squawl and bawl..... I let Jackie hang the ornaments and she did a faboulous job(even if if several ornaments are in the same spot). I will put up some pictures, when I muster up the courage to look at them and shrink them etc...
Im trying so hard NOT to be a grumpy old grinch(after all its not my birthday or even about me for that matter)... Its just soooo hard and its sooo dreary outside and we just have sooo much to get done.. Im actually just looking forward to it all being over with so I can take the tree down and put it away and try again next year.... Next year already? time has just kept right on moving, I mean I just came out of denial for goodness sake and now I'm pretty sure Im hitting on a bit of an angry spot.. at least Im aware of myself and thats a good thing....I just miss Kylie so much, and every time Jackie does something totaly cute(which is constantly) or little Charlotte hits a milestone or smiles for that matter.. I just keep thinking how much Kylie would have enjoyed(and gotten a little annoyed once in a while) them both.... Cancer really does suck!
well Im babbling again, I do that often these days so, thanks for checking in on us and know that we are well(as well as expected)
please continue to pray for those in need, in hospitals, nursing homes, military bases and in our own back yards, also pray for all those who have lost loved ones (which im sure is everyone), always pray for our soldiers wherever they be... with love and respect Amanda Jo
may you all have a blessed Christmas as we come together to celebrate our Lords birth....
Tuesday, December 4, 2007 11:43 PM
I know I keep saying that I am going to shut this page down.. I keep telling myself that there are people out there that sadly need the space more because they are struggling with hospital stays and such, but honestly I cant do it just yet, because I too need this space, for I feel great comfort in writing and expressing myself and well truth be known, I dont know what else to do if I didnt write... So, please bare with me as I continue to write here(even if its only once a month). I also want to thank you for continueing to check in on us...
I must say that the first year without Kylie has gone by quicker than I imagined. Honestly going into all the "seconds" is alot harder than I ever wouldve thought. Im guessing because I spent the last year pretty much in a numb dumbfounded state...
Last year, due to the whole "first" issue, we didnt do anything for Christmas(no tree, no decorations,nothing). My excuse was, Jackie is young and she wont really remember, so it was ok..
Well this year its time .... My girls need to know that we are celebrating the birth of our lord Jesus. It may be sad on my end and thats ok, but its also happy and a great blessing.. So, this weekend I will be pulling myself together and digging out the Christmas decorations and we will be showing Jackie a a beautiful ,holiday tradition, and making memories(thats what its really about)...
I am dreading seeing my ornaments because almost everything I have is hand made or picked out personaly by Kylie (kylie loved to make or buy buy special ornaments.) Needless to say our tree is very, very unuasly ecclectic...smile....
As of now im starting a new tradition for our ornaments. last year I bought a special ornament that will be hung for the first time ever this year, its one of those, "Im spending christmas with Jesus this year" ornaments for Kylie. Ive decided that there is no reason Kylie cant have an ornament every year.. So, I ordered 5 diffrent personalized ornaments. 1)a forever in our hearts-Kylie 2007. 2)a first christmas ornament- Charlotte 2007. 3)since Jackie likes trains this year, a train with her name engraved on it along with the year 4)three little bears on a swing holding a sign saying sisters are great with all 3 girls names and the year engraved. and the last one for me and James also with the year...
Ive decided that every year from now on, im gonna buy one special year ornament for each special girl and one for all of them together.. maybe in a few years when the girls are older they can each help in picking out their own and kylies special ornament.. we can make it a special "Ornament outing" along side with all the unique special beautiful ornaments that they too will someday craft. I think this will give us all something to look forward to ,and i think Kylie would approve. I think making little traditions and always remembering the reason for the season will be of great value to my girls...
There will come a day when I pull out that rinky dink , warped peice of tin with the shabby glue gltter on it and not cry, but just smile and remember, and tell my girls all about how kylie "worked all day" to make that perfect ornament.... We have been so richly blessed...
as the holiday nears as always please pray for those who may not get to be home with their families, pray for each other, our soldiers, those in hospitals,and nursing homes..always pray for our children both healthy and sick...with love and respect Amanda Jo
may you all have a blessed CHRISTmas and make many memories.... once again thanks for checking in on us..
Thursday, October 25, 2007 10:05 PM
Tonight I want to write a a story I would like to call a GOD story with a Kylie kick....
As many of of you know Kylie had many, many friends, one little girl Kylie especialy looked up to and admired was Kristen. Kristen has been a part of our family from the get go. She hadnt even met Kylie and did wonderful things for her and when they did finaly meet , they became close, so close in fact she went on Kylies make a wish trip to Florida.
well yesterday Kristen had a mishap and broke BOTH of her wrists(can you say OUCH!)... well when we recieved the news I imediatly called upon my good friend God(he's never let me down) and aked him if he could send Kylie down to watch over Kristen for she was having surgury this morning to set her broken bones and there was the posibility of pins being placed into one of her wrists...
When Kylie passed away, she had these hand made blankets that she slept under constantly and instead of packing them away I gave them to a few of her cousins and one to Kristen(I kept her most favorite for myself of course..smile). I'm sure Kylie approved of my descion to do so.. Anyway.....
Kristen with out prompting(and not knowing that I had asked God about sharing Kylie) decided that she was going to take her/kylie blanket with her to the hospital.. My husband also being quite fond of Kristen and her family also decided to stop by the hospital to check on her first thing after work. well he did stop, to pick her up something, it just so happened that he found a vase and some flowers that just so happened to be in Kristens favorite colors (the only ones in those colors).. He took those to her and she did well, No pins needed, she didnt even need any major surgury, they just set everything and casted her up and shes already talking about going back to school... Big thanks to God and Kylie for watching over her and making it all ok(told ya, he never let me down!) except for 2 broken wrists and some nausea from pain meds our little patient is home and doing ok, but please pray for complete recovery and no complications......
So thats my story for tonight, as always continue praying for all around you..... with love and respect ... Amanda Jo
P.S. all is well here, Jackie is doing good, Charlotte is doing good and I'm still sleep deprived but im A-ok and of course James is still working hard but taking the time to check on others.. and of course we know Kylie is doing perfect, where shes at...... we are all very blessed....
Thursday, October 18, 2007 7:41 PM
I did have an update the other night but for the first time ever I lost it in cyber world...smile.... who knows where it went, my guess is a cyber landfill somewhere
anyway, things are good here just adjusting to a new baby and a 2 year olds schedule and new routine.. a little sleep deprived, but its all soooo worth it..
Ive been missing Kylie alot more than usual these days. I keep expecting her to be here, I know shes not, but I keep thinking that this whole thing is some sort of dream and Kylie will be here in the morning gettting ready for school or helping out with Jackie and Charlotte or what have you... I guess she is helping from above.
I cant wait to tell Charlotte all about her oldest sibling someday or how her and her sister are so very special because they have the coolest guardian angel ever... Im thankful that at least I can do that for them....
as thanksgiving approaches I wanted to share what Im most thankful for.... I am thankful for my best friend, hero and husband James, whom has been working 12 hour shifts from 6pm to 6am all this week with minimal complaint and even less sleep for his family. I am thankful for the fact that God chose me to be the mother and james to be the father of not 1 but 3 beautiful girls... over the years we have been truly blessed. Even when our tears fell blessing would equally appear. I will always be thankful for our friends, family, community and the abundance of love that has surrounded us.....
I would like to thank everyone who has taken the time out of their own lives to check in on ours even after our sweet Kylie went to her real home,and of course those who prayed and continue to pray.....
speaking of prayer , I do have a few requests, please keep my friend sam and her family in your prayers as Sams dad recently went to heaven .(Im sure Kylie was on that welcome wagon), also continue to pray for those around you, all children, teachers, drs, nurses, all our soldiers and all people that God has created...... with love and respect Amanda jo
Charlotte Marie Houtchings born Oct 4th,2007.. compared to the picture up top.. 3 beautiful girls!!
Monday, October 8, 2007 10:07 AM
Just a quick update, I thought it would be somewhat cute to write an update on my actual due date...
Charlotte Marie Houtchings... Little sister to ^angel^ Kylie Maddison and Jackie JoAnn was born in Elyria on October 4th at 2;23am
weighing in at 7lbs 15oz and measuring 19 1/4 inches long.
She is just as beautiful as both her sisters and all is well here.
I will do a better entry later and add some pictures.
continue to pray for those around you.... with love and respect Amanda Jo
Here she is... Our little Charlotte.
Monday, October 8, 2007 10:07 AM
Just a quick update, I thought it would be somewhat cute to write an update on my actual due date...
Charlotte Marie Houtchings... Little sister to ^angel^ Kylie Maddison and Jackie JoAnn was born in Elyria on October 4th at 2;23am
weighing in at 7lbs 15oz and measuring 19 1/4 inches long.
She is just as beautiful as both her sisters and all is well here.
I will do a better entry later and add some pictures.
continue to pray for those around you.... with love and respect Amanda Jo
Monday, September 24, 2007 10:20 PM
Today we did something pretty cool and sad and nice and scary all at once... After a year of just having it in our possession, we pulled out Kylies wheelchair(somethings should just NOT be made in child sizes) we dusted it off and put a special sticker on it that said "donated in memory of Kylie" put a Kylie braclet on the handle and loaded it into the trunk of the car and drove it right out to, sadly where Kylie would have wanted it,- S20 childrens cancer clinic. We called the social worker(and good friend) there a couple of days ago and unfortunatly a family with an 8 year old could use a wheel chair... God bless them on thier journey and lets pray they dont need it for long, because a cure becomes available.....
Today was rough at the clinic, Im not sure it will ever get easier walking in that place but we did have good memories there too. The drs and nurses do wonderful things to make those children smile. Still, pushing the empty wheelchair down those halls was a bit difficult, however ,all the same, that wheelchair helped us alot because without it, I believe life wouldve been alot harder on Kylie. With that chair Kylie was able to get outside on good days and get around when walking was just to much. That wheelchair accompied us down to Mrytle Beach, to the Cleveland zoo and just out and about, it really was blessing(to see it as a positive)......well, my eyes are starting to water(we really need better lighting in our house..smile)
Still waiting patiently and anxiously for Charlottes arrival (or as Jackie says "Scharllie") Ive tried to rub my belly and plead with her to come out now, but guess shes cozy in there and doesnt want to yet, well truth be known, I personally am past the cozy stage and I REALLY would like to sleep even for a few minutes in a comfortable position(I'll take what I can get)
as always pray, pray and continue to pray for our children, for a our schools, for our friends,family neighbors and our soldiers.. and when your done praying for all the important stuff, please,if it wouldnt be to much trouble, pray for me to go into labor,like,um.... NOW would be fine!..smile with love and respect Amanda Jo
Wednesday, September 12, 2007 11:09 PM
not to much going on around here.....
Im just a few short weeks(3 to be exact) away from delivering Charlotte, and Im getting quite anxious.....
Jackie is just growing into quite the little independant,stubborn, ornery person.. I guess Kylie passed on those genes..smile.... Shes a pretty awesome kid, just like her sister Kylie, whom was also a pretty awesome kid..(James and I will take credit for that....smile, we like to raise em awesome... big ,huge SMILE)
school has been in session for a bit now, I hear the bus go by every morning (Kylie would have been a fifth grader this year) and I do get quite sad thinking about it sometimes. Im doing ok though, I am accepting of the fact that this is not going to get easier and time doesnt really heal just lessens the hurt a little.. its gonna be ok............... day by day.........
well like I said not to much going on just waiting for a baby.. the whole waiting thing is nothing new here, beings we spent the last several years ,just waiting, waiting for treatment, news, cures, disapointments,flights and all kinds of ups and downs... you name it and we've waited..
please pray for our soldiers, each other, nurses, all children and a special prayer for all teachers, may they have a blessed, uneventful ,fufulling educational year. with love and respect Amanda Jo
Saturday, August 11, 2007 11:21 AM
first I would like to thank all the words of encouragement and all the prayers these past week. We really ,truly appreciate all of you.
This past week was pretty emotional, as Im sure most can imagine. NO ONE should have to bury a child!! EVER!! Sadly one year ago today, thats exactly what we did we buried our oldest child.. Our 10 year old precious little girl, named Kylie, who could of been anybody she wanted to be... A little girl who loved deeply and inspired many.. A little girl, whom was just that, a little girl, that loved dresses, barbies, books and her family, A little girl...... I miss her terribly, and it seems every day gets harder.......................................
Its weird to think back and realize that in August of 2005 , Kylie was witnessing a lfe being born into this world and was so proud to be a big sister to a little sister(Jackie).To think that, just one short ,short year later(just 10 days before that very sister would become 1) that on August 8th at 6;14am, that same girl who witnessed life would breath out her last bit of life and be buried a few days later... Now here we are, yet another year has passed, Jackie will be 2 soon, Charlotte will be born shortly after in October and that and Kylie will be watching all of this from Heaven............. I of course wish she was here more than ever!!!!
Thankyou again for all the prayers and thoughts..
I have made the decsion that after Charlotte is born sometime in October, after sharing the news and a few pictures, I will be shutting this site down and finishing up my book. I will continue to periodicly update until then, and I will give ample warning before actually shutting down of course. I was hoping to have my book done by now but GOD said when its ready it will be ready... so ........
please always pray, for everyone and anyone ,all the time.. with love and respect... Amanda Jo
P.s. to 'all around sound" the dj who did Kylies 10th birthday party.. I hope and pray for a long succesful buisness because I would like to use your services for both Jackie and Charlottes 10th birthday parties also! After all you only turn 10 once!!!! BIG SMILE!!!
Wednesday, August 1, 2007 10:17 PM
hello all... today is August 1st and it seems time has just flown by... In one week ,it will be August 8th and it will mark one full year since since kylie left home on earth with us to go to her permanent home in heaven.
I cant really say just what i am feeling, its all very mixed up. there are days where i am very content watching Jackie grow and anticipationg the arrival of Charlotte, then there are days that i just cant seem to get a grip, why isnt Kylie here teaching jackie something cute and also anticipating a new sister? many of you are aware that Kylie actually witnessed the birth of jackie and it makes me sad to think that she wont be here personally to see her second sister arrive. of course i know she'll be there in spirit as always but its just not the same.
there have been many a mornings when i wake up and think ok, today i am going into the living room to find kylie on the couch watching the disney channel and then im gonna get jackie up and make us all breakfast and continue on with the day, alas the tv isnt on,and kylie isnt on the couch waiting. and its just me and jackie starting the day and eating breakfast
sometimes i can just say kylies name over and over and talk about all the wonderful and not so wonderful times like it wasnt a big deal! then there are those days that mere thought of kylies name brings me right to my knees, with waterfall tears flowing into the river of reality- and well frankly those particular days suck! I have been blessed to have less of those days, but i still have them.
I dont mean to ramble and i really havent even scratched the surface on what exactly im feeling.. so i think im just gonna close with my usual prayer requests and maybe write some more later...thankyou for checking in on us.
please pray for all children everywhere, our soldiers and as always each other.. with love and respect amanda jo
Saturday, July 14, 2007 1:22 PM
The picture above was taken yesterday at the Relay for Life in Norwalk. We purchased a luminary candle in Memory of Kylie and Miss Jackie place flowers for her sister near it. I was later priviliged to release 10 purple balloons, surrounded by friends and family in Kylies memory.. I might be a little bias, but I cant wait to send my children to such a supportive ,excellent school, where I know they will recieve excellent educational skills and learn all about community, compassion and understanding from some of the best teachers.
Its been a wonderful emotional week.. a quick recap.
on Monday we ventured up to the Cleveland Clinic where we met up with our wonderful nurses and a few of our doctors. It was a very emotional trip for James and I, having spent the last 4 years practicly living within those walls,pacing all those halls and both crying and rejoicing in the corners. I was deeply touched to discover that almost a year after our sweet Kylie made her way to Heaven, the clinic, where she recieved so many chemos,blood and platelet transfusions (among many other treatments) still has her pictures and artwork hanging on the walls.
we also went fishing a few times this week and as always remembered Kylie. Oh how she would have loved to be sitting out there baiting her own hook and reeling in her own fish and then proudly adding 6 inches and 10 lbs to its actual size and boasting on how SHE caught the biggest fish ever.. On a boat or off the peir ,that girl really liked to fish. I'll always laugh at how she would name the minnows and then shove a hook through the eyes and cast them out and haul in a fish. she was lucky like that. then again this was the girl who would just be walking and look down and find not one but 2 or 3 , four leaf clovers, i hardly ever found 1...smile...
We also made our way to cedar point ,where the last time we were there Kylie was finally big enough to ride the rapture, so she did and proclaimed it "most awesome ride ever" and rode it several times that same day. we have her picture from the very first time on that ride, hanging from our key rings still. that day was also her last trip to Cedar Point,(of course not knowing that at the time) irony, is that her last day ever at the point was her first time able to ride the ride she had been anticipating so much to ride for 2 years prior... God was good to her that day, as he was every day......
We also made our way to the zoo, we couldnt go the cleveland zoo because ,sounds funny but i wasnt ready for that quite yet so we went to the akron zoo instead, none of us had ever been it was a nice trip and we made lots of memories. its funny how i can do some thing but the thought of other things choke me up... oh well in time it will all be work out fine, cant hide forever and i have been very blessed to have all the memories that i do have because some people just dont get the chance to make memories like that.
as Aug 8th(the 1 year anniversary of her death) approaches and we continue to remember Kylie and her 10 years of life, please go out and hug your children, and make lots of happy or even not so happy memories, just make the memories-they'll all be happy 20 years from now, anyway....
well anyway, I hope everyone is having a safe happy summer.. always pray (even on vacation) for those around you, all children, and our soldiers. with love and respect Amanda jo
Friday, June 29, 2007 8:29 PM
Just a short note.. Kylies Headstone was finally set up last night, after a long uphill battle with a few people(but thats neither here nor there), Its finally up and beautiful
just want everyone to know that after nearly a year her special ordered, one of a kind, breathtaking monument is there for all to see.
Im happy its there because its there and its a small bit of closure yet Im sad that it there becuase, that means shes there too..... OH how i miss her every moment of the day, every day, every night i miss her more and more. its hard to believe that its been nearly a year since she passed away in our home ,in front of James and I. its been nearly a year since her daddy carried her out our door to the waiting hearse.. how special her life was to us, how special she was, how special the memories she left behind for us are.......
well Anyway Kylie Maddison Houtchings stone has been set...... I will put pictures up soon so those who cant go see it in person can see it!!!!! thanks for continuing to check in on us
Always Pray for those in need, all children everywhere and as always our soldiers both here and there.... with love and respect Amanda Jo
Tuesday, June 12, 2007 12:54 AM
The two pictures at the top of the page Kylie was about 3 or 4 and Jackie is almost 2... I just like these pictures side by side. I dont mean to brag but I sure do have beautiful babies..SMILE! I mean look at the cheeks on them girls, I just cant wait for miss charlottes cheeks to join the ranks... well anyway.............
well enough of the rambling... I must apologize for not updating right away and and most importantly, I must thank everyone for thier help in Saturdays stand. It was a complete success(it couldnt of been ,had it not been for our wonderful friends and family and supportive community) and a beautiful day to boot. (with the rain for 3 days prior I was worried I admit) I guess kylie asked God for a favor! thanks angel girl!
well before I get on with totals and winners and so on, I must share....
At the stand there was a small, single ,white butterfly that flew about the whole time we were there. It flew around people and in and out of the lemonade area. I am convinced that Kylie was indeed at her 4th annual lemonade stand. we know she was there in spirit(as she always is), but I believe she sent a physical reminder just to make sure we knew she was helping too....... enough of that my eyes are going blurry.
Anyway this year we had set out goal a little higher at 3000.00 dollars, NO we did not make that goal at this particular stand persay. I am however going to add up all past lemonade stands and online donations and over the past 4 years we have made..... drum roll for effect....
-year 1 we raised - 901.33
-year 2 we raised - 441.25(we got rained out)
-year 3 we raised - 2000.00 even
-year 4(this year) we raised -1462.33 (this amount will be a bit diffrent because we are still getting donations from people who couldnt come through the mail and such)
-online for year 3 - 275.00
-so far online this year(4) - 120.00
so our GRAND total raised TO DATE is; 5199.91 dollars thats 5199.91 dollars closer to a cure someday, thats 5199.91 dollars for a research grant to help obtain that cure. We may not have hit our goal this year (however the years not over either..HINT,HINT- online donations are still available), and that fact will just make us work a little harder on next years stand!!!
The winner of Kylies memorial game gift basket(which included several of kylies favorite (new of course)board games, card games, movie tickets, cedar point tickets , and a gas card) was won by an employee at Lear Seiglur Romec in Elyria and the 2nd chance raffle for 2 cedar point tickets was one by one of our own Western reserve High school teachers. Im not putting in names for privacy reasons but, Congratulations gentlemen.. enjoy and God bless! P.S our online donation page will be updated soon and kept open for a few months so please tell all your friends and continue to donate in Kylies memory for us... link at bottem of the page
we'll continue on next year and the next and the next........ until our childrens, childrens, children wont even know what childhood cancer is! see ya all next year , keep talking it up and please keep donating..
thankyou for checking in on us and know we are OK , we have our moments,our memories but never any regretts and thats whats keeps us OK......
continue praying for all those around us, all children, all soldiers and just always pray for whats on your heart... with love and respect amanda jo
P.S.S I am planning something for Kylies 1 year coming up in August , it will be very special and very touching .... I will write more on that as the comes and i get it more organized..
Saturday, June 9, 2007 9:31 AM
ITS THE BIG DAY! COME OUT AND SEE US IN THE WAKEMAN PARK FOR OUR ALEXS LEMONADE STAND AND HELP US RAISE MONEY AND AWARENESS FOR CHILDHOOD CANCER RESEARCH- ONE CUP AT A TIME.. IF YOU CANT MAKE IT OUT PLEASE FOLLOW THE FIRSTGIVING LINK AT THE BOTTOM OF THIS PAGE AND DONATE IN KYLIES MEMORY SECURELY ONLINE!
WAKEMAN PARK- AT THE LIGHT RIGHT ON RT 20...... CANT MISS US FROM 11 AM TO 2 PM GIVE OR TAKE! SEE YA THERE..
OUR GOAL THIS YEAR IS 3000.00 AND WE HAVE ALREADY RAISED OVER 800.00 DOLLARS IN IN PRE RAFFLE TICKETS SALES..
kYLIE WOULD BE SOOO PROUD!!!!!!! AS ALWAYS PRAY, PRAY THAT WE HIT OUR GOAL AND SOMEDAY SOON A CURE TO BE FOUND, PRAY FOR ALL THE PEOPLE DRIVING AND VACATIONING, AND PLEASE PRAY FOR ALL OUR SOLDIERS WHEREVER THEY MAY BE...... WITH LOVE AND RESPECT , AMANDA JO
Friday, May 4, 2007 12:47 AM
a link for donations to support our up coming lemonade stand is now available at the bottom of this page ( http://www.firstgiving.com/ )
thankyou very much for your support!!!
tuesday May 22
Just a quick update! We are adding another precious little girl to our family. yep, we found out we are having another girl. God has definatly blessed me with darling daughters. so there you have it... Kylie Maddison(our angel), Jackie JoAnn and now Charlotte Marie! Hope to see everyone on june 9th at the lemonade stand in the wakeman park Right on rt 20.. love to all!
Well hello all,
Its getting to be that time of year again...LEMONADE TIME that is! YES, YES and YES! James and I(along with friends and family) will be holding our 4th annual Alexs lemonade stand(and our promise) in the middle of Wakeman at the park on rt 20,(same place as last year) Saturday June 9th from 11 am until we run out of lemonade... The only diffrence this year is our preciuos Kylie will be watching from above instead of serving up cups of lemonade. No parent should have to lose their child to cancer. So lets make Kylie and Alex and all the other children angels (sadly, there are alot) PROUD, lets donate , donate and donate to fund that research, that just might find that cure for not just neuroblastoma but all childhood cancer...
I will be setting up a donation page to donate online directly to Alexs lemonade stand in Kylies memory. I will put that link up ASAP
Also you can find the link to Alexs lemonade stand at the bottom of this page to go to the website and donate, order cool lemonade items and check in on the Scott family progress as they continue to raise money several years after their sweet Alex has passed away. just so people are aware this organization is non- profit and all the monies raised go directly towards hiring of new scientists/specialist etc and grants/scholarships for research.. check it out!
also i will be accepting donations from people who cant make it to the stand, and dont really want to go the online route so , you can email me and i will send you my address, make your checks out to to "alexs lemonade stand" and i will count those checks towards our stands goal and mail them for you, i can even send back reciepts.
Now, just what is our stands Goal this year? well, last year we made 2000.00 dollars so this year we would like to bump that up and raise 3000.00(yes thats 3 thousand).WE CAN DO IT!
One last thing.. Kylie loved to play games so this year our raffle basket is going to be a family fun pack, all the card games kylie loved so much, a few board games, some popcorn, and some extra suprises, you'll just have to come and check it out! tickets will be 1 dollar a piece or 6 for 5 dollars You can also purchase raffle tickets early just email me for information.... anyone who would like to throw in a family oriented gift as way of donation for the gift basket raffle also please email me.. my email is at bottem of the page..
well thats about it for that.. we all are doing well james, me jackie and the little?? are doing well... thankyou for all your support and continued prayers.. Kylie was so proud to be a part of this community and we can see why because so are we...
please as always pray for those who are in hospitals or nursing homes, pray for all children everywhere, those travelling for vacations etc, our soldiers always.... thanks again.. with love and respect amanda jo
P.S. Holly, we are planning to visit soon, thought I would warn ya love ya lots!...smile
Sunday, April 15, 2007 8:23 PM
Sorry havent updated in a while, honestly its been a rough time emotionally. I think celebrating Kylies birthday last month with out her here really brought it home that she isnt here, and she isnt just gonna come home from friends house, or what not.
watching her birthday video and seeing her smile did comfort me, but at the same time knowing that i have to wait out my life time before i can see her again... well.... hurts!
as we get closer to her one year death anniversary. I cant help but remember this time last year, when we were told the awful news that this is it she is gonna die this time theres nothing left!, since the docs arent God the best they could say was less than a year. So we planned a final vacation with just the four of us and made our way to mrytle beach where we did have a great time trying to forget the reality and hoping against hope that when we got back home, that miracle cure would be at our door, alas.... it wasnt.
although our trip was nice and we did have more good moments than bad , in between those good moments we had to deal with the bad moments of pain issues, grumpyness due to meds and extreme fatigue, not to mention a small infant that had no idea what was going on.. however we gave kylie all we could and she knew we did and thats what counts. the great life she had.
what brings out this emotion today was a church moment with jackie... We took her down to go to a daycare and she just went, it didnt bother her, she didnt really know anyone she just waved and went on her way. it reminded me of When kylie was about 4. i took her to her first day of preschool and i was so full of anxiety about leaving her( i was a young new mom,what can I say..smile), and her reaction of being left... well we get there and i showed kylie around and i fully expected some type of seperation anxiety but to my sad suprise, she just turned ,gave me hug said bye mom, waved and off she went, as happy as ever to leave me behind. i on the other hand was a complete bowl of jello and soooo sad..... when i went to pick her up,however, in her mind it was as if that morning never happened and she picked right up with me and all was ok.... that was kylie from the get go.... strong, determined and ready to be on her own and fly through her own path... its tough raising such strong willed , independant children.... i wouldnt have it any other way!
Kylies death was the same way, she told me loved me and went to be with jesus, I guess she always knew that she would be ok and just going on her way was always gonna be fine because even though she left us behind, she knew she was never alone..... even when she was 4
I see that same spirit in Jackie, a gift from her sister perhaps............
Please pray for our soldiers here and there, our children, our neighbors ,our communities, everyone in hospitals or nursing homes, also pray for our missionary groups in other countries...... with love and respect, Amanda Jo
Sunday, March 25, 2007 1:19 AM
March 23rd was kylies Birthday and it was of course another bitter-sweet moment.
Thankyou to everyone that came out to the cematary for her balloon release. Also Thankyou to cousins Ashley and Alyssa, who couldnt make it to Wakeman, so held there own balloon release in Dayton.
I made another picture video at the top of this page. I hope everyone enjoys it.
thanks to everyone who checks up on us from time to time and signs the guest book but please dont be bashful to sign your name, we have been very blessed with ours friends out there.
All is well here, as well as it can be....
never cease to pray and God bless you all... with love and respect, Amanda Jo
Tuesday, March 13, 2007 10:01 PM
sorry for the lack of updates, it seems time just gets away from me these days..
first off, I have a due date and it is..... drum roll please!...... Oct 8th.. yep the 8th. I bet Miss kylie probaly finds that funny (I find it ironic..smile) all is well as well as it can be. I am 10 weeks along now and so far so good
Jackie is growing and determined, with the nice weather finally breaking a bit she has been outside for walks and she really enjoys that.
Buford has turned a year old and hes also getting to be a big boy still a rambunctious puppy though.
Kylies headstone is in and we went to view it and get the writing and picture ordered. it is breathtaking and beautiful and hopefully will be up in place by memorial day. thankyou so much to all who helped take care of some things regarding the headstone.. God bless you
Kylies has been gone for 7 months now and I cant believe it. it seems like she was just here yesterday and at the same time it seems like shes been gone forever.... I miss her like crazy. As her birthday approaches (the 23rd) i cant help but think back to her 10th birthday party and how awesome it was... the food, the dj, the abundance of wealth(friends and family) that surrounded us.. what a wonderful time and i will forever be grateful to have been a part of her wonderful and special day. this birthday isnt seeming to bother me as much(it does bother me though, dont get me wrong, just not to bad) because i keep thinking she wouldnt have been to much diffrent, maybe a few little things. i worry most about what i call the "wonder" birhdays like 16 for example.. wonder what she'd look like?, wonder if she'd have a boyfreind or crush? wonder if she'd pass the driving test the first time? and so on and so on.. (we should never take those little things for granted) those birthdays (i think)will affect me more(i think they will all affect me but the "wonder" ones will get me the most). this birthday she would be 11 and the only thing i really wonder is what she wouldve wanted...well enough on that i am starting to cry....
as always pray, pray and pray, please pray for each other,all children, people in hospitals, nursing homes or hospice care , our soldiers and our great friend holly's daughter is in africa on a peace corps. mission so pray for them. with love and respect, amanda jo
Monday, February 5, 2007 1:29 AM
Well, this journal update brings ,suprises and happy/sad tears on my part.
First off, the Houtchings household is doing well. Jackie is getting bigger by the minute it seems. Her zany, determined spirit shines brighter as each day comes.
I cant believe that Kylie has been gone six months coming up on 7 soon(feb. 8th). I miss her sooooo much and its a hard thing to deal with sometimes. I know she extremely happy where she is and I also know that heaven is the most glorious place to be. Sometimes Im a little envious because God and all the other souls get to see her everyday and I sit here and only wish I had another day, if only to watch her sleep, touch her,hug her, Thats the most painful, I want another hug!
In March, We will be planning a birthday memorial of some type for her. more on that later......
We just found out, I am pregnant! I am very happy and excited, a little nervous, and scared. (after 2 pregnacies a third one should a be a cinch..hmmmm).. I wish Kylie was here to celebrate. I take comfort in hoping that maybe God let Kylie help out a little in picking out the baby we will be having sometime in September/October(no due date yet). I also take alot of comfort in the fact that Kylie will get to see this one being born too(best seat in the house). She was so proud to have been in the room and see her little sister Jackie come into the world... Jackie and new baby are and will be so blessed to have such a cool guardian angel to watch over them!
as always, continue to pray for our neighbors, each other all children everywhere, pray for our soldiers and with this bitter coldness, please pray that those without can find warmth. with love and respect, Amanda Jo
P.S. I will be adding all new pictures soon, I cant decide which ones to use.... smile!
P.S.S. Still working hard on the book, coming along great. Almost there!
Wednesday, January 3, 2007 8:55 PM
I hope everyone had a wonderful CHRISTmas and brought in the new year with many blessings and more to come.
I would like to take a minute and list the top blessings we had of the year 2006
1. we gave kylie the best last year of her life.
2. She was with us(mentaly) all the way to the end.
3. she was able to say "I love you" to me and James before she passed.
4. She died somewhat peacfully right here at home, where she wanted and needed to be.
5. she fought very hard and suprised everyone by hanging on the way she did.
6. we made the all the right choices regarding her treatment. we were able to do things FOR Kylie and not TO her.
7.Her "celebration of life" services went perfectly and thanks to camcorders - Kylie sang at her own funeral.
8. she got to see Jackie take her first steps and heard her first words and was able to play with her and love her little sister. She was also able to witness Jackies birth in 2005
9. we were blessed to have,hold,learn from and love such a wonderful little girl. she held,learned and loved right back.
10. she won her battle with cancer and was recieved into heaven.
11. she willed herself and fought hard to make it to her 10th birthday and she celebrated right through her physical pain and had the time of her life.
although we miss her greatly, her being here was the best blessing ever. just being able to love her and watch her was something I cant even put into words.
As we come up to the 6 month mark(the 8th)although it is sad to think shes not here and she should be. its a totaly wonderful feeling to know she WAS here!
I cant wait until Jackie gets older and we can tell her what a great big sister she had and how much Kylie loved and adored her. Speaking of Jackie- shes awesome, shes very intelligent, beautiful and shes very fun! what a joy she is.
Continue to pray for our soldiers ,all children everywhere and each other. with love and respect...Amanda Jo
Monday, December 25, 2006 11:35 AM
Merry CHRISTmas~!
I still hear the songs
I still see the lights
I still feel our love
On cold wintry nights.
I still share your hopes
And all of your cares
I’ll even remind you
To please say your prayers.
I just want to tell you
You still make me proud
You stand head and shoulders
Above all the crowd.
Keep trying each moment
To stay in His grace
I came here before you
To help set your place.
You don’t have to be
Perfect all of the time
He forgives you the slip
If you continue the climb.
Oh my family and friends
Please be thankful today
I’m still close beside you
In a new special way.
I love you ALL dearly
Now, please don’t shed a tear
Cause I’m spending my
Christmas with JESUS this year.
Thankyou for continuing to check in on us. As always please continue to pray for each other,all our children and our soldiers... with love and respect Amanda Jo
Wednesday, December 20, 2006 9:06 PM
As CHRISTmas get closer, I feel very blessed and very sad. Whats really hard is being at the store and seeing diffrent outfits, toys or accesories that I know Kylie wouldve have liked. Instead I made her a wreath and placed it on her grave. (its a Christmas wreath ,that I also added 1 purple flower and some butterflies to.)
Some have asked me what I would like for Christmas. Thats the hardest question in the world for me because what I want the most, No one could possibly get. I wish Kylie was alive and here and being her typical, pain in the butt, fun ,loving, happy , sweet, ornery self. I wish I could hug her right now, I wish I could joke and play around with her. I wish, I wish, I wish................. On the same note Kylie is so very lucky because she gets to witness Gods great glory now and for eternity.
Other than our normal greiving, the Houtchings Household is doing ok. Jackie is getting to be quite the charater and her determined personality is really starting to shine through. what a blessing.
Please pray for all the soldiers everywhere, the ones that are able to come home, the ones that cant get home for the holidays and the ones who went home to God and left behind families to celebrate with out them. please pray for all families that may have to spend Christmas in the hospitals. always prayer for all children.
As the new year rushes in and brings with it, the six month anniversary of Kylies passing (the 8th) please pray for this family. with love and respect.. Amanda Jo
Thankyou so much for checking in on us, may God bless you all!!
above are pictures from last years christmas at the clinic. I wrote the above entry last night and this morning I saw Kylies memorial page (link below) was updated. So, I went to it, and the the Heidleburg college boys had lit a candle and wrote a message, reminding me of the blanket they made for Kylie(she LOVED this blanket). They called her a "Christmas princess".. my point is I so desperatly want to hug my little girl and now I can. See, I was contimplating burying this blanket with Kylie, but couldnt because I wanted to use it and keep my self close(not to mention warm) so you'll find this blanket folded up next to my bed, for just such ocassions. Well now its unfolded and hugging me. I thank the angels who made the blanket for Kylie (and for reminding me) and I thank God for granting my wish....
Sunday, December 3, 2006 9:42 PM
Well, Ive been around for 3 decades now. Today I am thirty years old. Its been a little sad, and alot wonderful. This is the family milestone year that kylie was very excited about. She turned 10, Jackie turned 1, and now I, 30. Kylie missed Jackies birthday by a few days and mine by a few months but, I will be forever happy that she was here for hers and I know she was right here for our birthdays too.
Today I did some serious thinking and I realized I STILL have alot to learn, Lord have mercy on my next 30 years... What, I have, however, learned so far is.... being an adult IS really better than being a teenager, having kids IS all its cracked up to be and so much more, marrying your best friend IS the best thing in the world to do, frogs CANNOT walk backwards(thats a cool fact to only go forward), and its ok to cry in the middle of walmart, or at a movie or song, Or for no apparent reason, while driving down the road. So many things I have learned over the years I could type all night. Without God, I would have learned NONE of these things...
As the holiday gets closer , I also realized that we probaly wouldve gotten Kylie a really nice digital camera for CHRISTmas. this is the hardest part for me walking around a store and seeing things that I know Kylie would have loved and trying very, very hard not to put those things into my cart.
Jackie is getting bigger by the day and shes an absolute delight, I love being down on the ground with her.
thank you so much for continuing to check in on us.
please pray for all around you, our soldiers, the homeless, the hungry,people in hospitals or nursing homes, the medical staffs everywhere and always our children.... with love and respect.... amanda Jo
Tuesday, November 21, 2006 10:50 PMCST
Well here we are heading towards Thanksgiving and Christmas and soon a whole year will have passed and a new one will start. It seems to be just a fast forward through life. Kylie has been gone for just a few short months yet on some days it seems like forever ago and on others its like it was yesterday.
This weekend James and I had the honor of being in our sister Melissa's wedding. Melissa is/was Kylies favorite aunt and it was a touching bitter sweet moment. I suspect all memories made from her on out will be bitter sweet. Melissa wore Kylies charm braclet with a bride charm added, all the brides maids wore thier kylie braclets and I wore a lock of kylies hair in my hair. Kylie wouldve have loved to be in her aunts wedding(and she was,we incorporated her well, right down to a picture in the grooms pocket). She had always talked about being in it. She had the best front row seat, and had the best view, I know she was smiling. Congratulations to Chris and Melissa.
As much as I look forward to the memories to be made with friends and family this holday season, part of me wishes to just up and run away. I cant bring myself to shop for anyone or get myself into a festive mood. I miss Kylie so much,I cant breath sometimes. I am so blessed to have such a wonderful family, and great friends that help support me and each other through difficult moments. something I'm definatly thankful for. I wouldnt be where I am right now without my awesome husband and best friend James.
On another note, the school has erected a small garden(I think) in Kylies memory and Im looking forward to seeing it. (I got your message Mrs Jump, sorry I didnt get a moment to call you back.) Another blessing I'm thankful for.... community and teachers (someone should call the school board and get them some raises..smile)
Kylies headstone is on order ,for sure, and should be arriving(from europe) in in 90 to 120 days and then we get to work on engravement and picture placement. My guess is probaly late spring ,early summer it should be in place.
Jackie is getting sooo big and alot of fun she is, she makes me laugh.. im also very grateful and thankful that God trusted me to be the mother of 2 very special kids.
So, for thanksgiving, we are heading down home to Indiana. yet another place I'm thankful for.....
I wish everyone a happy,safe, and very blessed Thanksgiving. Please pray for our soldiers that have to spend this holiday season away from the ones they love and miss. Including the ones who are home, because a soldier is soldier and they all deserve our prayers.. also please pray for those traveling, those without a home or food, everyone in the hospitals or nursing homes,and all doctors, nurses and medical staffs. Pray for each other and as always, all children everywhere.. Thankyou so much for checking in on us (and yep I'm still plugging away on the book) with love and respect, Amanda Jo
P.S. in the link section below, you can find a link to a donation page for alexs lemonade stand. The page I set up for Kylie will be closing on December 8th (our 4 months since passing date). Anyway we are just a few hundred dollars away from reaching the 2500 dollar mark and I am asking that for the holidays, please consider donating to this wonderful charity and hopefully bringing a cure a little closer. you can donate right through this link at the bottom of this page.... http://www.firstgiving.com/forkylie thankyou again.
Monday, November 6, 2006 9:43 PM
Well, its been a busy(and rough) couple of weeks. Trick or Treat came and went. We did take Jackie out for about 20 minutes, I couldnt help but wonder what Kylie would have chosen to be this year. It was a bitter sweeet moment. After trick or treat,James and I went and visited Kylies grave and Laid a couple peices of candy on it. (I hope that raccon that visits her at night likes sweet tarts..smile.
I went hunting for the first time and rather enjoyed myself, sitting in the woods, not seeing anything, cold and bored(but very relaxing), freezing my you know what off. I loved it! I loved it alot, in fact I went out again this past weekend and got in a stareing match with a squirrl(i won!) plan on going again soon, I hope to get a deer for two reasons... 1. Wont have to buy meat for at least 5 months and, 2.I'm gonna get the deer, kylie would have eventually gotten herself. for those of you who didnt know, this is something Kylie was looking forward to. Hunting with her Daddy, he took her out in the woods on a scouting walk last year and she just loved it. She always talked about how she was gonna go hunting and get a deer,after that. Kylie was very excited about it,she also really liked deer meat! She was definatly an open minded kid.
Its also been sad around here, a friend of ours from Georgia named Lana Beth recently passed away, she too had neuroblastoma. Kylie met Lana in New york and they really got along great. I know they are playing together now! it sometimes just seems so unreal. they are just children..... something Im not meant to understand I guess.....
Took a short break from my book, and now with the 3 month anniversary date of kylies death(Nov. 8th) and the would be 4 year anniversary date of dignosis (Nov 14th )coming up, its time to get back in writing mood, its very theraputic. beleive it or not remembering all the treatments and emotions that went with it really help me keep myself in check....
please pray for the family of Lana, all children everywhere and our soldiers.. thankyou for continueing to check in on us, we really appreciate it.... with love and respect, Amanda Jo
Kylie and Lana in New York December of 2004-
Wednesday, October 25, 2006 11:37 PM
Sorry I have not updated in a while. There isnt alot to report. I, we, miss Kylie terribly and it seems as winter starts to set in, so does the fact that Kylie is gone. My heart aches, little things are getting to me, more so than before. Today I went to walmart and I bought the Hannah Montana cd. Kylie really enjoyed the show on Disney and I had promised her that when the cd came out, I would buy it for her and put it on her i-pod. So, today I bought it and I will put it on her i-pod. its funny, little things like that make me cry, yet I can look at a billion pictures of her and not shed a tear and only smile.(she had a great life and for that I am so grateful, thankful and very blessed) Im ok and I know I will be ok. I cant live in the shadows of what couldve, shouldve, wouldve been, but I CAN bask in the light she left behind.
The book is coming along and Im quite proud of myself(not to be conceited) it truly helps alot to remember and actually put into words my emotions. I have suprised myself on how easy it comes to me. My goal is to have this book done by her birthday in March and at least in the process of trying to get published by August. I think the idea of having a book about her life being published around the year anniversary of her death would be so honoring to her memory. Dont worry I wont kick myself if I'm a little late with it. It will still honor her just the same. that will also most likely be around the time I shut this site down too.
I am happy to annouce that the funeral is paid for and the headstone is on order( because of weather ,probaly wont go up till next spring anyway). We(our entire family) really feel grateful and thankful for all the help and support we got from the community in acheiving this. I however, will NOT be thanking the probate courts and such...smile.. well anyway from the bottom our hearts thankyou all for ..... well just everything, especially the prayers!
Jackie is getting big and she is such a joy, she just does the cutest things and what a blessing she is. she really is a good baby. she likes it when I read to her, although I must admit, Dr Seuss is a bit of a twister. Anyway will update more frequently.
Please pray for those traveling,all the children of the world, each other and always our soldiers, especialy as the holidays near.. with love and respect Amanda Jo
Sunday, October 8, 2006 5:15 PM
its been a full 2 months. things are going ok for me. I keep myself busy with chasing Jackie around and all.
Halloween was one of kylies favorite times, although she never knew what she wanted to be until last minute, it was always fun. one year we had this thought about running over a cheerleaders costume with my dads truck and saying that she was a cheerleader that was hit by the bus.... ok a bit creepy, but creative(sorta,smile). she ended up being a bat with purple wings( no direspect to cheerleaders,it was just an idea). one year she was a princess,another she was a zombie, she was once a witch with pink hair but that costume ended up looking more like a flapper from the 20s. one year, and my fav costume ever, she was a gypsy ballerina(as soon as i get my scanner working i'll post pictures) Kylie liked carving pumpkins and helping with my all time favorite "puking pumpkin"
this year jackie is going to be a lady bug. thanks for checking in on us. always pray for those travelling and those just in need and always our soldiers...with love and respect Amanda Jo
p.s. I was doing some checking and it appears that my firstgiving page for Alexs lemonade stand has almost reached its goal, but not quite there yet. Please consider Alexs lemonade stand to be your charity of choice! thanks and God bless.
Wednesday, September 27, 2006 9:45 PM
Today we did it. James and I made our first visit to the clinic since Kylies passing. this was easy and hard. Easy, meaning we got in the car and went. Hard meaning we got in the car and went.
I cried my eyes out just entering the parking garage. I cried alot and yet it was ok. First we went to starbucks and wonderful Tiffany ( wonderful starbucks girl who has been making our coffee for us the last 3 years) saw Jackie and was so glad to see her getting so big, then she asked how her other girl was and I told her and she was upset, she started crying and that made me cry too. Tiffany didnt know, she just knew that she hadnt seen us in a while, I shouldve sent someone down from the clinic to tell her. Tiffany thought miss Kylie was cool and talked to her all the time, we even have a few pictures of them together.
then came the actual clinic. that was so hard because, we spent ALOT of time there. I remember not to long ago me and kylie ventured up there every day for 3 weeks straight for radiation. As everyone saw us, it was emotional , we cried, we hugged,we remembered, we laughed. it was actually pretty cool and I think we'll visit again. Its really going to be ok.
one thing that did get me, was we let Jackie walk and she went into the treatment room and I swear she was looking for Kylie , she seemed to know right where she was. that made me sad, but at the same time grateful that jackie is here and for the first 11 months of her life, she got to hang out with the best big sister ever, and for the rest of her life she gets the best guardian angel ever!
so that was our day and Im glad we did it! God has blessed us so many times and he continues to do so. even in our dark hours, he lets his light shine through.
please continue to pray for all children, please pray for the families of those recently received and always pray for each other, also please pray for all the wonderful drs and nurses out there and as always pray for our soldiers.....with love and respect... Amanda Jo
Thursday, September 21, 2006 9:21 PM
well not alot going on here. Jackie and I are getting over a cold. I have been working quite a bit on the book. I have to stop quite often because certain memories strike me to tears, but Im hanging in and I WILL have this book done by Kylies next birthday. A disney adventures book came in the mail the other day, so Jackie and I went and bought a few small purple flowers and went and laid the magazine and the flowers on her grave. I miss her terribly.
I am almost done in cleaning Kylies room,its been such a joy and an overload on emotions. I can honestly say I havent cried as much in her room as I thought I wouldve. Dont get me wrong I did cry over a few sentimental things like a box that said "I love you mommy" and she dated it August 8th 2004. this more or less took my breath away to think that 2 years ago to the day she was writing her love for me. I found so many wonderful things that brought up memories that werent really forgotten just pushed back and now resurfaced. This is a good thing. My plans for the room are to eventually move Jackie into it and celebrate a person who is gone in body but forever in our hearts and memories, celebrate Kylie and her spring filled room, spring filled life. I hope to add special touches to personalize it to Jackie and at the same time let the sun shine over the rainbow from Kylie.
Something else I want to write about, September is national childhood cancer awareness month and not many people are aware of this. the ribbon of choice is gold. Kylies cousin Alyssa from Dayton is very intent on making more and more people aware of this. She is planning a special project about childhood awareness month. We are all very proud of her and her efforts will not go un- noticed.
Our prayers and hearts tonight go out to the Thomas family from here in Ohio. Christi Thomas passed away Tuesday morning. please pray for this family, and please also continue to pray for Kylies friend Lana Beth.pray for all children everywhere, with love and respect Amanda Jo
Thursday, September 14, 2006 2:06 PM
today i began a journey and started to clean up kylies room. it was one of those laugh/cry things. That girl was a pack rat!! i know where she got it because im going to keep about 85f her things...smile.
i found myself looking at a world ,not my own. i was looking at things with a kids vision. i found a drawing of a tiger,err lion,um lepard well anyway a cat and at the top of the drawing it said "suprise in the eye" so i examined the drawing and in very tiny Kylie writing it said in the white of the cats eye "I love you" that was pretty cool. so of course i kept it.
next I discovered just how much Kylie loved little jackie, i found a bag that said "me and sisies bag" inside was 2 of everything, 2 little green bouncy balls,2 bottles of bubbles, 2 rocks(not sure for what), 2 crayons, 2 necklaces, 2 mcdonalds trinkets,2 peices of paper(im guessing for the crayons) and 2 pairs of funky sunglasses.. this was really cool, so once again I kept it..smile
I used to clean her room and think lord ,child why would you keep this and now that shes gone .I get it!!. she may have been "older" due to chemo but she was after all still a kid and these little "silly" things werent silly to her they were her treasures of the world, theses were her worldly posessions and they were cool or fascinating in some way or she wouldnt of kept them. it all makes sence, as an adult i have "trinkets", that someone else would see and think thats weird but its not weird, its cool or fascinating to me and thats why i kept it!
Kylies "stuff" has alot of memories to it and its definatly cool and interesting to look at now. like the shells she brought back from mrytle beach or the 35 dollar rock (yes ,we paid 35 dollars for a rock..smile, its one of those geo rocks from a history museum in houston) she had to have from texas. she has these iddy biddy little cats that a social worker from cleveland had given her. They used to play a game, another nurse who works there hated cats, loves dogs and kylie and erin would take down his dog displays down and put all these cats up... it was pretty funny to miss kylie.
im ok in kylies room because i can just feel the love and I can hear her laughing at some of the funny stories associated with her "wordly possessions" its all a day by day, prayer by prayer experience.
My book is coming along and now after being reminded of a few things i now have even more memories to add to it.. smile..
never cease to pray, pick a person off the street and pray for them.... with love and respect Amanda jo
Friday, September 8, 2006 8:26 PM
Today marks one month that Kylie has been gone. last month Kylie was received into heaven. its been an emotionally exhausting day to say the least. I miss her terribly, we all do.
September is also childhood cancer awareness month and the ribbon is gold. Please go out and tell everyone what this month means and wear a ribbon to support all the children out there fighting cancer!
I'm not sure what to write in this space anymore. I've been working on and off on my book and most of my memories and time are being put into it. My hopes is to have this book finished by Kylies birthday ,march of next year, and at least in the works for publication by this time next year.
we are in still in the process of seeking a headstone. Well, we found the one we want, the picture to put on it and the saying to go along with it, we still are waiting on a price quote and then we will go with the best option and have it put up soon. at least with in the next couple of months.
Tonight we went out and checked on Kylie and saw that the solar light lit up, it was nice. I looked up and saw the moon and strangly enough it looks exactly like the moon did last month at this time,an orangish color. it sure was beautiful and made me smile. Our lord is completely awesome. To create something so simple(the moon -a big rock..smile) ,yet so complex and just so beautiful to see. Who wouldve thought a big rock in the sky would be so cool!
prayer requests: mostly for children who need comfort and rest. I keep track of a few kids in my favorites and some we actually met and others I just happened apon and have become attached to. Im asking that you pray for Christi, and Lana Beth. pray that pain is eased for both....
Kylie and Lana became friends in New York and they really enjoyed each others company,while having christmas parties. Lanas' mom is a wonderful woman. please surround both these families in prayer. with love and respect Amanda Jo
never cease to pray!!! thankyou for checking in on us!
Tuesday, August 29, 2006 9:41 PM CDT
Three weeks ago today, God received Kylie...
Things are going ok at the Houtchings Household, we've been moving right along. Of course I have my moments, there is NOTHING in this house that doesnt remind me of Kylie, and thats ok... It just goes to show that God has surrounded me with beautiful memories(even if it is an old tooth brush,its a memory).
Tomorrow School begins and at first I was nervous about seeing the bus go by and I was gonna try and hide from it Then I decided how crazy is that? Kylie would not want me to hide from something as silly as a school bus, instead Ive decided to embrace it. yes, absolutly Kylie should be on that school bus tomorrow, she should be going into the fourth grade with her friends, she should be here with me! Instead I am going to set my alarm, get up and face that bus and a new day. As that bus rolls by I'm going to smile right through my tears of sadness and remember all those times she was on that bus from the first time to the last time. Im going to remember how she loved getting on that bus, even when it took her a while because of limping, I'm going to remember her helping her little friend Rodney on the bus when it was his first time, I will be remembering how she just loved her bus driver Rita and would always give her hugs... Thats what I am going to do tomorrow,and everything will be fine, Im going to be fine.....Day by day and prayer by prayer............... I know for a fact the Lord will carry us through all these milestones that lay ahead and shine light where there will be darkness!
lets pray that all teachers and students everywhere have a great year, lets pray for all kids... with love and respect.. Amanda Jo
Update: 8:51am Wednesday Morning....I did it! Great big SMILE for Kylie!......... bitter sweet!
Monday, August 21, 2006 11:49 PM CDT
things are going ok here at the Houtchings household...Tonight After James went to work and the baby was sleeping I began my cleaning routine in the bedroom and had myself a good cry and now I feel better(sorta, I actually plan to do that often, because its ok to do that!). I really, really miss Kylie and thats expected whats gets me is finding little things throughout the house that just make me cry that shes gone.. yet I can can look at photos or my scrapbooks and just laugh at the great times... Something a good friend told me last night and it gives me great comfort... God didnt take Kylie,he RECEIVED her....
Jackie had a great birthday. Thursday her future teachers came over with pizza and jello cake and we had a nice time. Friday(Jackies official birthday) we went out just the 3 of us and one angel and we celebrated quietly. On Saturday( James official birthday) we had a family gathering. Just before people started arriving one little (only one) yellow butterfly came up to the door peered in and flew away.... Jackies party went nice and she got a few nice outfits for fall and some toys and and the party was fun. oh yeah did I mention she is officialy walking(I mean climbing)! (prayers for me please..smile) all and all everything went great and I have lots of pictures for the scrapbook(s)
I have checked on Kylie often and I'm anxious to get a headstone out there. We have one picked out , now we are just price checking and such. Its going to be beautiful and unique just like she was....
well, just wanted everyone to know we are ok and will be ok because there is only one set of footprints in the sand...
pray for all children everywhere, our soldiers, those traveling and each other.. with love and respect,Amanda Jo
Tuesday, August 15, 2006 11:45 PM
Its been a week since kylie passed away in our home and somedays have been harder than others. now that things have settled down and our family went home. it was just us to bear the emptieness left behind. so we have distracted ourselves and now our kitchen has been painted and its beautiful.
Kylies showing and funeral was absolutly beautiful. Kylie sang at her own funeral thanks to modern technology known as the camcorder. I am so grateful I was able to record her on one of her, oh so many, great days singing the song, I will celebrate... and that she did, she celebrated! though like the song says my heart is torn , I know that we gave kylie the best life. Right down to an awesome birthday party and a great little sister. Kylie was greatly loved and in turn she greatly loved back.
At her funeral 4 people spoke about Kylie. first was our friend and kylies nurse Holly,then our friend and Kylies tutor Cookie, then Kylies Aunt Melissa, and friend from the clinic, Kevin spoke. All four did a wonderful job! Our out of town preacher traveled from Indiana to officiate and it was a great pleasure to hear him speak on Kylies behalf.
Her showing went smoothly and lots of pictures and things that symbolized Kylie were placed in her casket ( a special ordered purple one) like a deck of playing cards from grandpa russell and a chess peice from uncle Chris(she kicked his butt at chess and she didnt even cheat..smile), a sudoku book , a fly for fishing from her papa branch and many other notes and toys from people. her best friend and much loved Cindy also went with her(cindy was a ragdoll bunny that had been through just as much as her, if not a little more!) All in all I can look back to just a week ago and know that we did it all for her and there are no regrets! After the funeral, we had a great little luncheon and then on to the cemetary, where we had a balloon release and We watched as she was actually put in the ground. I was there from beginning to end and it was all worth it! I got ten years of smiles!
I am sad , I do hurt, but on same note I am ok, because I know ,without a doubt that my baby girl, my first born is in heaven and cancer free with no pain. The Lord has given us comfort again!
I will update this page from time to time to ask for prayer on someones behalf or to share a special memory, thankyou so much for praying for us, the cards, the flowers,the food, everything. Now I have a book to write in Kylies Honor and memory........
So now I ask that you continue to pray, and never cease to pray,sadly there are so many families going through childhood cancer.....with love and respect forever and always, Amanda Jo
Tuesday, August 8, 2006 6:36 AM
It is with a heavy heart that I write that Kylie Maddison has completed her cycle here on earth and is now dancing before Jesus. She was engulfed in love and surrounded by her 4 parents.
I will be forever grateful that the good lord chose me to be her mom.
always pray....with love and respect..Amanda jo
viewing will be at the Mormon funeral home in Wakeman on Cooper St... Thursday the 10th from 2 pm to 9pm and the funeral or celebration of life service(as I like to call it)will be Friday at 11am with a special luncheon to follow around noon......
Although I am sad I am also very joyful,I have 10 years of special memories to hold onto until we meet again.....
Our family would like to thank everyone from the bottom of hearts for all the love ,generosity, support and mostly prayers.....my words will never accuratly describe how touched we are by all of you.... with love and respect Amanda Jo and family
Saturday, August 5, 2006 11:42 PM
Kylie is hanging in there and our time is very limited. yesterday kylie had 2 seizures and things were hectic. today was a little better. I am at peace and I know that we have done everything we could and God has granted us our time, and for that I will be forever grateful. life is precious. so, I will not be updating again until our little girl goes home to dance before Jesus.
Thankyou for all your love, prayers and support.... with love and respect, Amanda Jo
Friday, August 4, 2006 7:47 AM
All is ok as ok as its gonna get over, here in the Houtchings Household.
Our days are getting tougher but we are all hanging on and hanging in there.
Kylie had her blood drawn on Tuesday along with pump increased and is currently resting somewhat comfortable. She still complains of shoulder pain but nothing super severe. her blood counts werent the greatest but we've also seen them worse. James and I have decided that its in Kylies best interest to no longer travel to clinic, Kylie has lost her balance and its just to stressful on her to take a ride.. Her zometa can be infused at home so when shes due for that we'll get it here. As for blood products, at this point in time giving kylie blood does not help as much as it used to. In the last few weeks , we have observed the fact that everytime kylie has gotten blood her disease has progressed causing more pain. We feel at this point any blood may just be feeding her tumors and not her.......i am in no way a doctor, thats just an opinion and my understanding when the drs talk. day by day and prayer by prayer here.........
There was another teachers meeting last night, it was enjoyable, those teachers are a trip, they crack me up! smile what a blessing this community is.
Im asking that prayer continues, please take a moment to hug your children, your friends, your neighbors, never miss a moment to tell a loved one just how much they mean to you...
I saw a beautiful quote on another website, Im not sure who said it but its perfect... "life is not measured by how many breaths we take but by the moments that take our breath away"... with love and respect.. Amanda Jo
Monday, July 31, 2006 11:55 PM
All is well in the Houtchings Household, as well as its gonna get anyway.
Yesterday Kylie was able to get out and see the firemans parade and it was nice. HOT, but nice. She managed to stay cool with a wet washcloth and one of those spritzing fans. that was a blessing. The outing was a very warm blessing..smile
Today kylie had pain in her left shoulder(that she rated as a 6 on the pain scale, this is also new) and the hospice nurse was out to increase her meds. tommrow she will have her blood drawn and we'll see where that goes.
I am sad, I just wish and pray for something anything to make her cancer go away. I would trade places with her in an instant if I could. My heart is so torn, with her in pain and it kills me to see her cry from this horrible disease. I mean enough is enough, cancer has already taken her legs, rib cage area and parts of her head, why wont it just stop already??????? Stop hurting my baby! Im rambling.. its just been a long,tiring, rough day. But hey thats the nature of the beast, I guess thats why you'll NEVER hear anyone say, congratulations you have cancer!
please continue to pray for Kylie and all children, those in hospitals or nursing homes, those who have to work in the stifling heat, those travelling and our soldierswherever they are... with love and respect Amanda Jo
Friday, July 28, 2006 10:29 PM
Thursday, we took an outing to a friends house and Kylie went fishing. she really enjoyed the day... Its nice to get out of the house. We are truly blessed. We are surrounded by alot of love and support in such a caring community. Prior to the pond trip we were visited by Kylies favorite 1st, 2nd and 3rd grade teachers
Today, we ventured into Cleveland for more blood. Today was an emotionaly draining day, it was just long and tiring. Kylies pain is for the most part under control(praise God for zometa)! Now if we just get her anxiety under control, all will be well. Thanks to my mom and dad for taking Jackie for the night,it was a big help and we really appreciate it.
Our Aunt Nan will be flying home tomorrow, please pray for her safe trip. Please continue to pray for all children, people in the hospitals, our soldiers and each other.... with love and respect.Amanda Jo
I have added pictures of our pond outing.
There is a link at the bottom of the page that will lead you to a 24 hour blogathon fundraiser for neuroblastoma starting tomorrow. Kylie's story will be featured during this event along with many other brave neuroblastoma fighting kids. please check it out and support the cause, and add these great kids to your prayer list.. thankyou
Saturday, July 22, 2006 9:41 PM
yesterday was a long, long and I mean long day! We left our home at 8am and we arrived home around 9pm. we left the clinic after 6 and stopped for dinner,Kylie was just "starving". Kylies spirits are good(along with her appetite). we are home, we are safe and all is well.
kylie will have her next blood draw on Wednesday and we'll see where we go from there after we get count results..
Thanks for checking in, I have noticed we are very close to the 30,000 mark on how many times kylie has been checked on. What a great blessing and we truly thankyou for your support ,love and mostly your continued prayers...
please pray for all children,the homeless, your neigbors,people stuck in hospitals or nursing homes, Dr Rawwas and his family and each other ... with love and respect, Amanda Jo
Thursday, July 20, 2006 2:00 PM
All is going ok in the Houtchings Household. Kylie had her blood drawn yesterday and it was a bit low again, so we will be heading into Cleveland tommrow for the graet Zometa and of course blood oh and we need platelets too. Long day tommrow.
Other than that life is going on over here and we are all actually looking forward to a day away, even if it is to the clinic. Well truthfully , we miss those wonderful people and we havent seen them for 2 weeks so it will be like a small family reunion..smile..
Kylie is sleeping a bit more but hey when ya have low blood and such it could make ya tired(in fact im a bit tired myself these day, but when she is awake she is talkative, relatively happy and always hungry.. thats a
good sign.
please pray for our former dr rawwas and his family, they are in lebonan while our dr Rawwas is in Minnesota, pray for all children, our soldiers and each other..with love and respect...Amanda Jo
Monday, July 17, 2006 1:19 PM
All is well in the Houtchings Household. Kylie is doing great, considering the whole cancer thing. We were able to go out on Friday. we went to cold stone creamery in Sandusky for ice cream and of course starbucks for me, SMILE! We then went into Vermillion and went to the a very peaceful spot in Mill Hollow to feed the ducks and took lots of pictures. We even took Buford and we all had a great time, despite the heat.
We had bought fresh bread because Jackie did just as we expected, we handed her a piece of bread after showing her how to toss it to the ducks and of course she ate it and then fed some to Buford sitting next to her. So, Jackie did not feed the ducks but she did feed the dog!
Jackies top tooth is in and she looks oh so cute with all four teeth up there. They grow up so fast. Buford is growing too, he is almost completely housebroken, he is getting pretty good about coming to get us to go out side.. When he goes outside I praise and praise and praise him, I just hope Jackie doesnt start going potty outside after hearing and seeing how well the dog gets loved up!...BIG SMILE! Jackie and Buford are Frick and Frack in this house! Kylie gets a kick out of watching them two together.
Nothing real exciting to report, Kylies pressure sore is about 95% healed and she is getting up more during the day, shes in good spirits and eating and drinking ok. We will most likely go in for Zometa this coming Friday, she is having a little extra pain in her shoulder but nothing that cant be controled. blood will be drawn Wednesday.
pray for all children, all families in hospitals and/or nursing homes, our soldiers and each other.. with love and respect. Amanda Jo
Thursday, July 13, 2006 10:35 PM
Yesterday was a good day. we were able to get Kylie up and outside for a fun art project. She threw darts(great stress relief, I'm sure) at a canvas that had balloons filled with paint tacked on it and she had made a neat little art project to grace our walls. I actually changed the picture album on here, so check it out!
Today she was up again and had her hair washed, she enjoyed the nice little mini- massage I gave her.
We will not be going into Cleveland tommrow. We have decided that her counts are good this week but she most likely will need both blood and platelets next week so we'll get her zometa(for pain) then. Her pain is realatively under control, so we feel she will be ok for an extra week with out the zometa.. oh but believe me she will get it next week for sure.
Instead we have decided to go on an outing instead, we are escaping the house! we arent going far but we are going and that in itself is a great blessing.... hopefully we'll get some more pictures.... Thanks to our dear friends for loaning us use of their van....
pray for all children everywhere...with love and respect Amanda Jo
Tuesday, July 11, 2006 10:30 PM
sorry for a late update. things are going ok in the Houtchings household.
our weekend was full of visitors and alot of blessings including steak dinners and garden delights with a couple of lunchables(pizza) for miss Kylie. Thankyou so much to our wonderful supportive community. what a blessing. God is good to us in spite of the circumstances. James parents stopped by and gave James and I a much needed reprieve. we got to go to walmart and pick up some staples needed here at home.Tonight I just got done scrapbooking and chatting with a good friend.
Kylie is still relatively comfortable, she did have some pretty intence pain this morning but the hospice nurse came out and upped her pump and she is back to ok again. her pressure sore is looking better, as we have been working dilgently to keep it under control. Kylie can now lay on her left side, due to lack of feeling so thats another position for her to lay in. we will most likely be going up to the clinic on Friday for her much needed Zometa and/or platelets
we had her up in her chair the other day for a little while, and even managed to take her outside for a walk to get the mail.. her spirits are still high and she is going strong(despite the cancer slowly taking her over) I am so amazed by her and its times like these ,when i can actually FEEL her strenth. Her strenth and determination keeps my faith going strong. I thank God everyday for both my girls, my wonderful husband and the great family and friends that surround us.
currently, kylie is talking about what shes thinking about getting Jackie for her 1st birthday next month. I cant believe that Jackie will be 1 year old next month where has the time gone. Kylie is 10 and Jackie will be 1 and as kylie likes to point out at the end of the year i will be 30. Kylie thinks its neat that we all have major milestone birthdays this year. one,ten and thirty....we all get a laugh, because daddy is the odd man out(literally with 3 girls) he'll be 29 the day ater Jackie.
Always pray! pray for those traveling, those in hospitals and nursing homes,and our soldiers. with love and respect Amanda Jo
Friday, July 7, 2006 8:43 PM
Sorry about the lack of updates. There isnt alot to report. things are pretty stable around here.
kylie has been comfortable,pain wise. she sits up for a couple hours a day. shes eating and drinking fairly well. her big thing is cereal right now, coco pebbles, frosted mini wheats. lately here she has been craving a pizza lunchable.
We havent had many oppurtunities to get out much but we are managing ok... Jackie and I take walks to get the mail, James runs up to the store here and there to pick things up or we play rock, paper, scissors to see who gets to go....(good thing is we are definatly saving on gas..smile) we are keeping our humor up..... I have been working on my book like crazy and its going really well, its hard to go back and think about some things but somewhat easy at the same time... I have so many wonderful memories to share and even some not so wonderful memories. Kylies story really is an inspiring one, thats for sure...
Jackie is still not walking but working on it, right now shes cutting a mouthful of more teeth (she already has 5 and 1/2) so shes been a bit under the weather.
Kylie will have her blood drawn again wednesday and we will most likely go to the clinic that friday because she is due for her zometa... her pressure sore is healing somewhat and we are on top of that. we are doing some excercises to her legs to prevent contractures( nothing major just small movements) and we change her position every few hours.
pray for all families in the hospitals, your neighbors, your freinds, those traveling and our soldiers... with love and respect, Amanda Jo
Wednesday, July 5, 2006 5:29 PM
Today was a better day for me. Kylie had her blood drawn and we dont have to head to the clinic this week(praise God) her blood was 10.3 and her platelets were 40(low, but no transfusion nessary). Needless to say Kylie is, at this point holding her own. Pain is controlled to a point, and she rests comfortably(even if she does sleep 15-20 hours a day). We change her positions at least every couple of hours to avoid pressure sores(she already has one but its being well taken care of) she is eating and drinking well.....
I have turned some of my anger into creativity and have been writing up a storm... I have been jotting down so many wonderful stories and captions, even some not so wonderful stories(with all the good came bad to).. Now just have to put it all together........ My goal is to have this book finished(and hopefully on the raod to being published) by Kylies next birthday.
Jackie is not yet walking but since she had taken her first step, she is getting braver by the minute.. Today however she is a bit under the weather, with a small fever. I assume she is cutting more teeth, no ear redness or anything to report, could just be a cold too, we'll see how she is tommrow.
pray for all children,sick or otherwise.. with love and respect, Amanda jo
Thankyou so much for all the uplifting guestbook entries, we all enjoy reading them and it means alot to us... God bless
Monday, July 3, 2006 7:12 PM
Today was sad for me, its started out ok until about noonish a little girl called, it was a very goood friend of Kylies and she had ever so sweetly(and innocently) asked if Kylie could come over later to go swimming... my heart sank. I asked to speak to her mother and I had to tell this woman the reality of the situation that Kylie couldnt walk, or feel her lower half, much less go swimming. The reality is, my once independant little girl, is now completely dependant on us for everything.
It doesnt seem very fair, we should be doing fun things right now like swimming,camping,hiking, fishing and going for bike rides. Kylie has a beautiful bike. It hurts so much to know that she'll probaly never ride it again. I know life isnt fair and thats just the way it is but, that doesnt make the pill any easier to swallow. I cant even tell Kylie that this little girl called because it would make her sad. Kylie already is sad, she knows she cant do anything.
This isnt the first instance that this has happened, a couple weeks ago a couple neigborhood kids came over and wanted to know if Kylie could come out and play. I told them she wasnt feeling well, and left it that...
I am going through another angry stage.. I'll leave it at that...
Kylies pain in lower half is somewhat controled for lack of feeling. Now there is pain in her shoulder and rib area and its evident to us because we see and feel it....
Please pray for us, anyone else going through something similar,all children everywhere, all people in hospitals and nursing homes, our soldiers and each other..... with love and respect.. Amanda Jo
Saturday, July 1, 2006 4:45 PM CDT
All went ok yesterday at the clinic. Kylie recieved 2 units of blood and a new port needle, we were there all day.
Its been rough over here but good. Kylie has very little pain these days, except when we have to move her. we have to move her to a diffrent position every 2 hours, she has been getting small(very small)pressure sores. we are on top of it with protective creams and cushions, no worries!
Kylie has lost all feeling to her lower half (sadly this includes bathroom functions) and is for the most part, bed bound.. We do try and get her up in her chair at least once a day for an hour or so.. her vitals are great and her cancer at this point seems to be mostly skeletal and joints(hips, knees, shoulders, rib cage area, lower spine area)...
She is doing amazingly well and considering all, we are very blessed......
continue to pray for kylie, all children, people traveling, our soldiers and all in the hospital...with love and respect, Amanda Jo
Friday, June 30, 2006 8:25 AM
will update more later.
Things are as ok as they are gonna be here. Kylie is way more comfortable in her new bed and it looks quite stylish in the living room, Carebear sheets go well with the decore'... smile!
Her blood was drawn on Wednesday and her blood level is back down to what it was before she had the blood last friday(7.6) normal being 10-12...
So, we have arranged for a the van again and are off to the clinic again for blood...
Kylie is feeling ok(zometa is definately worth the trip in, it due again in a couple of weeks)...
will update alot more later must get ready to go.... Pray for all.. with love and respect.Amanda Jo
Monday, June 26, 2006 11:21 AM
Things are going as ok as they can go right now.. We have decided to get a hospital bed. Its getting harder and harder to move her. We feel this might make things easier on her. Kylies Shoulder is now bothering her, she also has edema in her feet and a late radiation burn on her left Knee(with blister). Our living room is slowly starting to turn into a hospital room. Thats ok though because as long as kylie is comfortable....
We are pretty much homebound now because Kylie needs 2 people here with her and she only wants her daddy to be the one picking her up. She will let other people help in moving her around somewhat but only her daddy can pick her up right..
Kylie is having some bathroom issues but nothing we cant handle... she is staying strong! On Saturday she ate a steak,yes Steak, while we ate hamburgers and hotdogs, Kylie ate steak. SMILE.... thats ok, at least she ate, and at this point if she wanted the most expensive hard to find meal, you bet we'd find it for her.
Other than that, things are going ok in the Houtchings household.... Great news, Jackie took her first step yesterday afternoon!!!
thankyou for all your love and support and keep praying.... for everyone all the time...... with love and respect, Amanda Jo
P.S. I have came up with a name for my book... Day by Day and Prayer by Prayer(a childs journey with cancer) I have begun writing at night when I cant sleep and I will be adding Kylies journal pages as I go along..... I am also gonna have a notebook to carry as things come to me I can write them down.
Friday, June 23, 2006 10:03 PM
Today wasnt nearly as long as expected. Thanks to the timely and efficiant staff of the Cleveland clinic...I'll back up....
Our day started at 7am, we woke up prepared Kylie by placing her on the potty chair and then into her wheelchair. our good friend arrived shortly before 8 to drive us into Cleveland (thankyou Rodney). the ride went smoothly(as smooth as it can in a van). Kylie did well on the ride in. We arrived at the clinic around 9am. We did have to move Kylie quite a few times more than we expected (bathroom issues), but inspite of that, all went well. We managed to stay a step ahead of her pain and for the most part kept it in check (what a blessing!).. She recieved all her infusions in a timely matter(good job Rita!) and only had a couple of chaotic moments (thanks to the frog in my pocket I handled those moments rather well myself, thanks Cookie) and then they took her port needle out and replaced it with a new one, hooked her pump back up and we were off. We arrived home to dinner and it was good(thanks Christine). I went later on picked up Jackie from mamaw and papaws house( thanks for keeping her and letting me cry a little)... Sometimes I feel like we are alone in this battle and then God shows us otherwise, for that we are greatful.......
Kylie is looking and feeling decent right now. shes been sitting up and eating some. She is for sure a real fighter! She inspires me, so on the advice of a good friend, I along (with my wonderful husbands help) am going to right a book from all my journal entries and our experiences. We are going to right this book for many reasons. One I would like to bring awareness to childhood cancer. I want to share Kylies journey and some of the wonderful(and not so wonderful) things we have learned along the way. My hopes are that by writing this book we will be able to help some family maybe not be so scared. day by day and prayer by prayer
please pray all the time and always believe.. with love and respect Amanda Jo P.S Cookie, if I keep it up, Im gonna rub that frog clear...SMILE
Thursday, June 22, 2006 6:19 AM
Just a quick update. A great friend of ours has gained access to a wheelchair van. All is a go for tomorrow for mission Cleveland/kylie/trip! We will be leaving(8 at earliest) and most likely spending all day at the clinic. Recieving fluid, zometa, platelets and then blood, in that order. thats at least 7 hours of transfusions alone, not counting wait time, getting set up, waiting on blood draws and waiting for pharmacy to send the iv bags. Not to mention the drive in and drive home(45 mins to an hour each way, traffic depending). My best guess is at least a 12-15 hour day........ Thats only if things go smoothly, meaning everything is in order, computers, pharmacy and labs are running on time, etc.
Kylie is actualy looking forward to the trip. thats a good thing but, Im sure, its because shes sick of looking at these walls and same old, same old.....
her pain is being managed and well controlled at this point..... We hope and pray the zometa kicks in rather quickly.... We do believe, there is a possibility that the tumor in Kylies hip is pushing into her lumbar spine area and that may be why she cant feel her legs well enough to move them(thinking it could be hitting or on a nerve). We dont really know this for a fact because we arent scanning but, knowing this disease and living with and watching Kylie, unfortuanately we are getting rather well at figuring and determining these things.
please pray zometa works fast, that our ride in to Cleveland and back goes well,all those traveling, stuck in hospitals and/or Ronald Mcdonald Houses, our soldiers and those affected by the storms that passed through yesterday and last night.. with love and respect Amanda Jo
Wednesday, June 21, 2006 9:51 AM
I guess I spoke to soon in saying that are clinic days are over.... Our nurse came out and drew blood for Kylies counts, Kylie needs blood and platelets. (I was hoping there was a way to recieve blood products at home, but no such luck) At first we thought well maybe Kylie can go via ambulance-non emergent to cleveland and then we can be admitted for a night while she receives blood products and her much needed Zometa(bone pain fixer).. Well things dont work that way.. So, an ambulance most likely will not happen ,which is fine, we just need to get our ducks in a row and figure out whats next...... our next option is to somehow manage a car ride and just go clinic and not admit. Not sure right this moment on plan but God will help us figure it all out, Im sure!
Kylie is doing ok we are managing her pain, the best that we can. It just really hurts her to move. We are all ok and hanging in there....
Not to embarass Kylie, but after 8 days she has went to the bathroom and is feeling quite a bit relieved!
Please continue to pray for Kylie and all children healthy or otherwise. Pray for our soldiers and those traveling........ with love and respect amanda Jo
Monday, June 19, 2006 9:07 AM
I didnt get a chance to update yesterday... Happy fathers day James.. your a great dad to both our girls, we love you lots and lots and lots............
Things are getting a little harder over here. Kylie can no longer walk at all. She has no strenth in her legs to even stand. We cant move her without putting her in lots of pain(despite the pump).. today we were supposed to go the clinic but that just isnt gonna happen, I'm afraid our clinic days are pretty much over. We just cant get into the chair, then in the car then back in the chair again, Its just to stressful... for all of us.... so we are currently working on a plan to get things done(like platelets and/or blood, or her zometa) done here at home(we dont really know if it can be done but nothing is impossible).... Day by day, prayer by prayer...............
Thankyou so much to everyone that prayed on Sat at 6, thankyou to everyone who continue to pray.. we really appreciate it... with love and respect Amanda jo
Friday, June 16, 2006 11:44 PM
Well things are ok here in the Houtchings Household...Sad but OK.......
First let me say Kylie did do radiation to her knee on Friday. Thankyou for all the prayers that helped guide her to that choice... radiation will not fix her knee, but will mostly provide some relief for at least a few days.
We also made a tough decsion, we felt it best to switch Kylie from oral pain meds to continuous IV morphine drip. A pump that is small, she can take it with her and the bag lasts several days with a button to push for extra doses if needed. She can still take things orally and she is still eating and drinking. James and I, Thought and prayed about this and just felt it best to go pump route to control her pain better(and so far it is). She was hooked up today at around 2;30 and so far has only used the button twice and for the most part is comfortable...
Unfortuanatly, Kylie can no longer walk. the tumor in her knee has gotten to be to much on her, as also her left hip, both thighs and right ankle have increased in size. Her knee that was measured 2 weeks ago at 30cm is now 32cm. Things are not looking the best right now... We are not with out hope!!! Which brings me to a special request....
Tomorrow (Saturday) at 6pm Ohio time The Houtchings family and friends are requesting prayer.... Pray that Kylies platelets come up on thier own soon(very soon)... If for just a moment at 6 o'clock everyone who knows and loves Kylie could just say a quick prayer for her platelets to come up and for strenth, we would be forever grateful.....
thankyou ever so much........ with love and respect Amanda Jo
Wednesday, June 14, 2006 8:01 PM CDT
Our next appointment is tommrow. We have convinced Kylie to maybe do another big blast of radiation to her left knee(now the the size of a football).. She is a bit apprehensive due to the relief will only be for a short time. I have explained that even temporary relief from pain is better than no relief...
Last night was extremely painful for Kylie... we were able to once again go up on all her meds.. She seems to be in control now.... My heart was so broken last night. I hate seeing her in any kind of pain and knowing that no matter what, I could not ease her pain. All I could do was pray as I handed my crying child more pills..
There are 3 big things that we ask when you pray for Kylie. 1)please pray for her pain to minimize and /or go away completely. 2) please pray that Kylie will decide to do radiation and that it does help relieve pain.and 3) please pray for her platelets to come up on thier own to maybe, just maybe, make her eligble for some kind of treatment options.... please pray for these things in that order... her pain to go away is the most important!!!
For anyone interested in donating to Alexs Lemonade stand in Kylies honor may do so online (link at bottom of page) please considering supporting this great cause and help fund a cure....
please pray for all those traveling, our soldiers(where ever they may be), your neighbors and each other, please pray for the families stuck in hospitals and/or ronald mcdonald houses, always pray..... with love and respect, Amanda Jo
P.S i will have pictures posted soon, I ordered a program and as soon as i get the hang of it. i hope to start posting more pictures soon.... please be patient.. thanks
Saturday, June 10, 2006 2:03 PM
We did it!!!! total raised at stand today was $2000.00 even... Praise GOD!!!! not counting online donations, to make a donation to Alexs stand in Kylies honor please visit http://www.firstgiving.com/forkylie
Thankyou everyone for your great support!! will update later with more details and pictures.... with love and respect Amanda Jo
Ok as promised a full update on Friday and todays events.....
First off we went to clinic Friday morning and much to my chagrin Miss Kylie recieved blood and it was a long day.. We also found out that a new study will be open soon at the clinic but most likely, Kylie will not be eligible due to her platelet count not being high enough The study needs 75 and kylies dropped from 65 to 55,(please pray her confused platelets start to come up instead of go down). So with that being said Our medical options just arent there! There really is nothing left to do.... Sad, we are very sad but we still(and always will) believe in the power of prayer!!
Anyway...As saturday approached I found myself desperate to do something, and that maybe just maybe all these stands this year will happen to fund the research that soon(real soon) becomes the cure!!!
Anyway, We woke up bright and early and headed into town to set up.(this year we were actually organized enough to load up the night before). We set up and we have a great turn out. The weather stayed nice and everyone was in great spirits. Kylie poured all the lemonade her self (11 gallons worth) I was so proud of her, she was comfortable the whole time and only started getting tired as things winded down.... Thats one of the many reasons Kylie just amazes me, she is so strong and very determined.. My hero for sure! Many wonderful people stopped out and gave thier support, including friends from cleveland, Kylies principle and teachers, even the dj from her birthday party came out. Kylie is truly loved and it showed today while she was surrounded by friends, family and community.. God bless you all and thankyou so much for everything!
Always pray, with love and respect, Amanda Jo
Tuesday, June 6, 2006 8:02 PM
All is well in the Houtchings household. Kylie went to the clinic on monday and her vitals are great, lungs clear and so on and so on. her counts have actualy came up a little bit and it looks like Kylie is holding her own... (big praise God ,on that one and many a things!)
Well the bad news is her head tumor appears to be coming back. So far no complaints of headaches or double vision... Kylie has actually been in good spirits the past few days, Its amazing what a 15 hour nap can do for ya...smile
James and I are about to really examine somethings and make some decisions regardings Kylies care and treatment options. Im not going to go into alot of detail because I dont want to get myself (or anyone else for that matter) to excited only to have our hopes dashed. I am seeking prayers on making the best decision FOR Kylie not to her..
Please join us for Kylies 3rd annual Alexs Lemonade stand in the wakeman community park right on rt 20. Saturday June 10th from 10am till 1 Pm or whenever Kylie is done..... What a great cause to support!
If you cant make our stand ,there will be a stand June 9th at the Fremont Wal*Mart from 11:00am - 3:00pm and
June 10th at the Norwalk Wal*Mart from 11:00am - 3:00am in honor of another little cancer fighter from Ohio, Christi Thomas..... Or, To find a stand near you, please go to the site (Link below) and check out the calender section......
Something I dont write on here often enough.THANKYOU to our family members,friends, the Wakeman Community, Western Reserve school, The prayer warriors, and everyone who keeps up with Kylie and her Journey.. We very much so appreciate it all......... always pray, with love and respect Amanda Jo
Saturday, June 3, 2006 12:49 AM
Yesterday we went to the clinic, where Kylie recieved her zometa(for bone pain) and DID NOT recieve blood. Her blood count did drop, but it wasnt very significant and since she seemed fine energy and color wise,we felt it best to hold off. She will however most likely get blood on Monday. All her counts are on the down ward trend but at the same time seem to be holding somewhat steady(if that makes any sense). She also got to see her good friend Kevin while there and she enjoyed their visit.
After clinic yesterday, we came home cooked dinner and then went back to Cleveland for a special zoo night for the clinic kids, we also met up with our wonderful nurse Holly and her daughter. It turned out very nice and Kylie enjoyed herself with holding a bird and getting her face painted. Since it was just area hospital kids ,it was very relaxed and not crowded. Jackie enjoyed herself in the backpack on Daddys shoulders.
This morning Kylie did wake up with some knee pain and did get a breakthrough pill, she is now sleeping quite comfortably. Im hoping that she only had this pain as a result of all the extra activity yesterday and it wont become a pattern requiring her meds to be bumped up again. Hopefully the zometa will starting kicking in and helping soon.
I am somewhat emotionally drained, yesterday I noticed Kylies eye thing is starting to return. After hearing Kylie say the other day that her right ankle was starting to tingle, James just built and put in a ramp(just another physical reminder).. although The dog really likes the ramp...Smile....
Please consider supporting Kylies 3rd annual Alexs Lemonade Stand this year. these kids need a cure..... yesterday!... If you can not make it to Kylies stand please look on the website calender(link below) and find a stand near you or donate through the site.... Our stand will be held on Saturday June 10th at the Wakeman Community park right on SR 20 in the center of Wakeman. We will also be holding a 50/50 raffle(tickets on sale now,you can email me for details) Kylies goal is to raise 1500 dollars or more.. We did not have the pleasure of meeting Alex, but we did have the honor of meeting her mom during one of Kylies MIBG treatments at CHOP. She was very nice and even brought Kylie some gifts.
please pray for Kylie to feel well enough to attend her stand ,your neighbors,our soldiers and everyone you meet..with love and respect, Amanda Jo
Tuesday, May 30, 2006 8:49 PM
Today we went to the clinic for our count check, and her counts are dropping. This means that the neuroblastoma has most likely gained entry into her bone marrow... I guess we'll never really know for sure, because we arent gonna put Kylie through the test to find out, but this is most likely the explanation for her counts dropping... I think on this particular subject, my world, (world of denial, clear since '03) is a better place to be, so I think thats where I'm gonna stay!
We did some measurements of her knees and her right sorta NORMAL knee is 28.5cm and her left knee with the tumor is 30.5cm. Her pain meds have been increased again and its just one painful day at a time(Lord, whenever your ready for that miracle,we are patiently waiting) To give an over view of whats happening now here are her counts....
Hemoglobin(blood) normal being 11.5 to 15.5
last week 9.2 this week 8.4 Kylie is most likely on her way to becoming transfusion dependent. Kylies blood type is A positive.
Platelets normal being 150 to 400
last week 80 this week 68
what does all this mean? you ask... well it means LA La La I'm back in denial world.............Other than all that,everything else is fine. Our next appt is Friday, where we will most likely get her zometa(for bone pain) and blood. It will be a long day ahead of us.....Hey Tiffany from starbucks have my drink ready and keep em coming!(smile)
Yesterday our wonderful nurse practioner from the Cleveland Clinic drove all the way out here(and got lost, smile) just to see us and show Kylie her puppies a beautiful dalmation and a quirky, cute labadoodle. What a blessing, to not only having a wonderful nurse taking care of our daughter, but a great friend taking care of us all.. We love you lots Holly!
In spite of our most recent bad news, our faith is just as strong as it ever was and we are not without hope...
just pray for whomever is in your heart... with love and respect Amanda Jo
P.S dont forget Kylies 3rd annual- Alexs lemonade stand will be held at the Wakeman park in the center of town on Saturday June 10th from 10am till whenever. along with a fifty/fifty raffle.. please consider joining us for a great cause! Please pray that Kylie will be feeling well enough to attend. Our goal is 1500.00 dollars... if you cant make it consider going to the website and donating through there... thanks a million God Bless
Sunday, May 28, 2006 9:02 AM
Its been a pretty good weekend. We had a power outage from the storms and that left the lights out at my husbands work so, he got an extra day for the long weekend... everyone is doing pretty good in the Houtchings household.
Kylie has been having some breakthrough pain but so far nothing that is to hard to control. We just went up on her meds AGAIN!(I hate this!) Shes been in so-so spirits this weekend.... Our next appointment in Cleveland is this coming Tuesday for count checks, her zometa(for bone pain) and a little talk with her drs....
We do have exciting news regarding Kylies upcoming 3rd annual Alexs Lemonade Stand. We have a Date, place and time! at kylies first stand we raised over 900 dollars and our second we raised over 450 so, this year we have decided to combine the 2 and set the goal this year at 1500.00. We are also setting up a 50/50(tickets on sale now, email or call me for details) I believe we can do it.... Its such a wonderful cause, even if we only raise 100 dollars thats 100 dollars closer to littles Alexs family's goal of 6 million and 100 dollars closer to finding and funding a cure... (check out the link below for a great story and cause)
Our Stand and raffle drawing will be held on SATURDAY JUNE 10,2006 at THE WAKEMAN PARK(right smack dab in the center of town on RT 20) from 10 AM till whenever Kylies done Serving up lemonade...
This Stand this year will be held in Honor of Kylie and all other pediatric cancer patients fighting so hard, and in loving memory Of the 8 year old founder Alex Scott and of the many(sadly) who did not survive the fight....
pray for your neighbors, friends, families ,ourselves,and also our soldiers. pray for those stuck in hospitals. please pray for Gracies family, with love and respect Amanda Jo
Thursday, May 25, 2006 8:30 AM
Yesterday we went to the clinic. Kylies counts have started to drop, we are not 100 percent why.. Could be she has a bug that shes fighting off with what little immune system she does have.Or , she could have disease in her bone marrow.. I think I will forever deny the latter and say its a bug!.. Other than that Kylie slept while she was being being examined and then we we went home..
Kylie woke up around 7 or so and was in great spirits she played with her Aunt Melissa,joked and Laughed!
While at the clinic,I had the honor of seeing our little friend gracie and her mother Dawn. We talked a bit,and well it was bit emotional because Gracie is such a great kid and seeing her was a bit hard for me but not nearly as hard for me as it must be for Dawn........
At around 2am this morning Gracie passed away.. Please pray for this family.............. With Love and respect Amanda Jo
Sunday, May 21, 2006 9:07 PM
The weekend went well, Things have been fairly normal for the houtchings household.
We had to up Kylies meds AGAIN, but she is now comfortable.On Wednesday and Thursday, she was in ALOT of pain and it seemed like she ws taking meds for breakthrough more than ever, so we gave her more of her controlled release stuff and all is seems to be ok. Although Kylie wants to sleep 20 out of 24 hours a day, at least she is not in pain,or irritable. Her Knee is really bad it looks like someone put one of those water wings around her knee. It breaks my heart to actually see the disease present itself. Her knee being so abnormal is very stressful on Kylie to walk so she now has a walker to help her get around the house.(I wish they didnt have to even make child size walkers). The walker does help her get around alot better, so thats a good thing. Hopefuly she'll be able to use the walker for a while, as long as her other knee,shoulder and wrist dont start to hurt.(cancer sucks!) well anyway, its been a nice weekend, its been a real blessing to just relax. Our next appointment is wednesday for counts and just a check up. Hopefully, something will make itself available soon , that we can try. We can only pray! Until then we'll just continue to do what we are doing,doing nothing, praying for something.(lord hear our prayers!)
pray for your neigbors, friends ,families,our soldiers,those stuck in hospitals and our little friend Gracie from the clinic...with love and respect, Amanda Jo
Tuesday, May 16, 2006 9:17 AM
Good morning!
Today we are headed out to have our family pictures taken. They should turn out pretty nice, since we are all gonna somewhat cordinate with Kylies favorite color.(you guessed it purple..smile)
Yesterday we got some pretty cool news! One of Kylies teachers stopped by and delivered some good news. Kylie has missed alot of school here recently but was able to attend school and take her 3rd grade profiencys and guess what..... she scored advanced in math AND reading!! (I knew she was a genius..SMILE!!)I wonder if Harvard has a veternarian school? Thankyou God for a wonderful blessing!Jackie will be attending Yale and Kylie, Harvard(depending)...Smile Thankyou Mrs Kovach for delivering such good news and dinner!!
Kylie has been having breakthrough pain again, so her meds were once again takin up a dosage. Her left knee still hurts along with her left wrist and she just informed me her left hip is starting to "act up". At least she is being consistant with the left side....She has been sleeping more, but on a good note when she is awake she is in a pleasnt mood and tries to be as active as she can.(I'm gonna need a magnetic wall soon for all the art work, I'm not sure the refrigerater will hold..smile)
Jackie is trying so hard to walk(Lord help us). She is attemping to stand on her own and, Oh My, she is trying to climb already.. Kylie is a bit perplexed by the activity of her little sister. "Mommy get her, shes going in my room!" is already starting to ring out in our household.... Thankyou Lord for such wonderful blessings.
I was sitting on my wonderful porch last night, just thinking and you know God has given me way more than I deserve. My life was Never promised to be perfect but it is... My life is perfect with imperfections.... I have my moments of sadness but I have many more moments of joy. Its all a gift! the Good and the bad is a gift. The Lord didnt even have to give me breath,let alone 2 beautiful children,a great husband, friends, family, pets and a home to share with them all....
please pray for all those around us, our friends ,our family,ourselves. All those in hospitals and nursing homes,and our soldiers(wherever they may be). also an extra prayer for Our little friend Gracie from the clinic...with love and respect Amanda Jo
Sunday, May 14, 2006 11:30 PM
I hope everyone had a nice mothers day. Today was a pretty good day but in alot of ways sad for me. I tried to be happy today because I have been blessed with two beautiful children but part of me was sad because it may be my last mothers day with Kylie and it just doesnt seem fair. Alas life was never promised to be fair or perfect..
Kylie has been having more breakthrough pain here lately, this time in her wrist, oh her knee still hurts too.
I'll be honest the last week or so has been catching up to me on the emotional level. I can laugh, cry, be angry and be joyful all in a matter of moments... I love Kylie sooo much and to see her going through any of this just tears me up. Her personality is changing and sometimes I can see the fight just leave right out of her and other times its like shes fighting so hard.....Its so weird sometimes for me because I am watching one daughter growing into life, and life growing out of my other daughter. The whole thing scares the hell out of me!!
I dont mean to make this entry so sad, its just I feel the need to let some of this out. I havent exactly been easy to live with these past few days, I feel like I'm dragging everyone around me down. tomorrow will be better! Thankyou James for being so supportive and even though its mothers day your a great daddy!!!
pray for our little friend from the clinic Gracie, pray for Kylies pain to once again be under control, pray your neighbors,anyone in the hospital, and our soldiers.. with love and respect Amanda Jo ps. in the last 3 and a half years we have lost a few clinic friends so please throw an extra prayer out for those mothers and families.
Friday, May 12, 2006 6:40 PM
Today was a pretty good day. Kylie did have some small break through pain but nothing that was horrible. Her left Knee is starting to act up again(I hate this).. Last night she had her friend Kristen spend the night and acompany her to clinic today... Her counts where really good. Her white count was once again elevated but thats mostly likely the effect of one her many meds shes on....
Kylies attitude has been easing up some. she seems to be taking things in stride now so thats always a good thing.
Our cats and new pup are all doing well. Sorry I havent posted pictures yet but the program I use to shrink them is temporaily out of service.... Promise to post new pictures ASAP!
Anyway all is going well in the Houtchings household...Kylie has been sleeping more lately but thats to be expected and when shes sleeping that means no pain and thats really a good thing!
One of our little friends from clinic received some bad news this past monday. They found tumors in her skull and she is undergoing radiation to help relieve pressure and sadly,this is an all to familiar road, after this they have little to no options left. Please lift little Gracie and her family up in prayers, They need alot of support and encouragement right now. (Dawn, I hope you dont mind my posting this,we just love you guys and if you need me, for ANYTHING, please dont hesitate to call)
pray for your neighbors, your friends,your family and each other. pray for all those in hospitals. with love and respect. Amanda Jo
P.S. Happy soon to be Mothers day!
Saturday, May 6, 2006 10:09 PM
Today has been a blessed day...
Kylie is done with radiation and we are off till friday. Friday will just be a check up and labs and its scary but nice all rolled together. Scary because we arent doing treatment knowing she still has cancer, but there is no more treatment left other than super harmful, quality of life zapping treatments....nice because we can enjoy her at home in our own surroundings.. its really an adjusment but not with out hope that something could come along. theres always room for miracles....
Today we did a good thing, we "payed it forward" some good friends and ourselves gave some of our time, got up early and made pancakes and sausages for the people at the ronald mcdonald house in cleveland. It was a cool experience that I hope to do again. The Ronald Mcdonald house does alot for families in crisis and need of shelter and we have been one of those families. In Cleveland , New York,Philly,Texas and Maryland. Without places like this alot of families would have it even rougher. what a true blessing. When your worried about a child with a possible heart condition or like us cancer treatments,its nice to know that there are places willing to to take at least the shelter part off your mind. Thankyou Christine, Rodney Alyssa and Gail for sharing your time...
Our weekend gets better, now that Kylies meds have been once again fixed,she is comfortable and in good spirits. We havent had ANY breakthrough pain in Two whole days... Our family from Indiana came in and we were blessed to have a visit from our "out of town pastor". Kylie even attempted to wrestle with one of her fav. cousins(well she sat on him anyway) life has been pretty good us(even though its scary) God is with us every step of the way!!
The best news of all, we made Kylies day, we completely suprised her with a new addition to the family.. A beautiful (so ugly hes cute) little pure breed 9 week old pug... Yep we now have a dog! and we all just love him so much already. His name is Buford Cowboy Houtchings. Dont laugh thats his name.. smile... So we have Little Bear Branch- Houtchings, Gweneveer myladycat houtchings and now Buford.. Kylie just loves him and he was getting her face and she just laughed and laughed(havent heard her really laugh like that in weeks). Jackie, well shes loves Buford too-from a distance.....smile but in time... Little bear and Gwen have actually taken to him Quite well............
Please pray for your neighbors ,each other, all families stuck in the hospitals,please continue to pray for Kylies relief from pain to last,and our soldiers.. with love and respect Amanda Jo.. P.S Thankyou all for keeping up with kylies journey and for all the prayers and well wishes!!
Thursday, May 4, 2006 9:58 AM
Yesterday started pretty early witha vist from our home health nurse. We have bumped up and added to Kylies pill regiman. Now both her knees and her one ankle hurt. shortly after the nurse left, Kylie had an "episode"(no one is sure as to what it really was), she just fell over! Kylie was sitting at the table and , she wasnt reaching or leaning or anything,she just fell over! Needless to say right after radiation, I took her over to the clinic. could have been a VERY small, mild form of seizure or could have been something known as TIA(need to research that term myself) regardless of what the episode was, I'm just praying it doesnt happen again.
Today Kylies Aunt Melissa is taking her to radiation, I have another appointment... Tommorow will be a long day. Kylie has radiation at noon and then again at 5! then we are done with radiation. (its a little scary)Im not sure whats next. Being done with treatment and all is scary, knowing that she still has cancer and every day it seems something else is aching.....
please continue to pray for comfort and peace for Kylie, your neighbors, our soldiers, those going through rough circumstances and those families stuck in hospitals.. with love and respect Amanda Jo
Tuesday, May 2, 2006 9:37 AM
Whew! what a week and its only Tuesday! here shortly we are off to yet another radaiation appt. According to the schedule we go until monday(uck!)oh well, whats a few more trips to the the place we call our second home!
Kylies counts were checked yesterday and all was great! her white blood count was a little higher than normal but,they attributed that to one of her meds...
She is on a schedule of control release tablets for pain and if it hurts in between doses, she can get a break through pill. Well her breakthrough is getter harder and harder to control. Now ,just today her ankle is starting to bother her. I hate this, I hate the fact that I cant help her. Her walking is getting worse and worse, last night she crawled to the bathroom. Im afraid shes not going to be able to walk at all soon.. Her Knee is terribly swollen, I wanna believe its swollen from radiation but that was over a week ago so my heart says her cancer has grown through radiation..... My heart is breaking
pray for kylies pain to decrease, pray for your neighbors pray for all those around.. with love and respect amanda jo
Sunday, April 30, 2006 2:44 PM
Today I have TWO sick babies. Kylie is not feeling the greatest and Jackie has a bit of a cold and is somewhat cranky herself,she sounds conjested.
This weekend Kylie has had a bit more breakthrough pain than anticipated and its probaly time to get her meds adjusted(I just got it straightned out).We'll get that done tommorow, while we are at her radaition appt. This will be her last week of radaition to her head areas.
Yesterday, Kylie was quite pleasant when she woke up in the morning. Then after her afternoon nap she woke up with all claws and teeth beared! Nobody did anything right including Jackie and another small child we had over visiting.... She was VERY angry and it was pretty intense!! I have a real good idea where the sudden anger came from. After a while she calmed down a little and just became a little snippy.... Me and Daddy had to have a chat with her. Tommorow, I was thinking of having her talk to the social worker, just to check in on and make sure shes ok(as ok as she can be)in the emotions dept.
Other than that our weekend has gone well.
Please pray for Kylies anger to tone down alot, pray for your neighbors, our soldiers, all families stuck in hospitals..... with love and respect Amanda Jo
Tuesday, April 25, 2006 1:05 PM
Home Sweet Home! back to reality............
Today we are at the clinic and all is ok. We are recieving something called zometa for bone pain and such.. we are gonna be talking with the drs about an at home chemo. Her arm is starting to hurt now. No other pain to speak of(we have gotten all her meds under control,as to proper strenths and dosages) and her bathroom issues have been resolved. Now please pray Kylie will eat plenty of tums,(since zometa tends to mess with her calcium levels and tums seems to keep her steady, but she HATES them!) Kylie is still on a rampage, she has been holding nothing back, shes been pretty good about telling people what she thinks and in some cases where they can go....(she is going through the angry stage, and she has every right to be angry, cant say I blame her, Im angry too)
We had an excellent time at the beach. Kylie is already planning our next vacation! I will be posting pictures soon. We did alot and saw alot and still managed to relax. We have been blessed to be able to spend this time together, as a family, with no hassles or headaches... GOD is good!! Even the drive down and back was uneventful....... Jackie and Kylie did great for the long drive down and back(they slept!!..smile)... Of course, we found a Starbucks, so that kept me happy! Once I get the pictures posted I'll write more about the diffrent things we did and saw...
please pray for your neighbors, our soldiers,(wherever they are), pray for all those traveling.... with love and respect, Amanda Jo
Monday, April 17, 2006 9:50 AM
We had a nice Easter. Kylie ws a bit out of it because of all her medications but, we all still had a nice quite dinner at home.... It was a nice blessing to just all be together and relax.
Today, we will be heading off to the clinic for more radiation to her eye area. We will also(hopefully throw in a round to her knee, today and tommorow. Then we are off to the beach! We are gonna be having her counts checked today, and her "tank filled" if needed(meaning if she needs blood, platelets or fluids). We figure if we get this done today then when we leave on Wednesday, all will be well... We are all looking forward to our family time on the beach. Tonight we start packing and getting ready...
pray for all those traveling (even if its just a mile trip to the store), your neighbors, our soldiers(wherever they may be), all those families in hospitals, always pray.. hug your family and also be grateful.. with love and respect Amanda Jo
I have not met this wonderful family but, have kept up with thier precious little girl Navada for a while now. They have signed Kylies guest book on many ocasions. much to my suprise, today, when I went to check in on them, I found that Navada had passed away on Easter Sunday. my heart goes out to them.. PLEASE pray for this family.. Thankyou
Thursday, April 13, 2006 11:58 PM
Kylie completed day one of 15 radiation treatments. it went ok... our plan is today, tommrow, saturday and monday and tuesday then break because We have decided to throw caution to the wind and go on vacation as a family....
we are going to..... Mrytle beach.. we have just confirmed our reservations for an oceanfront suite! Kylie is very excited about seeing the ocean (and actually crossing a state or two off her list) we are driving and looking forward to the get away. Our hospice team here is contacting a hospice down there for just in case reasons. All her meds and the pump for fluids is portable, she has a wheel chair and jackie has her umbrella stroller, so the girls will have it made. our hotel has a gaming area, 3 pools(plus the beach right there), a lazy river, 3 spas and an 8 lane bowling alley we really wont have to leave the hotel. Hopefully the five treatments will help ease some of kylies symptoms. She is tired but excited! God has truly blessed us with this trip and being together. I will have so many pictures to share when we get home. Im already themeing (in my head) the scrapbook pages.... we will be leaving on wednesday and returning on monday...
After we return we will start up the last 10 radiation treatments and she will also be recieving her 3rd round of Zometa(bone pain med).... We are also cosidering starting up a diffrent at home comfort chemo. The VP-16 just wasnt holding back the pain as we had hoped(her eye tumor grew right through that chemo). We arent looking for a cure chemo(there really isnt one at this point) we are however looking for something to back off the pain. One blessed day at a time.
pray for all (including us)that are or will be traveling, pray for your neighbors ,our soldiers and all families stuck in hospitals. Pray for the lost.....with love and respect, Amanda Jo
Tuesday, April 11, 2006 12:36 PM
We ARE going to do radiation to the tumor behind her eye. I am happy that we can do something to help with pain. I dont believe radiation will really make a big diffrence, BUT, I do believe it will ease some pain, blurry vision, lighy sensitivity and headache issues, that she has been having recently. We are also going to start her on anti seizure medicines,(just in case). No worries, just a precaution when dealing with the possiblity of brain irritation.
It saddens me to think that there just isnt anything left but comfort care. YET, At the same time I am actually ok with comfort care, because, I know deep in my heart that comfort care does NOT mean she wont be cured, it means she will be comfortable when she IS cured. Thats a true blessing!
Tonight I am completely feeling comfortable myself. Over the last few days my emtions have really went topsy turvy, from anger,nervousness,helplessness,crazieness, begging God to take me instead, through denial to acceptance. What am I accepting?? I am accepting the last 3 and half years of our lives. I am accepting the fact the I have a child with.... (this is the word I have such a hard time with) TERMINAL cancer.
Tonight I got to spend a moment just being with Kylie(I get many of these moments) but tonights moment was with Kylie sitting in a hot tub at castaway bay, just relaxing when out of the blue, Kylie turns to me and says "your a great mom"..... It was that moment that I realized this was Truly a gift from God.. I needed to hear,to know ,that I have done things right for Kylie. Now I know that I have, I will have no regrets, or what ifs, to bother me later in llfe.
I was introduced to a song a couple weeks ago and that song is my song of choice to play over and over. (Thankyou so much WRPWs)Well anyway, a verse in the song goes "I can barely hear you whisper through the rain, I'M WITH YOU"..... Kylie speaking to me, was (in my mind connected to God reasurring me that hes always been with us).... Its a beautiful song and if I ever figure out how to put music on this site I would like to play it... If anyone knows how to do that please email me on how... thanks!
I dont get a chance to really properly thank people for things, so until I can properly get thankyou notes and such out, please accept this thankyou from the bottom of our hearts ,to all those that have helped us, prayed for us and have just been there for us.. Thankyou for all the loving support and once again, all the prayers.. thankyou for making our days brighter.... I will never be able to properly put into words what I want to say, just know that we are so very grateful and we cant wait till days come, when we "can pay it forward"
ALWAYS pray, and ALWAYS give thanks... with love and respect Amanda Jo
Monday, April 10, 2006 11:28 PM
Blunt and to the point this entry needs to be...
first off Kylie is neutrapenic(her counts are very low)
Kylie had her MRI of her head and the news was not good. We fully expected a tumor behind her eye, what we did not expect was a second tumor on the side of her head growing IN not out! what does that mean?? It means my heart has been ,not just broken, but shattered and it means our lives will be forever changed AGAIN! the bad news just gets a little more worse.... They will not be able to radiate her eye again because its been done once and the fear is the tumor wont respond a second time. Its worth a shot right? well, because its been radiated once with a higher dose of radiation they can only go with lower dose. That means it probaly wont respond! After my tears, my anger,and my denial. We made the hardest choice ever. We decided that we really need to think of what we can do FOR kylie, not TO kylie and the solution was to come home and live life. Kylie will be recieving "comfort" chemo and loving care from us, her family! She will be surrounded by the best of friends and lots of love(so really nothing new there). She will also recieve the best at home nursing care and the best pain meds availble, when needed....our at home kit will be delivered tommorow and Kylie will recieve fluids.. she will also possibly start here soon some anti- seizure meds, just in case.....
Its very hard for me to really express myself at this point, because I have done everything humanly possible to do right by kylie and all the same I feel so lost that I cant do more. On a medical stand point We have seen to it that she has been treated at the best hospitals by the best doctors and recieved the best available options we could find, at the time. Now it is time to realize that those options are gone and those traveling days are gone and its best for us all to just stay home and continue on loving this child the way we always have. its has become for us about quality Not quanity. Thats the hardest thing to think but its also the truest. Time is just not on our side(I wonder if it ever was).....
We are not giving up hope,we are still praying, and rooting for kylie to beat this. We also have to be grounded to the reality of it all.. As Kylies parents, we decided that she needs to know what is exactly going on( we have always been as forthcoming as possible with her about this sort of thing) so we had a meeting with holly,dr burke, linda and us, and we told her where we were at, treatment wise and where we were all around....... We believe, she knew this way before we did. Her spirit is unchanged. Thankyou GOD for making her a relativly happy child, thankyou for all of wonderful blessings from the home you gave us to the food we eat,for putting us together......Thankyou
please continue to pray for us, your neighbors ,our soldiers and those stuck in hospitals, with love and respect,Amanda jo
Sunday, April 9, 2006 2:35 PM
The weekend has been a nice one.. Kylie has been eating better and wanted steak(smile), so grandma and grandpa Russell took us all out to eat. We then went out and about and picked up some things for the fish tank that we are about to get up and running. Kylie picked out and paid for the gravel, and assorted "fish props". hopefully by next weekend our fish tank will be up for all of us to enjoy.
Jackie is now pulling herself up and walking around furniture. Its neat how fast they grow.... Kylie thinks shes funny and loves to make her laugh and watch her do the weird little baby things, that babies tend to do. What a blessing....
As for myself I'm feeling better, I'm pretty anxious about tommorows MRI and dr visit but,who wouldnt be. Kylie has just now started complaining that she has a dull achey pain when she blinks.. That cant be good! So far it has not bothered her to need any medications(pain wise).
Tuesday Kylie is planning a big day, she says even if she doesnt feel well, shes gonna make herself feel ok, because she wants to go to school(picture day)to see her friends. Then after school shes hoping to be able to attend AWANA, they are having a special gathering and to be honest, Kylie ( and we all are) is sick and tired of being sick and tired.... So who am I to discourage (not that I ever would, GO Kylie Go!!) that kind of attitude!
pray for your neighbors, our soldiers and each other. please pray for all those families stuck in hospitals, and please pray for those families that have lost somene dear to them recently....with love and respect Amanda Jo
Friday, April 7, 2006 4:24 PM
Today we went to the clinic and received some fluids. her counts are OK,not good or great, just OK. She did just end her chemo ,so this was not unexpected.
We will be having MRI done of her head on Monday. We will be hopefully finding out whats going on with the "eye thingy". Which is more noticable and starting to bother Kylie some. So hopefully we can get some radiation started or at least know.
The thing that drives me crazy is her limp is gone and now we have to deal with an eye thing, and the worst part and fear on my behalf is we CAN temporarily fix the eye thing only to have the limp and pain return! Cancer is vicious and I'm sick! I hurt so deep inside that nothing can make my own personal pain go away. I am so angry and tired of the whole thing. I cant fix Kylie and now I cant even fix myself and I am so blasted mad!!!!I wanna throw things! I wanna run around like they do in movies clearing off desks and tables and breaking things... back to reality, thats just not who I am........
since this website is not about me, let me say kylie is doing alot better. her bathroom issues are easing up and her pain is pretty much almost non existent. James did her port again today and that went well. James does so well with her on the medical front,( well ALL fronts really!!) we are all so proud of him. I'll be honest, the port inside her chest bothers me(because I cant see it and it involves a needle in order to get to it, I'm a bit squeamish about that sorta of thing...) I'm sure it bothers James too but, hes alot, NOT squeamish when it comes down to it.. Knowing my issues, Kylie is way more comfortable with James doing it than me anyway.(cant say I blame her.)
please pray for all families dealing with anything, not just sickness, just anything. Just pray, everyone can use a prayer.... with love and respect, amanda jo
Wednesday, April 5, 2006 11:08 PM
All is well in the Houtchings Household. Kylies has Not needed a pain pill for 2 weeks now. She is still vomiting(at least once a day) and having bathroom issues several times a day BUT, it seems to be slowing down and she is trying to eat more. She received fluids on Monday and ,she is drinking very well at home...
James did a great job accessing her port Monday. He did what they told him, and got it straight in the first try and received great blood flow return. He wants to do it again Friday to make sure he can do it alone at home. We have great confindence that he'll be just fine. Hopefully we wont ever get to the point where we would need to do it here at home, but its good for him to know.
Our next appointment is Friday and we may or may not receive blood. I'm hoping for the may not but if we do than, we do, no big deal. Tommorow the music therapist will be coming over so that should be fun for Kylie.
Kylie hasnt attended school the past couple of days because she has been a bit tired. Today ,is her last chemo and then we are off for a week, so maybe her energy will return some. I am happy to annouce her limp is pretty much gone! BUT, unfortuanatly the tumor behind her eye has started to show itself slightly. Not alot just slightly and unless your looking for it you cant really tell. We are talking a head CT sometime in the near future, so we'll just wait and see.....
pray always for those around you, A couple of families that I keep up with here on caringbridge have recently lost their children to this disease and although I dont know them personaly, I have been following them for some time now, and have felt their greats and thier sadnesses as if I was right there, they need the prayers. 2 have passed away and one is soon to follow and it breaks my heart, please lift these and all families up in prayers..... with love and respect.. Amanda Jo
Sunday, April 2, 2006 7:45 PM
we had,for the most part, a good weekend. Kylie ended up not attending school on Friday due to a belly ache. She hasnt been feeling the greatest,the past couple of days. She did throw up a couple of times and has some bathroom issues as well. It dawned on us that she hasnt been drinking alot and after just receiving that drug zometa, she could very well be dehydrating. We have a moved her appointment up to tommorow instead of Tuesday.. hopefully we can get her fixed up.
A big highlight of the weekend was Jackie has started crawling. She sorta crawled before, (just a bunch of scooting and army crawling)but on Friday she actually got the hands and knees going. So far her favorite place to crawl is.... Yep! you guessed it ,Kylies room...smile! we are in so much trouble now...SMILE (its all so precious, what a blessing, to be able to witness your children growing up right before your eyes)........
Tommorow, we have made plans for her daddy to learn how to access her port. The plan is for him to learn to access her port, so IF we ever need to recieve something like fluids here at home, he can access it and have her all ready when the nurse shows up with the fluids. This will be so helpful to us in the future!.....
We also went for a short walk today and enjoyed some fresh air... Kylie will be off the chemo(in a few days) for a week, and then back on for another 3 weeks.....other than that, not to much to report.
please continue to pray for our soldiers(wherever they are,those families stuck in hospitals,and your neighbors. always give thanks for the little things..with love and respect Amanda jo
Thursday, March 30, 2006 4:08 PM
What a glorius day! Kylie stayed home from school to rest some and all is well.
first after I took care of some appointments in town. I came home, where, we got out and enjoyed the fresh air and sunshine. Kylie, Jackie and I wheeled,strolled and walked down to the mailbox. We came back and picked up some pine cones and came in the house for project bird feeders. We first tied string around the pine cones , spread peanut butter on them , covered them in birdseed and then we went back out side and hung them from a tree.. so birds welcome!
Later on tonight my good friend Christine will be stopping by for a fun night of scrapbooking and chatter(smile) which brings me to a favor I would like to ask... Anyone that attended Kylies party, that may have taken pictures, would you please email me some or have doubles made and send some home with Kylie from school. My next scrapbook adventure is a 10th birthday party book.. Thankyou I would really appreciate it.
All is well in the Houtchings Household. Tommorow Kylie will be attending school and our next appointment is on Tuesday. Yesterday our home health nurse visited and all is ok on that front also.... Kylie has not taken any pain meds since Sunday night(praise the Lord). She is more tired as of late but other than that all is good.
pray for your neighbors, our soldiers, eacher other, all the families stuck in hospitals or places away from home, and add alot of thanks in there too... with love and respect Amanda Jo P.S I will be updating pictures soon.Big Smile!
Tuesday, March 28, 2006 4:09 PM
Long day in Cleveland. All is well . Kylies counts are pretty good. Platelets are a bit low but, not to low and it was expected....
Today we came in for Zometa, its a bisphosphanate(I just like the fact that I know this word..smile) Anyway, zometa is a pain killer of sorts, its supposed to be long acting. It goes in and sorta smooths out any rough edges from bony lesions(kylies has mostly bony lesions), it somewhat helps repair some damage that may have been caused by some of these bony legions. We will be recieving it every 4 weeks. We have to watch her calcium levels, we have seen after our first use, that it drops her calcium and gives her minor tremor issues. Nothing to worry about, we have it all in check!
Anyhow, all is good, Kylies limp does seem to be dissapating and we praise God on that one! Her pain has become less and less, Another praise for sure! I hate seeing her in pain, but alas I must be realistic. I am hopeful that her pain levels keep decreasing BUT, I must keep in my mind that her pain may return and I need to remember that we are dealing with a very tricky,decietful and manipulative cancer, not to mention the roller coaster of emotions this cancer likes to take us on.. The best way to describe this cancer is like that greek mytholgy creature where just when you kill it by chopping its head off,(it looks dead,its acts dead)BAM 2 new STRONGER, more resiliant, smarter heads show up. You get a bigger weapon and chop off those heads and this time its dead longer and your sure you got it but, then WHAMO again! this time 4 angrier heads and and you definatly need something stronger, sharper and so on... knowing that each time you get it down ,its gonna come back harder ,faster and way more scarier than the last time! Its great, that we have ways of cutting the heads off, but how do we keep those heads from coming back and multiplying??
All I can do is Pray that something very promising comes along sooner , rather than later.....
fighting off this scary zillion headed creature is hard and very draining.Yet, I have noticed that it may have weakened Kylies body some, but it has not weakened her spirit, determination or faith, and that for sure is something to praise God on!!!!
pray for your neighbors, our soldiers(wherever they may be), each other and never cease to pray, always remember to give thanks, and hug your children... with love and respect, Amanda Jo
Sunday, March 26, 2006 5:15 PM
What a wonderful weekend it has been... God has blessed us again! this weekend James and I had a retreat just the 2 of us and it was wonderful! a beautiful log cabin on a hill with a heart shaped jacuzzi and a fireplace no children, just us!... we talked, laughed, and relaxed. we enjoyed some shopping in amish country and had an all and all good time....
On the home front Kylie was well taken care of. she is well! her pain was minimal over the weekend(praise God thats a good thing). I hope this means the chemo we fought so hard to obtain is doing something! we have an appointment on tuesday. our wonderful nurse just got back from a convention for the childrens oncology group so I'm hoping there is something out there worth trying for us....We'll soon find out!
please continue to pray for your neighbors ,our soldiers(where ever they are) and all around you and always give thanks for his works...with love and respect, Amanda Jo
Thursday, March 23, 2006 10:38 AM
Today is the big day!!!!! Today my baby girl has now become......... My big 10 year old baby girl!! (SMILE)
Its so amazing how life unfolds in front of our eyes. 10 years ago I was in the hospital having this child and now 10 years later.... Im sitting at home typing an online journal about this same child, fighting cancer for the last 3 years... It seems like such a long ,long time has passed between then and now, but really its only been 10 years and in the scheme of things 10 years isnt that long.(of course I dont remember myself at 10 but its been alot longer of a stretch...smile...)
Any way.... This is a gloriuos day! Kylie has entered the double digit world. Now soon she can get a job and start paying rent! (just kidding!!!!) 10, she 10! I cant believe how fast 10 years has come . I swear she just said her first word ,YESTERDAY! , I have pictures of this little baby and she was just so tiny and now shes almost as tall as me(thats not really saying much,hopefully she'll be taller than me).I have video of her singing the alphabet song for the first time in this little, itty ,bitty, rinky dink voice and now she sings Hillary Duff(a little off key ,but more grown up than the alphabet song).... I used to do goofy things to make her laugh, now I suppose I just embarras her..smile.. so, now I get to repeat this whole cycle with Miss Jackie who will also be 10 before we know it...What a great blessing it is, to be a mom!
life is such a blessing and it just goes on so fast.. Im very happy that she is 10 and I'll be very happy when shes 11,12, 13 and so on..... Oh 13 might be an iffy age(the whole teenager thing) but hey could prove interesting..smile!
please pray for all, around you, and give thanks daily.. with love and respect Amanda Jo
To darin dupont and family, SHAME on you!!! if youve been following this site and havent acknowledged Kylie until now because its her birthday!!
Saturday, March 18, 2006 10:20 PM
GOD is great! Tonight we celebrated a bit early by having a BIG party at Kylies school cmplete with a dj (thank you all around sound, they are highly reccomended) and a limo ride to her party.....
The night went off without a hitch! THANKYOU SOOOOOO MUCH WESTERN RESERVE TECHERS, FRIENDS AND FAMILY FOR HELPING MAKE SUCH A SPECIAL DAY FOR KYLIE!!!!! GOD BLESS YOU ALL!!!!
THE NIGHT WAS WONDERFUL! It started with kylie and her good friends Ashley, Mary ,Emily, Emily(her cousin) and Kristen in a white stretch limo to the school.Everyone was waiting whith cameras and video. then in to the party. Good food , and good music, with plenty of friends.... The dj had Kylie lead a locomotion line, we did the hokey pokey, cha-cha slide,and the infamous chicken dance.. Our precious cleveland clinic family came out, kylies dr and nurses were there (what a wonderful blessing to have such a fantastic medical team) .... My uncle kept saying how amazing it was for our own dr to show up and i just beamed, yep thats our doc,God has great things in store for him!
tonight was a precious most wonderful night, that will always be in our hearts.. thankyou again to our wonderful friends and family for helping make a memorable night
the party had a time limit due to kylie getting tired and all but she made it most of the night with very minimal pain. We had to bring all her gifts home to be opened here and there.. so far she has gotten some really cool,beautiful and all thoughtful things.... i am keeping record and proper thankyou notes will be handed out as soon as possible. i made it most of night without crying until i saw what the teacers got her, a beautiful charm braclet with a cross of her birthstone, praying hands to represent the prayer warriors and a pizza charm to represent chucky cheese(smile).... my dad got her a beautiful very special heart neckalace....
And the best dance of all was kylie and her daddy... "as long as one and one is two, there will never be a father loves his daughter more than I love you " it was a priceless moment of pure love..(ok i teared up for that too)
We should always pray for each other, we should also praise the lord for all the wonderful things he gives on a daily basis.... with love and respect amanda
Tuesday, March 14, 2006 10:29 PM
Hold onto your seat, I'm mad!!!
Ok I'm just a little miffed.... Insurance! ugh!!!
heres the the insane thing.. Kylie was supposed to start an oral chemo at home on Friday. Well , as it turns out the insurance said, "oh sorry but we wont pay for a generic form of this chemo, she has to have the brand name or nothing at all"(HUH??) In order for us to pay for this particular generic, she has to have tried and failed on the brand name..... My thought process is : 1)if she failed the brand name ,why would we bother getting the generic???? and 2)isnt it cheaper for the generic than the brand name???? No wonder health care is a mess! so whats a mom to do for her child, who desperatly needs something,(even if its not a cure, its a comfort and pain free issue, Quality of life IS important here!)??? Solution: Lets bend when the winds blows and get the brand name! PROBLEM! the clinic ONLY carries generic, the brand name has to be ordered and dropped shipped. So lets just sit and chill and let cancer grow and dope her up on pain meds until it arrives, by snail mail(thats not the case here, but it could be)!!!
We get to the clinic and guess what? Suprise! your chemo is still not here and wont be till Wednesday or Thursday..ok, so we have no more appointments this week. I love driving an hour for a five minute pick up! Actually thats why we have been so blessed with our new team members from home health. Our nurse can probaly pick it up for us and bring it to us on her next visit. But for now Heres what the Houtchings did: We paid out of pocket for 3 generic pills to tide us over until the "brand name" arrives... heres darn near 200 dollars(for 3 pills) have a nice day!!!! Price is of no concern(although we dont want to pay for 3 weeks worth of the brand name) its the whole idea of just how backwards thing seem to be.... As I type though I am starting to feel gulity because there are people who dont have insurance at all, and have to practilly sell thier limbs and loved ones for medications And its adds up to alot more than we've ever had to pay........ I hope I havent offended anyone with my rant!
So heres the plan: LOOK OUT future politicians Little Jackie JoAnn is going to change this world. Shes gonna change it all for the good, and since shes a girl she can multi-task.... So, after she gets back from space, creating world peace, feeding the hungry and spreading the glorious word of GOD around, Shes gonna put a big bandaid on health care!!!! Dont worry Kylie will be off creating missions, planting churches, housing the homeless, of course doing vetrinarian work, accepting humanitarian awards, winning nobel peace awards and proudly cheering on her little sis... What a team! the Houtchings girls are gonna make it all better! I know I left out finding a cure for cancer but, I'm gonna leave that one up to our dr(hes just that great of a dr.).... A mom can dream...
Anywho, all is actually going well, Kylies counts are good. Her spirits are good, Jackie is good(about to crawl and then stand right up, we are in soooo much trouble!SMILE),James is good and I'm actually good too.Smile.
please pray for insurance companies, those that dont have insurance(I guess the pill problem is pretty minor in the scheme of things), your neighbors, Our dr, who will be moving soon, our soldiers and all those families in the hospitals... with love and respect.... Amanda
Saturday, March 11, 2006 9:13 PM
Not alot to report, just a normal weekend ,just chillin' at home.. We are eating the BEST watermelon ever! Thankyou Mrs Kovach!
Today we just went out and about and walked around the mall (Kylie wheeled,she sure gets around good in her new set of wheels).... We also took my dad out to eat.
Our wonderful home nurse came out on Friday and all is well with that.... We have decided to do a chemo called VP-16. its a pill that we can do at home. Kylie has had this chemo in the past, but its been a long time, so maybe we can see some results. If nothing else it could help aid in pain managment. Always a blessing to be noted!
continue to pray for your neighbors, our soldiers(where ever they may be), and all children.....with love and respect. Amanda jo
Wednesday, March 8, 2006 5:52 PM
New pictures!!
Well Kylies scans did not come back as we had hoped. there are some new spots. we are looking into further treatment options. One day at a time!
Kylie will be attending school tommrow. Praise God! She is feeling well and her counts are normal(for her anyway)... She is still limping but pain is not a big issue right now for her.(cant beat that)
please continue to pray for Kylie and all the families in the hospital(and out of the hopsital), your neighbors, our soldiers(wherever they may be) and always pray for each other. with love and respect Amanda Jo
Monday, March 6, 2006 11:46 AM
Just a quick short note today...
Kylie is in school today!! Just in time for profiency testing..Smile
All is going well, Kylie is STILL limping, but she seems to do ok. She rarely takes anything real heavy for pain. She is so brave and so strong! She truly is my hero!
Tommrow we go back to the clinic for counts and an MIBG injection and then Wednesday is the BIG scan.. Hopefully this scan will show us the way, as in continuing on the same path or finding a diffrent path.. Its Gods plan, Gods path, of course!
Our weekend was wonderful! We have been richly blessed with such a wonderful, caring family. My sister-in-laws helped clean our house and watched the kids, so James and I could have a nice dinner out. Thankyou ever so much!
please pray for good news on the scan, your neighbors, our soldiers and all the families in the hospital(young and old).....with love and respect.. Amanda jo
Thursday, March 2, 2006 3:46 PM
All is so far so good.. Went to clinic today and all her counts came back good. she is limping somewhat still, but the pain is definetly more managable, than it was a week ago.
Her wheel chair arrived yesterday and we used it today. She walked as much as she could before using it. (way to keep those legs strong). I must say Kylie is just so brave!
Scans next week!!!! Cant say much about that , I just have a hope that the drugs really are working and that the pain was a result of cancer cells dying off and not growing.....
I want to write a bit about my husband James. Last week while we were in the hospital James single handedly managed to work third shift 8 to 10 hours, find sitters for jackie,visit us, entertain company and still manage to sleep. I have to say he did an EXCELLENT job! we are very proud of him. Sometimes when I write these journals I feel like I may leave out the biggest support that kylie and this family has. there have been many a times James has let me sleep, while he stayed up with kylie and/or the baby, even though he had to work.thats just one of the many cool things hes done.. So what, if he leaves a sink full of hair after shaving..(smile) I just love,love,love my husband.
please pray for people traveling,your neighbors, our soldiers(wherever they are). always pray....with love and respect Amanda Jo
Tuesday, February 28, 2006 6:47 PM
Home Sweet Home!
Yeppers, we are home! just got in this afternoon and after 9 days in the hospital home feels pretty good. well sorta.... Home is great indeed but, I'm a bit nervous trying to settle back in with kylie (who is not quite 100% YET) and my little one ,is a bit overwhelming. Kylie has a few extra needs now.well, since Im not the first to have to do this sorta thing, im just gonna suck it up and get on with it. Once Kylie gets around to being her more active self, things will once again fall in to place. we are very grateful and blessed to have a wonderful support system in place. I will write more about our hospice program once its more in place.(its not a scary thing anymore)
Today, Kylies new toy arrived, Its a brand new shiny wheelchair for our distance walking and so on.. She did walk some today, not much, but more than she did 9 days ago!
we go back to the clinic thursday for our reg. checkup and our scans are set up for the 8th... hopefully the avastin/irino combo is still working some and the radiation is also kicking in some. If not I'm back on the research wagon(not that I ever jumped off)....
I have the sweetest pictures to put on here. I'll be posting those soon. By the way as soon as I got home and actually got a minute I checked on our little friends and I am very happy to report all are doing well, but dont stop praying for those kids and all kids....
Pray for your neighbors, each other and our soldiers wherever they may be.. pray that all the kids still in the hospital can go home soon. with love and respect Amanda jo
Monday, February 27, 2006 10:07 AM
AHH! the roller coaster of cancer.
Yesterday went very well. kylie had quite a few visitors and she seemed to be perking up, she ate about a third of an apple(there seems to be a debate about wether it was a granny smith or golden deliscious..smile!) she talked and played slapjack. She watched Bambi part 2(what ever happened to happy ever after, today it seems there has to be a sequil,prequil, highway and biway to every movie,book and slideshow. Sorry! off the high horse now)Anyway, after everyone left all was going fine then.... BAM! it all went down hill ..
At about 2 am her port wouldnt flush so they had to remove it and put another one in. Then she couldnt get comfortable and pain set in a bit and at about 4 am she asked for meds. she finally slept.... Until 7:30 when she was awoke again for a cat scan of her head. all you heard was her yelling "for crying out loud must you open this place soooo early" quite funny if i do say so myself..
So, we go down for her CT and she is hit with a severe nose bleed... dr comes in and decided she needed blood and platelets Her blood was at 8.9(they normally transfuse at 8) her platelets were 71, which isnt really horrible we've for sure have seen them lower. Better safe than sorry. She was whiny and really wanted to go to sleep.....
Now(after the nose bleed keeping her awake)she IS awake! Our coaster has hit a smoother straighter path(just for a minute though.smile) she is now eating a bowl of sugarflakes. Praise the Lord!!!!!!! after everything she hasnt really ate anything for about Oh, 6 days.....
Its official been here to long! went down to starbucks and usually they write the drink on the side of the cup. Today tiffany(and yes I know them all by name..SMILE) anyway, tiffany said hi and just got a cup wrote Amanda on the side of it and it was made for me..... Oh My!!!!
up, down, better, worse,bad then good... welcome to the world of cancer The WORST amusement park on earth!
please pray for all the families stuck here. we now have a roomate.. pray for your neighbors and our soldiers.. also pray for those driving in this weather(snowing here). Always count your many blessings. with love and respect Amanda Jo
Saturday, February 25, 2006 8:04 PM
QUICK UPDATE KYLIE HAS BEEN MOVED TO RM M-30 RM 16..no real reason just needed a change of scenery...smile
I added 1 very new sweet picture, so check it out ..
Things are improving a bit. Kylie has finally went(you know what) after 8 days of NOT (you know whatting!) so its a step in the right direction..
Pain has been slowly decreasing and becoming a bit easier for her now. She sleeps alot and is still pretty tired and drained but some improvement is better than no improvement.
She is on alot of diffrents meds for this and that and she is still spiking fevers of about 102. Not sure how much longer we will be in patient. We meet monday after her last radiation treatment, with hospice to discuss at home pain management and care. Then after that we'll be meeting up with the drs to decide what we can do FOR Kylie not TO Kylie for treatment options and plans.
Thankyou ever so much for all the support, care, words of encouragement,flowers, goodies and most importantly prayers. God bless you all!
we are so blessed to be surrounded with such an awesome family and great friends... Good news afew (not all, as I had hoped) but a few of the kids made it out for the weekend and it was great to see them go! SMILE we'll be next!!
Please continue to pray for all the families at the hospital,your neighbors, our soldies and each other. never cease to pray.. love Amanda
Thursday, February 23, 2006 9:08 PM
yep we are still in the hospital....
Things are going ok, NOT worse and not really better. She is moving a bit more without crying to bad. She is still in pain but, its NOT worse....
our drs are working hard for Kylie and finding her things to help with pain and comfort. We are sooo blessed to be here at the Cleveland clinic. Our dr Rawwas is just amazing and we do just adore him. All I have to say is Minnesota better treat him good! All the drs and nurses are very caring and attentive. Kylie has been passing out her braclets and they all wear them.. Pretty cool!
Back to Kylie, she is not quite herself but shes holding steady and keeping prettty good spirits. she is doin those suduko puzzles like mad and shes pretty good at them. Keeping her mind sharp is a good thing thing. Havent had any fevers, so another good thing.... She hasnt went (you know what) yet, but she did drink a "special cocktail" and held it down soooo hopefully tommrow. Enough about that, the last thing kylie wants to tell people is about are her potty habits...
As for me, yeah, Im scared and feeling very helpless but I will remain strong for kylie. My faith remains strong. I also know that no matter what happens, Kylie WILL be healed!
well the floor is full now, we have a roomate now. so please pray for this whole floor and all the families stuck here like us. wouldnt it be great if every last one of us could be discharged for the weekend?! Thankyou all for your prayers and visits and calls.
Dont forget to pray for your neighbors and our soldiers wherever they are.
I thank God for my husband James for working hard and managing Jackie on very little sleep and still managing to make it up here to help and support kylie. I also thank God for my wonderful supportive family and some really awesome friends......with love and respect amanda jo
Wednesday, February 22, 2006 4:37 PM
Well we are still in the hospital and the truth is things are scary.
kylie can not walk and standing just for a moment to go on the bedside commode puts her in tears. We are now on a round the clock morphine schedule. she doesnt eat well and shes not going to the bathroom,bowel movement wise. The other morning she spiked a fever of 104, and shes been spiking low grade temps off and on since.(blood culture shows nothing, so thats a good thing). She has been throwing up from the morphine and lack of BM.
We got the x-ray of her ankle back and there is a mass on top of her foot, causing pain of course. that says to us progression is definate. what are options? I dont know!! For now, we are finishing chemo and the radiation and working on pain issues. Yesterday she complained of her knee now starting to hurt and then today her back is starting to bother her.. DAMN! is all I have to say!
They are hoping that if they give her a colace to get things moving that the eating will come back and things hopefully will fall in to place from there.
Will we be going home soon? YES! probaly(hopefully as long as things go smoothly,no pun intended) by the weekend. once we get home hospice will be in place to help us with pain management(if needed.Hopefully radiation will kick in and things will be better.)
My thoughts and emotions are in complete overdrive right now! I would truly give anything right now to trade places with her. It was then that he carried me!
I havent been able to check in on our little friends so please put an extra prayer for Lana,christi,little kylie,tyler,jay,brianna,hanna,emily,neal,savannah,penelope,madelyn and all the other kids that I dont know about.I hope they are all doing well... with love and respect amanda
Tuesday, February 21, 2006 11:29 PM
We did get an x ray done of her ankle.. no word yet. poor baby,that was a traumatic experience for both of us..
Kylie is having pain issues with her hip and ankle and currently walking is not something she can do... we are doing radiation twice a day to both areas and are on some pretty good painkillers,plus we are still getting the irino chemo, so hopefully by the end of the week,she'll be feeling alot better....
I spoke to soon and the childrens ward is starting to get busy, please pray that these kids(kylie included) can go home soon and not be stuck in the hospital. pray for your neighbors, and our soldiers where ever they may be... with love and respect amanda jo
Tuesday, February 21, 2006 2:26 PM
Well here we are at the hospital and things are a bit hectic.. I am for a minute gonna assume we are gonna be here for a small stay.
Kylie has recieved her chemo and radiation to the left hip. we are also having her right ankle radiated. Her right ankle is causing quite the bit of pain on her and is now swollen some since yesterday.
The pain thing right now worries me, its intense for her and I wish it was me. our dr came in this morning and was talking about side effects from the avastin and maybe ordering an MRI of the ankle... havent heard back on that yet.
Despite it all, we are hanging in and we are doing ok.thats really it for now.
I am actually glad to see the childrens hospital is pretty empty thus far, pray it remains that way. amanda jo
Tuesday, February 21, 2006 1:13 AM
Well judging from the time as you can see our days and nights have just become longer. We are in the hospital...
Today Kylie came in for her avastin/irino chemo combo and it was decided that we are going to do radiation on her leg... As you may have read in previous journal entries, Kylie has started limping again. Well it has gotten progressively worse in the last few days. Today she could not walk for the pain was that intense. Make a long story short, she spiked a small fever and we came in for the fever and better pain meds. Tommorow we start radiation and start our second day of chemo. The plan is to finish this round chemo/radiation, get some better pain meds for home and scan in a week or so. Hopefully the external radiation will help alleviate some of the pain.
To avoid future runs to Cleveland for the "good stuff", we are looking into home health for pain management if needed. That way the "Good stuff" can be delivered to us ,if needed, and I wont have to get my good friend Christine out of bed to watch our very awake 6 month old..Thankyou ever so much Christine!
Despite it all, everything is under control and Kylie is doing well.
we should always pray, for our neighbors, for each other and ourselves.........Amanda jo
Monday, February 20, 2006 8:22 AM
Today we start our week long chemo adventure again.
Annie was wonderful and we really enjoyed ourselves. I am very glad we got to go( a big thanks to the Littlest Heroes and the Cleveland Clinic)
Kylie enjoyed going to school this past week. It did tire her a bit more by the end of the day. Over this past weekend, Kylie began to limp again and as the weekend wore on, the limp has gotten worse. she has also experienced some pain. There are a few more symptoms/issues going on but nothing to rattle on about. Now my husband and I wonder if this could be a late onset of symptoms from the chemo, We wonder that because, She had these same issues before and just when we thought her scan was going to be horrible. It turned out to be a better than we truly expected. So with that thought in mind, I guess I'm just not gonna panic. I'll talk to the dr and see what is recomended....
one day at a time!
our nephew in Indian was in a auto accident this past weekend and everyone is banged up but ok(praise God)(get well soon Buff), please pray for Them, your neighbors, our soldiers and each other. Never cease...... Amanda Jo
Tuesday, February 14, 2006 8:43 AM
HAPPY VALENTINES DAY to my sweet family and friends..
I just sent miss Kylie off to school, which she will be hopefully attending for the rest of the week except Friday.
Yesterday, Kylie had a clinic appointment and it went suprisingly quick. her counts were great! In fact, the best they have ever been in a real long time. Her platelets are at 133(the norm 150-400),almost normal.
Normal, what a diffrent meaning that word has for everyone. We were told a while back that because of all the treatments that Kylies counts would "probaly" never hit the normal ranges again. Once again Kylies body(and our father in heaven) have other plans and everything is slowly creeping back up. We thank the dear Lord for this! We are truly, truly blessed.All her other counts are equally as good, I wont bore you with actual numbers...
I was saying that Kylie will be at school everyday except Friday, well, Miss Kylie does not have an appointment Friday. Instead, Thanks to a wonderful organization called The Littlest Heros, Kylie and I will (along with some other clinic friends) be attending the theater version of Annie in Cleveland in balcony type seats! Annie is one of our favorites. Kylie and I both know all the all the words and must have watched the original movie Starring Carol Burnett hundreds of times!! Now we get to see it live and ,believe me, we are both very excited! (hope we can contain ourselves and sing to ourselves..smile)
Kylie does seem to still have a slight limp but it doesnt seem to bother her real bad. We have decided to leave it alone and just manage pain if needed. . The plan is, Starting Monday, we will be once again going everyday up to the clinic for our Avastin/irion combo. Then we will be set to scan shortly after that(I'll worry about that later!) Thats pretty much why we have decided to let the limp go (unless it gets to bothersome for her then we will talk external radiation to the site)But, for now its seems to be under control and pain is very managble and minimal...
I am very happy for Kylie because this week she gets to be a normal(theres that word again) kid. Honestly, I'll be the first to admit I used to take watching Kylie get on the bus for granted and now I try so hard to not take anything(espesialy Life and the small things) for granted....
please lift up your neighbors, our soldiers and the whole world in prayer. with love and respect Amanda jo
Thursday, February 9, 2006 9:08 PM
Well not to much to update on, Kylie made it to school today. WE INTERUPT THIS CARINGBRIDGE JOURNAL ENTRY TO BRING LATEBREAKING NEWS JUST IN.....
IT SEEMS THAT KYLIE MADDISON HOUTCHINGS A 9 YEAR OLD THIRD GRADER FROM WESTERN RESERVE ELEMENTARY SCHOOL HAS JUST COMPLETED HER VITUAL TOUR OF THE UNITED STATES AND CANADA. WE NOW TAKE YOU TO AN EXCLUSIVE INTERVIEW RECORDED EARLIER TODAY BY MOMMY NEWSCASTER OF HOUTCHINGSCNN.....
WHEN I SAW MISS KYLIE, SHE HAD ALL HER SOUVENIERS SPREAD OUT ON THE TABLE AND INFORMED ME THAT, SHE WAS WEARING A HAT FROM IDAHO,SHIRT FROM SOUTH CAROLINA, LIGHT JACKET FROM CALIFORNIA, PANTS FROM FLORIDA, SOCKS FROM NEW YORK AND...UNDERWEAR FROM OHIO! (I GOT A BIG LAUGH OUT OF THAT ONE!
MOMMY NEWSCASTER: FIRST OFF WELCOME HOME MISS KYLIE AND CONGRATS ON COMPLETEING YOUR VIRTUAL TOUR.
KYLIE:"THANKS ITS BEEN A LONG TRIP"
MN:SO, TELL US ALL ABOUT IT?
K: "COLORADO WAS REAL PRETTY"
MN: YOU LIKED YOUR TOUR, I CAN TELL. I SEE YOU HAVE ALOT OF SOUVIENIERS, YOU WANNA SHARE WHERE ALL THESE CAME FROM?
K:"I GOT SOCKS FROM NEW YORK, PANTS FROM FLORIDA,SHIRTS FROM MAINE, NEVADA AND SOUTH CAROLINA, A JACKET FROM CALIFORNIA ALONG WITH BEADS FROM LOUISIANNA, AND MAPLE SYRUP FROM BOTH VERMONT AND RHODE ISLAND, I ALSO GOT AN AUTOGRAPH POSTER OF A PLANE THEY FLY IN WARS AUTOGRAPHED BY A REAL PILOT FROM MISSOURI, PICTURES STUFFED ANIMALS, TAFFY FROM NEW JERSY AND UMMMM MICKY AND MINNIE AND POCAHANTOS FROM DISNEYLAND IN CALIFORNIA HOLDING MY KYLIE BANDS, OH AND A COW FROM VERMONT..."
NM: HOLD UP, A COW? YOU GOT A COW FROM VERMONT??
K:(LAUGHS) A STUFFED ONE OF COURSE AND UMMM I FORGOT I GOT ALOT OF POSTCARDS AND PINS AND FLAGS AND LETTERS AND PUZZLES AND REALLY NEAT STUFF OH AND POSTCARDS"
K: UMMM MAINE WAS REALLY COOL, VERY PRETTY. I UH ALSO GOT A STARFISH FROM CALIFORNIA,OR UMM HAWAII,I CANT REMEMBER, I ALSO GOT A REAL PIECE OF ROCK FROM A KENTUCKY MINE OR MOUTAIN OR SOMETHING"
NM: THATS TRULY WONDERFUL. YOU MUST BE SO EXCITED! ARE YOU GLAD TO BE HOME?
K: "YA KNOW IN UM, KANSAS THEY SAY NO PLACE LIKE HOME, I ALSO GOT WIZARD OF OZ STUFF AND THE WRITER OF SNOOPY IS FROM MINNESOTA. I ALSO GOT SOME STATE QUARTERS, AND KEYCHAINS AND MAGNETS FROM DIFFRENT STATES, OH YEAH AND GLOVES FROM MICHIGAN AND A POSTCARD FROM CANADA"
K: "I AM GLAD TO BE HOME WITH MY FRIENDS AND FAMILY. AND BISON JERKY FROM ONE OF THE DAKOTAS. AND ONE MORE THING A REAL LIVE MESSAGE IN A BOTTLE FROM FLORIDA WITH A NOTE FROM A GIRL MY AGE ,IT HAS SAND AND SHARKS TEETH IN IT"
NM: WOW! THAT SURE IS NEAT! WHAT DID YOU LIKE THE MOST?
K: "ALL OF IT I REALLY LIKED THE PUZZLE FROM MAINE IT WAS 1000 PEICES AND I DID IT ALL AND IT WAS FUN ,WE THOUGHT WE LOST THE VERY LAST PEICE BUT MY MOM FOUND IT SHUWW I WAS GLAD."
NM: WHAT ARE YOU GONNA DO NOW?
K: "IM GONNA GO BACK OUT AND MEET ALL THE PEOPLE WHO SENT STUFF THEN I CAN TRAVEL ALL 50 STATES FOR REAL AND HAVE PLACES TO STAY" (KYLIE WAS GRINNING FROM EAR TO EAR AS SHE SAID THAT)
NM: WELL THANKS KYLIE FOR SHARING ALL THIS WONDERFUL STUFF WITH US.
K:"NO PROBLEM NOW I JUST GOTTA FIND ROOM FOR ALL THIS STUFF IN MY ROOM.." (SHE LAUGHS WITH A BIG SMILE)
NM: THERE YOU HAVE IT FOLKS KYLIE HAS COMPLETED HER TOUR OF ALL 50 STATES AND CANADA AND IS IN GREAT SPIRITS.. I WOULD LIKE TO SEND OUT A GREAT BIG THANKS TO WESTERN RESERVE ,FAMILY AND FRIENDS FOR HELPING THIS BRAVE LITTLE GIRL HAVE ALOT FUN IN LIFE AND FOR MAKING HER DREAMS COME TRUE..GOD BLESS YOU ALL!.. THIS IS NEWSCASTER MOMMY FROM HOUTCHINGSCNN SIGNING OFF
WE NOW RETURN YOU TO YOUR REGULAR JOURNAL STILL IN PROGRESS....
well thats about it, all is well in the Houtchings household, pray for your neighbors and each other always...with love and respect Amanda Jo
Wednesday, February 8, 2006 9:06 PM
Things are going well here. Went to Cleveland today fully expecting a transfusion of platelets, and her platelets were great! I was ,I'll be honest, a bit shocked. Miss Kylie has been bruising like crazy, so I figured,oh, low on platelets.. I just love being wrong(smile).
other than that, all is well in the Houtchings household. Kylie is eating well and feeling quite good. She made it to school on Monday. By the looks of things outside, she may or may not make it to school tommorow...
Little Jackie is as active as can be, cant believe in 10 days she will be 6 months old.. Dont worry folks, Unlike Britneys Spears baby, I wont let Jackie drive anytime soon!(Smile,sorry, just had to throw that out there) She rolls all over the place and was just cooing and gooing and screaming up a storm today.. She loves her walker we picked up for her and loves to just check it all out, while on the go! What a joy she is for this family and Kylie is the best big sister ever!! she just loves her and loves her. We all had a funny laugh tonight, Jackie rolled right over to out cat and tryed pet him (pet for a baby means grab on). Poor Little Bear he didnt know what to do but, he didnt bite or nothing he just layed there and tried to roll away while meowing real loud... Hes a good patient cat, I would of bit her...smile....(just kidding)
Our next appointment is next week on either monday or Tuesday.. then we will probaly start another round of the Avastin/irino, chemo combo and then scan sometime after that. I'll worry when we get there(scans always make me a nervous nellie)......
pray for your neighbors ,our soldiers(wherever they are), never cease to pray... with love and respect Amanda Jo
Friday, February 3, 2006 8:03 PM
Well we did it! Today was our last round of chemo... for now, for the week anyway..
I'll be very honest, I dont know where we go from here. I dont know what exactly our next step will be... I'm gonna assume for a minute that we are gonna scan again in a couple of weeks. or maybe, we will do another round then scan,I'm not real sure. We have another appointment come wednesday so I'm sure We'll find out then.. until then we are just gonna relax and not worry about tommorow until tommorow....
Sunday, is a big day for us! first, Kylie will be going to AWANA grand prix to race a car, her and daddy have been working on.. then Of course the superbowl game is on(GO STEELERS!), that should be pretty fun. We are having a couple of friends over and I'm making chilli.... This weekend is just gonna be a relax and relax weekend for us...
Kylie has almost completed her vitual tour of the states and canada.. We are all very excited and on pins and needles as we get closer to reaching her goal.... thankyou friends and family for helping kylie acheive a really cool (virtual)dream.....
Plenty of prayers are needed for a few families that we know that are going through some difficult times with their children. A couple of families have relapsed and its scary for them, another family is anxiously awaiting scan results. pray for these families please...... with love and respect Amanda
Thursday, February 2, 2006 7:56 PM
All went seemingly well today.
Yesterday Kylie came home and slept alot, woke up to throw up then went back to bed. She finally awoke around 7 and stayed up the rest of the night. She complained of some pain in her leg(thigh area), I gave her some pain medication and she was fine.....
Today, she did well, after her chemo was done she did have a very small episode of dizzieness and she started sweating. Once she layed down for about a half hour she was fine and good to go..
She has not been sick today(praise God) and has had no major complaints of pain(another praise).. All in all she is feeling very well. We are hoping to possibly send her back to school for a couple of days next week,depending on her counts tommorow........
there is a family that needs alot of prayer right now because of real bad disease progressionthis little girl also has neuroblastoma. so please pray for them... pray for your neighbors, and our soldiers....with love and respect,amanda jo
GO STEELERS!!!
Wednesday, February 1, 2006 5:37 PM
Today went rather well. We arrived at the clinic and, since Kylie had made up her mind to keep her port acsessed, we were able to right away get started with her fliuds and anti nausea meds. The day went quickly.
Kylie did wake up this morning with some pretty bad pain in her leg area. We had disscused radiation with the doctor but he has actually decided against it. Since her pain is so intermediate, the doctor is wondering if its not really cancer(persay) bothering her. he feels since we are pretty sure that the avastin is doing something, the pain could be, pehaps bone remodeling to a degree.. Point being,since the pain comes and goes and can be small or big, it can be dealt with at home with medication. So,we have decided that we are gonna wait it out(unless it gets just unbearable for her) and see how next scans look,and go from there...
there is a family right now that is going through some real scary stuff with their little girl and its all so touch and go. She too has neuroblastoma.. please pray for them as they are in childrens hosp. of phillidelphia right now.... thankyou... with love and respect Amanda
Tuesday, January 31, 2006 12:25 AM
Here we are day 2 and still nothing real exciting to report...
kylie is actually finishing up her chemo and we shall be home soon... She did feel a bit nauseus this morning, but seems to be fine now. she does tend to sleep more now, but she also stays up late!
We are just a few states away from Kylies virtual tour of the states....So, when she gets back from her trip, we'll put up pictures of all the places shes been..... Big smile!
Pray for the families here,a couple of kids are back with relapses, all our neighbors and all our soldiers.... with love and respect, Amanda Jo
Monday, January 30, 2006 3:55 PM
Well here we are at the clinic again today and for the next 4....
Nothing really to report, all is going well. Kylies counts are good and she was started on her chemo regiman today without any problems. Very uneventful and boring day! I cant complaining! One day at a time......
Anyway, Kylie is actually sleeping and we are almost done. Kylie did have her port stuck for the first time, she was a little anxious, but other than that the new port is working wonderfully....... Looks like KFC on the way home for dinner tonight..smile
There was a, what looked like, a bad accident on my road on the way in this morning, with an ambulance and fire truck there. please pray that no one was seriously injured, pray for your neighbors and our soldiers both here and where ever...with love and respect Amanda
Friday, January 27, 2006 8:31 PM
New photos!
Well I must say thankyou God, I love to be wrong!
As noted in previous journal entries, I have been extremely anxious about the MIBG scan and what I thought I saw... Well, I did for the most part see correctly BUT,what I saw was not as bad as I thought...smile.. (hope that made sense) let me back up a bit.....
Last night Kylie got a slight fever, and being concerned with a new port we called it in(anytime you have a line inside your body, infection is always a risk).... Anyway we ended up at the emergency room(our 2nd bead in 3 years..smile). At the emergency room due to miscommunication on the emergency room part ,we actually ended up being admitted for observation.. Kylie ended up with an IV in her hand ,because her port is just to sensitive right now.(she did great!) As it turns out, there were no infections and it was a small case of the flu, so she had a precautionary antibiotic and some fluids and came home today.. I also recieved hand delivered in person from our awesome team, a comparison of last months scan to this past wednesdays scan.....I also thank God for our great friends Christine and Rodney, whom offered and took little Jackie for the night, and our awesome parents for taking her today for a little while....... Thankyou so much!
We had been praying very hard about this whole antibody thing, and since it had opened and we were eligble,we figured that was our answer, so when it temporaily closed, I became frantic. What are we gonna do now?? I prayed some more and today the answer has been given to us.... I cant praise God enough for blessing us again.
We(us,and the doctors) firmly believe the avastin/irinotican chemo combo is working..... Her MIBG scan showed NO new spots and real improvement in all other lesions!!!! Make no bones about it she is not cured and this avastin most likely will not hold forever but we'll worry about that later.....Anyway , starting Monday I'm in for a 5 day weeek of driving back and forth to the clinic again..(smile, Its truly worth it!). one day at a time..
although I have delivered good news today. I also know what its like to hear bad news(most of the time its like dignosis day all over again). We were only in the hospital for a day and I happened to meet up with some clinic friends who have been there for several.. please pray for these families, your neighbors, our soldiers and each other.... with love and respect Amanda Jo
Thursday, January 26, 2006 6:31 PM
Alot to update on.... here goes
first things first.. We don not as of 4:30 have the results back from her MIBG scan. I am by no means a technician but from what I gathered and I think, I saw both hips, both knees and both ankle areas lit up.. So, we'll hopefully know soon and hopefully I am really bad at reading the scans and am all wrong on what I saw....
good news is CT came back normal, Chest xrays came back normal. MRI came back normal except for a slight sinus infection ,(which we are now on antibiotics for) and the big one.........Bone marrow aspirations showed NO neuroblastoma cells.. praise God almighty!
Her new port is still slighty tender and a bit uncomfortable but that was a small surgury so thats to be expected.....
Unexpected news.....The antibody study we were about to embark on has ben temporaily closed... There were some safety issues and concerns so, they are investigating and re-evaluating some things... This is not really a bad thing, in fact we look at it as, it wasnt meant to be just yet... We were informed this study could possibly open back up in a matter of days or weeks. In the mean time our dr is dillengtly working on an alternitive plan until that happens......
Kylie is still having some pain issues but she is dealing rather well and we have came up with alternitive ideas when managing her pain,she has some pretty heavy pain meds and unless its horrible for her she tries things like art, music, puzzles and stretching to occupy herself and not think about the pain... She is so amazing, sometimes I think if it were me I would curl up in a ball and just cry like a baby. Not Kylie she literally limps through it!
Today Kylie seems to not be feeling very well and we think she just may have a flu bug. She Threw up earlier and has a very low grade temp. I have not given her tylenol because we need to watch her fever and make sure she isnt getting any infections(she did just have a line put in and bone marrow aspirations).. One thing at a time, we watch, we wait.....
Kylie is just a few states away from virtually touring them all... we just love all the postcards and extras she gets and its such a beautiful thing.. Thankyou all who have sent postcards, trinkets, kind words and mostly prayers.. we are truly blessed! I would also like to send out a big thanks to our family members and friends for helping us out with taking care of Jackie and just being there.God has given us the best gift ever, he has blessed us with a totally awesome support system.....
There has been a few things going on with some other children and the roads they are traveing dont look so well, so please pray for those families and of course your neighbors..... with love and respect amanda jo
Tuesday, January 24, 2006 4:18 PM
Today has been a super long day. I am currently typing this from the clinic and we have been here since 6:30 this morning.....
As I have stated before, we decided to get Kylie another mediport. The clinic called yesterday and had us set up for today at 7:30 , be here an hour early... Since we live an hour away we left our house at 5:30....... all went smoothly...... at first! She got her new port and as they were about to turn her over and do bone marrow aspirates the doc noticed the port site bleeding so, he reopened it up and fixed the problem... On to her bone marrow aspirations, that too went off with out a hitch until about an hour after surgury, when we discovered the sites(back of her hip bones) were bleeding quite a bit. they ordered a blood count and platelets came back fine. they then determined that this was a late side effect of the avastin we had done 2 weeks ago. so they gave her fresh frozen plasma(stuff is like glue..) and that has so far stopped the bleeding...
She also had an MIBG injection which radiaology was kinda enough to deliver to kylie since she was kind of busy bleeding...(that was meant to be kinda funny)...
Alls well that ends well, shes fine and here shortly we shall be on our way home.....
Always pray......... with love and respect Amanda Jo
Sunday, January 22, 2006 11:05 PM
There isnt alot to report right now..
I asked Kylie if she wanted to go to school and for the first time ever, she said no,(it really suprised me!) She didnt say no because she wanted to play hookie or anything she decided that she didnt want to get picked up half day again because of pain.. She said if she couldnt make it all day the she wasnt gonna go at all.... last week Kylies ankle bothered her and she had to call home and we ended up bringing her home and I guess she doesnt like leaving once there... God love her thats a good thing...
So ,we are just gonna hang out and prepare for a long week in cleveland. Here is our schedule. Tuesday, actually isnt so bad, just an injection for her big MIBG scan(thats the one that lights up her cancer and all its ugly spots).. That scan, along with a CT ,heart echo and a blood draw will all take place on Wednesday. we also have to collect urine for 24 hours(most people collect baseball cards or stamps, not us we have to be diffrent..smile) and sometime this week we will be having a bone marrow aspiration.
We have also made the decision to get Kylie a new medi-port(a central line inside her chest). The one she has now really needs to be retired. Its had alot of wear and the very skilled nurses in oncology are starting to have bits of trouble with it.When it not only cause discomfort for Kylie but discomfort for the nurses too, its time to go.... We are scheduling her new port on the same day as her bone marrow aspiration. This is a surgury, but NOT a horrible, lenthy procedure maybe an hour or so..
Very soon we will be venturing into the antibody study (Jan.30th) and I'm a little anxious but feeling ok because the more Ive thought and prayed and prayed and thought, I feel this is the right thing to do..... Kylie is such a trooper, Shes one tough cookie and if she can actually go through it then, that makes my feelings of nervousness and such, kinda petty....
NEVER cease to pray and dont take your neighbors for granted,one day they could move.....with love and respect Amanda Jo P.S. I will post new pictures soon in the next couple of days.... and thanks for checking in over 10,000 times.... Smile
Wednesday, January 18, 2006 11:01 AM
I feel I must apologize for my previous journal entry, I hope I didnt upset anyone to bad. I was feeling rather low yesterday(sometimes, that happens..smile). We really appreciate the kindness and prayers people have brought forward. I Must thank all the people out there that have been praying for Kylie and us. Today I awoke to read some really beautiful and inspiring guest book entries. Last night went to bed with a phone call from a really great person,she called and made me laugh. Our friends and family have been very supportive and and for that I truly thank the good Lord. We are truly blessed..
Today we must venture out again for an MRI as part of protocal for doing Avastin(chemo) and as part of the hoop jumping for this new antibody study. As for this new study, yes I am still a bit nervous and scared. But, I also know everthing will be ok, God IS on our side.....
Thankyou for all your support and most important your prayers, please continue to pray for our soldiers both here and where ever they may be.... thanks, with love and respect, Amanda Jo
P.S. we are getting closer and closer to 10,000, so please check the number(torwards the bottom of this page) and sign the guest book, Kylie cant wait to see who it is!!
Tuesday, January 17, 2006 2:28 PM
This is going to be an emotional entry, I would suggest a box of tissues nearby.....
Here it is. Kylie is in alot more pain these days and it seems to come on fast, as we radiate one spot a new one shows up. A couple of days ago, her right femur hurt so bad we had to resort to perkasets(sp?)and today her ankle is bothering her. we have just fisished radiating her hip. So, we have decided after barely any real info, to go on and try another route. with a heavy heart, we have decided to give up on radiation for now and enroll kylie in an experimental antibody study here in Cleveland.. Sometime soon like jan.30th, Kylie will spend three days in the hospital recieving an antibody that will cause pain,shakes ,fevers, vomiting, blood pressure highs or lows and possible other side effects.. We have no clue if this treatment will work for it hasnt been open long enough to know or see any real evidence as to what it does....
We do have scans coming up and I can feel it in my very heart what the scans will show.. I pray Im wrong but with her pain levels and locations of that pain, I just know those scans are gonna send me into yet another day of uncontrollable tears....
James and I have thought and prayed alot about what to do and as humans this is the only straw we have left to grasp at. I cant stand to watch my daughter limp and struggle the way she does. Shes very strong and determined and knows the game better than most,yet my heart aches to take away the pain and kiss her boo-boos away...I cant do that! Although this treatment scares the you know what out of me, all I can do is pray and hope and know that Gods is definatly present. If by chance I have made the wrong decsion than I hope both God and Kylie can forgive me....
I know I dont normally say or ask this because I know someone out there needs it more than I, but could you please pray for me, I feel a bit of deppresion setting in despite my best efforts for that not to happen. This whole thing scares me and Im finding myself becoming more and more fragile, worn out and drained.. As I am trying as hard as I can to not second guess myself and stay positive but honestly I am exhausted!! Today I talked to Kylies Nurse and I slurred every other word out of my mouth, I sounded drunk... Its one of my stress signals when I start doing that.. To top things off I found out another Child has died and I am heart broken. This girl was 17 years old and that makes me angry, so all in all my feelings are are a mess today.....Tommorow shall be better......
Well this is Kylies journal, not mine so I shall end today by saying ,considering all, she is doing very well, and the baby is getting bigger and Kylie is just an awesome big sister. I am proud of my girls..
please pray, never cease to pray... with love and respect Amanda Jo Thanks to letting me vent..
Friday, January 13, 2006 6:32 PM
Today we had a clinic appointment and they drew blood from Kylies arm again. She did very well and her counts came back excellent... I have alot to say tonight, so you might just wanna grab a cup of coffee..smile....
We also met with her dr and he had some sad news to tell us. He has decided that his life needs something and that something is in Minnesota. I cried, I gave him a hug and said life does that and you gotta do what you gotta do. He will be terribly missed. To show what an extraordinary man and dr, he is , he promised to keep in touch and check up on his beloved patients. Hes not planning his new journey until late March. He also promised to be here for Kylies 10th birthday......That means more to us, than I think he will ever understand. Minnesota is a real lucky place, and I hope they take good care of him ,when he gets there.
Last night Kylie stood up and began to cry with pain, she scared me for the pain this time was very sharp and in her other leg. We talked about possibly more radiation,with the dr and its a wait and see, since there is a lifetime cap on just how much radiation one can have. So, until then, we decided it was time for something stronger than just tylenol to help with pain. Hopefully we can manage what we can.
we also discussed the possibility of doing a study we have never tried at all before and it just opened yesterday at the Cleveland Clinic. We had a very long drawn out, frank talk with the dr and after long, very hard thought and consideration. We (James,kylie and I) decided it was worth a shot. We got more info(as in paperwork)and we will be signing up as soon as we can... Once we are signed up and ready to go, I will post all the information, side effects, etc.......... It does involve 3 days in the hospital..every 3 weeks.....
Something else I once again feel the need to address..RUMORS... Once again I have been subjected to rumors regarding my daughter.. I must say Kylie is not "soooo sick that she doeesnt leave the house very often" and, she certainly is NOT on her "deathbed" There has been no "Timeline" put on her life, for the doctors nor I play God, and we are not "so busy" that we cant participate in certain events.. I hate to keep writing about this and I know it gets old, I also know, no matter I what do or say or write, rumors will be generated despite my best efforts to quash them... I am asking with all in my heart, that when discussing kylie and her cancer, please be mindful of small childrens ears. I am not so vain to think people stand around talking about Kylie 24-7, but if the subject should ever come up......
Please continue to pray for your neighbors and all around you.. Our soldiers here and wherever they may be....never cease praying.May the lord carry us all through our lives....with love and respect Amanda Jo
P.S. Kylie is very excited, to think that her caringbridge page has almost been read or looked at, 10 thousand times(number towards bottom of page). she would like it,( and it would satisfy our curiosity) if when you visit, see what number you are and if you happen to be number ten thousand PLEASE sign the guest book and let us know who you are.. Thanks a million
Tuesday, January 10, 2006 2:59 PM
Our last day of radiation is today...yippee!
Today we came in and had blood work done, only we(James and I)decided that Kylies port really needs a break, so we had them acess her blood, through a vein in her arm. I AM SOOO PROUD OF KYLIE! SHE HANDLED BEING POKED IN THE ARM VERY VERY WELL! At first she was very reluctant but she didnt move and she barely whimpered. What a long ,long ,long way we have come in 3 years. Her counts came back good, platelets were at 88, normal being 150-400 but thats good for her.
We have decided that we are gonna send miss Kylie to school tommorow. She will have to wear a mask but what the hey, shes been cooped up long enough now.....
thankyou to all who have sent postcards from the diffrent states. Kylie is very happy and excited about them.. She is well on her way to have virtually visited all 50 states and Canada. What a wonderful blessing! Of course now she is even more excited about visiting all the states someday... Praise God for her energy and enthusiasm....
Well her radiation appointment is not until 4:15, so we are gonna go get something to eat and hang out till then...
Please pray for your neighbors and friends and family and everyone you have already met and those you will meet.......
Saturday, January 7, 2006 3:47 PM
Well, here it is Saturday and kylie is spending the day(not night)with James in the hospital, recieving her last dose of chemo for now...
We will be finishing up radiation on Tuesday and the will be scanning the week after that... I really pray and hope that this chemo regiman irino/avastin does something. I know this particular chemo is by no means a cure but I do pray it acts as a, SDC(stand down cancer) agent.
My husband and I are in the process of seriously considering, and weighing the pros and cons of a study that our doctor plans on opening within the next couple of weeks. I cant tell you alot about it, because I dont have all the details myself yet, but it does sound like it could be promising(just like everything else we have tried). I just hope that with each promising treatment, we get closer(or even find) a cure.Our big thing with Kylie is quality of life and we are currently trying to figure out if this new study is worth it......
Jackie is doing much better she is on a antibiotic and dimatapp.. So, far she is doing okay and her congestion is easing up....its rough with a little one ,they are so helpless and cant tell you whats going on(which in turn makes me nervous).. Im sure it will all be fine, I survived being a baby,and kylie survived being a baby with me as her mom....smile So Im sure Jackie will be just fine....
I am at home in my jammies right now. I told James yesterday that after the long week of traveling, I have no intentions of even getting out of my jammies this weekend..smile
please pray for your neighbors and never cease praying..... with love and respect Amanda Jo
Friday, January 6, 2006 10:52 AM
I am gonna go back and start with yesterday...
Yesterday, my mom brought Kylie to the clinic. Where for the most part Kylie did well. She had a slight reaction to the chemo, nothing real serious, she did fine! She had her radiation on her hip and wrist and I am happy to report that on a scale of one to ten(10 being, horrible pain) kylies wrist pain has went from a "15" to a "1" since radiation started.
I stayed home because of a appointment that could not be rescheduled and James took Jackie to the doctor, where we discovered that Miss Jackie has a slight ear infection and a touch of bronchitis.... God bless my mom, she stayed the night last night and helped out with the baby.. Kylie was a bit dissapointed, to find out per doctors orders, she must stay out of Jackies face.....
We have also been having a few minor problems with Kylies medi-port, once again nothing major... We may or may not need a new one. Its a wait and see thing.... If, we do end up needing a new one, that would mean a small surgery.. Not worried, one day and one thing at a time.
Okay todays report, nothing really, so far things are going well. our radiation appt. isnt until 4pm and they are so booked over there, they cant seem to get us any earlier. We just get done and have lunch and then go do radiation, and then go home........
Heres the future plan(not really a plan, because if I call it a plan something will most likely go wrong..smile), Tommorow, we will be here again for her 5th dose of chemo(we will be observed in-hospital, since clinic is not open on Saturday.) then we are off of chemo for 2 weeks, with only count checks at the clinic.. we will be finishing up radiation on Tuesday. after all this we will be scanning again...
Please pray for your neighbors and everyone you meet... with love and respect, Amanda
Wednesday, January 4, 2006 10:26 AM
here we are in Cleveland, all hooked up, receiving anti- nausea meds and eating a Mcdonalds breakfast(only thing she'll eat from Mcdonalds,anymore)...
at around 4pm we shall be heading over to radiation to get zapped and then head home.. Her wrist pain has significantly increased since yesterday. Todays radiation comes as a relief to both Kylie and myself...
After breakfast, its time to play cards(kylie is the rummy champ,I think...smile). We also have, "blink", "triversity" and a dice game to play. I must say Kylie has a very strong mind. These games can be hard to learn sometimes and she picks em right up.
Jackie is sick today, poor baby is in misery with congestion and to top it off shes teething some.... Shes with my mom today, because shes so sick, also today the clinic is a hoppin.. lots of appointments today!
Please pray for your neighbors, The families of the coal miners(I have no idea what they are going through) but I'm sure they could use some extra prayers right now, pray for our soldiers, both here and wherever, pray for all the families here at the clinic today, pray for them all the time! Never cease to pray..........
Tuesday, January 3, 2006 2:42 PM
Here we are at the clinic and so far all is running rather smoothly. Kylie came in ,had her port accessed and started fluids. Chemo came on time and she is already on her second bag of chemo/Avastin. We will be continuing chemo until Saturday.
Kylie had a couple of good friends visit her today, she really enjoyed it.. thanks K and R............Have fun at school!
We then will head over to radiation and do her mapping of the hip area(basicly, they will draw on her with markers to figure out where to zap her all week). Unfortunatly, we are adding her wrist to the radiation plan, it has been causing some pain for the last 2 days. NOT excruating pain, just mild and intermitten. Our plan is: radiation to the full right hip area and now her right wrist. We keep going at this rate and we should just do full body radiation and be done with it. Abdomin,knee and skull, now add hip and wrist... how funny, in a not so funny but, funny way...smile
In other news, Jackie brought in the new year by rolling over from back to front and then back again, she'll be crawling in no time... I think I'll wait and see how things go before I start pulling my hair out... smile...
All is well in the Houtchings household, so far so good and it hopefully will go smooth all week......
Please pray for your neighbors, and everyone you meet.. with love and respect, Amanda Jo
Saturday, December 31, 2005 12:01 PM
and the lord said "My dear sweet child ,those times you only saw one set of footprints,I did not leave you,it was then that I carried you."
I say, THANKYOU Lord for carrying us into a new year.
This past year(2005) has been remarkable for us. we have celebrated our birthdays(9,28 and 29), and the birth of Jackie.
Its been tough this year with relapses, but all in all I cant and wont complain because its also been a very blessed year....(for we are such a strong family)
Happy new year to all! May the lord bless this new year with wonderous things..........
With love and respect Amanda Jo
Wednesday, December 28, 2005 6:07 PM
Yesterday we had a doctors appointment and we have good news and not so good news....
Good news first.. Kylies counts were great and should hve no problems starting up chemo again on the 3rd.(if you can call starting chemo good news)....
Our not so good news actually started the Christmas day. I noticed a slight limp in Kylie, but ya know we live with her and see her all the time and its kinda hard to spot so I had to ask other people if she was limping or if it was my imagination. Well, NOT my imagination, she IS limping and within 24 hours it has gotten very noticble and has even started to bother her with intermitten pain. Shes once again having trouble getting off the floor(although that doesnt stop her from getting down there, SMILE).anyway, with this in mind her doctors have decided to add radiation to her chemo /avastin regimen next week.
So, our schedule is going to be as follows: from about 9 AM till about 5 or 6 PM we will be in Cleveland all next week. With chemo first and radiation to the right hip area after.... Other news we found out, (I have to kinda laugh even though its not really funny) but the "Bandaid" strip of hair kylie is missing , most likely will never grow back and if it does it could take years.......
Well anyway, please pray for your neighbors and all those around us..... I most likely wont update till we start our chemo/radiation run.. So may the good lord bless us all with a wonderful new year.....with love and respect Amanda Jo
Sunday, December 25, 2005 10:31 PM
Merry CHRISTmas to all...
Today was a great day for the Houtchings household. We have been so very blessed.
I would like to give thanks for my family and the CHRISTmas we celebrated together today. We are grateful for all the presents we recieved, we are even more grateful for the presence of the lord, in our lives.
We head back into Cleveland Tuesday for counts and hopefully if all goes well, we begin our chemo/avastin regimen again on the 3rd of January.... (What a way to start the new year). After that we will scan and hope for the best(Im already a little anxious, Kylie is limping slightly again) The lord is in charge and he will carry us through.
Kylie made the paper again, the Sandusky Register did a follow up article and its in todays paper or Im sure on thier website. It was very nice...
Please pray for everyone you meet.. with love and respect Amanda Jo. Merry Christmas all...
P.S. thankyou for all the prayers... Kylies friend Lana Beth made it home on Christmas eve after 15 (give or take) days in the hospital.... Praise God!
Tuesday, December 20, 2005 2:42 PM
New pictures have been added..
Today was a great day! We went to the clinic and Kylies counts were great, so that means we dont have to start her shots at home.... YET, anyway.... We'll take it!
We were greeted at the clinic by wonderful people, who were there to spread cheer and presents for the kids. It was so lovely.
First, all the kids were visited by representives from the U.S Marshals and Kylie recieved some pretty cool art stuff, activity books and a little badge pin(I do believe shes been deputized..SMILE). It was way cool.. Then some fraternity Boys from Heidleburg(I dont think I spelled that right, Im sorry) college, Kylie recieved really neat things from them including a purple and pink butterfly blanket that these boys made themselves.. How neat is that!!
Speaking of college boys, Kylie asked me to send out a request for a certain college boy from Michigan to come visit the clinic sometime soon.. (you know who you are)
I did not cry, I wanted to though, but not for sad reasons(well some sad but, mostly pure joy), because it just touches me so much. These kids are so brave and strong and its great to see them being reconized. Its great to see these wonderful children smile and laugh and play despite the fact they are fighting for their lives, and I thank God everyday for them. These families at the clinic are just that extended families and , it seems we all lean on each other alot, in one way or another. We've made alot of friends in the last 3 years and , some friends finished treatments and we keep in touch and other friends We have lost. please pray for these families.
pray for your neighbors, May God bless us Everyone.
With love and respect, amanda jo
Friday, December 16, 2005 1:57 PM
Today is going really well. We are almost done with this round of chemo. Isnt it funny how things start running real smoothly when your just about done. Now that we got it down, we are done..SMILE! Until a couple of weeks from now, when we do another round then shorly after that we scan again and pray for the best results....
Anyway all is going well, Kylie is not experiencing to many major side effects and so far her counts are doing well. Praise God!
No major plans for the weekend, just gonna catch up on some household chores, and just chill out......We need to put a few finishing touches opn our christmas shopping and then be all done to celebrate the birth of our lord....
Please pray for a speedy recovery for Kylies friend Lana Beth and pray for your neighbors and each other..... with love and respect Amanda Jo
Thursday, December 15, 2005 2:30 PM
All is well today at the clinic.. At around noon, kylie and I walked into the lobby and with a big tado, Kylie recieved her 3rd place prize, a framed certificate and her artwork now also in a very nice frame.. I will have pictures to post soon.... She did great, and afterward, Kylie and I shook the hand of the 1st place winner and congratulated him.. How exciting for him and his family, come May they will be taking a disney cruise. We are thankful for organizations like "the littlest heroes" that put this whole contest together.........
We are actually all done and ready to run out the door. So far kylie is doing real well, and tommorow we will do her 2nd dose of avastin.... So, tommorow ,there will be 2- 90 minute bags to be hung, it will be our last long day for the weekend. We then start neupogen shots on Saturday and come back here tuesday and Friday for check ups.....
Well time to go home.. I will put up pictures soon. Please pray for your neighbors, your families and those all around you. A special request for kylies little friend Lana Beth........ with love and respect, Amanda Jo
Wednesday, December 14, 2005 2:52 PM
New Pictures!
All is going well. We are here at the clinic and have been since 10:30 this morning but, things are moving along. First Kylie recieved a dose of benedryl and tylenol,then her half-hour bag of fluid was hung, then her half-hour bag of anti nausea medicine was hung, then the chemo bag was hung and is now done(that bag lasted 90 minutes). We are both awake now...Smile. Yep you read that right ,Kylie and I both napped through all those bags.... Next they are hanging her Avastin(our new drug)and that also takes 90 minutes to run then, she gets about 15 minutes of fluid and we will be all done....
Tommorow wont be as long, we will only be getting one 90 minute bag instead of 2. Tommorow Kylie and her fellow winners will be presented with their prizes. How exciting.
Last night the CHRISTmas program was pretty cool, the third graders did an excellent job.
I'm hoping that Kylie feels good through the week, I would like to take her out and do some little shopping for odds and ends.....
All is well, please pray for your neighbors, your community and our wonderful soidiers and their families..... with love and respect Amanda Jo
URGENT PRAYER REQUEST:Please pray for a very awesome little girl named Lana Beth,(who also has neuroblastoma), that Kylie met and became friends with in New York. Shes been through some rough treatment lately and is not feeling so good! Please pray for her to feel better and for her family to hang in there and stay strong.
Tuesday, December 13, 2005 11:52 AM
Well, here we are in the clinic today. Plans have changed, due to good CT results(clear) and not so good MIBG results(progression). We have decided to for now, while I do some research on a couple of things that sound promising, to start a chemo that we've done and add a new drug called avastin. I pray that this ,if nothing else holds her cancer back until, either a cure or something else that works longer comes along. So, we are gonna be here everyday this week recieving the chemo. Which I'm afraid also means that Kylie will be missing school the rest of the week(sooo sorry). She will however, as long as we are out of here in time, get to her christmas pagent tonight...
Other than that, all is well in the Houtchings household and we are continually being blessed...
Not sure if I've shared this but the school has decided to send Kylies purple bands to all 50 states and Canada, In light of her dream to vist all 50 states, In return they ask for a post card back. Well the school has given kylie a top loading scrapbook to put all her postcards in as they come.... Well, God bless everyone! They are sending her more than just postcards, they are sending her souveniouers, letters,traveling maps and other really cool stuff... We are so suprised at the array of neat and clever things(S.dakota sent her bison jerky, Vermont sent her maple sryup). So with a great big thanks to the school for masterminding the project and to God for the 50 states(and canada)... And Thanks to all who are sending back the postcards..
Once again I am not wearing my Steelers shirt and a Browns player is visiting the kids,here at the clinic.... Smile! (all browns fans,dont be offended,I'm kidding). Kylie and Jackie just had their picture taken with Braylon(not sure of spelling) Edwards no# 17. Even though neither of them are big football fans, its kinda cool to meet the diffrent athletes.
well thats all for now, please pray for your neighbors, your loved ones ,yourselves, our soldiers, and for each other and count your blessings. I pray that CHRISTmas goes well for all this year....... with love and respect Amanda jo
P.S. P.S. P.S.
It is now 4:30PM and kylie is just now finishing chemo and getting flushed.... So as we try to get home(its rush hour time, and we live approx.1 hour away..smile!) and get changed and go out to the school for her program...... Lord carry us safely...
P.S P.S. P.S. P.S.
We made it home safe, Just in time for the play . We came home, changed and off we went. The 3rd grade did an awesome job. I was worried about Kylie getting sick and they arranged for her to stand on the end but good old kylie refused and proudly sang with the class... praise God..... they were awesome.........
Thursday, December 8, 2005 9:02 AM
This just in.... Kylie has won third place in the littlest heros art contest through the cleveland Clinic.They just called and told us the cool news, she won a 500 dollar gift certificate. I dont know where the certificate is to yet, they want to present her with her prize sometime next week. How exciting for Kylie I am so proud of her!!1
I just sent Miss Kylie off to school. We dont have to go back to the clinic till monday or tuesday(I have to call them).
I'm trying to adjust to life without George, everyone seems to be handling it well except me, I mean I'm handling it ok I just feel so bad and sad. I worry about our other cat now, Yesterday I actually got down on the floor with Little bear and explained Georges death to him(I'm not crazy really! smile). Well anyway, I'm a little too sensitive sometimes and I'll be fine in a day or so.
Yesterday was so rough , I ended up soooo sick, I caught some kinda of stomach bug and it was the worst thing for me. I was in a lot of pain and nausea and just really sick. My way cool sister in law came over and watched the baby and kylie so I could lounge around and whine. Which is pretty much what i did! Enough about me, this is not Amandas website its Kylies so here is the news on her MIBG scan...
As you may know CT showed improvement and decreased stuff in her head area, so thats a good thing. However, the MIBG showed some progression in her left hip and femur. The spots in head are pretty much gone (not completely gone, just alot smaller), as with the spot in her rib cage area but, her hips and legs are just getting the brunt of it I'm afraid. the progression shows us that our current chemo regimen has helped to slow things down but is no longer working and we are now onto our next plan. Honestly I'm not 100ure what are next plan is, we were talking about trying a relatively newer drug and going from there... I'll know more next week..
Please pray for your neighbors and our soldiers and soldiers families espescialy as CHRISTmas nears.. with love and respect Amanda Jo
Tuesday, December 6, 2005 7:09 PM
Today was a good and bad day in one... Godd news first Kylie had a cat scan today and we already got the prelimanary results back. I am not good with big medical terms but the words I most definatly could understand were, "significant improvement" "no new", "decreased/improved", so, all in all her scans were good Tommorow however Is the big MIBG scan that tells us alot more. I am very pleased with these results. Thankyou Lord.
Now for the sad news, Our beloved pet of 2 years, george has passed away, we are very sad and although he was just a cat to some he was very much a part of our family and we miss him terribly. George weighed 24 lbs and had a respitory infection that his weight just couldnt handle. James rushed him to the vet after I came home and they tried to save him but they just couldnt. He was gone. We rescued George from the humane society a couple years ago and he was the most docile, loving, believe it or not, enegetic cat. We are thankful for the memories and joy he has brought us. Telling Miss Kylie was very hard, but she is ok. It gave us a chance to talk about death and heaven and such and all is ok. She is very sad but takes comfort in believing that george as we speak is laying jesus' sandles...smile....... george loved shoes. Please be sensitive, Kylie is feeling a little low, but in a few days I'm sure she'll be fine... Honestly, its harder on me than her because well I'm a bit sensitive to the subject right now........
anyway I have put in some pictures
Today was the christmas party at the clinic and it was amazing. kylie got a video now player and a hillary duff cd to go with it.....
Please pray for your neighbors and the homeless, with love and respect Amanda Jo
Friday, December 2, 2005 1:54 PM
Here we are at the clinic, I was right, we are getting platelets. Kylies platelet count was 10 (the norm being 150-400).All is well. Kylie will most likely here in a bit, start getting real crabby and then hopefully fall asleep from the benedryl she just recieved. Then when she wakes up, she'll wake up with a "benedryl hangover". As you can see today will be a long drawn out day. It hasnt stopped snowing since I got here at 11am. By the time we are ready to go it will be rush hour and I hate rush hour, I hate it even more in the snow!It will be ok though because God will get us home!
The school has ordered purple bands with kylies name on them and they are in and I really like them. The school came up with this really cool idea about sending the bands to friends/family in diffrent states and having them send back postcards of that state. This way Kylie can say shes been to all fifty states... They gave her a scrapbook and a map to keep track of all her states... How cool is that?!! We are very blessed.......
Next week we scan, not sure whats gonna happen there. I would be happy with "same" or "stable". Of course I would love to hear "No evidence of Disease", but I will remain reality stricken for now. for the record though, Lord whenever your ready to cure childhood cancer..................
please pray for the people driving in the snow this winter , your neighbors, and our soldiers both home and away. with love and respect Amanda jo
Wednesday, November 30, 2005 3:36 PM
Sorry its been a bit since my last update. We went to the clinic yesterday and her counts came back relatively low. She is nuetrapenic,meaning masks, watching for fevers and all the same stuff we've done a million times. I am in no way complaining, honestly this is our normal.
Today I am in a relatively good mood, Kylie is in awesome spirits and so are Jackie and James. All is well in the Houtchings Household.
Tommrow, Kylie cant attend school because of her counts, but I am gonna take her up there to do her secret santa shopping(she'll just wear a mask), because let me say if youve ever recieved a gift from a child that bought it from a secret santa shop, it is more precious than the most expensive gift in the world. Last year I got a beautiful ornament for the tree. I'll never forget when Kylie was first dignosed, the school was so kind, they let her come in after school was out, because she was neutrapenic then too. (I guess history does repeat itself). well anyway, she got my mother in law a deck of old maid cards, my father in law a wooden train, my mom got an angel, my dad got a tool belt and James got a tool kit(that probaly could of went with the belt..smile) my mother and father in Indiana got pretty ornaments for thier tree. I cant wait till Jackie starts school and can do neat stuff too.. Soon enough, too soon in fact I know shes only a few months but before I know it she'll be 9 just like her sister.... look out world!
Anyway, kylie goes back to the clinic friday and will most likely get platelets.( quick fact: in the last 3 years my best guess is kylie has recieved over 90 bags of platelets)
please pray for your neighbors, complete strangers, the homeless and our soldiers both here and there... with love and respect amanda jo
Saturday, November 26, 2005 11:37 PM
We survived the day after thanksgiving shopping. Actually it wasnt horrible, we werent out at 4 in the morning waiting, we played it safe and went more in the afternoon. We are almost done with Christmas shopping.
Kylie was feeling pretty good today. She did just a few moments ago having a wave of nausea hit her and she did throw up ,but now seems to be fine. I feel so blessed to have her. I just love her to pieces.. smile
Kylie made the paper(sandusky Register)yesterday and that was cool, it was a very nice article written about her and the community.
We would like to thank an organization from Cleveland that has just recently helped us out.
I would also like to mention a thanks to Bettchers ind. for being so supportive, caring and helpful.
A thanks to our Western Reseve community for all they have done.
A big thanks to our family and friends who have just been there.
I want everyone to know how grateful we are for the support we have received...
Pray for your neighbors,the homeless and our soldiers(both here and where ever) with great love and respect, Amanda Jo
Thursday, November 24, 2005 9:37 PM
HAPPY THANKSGIVING
We just got home from a very good dinner at James parents house. All is well. We are thankful for the family time. We also stopped in and saw my daddy, he is doing well. I was sad for him though, this is my first thanksgiving without him deep frying a turkey for us. I miss him alot. The holidays are seeming to be tough for me this year for many reasons, My dad,and my daughter. I have many things to be thankful for but I cant help also feeling a bit sad and overwhelmed...
Other than my own self pity, all is well here. I think I'm coming down with a bit of the winter blues.....enough about me.....
We started Kylie on her shots again, as she is becoming a bit neutrapenic.. Last night and a little bit today she has been experiencing some side effects from her chemo yesterday.. She did not get sick, but she did experence some neuropothy(numbness) in her mouth(thats a strange thing) and some in her feet and yesterday she was reduced to tears for just not feeling well.. other than that shes been handling all very well.....
We will be scanning in a couple of weeks and then venturing on to a newer drug. I dont have alot of info yet so as soon as I know more i will update more on the subject...
pray for your neighbors and all those people(including us going out and braving tommorow(black friday). My mom came through her surgury fine and will be coming home tommorow. A praise and prayer for my friend sam who recently had an emergency c-section and delivered a healthy baby boy. with much love and respect amanda jo
Tuesday, November 22, 2005 12:49 AM CST
Here we are at the clinic. we are starting chemo today and tommorow. Today we will be getting our "general bean" as Kylie and I like to call it... What a dreary day, as it is now snowing outside.
All is going well today. Kylie feels well. Here are some more things we are thankful for.....
We are thankful for our doctors, who haven been given knowledge through God to aid in healing of the sick.
We are very thankful to be alive and living.
We are thankful for all the blessings we get and will receive in the future.(Thankyou Lord)
We are thankful that we have so many things and people to be thankful for......
Please remember to pray for those without shelter as winter sets in(pray for them even in warm weather), pray for your neighbors and our soldiers, both home and away. Please thank the Lord for all his blessings. With much Love and respect Amanda jo
Sunday, November 20, 2005 7:24 PM
With thanksgiving coming up I think each day I would like to share some of things we are thankful for....
first and most importantly We are thankful that Jesus is a part of our lives, and he blesses us constantly..
I am thankful for my husband James, with out him I dont really know where kylie and I would be, without him Jackie wouldnt be here and without him I would have never known love and all it has to offer.
I am thankful for kylie because she is so beautiful and courages and she teaches me things.
I am thankful for jackie because she to is beautiful and someday will also teach me wonderfulthings, as i hope to teach her.
I am greatful for all the parents in my life(I have quite a few) for each one one teaches me diffrent things about life and growing up...
Kylie is thankful for "my family,and friends because they are always there for me"
Kylie is thankful for"everything"
The show was way cool, Kylie enjoyed herself very much and tommrow we venture to dave and busters for lots more fun.... Tuesday we start chemo again and day by day.....
Please pray for your neighbors, our soldiers both here and there.. My mom is having surgury Tuesday so pray that goes well, ,Please pray my dad keeps recovering and pray always for each other.. with much love and respect Amanda jo
Saturday, November 19, 2005 900 AM
Today is another good day! we are all getting ready to venture into Cleveland but, not for an appointment. We are on our way to see Little Shop of Horrors at the Playhouse Square.. The baby of course will be visiting with her fun grandparents (James parents). Kylie, James,Grandma(my mom)and I will go see the show. We have excellent seats, 5th row center,(we had 4th row center when we saw phantom last year and we could feel the heat from the chandlier ) so this should be a real blast!
Last night, I must admit we all stayed up pretty late(after midnight). We had some friends over and while the kids played ,the adults also played. We played a game of taboo, its a fun team game. We played girls verses boys and well ok, the boys one. Not for lack of trying on the girls part!!.. We had a fun time. We are blessed to be able to hang out and not be consumed by our situation. To our friends I wannna say: Thankyou for being our friends, thankyou for treating us like normal people and most of all thanks for just being there!
Here is our plan on Tuesday and wednesday we begin our chemo again and then we will be scanning in a couple of weeks so please keep the prayers coming....
pray for your neighbors and our soldiers. take care and may god continue to bless us all. with love and respect Amanda jo
Tuesday, November 15, 2005 9:13 PM
NEW PICTURES... NEW PICTURES!!!
Today was a good day. Kylie went to school and enjoyed herself very much. praise God , honestly she was getting a bit cooped up and started getting her I'm 9 and bored atitude problems. Needless to say we were all glad she returned to school.
She is starting to limp again, which of course makes me anxious,and nervous but well what can I do except, just pray that its not......
We have a plan at the clinic, well not a new or better plan but something.... We plan on starting chemo again on Tuesday and wednesday. Then scan in a couple of weeks to see where we go from there. Honestly there really isnt anywhere to go or try so heres my prayer and hope. I pray that her scan will read "decreased" disease or "stable"... Anything that would give us more time to find something out there that works better, if not a cure. The reality is that unless something happens now thats the best scan news we could get. I know in my heart that she just has to much cancer in her body for a scan to say no evidence of disease, and we already know that this particular type of cancer likes to become resilant to chemo. So, My prayer is simple: Lord whatever your will is I respect, I'm just asking for time, and in that time if you decide to cure her cancer(and all childrens cancer), that would be cool....amen P.s. thankyou for all our blessings, thankyou for our friends and family and most of all Lord we thankyou for each other.
Today is a good day... Please pray for your neighbors, with much love and respect God bless and take care... Amanda Jo
Monday, November 14, 2005 3:23 PM
Hello all, as promised I must finish my story about what happened on this very day 3 years ago. But, first I must tell the world our good news! Today Kylie went to the clinic and I was prepared for a long day of platelets and low counts and to my great(praise God) suprise, Kylies counts have came up! She did not need platelets or anything and per doctors blessing may return to school! Now a week ago the doctors were soooo positive that her counts would be low, and she would be neutrapenic for at least 3 weeks. Once again my brave awesome child has defyed thier predictions. We are absolutly, positivly blessed(thankyou my dear Lord)!
Now, to step back in time......Today November 14th we walked into the Cleveland Clinic and headed to the MRI dept. with fear in our hearts. Since Kylie was only six, they determined that she needed to be sedated for this scan. After her blood curdling screams, she had an IV in place and sedation stuff was given. With her asleep the horror began......
We sat there and watched from a little room as her head started showing on a computer screen. The technician actually stopped the test to call someone and the room was suddenly filled with people. I heard the word tumor, but I didnt hear the word tumor. I remember feeling sick and out of control as my heart felt like it was swelling and about to burst, I had to leave the room, I needed to smoke! I went outside and was followed a few minutes later by James who was also getting impatient because at this point, no one is really saying anything to us directly. We clear our minds a little and go back inside, only to discover they needed to scan her abdomin and move her to another machine. As they scanned her abdomin in another room with another machine, I was clueless, and in a complete panic and once again I heard but didnt hear the word tumor..
I went to a payphone outside of the MRI labs and called my mom at work and I remember saying they found the "the T word" . My mom said I'll come after work.
Now Kylie is all done and they are saying the neurologist wants to see us, so while Kylie was still asleep and they had taken out her IV. I tried to run upstairs across the buildings to the neurologist office only to be told he needs to see "all of you". Why why why??? I didnt understand, my heart gave way to that feeling again and this time , dizzieness and a weird fever suddenly took over my being. Its the only way I can describe what was happening to me. Finally after 2 hours of Kylie sleeping(and James and I pacing and taking turns to go outside and smoke). I couldnt take it anymore , wake her up! We woke her up(that was not a prettty sight) and put her in a chair(a wet ,limp noodle had more cordination than that child did.) we once again ran upstairs across cleveland to the nerologist room on the 9th floor.
I honestly dont know what he said to us, Kylie was screaming and throwing a hungover fit. I heard the word cancer and next thing I know, I woke up on the 2nd floor oncolgy floor(I didnt pass out, the elavater trip between floors is a complete blur to me)To top things off they needed to put her IV back in. James and I ,at this point were in no condition to help hold her down again. We stood just outside the door... those ear peircing screams will haunt me till the day I die.....
Next thing I know from there was , we somehow managed to call our entire family and we were admitted and with our entire family gathered around(about 20 people) we were all told. This child has cancer and its bad and whatever else they said....
We then repeated our story ,about how we ended up at the cleveland clinic, about 100 times to diffrent drs and nurses for the next 11 days.
We began our journey into this world known as cancer with surguries, chemotherapies,tests, scans and all kinds of medical terms, procedures and protocols.....
Its funny(not really) but I remember thinking weird thoughts like... Oh my gosh I need to call the school, We are gonna miss our parent teacher conferences. And other thoughts like I need to make my car payment. My very insides felt like they were all tied in knots and my only daughter was laying in bed half drunk from anathesia and confused by all the sudden attention... Here I was thinking about car payments and teacher conferences.....
She was put in Room 16. The very last room on the hall, we were forced to walk past all those other rooms with sick kids in them. We were forced to realize that our child was now on that very same floor with those other kids.....
She was now one of those kids....
Here we are 3 years later, just as strong as ever and thanking the good Lord for all our wonderful blessings!
I admit I never really gave any thought that such a place exsited, even though you know they do. you never really think about them without reason.......Now I pray all the time for those kids in those rooms.
well anyway, take care and pray for your neighbors and all those kids in the hospital right now, possibly going through the same(sorta) ordeal as us(I hope thats not the case) God Bless
With love and respect, Amanda Jo
Wednesday, November 9, 2005 11:47 PM
Today was a great day! Kylie went to chuckie with a couple of her girlfriends and had a blast! she says it was the best day of her life! We have been blessed, she has alot of those days! I will post pictures as soon as I clear it with the other girls parents. Thanks Chuckie Cheese and Western Reserve for giving kylie a best day ever. I must admit I held back but when I got home I cried, not because I was sad ,but because it was such a fun day and everyone was so good to the girls while we there. even us adults had a pretty good time. We all ate played and conversed and it truly was a blessed day. I have a confession, I used to take days like today, fun days, for granted and now its all so precious.......
I came home only to discover Kylies doctor called and she is officialy nuetrapenic. We started her shots today and will continue with them until they tell us to stop. I'm glad I let Kylie go back to school after her outing, because she wont be returning for a few weeks at least, per drs orders.. I also took little Jackie to the dr and she too is sick with a cold. I have to laugh because I took the baby in and I was the one who got a shot. Yep I got a shot, the flu shot that is. The doctor said me getting the flu shot was the best thing I could do for Kylie and Jackie, so I did.... I will post new pictures soon
pray for your neighbors and God bless each and everyone who reads this, Take care, love Amanda jo
Tuesday, November 8, 2005 10:38 PM
As promised I will finish my story on the 14th. As for todays news: Kylie went to the dr today and all went well. Her counts have dropped, so it most likly she will be neutrapenic with in the next few days. The plan discussed today was to go ahead and give Kylie her last dose of the chemo gemzobeen on Thursday and then start the neupogen shots on Friday. The neupogen shots are administered daily here at home by myself or James. These shots are supposed to help increase her counts, basicly so she wont be neutrapenic for a long period of time, Kind of an immune sytem booster. We'll see where we are then. I dont have any clue what our next move is, Its a day by day play right now........
Tommrow Kylie will be going to chuckie cheese for a couple of hours. She will most likely have to wear a mask. Not that it really matters at this point we all are fighting colds,kylie and the baby included....
Pray for little Jackie, her cold is making her pretty miserable, and I hate when babies are sick, with Kylie she can say ,hey Im sick! With Jackie all I get is a waaaaaaaaa.... Well anyway , pray for your neighbors and your neighbors, neighbors... God Bless
Monday, November 7, 2005 10:23 PM
I know I updated today already but I feel the need to update again but not on the present but the past. Allow me to share a very personal journy starting around this time 3 years ago..........
It was around this time that we started seeing a change in our 6 year old daughter. She started to limp, not a great limp and something that wasnt really all that noticble really. At this time Kylie was your everday active kid, she was after all in acrobats and school. We thought she had a pulled muscle or what have you so, we really paid little attention.. She suddenly as if over night became quite difficut and started wetting the bed.(later to know that having cancer in your adrenal glands can cause mood and behavior issues). Her limp became worse over a couple week period. We started taking her to local doctors who said allergies. It wasnt till one night, I was called at work(I worked third shift in a nursing home)by my babysitter. Kylie had awoken in the middle of night screaming of leg pain and a wet bed, she was taken to the emergency room,. She was seen and once again had an "allergic" reaction with hives to something unknown and was given benedryl and sent home. A few days later we had noticed her eye to be droopy and once again started calling drs. This time a local dr suggested a local nuerolgist because she couldnt explain the eye or the limp. We also had her tested for lyme disease(similar symptoms, the internet should not be used as a dignosis tool) .
On my way home from work one morning I prayed for an answer and as if God was yelling at me, I decided to take her to cleveland clinic. Well James came home shortly after me and said He was praying in the car and he thought we should take her to the cleveland clinic.. If that wasnt Gods personal touch then I dont know what was.... We called and got her in that day........ We spent all day going from test to test with an MRI scheduled for december 18th, unless things change the drs said but we have no answers....... On November 8th to be exact, kylie came home from school,her limp so bad by this point the bus driver called our house and wanted to make sure Kylie made it down our driveway ok. Even then Kylie never complained ,she couldnt get off the floor or see very well from her one eye. I called the school only to be informed that Kylie was getting headaches but didnt want to call home so, she sat for a little while and then went about her day. They were pushing her around in a roller chair. (God bless the school) I immediatly called the cleveland clinic and they right away rescheduled her MRI for the only open slot, and they could only do her head on November 14th.... 6 days away..... Ok We gave her tylenol and silently prayed.... I remember crying one night to James what if its leukemia? (I guess I knew in my heart it wasnt right)James said to me its not leukemia....He was right it was worse..... dont get me wrong, cancer is cancer is cancer but leukemia has a way better survival rate......... hence our scary,sad, nervous, anxious journey began... Not to leave you hanging but I shall finish this story on Nov. 14th................
pray for your neighbors.... with much love and respect, God bless
Monday, November 7, 2005 11:47 AM
The weekend went well. Kylie had gotten a little nauseus on Friday but it passed. She spent the night with my mom and they went shopping and kylie got her self 3 very pretty dresses. She also came home with a very big bald spot on the top of her head where the radiation was done. So, to go with the flow, James shaved the rest of her hair off. His will be next,I'm sure, she hasnt insisted on mine yet but, I would do it. Wouldnt be the first time Ive shaved my head for Kylie.
I sent her to school today. Tommorow we have a drs appointment to check her counts and all that fun stuff. On Wednesday kylie will be spending some time with a couple of good friends at chuckie cheese. Then on Thursday we do another round of chemo and see what happens from there. Its a minute to minute plan we have going. I only say that because, here lately our plan can vary from minute to minute! cant complain,we've been extremely blessed.
Kylie will be entering an art contest through the Cleveland clinic and The Littlest Heroes.. When she had radiation, they had made a mesh mold of her face, well we got to keep it. We brought it home, and Kylie and I paper mache'd it and painted it white. Kylie then proceeded to paint it all up with a rainbow hearts and a butterfly. We then took pictures of it. Kylie pasted the pictures on the art board she was given, and then painted around the pictures with a heart and spring colors. I am very proud of her art project she did a good job on it!~ First prize is a disney cruise and 2nd is 500 dollars and all the art projects get displayed for a special showing...
Kylie will also be having a photo of her and her beads displayed at a craft fair, to benefit diffrent programs for the Cleveland Clinic. The beads Kylie will be helping to display are pretty cool. Each bead represents a diffrent aspect of the treatment world that Kylie belongs to. For example each red Bead is a poke, each grean bead is chemo, orange represnts a round of scans, A star bead means each bone marrow aspiration. They have beads that represent surguries, hair loss,hopsital stays and transfusions,the list goes on, etc.etc... They even offer birthday beads and end of treatment beads. Needless to say Kylie has 3 long necklaces dating all the way back to our first 11 days in the hospital, and for the most part her beads are in order.. I will post a picture of her wearing these very special beads ASAP.
Speaking of the first 11 days in the hospital. Our 3 year anniversary is coming. We were dignosed on November 14th of 2002. I remember that day like it just happened 5 minutes ago. Its funny how the brain works, I really have to think to remember some things and other things are right there in my face and its funny(not really) but the things that are so easily conjured up in my head are tragic events. I had an Aunt Sue, and I loved her alot. I have a hard time remembering her face before, the last time I saw her (she died of cancer). That bothers me, sometimes how easily I can see the face she died with but really have to think hard to remember the face she lived with. Anyway I'm babbling(I tend to do that alot)........
Rememeber to pray for your neighbors,and for our soldiers and thier families. With the holiday season rushing upon us please put out an extra prayer for those families that are preparing for thier first holidays with out thier loved ones, or will be spending thier time in the hospitals or just away from thier family....... God bless
Thursday, November 3, 2005 11:26 PM
Today was a long, long day. I left our home with kylie in tow at 9am to arrive in Cleveland shortly after 10am. Her port was accesed and pre chemo fluids were given over a 1 hour period. She then recieved her IV bag of zofran(anti nausea drug)over a half hour then she recieved a steroid type drug(not 100 percent sure why)over the next hour. Then finally her chemo bag was hung for another 2 hour period. After that she recieved her post chemo fluids to be given for at least 2 and half to 3 hours. needless to say with the hour drive home, we didnt arrive home till about 7pm......
It was a sad day at the clinic, for they were very busy with the kids coming in and it seemed every kid that walked through the door needed something, treatment, fluids,blood and/or platelets.
Kylie did her normal social butterfly thing, while I sat back and hung around. I talked to the nurses and some parents and drank my starbucks coffee. Then I met this beautiful little girl with bright blue eyes and long blond hair,hanging around with a nurses aide. I have never seen this girl before and looking at the IV in her arm and the look of confusion on her face,my heart sank. I knew from the moment her mom walked around the corner with that panic look that I too wore across my face once(3 years ago, and quite a few times since). That look of shock and disbelief. My first thought was God ,this place shouldnt even exist but we are here, please dont add any new faces.. Yet here she was a little girl of 4 whose parents have just been told she has leukemia. How heartbreaking. I dont know what was going through that moms head today as she told her child they would be staying for the next 7 days. Our situations are very diffrent but I can relate to the initial concept. I want to send out a special prayer request for this family and the next seven days, as they repeat thier story to countless drs,learn medical terms and are thrown into a world like no other, as they try to be brave for thier little girl. I hate this,these are just children, precious,innocent children.... I wish cancer never existed!..................................
(It was then that he carried me)
Wednesday, November 2, 2005 6:23 PM
Alot to update on. We went to the clinic on tuesday and it went well. Kylies counts were pretty good for her. We talked to our dr. and, without a plan or many options in place we made a quick plan that we honestly have no clue about. I am desperate at this point to find something(anything), that will work until a a real cure comes along! Here is the plan....
Our dr searched and searched and found 2 chemos that kylie has never tried. One was part of a study (oscarplatin), and the other has never been used in children with nueroblastoma but, has been found to have killed nuroblastoma cells in the lab (gemzobeen)(Im sure its part of a study somewhere but, who has time right now for that, we sure dont).. Parden my spelling of the 2 chemos.... The drs thought process is the combination of the 2 could possibly benefit Kylie for now(nothing long term, that we know of, but worth a try). Without much thought, research or knowledge of these 2 drugs(I usasaly do my homework when we treat). I agreed to start right away. SO, Kylie started with the gemzobeen today and tommorow will do the oscarplatin and then have 6 days off and repeat the gemzobeen and then have 3 weeks off. Hopefully we will scan at that point and see what such a quick descion based on nothing will do for her. I followed my heart and I believe that no matter what the outcome we can say we tried it. It may work for her and it may not, but Im not the one who truly determines what works and what doesnt work....
Anyway, Today was a good day at the clinic Kylie,Jackie,a friend Christine and I had a pretty decent ,somewhat long day. I introduced Christine to my alltime favorite Starbucks drink(sorry Rodney..smile..).... kylie so far(lord willing) has tolerated the dose of chemo today well. She did not complain or get sick. In fact, She was all bounce,(amen) Tommrow we go back for the other one and Friday I plan to send her to school and then its one day at a time from there. This chemo will drop her counts eventually for sure...
Please pray for your neighbors , all the sick children and adults and for each other and always count your blessings and be thankful.......
Monday, October 31, 2005 9:13 PM
All is going well in the Houtchings houshold. tommorow we are off to the clinic for a regualar appointment and a quick chat with our dr. We are taking along Kylies good friend Kristen. Kristen enjoys going to the clinic with Kylie.
Our drs father passed away and because he lives so far away and our dr was already en route home, he was not able to return in time for his fathers funeral, his family told him not to worry and come home later. Please pray for our dr and his family and the distance between them.
Tommorow if all goes well I may send Miss kylie back to school.Which brings me to my main topic for journaling tonight.I know Ive wrote this before but, I cant seem to stress how important it is to be mindful of what you say when little ears are around. Kids are so innocent. I'll be honest I am scared that another child could walk up to Kylie and say something totally off the wall. I guess at this point I'm probaly being over-over protective and shouldnt worry so much but I just cant help it. I would like to send her to school and I know she would love to go back to school so, it all depends on her counts. If they are good I will most likely send her back, because its the best and right thing to do.
I do know her days of gym ,for now, are definatly over. She is starting to limp slightly, again(just another reminder that unfortuantly her cancer has the upper hand right now, and thats ok, because kylie knows how to stack the deck!)We are so blessed by her and the love she radiates.
The rummage sale for Kylie held by a local church was a sucess and I was honored to attend the church and thank them in person. The people there were so loving and great. Also, Kylies School will be selling purple braclets with Kylies name imprinted on them. My words will never be enough to express the gratefulness and appreciation we feel towards them, and all who have shown us kindness and support....
I find it hard to express myself. What I mean by that is I feel like a "thankyou" is just not enough, there is so much more I can say and wanna say but I just dont know how. I know that this thanksgiving and well everyday, we have so much to be thankful for. Even though times are hard for us sometimes, the Lord has truly, truly blessed us all.........
dont forget to pray(not that you would) for your neighbors and one another.
P.S I put up 3 new pictures.... God Bless and thanks for checking in.
Saturday, October 29, 2005 8:04 AM CDT
Good morning, good morning! I have good news! I wrote in my last entry that Kylies scan results were less than desirable, to say the least.
Her bone marrow results finally came in and , yes, so far her bone marrow is clean.. I was floored, I truly expected it to be in her bone marrow,( with all the new "spots", how could it not be? Dont care its not there.) This is a mark in our favor. In treatment options. We still do not have many treatment options BUT, there could very well be something that becomes available soon that Kylie may be elgible for... Who knows(I dont).. Your bone marrow is the place where all your beginning cells are made, like red blood cells, white blood cells and platelets, to name a couple, Although Kylie has no control over where her cancer goes she has managed to keep it out of there...That in my eyes gives us a little more time... Her fighting spirit.
Last night I was sitting on our porch in a funky mood and I was just thinking about everything from Kylie to how my vaccum cleaner really works. On the the porch that my husband built because God made him! About 2 years ago give or take, I wanted a porch.. One morning, I was moaning and groaning about when James was gonna put the porch up. He was being funny when he said to me, "when God sends me the money I will build your porch"............ Needless to say later that day , I went and retrieved the mail to find 2 unexpected checks in the mail.... My porch was built that weekend......
I really dont know why I was in my funky mood,just a build up, I guess..........
I just felt like sharing that story. I am now out of my funky mood.(although Im still not sure how my vaccum cleaner really works!)
Also note our email address has changed..... Here soon I will be setting up yahoo account for Miss Kylie so she will actually be able to answer some of her friends.
Please continue to pray for your neighbors, friends and family......
Wednesday, October 26, 2005 6:42 PM CDT
We dont have any results from the bone marrow aspirations back yet. Today Kylie did her MIBG scan and we just got the results back from that.. How I wish I could write "decreasing levels of disease" or some good news like that,but sadly I cannot. She has several new "spots".When I say "spots",I have not seen the actual pictures(nor do I really want to) so we could be talking small here. I did however talk to our nurse, who was nice enough to call us at home after hours. She has "spots" pretty much everywhere, mostly around bony areas such as her,hipS,femurS, armS, shoulderS and a new "spot" on her skull.
I wish I could say I was prepared for this scan result but I tend to get my hopes up. I mean I really did Know in my heart that this scan was gonna be more bad news but when it actually came out, I was taken aback, my breath temporarily stolen from me. I am angry! I am feeling so helpless(I guess thats why I'm angry). I am her mom I'm supposed to be able to kiss her skinned up knee and make it all better, Why cant I kiss this away??? All I have to hold me steady is my faith(it was then that HE carried me). I will be ok........
We told Kylie about all her new "spots". She really didnt seem that interested with the news. What a strong front she puts on, but, Believe you me, shes in her room thinking about things as I Type. Shes so sweet, she either really isnt all that worried or she doesnt want to worry us. Maybe its both, who knows she can sometimes be a real complicated creature to try and figure out.....
That reminds of the time last year when she had gotten her first flu shot. OH Boy, what a ride, 3 nurses and her screaming like the nurse came at her from across the room with a 10 foot needle.. After it was all over and she was done, (the nurses of course were traumatized). She marched right up to another little girl ,(who was crying in anticipation for her first flu shot) and took her by the hand and said "dont worry its easy and it dont hurt at all" I laugh whenever I think of that.. This year she got her shot while she was under anethesia getting her bone marrow...Smile....
Well anyway, please continue to pray for your neighbors. with love, Amanda jo
Monday, October 24, 2005 4:18 PM CDT
Today went very well... Kylie had a bone marrow asperation and radation, both went off without a hitch and were done in a timely manner. She also had a flu shot given while she was knocked out(made that easier). Her counts came back pretty good,they were dropped a little, but she is not yet considered netrapenic(when we watch for fevers and infections). We do not know the results of the bone marrows but we should know by tommrow.... Tommrow we go back for (hopefully) her last round of radiation to her head and her MIBG injection and her blood draws for Texas..... Wednesday is the big scan, that I must admit has me a bit nervous but Im sure will be fine. Nothing we havent dealt with in the past...
Here in a couple of weeks, will mark Kylies 3rd year fighting cancer. We always make it a point to never have an appointment at the hospital on that day.. November 14th turned out to be an 11 day stay for us, not to mention our world was forever touched. We try not to make any plans really.. As that day nears I find myself reflecting on all the things we have done and been through, both good and bad. This sounds crazy but mostly I reflect and realize just how blessed our lives were back then and even more so now. Here recently we have found that alot of our friends from the hospital,when we were first dignosed, have either finished up treatments and are doing well or have passed away(in a way they too finished treatments). I have cried alot over the last 3 years(both tears of sadness and tears of joy). I have also shared in the lives of some beatiful people.
Please pray for these families and their daily struggles with childhood cancers... dont forget your neighbors and each other thanks......
Sunday, October 23, 2005 9:57 PM CDT
Hello all, Things are going well in the Houtchings household. My mother in law from Indiana stayed to help watch the baby while we travelled back and forth to the clinic. What a blessing it was for here to be here. My father in law made the trip back up here this weekend to spend time and take his wife home(we hogged her long enough..smile)......I must say that to be surrounded by such a loving family(here and in Indiana)is truly a great gift from God......
Now Some things to update on... Tommrow Kylie will be having more radation and a bone marroew aspiration. Tuesday, she will be completing radiation and having an MIBG injection. Wednesday she will be having a major scan done (MIBG), this scan will light any and all cancer in her body up. Thursady she will be having a CT done...... I do not know what these scans are going to tell us,they could give us good news or they could give us devastating news.Im praying for good news of course.... Gods will is Gods will...
The doctors are not God,I am by no means God and I do not hve answers to alot of things(to be honest I dont even try). People tend to ask us, family members and friends these questions and Im gonna clear up rumors and such to the best of my ability, I totally understand everyones concern,I am not mad at anyone nor am I trying to appear rude but some things have been coming up .....
some frequent questions we get asked...... I do not know when kylie will be returning to school with all her appointments and counts dropping and such..(I pray ,soon, since she loves school so much).... Yes! Kylies cancer is agressive and hard to treat. Will she die from it? I do not know nor does anyone else but the the Lord himself. NO ONE is promised there next breath. The truth is EVERYONE will someday die. That does not make it easy for anyone to understand but it is understandble... Will kylie be around for her 10th birthday? I fully expect her to be,but again I do not know and I (nor have the doctors put a time on this childs life, she could very well out live me)....
I know people talk and things get said and sometimes misspoken but, PLEASE be mindful on what you say around our family and friends but most importantly what you say around children. Little ears hear and take in more than we think and I do not want a child to overhear something that may or may not be true and get scared and\or repeat what they heard to Kylie... Another question we get is what does Kylie know? and my answer for that is simple, What Kylie knows is of no concern to anyone but us because it doesnt really matter to anyone but us. If kylie needs to know something it will come from us, her family. Once again that is why it is very important to be mindful and respectful when disscusing certain things...
The one question that I sadly have been asked a couple of times is, do I worry about Jackie getting cancer? and my answer to that is , NO I do not and I find this question to be rude and distasteful. This particular cancer is not herditary and no one really knows what causes it... My children are my life and I love them dearly, so when people ask me about my other daughter it catches my breath and puts a fear into my heart, that I dont need..... I would not wish cancer on anyone young or old.
The last thing and again I do not wish to offend anyone but please dont come up to me and tell me you understand or you know because you had a brother, cousin ,mom or dad with cancer.. cancer affects us all diffrently and I'll be honest I dont understand what its like to lose my mom or dad(whatever the case may be) to cancer and I pray I dont ever have to find out. Cancer affects us each in diffrent ways and if you know someone with cancer, I can feel sad with you but I cant understand ,because I am not in anyones shoes but my own. I dont expect nor want anyone to understand what me and my husband are going through with our child. We just want to take things day by day and lead our normal(for us) lives.
I just basicly ask that people just pray for one another and be respectful of one another and be truly mindful of the smaller children when they speak.. Im not directing this journal entry to anyone in particular, Just some things have been brought to my attention that I feel need to be addressed....
Kylie is in very high spirits and we are all very positive and our faith in the lord provides what we need.. We are all OK... Please just keep praying for us ,your neighbors and all children.........
Thursday, October 20, 2005 10:06 AM CDT
All is well.....Yesterday was an OK day. We went to the clinic and had blood drawn. Kylies counts came back Good, could be a little better but not bad, and Im told, they will drop most likely next week for sure... Our nurse practioner Holly and I had a long talk about things. It Was not a bad or terribly sad conversation just long and exhausting.....
Today we dont have an appointment until later but we need to get there a little earlier to pick up a prescription for miss Kylie. We are trying something, so lets pray it at least helps back things off so we can move forward to another possible treatment, that kylie may qualify for.(more info later,as I find things out)
We all are fighting colds right now,including Kylie and Jackie. I'm sure we'll all be ok... well Im gonna go for my walk,Ive been attempting to walk with My friend Christine at least every other day, for fitness and stress relief and just to talk about whatever pops into our heads.....
Please pray for your neighbors, yor loved ones and your friends....
Tuesday, October 18, 2005 11:14 AM
I have to admit something. I wrote in the journal update about kylies appointment and how mad I was about radiation cancelling her appointment. Well the cancellation was justified.... Kylie was orignally supposed to go in Thursday for simulation and mapping and then start treatment yesterday(Monday) ,but it was such short notice, so to accomadate us, they switched her appointment to Friday and with it being a weekend, it would be hard for radiation to put together an accurate map and plan of attack... Her new start date would be Wednesday. I misunderstood this and still was on the Thursday- Monday plan, instead of the Friday- Wednesday plan. It was I who got all worked up and mad over my own misunderstanding, and it was I who was over tired and called my husband to call them back and chew them out and it was I who got everyone around me worked up into a frenzy and for that I apologize...I'm the one who made a mistake. I have just called the radiation dept and apologized to them for my crankyness and I no longer think they should pay for my gas for the wasted trip. I wasted the trip so I guess I owe my self gas money..... Tommorow is our actual date to start and I will be there, alot less cranky this time. I guess I just needed to myself in my place, I cant expect myself to keep it together all the time...... well anyway ....
Kylie went to school today and all is well, tommorow we have our real treatment and a blood draw for her counts....
Please pray for Kylies doctor, he had to go back to Beruit, to care for his ailing father. May he have a safe trip there and eventualy back home.. dont forget to pray for your neighbors friend s and families, and of course all those families that are stuck in hospitals or strange cities..One more thing, yesterday on the way into Cleveland ,I saw a homeless gentleman ,he has been in the same spot for the last month(I see him everytime I go to cleveland) well yesterday for some reason I felt compelled to hand him money, so I did(I dont normally do that) he took my few dollars said God bless you, I replied and you the same. Now I dont know his name or his story, but please pray for him and sadly many others like him......
Monday, October 17, 2005 10:35 PM
today was an exhausting day for me...... lets back track and talk about the wonderful weekend we all had first....
On Friday Kylie had an appointment for simulation and mapping for radiation treatments to begin on Monday. We then arrived home and awaited for our entire family from Indiana to pile in. They did and it was a blast!! We had 3 air matresses spread out on the living room floor and bodies everywhere including Kylie and jackies room.(10 adults and 7 children) It was great!!!..... On Saturday we all went up to a nearby orchard and enjoyed our way through a corn maze. Then we girls left the men and children at home, while we all made our way to the local Walmart(big fan,James proposed to me in the parking lot) for some dinner staples. Upon returning the men left us hens to cluck, while they all spent some time up at gander Moutain. The men came back home to, 10 lbs of mash potatoes, 5lbs of cabbage, 3 lbs of green beans and about 7 lbs of homemade chicken and dumplings. what a feast, with hardly any leftovers! We did the cha-cha slide and the macareena and watched the kids play twister. on Sunday we all had breakfast, sausage,eggs and pancakes. all weekend long our home was filled with laughter and just joyous moments..........
Now onto today, we were supoosed to start radiation and well i was up all night with Jackie becauseshe was constipated and had a belly ache. I drove the hour trip to start kylies radiation only to wait 20 minutes for them to come get us and tell they dont know what happened but our appt was canceled.Ournew appointment is not scheduled till wednesday, which is 2 days away. That also means , we are probaly gonna have to have radiation over the weekend... This is Kylies life we are talking about and 2 days is a big deal. considering the tumor they want radiate is growing down into her brain... I suppose it will be ok I was just tired and cranky and I'm sure there was a good reason they forgot to call us...... Everything happens for a reason and mybe someone else needed to have radiation more than kylie did at the moment
well at least I can send Kylie to school Tommorow....
please rememer to pray for your neighbors and all that need prayer
P.s Mrs Jump,You wanted a name ...WRPW....Western Reserve prayer warriors... Smile We love you guys thanks for Everything
Thursday, October 13, 2005 4:19 AM
couldnt sleep, so i thought i would update the journal.
We sent kylie to school yesterday and she will go again today. She was so excited after school, she came home wearing her AWANA shirt and was so excited about being a super kid(something they do at school). She was just beaming! Although Kylie is missing school due to appointments with, help from her wonderful teachers, she is keeping up with her work and still managing to get 100 percent on her science test!
On friday we start our appointments all over again with another radiation simulation for a spot on the very top of her head and then start another 5 rounds of radiation come monday. I will be driving her back and forth everyday,(praise god the weather is still nice)......
This weekend , kylie is real excited, our whole family from Indiana will be piling in to stay at our house.(about 14 family members will be occupying our floors.) They did this last year and we had a blast! Kylie and all her cousins, get along and play, while all us adults cook out and play cards.. Its really a fun time. Its a blessing to have the family we have, both here and in Indiana.
Despite everything that is going on and the fact that Kylies cancer is so agressive, she is such a fighter and her spirits couldnt be better. We have been truly blessed by God to have such an awesomne child. I learn more and more from her on a daily basis. Its almost harder on me than her and shes the one having to go through it. I thank God everyday for her determination, wisdom and strenth. God has been so good to us. I'm not thanking God for kylies cancer , I am thanking him for the lessons im learning because of her cancer. Its funny how that works...... well anyway, please remember to pray for your neighbors, and take the time to stop and reflect on all the wonderful things in your life. It seems for every one bad thing, there are 5 good things to praise the lord on.......
Tuesday, October 11, 2005 11:00 AM
Today is a good day, we started out running late but, really in the scheme of things, no big deal...
We got here (to the clinic) and things are booming! the Cleveland Browns are coming today(and me without our Steelers jersy, SMILE!) Kylie has had her blood drawn and extra blood drawn, ready to send to Texas... Now we are just hanging about waiting for radiation. Today is her last head treatment, and we get to bring home the mold she had made of her face. we decided to paper mache it and paint it and make it some kind of modern art.....(will have pictures soon)
No worries kylie is Ok today
If kylies counts are good today then she will be attending AWANAs tonight and school tommrow. She is so excited! Thats the jist of things today.
Please pray for your neighbors and anyone who might just be in need of an extra prayer.
Friday, October 7, 2005 10:27 PM
Its been a long, long week with not much of an end in sight. The dr decided last minute to do radiation on Kylies head after all because her tumor "fred" grew a buddy "ted". Needless to say Kylie will be having radiation over the weekend with Tuesday still being the last day. Her limp is almost completely gone. Thats a good thing. I'm not sure what we are going to be doing next, if there even is a next thing to do. She is still taking her oral chemo at home, that too ends Tuesday and then its the waiting game. I'm praying for our miracle and in the end one way or another I truly believe she will get that miracle, on earth or in heaven she will have that miracle........
Kylie is still in good spirits and we are for the most part keeping a positive spin on things...Kylie is also very smart and her knowledge is amazing, so I'm asking that when people see her or are talking to me or other family members with her around, please be mindful of what you might say or ask. Please take the cues from Kylie or us, as to when certain subjects just need to be dropped. We would appreciate that greatly.
Although what is happening to us currently is important and delicate, please remember that we are still individuals and we dont want this situation to be the only thing to talk about. Dont be afraid to call and discuss the weather or whatever you want. I know this is gonna sound weird but, if there is something going on in your life and you wanna talk about it, please call us and let us know because if we CAN help we will...
Everyone has been so good to us. We have been truly blessed. I was told the teachers are praying at Kylies desk in school.. How beautiful is that!! Our family has been super supportive and helpful. I Thank GOD everyday for all that we have and have been given.......
I am sad, angry and have all kinds of emotions coming and going but, I want everyone to know, I am Ok. I have not given up hope nor lost any faith......... Im just being realistic and although being realistic will not make things easier, it does help me somewhat.
Please continue to pray for us, your neighbors and just anybody who needs an extra prayer......
Wednesday, October 5, 2005 10:18 PM
..."It was those times that I carried you." this is last verse of the footprints story, one of my favorite poems about Jesus. When I feel down He carries me.......
What a difference a day can make... Today kylie went to the clinic and had a CT of her head and chest and started chemo IV(just today for the IV chemo and the rest of the week its pills at home) and radiation to the knee... Although news did not change on her tumor status(they are still there), Kylies spirits were high and her limp has eased up some after one round of radiation. Tommrow we return for another shot of radiation( which we will continue until tuesday) and then we start oral chemo at home.
Today I actually touched a small but hard knot above her eye, on her eyebrow. This disturbed me to say the least, to know there is a tumor there is one thing but, to actually physicly touch and see it, is another story all together.... To combat my dread and nervousness, Kylie and I named it. I know that sounds weird but we we felt it nessasary. We now refer to her eye tumor as "fred, about to be dead tumor" and hopefully in no time we will never see(or feel) "fred" again! At this point in time its a whatever it takes to get us through type deal.
Thanks to everyone for helping us out and most importantly praying for us... God bless and take care, Love Amanda Jo
Tuesday, October 4, 2005 9:05 PM
I am sad to say that our fears have been confirmed... Kylies limp(which has gotten worse) is cancer related and since my last update there has been pain in her side and, her eye has begun to droop(just like the day she was dignosed). Today we went to the dr and have come up with yet another game plan,a comfort plan at best... Do not read me wrong, we have NOT given up hope nor the fight but we are however a bit tired.(at least I am anyway, then again its not about me)
Our game plan is this.... Startingt tommrow we will be doing radiation on her knee area and yet another chemo combo for the rest of the spots, this being chemo we have not tried....
She will most likely lose her hair and she is not happy, so after telling her this we opened the doors of communication, in preparation for the "big talk". The talk I have been dreading for the last 2 years. As long as Kylie has fight in her we will do whatever it takes God willing.
Thursday, September 29, 2005 10:30 PM
Things are going well here in the Houtchings household, as well as can be expected. Jackie is doing well and growing like a weed and keeping us all quite busy. She is a very good baby and she just loves her big "sissy". Kylie loves her little "sissy" too.
Kylies next drs appt. will be on Tuesday. Just a normal routine check up. My concerns grow,(as does my fear, must remain calm and strong),as Kylies limp seems to be getting worse. I watch her getting on and off the bus and she is a bit slow about it and today she came home to inform me that she has a hard time getting up off the floor at school. I asked her if she is having pain, and praise the lord the answer was a confident no. I know in my heart that this is not a pulled muscle or over exsertion, I just keep trying to convince myself..... The truth is I am scared out of my mind and feel like I'm gonna lose it(must remain calm and strong) My only prayer right now is that I'm wrong and it really is a pulled muscle.....
Enough of that... Kylie went to her first AWANAS meeting this past tuesday and loved it, she had a great time(praise God). AWANAS is basicly a vaction bible school with more perks. She is very much looking forward to the next one. School is going well for her, yesterday she brought home her science book to study for an upcoming test. Problem was, this was the first time ever that Kylie had to actually study and she didnt really know how to study.. Hope she does well on her test!
Please pray for your neighbors and people stuck in hospitals or Ronald Mcdonald Houses and well just pray.....
Saturday, September 24, 2005 1:36 PM
All is well in the Houtchings household. Kylie just had a drs appointment in Cleveland this past Thurs and all is good there.Her next appt is Tuesday and also it will be her first AWANAS meeting. Her counts were fine and pretty much back to normal(well,normal for her). We did however discover, she had a big swollen welt on her arm that was hot to touch, her dr found it to be a reaction to some kind of insect bite.(maybe a skeeter from Texas, Suprised it didnt carry her off into the night, them things were HUGE..smile) We fixed it right up with benedryl.
Now ,we will not know anything about the treatment results until end of October when we redo all her scans and reevaluate her disease. I am a little anxious about all this because mean while we are not doing anything(treatment wise)and Kylie does have a slight limp in her hip area that comes and goes, She is not complaining of pain, so thats good. If she does however start to complain ,we may do her scans early and start her on "comfort chemo" until we can figure out another plan of attack. Our options are limited right now but, I am doing my homework and looking into somethings with the good lords help of course!
I'm trying very hard to keep up on our thankyous but i am falling behind. As fast as Im sending letters, emails, cards and making phone calls, someone else is sending help. Praise God! We are truly blessed. To "Pay it forward" we, along with some really awesome friends are trying to work out a date and time to go and serve Pancakes at the ronald Mcdonald house in Cleveland.. Those families need breakfast too(smile). Having used so many diffrent ronald houses in the past couple of years, its the least we can do(wish we could do more and maybe we will)..... I will be calling the RMH on Monday to try and figure a time.
Please pray for your neighbors and well just pray! God Bless
Tuesday, September 20, 2005 9:18 PM
WE ARE HOME!
All is well, we got in last night at about 11:30pm. We then spent the night at Mamaw and Papaws' house. Kylie and I got up first thing this morning, and went and saw my daddy her papa, he was so happy to see us he was just grinning from ear to ear. he is doing so well, we are so proud of him! He just keeps getting stronger day by day!
We actually made it back to our house around 3pm(sorry we didnt call anyone)and began to settle back in to our ohio lives. I must call and makje Kylie an appointment in Cleveland, I need to write some thankyous and actually get out and thank some people in person, get some housework done,(that didnt get done before we left), must check the mail and etc,etc..... I have my normal chores to do and I feel so blessed!!!!
Sunday, September 18, 2005 6:09 PM
Well tommrow we will be on our way back to Ohio after our final drs appointment. Although I miss Jackie and am looking forward to going home, I will miss it here in Texas. Our experience here has been a true blessing. I wouldnt mind living here, although not directly in the city. We have seen some nice country sides. Well ya never know.......
All is well, we cleaned our room up and are ready for checkout first thing in the morning. After our appointment, the rest of our day will be spent in the airports.
I cant wait to hold our baby(Jackie) and then go see my daddy! Dont get me wrong,I love all my family but those two ,I'm missing the most!
please pray for your neighbors and remember to count your blessings.
Friday, September 16, 2005 7:47 PM
Today, we spent the day at NASA Space center. We had a nice time. We got lots of pictures,but, my silly butt forgot the digital camera at home and now have 4 disposible cameras full and waiting for developement.
We are enjoying our time here in Texas, despite the misadventure we had upon first arriving. Kylie is feeling great, nothing has changed since this morning. We are just kinda hanging out and relaxing.
We are missing Jackie pretty bad but we keep calling and checking in on her, and like I mentioned before she is in great hands.
I've also been checking in my daddy, and he is doing well. I am missing him quite a bit also but, he too is in pretty good hands.
We will be home late Monday night(plane lands at 10:30 PM), Im sure the cats cant wait for our return.
Remember to pray for your neighbors and loved ones. I am very thankful for places like the Ronald and the Childrens Hospitals and I am most thankful for Kylie,Jackie and my husband James. I thank God everyday for what I have.
Friday, September 16, 2005 8:42 AM
Back in Ohio it is 9:42AM, we are about to head out of the Ronald Mcdonald house and down to NASA. We are between appointments so, we figured what the hey, lets have some fun...
All is going well here, we havent had to bad of a time getting around and finding things to do or enjoy(other than the hospital). The weather here is just beautiful, we really are enjoying that!! Texas is defintly a place we might revisit someday. The hospital is great and they are very good to us. Houston itself is big and overwhelming at first, but the hospital has helped us ease right in.
Kylie is doing well with this treatment she has not experienced any side effects and all so far looks good. We have to do a full disease accessment in 6 weeks(in cleveland) We pray that comes back in our favor.
please pray for all the families, that are in Ronald houses,or hospitals. A special prayer for some special friends of ours back in ohio, who have to travel.
Wednesday, September 14, 2005 10:05 AM
Hello, sorry for the late update but, things got crazy for us! We are NOW safe and sound here at the Texas Ronald Mcdonald house.
Make a long story short... We arrived on Sunday to a very full Ronald house and no hotel rooms available due to evacuees and being so close to the Astro dome. We eventually found a room, but they had to kick us out the next day due to being so booked. The hospital, being wonderful, felt so bad they not only reimbursed us for the one room, they worked for hours and found us another room about 45 minutes away with a 50 dollar cab ride there and back. The hospital took care of it all until a room at the Ronald opened up. 45 minutes away isnt that bad, we drive an hour for kylies appts in Cleveland(smile). We were one mile from Nasa. All worked out after all, We have God on our side!
Anyway, Kylie received her treatment yesterday and did just fine, and now we just hang out until our next appt.
We have been keeping in touch with our family and little Jackie is doing well and in good hands. We miss her very much, but we'll be home before we know it. All else aside we really like it out here...,
please pray for all the families that need prayer and always count your blessings and thank God!
Saturday, September 10, 2005 10:19 PM
Tommrow is the big day. we should be on our way to Texas. I'll let everyone know when we get there. Im gonna miss little Jackie, but I know shes in the best of hands, our family......we'll be back sept 19th and do some scans shortly there after in Cleveland to see how this treatment worked.......
Today was a special day for us. Due to being pregnant we had not been able to go to cedar point, well today we went. Today was Kylies day because, she has hit the " I'm tall enough to ride any ride I want" mark. Kylie is now a big fan of the rapture(a roller coaster ride that lets your feet dangle as you twist and turn and go upside down) She rode that twice. She loved it!! Kylie just kept saying how awesome it was.... Shes working herself up to other rides.
My dad is doing really well also. He walked the entire lenth of parallell bars just the other day. I am so proud of him!
Remember to pray for anyone who needs it........
Monday, September 5, 2005 10:56 AM
Kylie is doing well, she is not experiencing pain(despite the cancer ravaging through her body). In fact, she went to a wedding reception on saturday, and danced the night away. She does however have a slight cold with sore throat, which literaly came on over night. We called the doc and her symptoms were not sounding strep related,(we were worried). So, we have her gargaling with warm salt water and are watching for fevers.
I was getting quite nervous about traveling all the way to Texas alone with Kylie and all those refugees from the hurricane going to the same area as us. The boss at Bettcher Ind., Larry Bettcher himself approved paid vacation time for James to go with us.That man is getting a big hug from me, let me tell ya!!. Everyone at Bettcher has been so wonderful and kind in getting us the help we need, we are sooo thankful and appreciative. We are truly thankful for all the help and support we have received here recently and since this whole thing started back in November of 2002, when our 6 year old was dignosed with cancer known as neuroblastoma. Family,friends and even strangers, have showered us with love and prayers, and no words I type here will ever convey how blessed and touched we truly feel...
So, needless to say I was able to get James a ticket on the same flight, sitting right behind me and Kylie. We will leaving on Sept 11th and coming home on Sept 19. Please pray for our safe trip and also a special prayer for the child(Kylie)that will be with us and the child(jackie)that we will be leaving at home. Also the many families that need prayer here or anywhere.
Sunday, August 28, 2005 11:00 PM
I finally have pictures so check it out!
We have a treatment date. Its not as soon as we had hoped for, but its a date none the less. On September 11th, Kylie and I shall be flying out to Houston,Texas for an appointment on the 12th. We spoke with her doctor here and he informed us since its gonna be a little bit before we go that if kylie become symptomatic(meaning having pains or troubles) we can do a round of chemo before we go. Our goal is to keep Kylie as happy, and normal and mostly pain free as possible. We do plan on sending her to school(something she is really looking forward to). We are also planning a trip to Cedar Point the day before we will be scheduled to leave thanks to my mom(her work is having a company picnic). Due to my pregnancy we havent been all summer.
James and I have also decided that its time to buckle down and look for options out there yet to be explored, by us anyway. We refuse to believe that Texas(a very experimental treatment) and chemo that wont really work are the only options we have left. May the the good Lord guide us on the journey ahead of us, wherever it may lead us, even if its no where.
On a good note, Im not super concerned about Kylie feeling pain , because right now she is not complaining and even doing cartwheels. Shes making plans for school and her future, and we are right beside her sharing in her hopes and dreams.
Now something important.... We would like to say thanks to James' work, Bettcher Ind., for pulling together and raising money for us to get to and live on while in Texas. Some very close friends of ours for offering things, helping out and just plain being there. ( I wont mention names for privacy reasons) We would also like to thank our family members for well being our family. They to have pulled together to throw benefits(like cut-a-thon, famous hair in Amherst on september 11 from 4 to 6,with a bake sale) and lemonade stand(kylies cousins raised 50 dollars), or have popped in to visit us and just out and out hand us money with hugs and support. My one sister in law has worked very hard to get us plane tickets through a sky miles program,(I'll post that link ASAP) So I just want to say thanks to all, and I have alot to say about this, besides just a thanks but I'll just start crying and the keyboard might short out, so for now just, Thanks.!!
Please continue to pray for Kylie and any other families out there in need of prayer. GOD bless
Thursday, August 25, 2005 1:45 PM
Hello all, sooo sorry fro the late update and lack of new pictures(picture thingy, I cant get to work). Well anyway heres a good and bad and ok update.
On August 18th at 4:58 AM, we, Introduced our newest member Jackie JoAnn to our chaotic world. Shes every bit as beautiful as her excellent big sister, Kylie. She weighed in at 7lbs 4 oz, and big sis kylie actually watched her come into the world, Both Kylie and James were wonderful and very supportive during the whole process. I love my family. I PROMISE to have pictures very soon!!
My daddy is making excellent headway, hes improving everyday. Hes now standing and holding himself up and getting himself around, on his own, in his wheelchair....
The not so good news, as most know kylie relapsed at the end of July and did yet another round of chemo in Cleveland. Yesterday, we repeated her scans and the news is glum. Kylies cancer has increased and our options have decreased. Kylie now has spots on her frontal lobe(forehead),arms, hips and knee joints, these being new to the spots she already had on her femures(both thigh bones) and ribs. Chemo in itself is not a big option because after awhile this nasty neuroblastoma developes immunity to it. We are currently making plans to go to Texas, to recieve her own lymphosites with antibodies attached. She will be the third child to ever have to have this done and studied. We are not sure whats gonna happen but we do know we are gonna do this and just pray. Another option we have is going back to Philly, for another dose MIBG therapy. The draw back is the dose will be lower and honestly a lower dose wont really help all that much, but it could slow things down(maybe)........ The truth is , there is no cure for neuroblastoma and Kylie was classified as terminal from the beginning.Theres always hope and we as a family will keep our faith strong. Please pray for Kylie and all the other families out there, that may need prayer.
Tuesday, August 9, 2005 5:31 PM
All is going well here. Kylie is definatly perking up. She has regained her apetite and is drinking plenty of fluids on her own now. Her diareah is pretty much gone now. She has an appointment this Friday. She will be repeating her MIBG Scans soon, on the 23rd and 24th of this month. These scans will tell us if the chemo is working. If it is not we will be be packing up and heading to Texas. If it is helping in any kind of significant way ,then we will be staying home and doing another round of chemo to lessen her cancer load before we go, but we do plan on eventually heading to Texas. Thats the plan so far, nothing ,of course is set in stone.
I have an appointment tommrorow, with my OBGYN. Just a plain old check up.
My dad is doing really well, and I feel like Kylie got her bounce back from someone and it seems she got it from her Papa.
Thursday, August 4, 2005 3:37 PM
Sorry for the late update, its been pretty hectic around here.
Kylie is doing well, she finished a round of chemo and then spent 5 days in hospital due to to pretty bad dehrdration and diareah, but her bounce back is kicking in and all seems to be looking up for the little one.In fact, her counts are actually coming up on their own rather than dropping as was expected with this chemo. She did lose quite a bit of weight but even her appetite is returning, the heat has played a very small role in this ,but all is still well. We thank God for our central air!
We will be rescanning before her next round of chemo to see if it is even benefitting her. If not, then we will have to devise another plan to get our little girl cured once and for all. As many of you know her cancer is agressive, and hard to treat. We have no intentions of backing down any time soon, so please pray for Kylies strenth. Also, off subject, please remember to pray for all our marines and other soilders and thier families.
My dad is showing signs of improvement so all is going ok with him.
I have a little over 2 weeks to go before we welcome little Jackie into our chaotic world.But for Right now its easier just to carry her around with me so, as far as Im concerned she is a ok where she is. Although we are very excited for her arrival,its all in the lords time.
we are all doing ok, despite our added stress and the heat. The lord brought us to it and the good lord will bring us all through it. We are blessed to have each other.
Friday, July 22, 2005 1:41 PM
All is going well. today we are done with kylies chemo and our on 3 week "in between". We are gonna watch her counts and once again do the mask thing. Nothing we havent done before, we sure are getting to be pros at this. She has gotten a little sick this time but not to horrible. Her feet pain is slowly but surly going away. Her "bounce back" is starting to shine through
5 more weeks(give or take) and Kylie will get to finally meet her little sister. I have dialated to 1 and I am getting anxious myself, not mention really starting to waddle(smile).
My daddy is holding his own! I know hes not happy but hey as he would say himself, "Sh*t happens"!(his words quote un quote, when Kylie was first dignosed with cancer) The lord has sure blessed this family with strenth. Between kylie, me having a baby, and my daddy. I am amazed I'm not a puddle on the floor, but who would that really help?. I need to do whatever it takes to help my family through the rough so we can get on with the good. I thank my lord every day for my husband James who stands beside, in front of and behind me no matter what. I only hope that I am good to him as he is to me. Thank you for all the prayers and support, we sincerely appreciate all that is being done for us.
It all breaks down like this we are all gonna be fine, because we are family and we have to.
Tuesday, July 19, 2005 4:00 PM
Sorry for the late update, things have been real hectic around here. Here it is.
Kylie has relapsed again and its not good. Its not horrible either but its definatly going to be an uphill battle! She still has neuropthy and it is definatly an issue with her.(neuropothy is numbness in her feet a temporay side effect from the ABT). Houston said we could take her there and have the blood they have been cooking for a few months now, back and it may or may not help, but they would need us there this week or next and we would have to stay a full week. We told them with the baby on the way I just cant travel right now, put it on ice, they said they can freeze it for when we are ready.
We arrived home last wednesday from NIH after finding out about her relapse. We finished her scans here in Cleveland and for right now have started a diffrent type of chemo. On Friday I went to visit My dad only to find him on the floor. He had a massive stroke and its all touch and go right now . He is also at the clinic so Im spending my week running betweeen the 2 rooms ,Kylie in clinic and dad in neuro ICU, a mile apart. Even though this is all scary, we have all the faith that our good lord will bring us through.. please pray for kylie and my daddy bill branch.
Sunday, July 10, 2005 5:04 PM
We made it! we are in Bethesda, Maryland at NIH, our flight went very well and was on time. We will be here until Friday the 15 th.
After we arrived, we got settled at the Childrens Inn and went over to the hospital where we learned from her physical, that Kylie is actually experiencing neuropothy in her feet,(this is a side effect from here ABT that causes numbness in fingers and feet). Recently, Kylie has been experiencing pain/tingling in her feet and has been walking funny, Her pain was so intense last night, that she actually had night terrors from it. Today they still bother her but not as much. They (NIH) will be monitoring this and possibly lowering her dose. This is a temporary side effect, that with managment can be controlled and will go away without leaving behind any nerve damage.
Our plans this week; Mon., a bone marrow aspiration, a 24 hour urine collection. Tues., a CT scan, MIBG injection and clinic appt. Weds., a MIBG scan part 1. Thurs., MIBG scan part 2 and clinic appt. Fri, we come home.... Thats our plan, we just pray it all goes well and we can return on Friday with her medication( the 3rd round) and pain management and/or control.
Kylie is in good spirits, after being sick her appetite is returning and she is doing her bounce back thing, thats shes soooooo good at! We thank the lord for that one.(big smile)
Friday, July 8, 2005 11:52 AM
All is going much better these days. After 7 days of Miss Kylie being sick with nausea, sour belly, vomiting, minor dehydration and loss of about 8 and half pounds. It was all due to a stomach virus going around. I too was sick and so were a few other people. Just happens to be a quirky thing that this sickness hit around the end of her 2nd dose of ABT, truly it was not related (what a relief).
Our plans now.... Kylie is back to her 9 year old bubbly self eating again and feeling so much better(only took 7 days). We will be heading out by plane to NIH on Sunday the 10th and after her complete workup(scans and tests),will return on Friday the 15th, hopefully with her 3rd round of pills in tow!
Our long distance addition to our family was born Wednesday night in Indiana, our pet goat, he is all brown and I cant wait till the day we can bring him home, We named him Willie.( All Smiles!!)
James and I started our lamaz classes last night and that was fun. Our second class, James will be attending by himself because I will be in maryland with Miss Kylie. That should be interesting for him, I just love him to pieces for that.
Tuesday, July 5, 2005 2:24 PM
All is as ok as its gonna get. We got back from Indiana on Sunday. We had a great time, despite Kylie getting sick and vomiting all weekend long,she still had some get up and go in her(Praise GOD). I also got sick coming home so must have been a bug.
We are very excited that we will be adding a new pet to our family soon, a long distance pet that is. My Ma in Indiana said after Pearl (thats their goat) has her kids we can have one and they'll keep it till we can find land to raise it on ourselves. We are so excited , I was hoping to see her (Pearl, the goat, that is) into labor while we were there but no such luck, but believe me I'll be calling everyday!! We had such a nice time down home. I really get a sence of myself when Im down there, its simple, peaceful, and so not stressful. I hate coming home, when we dont get to go down as often as we like, to begin with. well anyways, I just thank the good Lord for our family both here and there.
We will be heading back to NIH on the 10th of July and returning on the 14th or 15th. We will be repeating her tests and hopefully starting her 3rd cycle of ABT.
Thursday, June 30, 2005 11:36 AM
All is going well for us. Kylie just completed her 2nd cycle of ABT and so far she is doing wonderful. We are heading off to Cleveland for a blood and chemistry count, here in a minute.
We will be heading back to NIH on July 10th and will be coming home, on or around the 14th. This trip they will be repeating her scans and bone marrow aspirations. I am being told that even though she just had these scans and tests done, end of June, she needs to repeat the every other cycle. This is only being done because it is a study and we must follow study protocols, but I was relieved to hear that this will all start to taper off after her 5th dose and then it only becomes mandatory after every 2 to 3 cycles. something like that anyway, I just go with the flow. As long as this drug helps in some way then we'll do whatever we gotta do.....
We are all getting a little anxious over with expected arrival. We have started the nursury. Already Kylie is being a big help, with folding and putting away the baby clothes and actually doing her own chores, (which are not much, she has to empty the dishwasher and every wednesday go around and empty the little wastebaskets). She is gonna be a great big sister and Im actualy excited for her. A friend of mine suggested finding a program for siblings, I guess there are classes that help kids prepare for the arrival of new family members. Im gonna call our hospital and see what they have and sign Miss Kylie up, I think she'll enjoy it....
Well, we are heading south for the weekend to Indiana. Hope everyone has a great weekend. Thanks for checking in on us, and I will be putting up new pictures as soon as I can get our picture program to do right. look for those soon.
Friday, June 24, 2005 1:00 AM
We are home safe and sound from NIH. All went well for us, our flight home was delayed by about 40 minutes, but we did ok. Airports are the most boringest places on earth when your flight is delayed(Smile)! We got home around 8;30PM yesterday.
We have our schedule for our next trip, where they will be repeating all her scans. We will be heading out(again) on July 10th and returning on or around July 14th.
kylie just started her 2nd cycle of ABT today. Only time will tell how well she tolerates it, but we have a good feeling. Her apetite is good, her, pretty much everything, seems back on track so, Im confident that her last ABT cycle "sickness" was mostly unrelated. We will be seeing her dr in Cleveland on Tuesday.
Wednesday, June 22, 2005 1:31 PM
Just in case anybody was wondering, we are in Maryland at NIH. We made it here with no problems. Our flight went well and everything so far is going ok, we are even in the same room as last time, here at the Childrens Inn. we will be home tommorow evening around 8 Pm or so.
Tommorow the plan is to get up early, head over to the clinic, let them get kylies blood, do a physical on her, refill her pills, get a schedule for our next visit, and be done.( Julys visit will be a little longer due to rescanning and all.) We then come back to the Inn, pack our one bag, straighten up our room and catch the shuttle back to the airport and come home.
we came at a good time to, because tonight the Inn is taking the families out for dinner. So, I signed us up and dinner for tonight is taken care of.
The one thing that saddens me just a little, as we walked through the door we met our friends from our last visit (beginning of June )and they have not been home yet. Hopefully, she says they will get to go back to Arkansa, July 13th. Please pray that this family has a safe journey home. I have a strange feeling that as time moves on alot of these faces will become familier, as we all share a common bond.. The hope we have for our children and thier health.
Dont get me wrong I dearly love alot of the people we have met over the last 2 years on our journey through the hospitals, clinics and protocols. We pray for them everyday. It amazes me, how even though our circumstances suck(no other way to say that), we manage to truly become friends with each other and share joys and heartbreaks all the same. The good lord has truly blessed us, he has blessed us with each other..............
Wednesday, June 15, 2005 11:18 PM
all is well today. kylie is feeling much better. Yesterday, she had her first tooth extraction and she handled it like a champ. Since having that tooth pulled and the infected absess behind it drained, she has been feeling alot better. She hasnt had any headaches and her spells of nausea have lessoned and she has begun to regain her appetite. All her blood cultures drawn a few days ago came back negative. We are assuming that part of her problem may well have been that infected tooth or just enough time has passed that whatever was going on is gone now. who knows, we are just glad shes bouncing back now.
I had a drs appt today and all is going well. The babys heartbeat is normal and strong and she is developing well. The dr gave us the ok to fly,so Kylie and I will be flying back to NIH for her meds on June 22 and returning in the evening of June 23.
Kylie will be returning to the clinic in Cleveland on Friday. So far all her counts have come back in the normal range. Tommorow Kylie and I will be headed out and about to do some shopping for the dads in our lives and some good old mother, daughter quality time....
My special prayer request is for the fathers out there that have abandoned and\or taken thier children for granted for whatever reasons,I pray they find thier way.
As fathers day approaches, I feel this is a special celebration for our family. James,my husband and Kylies DAD deserves to be honored for all he has done for us. Make no bones about it, Kylie and I appreciate James everyday.
Sunday, June 12, 2005 8:43 PM
We all had a very good weekend. We did Kylies, Alexs lemonade Stand and I thought it went well. We had to close down early due to a sudden down pour of rain that soaked everything,but because of a wonderful friends husband we were under a tent, still it was wet... Now the grand total raised at this years event was............. 441.25!!!! thats 441.25 dollars closer to finding a cure for pediatric cancer through research!!!!!!
We would like to take a moment and thank everyone that helped at this years stand. James , Kylie and I appreciated it greatly. We would like to thank curves for use of the parking lot and Dominos pizza for feeding us and all the other buisnesses that let us place up flyers and mostly thank the people who took the time and came to the stand and donated....
As for Kylie, I cant really for sure say what is going on with her, she is sick but shes not, it goes in spurts, we believe due to any number of things like her activity, possible exhaustion, dehydration and just plain being over heated. It could also be her body getting adjusted to her new meds.Which although her pills are classified under an oral chemo, they are not really considered heavy duty chemo, because of the side effects.
She was in the clinic on Friday and she did receive fluids and an all around antibiotic for prusumptious treatment. She has not been eating that well but, she has been eating, that could very well be heat related also or the fact that she is a 9 year old with alot of excitement in her life.... She is being well looked out for and I dont want anyone to worry. We dont believe she is contagious or "super sick" in fact, if anything we believe she caught a bug and with her immune system being less than normal, its taking her a little longer to bounce back.... She will bounce back though.. We will be back in the clinic on Tuesday.
Please take the time to pray for those families that are stuck in hospitals for whatever reasons.
Thursday, June 9, 2005 10:53 AM
We arrived home on the 7th, all went very well, it was a nice ride home.
Things have been a bit hectic since arriving home, with a just a few days left to prepare for the Alexs lemonade Stand with raffle hosted by Kylie,in the Curves parking lot,off of Liberty Ave in Vermillion this Saturday, from 11 AM til 3PM. To help fund pediatric cancer research and fight childhood cancer.. "one cup at a time" (hint,hint)..
Kylie has been sick the past couple of days, nothing real major, we think the heat has gotten to her a little and the 7 hour car ride home on Tuesday didnt help to much. She is ok. We also think she is adjusting to her new pills as well. we were told that nausea has not been a big issue with most of the kids on this drug , so not to worry...
Now I know this page is about Kylie but I wanted to put in a special note about My husband James.... Tuesday, June 7th was our 2nd year anniversary. This past 2 years has been an awesome experience for me, I dont know how mine and kylies lives would be today if we didnt have James. I have said in the past the Kylie is my hero and she is, for the fight that she has. James is my hero because he can put up with me....(smile)... I cant even put into words how special he is to me so I wont,(dont wanna get to girly mushy).....I'll just say, hes my best friend!
Sunday, June 5, 2005 10:18 AM
Today is gonna be a lazy day for us. Kylie has completed her third day on her new drug and so far ,so good , but its only been 3 days and only time will tell for sure.
Yesterday we got up early and trekked our way over to NIH around 9:30am and got a blood draw and Kylie took her pills (the wanted a blood draw before she took her pills for the study). The rest of the day was ours to enjoy ,so we did.
We made our way to the subway and hopped on, to downtown Bethesda and went to our fav place......Starbucks!.. From there we got back on the metro, and made our way to the national zoo to see the pandas among other animals. We walked and walked and walked. we had a very nice day (a long walking day but, nice) we made it back to the house about 8pm. We were gonna head to the smithsonian but, it was to crowded. Yesterday they were having the Susan B. Koman Race For A cure (which is cool but hectic, so we avoided the scene).
This whole week has been crazy, so today we are gonna relax get our room cleaned up and put together, for a hopeful departure on Tuesday and make some phone calls.
Thursday, June 2, 2005 8:04 PM
Today was a long day but not so bad. We arrived at the hosp. for our scary MIBG scan (this is the scan that will light up neuroblastoma cells like an xmas tree). The procedure here is a little diffrent from Cleveland ,no big deal. They wanted to do the scan in 2 parts and then again tommrow. After the first part was completed, the radiologist tells James we need to go to the clinic, like now!!! Of course James become nauseus and I start to tear up..
We get to the clinic and no one was even aware that we were told to come down. The nurse says oh we need to recheck her port. I was aggitated I admit,but I told them they sent us back to our "home" with it working yesterday so, they decided it was fine then.....Thank GOD!!!
Anyways, we were anxious for nothing. Kylie was a little, well she was constipated and they couldnt see her bowels properly and wanted us to give her some help in that dept. The docters needed something that worked quick, they went with this liquid junk that Kylie says was "SOUR and NASTY!!". They sent us home and we went back around 4pm for the rest of her scan. By the way the "drink" did its thing whith in 15 minutes.....
Now for the news everyone really wants to know......... We will be starting the medicine tommrow morning and for the first day doing blood draws every hour for 8 to 10 hours. Then come in on Saturday for a couple of hours. Then we are free to do the medicine and do some vacation like things till tuesday (our next appt). Hopefully if all goes well sometime on Tuesday or Wednesday we will be headed back to the heart of it all... I cant wait to see George and Little Bear, and of course our family and friends... Wink, Wink.....
Dont forget Alexs Lemonade stand (hosted personally, by Kylie Houtchings) on June 11th at the curves parking lot in Vermillion, from 11 to 4pm..
Oh yeah as far as we know, Kylies scans came back clean and her bone marrow samples also proved negative!!!!! PRAISE THE LORD!!!!!!!!!!!!!!!!!!!!!!!!!
Wednesday, June 1, 2005 4:36 PM
Today was a long day for us. it started with us awake at 5:45 am,for a 7am bone marrow aspiration. we get there and all is, so far going well, until, Kylies port,(which was acessesed yesterday and left in overnight so we could save her an extra poke) decided not to flush or return blood. After much debate(and my dismay, We told them itr needed turned) they decided Kylie needed an IV. kylie of course was not happy about this , but she had no choice,so they gassed her first and took out her port and put in an IV, while she was under just a little, then used the IV to put her out the rest of the way and proceeded to take her bone marrow..
You all may know our Kylie as a sweet, common ,cute little girl but, after waking from anesthesa, James, I and a few unlucky family members know her as ROSEMARYS BABY!!! Today her atitude was no diffrent and she hated us all for about 5 minutes, the nurses here are cool, they knocked her happy butt right back out! She woke up way better the 2nd time around. We believe out of fear the nurses would knock her out again.
Its now 9 am and we dont get to just go home ,with Kylie under control. Here they like to move them 20 miles away(I know Im being dramatic, but it was a long walk) into a day hospital for observation, where they also fed her, so that was cool. Our nurse in the day hospital is concerned about her port not working and wants to reacess her port and make sure there were'nt any clots blocking it. They reapplied EMLA(numbing cream) and we proceeded to wait. IT takes about an hour for EMLA to numb the area good. our 30 minute observation just turned into an hour an half. so Her port was redone and it still didnt work,(I sugessted that maybe she didnt hit kylies port right,it does wiggle) the doctor was called and and TNP was used. TNP is some kinda draino type stuff for people ports. You put it in and wait and hour for it to disolve any clots and try to get blood again. the hour came and went it still didnt work. we waited another hour "just in case"and it still didnt work. Again doc was called this time we get to go have a chest x ray done to make sure its placed ok..... Did I mention that when they first did her port James and I both said we dont think she (the nurse ) hit her port dead on,But I digress..... We waited around forver and a day and finally ,she(Kylie) gets her xray and her injection for MIBG scan tommrow. We wait for a bit longer and the x ray shows................. guess what........... The needle was NOT properly placed!!!!!! her port was fine!!!!!! I however was not fine, excuse me but i was pissed. I was so mad, it was a long day and after all was said and done I was RIGHT!!!! The whole time from the beginning I said it "needs turned", and "its not in" well guess what, it needed turned and it wasnt in right... I digress...... We got back to Childrens in at 4 pm.......I feel that ,while I understand that this hospital does there own thing when it comes to procedures and they know those procedures, they need to understand, that I know my child better than they know thier procedures.... enough of my ranting, Its over now, all is well....
This is a good hospital, I cant really complain. There are people staying at the inn with us from, New Zealand, africa and Portugal. We are very blessed that a hospital like this exsists and we dont have to leave our country to be here. Please pray for these families that dont have the luxury of travelling just a few hours away to home. The one family is here for another 6 months and they are in bit of a culture shock. Having a sick child is very hard and stressful,I cant possibly imagine that on top of the possibility of losing that precious child you have to be so far away from your comfort zone called home......
Tuesday, May 31, 2005 3:37 PM
We are here in Bethesda MD at the NIH and we are safe. Our trip was, for the most part uneventful we had gotten lost but only went about 5 miles out of the way, so it wasnt so bad. We had to make more frequent stops due to my poor feet swelling upand me needing to potty more and stretch more.. We are staying right on campus and its very secure,its a gated campus in a decent area. The childrens inn is absolutly beautiful(I have pictures, of course)
Today was our first appointment at the hospital and it went very smooth. The strange part was everyone was so punctual. That sounds weird but we went from appt to appt and the nurses even took the time to walk us personaly to our next appt, there was hardly any real wait time. We think it will work out just fine..
Our day starts early tommrow with a 6;30 am bone marrow aspiration, MIBG injection and a visit with our case worker to set up travel plans and arrangements for our next appt. We hope to start the ABT this friday and actually come home by the 7th instead of the 9th. I think since I will be traveling alone with Kylie on our next trip, we are gonna fly. This weekend we are gonna try and get out and about maybe go the zoo or something just to get away and explore. So far all is going well and we arent having to much trouble.
Thursday, May 26, 2005 6:10 PM
All is well in the Houtchings household. Kylie went to the clinic today and her counts are recovering beautifuly. Not as quick as we thought they would, but hey cant complain, they ARE recovering! We are down to once a week appointments, instead of twice, I think I'll enjoy that while it lasts. I have a feeling that once we start this new treatment, they'll want to monitor us more frequently, again.thats our life.
We have our dates set up for going to Washington DC, we will be leaving on Monday the 30th, to be seen Tuesday, and do some tests and hopefully start our first round of ABT-751 (Oral chemo pill). We hopefully will be returning home on June 9, just in time for Alexs Lemonade stand. We will unfortuanatly miss the Relay 4 Life, but theres always next year.
Not to much else going on, just some light cleaning before we go,(I love coming home to a clean house). leaving on a trip like this is always stressful for us(new hospital, diffrent way of doing things, etc), but we always manage through, after all we have each other. Sometimes just going on yet another "medical" trip is scary for us and it means sacrifices and\or changing our plans,and thats just plain hard and I hate it,but sometimes being left out and making sacrifices for Kylie are worth it if I get another day. If this drug does what we want it to, this stressful time will hopefully be worth it. I wish sometimes I could put in words how this whole thing REALLY feels, but I just cant..... Sometimes I wanna just run all around the world with kylie from hospital to hospital searching for what may be the cure and other times I just wanna stay home, snap my fingers and POOF she never had cancer, but I know thats not possible. Instead we move on from treatment to treatment just hoping and praying that this one is going to be better than the last. I just put my faith in God. No matter what, everything is gonna be ok.
We plan on doing some fishing this weekend,(to relax) and maybe hook up with some friends ,play some cards,grill some burgers and just chill out and relax(reflect and de-stress) before we go, so we can hopefully have some fun on our trip. Stress or no stress, we are very blessed to be able to participate in a study like this, It may not help Kylie(of course we hope it does) , but it will help somebody elses kylie down the road ....
Saturday, May 21, 2005 12:32 PM
Sorry about the long time period between updates.All is going well here.
We are moving ahead in our planning for next step treatment, and it looks like we will be headed to Washington DC for a drug called ABT-751. We have been in contact with NHI(the hospital) and, we are setting things up for our first trip to be evaluated and get started. From the sounds of things it could be soon. When I say soon, I mean soon, like possibly end of this month soon, so we'll soon find out for sure. The hopes with this drug is that it may hold Kylie back from relapsing and if she does at least hold her disease stable until something comes else along. This is now a phase 2 study with decent results. This is by NO means a cure, but, it does sound promising to us.
Some things that were discovered in our communications with the drs was that, this drug is to be taken for 7 days and 2 weeks off and then back to DC for our prescription, since it is a study ,they are the only ones besides CHOP and Chicago that have this drug. Yes, you read right that means monthly trips to washington DC for, quite possibly, if this works well for Kylie , could be the next 2 years or longer. The good news is because this is a study and it is completely funded by the goverment then, after our initial trip, transportation and lodging for Kylie and one other person (either James or I) are payed for. Thats a good thing that helps, lets pray this drug helps also..... we are truly blessed to be able to do something like this.
Dont forget Cleveland Heights ....RELAY 4 LIFE..... June 3rd and 4th, and on June 11th in the Curves parking lot in Vermillion, Ohio.. We will be helping fight pediatric cancer 1 cup at a time with ALEXS LEMONADE STAND hosted by Kylie Houtchings and friends and family........ Thanks for your support and love. We couldnt have gotten where we are today if it werent for our family and friends.....Kylie is the most blessed because she has 3 sets of grandparents and more awesome aunts and uncles than I cant count on one hand, that surround her and each other with lots of love..I could go on and on but My pregnacy hormones are kicking in and I'm about to cry.....SMILE..... have a good day and take care love to all.
Tuesday, May 10, 2005 9:29 PM CDT
Today was a good day! Kylie went back to school, and just in time tommorow she has a field trip.
Yesterday was a clinic appointment and all went well, we needed nothing, no platelets or anything. We were also told she could stop her shots(YEAH). her counts are starting to recover, her platelets were around 57, not great but not bad either.
Our next plan of action is the usual, wait wait and wait some more..
Our next venture will be an oral chemo pill call ABT-751, that doesnt cause hair loss. The idea behind this drug is to keep her from relapsing and if she does relapse to hold her disease steady and minimal. This drug will be coming out of Washington D.C. Which means every 3 months we will have to venture down to DC for tests and a 3 month supply of the drug. As far as we know, if everything goes well we can do this drug indefinatly. In order to be eligble, she cant have any transfusions 30 days from her last transfusion(which was a week ago), and she has to maintain a certain count level, plus some other stuff we havent worked out yet. right now we are just waiting for her counts to be at certain point before we can go any further. That should be about 4 weeks give or take.
Our dr. also informed us that he has been receiving weekly emails from Houston on how well kylies lymphosites are doing. That is always an option out there for us, because the stuff they are making in Houston can be frozen once it is done being made.
Other than the fact that we all have head colds, we are doing well, and feeling pretty blessed......
Thursday, May 5, 2005 1:31 AM
Well, so much for platelets being ok... On Monday they were ok at 41, well today they were 8, yes, just 8. So, here we are receiving platelets, and watching Lemmeny Snickets and a Series of Unfortunate Events.... Other than that all is well. Her white blood count is recovering and her hemoglobin(blood) is holding steady and her overall count is improving. Not quite enough to go back to school just yet but getting there. She is still receiving her neupogen shots daily, and will continue with those until the docs tell us to stop.
Other news: coming up on June 3rd and 4th is the Relay for Life here in Cleveland. Kylie,James and I will be on the Peds Oncology team for the cleveland clinic, so please consider supporting us and this wonderful cause.
Also coming up on June 11th another great cause, Kylie will be hosting her 2nd annual National Alexs Lemonade stand. She will be hosting her stand in Vermillion,Ohio in the Curves parking lot(on rt 6, next to Rite Aide) from 11am till whenever, there will also be a raffle, all proceeds to go to Alexs lemonade stand fund in Phillidelphia, PA, to support and fund peds cancer research! Please join us in "fighting cancer 1 cup at a time". Alo see link at bottom of Kylies page. what a busy time ahead of us and its such a blessing.
Monday, May 2, 2005 1:22 PM
Kylie is doing well, here we are sitting in the clinic receiving blood, just like I knew we would be. Her platelets are doing ok at 41 thousand, low but ok. Hopefully within the next week or so , we will be seeing some results from the stem cells, we just recently gave back to her.
In other news, "Kylies baby" is doing well. We all went to Toys R' Us and Walmart this weekend and registered for our baby shower, and so Kylie would feel a part of things we let her scan a few items that she picked out, and afterwards we went and did some small shopping just for Kylie. I am so excited and sooo nervous all at the same time, Kylie is 9 years old and I am starting all over again. What a blessed experience this will be for us all.
Please prayer for a family here at the clinic whose little one is the hospital with some complications. For privacy reasons I wont go into names or details, just know they are a wonderful and special family.
Friday, April 29, 2005 11:19 AM
Everything went very well in the hospital, no complications, no reactions and no serious side effects. Kylie does however smell funny, to me she smells like olive juice(smile). This is actually a completely normal thing that will go away in a few days. The preservative they use in the stems cells has a strange odor and dissipates out of the pores. She is not nearly as strong smelling as she was yesterday!
The whole event went rather smoothly. Only draw back we had was when we arrived at the clinic we discovered, that kylie needed another port for a certain medication they couldnt put through the mediport in her chest. They had to put an IV in her arm, and Kylie was not happy! She did extremely well, better that I had thought she would do. I thought for sure she was gonna need to be held down, she made her share of fuss, but when it came down to it she was quite calm and actually helpful, she was positively amazing.
Kylie has come along way from when she was first dignosed, back then , she was having NONE of it!!! She fought everything from the nurses looking at her,to taking pills to everything and anything. Now she takes pills, talks to and helps the nurses, cracks jokes with her DR, helps out and even gives guided tours of the clinic to student nurses and new patients. I am very proud of my grown up baby girl.
I am in no way shape or form glad we have cancer, however, we do feel very blessed for the people we have met,and the enriching,learning and growing experiences we have had.
Tuesday, April 26, 2005 6:56 PM
We have made a our decsion regarding Kylies' stem cells. James and I weighed all our options and discussed the pros and cons. The pros outweigh the cons and without good counts, there are no options. We will be giving her stem cells back. Our doctor assures us we have made the right decsion. Since is no real benefit in waiting any longer the plan is this.....
Tommrow we will venture into Cleveland, bright and early. We will then go through our normal day of having her blood drawn and checked. Then as we wait the hospital will be booking us a room for a 24 hour observation. Kylie will get her cells back sometime after we are admitted, along with platelets and nuepogen if needed. No need to worry its just observation, nothing major! They want to make sure Kylie doesnt have any reactions to the preservatives they use in the stem cells.
Our goal is that these stem cells will stimulate Kylies bone marrow and her counts will recover quicker so we can move on to treatments that may or may not keep her from relapsing. One day at a time!
In other news Kylies soon to be little sister (Jackie JoAnn) is doing well and moves and kicks quite a bit. We are all very excited. We are very blessed!
Please send up prayers for my cousin, whom over the weekend, his dear sweet wife passed away. She was young and my prayers go out to her family. We were blessed to have known her.
Thursday, April 21, 2005 12:53 AM
Here we are in the clinic again.I had said on Tuesday,that today we would be getting platelets and neupogen IV,so, Thats what we are getting. The drs have decided to do neupogen every other day instead of every day,thats a good thing.
We now are faced with another big decision. To give Kylie back her own stem cells in a few weeks or not,to treat or not to treat right now. Some may ask, if her scans are clean what are we treating?? Good question and I finally have a semi-decent answer to that very question...
We know that Kylie has a mean cancer that will almost for sure rear its ugly head again.(wouldnt be the first time). Her scans may be clean now, which is a good thing BUT,she still has small levels of neuroblastoma in her body that we just cant see. We should treat those levels now, as its a alot harder to treat once those levels start increasing rapidly and aggressivly(which is a BIG possibility).
If we decide to give her back her stem cells whithin the next few weeks, it will bring her counts up to a point where she will be eligble for diffrent treatments. Right now its hard to be elegible for anything with low counts. If we wait for her counts to come up on thier own ( that could take anywhere from 8 weeks to several months,and its already been 7 weeks). She could have a reoccurence while we are waiting, and that is NOT an option we want to explore!!.
other than all that medical jargon. Kylie is her usual happy and "healthy" self. all is going well in the Houtchings household.. we are blessed.
Tuesday, April 19, 2005 1:10 PM
Here we are at the clinic, today we need blood and her neupogen IV. On thursday we will need platelets. Other than that all is going well. she is not technicaly neutrapenic persay but, she is on the low side of low so, to be safe we are calling her neutrapenic. All is going well, just a long day, but thats normal for us.
We had a nice trip up to Michigan, over the weekend. Cabellas is a cool place with lots of neat and expensive stuff. If we had a billion dollars then we would have the nicest couch and love seat set right now ( they were our colors and everything). Thats ok , we are not rich in money, but we are the wealthiest in every other way! The trip was an overall success.....
Kylies soon to be little sister (Jackie JoAnn) is doing well and moving alot. We are all very excited about August coming.
We have also signed up to be on the peds/oncology team for the RELAY FOR LIFE here in Cleveland this June, so we will be around asking for support on this excellent cause.
Also coming up in June is Kylies, ALEX'S LEMONADE STAND, it will be held in the Curves parking lot(*next to Rite Aide, on Liberty Ave) in Vermillion, Ohio. I will definetly put more details up about both events, as the time nears.. We are most blessed in this life.
Friday, April 15, 2005 12:31 AM
GOOD NEWS, GOOD NEWS!
Kylies MIBG scan came back CLEAN,CLEAN and CLEAN. All is well , I pray we can keep her that way, but then again thats up to God. So,I'll take what I can get... Praise God.
We are currently sitting at the clinic receiving platelets and her first round of neupogen through IV, so we can spare her a shot tonight. She will start her shots tommrow for sure.
We cant do alot this weekend but, we can still make the best of it. We have decided to go on a road trip to Michigan to a great store called Cabellas. It shouldnt be to crowded.
Kylie has recently set a goal for herself and hot dang, we are gonna achieve it! Kylie wants to have visited all 50 states by the end of the year 2009.. Lets get moving we have 37 more states to go... Big smile!!!!!!
Tuesday, April 12, 2005 7:53 PM
Its been busy, busy here. yesterday we completed a CT, a bone scan and a clinic appointment in one sweep. At the clinic appointment we learned that kylies counts have dropped to a mask wearing point, and within the next week she will be starting up here neupogen shots.These shots help to keep her white blood cells,(cells needed to help fight off infections),up a little higher. I hope that makes sense.
Today we did another clinic appointment, a heart echo and an MIBG injection for the scan tommorow. her counts havent really changed drasticly from yesterday. her blood is holding at 8.8(they transfuse at 8 or less) her platelets were 69 on monday and today were 51. No transfusions at this time, but they want us to come back on Friday to "fill up her tank" That will make 4 trips to cleveland in one week, I honestly dont know how those people who commute, do it everyday. Im exhausted on just the 2 trips I've already made.
The results of the CT are in, all looks well. The spot on her lung seems to be clear, The bone scan only shows one spot on her femure(upper leg). Frankly, the drs arent convinced thats even cancer, they think it could be bone remodling and/or scar tissue from all the previous tumors. We'll find out for sure with the big scan coming up tommorow. Although her scans are seeming to be clear, and this is good news for now. The truth is , we do not trust this aggressive cancer and we will not ever, for a second, be fooled by clean scans ,until they come back that way for 5 full years. I am extremely happy with our results, dont mistake me, but I am also fully aware that there is currently, no known cure for neuroblastoma. I will not for a moment stop fighting for my daughter, until we are not 100%, but 500% sure, that her cancer is gone.
The other good news is that we have heard back from Houston,Texas. We sent kylies blood there for an experiment with lymphocites and antibodies ,in March while Kylie was undergoing MIBG therapy. Well, although not done yet ,They have sucessfully regrown Kylies own Lymphocites and will begin attaching antibodies to them. Its alot to swallow and hard to explain, just trust me when I say this is a good thing. As the time nears and we may possibly head off to Houston, I will explain further. Thats not for months anyway. One day at a time!
Tuesday, April 12, 2005 7:53 PM
Its been busy, busy here. yesterday we completed a CT, a bone scan and a clinic appointment in one sweep. At the clinic appointment we learned that kylies counts have dropped to a mask wearing point, and within the next week she will be starting up here neupogen shots.These shots help to keep her white blood cells,(cells needed to help fight off infections),up a little higher. I hope that makes sense.
Today we did another clinic appointment, a heart echo and an MIBG injection for the scan tommorow. her counts havent really changed drasticly from yesterday. her blood is holding at 8.8(they transfuse at 8 or less) her platelets were 69 on monday and today were 51. No transfusions at this time, but they want us to come back on Friday to "fill up her tank" That will make 4 trips to cleveland in one week, I honestly dont know how those people who commute, do it everyday. Im exhausted on just the 2 trips I've already made.
The results of the CT are in, all looks well. The spot on her lung seems to be clear, The bone scan only shows one spot on her femure(upper leg). Frankly, the drs arent convinced thats even cancer, they think it could be bone remodling and/or scar tissue from all the previous tumors. We'll find out for sure with the big scan coming up tommorow. Although her scans are seeming to be clear, and this is good news for now. The truth is , we do not trust this aggressive cancer and we will not ever, for a second, be fooled by clean scans ,until they come back that way for 5 full years. I am extremely happy with our results, dont mistake me, but I am also fully aware that there is currently, no known cure for neuroblastoma. I will not for a moment stop fighting for my daughter, until we are not 100%, but 500% sure, that her cancer is gone.
The other good news is that we have heard back from Houston,Texas. We sent kylies blood there for an experiment with lymphocites and antibodies ,in March while Kylie was undergoing MIBG therapy. Well, although not done yet ,They have sucessfully regrown Kylies own Lymphocites and will begin attaching antibodies to them. Its alot to swallow and hard to explain, just trust me when I say this is a good thing. As the time nears and we may possibly head off to Houston, I will explain further. Thats not for months anyway. One day at a time!
Thursday, April 7, 2005 2:16 PM
Here we are at the clinic again. Today her platelets are at 18 so, we are currently receiving platelets. For the first time in our nearly 3 year adventure, Kylie is having a reaction to the platelets. nothing to be alarmed about just some hives, easily corrected with some more benedryl. Theres a first time for everything! Not to worried, we are in good care here.
Next week we start off with a repeat of all her scans. I cant believe its been 6 weeks since our treatment in Philly already. We will be at the clinic all day, Monday,Tuesday and wednesday. Please pray that all goes well with getting back and forth and that her scans come out ok.
In other news, although Kylie misses school very much, she has started at home tutoring and so far everything looks well. She has a test coming up soon and has homework to occupy her time.
Tuesday, April 5, 2005 10:23 AM
Yesterday we went once again to the clinic and all is ok. Her platelets were at 70(which for her is pretty good, we'll take it). her hemoglobin(blood) was 9.9, they will transfuse at 8 or less.I am happy to report that she is not neutrapenic,as of yet. She is however very close,I guess we can say she is just teetering on the edge.
On the downside of a seemingly normal appointment, We have decided to add to our already hectic schedule. Kylie found a bump,in her mouth, on her gum that was to be honest, grose. They checked it over and determined that it was an infected absess from a decayed tooth.We are now on antibiotics for the infection. That decayed tooth, most likely from all the chemo treatments and not being able to properly care for her teeth due to low counts. Our wonderful receptionest was able to get us into the dentist right away, that same day. The verdict is, not only is that tooth decayed and that absess infected,the adult tooth coming in behind it is turned sideways and unable to grow down with out some help and pushing all her other teeth sideways also. Basicly, her mouth is to small for her adult teeth to come in properly, (All those years of calling Miss Ky a big mouth, I was wrong Haha.)... The plan is,the decayed tooth comes out and something called spacers are to be put in and cemented down to push all her other teeth together to make room for the incoming permanent teeth.(sounds like braces to me) I guess,I can look at Kylies decayed tooth as a blessing, because if not for this tooth, who knows how long it wouldve been before finding out about this and the pain it may have caused. My thinking is for a little dicomfort now, we may have saved her a lot of pain down the road. Kylie says, if they pull this tooth she still wants to put it under her pillow,"as not to get jipped by the tooth fairy" (SMILE)
Thursday, March 31, 2005 2:51 PM
Well, here we are at the clinic, getting Kylies "tank filled" with platelets. Today they were at 20 (norm 150-400),that actually isnt to bad for her. Her blood is dropping,but not alot and her overall count, is actually improving, basicly I was saying before that Kylie would be neutrapenic this week and so far she is not! Im still debating on weather or not to send her back to school, I think I'm gonna wait and see how next week goes and go from there.
She has her scans for disease evaluation coming up in a few weeks. She will repeat all of her scans,(MIBG, CT, bone scan and MRI) and a heart echo. Hopefully we will see where she is at, if her cancer has improved,stayed the same or(pray,pray,pray)gone away. Whatever the outcome, Im sure it will all be ok..
Wednesday, March 30, 2005 9:38 AM
We are home, from Washington D.C. and it is my great pleasure to say our trip was a tremendous success! We had a great,great time!
We stayed in Arlington,Virginia at a beautiful hotel with a sky top resturuant and indoor pool. We were a hop and skip away from D.C. Once we arrived,we parked the car and never moved it again,except to sadly drive home.
Thanks to a wonderful angel,(that we never even got to meet), we had metro(subway)passes waiting for us. When we we were'nt on the subways, we had no problems finding cabs. Neither I nor James had ever been there before so, seeing everything for the first time with Kylie was just too special.
A rundown of all we saw and then on to a toooo funny story.. We saw the White House,The White House front lawn( where we did roll an egg for Easter,in the pouring rain),The Lincoln Memorial,Vietnam Memorial, Korean Memorial,Washington Monument(We did not get to go up in it,due to construction),The Capital Building (where there was a protest going on),The Smithsonian Castle, several museums in the area and we also ventured into the Arlington cemetary where we saw the Kennedys graves and the eternal flame. We did alot and took our time, it was a very peaceful vacation. Kylie did get to swim , but only once. The hotel pool, although indoors was very cold for some reason.
Now for the funniest story(at least to us ,its quite hillarious.) There we were at The white House, waiting for our self guided tour. When we kept hearing this beeping noise. At this point We had already emptied our pockets into an x-ray machine, and we had no medal on our persons. A security man walked over to us with a detection wand and waved it over Kylie ,then James, then me, and went back to Kylie again, then James and I once more. The beeper thing was going nuts everytime the security person got real close to Kylie. He finaly pulled the 3 of us aside and asked us if she(Kylie)had , had any type of radition treatment recently?.(yep, she had,just a couple of weeks ago, high dose radiation(MIBG)on March 2,to be exact.. TOOOOOO FUNNY!). So, James whips out a card, with the number of the head radiation guy in Phillidelphia,(Glad he had that!). Security then seperated us and had just me and Kylie in a room where he took all her information (name,address and such,) put it all into a big black notebook, and explained to us that she was slightly radioactive but did not seem to be a threat(I thought to myself,just dont pull her finger..hahah).He gave her a folder with some books and autographed pictures of the president, and told us to have fun on the tour. We did have a nice tour (what a beautiful palace). Despite everytime Kylie passed an alarm she set it off and we were followed by security the whole time. The attention was kinda cool(in a wierd way.)
Once back in our hotel, we called Philly and talked to the radiation dept. This was a first for them,so now they will be sending home letters with the radiation kids about the possibility of setting off alarms.......
The Easter egg roll was rainy and cold but, sooo worth it!!!. Now pray we dont all get phnemonia. All in all, it was the best and it was a blessing for us to go.
New pictures, I have a gazillion so I'll try and change em up as often as possible, so check them out.
Thursday, March 24, 2005 5:10 PM
Today was another clinic day. We received platelets but, NOT because we needed them. This time we got platelets to "fill Kylies tank" (HAHA) before our trip to Washington D.C. Platelets generally only last 2 to 4 days before dropping again, so the clinic figured that if she has an extra "shot", she'll be ok for the trip.
All is well here. We are excited about our trip, we will be leaving tommorow morning. We have our maps,our itinerary, our cameras and our hotel room(with an indoor pool). we are pretty much set. We do need to finish packing and fill up the gas tank, then we are off. I am besides myself with excitement for Kylie(and us too). We are gonna have so much fun and do nothing medical, in fact we are'nt even gonna talk about the fact that Kylie happens to have cancer. This is gonna be just the best. I'll most surely have pictures to show soon.
Wednesday, March 23, 2005 10:35 PM
Exactly 9 years ago at this exact moment in time I was looking at my very rosy brand new baby girl, whom I named Kylie Maddison. I was so tired and exhausted yet I couldnt stop staring at this tiny 7lb 13 oz human being. Its such a strange sensation feeling life move around inside your body, and for nine months its you and that soon to be person. Then they are born and suddenly you have to share them, and they start growing up. They start rolling over, sitting up,crawling, walking and talking. Its truly a miracle, and With each milestone they are gaining independence, and losing that dependence. Sometimes it seems sad, but I wouldnt change anything I have with Kylie for the world.
Someone once asked me who my hero was and at one time I couldve named off anyone famous or what not. Now, I cant wait to tell the world, my hero is my 9 year old daughter, and when Jackie gets here and starts growing up she'll be my hero too. Thats the way life should be. I have been blessed with a loving, awesome, generous, supportive, and caring husband(hes good looking too..smile) and 2 way cool children. Today my daughter celebrated her 9th birthday,I dont know what she wished for as she blew out her candles(I didnt ask), but I secretly wished for her to be as blessed and proud someday, as I am today and everyday.
Tuesday, March 22, 2005 11:14 AM CST
here we are at the clinic, awaiting platelets. Today they were at 15(150-400 norm.). just this past Friday they were at 29, which means they are dropping pretty quick this time. Thats ok, nothing we Houtchings cant handle! Her ANC is also dropping pretty quick. The low normal for an ANC is 1.5 and today Kylies was 1.7. The ANC is the overall count that tells us that Kylie is most probaly gonna be neutrapenic soon. Neutrapenic means, we start up the shots again,limit visitors who could possibly be sick, wash our hands excessivly and watch for fevers and/or signs of infections. Again nothing we Houtchings cant handle! I guess this trip to Washington comes just in time. We are so very blessed, with great support, loving family and just all in all good care.
Sunday, March 20, 2005 10:31 PM
All is going well over here. we have begun spring cleaning already and I'll tell you the trash men just love picking up our trash(smile). It started with just cleaning out kylies room and the guest room/playroom/soon to be nursury, because We bought her a new bed and pitched her old one. well before ya know it, you have several bags of toys that will be donated and a bag of broken old toys and then trash. once you start you cant stop,so, our bedroom, living room ,laundry room, kitchen and every closet that exsists in this house,is next on the hit(clean)list.
Kylie will most likely be getting platelets this week as on friday they were down to 29 (150-400 norm). She is doing great and very happy that in "a couple of days,she will be nine" shes told everyone and anyone who will listen.We are also looking forward to much needed vacation.
We allowed Kylie to play hookey from school,for an ultrasound(sorry teach). All went well, we saw a head, 2 arms,2 legs and a spine. oh yeah I almost forgot, its a girl! Kylie is very excited, we picked out a theme for the nursury, Noahs Ark. we are truly blessed.
Tuesday, March 15, 2005 9:10 PM
All is going well here. We went to the drs yesterday and Kylies counts are doing ok. Her platelets have dropped some more. They are now at 44(the norm being 150-400),now this might seem to be pretty low and it is, but, we have had them lower. Our doc thinks in the next week or so she will most likely need a platelet transfusion, again nothing we havent dealt with before. The main thing is, Kylie is doing GREAT! She is in full "Kylie" spirit,even after we informed her that most likely in a few weeks, when her counts really drop she will have to start her neupogen shots again.
Kylies birthday is coming up and we are planning a quite celebration this year. The weekend after her birthday,which is actually Easter weekend, will be her real birthday present. We are planning a trip to Washington D.C.. Our plans include an Easter egg hunt on the White House lawn (thanks to our wonderful social worker at the clinic),a tour of the White House and some museum tours. This will be a relaxing,fun and educational trip for us all. Oh of course,our hotel will have a pool(smile). We are all looking forward to a vacation that will have absolutly no medical bearing at all. We are very blessed!!! I posted 2 new pictures.
Thursday, March 10, 2005 5:34 PM
All is well. We had a drs appointment today and everyone was glad to see us.
This is the first week out of the MIBG treatment,so her counts should be ok for a while. They checked and,her platelets did drop a little. They were at 60(the norm is 150-400). Her platelets were just recovering to the 90's right before we left, for this treatment,so this really doesnt suprise us that her platelets have already dropped.
We have learned that during any kind of count dropping treatment,( certain chemotherapies and radiation treatments),its the platelets that are most likely to drop first and be the last to recover. Our dr says that most peoples bodies mass produce platelets(these are the cells that help our blood clot properly and heal bruises.), so when our bodies are hit with certain drugs, it wants to keep and continue trying to make the more important cells like white blood cells( cells that fight off infections) and ,or red blood cells. Now granted, not all chemotherapy and radiation drugs will mess with the counts, but this is defintly the case with Kylie.
Sunday, March 6, 2005 10:01 AM
We arrived home safely at 3:30 am saturday morning. Our trip home was uneventful. We took our time and stopped,relaxed and ate and got gas then headed back home.
When we got home we were greeted by our cats who were so excited,they followed us all over the house rubbing between our feet and tripping us.They were either very happy or very annoyed that we were gone for so long,that they thought tripping us was the right thing to do.(SMILE)
All is well , today we will spend just chilling out unpacking and getting ready for the week ahead of drs appointments. Its good to be home.
Friday, March 4, 2005 3:43 PM
We are being discharged today and will be heading back home here shortly.
All is going very well, her level of radiation has dropped. The standard number she has to be at, to be considered safe for the public is 7 and this morning her level was 4.5. I cant tell what exactly the number means, but I can say she is considered safe for public. Needless to say we will be on the road and headed west here in about 20 minutes.
Kylie has done exceptionally well this treatment. She did get sick and vomit about twice, nothing serious.She remains in great spirits and is looking forward to coming home. It should take us about 8 hours(give or take).
Once we get home we can do all our follow up in Cleveland.We will back to our twice a week appointments for a while, and her counts will drop and we will mostly likely need transfusions and such, nothing we havent done before.Right now we are just focused on getting on the road and on our way. Home sweet home here we come! Im sure George and little bear are just as anxious to see us, as we are them. My dad has been harrassing them since we left(haha) Aunt Carol made it to the airport with no problems, so Im sure shes home now. Thanks for all the prayers. One more prayer request;please pray for all the families that may not get to go home for a while, there are families here from other countries, and believe me, its tough dealing with sick children AND being away from home, so please remember these families in your prayers. We are blessed to only be several hours away, it could be harder. See everyone soon.
Thursday, March 3, 2005 6:19 PM
We had a slight weather related delay,so Kylie didnt get her radiation treatment on tuesday as planned. Instead, she got it yesterday and so far all is going well... She is in pretty good spirits playing the playstation and waving at me from the window...
As for the rest of us, all is going pretty well, Carol, James and my mom having been switching off pretty regular and its been working out pretty good. I do come and see her through the window of course, and its actually not so bad. Of course we are looking forward to going home. Carol will be leaving us in the morning to catch her flight home, so pray for her safe travel. She has been a tremondous help and its good to know we have a family like ours. We are so blessed. I thank God for our family and the way they surrround Kylie and us with love.
Monday, February 28, 2005 4:54 PM
Hello....... sooo sorry for the lack of updates this last couple opf weeks has been crazzzzy! so here it is in a nut shell.
We are safe and sound in Phillidelphia PA. We had a very nice ride over here. We stopped off in Hershy to swim, relax and tour the chocolate factory. We also got to see a really cool 3-d show about chocolate. Kylie did have a small bout of sickness but nothing major. We were able to meet up with kylies papa and aunt from Indiana( they flew in to help out).. All went uneventful, We were able to get into the Ronald Mcdonald house with out a problem. Later this week while my mom stays with Kylie, James ,Carol and I hope to get out and go the Gallery mall around the corner from here.
Today We have been officially admitted into the hospital and so far so good. Tommorow the treatment begins and I will not be hanging around due to radiation levels and pregnacy. If all goes well,we will hopefully, by this time on Friday be heading back home, to good old Ohio. I hope by then all this snow has cleared up.
To recap, the last couple of weeks has been scans and test and here are the results.....
bone scan showed positive in her ribs, right knee, both shoulder blade areas and left clavicle, BUT, our dr isnt to concerned with bone scans because you can never really tell if its actual disease or bone remodling from previous lesions....
Her MIBG scan, however did show all these spots and these we know are actual disease. We know this treatment will improve,(if not get rid of) these spots.
her Ct scan showed negative.This is good meaning her spots are just that spots not tumors, her MRI of her head also showed negative so there are no spots or tumors in her head.
her bone marrow also came back negative which is excellent news. Thats such a blessing Praise GOD!
All is well here and hopefully we will be home in no time....Cheryl, sorry havent been able to get in touch ,james will be calling you soon, tell everyone we love em...Kristen, you better behave, so you can go to some of kylies clinic appts, ya know shes gonna have alot of them once we get home.....
Wednesday, February 16, 2005 2:05 PM
NEW PICTURES!!!!
It's been an extremely busy week and its only half over..
I am very happy to report that Kylies platelets have made near full recovery on thier own! Last month her platelets were just casualy hanging around in the 60's and 70's,(normal 150-400) we were then told thats this was as good as it was gonna get. Since we are talking about Kylie and odds, once again she has suprised us with her ability to prove everyone wrong, and her platelets on Monday were an awesome 115!!!!
This week we have spent most of our days trecking around the Cleveland clinic for this scan and that scan. Attempting to prepare for our trip to Philly on the 25th of this month. we have so far completed all of our blood work needed, a bone marrow aspiration and 2 out of 4 scans. We still need to complete a heart echo, kidney function test, and a 24 hour urine collection( if it were up to me I'd rather collect hockey cards...HAha)... Anyway, we also have to throw in regular check ups. By the way, baby and mom are A-OK. Today was my drs appointment, so I sent miss kylie to school. I heard the heartbeat of the little brother or sister and it was pretty cool. Despite all the extra running and crazieness all is going well. We cant wait to come home from Philly because in March we are looking forward to a sonogram. dont ask if we are gonna find out what it is, we already know......its a ..... BABY!!! We are so blessed and and looking forward to our little mini vacation.
Sunday, February 6, 2005 7:42 PM
All is well here. We have a date for treatment(YEAH). It will be on March 1st, which means she will be admitted on February 28th. We will be driving, so we will be making our way on the 25th.
I can not participate in kylies treatment while she is in isolation due to radiation levels and such. That saddens me a little, but it is for the best. I take comfort in knowing this by far is such an easy treatment with very little pain or discomfort(if any) for her. I can actually handle being on the side lines for this one. My wonderful husband, mom and sister will be plenty able to watch Kylie, or should I say kylie can watch them.
Im not sure if Ive ever explained just how simple and uninvasive this treatment really is. Kylie is isolated and put in a room made up to look like a bubble and stay in bed behind lead shields but, she is alert and plays the playstation or flys paper airplanes across the room. The last time they sent in paints and a paintbrush and she painted the shields she had to sit behind so she could at least have some "scenery". My point is, yes this is scary but, not because of anything that happens during treatment itself. Its mostly scary because its a strange place with diffrent rules and procedures than we are accustomed to. I feel we are very blessed to be going this soon because originally I was under the impression that we would not be able to go until the end of March,some time in April. The thought of waiting to much longer is scary in its self. We are surely blessed!
Wednesday, February 2, 2005 7:04 PM
Well, we went to the drs and we have a somewhat,gameplan. For starters we are gonna stay on acutane. As long as Kylie is NOT experiencing any pain, we will not be doing any type chemo as of now(this may be a comfort option later). This plan calls for another treatment of MIBG in Phillidelphia. There is however a waiting list and the earliest they will be able to get Kylie in is March/April. So,acutane is currently the only thing we have. Let me rephrase:Prayers and acutane are all we have.
Let me give a brief history of what we are dealing with...In July of 2004, Kylie received a high dose of radiation through her port,in Phillidelphia. So high in fact she was deemed radioactive and kept in isolation and was behind lead shields (no worries its standard procedure) for 5 days. We came home, and exactly 5 weeks after the treatment her counts began to drop. 3 weeks of daily nuepogen shots , 2 blood transfusions, and 17(yes, I said 17) platelet transfusions, her counts after all this began to come up on there own. 5 months later her counts and immune system are still not totally up to par. Her counts except for her platelets are all on the LOW side of normal. Her platelets however, are bouncing in the 70 and 80 thousand range(normal being 150-400 thousand).
My point with all this information is, the chances of kylies counts recovering on thier own after having this treatment again would be nothing short of a miracle( of course I believe God shows us miracles everyday). The chance kylie will need a stem cell rescue is most likely. Praise God she has some left from her 2002 stem cell harvest. Another kicker is since 2002, she has grown( praise God)but the stem cells she has left are just enough meaning thats all we got. I am at an issue as to when we do use them, its at the right time and they dont get wasted or become useless(it could happen). Im not gonna worry to much about that now. When that time comes I'll have all the guidance I'll need. Thats where we are at right now waiting on a date and planning a small vacation to the liberty city. this is all so nerve wracking march is not far away.
Sunday, January 30, 2005 5:35 PM
FOR WE LIVE BY FAITH, NOT SIGHT.
2 CORINTHIANS 5:7
Kylie recently had an MIBG scan done this past week and the results were not exactly what we were hoping. They saw a few new spots, on her right and left shoulder, collarbone and her right knee. However, I am convinced that if not for the acutane it would be alot worse! Although not happy with the fact that there are new spots, I am grateful that its not as bad as it could be. I have seen the worse side of this particular cancer and not just through kylie but other awesome kids we have met over the last two years. While I grieve for all parents (including myself), that have to face this challenge, I also have to stop, breath and just count my blessings. I pray that all the other families can do the same.
Things are well here despite the test results. On Monday we will meet with our dr and map out a plan of attack and go where ever the lord takes us. Kylie is doing well, in fact kylie brought home a report card and she is doing great in school. I know Im being bias but I do believe shes a genius!
Wednesday, January 19, 2005 10:58 PM
NEW PICTURES!!
Sorry, I havent updated in awhile. Kylie is doing great, shes back in school and loving it. As of right now the only treatment we are doing or continuing with is the acutane, which she just started her 3rd round yesterday. She does have scans coming up next week, so once we do those we'll have a better picture of what we are dealing with and our next plan of action. Untill then then, no worries and all is going well. We find ourselves very blessed to be where we are today.
I also went to the dr and things are going well with me and kylies, sibling to be. Ive been continuing my work outs at curves and all is cool here. Im very proud to say we are just your average family with many blessings.
Recently my dad came over and gave me something very special. A clock, not just any clock, a clock that he made himself and spent many hours on, a clock made with a scroll saw. A clock I just cherish. A miniture grandfather clock thats as beatiful as a beach sunset. and I dont thing I can ever put into words what his gift means to me. so im gonna say thankyou to my daddy for giving me my very own treasure, that someday I can pass down to kylie(shes already put her dibs on it!)!
Thursday, January 6, 2005 6:08 PM
Its been an interesting start to the new year for us... It started pretty normal, with our usual drs appt this last Monday. first I find out that the MIBG scan in New york came back positive compared to the negative one from Cleveland in November. We are ineligble for the antibody treatment at this time. we are ineligble to do any chemo,(it doesnt really work at this point anyway),because of her low counts. We may go back to Philly for the MIBG therapy but will most positively need a stem cell rescue. Which will mean she will not be able to have a 3rd MIBG if needed. We will be sending Kylies blood to Houston, Texas for immunotherapy but the treatment takes 4 months just to make. for now we are gonna try just plain local radiation on her femur, which is the one spot it seems to hang around in.. good news ,the cancer is not in her bone marrow!!
Come monday night Kylie is in pain having headaches and just in a very miserable mood. Tuesday morning shes vomiting and just moaning from painful headaches and complaining that she cant hear anything . I suspect high calcium from the acutane and dehydration. I call the clinic and take her in for fluids. Our dr orders a cat scan of her head. By now Im just a nervous wreck(please dont let it be tumor) our prayers were answered her head and sinus was so full of fluids it was causing pressure buildup. She has a bad head cold, but she needs to be admitted and given fluids and antibiotics and morphine for the headaches. Come Wednesday Kylie is still in alot of pain, not eating and still not holding much down, she is adding symptoms to the list, her eyes are now light sensitive and her neck is sore but NO fever (praise God). Our dr wants to check her for viral meningitus....how scary is that?!! Her first spinal tap ever was performed Wednesday afternoon her fluid was clear( a good sign). I believe that needle that removed fluids from her spine also relieved some pressure from her head. She started to perk up that very evening ,her headaches were less frequent and less painful, her hearing was better and her throat was easing up.Very long story, a little shorter, We are now home but she is still not feeling very well, she hadnt had a bowel movement in 3 days and is a bit uncomfortable. GOOD NEWS: her LP came back normal with no sign of inflamation or infection!! through all this I must say she went through it all very well and im very proud of her!!..... We are blessed, it couldve been alot worse...
Monday, December 27, 2004 9:07 PM
WOW! Its been a busy week for us,because of our trip to New York and our unexpected hospital stay and the fact that we got snowed in, we became cristmas eve shoppers.. Thats ok though we did all right. We spent christmas with our families and thats what its about anyway. Kylie , however did make out very well, not only did she get alot of cool stuff she also found out she is gonna be a big sister..( yep, you read right), that is our christmas blessing. Next August or so Kylie will have someone to boss around..haha
Tommorow is Kylies dr appt and we shall develope a plan of action for treatment. This acutane stuff is awful and Im ready for her to stop! It dries up her skin,gives her nasty exezma patches all over and they itch and burn. Not to mention for some reason when shes on acutane, she gets moody. We try very hard to keep her very hydrated, because another nasty effect accutane has on her is dehydration. We found that out last year. even though she has these side affects, she handles everything very well so we are indeed blessed.
Monday, December 20, 2004 8:42 PM
Tommorow we have a drs appt. Our awesome dr. is out of town this week to spend the holidays with his family, so this is mostly a nurse visit and check up after our short stay in the hospital this past weekend..
I wanna take a moment to thank God for our blessings and to add to the prayer list all the children who are spending the holidays in the hospitals. while we were there I saw the floor was full.
When I was a kid, it seemed christmas never came, and now as an adult, its here and over with before I even know it. The truth is I took this time of year for granted for a long time. The last two seasons have been more joyful for me than they ever have been.
I have a christmas wish, and if not this year maybe next.
Sunday, December 19, 2004 3:05 PM
Hello all, its been a long weekend. At about 1am,Friday morning, Kylie developed a temp of 103.7. I gave her some tylenol and called the dr. We were advised to come on in. Kylie was admitted and given broad spectrum antibiodics. The normal series of tests were given, a chest xray and blood cultures. Everything seemed ok, thy suspected a viral of some sort and the only thing to do for those is let em run thier course. We are home now and all is well.
Today I suffered a small third degree burn on my finger, so my advice for today is... if its hot, dont touch it! haha! Anyway all is good here.
Monday, December 13, 2004 9:13 AM
Home sweet home
Its good to be home amongst the corn fields(hehe).We have been blessed to go to New york, but even more blessed to be home. We do miss the families we got to meet and hang out with for the past week. Its sad but comforting to know we are not alone. as everyday passes I find myself growing and learning to appreciate what I do have and to even appreciate what I dont have.
Tommorow, we have a drs appt and will actually know all of kylies test results. We do know her CT and bone marrow aspirates were all negative( we are still waiting on MIBG scan, urine markers and bone marrow biopsies). The truth is kylies cancer is incurable and even though things dont show up on scans its still there and will most likely relapse. people wonder why we continue treating what we cant see and now I have the answer because for a while even I did not know or understand it. The answer is because neuroblastoma does not die,it hides. One of the drs in NY told us we have a little bit of time to figure out a plan before a total relapse occures. So we work to hold it back untill something better comes along, that may actually kill it. I pray everyday that will be soon. I trust in and give it all to God. So, for now we just stay positive and stay strong and enjoy our lives. We always remember to count our blessings and appreciate all that we have.
I put up some new pictures we have so many, so every few days I'll switch them up.
Friday, December 10, 2004 4:48 PM
Today we trecked all over by subway,cab and intermediate walking, it was wet, raining cold and miserable but we had a great time!! We saw the empire state building and went all the way to the top even though there was zero visability. it was great!!. We walked all around central park.
Kylie and I have been sick and throwing up, we are feeling much better today. Kylie is convinced that she cant eat New York food because there are "no corn fields" here. haha. By the way Mcdonalds, KFC and a whole bunch of fast food places deliver around here!
We have had about 4 gift giving parties since we've been here and one at the hospital so we are gonna have to check a bag at the airport tommorow..We are so glad to be here and meet these wonderful families.
James and I swear we saw John Malckavich eating at a sushie bar yesterday, so thats cool,even if it wasnt him.
Please say a prayer for James family, his grandmother passed away on monday. Funeral was yesterday. Since James and I couldnt be there,we are sending prayers and hugs that way 'till we get home.
Wednesday, December 8, 2004 5:50 PM
Today was a busy day for us. We got up early and headed over to the hospital, which is 5 blocks away. We had a CT, an MIBG injection and a bone marrow aspiration. While we waited for her port to get accessed we enjoyed a magician, a puppet show and a gift giving party. The 9th floor of the hospital is dedicated to the kids. They have a play room that is just huge, its like walking into chuckie cheese. the hospital is very nice and friendly and did I mention HUGE!
We have the most wonderful people here at the ronald house. We have met so far, 8 other children with neuroblastoma,from all over the country, so I feel we are in the right place. We also decided when we get home we are all gonna learn a second language. One of Kylies new friends is from greece and does not speak english, but they play well, I guess friendship is an international language. We find ourselves communicating very well with the non english speaking families....praise God!
On Monday we did make it to the Rockafeller center and that was glorious. We also made it to the FAO Swartz and kylie got to dance on the key board that Tom Hanks did for the movie Big. We also walked into the biggest disney store ever! we walked up and down 5th ave like we were somebody! we plan on doing alot more before coming home on Saturday. we are blessed to be here.
Sunday, December 5, 2004 5:17 PM
We made it! Here we are in the big apple. Feeling like tiny fish in a biggg pond! We made it with out any problems, first thing we did was tour the Ronald Mcdonald House,(which is huge and beautiful). We then found our way to the nearest Starbucks and cheap diner for dinner,lunch and breakfast.
Tommorow we will venture out, find the hospital and way around, then do some fun stuff. On Tuesday we have our first drs appt. Wednesday and Thursday consists of some scans and tests and stuff. We will back home in our less crowded,hometown on saturday! (I will have pictures then)
I am glad we are here and moving forward in Kylies treatment. I praise God everyday for blessing us so.
Monday, November 29, 2004 10:47 PM
We made it home safe and sound from our thanksgiving in Indiana. everyone is doing well. The hardest part about our trip was leaving. Kylie had a great time romping with her cousins. We even had christmas early, complete with tree and the trimmings.(I added one new picture of kylie and her adorable cousins. If I would have had my way I would of brought all them babies home with us).
On the way home early saturday morning,(4am to be exact) James had decided to cut some miles off and get home sooner so we took a diffrent route. well we were about 1 hour into ohio when james spotted a garage on fire, we quickly turned around and pulled in the drive and banged on the door. We woke the family up and out(the garage was pretty close to the house with 2 vehicles full of gas.) they called the fire dept and the guy and james attempted to use fire extinguishers, didnt do any good. I moved the car out of thier drive to make room for the trucks and the woman and her 18 month old sat in our heated car. Everyone was safe and the fire dept got everything under control. praise GOD we took that route and no one was hurt.
Today I called New York about when we need to be there and well, to make a long a long story short, We leave this Sunday and will be returning on Sat the 11th. we got a great deal on tickets and we are all set. Im happy, I get to spend my birthday at home this year (This friday).
tommrow we have a drs appointment with a bone scan and heart echo. busy day for us, but we are used to it. God is good to us.
Tuesday, November 23, 2004 11:39 AM
All is well here. Went to drs yesterday and same old, same old. Platelets are still low but coming up one platelet at a time. at least they are coming up, so for that i'll be thankful. Nothing new on New York yet but soon, so for now we'll just hurry up and wait! Meanwhile, we start Kylies second round of accutane this week. I am very frustrated with the way things are moving. Its hurry,hurry,hurry, for what? I personaly am tired of rushing around just to to be patient!
For thanksgiving this year we are going to Indiana. we plan leaving tommorow and be back Saturday. I hope everyone has a safe,happy Thanksgiving, where ever you'll be, Dont forget to count your blessings, not just on thursday but everyday! we sure do!
Wednesday, November 17, 2004 11:00 PM
Hello all, went to the drs on monday, and once again i am happy to report all is going great! Kylies platelets are still hanging in the 50's but,hey they arent dropping so, we'll take it!
Yesterday Kylies second grade class had a veterans day musical and they did an excellent job. Kylie had her first solo and she did an awesome job! I cryed while James did the video taping. I put up some pictures.
In other news, we are getting closer to New York. I talked to the drs office at Sloan Kettering,(the hospital where we will be receiving the antibody treatment) and we are getting everything set up for a consultation and some test work. We are hopefully looking at the first week in December. Our hopes are to begin the treatment after the first of the year. meanwhile, Kylie will continue on the acutane. We are also planning on making our New york trip a mini vacation. all is well here. God bless
Sunday, November 14, 2004 2:00 PM
Today is November 14.. 2 years ago today we were told that Kylie has cancer(neuroblastoma) and were thrown into a world of medications,surguries,chemotherapy and unknown to us procedures. In due time we would know more about oncology and diffrent treatments than people should ever have to know. I thought, ok we do this, we do that and we are done..little did I know, lots of tears, acts of strenths,weak moments and tons and tons of prayers, here we are 2 years later, far from done!
Today I sit and reflect. I reflect on then and now. Then,I was so scared I barely heard a word the drs told us. Now, Im still scared but I listen and make tough decsions in the best interest of my child. I dont take life for granted and make the best out of everything! I find it hard sometimes to be serious about anything. Do not get me wrong I have my moments of frustration,anger sadness the whole nine yards but, I can not let that get me down, so I quickly get it out of my system and move on with the good Lords help and guidance.
Today I also pay tribute to my husband, who by and by stuck by Kylie and I. James works his ass off to make sure Kylie and I are provided for. Together we can do anything!
I also pay even greater tribute to Kylie, for all she has endured and has bounced back from. I always thought as a parent, I would be the teacher. Now, I see thats not it all, Kylie is MY teacher. To see the world through her eyes is just out and out amazing.
Kylie had a friend ,his name was Josh and Josh lost his eye to cancer, so he wore an eye patch. as an adult, honestly I saw Josh and Joshs' eye patch. Kylie saw Josh and Joshs' heart. She couldnt remember his name one time and she was trying to describe him to me, "ya know, bald, with jeans and a flannel shirt".. I just just didnt know, all her fiends were bald.. Finally after a while of thought, she said "oh yeah he has an eye patch"...
Our journey continues, and no matter what GOD is with us and we are blessed!
Tuesday, November 9, 2004 10:03 PM
this just in: Alexs family just met Alexs goal of 1 million dollars!! I know Alex cant be here physicaly but I do know she is looking down from heaven with a great big smile! Praise GOD! Alex did not die in vain, the money she helped raise around the world will help benefit kids like Kylie, Josh,Graci, Safa and Christi(to name a few to many) also battling neuroblastoma.. parents like us will be forever grateful... way to go scott family!!
Not alot to report. Kylie is doing great despite the side effects from accutane(160mg aday). Her skin is peeling but not to bad, so far the worst are her lips, they are very chapped.
went to the clinic yesterday and all is well our dr was pleased with kylie and her progress. Kylies medical records are on thier way to being faxed to New York ,pending insurance approval. Not real worried about that because Im in no rush to go, accutane is fine for the moment. We are planning a thanksgiving trip to Indiana to see our family , I miss them sooooo much! we need to see them!!!
On November 16 (next Tuesday) at 7 pm the 2nd grade class is having a veterans day musical and my baby girl has her first solo. We are all very excited... American Idol here we come! (hehe) so, basicaly all is going well and God has truly blessed us.
Monday, November 1, 2004 9:42 PM
God brought us to it and God will bring us through it!
Today we went once again to the drs. All went very well. Here it is.... New York here we come!! today we started the ball rolling, I signed a release of medical records and our social worker is getting our insurance approval and then we can set up a consultation.
We will be headed to New york for a experimental treatment called antibodies.. I cant really say alot about what all the procedure is or does but I can say it sounds promising.We do know that this protocol is NOT a cure by any means but its an option we are willing to explore. We do know it is a two weeks on and two weeks off type deal. It involves a daily infuson of antibodies and a rest period. We dont know for how long we can or cant do this treatment. One day at a time.
Halloween was great, we had a bloody good time!! Kylie was a vampire with wings and James and I were supposed to be Bonnie and Clyde (after they were shot).. It was sticky situation for us because I bloodied up our bullet ridden clothes with "blood" (corn syrup mixed with red and green food coloring) it was a sticky mess, but what fun!!! I put up pics of kylie, enjoy and God bless
Tuesday, October 26, 2004 10:04 AM
We went to the drs yesterday,and we have,as a family, decided our course of action. We have decided after talking with our dr, right now we are gonna treat. Kylie started her acutane yesterday. She will take 50 mg twice a day for two weeks then have two weeks off and start again. We will do this for as long as we need to. right now we dont qualify for much, because of the negative scan. Due to the past with Kylie and having dealt with neuroblastoma, many times before the drs are pretty sure she still has cancer. Our dr is a good man who truly loves the children he treats and we feel he would not intentionaly misguide us.
Our plan is to take acutane, wait and scan again and see where we are. Right now our hopes are to keep kylie as "healthy " as possible until something comes along that has great affects or maybe even the cure. The most comfort I have right now is, Its in Gods hands now, it always has been!
We are gonna be ok. Thats all that matters. our next appt is next monday. The day before we vote. Good news, we are down to once a week, every monday....... God bless
next up: new pics from halloween coming soon...! drs appt on monday, discussing possible options... a hair raising fun weekend for us with a couple of halloween parties and trick or treat on sunday....
Thursday, October 21, 2004 3:07 PM
Well hello all, sorry i havent updated but there wasnt a real update till now.
We scanned yesterday and today received the results..... Kylies MIBG scan showed: No Evidence Of Disease. This is good news and bad news all rolled into one. Good news in effect that, they cant find any cancer. Bad news in effect that, we know she still has cancer cells.
A small history on neuroblastoma: an agressive cancer that once treated with normal protocol of high intense chemo, can build up a resistence to that chemo. You can back neuroblastoma off, but you cant kill it easily. These cells will in themselves go into a remission type stage (meaning, cant see them) only to build themselves up and gain strenth, so when you do start seeing them again, they are stronger and multiplyed. This is where things get tricky.
We cant go back to philly because the experimental procedure protocal calls for a positive scan.(ours was negative). we are not YET eligble for an experimental oral chemo pill called ABT-751 because the platelets have to be above 100 and kylies are not.. This ABT pill is a form of chemo but a little more intense and there is no guarentee that it will kill off the cancer but it may keep one stable( as in NO progression), until something better comes along.
Right now we need to treat, and right now are dr wants us to go back on acutane until she is eligble for something else. Acutane was a hard drug for us because it caused kylie to dry out so bad, she was chapped from head to toe, her lips bled, it dehydrated her and gave her headaches. We had to really watch her on that one.
The hardest part is, how can we treat something we cant see and cant really say for sure, that its even there?? The bigger question is how do we know when to stop treating??
They tell us in order to be considered cured and cancer free, Kylie has to NOT have any type of treament and NO positive scans for FIVE YEARS. Given the nature of neuroblastoma, which comes back harder and stronger every time until it CANNOT be stopped. Our choices are limited.. Do we stop treatment and pray for, 5 years to pass us quickly, knowing that if it does come back, before our 5 years, it will come back very strong and hard to treat??? (Keep in mind kylie has relapsed once and the chances of another relapse are very high at this point.) or, do we keep treating something we cant see and hope for the best??? I dont have any answers, I do, however know we are gonna be fine no matter what we decide. our next appt is on monday. until then, WE will talk to kylie and as a family, decide the next step and weigh our options..
On a higher note,James taught me how to put pictures on Kylies site with out them being so big. I've added 3 diffrent pictures and they are all easy to see now, so check it out..GOD BLESS!
Wednesday, October 13, 2004 11:16 PM
Well, yesterday we had yet another drs appt.. A couple of good news points... One, we are down to once a week and two, her platelets were at 61 thousand. Thats the highest they've been on thier own in a long while (YEAH)!
Kylie received her first flu shot. That was, well.... not fun, to say the least. The funny thing about Miss kylie is she will get soooo worked up , you would think the nurse was coming at her from across the room with a 10 foot needle and then turn around 10 minutes later and tell another child getting a shot, "I did it and its not so bad just relax and you'll be ok". I think the next lesson I teach her will be the, practice what you preach, lesson! At least she is thoughtful and considerate and tries to help other kids. I admire that in her.
All is well this side of town. Even when the sun is not shining outside, it is in our house. We hope it shines in your house too! God bless!!
Sunday, October 10, 2004 11:17 PM
Yesterday we attended the Phantom of the opera and we loved it!! We had never seen it, and let me tell you Kylie was totally engrossed! Our seats were excellent, 5 rows from center stage(thanks l.C.).. We were just thrilled to experience something so neat.
All is going well here. our next appt is Tuesday. We will not be repeating the MIBG scan this week, its been rescheduled for next week the 19th and 20th. Our appt on Tuesday is just a blood draw and all that good stuff, and hopefully no platelet transfusions! I am a little concerned about not being in treatment though, the last couple of nights Kylie has been complaining of "cramps" under her right arm on her rib cage area (I will be discussing this with her dr.) Im probaly being paranoid, but at this point every little ache and pain she has scares me. Kylie did have spots on her ribs before the MIBG treatment in Philly and she did experience some kind of discomfort then.
I wonder what it must feel like for her sometimes. I truly have no idea what she is going through.Ive seen what she has endured but, seeing and feeling are two diffrent things. Then she comes in and just smiles and talks non stop and it seems to be not so bad.
Well, anyway all is ok here. We had a great weekend and everything is going well.. We are safe, we are sound and God keeps us cozy.
Tuesday, October 5, 2004 12:40 PM
Today was a drs appt. We are down to once a week, so thats progress! Today kylie needed platelets, at 29. This is also good considering she went a full week with no appointment and no bruising. She does however have a cold, but no fever so Im sure she'll be fine.
Next week we will be repeating the MIBG scan. The dr hopes it will come back positive so we can go back to Philly. Dont get us wrong, we do not wish cancer on this child, we do however want to continue treatment in a way the dr is sure works to some some degree. Our dr just wants to put us on the right treatment road and, at this point in time doesnt feel the antibody treatment is a good option for us. I see his point about exhausting all treatment options before moving on to another. We are able to do three MIBG treatments if needed, and this will only be our second. We do know she still has cancer in her body, and we are hoping its just enough to show up positive on this next scan. We want to go back to Philly and kick this things ass and be done with it already!
We had a very good weekend. We attended the haunted school house in Vermillion and had fun. Kylie has been doing well in school and yesterday went on a field trip to the planetarium. This weekend we are planning on going to see the Phantom Of The Opera. All is well and the good Lord continues to bless us!
Tuesday, September 28, 2004 7:15 PM
Yesterday was a drs appt and all went well. Kylie did need a platelet transfusion.
I did learn something yesterday. Platelets only live about a week or so, then the body just regenerates more. So, if in the body ,platelets only live a week,then once donated, they have a shorter life span of say 2 to 4 days. The normal platelet count is round about 150 to 400 thousand. On thursday the 23rd, Kylies count was at 25, we did not transfuse. Yesterday the count was 15 we did transfuse. However, its been a period of ten days since the last platelet transfusion, which says to me , yes we are dropping but we are dropping slowly and Kylie is holding her own. That is great news!
We had a wonderful weekend. This is gonna sound goofy but, we took a break. From life and just up and disapeared for the weekend. It wasnt anything special just,the three of us getting away from the clinic, the phone ,work and, just all that stuff life loves to throw at ya! We told no one except my dad for emergencys only. We didnt go far, we just went! First we attended the Indians game and had a great time! We had awesome seats close to home plate thanks to a wonderful angel who gave us the tickets.. L.C, you are truly a wonderful person and we are grateful to know you!
Dont forget to sign the guest book, even if you've signed it before. Kylie likes to read the notes people leave for her and I print them out for her scrapbook. thanks and GOD bless
All is well here! we are safe and sound. we are refreshed and blessed!!!!!
Friday, September 24, 2004 11:21 pm
Today was drs appt day. Kylies counts are doing ok. Her bone marrow is recovering on its own so, thats a good thing. Right now we are waiting on those pesky platelets to come up on thier own.. Today, they were at 25, the normal is 150 to 400. They mostly transfuse at 20 to 25 but, today we decided,(as in the drs decided) not to transfuse and put Kylies platelets to the test.. We are hoping that come Monday they will come up on thier own or at least hold steady. The drs are trying to determine if she is platelet transfusion dependent, which we are hoping she is not..
I dont like the fact that right now we are not recieving any treatment. I understand that we really cant because of those platelets, but Im praying something happens soon. Kylie is starting to show a slight limp again. Nothing real major, but that just goes to show the cancer is doing something and we need to treat soon. Im refusing to panic about this limp, because I know things are gonna be ok. Its not really a huge limp, you really have to watch her to see it. right now all I can do is just keep an eye on her and pray those platelets come up soon.. Its the worst feeling in the world to be helpless.
On a lighter note things are going very well. Kylies energy level has yet to falter. She is enjoying school, when she goes. She cant participate in gym because of the platelet thing but, thats ok. Yesterday a friend of ours did the most sweetest thing for Miss Kylie. She took Kylie to the Build A Bear, store in Strongsville. Kylie got to build her very own furry friend and loved it! Thankyou L.C.!
Tuesday, September 21, 2004 9:06 AM
Yesterday, we went to the clinic, and results were very pleasing. So pleasing in fact, I sent Kylie to school today.
We are done with shots now(YEAH!!). Her ANC count was 8.5 (the normal is 1.5 to 8.0)! So now, we just wait for her platelets(currently 50),to recover and we'll do something, meaning treatment, somewhere.
On Sunday we attended the gravity games in Cleveland and, had an excellent time. I just added a picture of Kylie and Kristen standing in front of a guitar in front of Rock and Roll hall of fame, on the way to the games, in the photo section.
Kylies talking about wanting a skate board..I told her , maybe next year! I love it, her atitude is just awesome! This child knows she really cant be doing anything like skateboarding, right now anyway, yet she wants to anyway. The funny part to me is, she has a slight fear of heights! So, my thought process is next year we shall attend the gravity games again and see what happens from there.
we are so rich in blessings, I thank GOD for that everyday!!!!!
Saturday, September 18, 2004 2:18 PM
we spent several hours at the clinic yesterday. Kylie received blood, platelets, procrit and nuepogen. We also received free tickets to the gravity games in Cleveland, which we will be attending on sunday. I am looking forward to this, as I am a bit of a skateboarding fan. we will be taking Kylies friend Kristen.
Today we are off to Medina to my Aunt Margie's house for a family get together and food. What a blessing it is to have a close family that has get togethers for no reason, but to get together and talk about the past week! I just saw my Aunt Margie a week ago. life is grand and we are truly looked after.
I would like a prayer sent out for my Uncle Bob(brother of my father Bill) who lives in Texas. He has cancer and starts chemo soon and it breaks my heart that I dont see him often because of the distance. so, from Ohio to Texas I love you Uncle Bob, take care of yourself!
Back to Miss Kylie, all is going well. She is doing GREAT! Full of energy, full of life and full of spirit. God love her! We have no dates yet on treatment in new york, or a real plan for that matter. Things have once again been changed, so when I know you'll know. God bless you all.
Wednesday, September 15, 2004 2:44 PM
Today was the first day in a very long time that we went to the clinic and still made it home by 2pm!
Kylie had her MIBG scan at 9am this morning and a heart echo at 10 am. After the heart echo we visited the clinic, to hopefully see if scan results were in,they were(YES!).
since this was just a preliminary report it couldnt be fully viewed ,so heres what we got out of it, for the most part: NO neuroblastma legions present... that means NO legions big enough to light up....A negative MIBG scan! This also means we are NOT eligble for MIBG therapy in Phillidelphia, they cant treat it, if they cant see it! We do, however, know that she does have spots. We also know there is cancer still lurking in her body....
It looks to us that we are most likely to pass Philly by and head straight to New York for a treatment known as antibodies, at Sloan Kettering Hospital. I cant say for sure, because I dont really know... Plans, treatments, thoughts, change so easily when dealing with any kind of illness. I have learned to simply accept this and bend when the wind blows.
We do know, we have a long road ahead of us. We do know, things WONT get any easier. We also know, that we dont have time to dwell on it. Whatever, happens,.... happens. We are OK,and we're gonna be OK! We have been very blessed.
Saturday, September 11, 2004 8:20 AM
Please take a moment today to pray for all the families that were affected by september 11, 2001.
Yesterday we had a drs appt. It went very well. She had her nuepogen through her IV again and she did receive platelets. Her blood is holding steady and her ANC count is really jumping... 3.11 ... I think I'm gonna send Miss Kylie to school on monday too(yeah)!
Our awesome nurse, Holly, will be calling CHOP to find out more about a second treatment date. Even if its just a guess date I can at least attempt to make some plans.
Our plans for next week include, the MIBG injection on Tuesday , MIBG scan on Wednesday and a heart echo sometime during the week. Oh and of course our regular appts for platelets and or blood. hopefully we wont need neither! All is well here.
Wednesday, September 8, 2004 8:26 PM
Today Kylie went back to school, (I went to curves)! She had a very good day. She came home very excited ,she loves her teacher and has already made some friends(no suprise there, shy, Kylie is not)! Kylie was also excited to tell James and I what she learned today. Next time you see her, ask her what glass is made from. She came home with homework and of course school bills (haha)... She needs lunch money, school fees ,and book order money, oh yeah, and she selling stuff too. I'm not complaining, this is what its about. I'm so proud of her!
Tuesday, September 7, 2004 5:13 PM
Today was an excellent day!!! Kylies counts came back great today, so great I'm sending her to school tommrow. She still can't participate in gym because her platelets are stil on the low side. Thats ok, we wont complain. She has to be a kid sometime, and kids go to school (praise GOD).Well any way, on Friday her white blood count was 1.50 today it was 3.10 , thats a decent jump. We are very hopeful that her counts will continue to recover,so we wont have to have a stem cell rescue. We dont want a stem cell rescue , because if we have one then she will be ineligble for future MIBG treatments, and right now it seems that she really needs this second treatment.
Her bone scan results are in and to tell the truth, can be disregarded. Let me tell you why,they compared this bone scan just taken on friday, to one that was taken 6 months ago, before she relapsed ,so of course the results dont sound good. I can tell you, from talking to the doctors, the treatment she received at CHOP is doing its job and everything is shrinking, but its still there. A second treatment is most likely to happen, the question is,when?.
Friday, September 3, 2004 1:15 PM
Today is going much smoother and I feel way better than I did the other day. I'm sitting in the clinic as I type. We've been here since 10AM this morning. We came in had Kylies port acsessed, went down to radiation for her pre- bone scan injection(we did get that at least) and came back up to the clinic and recieved nuepogen via IV and platelets as I type. We'll get done with those, here shortly, head down stairs and get our bone scan and be back up to receive blood... busy busy busy! All in all today is going well and Ive had time to calm down and count my blessings.... Her head CT came back and any/all spots have shrunken a great deal in size! It looks like most likely we will be returning to CHOP, for a second treatment. Our Dr is not concerned with new spot found on kidney, he will be following up, but does not believe it to be neuroblastoma(thats really good news!) Her MIBG scan has been rescheduled for the 14TH as the soonest opening. So far so good.. even though counts have dropped spirits (and energy) still up!!!!
Tuesday, August 31, 2004 10:39 PM
Yesterday Kylie had a CT scan and the report came back,after being compared to previous scans they found a new spot on her left kidney,that they werent sure about. They didnt find any evidence of the old spots(I guess,at least thats what I understood,).I dont really know what that spot is as of yet, but lets just say we are most likely not in remission YET! After the CT scan Kylie received platelets as her platelet count was 4, as in 4000, the normal being 150 to 400 thousand.
Then, today we head into Cleveland for the MIBG injection for the MIBG scan on Wednesday, which is the one scan that will tell us for sure what that spot is, since the MIBG scan lights up neuroblastoma cells. Only to discover, after they kept us waiting for over an hour, that the special radioactive dye used for this scan wasnt shipped and they cant get it shipped for another 2 weeks.That was after someone came out into the waiting room and told us that the dye would be in soon!! Im not 100% sure what happened there, but I know this scan has been on the schedule for the last 2 weeks. Disapointed is not really the word I want to use right now ,but it will have to do! Meanwhile Kylies blood dropped down from 9.3 to 8.9 in one day. Today it was to late to get blood, so on Thursday our next appt, Kylie will most likely receive, platelets, blood, procrit and neupagen in one fun filled day.
The bone scan is still scheduled for Friday. The MIBG scan has been moved to September 14th, Which honestly really SUCKS, but what can you do. The doctors in Phillidelphia are awaiting all the test results to let us know about a possible second MIBG treatment and now because of this incedent(I'll be nice) we'll be two weeks behind schedule.
This entry in the journal today, is very sugar coated, since Ive had time to vent my frustrations to my good friend. THANKS Cheryl!! I love ya
Sunday, August 29, 2004 6:25 PM
The weekend is almost over and on monday we begin our week long drs appts.
I'm very proud to annouce, our church has just purchased our first building! we found out Thursday night at our town meeting, we are very excited and will hopefully get in soon and start remodling and making it our new home of worship.
On Friday we didnt do to much, we just kinda hung out. Kylie got to go with some friends of ours to a kiddie park in brooklyn, I went to curves.
On Saturday however, we went out and about school shopping for miss Kylie. she got a couple of skirts, a new blouse and 2 new pairs of shoes. We actually went blindly as I didnt get time to pick her up a list of supplies, so I winged it and if she needs anything else I'll just get it later. For dinner we ate at Red Lobster, Kylie has recently declared she likes lobster and crab legs..(Good Girl!!)
Today we got up early and headed over to pick up our nephew, Kylie's cousin, Micheal and headed out to the Indians game at Jacobs Field in Cleveland. My 14 year old nephew, who is about 3 inches taller than me,(then again I do believe everyone is taller than me, I also have an 18 year old nephew in Indiana who is a good foot taller than me.haha.) Anyway, the game didnt get rained out, so that was good. Kylie danced around with radio Disney,who were there broadcasting, and then we went to meet the players. Kylie along with some other kids from the Cleveland Clinic were chosen to go out on the field before game time, for kids funday. Kylie was called out in the catcher position as kyle dupont,(yep they called her kyle..UGH, oh well!) She got to meet the umpires and Victor Martinez. She also received a hat, shirt and an autographed ball. She has now declared herself an Indians fan and wants to watch more games, "as long as they win".... The Indians were winning when we left in the 7th inning, 6 to 0. We left early so James could get home and get a nap, because tonight he starts back up on third shift. So that was our weekend , pretty nice and pretty quiet. we are blessed.
Thursday, August 26, 2004 6:30 pm
Its a great day to be alive
Today was another good day! Im so grateful to be Kylies mom. I hope someday she understands all I've tried to teach her and how she has taught me so much more.
Today we went again to the clinic with Miss Kristen and needed nothing (yep I said nothing)! Her platelets were low but holding steady at 45, her blood seems to be coming up, at 9.5(10.5 and up is considered normal). She is however still netrapenic but doing great. We still spent the day there,playing,( some ppl go to the park we go to the clinic..haha!) We received her procrit and neupagen through IV, to save her a shot.
Next week is scan time! our week will go as follows: Monday: cat scan
Tuesday: MIBG injection
Wednesday: MIBG scan and on Friday, the full body bone scan. I am a bit nervous but whatever happens, happens. We will either be done with treatments or continue on with treatments, whatever we have to do we will do it!
So everyone knows, yesterday I mailed a check to Alexs lemonade stand fund. God bless the Scott family for continuing on with Alexs lemonade stands.
A special note to Kevin from Kylie and I quote: "Please sign my guest book and thankyou for being my friend and Im gonna miss you and if you ever come home I would like you to stop over my house and meet my cats, george and little Bear and maybe you can go over and meet my grammas dogs she has 4 of them..." I had to stop her there, she was going on and on and on and to be honest and cant type that fast. well anyway from the Houtchings family to you, good luck have fun,keep in touch and be good!.
Monday, August 23, 2004 5:05 PM
Today was interesting! It all started last night around 11 pm. Kristen was spending the night so she could go to the clinic today. Kylie and Kristen were brushing thier teeth for bed. I just crawled into bed when Kristen comes to tell me that Kylies' mouth is bleeding, With her platelets being 33 on Thursday, I became concerned and we called the Cleveland Clinic.. She wasnt gushing blood or anything but the bleeding was steady, and the dr decided that he didnt want her mouth bleeding all night long, we should come in to the emergency room and get some platelets so we dropped Kristen off at home and were on our way(its about an hour drive). we got home around 9 am this morning.
We are truly blessed! I was thinking, while sitting in the hospital watching reruns of Mamas Family on tv. Kylies record is good , we've been battling cancer for almost 3 years and this was our first trip into the emrgency room.
Since being dignosed in November of 2002, she has only been admitted into the hospital twice for neutrapenic fevers, once for a bladder infection and once for a reaction to acutane, called hyper-calcimia. So a total of 4 unplanned hospital stays, and a trip to the emergency room, in a 3 year period, is really pretty good. God stands right next to Kylie..
Saturday, August 21, 2004 10:36 PM
Well today was the big day, Kylie hosted her very own Alexs lemonade stand. It was so cool, we had a very good turnout, kylie got to meet her teacher for the upcoming year,and the superintendant of the school stopped by. God bless everyone who helped and all who came... Now for what everyone has been waiting for... today, miss kylie raised $901.33, to go toward pediatric cancer research!! God is great! we also had a raffle and that went very well, Thanks cheryl!
Afterwards we went to uncle Bills and and Aunt Pams and had a wonderful family get together. We played kickball, ate hotdogs and just had a good family time. we are truly blessed!
On Monday we be heading into Cleveland, for our next clinic appt and yep Kristen will be going with us again,(which is a really cool thing). On Monday we will do our routine blood count checks. Next week we have all our scans repeated, so keep your fingers crossed and lips praying! These upcoming scans will determine what happens next.. if we do more treatments or hopefully we go into remission and stay there...
Friday, August 19, 2004 11:00PM
today is my husband James' birthday, at least for another hour anyway, he is 27. Happy birthday
we went to the dr and we received blood, as her blood count or what ever you wanna call it, was at 7.6. No platelets this time they were only 33. I know I just said the word, only, in that sentence but, hey they coulve been alot worse. She is that word I cant spell, neutrapenic.
we now have a new clinic buddy, that wants to go clinic with us every appt. Kristen likes going, she informed me after church she will be spending the night on sunday and going to clinic on monday with us.. I love that kid, shes been a good friend to Kylie. Also, today Kylie got a big stuffed Angelica (from the cartoon rugrats), from her friend Kevin. Kevin is heading off to college soon and we wish him all the best!
we are putting the finishing touches on kylies lemonade stand and raffle.. Kylie will have to wear a mask, but its a cool fasion statement, maybe we can find her a yellow one, and we'll all wear masks... James is actually planning another one for next year! I think thats awesome. Ya know, I think we'll do a stand everyear until theres a cure!! Cheryl, is doing a real good job of getting the raffle part put together, this is gonna be fun.... Saturday, August 21st 11-3 at Liberty Ford(on rt. 6 across from drugmart) in Vermillion,Ohio. Join us and help fight pediatric cancer "one cup a time"
All is well, kylies energy level was actually good before the blood transfusion, now..... Well, I just wish they wouldnt run her blood through starbucks first..
love to all amanda jo
Tuesday, August 17, 2004 7:15AM
Hello All,
Yesterday,drs appt again....We took Kylies friend Kristen with us, since Kristen spent the night and her and Kylie stayed up till 2 in the morning, I thought why not take 2 tired, cranky kids to the hospital...lol Both Kristen and Kylie behaved wonderfully. Kristen watched the nurse access Kylies mediport, and made a wincing face. they had a good time ,they played soccer, got some gifts,played on the gamecube, playstation 2 and did art with the art lady.
Kylie was examined by a very awesome nurse, Holly. Kylie just loves her and Holly is just an awesome person, she always makes sure that Kylie is on her schedule..lol.
Upon getting her blood work back and checking her counts we discovered Kylie did indeed need platelets, as her count number was 6.... yes,I said six! the normal is between 150 and 400, so we got platelets...Her blood count had dropped from 9.5 last thursday to 8.2. They transfuse at 8 but, yesterday they said they didnt want to expose her to new blood,if they didnt have to. They asked us to take the procrit and wait till thursday ,hopefully it helps, if not we get blood. kylie received her procrit(aka epogen) through her mediport.
We arrived home around 5 pm(were at the hospital since 10am) to discover our wonderful friends Cheryl, Bob, Chrissy,and Ron made tacos for everyone, what a nice suprise! (they were super good me and james munched on em before we went to bed,) THANKS guys!..James' mom and dad Russell also stopped in for a visit, another nice suprise!Grandma Russell looked good , she recently had her foot operated on and she was doing well, up walking, very slowly but she was working it(as I'm sure it still causes her pain).... We are truly blessed!!
I know this site is for Kylie but, my mom (Grandma Branch) just had knee surgury a couple weeks ago, so please send some prayers her way for a strong recovery.. thankyou....
THANKS EVERYONE
P.S thankyou for signing the guestbook on this site, I will be printing the entries out and putting them in her box of "cards of love" she made... Dont get nervous if you look and all the entries are gone because they will never be forgotten...
Sunday, August 15, 2004 4:17 PM CDT
Hello all,
Today was a good day, we just got back from fishing with my dad and his friend Linda.. We went out on Wellington's resovoir in Lindas boat. Since Kylie is neutrapenic she wasnt aloud to bait her own hooks or to take fish off the hooks,she was a little dissapointed, she loves to put worms and minnows on the hooks. She didnt catch anything for the first hour or so, but let me tell you a story.... Me, dad, James and Linda were all bringing in decent sized blue gill, and kylie reels her line in and says "fish ate my hook and broke it off!" ,She was upset, so james put a new hook and worm on and we were all joking syaing it just wasnt on there right. Kylie goes up to the front of the boat and practicly pushes papa off the boat, saying shes gonna get that fish that bit her hook off and we are all laughing, sure go ahead kylie, good luck!!..lol ,well 10 minutes,later shes all excited, she got a fish and its a "biggen"! she fights and reels it in, we couldnt believe our eyes, it was a huge, (im not kidding it was a good pan and half) blue gill and hanging out of its mouth was a broken line and swallowed hook.. she did catch that same fish it had to be!! James took out her hook and was gonna get the second hook out, but the fish swallowed it down.. we were laughing, that was so awesome, not only was that her first fish of the day, but it was the same fish that broke her line..amazing! I'll tell ya though, when Kylie gets it in her head shes gonna do something, (believe me you) she does!!! praise GOD!! James caught some decent ones and little, tiny ones, that Linda and I, made fun of him for, until, we reeled in two small ones that together, still didnt weigh as much as one of James'little ones.. What a fun day! got home just before it started raining to..
kylie has been on her shots now for 4 days. She is bruising real bad at the shot sites , so my guess is tommorow she will need platelets again, they were up to 45 thousand on thursday. We'll see.
right now kylie is working on her lemonade signs and banners. We did put up some flyers yesterday. Next weekend, the 21st, is her event so, hope to see everyone there!
Friday, August 13, 2004 8:51 AM CDT
oh, its friday the 13th how interesting..
well,we went to the dr yesterday and bingo we hit neutrapenic! Her ANC count was( DRUM ROLL PLEASE) 0.09!
The normal is, 1.5 to 8.0. So we are held up in the home for a while watching for fevers,nausea, chills etc. etc. I mean we'll go places (maybe) but, no crowded places and not with out a mask!!!
We go back to Cleveland on Monday to start Epogen (AKA, Procrit) which is to help her hemoglobin, which was at 9.5, they transfuse blood at 8.0 or less. She started her shots yesterday at 7:30 pm, we will probaly do those indefinatly for a while.
we are hoping her counts will be up enough for her upcoming lemonade stand, so we'll pray! for those of you that are unfamiliar with alex and the stands that she started please visit www.alexslemonade.com Her family is keeping the site open. other than that all is going well, kylie isnt tired and her spirits are still up!!
I would like to say something to people out in the world who are not going through anything like this but are friends with or even just know some one who is.....and just dont know what to say or do...
You dont have to say a thing, just be there.
you dont have to do anything, just be there
you dont have to ask any questions if you dont feel comfortable, just be there.
you dont have to cry for us, we do plenty of that on our own time
you dont have to feel liking walking on eggshells around us
you dont have to, not be afraid
you dont have to feel sorry for us or our children
you dont have to act strong
you dont have to act any special way, just be who you are and be there.
you dont have to do any research or go to any dr appts, unless of course you want to
YOU DONT HAVE TO UNDERSTAND, BECAUSE WE SURE DONT!
just please be there and keep being who you are
to our friends, Thankyou for being our friends and just being there for us, we love you... may god bless.
Wednesday, August 11, 2004 11:39 AM CDT
Today I joined curves, that felt great I need a good workout for my body and mind..
It's a blustery day today, yet kylie is outside.. Tommorow we have yet another dr appt. She should be starting her neupogen(spelling?? lol) shots soon. These are a series of shots we give her in her legs every night for usualy 10 days or so, its supposed to help her neurophill count. Her dr told us when her ANC count gets to 7500, we'll start the shots, so we'll see....
Her dad and I hate giving her shots, but they do seem to help.. Now when her blood and stuff starts dropping, she is able to get an injection of procrit through her port and that does help. Poor kid, shes always getting poked and prodded but she is a real trooper and doesnt complain, to much that is, lol.
keep the prayers coming and God bless you all.
Tuesday, August 10, 2004 10:46 PM CDT
Hello all,
Yesterday went to yet another drs appt, and all is well ,Kylie did need platelets, boy we hit that one right. Her platelet count was at 16! Remember they transfuse at 20, Anyway all her other counts were lower but not to significant. we had a good,long day. We didnt do much after ward, some friends of ours bought some land and so we went out and checked it out and kylie gathered rocks, other than that it was a peaceful night at home. Kylie and I had an interesting discussion about her pills, she thinks they should come up with her pills, in one pill form, I told her that would be impossible because she takes diffrent kinds with diffrent dosages , she said she meant,just a pill you take once and your cancer is gone.. Dont I wish!! Maybe shes right, drs and scientists are making it to difficult maybe if they didnt think so hard and just looked at what was in front of them it would be like, lightbulb! it was right in front of our noses, we found the cure!!!! well that would be nice anyway, but wishful thinking on my part.
We've been preparing for our Alexs lemonade stand we just got flyers, so tommorow we'll be hanging those around town. If you didnt know, while kylie was in Phillidelphia, this past July she got to see little Alex and her lemonade stands in action,so we decided to do one ourselves.Alex was a beautiful little girl dignosed with neuroblastoma in infancy and at the age of four decided she wanted to help so she started lemonade stands, and they took off nationally and raised thousands of dollars for pediatric cancer research. We didnt actually get to meet this wonderful little girl but we(kylie and I)felt touched by her. Sadly little Alex passed away in August of this year, she was 8 years old. we are holding this stand on August 21, 2004 at Liberty Ford in Vermillion,Ohio in Alexs honor and memory. So please join us and help fight pediatric research, "one cup at a time".....
Well anyway all is well on the home front here. Kylie is doing great running, playing and well, just being a kid! praise GOD!! we ask that you keep any and all prayers coming, they work!!!! may God bless you
Thursday, August 5, 2004 7:39 PM CDT
Today is August 5, 2004 and all is going well. today we had a dr.s appt and her platelets have dropped from 106 on monday to 50 thousand, the normal is 150 to 400 thousand, they will transfuse more platelets at 20. Her blood and all that is ok for now. Her ANC count(that determines if we have to stay away from everyone, watch for fevers and Kylie has to wear a mask, AKA neutrepenic) was maybe a couple of points from being neutrepeanic (i have no ideal how to spell that one.lol) anyway Kylies at 2.71 and the normal is 1.5-8.0 , this is the medical part and she seems to be dropping, in numbers anyway.. Kylie is still ornery and rambunctious as ever! so Im glad to say spirits are up and climbing!!
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