History

Journal History

Thursday, April 15, 2010 10:06 PM CDT

Well since I last updated things are getting shaken up and I am not happy with them. First my best friend passed April 10th. I was up in MI to see her before she passed but she was in a coma so I don't know if she knew I was there. I'd like to think so but one never knows. She'd been in that coma for over 2 weeks by then. I miss her a lot.

Then on top of all the issues with AShley her new pdoc decides as all of them we've seen since residential that she is on to many meds. Well he is making adjustments to her meds to "streamline" them and it's not going so well. He has changed her Tenex to Intuniv which is the ER version so she only takes it in the morning and not 3x's a day which is fine. She seems okay on this. Then the other day he decides that seroquel is going away and that risperdal will take over the whole job. So inside of two days seroquel has gone out the window and destabalized Ashley further. So the list now is lithium, intuniv, risperdal, concerta. Since the intuniv is working well I asked to discontinue the concerta because it's a simulant and it might be causing issues. He said no we might raise it. So that was not pleasing at all. Wednesday night Ashley came unglued and was manic and hitting, kicking, throwing and punching not just me but Jim as well. I had to restrain her three tiems on the floor. She was also in trouble at school. Today she was manic to an extent, very over active today and it's not pleasent because she will not listen at all.

I am also working on getting involved with advocating as well. I am tired of seeing those with physical illness getting treated so differently than those of us with mental illness. I am tired of being dismissed and when times are tough we don't get called or checked on per se we are ignored. To put that better, people run. I am viewed as a bad mom who can't control her kid. Whether the public wants to believe it or not we who suffer with mental illness or raise a child with it need the same care and understanding as those with physical illness.

I am fet up with being alone, I am fet up with having to deal with everything alone. I am tired of being walked away from even more. People would be horrified if a cancer patient or someone with any other life threatening illness was walked away from people would be horrified. To bad they are not horrified when we with MI are walked away from and left to do fight the battle alone.

This is a sad sad world in more ways than one. Discrimination is far from gone. I am only one person and one person can't change the world but if I have my way I will make a difference in how people with MI are treated. The things people say and do only show their ignorance and they don't even realize it. I want my life back, I want friends, church, and some resemblance of normal and to be accepted not ostricized. This world of MI is very painful that is for sure.

Now that I am done, I will update in a few days.

Julie n Ashley

Sunday, March 28, 2010 3:14 PM CDT

Well it's been a couple of months since I have done any updating at all. Things have been very rough here and I've just not had the desire to update or do much of anything but cope.

Ashley had her AS doubled to try to stop her from hearing voices. She has continued to be violent with throwing things, hitting, biting me, and destroying things. What is really getting me at this point is that no one cares if I am the one getting this crap. If I were doing this stuff to her, she'd be taken from me. But since it's me getting basically beat up by her, no one cares. All I hear is "keep your chin up" "hang in there" and I am tired of hearing it, how about helping me???? I can't really call the police because of the number of times that things happen we'd wind up with DCS on our butts and that is not my goal. My goal is to make this stop. I want some resemblence of normal. I want someone who is willing to help me when things get like this and stop anyone from getting hurt. On a totally different note, as I sit here typing my LOUD FREAKIN NEIGHTBORS are driving me INSANE as well. IF the don't SHUT UP I am going over there and beating their door. Sorry, they have no respect for anyone else in this building. Anyway back to Ash, she has also had two meds added to her mix, one is risperdal, she's been on this before but now it's used to stop her aggressive behavior. She is also on Clonidine of which is to help sleep. Well it seems we have already in two weeks time out grown the tired effects of both of these. She is not going to sleep, she is calling constantly to me to find out where I am, what I am doing. We are also dealing with bet wetting as well. So she has to have pull ups from home medical service. Another side note, I think I have damaged my hands LOL, I have no desire to hear everything my LOUD FREAKIN neightbor say or do so I pounded numerous times on the wall. OUCH!!

As of the past few days it seems that depression has set in on Ashley and she is very clingy. She would not leave my side yesterday at all not even to sit in the living room without me. She has nothing to do, won't play, just lays on the couch. She had to sleep with me last night she was just about in tears talking to me. Maybe the depression or maybe the visual hallucinations that have started with bugs flying around her room, I honestly don't know.

I am at the end of my rope. I am ready to give up. I know that a lot of people who deal with this are isolated like I am because of what goes on and people not understanding but it's not right. We need people around, friends and we don't have much.

Friday was an awful day for us here. Ashley refused to go to school and was up to her normal stuff. She threw things at me, she physically jumped me several times, and when she tried to get the dog leash we both went for it at the same time which did not go well at all. Knowing what was going to be done with it I was not about to let her get it and get hit with it.

Well that is about it for now. I need to take a pill, I am very aggrevated right now and an Ativan would do me well or my neightbors won't be happy when I show up at their door. Management better do something about this!!!

Julie n Ashley

Wednesday, January 20, 2010 1:39 PM CST

Well, yesterday was a disaster. Ashley was nuts in the morning and was trying to hang from her ceiling fan in her room and acting goofy. I decided that this time I was going to video this so that I'd have something for Youth Villages and since that apparantly pissed her off, she broke my cam. So I started with my phone and she physically challenged me for that as well and I had to fend her off. She did not get to school until 11am.

Today was awful again which started with her being up at 3am this morning and never going back to bed. As the time grew near for her to be getting ready for school and such I told her she needed to pick up the crayons she had on my rug in the living room. Off she went, I asked two times then gave her to the count of five or I was throwing the crayons out. She tore the arm off my recliner so I sent her to her room of which she locked herself in there. The lock is on the outside of the door. She destroyed her room with things all over the floor, her plastic drawers pulled out and emptied, flipped her toybox etc. I had to go back in one time to rescue her lava lamp from certain destruction. I went back in a second time and found her hanging out her window. I made her close the window and not long after that YV showed up. She hollered in her room, she threw things, said that I had locked her in there which was not true, she locked it then closed the door. I unlocked it three different times. Then when she finally came out she has had a small scrape on the back of her hand and she said that I flipped her toybox over and hurt her hand and now she had proof. What she does not realize is that a doctor would be able to tell that scratch was atleast 2 days old if not older even if she picked it open.

I am ready to come unglued here. I wish, wish, wish we had people other than YV that could come because right now I am on my own for the next two days. Supposedly Monday Cameron will be back here again. Things are excalating here and there is no one close that is willing to help us. Really sucks!!! I suppose there's one but people do have to work and no everyone can just take off or be late for work and not get fired for it. Things are desprete here and if things do go wrong I don't know what will happen. I can't handle watching my things get torn up, I can't replace them. THIS PLAIN SUCKS!!!!!!

I did however out of frustration break a bunch of Ashley's crayons and she does not know it yet. I also went to her room and took every stuffed animal that means anything to her and put them away. She won't have them back until she behaves. I am sick and tired of this shit.

Later

Sunday, January 17, 2010 4:18 PM CST

I was hoping to update sooner but yesterday was not a good day for me. I have trouble swallowing things sometimes and a capsule I take got stuck and was there for the whole day. So each time I ate I had to lie down and try to sleep so that I would not puke. Today it's gone and I am being very careful not to get something else stuck.

Friday was a huge disaster for us. There was a huge blow out friday morning revolving around school. I was hit at least a half dozen times by Ashley with her shoes and once by her alone. She was manic and defiant big time and in the end refused to take her meds. I tried to make her leave for school by taking her arm and leading her to the door and she fell to the floor and told me to drag her on her chin. She repeatedly said I pushed her down and threw herself on the floor. When we finally did make it out the door it was with meds in a baggie for the school to administer and her refusing to get in the car running the parking lot. When I got her to school she was confronted by the resource officer in the office. I showed her the pills told her Ashley refused to take them and she came down on her and made her take them right in front of her. Go Officer Gear!!!! I had to go to my room for a bit and cool off or I was very close to doing something I would have regretted.

We did get our services back through Youth Villages. We went Friday night and signed the consent and they have to provide services even though they won't get paid until insurance approves. I am very happy about that because something will eventually go wrong here and there is no one to call to get help from to stop that from happening except Youth Villages. That is sad because there are people here that have flexibility and could be here if needed. For anyone who reads there is a documentary coming on HBO East and West on the 21st, Thursday I believe. It is called Diagnosed Bipolar I believe and it is about five families who go through this as well. It was taped over a years span showing every aspect of what the parents go through and how isolating this is. It cuts you off from the world.

Other than my incident with the pill our weekend has been relatively uneventfull and probably will stay that way until school resumes Tuesday. I have one more day to get through til school is back and my days are mine. Then it's back to work on finding a new place to live and the electric bill.

Update later

Julie n Ashley

Thursday, January 14, 2010 11:23 PM CST

Well I have had a very upsetting day. I got a call today saying that we have been dropped from our only support, Youth Villages. Our counselor has not been coming like she should, one time in 3 weeks now and due to that we have been dropped. I came unglued when I found out that Ashley and I have to suffer the consequences of her actions or lack there of. They are getting us set up again for service and were supposed to have turned in paperwork to the insurance company today.

The kicker, I was very upset, crying, angry, so I called the insurance company to let them know what happened, why it happened, and to have them approve it ASAP when the paperwork came through to them. The lady I spoke to was a blessing. She went to the person who would be doing this directly, let her know, will be flagging the paperwork when it arrives for approval fast. Not only that but she was also pissed and she is, on my behalf, turning in paperwork on Youth Villages for Abandonment of services on us. There is something else she was turning in too related to this. I am so grateful that they care and hoping to have services back early next week.

Ashley has been late for school as normal. Yesterday she threatened to hit me, today she was very slow, tried to hijack things to school that she was not allowed by telling me she wanted to change back packs. Well I knew to check it and each time I moved to take it and check it she backed off and shreeked. So after several times of trying I finally physically forcefully took it from her. Sure enough she had items in there that I had to remove and once that was done, she had no desire to change back packs anymore, go figure. Mom is not stupid although many would think so.

So now we wait and continue to deal with this on our own and honestly, without support I am not doing so well at it. Knowing that now, I have no one to call for help really bothers me. I have no one who cares enough to show up here if we needed it and we do. I hate it but that is the way it is. It's been admitted by more than me if we don't have intervention then someone is going to get hurt when Ashley gets going. It kills me that there are plenty who know locally and no one will step up to the plate and help us. Right now not many know that we have been cancelled but word is getting out. I am very upset still and won't be happy til our services are restored to normal.

Well that is all for now. Need to try to go to bed soon so I can get up in the morning. I'll update with more information soon.

Julie n Ashley

Wednesday, January 13, 2010 10:09 AM CST

Another wonderful morning. I got up this morning and found Ashley in the chair in the living room sleeping. Turns out she peed her bed last night. Then she refused to get moving again. She kept trying to cover up and I kept taking the covers away in hopes she'd get up and get clothes on to be warm. So then she went to her room and got her big stuffed dog and used him. She threatened to hit me if I tried to take from her so I stayed away. But, that dog will be gone when she gets home tonight and so will woofy. She's lost TV, Computer, and Wii for the day. So she will be incredibly bored tonight. Oh well that is the price she pays for acting like this. I did not get her to school til 9am.

Well that is all for now. I have things to get done like go get that script of vitamin D that is still waiting for me. Did not know I'd have to pay 30 for it and did not have the money. Now that child support showed up I do.

Later.

Tuesday, January 12, 2010 11:41 PM CST

Well things sure are just crappy. Ashley is arguing like crazy, that is all she ever does. Then this morning, I get up late because I had the alarm set wrong. Ashley happened to wake at the same time I did so I told her she needed to hurry and get ready for school. I am willing to be anyone following this can guess how that went over, yes like a lead brick. She was running around nude then went to her room and got in bed. So I went in and got after her then returned to my seat in the kitchen. Then I hear her in there saying that I am trying to kill her while she ties her legs together with her belt, still nude. She continues to say that I am trying to kill her and then hops out to the kitchen to use the phone to call 911 because I am trying to kill her. I thought there was going to be a physical battle over the phone but she never attempted it. She did not make it to school til 11am and I told the principal what she'd been saying because Ash was going to tell Officer Gear who is at the school I was trying to kill her. That would go over really well.

So that aside the arguing is making me crazy. It's constant over everything including her meds. She gets mad and refuses to take them, even if she asks or reminds me she will turn and refuse. I don't get her at all and there is a part of me that wants her back in GA. She also left the house this past weekend when there was snow on the ground. She did not run but she was outside alone to collect snow balls for the freezer.

Youth Villages is such a help to us, when they are here, which has not been much lately. But they want to get me involved in the same wrap around program we were in last year I think. The same one that dumped us because they had no clue what to do with us. YV just does not understand that I have been down every road possible already. They want me to have support, people to call, people that will come if needed, not going to happen. They are spinning their wheels. I would love to have the kind of support they are looking for but I am realistic, it's not going to happen. We've been walked away from by people and agencies and I have a big distrust for people.

I still have not called to change my meds. I don't acomplish much during the day. Today it was making one phone call. I did get to bed by 2am though last night so that is better than 4am. I need to start acomplish more it's so awful to sit in this house day after day alone, the phone never rings, except bill collectors, I hate it. I am seeing every episode of the Golden Girls that ever existed, way to much George Lopez, and Family Matters.

Oh well, none of this really matters anyway, nothing I can change. Cheers just came on, I hate that show so it's time to change to Craig Ferguson.

Later.

Sunday, January 10, 2010 10:55 PM CST

Well, another school week came and went and yes she was late on day one. Not but to much but late none the less. Then of course due to the none existant snow we had school was closed for 2 days. Torture for me. We only had one YV visit this week so that is one visit on 2 weeks and it's not good.

Any way, if I can just keep it together we will be in shape. My meds are not doing well because they knock me for a loop and I sleep way to much. But if I don't take it then I don't sleep so kinda in a bind on that one. I think the effects on my mood and such are good if I could only take it. There are several things bothering me and I feel helpless to fix them. Ashley asked about church for this morning and I told her no. She asked if we were done with church and I told her yes when deep in side I am yearning for it. Just not a new church, I don't want to go through that again. I HATE new, I want comfortable. I just don't feel like we fit in anywhere or that I have anything of value to share when this is my life and that is all. I don't like the feeling of people distancing themselves for fear they might get involved when they don't know what to say. I just want things the way they were, no trouble just gaining knowledge and peach from church. I am so low I am not sure which way is up and prayers with me would be nice but not going to happen. I am on my own. I hate this world so much. If there were no stigma about mental illness we would not have half the problems we do.

Found out something else, first of all I am not verbal at all. I can write you a book but not really talk. Not understood by anyone really or accepted, there's something wrong with me I guess. But Ashley is not verbal either but with what has been going on at school I found out she will write like me. I had emailed the principal to discuss things and told him to forget Ashley being verbal, it was not giong to happen and he would have to listen to me, her doctor, and Youth Villages. Well then it hit me, have Ash send him an email. It worked, I caught her in a talkative mood and she typed a heartbreaking email saying what was wrong and to please help her she could not take anymore. He wrote back and thanked her and said that if she did not want to talk she could write him a letter, now there is some understanding, if I only had that.

I also went to the doctor myself and had bloodwork done. I have had muscle and joint pain for a long time and we were looking to find out why. I had 7 viles of blood drawn, was not sure I was going to get out of there with blood left. Anyway all came back good except one that I never thought. I am very low on Vitamin D which can cause problems. So tomorrow I get to get my script for Vitamin D at 10,000mgs per day for 30 days. I will get retested at that time and probably have to go another round of 30 days. Will also probably be referred to a specialist as well, my left arm is killing me. The muscle and the elbow are so sore I can hardly use it except to type and light things.

Well that is about all for now. Tomorrow is another school day so we shall see what happens. Right now I am just hoping I can go to bed early and not be wide awake until 4am again. I am really hating that. Really turning into a bitter person actually.

I will update again in a few days.

Julie n Ashley

Monday, January 4, 2010 11:40 PM CST

Well, today has to be just about the best day we've had all break. She was not arguing at every turn and was actually quite pleasant today.

But....we have the big SCHOOL lurking around the corner in the morning!!! How will it go? Will she get up? Will there be a huge fit? I guess I will find out at 6:30am. I sure hope not. I have a doc appt and I will be very upset if I miss it. I've not been able to go to the doctor and tell what is wrong and allow what ever needs to be done, done. It's always how much will this cost, nope can't do it, can't pay. So this time is with insurance and I know there will be no bills so he can run any test to find out what is wrong with me he wants!!!!

I'll update again tomorrow and tell how she does for school. And I won't forget my doctor visit with Dr. Fite. So excited about that!!!

Julie n Ashley

Sunday, January 3, 2010 11:04 PM CST

Things are up and down here. Ashley is okay one minute and off the wall the next. Her attitude sucks to say the least and to be polite. She takes everything literally which irritates the crap out of me. Example, I was playing Wii and doing a bike ride around an island. You have to get flags at checkpoints and somewhere along the way you pick up a dog. This little dog follows you through the race. Well I went off a cliff while riding and hence the dog followed and was gone. Well Ashley got all bent out of shape because I will killing dogs and I was going to kill ours. She protected him trying to keep him away from me because I was going to kill him. She was after this the whole time I was doing the game with all kinds of comments that made no sense at all about me killing.

I try not to complain to much, just say what is going on here but I have to do it anyway. I wish so much that this was understood so that people would come around. I miss having support, friends, people that call to find out if your okay, people to talk to etc. This is like being in total isolation and it's taking a toll on me. We don't fit in anywhere not even at church and I hate feeling awkward. I hate seeing people distance themselves for fear they might accidentally get involved and it makes me so mad I could spit nails. This is hell and so lonely it's awful. But I have no choice but to deal with it. It's not like I can change how people feel or their desire to understand. We miss a lot of things but they are things I can't change.

The one thing I try to remember is that if we all were required to walk in eachothers shoes for an extended time, this world would be a much more compasionate and understanding place. Maybe someday.

That is about it for now. Going to go release some stress on the Wii and try to go to sleep before 3am so I can get up in the morning.

Julie n Ashley

Friday, January 1, 2010 2:29 PM CST

Hello!

Happy New Year to everyone and I hope all had a good Xmas. We did have a fairly good Xmas up north. Ashley was good but had a few incidences that did not go well. Ashley cleaned up again getting a lot of stuff. I got a Wii from my dad that came with the Wii Sports. I purchased with Xmas money the Wii Fit Plus and that has been fun as well.

Excluding Xmas things have been crap here. Ashley is not doing well especially when it comes to school. Our morning as not good or more like hell. She was truant before the holidays but it starts over after the holidays. I have no doubt she will have me in court from being truant.

She is throwing awful fits, throwing things at me, spitting at me, and more. Our counselor comes here and helps to try to keep her under control and reminds her that her violence will get her removed from the home if she does not stop. We are getting alarms for the door and windows so Ashley can't leave and run. She ran from school one day about 4 weeks ago or so. She stole my phone and took it to school and I was lucky to get it back. She just got done having issues over eating a muffin that she asked for. Last night we had Jim over and Ash acted up and was sent to her room where she proceeded to throw a full blown fit and threw things. We ignored her and eventually she was able to come back out of her room and play for a little bit.

We did get our food stamps, medical, and families first. I swear doing this is like commiting financial suicide. We are now in a desprete hunt for low income housing. But atleast we have medical and food stamps. I am able to go to the doctor and find out what is going on with me. Lord knows I have a long list of things that have been wrong for years now but never been able to take care of them due to lack of insurance and money. I go Jan 5 so I am excited and my list is ready.

Speaking of doctors, Ash is seeing a neurologist soon. Our counselor has noticed some things that need to be diagnosed so we will see what the doctor says about them. If we are right she will need some extra types of therapy to get better and it might help our situation now.

So that is about all for now. It would be so nice to have support as in friends but either way we have to keep on moving foward.

Julie n Ashley

Saturday, December 12, 2009 11:21 AM CST

Well the last couple of days have been okay I guess. Thursday Youth Villages was here to help me get her up. She showed up before I got Ash up and hid most of the time watching what happened. Well it happened alright, Ash would not get up, threw a fit and tried to throw her pants at me. That was all she had left to throw besides stuffed animals. Her room has been cleaned out big time, 2 boxes worth of hard stuff. After a while Cameron took over letting Ash know she was there and helped me de-excalate things.

That afternoon was the meeting at school and I am about to knock them upside the head. "We don't see anything so we just don' know what to do"? Well they better think of something because of the risk of being taken from home. So her teacher decided with Ash in the meeting to offer her the chance to bring Woofy to school her most prized stuffed dog. Well on Friday it worked. Ash was up and ready in no time flat and made the bus. I hope this keeps working for us.

I also took the leap to apply for help with the state. Ash will have insurance either through medicaid/SSI or the same I will have through the state. We will get food stamps and Families first to survive. I will also be getting the exemption to work so that I can be home. Not like I can actually get a job dealing with this.

Other than that things are fairly cool this morning. She is hyper and not listening very well but hopefully that will slow down a bit. I just keep thinking about us leaving next Saturday for MI for Xmas. A nice break for me and no school to deal with for either of us.

I'll update in the next few days, probably Monday unless things go south.

Julie n Ashley

Wednesday, December 9, 2009 10:19 AM CST

Well it's not been that long since I updated but things have been awful here. Ashley is very upset about school and I have known this. The hosptial had said she would do better in a small class as she was in there. Well the school won't do it, Ashley gets teased therefore she does not want to go. Since she does not want to go all of the things I tell here I don't believe are caused by her meds. I think overall they are okay. She is so full of anxiety that she does not know what to do.

Getting up the morning is HELL. The physical violence is increasing. I have been hit, challenged, body butted if there is such a thing kinda like head butting but with her body, she has gone in the kitchen looking for something to strangle herself with, she has hit me upside the head with a football thrown at close range as hard as she could, she has spit at me, swung her toy sword at me and poked me with it, need I say more? Those are some of the goings on from the last 2 days before school. Ashley has 3 lates from this crap and if there are 2 more truancy is in our future.

I have had to have Youth Villages here in the mornings to help keep us safe because someone is going to get hurt if this continues and they know it. Ash is at high risk for being taken from the home if she does not stop this violence. YV will be here in about 30 minutes to go through her room and pull all toys that can be thrown. So all she will have left is stuffed animals until she proves she is not going to do that and try to hurt me or the dog or cat. Thursday morning YV will be here before she gets up to sit in the kitchen out of site while I wake her an to watch what happens. At least someone will be here if she gets out of hand and she will.

So we are in the midst of hell right now. Afternoons are hard but not quite so bad. I can send her to her room and after arguing she goes and stays. When her mood has changed she can come out if she has not fallen asleep.

I am sooooooooooooooo tired and I am loosing the ability to deal with this. I don't want Ashley gone again she needs to be home but I can't take much more of this. She will be so bored and I know what that means for me and it's not good.

We see the pdoc at 2:45 and 3:00 so we both see her and hoping that she will give me some backing on the school thing. I am looking at the alternative school for Ashley in hopes this will help her deal with it better.

I'll update when I know more.

Monday, December 7, 2009 2:15 PM CST

Things just keep going down hill. I think I said in my last post that Ashley is loosing her insurance? If not she is unless they find her eligible for another form of state insurance. Well that also poses a problem because if it's not the right one then we will loose Youth Villages in the process. All of my support is disappearing through people moving away and if YV goes away that is the end. They are my life line and even though they say they won't drop us because they know we need them I can't see them giving service for long without payment. There is very little support here because why people say they care, they do so until they don't understand and then it's gone. This town is just about as cold as Centerville was as far as support from others. There have been a couple of people but that is all, one already gone and the other moving the 30th. There are a couple of people still here that I can call to talk to but no one to physically take her out of here to give me a break when things heat up on weekends or week nights.

But onward, this morning is the reason I am updating again. It was AWFUL!!! Ashley refused to get up and do what needed to be done for school. She got to the point of putting shoes on and that was all she wrote. She was physically aggressive to me slamming her body into me, tried to get me in the face with the wooden end of her horse, she went to the kitchen draw where I had slipped and put one lone knife yesterday unloading the dishwasher and got it out and had to take it from her. I asked her why she was in that draw which has nothing else in it for her and she said that she was looking for something to strangle herself with. She tried to bite me, had my hand in her mouth but did not bite down very hard before releasing. I had called YV and she was on her way but Ashley did not stop when she got here. She crawled around like dog on the floor barking and crying like a dog refusing to talk. She still refused to tie her shoes even once on her feet but eventually did that. It was 10am before she got to school today. I see truancy coming, I just know it.

Not to mention I cant work with this going on. I am at a loss how to get and hold a job when there is a 100% chance that I will be late atleast once a week if not more because of this crap. I'd like to know how people survive, those who are lazy and just keep reproducing get help. Those who are not legal in this country get help but I have a disabled child who SSI won't pay and is trying to take her insurance away from her and me unable to work because of her and there is no help. That is as low as it goes I am afraid. I now see how people get so fet up that they just totally come unglued with the system and how bad things happen. The system does not give a shit that is how.

I can feel the love!!!

Julie n Ashley

Monday, December 7, 2009 2:15 PM CST

Saturday, December 5, 2009 10:42 PM CST

I just don't know where to start. The past month or more has been nothing short of challenging. Ashley is regressing even though we stay on a schedule and has walked away from school. That caused all kinds of trouble with the police almost becoming invovled. There are fits at home, back talk, throwing things at me etc. Not sure what is going on but just hoping that she can be turned around without hospitalization. I am sure there will not be any hospital unless she hears voices again.

We are also going to try moving. We will be in Michigan over the holidays and I am going to talk with family and let them know exactly the toll all of this shit has on me. There is nothing for us here in Middle TN, no support at all so why stay. You seem to have to be someone in this town before people give support and needing support gets misconstrued. So if we can pull off some support to move to MI like help financially getting there from my family we will go. Otherwise we are considering moving with friends of ours to East TN. She is a big support to me living right next door knowing what goes on and helping. They are moving on the 30th of this month and said we should go with them. Might be more jobs and a new start over there. So if MI does not work I have already looked into section 8 housing over there just in case. I am tired of this town, almost just as bad as Centerville was. And I hate to say I've learned not to trust anyone here so moving is our best bet with a new start. Michigan is our best bet and what I am really hoping for.

The latest bombshell was dropped on me last Thursday, Ashley is loosing her insurance. So it's time for me to do what needs to be done so that she and hopfully I get insurance somehow. SSI Disablity is a joke and nothing short of a joke.

So aside from being incredibly stressed out things are dandy. Not sure what else can go wrong but if it's there I am sure it will.

I'll update again soon.

Thursday, October 29, 2009 6:41 PM CDT

Well, we have had an interesting day. I had teacher conference today and that went well. Ashley still sucks her thumb and it's a self soothing thing. When she is stressed, upset, or whatever she sucks her thumb. With that at 7 years old and in 2nd grade you know what happens. Yes, teasing. Well we are working on ways to stop this from happening. We have some good ideas so far like there is a certain kind of rock that Ash can keep in her pocket to play with when she feels the need. They are also going to start sending her on errands when they see her starting to suck her thumb or to get a drink of water to distract her so that she won't do that in class. Hopefully she won't catch on to that part but the other part Ashley is very open to.

The last part of our day was not so good. I had Ash outside when we got home and she was finishing an oreo McFlurry from yesterday. She was done and wanted to go around the corner to throw it away and I said it was okay she just had to come right back. Well she did not. I waited a reasonable amount of time and watched out the back and she never came back. So I started calling for her with no answer. I started to think here we go again she is gone and I will have to call the police again. But finally she answered from afar and came back. Needless to say she came inside and threw a fit. She cried, screamed, threw herself on the floor and kicked. She not allowed back out and started her mouth. I had grounded her through holloween and she would not be able to go trick or treating. I did not say that or ever even imply it, I had told her she was in for the night and could go out tomorrow. Then it was she was a bad and stupid kid and hse plugged her ears when I tried to talk to her. So it was a bad night for a while. Then I got her dinner ready and she ate and played on the computer, took her shower and is back to normal again thank goodness.

My moms surgery is November 11th to remove the lump in her breast and see if it spread. Then she starts 3 weeks of radiation. She will go 5 days a week. Hopefully this won't be to hard on her.

Also my friend Dawn is in the hospital so please keep her in your prayers.

That is it for now.

Julie n Ashley

Sunday, October 25, 2009 1:25 PM CDT

Hello All,

I know this update is a quick considering I just did one last night. We attended our new church this morning and it was very nice. We went and did the Sunday school and Ashley went with Alta and they let her stay with Alta which was nice. Ashley said the Pastor was very nice, I did not meet him til after service was over. I attended the Women of the Bible sunday school class which was small but also interesting and nice. The service was contemporary and not what I am used to.

There were 3 that were singing with microphones and the words to the songs were showing on a screen up front. There were two that were playing the guitar up front and I know one of them from Saturn. He took early retirement before I ever got laid off fromt he data center for the final time. Then the sermon which was good as well. The kids are there for the sermon which is nice, all of the kids stuff is before the sermon.

After the sermon we got to talk to the pastor with Emma and I thought he was very nice as well. It will take some adjusting to but Ashley liked it very much.

Last night was something else. I don't know if I mentioned this or not. Ashley was watching the holloween stuff on Nick last night. I let her watch the iCarly and that kind of stuff. Then a show called Goosebumps came on which looked harmless but I still said no to it. Well she said she was okay and wanted to watch it, she was fine with it. And she was for about 3/4's of it. Then she started with turn it off, turn it off. It was total panic after that and she would not sleep alone. But today she is fine so that is forgotten about I hope. I won't know forsure til bedtime comes along.

Anyway that is all for now. I have school clothes to get washed, have to go to the dollar store, and can't forget the outside time to get in either.

Julie n Ashley

Sunday, October 25, 2009 0:08 AM CDT

Hi All,

Ashley is home for good now. She is doing okay so far and I hope it stays that way. She has had a couple of issues and I am hoping that is all we have. I have been punched once and she's thrown a fit or two that did not get her anywhere. She also has been playing with her friend next door who is almost 4. She begs to go and see him and have him outside but then another boy comes out and all of a sudden I have a brat on my hands. She does nothing but yell at her little friend and ignore him. I had a long talk with her about that. She pulled that crap today and I was steaming mad at her behavior. She begged all day to go knock on their door and we finally go out with them and she ignores him and mistreats him. There will be NO MORE Of that I will see to it. If it means she no longer plays with the other little boy who is a brat.

We have Youth Villages coming and helping us and I am so glad we do. Right now it's mostly questions and paperwork but we are getting there. Since I was laid off again, yes AGAIN, I've been home to meet with them which has helped.

We are trying a new church this sunday with a former coworker and I am really hoping it will be a place we can stay. I have put it off but now Ashley is ready to give it a try as well and is excited about it. I thought I'd have a hard time with her changing but some external factors have changed her mind and she is very willing. I am looking forward to seeing my friend again too.

Well I have to go, I have been sick again and still not back to normal. Right now going to church is iffy depending on how I feel in the morning. I have had really one good day since Tuesday when this started. OHHHHH and I almost forgot I saw the eye doc for eye pain that has been going on for a year now. I knew there was inflamation but now I know it's uveitis which is not good and that I have to have eye surgery on both my eyes. GREAT!!!!

I'll update soon!

Julie n Ashley

Saturday, October 3, 2009 2:25 AM CDT

Well it's another late Friday night and we are just settling in for the night. Ashley just got in bed and I am heading in that direction soon. I am glad to have her home again and we are going to take it easy this weekend. We've had plans every Saturday and it's worn me out.

I had a nice talk with her Pdoc in Atlanta today. I found that I was right about her being on prozac and that it activated her and caused hypomania and irritability so they pulled her off and doubled her dose of her seroquel. I also talked to him about Ashley and school and what I need to push for in school. He thought I was right that she needs the smaller classroom and that if the school refuses at an IEP meeting that I might consider an education attorney to help me force the issue. I know budgets are tight but a child needs what they need. So I will request that IEP meeting and if I don't get results then I will tell them I will get an attorney. Doc said that normally works. So it was a nice talk and I am very pleased with him. The only thing is he is on the line as to whether you can dx a child bipolar which is bull but he is treating her well so that is not an issue. He thought it was sad how other pdocs have treated her. We also discussed Ashley's anger issue and he is going to talk to Ashley about it and agrees that it needs to be resolved. Also that Ashley needs to learn to deal with things too but that will come with time. So that leaves me to get the stage set for her to deal with it and hope for the best.

I'll update again after our weekend is over. I am just about seeing double so I think that is a sign I need to go to bed. That is go to bed with the thoughts of who I met tonight totally on accident HAHA!

Julie n Ashley

Saturday, September 26, 2009 10:33 PM CDT

It's another great weekend with Ashley. I got her yesterday and Jim went with me. I drove down and he drove back. I am greatful he did because by the time we hit Columbia I could not see straight. I would not have made it home very well if he had not driven. That last hour back both Friday and Sunday are killers and I hate to say I don't remember much of them. But I have no choice but to drive so I do it.

Anyway, I tured 40 today and Ashley and my friend Dawn had a cake and a gift for me. Ash sang Happy Birthday a few times and was great today. We visited a coworker at home with her two little girls and they played together. They made pumpkin puff pastries while we were there. Ash got to help make them and she loves to do that. Ashley loves to cook.

I found that Ashley medications changed again just from last week. They had put her on Prozac to help with anxiety and I knew that was risky for someone who is bipolor. I guess it did not work out because she is off of it now. They raised her dose of the antipsychotic by 100mgs per day unstead. I also found that Ashley has temporarliy lost her pink diamond status by getting to many redirections. She dropped from green to yellow status and she can't be yellow and have this. So she has to raise it back up to get her status back. I also found out that they want to release her a week earlier than I thought. They were looking at the 15th but now it could be the 8th. So I am going to have to scramble to get her registered in time and get her in daycare. They needed 2 weeks notice to get her one on one care at the YMCA. So I guess that will mean a couple hours off to talk to the principal and register her then go get her in daycare.

Ash is carrying some anger with her. I can't figure out how to make it better for her. I know why she is mad and who she is mad at but I am powerless to fix it. I know she won't either. I think it's resulting in some behavior that she should not be showing. We stopped at McDonalds last Sunday to get dinner for her on the road. She wanted her meal but no drink because she had one in the car. Well that is fine. They put her cup out on the counter anyway not listening to her. I told her all she had to do was leave it there. She got madder and madder and eventually just reached out and swipped the cup accross the counter and said I DON"T WANT THIS CUP, I DON'T WANT A DRINK!. The week previous I had issues with her and anger as well. It kills me because I know why but I can't do a thing about it.

I can't believe this weekend is almost over. I have to take her back tomorrow and I don't want to do the drive at all. I am having a hard time keep up with everything and no energy does not help. I have serious doubts about a lot of things right now after she gets out of the hospital pertaining to me. I guess I'll just have to see how it goes. I just know that this is affecting me at work even though I try hard not to let it and that has to stop. I am just stressed out and tired. I can't think or function like I should and I am not moving fast enough. We are going to have so much going on after she is out it's not funny. With Youth Villiages coming in to help us and appts I am not sure if work will hang on or not. I think they are waiting to see how this plays out. I am between a rock and a hard place because there has been around 80,000 spent on getting Ashley stable and I feel like I have to do what ever it takes to maintain this. The appts the in home care all of it. I can't let this slide because I can't let things get bad again. But I also have to have a job. So, will someone tell me how am I going to make this work? There is no help out there at all so that I can do what needs to be done to take care of her and live.

OH well I guess what ever happens, happens. I have been looking at low income housing so that I can pay as little as possible yet hopefully stay out of a terrible neighborhood. I have to reduce rent so that I have more flexability. I'll figure it out I suppose. I've been in this alone for the most part all along and have made it somehow I can continue. I will say the thought of moving again makes me ill. I hate moving!!!!! The cost of paying movers will kill too.

I'll update again later. I have to get to bed and I can't forget that the toothfairy has to come still too!! Ash lost another tooth last weekend. I know she will have to spend the money right away!!!

Julie n Ashley

Saturday, September 19, 2009 2:33 AM CDT

Well it's been a long long day. They want Ashley coming home as often as possible to integrate her back home and so I had to leave at 4pm again and go get her. We got hom at 1am. So why I am still up at 2:30am doing this I don't know HAHA.

Ashley is so happy to be home. She is getting her pink diamond status at the hospital and that comes with a lot of privledges. She is the first in nine months to earn this and I am so proud of her.

I got her home and went through her meds and there are now five of them. She is now on prozac as well for anxiety, 10mg a day. She would be released sooner but they have to watch her carefully on this. When someone with Bipolar takes an antidepressant it can activate mania and lord knows we don't want that happening. That would totally destablize things. So it's best they wait and watch her. So now we have Lithium, Seroquel, Tenex, Concerta, Prozac. I know when we saw one pdoc at a place I won't mention he put Ash on prozac and it was disasterous so I really hope they are carefull. Ashley started wanting to kill herself that time. When I told him he said "that's not my problem, what do you want me to do about it". Nice doc huh? Anyway I am sure the hospital knows what they are doing. She is acting fine so I am not worried.

I'll update again after her visit. I am to tired to think.

Julie n Ashley

Wednesday, September 16, 2009 9:46 PM CDT

Well, we had our family therapy today and it was interesting. I have a firm date for Ashley returning home and from the last time instructions on some things that I have to make sure happen and do not happen. This week I was told that they want her to come home each weekend up til release on October 15th to help her integrate back home. I was also told they are doing another medication adjustment/add. Ash is suffering with anxiety which I have known for a long time and they are putting her on something to manage it. I heard Ashley say paxil but I am not entirely sure that is true until I see her medicaitons sent home.

Along those lines and the reason I think she is being put on something for anxiety or at least part of the reason is her issues with abondonment. She has real issues with that and she has every right to. So I have been instructed by the unit directer who also does our therapy that I have to be very careful in the future who comes into her life. Which of coarse includes my dating which is non existant anyway. But if it did exist I would have to not let her meet them until it was serious and I knew they would be around. But those who are in her life and those who come into her life in the future will have to understand her issues and know that what you say you must follow through on. It kind of boggles me because how am I supposed to know what people are going to do or not do? Not to mention I can't control poeple anyway. I guess this just makes it a little more confusing and hard for me. I don't know I will just have to becareful and judge people I guess. I can't let this cause her to become unstable. We've worked to hard to get her this far to let that happen.

Anyway, Ashley is getting pink diamond status at the hospital. I don't remember all that entails but it is a very high privledge only given out to those who have been good long term or what they consider long term. Ashley is the first in nine months to obtain this status. Once she gets the paper work and it's signed off on she will be allowed to leave site with staff and go places, she will be allowed to order food out and have it brought in to her, McDonalds, Pizza, Chinese etc. So I am very proud of her!!!! YEAH ASHLEY!! She could have had it sooner but I guess she had an incident on self harm, head banging which set her back a little bit.

So that is our story at this point. I will be so worn out driving all those miles. I wish I could fly it LOL or someone else to drive it. I used to love to drive and now I am really beginning to hate it. But I will do what I have to in order to make sure that her coming home works.

I will update again probably after our visit this weekend. Please wish me luck in talking to my boss about the time I will miss when she comes home and that I don't loose my job over the missed time. I am very worried about this and willing to do what I have to but I also have a daughter and I can't fail her either. So we shall see.

Later

Julie n Ashley

Monday, September 7, 2009 11:08 PM CDT

PLEASE SIGN THE GUESTBOOK WHILE YOUR HERE. WHEN I AM DONE WITH THIS SITE IT WILL BE TURNED INTO A BOOK FOR ASHLEY AND I WOULD LIKE EVERYONE TO SIGN THAT VISITS.

UPDATE: Say a prayer that Ashley does not get the flu or strep. I was fine Monday or so I thought but that is not true now. I have both. Someone shoot me I think I would feel better!!

Well today was not so easy. Ashley is heartbroken over a couple of things and was getting angry. She had a few anger issues Sunday but not as much as today. She had a very hard time Sunday evening and we worked through it then going back came up. She said that she was going back because she was bad. Well that is not true and we sat and talked about it. When Ashley gets mad now it's very obvious it's coming and it's like a volcano ready to explode so when I hear it starting I start asking questions real fast.

We went to visit Ms. Judy and Shelly today and had a good time over there. When we got back we had trouble. We had to take meds and get lunch in then Ashley had time outside to do as she pleased before leaving. I wanted to eat too, why I don't know, but I did and Ashley did not like that very much. She just wanted outside and my having to eat was holding her up, darn it!!! Well I let her go upstairs and knock and see if her friend could come out and play. They told her yes after she finished helping put groceries away. So I finished up and we were outside til we had to leave with no friend in sight. Holy cow help me. That did not go over well and the world almost came to an end. Once we got over that and got on the road she was okay.

Now we get to the hospital at 7pm eastern time and we are told that they are giving meds in the unit and we have to wait 15 minutes for someone to come and get her. That is fine. Ashley starts talking to the receptionist who was very nice. Telling her about the girls who when they get mad take it out on Ashley and hurt her. They push her down and Ashley has been backed into a corner covering her head and punched repeatedly. So after 30 minutes of waiting and Ashley going on and on about how they hurt her there we are told that they are not only short handed but in termoil in the unit and we will have to walk to the gate for someone to get her. Ashley overhears that there is termoil and thinks it is a code 10 in her unit and starts to get mad and flip out. Her arms start going and she starts hollering she's not going back there, they will hurt her, she will not go back there and let them hurt her they have done it before and she is not going back there again. I go into action trying to calm her and tell her that we don't know what is going on, we don't know who is causing trouble in the unit and it may not be anything. She won't get hurt going back in there and she should not worry about it. Did it work, YEAH RIGHT!!! The receptionist comes out and walks us to the gate and I give Ash a big hug and kiss and hand her the bag to take with her. She comes right back to me head down for more. As I tell her she has to go she looks at me with a look of terror on her face about going back to her unit. Tell me that does not break my heart. I cried on the way home that just kills me. I cried from GA through Chattanooga. Ashley told me she would call me and tell me if they hurt her and you know she called me. She had taken her shower and said that the girls were scaring her and the staff moved her to another shower. Ash said "I did not even care that the shower they moved me to needed the light changed. I took a shower in the dark, they scared me".

It's times like this when I am alone and I just loose my desire for everything. I have no desire to work or do anything at all. I feel so alone in all of this it's not even funny. A phonebook full of people and don't feel like there's a one I can call. I get home and do homework and wish I did not have to go to work in the morning. Having Ashley home is so nice and then coming home to an empty home again is so depressing. She was so funny, I lent two wine glasses to neighbors for a dinner they had. Ashley saw the clean returned glasses on the counter and insisted on drinking her juice from it. She did, all weekend LOL. So cute. I miss her already. But only 30 days to go then I will have her home again and hope never to have to do this again.

I'll update later. Time to finish this class with the teacher from hell. I've lost more points because of her it's not funny. May as well go answer two people and loose some more. So much for graduating with honors.

Monday, September 7, 2009 11:08 PM CDT

PLEASE SIGN THE GUESTBOOK WHILE YOUR HERE. WHEN I AM DONE WITH THIS SITE IT WILL BE TURNED INTO A BOOK FOR ASHLEY AND I WOULD LIKE EVERYONE TO SIGN THAT VISITS.

Well today was not so easy. Ashley is heartbroken over a couple of things and was getting angry. She had a few anger issues Sunday but not as much as today. She had a very hard time Sunday evening and we worked through it then going back came up. She said that she was going back because she was bad. Well that is not true and we sat and talked about it. When Ashley gets mad now it's very obvious it's coming and it's like a volcano ready to explode so when I hear it starting I start asking questions real fast.

We went to visit Ms. Judy and Shelly today and had a good time over there. When we got back we had trouble. We had to take meds and get lunch in then Ashley had time outside to do as she pleased before leaving. I wanted to eat too, why I don't know, but I did and Ashley did not like that very much. She just wanted outside and my having to eat was holding her up, darn it!!! Well I let her go upstairs and knock and see if her friend could come out and play. They told her yes after she finished helping put groceries away. So I finished up and we were outside til we had to leave with no friend in sight. Holy cow help me. That did not go over well and the world almost came to an end. Once we got over that and got on the road she was okay.

Now we get to the hospital at 7pm eastern time and we are told that they are giving meds in the unit and we have to wait 15 minutes for someone to come and get her. That is fine. Ashley starts talking to the receptionist who was very nice. Telling her about the girls who when they get mad take it out on Ashley and hurt her. They push her down and Ashley has been backed into a corner covering her head and punched repeatedly. So after 30 minutes of waiting and Ashley going on and on about how they hurt her there we are told that they are not only short handed but in termoil in the unit and we will have to walk to the gate for someone to get her. Ashley overhears that there is termoil and thinks it is a code 10 in her unit and starts to get mad and flip out. Her arms start going and she starts hollering she's not going back there, they will hurt her, she will not go back there and let them hurt her they have done it before and she is not going back there again. I go into action trying to calm her and tell her that we don't know what is going on, we don't know who is causing trouble in the unit and it may not be anything. She won't get hurt going back in there and she should not worry about it. Did it work, YEAH RIGHT!!! The receptionist comes out and walks us to the gate and I give Ash a big hug and kiss and hand her the bag to take with her. She comes right back to me head down for more. As I tell her she has to go she looks at me with a look of terror on her face about going back to her unit. Tell me that does not break my heart. I cried on the way home that just kills me. I cried from GA through Chattanooga. Ashley told me she would call me and tell me if they hurt her and you know she called me. She had taken her shower and said that the girls were scaring her and the staff moved her to another shower. Ash said "I did not even care that the shower they moved me to needed the light changed. I took a shower in the dark, they scared me".

It's times like this when I am alone and I just loose my desire for everything. I have no desire to work or do anything at all. I feel so alone in all of this it's not even funny. A phonebook full of people and don't feel like there's a one I can call. I get home and do homework and wish I did not have to go to work in the morning. Having Ashley home is so nice and then coming home to an empty home again is so depressing. She was so funny, I lent two wine glasses to neighbors for a dinner they had. Ashley saw the clean returned glasses on the counter and insisted on drinking her juice from it. She did, all weekend LOL. So cute. I miss her already. But only 30 days to go then I will have her home again and hope never to have to do this again.

I'll update later. Time to finish this class with the teacher from hell. I've lost more points because of her it's not funny. May as well go answer two people and loose some more. So much for graduating with honors.

Sunday, September 6, 2009 1:58 PM CDT

***EVERYONE*** Please take the time to sign Ashley's guestbook. When I am done with this site I will be turning this into a hard cover book and want everyone to have signed who has touched our lives. Please don't get left out!!!!!!

Ashley is home! She came home Friday night and it was a long long long, did I say long? Long night. I left work at 4pm and drove to GA to get her. I was cutting it so close that stopping to use the restroom was almost not even an option for me. Thankfully I needed gas so I had to stop. I got there and her ane Metria were waiting for me in the lobby. We listened to a book on CD on the way home, Marley and Me, what a story. Had me laughing and Ashley fell asleep fairly quickly after I brought her a doughnut to eat. I pumped her up with sugar and she eats it and goes to sleep, go figure HAHA.

We spent Saturday at home enjoying our time. She is doing very well at home. She spent some time outside with a friend of hers who is 3 years old and played. She listened pretty well, nothing out of the ordinary happened. My gosh how good it is to say that. Oh but our fish died on Saturday, might have been Friday when we were not here or during the middle of the night. Swimmy will have to be replaced when she comes home to stay.

Sunday went well too. She came to church and she stayed with me. She did well during worship and she has recieved a lot of compliments from people. She was very shy around people but that will get back to normal again. She got to talk to the one person that she's been asking for for weeks now.

After this visit home she will have 30 days left in Laurel Heights and will come home for good. Ashley at this moment is sitting and doing a 100 pc puzzle which is something she could not do before due to her frustration level. She is sitting on the floor outside the kitchen quietly doing it. No getting mad or throwing a fit or saying I can't do it. What a change. I just got done telling her that before she would have been telling me she could not do it and throwing a fit and she smiled and looked at me and said "I can do it". I told her I knew she could and how proud I was of her.

That leads me to the part that scares the hell out of me. Things have to be so structured here and I can deal with that. I think I can, I have no choice in the matter. I am really worried about handling this alone when she returns. It's back to work, school for both of us and the schedule and all of the pressure plus more and I am having serious doubts about me. Not to mention while my job is going great it was said to me in the interview that they did not want someone that had something always going on. Well they got the wrong one! The phosp is talking in home help when Ashley gets out plus pdoc visits and therapy how is all of this going to happen outside work hours? We are heading into busy season right now, no time off. I have to get the details from the hospital and then approach my boss with them and a resolution and hope it flies or be out of a job again. I know I can get therapy on saturday if Gayla is willing to see Ashley and now that Ashley has opened up I think we will be okay there. But her pdoc is in Nashville, closes at 5pm as far as I know and that leaves me leaving early. The in home care I have no idea what the timing of that will look like and they are the only ones that do. Hopefully this will all work out because I really like my job. I spent a lot of time worrying that when I found one I would not like it. It's all a part of the stability for Ashley.

Thing are good other than my being terrified of her coming home and me having to handle it alone agian. It will be a different kind of handling it I know but one that comes with a lot of pressure to get it right. I know things will not be easy and when things start to fall apart I loose a handle on the hole schedule thing. I really resent sometimes that I have to do this alone.

Monday, August 24, 2009 8:10 PM CDT

UPDATE: I had my conference call today with the unit director. Due to the success of her visit she is coming home for the Labor Day weekend!!!!! YEAH ASHLEY!!!!!

Hi All,

Things have been rough but there was a bright spot in all of this. Ashley got a theraputic leave this past weekend and it went very well. Ashley was a different little girl when she came home. She was calm, directed, listened to me, followed her schedule, and talked my ear off. She spoke normally, no baby talk, no regression, and made sense. She was able to talk to me about her therapy and what she needed and things in the past that might have affected her. She mentioned that there was not enough structure and that was somthing throwing her off here at home. She said that it was the cause of her hearing voices but that she could not tell me before doing something because she could not stop herself from reacting to the voices. She admitted that while she needs this structure that she also still feels the need to be in control and have things her way and do what she wants when she wants. She she is really coming along and and able to admit things and tell the difference between good and bad. I can't say how pleased I am. On the other hand there is nothing like pressure when it comes to upholding what the hospital has done for her. I will admit I am a fly by the seat of my pants person and I am not good with structure either. I do things as I need to or want to and not on a time table. So when she comes home things will be hard for me as well.

I have spent a lot of time depressed lately. I have cried every night because of what this thing mental illness does to people. The way it makes others treat you to be exact. If this were cancer or a broken arm or leg people would know what to say and how to react but even those who know me have no idea so they close their ears and walk away and it hurts. This is so isolating and I don't know wbat to do to stop it. I fight those who do close their ears but it just causes conflict and that is not good either. It' snot just me that they don't know what to say to it's Ashley too. If people would just ask, that is all they have to do is ask I could tell them. People don't want to get involved with things they don't understand and things that they can't fix. It's very hard to deal with on top of everything else. All this and a new job that I really like but am so overwhelmed with. I am because of everything else that is going on and I just don't have it in me to get things done.

Oh well, nothing I can do about any of this. This is my life and I have to live it and deal with it. It has to be done either with others support or alone and I guess I do it alone. It is just hard when there are certain people that are not supposed to do this to you and they do it anyway.

Well I gotta run. I am hoping to have Ash home again at the holiday so I will update again then and let everyone know if she comes home and how the visit goes.

Julie n Ashley

Friday, August 14, 2009 5:32 PM CDT

Well it's been a while because I could not remember the password to get in here and all of a sudden it came to me. Things have been crazy and not in a good way. Ashley as I said has been in and out of Vanderbilt psychiatric and she had her last one 6 weeks ago. She had only been out for 3 days and was back in for her 3rd time and has not come home yet. She was released straight to residential treatment in Georgia. She has been there for 5 weeks now and is expected to be there for 6 months.

Right now she is hurting herself a lot and getting into a lot of trouble while she is there. I do miss her a lot and it hurts a great deal to have her gone. I don't deal with the actual issues anymore but it sure is lonely and it sure does hurt with her gone. It's a daily struggle to keep going and I don't have much help doing so.

I have to say this and if anyone here deals with mental health issues you'll understand where I am coming from. And there will be some who will read this and say that I am full of it but until they walk in my shoes or anyones shoes that has gone through this they DONT get it. Mental health issues are treated by others so differently that illnesses of the body. I am so damn frutrated by people treating my daughter as though she is just gone for a while and needs nothing because this is just in her head. Lord knows I surely don't need anything either. I've not been through anything either. If this was a bodily illness I would not have to ask people to pay her attention with phone calls or even to take one day of their lives to go visit her. But because this is mental illness and people would just assume run away than deal with it I have to ask people to call her and NO ONE but me goes to see her. I think that is so sad. She is 7 years old dealing with this and she deserves more from those who claim to care for her.

Anyway, she will make it there. It's hard on here to be away from home. She is getting her medication adjusted, added to etc. I go see her every Saturday and get to stay with her in the cafeteria for 2 hours then drive home. That's hard but I miss her so much that i look forward to it and that makes for a long drive down.

I will update again after I go tomorrow and see how she is doing.

Julie

Sunday, June 7, 2009 1:22 AM CDT

Hey I am getting better at updating LOL. Things are slowly rolling down hill again here. Ashley's lithium levels were low at last check so her dose was raised and we go Monday morning to get blood work done. Hoping they are back up again. Ashley was also put on Celexa to try to fight the depression she is suffering from. We are also hoping that is does not hurt her being stable because that seems to be in jeopardy anyway.

Ashley is just so irritable and cries so easily. She reads expressions on peoples faces wrong and assumes everyone is always mad at her. She runs and won't come back and has snuck out one time. She has also tried to hit me once lately. She stopped herself and she's lucky she did. She is still saying she wants to kill herself on occasion and is hearing voices too. So things are hard right now and I am hoping that this does not result in another hospital stay for her. We shall see what happens with medications.

What really bugs me is that there are people that we see on a regular basis that just don't get this. These people were the same ones that did not stick by us the whole time that things were bad before she went in the phosp because they did not think they could help. People who are supposed to be on our side, our friends yet they run? I don't understand that. We are alone down here and there's nothing like having fair weathered anyones for that matter. Our door surely was not getting beat down with support during hard times or when she was in the hospital. I sat home alone the whole time practically and there were plenty who knew where she was. I don't know I just need to give up on that and stop wanting any support at all from people. It's just not there because this is not something people can see like a broken arm, leg or cancer. I have learned who my friends are that is for sure and they are not the ones I thought they were. A lot say they will be there and help and they are there to talk to but that is when times are good not when times are awful.

Sorry had to vent pisses me off to no end that even those who are supposed to be there are not.

I'll update after the next pdoc appt in a couple of weeks.

Julie n Ashley

Monday, May 18, 2009 11:17 PM CDT

Well tomorrow is the day we see the new pdoc (psychiatrist). I am really hoping that she is good. After doing all the paperwork and having Lori work with Ashely as well to answer the questions it's clear that depression and anxiety are very much so present. Ashley still wants to kill herself and there are a lot of other things not right. I thought that was behind us but I forget that the meds she is on now are not a catch all. They are meant to stabilize her mood and they have done that. I heard a good analagy the other day. I asked about the meds and the depression and such and was told that the bipolar is like an onion. As you peel back layers you find more issues and that is exactly true. The deeper we dig the more we are finding out.

I have a strong feeling that Ashley will be seeing a child psychologist as well. I also think there will be yet another medicaiton added to the mix of what she is already on. I just hope it does not mess up what he already have done. I'd like to see her stable and happy.

I'll post again after the appt and tell how it went.

Julie n Ashley

Thursday, May 14, 2009 5:13 PM CDT

Hello everyone,

Again it�s been a while since I have updated but not as long as it�s been in the past. There has been a lot going on here. I am still out of work and Ashley has been in a really bad spot. I had posted that we had found a new pdoc that diagnosed her with early onset bipolar disorder and was treating her. Well he too was not good and was not treating her aggressively enough. She was on several different medications and not one time did she make it to a therapeutic does of anything. During that time she was a regular in the principals office at school in trouble, a disciplinary record 2 pages long at school. She was in trouble at home, with the police, I had to call them on her 2 times and then almost had to call them again in Kentucky on our way home from Michigan in early April. She was consistently suffering with mania and was out of control and hearing voices hallucinating. They were telling her to do bad things and to kill herself. We sought help from a local officer here in town who also is now our minister at church and this is over his head too. So at the end of my rope I went to Ashley pediatrician looking for help. I was ready to resort to foster care short term because I could not handle anymore. He knew most of what was going on but when I told him she was hearing voices and what they were saying he said she needed to be admitted to Vanderbilt immediately and he made the arrangements.

So on Good Friday I took Ashley to Vanderbilt Psychiatric Hospital in Nashville where she stayed for 12 days. They completely re-evaluated her condition and her medications, talked to me extensively as well as reviewed her medical records. She maintained her same diagnosis but she now also has psychotic features. Now she takes lithium, clonidine, and zyprexa. These are doing her very well and there are no more voices and her behavior is much improved. We still have behavioral issues to deal with but we are getting help for those with a specialist that comes in our home 2 hours a day 5 days a week and works with both of us.

At least now I don�t have her sneaking out of the house and getting in trouble with the police and running off on me, hitting me, terrorizing our pets, being totally defiant and all of the other things that were going on. Now she is manageable and for the most part she listens. She does have attitude left in her but I think what is left is behavioral and then the rest is normal kid. The changes in me are amazing as well. I went from being totally depressed, doing nothing but yelling all the time and migraines to being on meds for the migraines and not getting them partially due to meds and now reduced stress, no yelling, less stress, and not depressed anymore. It�s amazing! There are no guarantees she won�t wind up in Vandy again someday but for now she is stable, or as stable as she will get and I am grateful for it.

I hope all is going well for everyone and I will update again soon.

Julie n Ashley

Tuesday, January 20, 2009 1:44 PM CST

Hi again,

Things are still crazy here with Ashley. We are on the hunt for a new pdoc again. I hate that search and the one I would like her to see costs to much to see and I don't think insurance will cover the costs. I am however, going to fight insurance to pay for it so she can see him. She has to get stable so that we can have some peace in this house. This bipolar sucks and is so hard to deal with, i am tired of arguing with her constantly and of her saying she wants to die or kill herself.

All of the stress here has me a mess and alone, or alteast it feels like it. I am about as low as one person can be and still have to function which really sucks. Between Ashley and the migraines I am about crazy. Spend my days doing homework, crying, and in bed and some job hunting. I am still not sure how I will hold a job with Ashley's behavior, doctor appointments, and when she gets sick.

I think the worst is that while Ashley has insurance and can get help I have none and can't get help for anything. Trying to hold together while Ashley is here is hard,I won't let her see that. When I do break down I wish someone were there and there never is. I am sure that even if she is stable my being so down is not going to help the situation.

Oh well! I'll update another day.

Julie n Ashley

Friday, January 2, 2009 8:56 PM CST

Happy New Year everyone! Hope it was a good one!! It's been a long time since I have written here, been busy. Ashley is now 7 years old and still not stable. Life at home is hell and life at school is also hell. She has been in in school suspension 3 times lately. She was caught stealing at daycare and money from my purse. The rages continue the aruguing continues, and now I have a safe in the kitchen for the utinsels that could be used to stab herself, me, or the cat or dog. Cancer wise she is fine and on a sad note her onc doc left Vanderbilt for Ohio.

All the stress around here has my migraines acting up on a daily basis with no help in sight. I guess being out of work and uninsured means that I don't deserve medical care. I have a hell of a time taking care of her, doing my school work, and keeping up with the house like this. It is nothing short of a living hell. I might add that I am again out of work. I had applied for FMLA on my last job, got approved and was let go 2 days after for the absences that were covered under FMLA. So I am suing GM and Randstad after I get a new job. I already have an attorney who has had to go after Randstad before so this is nothing new for her.

Anyway that's about all i have for now. I am not sure who is worse off Ashley or me but we will find out in the end.

Julie

Friday, March 7, 2008 8:50 PM CST

It's been a long time and a lot has gone on since I last updated. I know not many read anymore but I thought I would still update once in a while just incase. I have done a lot of writing about Ash and her behavioral problems and I think the last time I wrote she was on risperdal to help. Well since then we have changed doctors because that was not helping at all. Ashley was threatening to kill herself, she was totally out of control I was being hit, spit at, yelled at, called names, and threatened. We found Dr Hill in Nashville and he has diagnosed her with Bipolar disorder. Her previous psychiatrist diagnosed her with mood disorder NOS which if treated right is pretty much the same but she was not treating it properly or aggressivly enough. Ashley almost wound up in the psych ward about 4 months ago after a psychotic episode. We were sitting at the table eating breakfast and all of a sudden like someone flipped a switch in her brain she got up and came over to me with a totally blank look in her eyes and said "Julie, you are the beautiful one who wants to hurt and kill her daughter". Now that was very disturbing but then she goes to the kitchen sink and gets a butcher knife I was using and holds it point up and walks to me, I ask what the knife is for she says "it's to kill me with." Just like that it was over and someone flipped the switch back and she was at the totally opposite end of the scale being overly nice and telling me how much she loved me. The rest of the weekend she hardly said a word, sat, stared and sucked her thumb. After this I had to get a safe with key and combo lock for all silverware and knives as well as anything sharp that is in the kitchen.

We have been hermits because I have not been able to take her anywhere in public because she will have melt downs or run off if she gets away from me and I can't catch her. I have dragged her out of stores on her knees screaming which makes me feel horrible. So needless to say dealing with this on top of my schooling, her schooling, my two layoffs and now a new job that I started in November 07 I have been totally stressed out. I finally went to the doctor and told him that I had to have something to take or I was going to loose it. So he gave me Zoloft and Ativan and is also treating me for my migraines which due to the stress have been horrible. They really picked up late summer, every other day sometimes every day, loosing the vision in one eye, dibilitating pain, totally disabled and laid out. Still trying to get meds worked out. Ashley however is on Abilify and Depakote and is doing well on hers. For the past 2 months or so has been more stable that she has ever been.

So things have not been well here which is why I've not been updating. It's all I can do just to survive right now and take care of us. Ashley is doing well in school however and that tickles me. She has a great teacher and an IEP in place but I know it's the teacher making all the difference right now. Next year in 1st grade things will not be so good. Ashley will not do homework most of the time and she's been allowed to get away with it which won't continue in 1st grade and will bite her.

I will try to update more often. Things are a lot calmer right now and I can only pray they stay that way. The abilify she takes has been a life saver. I hope everyone is well.

Julie n Ashley

Saturday, March 3, 2007 0:57 AM CST

Here I am again! Things are still emotionally wild. Ashley has been in trouble at daycare for bullying kids, not being nice, and throwing things. Yesterday I came in to find her in time out. She had been not so nice to the other kids there. At naptime she was found throwing everyone's covers around the room and had one child in tears. After naptime she went to the bathroom and never came out. When she was checked on she was found slinging water all over the bathroom. After we left there we had a couple of errands to run. I should have known better than to take her with me because she started arguing with me right away. She has a habit of running away in stores. She will tell you she wills stay with you,she will never do that again just give her one more chance!! NO NO NO No more chances. They never work. So we hold hands and I get pulled all over the place with her arguing all the way. Then we go to another store for a few things and she starts there because she did not want to be in the cart. Actually a cart is not even safe. If I turn my back for second she will jump out and take off. Then I look like an idiot chasing her. Then she argued all the way home over everything I said to her. I was happy to see work this morning.

I was so excited to have a weekend to myself again and her father cancelled on me. I treasure my breaks from the arguing that goes on in the house day in and day out over absolutly everything possible. Just getting up in the morning is an argument, then getting dressed normally takes atleast being threatened with in an inch of her life which makes all mornings miserable. Oh and evenings are the same way. First just try to keep clothes on her. Everything bothers her. Tags in the clothes bother her, underwear bothers her, and socks forget it. The line in the toes makes them unbearable. Picking up our messes that does not work either. She makes the mess and then when it's time to clean up, she wants nothing to do with it. I make her do everything!! Poor Ashley.

Now that her father is in the picture again he is taking part in the disipline. He told her daycare person and myself that if Ashley gives any trouble to call and he will come down. Ash's daycare person told Ashley's dad how sorry she feels for me because of the way that Ash treats me. And the only explaination that Ashley has is she does it because she wants to. Did anyone see the Nanny this past week? That is similar to what I deal with. A little more extreeme but close. I don't get the hitting, someone very close to us who has been like a father figure to her gets the hitting and kicking. She gave him a black eye for not getting her own way. Nice huh??? I have called her father one time just to have him talk to her. It was a sight to see. Ashley had been acting up big time. She was in the middle of the floor screaming so I called her dad. she would not take the phone from me at first, but after she did it was amazing the change that happened. She stopped. Must be dad's voice I don't know because I could threaten anything and get no results.

Anyway, Ashley's blood work all came back fine. I had to have her prolactin checked as well as blood sugar because of her meds but they were fine too. We go back in one year for another check up.

The GI doctor put Ash on a laxitive and it is doing it's job. No blood so far. I am only giving it once a day and ger bowel movements are loose. So far so good. I sure don't want to see a colonoscopy done on her if we can help it.

Well it's late and I gotta run. I have accomplished nothing tonight. No school work, no housework, and now it's almost 1:30am.

I'll update again soon.

Julie n Ashley

Wednesday, February 21, 2007 8:07 PM CST

I am back to update about our visit to Vanderbilt today. It was a long and a rough day. Ashley got herself all worked up about having blood drawn and her stomach pain came back again. She suffered for a good part of the day while we were running around.

Anyway, we saw Dr Rhodes and all is well on the cancer side. After we saw her we had time inbetween appointments so we went to Ben and Jerrys for a shake. I must say I have never in my life paid almost 10 dollars for 2 small shakes. I almost choked when I saw the price, but I had promised so shakes it was. We then went and met with Dr. Arthur the GI doctor about her pain and the blood in her stool. I have to say I really liked her. She was great and very open with us. Ashley has to start taking Glycolax to see if that softens her stool enough to stop the bleeding incase there is a fissure or hemmroids. If this does not work in 30 days then she has a colonoscopy done. The doctor is thinking that if this does not work to stop the blood that there are polops there. I can't spell either LOL. So they would be removed and in a child most likely would not mean cancer thank goodness.

On the way home Ash was still worked up and hungry. So I stopped in Fairview for food. We got ten minutes down the road and she throws up. But as of now she is fine. She has eaten and nothing happened and she is acting okay. So hopefully that was just the result of being so worked up.

Mentally things are still wild. Her medication dose was upped so I have not heard anymore about killing herself. Her father is back in the picture again and he is trying to help me get her attitude under control. Ashley's daycare provider told her father when he picked her up that it made her sad to see how badly Ashley treats me. Terrible but true. So hopefully counseling and her fathers help will make things easier. Would sure be nice to have family around!!!!

Anyway, gotta run. I will write again after I know some results.

Julie n Ashley

Friday, January 12, 2007 10:22 AM CST

Hello again!!

Been a while, again LOL. Ashley turned 5 on November 27th and starts school this year. Her birthday was something else. She begged and pleaded to open things early and I let her have a couple just to quiet her down. The times I said no a major fit ensued and I was not in the mood for a fit. She got a lot of neat stuff for her birthday and was very happy.

Christmas was also very good. She clean up on toys and things. I had my Vue packed solid on the way home from Michigan. Most of the things in the car were Ashley's and not mine.

Health-wise there is plenty going on. Emotionally things are still crazy. The arguing is not slowing down a bit. She is still hyper and her dose of adderall is higher than it was before. The other night she got in trouble and was being held and gave a good friend of mine a black eye by punching him. She later got mad at me for something and made it clear that I did not love her anymore and that she was going to kill herself. I had not heard that in a long time so I was shocked at hearing that again. I had a talk with her and she said she was just joking. I hope after our talk that she understands that we don't joke about something so serious. She is also still suffering with the stomach pain. She did have urine tests run and protein was spilling in her urine but that stopped happening. Now there is blood which she goes to the bathroom. So we are now scheduled to see a pediatric GI doctor to find out where the blood is coming from. It has me quite worried.

Ashley is in new daycare now. Ms. Judy retired and Ashley does not like that. She now goes right next door to our house to a licensed daycare. It is very convenient for school starting because the bus can pick her up there and drop her there. And it's nice for me to have the quiet ride to work without arguing.

Well that is all for now. I will post again after we know some results from the GI doctor.

Hope everyone is doing well.

Julie n Ashley

Friday, October 13, 2006 7:54 PM CDT

Hello,

It's been a little while since I updated. We are hanging in there. Ashley continues to do okay on the medications. She is also on Adderall again. That is helping the hyperactivity quite a bit and without the rages we saw before. On the other hand the antipsychotic is doing a good job but we are seeing the cruelty to animals back again. Ashley was found shaking the crap out of a kitten and she threw another small cat. Both are okay thank goodness. She also scares our cat to death. Then cries when he won't come to her. But she did admit today at the doctors office she thinks it funny to be mean to animals. Not good.

I am about to go nuts. From the time we get up in the morning til the time we go to bed Ashley argues with me. I mean she argues about everything. If I ask her to hand me the purple ball she will tell me it's blue. If I tell her for example that if she brushes her teeth like a big girl she will have time for a movie. She'll say "no I won't". By the way tooth brushing is like torture. There is always yelling and arguing about that. The same goes for getting up in the morning, cleaning up her toys, putting clothes on and just about anything else I ask her to do.

As far as NB goes, there is nothing to report there. Still in remission and we don't even go to see the oncologist until next year. I do want to find out why Ashley is having tummy pain quite often. I have mentioned it before but now I am getting to the point where I want a scan done to find out for sure. Feeling her belly might not be good enough.

One kind of surprising thing is I had to take her to the doctor to have blood work done. She is at increased risk of diabetes and high cholesterol from the medication and family history. I really was not expecting either one to show up but her cholesterol was a little high. I had not heard of that in children. But from what I read if it runs in the family even children need to be checked once in a while.

Ashley will be 5 next month. She wants everything in the world for her birthday. Going to be some hard choices to make when I go shopping. I can't beleive she will be 5 already. Next year she goes to school!! I can't beleive that. I will be a mess when she gets on the bus for the first time. Holy cow!!!! I hope she enjoys and does well in school.

Well that is about all that is going on here. Keeping busy with Ashley and me with school work. Don't ask how I am going to school full time, working and dealing with Ashley because I have no idea. I will update again soon. Ashley does not go back to the doctor for 2 months so it may not be til then.

Love

Julie n Ashley

Friday, August 25, 2006 9:03 PM CDT

Hello again,

On a roll updating again. Well we started the new medication. Ashley is on Rispedal. It is the antipsychotic. She is doing well on it so far. The wanting to die and the choking herself and others is gone. No more ugly behavior. I am greatful for that. It took two days for the doctor to decide which medication to put Ashley on because of her age. But it is looking like the right decision was made. She also said that Ashley is most likely bipolar. I have ordered a book for myself by a leading edge doctor in early onset bipolar in children. It is called The Bipolar Child by Dr D. Papolos. He even said he would see us if we could not get help here. I was very worried that Ashley was going to accidentally hurt herself or an animal. I feel fairly confident that we won't see that behavior again while on this medication. We are still dealing with the hyperactivity and lack of attention span. But that is managable without the other problems until we have the chance to deal with it too.

I do wish I knew where all of this came from. My side of the family has none of this. I have no idea about her fathers side but just knowing her father I guess tells me all I need to know. I know a lot of people think this ADHD and bipolar stuff is a bunch of bull but I'll tell you unless you live it, you don't know. It's like having a child with cancer. Others don't understand unless they go through it and no one should ever have to do that. The lack of understanding about this leaves me pretty high and dry as far as support. So I just eat, ice cream fixes a lot. At least temporarily. That and my school work help me escape even for just a bit. I've not gotten out alone in at least a year.

I had said before he was going to come over for the first time since last November and the DHS investigation against him. He never showed up. We tried again and he stood Ashley up again because he owes me money. He really acts like he does not have another daughter. It's like Ashley does not exist in his life. It's really sad. On the other hand with the black eye and oher things I am suspicious of it might be for the best. I really don't know. I do know that it hurt Ashley's feelings when her dad did not show up. She was suprisingly excited. So I don't intend to invite him over anymore. And if I do Ashley will not find out about it until he shows up. But with tention mounting over owed money I bet he never shows up.

Well that is all I have for now. Ashley goes back to the doctor again on September 1st. I will update after have the appointment. I think Dr. Walker will be pleased.

Hope everyone is well.

Julie n Ashley

Monday, August 14, 2006 8:24 PM CDT

Hello Again

Two days in a row is something else for me LOL. We had our doctor appt today. Ashley showed her true self and was unreal. She was all over the office, she touched, picked up and knocked down things in the doctors office. She took the blocks and started putting them under the bookcase. She ran out of her office and out to the waiting room 2 times and was caught by a friend of mine that came with us. He ran interference for me and it was needed. Anyway the doctor was fairly certain we are dealing with bipolar but for some reason like other doctors does not like to say it. Ashely will either be on an antiphsychotic or anti seizure medication to level her mood and then possibly an ADHD drug to finish it off. But atleast there is a light at the end of the tunnel because Ashley is miserable and I can't handle much more wihtout a break.

As much as I don't want this starting again Ashley's father is coming this weekend to visit her at the house. I might see if I can even just go to lunch. But I don't trust them alone and I don't trust them with the dog. I'd come home to something I don't want to. So I will just stay in my room while he is here. For those who don't know, ashley came home from her dad's with a black eye last thanksgiving with NO explaination and a failed DHS investigation.

Anyway I will keep this updated after we get on the new medications and get a feel for whether things will work or the hell continues.

Julie N Ashley

Sunday, August 13, 2006 6:50 PM CDT

Hello again, I know it has been a long time since I have wrote anything. A lot has happened since I last wrote. I think the last time I wrote I had said that Ashley was having a very hard time. She was diagnosed with ADHD and ODD (oppositional defiance disorder) Honestly it's been a miricle that she has not been kicked out of daycare. She has tried four medications now and none of them have worked and have caused bad side effects. Her doctor had us see a child psychiatrist and that did not go well at all either. Ashley was put on her last ADHD drug Strattera and it did nothing. Things only got worse as Ashley was found at daycare trying to choke herself and saying she wanted to die. She was doing this in front of the 2.5 year old girl Lille that goes there as well. There has been another incident like that at home as well and she was in tears telling me she wanted to die. Very very hard to deal with. I never thought a child of 4 almost 5 could ever say such a thing. Then just last week Ashley was found at daycare strangling a kitten and had to be swatted on the butt to force her to let go of the kitten. Then she asked if she had been good. Needless to say Lillie talks at home and says that ashley is mean to her of which is true and what ashley is doing so her parents are pulling her. I don't blame them one bit. One of the very concerning things is that there is no remorse or anything for what she does. Ashley is like jeckle and hyde. Up and down and when she is down she is mean and destructive. She tore the botton I guess you would call it skirting off my entertainment center yesterday. As well as gave our dog chocolate. I had the chocolate up high but she still got to it.

Things just keep getting worse and we may have to admit ashley to the hospital if we can't find a doctor to dianose her properly. Her first doctor of whom I trust and like emensly believes ashley is bipolar and I am right along with him. We just need the proper medications to get her undercontrol. I can't have her trying to choke herself or harm others or animals for that matter.

I can honestly say that I am wore out. I have never seen or heard such things from a child. As I am typing this I am having to yell at her constantly. Not to mention I am also attending school and trying to deal with this. I don't know how I am doing everything but some how I am managing. I just have no social life, which is nothing new.

As far as Neuroblastoma goes she is still NED and we don't go back til next year. Ashley is getting big. She will be five in November then next year school. I can't believe it.

Well I will update when we finally get a dianosis and medication that helps. We have an appt tomorrow morning so hopefully this will be the doctor that saves us.

I hope everyone is doing well.

Julie n Ashley

Thursday, April 20, 2006 9:52 PM CDT

Okay it's been a long time again. We stay busy and I forget to update. Last time I updated we were on our way up to see my mom. She is doing much better now. She came off the ventilator before we got there. Actually she ripped the tube out herself. That was a very rough time. Being so far away there were issues between me and other family memebers about not giving me all of the information and sugar coating what I was getting. So there were a few harsh words spoken and I am still a little hot overit. I don't think I need to be treated that way. I hope the next time is way off in the future because I have a feeling this whole communication issue will arise again.

Ashley is doing well. We go for another check up on the 9th of May. We are having major behavior issues at this time. I have written about a few of the issues we have had in the past but things are getting worse. Ashley is out of control and heading for major problems in school if things don't turn around. She is defiant, she is very hyper and gets in a lot of trouble in daycare and at home. She does not listen and taking her in public is very difficult. This combined with DHS having been involved in an incident with her father back over thanksgiving and medical bills I am just about nuts. We have chnaged pediatricians and hopefully now we will be getting some help that is much needed with behavior.

I am going to try to update pictures on here after I done with this. Hopefully I can get the ones I want on here. Ashley is so big now it's amazing. I cna't believe how fast she is changing. I will update again after she sees her new doctor and has her oncology visit.

Thanks for reading

Julie n Ashley

Thursday, February 2, 2006 9:10 AM CST

Hello everyone,

It's been a long time since I have updated. My goodness how time flies. Ashley is doing great. She is 4 and growing like a weed and is full of attitude. I can't believe how big she is. I will update the pictures on here with ones from this past Xmas.

I wanted to ask everyone that reads this to say a prayer for my mom. She is in the hospital on a ventilator. She is not in the best of health to begin with but got sick with some kind of bronchial infection that has really taken her down. Tuesday I thought we would loose her. Please pray for her full recovery. We are heading up there this weekend to see her and help out in anyway we can.

I will update from there or when we get back.

Julie

Sunday, September 25, 2005 11:09 AM CDT

Hello!!

It's been a long long time since I have updated. Time is flying!! Ash is doing good. She turns 4 November 27th. She has her Onc visit the 2nd week of October and there will be NO scans!!! I am so glad we don't have to do those anymore, only if something is felt or is not right. Saves us money!!! I still can't believe it will be 3 years November 7th NED. I don't think the worry of a relapse ever goes away though. I guess we will have to be 10 years out before I won't think of it much anymore.

Ashley is bowling now. She loves it. We both bowl on different nights in Dickson. She is having fun but getting in a lot of trouble too. She is having a hard time getting the hang of throwing her ball and coming back off the lane and watching. Unstead she will lie down inbetween the gutters while her ball rolls. She runs around like a maniac. So this is quite an experience. The child throws an 8lb ball!!! It's so funny to watch her chuck that ball down the alley. It just bounces between the bumpers LOL.

I took Ash to see Thomas the tank engine a few weeks ago as well. She just loved it. She rode the train and was just in heaven knowing that Thomas was pulling us. She kept saying that he was doing a very good job.

Not much else going on. We are both staying healthy no illnesses. She is just getting big and very sassy. We are definitly having some head butting and go arounds here. She is loaded with attitude. When I tell her no the look on her face is so funny and she stomps her foot at me. Of coarse that makes me mad when she does that and things get going. Her yelling at me really gets things going too. This too shall pass LOL.

Well I will try my best to update sooner. I will update after her Onc check up.

Thanks for reading

Julie n Ashley

Sunday, June 5, 2005 9:16 AM CDT

Hello!

Just wanted to put a short note in here. Ashley had her LAST scan a few weeks ago. We had to try 2 times to get her scan this time. She was given Versaid for the scan and that did make her "out of it" but not enough. She would not hold still and she cried and screamed so we had to for go the scan and just do her doctor visit that day. We had to come back the following week for her to be completely put out for her scan. And thank the Lord it was clean. Now all we have to do it go for Oncology check up's. Our next visit is in 6 months. There will only be a scan if something is found or appears wrong. I am so happy about that. Ashley hates those and they scare her.

Ashley is now completely potty trained. I had to put her in a different daycare for 1 week due to her regular daycare person going on vacation. The new daycare allowed her to wear big girl panties where as her regular one would not. Well that was the answer. She had one bad day and has done fantastic the rest the time. Pull-ups were just to easy to do thing in. She's had a couple of accidents but it's been 2 months or so and that's nothing.

Ashley has also become an escape artist. She now can get out of her carseat. She has done it several times now while we are driving. I have tried telling her how dangerous that is but she thinks looking out the window is more important. NOT!!!!!

Thanks for reading

Julie n Ashley

Saturday, April 23, 2005 11:25 PM CDT

Hello again,

Not been quite so long this time LOL. Things are going okay here. There are no health issues to speak of but behavior is another thing completely. Ashley might be getting kicked out of daycare. She has been trying to potty train and for a while she did perfect. She was going on the potty and doing things all by herself. well that came to an end after I rewarded her for her good job. She is now resistant and will NOT do her business in the potty. She had a very foul bowl movement at daycare which made her daycare person just about throw up. Well Ashley laughed at her. Between that and her being defiant I was told that in 3 weeks if things did not improve we would be getting kicked out. Now until that day I had not heard a bad thing about Ashley. I realize Ash laughing was not the thing to do but kicking her out?? I think the reaction was a little over stated there. Considering that Judy says she loves Ash and when I had my 2 emergency surgeries Judy let Ash spend the night because we had no one else to help. I don't know. I have threatened Ashley and she still is not doing what she should be. She is litening a little better but nothing else. We have one week left to make things work or we are gone. Between Ashley and her behavior and my medical bills that I can't pay I have just about had it.

My emergency surgeries left me over 30,000 in debt. The bad thing is I had insurance at the time. Is that not awful??? The hospital gave me some financial relief but still want more than I can pay a month. It thought I was going bankrupt and had an appt Saturday but my folks came to the rescue. I am going to be refinancing my house to do this and will be stuck in Centerville forever but atleast I will be debt free when this mess is over.

Ash has scans coming up on may 10th. I will update when I have the results.

Hope everyone is doing well.

Julie n Ashley

Saturday, February 19, 2005 7:54 AM CST

Hello,

I am so sorry it's been so long. I have tried to up date and fat fingered it and lost everything several times and got mad and never returned to update.

Things are going well here. Ashley had her Birthday and it was not as good as I would have liked. I was ill for her birthday. I got out of the hospital the day before her Birthday. She got lots of presents though. She's now a big 3 years old.

Ash had scans in November that were clean and we go back in May for more. After May scans we don't go back for a year!!!! Then after that if she is still clean there are no more scans!! I ao excited. That tells me that they are confident we will not deal with this monster again. I pray they are right.

Ash had an eventful Xmas. I was back in the hospital again in December for another emergency surgery and Ash was upset thinking there was not going to be an Xmas. My mom assured her there would be no matter what. I managed to get out of the hospital in time to travel with my folks to Michigan for the holidays and did most of my recovery up there. So Xmas did turn out better than we all expected and Ash was very happy.

Ashley is potty training now. It's a battle. She does very well at daycare, stays dry all day. At home she won't do that. I have to fight to get her on the potty. I don't understand. But we will make it to no diapers one way or another. I have promised Ashley that after she is potty trained that we will go back on the Big Red Boat again. I am hoping that is enough to get her motivated to do this. I have also bribed her with other things in the mean time. We shall see.

I have to tell you all about this. I went to get Ash from daycare yesterday and was sitting talking with Ms. Judy. While talking the little boy that she is in daycare with who is also 3 came up to me and started talking to me and while talking was feeling my breast???? I was in shock!! Judy and I laughed after he left the room. Then he came back again and decided that he wanted a look so he tried to pull my shirt down to look. I gracefully put my arm up so that he could not. All that coming from a normally very shy little boy.

Other than that not much going on. Just everyday activities. I am going to try to update the pics with new ones. If there are not new ones you'll all know it did not go well and I gave up.

I will update soon.

Love

Julie n Ashley

Saturday, September 18, 2004 11:54 AM CDT

We are back from Ash's trip. Ash had a great time. She met all the characters that she would have known
even a little. She met Mickey, Minnie, Goofy, Pluto, and Donald Duck. We have pics of all of them. She had a special meeting with
Captain Mickey along with 7 other Make-a-Wish families. That was the best.
We were able to jump to the front of lines with our make a wish hostess so
that was neat too. Ash had a blast swimming but even more so while we were
at Blue Lagoon Island. Playing in the sand and the ocean was her favorite
thing. She did not want to quit to eat lunch.

The food was good. Ash had her favorites every night along with ice cream
and cake if she wanted. Our servers were great. So was the guy that took
care of our room. He makes the bed in the morning and comes back and turns
the bed down for you at night and leaves animals made from the bath towels
in places and uses chocolate for the eyes. I have a pic of one. It was a
monkey hanging from a hanger. Real cool. Back to the food. It was a
little fancy for me. You rotate between restaurants, ours were Animators
Palate, Parrot Cay, and Tritons. Your table number, wait staff and time
of dinner are the same at each place as well as the people you sit with.
We sat with 2 other families. The one that I really liked have a little
girl Olivia. She is 6 months younger than Ash but they became fast friends
and asked for eachother during the day. Was cool to see ash eat something
that Olivia would not touch, then have Olivia's mom say "see look Ashley
eats broccoli" and watch Olivia start eating hers just because Ash was.
They asked to borrow Ash LOLOL. Did you know that you can make Mickey
Mouse out of ketchup? Well that is what was done every night for the kids
at our table so they can dunk their fries in it. Pretty cool!!!!

We went to Charleston SC for our first excursion and then to Blue Lagoon
Island in the Bahama's. The first one was not for kids. We went on a horse
and buggy ride through historical Charleston. Ash slept through it. But as
I said the island was her favorite. She threw more wet sand in the air, in
the water and on me than I can shake a stick at. She had sand in her butt,
her hair and every where else you can possibly get sand. She ran up and
down the shore in the water falling one time in water that was to deep for
her to do anything but stand in and went under. I was right there with her
so I was able to reach out and grab her up before she inhaled to much water.
That did not slow her down though. She slept on the way back on the Ferry.

Ash stayed busy from morning till night. She had NO naps and was up till at
least 11pm each night. Most of it spent running around the decks or swimming. I can't begin to say the fun we had. She cried when I got her dressed to leave the stateroom and go eat to leave the ship.

I will scan and put some pics on here just as soon as I can.

Love

Julie n Ashley

Monday, September 6, 2004 12:36 AM CDT

Hello!!

Gosh it's benn a long time. I did not realize just how long it's been. Ash is doing great. She had her dentist appt and had her caps put on. She really did good for that. She took longer than normal to come out of the sleepy meds but other than that she was perfect.

Aunt Amy came this weekend and we had a lot of fun. Ash was a pip for Amy this time. Not listening and things like that. She had a real good time.

Well this week is the big week. Ash does not know it but she leaves on her Disney Cruise this coming weekend. We leave for Memphis on Friday night after work and they will throw a party for her on Saturday morning at 9:45. Then we hop on a plane for Florida. That is providing the weather cooperates. Right now I am just waiting for things to get cancelled.

Well gotta run for now. I will write again after we get home from our trip. There will be lots of pics that I can post on here.

Love

Julie n Ashley

Friday, July 30, 2004 11:51 PM CDT

Hello!

I am sorry it's taken so long to update on Ashley's scan results. I had them quickly but been busy and lost track of time. Ashley is still NED!!! Clean scans!! November 7th will be 2 years in remission and November 9th is our next scan.

The scan was eventfull. We did not have the same nurse as normal and things get out of whack. While the nurses we did have were wonderful to her and myself it just does not go as smooth. Ash was given her drugs to make her relax and sleepy the name of the drug escapes me right now. Well it makes her incredibly mad and angry when she comes down if it's not done right. So she is given the drug after being given some time to play. By the time the IV was started and the drug given CT had an emergency and we had to wait. Well the meds wore off and she was pissed. That kid is STRONG!! She screamed at the top of her lungs and cried and kicked it was awful. She had to be given more right before the scan to calm her again. After that she was okay. Clinic went well, the wait was very long as usual. We talked with the social worker for a while regarding some behavioral issues Ashley is having while we waited to see Dr. Rhodes. It was a long day for sure.

Ashley's behavior issues are when she comes home from dads. I can't begin to explain here what goes on other than to say it's awful. She is okay for about 30 minutes after coming home then she is full of throwing thing, temper tantrums and we are not talking little ones. She is full blown screaming, throwing herself around the whole thing. The last time it lasted for 2 hours straight. I thought I was going to loose my mind. The funny thing is that I video taped it to show her dad what I was going through and for the docs to see. Ashley is now watching it and thinking it's funny. I got news for her it's NOT funny. She's also taken to biting me and just not throwing things but throwing them at me. Are these things just the terrible two's or is this a real issue??? I don't know but I wish it would stop.

Ash is having dental work done in a few weeks. She has to have to crowns. This partially being blamed on the chemo she had. She does not like her teeth being brushed but I think after she goes through this she just might change her mind.

OHHH I have to tell this too. Ashley does not like having her hair brushed. Well Debbie who is the daughter of her daycare provider offered Ash a dollar if she could do her hair for her. So Ashley loving money yet not fully understanding it says sure. So today we go to spend that dollar on M & M's. She takes her candy to the counter and sets it up there. She hands her dollar to the cashier after my prompting her and gets her change back. While I am paying for my stuff Ash looks at the cashier and says "can I have my dollar back please". The cashier did not hear her at first but when I repeated it for him he laughed. It was so cute. She totally does not understand. It's the first time I have let her spend her money on anything.

Well that is all for now. I will update again when theres something to report.

Love

Julie n Ashley

Sunday, July 11, 2004 10:03 AM CDT

Hello again

We are back from Michigan. The drive was okay both ways. Ash was a little upset towards the end but considering it's an 11 hour ride who can blame her. We had a great time up there. We were at Grandpa Gar's on Sunday night. Ash got a new outfit. Real cute but the shorts are to big for her right now. She was outside playing in the water and mud and got real dirty. Had to go home in a shirt and diaper. We had breakfast with Aunt Barb, Aunt Jean and Grandma on Tuesday morning, Lunch with Aunt Kay Wednesday, at grandpa Gar's house Wednesday night for dinner and lots in between. While at Grandpa Gar's Wednesday Ash got a new ball with blue on it. She had a great time rolling it back and forth with Grandpa. Aunt Amy took her to the park 2 days and out for ice cream. It all went by way to fast.

Ashley has started seriously potty training. She has had one accident but so far so good. I told her that pooping in the potty will get her one dollar and a toy from the dollar store. So she is working very hard on that one. But she is going to drive me NUTS!! She does a good job sitting but regardless of whether she goes or not she has to go get toilet paper and put it in the toilet and flush. She is using her little potty. Then two minutes after she gets up she says she has to go again. Then we go through the same thing. If nothing comes then she still has to go and get the paper and flush.

She has a dentist appt next month. She needs two caps. YIKES!!! Poor kid. She also has her eye appt in August too. Her scans are in a week and a half and I will let all know how they go.

That's it for now. There are new pics to view. I'll update again soon. Amost forgot, Ashley's trip is in September!!!

Love

Julie n Ashley

Friday, July 2, 2004 2:51 PM CDT

Hello everyone,

Sorry it's been so long but we've been busy and I've not thought of updating. Things are going very well. Ashley does not know this but she got her Make-A-Wish. She is going on a disney cruise in August or early September. I tried to give her all options that would be appropriate for her and she chose that. I tried so hard to make it clear that this was whatever she wanted or where ever she wanted to go. Showed her pics and everything. So I am excited for her and when she finds out she will be thrilled.

We are getting ready to leave for Grandma's tonight. Ash is real happy about that. She does a real good job in the car so that does help. I got her a DVD player for the car so she will have some movies to watch while we drive. We are leaving at 1am. Hopefully I can keep my diet coke consumption down so that we are not stopping hourly for potty breaks. For those of you who know me and know how much I drink you know how hard that will be.

Health wise things are real good. We have scans again on July 18th. I will let all know how they go.

With love

Julie n Ashley

Saturday, May 22, 2004 10:51 AM CDT

Hello again,

Not much to report here, Ash is doing well. She was sick a couple weeks ago. I got a call from Ms Judy who watches her that Ash was not doing well and had quite a fever. I went to her and she was just laying there. Her fever was around 104 or so. I brough tylenol with me and got it down to 102 which after a while had her acting better. I took her to the doctor and her throat was all red. So they did a strep test on her which thank goodness was normal. By the next day Ash was acting like herself and went to daycare for 1/2 day.

Other than that it's the normal stuff. Our cat is about to leave us. Ash won't leave him alone and it torchering that poor thing. He just might pack up and leave. I spend more time after her for harrassing him than I would like to talk about. She's at it right now.

I will try to get more pics. I have some on CD and will try to get them on this page. They might be to large. I have really slowed down on the pictures and I am sure will regret it later.

That's about all for now. I try to update sooner. Please check out chemomum's website it's a real good site for information http://www.geocities.com/chemomum.

Love

Julie n Ashley

Saturday, May 1, 2004 11:58 PM CDT

Hello all!!

Things have been pretty good here. Ashley had her grandparents here for a week. She loved it. She loves to hangout with G'pa henry. I'll tell you when he says something to her she listens!!! It was real nice having them here to back me up when I told her no. She is busy testing me big time. She hits bigger than ever and has now started offering beer to drink LOL. I don't know where she got that. I dont have any nor do I ever mention it. And she does not watch normal TV. It's all her videos so I know what she is viewing.

She's been going with her dad for weekends now. She is doing well with that. She did however tell him loud and clear and in these exact words that she did not like going with him. I have no idea why, she wont tell me and I don't know if she knows. I have a feeling it's just the male voice and that she feels like she has to listen to him.

Medically things are good. She started a runny nose Friday but I am hoping it allergies and not a bad cold coming on. We have had it easy through the winter and I want to keep it going. She was acting fine so hopefully it's nothing. We don't have scans again til July so until then I don't think there will be any medical news. Just behaviour issues LOLOL.

Ashley has taken to embarrassing me. Which I know is normal all kids do this stuff. We were in a restaurant eating and a man with white hair and long white beard was sitting behind us. Ash turned around took one look at him and yelled SANTA CLAUS!!!!! Then the other day in the Dollar store a lady was going to talk to Ash until loud and clear Ash says YOUR MEAN!!! She said it several times to this lady. I was so embarrassed. I had a talk with Ash but she won't remember.

Well that is all for now. I'll try to get here and update more often. With nothing going on medically I kinda forget.

Love

Julie n Ashley

Wednesday, March 31, 2004 10:08 AM CST

Hi again,

Ash is doing real good. She had her visit with Dr Rhodes and all is fine. Her scans as I had mentioned before were clean so we are good to go for another 4 months.

I aplogize that this update is so late. I have been sick for almost a month now. Ashley got a minor cold just as I was getting better and got me sick again. So I have not been doing much except things that had to be done.

Ash had her Aunt Amy here last 2 weeks ago and then again last weekend. They had a great time together. They went to the park and had happy meals for lunch. Now Ash has her Grandma and Gpa coming in one week. I am very exicted about that too!

Well Ashley caught me off guard the other day and said a very bad word. I dont know where she got it and I wont type it here but i am really hoping that she does not say it again. She uses it when I tell her no on something. The last time it was used by her I was driving so I could not do anything about it. She got lucky!!!!!!

I'll update more later. Can't stay on long at work. I hope everyone is doing well.

Julie N Ashley

Monday, February 23, 2004 11:44 AM CST

UPDATE Ashley had her scans and did very well. She hardly flinched with the IV poke and once she had her versaid she did great for the scan. I found out late last night that she is still NED!!!!!!! YEAH!!!!!

Hello again,

I apologize that this update is so late. We have been busy just living. It will be short as I am at work right now. We are doing great. Ash has scans on March 1st so another update with results will be coming. Ash has stayed over with her dad two times now and is doing wonderful. She seems to really enjoy it.

We are having problems with diaper changes. When Ash has a bowel movement she will not let me clean her. It is a big production of her crying and saying she's in trouble, her tightening up so much that I literally can't clean her without forcing things and her wiggling away from me. Not sure if this is a phase or what. I have called her doc and was told to look to see if there were any problems but everything looks normal. Ash has said it hurts so I think a doc visit might be in order, or atleast when we see Dr Rhodes let her look. I'd hate to think something is wrong. If anyones heard of this let me know. It's hard!!

Well that is about all. I will write again on the 1st or 2nd with results from scans. I know they will be clean as a whistle!!!!

Love
Julie n Ashley

Sunday, February 1, 2004 11:50 AM CST

Hello again,

Things are still moving right along here. Ashley had her big day and night with daddy. Sounds like things went real good. Ashley awoke at 2am and said "daddy, it's time to get up" and daddy told her no it's not go back to sleep LOL!
And bathtime went well until hair washing came about. I don't do it in the bath I do it at the kitchen sink and he did not know that. She threw a fit on him LOL. Other than that it was a big hit!!

Ashley is over her cold. It turned into another bad cough though not as bad as it has been in the past. Temper tantrums and NO's and the hitting are wearing very thin. I mean to tell ya!! But I have found the magic thing that makes her just loose it. And it's the same thing that got me as a child, going to bed early!! She HATES it and I use it!!

Well there is not much more going on. We are doing real good here. I hope the same goes for those who read this.

Love

Julie n Ashley

Monday, January 19, 2004 12:14 AM CST

Hello again,

This will be short as there is not much to write about. We are doing well. Ash had a big morning today. This was the first time she was in training pants. The real cloth ones. And there was not an accident. I had her on the potty one time but there was nothing. Later she wanted them off and a diaper back on. But hey that is a great start.

Ash has had a runny nose again. So far today and most of yesterday it's not run. So I am hoping that it's gone and we don't get sick again.

Ashley has another big time coming up a week from this friday. She will be picked up by her dad on friday night right after we get home from work and she will stay the night with her dad. Her first time away from home over night with anyone. So we will see how it goes. I might have a night out for myself 2 times a month!!!! I am very excited both for her and me!!! Now to find a date LOLOLOL.

Well I just put ash down for her nap. A cranky very cranky girl I might add. She was full of it this morning. With hitting and temper tantrums and yelling at me, whew lucky to come out of that one unscaved LOL.

I will update again soon. I hope everyone is doing well. Time for me to get my things done and hope for a happy girl when she wakes up.

Love

Julie n Ashley

Tuesday, December 30, 2003 1:33 PM CST

Hello!!

I do apologize for the long delay in updating. We have been busy and there's not been a whole lot going on. I hope everyone had a wonderful Xmas! We sure did. We went to Michigan for Christmas. Ashley did very well on the ride. She would not let me stop to rest at all. It was go go go to grandma's because she was READY!! So we arrived at 3:30am. I was so tired I was crosseyed.

Ashley got so much. She got a Firetruck from Santa. She enjoyed it very much. It was unwrapped under the tree when she came downstairs. The look on her face was priceless. That held her over until Aunt Amy could get there to open the rest of the presents. Ashley got new clothes a baby doll, a stuffed Snowman, a Harmonica (lucky me!) and so much more. Christmas eve we were at my dad's house and Ashley got a Harley Davidson book. The story is not something she is really interested in but boy does she love the sounds that it makes and looking at the pictures. She got another ABC radio from Leapfrog from Gpa. She got that same thing from her Aunt for her Bday. So when she opened it she looked at it then looked around the room. She had her other radio with her but she put it in the laundry room. She said "my radio"? And looked at everyone like why in the world did you take and wrap my radio for me??? I got up and got her other one for her and when she saw that she had 2 radio's now, she was on top of the world!!! She thought she was really special having 2 of them and she showed everyone.

I took pics there but only 3 and out of that 1 turned out. The rest were dark. Hopefully I will have pics from my sister emailed to me so that I can post them on here.

Health wise Ash is doing real good. Everyone up North was getting sick when we were there so we got out just in time. Ash had a cold a week before we left and I don't want her getting another one. Nor can I afford either of us to get so sick I miss work. Not getting paid while out is a major issue. So now we are staying away from anyone who is remotly ill.

Monday was Ashley's first day back at daycare at Granny Betty's house. Ryan came in hauling his new Fire truck that he got for Xmas. It is just like Ashley's. Well that started world war III. Ashley went over to him and said MINE!! She tried to take it away from him not understanding that it is not her truck. So after all of the crying and comotion it was taken away from both of them for a while. Just could not convince Ash that her truck was at home. He does not let anyone play with his toys LOL. I don't take her toys over there because I know that they would need to be shared and I know Ash will not share either. So to avoid fights I leave all her things at home. But it looks like I need to have her take a toy to play with and then they will each have their own toy that the other can not touch. YEAH RIGHT! LOL.

Well I am still trying to unpack which I hate doing. But this time suitcases are going to be unpacked quickly and no sit for weeks before they are put up.

I promise not to take so long in updating next time. I hope all is well and that everyone has a wonderful and joyous New Year.

Love

Julie n Ashley

Saturday, December 6, 2003 0:13 AM CST

Hi

Well Ash had her scans. She did a great job for them this time and there were no bad experiences. She was not able to go without some kind of seditive but just a little versaid was enough to make her drunk and not care. She did great!! And best of all her scans are again CLEAN!!

Ash also had her pediatric appt and got a clean bill of health there too. I was kind of balled out for giving her to much juice but oh well. I have cut her way back and hopefully there wont be reprocusions with her having cavities.

Well along with the good news there is also not so good news. This has to do with my mom. Seems as though she has more blockages in her heart. She has had 2 bypass surguries since I was 17. They are going to do a cathederization on Tuesday and see if they can find and fix the problems. Please pray for her. Pray that they find small things that they can take care of right then and there with no surgeries. I know my mom does not want to go through open heart a 3rd time and has stated that she won't but is now waivering on that statement. I'll admit I am a mama's girl and I am very close to her. Not sure I could deal with things without her. I know I say that and I could deal with things I just don't want to. She has a grandbaby to watch grow for many more years.

Well I had better go. It's late and we have a busy day tomorrow. I will update again soon.

Julie n Ashley

Thursday, November 27, 2003 9:11 PM CST

Hello everyone!!

I hope everyone had a wonderful Thanksgiving! We sure did. We spent Thanksgiving with Debbie Little and family. What a wonderful day it was. It was so good to meet them finally. Ash got to play and boy did she play. She was right in there with the boys running and whooping it up. She was a little shy at first but once she overcame her shyness she was off and running. I can't thank Debbie and Jeff enough for having us. Being away from family on holdays is not something I am used to. Nor do I like it. Okay okay I admit it, I don't like being away from family at any time. But that is how it is. Ashley got a baby doll from Debbie, Jeff, Cameron and Caleb which she loves. She got a bear from Debbie's mom and a little people toy from Debbie's sister. They had B'day cake and all. What a blessing they all are.

Ash is doing good. She has had a runny nose but that's about all. I think the change in weather got her as well as me. Ash has had quite a birthday this year. It has stretched out all week long it seems. Today the 27th is her B'day but she's been getting gifts since Monday. I think she thinks her b'day is a week long LOLOL. But she is happy and loves all of her new things, okay she does not like clothes but what kid does?????? She gave those packages that were soft to me to open while she moved on to other gifts that were what she thought to be toys. Smart child!!!

Ash has her scans this week (Dec 3rd) so I will update again when we have results from those. I want to say I am confident that they will be clear but I don't want to be to cocky. But deep down I know they will be clean scans.

Happy Thanksgiving to all!! Thank you to all who check on us and leave messages. I do check every day to see if there are new messages and they always put a smile on my face. I print them for Ash's grandma as well as the journal entries so she can read them.

Love

Julie n Ashley

Tuesday, November 18, 2003 12:57 AM CST

Hi!!

Just wanted to give a quick update. Things are going well. We have scans coming up soon but I am not as nervous this time.

Ash spent her first day away from me with her dad. She met her grandparents on his side and saw her sisters and brother again all together in one place. She came home with a runny nose, no nap and was just miserable. But she says she had fun and I think that is great!!! I tried to put her down early that night but she only stayed asleep for about an hour before crying. So I got her up and tried to wipe her nose and boy did she get mad. She started crying and got so upset that she puked on herself and me. Mostly me!! We tried bed again and it did not work so I let her stay up. Once she was up for a while she was ready to play. We had Jim over and we played ball in the kitchen til 11pm. Then she was willing to go to bed and she stayed there all night. Thank goodness she is back to normal now. No more runny nose.

Ashley's Birthday is Thanksgiving day!! It will just be the two of us. Everyone we know will be gone for the holiday. I hate spending the holidays here. I can't say just how much I HATE IT!!!!! This is the first TG that I have spent here in TN and I am dreading it. I am used to family and big dinner. We have no where to go down here so we will be home just the two of us for McDonald's for dinner Thanksgiving night. OH BOY!!!!! How thrilled am I about that dinner LOL. Though Ash will enjoy and I that is what matters. I just thank God we will be home for Xmas. So please pray for clean scans and NO SNOW for Xmas so we can drive home!!!

Ok enough of my whining.

I will let everyone know what happens with scans. They are Dec 3rd.

Julie n Ashley

Sunday, November 9, 2003 9:35 PM CST

Hello

Well our visit with my mom and stepdad was a big sucess. Ashley had a great time. She was home everyday with them while I worked. Seems as though G'pa and her are the best of friends. She does not want him out of her site or she starts asking where he is. She also does not like to have him mad her her, which he is not he just speaks sternly to her when she needs it. She thinks he is mad and will get cute with him to make up for it. She also started telling us "cry!!" when we tell her no. Like she is threatening us. It has not gone over well either. She gets told that we don't care if she cries. That stops it. But I am not sure that is the right response or not. I do care if she cries if she is hurt or something but not just being threatened because I have told her no.

Ash got some of her birthday gifts to open the night they arrived. She got a drawing toy that is like a magna-doodle but a less expensive one. She also got a Dora book and a leap frog toy appropriate for her age. It's teaching her the ABC's. She does pretty good but she does not know what the letters look like so it's a challenge for her. She can sing the ABC's pretty good though. She got some new clothes as well.

We were out on Saturday and went to walmart and I got Ash a new pair of tennis shoes and also a cute pair of black booties. What Ash does not know is her Aunt Amy has a pair of tennis shoes that light up when she walks!! She will get those at Xmas time.

So everything was a big hit. I was real sorry to see them go as I always am. It's always so quiet here and feels so empty when my folks leave. Makes me want to go home so bad for the first few days. So I've been a little down and Ash has been asking where grandma and grandpa are.

We are going home for Xmas again this year. We were going to fly up but man it's to much money. I can't afford 400 dollars for us to fly. Not with Xmas shopping and her B'day in a couple of weeks. So it's looking like we will drive. That should be fun!! But being there is very important to me. I have not missed a single Xmas in almost 6 years that I have been here and I won't stop now.

Well that is about all from here. We are still awaiting scans. Those are Dec 3rd.

Our prayers go out to all that need them.

Love

Julie n Ashley

Monday, November 3, 2003 12:27 AM CST

Hello all,

Things are going well here. Ash is doing good. Staying in trouble as a 2 year old does. She has her grandparents coming tomorrow for almost a week so that will be nice. They are bringing all of her B-day gifts down with them!! Ash will get to open the ones from Gma and Gpa while they are there, the rest have to be opened on her b-day the 27th.

Ashley's scans have been rescheduled. It was to soon to have them and to much time from work. So now she has her scans on Dec 3rd along with her 2 year check up.

Does anyone know how to get a 2 year old to stop playing with their food?? I don't mind if she eats with her fingers but I don't like it being sqished and thrown and she's not listening to me. And boy does that get her in trouble at daycare!!! I have a couple of pics from dinner the other night I need to put on here. What a mess!!!!

Anyway, I hope everyone is doing well. My prayers go out to all. And thank you for signing our guestbook. It means a lot to us. Hopefully someday Ash will read this herself.

Love

Julie n Ash

Sunday, October 26, 2003 10:55 AM CST

Hi Again,

Well Ashley's scans will be rescheduled. I have to call I guess no one has called me about rescheduling. I am shooting for December 3rd. That is the same day as her ped check up. Make a day of things I guess. Less time missed at work. According to her touchy feeling exam she is doing fine. No lumps or bumps have been felt. Her blood work came back good too. Also due to Ash's age and the first couple years being critical for the possible return of NB we will go every 4 months for scans. Which is fair. We sure want to catch any return very quickly.

Other than that things are good. We are heading out to visit a friend if I ever make it to the shower. So I better get moving here before Ash gets mad that she is stuck in her playpen til I am done.

Love

Julie n Ashley

Tuesday, October 21, 2003 8:47 PM CDT

Hello all!

Well we went for scans today only to find that it had not been scheduled. We did see the doc today and everything "feels" okay. Ash did have blood drawn and had to be poked 2 times to get it. She keeps telling me "owie, cry. So she definitly remember and would not let me take off her band aides. I was told that Ashley's scans were done not that long ago so we could wait a while, are you ready for this they are on November 4th. Boy we sure waited a long time for that. So I am going to see about changing it. That is stupid. And we won't be going every 6 months either. We will be going every 4 months after this next one for 1 year then after that every 6 months. I am going to find out why. Seems like if there is nothing going on and things have been clean why not every 6 months????

Other than that Ash is doing well. She is growing so fast. She talks so much it's unreal. I can't believe that in just over a month that she will be 2 years old.

Well there is not much else going on around here. I will update with scan results as soon as we have them.

Love
Julie n Ashley

Thursday, October 9, 2003 11:05 AM CDT

Hello everyone,

We had a great trip home. Dad's wedding was real nice and Ashley had a good time. She danced her little heart out at the reception. Dad and Linda are in Florida for their honeymoon.

Medically things are going well. Ashley's runny nose has finally gone away and she is feeling good. She has her scans on October 21st so I am praying that they show nothing and that we can start going every 6 months. That will be sooo cool.

We are busy doing some new things to our house. We are getting a deck out back, new doors front and back and also new kitchen and bathroom floors. I keep telling Ash what we are going to do and she keeps telling me NO. I don't know about her but I will really enjoy these changes. I am not going to mess with Ashley's room until she is older. I know she will want a change and I'll just wait for her to decide what she wants in there before spending any money.

I am still looking for more TN families who are interested in trying to help get a Children's Catastrophic Fund here in TN. If your interested please email me personally. I really think this will be a big benefit to families who have to fight this horrible monster. I sure do wish cancer could be eliminated so that no child or adult would ever have to suffer.

Well that is about all for now. I'll update again after Ash has her scans and let you all know how they go. Sooner if anything new happens. I'll post some new pics in the near future too.

Love

Julie n Ash

Saturday, September 27, 2003 0:13 AM CDT

Hello everyone,

Sorry it's been a while. I just noticed the page being viewed so I thought I would update. Ashley is doing great. She's had a runny nose which at first was a real mess. She was plugged up and could not sleep. I tried her on Sudefed and that did nothing for her so I had her stay up with me til it was time for another dose and gave her what I know works for her. It's been almost 10 days now and she goes about every other day with her nose running.

We are heading to Michigan for a few days next week. My dad is getting remarried and we want to be there. I think he is going to be very happy. Hopefully Ash behaves at the wedding and the reception.

Ashley's scans are about 3 weeks away and while I am always nervous I don't seem to be as nervous this time around. Not sure why that is. Oh and I am working on getting TN a Catastrophic Children's fund to help pay medical expenses for bills that are not covered by insurance and also for those that are uninsured. The help is NOT income based so it will be easier to get. Everything is based on poverty level which is so low it's pathetic. We need this fund here in TN so many of us could use this help and unfortunatly so many more will. So if anyone living in TN wants to help me get this rolling please email me. I have been in touch with the director of NJ's program and she sent me their anual report which gives me a lot of information on what I need to do. I need people to write to state officials and push this idea. Of coarse the funding for it will be an issue but where there's a will there's a way.

Well that is about all I have for now. I'll update again after we get home.

Love

Mom and Ashley

Friday, September 12, 2003 9:58 PM CDT

Hello everyone,

Sorry it's been a while since I updated but there is not much going on around here. Ashley is doing very well. Still no eye trouble and that is a good thing. Now if I can just get her to stop throwing her food and spitting her drinks all over the place things would be as near perfect as they can get. OHHHH and one more thing abolish the word NO from her vocabulary too.

I've been reading others websites and found that 2 more beautiful children have become angels. I read their stories from beginning to end and cry and feel so lucky that my Ashley is healthy and in remission. Makes me wonder why I care if she throws food, is it really such a big deal in the whole scheme of things?? I guess I am still having a little trouble dealing with what happened to Ash. We go back for scans October 21st which I know will be here before I know it. Then just a week or so after that will mark 1 year since Ashley had chemo. November 7th will mark the day her Hickman cath came out and she was in remission. I can't believe how fast the year has flown by. Right around this time last year my folks were here for her last chemo and we were delayed two weeks due to her counts not recovering. Came real close to another bone marrow aspiration to check things out. And Ash was just learning to walk then too. She took her first steps about this time last year

Ok enough of that. Tonight I took Ash to McDonalds on the way back from the bank in Fairview and got a Hot Fudge Brownie sundae with her. I was feeding it to her and a couple of bites later she claimed she was done leaving me to eat it, which I really don't need. But when I turned the spoon over to her she wanted more more more and to feed me as well. I must say she did a great job of feeding me my bites of ice cream.

Ash got her first haircut. It was just her bangs that got cut. All the way home she told me that her hair was broke LOLOLOL. I told her that it was not broke that she had it cut. She still tells people it's broke about half the time, the rest of the time she puts her hand on her head and says haircut. It was soooo cute.

As soon as I can get my scanner hooked back up again I will get new pics of her on here. I had her pics taken and will share them soon. I just don't have room to hook up the scanner :(.

Well I will update again soon. Time to get to bed.

With Love

Ashley and Mom

Wednesday, September 3, 2003 8:46 AM CDT

Hello everyone,

It's been a while since I have updated but there's not a whole lot to update right now. Ashley is doing well. There have been no more flare up's of her eye. A letter was just rec'd from the eye doc calling the left eye a capillary hemangioma. So I guess that is what we will go with. It's still a malformation and we will still watch it and hope it never causes any problems.

My sister was down to see us for the Holiday weekend. Ashley is Amy's little Monkey. If you ask Ash what Aunt Amy calls her she says Monkey. It's so cute, they are best buds. Ash got 2 new video's from Amy as well as a new outfit that has blue on it and a plate, bowl and fork/spoon that have Blue from Blue's Clues on it. I let her eat on the plate last night and she was pushing her food off the plate onto the table so that she could see Blue. What a mess LOL. Oh well I guess it could be worse. While we were in Walmart looking for things for Amy to buy Ashley we would pick things up and show them to Ashley and almost every time we heard "want it". Go figure!!! We stayed busy during her visit here going to walmart, out to eat and running around.

Ashley seems to have gained a fear of heights. But what is weird is that it's only on things that would even closely resemble and CT Scan table. Such as the diaper changing stations. She freaks out when I put her up there. All she can say is "fall, fall, up, up". I think it was the last scan and her freaking out that has done this.

We won't (hopefully) have any new medical news until the end of October when she goes for her CT. Then the end of November when she has her 2 year check up. Wow my baby is going to be 2 years old!!!!! Where has the time gone. Her birth seems like yesterday as does her being DX with cancer. Unreal!!

Well I am at work where there is no work to be done, so I'll get moving for now. I'll post again when there is more news of any kind I guess. I'll also try to update the pics soon too.

Love

Julie N Ashley :)

Wednesday, August 20, 2003 9:13 PM CDT

Hello everyone.

Just wanted to update you all on Ashley's eye visit today. I took pictures of her eye when it was swollen and a mess and showed them to the doctor. He noticed a lot more than I did. First of all Ashley's pupils are not the same and her eyelid still is a tad droopy and her bottom lid also has a problem. This is on the same side as her tumor was. We were told that she has Horner's Syndrome. She will be watched to make sure it does not cause vision problems. Now for the other eye which is why we went to begin with. I was told this is a capillary malformation. I found a website on these and emailed it to her Onc Dr. It says in this page that "A cpillary malformation that involves the skin on the eyelids can be associated with elevated pressure within the eye and may be indicative of a more serious condition." This is basically what a capillary malformation is "Although the number of blood vessels in a capillary malformation are normal, the diameter of the affected vessels is much larger than that in normal vessels; this enlargement results in increased blood flow. Since the vessels are close to the surface, this increased flow gives the skin it's pink to purple appearance. As your child grows, the affected blood vessels will continue to enlarge and thicken, causing the color of the lesion to darken." The eye doc said that Ashley's is very small and not to worry. But now that we have read this I am not sure it's nothing to worry about. IT definitly needs monitoring. I am to check with her pediatrician next time we see her. I may make an appt to see her sooner just to see what she says.

So now we have two new things. Is life not grand??? Anyway atleast they are nothing real serious or life threatening. Just watch and make sure things stay okay.

Ash did real good for the eye appt. She was awesome. She let the look most of the time testing her eyes. She shocked them I think being able to name things that she saw on a screen. The only one that she did not get was the birthday cake with candles. The rest she said by name very clearly. I was impressed too. The only thing she got upset with was the eyedrops to dialate her eyes. As of now her vision is normal. Her running into things is being klutzy, just like her mom!!!!!! You'd all feel sorry for her if you knew what kind of klutz I used to be.

Other than that things are well here. Ash has been going swimming at the local Day's Inn. It's inexpensive and we can stay as long as we want. She has a float but does not want to sit in it. She insists that I put her down and does not understand that the water is way to deep for her LOL. Then she gets mad and we have to leave due to her squawling. So our visits are short but atleast she is getting the experience.

I'll update again when I hear more. The eye doc will be sending a letter to Dr. Rhodes so I should know soon.

Love

Julie N Ashley

Friday, August 8, 2003 9:17 PM CDT

Hello!!

Well we have the news on Ashley's head CT and it is clean!!! That is good news. Her eye is back to purple and is swollen. It was a suggestion that Ashley might have a deep hemangioma in her eye. That would not show up on the CT because it would be small. Ash does have a strawberry hemangioma on her side that was very prominant when she was a baby and is now shrinking. But it will be 8 or more years before the one on her side is gone. That was also what her pediatrician thought was in her neck at first before Ashley's NB diagnosis. So now we wait for the eye doctor appt at Vandy on the 20th. I've never been to the Medical Arts building so this should be fun to find. Hopefully it's easy.

After Ashley's scan I said that I had taken her to daycare and hoped she had eaten and slept. She had done neither. She was just out of sorts all day long. Though over all she did very well with out her nap. She is still not eating well either. Today she ate some breakfast, next to no lunch and the same goes for dinner. I know the girl won't starve but it still bugs me when she won't eat.

That's about it for now. I'll update again soon.

Love
Julie n Ashley

Thursday, August 7, 2003 2:49 PM CDT

Hi Again

Ash had her Head CT today. The past couple times Ash has had versaid before she goes to the CT table though she has done the scan awake before as well. But this time after her IV we took her in before medicating her and laid her down and she freaked out. She was crying so she got her meds through her IV. Well then she started choking and gagging so we sat her up. She then started jerking. By now she is scared and holding on to my neck and would not let go. I had to pry her arms off me for the Scan to begin. I was terrified. I hate seeing that stuff. Even though it turned out to be no big deal at all, me not being a doc would not know this so I was the only one panicked. I thought something was really going wrong. The jerking stayed with her til the drug was out of her system. While she was in the recovery Nurse Debbie was holding her in a rocking chair. Ash was all cuddled in with Debbie. She had her IV removed while sitting there. I believe it was after the IV was gone that ash said "hug". She wanted Debbie to hug her!! It was so cute. She also got mad again. And that continued all the way home. She hardly ate any breakfast at "Donalds" after her scan. I ate more of hers than she did. The other real cool thing was that Dr Rhodes was with us the whole time. Since we missed her at our clinic appt she met us in the waiting area and was there the whole time!!! That was awesome!!!!!!

She went to daycare today after I knew she would be okay. Hopefully she is getting a nice nap in!!!! She surely needed it!!!

We now have an eye doctor appt. She goes back to Vandy on Aug 20th for that.

I will let all know what the results of todays scan is. I am hoping for some news later today. Even if it's preliminary.

Lots of love

Julie n Ashley

Sunday, August 3, 2003 10:54 AM CDT

Hello again,

I got word that we are doing a full head CT on Ashley to make sure there is nothing wrong. We are doing it this Thursday. Then she will have an eye doctor appt. Her eye still has a purple spot on it almost in the middle of her eyelid. Other than that we are doing fine.

We are getting ready to head to the bank. I'll update again when we have the results of the Head CT.

Love

Julie n Ashley

Thursday, July 31, 2003 8:11 AM CDT

Hello again,

Well it now sounds as if they do scan her head. The radiology report says that her orbits look normal and there are other parts that they say look normal. So it does not sound as though we are dealing with NB when it comes to her eyes. So her doc is checking to see if the current scan will be good enough or if we need a new one. She is also going to have the doc read the scan again with the eye problem being his main concern. We might have to go back in a couple weeks for a check up and to see an eye doc. I do believe either way an eye doc aapt will happen.

I'll let you all know when I hear more news. Hoping it will be today.

Love

Julie n Ashley

Wednesday, July 30, 2003 12:34 AM CDT

Hello!!!

I just now got word from Ashley's doctor. Neck, Chest, Abdomin and Pelvis are CLEAN!!!!!!!! The Scan report mentions Ashley's head but I don't know if it's because I brought it up or if they saw something?? I doubt that though. It was probably because I brought it up. It's good to hear those words CLEAN SCANS!!!!!

I will keep everyone posted on what happens with the head CT. I know there will by an eye doc appt in Ashley future but don't know if the CT will be needed or not. We will see!!

Have a wonderful day!!

Julie n Ashley

Tuesday, July 29, 2003 5:13 AM CDT

Update on Scans today! Well I was hoping for something new as far as results today but we don't have any. Ash did a good job for the scans. Things got a little rough afterwards though. First off we were told to be there at 8am. We were not seen til well after 9am. Then after her scan and her going to recovery for a short time to make sure that she was okay from the drugs we head up to see her doctor who was not in today :(. We missed her. Anyway, we sit in the waiting room for 90 minutes waiting with nothing. Not even being weighed. Then we get weighed and wait more for a room. By then ashley is getting mad and upset and hungry. I don't blame her a bit I was pretty pissed myself. What the heck are appointments for????? I don't think they know. Anyway we saw the doc, had blood drawn for counts and then we saw one more doctor. We then headed to "Donalds" as Ashley calls it and ate lunch. I was irritated and hungry and Ash was playing more than eating and throwing her food. Made for an interesting a stressful lunch. Then we hauled ourselves up to the 5th floor again to wait on an Echocardiogram. Now that was a timely thing. About 15 min and we were told to head down the hall they were ready for us.

We are going to have to go back again for another scan. Little did I know that Ashley's head is not included on the scans. And it could have been included this time but there was no communication so we go back again. I don't know when this will happen. I am assuming in the next week or so. So it was a very long day. We came home played outside for a bit, got Ash her bath and went to the park. Unfortunatly we had rain and everything that Ash wanted to do was wet or she was to small for. We then headed out for dinner.

I will let everyone know results when I get them. I know I'll get emailed as soon as there is some kind of news official or not. Our doc is so wonderful that way, we could not be more lucky.

Until later

Hi Everyone,

This is just a short update. We are leaving for scans in about an hour or so. Ashley took another spill. She misjudged her distance once again and fell flat on her fact literally. She has a bump on her head, had a bloody nose and scraped herself right above her top lip. Scared the life out of me. But she is okay.

I'll update again when we get home or later tonight hopefully we will know something small by then.

Until later

Julie n Ashley

Thursday, July 24, 2003 8:48 PM CDT

Hello again,

Not much new going on here. Ashley is doing well. Though I am a little worried about one thing she is doing. She ran into my bedroom door full force and split her lip open. I heard it happen but did not see it. Now I hear that at daycare she was playing outside and 2 times once in the morning and once in the afternoon she ran into a cement wall face first. Though there were no injuries I am wondering about her eyesight. I can't believe or find it hard to believe that she would purposely do this. Nor do I believe that it does not hurt. She hit hard enough to knock herself down on her butt. So I am going to also talk to the doc about that on Tuesday when we go for scans. Her eyelid is still purple too and I am not finding any evidence of a stye or anything like that. So other than that she is fine.

She misses grandma and Grandpa Henry and Aunt Amy. She hollars for them a lot. If she sees someone with long blonde hair she hollars AMY!!!!! I feel bad. I wish she could see them regularly, it's plain to me she misses them.

Ashley has a new favorite video. I don't remember if i mentioned this before or not but it's Elmo visits the firehouse. She runs around saying YEAH FIGHTERS!!!. She's a hoot. And getting TALL!! I put on a pair of jammy pants that came from Vandy and they were miles to long on her when she got them and now they are just about to short.

Well it's time for me to go to bed. Ash is already sleeping. I'll update again after she has her scans this coming Tuesday.

Love

Julie n Ashley

Tuesday, July 15, 2003 11:36 AM CDT

Hi everyone,

This will be short as there has not been all that much happening. Ash did not get her shots that she should have last week. She decided unstead to get sick. So we went to the docs anyways to get checked out and she had hand, foot, and mouth again. It was very mild and only in her mouth this time. Although the fever got a little to high for me. When she went to bed last Thursday night her fever under her arm was 102.7. By Friday night though her fever was gone and stayed away so we pressed on with our plans to have her picture taken on Saturday. They are awesome!! I don't have the color ones yet but when I do I will surely scan one and get it posted here.

Now that Ash is back to feeling good she is definitly having her moments. She is into hitting bigger than ever. And throwing things which in itself is not good but when she is throwing things at you it's even worse. Maybe normal but it's gotta stop. She got herself in trouble throwing things at me. Hit me twice in the back of the head with a hard soccer ball and then threw a rock at me for telling her NO. I guess the terrible 2's are here!! We will see if I survive them and remain sane or if I am a raving lunitic afterwards LOLOLOL.

Well I hope everyone who reads this is doing well. I am praying for everyone who needs the prayers!!

If anyone needs anything leave me a message I will do what I can.

Love

Julie n Ashley

Wednesday, July 9, 2003 5:39 AM CDT

Hello!!

Well it's not so good to be back in TN!!. I would have loved to just stay up in MI with family and not come back. We had a great time. Ashley got to go for a lot of walks wtih me and Aunt Amy picking up every stick along the way and bringing it back to Grandma's. There was lots of time outside for Ashley to play and Amy got her a little pool to play in. Ash had a blast. She started out in a bucket which was halarious. It was just to cool off but she was standing in it and trying to sit down and splash and it finally tipped over with her in it splashing her with cold water. Grandpa Gar had a cookout on Saturday and Ash had fun there. She was playing in mud most of the time. Had a couple of accidents though. She got in a chair and was kneeling facing backwards (lawnchair) and she pushed on it to hard and her and the chair went over backwards. She did not get hurt just scared the buggers out of her. No sooner than I get her calmed back down and put her down to go play again than she trips trips over the leg of the porch swing and falls again. Poor thing!! And lastly, Ash finally got to go to the Zoo!!! It did not interest her like I had hoped but it was still fun.

We go back for scans and onc appointment on the 29th of July so say a prayer that she has clean scans so we can start doing these every 6 months.

That's it for now. I hope everyone is doing okay.

Until later!!! God Bless!

Julie n Ashley

Wednesday, June 25, 2003 10:36 AM CDT

Hello again,

This will be my last entry until we get home from Michigan after the 4th. We are doing great here. Ashley is showing her jealous side now. At daycare there is a new baby Bethany who is now 1 month old. Ashley has started refusing to eat her lunch unless it's fed to her like a baby and hitting and throwing when the baby is being held. I held Bethany for a minute while a bottle was being made and was told not to sit down with her due to Ashley hitting and throwing things. Wow what a jealous streak. Makes me wonder what will happen if Ash is ever a big sister??

Well I thought for a couple of days that I had sold my house finally but that is not the case. We are stuck in Centerville indefinitly. How depressing. I was looking so forward to getting the heck out of there.

Ashley only has 3 more vaccinations to get and she will be caught up. I need to get her in for those as soon as we return from MI.

I'll take pictures while up north and post some of them here. I hope everyone has a wonderful 4th.

Love

Julie n Ashley

Tuesday, June 17, 2003 3:04 PM CDT

Hi Everyone!! We are doing great here. It's so nice to write in here with good things and not with all of the worry as before. Ash is doing wonderful. She is a little monkey. Ashley has a little pink foam rubber chair that is in the living room for her to sit in. I was standing outside the front door with her in plain view and watched her as she flipped the chair over completely upside down, the proceeded to climb up the back of the chair, come down the otherside on her belly, land on the floor on her head and do a sommersault!!!! I was on the phone with her grandma and busted out laughing. The look on Ashley's face when she landed on her back was so funny. Then she busted out laughing and it was the beginning of a marathon climbing on the chair!! One of those times I should have had a camera!!!!! This video might have gone somewhere!!LOLOL. Oh well maybe next time. Ash got to play outside inbetween the raindrops this past weekend. And as usual sticks, rocks and weeds (to Ashley they are flowers) are the favorites.

Ash still has a runny nose off and on. Not sure what the problem is but as long as it's not illness or anything else bad I won't complain seeing as how it's periodic.

Our trip home is only just over a week away!! I CAN'T WAIT!!!!!! I probably won't post while were gone but I'll get another update in before we leave.

Thank you all for the prayers. Also thank you to all of you who sign Ashley's guestbook. It means a lot to me and I do check in almost daily. Thanks you!!!!

Love

Julie n Ashley

Saturday, June 7, 2003 11:53 AM CDT

** Quick update!! New link below for Ashley's new smilequilt. It's beautiful and perfect for her!!!!!

Hi Everyone!!

Just a quick update while Ash is napping. I still have to get ready for our shopping trip this afternoon. Have to get to Dickson for somethings.

Ash is doing real good. Her strips are falling off. I let her take off one of them last night that was hanging on by a thread. There are only 2 more left. The incision looks great. It won't be noticable at all in time. Ashley's selective hearing is getting better all the time as well. It's amazing!!!! I don't know what I posted last time and I just read it before doing this, man the memory is going!! We have more scans in July then if those look good we'll be going every 6 months YIPPPEEEEE!!!! Ashley is still free of colds which is nice. Her temper is flaring big time. I have never seen a child with such a temper. Granny Betty who takes care of her is not sure what we'll do with her when the terrible two's hit hahahaha!!! Neither am I!!!

It's amazing now that her scans are over and we have had the good news what has happened to me. I am not fatigued any more and feeling so much better. I was so tired all the time before. Almost unable to function.

Well it's time for me to get ready. I'll update soon.

Love

Julie n Ashley :)

Monday, June 2, 2003 7:47 PM CDT

Hello!!

Just wanted to give a quick update. Things are well here at least as far as health goes. Ashley is doing very well and still has her strips on her neck. The surgeon said that he did not need to see her as planned as long as everything was okay. So we got to skip today's appt. I also found out that we have to do her scans again in July. After that depending on how they look we go to every 6 months. But I am positive there will not be anything alarming.

Ash and kitty are kinda getting along. This is the typical day for them, he comes out for attention or food and she chases him until he goes and hides again and then it starts all over again. But atleast he is out when she is.

Well that is about all for right now. I'll post again later. Please keep the prayers coming and sign the guest book while your here.

Love

Julie n Ashley

Wednesday, May 28, 2003 11:47 AM CDT

Hi Again,

Ashley had her check up and did well. She is now 23lbs and 31 3/4 inches long. Doc said that Ash is doing very good and she was also glad to hear that Ashley loves to brush her teeth. Let me tell ya!!!!! She would brush them 10 times a day if she could. Doc also said Ash is ahead of age on her speech too. We also had a conversation on disipline. Ash has become very good at selective hearing and NO. She climbed onto a chair in the room with the doc and was standing in it. She knows better than that so the doc told her to please sit down. Ash stood there and stared at her like who are you to tell me to sit???? Well it took 2 more times of asking before ash decided she had better comply.

Ashley's incision is doing well. Just has the sterastrips on it now. She's attempted to take those off a few times until I raise my voice to her. I can't stand to see her pull on those things, not to mention they are to stay there until they fall off themselves. We go to see the surgeon for a follow up visit June 5th.

Well that is about all for now. I will update again next week sometime. I hope everyone is doing well. Thank you for all of the prayers and messages. We do love them. I will be saving all of this for Ashley when she gets old enough to understand what she went through. I am sure this will mean a lot to her as well. So please keep signing the guestbook even if you have already signed it.

Later,

Julie n Ashley

Friday, May 23, 2003 9:30 PM CDT

Hi all!!

This is the entry everyone has been waiting for!! I have been waiting all day to hear from Ashley's doctor. I had been told that pathology report would be in today from Ashley's surgery. Guess what??? Do you want to know?? OKAY IT'S NEGATIVE!!! NO CANCER LIVES!!!!!!!! I can't say how happy I am to know this. I am so happy I don't know what to do with myself. Now my daughter is in complete remission and I believe it.

I think now we only go for CT Scan every 6 months. I am not sure on that. We have a 3 month scheduled but whether it will change I won't know til I talk to her doctor early next week.

Things are going well here. Ashley still has her bandage on but it's beginning to fall off on it's own now. Hopefully in the next day or so it will be gone. Then just the strips holding it closed. Boomer is still afraid of Ashley and still hides the whole time she is out. I think Ashley is getting offended by it but she just will have to deal with it.

I'll update again after I talk to Ashley's doctor. She has her pediatric appt too for her 18 month check up Tuesday.

Love

Julie n Ashley

Thursday, May 22, 2003 1:26 PM CDT

Hi Everyone!

Ash is doing well. And she still has her bandage on as well. That's an acccomplishment in itself. She has been scolded a few times when I have caught her with a firm grip on it ready to rip it off her neck. She does not know yet that us mom's have eyes in the back of our heads!!!!!!!!

Well we are going to probably get the news tomorrow from pathology. I will update this as soon as I get the news myself.

Ash is getting real upset with her kitty boomie. He only comes out when she is eating dinner, or in someone's lap. Other than that he stays under the couch or chair when she is out. I feel bad I know how much she wants to pet him. He does however come out the minute that she is in bed with the door closed. Once he gets used to her he will be a great kitty for her.

I never have posted anything about others before but please pray for Conner. He is having very major surgery tomorrow and needs all the prayers he can get!!!!!

Later!!

Julie n Ashley

Tuesday, May 20, 2003 9:02 PM CDT

Hello Everyone,

Today has been a long day. Ashley had her surgery and did well. ALL of the tumor and the enbedded lymphnodes are GONE!!!! They are headed to pathology to be tested and we should know in about a week if it is cancer. We got to the hospital at just after 11am this morning. Ashley raced through the waiting room getting every book she could find and bringing it to her dad. Then she got called back and we got a little room to stay in. She finally went to surgery and was there from about 12:30 til 1:30 or so then not long after we got to go and see her in recovery. Boy was she pissed. So mad and crying that the cuff on her arm for blood pressure could not get it's numbers and was pumping harder and harder up to 200 before the nurse turned it off. Ash was given some morphine to help her calm down and it worked. She was calm the rest of the stay at the hospital. Soon after we were back in are little room she was wanting to get down and play but not stable enough to stand or get around by herself. We were told by the nurse that she was going to page the doctor and have us released and I have never seen it take so long. She said she paged him 4 times over an hour and he never came or responded. She finally went looking for him. Then it took yet another 20 minutes or so for him to walk in and say see ya later time to go home and walk out.

After we got home ash was back to playing and asking for "din-din" So I fixed her something small and she ate well. She played the rest of the evening and just laid down to bed. Believe it or not she is already trying to get the bandage off her neck!!!! I have a feeling if I leave her for a moment in the morning in her crib that thing will be gone and the doc wants it on til Friday if possible. I DON'T THINK SO!!!!!! It's not going to make it.

Ash is making progress with her kitty boomer. He now comes out when she is on someones lap or in her chair eating dinner. He came out for a bit while she was sitting on a friends lap and Ash got down to go and pet him and proceeded to fall and scare him back under the couch and he's not been out since.

I'll post again later. I hope everyone is doing well.

Julie n Ashley

Monday, May 19, 2003 1:21 PM CDT

Hi everyone!!

The big day is tomorrow. I am getting real nervous about this. I am just hoping that she does well. I have no reason to think she won't. I just hate putting her through this but it's got to be done. And hopefully when this is over cancer will be out of our lives forever. I will post tomorrow night and let all of you know how it goes.

Ashley got a kitty on Saturday!!!! She loves boomy. His real name is boomer. He is a wonderful 2 year old black cat who really likes Ash except when she squeals. He has spent the last few days under the couch waiting til ash goes to bed before coming out and exploring. I will post a picture of the two of them as soon as he is used to ash and his new surroundings. Last night he meowed for hours after I went to bed. He was scratching at my door and just would not leave me alone. I had him come in and he was under my bed meowing so I kicked him out!! I was real glad I had ash's door shut tight or he'd of been in there after her LOL.

Thank you to all who check in on Ashley. All of the prayers really do work.

Wednesday, May 14, 2003 2:21 PM CDT

Hi again!!

Well Ashley will have surgery on May 20th, this coming Tuesday. I was told that it's outpatient and that she should be running full speed by the next day. And knowing Ashley if this is as small as her biopsy she'll be full speed once we get home from the hospital. We have to be at Vanderbilt on the 3rd floor by 8:30 and surgery is at 10:30am. It does not sound like they will be using the incision from her biopsy. A new one will have to be made. It also sounds like most of this mass that will be removed it lymphnodes. I knew that there were lymphnodes near by but they are embedded in the mass or what is left of the mass after her having had chemo. And of coarse everything that the doc removes will be tested for cancer.

Other than that we are doing well. I can't wait to get this over with for good!!!! Ashley is now telling me NO. And she says NO to everything. Then she runs away. She gets quite upset when I say yes and then go and get her. But that's normal.

I'll update right after we get home from surgery and let everyone know how things go. I am sure it will all be okay.

Love

Julie n Ashley

Wednesday, May 14, 2003 8:20 AM CDT

Hi again!!

Well we had our Doc appt and it went well. All he really wanted to do was to feel Ashley's neck and see where the mass was in relation to everything. A very nice man. Ashley really liked him. She was after his pockets in his jacket the whole time. Trying to grab papers, pens, etc. Was really cute and Dr. was tickled too I think. Anyway the surgery is a go I just don't know exactly when. I am waiting to hear from them. I'll post again when I know more.

Love

Julie n Ashley

Thursday, May 8, 2003 8:38 AM CDT

Hi again,

I have some news and it's good. Ashley's doctor and surgeon have spoken and the surgeon thinks he can remove the whole tumor!!!!! We are going to go and see him on Monday and discuss the process and risks. I know there are always risks but if they are tremendous then I will stop this surgery. We will see!! I am sure that he won't do this if there is any doubt in his mind. At the very least we will get a biopsy.

I will hopefully talk to Dr. Rhodes after the tumor board meets today and will update again if I get new information.

Much love

Julie n Ashley

Tuesday, May 6, 2003 5:32 PM CDT

Hello to all,

I don't have much time to write right now but Ashley had her scans today. They already read them as well. The radiologist said that it looks as if it has grown slightly. It's still with in their margin of error but in comparing to last scan it looks a little larger. So she will have a biopsy done next week and all of her information will be sent to Dr Kushner ASAP.

I will write more later. Her scan was hard on her today. New meds to put her to sleep, called conscience sedation. They were awful.

Until later

Love
Julie n Ashley

Wednesday, April 30, 2003 1:46 PM CDT

Just wanted to put a quick update in for those who check on us regularly. Ashley is doing well. We have less than a week til scans. I was nervous before but now I am really nervous.

We are going to go and visit her grandparents in Michigan in a couple of months. Ash likes going to their house. This time we are bringing her bike so she can ride. There's no where for her to ride at our house.

Ashley met her 2nd sister this past Saturday. For those of you who don't know us, I was not married to Ashley's dad. She is just now getting to meet the other side of her family. She will hopefully be meeting her grandparents that live in TN soon as well. She'll meet her older brother this Saturday. So far so good. Everyone keeps bringing disposable cameras for pics and Ashley steals them. She stole her sisters camera and hid it. We found it in her playpen LOLOL.

I am trying to get a benefit dinner going for Ash to help pay her medical bills. I know many of you have done that for your children as well as fundraising. If anyone who reads this has ideas on how to put this stuff together please let me know. I have a good friend of mine helping me but someone who's done this before would be awesome. And I am also trying to come up with something for families in TN to recieve help paying their children's medical bills. TN is awful on that and the agencies that are out there don't help in that way. And unless your dirt poor you can't get medicaid either. TN needs something more. New Jersey has a Children's Catastrophic Relief Fund that helps with expenses as well as unpaid medical bills. So if anyone wants to help get something like that in TN let me know. I am frustrated and angry that there's no help for anyone unless your 100elow poverty. Well we need help too and the state needs to realize that and do something to help us. I feel pretty left out in the cold on this issue. As I am sure many others do as well. So any ideas on how to start something please let me know. I have contacted the Gov of New Jersey to find out from him what it took to pass that fund in NJ so that I can get an idea of where to start here. So far the only thing I can come up with is to start a petition. Then it's how the heck to write a petition.

Okay enough of my babbling. I am sending my prayers to all that need them.

Love
Julie n Ashley

Tuesday, April 22, 2003 9:18 AM CDT

Hello everyone!!

I hope everyone had a great Easter. Ashley sure did. She made out like a bandit!!!! Her Grandma and Grandpa were here and they brought her new clothes and new shoes. She also got new clothes from her grandpa Gar too. Ash met her sister this weekend for the first time. Brandy seemed to have fun with Ashley and also brought her an Easter gift.

Ashley did lots of playing outside. She kept us laughing. We did not know that she can whistle. Well she can!!! I had no idea she could nor did I know that someone her age could.

Scans are only a couple weeks away. Everyone keep those prayers coming!!

Love

Julie n Ashley

Friday, April 11, 2003 11:04 AM CDT

Hello Everyone!!

Here is the latest and greatest on Ms. Ashley. I have spoken with her doctor and it's known that I am seeking a second opinion from Dr. Kushner at MSKCC. It's been very well accepted and I am so very happy about that. That was a great source of concern for me. The game plan is Ash will have her CT Scan on May 6th along with a bone scan and blood work. The blood work may tell us if there is disease still living but it's not 100%. This test can also be done via urine. And while her docs here say her levels of VMA/HVA were elevated in the beginning they were still within normal range for her age. Dr. K seems to be very interested in this test on Ashley. It's hard to understand. So, after scans are all read, if the tumor has not shrunk then we do a biopsy of it and find out for sure what is there. If the tumor shows viable NB then we send all scans and reports to Dr. K and he will give his recommendation for treatment. Of coarse there is a catch. Dr. K from NY says that if ALL of the biology of the tumor is favorable then biopsy may not even be needed. He said that if all is favorable that it would be highly unlikely for her cancer to ever grow dangerously. Ashley will not be considered relapsed if NB is found. She will be concidered MRD (Minimal Residual Disease). She does have other options available to her aside from Chemo if it's NB. Removal might be one of them. If not then Accutane is also an option. Accutane forces or trys to force Immature NB cells to mature, therefore not being malignant anymore.

But of coarse we are all praying that we find dead tumor there. That would be the best thing in the world. At that time I will be able to truely say she is in remission and believe it when I say it.

Wednesday, April 9, 2003 12:41 AM CDT

Hi again,

I've really been doing some poking around here. Trying first to ease my mind and second to get a plan together just in case we don't hear the news we are hoping for.

I have found out that Ashley's cancer was so slow growing that it's possible that no growth would have been seen to this point and maybe not in May either. And that if a biopsy is done and we find live tumor chemo is in our future again. The only thing that will stop me from insisting on a biopsy is very noticeable shrinking going on. Otherwise it's biopsy. If this comes back active I will get another opinion on whether her tumor is truely inoperable or not. I already have a doctor picked out for the 2nd opinion. So I am praying that it's dead tumor but prepared to hear it's live too.

Ashley is doing great. She's just running and playing and throwing the occasional tantrum. Normal stuff. She got some new clothes this past weekend for summer and 2 pairs of shoes. She has her grandma and grandpa coming to visit next week and we are both looking forward to that.

I will update soon. Most likely after her scans on May 6th, but sooner if anything happens.

Keep us in your prayers!!!

Julie n Ashley

Saturday, March 29, 2003 1:15 PM CST

Hello Everyone!

Just thought I would post and let all know that Ashley is doing fine. She did not get to go to the zoo though. It just was a little cool and looked like rain so we had to postpone it for now. She's been staying well, no more colds or illness. Her hair is growing back so fast. It's gotten real thick just in the past few months.

Ashley's been doing a lot of playing outside. She absolutly loves it. And it's good exercise for me LOL. I get to run and chase her down LOL.

She has her scans in about 4 1/2 to 5 weeks and I am already nervous but excited at the same time. I really want to know what is going on in there at this point. I am also wavering on whether surgery is the right thing to do. I guess I'll know after the scan results and of coarse by what the doctors say.

Well mom has things to do and ashley wants to color when she gets up from her nap. That is if she can stop eating the crayons long enough to color a picture for me LOL.

I'll update again soon!

Friday, March 14, 2003 12:37 AM CST

It's been a little while since I updated. Ashley is doing great. She had a minor cold, just a runny nose and that's all. She is having lots of fun playing outside and does not like having to come in. So I am thinking of taking her to the zoo this weekend to see all the animals. She especially likes monkeys so I think she'll have a good time.

I tried to get her scans done a month early but to no avail. So we won't know anymore on her tumor til after May 6th when she has her next scan. I've been okay with it so far now that I know that was a typo. But still looking forward to the next scan and the decision of surgery or no surgery. Wondering if there is cancer there is driving me nuts.

If I don't post again before her scans I hope all that read this are doing well.

Julie n Ashley

Sunday, March 2, 2003 8:37 PM CST

Well I have been asking a lot of questions. Thank goodness we have a wonderful Doctor like Dr Rhodes who takes the time to email me even at 11pm at night!!!! I have been worrying due to the size of Ash's tumor and now have found out there was a typo in the radiology report. Her tumor was 1.7cm in November and is 1.8 as of her Feb scan. That is considered the same size or no change in CT terms. All of Ashley's reports are going to be copied for me so I have them for my records. I have asked to have her Scans done a month early if they think we would see any changes at all. Dr Rhodes is going to look into it for me and see what they say.

So I am feeling a little better about this now. I still want a biopsy done and that will happen either by the doc's decision or by mine and Dr Rhodes supporting me in that decision. So hopefully we will know more in early April.

Friday, February 28, 2003 10:00 AM CST

Ashley saw the doctor yesterday. She is doing well. She now weighs in at 22lbs and is 30 1/4 inches long. So she has grown. I also found out some other information on ashleys tumor. I was told that the remaining tumor is about 4 inches long. I intend to talk to Dr Rhodes again and talk about doing her scan early. I don't understand how they can say she is in remission with 4 inches of tumor still in her neck, and having done NO biopsy at the end of therapy to make sure that what is left is truely cancer free. So when I find that out I will post it and let everyone know.

Thursday, February 27, 2003 12:09 AM CST

Well, we have now gone almost 3 full weeks without any illness. Ashley is completely over her bronchitis now. She has her 15 month check up today and is once again getting out of her vaccinations. I was told that we can not restart them until her 18 month check up. So she escapes the needles once again.

Ash is growing and growing. She is really taking off now that she has been off chemo for 3 months. A lot of her clothes are now getting to small or are to small. Time to go through her drawers again and weed the stuff out.

I'll post how her check up goes for all to read. Hoping it will be a good one, no reason not to be that I can see.

Thursday, February 13, 2003 2:32 PM CST

Well I have talked to the doctor about Ashley's scan again. I was told that this is residual tumor left in her neck. I guess that is not uncommon and they are expecting it to melt away, but it's not. I don't think it's changed in size at all. That is why they might want to do the 2nd look surgery. I asked them to do a urine test and was told that it would not work on Ashley because she is considered low risk. Dr Rhodes said that even when she was first diagnosed with NB that the urine test did not show cancer. So that is one thing that won't be useful. I also made sure that when she has her next scan in May that I will have say in whether surgery happens or not. I don't know about anyone else, but not worrying is pretty hard to do even if it's not growing. And even if it did, it would be as slow growing as the last time but that does not matter to me. What matters is, is there cancer still lurking in there? Time will tell I suppose. Atleast in May sometime we will find out. Until then, I'll just try not to worry to much and enjoy her.

Saturday, February 8, 2003 11:30 AM CST

Ashley's scans are good. Her neck showed a spot there that I was told was there on the last scan. The docs "think" it's scar tissue. They said that if it's still there or it's changed or anything they are going to do a second look surgery to find out what it is exactly. Therefore I am going to ask them to do something now. Not surgery but atleast do something that can tell me whether this is cancer again or not or whether it has cancer cells in it. I'll let you all know what I find out if they are willing to do anything at all.

She got over her cold and now has a running nose again!!! But she is acting fine just hates having it wiped LOL.

Thursday, February 6, 2003 2:14 PM CST

Ashley had her CT Scans and she did a great job with them. She was awake for the whole thing. So far the results are good. The Chest, abdomen and pelvis are clean. We are awaiting the results from the head and neck. I guess someone other than her doc reads them so we have to wait for them. I am hoping that I will her later today. I'll let you all know when I hear something.

Sunday, February 2, 2003 12:13 AM CST

Well I am updating before I thought I would have to. Ashley has been sick quite a bit and this time it's been worse than the rest. A cold that has been draining to her lungs and she's had trouble breathing. So she is on steriods now and on breathing treatments. She is getting better though. She's not wheezing all the time like she was before. The steriods seem to be doing their job. Due to this we probably won't be having a CT scan on Tuesday. Won't know this for sure til Monday though when I talk to the Onc docs. Going to see if they will do the scan with her awake and see if we can get it. Hope so!!!

Wednesday, January 29, 2003 at 07:08 PM (CST)

Ashley was diagnosed with Neuroblastoma in July 2002 at 8 months old. She was stage II favorable biology. Her tumor started behind her right ear, down her neck, all along her collarbone and extended into her chest. After undergoing four rounds of chemotherapy she was told she is NED on November 7th 2002. We go back for our first CT scan Febuary 4th. I'll post the results.

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