A Day in the Life of Ashley

2010-02-03T12:40:00.020-05:00

As an Auntie I get the opportunity to do so many wonderful things, one of My favorites is to Babysit. At least one day a week I get to watch Nora. She reminds Me of Myself so much... I LOVE IT! No, I don't have favorites, I just get to watch Her more often and for a longer period of time than the others. She sure is Ms. Independent at the ripe old age of 2! When Mommy leaves, No tears, Just a "Bye, Bye Mommy" and "Love You". She wants what she wants when She wants it and I seem to be the only one that can really reason with Her and She'll listen. In times when I am not feeling well, the little pitter patter of the kids feet give Me that extra boost of energy to get up and get some loves from them all. If I am too sick, they'll come up to My room and say Hi or stay and snuggle. Who is better than Me? Little Miss Nora and I have our routine of play and all those wonderful things and when it's time for a nap, I make her a Warm Bottle, Change Her clothes and She snuggles in My Warm Bed and either Falls asleep or asks to go in Her crib. She LOVES it when Mark is Home so she snuggles in right between us and goes right to sleep. He is typically working, so She likes to ask where He is and What He's doing. Then periodically between gulps of Milk, She will say, "Markie at Work?" and I say Yes and She lays back down and gets back to drinking Her bottle. Too Cute. Way too cute! We have so much fun together- Painting Nails, Dancing, Playing, Everything. Ohh and Driving. She LOVES the quad, well any and all toys! She's become My Little Helper when working on things outside, inside, whatever. My Little Princess. I Love Her So!

Look Out World, Here I Come!

2010-01-14T00:30:00.022-05:00

As I am still recovering from the recent surgery, Mark and I got the opportunity to check out a truck that We talked about buying a while ago. I've wanted to lift mine for quite a while now, but it just seemed to not make sense to do that to a "Daily Driver"... Not that I can remember the last time I started My truck mind Driving it! Well, We got it! So Freegin Excited! I know that when it comes down to things that matter, materialistic don't. But, they do seem to make Life more enjoyable. I am absolutely elated! I can't wait to be able to move My right side/arm normally again so I can drive standard! I haven't smiled that big in such a long time! Loving Life and Loving Love!

IT'S HUGE, I LOVE IT!

That Was A Lot Harder Than I Thought It Would Be!

2010-01-12T00:15:00.002-05:00

Waking up from Surgery in the ICU was quite interesting to say the least. My First thoughts and questions were, Why am I here and Can I Please Get Up and Walk? I felt better than I have in such a long time, so long I can't remember when I felt this good... 5 Hours after getting Ribs spread, Muscles Cut and Lung Removed? Wow. What a Blessing. I am sore, but so ready, ready to RUN! To Live! To Laugh! To Be Ashley Again. The experience I had at the Hospital was something that I couldn't have dreamed up. Every single person was so helpful and kind. Wow, this is a lot more difficult than I thought it would be, but the Doctor said a few weeks and I'll be better. Time seems to go by so slowly when You are in Pain, yet it seems quick when You are able to look back. Yes, I'm sore, but I feel so, so much better Physically and Mentally I feel I can conquer the World!

Surgery.... Blahhhhh......

2010-01-06T00:04:00.017-05:00

Well, today is the day. I've had a growth in My Right Lung that's progressively getting larger for quite a while now. For the past four months, I'd been feeling increasingly fatigued and hard time breathing. Felt like one of My big Brothers was sitting on My chest. Somethings gotta be wrong. I made an appointment with My Lung Surgeon and We decided once and for all to take this thing out and today is the day. I'm anxious, but excited to feel better. I want to Live. I'm thrusting for Life. Can't wait to feel better!

Fear and Fatigue

2010-01-03T06:54:00.000-05:00

I can't remember the last time I actually felt well. I don't know what is going on, but somethings not right. I've been trying hard to get off all of this Pain Medication which is frustrating within itself. So Tired, So Achy, So Much Pain. But, the medication is simply false hope. And I can't imagine what it's done to My body. Everything seems to be give and take and it's really irritating. So many people take so much for granted and as much as I can, I try and appreciate everything. So, I ask Myself, What am I Missing? What can I learn from this? As much as I try, I can't figure it out. I'm Blessed with the opportunity to continually learn many things, but mainly Humility. The Human side of Me is conflicted with the Relationship I have with God. I do get frustrated and feel ready to Go to Heaven. In the next moment, I know I'm not ready yet. I have things to do. Many things to do. I know that I am here for a reason with differences to make. There are so many Blessings that I can concisely acknowledge and things that I don't are endless. I'm ready to go home. Back to Heavenly Father. But there is too much work I have left to do on this earth. I'm scared, but I know everything happens for a reason.

~Our Wedding, One Year Later~

2009-11-08T22:30:00.001-05:00

I can't believe it's already been a Year! Although things are still not up to par in the Health Department, Time has somehow flown by. To say that Something is Meant to Be is to put Our Story Lightly. It's more of a Journey then I Story. Anyway, Somehow We missed meeting each other sooner. We had very good mutual friends, yet never crossed paths.A bit later I needed some help and a Mutual Friend, Tyler brought Mark with Him and introduced us. We were really good friends for a long time and never did I ever think We'd have a relationship more then that. I remember Him being really frustrated with Relationships and then saying, announcing to everyone that We were dating. I laughed- Thinking He was completely kidding. Next thing I knew, He was telling Me "Your Not a Girl, Your Ashley" and Yelling at Me How Beautiful I Am and then Telling Me He Loves Me. (That's quite short version) Anyway, throughout all the Hospital Visits, New York, Boston, Essex, New Haven, Washington DC, etc. Plus Doctors visits, Surgeries- I knew that there was This Unconditional Love that I never realized was possible, at least for Me. A Relationship, Mind Getting Married was far from in My Plans. Just Trying to Stay Alive took up My time. Our Journey is Unique. I Love My Man. I can't thank God enough for Putting Us together and having a companion for Time and All Eternity.

2009-08-10T13:57:00.002-04:00

Sorry to All... Thank You for Following My Blog! My Laptop I should say Laptops have crapped out on Me and I can't sit for well on a good day 20-30 Minutes. But those are Few and Far Between! Just gotta get some Cash Together and everything will Be up to Date! Thanks for following and again, sorry for the inconvenience! Love You All and Everyone is Always in My Thoughts and Prayers!
Forever and Always,
Ashley

My Seven Year Cancerversary! Yay?

2009-01-18T22:10:00.003-05:00

Well- I'm alive. This date, seven years ago exactly, my Father showed up at my School. It was History class I believe- or maybe a Study Hall, doesn't matter anyway. Daddy's always Working. If he's not working, he's doing something for Church. And if he's not doing something for Church, he's working. It's always been this way. I mean we live under the same roof, but I only see him a couple times a Week.
He's Sleeps and sometimes eats here. That's pretty much it! Mom never really cooked dinner, but especially now, theres not food very much at all. I get real tired at the Grocery store, but we gotta eat. And now being Married and all, I've got to at least make an attempt I'm falling asleep, I;m so tired right now. (Unfinished)

Yeah, So I'm Married!

2008-11-14T00:20:00.006-05:00

I don't know where to begin because it's been so long since I've Blogged. Sorry to those who follow it... I promise I'll try to be better about it from now on!
Ok, so Mark and I decided to get Married a while back. We've always known that we would take that next step, but when? And why not now? I was so excited to hear that he wanted to go to Las Vegas for his Birthday which was September 23- one of his Brothers, Justin wanted to come along and basically had assembled a group of people to go with. Well, I was excited for many reasons, but most of all, I knew that if we were to go, we'd get Married. As time got closer and reservations were about to be made, of corse I had to ask my Parents out of respect if it was ok if I went. In asking them, I opened my Gob and said, well you know if we go, we're going to get Married. I totally threw myself under the bus with that one. Oh Well. Needless to say that was a negative on their end. I didn't want any money or anything, just their permission. I knew we could've gone, but again, I also knew that no matter how much we would try not to, we would get Married. That's not right to deprive our Families of our Beginning together. So, Mark asked My Father and We decided to go for it. Just immeadiate Family. November 8 sounded like a good day. I asked Heidi if She would help decorate and all that goods stuff and She was more than happy to as usual. I've known Heidi since I was 3 Years Old. She lives right next door and when My Parents built the House and We moved in, We Met and We have been best friends since. Heidi is incredibly talented with everything in general and has a passion for design and is very crafty. Needless to say, if We had a Traditional Wedding She'd be My Maid of Honor. I thought that I would be able to be more involved in physically going places, I just wasn't well enough and it wasn't happening. So, I gave Her the Go Ahead and She Went to Town! To be quite Honest, it Mark and I both really didn't care about the Decorations or anything like that. We just really care about being together. So I expressed My Likes and Dislikes and Heidi's Creativity along with My Mother and another Friend Shauna was incredible. I got a name of a Florest in Town that does it as a Hobby, so I had a whole slue of Creativity and it was spectacular! Would've made Martha Stewart very proud! (unfinished)

Yes, I Am Still Alive Thank You

2008-09-16T01:14:00.000-04:00

Oh Boy- Where do I begin? It's been so long since I've publicly Blogged- Sorry to everyone wondering whats going on! And thank you very much, I am still alive and kicking here! Where to begin- Alrighty- Health: I've gotten some ridiculous scans lately to check for Paragangliomas and Other sorts of more Rare Tumors- Scans consisting of getting an injection of a Radioactive Isotope in some form and then having to go back for scans three days in a row- And then not being able to touch food, lay or be next to anyone especially the kids. That Sucked the most. I Love all those little buggers and it of coarse when you want to see them the most, you can't. Besides Doctors, Hospitals and Scans, My Lungs have been getting progressively worse. I'm having a real hard time breathing- Aspirating a lot and all that doesn't really help. I don't know what to do- If any of the kids lay on my chest, I can't breath at all. Weird.
Moving along, as for Mark and I- I can't tell you how amazing everything has been. Our Prayers have been continually answered in so many ways. Everything is falling into place. It's so great! He's turning 21 nezt Tuesday the 23- Crazy! We've been together for such a long time- and for all eternity very soon! I don't really know what else to say- Yes I'm still in Bed all the time and Yes I am really sick still, but Life is Wonderful! Absolutely Amazing!
My Love to All,
*-Ashley-*

YAY- Not Another Day of Scans!

2008-07-24T22:32:00.002-04:00

Well I woke up again bright and early to get another scan. It was thundering and lightening out this morning and raining like crazy. It’s so beautiful! But like usual, the drop in barometric pressure gives me a really bad migraine, so for the past few days I’ve been real sick with nausea and vomiting. No medication works, just throwing up and sleeping. Lately I havn’t been able to sleep for some reason. It’s really frustrating- I don’t understand why I can never catch a break! Such is Life. C’est La Vie! The Doctors that read the scans have been really kind, like usual, but overly friendly and told me that the scan was clear! Nothing Found! Very exciting! As much as I am relieved, the type of tumors that they were testing for secrete hormones that would explain why I am passing out and having these weird surges of adrenalin which in turn make me have a rush of adrenaline when I am laying in bed. And a lot of other symptoms which have no explanation. It’s been 6 ½ years of symptoms with no answers. Incredibly discouraging. So sort of a catch 22… I don’t want to be sick or anything more to be wrong with me, but I want answers! I know that my body has been damaged permanently from most obviously surgery, but the chemotherapy's I’ve been on and all of the medications from the past as well as present. Everything has side effects, but none of them explain what symptoms I am experiencing. Aye yei yei… I don’t know anymore! At least when I spoke to the Doctor, he told me that I do not have to go back tomorrow as well, so that’s quite exciting!
Slow Down a Bit- Take a Step Back and Realize How Good You Have it. It's Amazing.
*-Ashley-*

Luvin Life, Livin Life, Fracturing Ribs- It was so worth it!

2008-06-28T23:14:00.001-04:00

So I randomly got a call from Adam and he invited Mark and I to go boating today. Dan was down for the weekend and had some work done on his Boat, so mine as well go for a ride right? Adam had a couple friends from School there- they we pretty cool, real fun to chill with. It’s kind of funny how Mark went to High School with both Adam and this other kid that Adam’s good friends with and the last thing Mark could’ve ever imagined would be hanging out- Boating with them? I got some food together and we cruised on over to a Cove.
We ended up meeting Daniel out on his Boat with Deb and Mike and Michael Conte showed up with his Fiancée in an itty-bitty put-putter as well. That gave us a good laugh! We ended up chillin out, Some Fishing, Some Tunes and Good Grub. It was so much fun! We were racing along the River for a bit- I was on the front bouncing up and down so much, Dan kept laughing because the boat kept bouncing on the waves and was completely out of the water. So I am on Adam’s Boat, full throttle, and the wind was making it impossible to breathe along with trying to steal my swimsuit top! Oh it was too funny! I wished that Mandi was with us, but she was going to see Billy Joel.
A few of us jumped in the water. It was incredibly refreshing but I was so weak that the current would just take me away, so Adam swam up behind me and would push me and then swim up again and push me it was so funny. Poor kid- he was so tired- I just kept laughing at him. I’m so mean. We ended up racing back to the Marina. It was so fun! What a day what a day- Such an incredible day! I can’t wait to do it again!
Love Life, Live Life, Have Fun With No Regrets! I know I’ll be dying in pain for the next few days, but it’s totally worth it! I'm 95% sure that I Fractured some Ribs... OH Well! I got to Live Today- Thanks to my Loved Ones Again!

Another Angel on Earth, Joyce Rountree

2008-06-26T23:20:00.003-04:00

Today was for sure a Blessed occasion. Joyce Rountree came by to play with Mom, but I kid napped her and we talked for a long while. She’s such a sweet lady. I love talking to her and getting her advice and input on things. She’s been such a great friend to my Mother and an even better support system. She’s been to the hospital when I’ve had to go in and waited in the Emergency Room for hours and hours. She’s absolutely incredible when it comes to decorating and cooking, sewing and baking, just homemaking in general. I am so blessed to have people like Joyce in my life. She’s for sure Heaven sent! She hasn’t had it easy by any miens, but never a complaint or a negative word out of her mouth. Only pure and virtuous words of wisdom and positive attitude toward life. My Mom can relate to her a lot, so it's really nice to know that Mom always has someone that isn't Family to talk to, to vent to and confide in. Joyce and I have built up an amazing relationship and it's real exciting. God Sends Lots of Angels to Us and She is most definitely one of my Favorites. Purely Amazing in every way. I am so, incredibly blessed, I couldn't write down a list of People that help me and Bless my life. It's Amazing.
*-Ashley-*

Dino's Down, Beano's Getting Married, I'm Pissed Off but So Blessed!

2008-06-26T22:38:00.005-04:00

YAY! Daniel stopped over this morning to say Hello and all that stuff. Beano’s wedding is tomorrow. He’s finally Marrying his girlfriend of ten years! That’s awesome, I am really happy for them. I’ve never met his fiancee, Amy, but I’ve heard quite a bit about her and she seems pretty cool. I graduated with her younger brother Fred in 2004. I know I went through elementary school and all that with him but I only remember him being really good at Lacrosse and very cocky. If you weren’t a jock or part of that whole “clan” , you weren’t cool enough to be given the time of day. Oh High School. What a funny part of life. I really wasn’t able to go to school all that much, but when I did it would make me laugh so hard to think of what my peers think is really, genuinely important. I was always friends with everyone- Please the last thing I cared about was who you were friends with, who your parents were or especially if you had money or not. What a joke high school is. How ridiculous it is to think that people really care if you play a sport or not, if you were good looking, and what brands you wore- how much money you could show off. It was ok to be best friends outside of school, but in school- Just pass by without a reply to my Hello. One day I didn’t exist, then the next thing I knew, when people found out that I was sick, they were my best friends. Sounds rude on my end, but the people who were all of a sudden my best friend and would take some time out of their “busy” schedules to pretend that they cared, I would say Hello back and be nice, but that got very old, very quick. My name is Ashley not Cancer and I am just like you- please do not treat me like a charity case and especially don’t pretend you’ve cared about me all along. It’s sad to think that people thrive over others that have some sort of difficulty just to get attention or for someone to say, something like “Wow that so and so is such a sweetheart and look how much they care… Blah Blah Blah.” So Fake! To make matters even worse, some only acknowledge my existence around other people. If I were to say hello when we were alone, they wouldn’t give me the time of day. So sad that people get off on that. I don’t know what it does, but if their little hearts are content, that’s all that matters. Right? SELFISH! So incredibly disgusting! Well, you can see how much that bothers me and I could go on forever with my frustration over people, but I guess my point is that it really showed me who my real friends are. I know that I’ve missed a lot, but I have my Family, Mark and a few good friends. That is all I need. I know what’s important, I’ve got my priorities straight and my life is wonderful! I honestly couldn't ask for anything more. Who’s better then me?
*-Ashley-*

Happy Birthday Daniel!

2008-06-25T22:43:00.001-04:00

Today is my brother Daniel's Birthday. I feel so bad because he lives in Vermont and the rest of the family lives in Connecticut. I know he's got some friends and all, but there's nothing like celebrating with your family. My sister had to work today, so my mom and I watched Benjamin and Amelia for her. I ended up taking them swimming across the street. I love swimming, but it makes me pretty tired pretty quick watching two kids and especially catching them when they jump in the deep end! After a little while of just the two kids, Sophia (The little girl who's house we were at) got back from a Bible study class and decided to come in to. I thought that the kids would want to be in there forever but thank goodness, it was lunch time! We headed home and not to much later Amy was finished with work and showed up to pick them up. I had such a delightful time, but man was I beat! I couldn't wait to take a shower and lay down for a while. We had such a fun time together. I love them so much!
*-Ashley-*

Monday Night, Family Home Evening

2008-06-23T22:22:00.002-04:00

We all decided to get the whole family together for Family home evening tonight. Usually it's just Mom, Dad, Mark and I every Monday night. Michael and Elizabeth had prior engagements, so they weren't able to come. Everyone else was there with their children. It was great! Amy brought over some food, Jeannie did as well along with her famous Snicker doodles. Mom made really good chicken and vegetable kabobs on the grill. I made some shrimp for shrimp Cesar salad. Jeannie also made some Strawberry short cake for dessert. Everything was excellent! Always is! No matter what we're doing, as long as we're together as a family there's nothing better! I forgot to mention that Tyler and Marie came over too. We don't see them all that much so it was really nice for them to come over. I played with the children for a while, but I really wasn't feeling all that well, so I went up stairs to lay down. The house is usually very quiet but when the kids are here its insane! They're running and screaming all over the place! It's so much fun to listen to them. I went back downstairs after a little while and was playing dress up with them. Amelia had on a little bridal gown and veil then she tied on a Vampire cape that was from Marks Halloween costume last year. It was really funny. She kept scaring Peter and then they would all laugh chasing each other around and around. It must be so much fun to be a little kid and have not a care in the world. The other day I was helping Daniel look for his Scuba gear and while we were in the basement, I found these luggage cases that were my Grandfathers. I remember loving to look through them when I was a lot younger, but I couldn't figure out what happened to them. I was so excited that I found them so I brought them up to my Mom to show her. We looked all through them and they were mainly full of pictures. I absolutely love anything antique or vintage so this was quite a treasure for me. When everyone was over, we brought them out again. It was really neat to see the pictures of Mommy as a baby and all of her relatives. There was a lot of really old pictures with something in Italian written on them. I can't wait to have Elizabeth or her parents translate it to see what it says! Someday Mark and I plan to go and meet our relatives that we both have in Italy that we've never met before. That'll be so much fun! Maybe for part of our Honeymoon or something, I dunno. I looked through everything with my Mom already and the Children were pretty restless, they are definitely not old enough to appreciate or even understand what they're looking at or what the big deal is about it, so I took them out for a walk/wagon ride. Of coarse Benjamin didn't want to follow the rules so he didn't end up coming. It was Jacob, Amelia, Peter and Aaron. Peter and Aaron were in the wagon for most of the time until Amelia got tired she jumped in. We had such a fun time like usual! We went back to the house and it was pretty much bed time for the children, so they all got ready to go. Before that of coarse my Mom had to give Aaron a bath in the sink. She LOVES bathing the little ones in the sink. They just grow up and get to big way too quick! Usually all of the kids get to take a bath in Mom and Dad's jacuzzi before they leave, but not tonight, it was too late. I was so tired that I ended up falling asleep as soon as I heard the door close and the last little ones leave. It's amazing how beautiful of a sound that little feet chasing each other along with the screeches, screams and laughter bursting out of each child is. Pure Innocence, Pure Love and Not a Care in the World. What a life! I don't want them to ever grow up! I do not want them to be tainted or subjected to the immorality in this world. I Love them so much! I guess that all I can do is keep a safe place for them to always come to and lead with my example. I want them to know that I will always protect them and that they always have someone to talk to about anything, no matter what. As long as we put Heavenly Father first in our lives and everything we do, everything will always be alright.
*-Ashley-*

A Very Long, Very Tireing Day-I Just Want to be Home!

2008-06-19T23:04:00.002-04:00

Wow. I was so tired last night I fell asleep very quick and early. I was still up every hour or so, but not too much longer after I would wake up, I would fall back asleep instead of being up for hours and hours. Anxiety Much? I'm just like my Mother. When a problem arises just go to sleep. It'll still be there when you wake up, but for some reason its like you make it go away for a couple hours. My first appointment was meeting with the team of specialists all together. I had the hardest time trying to get out of bed because I was in a lot of pain and felt really nauseous. In general, mornings are really hard for me that's why I usually schedule my doctors appointments in the afternoon but for this clinic, I really didn't have a choice or much flexibility because it was imperative to stay on schedule. All together there were 14 or so different cases that the specialists had to get through. They are used to spending hours with a patient and they had about 25 minutes. My first appointment was with the team of specialists. Most of them were flown in from all different hospitals all over the country. My time with them was at 9:00 and I ended up being late. In order to stay on schedule, we made a different time to meet with them, and went on to the next Doctor. Following that, I saw a nutritionist, then a pain management specialist. I was one of two that got to have an hour with her. One of the first things she said was how little time we had to spend together. The others only got about 25 minutes with her so I thought I was lucky. Even that was such a short time because she told us that she is used to spending at least two or three hours with her patients. What an incredible experience it was in such a short time. I learned so many different things and she was so very kind. By the way she walked in, it seemed that she hadn't had it that easy herself. As much as I don't want anyone to suffer, typically, I guess I should say that in my experiences with Doctors, it makes them understand better and be able to give more personal suggestions versus what an article or a text book says to do. She was very humble and had so much to offer me. Continuing on with my day, it was my time to meet with the team of specialists. I found out a lot of new information and in the end, they asked me to come back for some further testing. I was awestruck at the compassion and modesty the Doctors upheld throughout the clinic. All they want to do is help. Now knowing that they want to help me and not use me as a Guinea pig, all of the uncertainty I had is gone and I am full of new knowledge. I am incredibly blessed in so many ways, and for all of these specialists coming together and asking me and only me to come back it isn't just the luck of the draw, it's Heaven sent. I have an incredible bond with my Heavenly Father and going through trials and tribulations, I have never questioned any part of my life here on earth. No matter what happens, I know that I have an eternal bond with my family, therefore I do not question when, why, what or how my life will be or how long I will have on this earth. There are sometimes when I feel that I would like to be home, home with Heavenly Father. But I know that I have a lot more work to do with my earthly life and a lot more life to live on this earth. Everyone struggles with something, but as long as you let Heavenly father and the Holy Ghost guide, as difficult as it is at times, I know that everything will be ok.
*-Ashley-*

On Our Way to The NIH- I really do NOT want to go...

2008-06-18T22:28:00.004-04:00

Today's the day we fly to Bethesda, Maryland to go to The National Institute of Health. Wahoo! NOT! I really, really, really, really, really, really do not want to go at all. I know that it's important to go and to learn, but more Doctors.... BLAH! I know I'm so mature.... So, here goes- get on a Plane- be uncomfortable for a little bit more then an hour then get to what's called The Children's Inn where we would stay for a couple days. Sounds easy but emotionally it's quite a roller coaster. Last night I was telling my parents that I was not going and then I was clinging onto Mark for dear life. I wouldn't let him leave. It was incredibly difficult to leave him because he helps me through everything. Always taking me to my Doctor's appointments and staying in the hospital with me. This one I had to do without him. My Mom and I went together and she is incredibly knowledgeable and she is comforting, but the last thing I want to do is make her worry more or vent to her while she is already suffering more then I am by not knowing what to do, how to help and especially how to help me have a quality of life that I am missing and make up for what I have missed by being sick. I know that it kills everyone around me to see me so sick and not be able to do anything but it really goes a lot deeper for my Mother. I love her so much and I don't want her to feel so helpless and sad, I can't stand that I make her feel that way. She knows me so well that even when I lie and tell her I am feeling well and everything is ok, she knows I'm not. I know that everyone deals with this in a different way and it's not my fault As much of a struggle as it was to pack my stuff and go, I made it. The flight was a little bit over an hour, I slept the whole way. Then we checked into our room at the Children's Inn which is walking distance from the hospital, and went to meet everyone there. We had a meeting and because I was a co chair person, I got up and thanked everyone for being there and said a few more words about how I felt and how much I didn't want to be there, and how much we all felt the same about the clinic. It's absolutely amazing that all of these doctors came together for such a rare disease, but I really do not want to go to six hours or something of appointments. None of us really want to be there but it is an incredible experience for all of us and for the future knowledge of finding a cure for this disease. It was nice to meet everyone and to be able to put a face to a name. We had a little Pizza party and then sort of went our separate ways. I ended up hitting it off with this kid named Bryan. He's really cool and we have a lot in common. (Other then the disease I mean) I was bummed to find out that he lived like a half hour away from The NIH and was not going to be staying over. It's nice to know that I've made friends with some of these kids and got to learn more about them other then the fact that we share a disease. I am really beat and I have a really long day tomorrow!
*-Ashley-*

I Got to Spend the Day with Mark Today.... Yay!

2008-06-17T23:10:00.007-04:00

Today Mark had an appointment in the morning so he took off work and we were able to spend the day together. That doesn't happen very often because he works full time and if he is home from work, he's sick. Needless to say, he doesn't get very many days off of work in general. We had some time to waste and his appointment was in New Haven, so we walked around for a while. It was such a beautiful day, the sun was shinning so bright. It was so pleasant just to be together, holding hands and walking around. Not knowing where we were going or what we were doing, but that's the best way. I don't get outside much so it was a really fun time for me. When we were finished there, we went to visit his brothers in Hamden. His brother Justin is a little older then him and his brother Nicolas is 6. Now that Nicolas is out of school for the summer, Justin watches him full time. It was really nice to see them because we don't really get to that often. Man, Nicolas is so smart! He's amazing! He kept correcting me on what kind of fish and sea creatures were in his books or on TV. I picked up his toys and asked him what kind of whales and other animals they were and he knew them all. He's like a little sponge- telling me the whole story of the Titanic and other ships that were in the ocean. We didn't stay that long because I wasn't feeling that well, I wish we could've stayed longer but soon enough we take Nicolas camping or something like that. All and all, we had a great day! How could we not- we were together and with some family, there is nothing better then that!
*-Ashley-*

Picture's From Father's Day and Amelia's Birthday Party

2008-06-15T23:14:00.002-04:00

Happy Father's Day and Happy Birthday Amelia!

2008-06-15T23:00:00.005-04:00

Last night was a wonderful night. I wish that it wouldn't be raining so much so I would be able to feel better today but C'est La Vie. Dad was in our ward today and I wasn't able to go to church so that really wasn't how I wanted to spend Father's Day. He came into my room after church to see if I needed anything and he said that all he wanted today was me to feel better. Those are some pretty heavy words especially on Father's Day. The plan for the day was that everybody would come over at 5:00 to celebrate Father's Day and Amelia's 5th Birthday. Its always great to have everyone here, but its especially fun when people we don't expect to see visit. I grew up with this guy who was Michael's age and knew my family before Tyler was born named Josh Ball. No one had seen him or heard from him for years and he came to visit us. He is like my long lost brother. I grew up with him for a while but I was so young that the memories are there, they are just buried deep underneath a lot of other memories. I looked at him and I knew exactly who he was and it was almost like he never left my life. I must have spent a lot of time with him because it wasn't strange to see him, it was like he never left. He has such a calming spirit about him, just peaceful and content. So his personality mixed with my memories of him seriously was like he never left. He lives in Seattle with his wife and son. I guess his father lives in Branford, so he was here to visit on Father's Day and made time to see us! Perfect day because pretty much everyone was over including Daniel was down from Vermont and Tyler. Michael and Elizabeth were not there, they probably went over to Waterbury to visit Elizabeth's Family so we missed them a lot. All the kids wanted to play outside so I went out with them and we ended up going over to visit our next door neighbor and one of my best friend's Heidi. After the older boys, Jacob and Benjamin cleared us a path through the wild wilderness with their swords and Light Saber killing all of the trees that were trying to eat us and the vines that were trying to wrap around our feet and froze the Hot Lava so we could walk through, we made it to Heidi's lawn! As soon as we were on the deck of Heidi's house, Benjamin and Peter decided to leave because they were scared of the Dog or something. But Amelia, Jacob and Aaron continued with me. Man Aaron is heavy for me to carry! Jeannie is amazing in so many ways, but to be able to hold him all the time is quite a feat! Anyway, we snuck in the backdoor of Heidi's house and the Dog didn't even hear us! Heidi was very happily surprised to see us. We ended up seeing Mr. Seib, Mike and his girlfriend and of coarse Nate the Doggy. Nate was so scared of Aaron for some reason. He kept hiding under the table from him. It was so funny! Poor Doggy hasn't ever seen anything like Aaron so he didn't know what to do! After a little while he came out and Mr. Seib showed Amelia and Jacob how to give cookies. He came out and they gave him some treats and then he was quite happy! We said Thank You and Good Bye and went on our merry way back through the enchanted forest (Maybe 10 or 15 Feet of woods between our houses) With Jacob in the lead killing the trees and vines that were trying to eat us and freezing the hot lava on the ground beneath us so we were able to walk back to the house. By that time I was so tired and needed to lay down but I really didn't want to! The day was very fun and we had a blast together like usual! Many surprises made it even better! Oh what a day what a day! I ended up eating Ice Cream cake for Amelia's Birthday in my bed and falling asleep to the wonderful sounds of children screaming, running after each other and the sweet pitter patter of the littlest ones trying to stay up with the older ones. What a wonderful Life I have, I couldn't ask for anything better!
*-Ashley-*

Saturday Night... I Need to Get Out!

2008-06-14T23:00:00.003-04:00

Well, of coarse today is Saturday and all I want to do is go out and I feel horrible! The weather is overcast and rainy, thundering and lightning at times... I don't know what to do to feel well enough to get out of bed! I have a huge migraine and I'm really nauseous. Any who, my parents came home in the evening and Mark wanted to take me out to dinner, but I just don't feel well enough to do anything. It's one of our friends birthday parties tonight and there was supposed to be a big bonfire and a lot of people there, but the weather really wasn't holding out for anything outdoors especially a bonfire. I want to go so bad, but I can't be around smoke and I know that people will be smoking inside because of the rain. LAME! I haven't gone out for a few weeks now and I really am getting sick of not being able to. My brother Dan and some friends are down from Vermont staying at my brother Tyler's house, so I think I am going to go there. I haven't been able to go to Vermont for a long time so it'll be really nice to see my brother especially but his friends Deb and Mike I really haven't seen in way to long, so I'm excited! I guess there is a bunch of people over my brothers that I don't really know, but whatever.
Turns out that the people I didn't know were really, really weird. Honestly, I am totally excited to meet new people and usually open to whomever, but Wow. That's about all I can say. Tyler and Marie (My brother and his fiance) really didn't have any clue at all what the heck was going on or who they were either, so that was pretty bad! I didn't introduce myself to them which is totally out of the ordinary for me and I literally had to not even look their way because what they were doing was so wacky. I sound so mean but really it was very strange. No one could really say anything because no one really knew who they were or really what was going on. All I know is that they were friends of a friend of Tyler's. We all could've done without them there but ohh well- just another one of those crazy experiences that life likes to throw at you to make you think real hard and try even harder not to judge. Anyways, Tyler and Marie got a Nintendo WII, so I played some games with Tyler's friend Rachel, my cousin Adam and and a couple of his friends for a bit. SO FUN!
Basically just listened to music and chilled. Always a fun thing to do even when I am not feeling well. I love my brothers so much and I wish that we could spend more time together like that but Daniel lives in Vermont and runs his business up there, so he can't really come down to often. Plus he's got his Boat that he goes fishing off of almost everyday after work, typically with Deb and Mike or some guys that work for him. He's got a bunch of quads, dirt bikes and snowmobiles and a couple hundred acres of land at my parents house that's about a half hour north from his house to play on, so really its way more fun to go up there and visit him, especially with the common love for hobbies. The ride is only a couple hours but I can't really drive that far and I can't ride in the car for that long. LAME! Somethings gotta give! Hopefully soon enough my Doctors will figure out what is going on with me so I'll be able to get up there! Ohh yea, and function in my daily life... I guess in the mien time I just have to take advantage of when they come down here! Life, well I should say actually living is such a blast!!! I can't wait to be able to do it more often! This week I go to The National Institute of Health for a Pediatric GIST Clinic. All I can do is pray that the specialists that are going to be there and the others in the clinic will be able to find out something more. Something that could help us have a better quality of life and for the younger kids, help them live. I'd much rather be sick then these poor little ones. I wish I could take away their pain and illness so they don't have to continue to go through what they are and so they would be able to live a normal life. Put everything behind them and be normal kids. Forget the negatives and worries. They have plenty of time when they grow up to worry about things. I know that everything happens for a reason and whats meant to be will be, I just wish that all of this could be a forgotten tale in their life stories. Wounds heal with Scars to remind us of what we've been through. But not having a normal childhood especially when it is filled with worry and fear is irreplaceable. I've missed a lot of life and memories that are irreplaceable in my lives journey, But I wouldn't change it for anything and I wouldn't wish it on anyone. I sincerely hope and pray that we will be able to get some answers this week at the clinic so all of this can be just a flash of a memory for these little ones and they will be able to really live life. Tonight I got to live. I was around my Brothers, my cousin, and friends that genuinely care and love me. I made memories with them and it was fantastic! Life is Wonderful.
*-Ashley-*

Friday Night... Parents in VT... House to Myself... YAY!

2008-06-13T22:43:00.002-04:00

Well- earlier in the day today, my Mother and Father left to spend the night in Vermont. It's always nice to have the house to myself, especially the fact that I don't really leave, I don't know I guess I feel almost independent. Nothing changes, I do the same things I would normally do when they're home- Typically nothing, Laying in bed like usual. FUN FUN FUN... But anyway, Mark was babysitting me- Acting like Mom, getting me Popsicles and helping me get up when I needed to ect. He's a good boy. I really wanted to go out but he was tired from work, so I suggested having some people over and he shot that one down too. So, we watched a movie and went to sleep. YAY! I still haven't left the house and I am going crazy! I don't know what to do with myself. Anyway, life is grand...
*-Ashley-*

Happy Birthday Amelia!

2008-06-11T17:42:00.003-04:00

Well, today is Amelia's 5th Birthday! Its absolutely unbelievable how quick these kids grow up. I've been having a really hard time with my body, especially my lungs and ribs. I have this unbearable pain for no reason apparently. I called my oncologist Dr. Kortmansky in the morning and I waited all day long for a call back, so I called in the evening and he told me that the pain I have been feeling is from fractured ribs and because of this ridiculous pain, I've had incredible fatigue. It's absolutely amazing what can happen to your body and how it deals with the problem and what you can bounce back from.
My body has given me so many problems on the inside but on the outside very few times I have looked sick. And that was only to the people who know and love me the most. That has been an amazing struggle in every aspect of my adolescence because of disbelief from Doctors, the people who have the knowledge to help me and everyone else in my life because they see a normal exterior, therefore they do not understand how I am feeling and what is really going on inside of me. Also, they do not want any bad for me so they don't want to believe their is anything wrong. As long as I look normal, I am normal and there is nothing wrong. The only exterior sign of this disease are my scars. Pain is a constant reminder to me that there is something wrong and I am not like everyone else. Everyone struggles with different issues throughout their lives but some are misunderstood like mine. I don't know why I continue to struggle, but I do know that the only way to endure through trials and tribulations is with help from Heavenly Father and Jesus Christ and surrounding yourself with people who love you unconditionally. I am incredibly blessed with Family, Mark my boyfriend, amazing Friends and people who come into my life day to day for reasons unbeknownst to me. As I struggle to survive mentally, physically and emotionally, I would not trade my life's experiences with anyone or for anything. Again, everything happens for a reason and I may not know why at this moment but I do know that as long as I persevere through these experiences they'll help to make me a better person and help in the development of who I will be in the future. I hope that I can use my experiences to benefit others and be an example as well. I just need to hold on especially when I feel like letting go.
*-Ashley-*

Another Wasted Hospital Visit!

2008-06-10T22:57:00.004-04:00

Well, I have no idea whats the matter, but there is something majorly wrong. I never get Fevers, NEVER. I am incredibly sick. I can't move- I am sweating and freezing cold. I spike a fever and then I'm boiling hot and freezing cold in seconds. There is no rhyme or reason for what is going on with my body. I can't stand it! I was told to go into the hospital a few days ago but theres never any reason for my symptoms. My white cells were ridiculously elevated then there fine now. I probably have pneumonia or something. I got an X-Ray of my chest and nothing is the matter. Supposedly- I know there is something majorly wrong, but I don't know what. Matthew came over and carried me to the car, Mom took me to the hospital, then Michael and Mark met me there. They did this crazy blood test that I've never seen before. It's like a Petre Dish in a Bottle. Kinda creepy because the bottles look like Tabasco Sauce bottles. They take the test twice a half an hour apart I forget why they said, but its really interesting. I was telling the nurse about one of my brothers that would be interested in it- Michael, and he walked in right then. My Family is amazing. I don't ask, they just know. I am so blessed and incredibly grateful for everything. Mark stayed with me like usual and then he helped me out to his truck and get this- with his incredibly sun burned back, he lifted me out of his lowered truck and carried me all the way up the stairs into my room, onto my bed. How did he do it? I dunno because I defiantly weigh more then him- He Loves me so much, that's how! As hard as it is to deal with some, well most everything, I couldn't do it without my loved ones.
*-Ashley-*

Happy Birthday Amy!

2008-06-07T19:03:00.002-04:00

Today is my big sister's Birthday! She is in Washington State with Cass and Norah visiting her in laws because her Father in Law has recently been in the hospital and they haven't seen them for quite some time. I wish we could celebrate with her today, but I understand. They'll be flying back home tomorrow so we'll be able to celebrate soon enough! Anyway, Amy is 11 years older then me... CRAZY!
Unbelievable! Since I was two weeks old, she would steal me out of my crib and take me into her bed. She slept in bed with me up until she left for collage. When I was little and peed the bed, basically on her, she'd wake up and switch beds from a Queen to a Twin. Night after night. She is such an amazing example as a Daughter, Mother, Sister, and Child of God. She has always been very righteous and shown me how to be a good person in general. I do not know what the future holds for me, but I do know that I have an amazing Sister to help lead and guide me through anything and everything that life will bring. I am forever grateful to have her in my life and we have each other eternally. What could be better then that?
*-Ashley-*

I Really Do Not Want to Go to the Hospital!

2008-06-05T18:34:00.006-04:00

Urg- I'm so sick. Somethings going on with my lungs. It hurts to breath- like burns and I never have fevers and I have a fever. I aspirated a couple nights ago, I know that didn't help but I don't know what to do. I'm so frustrated. Everything is so complicated. Why can't it just be simple? Just for a moment... The Doctor wants me to go to the Hospital, but I really do not want to, so I'm not! Anyway, just another day in paradise!
*-Ashley-*

So Sick... Can't Move...

2008-05-27T23:01:00.003-04:00

My body hurts so bad, I can't breath. I've got some Flu and Lung something. I can't go to my oncologists appointment today because everyone at the office is so frail-I can't afford the chance in getting anyone else sick! LAME! Dang it! Mark is out of work because he's so sick. We both can't move because were so weak. Everything hurts so incredibly bad and we can't stop sleeping. Headaches, Vomiting, Post Nasal Drip, Clogged Noses, Everything you can think of- we got it. Lots of Fun! NOT!
*-Ashley-*

Ohh Yeah Baby... Flu it is!

2008-05-26T23:50:00.003-04:00

Well- My Family is still in Vermont. Happy Memorial Day- My Father served in Vietnam- My Brother was in the Navy- We're so blessed to have those in our Country that have fought and will fight for us. Speaking of which, Vinny wasn't able to go to Afghanistan because he has Bronchitis. He doesn't smoke and he had this horrific cough and I told him that something was up! Poor guy- well this could be a blessing in disguise who knows. Anyway, turns out that Tyler has some ridiculous upper respiratory infection with underlying asthma also. So- I have no clue what I've got but I sure hope it doesn't get worse then a little Cold/Flu thingy! I have an appointment with my oncologist tomorrow, can't go to that for the other patients sake. No reason to make anyone else sick. I am real dizzy and feel real faint. I passed out in the shower, again. Mark heard me and knew I did, but I told him I was fine. He gets so mad when I lie to him but the last thing I want to do is make him worry about me more. I am having so much trouble with my body. Its not fun at all. I don't have any idea what to do. Just keep on praying I guess. It's so hard to not give up.
*-Ashley-*

UTOH... I Think I'm Getting Sick!

2008-05-25T22:22:00.003-04:00

Last night was incredible. I wish that Eddie could understand how grateful and meaningful that was to me. He's a real good kid and I'm happy that Mark and I can find some new Friends that are good people and care about whats real not just drama- YAY! And we all share the same interests! Whats better then that? We really don't do anything and I don't go anywhere so this has been quite a Godsend. A group of people that we've known or are getting to know who've changed if they needed to or are just genuine in general. Yes- that's quite a mouthful, but it's very true and I am very excited to be able to get out of the house if I am feeling well enough, to be around people that I know genuinely care about me and to have a good time no matter what we're doing! Things are turning around. FINALLY! I can't ever win- Today was a huge BBQ and Party and I am getting sick, There is absolutely no way I could go. Darn! Ahh well- Whatever I probably will end up seeing someone that I really didn't want to see or something like that. I went out two nights in a row tho... AMAZING! Yep, I am.... I am so blessed! I just hope this sickness isn't serious!
*-Ashley-*

Bonfire at Eddie's- I'm so Excited!

2008-05-24T22:58:00.002-04:00

Oh- I haven't been to a Bonfire in so long! I feel like garbage- my Family is in Vermont for the weekend and I really don't feel like driving up there so I'm staying home. I have a lot to do from vacation but I need to rest because I don't feel well- I am so frustrated. It's nice getting out with friends, even tho I have a lot to do and don't feel that well, so Mark and I decided to go to North Guilford to a mutual friend Eddie's house. Eddie is 20 with his own Landscaping business and he lives with his Mother by this beautiful lake. His lawn of coarse is manicured perfect, including a fire pit. It's incredibly quiet with absolutely no light pollution, so you can look everywhere, every way and see the Moon and Stars. Mark and I were so envious of him! We want to buy his house so bad! He's got a pool and a Hot Tub too! Ohh and a garage that can fit two lifted trucks! It's perfect! Someday! I can't wait to go there again! It was such a great time- we stayed until the sun came up and the birds were chirping! The Sunrise was incredible- everything was. I can't wait for more fun times at his house to come! There's nothing like being surrounded by good people in a beautiful place! Thanks Eddie!
*-Ashley-*

I Havn't Had That Much Fun in Such a Long Time!

2008-05-23T23:07:00.001-04:00

I didn't sleep last night that much because I'm still so worried about the PET/CT scan. I still don't know what to do to master the skill of not worrying so much when I get scans or endoscopes- anything having to do with the possibility of finding more wrong with me. Dr. Greenwood called- so weird to call him that because he's a friend of the family that I've known forever. Anyway, he is an Interventional Radiologist at St. Raphael's which is the new hospital that I've switched to from Yale. So every time I get a scan he'll quickly tell me the results- which is amazing that I don't have to wait at least days, usually weeks, to get them from my Oncologist and he'll reread them himself and with the best of the other Radiologists at the hospital. He's amazing to say the least. I'm blessed in many ways- this is another incredible one. My body is clear and whatever lit up last time in my gut didn't light up this time, YAY! But the Chondroma in my lung grew- Not good. I don't know what to ask for tho because I am in so much pain that I am almost wishing there is a concrete reason for it. It's abdominal wall pain which is incrediably real, but you can't see it so its frustrating to express it without someone able to see it, therefore hard to believe its really there. Its all a mind game. A really sucky one at that. I had to go see Dr. Cohen my Gastroenerologist this afternoon, so Mark got out of work eairly then took me. There really wasn't much to say. Nothing to do but what I'm doing and actually the doctor was laughing because I was informing him of more about the disease and some other things then he was telling me! Mark took me out to lunch after. It was so good! Then we went to our friend Tylers house. A lot of people were there that we could've done without, but all together, it was fun. We stayed until 3 or so in the morning- I was playing the Nintendo WII thing- it was amazing! Its really nice to get out of the house especially to spend time with friends that are good people. I havn't had that much fun in a long time!
*-Ashley-*

Another PET/CT Today... Yay...How Fun...Not!

2008-05-22T22:41:00.002-04:00

Oh Boy! Today I got to have a PET/CT at St. Raphael's. My Mom took me because she had an appointment right before mine, right down the street from the hospital. She had some surgery on her foot and she's been so worried that she'd done something wrong or used it too much and to her surprise- the doctor said that it looks way ahead of schedule. So all that worrying for nothing! We saw her Doctor real quick then went to the hospital for my appointment- This time I had to drink Barium... YUCKY! I guess the new doctor in charge said so for the CT part... That's not fun at all... Man, its so frustrating dealing with all of the anxiety that goes along with the scan. I was up all last night, too scared to sleep thinking about what could be the results and I know I will be up all night tomorrow until I get the results back- hopefully before I see Dr. Kortmansky (my oncologist) on Tuesday. I dunno- I'm so tired of all this pain all the time and I wish there was an answer but at the same time an answer is usually a bad thing so I don't know what I want. I know that I wish I had problems that were simpler. That would be amazing! You have to fast so I got a hot dog from the hot dog stand outside... It was so good! I usually can't eat meat at all but I ate that- real good! Then I went to run into TJ Maxx to look at swim suits and ended up spending almost 3 hours and a lot of money- but theres nothing like shopping to forget all of your worries and make you happy! Very temporarily... But, this is my life and I am dealing- well trying to deal with it. I'm so blessed with such a strong support group in my Family and my Boyfriend, Mark. I don't know where I would be without any of them. But there is something about Mark in particular that is so incredible. So special. He's always there- no matter what. He loves me for me and wants me to just get better. That's all he asks of me. He works so hard all day then he drives 15 to 20 minutes past his own home to see me only for a couple of hours. Then turns around and goes home and does it again the next day. And when I'm in the hospital- he sleeps in one of those cheesy hard chairs, not even a recliner- we never seem to get one for some reason and stays with me the whole time. Gets up for work at 5:00 after barely sleeping and then he comes back between 4:00-6:00 at night and does it again until I'm out. Incredible. I can honestly say that I would not be here if it was not for the support of my Family and especially Mark. He sure is Heaven sent. I am the luckiest girl in the whole wide world!
*-Ashley-*

Another Day...

2008-05-20T23:42:00.003-04:00

Well- I don't know what is going on with me. I called the Doctors today to see what to do about this pain. This pain is ridiculous and will not go away. There is nothing to do but try and endure through it because I've gone into the hospital numerous times and they do all the scans but find nothing. The only thing that the hospital can do for me is give me better medication to control my pain. That's just a band aid basically. I dunno what to do! Nothing is long lasting. It is very frustrating. I've been searching and praying like crazy for some sort of relief or answer and nothing has come from it. It is very discouraging. I really hope that The NIH clinic will have some sort of answers! I know that its not just me- Very frustrating tho. I've got a PET scan on Thursday, I see Dr. Cohen my gastroenteroligist Friday and my Oncologist on Tuesday. I really hate to see the doctor, but I have to. Anyway, Amy stopped by with Amelia and Norah. Norah is getting so big! She's been smiling like crazy and laughing. She has quite the personality! We snuggled for a few minutes then Amelia had to go to a Birthday party so they had to leave. Not cool at all. I love that little cuddlier. I can't believe she's already Four months old! It's crazy how fast time flies! Gotta take advantage of every moment and make it count! Don't waste time with people who aren't uplifting. Don't waste time fighting with the ones you love over stupid things that don't matter! Think about what matters in the end- And remember you never know what could happen in a split second they could be gone.
*-Ashley-*

Pictures from My Trip to Florida

2008-05-17T06:02:00.001-04:00

Kids In the Bath Tub!

2008-05-08T20:55:00.002-04:00

Elizabeth had something to do this morning, so Sammy came over to play. That was a great surprise to wake up to. He only stayed a couple of hours, so he left at about 10:30, which I wasn't too happy about- But Liz had things to do, places to go, people to see and I have to be ok with that. Even tho I'm sad. When there is just one of the kids here or just one family here, I try and soak in as much of them as I can because I don't get to go to their houses that often, well pretty much not at all. When I see them, especially one at a time or one family at a time it's great to see there own personalities come out. They're without all of the craziness and chaos of the others, so they don't follow each other or act different. Its really nice. But Man Sam is ohhh- I could eat him up! He's so cute. Such a boy. Such a sweet boy. He loves to sword fight and wrestle around, all that boy stuff- But at the same time, he's such a little flirt! You try and get mad at him for something, but it never works to yell at him because his little face is too adorable! Mark seems to favor him over the others- Well we don't see Sam and Bella nearly as often as the other Children, And Sammy looks like such a little Italian boy, sort of like a Mini-Me for Mark. I think that's why! We don't pick favorites, but for some reason, Sam seems to have Marks heart. I dunno. We love them all and definitely have fun with them all! How could you not? Later on Amy brought Jacob, Peter, Benjamin and Amelia over to come and play. They ordered Chinese Food and by the time everyone got ready to eat, ate, then cleaned up it was pretty much bed time. They all need to take a bath, so they all took one together. They love Grandma and Grandpa's Bath Tub because its huge with lots of jets in it- so they get to be in a jacuzzi. It's always so funny to watch them make Santa Clause beards with the soap bubbles and Mohawks with Shampoo while they're getting their hair washed! They’re all so cute but very crazy! I mean VERY crazy sometimes because of the fact that they are so excited. They splash everywhere and jump up and down- almost like they are in a pool outside. As long as they're not ruining anything then its a non issue. How cute are they that they invited me to join in the tub, all four of them, I passed of coarse- everyone is a little bit old now. Ben is 7- before that, it was ok. Not so much anymore. Its a bit squished with one of them and I. I couldn't imagine four! Ahh... What a night! I am so beat! I still hear them running around. I wish I had 1/4 of the energy the Children have! Well, Goodnight!
*-Ashley-*

I Got Out of Bed Today… YAY!!!

2008-05-07T23:48:00.001-04:00

Last night I couldn't sleep, and I felt a bit better so I was able to go through some clothes and get my stuff out and ready to be packed! I know I need to get some stuff done before I go, so I decided to go to the health food store and get some whole food bars- 10 Grams of Protein in one little bar- Good Deal. Then I met Mom and Amelia to get our Nails done. That was very fun. Amelia is so cute. She got her fingers and toes painted- of coarse with glitters on them! I ended up getting a couple things for Mom in this store next door to the nail place while I was waiting because of coarse it goes from just the three of us to the whole world in next second. I wasn’t in any hurry so I let some people go ahead of me. After she finished my toes I went over to Radio Shack and saw a mutual friend of Marks and mine that I hadn’t seen in a while, so that was nice. He lost his Father to Cancer and as a result we’ve always had this sort of understanding of each other and he’s a kind kid anyway, he’s just always been a bit extra kind to me when other weren’t because of that. When I was getting my manicure, my sister came in to get her eye brows waxed with Norah. Then this kid named Tyler who’s another mutual friend of ours came into say Hello to me. That was quite a surprise. He’s definitely grown up a bit to do that! I was just about finished and my phone rang, and it was Matt. He’d just dropped Jeannie off at the airport and wanted to mow his lawn, so he asked me if I would watch Peter and Aaron for bit while he did that. We played outside for a while then I helped them with dinner. By that time, Matt was well done.
I took off and man was I tired! Today was a long day- Long day but great that I got out and was able to get some things done! Just hope that tomorrow will be at least as good so I can keep going with my progress of getting ready for Florida. Yes, I have two days to get ready but I don’t know how I’ll feel those two days, so I’ve gotta do what I can when I can!

*-Ashley-*

Urg.... I'm So Sick of Being Sick!

2008-05-06T10:01:00.003-04:00

My Mom is out of town today and my Dad is at work I don't know what to do! Yesterday I washed my sheets and was so sick I slept without them on my bed. This is craziness! I really have no clue in what is going on. My body is so tired, I can't stop throwing up, I guess its just cycles I go through. Really frustrating, tough times tho. Just gotta try and keep my head up I guess!
*-Ashley-*

These Boys... They Kill Me...

2008-05-05T14:28:00.006-04:00

I got a nice surprise this morning... I heard little feet and opened my door and it was Peter and Aaron! I definitely was excited. They make me so happy! Jeannie was only going to be gone for a little while, so I had to hurry and take advantage of them while they were here. So we started off in Grandma's room- they love the water bed. I was throwing them onto the bed and they laughed and laughed! Then we did some laundry. Peter was a real big help with that. Ohh- he was wearing big boy underwear today! That was very exciting. We gave him some tic tacs so every time after he went potty, he got one. He put them in his pocket so as he ran around, he would hear them and it would make him want to go, even if he didn't have to. We went downstairs and made some lunch. Peter wanted to cook the soup on the stove, so he made his own lunch! Both of the boys ate then we played with the animals for a while. We fed the Sea Monkeys, Changed the Snakes water. We pet the kitty and gave the hamster food and treats! Soon after, Jeannie came to pick the boys up- Too Soon! We had a blast! Thanks to them, I got out of bed, I did some laundry, including washing my sheets, I fed my animals and had fun doing it all! I love these boys!

Sunday- Not So Fun of a Day...

2008-05-04T22:17:00.002-04:00

Still tired.... Still sick... I don't know what is going on. I want to go outside so bad but I'm so sick. No Fun. I dunno- Stuck in bed- What to do... What to do....

Video Games, Video Games and More!

2008-05-03T23:18:00.004-04:00

It's one week until I go to Florida! I am really excited! Just got to get to feeling better, so I'll be able to make the most of the trip. The new Grand Theft Auto came out so Mark got it for the XBOX. Oh my goodness, now my room has a TV just for that! I also have rock band all set-up. Of all the video game systems that we have, my favorite is Super Mario! Anyway, I am trying to pack and get ready, little by little- I just have to feel better!
*-Ashley-*

What's Better Then Babies When You Don't Feel Well?

2008-05-02T22:16:00.007-04:00

I had another hard night without sleep. But I guess that's just how it is! I have no idea what to do with myself- No idea at all. I've asked my Doctors what to do and they've done the tests and like usual they're puzzled as well. My Father is obviously very frustrated just like everyone else is but his personality is more aggressive then to just say ok no one knows anything and that's ok- he gets really angry- I am his Baby Girl and all and I am suffering so it makes sense. But there never seems to be an answer. I am so used to it that I guess I just say ok because there is not getting to the bottom of anything. There never is. So for me, I'm used to suffering because of no answers I guess I've become ok with it because if I become negative, I believe I'll just make myself more sick. Anyway, someday life will go my way. At least I hope so. I heard some little noises in the house and it turned out that it was the babies! Peter had to go to the doctor so my mom was watching Aaron and Amy came by with Norah. So I layed with them for a little while. That sure brightened up my day! I love them so much it's amazing to watch them grow- every time I see them, they've changed! It's absolutely amazing! Someday, Someway, Somehow, I know I will be blessed with the magnificent gift of Motherhood. In the mien time, I'm blessed to have so many little ones to keep me content!
*-Ashley-*
Ohh.... Funniest Thing... Aaron knows how to pick his nose now! Its so cute- For now that is... Not when he gets a little older- Yucky!

Purple Rice Crispy Treats...Yummy!

2008-05-01T22:57:00.004-04:00

I didn't sleep again! I don't know what the heck is going on but its really bothering me. I have such a horrible migraine still. I have to feel better because I need to start packing- I'm going to Florida in 9 days. I'm excited, that'll be really fun! I couldn't move out of bed all day, then the door bell rang and it was Sophia. I thought she was looking for Amelia, but she was looking for me! Last time she came over she was asking if we had any Rice Crispy Treats, so this time we made them. On Valentines day, I made a heart shaped one for Mark and colored it Pink with food coloring, so I asked Sophie if she wanted to color them. She decided Purple. So we mixed red and blue... Very cool! After we made them and cleaned up, we went back over to her house and I met her babysitter. She was watching the twins while Laureen was getting her hair done. The boys are 17 months old. They're so cute. I stayed over there for a bit to try and help out because the boys weren't very happy and the babysitter was definitely at her whits end. Shes a really nice girl- the nicest and most responsible one I've met so far. I really like the Pompelli's. They're great people. Laureen told me to come over anytime which is a great thing for both of us because it makes me get out of bed- She gets to catch a break- The kids make me happy and take my mind off whats going on and they're right across the street so its no big deal if I'm tired or anything and need to go home. Everything works out perfect! Of coarse it does because it involves kids, and whats more perfect then them?
*-Ashley-*

Same Thing... Different Day...

2008-04-30T23:54:00.003-04:00

I had an appointment today with Dr. Cohen, my Gastroenterologist but I just couldn't make it. I have a horrible migraine and between the weather and who knows what is going on with me, I am having the hardest time getting out of bed and eating is really a challenge. Maybe my body is still recovering from Carlisle- I don't know. Everything is always a mystery with me! Fun, Fun, Fun! Mom picked up Amelia from school, then she had to go to a Doctors appointment, so I watched Amelia. Good thing shes content watching cartoons and pretty much completely self sufficient because I am so sick! We have fun anyway-And she surely brightens up my day! Amy came a couple hours later and brought Norah up to see me... I Love that little gurly soooo much! She was so tiny and now she's getting chunky! She is absolutely adorable... Her little smile and all the cute squeaks and coos she makes- She sure makes me feel better! She's growing up so quick- all of the kids are, its crazy! I've got to keep on making memories with them because before I know it, they'll be in college!

Just Another Day in Paradise...

2008-04-29T22:51:00.005-04:00

I'm so tired. I want to sleep so bad. It doesn't matter what I do, if I play with the kids all day long or I swear if I ran a marathon it just doesn't help me to be able to sleep. I'll just be more tired and in more pain. No matter how much I, or someone else tells me that everything is ok and there is nothing wrong, self hypnosis and other types of relaxation it doesn't seem to help. I just read the Scriptures and Pray- It's so hard to keep doing because I get so discouraged! I'm in so much pain and I don't know what to do or I guess how to deal anymore! I just can't sleep! I'm so physically, mentally and most of all emotionally drained! Oh- I wish so bad that I could go one day without feeling something wrong. I wish I knew what it felt like just for a moment to feel normal- whatever normal is. I wish that this Little Fairy Tale Life that some people think I have- I wish that it was real. I wish that the hardest thing I had to do was to get up in the morning to an alarm clock and go to work all day. I wish I was like everyone else in the world. I like being special, but not because of a terminal, incurable disease that is so incredibly special that no one knows much of anything about it. So many people complain about their jobs and how much they hate them, but they can get out of bed and go can't they? I wish that people could just be grateful for life and living. Now that's where I come in- I get to share my experiences with people so they can hopefully take a step back and realize, Hey I Got Out of Bed Today! And Maybe They'll Look Around and See how Beautiful Life is!!! Remember, Each new day is a gift from God!
*-Ashley-*

Rain, Rain, Go Away You Cause Me to Have Such Dreary Days!

2008-04-28T23:05:00.003-04:00

April showers bring May flowers... Hummm.... Any showers seem to make me feel like garbage- more then usual! I really don't like that. The drop in Barometric Pressure gives me a huge migraine. No fun! I had an appointment with the Oncologist today- nothing new. Just have to get repeat scans and all that jazz.
Mark usually takes me, and since it was so rainy out today, he was out of work early, so we did our typical go to the doctor then after go to Katz diner and get Hot Pastrami Sandwiches. That place is absolutely amazing! It definitely makes the doctors appointment almost worth it! I wish I could eat without it hurting for once! That would be nice... C'est La Vie...
*-Ashley-*

Still Holding On...At Least Trying To...

2008-04-27T23:45:00.006-04:00

Didn't sleep much last night. I went on a ride and ended up at the Beach for a little while. I just sat there and remembered how many times in the past 6 years I'd gone there and been so sad. That sort of brought everything that's been bothering me to the surface and made me realize why Mark comes with me to the Beach and I don't go by myself. If I go alone, all I do is think of everything that's negative and it makes me more upset. When he comes, we actually are able to talk through feelings and make make sense of them or make them go away. And most of the time we just end up laughing and joking or seeing friends, fishing something fun so the sadness is completely forgotten. I just can't seem to talk to him and tell him how much I need him. I feel like I'm weak in doing that- same with crying. If I cry I am showing a huge sign of weakness. I couldn't stand to be by Mark with him thinking I was mad at him- That was the only reason why I got out of bed.I'm really not doing well and I am really sick of complaining. I'm frustrated with getting so mad at nothing for no reason and I can see that the light at the end of my tunnel is getting dim. I'm so tired- no matter what I do- I can't sleep. I really don't like pretending anymore. I have to go to the Oncologist tomorrow and that definitely doesn't help anything because of the fact that I really hate going to the doctor. I don't know.... Life is full of way to many curve balls right now. I really would like to be able to catch a break. I need help- I really don't like when my prayers seem unanswered. Yes- The Lord works in mysterious ways- I just wish sometimes it these ways were more obvious then others. I know I need to open my eyes wider and listen a little harder to hear what it is I'm missing from these tribulations. I just need to keep on praying and reading the Scriptures. Between those, the answers to anything and everything lye within.
*-Ashley-*

Hope Is Not Lost

2008-04-26T22:37:00.005-04:00

That was a really fun trip yesterday. Hard ride in the car, but really fun. Today I am having a hard time because of a number of things but that trip took a huge toll on me. My Dad said he didn't expect me to get out of bed for the next few days,but that's not the reason why I'm angry. I'm having a hard time with a lot on my mind and its not fair to vent and by vent I mean scream and yell for no reason at the ones that I love the most and are the closest to me. So, I just won't talk. Pretty simple. If I open my mouth it's pretty much like a dragon breathing out fire. And that's not ok. I'm so sick of my frustrations and anxieties wearing on my relationships with my loved ones and I'm so over feeling like crap all the time and not being able to do anything about it. When I try- it just makes it worse. Horrendous Aches and Pains for no explainable reason at all and the second I go one step forward I fall ten steps back. No- I'm not giving up because failure is not an option and has never been, hence me being alive. But I am an all or nothing person and I've been teeter-tottering for six years now and its absolutely ridiculous. No matter what anyone says there is nothing that I can do more then what I have been doing because I've been in Survival mode for so long. And in order to be happy, I need to feel well and I just don't ever feel well. Yes, little things do make me happy but only for a second until feeling like garbage takes over no matter how much my mind may be occupied. I don't know what to do anymore, I have no idea what it feels like to remotely "Feel Good". All I can do is keep praying and hold on to the few strands of Hope I have left. I keep telling myself- Hope is Not Lost. Today is the anniversary of Callin's Death so pile that onto everything else... I had to get out of the house for a bit, so I went on a drive. I went by Sue's and her bedroom light was on and her car was there but when I went in, no on answered when I yelled. I sat by the pond- then went to the beach for a while. I looked at my phone and realized that there was no one that I could call who could comprehend what was going on with me. No one I wanted to talk to either. The ones who know me the best and understand me the most were wondering what was going on and where I was- they were at home. Namely Mark. I hadn't said a word to him in 3 days. I hadn't said I Love You in 3 Days. I hadn't given any signs of affection- Hug or Kiss in 3 Days. Whats worse, me not talking or me yelling all the time? I still don't know. But he stood by me and waited for something, one thing negative or positive to come out. I'm having trouble with something- I have a question- Life is Beautiful and Life is Wonderful- Hope Is Not Lost- Isn't it?
*-Ashley-*

I'm Back from Carlisle and I'm Tired!

2008-04-25T23:02:00.006-04:00

So we got back to the shop at 9:30 PM exactly 24 hours from when we left! That means we drove 10 Hours give or take, Slept a bit at a Hotel- Ohh it had a pool so I went swimming at about 7:30-8:00 AM. (Sadly, I forgot my swimsuit-But I left them my Phone number and they found it!) Got some breakfast, then left for the show. We walked around the show all day, then we left. That place is huge! You literally could spend days there and still not see everything! It was a really cool experience. Mark found some wheels and we found a couple of knick-knacks. Found a couple of Cars and one Truck in particular, but just not practical. I want it so bad tho. I have the money and everything but like usual Father knows best. Save up for a house. I want the truck now- I want to have fun riding around in the Truck now. But anyway- My Father is amazing. Amazing but Crazy because between church and work he's always gone. Never sleeps for more then a few hours and is basically only home to sleep and shower. INSANE! He's a great example of anything and everything you could ask for in a Man, a Father, a Brother, and a Latter Day Saint. And anything else in between. I am so blessed to have the Father that I have especially in today's world. I just wish I could make him happy and not so sad all the time because I'm sick. I know he loves me and would do anything for me and that drives me crazy that all I do is give him heartache!

*-Ashley-*

Leaving for The Carlisle Car Show!

2008-04-24T09:30:00.003-04:00

Well today's the day! I am really having a hard time getting out of bed... I don't know what to do... I've got to pack, but I can't get out of bed! About a week and a half ago, Dad didn't realize what he said when I asked him if we could go to a car show... He said lets go to Carlisle. (Which is in PA) Honestly- I watch Speed Channel pretty much 24-7 and Powerblock on Saturday and Sunday so I knew exactly what he was talking about. But as awful/wicked/terrible all those words as this sounds- I know how he ticks. So- I kind of played dumb. Well not kind of. I really played dumb. I knew exactly what he was talking about, but I didn't want to be too excited and make a huge deal out of it because he really doesn't have the time to do anything especially go to a car show 5 hours away. So I played it cool and off were going! Mark and I have to meet him at his Shop at 9:30 PM after a Thursday night High Council Meeting, to drive through the night to be there for Friday Morning. By the way... Car rides are absolutely horrible for me no matter 10 minutes or 5 Hours, I have a very hard time. So this will be very interesting!
*-Ashley-*

Kids, Kids and More Kids! I Love it!

2008-04-23T23:52:00.005-04:00

Amy was over today with Amelia so I asked her if it was ok if Amelia stayed while she picked up Ben from school because the little girl across the street named Sophia who's 6, her Aunt died- (She was only 30- not circumstances that anyone could understand mind a child) Sophia was naturally very sad, but excited to play and came over here for a little while. Not too long after that, we saw Anne walking to the bus stop so we waited with her for her kids to get off the bus then walked her whole clan home. After that, Sophia wanted to play over Alex and Ava's so we agreed to see if they wanted to come over here and play. So we knocked on their door and their live-in Nanny Judy answered. She seemed to be a nice lady. They came over a little while later and we played with chalk for a while. Amy returned with Benjamin and he didn't really want to listen or play, he just wanted to show off and climb a tree- I wonder where he gets that from...Next thing we know he'll be shirtless all the time! He wouldn't listen of coarse, but I pulled him off the one where he would get hurt on and helped him up on the bigger, higher one that I used to climb as a kid. He was really scared but had to act tough in front of all the kids who ironically didn't care at all of what he was doing. Alex and Ava left and Sophia wanted to play at home so Amelia and I went with her. We went home for a little while because Amelia wanted to and Bella and Sam where there. I guess Liz had to bring Michael to the hospital because he was real sick-high fever- I am still unclear but anyway Bella, Sam, Amelia and I ended up back at Sophia's jumping on the trampoline for a little while. I haven't done that in years! It was really fun. Sad to see Sophie's face when she would think about her Aunt though. That's a tough thing to deal with. I really like Sophia's family. They're really nice and actually real people. Playing with kids takes a lot out of me, but if it made any sort of difference for Sophia or her family, that's all that matters.
*-Ashley-*

Matt and Jeannie's Anniversary- Man-Do I Love Those Boys!

2008-04-23T22:29:00.006-04:00

I'm not feeling so well today, but tonight is Matt and Jeannie's 9th Anniversary, so I get to watch the boys for them while they go out to dinner! I'm so excited! I wish I could just sleep this off or something, but if it was that easy then I wouldn't be sick! Anyway, I didn't ask Mark to come with me, he just did. He's a good boy, I guess he's just there for moral support or something. Jeannie is amazing! I sure don't know how she has all of the energy, all of the patience to run around after everybody, but she does. And she does an amazing job at it! She has really taught me a lot of little tips and tricks with the kids, just to make things fun instead of get mad or talking about something instead of just having a short fuse and yelling. Not just things like that many other things I can't explain, but she's just got it in her I guess! Mark is the same way. He really is amazing with any age kids. I guess it's just in his nature. Like I mentioned before, I didn't ask him to come, he just came and helped and played when he could've read Four Wheeler the whole time. Anyway, we fed them dinner, had a blast in the bath- Mark was coaching me with that which I was giggling at. Those boys are so silly in the tub! They're little stinkers at times tho... But I guess Boys will be Boys! We got in PJ's and then played and watched a little TV to chill out- It was quite a time! So much fun! I seriously don't know what I would do without those little ones in my life. I'm so blessed. Very Blessed and Very Tired! Jeannie- Your amazing!
*-Ashley-*

I Love Him So Much!

2008-04-21T23:31:00.003-04:00

Just an ordinary Monday today. Still not feeling well. Tomorrow is Matt and Jeannie's anniversary, so I get to watch the Boys while they go out to dinner! That means of coarse playing with them, feeding them dinner, giving them baths and possibly put them to bed! I love those boys-YAY ME! I am really excited! Mark took my truck with him today because it needed to be driven, gassed up, and washed really bad. He said that it would barely start for him and he was surprised that it actually ran because it sat for so long. That's so sad to me. I love my truck. I just have a hard time going anywhere, especially driving myself. Continuing on, He washed it up real nice for me, gassed it up and then wanted to go out. I had a really bad migraine so I called him and asked him if he would be quiet when he came into my house so if I was asleep he wouldn't wake me. So at about 6:00 or 6:30 he came in my room with a surprise for me---- SUPER MARIO! We'd both been looking for seriously a couple years now and he found one from one of his friends! SO EXCITED!!! With this headache I am so light sensitive that I can't play right now- tomorrow I will tho- He's amazing! It doesn't take diamonds or money to make me happy- just the fact that he cares, he remembered, and searched and searched means so much I can't explain his unconditional love! May sound dumb to some but not to me! He's Fantastic! And I Love Him! No Matter What- He's Perfect to Me- My Perfect 10 of a Man! Marvelous! Devoted! Spectacular! Incredible! To make matters even better- He is so Handsome! I don't know why he picked me- but I'm sure lucky he did! I didn't like him like that, we were best friends, but I guess he liked me more then just friends! We've been dating for a few years and it just gets better and better! Ha-Ha-Ha-Ha-Ha, Girls, This Boy is Mine!
*-Ashley-*

The Week Goes So Fast!

2008-04-20T22:35:00.004-04:00

I thought time flies when your having fun- Not time flies when your lying in bed... Anyway, I don't get how the week goes so quick! I swear it'll be Christmas before I blink! The day was a bit better. I was able to get outside and have a baseball pass with Mark for a little while. That was fun. Minus the fact that the only glove I had to play with was a glove that is made for a Tee Ball/Kindergartner! Whatever- I was outside, in the sun and moving around. Later on, I stopped by the Dwyers to drop off a gift for Sue that I've had forever, and Mollie ended up being there. We talked for a little while then I went home. It was so nice to see her. I met a few of her friends and then took off- I was really tired, but it was totally worth it to see her. I really miss her. She's such a great girl. Maybe in time we'll get back to where we were. Great memories tho. It's always nice to catch up with old friends no matter what the circumstances are. Goodnight!
*-Ashley-*

Slept All Day!

2008-04-19T23:39:00.003-04:00

I can't stop sleeping today! I feel so sick and I am so tired, I just can't stop sleeping all day long! The weather is incredible- Sun is shinning brightly- The temperature is perfect! But I can't even move out of bed. I need to eat- I need to drink- I need to walk- I just keep sleeping. Dad came in and woke me up to say Goodnight. Finally, I can get up out of bed with a little bit of help and get some food-even tho I am not hungry at all. I force myself to eat a protein Popsicle and some baby cereal. Chew on some Ice Cubes. Mark really wanted to take me to get a couple new Fishing Poles and stuff and then go behind his house because yesterday was opening day. I just couldn't do it. The kids love it tho. They go to Pattaconk in the state forest or Deer Lake and DEP gives them buckets full of Fish to Stock the Lakes with. They have so much fun, especially Sammie. Ahhhh well maybe tomorrow- Back to bed for now. Goodnight!
*-Ashley-*

I Want to Go to the Zoo too!

2008-04-18T23:34:00.003-04:00

Last night I was up all night long again with The Boo. What is going on? I just had that scan yesterday, can't I catch a break? Well anyway, my Dad bought a 15 passenger Van not too long ago and today he planned to take all of the kids to the Bronx Zoo. He offered to push me in a wheelchair if needs be, but I was just too sick. Anyway, Benjamin 7, Isabella 6, Jacob 5 1/2, Amelia 4 1/2, Samuel 3 1/2, Peter 2 1/2, Aaron 10 Months and Norah 3 1/2 Months- Three Moms: Amy, Jeannie and Elizabeth, One Dad: Cass and My Dad, Loaded up and in Booster Seats, Car Seats, Strollers, Coolers and Snacks. I wanted to go so bad! I can't do car rides that well anyway. There was no room to lay down- actually no room to even move basically! But it would've been so fun! Ohh well. They ended up home at about 7:30 pm so I know I would've had a really fun, but incredibly long miserable day. Way to much for me. They all came in and showed my their toys they got and ran around for a bit, then went home. Just a few minutes before they got home, Sophia this little girl from across the street called because she wanted to play with Amelia. Turns out her Aunt- Her Mother's 30 year old sister committed suicide and she'd just found out. So I went over to see if I could give her a hand with the kids and Mom quickly followed. We ended up coloring with Sophia on the front steps and my Mom talked to her for a little while. I am not sure if or what religion she practices- And if she doesn't know what I know, I really couldn't imagine how she feels not knowing what I know with the Gospel. There isn't any comfort in knowing that you'll never see someone again. And the fact that in most religions suicide is a straight ticket to hell is so sad to me. No forgiveness. That doesn't make any sort of sense to me. I don't know how to help her but I know that I am incredibly blessed to know that I will see these people again. Death is not the end. There is much, much more to come and many memories to make.
*-Ashley-*

Today's the Day... I Really Don't Want to Go...

2008-04-17T22:21:00.007-04:00

Didn't sleep much last night. Sick with "The Boo" as Kevin calls it. Not nerves just something funky going on. Welcome to my life of unexplainable occurrences! My appointment is at 8:30 am at St. Raphaels so I need to make sure Mom is ready bright and early because she is always late. I had to swallow 4 cups of Barium. EWWWW, Yucky! There was this TV screen by me were I was able to see the whole procedure. It was really cool! The Doctors were kind and patient enough to explain everything that they were doing and everything that we were seeing and answering all of my questions. It showed that when I swallow the liquid goes down then refluxes back up each time. It was really weird/neat. The whole group of Doctors and Students that were in the room were really nice, which is always a plus! There was one Doctor in particular named Dr. Meile who seemed stoked to meet me. I guess he's been following my case since Day One, that was really cool. I sort of felt like a celebrity or something! His eyes were all lit up while he was talking to me, and the hand shake he gave me was full of energy, love and support everything you could imagine in meeting someone for the first time after studying them for over 6 years I guess! Great guy! I am so happy that I made the switch to St. Raphaels. I have such a great team that actually cares for me as Ashley, not just a patient or especially pity me as Cancer. It's really nice also to have Brother Greenwood there. I just wish that we could find the answer to the spots they saw on the PET Scan in January. I hate being left with uncertainties, but that's kind of my life/illness. They really tried with this scan by putting me upside down, right side up, face up, face down, tilted left, tilted right, pushed every which way and he was unable to get a clear view of the spot. Dr. Meile compared all my scans and really had no answer to what that could be so I guess I will just have to get a repeat PET soon. Other then that, everything looked unremarkable- I could even see the Staples and tiny dots from surgical material. Pretty cool! Sucks that there's never any answers but that's my life! Some say I am an enigma! Mom and I stopped at Chilli's and got take out on the way home so while we were waiting we went to TJ Maxx and each got like 5 new pairs of shoes for the summer! Exciting! We definitely scored! So we left the house at 7:45 am, and didn't get back until about 5:30 pm. That was a long, hard, emotionally draining day! Sure everyone has them, but I am so very blessed to have the support system I have to be able to talk it out, let it all go, get it out of my system and put it behind me. Thank You immensely to all of my angels!
Love you!
*-Ashley*

So Beautiful Out... But So Sick!

2008-04-16T21:32:00.001-04:00

I was up all night sick last night bad. That's really not fun. So, today I am really tired and happy to be in my own bed as much as I loved that hotel. I don't know what is going on with me still. Tomorrow I have a small bowel series which I know will come out perfect like every other test which is awesome, but that means no answers. Mom decided to go out shopping (surprise, surprise) with Amy and the kids. I guess they're on School April vacation, so the kids were playing here for a while before they went out. Benjamin stayed with me to lighten the load a bit for Mom and Amy. We went outside to shoot the bow and arrow and attempted to wash the car, then we had a baseball pass but that didn't last too long he likes to play in the grass more then catch the ball for some reason. But we had fun! If you don't succeed, try, try again! I am very anxious about tomorrow's test. I HATE THE HOSPITAL! And I HATE having to swallow Barium. Its all in making sure that everything is ok. I just need to clear my head and make sure my subconscious is not full of negativity which is making me sick. Surround myself with the ones I love the most and all will be well.
*-Ashley-*

My First Web Cast!

2008-04-15T21:25:00.002-04:00

Alright so today I really am not feeling well. Huge migraine and I really am not sure what to do! We're supposed to be at the LRG office at 10:3o, the cast starts at noon, not any earlier because we pretty much went over the presentation and the dialog yesterday so that gives me some more time to try and feel better. Well I spent a couple hours in the pool and hot tub last night and I smell ridiculously like chlorine but I have no energy to get out of bed and no time to do anything so I guess no shower! We arrived there a little late due to me feeling like garbage and did some more prep for the cast. When I arrived, I soon found out that poor Jacqui is stuck in the hospital and will not be able to call in and help host at all. She really has done everything she could within the hospital to be a part of this but it's just not going to work today. Man, I hope that she's ok. I haven't formally met her yet, but she seems to be a really cool and nice girl with the same mindset as I have. But she is a lot sicker then I am. Shes started a new drug trial that's prevented her from being able to come to New Jersey and now I am not really sure what's going on completely but she's just in the hospital in she defiantly thought that she wouldn't be. All I can do is continue to include her in my prayers and hope that all goes as planned for her treatment.
I've got a little while to go over what exactly I will be saying- introducing Dr. Lee Hellman and Dr. Alberto Pappo and leaving it up to the will of God and hoping I will be able to say everything correctly as I introduce them. After their presentations I directed some questions towards each particular doctor with a ton of help from Trish and the others at the LRG. It was a great experience and I would love to do it again! We had a very successful Web Cast! Mom went out to lunch with the adults and I went to California Pizza Kitchen with the kids in the office. I was so tired, so we left for home! New Jersey, The Hotel, The Life Raft Group, everything was amazing. I couldn't have imagined a better trip. It still amazes me 5 or 6 years later that The Life Raft Group is still as committed as they were when Norman started it. We're so incredibly blessed by people, such special special people in our lives- Don't take them for granted!
*-Ashley-*

Road Trip to New Jersey

2008-04-14T22:38:00.002-04:00

Didn't sleep last night- I was sick all night more than usual-Of coarse when you have important things to do, that's what happens right? Mom and I had planned on leaving the house at 10:00 so we packed up the car, and off we went at 10:30- not so bad. We had to stop at her Doctors office in New Haven because she had some foot surgery a few weeks ago and one of the incisions looked like it was beginning to be infected. Better safe then sorry right? I guess it looked fine but he put her on antibiotics prophylacticly. My Mother never gets sick! Seriously never. Eight grandchildren, three of which she sees almost everyday- But for some reason it seems when she gets surgery the incisions don't seem to heal without infections. But anyway, we stopped at Daddy's shop to top off the gas tank. No one was at the shop but Laura and Mark- I guess Auntie Deb is still in VT and everyone else was on the road. I said Goodbye to Mark for the night and we were on our way a couple hours passed our goal time but that's ok. Hopefully I will be able to sleep in the car! We went straight to the LRG Office and met up with almost everyone. It was perfect timing so the next day I wouldn't have to go in so early to practice. I got copies of the Presentation and Script onto my computer. Then Mom and I went to this huge mall that I wish I felt well enough to shop I but I didn't, so we ate at the Cheesecake Factory then brought the food back to the hotel. Layed down for a bit. Got some room service, then we we went down to the pool. Mom can't swim because of her foot but I can! I so totally do not want to leave this hotel and especially I want this pool and hot tub for home! Its indoor, not too big- and I would be so healthy if we had one! I love the water! That one was the most perfect setup! I wanted to stay in there forever but Mom's eyes were hurting her because the chlorine was so strong and she wouldn't let me go down to the pool or let me stay at the pool alone, because there were boys working out in the Gym. Oh No, I'm only 22! And I'm only basically married! She's so over protective- but I love her so much! I wish that she could've experienced the pool because it was amazing! Thank You Life Raft Group! Thank You everyone who donates! Amazing, Amazing, Amazing! I can't wait to do the Web cast tomorrow! I guess Jacqui will still be able to call in because she is doing a new drug trial- I hope she'll be ok! I know she is really wanting to be a part of this, but if she can't then I will fill in for her like she filled in for me when I was in the hospital during a teleconference. I just will continue to pray for her and everyone else who is in need. I'm nervous- I'm tired- I'm excited! Goodnight all!

*-Ashley-*

Sunday, Oh Sunday!

2008-04-13T21:54:00.004-04:00

Still not sleeping at night and this pain is really not helping that at all. But I guess it is what it is... I've been craving Denny's Hash Browns for so long, but the closest Denny's is like 10 or 15 minutes away and car rides are not so easy for me, so early this morning I went out to breakfast with Mark- Just to the downtown Coffee Shop in and out in no time at all no questions asked. Just the way I like it! It usually ends up with the waiter freaking out and asking if the food wasn't up to par or something because I only ate a couple of bites then I have to explain how I have no stomach due to a rare cancer and then the pity party comes along with the questions and so on. Needless to say- that's no fun. No Church today. Its really hard for me to sit for that long. This sounds really selfish, so I will preface it with this- I really do appreciate people especially taking time caring about me and praying for me, but I can't stand all of the attention. I get swarmed by people- it's pure insanity! The questions, then I have to give fake answers and smiles, pretend happiness because I really am in horrific pain it just tires me out. I hatepretending to people that I really do love and that care for me so much and take their time to include me in their prayers and I feel I have to. It really bugs me the people who never cared about me before seem to care so much now, that happened in High School. I really didn't think that mature adults would do the same thing, but I guess to each his own right? I get so embarrassed when I have to puke and you know you kinda gotta walk a bit faster then normal in order to make it outside 0r to a restroom, so I power walk it out of the chapel with my hands over my mouth and then of coarse everyone knows whats going on! I've gotten so used to throwing up in public, but its way different when its in the middle of people that know you vs. strangers. Anyway, its a lot easier if Mark comes to church and especially when he drives because it's so tiring for me- we've figured the best way is to sneak in to the chapel a little late and then sneak out a little early so we get to hear the speakers and feel the spirit and leave happily with no questions asked to take away from the beautiful experience we'd just had. Hopefully next Sunday we'll be able to make it! Continuing on with my day- After a quick bite to eat, (Definitely not keeping the Sabbath Day Holy) we went to the beach. Other then the fact that there were a lot of out of towners there which made it a little bit annoying, (I guess it's coming that time of year that the beach isn't sacred to us anymore. Now we have to share! Especially on the weekends... That's no fun.) We walked out onto the sand and the rocks were a bit slippery because it was low tide and Markie was concerned that his shoes were going to get dirty! Ahahahahahaha what a woosey! He's so funny sometimes! Never ever like that about anything but I think he just didn't want to walk all the way out to the end of the pier. Anyway, we of coarse took pictures- Mark said. "See this is why I hate going anywhere with you because you always have to take a million pictures!" Whatever he got over it and we had a wonderful time- I WAS OUT OF BED for a little while- it was great! I love the beach and I am so blessed to be like 2 minutes away from it! My favorite thing in the world to do is at night, bring blankets and pillows to the beach and make a big nest and just snuggle and look at the stars for hours. I could do that forever! Pitch black, no light pollution, only the stars and the moon. I love it in the winter time especially when its snowing- Snuggle up real tight to whomever your with and just listen to the waves, look at the sky, smell the ocean. No matter what is going on in your life, everything goes away! We are so incredibly lucky to have nature in general all around us and its sad that we rarely ever think twice about what are impact is on the world and what God has given us. Our Materialistic possessions can only make us so happy and get us so far in life and when we die they're gone. The experience that I had today going to the beach- The water, the sky, the birds, the whole bit- just nature. I will cherish it forever and be able to take those memories with me when I go to Heaven. I love it! Remember- Your never too old to twirl and dance in the rain, hide under your blankets during a thunder storm, or stick your tongue out to catch snowflakes, build a snowman, have a snowball fight, or run through a sprinkler, slide down a slip and slide or do a cannon ball in a pool and your definitely never too old to jump into a huge pile of leaves! Pure innocent memories are the best and most important ones to be passed on forever and will be remembered forever! Tomorrow I have to get up bright and early because I am leaving for New Jersey to Host a Web cast on Tuesday for The Life Raft Group for Pediatric GIST. That'll be fun! I'm excited! Go outside! Make real memories! Its beautiful!
*-Ashley-*

I Can't Believe It's Saturday Already!

2008-04-12T19:54:00.008-04:00

This week went so fast! Not much to do today. Still not feeling to well, so I'm lounging in bed like usual, watching Power Block and all the other car shows that come on before and after. Dad asked me out to lunch but I really didn't feel well enough to go. I got a call from Jeannie to watch the boys for her, that's quite a no brainer. As much as I don't feel well, I'll make it work. Marks here to help if I need it. She only had a small errand to run, so it wouldn't be a problem. Jacob's foot is feeling much better so he's able to walk on it almost completely. Daniel's down from Vermont so he and Tyler stopped by to say hello. (Daniel is 28 and Tyler is 26) Then, Amy and Cass came over with Benjamin who's 7, Amelia, again who's 4 1/2 and Norah who's the youngest at 3 months. So they'll all play together. My sister Amy(Norah's Mom) asked me to be in the room with her while she gave birth to her.All I was doing the whole time was praying for everything to go as planned and my sister to be ok and the baby to be healthy. I got more than that! What an amazing experience! What a blessing life is! Above all, Holy Cow, my sister is unbelievable! She can do anything! All natural, no epidural- She did it! All I could think of was "I Am Woman Hear Me Roar!" On January 10, 2008 6 Lbs. 7oz., 19" long the little peanut Norah Ashley Burrell was born. Yes, Cass and Amy named her after me! She came out sucking her fingers and smiling and hasn't stopped since! Once again what can I say- Family, Family, Family- The power of Family. From Mom and Dad to the Little Ones. I couldn't ask for anything or anyone more. Well, I never really knew my grandparents- all but one died before I was born and I never spent much time with her so I have a bunch of adopted or foster ones! I know I'm cheesy with that. I try and teach the little kids how lucky they are and to not take advantage of the fact that they have all of theirs. Anyways- I am really tired so Goodnight to all- I Pray that we never let the petty issues of life get in our way especially between Family, and we always remember what's important.
*-Ashley-*

Urg... Still Sick!

2008-04-11T22:30:00.003-04:00

I'm so frustrated with feeling like this! I know I have been cooped up in my bedroom since I got my full gastrectomy which was May 31, 2006 - sadly that's about two years in bed now. Its crazy how time flies and I am 22 and I feel that I haven't accomplished anything. If I think like that then I'll just depress myself. I'm so tired, but I can't go to sleep because I'm in so much pain. I'm just so drained from these migraines and not being able to eat. Just a vicious cycle that will hopefully end soon. At least I'm not in the hospital! I still get horrific bouts of breakthrough pain that are unbearable. Its been a long time of this so I finally gave in and I am going for a Small Bowel Series next week to see if there are any kind of kinks or blockages, inflammation or growths ect. There is typically never a reason for what is going on with me or any of my bizzar aches and pains or cause for any of it. I guess I'm just an enigma!
Nah- I'm just kidding, we're all special in our own ways and it takes different experiences in our lives to truly bring out the person we are inside. Prayers are with you!
*-Ashley-*

Not feeling so well today...

2008-04-10T11:34:00.000-04:00

I have been in so much unexplainable pain for almost a month now between the normal abdominal pain that I usually can deal with brake through meds if it gets real bad- but that's been out of control, combined with the inability to eat. So I try and eat something and get this excruciating pain so I just would rather not eat. That's really not a good thing but it is what it is! I spoke to my Gastroenterologist and he said that the pain when I eat could be intestinal spasms or some sort of blockage, kink or obstruction (hopefully not another tumor), so in the mean time he put me on this medicine called Levbid that is suppose to help intestinal spasms and such. It seems to not do anything, but I continue to take it anyway. I really don't want to go to the hospital even tho I know I should. And I have been so reluctant to calling or going in to see any of my doctors. I'm teeter-tottering, sort of back and forth in my head between how much pain I am in and how much I absolutely despise the hospital- (thats a usual mind game)... I don't know what to do! But not eating is not the answer! I have got to do something to get my mind off this and out of bed! I think I'll make dinner for my Dad. Lets see, I went grocery shopping eairlyer this week so I think I'll make Chicken Florintine! I always wanted to be a chef. My Great Grandmmother was a Pastry Chef and everyone in my family can cook really well. I used to cook dinner and bake all the time especially with my cousin Amanda. As a matter of fact my Dad would yell at me because I would leave the kitchen such a mess almost everyday! That was years ago now. I can't really eat anything that I cook so it's really not that pleasureable anymore. Not a hobby like it used to be- too bad for my family! Lately I've been filled with lots of anxiety due to many things- but the 26th of this month will be the two year anniversary of my pretty much brother Callin Dwyer's passing. I think between me not feeling well and unable to eat and unable to get a hold of his family for some reason, I'm not to sure what to do. His sister Mollie who was my best friend growing up for a very long time and his Mother whom I have always had a very special connection with are frequently appearing in my dreams. I dunno what to do because they live 1/2 mile from me and I can't seem to reach them! Its driving me crazy! With Cal, I guess I can just continue to laugh at the funny memories I have of him and remember all the craziness of growing up together. I still have a hard time thinking about loosing someone you love so dearly and trying so hard to get over it, but people are so incredibly special in our lives and all we can do is love and cherish every moment we have with each other and never forget that every small Hello or I love You because it may be the last. Even passing by someone that we may not know just a friendly smile may change or even make their day! Lots of Love to All!
*-Ashley-*

Beautiful Babies!

2008-04-09T15:10:00.007-04:00

This morning when I woke up I couldn't wait for it to be time to pick-up Amelia from school at 11:30 then shortly after Jeannie would drop off Peter and Aaron because poor Jacob who's 5 1/2 hurt his foot and is on crutches with a little cast sort of thing had to go to the doctor. My Mom had some surgery on her foot, so Jacob and his Grandma had Boo-Boo feet at the same time! Peter loves to play with Amelia so much so they're a breeze! We all played, gave the Hamster Sarah some treats and then made some lunch. Aaron had a fever and wasn't feeling very well, so he wouldn't eat anything-usually will eat everything! So that wasn't good. He played on the roller coaster though- he loved that! We went upstairs to see the Corey the Snake and Moe the Cat and ended up cleaning out Corey's cage. The kids are all so helpful and even though they are so young. Amelia being the oldest at 4 1/2, Peter being 2 1/2 and Aaron being 10 months have such beautiful spirits and I love to watch them and especially play with them! Aaron was really not feeling well, so by that time my sister Amy (Amelia's Mom) had come home and she looked after Amelia and Peter while I took him in my room and gave him a bottle and then he fell asleep. Now to be completely honest, I still am not able to eat much and am in a real lot of pain- so we both fell asleep for a little while until Jeannie (Jacob, Peter and Aaron's Mother) woke us up! I hope you all had a wonderful day and never ever forget the power of Family and pureness of Children! Goodnight All! Everyone is in my prayers.
*-Ashley-*

My First Post!

2008-04-08T00:51:00.002-04:00

Well thanks to my loved ones have been sort of nagging me for quite a while to start a blog, here goes!
Today was a wonderful day. The sun was shinning brightly and I was awakend by the most wonderful thing, Mark! He and a few other guys from work were asked to clean up the yard, so they were here bright and eairly. There is nothing like someone waking you up with a big hug, telling you how beautiful you are and how much they love you. That is deffinetly a great way to start the day! Mark has this wonderful way of just holding me and telling me that eveything is ok and making me feel all better no matter what is going on, everything is ok. The only way I have been able to get through the past few weeks (even tho I should be in the hospital) of horrific pain in my sides and not being able to eat- vomiting like crazy has been because Mark has been helping me. He's amazing! I felt well enough to go out and drive a little bit so I drove with the windows down and I did some shopping downtown at Ciao Bella. It's so much fun to buy beautiful clothes! Hopefully soon I will feel well enough to wear them. I love getting out of PJ's and into Couture!
There's nothing in the world like it! I can't wait for this summer- especially Boating, Fishing and going to Vermont with my Family. Anything with my Family especially when its outside and involves some kind of motor is my kind of fun! Goodnight All! Sweet Dreams and Pray that we all feel well and have a wonderful day tomorrow!
*-Ashley-*