MAXIE, We miss you so very much!

---

***** Maxie we miss you more each day. *****

---

Merry Christmas

We want wish everyone an Merry Christmas and Happy New Year.

As you gather your families together the next few days, take the time to really look at each one. Life is so short! Remember thoses of us that need your support this week. Say a special prayer for the children that have left us and the ones they left behind.

For thoses still fighting, may we say a prayer that the new year will bring health, happiness, miracles and cures.

Please remember to take the time this next week
and sign our all of our "Angels" pages.

Thank You,
Julie, Christy, Chris, Robert
and Angel Maxie Lagourney

PS. This is your momma, I am missing you so much my arms ache with pain this morning not having you to help me cook on Christmas Eve. It feels that every muscle I have aches to hold you and to talk to you. All I want for Christmas is peace in my heart that feels so badly bruised. Please help your brother adjust and watch Shawntae. I love you this much! Hey Maxie....

---

Friday, December 17, 2004 ( Only 8 more days)

Robert got out of school today for the Christmas holidays. Does anyone want him for a few weeks? He is going to be so lonesome. He still wants me to sit and watch him play his games with him. It might snow Monday so that might be fun for a few days.

A few nights ago he dug out a Playstation II game called "Kingdom of Hearts" that we had bought Maxie around this time last year. He wanted it so badly and we did not have the money. Robert put it on and that music came on and I just stopped. I sat and watched the first of the game. It was almost like a boy going to heaven. The music is like angels singing. Tears came into my eyes. When the game came on the boy was fighting darkness or evil. It is a Disney game and so beautiful. Maxie was so good at it and all games.

Robert was playing and then all of a sudden he got stuck. He could not go any further. I looked over and big tears were going down his face. I did not know if he was crying because he was stuck or missing Maxie. I knew if Maxie was here he would have helped him. Robert tried and tried but just could not do it. He finally got mad and stomped upstairs to his room. I just sat right here and cried for him. I cried for me. I just cried because it is all so unfair.

We have made some great friends on Caringbridge. "YOU" have been almost my total support. When I wrote the other day... I was not talking about you! I was talking to the people that live near or know someone in their own town that has a child that is very sick or a family that has a child that passed this year. Do not forget them.... It is so easy to be busy and forget that they are hurting. Cancer does not end when a person dies. It effects the family for a long long time... NO, forever!

Robert's Christmas is going to be fine.... but not my babies. She is hurt, and feeling left out and forgotten. (No gifts) I know it is depression but it is hard for me to watch. I wish I had some angel dust to make her feel better. I would need a lot because I would sprinkle on all the parents that lost a child this past year.

Max... I love you... Grandma

---

Tuesday, December 14, 2004 (JULIE WRITES)

A great friend we made while Maxie was sick, E mailed me this morning and ask about Christy and this is what I wrote her back. After I wrote it, I thought it would make a good post telling how we are:

7:00 AM Monday Dec. 14th

You would not believe what she is doing right this second... She is UP, SHE IS COOKING BACON FOR BREAKFAST, FOR ROBERT, AND SHE HAS BEEN WORKING!  THAT IS GREAT! 

Christy, Robert and I went to Target Sunday to get a baby-doll for a girl at her work that has $0 money for Christmas.  Her 3 year old is getting nothing and does not even have a doll.  She did fine looking at girl things then we went over to the Christmas isle and got our Christmas ball.  We uaually each get one new one every year (we have so many already).  She started crying so hard.  She said just could not do Target without Maxie.  I think she cried hard 3 or 4 times Sunday. Sundays get to me too, the boys should be home and together.

I am dreading Christmas morning and day... fun for Robert and hard for my baby.  I wish Santa would give me my wish and help her loose all that weight. She is so very beautiful!   I worry about her heath all the time.  I worry about everything all the time, LOLOLOL. 

Chris and I picked up Robert's bike from Santa yesterday, after Chris had his MRI.  We looked and looked again at every bike place and store in town. (Christy was home not feeling well.).... It put my bank account at zero... but all bills are paid, I have Dr. Pepper and there is food in the house.  All is better.... holding breath.  Thank you so much for asking... not very many do any more... love you,
Julie

It is so very different from last year, so many cards and gifts. So many people worried and caring about us. I am feeling a little sorry for myself today. Not the gifts... I miss the hugs and support. It is harder on those left behind then most people will every know. If you have a friend or love one that has lost a child this year or even ever I guess... Call them, write them ... hug them and tell them you care how they are doing! CANCER EFFECTS DOES NOT END THE SECOND THE CHILD DIES...

I will get off my soap box... My house is a mess and I have a few cards to send out. I was not going to this year but I guess I will send out a few. My heart is just not into it!

Maxie, thank you for helping your Mom get back to work. Please keep an eye on our Shawntae, she has ZERO white count and she is getting tired of fighting. Give Cheyenne a hug from us. I love you more! I miss you more!
Please check on Shawntae and say hi! Shawntae's Page

Grandma Julie

---

Wednesday, December 8, 2004 (late at night)

It has almost felt like normal around here the last few days! Oh, how can I ever say that with Maxie not here? Christy has worked more the last 2 weeks than since Maxie died at the end of March. She is still only working short shifts but working and that is great! I think the driving back and forth is so hard. All the trips she made to the hospital, up and down that same road are hard to drive alone.

Robert is going crazy with Christmas things he shows us or tells us about. He wants everything he sees on TV. I will be so glad when Christmas is over. Not just the money, and not just the memories of Maxie but just the stress of Christmas. He is doing so poor in school this year. I do not know if it is Maxie's death, the stress of this house, his teacher and room or just the 4th grade! Most likely, all of the above
and just being a spoiled 10 year old.

I wrapped his first package today and put under our little tree. It is driving him nuts. He kept saying just give me a little hint. I said it is in a box about 12" high and 12" wide with red Christmas paper on it. He looked at me so funny and said, "I KNOW THAT!".

How am I? I have had an MSG headache for 4 days. The meds I use to take for my bipolar had stopped them but made me gain so much weight that I changed meds. For a long time I did not have MSG headaches (or did not think I was) but now I have realized that I am getting them again. It is like a monster, as long as you know what your are fighting it is easier. Lupus fibromyaliga is the same way. You try to control it and not let it control you.

Did you read the great news about Shawntae? It really makes you believe in the power of prayer and miracles. Maybe Maxie whispered in Gods ear. I am so glad for Sheila and her family.

Maxie.... you had such trust and faith. I told Chris the other night that you had a golden light around you all your life. It was there the minute I saw you the first time and I will always remember how people old and young were drawn to you. It was an honor to have had you in my life.

Things are better. One step at a time. I wish we could all (Caringbridge friends)could hold on to each other the next few weeks on bad days.
I do feel you, I really do.
Thank you,

Julie

---

Saturday, December 4, 2004 (Julie writes)

Good Morning...

It has been a very good week. Chris has been on vacation, (that was not the good part LOL). Christy worked 2 days so for 4 hours each time! We refinanced our house and I paid bills and bills and bills. That is a great feeling! With Christy not working full time yet, we did not know what else to do. I think it will work out for the best for all of us.

Yesterday Chris, Christy and I went to eat lunch at one of our little local places and then picked Robert up an hour early from school. We stopped at McDonalds for Robert food and off to town we went. Poor baby feel asleep before we went 2 miles. He is so tired all the time! He does not want to go to bed till every one of us is tucked in for the night. It is a battle every night. I told Christy that it is harder to get one to bed than it was two?

We had a good time in town. Finally, when all tired and hungry we went out to eat (again). Two times in one day is a record for us. Stuffed and full we started home. I wanted to stop and get Robert shoes so one more stop. I even found some loafers for me! Christy laughs at me because I buy the same pair of shoes every time. I always think they are different and then when I get home, they look almost like the ones I have! I just love thick white socks and loafers! Put me in a nice big mans shirt, cute jeans, white socks and new loafers and I would go anywhere in the world. I just freak her out!

The Christmas lights were turned on in downtown Richmond last night. All it did is remind me of last year. I did get up this morning and decide to go look and see if we can find a small live tree to put up just for Robert! ***SHOCK***! OK, we can put it up inside for 4 weeks and plant after Christmas for Maxie. Everyone can stop yelling at me now... OK! PLEASE! So I guess that is what we will do today on Chris's last day off of his vacation, go pick out a small, live tree. Christy has to work a few hours again today! I do not know what has made me feel better this week, paying bills or Christy working. I can tell you, it was not having to put up with Chris all week. How do retired people stay married?

Please go read Cheyenne's and Shawntae's pages today.
What special parents they have!

http://www3.caringbridge.org/tx/cheyenne5/index.htm

http://www3.caringbridge.org/va/shawntae/

http://www3.caringbridge.org/tn/connorhunley/

http://www3.caringbridge.org/sc/tylertucker/

MAXIE, I LOVE YOU MORE!

---

Tuesday, November 30, 2004

We cannot ease your aching heart,

nor take your pain away;

but let us stay and take your hand

and walk with you today!



We'll listen when you need to talk;

we'll wipe away your tears.

We'll share your worries when they come;

we'll help you face your fears.


We're here and we will stand by you,

each hill you have to climb;

so take our hand, let's face the world,

live one day at a time.



You're not alone, for we're still here,

we'll go that extra mile;

and when your grief is easier,

we'll help you learn to smile!

(author unknown)

We are still here living one day at a time. Trying hard to make it past Christmas without our Maxie. We should have bought stock in "Puffs" long ago. (Stan had asthma and used a million also.)

Out Robert is our glue. What a big job God has given him. He is busy now making his "wish" list. I keep trying to explain to him why he and Maxie got so much last year and not to expect that ever again but at 9 or 10 that is hard to understand. We make so much out of material things now days!

Please keep in touch with the other "Angels" families.

Maxie, just your name makes my nose tingle and tears come to my eyes. We miss you so much. Kiss your Mom... and tell her to live for Robert! LIFE MUST GO ON, EVEN IF IT HURTS, AND IT DOES HURT.

---

***** H A P P Y * T H A N K S G I V I N G *****

The upcoming holidays are hard on thoses of us that have lost a child. Please go and sign angel pages and pray for the ones they left behind. The next 6 weeks of all of our lives are going to be so very hard. Do any little thing you can do to help them even if it is just a knowing smile or hug. They might not ever tell you they need your help but they do. We all do!

http://www3.caringbridge.org/va/shawntae/

**** http://www3.caringbridge.org/tn/connorhunley/ ****

http://www3.caringbridge.org/tx/cheyenne5/index.htm

HAVE A HAPPY THANKS GIVING,

JULIE, CHRIS, CHRISTY, ROBERT
AND ANGEL MAXIE

---

Saturday, November 20, 2004 ***** Julie writes *****

I KNOW YOU ALL THINK THAT ALL WE DO IS SIT AROUND AND CRY IN OUR BEER (Dr. Pepper) BUT THAT IS NOT REALLY TRUE! I USUALLY WRITE IN HERE WHEN I, AM DOWN.. A LOT I KNOW BUT THAT IS WHEN I NEED TO VENT AND GET IT OUT.

WE DO STILL LIVE AND LAUGH IT IS JUST HARDER. WE ARE SLOWLY MOVING ON BUT ONE DAY AT A TIME. A LOT OF PARENTS THAT HAVE LOST CHILDREN DO NOT VENT THEY JUST HIDE. I HAVE BEEN DOWN THIS ROAD BEFORE SO I KNOW YOU CANNOT DO THAT. I AM TRYING HARD NOT TO LET CHRISTY. IF SHE WAS NOT SINGLE AND LIVING WITH US I KNOW SHE WOULD HAVE. SHE WOULD JUST CLOSE DOWN BUT I KEEP PUSHING. SHE DOES NOT REMEMBER BUT SHE HELPED PUSH ME WHEN STAN DIED.

MY LIFE'S GOAL NOW IS TO HELP GET ROBERT TO A GROWN MAN (AND PUSH CHRISTY OUT OF THE NEST). NOT JUST A MAN BY AGE BUT A GOOD AND HAPPY MAN. IT IS GOING TO BE HARDER JUST BECAUSE OF WHAT LIFE HAS DEALT HIM BUT MAYBE THAT WILL MAKE HIM EVEN BETTER.

DO NOT THINK WE ARE JUST GIVING UP. YOU ARE MY MOM, MY SISTER, MY BEST FRIEND... JUST LISTEN AND PRAY FOR US AND THOSE LIKE US. THERE ARE SO MANY. THERE ARE TOO MANY.

MAXIE, MY LITTLE TURTLE... WE MISS YOU SO VERY MUCH.
GRANDMA JULIE

The upcoming holidays are hard on thoses of us that have lost a child. Please go and sign angel pages and pray for the ones they left behind. The next 6 weeks of all of our lives are going to be so very hard. Do any little thing you can do to help them even if it is just a knowing smile or hug. They might not ever tell you they need your help!

http://www3.caringbridge.org/va/shawntae/

**** http://www3.caringbridge.org/tn/connorhunley/ ****

http://www3.caringbridge.org/tx/cheyenne5/index.htm

---

**** 7 MONTHS & 22 DAYS SINCE OUR MAXIE LEFT US ****

Good morning! Cannot sleep lately. Being manic~bipolar and (mine is rapid cycling), that means you can go up and down in the same day. It is very hard to medicate because of that. Stress makes it worse just like my Lupus.. Gee.. what a mess I am speeding around doing nothing.

I was reading Cheyenne's page and cried. I remember going to Stan's grave every day for months and months. We owned the race car shop then and Stan drove for a lot of guys. The day of the funeral after everyone had finally gone home, Christy, my Mom and I went out to the cemetery to take pictures of the flowers before the Texas heat made them all wilt. I was still in shock and not crying much yet. (That seams so strange now.) While standing there on this beautiful early fall day and the pink sun was just sinking in the West we heard a familiar sound. It was a hot rod just over the hill starting up. Open headers and the sweet sound of a big motor. We all got quite and listened. We all then laughed and said Stan would love that.

Like Roy and Donna we would walk around the cemetery and read the names of those around him. We looked at markers for months and months. Then when I finally decided what to get, I found out how high they were (shock). I think it was 3 years before I finally saved enough to have one put on his grave. What memories of my babies I have, most now are of sickness or funerals. A waste of 2 beautiful lives.

I want to tell Donna and Roy and others to keep very busy. Cry and scream all you want but try hard to keep going. This first year is just so very hard. It is easy to tell others what to do but hard to do ourselves.

Those of you that are friends of us please do not say, "I KNOW JUST HOW YOU FEEL!" No, you do not, unless you have lost a child. Listen to your friend let them tell you the same stories 100 times. Never tell them, "It is time to get over it!" Try to keep them busy. Call and say "I am going to town, will you go with me? I do not want to go alone." Never make it sound like you are dragging them out of the house. If they do not answer the phone or door.. Keep calling every day or so. Go put a basket of cookies on there back door step. Send them some small gift. "NOT FLOWERS." MOST OF ALL JUST BE THERE AND LISTEN AND LISTEN AND LISTEN.

Roy, I wish I could take our pain away. Hold your family tight and breath. I will never understand why them, why us and why so many others.

PLEASE PRAY FOR MY CHRISTY. I DO NOT KNOW WHAT ELSE TO DO TO MAKE HER KEEP LIVING AND TO GET GOING FOR HERSELF AND LITTLE ROBERT. RIGHT NOW I ALMOST FEEL LIKE I HAVE LOST 2 CHILDREN AND MY PRECIOUS MAXIE.

Maxie, I love you more!
Grandma

---

Monday, November 15, 2004 JULIE WRITES TODAY

Normal... What is normal? I think I almost pray more now for just normal than anything. Is that what happy is, when nothing major is wrong in your life? I am so gun shy now I just wait for the next thing to go wrong all the time. I never relax much anymore. If all my family are not in the house and safe.. (or I think safe) I worry every minute. I jump when the phone rings. How strange and stressful life has become in my home, in this world!

Christy is still not feeling well. The doctors office called today and want her to come in for more blood work in a week that her sugars have been high every time. They put her on a diet and told her to walk. The told her to work 4 hours a day every other day for a while, till stronger and until she gets some weight off. She worked Saturday and is going to work Tuesday. She is very weepy... I do not think she is on the right antidepressant yet.

Robert is fine.. New 9 weeks starts tomorrow. He was off of school today for teachers meetings. The pets are fine. Robert dropped MoJo today and cried and cried so hard. He thought he hurt him! He never cries, so it was a good release I think.. Christy and Granddaddy just hugged and hugged them both.

Me.... I have not weighed but think new pill is working great. Only 2 headaches in 2 weeks.. but both were bad ones. I do that a lot when seasons or weather changes. I have been doing our E~Bay to help with money and keeps me busy. We are also trying to refinance our house to play catch up from the last few years. Things are just so high. Gas and food can cause their own panic attacks themselves.

Shwantae and Sheila are homebound so we see her on line a lot and she and Christy talk on the phone also. Christy just saw one of the other girls (4) of Maxie's friends at the grocery today. She had grown up so much and was so beautiful. Christy cried! She cried 3 times in the grocery today! I told her I did not have that with Stan. Dallas was so big you did not run into old friends and if I did now.. they would be fat and bald and Stan would be 22, still young and beautiful in my mind. In this small town she is going to watch all this classmates and Robert grow up and change in to beautiful girls and boys. Time has captured our babies.

Thank you for checking in on us. We both still read the post every day. You are our family.

Grandma Julie

http://www3.caringbridge.org/va/shawntae/

http://gratefulness.org/candles/candles.cfm

http://www.umm.edu/cancer/overview/rhab.html?source=google

---

Thursday, November 11, 2004 CHRISTY WRITES

Hello everyone, its me Christy! I am just sitting here watching TV and thinking about all the stuff I have watched today. There has been so much talk about death on Oprah and now HBO. We don't normally have HBO, but I was flipping and it was just there and they are talking about people losing someone. It is feeling like its haunting me. I have anxiety about going to work. I feel safe here at home and not so much at work. Except for swelling and money I like it better here. I feel so vunerable there but I know its something I need to work on and get through. I know after talking to the therapist that is part of what I have, "Post Tramatic Stress Disorder" from my rape and Maxie's death.

I felt good the other day spending time with Sheila and Shawntae. It made me feel like I was with Maxie, I mean she has the same type of personality as him. Why is it the terminally ill children have such awesome hearts? Shawntae laughs and laughs and has no cares. She just loves her Mom with all her heart. You can see it when she looks at her. Its that bond that you get when your child gets sick. Its not the I need you mom, its that I am glad your my Mom look. I use to embarrass Maxie sometimes with my hot temper, but he gave me that same look like I am so glad your my Mom.

Shawntae has memories of him, they are so good too! Stealing cucumbers from everyone at lunch, holding Ambers purse, and talking about pokemon. Maxie was so worried about Shawntae in the hospital and now I am worried about her. He was so sweet that he wasn't worried that he was sick too. He was worried about just her.

My mom did such a good job with him, and I got to finish it. He has touched my heart and everyone that he knew. I just want to scream I want my baby back! This guy on TV today said his arms ached. That is truly how I feel. I just ache and long for him. I cried watching Shrek 2 the other night because he didn't get to see it. I remember the last time he went to the movies he saw the trailer for it and said he couldn't wait until it came out. It just made me feel numb to watch it without him. I know he would say "Puss in Boots" over and over again, that brings a smile.

Well, Robert's report card wasn't too good, but he moved away from the talker in class today and that might help!, I have a conference Monday so we'll see what happens. Robert has been acting so nice lately. It's very nice.

Please keep visiting Shawntae and let her know your praying for her. www.caringbridge.org/va/shawntae/

Maxie I love you and I feel so empty without you. I can't wait to see your dimpled chin and that silly smile. Hey Maxie!

---

Monday, November 8, 2004 *** PLEASE, PRAY FOR SHAWNTAE, PLEASE ***

http://www3.caringbridge.org/va/shawntae

Up and down, down and up our lives go. Just like all of yours I know but don't you get tired of it? The stress of this year just never stops. This weekend of course we have been so upset about Shawntae. Maxie liked her so very much. Shawntae was in his class in 4th grade and they were good friends. Amber, Shawntae, Sarah and Maxie all ran around together and ate lunch together.

I will never every forget the day Maxie saw her at the clinic. He was so upset! He knows only very very sick kids were at that place. He was very worried about her!
I came home and told Chris and Christy that I had seen the family all in the treatment room looking like "a deer in your headlights". That look we all have when we have just been told our children are so sick. So sick that they might die. So sick that they will be in the hospital a long time and their lives will never be the same.
It has not even hit them yet that what it really does to your life. Your jobs, money, health, marriages, friendships and everything you touch changes. It is like night and day. You wake up in a different world the next day and the only way most get out is death, and you do not want out that way.

Sheila ask Christy Friday, how we handle Maxie's dying and how does it feel?

How does it feel? My first thought was it hurts so bad you cannot describe it. It takes your breath away. You cannot believe it! It is like being scared and hit with a 300 lb. football player all at the same time and then waking up and your life is gone. You cry at the dumbest things. Butterflies, music, movies, smells and rain or snow can bring tears from out of nowhere. I still have a hard time going down the Hot Pocket isle in the grocery store and Chris can hardly cut up a cucumber without crying. Spaghetti and Christy will forever have a hard time and we all love her spaghetti!

How does it feel? I hope Sheila or other parents will never know this feeling!
***** It hurts just to much! *****

Saturday night Christy called from work with her blood pressure sky high again. We went to the ER again, but still they knew nothing. She had gained another 20 lbs in 2 weeks.. Something is wrong! SOMETHING IS WRONG?
THAT IS NOT ALL IN HER HEAD!

Maxie... please... I know you like Shawntae.. but ask God to keep her here with her Mom and Grandma for another 80 years or so, Please. If she must come to see you make it painless and ask them to take there time please...

I love you.
Grandma Julie

---

Thursday, November 4, 2004 BETTER DAY

Maxie's friends link.. Please go check it out and send to others...

http://www3.caringbridge.org/va/shawntae/

The last 2 days have been better!

Christy went to work Wed. for a few hours. It is like starting a new job. So many new faces and a new boss. Going to be hard on her. She thinks she runs everything. I wonder where she got that? LOLOLOL

Robert is riding his scooter right now and shooting me with his "STINK BLASTER" bad smell gun. (Hint.. do not buy one of those for Christmas.) I told him to go shoot it in his Mom's car instead of at me. LOL

I have been E~baying and painting inside my house. We have been doing paper work to refinance our house to get out of all this mess. I hate doing it but we do not plan on staying here very long anyway. I just do not want to live in a tri~level much longer, I am getting to old for all the stairs. I also find it hard to heat and cool. Upstairs is hot, and the den is cold.

I got a new pill for my headaches and guess what? One of the side effects is weight loss! I almost want a headache just to try it. JOKING... you take one an evening. I will let you know how it works.. Then I will charge you $10 to tell you what it is!

I am still having a hard time about Cheyenne. Roy and Cheyenne felt like part of our family. He was so much help and support when Maxie got sick and called a lot the last week or so when Maxie had turned worse. I think there should be a RABDO support group. So very many of those kids (mostly boys under 10) do not make it. I think it helps when you can ask other parents questions and be around if and when you are needed to help support each other. I wish I knew how to do a web page.

Well, guess I will go. Robert hovering over me. Maxie we miss you so very much. I think about or talk about you a 1000 times a day or more. Please come into my dreams and thoughts and help me remember you well and not the last 8 months all the time. I need some happy thoughts. I love you.

Grandma Julie

---

Tuesday, November 2, 2004 * A SAD DAY *

**************************************************
I am having a very sad day. I will never understand why it all hits you so hard on some days and not others! I did get up and dressed to go vote.. but as soon as Chris drove away to go to work... I stated crying.

I fixed myself an egg sandwich and thought of Maxie and Stan both liking them. I looked around and I see their pictures in my house and wonder WHY, oh WHY? I think of my day dreams when I was young and wonder what happen to all of them. Not one dream came true. Did I always do the wrong thing or take the wrong road in life?
I now think so!

I feel so sad today, like a dark cloud over my head. Sad and out of control of my life as it slowly slides down hill. I wake up every day and think ... what will go wrong today? Who will get hurt, sick or die? What money problem will I cry about today? All so self centered I know... I wish I could just turn my mind off for a while.
Oh, God just a while please!

I remember the first year after Stan passed... I do not remember much about it but that I was surrounded by my family and great friends. I went to work 13 days after he passed and cried every day all the way home. I cried almost every day on my days off. I do not think I would have made it without my Mom, and some great girl friends I had at the time. Now.. I hurt just as bad.. as before. I loved Maxie as much or more than Stan. I think because I let myself fall so totally in love with him. I needed him so much at the time and he was so very easy to love.
I now feel so alone. So very very alone!

************

We miss Cheyenne and Connor so much already. I will never understand taking all of these sweet children. If you have not read their page... please do so. PLEASE GO READ THIS:
http://obituaries.sastandardtimes.com/memThanks.cfm?ID=4318

http://www3.caringbridge.org/tx/cheyenne5/index.htm

http://www3.caringbridge.org/tn/connorhunley/

Maxie please show Cheyenne and Connor all the great places and fun things to do in heaven. That is your job now as
"PRESIDENT OF THE CANCER CHILDREN OF CARINGBRIDGE" in heaven.
We miss you so much! I am just so sad today!

Grandma Julie
********************************************************

---

Saturday, October 30, 2004

Have you ever decided if you just sit at the back of the class room and be very small and quite you will not be called on or get into trouble? Well, that is how I felt after the bad post I got the other day. ( I deleted them.) I am just so sensitive right now. When you are this stressed every nerve in your body is already about to explode. That was why I just could not write.

*** Now the birthday boys week!***

What a great week! The day before his birthday (on the 26th) I hung up our very old "HAPPY BIRTHDAY" letters like I always have for years. We picked Robert up early from school and went to Pet Smart to buy the supplies for fixing up the fish tank that Debbie Moore (the very nice friend that gave Maxie "MAGELL THE MOOSE") had given us. When we got to the pet store I headed to see the cats that are up for adoption. (I love cats!) I then walked over to the fish but Christy and Robert were looking at lizards and snakes. I made that mean mouth that I make when I am pissed! Christy then told Robert that Grandma wanted to get him some fish for his birthday! So I then went over to the fish tanks again, but they were still talking about lizards, snakes and Ginnie pigs. I said OK... lets go hold a Ginnie pig. That is how we ended up with "MOJO" in the fish tank.

Every day this week we tried to make it special. We let him open one gift a day that had been sent to us by YOU very special people on Caringbridge. When he went to school Monday, a couple of the kids told him about the party so he then became involved with helping to plan and talk about it all week. When he came home from school every day this week he would be smiling when he got off the bus. He knew that he would have cards and something in the mail! One day he had a stack of cards and letters at least 6'' high. He read everyone. He would then tell me who and where they came from. He got some cash in a few and would then have to count it about 20 times and let me know he had more money that I did. (Little ears know way to much.)

Friday... Party day he woke up smiling. Robert does not smile much, and is very hard to get up for school so that was a special thing. I knew we had a lot to do Friday so when I got up I started cleaning up just a little in case anyone came home from the party with us. I had 6 E~bay items to ship... YEA! I waited and waited for Chris and Christy to get up and moving. Finally Christy and I went to town to pick up the last few things we needed for the party. We had most of everything because of a Caringbridge friend had sent us a party box with things we would need. (THANK YOU) We were going to play some games and needed prizes and more candy for the penyata. Christy had a Disney Store gift card that she still had some money on, so went headed to the mall to pick up something cute. NO DISNEY STORE! It had closed. Now money around here is as tight as a sweaty fat lady trying to get a girdle on. I could see in Christy eyes she was upset. Now what! She said, lets go home! On the way she called a friend who was coming to the party ask them to pick up 2 McDonalds gifts books for prizes.

When we got home she and her Dad stuffed the gift bags for the 25 or so kids that are coming. (I will never understand who started that dumb idea!) We put the usual pencil, cute eraser, some stickers in the bags and best of all... a little stuffed toy we had bought the day before at a Hallmark store for only a $1 each. They were marked $5.99,a great deal! Our next thing was to try and figure out how to get the candy into the penyata. It was made like a tank! How the kids were ever going to break it I will never know. Then Roberts best friend was sick and called and called... he could not come...

We then got Robert showered and me with makeup on... off we went. The girl that was to pick up the cake (as her gift) was late so Christy had to stop and get it. We needed film and ice cream so Chris and I stopped to get that, and ran into Christy... lol. We all rushed down to Mario's resturanut! It was now around 6:30 and it was packed and no parking even! We walked in and saw Shawntee's mom. Shawntee can still not be around people so she could not come. Her mom was getting them some take out to eat. I told her we and taked about Shawntee today, wishing she could come.

We then headed to the party room. It already had about 30 people in it? In a few seconds we figured out they were not with us. They were just there eating and had be sat in the room! Christy got that look again! Tears, big tear came in her eyes! Mario had not noticed that the room was reserved for a party! Our favorite waitress said she was very sorry and she would try to fix it by moving them, but the placed was packed. Finally one long table moved and that only left about 20 other people at the far end eating. We hoped by the time all had eaten and were ready to play the games they would be gone.

Well, things went great! I bought the wrong film... Most parents did not stay.... The adults that did, were good friends and we quietly told them that if they wanted to eat anything but cake and icecream, they had to pay for them selves....LOL The waitress then took their orders sperate. We got 3 or 4 giant pizzas and the drinks. Two kids spilt theirs and I spilt one.. (Bring paper towels next time.) We had everyone blow up their own balloon and the kids and adults hit they around all night.

The other people left just in time.... We then played musical chairs for the prizes. I was starting to feel closed in and hot so I went and sat in the dinning room with some old friends. Christy and Cheryl, her best long time friend in VA, were doing great. I came back just in time to see Robert tied in a chair with the cake on its way. I grabbed my camera and took the picture that is on the page. Some of the men picked him up high and we all sang happy birthday. He was so very happy! It was a great party! No fights, lots of laughs and memories. I kept thinking about Maxie all day and cried just a few tears but really, it was a great day.

When we got home... I signed on the computer, held my breath and checked Cheyenne's page and then my E~bay sales. I then went to bed. Christy and Robert were taking one of the boys home so not here yet. I feel asleep and have no idea what other gifts Robert got are. There is 2 XBOX games sitting here next to my keyboard and a giant Spider Man car in the living room you could not miss. It was a great week.... and great birthday party!

As I have said so many times. THANK YOU SO VERY VERY MUCH. I cannot even think what this year would have been like with out you!

Maxie we missed you so much this week.
Grandma Julie

PS.. Robert acted so nice at the party! We must be doing something right!

---

THANK YOU... FOR EVERYTHING ********

*

---

Tuesday, October 26, 2004 Pissed....

What a weekend... up down, down and up. CHRISTY IS NOT ANY BETTER HEALTY WISE AT ALL. TEST SHOWED MAYBE AN ENLARGED HEART AND MAYBE WATER IN THE SACK AROUND IT! More test tomorrow...

The stress in this house is so thick you cannot breath. Robert's friends were all gone this weekend so he never even went outside. He played with "MOJO" and rode and rode his scooter. We had some party items in the trunk of Christy's car and while she was asleep he went out and got into them. Growing up.....LOL

Chris looked so tired when he went to work Sunday. He has not had a Sunday off now for about 6 weeks. He really looks bad lately. I know the stress is hurting him also.

I wanted to take a ride to see the leaves but it rained most of the weekend so just E~bayed all weekend.

Christy was mentally up and down all weekend. Her feet and body is still so swollen she looks like you could put a pin in here and she would leak. Her feet hurt so very much! I am so worried about her. I am to old and grouchy to raise Robert is something happen to her and we have no other family.

Well, I guess someone answered my question about putting up a jar for donations....LOL It is funny how on Caringbridge when people correct you or yell at you then never leave their name or address. I wish I had time to just go around and correct people. I guess I ask for it. Funny, maybe my Mom wrote that! Sounded kind of like her.

Chris is was off today and I had to pay attention to him. He pouts if I stay on the computer when he is home.

Maxie I love you more... ~~~~~~~~~~~~~~~~~~~~~~~~~~~

Grandma Julie
Tuesday:
You know... we are paying for everything for the kids... but we cannot afford to feed the 30 sets of parents to eat.. I am really sorry I ask. I only write the way I feel... I do not need more stress in my life... like reading post like the 2 have got this week. Hell, now I am crying...

PS: SOME KIDS AT SCHOOL TOLD ROBERT ABOUT THE PARTY.. OH WELL WE TIRED. HE IS HAVING A GREAT TIME GETTING ALL THE BIRTHDAY CARDS... THANK YOU..SO VERY VERY MUCH!

I JUST HOPE NOW THAT CHRISTY IS NOT IN THE HOSPITAL BY THEN. PLEASE PRAY FOR HER THIS WEEK and ALL THE CARINGBRIDGE KIDS THAT ARE NOT DOING WELL.

---

Saturday, October 23, 2004 (Julie writes)

Well, Christy is not any better physically, but mentally a lot better. Friday she called the clinic that our family doctor use to be, but they have to get the test from the heart doctor. They never called back Friday so I guess it will be Monday. Her body is still so full of water. She is taking 2 water pills a day and still look so bad. Her feet, hands and face look like she is 10 months pregnant. I am so worried about her heart something. She has been really watching her diet too.

Robert is getting lots of cards from all over. He was reading every one and looking at ever state. A little girl sent him a scooter. He has been on it all day. My living room and kitchen have 100 doors so you can ride in a big circle around, and around, and around, and around.... lol OH... he loves money. He has told me all day how much money he has in his billfold. If he says $37 plus a Wal~mart card one more time I am going to get on that scooter and run away. You know... he was so lonesome today. All the kids gone and no brother to show your new Gamecube game and scooter.

His party got moved to next Friday night. Most of his best friends were going out of town this weekend to Williamsburg so we moved it. He still does not know...that so fun! Is it proper to put up a donation jar in the in the party room to help cover the cost of all the pizza? We are paying for the kids pizza, drinks and cake.. I guess not.. just going out to eat cost so much! Oh well...

I have cried a few times... this week. The Halloween stuff made me think of Maxie last year.. He was at home and we took him out and he went to a few houses and had so much fun. Friday I ate at OUR chineese restaurant, and I cried. Maxie love all food but love that place. That was one of his last meals he ate that I remember. It is the little things that get you.

I am so upset about the children that left us this week and thoes that are relapsing or getting worse. They are all so precious. I will never under stand, never,never, never!

I have a new pet peeve.... The childhood cancer ribbons.. the gold ones look just like the yellow support our troops ribbons. OK, now... someone needs to change. The troops ribbons should be red white, and blue or the childhood cancer ribbon should be pink and baby blue. ~~~DON'T YOU?~~~ I ordered 2 magnetic ribbons for our cars, and you would have to rear-ended me to read that it is for cancer... Well, I have vented again. Except for being mad at banks and their charges and that would take pages and pages to vent about.

WE WANT TO THANK EVERYONE FOR MAKING ROBERT'S BIRTHDAY SO SPECIAL AND FOR SENDING THE SCHOOL CLOTHES.. YOU ARE MY FAMILY AND I WOULD LOVE TO HUG EVERY ONE OF YOU... BUT WITHOUT FLU SHOTS FORGET THAT THIS YEAR...

***************************************

MAXIE, WISH YOU WERE HERE TO PLAY WITH ROBERT. HE MISSES YOU SO VERY MUCH. I LOVE YOU..

Grandma Julie

---

Thursday, October 21, 2004 (Julie very tired)

Two steps forward, ten steps back.

Last night I was again in the ER, this time for Christy. We were there from midnight till 10 this morning. No sleep, sitting in a hard chair and nothing to eat or drink.

I told you a few weeks ago that Christy's health is slowly going down hill while I sit her so helpless. I can suggest, gripe, yell and even get mad but you cannot make a grown person manage their health unless they want to.

She has gained so much weight! Yes.. sitting in the hospital with Maxie for weeks and months eating junk will do that. Yes.... depression after a death of a love one will do that. Yes.... just not moving, eating the wrong things and living all wrong will do that. Now we need to fix all the damage it has done.

Last night she was so swollen she could hardly walk. Chest felt tight! Blood pressure was up. She was dizzy and seeing spots. She looked very bad. I was worried her kidneys were failing. She was not having any fluids going out and she is on a very strong water pill. They ran test and gave her an injection of the same drug to jump start her kidneys. (She went about a cup in 10 hours. )

The doctor in the ER said he things it is pressure on her heart and maybe sleep apnea. The bad thing is our family doctor has moved so right now we are between doctors we know and trust.

I think it might be the mixture of drugs she is on, the weight gain, wrong foods and laying and sitting to much. I guess it think it is a little of everything. If she was a pet not my grown daughter I would said diet and exercise is the first thing. I would put a collar on her and drag her down the street and back. I would stop all the table scraps and take her off most meds she is on. We need a good doctor. She needs one she can talk to and trust.

Poor little Robert last night! You should have seen his face as we got dressed to go to the ER. What memories that brought back to me, I knew it was him. He ask his Mom if she was coming back!!!!! I told Chris to tell him he could sleep with him after we left. Chris said he jumped in bed in one second and was asleep ASAP all cuddled up under him.

Well, I have vented. I am tired, very tired. Tired of life. Tired of problems. Tired of worry. I want to start writing funny things not this junk...

Maxie it was so hard last night. All the memories, all the bad memories of the last few months of your precious life. I love you.

Grandma Julie

---

Monday, October 18, 2004 Julie vents...

I was ask today by a very special Caringbridge friend what a family needs when they know there child is near the end of this trip. She is so worried about Cheyenne and Conner and their families..

http://www3.caringbridge.org/tn/connorhunley/
http://www3.caringbridge.org/tx/cheyenne5/index.htm

I can only say how I felt. I felt alone, very alone because we did not have much support. I so wish that we had someone staying with us all the time the last week at least. I was home with Robert and I wanted someone with Christy at the hospital. If I went to the hospital I wanted someone with Robert and at my home. I wish someone would have just left us food... I never felt so alone in my life. Without signing on and seeing all the post and E-mails from people on Caringbridge I would have just lost it.

I was so mad after the funeral service. So many people came and all I could think of was where were they the last 8 months. I could count on one hand the people that had came to see him in the hospital. So many people that I had never seen came to the house to eat.... and leave. People kept telling me how much he was loved and so special but I was not hearing that.

The people that were there for us were nurses and 2 very good people that we met that also had sick children. Christy's cousin showed up anytime we ask and just appeared the day of his last surgery when he got the infection that killed him. We were both so glad.. but most you had to call and ask... and you do not want to ask.

I guess the point is... if you are close... just stop by. Take something to eat, mow their yard, take their car to get serviced and washed. Do not let them ask... just say I am here to dust your house or fix your supper. If in the hospital... go now.. even if just to stand in the hall and take the nurses cookies. Do not ask if they need someone there... make sure they have someone with them.

If they have children... take them to eat, to the show or anywhere you are going. Take them to get their parents something special. After... do not forget them. I can only tell you that Robert is so lonesome. If you are friends of a child that has lost his brother of sister... remember them when you go anywhere ... and ask them if they want to go. Keep them busy and thought of.

I know I am preaching ... to the wrong people. You on Caringbridge have been so good to us. Do not forget the family after. Keep in touch... Make a donation in there child's name.. at Christmas, or a birthday or even the death day... let them know they are not forgotten... Please...

I love you guys...
Julie

http://gratefulness.org/candles/candles.cfm
http://www.goldribbons.com/

---

Saturday, October 16, 2004 Julie writes

Christy felt better today. They told her no more Paxil and gave her something new. No more processed food either. Chemicals... I hate them!

Her boss that she has had for years is leaving to another store. She is worried about that. When she is thinking clear.. she can run that store. Change is hard when you are depressed. Change is hard the older you get. I think she is scared but she should not be. She is going back to work on Monday. Good... Robert and I need to get back to some normal schedule. Tired of people being home. LOL

Still trying to keep the party a surprise. It might be his only big party as a kid. Did anyone every tell us a few games to play? Maybe they told Christy. I have been letting her do it.... Trying hard to be a Grandmother... not a Mom. Hard, I want to run everything.

People have been so nice on here. God must have sent Caringbridge to us. I would never have made it without your support and a place to vent. You became my true family.

Well, NASCAR on.. and dryer is buzzing.

Maxie... kiss me in my dreams... please.. I miss you so. I love your eyes and hands in this (BIG) picture of you.

Grandma Julie

---

Thursday, October 14, 2004

NOTHING BETTER! I know it took a long long time to get this low and will take a long time to get up again. Most days the only reason I even open my eyes are for Robert.

Christy is still home.... What am I to do? Tough love, I am to tired to fight. I fight enough with Chris about our lives now.

I want to thank you for your support and advice.

Maxie, oh Maxie I miss you so.
Grandma

---

Monday, October 11, 2004 (Julie writes)

MAXIE IS PRESIDENT OF THE CARINGBRIDGE CANCER KIDS IN HEAVEN.

He just loves that! He meets all the new kids and shows them around after all their relatives get through hugging and kissing them. He told me the cancer kids have a special place at Gods feet and that the angels all spoil them so much.

*********************************************************

I am so worried about Christy. I keep pushing her to get help. She is not hearing me at all. She does not realize how much she has slept since Maxie died. She does not want to go to work and her body is slowly feeling the effects of not moving for over a year now. Her health is slowly going down hill as I watch.

I am not nice enough or healthy enough to raise Robert. Maxie taught her how to be a Mom and she is forgetting it already. The stress is effecting all of us. I know it is me, and I see it also in Robert. Chris is mad and tired all the time!

I thought what happen to Christy when 10 and Stan's death in '86 effected my life so much when it happen. I was wrong! Taking care of my Mom, the boys and Christy's problems about killed me. I have no strength left for this! I used it all up long ago. I do not know what to do. I also want to just climb in bed and sleep. I also want to cry my pain away. God has pointed the way to go many times and I always go the other direction. I am asking him now to show me again. This time grab my hand and lead me! I need his help. I am not strong enough to do this. Please pray for me and my family.

Also, please never think that my boys being mixed ever made me love them less. It is not their fault what life dealt them. I have always just tired to learn from my mistakes I made with Christy and Stan. Mostly it was not showing my love for them that I had deep in my heart. When Maxie was put in my arms, that all change. Love just poured out of me for him till the day we turned off the lung machine. I still love him more than life itself. Maybe just once I listened to God tell me what I had to do.

As for little Robert, he is harder to handle but not harder to love. He use to be so shy and cuddly and now he pushes away. (Christy was and is a lot like that.) I know it is their way of dealing with all that has happen. Robert just fell asleep in my arms in my nice warm bed a while ago. I love him so and worry even more. I always thought Maxie would be around to take care of Robert. I told him a hundred times to always do so. Poor Robert, life has dealt him a bad hand. I worry about his future all the time.

Maxie I love you so...

---

Saturday, October 9, 2004 Julie writes... (again)

I did not think my world could get worse. I know it can, but I guess I thought that I could get my family through all of this. That I could fix it!

Christy is slowly falling apart. She is having panic attacks at work has had to leave and come home a few times. I have also noticed she really does not want to even go to work, (like yesterday). I guess not, if you are going to fall apart when you get there. After she was kidnapped and raped when 10... she also did that. She wanted to be with me all the time. If I was off from work she would always be sick and not go to school. I knew it was because I was off. She says that I am the only person she knows that really understands her pain.

Robert's stress is showing up at school. He brings home papers that are 100 one day and 50 the next. He has a man teacher this year. He has always done better with love, lots of love. The harder you push him ... the more he rebels. If you spoil him he wants more ... and tries harder. I do not think he is being spoiled in his class this year at all. My counselor said he is reading off his Mom, true I am sure. He wants us all home and in bed before he goes to sleep. His world has been torn apart too. SECURITY!

Me... I cry, soft little tears at the drop of a hat. Any little thing will set me off. I am the manager of our little family and without Christy helping much and credit cards at their limit, from the last year I am so stressed out! I find myself skipping pills because I know I cannot afford to refill them. I skip meals and just live off Dr. Pepper, tuna fish and popcorn. I call and tell Chris what card he can use for gas or lunch after checking to see if the payment I just made has hit yet. Am trying to decide if I want cable or AOL. I tried to turn cell phones off but it cost more in penalties to do that. I cancel doctor and dental appointments. I turn of lights and sit in the dark with only my computer and Pogo to keep me company. I either sleep most of the day or putter around doing nothing. I mowed 2 neighbors yards this week... just because it kept me busy and not thinking. I bet they were surprised when they got home. NO LEAVES.....

Well, this is why I have not written. I do have some good news.

MAXIE IS PRESIDENT OF THE CARINGBRIDGE CANCER KIDS IN HEAVEN.

He just loves that! He meets all the new kids and shows them around after all their relatives get through hugging and kissing them. He told me the cancer kids have a special place at Gods feet and that the angels all spoil them so much. He loves his Great Grandparents and even sits on the lap of his Great Great Grandfather while he tells him stories about the wild west. He thinks it is neat that his Great Great Grandmother is so good at marbles, pick-up sticks and jacks. My Dad and Stan taught him how to drive, and the food... oh the food!

Well, my cat is trying to get to the bird feeder outside my kitchen window. I better go. I am here... just not writing...

Please pray for Chyenne and Conner... and their families.

---

Wednesday, October 6, 2004

I am sorry we have not been posting lately but it has been a very stressful month.

Please put our family on your prayer list. Thank you for your love and support.

Julie

---

Friday, October 1, 2004 (Julie writes)

What a month! I have cried over every little thing. Eat and cry, cry and eat. I bet I have gained back all the weight I lost right after Maxie died.

A few have asked us about Robert's party. Robert has never had a real birthday party. Maxie did and now I am so glad. Last October we were to involved with Maxie and in and out of the hospital to plan a party for Robert's birthday. We decided to try, (try) and surprise him this year. His birthday is October 26. He will be 10 years old. We are going to take him out to eat on Saturday, October 23 at Mario's, a great local place to eat. Their son had cancer, (now in remission) and they were so nice to us with Maxie. Anyway, we are all going to go out to eat, just like it was a normal thing and walk in, and over to the dinning room and surprise him. (Maybe!)

If anyone has any fun ideas about games or things, E-mail CHRISTY please. I am really not up to snuff with party stuff anymore. Pizza, cake and ice cream is about all I can think of (food). My mind must have washed out with my tears.

Now for Christmas, we have all talked and decided none of us want to do Christmas this year. Even Robert thinks it is a good idea for Santa to try to send us on a trip somewhere, anywhere this year. Any thing but thinking about last year all day, Christmas Day. If we can come up with the money and time off... Robert wants to go to Disneyworld. We had been told that "Make a Wish" was sending us to Disney for so long, that Robert still wants to go very badly. If not enough time off or money, maybe a long weekend in New York. If I had my way, we would get in the van and drive to TEXAS… I am so very homesick. But that does not sound very fun for Robert.

Well, I am very tired. Still not feeling well lately. Homework to do, toys to pick up and hair still to wash before bed. Boys!

Maxie, I miss you so much. Great Grandmothers best friend just died yesterday. Her name is Lucy… Give her a big hug for me. (I bet she and Great GrandGrandma are even telling God what to do now!)

Love you,
Grandma Julie

---

Sunday, September 26, 2004

Hello everyone, it's me Christy! I usually don't write, I just can't think of anything funny, but things aren't always funny huh?

I have had the worst week with customers! We are trying to get no complaints, but this weekend I have had some screw balls. Whoa! My old ways came out on one I just couldn't tolerate his rudeness. He even told me not to get sassy with him. I told him don't tell me what to do! (Creep!) Anyway my Auto Zone Family keeps me on an even level of stress free living at work. I am so glad to have them. To all of my friends at the Zone thanks!

Then when I drive home I think I need to go up to the hospital and take some craft stuff and a book I need to return to the clinic. I then get butterflies because I am still angry with the Doctors who never gave us a true reality that he might not live. They should always be up front! I could have spent time with him in a totally different way. On second thought no, I loved the last 8 months of bonding, but I would have gave everyone else some bonding time.

The nurse in the clinic and social worker and NP's use to tell me to be his Mom more and not his buddy, but if you knew how wise Maxie was and how easily it was to be his buddy you would understand. He was so magical! I know all people think that their children are but my was (ha ha). He had no fear of strangers or situations. He just charged ahead and had no worries. He was also such a "ham." I wish all of you had to the chance just to spend one hour with him and you would know what I know. He was a true gift from God. He brought my Mom happiness and my Dad love that he forgot he could give. He even gave my Grandma love and joy. She would smile and talk to him. The first great Grandchild made her happy.

I still remember when my Mom called and asked how we were, after he was born. I said, "Good, and I want to bring him home!" She said, "Christy, I am not going to love him!" Then she and Dad drove to Dallas. When they came into my room, I handed him to her and she welled up with big tears. He was so beautiful, and there was that instant connection that they had. I had that with Robert! I was more aware of being a parent when he came. The bond that Robert and Maxie had was just like any real close brother relationship. Robert thought that Maxie was the smartest and coolest kid ever born. There is a video we have with Maxie and Robert Easter egg hunting. Robert kept calling Maxie to come get all the eggs. He wanted him to have the eggs instead of himself.

The connection that Maxie made with people at the hospital was so awesome. The obvious crush on Angela, (who I feel like is family to me), Michelle, Cabble, and of course Barbara. Maxie loved Heather and Robin so much. And the transportation girl and even the MRI nurse who was a sweetie when he was high on meds and had her running for juice. He was on his head singing and laughing like a drunk guy. It still puts a smile on my face. All of the people in my chat room on pogo who kept me positive I thank you all.

On Maxie's last night at home we were trying to find a parking place. I told Maxie I would leave him at the door by the security desk and I would park the car. He said, "No, I will walk., I'll be OK." I know he was in pain and I said are you sure he said yes. When we got out of the car and I was packed all up for a long stay, he looked over at me and said let me carry something. I said no, he said, "Then you could get sick and then who would take care of me?" I smiled and said I was fine. So he grabbed the pillow and smiled and took my purse too. He just giggled and charged up the long ramp, smiling and keeping his head up and charged on. He was burning up and aching. I felt bad that he was scared to be left. He just didn't want me to have to carry all the stuff by myself.

I could go on and on about sweet things he did but I am sleepy and babbling. I love all of you and thank all of you for your support.

Maxie, I love you and I wish you could be here for Robert's surprise party! Hey, Maxie!, send Amber a kiss in her sleep. I am sure she misses you like all of us do. You will always be her first love.

---

Fall 2004 ***** LIFE GOES ON ******

FOR THE COMPLETE STORY OF OF THIS PAST YEAR, PLEASE GO READ OUR JOURNAL. IT IS A ROAD I WOULD NEVER WISH ON ANY FAMILY.

ADOPT A CHILD, SIBLING OR EVEN A FAMILY ON CARINGBRIDGE THAT NEEDS YOUR SUPPORT. IT MEANS SO MUCH! WE COULD NOT HAVE MADE IT WITH OUT THOSES THAT HELPED US. (AND STILL DO!) THANK YOU...

MAXIE, WE LOVE YOU AND MISS YOU SO MUCH.

---

CHILDHOOD CANCER CLUB?

What a club our family is in! The children and familys who have delt with "CHILDHOOD CANCER" club.

I am 56 years old and had never been directly touch by cancer till last July. I knew it was out there like other bad things around us. It was like playing tag when your were a kid. You know "it" will get you sooner or later but you still play the game.

The other members of this club are the only good thing about it. We have met the nicest people in our lifes this past year. Most were strangers a year ago and now some have become my best friends. The nurses are the first team you get to know. A few you become to love so much you wish you could just hug so tight they would pop!

Then comes the other families with cancer. They are the only ones that know how you really feel. They walk along beside you and help guide you along. You see, you are lost and numb. They are like angels sent to hold you hand on this rocky trip. They know how bad you hurt. They really know....

Some people in this club have great support groups. Family, co-workers, churches, web sites (like Caringbridge) and even towns rally around you. The only bad thing about that is how fast they disappear "after". You are still in the club! You are still paying dews! You are still lost and numb, broke and bent! Maybe even more so because the reason to play the game is gone.

Now the game is more like pinball with a dark whole at the end. They tell you this is just the stages of grief. That those of us that are left behind must go through this. Up and down, back and forth, but all along you are being hit. All along you know you must accept the outcome of the game. The lucky members have their friends, family and faith to keep them from rolling down hill.

We do not like this club much! We were drafted! We did not join! We want out, but there is no way out. You are locked in. The only good thing is the people in this jail you are with...

You............, yes, YOU, are the only good thing! We would have never been able to make it this far without you. Please keep in touch. Please.

Maxie I love you, forever.
Grandma Julie, Christy, Robert and Chris...

---

Saturday, September 18, 2004

I keep in touch with Roy, Cheyenne's Dad.

http://www3.caringbridge.org/tx/cheyenne5/index.htm

Not as often now, because I know he is very very busy. In her journal today, was this little line that caugh my eye. He wrote this:


" This tumor is known to grow at many times its normal rate after it recurs following radiation. "

I then wrote him this short email note.

"WHY DO THEY DO RADIATION IT THEY KNOW THIS HAPPENS?   I WAS THE ONE THEY TOLD THE SIDE EFFECTS OF RADIATION TOO, AND I DO NOT REMEMBER THEM TELLING ME THIS.   I KNOW THIS IS WHAT HAPPEN TO MAXIE....  DAMM.

You know our HEART IS WITH YOU... THIS IS SUCH A TOUGH ROAD GOD GAVE US.  

Julie "

He then wrote me this back.... very very interesting I think...

Hi Julie,
 
"Yea, I don't remember them telling us that before radiation either.  It is something we learned later on the support groups.  Excuse my french, but yes, this really sucks don't it!!
 
Always in our thoughts and prayers.
 
Roy"

I have always said the radiation made Maxie so much worse. I told the doctor in layman's terms, " I think it made the tumor mad or infected or something" Why or why do they even use this on kids that are terminal? I hate this stage of grief. The mad as hell, what if stage!

Maxie I love you this much ****************************
Grandma Julie, Christy, Robert and Chris too...

Roy, our prayers are so with you... I do not think any child or any parent should have to go through this!

---

Wednesday, September 15, 2004 (Julie writes)

Morning.... How are all of you? We are getting ready for more rain from more hurricanes. I do not know how the trees are standing up the ground is so very wet in Virginia.

I have not been feeling well. My Lupus is trying hard to flare! "FLARE", now that is a dumb word. I hate telling someone my Lupus is flaring. I sounds like a fire. I know we are into butterflies but on my face is not a good thing. Sleeping all day is great, but not because you are hurting or so tired you just do not care. Oh, well, I have had this since I was in my twenties so might as well stop griping now about it.

Christy had a bad day yesterday. She was very down and worried about Robert. He is so mad all the time! He is so insecure and if not playing with the boys on our street he wants to stick to us like glue. He worries all the time if we are going to be home when school is out and what time Christy will be home from work. The rage and his temper is the worse part.

Christy called the school and talked to the counselor. He gave her some advice and said he was going down to talk to Robert's teacher and he would call her back. In just a few minutes he called and said that Robert was the BEST student in the glass and the most well adjusted. The teacher said he wish all his students were just like Robert. So it is just at home with us this stuff is going on. (GUILT) Christy and the counselor talked more and she called her boss and said she must be at home more when he gets out of school! That was fine with him, he totally understands.

As I put Robert to bed last night, I went in and gave him his nightly hug and tucked him in. He told me he was the smartest kid in class, and smiled real big! I told him how lucky he was being so smart and so cute too. Right to sleep he went, in his own bed.

I cannot imaging how he feels about the last few years of his life. Moving and changing schools, earthquake, tornado, hurricanes and floods, watching 911, the war and then on top of that learning you can die from something when so young. I cannot imaging loosing my brother at 9, my best friend, and becoming an only child instead of the baby. I think he is doing great!

Be sure a keep an eye on our girl Cheyenne. Her father "Roy" as been such a great friend and support to so many on Caringbridge. Now is the time he will need our prayers and support. Her link: http://www3.caringbridge.org/tx/cheyenne5/index.htm

Maxie I love you so much and miss your even more. It is so hard. I am really trying but it hurts so much. How did I do this before?

Grandma
Julie


ADVICE OF TODAY: When sending a card to any child for anything, Please, put at least a dollar in it. They just love getting money! Their own money!

---

Monday, September 13, 2004

---

Saturday, September 11, 2004 Julie writes...

911.... ONLY 3 YEARS AGO!

Where were you that time... ?

My life revolves around my thoughts of Maxie, so when I got up this morning my first thought was.. That was only 3 years ago, Maxie was alive and well! We still had the country store. We had just sold our house and sunk all our life's savings and our parents into the store. There was a drought here in Virginia, instead of floods. I had never been through a tornado or earthquake in my life and now I have!

Chris and I were like a million other people, drinking our morning coffee and watching the morning news. The boys had just left for school and Christy was already at work. Then the first plane hit... Chris said it was terrorist! Me, I started telling him that a plane had hit the Empire State Building once. Then the second plane hit.. I got that sick feeling in the pit of my stomach... We sat there just watching and not talking or moving. Then I said "The building is leaning...isn't it?"

I called Christy at work and told her. I got in the car to drive to our store. It was so strange, no cars on the road, no planes in the sky, just a beautiful fall day but on hold!

Only 3 years ago and how our life has changed 180*. My house I loved was sold, all the money that took 2 lifetimes to save gone, store closed and sold, and then buying the haunted house from hell, I hate! About the time you think, "We can live through this, we made it through a lot worse with Christy and Stan". Then Maxie....!

Was 911 just 3 years ago? How my life has changed! How all our lives have changed!

What were you doing that day?

Maxie... keep an eye on our girl CHEYENNE...
I love you more and miss you...
Grandma Julie

---

Thursday, September 9, 2004 Julie writes...

I am writing this today in memory of Maxie’s uncle and Christy’s brother. So many of you have ask me... (Buy the book, someday and make me rich!).

STANLEY (STAN) CHRISTOPHER LAGOURNEY, III
Born May 27, 1964
Died Sept. 9, 1986 (22)

It was a very normal early fall day in Dallas, Texas. I can remember almost every minute, every sound, every word that day. Stan had an interview in Arlington at an Albertson’s for a manager trainee job. I worked at Albertsons and he and his Dad were always fighting at our race car shop in Dallas. Stan was all dressed an beautiful as he went out the door. “Bye Mom, I will call you later.” That was the last time I ever saw my baby alive. He called later and said he was hired and was very excited. I was closing manager at Albertsons in Duncanville that day so off to work I went, very happy and proud. I knew he was just exactly what kind of person Albertsons wanted as a manager and he would move up fast.

Chris called me a little after 7, I think, as he was leaving our shop after he closed up. He wanted to know if I wanted anything to eat on the way home. He was going to bring me Texas BBQ… yea! Not long after, Stan called and ask if I wanted anything to eat on his way home from the shop. I told him, No…. (Oh why did I not say yes?), I said you Dad is bringing Christy and I something from Colters BBQ.

At around 10 PM that night, as I was counting the 14 or more tills of the day, I looked up at the west end door and Chris was walking across the store. Something about the way he looked or walked was strange. I knew something was wrong, very wrong. I took the tills and money and turned around and put into the safe and closed the door. Why, I do not know? I walked out of the office toward him. It now seams like a movie in slow motion. He put his arms out. He said, “You have to go! It is bad! It is Stan! He is dead!”

I can still hear myself screaming! Those screams you hear when people you love die. The screams that I screamed again outside the hospital after I was told Maxie had cancer. The same way I felt the night Christy was kidnapped and raped! I sat down on the cold hard floor of the store. The night stockers thought I was being robbed and came running and grabbed Chris. I kept saying, “NO, NO… he is my husband, Stan is dead.” Then shock or something took over. I got up, and told the head stocker I had to call another manager in to close the store and that I had to leave. I called Robert, my boss and ask him if his wife would go to my house and stay with Christy. Chris and I walked out the door to the car. I did not get my purse or anything. I had already put the money up and locked the safe!

The drive to downtown Dallas where our race car shop was took forever. I was crying and telling Chris to hurry. I would then tell him to slow down. I was asking questions. HOW?, WHO?, HOW DO YOU KNOW?, HOW IS CHRISTY? ARE YOU SURE HE IS DEAD? WHY, OH WHY……. I did not want anything touching me. I think I would have taken all my clothes off if I could had. I throw my wedding ring out the car window! Do not ask why…

When we got to our shop there were cop cars every where. Stan’s friends were there. There was this girl I did not like… kind of a not very nice girl there. I got out of the car and tried to go in the shop. A cop stopped me, saying you do not want to see him that way! You do not want to remember him that way! I then went after the girl. “Why are you here? What did you do?” "Why in the hell did you call and tell Christy that Stan and blown his face off!" I wanted to hit her. I should have hit her! I wanted to hit anyone. The cops grabbed me and put me in a car so I could call Christy at home and see if she was OK and that Marty, my bosses wife was with her. She was, and Jerry another friend of hers that lived across the street was there also. I told her to call my brother and for him to call our Mom and Dad. I think my Mom called Chris's Mom and Dad for the second time with such bad news.. poor Mom..

My mind now kind of blocks the bad parts out. I remember just flashes the rest of that night. The cops asking me questions like “Was he happy”, “Would he have a reason to do this”, “Was he depressed?” It is frozen in my mind Chris standing in the parking lot, trying to go in the shop and everyone stopping him. The flashing lights of the police cars. Stan’s friends with the shocked look on their faces. The black coroner’s car and maybe just a flash of a black bag being put in the back of it! I know now the cops and friends had blocked me so I could not see. The police telling us they could tell us of a company that would "clean" up the shop! Someone saying you cannot drive, so I think Sam, one of his friends drove us home. Stan's car.. (the one I finally sold last Saturday), sitting alone, all alone in the parking lot as we all drove away!

The story of the next few weeks goes on forever and right now I cannot write anymore today… Was it suicide? Was it murder? I will say this… He and his friends were at the shop “HUFFING” NOS gas, Nitrous Oxide, laughing gas… the same you get when you go to dentist. We sold it for the race cars. He was right handed and had been shot behind the left ear with a big 32 magnum chrome gun. The right side of his beautiful face was gone. He had wanted to be a model or and actor. He was very smart and had many friends, old and young, rich and poor, black brown and white. He was funny and beautiful inside and out. Maxie remindeds me of Stan. So much like him in brains, looks and actions..

Today I cry for both of them. Today I cry for Christy who lost a brother she was so very close too. I cry for Chris that loved them both so much. I cry for little Robert who will never get to know Stan and lost his brother he loved so much. I cry for me… I hurt so much and have so many questions in my life. Most will never be answered and it is hard to live with. Why them and why me...

Julie

---

Wednesday, September 8, 2004 MAD AS HELL!

If you were told you had a cancer... a rare kind.. in a rare place.. and that you will die.. no matter what... What would you do....?

I would say... make me as comfortable as possible... give me a charge card for trips and fun things... and let me be with my family at home, not in a cold hospital (till almost the end) no test.. I do not want to know... QUALITY OF LIFE... laugh and be as happy as I can.. making memories.

I think we should have been told this, last July and given a choice. I never had the feeling it was up to us. I remember the surgeon saying he thought he could get it... Why oh why did they not let him try...? He died anyway....! I think someday, the radiation we used on Maxie, will be seen as torture like blood letting 100's of years ago.

They told me to stop reading on the Internet about his cancer. I wish now I had read every book, every web page, emailed every hospital and doctor to ask questions... Seen every X-ray, and cat scan in person, myself. I think your family doctor should be more involved like a coach on your team. I know that in life you want to do a lot of things over... I never want to live this life again and let my decisions effect so many so badly.

Maxie I am so sorry! I love you so much.. and miss you more. It just hurts so bad... Love Grandma


Check out these sites... PLEASE!

http://www.squirreltales.com/index.html


http://www3.caringbridge.org/tn/connorhunley/

http://www3.caringbridge.org/sc/tylertucker/

http://www3.caringbridge.org/tx/cheyenne5/index.htm

---

Monday, September 6, 2004

AND ALWAYS REMEMBER:

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

-George Carlin

Check out these sites... PLEASE!
http://www.squirreltales.com/index.html


http://www3.caringbridge.org/tn/connorhunley/

http://www3.caringbridge.org/sc/tylertucker/

http://www3.caringbridge.org/tx/cheyenne5/index.htm

---

Saturday, September 4, 2004 (JULIE WRITES..STILL)

Morning... My gums are little better.... (little). The stitches are driving me nuts but they will come out Tuesday. Am eating soft food for now so no Fritos! AND NO... THE FLOODS WERE DOWN IN RICHMOND MOSTLY, SO WE ARE FINE, NO DAMAGE...

Robert has had an OK first week of 4th grade. Very tired but that was expected. He has slept in his own bed all but one night. Still having a hard time going to sleep without Maxie. Wants everyone in the house at home and in bed. One day he came home and said he liked the 4th grade. The next he hated it and all the homework. His writing slows him down, not his brain. One teacher said most boys are like that. They no longer teach penmanship like they use to. That is a loss! As for the school supplies... I am still going though the giant bag of things that was donated this week. He will not need supplies for years! He grabbed the lunch box first thing and used it Friday. Thank you so very much!

Funny, the guy that bought Stan's car that I drove and hauled around forever, is coming to pick it up this Sunday, the 5th. Stan died on the 9th of Sept. 1986. What a week for me to see it leave. My grief this year is a mess. I think of Stan and cry for Maxie. Then I feel guilty that I am not crying for Stan. They were so very much alike. I sometime had the thought Stan's sole was in Maxie. Maybe so he could try life again. If that was so, why would God take him away again at just 10 short years? All I can hope and pray for now, is that there is a heaven and they are together. I wish my faith was stronger.

Christy had a rough week, at work, physically, & relationship wise. She is so fragile right now I just want to go hit people that hurt her. She and I both did not sleep good last night. She would stop and look at me and I would look at her as we wondered around the house all night. At about 4 AM I was crying very quietly and she came in my room and pet Patches my cat that sleeps on my feet and ask if I was crying. Tears come so easily. (Like now!!!!)

I play Pogo games on line a lot. I was trying to play Canasta and had forgotton how. I ask Chris to sit and help me and soon Christy was playing and then Chris was playing. I will never get my computer back! Robert looks up toys he wants to buy, Chris houses and motorcycles and Christy Pogo... I need 2 phone lines, soon!

My Suggestion this week: I have started paying bills on line. (At 56, new ways and change are hard, you know!) Without the paper bills I was afraid I would forget so I use my AOL calendar to send me a reminder. (I do not like the automatic pay thing... I want to be in control.) The calendar and reminders were good but not good enough for me. I had saved on my FAVORITE PLACES their links so I could just go, sign in and pay. There they were all lined up. I then put them in order, of when they are dew. That was still not enough! I then edited the names: EXAMPLE (SUNCOM PHONE- Dew the 1st). I love it! I can just edit easily if the date changes and they are all right there for me to see and pay...

Well, have a nice and safe weekend. Hope Frances does not hurt you and I hope it does not come to Virginia.

Maxie and Stan... I love you so.
Chris, Christy and Robert... I love you too..
Grandma and Mom...

---

Wednesday, September 1, 2004

NOT WRITTING .... HAD 3 TEETH PULLED (FINALLY)...

PLEASE SEND A CARD TO TYLER...

http://www.makeachildsmile.org/featured_kids.shtml




MAXIE WE MISS YOU SO... STAN TAKE CARE OF OUR BABY... I MISS YOU TOO... FOREVER!

---

Monday, August 30, 2004 School Starts Today!

FIRST DAY OF SCHOOL, 2004!

Has it been a year already? Time is rushing by. Robert is already awake and cuddling in bed with his Mom and Missy. Chris just left for work and he is so tired. He hates early shifts! Our whole family are night people.

I had a very very bad day yesterday. Almost the worse I had since Maxie died. If I had called my shrink I would have been put in the hospital yesterday. Christy is off today, I wonder if she did that on purpose to get Robert off to school or baby-sit me today. It is so strange that when I think of Maxie now it physically hurts. Like someone hit me in the chest and takes my breath away. Then my nose burns and eyes fill up with water. My lips get tight and I try to choke back tears that just come anyway. If I let go... I scream at God and cry so hard I get sick. If I hold them in I shut down and sleep. I do not answer the door and use my other screen name so people will not talk to me. I just shut down....

Now some happy thoughts... to start today. We had 2 pair of pants for Robert to wear to school last week. He will not wear shorts to school. ( I think because he is so thin!) Then Friday we got a package from Penny's with NEW pants and sweater. Then Saturday we got a package from the Gap with more new pants and shirts. Robert smiled so big and said it was just like last Christmas. He was having a hard time deciding what to wear today to school. Then, yesterday I opened and read this journal, like I do every day a few times, and some "angels" got more school supplies. I was so glad because Robert always needs more. I can keep these at home for later in the year and for when he leaves his at school and we needed for home work!

I will never in my life be able to THANK YOU enough for the help and support this past year. It is like having arms around you that you cannot see but you can feel. Just when we needed them the most. Kind of like the poem "FOOTPRINTS". I love that poem! I had it read at Stan's funeral we had it read at Maxie's also.

THANK YOU, THANK YOU, THANK YOU.

I have another wish today. I met a child and his Mom on Caringbridge that needs our help. Tyler has the same kind of cancer that Maxie had so we connected. He is supposed to be in remission but if this is what that call remission, I do not think I want it. She wrote to Chemo Angels to sign Tyler up but they do not take children in remission. The also need more volunteers... Do you think we could send Tyler some cards and things, plus our prayers. Put him in your Favorite places and check on him often. Write and sign his journal and tell other to do so also. I really think his Mom needs us right now. Here is his link: CaringBridge.org - tylertucker (http://www3.caringbridge.org/sc/tylertucker/)

Maxie, watch over Robert today at school. I love you...
Grandma Julie

---

Friday, August 27, 2004 Julie writes.. again... or still!

WHAT A GOOD..... BAD DAY.. I JUST HAD!

Payday.... Good Paying Bills... Bad! Robert in a great mood.... Good, Me missing Maxie... Bad! Remowed yard.... Good... Chris mowed yesterday.... Bad! Chris and Christy working 11 hours.... Good (pay)... Them being tired, grouchy and no help......Bad! Got most school supplies.... Good. Teacher wanted 4 packs of colored index cards... Bad and stupid! (Where do they come up with this junk?) Robert took a bath.... Good... I took a long shower... Great! Now for the very bad part of my day!:

Robert and I decided to drive to town to get school supplies we needed and eat at Burger King.. (It is a 45 min. drive to town.) It was such a beautiful lazy day I decided to take a back road.... BAD IDEA! A few miles back into the sticks.... The van just stops. I smell gas! Not out, so must be fuel pump or fuel injectors... (Remember I use to drive a race car, I know about theses things.) I call Christy... Good, she is very busy and no help so cannot leave Autozone.... Bad. I call Chris.... Good, he is very busy and no help so cannot leave Advance... Bad... VERY BAD AND NOW I, AM VERY MAD... BAD! Chris tells me to call a wrecker.... Good... No phone book in the van... BAD! Christy calls back and tells me she is coming to get me... Good.... She tells me phone number to call.... Great!

I call Dick's Place (where we get our cars worked on), they know me... Great! Everyone in our little town know the people that's Grandson just died of cancer... BAD! Wrecker coming right away... Great! Christy lost.... Bad! Hot, very hot in van.... Bad. Open doors and windows... Good... bugs... BAD! I am about to scream.... BAD! Robert getting upset and little scared (remember we are out in the sticks).... BAD!

Then Maxie comes to check on us. In the door comes our little back butterfly with the beautiful blue spots and lands on the inside of the van. It just sits there while I talk to it. Christy finds us... Great! I tell Robert to put the butterfly out... and it get right on his finger.... Strange! He walks over to Christy's car and shows her the butterfly and it just sits there..... very strange! I tell Maxie we are fine and the butterfly fly's away...

Christy's car cool.... Good. Pass wrecker just a mile or so on our way back to town... Good. Christy stops to get a sub... good (she was not going to get lunch today.) Good...

We go to Burger King (so Robert can get Yugioh toy).... Good... they are out... Bad! Go to Kmart and find the last 4 packs of colored index cards and last 3 composition books... Great! Go to grocery store... look at meat prices... a 2 pack of small rib eyes... over $17.00!..... Bad! I get frozen chicken breast and go home... Good... No dog pee or mess... Great!

Going to bed soon... best of all.... GOOD NIGHT!

Maxie, I love you...
Grandma Julie

---

Wednesday, August 25, 2004 10:30 PM CDT

OK, OK, OK...

I am hooked.. to you guys and writing...

Nothing new here... We are trying to get Robert to bed in his own room... and to bed before 1 or 2. He still follows me to every room in the daytime. He just does not want to be alone any!

You ask his size... 12 slim pants.. large boys shirts... used is great... he does not care yet! YET! Remember Gloria Vanderbilt jeans..? I still remember when Christy would not wear Sears or KMart any longer and wanted name brands. Thanks to 2 sets of great Grandparents that spoiled her, she had lots of clothes. I never bought any clothes for she or Stan growing up. Stan was the only Grandson and after Christy got kidnapped at 10, she was very spoiled. (Good thing we wore the same size most of the time...LOL)

Well, she and Robert just got home from work... so better get off so she can get on. Night all....

Night Maxie and Stan, I love you... (more)
Grandma Julie

---

Tuesday, August 17, 2004 (JULIE'S WRITES)

I DO NOT THINK I CAN WRITE ANY LONGER. EVERYTHING I THINK ABOUT OR TELL ABOUT IS SAD. I LOVE CARINGBRIDGE AND WILL KEEP CHECKING ON A FEW KIDS BUT I REALLY CANNOT HANDLE WATCHING MORE CHILDREN SLOWLY GO DOWN HILL AND DIE. SO MANY NEVER GET WELL FROM CHILDHOOD CANCER. I HAVE NOT READ ABOUT ANY CHILD THAT HAD WHAT MAXIE HAD GET WELL.

I MUST STOP THINKING ABOUT CANCER FOR A WHILE, I JUST MUST!

HOW ARE WE? WE ARE VERY BROKE, BENT AND HURTING SO MUCH. I GOT UP LAST NIGHT AROUND 4 AM TO RUB AND PET CHRISTY BECAUSE SHE WAS CRYING SO HARD. CHRIS IS STILL VERY SAD AND TIRED. ME... I STILL CRY EVERY DAY AT LEAST ONCE OR TWICE. SEPT. 9TH IS COMMING UP WHEN STAN DIED AND THAT IS ALWAYS HARD FOR ME. ROBERT IS NOT EATING RIGHT AND DOES NOT WANT TO GO TO BED UNTIL CHRISTY DOES AND SHE DOES NOT EVEN GET HOME FROM WORK TILL AFTER 10 OR 11 PM. HE HAS NOT SLEPT ALL NIGHT IN HIS ROOM FOR ALMOST A YEAR NOW.

SCHOOL STARTS SOON AND HIS SIZE 8 SLIMS ARE ABOVE HIS ANKLES AND NEEDS 12 SLIMS NOW. NEW SHOES, SCHOOL SUPPLIES AND FEES. I JUST HATE SCHOOL FEES. THEN ABOUT THE TIME YOU THINK THAT IS OVER THEY SEND THEM HOME WITH JUNK TO SELL AND THE GUILT IF THEY DO NOT SELL THE MOST. I AM DREADING SCHOOL STARTING AND ME BEING ALONE IN THIS HOUSE. SO ALONE!

I AGAIN WANT TO THANK EVERYONE ON CARINGBRIDGE, MY "CHEMO ANGELS" AND "MAKE A CHILD SMILE". WITHOUT YOU WE WOULD NOT HAVE MADE IT THIS LAST YEAR. YOU BECAME OUR TRUE FAMILY, YOU REALLY DID!

YOU HAVE MY EMAIL ADDRESS AND CHRISTY'S TOO. WE ARE NOT GOING ANYWHERE IF YOU WANT TO WRITE TO US. A LOT OF YOU HAVE ASK AGAIN WHEN ROBERTS BIRTHDAY IS. IT IS OCTOBER 26 AND HE WILL BE 10 YEARS OLD. PLEASE KEEP IN TOUCH BUT WHAT I NEED NOW IS TIME TO HEAL.

I WILL LOVE AND THINK OF YOU ALWAYS,

MAXIE I LOVE YOU THIS MUCH! (Holding arms out as far as I can.)
JULIE ASBURY LAGOURNEY
(MAXIE & ROBERTS GRANDMOTHER)

MY ADVICE TODAY:

LAUGHTER IS THE ONLY CURE FOR GRIEF.
DO IT NOW, TO NOT PUT OFF TILL TOMORROW.
HUGS YOUR KIDS MORE.
PLANT A TREE EVERY YEAR AND THINK OF MAXIE AN OTHER CANCER KIDS.

---

Thursday, August 12, 2004

PLEASE, PLEASE, PLANT A TREE IN MAXIE'S HONOR!

This letter was sent to me today from a friend in Texas. How and why it was sent to her I have not had a chance to ask. As hurricane season is upon us again, memories of Maxie being in the hospital last year flood into my thoughts . He was so upset when he finally got to go home, so many more trees were down. He would see a lumber truck on the way to the mills and tell me why this small planet needed trees so very badly.

I am again asking that this fall and winter to plant a tree in Maxie's name. If not in your yard, ask your school or church if you can plant one there. Just think if every 5th grade class just planted 1 tree, how many new trees there would be!

Maxie lived such a short time but in that short time on earth he touch more people with his strength and purity than most do in a lifetime. Thank You,

Julie (Grandma)



I've read your story. Consider no less than 2 dozen "Maxie" trees planted
on my land.

There will be "rain" trees - when the wind blows through
their leaves, it sounds like a gentle rain... Mimosa trees, which will release a light, sweet scent... as well as fruit trees, so that the "fruits"
of Maxie will continue to be shared...

I am a childhood cancer survivor myself. Diagnosed with a cancerous tumor when I was 8 1/2 months old. I am now 43 years a survivor...
It will be my honor to remember one who didn't survive.

Thank You for providing me with such an honor.

It is my honor! I love trees too! I live in the rolling hills of southeastern Ohio. There are lots of trees here too... Many of them were gravely damaged by an ice storm in 2/2003. The planting of my "Maxie" trees will help replace the oxygenators that were destroyed then, as well as carrying on Maxie's dream... Thank you for allowing others to participate in this....

Jennifer

---

Saturday, August 7, 2004 (Julie Writes)

All is quite here. All the boys on the street are home again and Robert spent the night down the hill. He was so happy yesterday with them all home. I did not see him very much at all yesterday. He and Scott found some tadpoles and had them in the old hermit crap box. Next thing they are gone. In and out all day. I was so glad he was happy and busy.

Chris was off and very tired. At his age and weight working 50 hours a week, standing up is so hard. I usually do not ask him to do any honey-do's if he has not been off in a long time. I let him and his legs rest. Think I am going to buy a battery type weed-eater. I can slowly do most things but start up the gas weed-eater. We sat outside and watched the hummingbirds for a long time. We have both been amazed how many. As close as we can count with them flying everywhere is around 30 eating at the same time on 4 feeders. I wonder how many we will have next year? How long to they live?
Something for Robert and I to look up.

We got Roberts scores on his SOL's and he did great!
English was his worse subject. Wonder why? LOLOLOL

We sold my sons car on Ebay this week. That was a very big step for me! You just do not know how big! Stan had bought it right before he was killed in 1986. I drove it till 10 years till in 1997 we parked it. We were always going to fix for Maxie or Robert but we need the money I need to start living for today, not tomorrow. Tomorrow might not ever come. Life is just to short!

Well, we are fine. Funeral things to do the next few days and I need to see what I can fit into. Family to see again. It is still hard to believe his Aunt Jenny was just here at Maxie funeral, ridding in a Hummer to the service.
Now she is gone. Life goes on....

Maxie give Aunt Jenny a big hug from all of us.

I miss you so much.
Grandma Julie

Hint today:

I was ask to for a hint about the wetting problem. I just wish I had an answer. I have some nightmare stories about that problem. That should be a chapter in my book. My hint is PADS... lots of pads and exercise, but who does that?

"THE MORE YOU CRY THE LESS YOU PEE"

---

Thursday, August 5, 2004 (JULIE WRITES)

Chris's Aunt Jenny died in her sleep this morning. (CANCER) She was at her daughters home in Cumberland, Va. The funeral will be Monday. It seams like that is all his family has done this year is go to funerals. Do things happen in 3's or just in clumps? I hope it is over for a while. The scary thing is, that makes us the elders of the family.

Christy is off today. Robert and I are both glad! He misses her so! He is so lonesome this summer. We have noticed that it was Maxie that cleaned their room. Robert is a little pigpen. I guess he always had Maxie and Grandma to pick up after him. Christy and Robert are upstairs picking up as I speak.

It is raining, again. Christy wanted to know if it is raining so much this year because Maxie died. Are the angels crying? I told her NO, it is because you are crying so much you are making the air saturated with water. It really seams like we take turns having bad days. That day Christy cried so much. The next morning when I got up to let Missy out and feed the hummingbirds, I opened the door and a beautiful black with bright blue butterfly tried to get in the house. It kept flying all around the door and landed on the brick wall and just sat there. I said, "Hi, Maxie, are you thinking about us?" Then after I mixed the hummingbird water, I leaned over to open the kitchen window to get the feeders. The same butterfly tried to come in that window. It again flew all around while I was cleaning and filling the feeders. I went outside later and it was gone.

I told Christy, Maxie was trying to tell her to stop crying so much. We have had enough rain this year!

Robert and Missy are playing chase! I think I will go take a nap! Christy can baby-sit and puppy sit today.

Maxie sometime when I think about you, it feels like someone sucked the breath out of me. I love you more.

<----------------------------------> This much!

Grandma Julie

Hint today:
Why as we get older do we get those stiff little hairs on our chin. The feel like splenters! When you try to find them and pull them out, you cannot see them. Put a little mascara on them or any long hairs you are trying to find and you can then see them. Do not laugh, it works! I put mascara on my eyebrows (before)then pluck them... just so I can see them now... (old eyes).

---

Tuesday, August 3, 2004 7:07 AM CDT

I have not written lately because there is just nothing much in our lives to write about. Both Christy and Chris are working 50 hours and driving a little over and hour to and from work so gone most of the day. When they do get home they are both stressed and tired. Christy's boss went on vacation, now that she is back and Chris is at a new store with a lot of problems.

Robert has been very bored! The boys on the street have been doing their own things and he has been very lonely. One left for camp Sunday. I ask him if he had wanted to go and he said a big "NO." He is so tall for his age, I think we sometime for get he is only 9. Maxie is not here to teach him some things, and go places with him. Chris is trying harder to step in. Yesterday, they went to town together and looked at motorcycles.

Chris called and ask me if I wanted something from McDonalds. They and stopped to eat after going to Walmart and Home Depot to buy me another Hummingbird feeder. I said, "sure, bring me a 20 pack of nuggets." When they got home, as soon as Robert walked in the door he wanted to know if I was going to eat all of mine? He ended up eating 7 or 8 of mine! He is so very skinny, I did not care. 20 is to many and 12 is to few.

The only funny thing lately around here, is the thing I have been doing to Robert of, "I'M NOT TOUCHING YOU!" He is very ticklish so all I have to do is point my finger and say that and he runs. I was telling Christy and she said that they are always saying that at work now. Even the customers do! This is as bad as the "NEMO" sayings! Speaking of commercials, I do not think I will ever get Christy to use a mixer since seeing that comercial about the guy getting his toung stuck. YUCK!

Do not say I told you so! I needed a new hummingbird feeder because someone shot a hole in one of mine with a new BB Gun. Now since my son died because of a gun, we are not into guns in our house. Chris and I bought Robert one trying hard to make his life as normal as we can with no Father or brother around. Robert was sent to his room for a very long time that day. He cried and cried. I felt bad because I know boys will be boys and BB guns will get them into trouble. Chris told me the first thing he shot when he got his Dasiy gun for Christmas, was his Grandmother! It is hard raising kids in this day and time. All we can do is try to do our best and still learn from mistakes. (Plus, I was glad his aim was good enough to hit something!)

Like I said, there is nothing much to write about. I have been keeping up with a few Caringbridge kids. It is so sad! So many die and so many are getting worse. It is hard for me to read about them. I get so upset! Chris tells me to just stop. To stop writing and stop reading! I feel so guilty if I do not read them. Like it will let them get worse if I do or that if I step back, cancer will not be cured. How dumb is that! I hate cancer! I hate that it touched our life and I hate knowing that it touches so many. (Crying)

Today's advice from Grandma Julie:

When you move to a new home, be sure and leave all your bird feeders and a note to the new owners to please feed your birds and how! Birds come back to the same places to nest each year. You might also leave them a map where the septic tank is......LOLOLOL

Have a great day everyone

Maxie I love and miss you so much, it takes my breath away!
Grandma

---

Wednesday, July 28, 2004 6:38 AM CDT

Good morning everyone! It's Christy up early letting Missy go out. It is like having a baby around taking care of her, but I love her that is OK with me.

I am back to work now and feeling good about it. It made me feel sad the other night I put nearly 12 hours and on the way home I felt guilty that I had a "normal" day. How is any day normal without my baby? I felt bad after that but didn't cry! That is something that is hard for me to do. You know you get that crying knot in your throat? I kept swallowing and it went away.

Mom and I were at the gas station the other day and both getting gas at the store Maxie and I went to everyday. Mom had finished getting hers so I pulled up and started to get mine. I saw this blue streak zoom by my head. Then the prettiest blue butterfly landing on my car. And it just sat there while I pumped my gas. I smiled at it because it was so pretty. I hung up the nozzle and it fluttering around me. I sat down in the car and it landed on the windshield. It sat there while I put my card away and got situated and it just kept sitting there. I smiled again and started to cry. I know that this will sound odd but it was Maxie! I started to pull away and it flew beside my window and I said "Hi baby, I love you" and I laughed. It followed me out of the parking lot and was flying behind my car, all the way out of the parking lot! It flew off as I sped up. I said "I miss you! Fly Maxie Fly!". Tears started to stream down my face. it was such a feeling of peace. Since Maxie left me I have been waiting for something to tell me he was good and not mad or homesick. That was it! That was our gas station (where I ran into my red, can opener pole)! And the butterfly was the shiniest, vibrant blue! His very favorite color! I just knew it was him. It is strange to some but it made me feel so good that day and anytime I think about it my heart races with love for my son.

Robert said last night that the first day of school will be sad without Maxie here. I am sitting her wiping tears off the keyboard. Everyday is sad without him. When I am at work I see babies and I feel jealous. I am always thinking Maxie was so pretty when they brought him to me in the hospital. He was so pretty I accussed them of giving me the wrong baby. He is interacial so I thought he would be brown. But since his father(the sperm donor) is "mixed" he came out very light and very white. I yelled at the nurse and said I need a brown baby! She began to tear up and kept telling me he was mine. I opened his blanket and looked at his feet and saw my feet! He was mine! He looked like the Gerber baby with the dimpled chin and perfectly round face. He was so pretty people thought he was a girl.

Now Robert on the other hand! Whoa! He was not pretty and not cute. He had been dry for 10 days plus the cord around his neck. He was so red and flat faced! AND NOT A GIRL!! After a few weeks his face started to push out and he was so so cute and then the curls came through all the dark brown hair. He was awesome about a month after he was born. And still is, I will have a time with the phone ringing when he is in high school. Anyway, I am going back to bed Robert and I are getting hair cuts today and going to eat lunch together. Please leave us a message we love to read them. (Kisses Kim smile)

Maxie my life will not be the same without you. But I am good knowing that you were here to teach me to be a more calm and more loving. I have learned so much from your strength and wisdom that you showed me the last year of your life. The bravest young man I know....

Hey Maxie! What do you think of Momma getting Brad Pitt to donate to Momma for a baby...(he he he)? We could call him Tristan! I should of called you that huh? ** Tri = 3 (Stan's nickname) STAN = TRISTAN ** Bye....

---

Monday, July 26, 2004 *** LIFE DOES GO ON ***

Well, that was a bad week. Just like with my son the week or so before the anniversary day is worse than the day. Do not know why! I guess the dread of the day but then the day is just another day without them.

I woke up mad. Had a bad dream, then when I woke up the first thing that popped into my mind was all the time that maybe Maxie could have gone to Disney and us with no money and "Make a Wish" being jerks. I guess I will never get over putting my hopes into something and being let down like that. Oh, well...

I got up to check on my hummingbird water. My little friends are eating me out of house and home. I have to fill my 4 feeders 2 times a day now! My feeders are right outside my kitchen. One big one out the dinning part and 3 outside my kitchen window over my sink. I just open the window and lean out and get them. I was always told not to put them close together but I did at this house and they come in droves. Last year Maxie, Robert and I counted 18 on and around one feeder. This year Chris went and bought me 3 more feeders, just in case they all came back. They did come back, I think 7 pair. This week the babies are starting to fly and eat. Yesterday, Chris was looking out the window while fixing breakfast. He said, "Come look at this little bird." She was fat and tiny. She was trying to stand on the perch and lean over to get her tiny short bill into the hole. She was so short she kept falling when she leaned way over. She did it over and over again. Finally she put her wings out to just touch the feeder to brace herself. She still fell! We laughed and laughed. I bet she did it 100 times. She was not giving up. We counted about 20 birds yesterday at one time and many more flying around. The males will bump into each other like little rams. Sometime so hard you would think it would hurt each other.

My advice about hummingbirds is... put the feeders close... forget what "they" say. Fix the water 4 cups of water to 1 cup of sugar. Put 1 out very early in the spring, before you see them. I think the scouts come a week or so before looking around. I do not take mine down till they leave. Some people take down so they will go south. How dumb do they think they are? They know when to leave! I also still put food color in mine. I use yellow or green, NOT RED! Put just a drop or two in the 4 cups of water. Robert likes purple but they don't. Chris tried Kool-aid last year, "DON'T".

Well, it is raining in VA. Christy is working full time now. She has days she cries almost all the time. Her boss is great! Robert is just bored. He is getting into doing tricks on his bike. Yesterday, he wanted me to air up the tires on Maxie's bike. It was a better, stronger bike. Robert's bike is only a $29 Target bike. It started raining and the boys all went into Roberts room to play X Box. I was glad. I do not know if the bike is even worth fixing and I do not know if I could air up the tires. I will have to think about that a few days. If I had a $100 or so extra, I would just take him and buy him a new better bike. Maybe on his birthday.

Shawntae is doing great! She and her Mom are staying in a donated apartment close to the hospital. She still has to be close and germ free. They said she might go home in 30 to 60 days.

Chris's aunt is going down fast now. I keep thinking of all the questions we should ask her about their childhood. Makes me glad I am writing my book. If for nothing else but for Robert and his family someday.

Maxie, I miss you so. Love you more!
Grandma

THESES ANGELS NEED OUR PRAYERS!
http://www.caringbridge.com/tx/grantbohannon/

http://www.caringbridge.org/me/lexie/index.htm

---

Friday, July 23, 2004 (A VERY BAD DAY!)

MAXIE, WE WILL LOVE YOU FOREVER!

"FLY MAXIE FLY"

COPY AND PASTE, THEN PUT THIS GREAT SITE IN YOUR FAVORITES!

http://www.catchanangel.com/heroes.html


I am so sorry Maxie we did not know sooner. I am so sorry we could not cure you. I am so sorry you did not get to do all the things that I wanted you to get to. I am sorry I did not hug you just one more time.

WE LOVE YOU.. WE MISS YOU SO MUCH.

CHRISTY, ROBERT, JULIE AND CHRIS

We will see you soon.

---

Thursday, July 22, 2004 8:49 AM CDT

TOMORROW IS JULY 23. IT IS LIKE HAVING 2 DEATH DAYS FOR MAXIE. THIS DAY WILL ALWAYS HURT. IS IT PAIN OR GUILT OR WHAT? CHRISTY CRIED SO MUCH YESTERDAY.

A GOOD FRIEND SENT ME THIS THIS MORNING. I THOUGHT YOU MIGHT LIKE TO READ IT TO.


A little girl had been shopping with her Mom in Wal-Mart. She must have been 6 years old, this beautiful red haired, freckle faced image of innocence. It was pouring outside. The kind of rain that gushes over the top of rain gutters, so much in a hurry to hit the earth it has no time to flow down the spout. We all stood there under the awning and just inside the door of the Wal-Mart.

We waited, some patiently, others irritated because nature messed up their hurried day. I am always mesmerized by rainfall. I got lost in the sound and sight of the heavens washing away the dirt and dust of the world. Memories of running, splashing so carefree as a child came pouring in as a welcome reprieve from the worries of my day.

The little voice was so sweet as it broke the hypnotic trance we were all caught in "Mom, let's run through the rain," she said.

"What?" Mom asked.

"Let 's run through the rain!" She repeated.

"No, honey. We'll wait until it slows down a bit," Mom replied.

This young child waited about another minute and repeated: "Mom, let's run through the rain,"

"We'll get soaked if we do," Mom said.

"No, we won't, Mom. That's not what you said this morning," the young girl said as she tugged at her Mom's arm.

This morning? When did I say we could run through the rain and not get wet?

"Don't you remember? When you were talking to Daddy about his cancer, you said, 'If God can get us through this, he can get us through anything!"

The entire crowd stopped dead silent. I swear you couldn't hear anything but the rain. We all stood silently. No one came or left in the next few minutes.

Mom paused and thought for a moment about what she would say. Now some would laugh it off and scold her for being silly. Some might even ignore what was said. But this was a moment of affirmation in a young child's life. A time when innocent trust can be nurtured so that it will bloom into faith.

"Honey, you are absolutely right. Let's run through the rain. If God let's us get wet, well maybe we just needed washing," Mom said.

Then off they ran. We all stood watching, smiling and laughing as they darted past the cars and yes, through the puddles. They held their shopping bags over their heads just in case. They got soaked. But they were followed by a few who screamed and laughed like children all the way to their cars.

And yes, I did. I ran. I got wet. I needed washing.

Circumstances or people can take away your material possessions, they can take away your money, and they can take away your health. But no one can ever take away your precious memories...So, don't forget to make time and take the opportunities to make memories everyday.

To everything there is a season and a time to every purpose under heaven.


Julie
Maxie's Grandmother

---

Wednesday, July 21, 2004

PLEASE GO SIGN THESES PAGES!

http://www.caringbridge.org/tx/jamesf/index.htm

http://www.caringbridge.com/tx/grantbohannon/

"LIFE GOES ON!"

When you loose a child or someone very close, it is strange that life goes on. You really think that everyone should stop and wait on you. You are shocked when they do not. When people are still driving, shopping and living.

Christy is doing so much better now... I knew once she went back to work for real she would. We have had one big mystery the last 2 weeks.. Driving us both nuts.. Maxie had a blue Pokemon billfold. We cannot find it! We have looked everywhere. Wonder if he took it with him? Christy thought it was in the bag she carried all the time to the hospital. A few nights ago she finally found that bad and got so excited... But it was not there and she cried and cried. We both looked again last night but could not find anywhere. She cried again. We do not have much of Maxie but memories. More pictures than I thought but still we are trying hard to keep every little thing of his.

We went down town to the village to get gas the other day. I was in the van and she was in her car. I had taken her to pick her car up at the place she gets her oil changed and tune up. It was over $200 and we were both in shock. She told me to stop and get gas and she would too. There is only 2 places in Amelia village to get gas. This one is where she ran into the RED pole and scratched her car when she taking Maxie to clinic one day. She was so upset and cried and cried. Maxie and I just looked at her! He told everyone at the clinic about it that day. He thought it was so funny! Anyway, Christy told me that when we stopped to get gas a beautiful butterfly landed on her windshield. It smiled at her. She thought it was Maxie. The whole time she was getting gas she said it flew around her. I told her it was Maxie laughing at her and the tiny RED mark on her car. (Kind of a John Edward's moment!)

Chris's Aunt is not doing good. The cancer has spread more. She is in the hospital to have a stint put in her throat so she can eat. I called Georgia, his cousin yesterday 2 times. She sounded so tired. Cancer, it is a slow bad way to die. We can go to the moon and fly to Mars but cannot cure a cold. The money we spend on pet food, makeup and movies... we could feed the world and cure almost everything... That is my soap box today..

I need to go feed the hummingbirds. The babies have started eating and I am filling my 4 feeders 2 times a day. I have never in my 55 years seen so many in one place at one time. All my neighbors all have feeders. This hill must have thousands of hummingbirds. As I just now look out my kitchen window, I can see hummingbirds, bumblebees (eating my sugar water) 2 squirrels eating my bird food, and birds.. I am starting to like my house with no trees. I can see so much more. Like home in Texas...lol

Have a great day... I am..
Maxie, I miss you so... Take care of Robert, he misses you.
Grandma..

---

Sunday, July 18, 2004 (Julie feeling sorry)

Why when you buy a car or paint your house or get cancer do you start seeing the same car, the same color house and lots
and lots of cancer everywhere?

I have been thinking and missing Maxie so much. I open my eyes in the morning and thoughts just poor in. When alone they surround me. When in the shower they crush me. While driving they always make me cry. Why oh why can't I just remember happy times?

When Stan died it was instant. He was there one minute and gone the next. We were just as sad but we did not have the memories of watching him die. We had his friends around telling us funny stories and Grandparents to talk to. I had Marty, Paige and Christy. Christy had her friends and Marty and I too. With Maxie his good memories are fleeting. All I see is sickness, hospitals, needles, test and him trying so hard.

The first thing this morning I woke up and was again mad at myself for not being at the hospital more. The day he spoke his last sad words to his Mom I was at the my shrink. I was crying all day that day. The tears would not stop. By the time I got to the hospital he had been put into a drug induces sleep never to open his eyes or speak again. I am glad that he was no longer hurting or was scared but I wanted so badly to say good-by again, and again, and again. So selfish of me. I had told him I loved him 1,000,000 times. I told him I was so proud of him every day. Why him, why me, why Christy, why our family. Had we not been through enough already. I often wonder what I did to piss God off so bad. Why did I take the roads I took the decisions I made all seam to be wrong now?

When Marty had a baby late in life she told me she wanted her to grow up to be just like Christy. I told her to ask my advice and then do NOT do it! If I tell you to buy a stock, sell it. It I tell you to turn right turn left. If only.... if only....

God if you love me... and our family... let the pain of life not be so hard. Let Robert and Christy have some good times some good memories. And me... just let there be a heaven and let me hold my boys one more time... Please.

Julie

I lost a very good friend last Sat. to cancer. He did not tell me he had it. He did not want me to worry. I will miss him. Dick Ross, I will miss seeing your name on my buddy list but I will think of your often...

Here are 2 new kids on caringbridge. Grant is the child of a teacher and friend of Paige, my great friend in Tx.. and the Drew is here in MCV in Richmond. Both need our support and prayers. Please go read there page and a note.

http://www.caringbridge.com/tx/grantbohannon/

http://www.caringbridge.org/va/drewb/

---

Wednesday, July 14, 2004 5:10 AM CDT

Hello all, this is Christy. I got up to let Missy out to potty and felt the need to write.

Things are better for me work wise. I have been showing up and having a good time and not making customers mad.(smile) They seem to have actually missed me, asking me if I am ok or need anything. That is nice, I am glad to be back with the "girls" again. No more Audrey though that makes it quiet at times. But glad Tina and Keisha and Michelle are there. Robert is fixing to take his vacation. Daja Vu like this time last year. Makes for nerves being bad. Made Robert (my manager) a little queezy when I reminded him. So nice to have a boss and coworkers who care and mean it!

I cried and cried last night thinking of the fun we had last year going to the races and Maxie getting in my friends race car after the race, then going to eat at Hooters and he just smiled at the girls. And one of them kept rubbing his curly hair and saying what a cutie he is. Robert always get the eye compliments. I miss my "sons" being together. I think it hurts me more for Robert than anything else.

Shawntae was in PICU the last few days she had a seizure and didn't know who anyone was. They say an infection on the brain. I hope its not something else, I just feel bad for the set backs. That is the hardest part of this whole long term sickness you just never know. I will be thinking and checking on them alot more.

Well I sleep awful so back to bed for a while before I work today.

---

Sunday, July 11, 2004 Julie, back home...

Well, Did you miss me? I was gone a few days to NC to see Sharon, one of Maxie's CEMEO ANGELS. I felt like I was gone a month. Nothing to do with Ken and Sharon but I just missed home. I also felt so far away from Maxie. Strange, I felt that way. I was just thinking today, I cannot remember after loosing Stan how long it was before I did not feel guilty when we had fun or laughed. Was it months or years?

Robert caught his first fish, and all I thought about was Max not getting to do it. Robert had so much fun Tubing down a river, and I cried as I walked along the trail watching him. (He does not know how to swim!) I wonder what the people thought as they passed me? Robert would have done that all day! Sharon had a great friend that had her 2 Grandboys with her for the summer. They were fine boys and were very very nice to Robert. I liked them! They pushed him into the white water with him saying NO, NO, NO but loving every minute. Maxie would have laughed all the way down and helped Robert carry his tube back upstream 100 times.

First thing Robert did when we left Amelia, was put in a CD that had music that was played at the funeral. I started crying so hard I could just see to drive. Poor Robert just gets quite and looks at me. I did not think I was going to able to make it out side of our county. A few short years ago I could hardly go a few miles from my house without having a panic attack and here I was trying to drive 400 miles from home, ALONE! Thanks dew to lots of new meds and great doctors. I even went to Wal Mart and I just panic in Wal Mart. Still hate it...lol

Robert made some new memories without Maxie and that was why I went. We really had a great time and met some very nice people. It is beautiful south of Asheville, NC. The mountains are great. The streams are perfect. I just was very homesick. Robert did better than I did. Christy missed Robert a lot and cried at work yesterday. Her boss Robert just held her. He has been great support! Chris missed me too, but I think Missy the dog and Gretta the cat missed me the most!

Well, NASCAR is on and I am tired. House messy from unloading the car. Missy wanting to play but I just fed the hummingbirds (we have at least 7 pair) and I am going back to bed. Chris and Christy gone to the store and Robert down the street with the boys.

Sharon and Ken, thank you for trying to make me happy.

Maxie I miss you more each day even if I cry less. There better be an after life or I am going to very pissed. I want to be with you so bad. I miss your laugh the most now. You had the most beautiful laugh. They should have taped it and used in movies. I feel so bad for the other parents of children that cancer has taken and the ones that are on this trip.

Grandma Julie

---

Monday, July 5, 2004 Julie writes

To Ambers Mom:
Please give this letter to Amber when you think she is ready to read it.

To Amber,

I have been wanted to write to you since Maxie passed away. I wanted to tell you a few things I think you should know.

First, most people never find true pure love, and when they do it is not at 10 years old. Maxie did love you and it was so true and pure. Most of us do not spend the rest of our lives with our first love but most do not loose them the way you did. I am so sorry! I am glad you loved Maxie before he got sick and very glad you loved him after. I think God sent you to him and maybe him to you. Try not to feel sad. Try the rest of your life to treasure that first pure love.

I wanted to explain to you why we had Maxie cremated. Your Mom said you did not understand. Did you know I lost my only son? Maxie’s and Robert’s Uncle Stan, Christy’s only brother. He was only 22 at the time. He was beautiful and Maxie looked a lot like him. They even acted a lot alike. Both were very smart and funny. Anyway, Stan is buried in Dallas where we lived at the time. After he died, I went to the cemetery almost every day at first. I would scream and cry or just sit and think. As time went on when I went there, I started thinking about how he must look NOW! I stopped thinking about the good times or even cry about him being gone. All I could think about is what he must look like now after months and months. I started asking people what they thought bodies look like after months or years. It drove me nuts.

I told my family about it. My Father-in-law and Mother-in-law decided to be cremated. I called my brother, he is a doctor and he said he wanted to be cremated and scattered over the county where we were all born in west Texas.

I decided then that I wish I had cremated Stan and scattered him in the Gulf of Mexico where he went surfing. He was so happy there! I had not made up my mind about me till we moved to Virginia. My Mother-in-law died and my Father-in-law came to stay with us. He had put her ashes in a beautiful cherry box big enough for the both of them. We bought a niche at Dale Cemetery to but them. I thought it would bother me, her sitting on Christy’s dresser, but it did not. Chris’s Dad talked to her every day. When he passed way a few years later we added his ashes to hers and put the box in the niche together forever.

A few months later I was watching the Discover channel late one night. They were showing how they got the bodies ready to be buried. How they embalmed them. I started crying so hard thinking I had done that to Stan and I never wanted that done to me, ever! The next morning I told Chris and Christy that I wanted to be cremated and scattered over Stan’s grave. Chris said he wanted to be scattered in the mountains, in a beautiful stream. He loves the Virginia Mountains. It was settled and I never thought about it again till Maxie got sick.



I kept asking Christy what she wanted to do later on if and when Maxie died. She would not talk about it. So I left her alone about it. When he was put in ICU the last week. When he could not breathe anymore on his own and they put him on the lung machine, she finally said we need to decide. At the end, he did not want any more sticks at all. Not even his finger! He had over 16 IV’s running into him trying to keep him alive. Christy said NO MORE IV’S! NO MORE NEEDLES! She wanted him left alone to die as he was born. (Sorry, I am crying). We ask that all the tubes and needles be removed. To turn him over so we could hold him. They took everything off and turned off the lung machine. I was hoping he would take a breath on his own and open his eyes and be well, but I knew that would not happen. His heart slowly stopped beating. He opened his eyes when his heart stopped, one last time! I then I think his sole was so relieved. I think Gods angles were right there waiting to take him. I think they were waiting for us to be ready, not him.

I am sure Stan and our parents and Grandparents were waiting for him at heavens door. He was no longer in any pain. He was healthy again. He was only sad for us he left behind because we were so sad. He wanted us to stop crying and know he was OK. The angles told him that was part of our grieving but we would all be together soon, and to go run and play, they would take care of us.

We did not want him to be touched one more time. We did not want him put in the cold ground, around people he did not know. We did not want to ever move away and leave him behind. We did not have him touched or embalmed. We wrapped him in his blanket and had him cremated. No needles, tubes, no rotting just dust to dust like the bible says. We picked out a beautiful silver box. It has a picture of heavens gate and his name and “Turtle” on it. It sits on Christy’s dresser with his moose sitting on top of it. She can cry or talk to him all she wants. If we move, he can go. If she wants him with her forever he can be. If she wants to bury him in a beautiful place she can.

He felt no pain. He had no more sticks or tubes. He was an old sole and why God sent him to us or took him from us we will never know. I am glad I had every minute I had with him. I am glad he had you in his life. When you see a rainbow or a “Turtle” crossing the road, think of him, please know he is fine and not hurting any more. That he loved us and he loved you too. Go be happy. Let him hear us laughing not crying.. Let him see us living for him. Never forget him, but go on with your life. Please.

You are in my thoughts and prayers,
Julie, Maxie’s Grandmother

---

Saturday, July 3, 2004 12:00 AM CDT

SHAWNTAE IS A LITTLE BETTER! I WONDER IF THE NEW BONE MARROW IS STARTING TO WORK? ROBERTS STITCHES SHOULD BE OUT TUESDAY AND HE AND I ARE DRIVING TO N. CAROLINA.
PLEASE KEEP US IN YOUR PRAYERS..

WE RECEIVED THE MOST BEAUTIFUL LETTER THIS WEEK, FROM Dr. MASSEY. SHE IS ONE OF THE 3 DOCTORS THAT MAXIE HAD. SHE WAS MY FAVORITE AND IS THE DOCTOR THAT HAD TO TELL US THAT MAXIE WAS DYING. SHE STAYED LATE THAT NIGHT AND EVEN CALLED BACK LATER TO CHECK ON US. SHE WAS SO UPSET! I THINK LATER SHE TOLD ME SHE HAD 9 NEW CANCER CASES THAT WEEK. I KNOW SHE HAD TO TELL 2 OR 3 OF PARENTS THEY WOULD NOT MAKE IT.
HERE IS THE LETTER.

Dear Christy & family,

Just a note to let you know that I have been thinking of you & and your family over the past several weeks. I know there is not much I can say or do to ease the pain of the loss you must feel.

Maxie was one special little guy and I still keep thinking I'll walk around the corner in the clinic and see him. He exemplified the best of the human spirit and it was a true privilege to have known and worked with him. I just wish things had turned out differently. I truly hope that God, family, friends and time will all help you through these difficult moments. I know the happy memories of Maxie will always there to warm our hearts and bring smiles to our faces.

Please accept my deepest sympathy and know that you are in my thoughts and prayers.

MAXIE, YOU TOUCHED SO MANY PEOPLE IN YOUR SHORT LIFE!
WE LOVE YOU AND MISS YOU.
GRANDMA

---

Wednesday, June 30, 2004 Julie writes..

Christy went and spent some time with Shawntae last night. It was good but very hard on her. She said she cried a few tears on the way to the hospital, a few in the elevator but by the time she reach the hall she was balling. Sheila told her she did not have to go in but as soon as she saw the room and Shawntae she was fine. Shawntae is not in the same part of the hospital and I do not think Christy could have gone back to the 7th floor so soon.

Christy and Shawntae talked a lot about Maxie. I am glad! Most people do not want to even say his name, like he never existed. She ask Christy if cucumbers were his favorite food? He did like strange things! She said on the days that they had salads at school he would go around the lunch room and steal everyone's cucumbers. LOL

She told Christy that the 4 of them all ran around together. Shawntae, Amber, Maxie and I think a girl named Sarah. She told Christy that Amber really loved Maxie. That Amber wanted to marry him someday. They talked about how pure their love for each other was. Not silly but the caring kind of love. They were like best friends that knew life was going to be to short. I am glad now that he had that. I worry about Amber. Her Mom did not let her come to the funural.

The nurse told Christy she remembered Maxie, (different ward remember). On one visit to Shawntae, he ask if he could give Shawntae his bone marrow. The nurse was listening to them talk about Maxie and she and Christy said at the same time, "HE WAS AN OLD SOLE." I have to believe this was his last trip to earth and I still believe he was sent to me to teach me to love again after I lost Stan and my Mother. He touched so many lives in his short time on earth.

They were talking about the puppies. Shanwtae turned back over and said "Maybe Maxie wanted her to be with him!". I am glad Maxie will be at heavens gate if Shawntae has to leave. We worry about her Mom. No one that has walked these paths ever wants another to have to walk them. Shawntae has fever and was packed in ice. She has zero white count. She and her family need all of our prayers. She wants to go on a Disney cruse when she gets better. I hope she gets her wish.

Christy saw the night guard. The 7th floor has a guard at the door most of the day and after a short time you get to know them. He ask Christy how she was doing and that he thinks about Maxie and her a lot. He said he had a lump when he heard he had passed away. I think I was the one that told him.. and he did get tears in his eyes. Maxie use to like to walk late at night. There was a lady guard that use to ask for his passport.

I remember the last time he walked down the hall. He always tried so hard for me. He walked down to the end where there was a love seat that I was always saying I was going to drag up and put in our room to sit on. I was still trying to get him strong enough to come home. I remember telling him the was fighting an infection not the cancer right now and we were going to get him better so he could eat and go home.

Sorry, I was crying so hard I had to stop. I was so wrong. I wish now I had picked him up and just took him for a ride or home to die. Called and got the Hummer that day. Time.. it just slipped away so fast. I so wish now.. we had not cooked that baby inside. I wish the day they did the first surgery they would have took everything out they could. Put him on a transplant list that day. If he had been in a car wreak or gun shot I bet they would have. Why with cancer do they want wait and see... I know now they knew he was not going to make it... They should have told us from the first day... (am crying to hard to type!)

Maxie, I am so sorry. I miss you.. and I love you more.
Grandma..

---

Tuesday, June 29, 2004 (JULIE WRITES)

Sorry I have not updated, I have not felt good. Lupus fibromyaliga is a crazy thing. You do not look sick but you are so so tired. It effects my muscles and skin the most. It is like having the flu all the time. Enough about me...

Roberts toe is doing great! He cannot go outside and play much, so guess what he discovered the last 2 days, the computer! He gets mad if any of us is on line! Do you remember your first few weeks learning about a computer,LOL. At 9 years old, I wonder how much this generation of kids will know about computers when they are grown? We have 3 computers in our house. (No, not rich at all.) We have mine.. and old 1997 Compaq (I hate it, and I work on it all the time.) When Christy moved back home she had an old cheap E machine (that I just love). Then Maxie's new lap top. I so wish now I had bought it the first week for him when he got sick. I had no idea how many weeks and months he would be in the hospital. He loved it. I love hindsight, anyway, Robert was on all 3 yesterday. I never knew where to find him, kitchen, den or bedroom. Christy and I were laughing at him all day. Guess it is time to change my settings!

Robert and I are still planning on going to NC to meet one of Maxie's chemo angels. (See link below.) He had 2 angels and liked them both. I am so glad God picked them for him. They made him happy and that is what they are for. They did a perfect job. Thank you, both.

Maxie has a new friend to show around in heaven. IAN passed away on Father's Day. I hope all cancer kids get together up in heaven. What a club that must be. Please go read and sign IAN's page. The next weeks, months and years are so hard us that are left behind.

Maxie, I miss you more each day.
Love you more,
Grandma

---

Friday, June 25, 2004 1:38 AM CDT

WHAT DID I SAY ABOUT NORMAL... !

First Christy went to the doctor and did have a bad ear infection and Strept throat. Then today..., how can a kid who sleeps till 2 get into so much in just one day?

After he got up and dressed he went down the street to Scott's house. Our house is at one end of about a 1/2 mile dead end street, ours at the top of a hill. The boys on our street... (9 of them) like to ride bikes up and down the road. Robert came in and said he was hurt! He slowed us his leg with a bad road burn all the way down one side. I ask what happen? He was ridding Scott's scooters. The kind you stand on and push and fell off. OK.. a normal boy thing right.. I just love baby wipes.. and out the door again.

Then tonight ... about 11 PM we heard a lot of noise outside. Our neighbor was driving in and out of his drive way and making all sorts of noise. I told Robert to put on his Mom's shoes and take out the trash and see what the neighbor was up too. Just a few seconds later, here he came with tears in his eyes.. I CUT MY TOE... (NO SHOES)

Now there is blood dripping all over the kitchen floor.. and I told Christy to put pressure on it.. We used 2 or 3 hands full of paper towels and it was still gushing... Christy finally got enough of the blood off to see about a 2 inch long cut about 1/4 inch deep up and down the bottom of his big toe.

OK ... stitches.. are needed so I hold while she gets dressed and she holds the toe while I get something on.. and off we go to town.. It is a good 45 minute drive with me turned around holding his toe between the seats. My back is now killing me!

This is the first time back to this hospital since the day Maxie was taken to the ER July 23rd last year. The doctor that had treated him had just left. I cried just a little on the way.. It got to Christy after they took us back to the treatment room. There was the room he was in! There was the room the doctor took us to tell us she thought it was cancer! It was so hard. She cried... The only thing funny was how torn up this skinny kid was. Everyone kept asking what happen to his leg! Social services will probably show up tomorrow... (Joke, I hope!)

Robert did not cry one tear.. He even watched! He did say the shots hurt a lot but did not cry. He wanted to know how many stitches even before she started. He had to have 5. Now 10 to 14 days before we take them out, closer to 14 she said. He is trying to mess up our trip to see Chemo Angel Sharon. NO WAY...

What did I say about normal...

Maxie, everywhere we turn you are there. We miss you so. I love you.
Grandma

---

Wednesday, June 23, 2004 (Julie writes)

We had a few normal days... What is normal ... when nothing big goes wrong? No one hurt bad enough to go the hospital, no major appliance that needed to be replaced, no pet died, no hurricanes or tornadoes,
cars running and at least $10 in my bank account.
Now that is a good few days around our house.

Christy still having trouble sleeping and sinus ear problems. She did work Monday 6 hours but could hardly walk when she got home. I keep telling her that she has lost all tone in her muscles and she needs to slowly get back into some kind of shape. We both do, no we all do but Robert!
He just needs to eat and stop growing so tall.

Christy had a very rough time the last few days worrying about Shawntae Smith's Mom, Sheila and Shawntae. Shawntae had her bone marrow transplant last week. She now has a very bad infection in her intestine so cannot eat, a staff infection and Rheumatic fever. Christy called her Mom late last night. Her Mom's voice was cracking as she talked! Christy cried and then cried again later. She came in my room just to hug me and cry and she does not do that often! Christy wants to go to MCV tomorrow if she is not sick. (She cannot go.. she has sptrept throat and ear infection.) She wants to help Shiela set up her Caringbridge page and Chemo Angels. Shawntae is an only child and Sheila is a single Mother. We so relate!

I remember the second time we saw them in the clinic. Maxie came running and sad "SHAWNTAE IS HERE AGAIN!" He knew that all kids that are there are very sick and most with cancer, sickle cell or something very serious. I went around to the room she was in. The door was open and the room had Shawntae, Sheila, her Grandmother and Grandfather (I guessed). I called Christy and told them they were at the clinic again and the family had that deer in your headlight look. The same look we all have that first few days and weeks when our child is seriously ill. Maxie was upset! He got very quite.

Shawntae is in Maxie class in Amelia. The same room not just the same 5th grade class. The day that Maxie got to go home from the hospital when he was first diagnosed after his first surgery and long hospital stay, we wanted to stop and get his hair cut.. (Would not do it again that way!) We went into a beauty shop and they all were so very nice to us. I decided to cut my hair very short also. I knew I would not have time to curl and fix for a while. A very nice lady cut my hair while the shop owner cut Maxie's. As it turns out.. the lady that cut my hair that day was Shawntae's Grandmother. I had remembered her saying she lived in Amelia like we do. If you want to write her she is in:
MCV HOSPITAL or Virginia Commonwealth University Health System, N-10-17,
1250 East Marshall Street, Richmond, VA 23294, 804-828-9000.
If anyone wants to send her a card or her Mom a donation.

I will keep you informed. Please say and extra prayer for her and her family.

Maxie please watch over her!
I love you.
Grandma

---

Monday, June 21, 2004 Summer is here...

SUMMER IS HERE!

Today is the longest day in the year. Yesterday was beautiful here in VA. It was cool and nice so I mowed. I am not supposed to go in the sun so I wore a long sleeve shirt and hat... I did about half my yard then gave up. I kept thinking about how bad I was going to feel. If we every move back to town I want a very very small yard or none at all.

Robert I had a very nice time with is friend, Scott. Thank you for asking. He is so bored. If you are born an only child you learn to be alone from the beginning but he is the second child and the baby. He always had Maxie around to pester or play with. It breaks my heart when he plays his Playstaion II game. He is always asking me to sit down and watch him. Christy always had Stan till she was 17 how ironic! He was 5 years older and a great brother, just like Maxie was..

As for "Make A Wish", I have no idea if anyone else has written them. I wrote them long ago when they first had said the family in the same home could go on any trips then changed and said Chris and I could not go. Maxie did not want to go with just Christy and Robert! I wish he had! The money it has now cost because of the Parvo thing. If only the shot records had been sent and a voucher to get all the first years shots done. I even think they should have given a years supply of food and grooming. Gee, they send some giant familys to Hawaii or Disney. I met a very nice family on Caringbridge that "Make a Wish" took there whole family and the girls best friend, but they would not send the 5 of us together to Disneyworld (and we live on the East coast). I do not understand, never will. I have listed on my links the two best organizations that helped us the most. Without them and Caringbridge we would not have made it the past year, Autozone also... OH WELL! It takes to my energy to be mad.. so just forget it!

Missy is doing fine so far. In a few weeks we are going to have her fixed. I keep telling all boys that come see Robert not to bring their dogs but they do. I hope they do not get sick.

Chris's Aunt Jenny (his fathers baby sister) is not doing well. She is crying because she can no longer swallow real food. After her daughter called yesterday and told us, I cried. I started thinking of the weeks and weeks and weeks Maxie could not eat at the end. He wanted to so bad. (crying again)

Maxie, I wish I could have had cancer instead of you.... I love you so.
Grandma..

---

Saturday, June 19, 2004 HAPPY FATHERS DAY!

ROBERT THINKS ANGELA IS BEAUTIFUL. GUESS THE BOYS HAVE THE SAME TASTE. THEY ALL WENT OUT TO EAT AND CAME HOME EARLY. WE SHOWED ANGELA THE FEW MOVIES WE HAVE OF THE BOYS. SHE WAS VERY TIRED AND SPENT THE NIGHT. SHE SLEPT ON THE BOTTOM BUNK AND ROBERT SLEPT WITH HIS MOM. ANGELA SAID SHE SLEPT GREAT, (YEA SURE). SHE FEELS JUST LIKE FAMILY TO US.

I SLEPT FOR THE LAST FEW DAYS. I DO THAT WHEN MY LUPUS IS ACTING UP. I THINK THE SEASON CHANGE AND HEAT HAVE SET IT OFF. I DECIDED YESTERDAY NO MATTER HOW I FELT I WAS GOING TO TAKE ROBERT TO A MOVIE. CHRISTY DID NOT FEEL GOOD SO WE JUST WENT ALONE. WHEN WE GOT TO TOWN I FOUND I HAD LEFT MY BILLFOLD NEXT TO THE COMPUTER SO WE HAD TO GO GET GRANDDADDIES BANK CARD. FINALLY WE MADE IT IN TIME TO SEE HARRY PORTER. IT WAS LONG AND NOT A GOOD AS THE LAST ONE, OR MAYBE IT WAS BECAUSE MAXIE WAS NOT WITH US. IT WAS SO HARD TO WALK IN THE THEATER WITHOUT HIM. IT IS EVEN HARD TO DRIVE THAT DRIVE TO TOWN.. SO MANY TRIPS TO THE HOSPITAL AND CLINIC!

ON THE WAY HOME I STARTED TO WORRY IF CHRIS HAD ENOUGH GAS, SINCE I HAD THE BANK CARD. I CALLED HIS WORK BUT HE HAD JUST LEFT. I WONDERED IF I WOULD PASS HIM ON THE WAY HOME. JUST THEN, ROBERT LOOKED OVER AND SAID THERE HE IS! STRANGE, 10,000 CARS ON THAT ROAD AND WE WERE RIGHT NEXT TO HIM. FOR YEARS AND YEARS WE USE TO CALL EACH OTHER AT THE SAME TIME. SOMETIME I WOULD PICK UP THE PHONE TO CALL HIM AND HE WOULD BE ON THE LINE. WE WOULD BOTH BE DIALING OR SAYING HELLO... NO RING? ONCE IN DALLAS WE BOTH WERE ON OUR WAY HOME FROM WORK AND ENTERED THE FREEWAY FROM DIFFERENT PARTS OF TOWN AND WERE NEXT TO EACH OTHER. WE HAVE BEEN THROUGH SO MUCH IN OVER 40 YEARS! NOW I READ CHRISTY'S MIND... IT DRIVES HER NUTS!

WELL, ENOUGHT ABOUT ME...

HAVE A NICE WEEKEND AND FATHER'S DAY.
MAXIE.. WE MISS YOU SO...
GRANDMA

---

Thursday, June 17, 2004 (Julie writes)

MISSY HOME....

VET THINKS SHE WILL BE OK. SHE SAID THAT WE SHOULD NOT HAVE PUPPIES. NOT BECAUSE OF THE PARVO BUT HER BITE IS OFF TO MUCH AND IT HURTS THEM SO BAD TO HAVE PUPPIES. THE HEADS OF THE PUPPIES ON THAT BREED ARE SO BIG! SHE WAS SO HAPPY TO BE HOME.

CHRISTY, ROBERT AND ANGELA (REMEMBER MAXIE NURSE HE FELL IN LOVE WITH) HAVE GONE OUT TO EAT. THAT IS GOOD... CHRISTY LOVES HER AND THEY BOTH NEEDED TO GO OUT..

WELL, I DO NOT FELL WELL... MY LUPUS FIBRO IS ACTING UP SO GOING TO CUT THIS SHORT...

MAXIE... LOVE YOU...
GRANDMA

---

Wednesday, June 16, 2004 (JULIE WRITES)

I am a cat person!

You put down water (but they drink from the toilette). You put down food and a box of sand and just forget them. You can leave for a few days and not worry. They cuddle when you are sick and play just enough. They are very low maintenance. Our #1 cat, "Patches" was adopted a few years ago. She must be a lot older than they said, her teeth are falling out and she is a grouch.
She plays about once a week and sleeps on my feet at night.

I have this basket I put toys in that I find downstairs. Robert is supposed to empty it. Patches crawled up in it and just watched us walk back and forth. I finally told Robert to get the camera, knowing she would move when I did. She did not, she just sat while I took about 8 pictures of her.

Missy is still in the hospital. Cannot come home till she starts to eat! So far she is acting OK but not eating. Christy has pouted all day about her. I will never forget the night we went and got her at the pet store. The minute they took her out of the cage, she ran to Maxie and Robert and played. I loved the smiles and laughs as she ran around and gave them puppy kisses.
Don't you love the smell of puppy breath?
Missy and Charlie will forever be a good memories of Maxie in my heart.

Missy has been very good for Robert and Christy too. I hope she does OK.
Thank all of you that have written and said you hoped so too.

Christy is going back to work next week. Robert and I are making plans for a short trip to N. Carolina after July 4th. Other than that, I want to teach him to swim this summer, fat or not....lol

I will keep you posted on the puppy. Thank you for being here.
I am busy selling on Ebay again (finally). (PARTS-AND-PIECES)

Maxie I love you more!
Grandma...

---

Tuesday, June 15, 2004 (Julie writes)

We went ahead and took Missy to the vet today to be treated for Parvo. I do not think this family can handle any more deaths right now. We are all so attached to her. Chris was attached to Sissy the most. I am so sorry that we did not take Sissy to get her shots over again, but we just kind of shut down after Maxie died. I would have never thought about her getting Parvo. Until I read the link about it, I had no idea how easy it is spread. Missy will have a 50 50 chance of living.

The breeder (Lori) in Ohio, that raised her said she did send the papers to "Make A Wish" so it was not her fault. It was our fault, but "Make a Wish" did not offer to pay for her shots or to be fixed or anything. Just dumped her in Maxie's arms late one night at the package pick up at the Airport. I found out later they were supposed to have him a party and everything. Christy had called them and called them about the AKC papers and shot records.. but we never got any.. Oh, well, water under the bridge. I will never forgive them for Maxie not going somewhere or doing something during the fall when could have!

You want to hear a cute story...about Robert?

Robert was sick yesterday, throwing up. We called Chris and ask him to stop and get a few things.. (Poor Chris, went to 4 places.) Anyway, we ask Chris to get Robert some green sherbet. Late last night, Robert got a big bowl of sherbet and came into my room. He mumbled something about it needs to be in a big bowl. I was watching the news and did not understand. I ask him what he was talking about. He looked at me so serious and said " It is in a box! It needs to be in a bowl! It will fall right through the box!" I then realized he had never seen ice cream in a box, we always buy in a tub, never a box..
He was just so serious...lol

Christy just said she wish Missy could had a cell phone at the vet so she could call her, that she misses her. I told her she does not even love me or would miss me that much if I was gone!.

Robert is going to see if one of the boys down the street can spend the night. His first sleep over! I looked at Christy and said it was OK with me.. but remember, that means someone is going to sleep in Maxie's bed! Well, life must go on. I am just not ready. My heart has hurt so bad all day for Maxie. It takes my breath away sometime.

I will let you know how it goes...

Maxie I love you.
Grandma

PS: I put a picture of me once.. that is enough!

---

Sunday, June 13, 2004 (Julie writes)

Another weekend! School is out... for the summer.

Christy slowly getting better.. Robert booooooored... driving us nuts already and it is just the beginning of summer. It is going to hard to find things all summer to keep him busy and learning.

Chris and my colds are better. He is coughing some but going to make it! The bad news is Sissy. The little puppy from "Make a Wish" is dying! Do not ask, we do not know from what! She has acted yucky for a few days and then started throwing up. She does not eat or drink. We took her in town today to an ER Vet. They ask you what you want to spend? I told Christy a $1.00. It was $70 just to have them look at her! He said he could not tell without blood work and scans. That would be over $600! If she had to have surgery, in case she swallowed something, it would be over $1200. Now this is a $400 dog, that still wets my carpet!

Chris likes her the most so we ask him. He gave us that look like ... we do not have the $70 so why are you even asking. We took her home! She is upstairs on Christy's bed. I do not think she will live through the night but if she does we are going to take to the local vet in the morning and see what she says. She does not look to be in any pain. Did she get poison, bit or swallow something I do not know!

(Update)IT IS PARVO... We had her put to sleep this moring and are watching Missy for signs. It will just kill Robert and Christy if Missy gets it to. Thank you again "Make a Wish" and the breeder for not ever sending us the shot records so we would have known what she needed!

Robert just got sick 4 times in the last hour. I am thinking stress and nerves. I am crying... So tired of life problems and stress. We just spent over $400. we did not have, and we still might loose Missy.


Christy said Robert is learning to much about death this year. Charlie, the dog not long ago got ran over, the 2 Hermit Crabs died also. Life lessons should not be learned in such a few short months.

Robert caught a land tortoise yesterday. I told him that my Mom and I use to take paint or nail polish and make a sign on the shell to see if we would ever see the same one again. Out in west Texas when you water they come up in the yard to drink. We often saw them with little pink nail polish on top or white paint! Robert ran upstairs and got some bright pink polish and I put a big "R" on this one. I later got bored and for the first time in years painted my nails..... PURPLE! Christy had some strange colors. When Robert saw them he said I looked girlie.

Maxie, Granddaddy had on a "Snoopy" Band-Aid today. I got them to use when Granddaddy gave you your build up shots but you hardly never bleed. Granddaddy cried when he thought about you. I think he holds his feeling in to much. He said he missed you more than Stan, (but do not tell Stan that, OK). We miss you so baby.... Take care of Sissy if she is coming to see you.

Love Grandma

---

Friday, June 11, 2004 (Julie writes)

Christy is a litte better. Chris and I have "THE COLD" and today is the last day of school this year. What a year this has been. We have company comming so I must go clean sick of not. That is a good thing. It needed to be done.

I am putting his letter on his web page so I can copy and keep. I also thougth some of you might like to read or keep it. THANK YOU, JENNIFER


This is something I originally wrote for Noah's family, but I think it expresses what all of us are feeling as we go through the phases of grief. As time passes, some feelings change, some go away, and some simply develop further. However, the one thing that never changes is the fact that we think of our kids constantly. So, I thought maybe this would help you with the feelings you're having. Here Goes:

When the lights finally go down for the night, the television is off and all is quiet...we think of our children who have gone before us. We wonder why they have gone, and when we will see them, hold them, smell them and kiss them once more.

When the sun comes up, and the day is new...we think of our children who have gone before us. We wonder if it is them that makes the day so sweet, the sun so bright and the butterflies fly. We talk to them, remind them of our eternal love, and send them kisses, wishes and dreams up to their high home.

When the day gets long, and traffic is thick, that song comes on and we think of our children who have gone before us. Those memories come flooding back, of pumps that beep, monitors that alarm and big doors that close behind us. It is painful to remember, but more painful to forget.

This was posted in his journal. I thought it was worth keeping and reading for everyone.

Christy is just a little better. I guess that is good! Chris and I have "


What is most important through these days is NEVER to forget the love we felt when all those things happened. God handed us something more precious than those noises, pains and fears...he handed us life. He did not send a warranty package, a return policy or an owner's manual. They did not come with an expiration date....

If they would have, would we have taken them?

I know I would have. Reluctantly at first I am sure, but my son was worth one minute with him on earth.

Just remember when the days get long, and the nights longer...and you feel as though God has left you there to die...He is there, and so is Maxie -- They will both hold you, love you, and lead you where you need to go.



Jennifer Naeger www. caringbridge.org/mo/butterflyty

---

Monday, June 7, 2004 (Julie writes)

I have a question for those of you who have lost children. Maxie is starting to feel like a dream to me. Like he was not real! That the last year was a nightmare. I am not trying to sound dramatic but I did not feel like this with Stan. Matter of fact, I still do not feel like that with Stan! Is this normal?

I do not know if it is my meds, or age, wisdom, or the short time he was in our lives. Christy and I were both talking about it and she feels the same too! Is it because of watching them die? Is it like labor pains and you so soon forget and block out the pain? I do not want to forget one-second of his life!

Christy is having such a hard time and is spinning down. Her meds seem to be helping some but the stress in this house is so thick you can cut it with a knife. Chris is not feeling well. You must understand, this is a man that never misses work, sick or well. Christy even grabbed him tonight and cried that she was worried about him. Of course the age old money... with Christy not working still. Robert is on the top of our thoughts most of the time. The puppies and still no AKC papers to register Missy from the famous "MAKE A WISH" people. (At around $600 a puppy she can pay for the carpet she is messing up still!) SOL test this week... then school is out for the summer. Stress, stress, stress.. and me... OLD, TIRED, AND GROUCHY ME... ! I am having a small cold that Christy and Robert gave me. Maybe that is what is wrong with Chris..a cold, but I think it is his sugar...

One of Maxie's favorite teachers lost a daughter a few months ago. Maxie was in the hospital at the time and that is how she found out that Maxie had cancer.. Christy told me that they sold their house and moved this week. I so understand! I remember when Stan died, we did that...WE MOVED!

You want to know a strange story about that? As I made the last run through that empty house, I told Stan we were moving to come on, follow us! I found out later that my Mom and Chris had done the same. (He did by the way!) Anyway, I later regretted moving. I wanted to be where Stan had been. Where he had lived! I told Christy we would move now if she wanted to or needed to but right now I am very comfortable with my memories of Maxie here. I was also told back then, not to make any major moves or changes in my life for at least a year after Stan's death. I am sure we should not do that now either. Robert needs stability also.

Please write and tell us more how your are feeling or felt . Please!

I have been ask again when is Roberts's birthday. Not till Oct. 26, will he be 10. Friday at the doctor he was over 57 inches tall.. WOW. What does he like? Right now it is just kids to play with! He does not want to be alone any waking minute (or asleep). Almost follows you to the bathroom like the puppies.. Send him a dollar... he likes to get money in the mail... I am trying to teach him to save so he can buy bigger toys...LOL I have not even learned that yet! He wanted a credit card the other day. I told him I would pay him $1 to put up the clean dishes everyday. He wanted $2. So I said "NO", a $1 or nothing and you will still put up the dishes... HELP! DR, PHIL! Guess who put them up, ME!

Maxie we miss you so! I watched Lord of the Rings II with Robert and I cried. It made me think of you! Poor Robert, he just sat and looked at me!

I love you more!
Grandma

---

Saturday, June 5, 2004 (Christy writes)

It's me again Christy. Now that I am still home I feel I should vent.
Things are not better but they are not worse!

I need to get out of the house and do grown up stuff. But I am nervous about leaving Robert, plus how much company would I be? Probably not good, huh? I miss work as far as the people I work with, but not the hot store and BS that goes with any job. That I am not missing! I need to go back and do work like I was doing before like for the county or work at Auto Zone and go to school and to work with hospices. I have a new drive and feeling for that for some reason!
I am going to check into that while I am off.

My doctor put me off work until she feels I am ready to return. I will know more after I talk to the Clinical Social Worker. I was taking my new prescriptions to our new drive thru pharmacy and I told that lady she must think I an a nut! Birth Control Pills, Sleeping Pills, Paxil, and Robert's ant-biotic.
She was probably thinking "local nut job". I wanted to say
"Just wait till you meet my Mom" (ha ha ha ha).

I want to say "THANK YOU" to some people that sent me their email address and sensed we are not at the end of our struggle: Don L Simpson Family, Sheila & my pretty girl Shawntae, Brandi Nelson, Dana Newby, Sharon Short, Judy Martin, Donna Sitnik, Shannon Sanford, Patrici Valdes, Mary Jane Zeh, Brenda K. Renfroe, The Biddison Family, Meosha Smith, Mr. & Mrs. Billy Bob Wilson, Rachel Strickland, Mrs. Winnonia Martz, The Moore Family, Pet Plus (Al & Lisa), The Davideit Family, Anthony J. Vallese, Janet Vallese, Lucy Emerson, Dorothy Pye, Kelly Mc Alister, Gee Jay Clark, Robert Green, Paul Smith, Audrey Riggs, The Culley Family, The Barnard Family, Linda K. Bowman, The Dearmon Family, Spring Run Elem, Amelia County Schools, Dorsey Drawhourne, Dunna Hull, The Fiveash Family, Orveta DeLeon, Juliana Koss, JP Martin, Jamie Tomkins, Jason Vasquez, Roberta Rigdon, Tracey, Audrey Riggs, Tina Newell, Keisha Gilliam, John Kennedy, Ticia Edwards, Mike Edwards, Moore Cadillac, Hair Cuttery, The Gragg Family, OUTKAST, Emily, Sue Regas, Sheryl Stephens, Italy County Schools, Linda Da Re, Rachel Merrick, Chuck and Lene' Haney, Grosclaude Family, The Poore Family, DR & Mrs. Asbury, Jr. ( my uncle), The Security Gaurds at MCV who made us smile. The nurses: Barbara, Angela, Cabble, Michelle, Valarie, Dawn, Shelly, Tawana, Cassandra, Stephanie, Missy, Robyn, Anne, Elizabeth, Debbie and everyone at the clinic and also Matt. There are so many more. If I have forgotten you I am sorry.
To the teachers at his school they have treated us graciously and with kind hearts.
I sure am glad "THIS" is where we were more like family.

Goodnight to all.

Maxie, Momma is cleaning out her room filing papers and only crying a little. Wish you were here to lay on my bed and watch me. Then I could go in the bathroom and talk to you while your soaking in the tub. Robert wishes you were here to watch Lord of the Rings II with him. I hate those movies!
Hey Maxie..

LOVE,
Christy (Momma)

---

Tuesday, June 1, 2004 (Christy writes)

It's me Christy...

I have many bad days the last few. I called his nurse Michelle last night just to hear her voice. I miss his nurses so much. They were a part of my life so much this year. I would walk around the corner to check in and say, "Honey I'm Home!" I felt so good when I would see Barbara or Cable there, but Maxie only was looking for his woman, Angela. I have good memories of the nurses at MCV!
They treated me so good and supported us so well.

I wish I could throw them a big party to say thanks for taking care and showing him they cared about him while he was in pain. He would ask if Barbara was working if it was a bad day. He trusted her so much! I miss her a lot and think about all of them every single day.

I watched a video today that my angel Rebecca had taped of Maxie, a week before his death. He was smiling and ordering stuff on ebay for Robert. He was smiling and playing. I love him so much and my heart is hurting! How do people get through this? I think of Robert and know that I need to regroup for him. I can understand why people feel like they want to die too. Its because you think you can be with them and the pain will stop.

This past year with Maxie was so hard on me emotionally. We had bonded so much. We had not done that in the beginning, he did that with my Mom, so we made up for lost time. Sleeping with him every night and holding him when he would hurt. Giving him meds he hated. Then I think about Amber too. How must she feel? I mean 5th grade, no closure and that is your best friend and boyfriend is gone??? I want to call her and tell her thank you for the special moments she gave us. He loved school because of her! He was so social and loved being with people at school.

I just miss him!!!! I want to smell him and kiss his head. We would hold hands a lot in the car and I would rub his hands. They looked like mine and my dads before he lost the weight. I would say don't go to sleep, when we would have to go to clinic in the mornings. I wanted him to stay awake and sing.

When I wrecked my car I remember him saying that sounds like a can opener! I cried about my car and he just patted my hand. He knew I was silly about my car. Then he told everyone at the clinic, I cried and cried! He thought it was so funny! Of course I didn't, but now that I look back I think it was. Some of the things that made me mad then make me laugh now.
I think the pain is unbearable, and I hope it gets better.

Everyone hug and kiss their kids.
Give your great nurses the words to let them know how important they are to you.

MAXIE! Momma loves you and wishes you were here. I think of you all the time and wish you could help me get through this. DO they have collect calls in heaven? I am gonna get swimming lessons for Robert. What do you think? I know he will miss you this summer. "Hey Maxie"

Christy (momma)

---

Monday, May 31, 2004 (Julie writes, crying)

Well, we had another booooooooring weekend. I did dig out Roberts and Maxie's tent they got for Christmas and Robert and I put it up. He and Scott
(a friend down the street) had so much fun all weekend in it.

Christy is still so very depressed. She has a bad cold too, so that does not help! I do not know what else to do to help her! I cried today feeling sorry for myself, for the bad life I gave her. I often wish now I had never had children. Maybe God should have gave them to someone else. I feel like I have lost 3 babies, Stan, Maxie and now Christy. I am crying so hard. I mostly feel for Robert. How do I explain we are just going to skip the next couple of years of his life, because we are sad? That kid is not going to have a chance in life. No father, being mixed, lost his brother, a Grandfather that is just so tired and gruff, a Grandmother with Lupus-Fibromyalgia and that has fought depression all her life (and right now is loosing). Last but not least, a Mother that had decided to just stop living.

I heard Dr. Phill tell some lady that the amount we grieve has nothing to do with the amount you loved. How true that statement is! I think a lot of us grieve not so much for ourselves but to show others how much we loved the one that is gone. The attention some of us get is like a drug. I think the parents of cancer kids it might be even worse. For a long time we were the middle of attention of so many. Our familles, friends, maybe our town, the doctors, nurses and many more. All of a sudden a few weeks after, it all stops, just STOPS. Now we are alone, hurting, sad and not in the center of the storm.
I include myself in this statement...

Do we think if we laugh or go out is someone keeping score and saying "They did not love their child very much did they?" Is Gods score keeper counting our tears? Do we get points for each of them we shed? The worse thought is what if our children are watching? Maxie did not want to leave us... and I think he knew we were going to cry and miss him and he did not want that.
What if he is watching us now?

Well, I am crying so hard, am getting my keys wet....

Maxie I miss you so....
Grandma Julie

---

Friday, May 28, 2004 10:33 AM CDT

I wrote this today for Markie's Mom who is hurting too.

Theresa... I have some advice for you... (Don't you just love getting advice? I love giving it! I have now walked your steps with my son Stan and now my Grandson Maxie.. so I have found that with age I have gained some small wisdom... Here goes...

Tell you friends that you just had a bad, very bad car wreak. You broke every bone in your body. You strained and pulled every muscle. You were in a coma for weeks and weeks. The worse part, you broke your heart!

You are just now waking up and it hurts so bad you wish you were still asleep. You hurt from head to toe.. Most of your memory is gone except the pain and you cannot stand the pain. Your doctor and friends tell you that your bones will heal in a couple of years. Your muscles will need support and therapy but will get strong again in time. Your mind might not ever be the same but will be almost normal after a long while. But your heart, oh your heart will never completely heal. It will always have a giant scar and a big whole in it.

Some days when you think you are almost well you will hear a baby cry, or a bird sing, or a certain song. You will smell that smell or just think that thought or remembor that memory that you had buried deep away and your heart will hurt again. Oh, it will hurt almost like the day you had the wreak.

Now, tell them this or print it and hand it to them and say "Thank you for your advice and support."
If they do not understand they are not your true friends.

Christy and I and others to, that have lost a child do understand. I wish we could all just hold each other for a year or two and cry and cuddle while we slowly heal. We are here if you need us..

We really are...
Julie & Christy
Maxie's family
caringbridge.org/va/maxie

---

Wednesday, May 26, 2004 (Julie writes)

*****Shawntae Smith*****

Remember the little girl in Maxie's 5th grade class, that I told you about a few months ago... they found a match for a bone marrow donor.... That is great! Yesterday I had to go to the store and I ran into a neighbor that lives on our little street. She has 3 little boys and Robert sometimes plays at her house. She is a teacher at Maxie's school. Anyway, she had a funny look and ask me if I had heard about Shawntae? I said yes.. about the donor match..? "No, she is in the hospital with an infection and it is not looking good!"

As soon as I got home I told Christy and she called her Mom's cell phone. Yes, she is in the hospital with an infection, just like Maxie's! Her lungs are filling with fluid and around her heart. Chills went right through me...I felt that sick feeling in my stomach! I have thought about her all night and I am scared for them...(crying)

She said no one wanted to tell us Shawntae was in the hospital because it might upset us. "We stay upset". We would rather think about Shawntae and pray for her than keep kicking ourselves about Maxie. I told Chris and Christy that I was worried about their 5th grade class! I went my about 25 years before I ever lost a kid I knew in school. I cannot imagine what the kids at school are thinking with Maxie passing and now Shawntae so sick. They also have a 5th grade teacher this year that has cancer! They must worry and be scared. What a 5th grade year they are having!

A prayer for Shawntae:

Maxie, I know your are already watching over Shawntae and her Mom but if something happens.. will you please be the first person Shawntae meets at the Golden Gate. She will be scared like your were and she will need to see your beautiful face. If you have any pull up there, can you whisper in Gods ear, please tell him to take care of this beautiful girl and her family. Please have Gods angels wrap their arms around her Mom and Grandma they will need them to hold them up.

I love and miss you...

PS.. Can you whisper in your Moms ear that she did everything right and your are so happy now not to not be sick and hurting. That you will see us all soon and to please try to laugh and be as happy as she can be while on earth.
Watch over Robert... Give Stan and hug...
"I LOVE YOU MORE"

GRANDMA JULIE

---

Sunday, May 23, 2004 (Julie writes)

I hate weekends. The boys should be here playing together. Robert is so bored and alone. I am so thankful there are three boys about his age on our little street. I think they all thought Maxie was the coolest. I guess he was the oldest. (KING OF KNOBS HILL LANE). I know he protected little Robert, so now when he gets picked on I do not think he knows what to do.
He never had to before!

First you are the second child, the baby, shy and bashful. Then all of a sudden you are the only child. You have always, since the day you were born had a big brother. He was one that loved you and protected you like brothers should. Stan was that way with Christy and Maxie was always that way with Robert. I do not know how to teach him to be an only child. He has no father to guide him. Chris is really to old and tired. He is a great Grandfather! He has loved the boys just like they were his own. They have never done without and he has always been there. He is just very tired.

I am not looking forward to summer and no school. Robert and I are going on a trip to N. Carolina to visit one of Maxie's Chemo Angels and that should be great! WE HAD, NO WE HAVE 2 GREAT CHEMO ANGELS If I had the nerve and money I would drive to Texas with him. I am very homesick. Gas is so high now and I do not think Christy could handle being without Robert that long right now.

It is getting very hot now.. so no more outside for me except very early and very late. With all the insects not much of that either. I need a Purple Martin house or a cave of bats. Maybe some Genie hens for the ticks...

I miss Maxie so very much. He was almost my whole reason for living. Every fiber in me hurts. I have never in my life so totally loved one thing that much. I still am going through the very angry, mad, what else could I have done and blame myself and everyone stage. I find myself pulling away from the rest of my family. I wonder if that is normal? I guess I did that after Stan died but I was so busy working I did not notice. It is like if I do not love so much when I loose anymore, I will not hurt so bad. I keep feeling like I am the only person this has happen too. How strange that is because now I know just how may children die from cancer.

Our only other strange problem is all the grieving in one house. After Stan died.. most of my family and friends were my support. Now I need to grieve again and no time or place. I have to support Christy in her grief and try hard to do the right things to help Robert. It is almost like I am putting it off so I can do it later. I never was afraid of the future but I am now.

I am so glad you guys are still here...
Maxie I love you...
Julie

---

Friday, May 21, 2004 (Julie writes)

HERE IS A NEW CARINGBRIDGE CHILD THAT NEEDS OUR COMPANY AND SUPPORT!
caringbridge.org/me/lexie/
PLEASE GO READ AND SIGN HER PAGE...

What a day!

Why can you go along just fine and then fall apart one day for no reason? Christy and I both had very bad days yesterday. First my roof was almost finished and I have panic attacks writing any check over $100... I just cannot stand letting go of money anymore. Even if the insurance paid most of it.. I do not know if that is age or what.

Then not long after Christy went to work she called me crying and mad as hell. She has been doing the assistants manager job for almost 3 years at her Autozone for just normal small, very small pay. That store did not run enough for an assistant she had been told. She even trained guys that moved on up. (Reminds me of my days at Albertsons). Anyway, yesterday she was told that they were bringing in a new Assistant Manager. She freaked out... They did not offer it to her. They did not even ask her if she could handle 50 hours a week so soon after Maxie died. She and I know the real reason... She does not have the right male autonomy... She is not X military.... She is a white woman... She is a woman in a mans world of car parts. The first week Maxie was in the hospital she worked 80 hours and stayed with Maxie when not at work. She worked almost full time for months and months till he got so he was in the hospital more than out. Now... she wished she had not worked any, so she could have spent every precious minute with Maxie. What did it get her? What points did it make her?

Now me... I guess the money and Christy being upset just got to me.. I went in to change Robert's sheets on the boys bunk beds. All of a sudden it just hit me... I was only changing the bottom bunk. The top is covered with moose and stuffed animals. I did not have to change both sheets! I started crying so hard... There I was trying to get Robert to bed and I am crying. Then I started throwing up! Poor Robert just tried to pretend he did not see or hear me.. I took a xanax and up it came too... Chris held me while I cried more. I tried to lay down and back to the bathroom I went. Now nothing to come up, I am just heaving.

Finally I calmed down. Robert came in my room, got on the bed and ask me if he could show me his new book of cars he had bought at school today. He was reading me every little thing about each car. I told him to go get his Granddaddy and we all sat and talked about cars, horsepower, turbos, engines and prices. I finally told him he had to go to bed... It was almost 11. I know he was trying to wait up for his Mother...

He was so hard to get up this morning! I finally bribed him by saying I would drive him to school instead of him taking the bus. So here I sit... I wonder what today will bring. What a day, what a week, what a year and what a life. Oprah and Dr. Phill would not even believe me.

Maxie I miss you so...
Grandma...

---

Wednesday, May 19, 2004 (JULIE WRITES)

I have 2 new pet peeves, and I am sure you want to know them.

First, the siblings that are left behind. Poor Robert, he has been so great. He is still on the high honor roll again! His Mom is working and he is very lonesome. Tired old Grandma is not much fun. He is always trying to get me to sit and watch him play his games. At first they reminded me so much of Maxie even the music made me cry. Now, I fall asleep almost as soon as he turns them on. If I get up and try to leave the room, he ask where I am going? The point I was getting to is the kids that are left behind have been put to the back burner for months maybe years. Not the center of attention! We talked about trips and camps that they would go on when Maxie felt better. Now we just sleep or cry. What happen to the trip he wanted to know? It hit me, he thinks we are still going! Do they wonder why they are not important enough to rate a trip to New York or Disney? If I won the lottery I would set up a trust just for them. I would let them have a wish. It is just a thought!

Now my second peeve....

If they are trying so hard to find the cure for cancer, if they are trying to find the cure for Rabdo why has no one called us and ask us 100 questions, no 1000 questions about Maxie.

Example:

Was he breast feed?
Did his Mom or Dad do drugs and what kind?
Did his Mom drink or smoke? Second had smoke? Did Grandparents smoke?
Did they live where a factory or refinery was, that dumped junk for years and years?
Did they live in a house with mold?
What shots or meds have they taken?
Detailed family historys.

I could go on forever. There has to be a connection. I think the junk we eat and breath has the biggest effect on the children being born and raised now. My point,

NO ONE ASK!

They shoud have a big computer just filled with historys of all the cancer kids... NO, all the cancer people. There is a connection, I know it...

Well, I feel much better! I vented and got that off my chest. My lupus is bad right now, to much sun. I have been trying to work in the yard some. I know better but miss outside so much. Christy is off today and the roofers are on my roof banging away. It is looking great! My house is red brick with an ugly mustard yellow trim and green shutters. The roof before was a cheap light gray? I picked a dark green dimentional 30 year shingle. I wanted the 40 year shaded one but it would be about a $1000 more so nix that. The dark green even made the yellow look better! My neighbor Brian, the roofer, decided yesterday the owner had used old VDOT paint. Every room in my house is yellow also, except one bath that is 1970's blue. I guess during the summer while the sun is so bright I better paint some and forget the yard. I have to keep moving or my lupus fibromyalgia will take over.

Have a great day! One day at a time, one step at a time. You can not change the past but we can change the future. ROBERT, WE LOVE YOU TOO!

(MAXIE, do not tell, but I love you more.)
Grandma Julie

---

Tuesday, May 18, 2004 (Jennifer Naeger, writes)

I have copy, pasted and printed a lot of your post to put in Maxie's journal but for some reason I think you should all read this one... It really just hit me this morning when I read it... As for me... you have became my small world... Julie
Thank you Jennifer

I have often said that after the illness and death of a child, things are never the same. The hospital world becomes "normal", and we become "comfortable" with the horrific things our kids experience.

When the leave us, we are left so alone, and the world has seemingly just gone on without us. Before, we were too busy to really notice, but now, all at once, so alone and scared....we suddenly realize that the train has left the station, and is now traveling at full speed---just whizzing by us....and it is as though we're expected to just KNOW how to jump back on.

It's important to remember, though, that not all of us have gone on without you. There are some of us out here, most here in caringbridge, that HAVE slowed down to wait for you. True, we may never meet face to face. However, because we have met heart to heart, we have become so attached to you...we could never leave you behind.
Though not the same pair, we have walked in similar shoes, and we know how uncomfortable they can be. The blisters just never seem to heal as we stumble around like toddlers learning to walk....just wishing someone could stop time and bring our babies back.

So, my dear friends, know that I am right here, willing to walk beside you, no matter how slow the pace. And though you may not see me if you look out your window in the morning, even though I cannot sit and have coffee with you in my jammies--If you could look inside my heart, you would see your reflection, along with Maxie's beautiful face. For he, and you, Christy and Julie, have etched yourselves in my heart...

Next time you encounter someone who has the luxury of fretting over such petty things, tell them Maxie's story. He was sent here to change lives, Christy, and you can help him do that. Share his story with all who will listen, and even those who don't really want to (those are probably the ones who need it the most). Everytime you share his story, you pass his legacy on, and remind yourself and all those around you that he did not die in vain.

As for all your friends and coworkers, they are just scared to hurt you. I lost a lot of friends when I lost Ty, but those were friends worth losing, I suppose. The real friends will not leave you, though they may struggle to find words sometimes...And those of us here in caringbridge will never leave your side, either. You're stuck with us now!

Jennifer Naeger www.caringbridge.org/mo/butterflyty

---

Saturday, May 15, 2004 ** * (Christy writes)***

Hello everyone, I know I don't write much lately so I figured I would so everyone knows how I am doing. The last few weeks that I have been back at work are so hard. My body is so tired, and I am not sleeping. Last night I lay in bed and listened to Robert breath. I started to cry thinking of Maxie. I just kept thinking, I want one more chance at being his mom. Why am I being punished? I thought of how many times he actually cried from pain or being scared and it wasn't too many. He was so brave and strong and just dealt with what God had put on his plate, but I am mad!!!

I had a customer last night that was mad about a warranty and didn't understand it. I got fed up and walked away instead of my old way of getting smart. My boss Robert cleared it up and the guy kept looking at me and giving me a look of anger. I wanted to say you are the least of my worries! I am so sad inside and he is mad about $3! Now when people yell at their kids I want to yell and say, try being without them! See how painful that is to deal with! Some people walk on eggshells not wanting to talk about it. Some people are treating me different like being overly nice to me. If they only knew how hard it is to get up everyday without him and drive home without him.

My heart aches with pain and my mind is wheeling from thoughts of him. My mom so understands and she comforts me even though she is going through her own grief. Robert pats me and smiles and kisses me. People at work are good. My friend, Keisha is the best thing for me, and she makes me happy. My boss Robert tries to treat me normal and yet not stress me out. My ex boyfriend is trying to be there and check on me and listen when I cry. All the other people just shut me out about Maxie. They don't know what to say or how to say it.
I guess I understand....

I miss him and wish everyone who reads this page knew how awesome he was. He never said a negative word about anyone and always worrying about everyone but himself. I remember him rubbing me. When I cry from bills or homesick or scared he would rub me! My face is so wet my eyes are filled with tears of sadness and joy for my son. I can't believe life has to go on without him. My life feels likes it is in slow motion. Why can't everyone else slow down with me! It should be a holiday my sons birthday! Why?!! I want him to come home and I want to cook for him and lay in bed and watch TV. I want to teach him how to drive! I could go on and on. My face is swollen from crying and I have to work today. I must go....

I miss you so much my heart will never mend from the emptiness that it has from you not being here beside me. I just want one more chance!!!!!!

Love your so!
Your so sad, so lonely and so mad mom!

---

Friday, May 14, 2004

I am so tired....Chris was off yesterday. I grit my teeth and ask if he wanted to take a ride and go to the mountains. We went and took Robert out of school around 1 PM and packed a lunch and off we went. We headed north west, staying off all main roads we could.

I can only stay one good thing about only having one child.. Only one ... they do not fight in a car. Robert was great most of the day. He could not wait till he saw the first mountain tops. We saw 7 different rivers and so many little streams we lost count. We had been down the Sky Line drive in most of Virginia long ago so this time it was other roads.

I wanted to see Hot Springs, VA. We ate lunch about half way in a very nice road side park next to a nice river. Robert just loved it. He saw a water snake and watched it a long time. Some people were already swimming up stream a way. It looked so fun.

We talked a few times about Maxie but both had to choke back tears so did not talk to long. I said I had no idea I would live one day of my live without my son. I had no idea I would have ever out lived Maxie. I use to lay in my big king size, bed between the boys so they would take a nap. When Robert fell asleep I would cuddle Maxie and always tell him that Robert was so shy that I wanted him to always take care of little Robert. (crying) Maxie was so big and strong, smart and beautiful. They were like the sun and the moon, a reflection of each other, and one could not do without the other. They loved each other so much.

I have been surprised how strong Robert has been since Maxie got sick. The first day Maxie came home from the hospital ... with is billiruben bag hanging out, he was to sore to walk, to the bathroom. Robert would help him hold his urinal or carry his bag while Maxie tried to climb the stairs to his Moms room.. Maxie was not ashamed to have him help and Robert never even thought not too.

Well, back to the trip. Hot Springs... what a resort... I think the movie "Somewhere in Time" was filmed there. I think Robert Duvuall lives there too. It was like a picture. Almost the biggest hotel I have even seen. Oh, if I were only rich, I would spend a week there taking long hot spring baths and room service. We then drove on north to then turn and start home. Virginia is so beautiful up in the hills and mountains. I saw two towns I would move to tomorrow. On the way home we stopped for a short rest at a roadside stop that had trails built during the civil war. Robert wanted so bad to hike. I am to old and tired and it was getting late. We read the sign and all got drinks out of the back and started the long drive home. The clouds were below us. The views were just breathtaking.

Robert of course did not fall asleep till we were almost home. He went straight to bed. Later I went upstairs to check on him and he was still awake. I think he was waiting for him Mom to get home from work. A few minutes later she walked in...She check on Robert who had now just closed his eyes and came back down stairs and cried. I thought she was crying about Maxie but no... She was so sore. Her legs were hurting so bad. Nine months of doing nothing and then now standing on her legs again. Autozone's store is having air conditioner problems and it was inventory day. Everyone was on edge. Poor baby, so tired and crushed looking. I gave her 3 Advil and a codeine pill and off to bed she went. I went up soon after and here she came into my big bed.

We miss Maxie. We both spent so much time with him in our beds the last 8 months of his life. Even at the hospital I would crawl up next to him and cuddle. At the end when he did not want to be touch much he would tell me to climb up and put my head at the foot of the bed. I would lay there rubbing his sore legs till we both fell asleep.

Maxie I miss you so... Maxie I love you so...

---

Tuesday, May 11, 2004 1:12 PM CDT

I am alone... all alone. Good thing because I have been working on my computer for 2 days. I had to do a full restore and lost everything. It is a good thing I put all my pictures on floppys a few weeks ago. It take forever to do updates and download things you use. Gee, what a mess.

Chris and Christy both working early normal hours.. I think Robert and I might go to the store when he gets home. I do not think I have been since Maxie died... I just did not want to see people and I am mad they are out acting like nothing happen... Strange!

We are fine.. on day at a time.

Maxie I miss you so...
Grandma Julie

ps... how do I put links... in here?

---

Monday, May 10, 2004

How was your Mother's Day? Mine was about the same as most Sundays. Chris had to work and Christy cooked supper. Robert played with the kids down the street most of the day.

I think this is the last week of Christy working part time. That is good! She needs the work to keep her busy and the money to pay bills. She said everyone is being very nice to her and she had a so many people ask her to go eat lunch for Mother's day. That was nice of them.

I missed up my computer or got that bug so am spending the day trying to get everything updated again and still looking for my checkbook? I know it is in there but cannot find it...LOL Oh well, no money any way!

A got a few Emails about what happen to the people that kidnapped and raped Christy when she was 10. I told them they had to buy my book someday. (Joking) That is another long story ... gee ... my book is going to be so long...

Five years later we had a phone call saying the police wanted to stop buy before school to show Christy some pictures. About 5 minutes later the door bell rang. The detective that worked the case was standing at our door. We now had moved over 500 miles away so I was kind of shocked. He put down on a table a few pictures of men. Now, remember Christy was 10 when all of that happen, she was now 15 or 16! She walked right over and touched a picture and said..."THAT IS HIM!"

They said yes.. and smiled at each other. She signed some papers and away they went. It was all so quick. I guess they had to call and have him picked up or something.

They called a few days later and sent us to talk to someone about what it would be like going to court. The lady informed us that the time limit was up for charging him with rape. In Texas at that time it was 2 years. I think it is 5 now. That is so stupid! Like rape is not forever! Something about him not taking her across state lines meant they could not charge him with kidnapping! So, what was left was assault. I ask if he would go to to prison for assault and how long? The woman said "NO", he would most likely get time served in the county jail and be released that day. He would walk out of court 5 minutes after we did. He would now know where we live now and what she looked like now. Christy did not want to go court and tell everything again and him not go to prison.

On the way home, I told her I agreed with her and understood. She told me she had always believed that Chris (her Dad) had been involved until now... I was in shock!! I could not even think about that she must have gone through while I worked for years mostly evenings. I replayed almost every memory I could think of. When Chris got home that night we told him what she had thought, and we all cried. He was so upset. I think it hurt him so bad he never will get over it. I think that damaged her more than the rape itself..... a dumb lie...

The woman involved must have made a deal to turn the guy in. They did not want us to charge her at all. I wanted to kill both of them. They would not tell us their names or where they lived. It was later that Christy said she saw his name on the papers she signed. Stan and his friends wanted to go find him and kill him.

The detective told me later that he served 3 months in jail waiting for the paper work and us to decide not go to court. He would have most likely have got time served, just like the lady said for assault. He told me they could not tell me they let him out "THAT" day and he might go to prison for some tax things. He would make sure that if he did, the whole prison would know he was a child molester, guards and prisoners. He also told me what town he lived in now! There was not an Internet back then, and I guess I am glad. I am sure Chris, Stan and their friends would have gone and found the guy. A local very bad motor cycle gang also told us they would take care of him if he was ever caught.

It change all of our lives. It changed Christy forever. I have had post-traumatic stress symptoms from then on. For years and years when we even talked about it I would shake inside and feel sick to my stomach. We had great support when it happen and lots of good advice on how to handle things. Hindsight is always better but I think we did most things right. MOST!

We were told Christy would most likely never get pregnant but she did. She had Maxie and Robert. I always knew I would have at least 4 Grandchildren, and now I have just Robert. What a load that baby has to carry ... so much love.

Well, my next set of updates is ready ... so better go... Please keep in touch, you have become my support and family... Julie

---

HAPPY MOTHER'S DAY WEEKEND

*******PLEASE READ THIS TO YOUR CHILDREN*******

A lot of you have ask about Christy's rape when she was a child. If Maxie dying of cancer has caused me to write, and if my writting saves one child, then this might be my reason to have lived this life.
This is part of that story.

It was the first day of school somewhere in Texas... and Christy was just 10 years old. She did not want to walk the short block to school and had cried that morning. I told her as soon as she got out the door she would see other kids in her class walking too and her brother, Stan, who was 15 would walk with her. Off they went and I went back to bed. I worked 3 to 12 at Albertsons grocery store most of the time. That day she had a dentist appointment at 1 PM, so I picked her up at school early that day.

Off we went to the dentist to get 2 teeth filled so she could have brand new braces put on the next day. It was her first shot she ever had in her mouth so again she cried a little. Things went smooth and she went to sleep in the car on the way home. She went right in and went to sleep on the couch. I told her I was leaving and Stan would be home in a just a little while.
Off to work I went.

A few hours later between 6 and 7 PM, Chris, my husband, called and ask me if I had told Christy that she could go visit someone after school. I said no, not on a school night and that she was most likely out riding her bike with her dog Chewy, in the basket on her bike. She had just taught Chewy to do that and they went every where together. I worked a few more minutes and then looked outside. It was getting almost dark so I called back to my house. A neighbor answered. That kind of startled me! She said everyone was out looking for Christy and had been for a long time. That Chris had not wanted to scare me! ***** NOW I WAS SCARED! *******

I told them to go look in the pool and the empty apartments. They already had! I told her to have Chris call me back. Time went by so fast. I called the security guard at the store who was a cop in our town. He then called the station and told them this was no joke, it was serious.

I had to call my boss and get someone to come in and take my place. That sounds so strange now! When I got home, the whole area was covered with police cars and people with flashlights. As soon as I got out they started to question me. What did she have on? Did she cry today? Did I whip her today? Where was her "real" father. (He was standing right beside the police man.) Would she run away? Was she happy? Where was the dog? Where was her bike? I was going nuts! I wanted to be out looking not talking to some cop who thought I had hurt my baby or that thought my baby had run away!

It is now around midnight. The phone rings and I answer. Cops all around telling me that it might be a kidnapper calling. It was Christy. She was so calm. "Mom, he did "IT" to me!!!!" I ask where she was, and she told me Sambos. I turned to tell Chris and the police but before I even said the words the cops were gone, to the wrong Sambos. The policeman that was still standing with us, told me to tell her a policeman would pick her up and take her to the hospital. The manager of Sambos then took the phone and told me he thought she was hurt because she was bleeding all over the curb where she had been sitting outside with the dog! He also said, I feed the dog!

She was hurt! She had been raped, sodomized and ripped all the way up inside. The doctor had to call in a surgeon that did female things. To keep this short and not to gory I will tell you how she got kidnapped.

Christy decided to take her dog up to 7-11 after school so the other kids could see her. A woman ask her if she had seen a lost dog? Christy said no but would watch for one on the way home. On the way she found some dumb dog and took it back to the store. The lady then offered her a ride home since the dog was not hers and wanted to thank her for walking all the way back to the store. I had never told Christy to be afraid of a woman. She also told her she knew her Dad so Christy thought she was OK. They then drove behind the store and picked up a man. The lady told Christy the man was her brother and had been out looking for the dog. That was around 4 PM in broad daylight on a very busy street and a very busy little store.

The man and the woman told her they knew her Dad, and he knew where she was. They even faked a phone call to him! They went all the way to another town and checked into a motel. They feed her and the dog, then told her to shower and get ready for bed... and then...

The woman took pictures.. he had a knife, Christy had rope burns on her arms and ankles. Why they did not kill her. Why they drove back to our town and drop her off at Sambos I will never know. Why God let her live then to then take her brother a few years later and then take Maxie with cancer I will also never know. If you have Gods ear, please tell him we have been though enough already.

Please tell your children, boys and girls this does really happen. That woman can be bad too. Act out what to do. Have them learn never play alone. To scream and yell as loud and they can and RUN, PLEASE RUN.

Julie, Maxie's Grandmother
Christy's Mother
Happy Mothers Day

---

Thursday, May 6, 2004 10:37 AM CDT

It has been a very hard week for me. I feel like the center of my universe is gone. Hard for me to think, write or do anything.
Start something and just stop.

Yesterday we had storm warnings and I started crying. I remembered last year, I had gone to the school and picked up Maxie and Robert because Maxie did not feel good..
STUPID ME, HE DID NOT FEEL GOOD.

We had the May 9th tornado that day. I was watching TV and talking on the computer with a friend of mine in Texas. The boys had gone up and taken a nap on my bed. The radar showed the storm was coming right at us. The clouds looked bad and scary. I went up and woke up the boys and told them to come outside and look. We stood on our drive-way and I was talking about the clouds and that I had seen like that back home in Texas.

Soon the electricity went out so no more TV to watch the radar but the last time I had checked it was coming our way. I told them to get the phone, not the cell phone the regular phone, (forgot, NO POWER) and flashlights. We then grabbed a big blanket and went downstairs in the den next to a brick wall
and hid behind a big love seat.

The wind started blowing and howling. The rain was coming down so hard you could not hear each other talk. I was crying. I told them I was sorry that I was not supposed to cry. It did not sound like a train but just the strong wind that shook the house. It lasted about 3 to 5 minutes that way.
Then it was just hard hard rain.

We got out from behind the love seat and looked out. The wind was blowing the rain straight across. I pick up the phone that we have that does not use electricity (everyone should still have just one) and called Chris and told him, "I think we are in a tornado, and we will be under the love seat if you want to ever find us!" He said are you all right and I said no.. I am crying and scarring the boys... I then called Christy but she did not act like she believed me or cared.(I was pissed.) The boys were great. They were just looking out the back door at the trees that had blown down across our street, while I was running in circles.

Yes, it had been a tornado that hit our county. It started a few miles north of us and then jumped and then landed on our house, then went about a mile and jumped a few more times. It then landed on our courthouse and little down town and just wiped it out. 300 year old trees, down like nothing. The school had been loading the kids to go home when they saw it comming and all went to the high school. The streets were blocked with down trees so the could not get the kids home and parents could not get to the school. I was so glad later I had both boys with me. Why I had picked up Robert that day also, when it was Maxie that did not feel good, I will never know? At our house we had no power for 5 days, others it was weeks. We lost all of our food and we were hot, dirty and grouchy. Most of our neighbors had or got a generator, we should have.. later during the hurricane we could have used it. More hindsight!

I look back now and am so mad at myself for not taking Maxie to the doctor the next day. He did not act like he was very sick except much but hindsight is so clear. Even at the end, he never showed pain much. He was so strong. I was crying yesterday because I now know he had cancer then and I just did not know it. I am so angry at myself. I am so angry at the doctors. I am mad at the world. Do not tell me that is normal and part of the grief process, I do not care.

It took a year to get a new (green) roof for my little house. Next week I will have that mess all over my yard. I will let you know how that goes. Flat tires I am sure...lol

Maxie, I love you more... forever********
Grandma Julie

---

Tuesday, May 4, 2004

HI... what a day we are having, No water! The pump for the well, we bought last December went out! I cannot do anything without water. It just drives me nuts. I had to drive to town and exchange the old pump for a new one and now I am waiting on the plumber to come back. I of course cried all the way back from town. I miss my baby so much!

Robert is down the street playing and Christy is in bed upstairs. It is very lonely here! Maxie was usually here playing games or watching funnies with me. It hurts so much, it is almost hard to breath. Your stomach feels upset and you ache all inside. You walk down the hall and look in his room and he is not there. When you go to bed you want to go kiss him good night but he is not there. When you wake up, you do not want too, because you know it will hurt.

Someone ask us for advice about their child with the same kind of cancer. I am so bitter, I do not think I can give very hopeful advice. With stage III or IV cancer, depending on where it is, I think they should just make the child as happy
and pain free as they can.

I know now, I would almost take Maxie and run and hide, go fishing sit and play any game he wanted..., talk for hours, even about funnies. Make memories... while you can. Our time ran out because we thought he had longer..

Think of today as his or hers last day on earth..

Julie
Maxie's Grandmother

---

Monday, May 3, 2004

I am going backwards in my mourning process! The more things get back to normal the more I miss Maxie. I am having nightmares almost every time I shut my eyes...

Christy worked a lot the last few days so was not home, but I do not think that was it! She is very sore but I am glad she is working. The weekends are very bad when the boys are not at school, and should be home and here all together.

Thursday when Christy went to work, Chris was off so we went to town to buy some trees. We went to Home Depot and got 3 Colorado Blue Spruce to plant in the front yard. After, I was very stressed and we stopped at Wendy's to get food to take home. Chris and Robert went in and I sat in the van crying. I called Christy to see how she was doing at work, her first day. She said she was doing pretty good. She said while she was stocking and went to the back to get something and looked up, on a shelf above her head and there was a "MOOSE", in a Autozone? It looked almost like MAGELL, Maxie's favorite moose. Strange, very strange and the other employees did not know where it came from? It made her cry... she said. About that time Chris and Robert had the food ready and we backed up to leave... I was still crying a little and looked up (I back-seat drive) and there was a big "MOOSE" on the back of a van, on the tire cover. I laughed... and stopped crying.

We planted the trees yesterday. I ask Robert if he was going to name them... How about "MOE, LARRY AND CURLY" for the Three Stooges. Stan use to watch them every morning before school, and Maxie loved them too. I also bought a second rose bush, now I have 2 for my rose garden that I am planning. I want 11 for the years Maxie lived on earth. I want one climbing up something, like going to heaven. That will be all I do at home in honor of Maxie. I do not want to make my house a shrine. That is not a good thing! The park or playground will be my project. I am going to start selling on Ebay again soon and going to keep adding to the Maxie fund, just for buying the trees.

I again want to take the time to thank the people of
"MAKE A CHILD SMILE" and "CHEMO ANGELS".
If you ever want to donate to something that helps supports the child with cancer or the family, please donate to them. I really do not know what we would have done without them the last few months. Thank You so much.

Maxie, I miss you so much!
Grandma Julie

---

Friday, April 30, 2004 6:55 AM CDT

ANGLEA PASSED HER NURSES TEST!

Angela,was Maxie's first real love of an "older" woman. She bonded with Maxie from day one at the hospital. He thought she was so beautiful. Until the very end, he would not even let her see him pee! When she would come to work or he would come into the hospital and they would see each other, they would run down the hall like a movie. Other nurses would come up and tell her, "MAXIE IS HERE, WAITING FOR YOU".

I know nurses are not supposed to get attached but we had some great nurses. Most cried when he cried. Most hurt when he hurt. They cried for us when they knew he was dying and some were with us when we turned the lung machine off, even thought he was in ICU and not on the floor. The ICU nurses said they had never had so many nurses call and check on a person before!

We still miss them and think about them all the time. Barbara and Angela became family. Angela, we are so proud of you! We never thought of you any different just because of a piece of paper. God put you in Maxie's life and we are honored.

Christy worked a long time yesterday. She said the long drive alone is the very bad part. I remember that when Stan died, I had about a 45 minute drive across Dallas to get home. I cried all the way for months. When I did get home Christy, Judy (Christy's best friend then) and Marty my best friend, would almost always be at my house. We would talk about Stan all I wanted. Marty listened to me for months and months talk and cry. Last night Christy came home to a house all asleep. I wish we lived in town, I hate Christy and Chris driving so far home from work, and the gas... oh the gas.

They printed my letter in the paper again! I hope we can help plan a big wooden playground. We need plans, grants, donations and help. I am still having a few E mails saying someone planted a tree in Maxie's name. We are so honored. Thank You.

Maxie, I love you!
Grandma, Julie

---

Thursday, April 29, 2004

I had a good day yesterday. As good as you can get I guess.
I cannot believe it has been a month!

I went to the dentist to get (4) teeth pulled. It was my first trip alone to town. I cried most of the way. The dentist was so gentle with me. You should always go in crying, they treat you much nicer. He just pulled one instead of four as planned. I had infection going all the way back to my ear. He was amazed I was not screaming in pain. I told him my pain was in my broken heart. Like most people, he just changed the subject quickly.

I stopped at Lowe's and walked around for a long time. I love Lowe's. I wore uniforms for 25 years of working at Albertsons so never learned to like clothes and jewelry, so I like Lowe's. Picked out the colors for our new roof that we have been fighting about for a year. The insurance company only wanted to pay for part...

I came home and tried to rest. My tooth was killing me but the pain pills helped. Christy went to work for the first time last night. She called while driving to town, crying so hard. It was her first time to drive alone to town too. (She just got up and said she was very sore.) I am sure that the next few weeks she will hurt both ways. She sat most of the time at the hospital the last few months and then has slept the last four weeks. She has no muscles left at all. The weight she gained will drop back off quickly, as she works more each week.

Robert did not want to go to bed for me last night at all. He always wants to wait till all his chicks are in the hen house, if you know what I mean! When Christy works the late shift at Autozone, he just hates going to bed. When I finally did get him to bed he went to sleep as soon as the light was out.

The lady (if you want to call her that) next door built a new fence around her house. We live on acre lots, so that is a lot of fence. $14,000 fence to keep all dogs and deer out. I was upset at first but now I love it. The puppies will stay in our yard now, not hers. Now maybe I can get them house broken... might just shave them and leave them outside...LOL

Some of you have ask about Shantee, the little girl from Maxie's class that is sick also. Still no donor match. Christy called her Mom the other night very late. She was afraid she might wake her up but she and Shantee were at Walmart shopping. She goes very very late at night and Shantee wears a mask and gloves. That is so sweet....

Well, tooth is hurting! Why do we say that? There is NO tooth there now!

Maxie, I miss you so much.
Grandma Julie

---

Tuesday, April 27, 2004 7:08 AM CDT

I forgot our Chemo Angels.... we had the best in the world. They have become true friends. I hope they will be in our lives forever... just for me! Chemo Angels and Make a Child Smile are the very best origination that we dealt with.

I woke up yesterday and the first thing I saw was a program with a doctor named "Lorraine Day." She does not believe in chemo or radiation. Have any of you every seen her on TV or read her book? I am having such guilt that I felt all along we were just killing our Maxie quicker with chemo and radiation and did not speak up more. He was not mine and a part of me kept saying it is now not my decision to make. Yes, I am just trying to find something or someone to blame... but right now I am blaming me mostly.

Guns killed Stan, so it was easy to be mad at guns. It was easy to say if the gun had not been handy he would not have died. Cancer is another thing. Where did he get it? Why would his body not fight it off? Was it because of the part of the country he was raised in? Was it what we all breath or eat? Was it because of things his Mother did or ate while carrying him or his father did before making him? WHY, WHY, WHY I am going crazy thinking about this. It is easy to say forget it! It is easy to say move on! Words just words!

Christy is still sick. Full of infection and I think her lymph nodes are all full to the max. Stress and depression can kill a person by hurting your body not fight off bad things. I do not know weather to be a tough "Mom" or baby her because I know how she is feeling. I had a lot better support group when Stan died. I also had a job that I could not take off, so I had to get up and go. Most of me just gets very angry and stressed out myself. What a household we have right now! I want and need to cry, scream and mourn too, not be "the strong" person. I am not strong and am coming apart inside.

Chris's looks very tired. The stress of his job, Maxie's death and this home he comes home to is very bad for him too. Robert, is trapped in the very middle of all of this. What are we doing to that baby? I forgot to even pay the electric bill and yesterday the guy came to turn it off! He let me go call and pay on the phone. The thing is, when you are past dew you have to pay that month and this month. $480.... with late fees. I need to start thinking. I am thinking all the time, my mind never stops. If I take the my meds they make me sleepy.
I, I, I, I,.... gee "I" am so self absorbed...

Wish all of you were next door. Our support sucks. Just like when Maxie was in the hospital. When it comes down to it, only one or two that even care, really care. What would we have ever done without Caringbridge? I do not even want to know!

MAXIE, I LOVE YOU MORE!
Julie (Grandmother)

---

Sunday, April 25, 2004 7:58 AM CDT

Woke up angry, very angry! I really believe they just treated Maxie the whole time for money. I really do! I think they should have fixed his bile duct drain and let him go home to die... 8 months ago...

My srink, my dentist, and Christy's OBGYN all told us this week, most people do not live from that kind of cancer. Funny how no one said that till after he died. Hell, at least give us the choice weather to treat or not. Plus, I wonder what drugs do they already know about that has not yet been approved or will put cancer hospitals out of business. Pissed, just pissed.

Now, the "MAKE A WISH" story, you have been asking about. The very first day, I told them I wanted him to go or get a his wish ASAP, soon, while he felt good... I wish we had got the lap top all the nurses told us to ask for the first month. (Of course they new he was dying and we did not!)

They sent 2 ladies out to our house, the first day he got out of the hospital, sick from chemo and drugged up. He had no business being interview then. First he ask for a pool for me... I said no, you are asking for me, it is for you. Then he ask to meet "Steve the crocodile hunter", for Robert. Again they said I do not think so and we said that is for Robert, not for you. (That is the kind of kid he was.) Finally he ask to meet Tom Hanks or go to Hawaii. They said they did not think they could do that and would he like to meet Harry Potter or go surf fishing? He hates fishing and they kept asking that. He ask about "Will Smith" and they acted like they did not hear him.

We called them later and told them we wanted him interview again when he felt better and not by rookies. I think they did it over the phone or ask Christy what he wanted. Finally we all decided to just settle for Disney World. We knew they could do that! Hell No, they at first said they needed his real Fathers permission. We do not even know where he lives. He has not been a part of the boys lives for years and years. We ask the other Grandmother to help get that. That took a long long time. Maxie getting worse and worse. Then when they did get, they said they could not take Chris and I, only Christy, Robert and Maxie. We all live in the same house... Have for a long time. Christy told them NO, Maxie would not want that plus he said now, he did not want to fly! Maybe a train!

It was getting close to Christmas by then... remember this all started months ago now. So Christy told them we wanted a puppy for Maxie to love and take care of. We found one at our local pet store a few weeks "AFTER" Christmas and called "Make a Wish". The pet store said they had sold them to Make a Wish before, but they said NO, they had to get from THEIR own special breeders, a lie. A few weeks later Christy decided to use some of her tax refund money to go ahead and just buy it. She called, it was sold that day but they had a different one. We went over and got Missy.

When we called to tell MAKE A WISH, forget the puppy, they said they had just got one. We told them to forget it but they said it was all arranged. Again a lie. A few weeks later we went to the airport, late at night to pick up Sissy. No party, nothing special, just here she is, let me take your picture with the shirt on and good-by. Sissy just hid for weeks. We called the breeder and she said she was very skittish. We ask why would you pick that for a kid? How did Make a Wish find you? On the Internet! We ask if we could take her back to the breeder? If we did we had to agree that was his one and only "WISH". NOW REMEMBER, THIS KID IS DYING....

Maxie by then was going down hill fast. We just said forget it, send us the papers and we will sell or give her away. No, you cannot do that! We called back and said forget it, we will keep her. (Then we could do what we wanted, right!) Right then, Sissy started coming up to us and changing like she understood we were keeping her, strange, very strange.

I went out and charge a lap top that he just loved and Christy and I loved having at the hospital. I told Maxie when school was out we would all take a trip. To New York or where every he wanted. He did not make it you know.

If you want to help make cancer kids happy... support "MAKE A CHILD SMILE" or just write the parents and ask and give that.

Maxie, I love you so much.
Grandma Julie

PS: Forgot, Christy got 2 big shots for her birthday at "Patient First" for infection going to her ear. Nice birthday.....

---

Friday, April 23, 2004 Morning

CHRISTY'S BIRTHDAY TOMORROW, "3?" Half way between 30 and 40!

ROBERT IS OK ..... TEXT NEGATIVE. **GREAT!**

What a busy day I had yesterday. Christy not sleeping and took almost everything she could find. She came and got in bed with me for a while and said she felt drunk.... I told her not to take whatever she had taken again or mixed together. She is really having a very hard week this week. Infection, pain pills, sleeping pill, nausa pill, and crying. Her body is going every direction.

I had two doctor appointments yesterday. The shrink and dentist. I hate to go to either. I started the day taking Robert's morning urine to our family doctor and off to the shrink. Dr. Holden, said I am going good. Refilled my meds and sent me on my way. Then off to the dentist. My poor teeth. I need to be on one of those shows that overhaul people. I do not know what show to write. "THIS OLD HOUSE," "CURB APPEAL," "THE SWAN" or what.... I think for me I would need about 10 shows to fix everything. Anyway, my teeth are shot. I have great bones but that is about all. He wants me to have 4 pulled now, and about 50 root canals and crowns and 50 filled. That is the way it sounded to me. Of course Advance has s*#t for dental insurance. Last time my dentist laughed at it. Think I will go to Canada or Mexico and get them fixed. Let's all get a bus and go together, DENTURE PARTY!

When I got back home, Christy was sitting on her bed, eyes almost swollen shut. She said for me not to leave her alone that long again! I think I saw her cry more the last 2 days than any in her whole life. I sat and talked and listened and then cried a little myself. Then I ask her to call the doctors office to check on Robber's pee test. It was fine. Yea, good news. We were so happy. When Robert got home, we went to Farmville to eat to get Christy out. Farmville is north west of us and Richmond about 35 minutes away from our house. I like to shop there because not as busy as going toward Richmond. The traffic is getting so bad when going east. Richmond reminds me of Dallas about 40 years ago. It is growing faster than roads and schools can be built.

Christy with Magell even came and got in bed with me again last night, but could not stay because Chris snores to loud. Guess I am use to it or was just so tired I do not hear. Last night was Robber's first night in his own bed, all night in months and months. It upset Christy a lot, more than Robert! Hard not to have a child in bed with her again.

I have decided that as the bad memories of Maxie being sick and hurting fade, we all miss him more and forget why he passed and the pain he was in. At the first you are glad he is not hurting any longer but now you want the Maxie we had for 10 good years back. What mixed feelings!

Well, I hope today will be a good day. One day at a time.

Maxie, I love you more!
Grandma

---

Wednesday, April 21, 2004 11:12 PM CDT

Well, I guess I am going to write since I am so angry and I probably need to vent! I am mad at the news for concentrating on things that were long ago and there are many more things to focus on! Damn Dr. Phil for worrying about only fat people and couples that cheat. How about a family with medical crisis! Or families that are homeless! I guess its just something I am feeling.

I had to take Robert back to the doctor today! He had to get more urine tested. Its still contains lots of protein. She wants to test him for kidney disease. Ok if the big guy is listening, leave me alone! I can't handle anymore! I can't carry any more loads and I know my mom can't either! What now? More doubt of why?!!! Man this is so unfair. I hope its something simple when they test more thorough.

I miss Maxie so much at night I cry and cry and rub Robert's face. I felt bad at the hotel when Angela and I were there and he got in the pool and he looked at me and I looked at him and we both knew what we were thinking. No brother to play with any longer. I felt awful for him. He is handling thinks so well. He is a sweet boy when he tries....ha ha! I went to the the drug store for Robert's medicine. And everytime I see someone I know they have that same face. Like awwwww, what should I say? Just be YOU!!! I want to be treated like I was before, Maxie would want happy faces on everyone. He was never sad about his illness, and he accepted it. He was worried about us but he dealt good with it better than we did. What a great young man!!!! Well I am off to bed. I am sorry I am in the angry stage. There are so many families with things going on and need our support. Prayers to all...

Love,
Christy
"Hey Maxie"

---

Tuesday April 20th, 2004

This is the last letter I wrote to my towns little paper:

"I pray to God to help him. To let me hurt, not him. I hold his little hand even while he sleeps. You watch every breath he takes. Oh God, I lost one,
please do not let me loose another."

I wrote theses words in our paper about 8 short months ago. My prayer was not answered. We lost Maxie March 27, at 5:40 PM, six days before his 11th birthday. Maxie had been in the hospital almost 7 long weeks the last round. It was the longest 7 weeks in my life but I so wish now I just had it to do all over again. I wish I had the whole 8 months to try again. What would I change? Almost everything.
First, I would have paid more attention when he was just a little sick at school last spring. I would have taken him to the doctor every time he said he felt bad. I would not have cut his hair off when starting chemo. I would have let it fall out and then save every hair I could find. I would tell them to try harder or find another surgeon to take the cancer out, even if it meant the liver and stomach too. I would have tried an a natural cure we had heard of. I would NOT let him have ANY radiation. I think it was the wrong thing to do! I think it cooked him inside and infected the cancer or something. I would not let him have his needle changed except by his regular nurse. His needle got infected with a yeast infection, that is what killed him, not the cancer! I would not have taken him off the life supports ever, (well maybe after a month or so). Right now I would just love to touch him, smell him, kiss him and whisper in his ear... " Please! Maxie, please, do not go, fight, oh please fight."

What do I miss the most? His laugh and smile. I never heard Maxie say one bad thing about any person, ever. He was sweet, smart and beautiful inside and out. Oh, God we miss him so.

Maxie was worried about the what people were doing to our world cutting down trees. After the storms we had the past year, he got so upset that the trees all fell down and that meant less oxygen. I have ask that trees be planted in his name instead of flowers sent to his funeral. A lot of people have written to me and said they did. THANK YOU!

We would also like to build a playground somewhere near the river, in Amelia County. A big wooden playground with room to grow. Maybe the beginnings of are real park on our side of the river for Amelia County. I see lots of picnic tables, maybe a tennis court and maybe a sand volleyball court, lot of things. But most of all I see trees, lots of trees. Every class could plant a tree every year till we could plant no more, then plant some on our streets and school grounds. I would really like to help plan and be involved in this and will need all the help and ideas you can come up with. From where to put it, to finding the money, donations, grants and plans. Please call or write to me I am very serious about this.

Now, go hug your children tight, kiss and smell them. Think! In one day, one week or 8 shorts months, they could be gone.

Thank you for all the love, prayers, and support the
last few months. I will never forget it.

The Lagourney Family

Chris, Julie, Christy,
Robert and Angel Maxie
Jujualag@aol.com
www.caringbridge.org/va/maxie/

PS: WHERE ARE WE FROM? GRANDDADDY WAS BORN HERE IN RICHMOND, VA.
I WAS BORN AND RAISED IN BIG SPRING, TEXAS.
WE HAVE LIVED ALL OVER TEXAS,
BUT I THINK I CALL DALLAS HOME.
WE MOVED BACK TO VA. IN 1997.

---

Tuesday, April 20, 2004 Morning

This is my last letter I am sending to the editor, of our small local paper:

"I pray to God to help him. To let me hurt, not him. I hold his little hand even while he sleeps. You watch every breath he takes. Oh God, I lost one, please do not let me loose another."

I wrote that in the paper about 8 short months ago. My prayer was not answered. We lost Maxie March 27, at 5:40 PM, six days before his 11th birthday. Maxie had been in the hospital almost 7 long weeks the last round. It was the longest 7 weeks in my life but I so wish now I just had it to do all over again. I wish I had the whole 8 months to try again. What would I change? Almost everything.

First, I would have paid more attention when he was sick at school last spring. I would have taken him to the doctor every time he said he felt bad. I would not have cut his hair off when starting chemo. I would have let it fall out and then save every hair I could find. I would tell them to try harder or find another surgeon to take the cancer out, even if it meant the liver and stomach too. I would have tried an a natural cure we had heard of. I would not let him have ANY radiation. I think it was the wrong thing to do! I think it cooked him inside and infected the cancer or something. I would not let him have his needle changed except by his regular nurse. His needle got infected with a yeast infection, that is what killed him, not the cancer! I would not have taken him off the life supports ever, (well maybe after a month or so). Right now I would just love to touch him, smell him, kiss him and whisper in his ear... "Do not go, fight, oh please fight."

What do I miss the most? His laugh and smile. I never heard Maxie say one bad thing about any person, ever. He was sweet, smart and beautiful inside and out. Oh, God we miss him so.



Maxie was worried about the what people were doing to our world cutting down trees. After the storms we had the past year, he got so upset that the trees all fell down and that meant less oxygen. I have ask that trees be planted in his name instead of flowers sent to his funeral.
A lot of people have written to me and said they did. THANK YOU!

We would also like to build a playground near the river, in Amelia County. A big wooden playground with room to grow. Maybe the beginnings of are real park on our side of the river for Amelia County. I see lots of picnic tables, maybe a tennis court and maybe a sand volleyball court, lot of things. But most of all I see trees, lots of trees. Every class could plant a tree every year till we could plant no more, then plant some on our streets and school grounds. I would really like to help plan and be involved in this and will need all the help and ideas you can come up with. From where to put it, to finding the money, donations, grants and plans. Please call or write to me I am very serious about this.

Now, go hug your children tight. Kiss and smell them. Think! In one day, one week or
8 shorts months, they could be gone.

Thank you for all the love, prayers, and support the last few months.
I will never forget it.

The Lagourney Family
Chris, Julie, Christy,
Robert and Angel Maxie

---

Monday, April 19, 2004 Morning....

LIFE GOES ON!


Good Morning, what a trip we are on. Up and down, down and up it never ends.. for a long time I know. I cry in the daytime and Christy cries at night. Robert is the one I worry about the most. I think he is starting to try to hard to confront his Mom. Like he thinks it is his job.
That is not good, I think.

He has his days and nights all mixed up. He will not go to sleep till around 2 most nights. School started today and we could not even get him up. Think we might have to give him something to relax him
at night for a while.

Christy still has a week till she goes back to work and might have a little surgery this week. I think it will be better for her when she does go back to work. She is so out of shape she is going to be so sore! I want her to go into management now at Autozone. She is ready! She needs the money too! She had grown up so much the last year. I think it will keep her mind busy also.

I keep thinking about Aunt Jenny. How hard it is going to be on Debbie and Georgia. They have had a bad year. Debbie lost her father this year from cancer too. The is just not a good year for Chris's side of our family.

Me, I am writing, here and my book. I have 3 long pages so far...LOL
I want people to be able to taste and smell west Texas of the 50's. How and why I am like I am. We have been looking at old pictures also... we found a lot of Maxie I did not know we had. No voice much just a little on video. I so wish I had a tape of he and Robert playing and laughing. He had a laugh like an angel. Every time Chris and I would here him laugh we would smile.

The puppies are doing a little better. I will try to take a picture of them soon and show you how cute. Christy has been trying so hard to train them. We are going to build a fence on Chris's days off.

As you see, life goes on. Little steps forward and big steps back but it goes on. I wish now I had had 6 kids and lots and lots of Grandbabies. Oh well...

Maxie, I love you more!
Julie

---

Saturday, April 17, 2004 3:20 PM CDT

MAD! MAD AS HELL AT EVERYTHING.

Is this part of grieving... I think so, but not a very good part.
I wake up mad. I go to sleep mad. I am mad at everyone on in my life, the closer the madder I am. No one can please me. What is wrong with me?

I felt like this after Stan died and I do not think I ever got over that feeling till Maxie was born. What did fate to do me? Why all the wrong roads? Why did I not turn left instead of right? Depressed is not the word for the feelings I have. Anger ... postal ... mean..... just like a bull in a bull ring.

Chris's Dad's sister, his only Aunt he has left, his favorite cousins Mother ... has weeks to live. I am glad Maxie got to meet her. I wish now we had all been together more. She wanted Chris yesterday. She held his hand so tight. I took her an afghan, a bright warm afghan. Everyone needs one in the hospital. Something that is not so sterile and is from home... We sat and talked and laughed and cried a little. We stayed till Christy called and wanted us to come home. She was alone for the first time since Maxie died and was crying. I called Susan, a great neighbor, to go up and check on Christy.

Aunt Jenny's doctor said one lung is already too damage to work again. To take her home Monday and make her as comfortable and happy as you can. I hugged Georgia, (the daughter) and told her how I wish now they had told us to do that months ago with Maxie. I wrote an E mail to Debbie, (her Granddaughter) and told her to get a tape recorder and just sit and talk. To listen to Aunt Jenny as you ask about her childhood and everything you can think of. Learn from my mistakes. You will have her voice forever and some family history you will want later.

Well, am tired, very tired. I have a question? I need help with funeral etiquette. I am from a very small family and have not been to may in my life. I need to know what, when, were, how, should and can? Is there a book like weddings, you can read? Is it different for races, income, age, religions or what?

Are you sure you want me to vent on Maxie's page?

Maxie, I love you more...
Julie.

---

Friday, April 16, 2004 7:27 AM CDT

CANCER, CANCER, CANCER

I hate that word. Yesterday we were told that Chris's favorite Aunt, who just came to Maxie's funeral, is in the hospital. She is having a biopsy today to see if she has cancer.

Christy and Robert had taken a 2 day trip to get away and do something to make Robert happy. It is like the Hummers, a wish of Maxie's that I think now she is trying to do. They stayed on the 10th floor of a very nice hotel. Maxie wanted to go to New York and just stay one night up high in a big hotel and eat at a fancy place . One of his angles lives in NJ and we were planning a short trip this summer for him. Life was just to short.

Christy came home sick. Very sick. Our family doctor called yesterday to check on Robert and tell Christy about a support group that meets here. I answered the phone with my laryngitis... LOL She thought she had the wrong number. I laughed and said no, thinking what I need is a doctor. I told her Christy and Robert were not home that I would tell her she called. Not long after Christy and Robert got home and she called the doctor back anyway because she is very sick (again).

She (our family doctor) said to come over and pick up a couple of prescriptions for Christy. She would not be at the office because she was leaving for a house call. I JUST LOVE HER, AND SMALL COUNTY TOWNS. LOL So today is doctor day... Robert to here, Christy in town to an another doctor. Chris and I to a third hospital to see his Aunt Jenny. Just the word hospital and doctor gives me chills right now. I do not think I could even walk back into MCV. I need two test for screening but I do not think I would even want to know right now. Cancer, I hate you. Get out of our lives. Hospitals and test go way also.

I miss writing everyday in my journal here. I tried writing to myself but it is not the same. I guess I am one of those people that needs an audience. Maybe Caringbridge need a section just for bereaved parents and grandparents.

Someone ask me how many trees I have received yet. None.. but when all the bills are in and paid ... the donations we have left are going in two places. A savings account for Robert to go to college and another for a playground here in Amelia with lots and lots of trees.
Trees that will live a long long time.

Well, better get up and going. We all have a busy day around here today.
Maxie, I love you more...

Julie (Grandmother)

---

Wednesday, April 14, 2004 5:52 AM CDT

A lot of you have been asking me about "MAKE A WISH" and why am I bitter about them. It is a long story and I will put in the journal soon. First I want to share with you the first page of my book.

**********

OUT ON MY LIMB

(by Lynn Asbury)

Have you every climbed up a tree, out on to a limb and just sat there looking around? Have you ever sat on top of a house or the roof of your playhouse and looked down on your yard? The yard you play in every day. The yard that you thought you knew every inch of, now it looks so different. The same but different.

Every person has a view of their life, of their little world. You might walk right beside another person and have an entirely different view of the same thing. Does that make one right and the other wrong? No, I do not think so! This is my view of my story about my life.

Dedicated to the kids in my life.
You changed me so much, all for the better.
Stan, Christy, Maxie and Robert

**********

To be continued:

---

Monday, April 12, 2004 8:42 AM CDT

OH, MAXIE I MISS YOU SO...... I am screaming and crying so hard. I want to see you, hear you, smell you and kiss you again so bad. I cry so hard I almost throw up. I hate holidays the first year! I remember the first year after Stan died. We (our little family) tried so hard to help me. My older brother, Johnny Bob, invited us to Temple for Thanksgiving. That helped some, but I remember just sitting and watching the family like I was standing outside of a window looking in. The first year is so hard.

The grief for a parent is so different. On a scale of one to ten ... for a parent it is an 7 or 8. For your child it is a 99.... Can I say how it is for a Grandchild? For me it is like a 97 I guess. The bad memories still fill my head so much. Little good ones are trying to push their way in but not having much luck. I use to always say "I LOVE YOU" and he would say "I LOVE YOU, MORE". Then I would say, "NO, I LOVE YOU MORE!" That would go on about 5 minutes. Since Maxie was born we have been telling each other how much and how big. We love bigger than the house, than Texas, than the world, than the universe ... etc. Toward the end, when he did not want to talk or had a tube in his throat ... we would both just hum or grunt it and we both knew what we meant. Even the nurses got to know his sounds and what they meant. (CRYING SO HARD NOW.) The last time I heard him ... he grunted it over the phone to me... I hung up and called my brother and cried and screamed.... He is dying, I can hear it. Do something!

It is strange ... the love I have for my brother. I do not reach for him much. We were 5 long years apart and different than cats and dogs. But, you have that bond and history of being raised by the same parents in the same environment. That will almost be book in itself ... our environment. Anyway, the point I am trying to make, is that when I hurt clear to the bone or am scared... I still reach for him. He became a doctor and I became nothing. The day in the hospital when we were told Maxie had cancer, a very bad cancer. I went outside ... and called him. I wanted him to fix it. I screamed and cried so hard... (like now). "YOU ARE SO SMART, FIX HIM, FIX HIM, PLEASE," The nicest couple came up and just stood next to me for a long time while I talked. Then listened to me and hugged me. They became the first of many people in our cancer support family.
Now, she is fighting breast cancer!

I HATE CANCER, I HATE IT! Why can over 600 men die to fight this dumb war? Why can we go to Mars and the moon and not fix cancer? Why can we have a patch for smoking and not for Tylenol... WHY, WHY, WHY?

Robert cried last night! You are asking, "What, he cried?" Yes, that is only the second time I have seen him cry about Maxie. He has seen us all cry and we have told him it is very OK to cry. Where is he putting that pain? Maxie's ChemoAngels have been so good to him. He is starting to think the mail man comes to the house just for him. Spoiled... LOL


IF YOU EVER WANT TO DONATE TO SOMETHING THAT SUPPORTS THE FAMILY DURING THE FIGHT FOR CANCER... I HAVE FOUR THAT ARE ON THE TOP OF MY LIST:
("Make a Wish is on the bottom...Sorry, just a little bitter.)

***** Caringbridge *****
***** Make a Child Smile *****
***** ChemoAngels ******
***** Lighting Children's Lives *****


Well, you told me to come vent, and I vented! Do you want a dog? I do not like dogs.. Am a cat person! You just pour the sand in a box. Show them the box and leave. Done deal! I hate dogs....

How is Christy and Chris? Hurting also! Chris said the other day he was eating lunch at Wendy's and just started crying sitting there. Christy, oh my poor baby. She had been through so much in her life. It has made her strong. She is like an egg that has been dropped once to many times. Cracked and broken but still together. Please put her on top of your prayer list... Please.

Julie...
(Maxie's Grandmother

---

Friday, April 9, 2004 GOOD MORNING!

This has been one of the worse weeks I have had in my life, and I have had a few. My pain inside, watching my daughter hurting and knowing how bad it feels, watching Chris the big tough Grandfather say it hurts almost as much as loosing his son that he was so close too... and little Robert. I am not sure about Robert. He is one of those children that is so smart and shy but has a side of him that you know could go the wrong way in life if not pointed in the right direction. I think later it will be him that his brother not being around will hurt the most.

I have had a hard time not seeing Maxie in my thoughts as he was the last 8 weeks hurting and wilting away. He was so courageous! I could have never been that strong. I remember Christy asking him if he was scared not long after we told him he was going to pass away. The doctor had told us that day and he knew from our faces what was going on. She ask him if he was scared. He said no, just scared for you. (Crying, sorry, got to stop a minute.)

I have had a few small things happen the last few days to make me think someone is trying to let me know they are around watching. Kind of a "John Edward's" type of things. Maxie could not stand to see Christy or I cry about anything. It always upset him so. I think he is trying hard to tell us not to. We are not listening but I do think he is trying his best to say we are making him very sad, and to quit.

A friend of ours that knew Maxie when he was a baby sent us a big beautiful rose bush. I have decided to make a heart flower bed in my front yard and put 11 rose bushes in it for him. My brother again said he will buy us a tree to plant here or at his school in his name. I do not know about the school but we have no trees so going to plant one a year where every I live in his name. I always wanted to build a playground in Stan's name so maybe I can do one in both of there names here in our little town. They have nothing for the kids or teens here. That might keep me busy. One with lots of trees.... real trees, not pines. If anyone wants to help me... plan this... please write me. I need all the help I can get. I wonder if "OUTKAST", "Tom Hanks" or any "Moose Lodge" would help...LOL

Speaking of mosses, I am still getting them. My poor house is covered. At least they are house broken, not like Missy and Sissy. What a time we are having with them. Being alone so much when we got them was not a good thing. Well, I have to get moving. I have slept and cried most of this week. Not at night, just lay there thinking about Maxie. Need to get up and stay busy so I will not think so much.

My writing....?? I do not know yet where to start. I do not know to write my life story or just Christys rape and Stan's strange death. I have been printing and spell checking my journal and this journal for days. Christy better not ever say anything about my spelling again! The journey of Maxie's cancer is a story its self. Do people buy sad ending stories? If I could sell it...I be on Oprah... I could build a very big playground... LOL

Have a great day, I am..

(Maxie, Thank you, I love you forever)

PS: I am still being ask for our address for gifts for Robert or donations... Please, do not send any more gifts. If you want to save them and send next Christmas or Oct. 26 when Robert will be 10. What a suprise for him that would be! Anyway, our address again is:

9911 Knobs Hill Lane
Amelia, VA. 23002


Julie

---

Wednesday, April 7, 2004 Midnight

FROM CHRISTY.....

Well, I know I don't write too much anymore. I have nothing nice to say I guess, but I need to say some stuff. I miss him and I want him to come home. I am so frustrated that his life was crap the last nine months. Even though he made the best of it, I am pissed! I am glad he is in no pain. It's funny, I have been saying that same thing all week, but now I am in pain. This is like no other heart break I have ever had! It is a yearn for his voice his smell. I can't get a grasp of his smell.
It makes me feel crazy trying to remember his voice.

I remember the last few days that puffy little boy and the tubes and 16 IV's! How can I get that out of my head? He might be pain free and happy thoughts going through his mind, but now I am here suffering to be with my first born boy. I am probably making Robert feel like my boyfriend. I hug him and make him talk all the time and tell me he loves me over and over again. Why does cancer have to pick my boy? What did he do? Well, he showed me how to be a selfless loving Mom. I know what its like now to put your kids above and beyond everything else. He must have been here to fix me, and love my Mom.

When I would get cramps he would ask me if I am OK? We were always in the hospital at the female time and he would let us sleep and asked me if I wanted his pain pills? We packed them everywhere we went. He was the most caring and concerned person I have ever met. I don't remember him even talking bad about anyone. He was so sweet. The love he had for all of his favorite nurses. Barbara was his momma nurse, Angela his girl, Cable took care of his momma, and Val she came in and check everything so thorough. And Michelle that was are night time woman. We loved her she let us sleep. She broke up our party that was a good memory with Maxie too. Dawn, Cable, Maxie and I were ebaying. It was fun while we ate pizza. But Michelle kicked everyone out and told us to rest! The party popper, I miss my nurse family. I miss them taking such good care of my boy. I think once Barbara went out of town and Maxie wouldn't get up he gave up.

That damn needle change in the laproscopic surgery. That where the fungus started! DAMN DAMN DAMN! No, I am not OK! You can quit asking! Its too soon for me to be OK. I get these phone calls saying are you OK? I have no life insurance either and my boss wants me to wait a little longer before I go back to work. That is stressful!! UGH!!! But he is right I cry most of the day and I am really angry.

Thanks for all of everyone's help AL & Leslie thanks!!
OUTKAST thanks!!!!

I gotta go I am crying. And just can't explain how I feel anymore!

Love,
Christy (Maxie's Hurting A lot MOM)

---

Wednesday, April 7, 2004 0:56 AM CDT

Well, I know I don't write too much anymore. I have nothing nice to say I guess. But I need to say some stuff. I miss him and I want him to come home. I so frustrated that his life was crap the last nine months. Even though he made the best of it, I am pissed! I am glad he is in no pain. It's funny I have been saying that same thing all week. But now I am in pain. This is like no other heart break I have ever had! It is a yearn for his voice his smell. I can't get a grasp of his smell. It makes me feel crazy trying to remember his voice. I remeber the last few days the puffy boy and the tubes and 16 IV's!How can I get that out of my head? He might be pain free and happy thoughts going through his mind. But now I am here suffering to be with my first born boy. I am probably making Robert feel like my boyfriend. I hug him and make him talk all the time and tell me he loves me over and over again. Why does cancer have to pick my boy? What did he do? Well he showed me how to be a selfless loving mom. I know what its like now to put your kids above and beyond everything else. He must of been here to fix me, and love my mom. When I would get cramps he would ask me if I am ok? We were always in the hospital at the female time and he would let us sleep and asked me if I wanted his pain pills? We packed them everywhere we went. He was the most caring and concerned person I have ever met. I don't remember him even talking about anyone. He was so sweet. The love he had for all of his favorite nurses. Barbara was his momma nurse, Angela his girl, Cable took care of his momma, and Val she came in and check everything so thorough. And Michelle that was are night time woman. We loved her she let us sleep. She broke up our party that was a good memory with Maxie too. Dawn Cable and me and Maxie ebaying. It was fun while we ate pizza. But Michelle kicked everyone out and told us to rest! The party pooper, I miss my nurse family. I miss them taking such good care of my boy. I think once Barbara went out of town and Maxie wouldn't get up he gave up. That damn needle change in the laproscopic surgery. That where the fungus started! DAMN DAMN DAMN! No I am not ok quit asking its too soon for me to be ok. I get these phone calls saying are you ok? I have no life insurance either and my boss wants me to wait a little longer before I go back to work. That is stressful!! UGH!!! But he is right I cry most of teh day and I am really angry. Thanks for all of everyone's help AL & Leslie thanks!! OUTKAST thanks!!!! I gotta go I am crying. And just can't explain how I feel anymore!

Love,
Christy (Maxie's Hurting Alot MOM)

---

MONDAY, APRIL 5TH, 2004

Christy had a very hard day Monday. I think she is finally starting to let go. Only time will help, I know. I did not have a very happy birthday but at this age, who does! Robert so far is doing great. I think I had prepared him as good as you can. Me, I cry at little things like finger nail clippers or making a egg sandwich. Time, only time.... I miss you guys.


SUNDAY, APRIL 4, 2004:
I have had a very bad few days. Very sad and depressed. Crying all the time and thinking even more. The year after Stan died I was so sad and now am sad and confused. I am glad Maxie is not in pain any longer but I miss him so. Such mixed feelings.

Robert has been very sweet the last few days. Christy doing a lot better than I thought. Guess she feels the same as I do. So glad he is not hurting. 8 months is a long time to die. I hope I do not every die like that. Something quick, Please.

I keep thinking how can I use all of this to help others. Something more than giving TV remotes to new cancer pacients. Not rich, so cannot give money. What can I do? Medical advice? We are not doctors! I am going to print again a list of things people should bring or send to people who is in the hospital with a child with cancer.

We could write a Caringbridge cook book and sell it on line for donations to Caringbridge... all put in easy things..

I am not going to write but about once a week for a while on here.. then slowly stop. If any one you know that is new needs advice about this type of cancer, please send them our way. I am going to be busy writting the story about Christy's rape and Stan's death. You know my email address... please keep in touch. I am busy now doing Thank You cards and a lot of you and friends did not put return addresses on them.... That is not fair.. So this is what I am writting:

Thank you so much for the help, thoughts and many prayers during this time of need in our lives. You will never be forgotton.
THE LAGOURNEY FAMILY

Julie (Maxie we miss you)

---

Saturday, April 3, 2004 2:37 AM CST

HAPPY BIRTHDAY OUR BABY. WE MISS YOU SO. I ACHE INSIDE. I FEEL SICK TO MY STOMACH. I LOOK FOR YOU EVERYWHERE BUT CANNOT FIND YOU. I MISS YOUR LAUGH, YOUR SMELL, YOUR SWEETNESS AND JUST YOU.

The funeral was beautiful. About 100 people came and the right words were spoken. A lot of tears were shed. His class came and all the children after the funeral let about 40 balloons go. Christy had a very hard time going in but I did fine all day. I am going down now! I have been so sad all day.

Christy went to the funeral home to pick up the flowers and took Robert to the doctor for a soccer check up. He had protein in his urine so has to go back again tomorrow.

It is almost 4 AM and I cannot sleep. I miss him so. I want to get into bed and never get up. Crying, cannot type...

Julie (Maxie's Grandmother)

---

Wednesday, March 31, 2004 7:28 AM CST

I think the habit of writing will be with me forever. Maybe that was one of the many gifts Maxie gave me...(not spelling). I am starting to list them in my mind the last few days. Like my photography that my Father-in-law had started me doing when Stan was born and I had stopped when he died... I took hundreds and hundreds of pictures in the '70s and 80's, some very, very good. Now I have that back.

Love is another.. I was never, never going to love again after Stan died and Maxie gave that back to me.
Christy is another.. she is the woman I always knew she was....
Robert is another.. Christy had him to keep Maxie company...
God is another.... I am sure there will be more... all the time...

We were ask why cremation? After my son died in 1986... I went to the cemetery all the time like most very sad Moms... First I cried and cried, talked and talked, screamed and screamed. Then as time went by... I started thinking about how he looked... NOW! It drove me nuts! I told my family about it, and right then my Mother-in-law, Hattie, decided to be cremated. I told my brother and he said he already had his plans to be cremated and where he wanted to be scattered. Then my Father-in-law... Stanley, was... and he and Hattie are in a nitch together, here in Richmond, their home. Chris also wants to be scattered in the Blue Ridge... I wanted to be scattered over Stan. Then I watched a show on embalming, and that was it... never did I want that done to a loved one of mine. ASHES TO ASHES, DUST TO DUST! I also think golf courses and cemeteries are the biggest waste of land and trees almost in the world.... You asked! Christy has her reasons also... She had promised Maxie no more cuts, sticks, needles, tubes or pain again.. NEVER...

Only one more story today... Maxies' and our family doctor called yesterday. The hospital or the doctor's at the hospital had not called her, and they should have! I told her about Saturday. I could hear the tears softly coming down and she told me this.. "Saturday night I had a dream, a happy dream and Maxie was in it and happy." She said I really did... I said maybe he came to say thank you and good-by. Cold chills ... yes. I think right now he and Stan are both watching over our family and playing. They are both so young and so much alike. They are happy except for our tears ... and they know they will stop someday.

One of my best friends called and is sending me a rose bush to plant. This ugly house has no trees and no flowers at all. My brother also called and said instead of flowers at the service, to let him know when I wanted to plant a tree and he would pay for it. I told him I had seen a Magnolia tree last year I wanted for around $600.00 and we both laughed. He told me to come to Texas soon and rest. I am, maybe I can bring Robert with me. (And visit Stan in Duncanville.)

I have a list of thank you things to do on here.... soon.
Julie (Maxie's Grandmother)

---

Tuesday, March 30, 2004

The memorial service will be Thursday at 2 PM at Hillsman-Hix Funeral Home and Florist (JimHix@TDS.Net), 16409 Court St., Amelia, Va. 23002, 804-561-2521.

There are 2 florists here in Amelia. One at the funeral home, and another called Flower Boutique, 804-561-5683.

Instead of flowers please plant a tree for Maxie in his name. He always worried about all the trees being cut down. Any donations that we have left are going into a fund we are setting up for "Mr. Honer Roll" Robert, for college.

Monday, March 29

We had a very busy day with people stopping by and the all the phone calls yesterday. Mostly, it was friends from the school. His teacher was not even going to go teach yesterday she was so upset, but she decided that her class would need her. She told them a few days ago, how sick he was, so yesterday, when she told them he had passed away, maybe they would not be shocked. When she told them she cried, and she let them cry. They noticed that Maxie still had some school supplies at his desk. She let each child pick something to remember him by. The last little girl noticed the last pen had his teeth marks on the top. They all cried again.

The pastor that is doing the service is going to let his church bus pick up the children at school and any that need a ride home he will make sure they get home after. I suggested at the end of the service we let each child let a balloon go "Fly" into the air together. We are all worried that most will not understand cremation. Amber's Mother had to tell Amber last night and she did not even now how sick he had become. She just cried and cried. The school nurse told us she saw them holding hands in the hall and when they saw her, they stopped and laughed. He loved her for 2 school years..
What a great gift he gave her...

I am crying.. and we have to go shopping for something to wear.

Julie (Maxie's Grandmother)

---

Monday March 29, 2004 Noon

We have been ask about flowers. Since he is being cremated and no place to lay them after, I am not sure. I know Christy wants flowers at the funeral home but in Maxie's honer please make donations to his fund or plant a tree in his name.

There are 2 florists here in Amelia. One at the funeral home and another called Flower Boutique, 804-561-5683.

I was ask to continue doing updates... Are you sure you want me to for a while? My spell check is worn out, my brain is numb, my keys are wet and I do not know what else to say.

God bless you all... Julie


Sunday Evening:
Surreal... the day was so like walking in someone else's body. We all are exhausted.... Christy and I have been cleaning some and we had to go make funeral arrangements at 1 PM. That was very hard! He was there in the back and they went and got his blanket off of him and his lamb Christy had put in his hand.. He will be cremated tomorrow. We ordered a beautiful small silver box for his ashes. It has a picture on the front of a gate to heaven. We are having his Name and dates plus (Turtle) engraved on it.

After we got back the phone never stopped ringing. Angela his nurse he loved came over. She and Christy went through pictures to pick out to use at the service. Christy cried so hard. I took a long nap. I heard the phone and people talking and I just rested.

Two more people stopped by and ask if we need anything. Rest, rest, rest and to cry alone. Chris is having a very hard time. Robert so hyper and into everything. He has been eating cream horns all day that Robin a friend of mine had brought over. I have about 2 weeks of laundry to catch up on and now company coming all week.. I might have to have cookie size xanax to handle this.

I have to write something for his program so I better go. Again, how can I ever thank all of you for your help. You will never know how you have become my family.

The memoral service will be Thursday at 2 PM at Hillsman-Hix Funeral Home and Florist (JimHix@TDS.Net), 16409 Court St., Amelia, Va. 23002, 804-561-2521.
Julie (Maxie's Grandmother)

---

Saturday, March 27, 2004 9:09 PM CST

Well, here I sit ready to tell you of my daily pain that childhood cancer has caused my child and my family. I started this journal just to release my feelings and yet I have met wonderful people who have gotten to know all of us and know the pain that cancer can cause. ON the other hand it has brought us so many friends to our life. From all over the country and the world. I knew today as I left for the hospital what my plan for the day was. I called my best friend Cheryl to meet me at the hospital and my cousin Debbie to be there for support.

I get to the hospital and look for his nurse,Angela,who had it tough this morning saying good-bye to Maxie. I hugged her and asked Barbara if she would come to his room around 4 PM. I get to the room and Cheryl is already there and mom said "OUTKAST" is fixing to call! I was like really.? A nice young woman from this site set that up for us. So they both called at different times and spoke to Maxie while I put the phone to his ear and they talked for a lengthy time. I cried and told them thank you. They were both so nice.

I told my mom that I wanted to let Maxie go. She just looked at me. I asked to see his Oncology doctor to come talk to me. So after asking his PICU nurse how they would do it, and with no pain I felt better. Dr. Russell came sometime later and I asked him if there was a chance he would ever come home and play his new Gamecube. He said in his opinion no, because he is not breathing at all on his own. T hat the cancer is spreading so much that if its not his lungs it will be the cancer. So I looked to mom and said OK. She said she just wanted him to be pain free. I laid on the side of the bed and squeezed Cheryl's hand from my grief,from my choice. So they had to get everyone together to turn him over, then wait for us to be ready.

I waited for Barbara, Angela and Val to come to PICU. They who were his nurses before. I looked at Dr. Russell, then at my Mom, then at his PICU nurse Debbie and I told her I was ready. She turned the machine off and took out all the IV's and then pulled his tube out. I laid my face next to his and cried so hard and told him how beautiful he was and how proud I am that he made me want to be such a good woman. I told him that he had been brave and fought a great fight. His heart kept beating for about 3 minutes then it just slowed down. I held him while everyone cried. I cried for Cheryl in the beginning and she was right behind me the whole time, She held me while Mom and Barbara held Robert because he was crying. Mom told me to tell him to go. So she told him to go while she told him she loved him so much. I cried and cried and told him he was amazing and that he had his first love and that I was OK he could go. His eyes slightly opened and his heart finally stopped about 30 seconds later. It was the best and hardest thing I have ever done. I wanted to let him feel no more needles, no more tests and no more pain. He was the greatest thing that has happened to me.

You know I had Robert too, just to keep Maxie company. Now its just Robert and I, we will be fine. I know that Maxie is watching and I am good with that. I loved him for 11 years and wouldn't have it any other way.

Thanks so much for your support. Someone sent me some money to buy a video camera. Thanks very much but I want you to know he had no life insurance so I will use that, and any money that has been received this week, to go towards his funeral expenses. I will update the arrangements tomorrow after I make them. It will be a long day tomorrow and I am feeling sick already.

Goodnight..

LOVE
Christy (Mom to the superstar Maxie)

---

Saturday, March 27, 2004 10:32 AM CST

I AM SITTING HERE ALONE, WITH MAXIE AND A LUNG MACHINE THAT SOUNDS LIKE A STEAM ENGINE. HE HAS A LITTLE TEMP TODAY BUT MOST OTHER THINGS ARE GOOD. THE BAD THING IS HIS LUNGS. THEY ARE FULL OF FLUID. THEY KEEP CALLING IT A WHITE OUT!

WE ARE TRYING TO DECIDE WHAT TO DO. I NEVER IN MY WHOLE LIFE THOUGHT I WOULD HAVE TO HELP DECIDE THIS ON MY CHILD OR GRANDCHILD. IF THE TUMOR HAD NOT CHANGED THE LAST FEW WEEKS... AND HE COULD EAT I WOULD SAY FIGHT, FIGHT, FIGHT! BUT WHAT ARE WE DOING? DO WE WANT HIM TO HAVE TO GO THROUGH THIS HELL AGAIN, JUST SO WE CAN HEAR HIM SAY I LOVE YOU A FEW MORE TIMES.

HIS LAST WORDS WERE TO CHRISTY, "MOM, I AM SCARED!". HE COULD NOT BREATH! I HATE THAT WAS HIS LAST FEELING. GUESS I WAS HOPING HE WOULD DIE IN HIS SLEEP WITH NO FEAR OR PAIN.

I THINK WHEN CHRISTY GETS HERE WE ARE GOING TO TALK TO THE DOCTOR AGAIN. WHAT HAPPENS? WILL HE KNOW OR FEEL OR HURT? WHY DID THEY SAID JUST A FEW WEEKS AGO HIS TUMOR WAS DEAD.. ARE THEY SURE IT IS NOT INFECTION IN HIS TUMMY? QUESTIONS I WANT ANSWERED FIRST...

THE ICU NURSES DO NOT KNOW ABOUT THE MOOSES SO I WAS TELLING HIS NURSE THIS MORNING ABOUT THEM. FROM OUT OF THE BLUE IT HIT ME... MY BROTHER, WHO IS A DOCTOR IN TEXAS AT SCOTT AND WHITE, HIS NICKNAME IN HIGH SCHOOL WAS "MOOSE". I DID NOT THINK OF THAT TILL THIS MORNING. HOW STRANGE! I WILL NEVER SEE A MOOSE ANYTHING ANYMORE WITHOUT THINKING OF MAXIE AND ALL THE MOUSSES.

PLEASE SAY SOME EXTRA PRAYERS FOR CHRISTY, ROBERT, CHRIS AND ME TOO THIS WEEKEND. SAY A PRAYER TO GOD TO TAKE HIM HOME QUICKLY AND NOT TO BE AFRAID.

I COULD NOT HAVE DONE THIS WITHOUT YOU.... AND ROBERT WILL ENJOY AND LOVE EVERY TOY AND THINGS YOU SENT TO MAXIE...(IF I LET HIM TOUCH THEM!) THEY WILL NOT BE WASTED.

CRYING.. CANNOT TYPE ANYMORE..

---

FRIDAY, MARCH 27th ***** 10 AM *****

Morning, Christy called and said he is sleeping well. White count back up to 42,000. They are turning him so some the the gas might move. I kept Robert home... to be with me. We are going up in a little while. Christy and I both slept about 4 hours. Wish I knew more about this junk...!

THIS IS WHAT HE HAS IN HIS BLOODSTREAM.... I DO NOT HAVE TIME TO READ MUCH ABOUT IT...

"In rare cases the candida fungus may invade the bloodstream through an intravenous (IV) tube or urinary catheter used in hospitalized patients. If the infection travels to the kidneys, lungs, brain, or other organs, it can cause serious systemic complications, but these develop only in people who are seriously ill or who have other health problems that weaken the immune system, such as drug addiction or diabetes."




THURSDAY MARCH 26 MIDNIGHT
What a nightmare this is. Christy called looking for me while I was in my doctors office. By the time she found me she had already called the school to have Robert taken care of after school. Called her Dad to come to the hospital. Then she finally got me. "You better come NOW! He cannot breath! They are going to put a ventilator on him NOW. HURRY!"

I was an hour away. I drove the whole way screaming and crying I hardly remember getting there. When I did... they had him on the ventilator, naked,with the door open, doing X Rays on him. The hall was full of people. His nurse from the clinic, nurses from the regular floor, Chris, Christy, the hospital pastor, and several others... Everyone hugging and crying... He was asleep. They put him out to put the ventilator on and are keeping him sedated to keep him from pulling the tube out. They did an ultra sound also and it showed that his stomach and intestine are extended with gas. Gas created from the bacteria and that is pushing up on his lungs, making it so hard to breath.

The doctors talked some and then talked to us. They think we should wait a few days to see what happens and not make any decisions right away. He is in no pain. So far his heart and brain seem fine, so just give the antibiotics a few more days.

Oh... he finally messed.. after 4 weeks.. that should make anyone feel better!

It is 12 midnight and I just got home. They will only let one person stay in ICU with someone. Chris and Robert are asleep in my bed. I think I will sleep in the chair down here in the den with my clothes on. Just in case...

Julie (Maxie's Grandmother)

Thursday Noon:
No news this morning. I woke up crying again. Christy called and said they both slept good.. and they put an oxygen mask on him to help his lungs. He hates it....
He grunts all the time now.

I am going to warn you ... I do not think I can write much longer. If... if this is the last few weeks and if.... if he does not get better for a while.. I do not think I want to write the last few weeks down.

I have a doctors appointment today that I cannot miss. I have missed 3 already so cannot go into Richmond. We are planning to switch tomorrow so I can be with Maxie and Christy can be with Robert and puppies.

Again while I am thinking about it. I want to thank you for all the support. I have stacks of cards, envelopes, and addresses that I need to send real thank you's to, but have not had time. Please forgive us. I also want to thank our friends that just came over Sunday and cleaned my whole house. How they did it wilh all the mess, toys and junk I do not know. It was like a vacation to walk in and just relax. Love people that just do things... that see or know we do not have time to do right now.

You will have a place in my heart forever...
Julie Lagourney
(Maxie's Grandmother)

---

Wednesday, March 24, 2004 Evening

Sorry I have not done an update till now, it is 10 PM. I went to the hospital to see Maxie and take Christy clean things. I stayed a few hours. When I left I thought I would not make it to the van so I could scream and cry. I then proceeded to cry all the way home. I called Chris crying (like he could do something)! I stopped crying long enough to drive through Taco Bell and get Robert something to eat then cried another 30 minutes to Amelia.

Maxie looked so bad. So small and weak. Christy said it was all the drugs he is on! She called me not long after I got home to tell me after I left they got him up in a chair and took him for a ride in a wheel chair to make him sit up. He had a rattle in his lungs and they want him moving. His doctor wants him back to the main floor soon. I think they baby him to much in ICU...lol

Tonight they put a morphine pump on him so he can do his own pain control. They said after a few days they usually use less. Think no more Demerol after today. I hope so! Hate that junk!

They are still excited about his stomach noses and he even had gas while I was there. He drank and drank Dr. Pepper.. they should cure him. Well, I am very very tired. Going to bed.

Love the map idea.. that would be fun for Robert. Also whom every sent the pot roast from Omaha Steaks.. Robert loved the dry ice.. We played with it over an hour. He had never see it. Also thank you for the food, Christy will love it this weekend when she comes home to be with Robert. NO COOKING!

Night all... love you.. Julie


Wed. Morning:
Well, not much to say. His counts bottomed out so they gave Maxie blood late yesterday. They are keeping him knocked out while they give this very strong antibiotic. He has 2 more days of that so he will be in ICU at least 2 or 3 more days. Strange thing... Christy said they keep listening to his stomach. They said it is making sounds like it is working!????? Remember he went in the hospital 5 or 6 weeks ago because of fever, upset stomach and red streaks from his port? Well, what if... what if.... the big thing in his stomach, that is not acting like his cancer is..... fungus or infection.... My last hope...

Anyway... Maxie is stable and Christy finally slept all night. They came in and put up blinds on his door so the light in the hall would not bother him.. Then they asked him what else he wanted and he said a fan... in a short while he had a fan... Now this is a $3,000,000 new, less than a month old, unit... (With no mirrors in the bathroom. Come to think of it.. the way Christy and I look right now, that might be a good thing!) They are spoiling Maxie so much in ICU....

Are your lives a mess like mine? I always wonder if everyone has something wrong almost every day, every week... most of the time or is it me.. or is it all I see...LOLOL Last night about 10 PM, Chris got home from work. I was on line talking to Sharon ... and he walked by with his arm up and a big bandage on it. He was installing a battery (Autozone and Advance both do that, and it is stupid!) and his watch touched the cable and the electric shock burned his arm and welded his watch band. He has second degree burns... Did he take off a few days... NO... Right back to work.

I am now on my way to the hospital, to feed my big baby and take her clothes; Hug and kiss my little baby a bunch and then come running home to Robert. What a kid... I will have to tell you later about the Zoo game that was given to Maxie and we brought home while he is in ICU... I am starting to worry about Robert... LOL... when I watch him play with it ... scary! Reminds me of the Dallas zoo...lol

Thank you for your prayers. No Tom Hanks yet.. He is out there some where!
Julie (Maxie's Grandmother)

---

Tuesday, March 23, 2004 7:24 AM CST

I PUT UP LINKS FOR ELLEN AND OPRAH BELOW! TOM HANKS IS GOING TO BE ON ELLEN FRIDAY, LETS GO GET HIM! ALSO WE HAVE A HUMMER DEALER THAT IS GOING TO TAKE HIM HOME FROM THE HOSPITAL WHEN HE GETS OUT! THANK YOU ROB CROXTON AT MOORE CADILLAC HERE IN RICHMOND...



Christy called and woke me up! It is 2 PM, WOW! I must have really been tired!

She said his color is very good and heart rate good. Still a little temp but they want that to kill infection. She sounded better!

OH, SHE SAID THERE IS BLOOD IN HIS TUBE FROM HIS NOSE, BRIGHT RED BLOOD! SHE HANGES UP! NOW YOU AND I KNOW THE SAME THINGS AND ARE NOT AT THE HOSPITAL! SEE HOW I FEEL WHEN I GO HOME! DRIVES ME NUTS.. BUT I NEED TO WASH CLOTHES!

She called back and said that his white count is 22.... You should have 22,000! They know the fungus is a very normal port fungus so they are glad they took the port out... and I am glad he is in ICU.


TUESDAY MORNING:

What very bad days Sun. and Mon. were. It seems like they just got worse and worse. Maxie's fever kept going up and up. With his stomach closed, meds by mouth do not do much good and by rectum they did not seem to work much either.

By Monday morning we knew there would be no by-pass surgery now, with his temperature, but we wanted to know what was going on. Maxie was sleeping almost all the time now. They had to take blood from his arm and he didn't even fuss much. Even Christy did not fuss much. They soon came back in and said that his port had a fungal infection and it had to come out ASAP. They already had the time scheduled in surgery for Max so down stairs he went.

Christy went down with him and Rebecca and I sat in the waiting room. When they let us in to say good-by and I saw him, tears just started slowly running down my face. I kept thinking about long ago in late July last year when this started... and how much this little baby has been through. What a bad last year of life. Sticks and tubes and pain... I just could not stop thinking.

They soon brought him back upstairs to his room. Barbara, his nurse, was here and she had assigned Angela to him... (Remember he loves her and she likes him. She is new and never had a patient die and now her first will be one she bonded with...) She did great! We saw her going down the hall once crying but we were all doing that. I got Christy to go back to bed in her chair bed and go to sleep...

His fever was 102 when he came back up.. but soon started to rise. They started the new antibiotic and Packed him in ice. In and out, out and in they both went. Finally he started shaking... I thought he had too much ice... and I went out and got Barbara. Being a nurse, I think she knew ASAP what was wrong, A reaction! A bad reaction!... Doctors were called! I woke Christy! The room filled up with people! Barbara.. Thank God for Barbara, he needed Demerol for the reaction. She called the RX downstairs but they did not have a runner to bring it up. She called next door to ICU, they did not have it. She called the next wing.. They had it.. and off she went running. I was starting to panic. His heart was beating at 250... his temp was 105.... His blood pressure was 150 over 100. I moved all the furniture for the crash cart. I tried to stay out of the way and clam Christy. I knew he was going to have a stroke of heart attack. What to do? No papers have been signed yet. What to do?

The Demerol worked! Slowly very slowly things were coming down. Doctors started leaving. His doctor this week is Dr. Dunn and we kept seeing her pace back and forth up and down the hall in and out of his room. She finally said he is going to ICU. The doctor that does the reactions came and told them all what to do and how to handle things,since he has to have this or another drug to kill his infection.

In a few hours they moved him to pediatric ICU... Fever still around 103 but everything else stable. He looked so little and tired. We all did! The ICU unit is new. $3,000,000 donated by Food Lion. The best of everything, even a flat screen TV... His nurse told Christy she was going to give her time to get settled and take a long shower and she was going to read his file. Christy said that will take you all night. She said she had seen thicker but not so young and in such a short time.

He had another small reaction in the night but Demerol took care of it ASAP. Christy said he is starting to open his eyes.. but is all doped up. His ICU nurse told Christy she had never had so many calls from another unit asking about a patient...Christy said they either love or hate us... and the nurse said, she thinks they love us.. Christy said.. Maxie does that to people...!

PLEASE PRAY... NO PAIN... PLEASE!

Julie (Maxie's Grandmother

---

Monday, March 22, 2004 6:20 AM CST

2:30 MONDAY:

JUST GOT BACK FROM SURGERY. HIS PORT HAS A FUNGUS SO THEY HAD TO REMOVE IT. THEY PUT A CENTRAL PICK LINE IN THE SIDE OF HIS NECK...

IT WILL BE ANOTHER WEEK BEFORE THEy TRY to DO HIS BYPASS, SO HE CAN TRY TO EAT.. DOES ANYONE WANT TO TELL HIM? WE ARE DRAWING STRAWS.

AS FOR HIS TEMP..IT IS 104, HIS HEART RATE IS 148, HIS BLOOD PRESSURE IS LOW... HIS NURSE IS ALMOST STAYING IN HERE. THEY JUST STARTED HIS NEW ANTIFUNGAL ANTIBIOTIC STUFF.. HE IS ASLEEP. THEY SCRATCHED HIS CORNEAS WITH THE TAPE IN SURGERY, AND THEY ARE DILATED.. POOR BABY. HE IS GOING THROUGH SO MUCH. WHAT A BRAVE LITTLE BOY.

I DO NOT WANT TO LOSE HIM... BUT I HAVE ABOUT REACHED MY END OF WATCHING HIM HURT..

CHRISTY AND I ARE BOTH STILL HERE AND CHRIS IS HOME WITH ROBERT. PLEASE PRAY NO MORE PAIN OR STICKS... PLEASE!

MONDAY MORNING EARLY... HAD A ROUGH NIGHT.
HIS TEMP NOW IS 104.2. I AM SURE NO SURGERY BUT MIGHT END UP IN ICU, I BET.

CHRISTY AND I ARE BOTH HERE. SHE IS BEING BRAVE AND I THINK IT IS ME THAT IS FALLING APART. I AM SO SCARED. I AM NOT READY TO LET HIM GO, AM NOT READY TO STOP HOPING...

I WILL LET YOU KNOW SOMETHING. IF WE GO TO ICU...AM NOT SURE ABOUT THE LAP TOP... ?

They are saying they think it is a yeast infection in his port. Have to take his port out and put in a temp one in his arm. They just took so much blood this morning.. I am sure he will need blood today and will say.. I wonder why his counts are down? DUH!!



I HAVE ASK FRIENDS AND FAMILY TO E MAIL ME AND TELL ME A FUNNY STORY ABOUT MAXIE. I AM GOING TO POST THEM HERE SO I CAN PUT THEM IN HIS JOURNAL I AM MAKING.

When I first met you, Maxie was the only one that was quiet and  I  thought he was just  shy. Well, I came to  find out  he  is a soulful little guy, he  talked  to me  only  when  he had something important to say. He and Robert were riding their bikes at the store, remember the gravel pile?   Well he kept going back and  forth over it and every time getting faster and I was getting nervous the faster he got. On his way past me I  said "Be careful". He turned and looked at me and said so seriously "I can go even faster and I won't fall " He was right!

FROM ROBIN WORRELL
MARCH 2004

---

SUNDAY MARCH 21, 2004

NO SURGERY MONDAY AS OF THIS MINUTE, WHITE COUNTS DOWN... I knew they should have done Thur. or Friday... Fever up high and in pain. Sleeping a lot today.


SATURDAY MARCH 20, 2004 9:30 PM
What a day! Lets start with about 1 AM last night. Stupid me! Maxie does not like lights when asleep, and he had just dosed off. I was trying to read myself to sleep so I turned on the little light above the sink in the hospital room... TOO BRIGHT, so I decided to get a towel and cover it just a little. I rolled the chair up against the sink and stepped up. I was reaching ... way up high and the recliner started to roll! Like in slow motion I felt myself rolling and falling. I reached up, but was afraid the light would break. Reached for the paper towel rack.. but changed my mind again... Things were still moving in slow motion... I felt the chair turning over backwards.... I reached now for the sink.... (not the IV pole next to it) & CRASH, BOOOOOM, BLAMMMMM "GRANDMAAAAAAAAAAAAA ARE YOU OK?" I just laid there thinking! Thinking how stupid I must look, how I scared Maxie, if something was broke or hurt.. and most important, except for Maxie... DID ANYONE SEE ME?

NO... I am OK.. little sore. Finger had a little cut, from where, I have not an idea.. We had a great day. Maxie is slowly feeling better. The stent, TPN and antibiotics are working. He played with Douglas, a friend we made at the hospital a few months ago. They have been great to us! They brought with them a video camera to borrow and a big remote control truck for him to play with. Rebecca moved the big chair into the hall and we tied a balloon on the truck and he drove it all around. We put the moose herd on the hall floor so he could drive around something. He had so much fun. When he got tired he closed his eyes and sat back. Then he motioned.. with his hands something? "WHAT, are you in pain?" No, he wanted his YO-YO. LOLOL He showed Douglas how great he is with it. I had almost forgotten how good he does most things. Just one of these kids that rides his first bike the first day. Can hit a baseball every time with either hand. Oh, baby you are so special! What a waste!

Well, his Mom is up at the hospital tonight and Robert is home with me. Chris, Robert and I are all going up tomorrow. I am going to stay all night with Christy and Maxie Sunday night. We are going to play UNO. (I have never played, everyone help me, I want to beat their socks off tomorrow.)

WHAT A GREAT DAY!

It's me Christy I keep getting email from people asking me what we need. We need a video camera. We do not have one. So I think its important to me I mean really important to me to have videos of him and have his voice to listen to.


Good morning! This is Julie at the hospital. We had a very nice night. No problems but just a little pain and still will not swallow or talk.

He signed on my screen name to look up some Pokemon Games on Ebay and then 3 of my friends IM'ed me.... He ended up talking to all 3 at the same time and still reading Ebay ads. He is so smart and types great! I fixed his screen name today so he could go anywhere and do anything.

I told him I missed his voice so then next time he spits.. I wanted him to talk... He spit, smiled and said "I LOVE YOU"... Then Cabal his nurse today came in and he said "Hi Cabal, can I have something for pain?" Of course she said she would since he ask so nicely...LOL

Surgery is still on so far, for early Monday. He should be in ICU for 3 or 4 days. Then when he starts passing gas and things, he can start eating. My guess is that he will be able to go home in a week after. Keeping fingers crossed.

We decided that if everyone that reads his page would just send him $5.00 in a card, we can just buy him his own Hummer...lol (JOKE)

HAVE A GREAT WEEKEND.. JULIE
(MAXIE'S VERY PROUD GRANDMA)

---

Friday, March 19th, 2004

Friday.. 4:30

It is so hard today... I have cried about 4 or 5 times. I am at the hospital instead of Christy. When I got here he looked upset and wanted to know where his Mom was. I told him she did not feel good and did not want to give him anything..
Was I OK? Yes, I would do... Just do!

We got him up and walked to the end of the hall. Great! Then came back and when he got back into bed.. his Mom called. Remember he will not talk.. so he just started crying. Real tears! Then I started crying and Christy started crying. When he stopped I cuddled up and told him again his Mom now has temperature and needs to stay home. Was I OK? Then he started crying and said, I am homesick! I want to go home! Then I started to ball like a baby. Do not think we are supposed to cry around him so guess I am not being a good Grandmother. I told him I would call his Mom and he got almost out of bed... NO, NO I want you to stay! I am homesick for home! OK, so now we are watching "Sponge Bob" and I am on here. So fine for a while. What a day!

Friday Morning:
I did not think Christy was going to make it all night at home last night. About midnight we were both trying to get Robert to sleep in her bed so she could sleep with me in our big king sized bed. She signed on our AOL account at home and said "Someone is on my name?" "Who knows my password?"

She IM'ed them and it was Maxie at the hospital. LOL Grandaddy was watching Will Penny instead of funnies (bad baby sitter) and Maxie was lonesome. He types very well and kept saying he missed his Mom (and me) and wanted a hug. He kept asking when she and I were comming back up. I think if Christy had thought she could have driven to Richmond without falling asleep she would have gone. I am glad she did not, it would have hurt her Dads feelings also! He wants time with his baby too.

Maxie will not talk with the tube in his nose and Sharon sent him a board that he could write on. The nurses did not like the fact we are not trying to make him talk, OH WELL! But anyway he can type, so he and Christy talked a while and then he and I talked a long while too.

When I woke up, Robert was sleeping crossways on my bed and Christy was in hers? I have been taking Robert to school this week because he is so hard to get up. I cried all the way back. It is a wonder I did not have a wreck, I could not see a thing! Well, need to get moving... and get to the hospital.. bye, write later..

Thursday March 18th, 2004 8:00 PM:

SORRY I HAVE NOT WRITTEN ANYTHING TODAY. I WAS AT HOME AND DO NOT KNOW MUCH. CHRISTY SAID HIS COUNTS ARE FINE... AND THE NURSES AND DOCTORS ARE REALLY BABYING HIM. HIS BED IS COVERED WITH NEW ANIMALS.. HE GOT ANOTHER MOOSE TODAY..NO TWO.. AND TWO LAMBS YESTERDAY.. I AM HOPING CHARLIE THE DOG DOES NOT EAT THEM!

CHRIS (GRANDDADDY) IS STAYING THE NIGHT TONIGHT. I MADE CHRISTY COME HOME TO GET A GOOD BATH AND DO HER BILLS AND THINGS. PLUS ROBERT IS GETTING SO BAD, I THINK HE IS TRYING HARD TO GET ATTENTION AND HE IS SCARED I AM SURE.

CHRISTY IS GOING BACK TOMORROW AND THEN I AM GOING UP SATURDAY NIGHT. SHE WANTS TO BE THERE SUNDAY NIGHT FOR THE SURGERY MONDAY. I DO NOT THINK EITHER ONE OF US WANTS TO LEAVE HIM FOR A MINUTE.

HE IS VERY ,VERY WEAK. HE DOES NOT LOOK GOOD AT ALL. I AM VERY WORRIED ABOUT MONDAY. HIS NURSE THINKS HE WILL HAVE A FEW WEEKS OF FEELING VERY GOOD. I HOPE SO!

CHRISTY HAS SO MANY DECISIONS TO MAKE.. MOST YOU NEVER IN YOU LIFE THINK YOU WILL MAKE FOR YOUR CHILD. WHEN, WHERE, HOW AND WHAT.. I HAVE BEEN THERE WITH STAN...SO I KNOW HOW SHE IS GOING TO FEEL AND I AM GOING TO FEEL THE SAME AGAIN.

EVERYONE IS TRYING HARD TO GET TOM HANKS TO CALL OR COME OR SOMETHING.. I DO NOT THINK THERE WILL BE TIME! THE NURSES AND CHILD LIFE AND SOME FRIENDS ARE WORKING ON A LIMO HUMMER RIDE THAT HE WANTS AND ON HIS PARTY ON FRIDAY, APRIL 2. I AM CRYING SO I BETTER GO... GETTING MY KEYS ALL WET. I JUST HATE ALL THE BIRTHDAYS HE IS GONG TO MISS.... I AM VERY PROUD TO HAVE BEEN IN HIS LIFE.

JULIE
(MAXIE LEE LAGOURNEY'S GRANDMOTHER)

---

Wednesday, March 17, 2004 7:36 AM CST

5:30 Wed.
Well, I stayed home to day to catch up on bills and chores. I will never get through all the wash. I was doing fine till I started folding his boxer shorts. Robert wears briefs and Maxie boxers... so I guess it was because they were just his. I started crying and shaking for about 30 minutes. Went to sleep and slept hard for a few hours.

Christy said Maxie is feeling good today...just tired but good. Lots of doctors have been in. Dr. Massey... she was his first at the hospital, when she comes in she cries too. That is so special!

His surgery will be Monday morning. Should take about 2 hours. They will do a biopsy then to see if it still the same type of cancer. They are all hoping it is different. If Rabdo... it is just make him happy and comfortable...



What a day... It was 48 hours long.  My real baby "Christy" is just doing things on automatic.  I have been there I know!   Granddaddy is crying every time you look at him.  When we lost Stan.. he just shut down for about a year.. would not talk about it much or cry much.  Robert is acting the same, so far... It will hit him later.  Me, I think I am going through the numb, got to be strong stage.  I am going to fall apart later also.  I only cried once yesterday when he cried... I cannot stand to watch him cry one tear..

I want to use this time to thank all of you who have become my extended family.  I read the post every day, I really do!  I could not have done this without my journal and CaringBridge.  A few of you have even become true best friends. 

Most of you keep asking what you can do.  I hate to say this.. but really it is simple.  Money, that bad word but it is adding so much stress in our lives.  Christy not working at all now.  The gas going back and forth and the eating out is using up almost all our bill money.   Also the big lump of money at the end of all of this that we all do not talk about is on my mind.   My small family that I have has help a lot and some friends and I will never forget them.  Our car insurance agent... and his church has carried Christy and her bills almost totally through this and
I will never never for get it. 

Please when this is all over.  Please keep in touch!  Again, for the people that have helped with prayers, money and support.. I thank you from the bottom of my heart..


Tuesday Night...

I went to the Sharon Osbourne show web site tonight to email her about helping Maxie to have a great birthday. Well, after I sent the email I noticed that she is trying to find guests who are going through this. If any of you get a chance please go to her web site and submit Maxie's story maybe we can meet Tom Hanks or Adam Sandler or Outkast. But Tom Hanks is the one, maybe she can help with that she is a survivor too. It should only take a couple of minutes. Thanks! I just want him to have an awesome birthday it might be his last and I need this for him.
Love~
Christy

It is noon Tuesday, and I just got here. Christy has been awake all night. He was throwing up and his heart rate was too low.

They are going to take him off a lot of meds and that should help his TPN to go in faster. They are planning surgery Monday to fix it where he can eat.. a bypass. They will do a biopsy then and look to see what is going on. If it is Rabdo spreading nothing can be done.

He has an oxygen sensor... on his finger. When I came in, it was under the sheet and with his bald head he looked like ET! I told Christy and she said last night before he got sick he was moving his finger around and he said.. "I'LL BE RIGHT HERE". She said they both laughed so hard she thought the nurse would come in. I am glad..

Julie (Maxie's Grandmother)
NUMB

---

Monday, March 15, 2004 9:24 PM CST

I went to the Sharon Osbourne show web site tonight to email her about helping Maxie to have a great birthday. Well after I sent the email I noticed that she is trying to find guests who are going through this. If any of you get a chance please go to her web site and submit Maxie's story maybe we can meet Tom Hanks or Adam Sandler or Outkast. But Tom Hanks is the one, maybe she can help with that she is a survivor too. It should only take a couple of minutes. Thanks! I just want him to have an awesome birthday it might be his last and I need this for him.
Love~
Christy (TUES. NIGHT)

It is noon Tuesday, and I just got here. Christy has been awake all night. He was throwing up and his heart rate was too low.

They are going to take him off a lot of meds and that should help his TPN to go in faster. They are planning surgery Monday to fix it where he can eat.. a bypass. They will do a biopsy then and look to see what is going on. If it is Rabdo spreading nothing can be done.

He has an oxygen sensor... on his finger. When I came in, it was under the sheet and with his bald head he looked like ET! I told Christy and she said last night before he got sick he was moving his finger around and he said.. "I'LL BE RIGHT HERE". She said they both laughed so hard she thought the nurse would come in. I am glad..


IT IS LATE MONDAY NIGHT MARCH 15, 2004 WHEN WE WERE TOLD THAT MAXIE MIGHT HAVE 2 MONTHS TO LIVE.

I can not say much more.. no more chemo.. They are going to try to fix it where he can eat in a few days, then I guess it is home.

I told Robert... Christy told Maxie.. and I am telling you.

Good night my friends and family and thank you for the support till now. Please help us all the next few weeks..

Julie (Maxie Lee Lagourney's)
Grandmother..

---

Sunday, March 14, 2004 10:52 AM CST

MONDAY AFTERNOON:

We just got back in room it is 5:30 Monday. They used a camera to do the stent down his mouth, thourgh stomach, that is blocked by the tumor. They had a lot of trouble with it because of the blockage. The stent is in and working to drain the liver and bile, that is the good news, NO BAG on the outside. The bad news... is the tumor and how big and that no food will go through the stomach!

I think a lot of things will have to be decided. What to do to make his quality of life good, what time he has left. Hard to say.. Hard to hear but I think that is what it is. I will let you know as we decide and learn more. Thank you for the prayers today..

NOON MONDAY:

CHRISTY WOKE ME AT 4:30, MAXIE WAS THROWING UP A LOT OF BRIGHT RED BLOOD. I GOT UP AND CAME TO THE HOSPITAL.. NOW WE ARE JUST WAITING AND WAITING AND WAITING. PLANS ARE STILL THE SAME AS FAR AS WE KNOW.. BUT FEEL LIKE WE DO NOT KNOW MUCH. HE STILL HAS VERY HIGH FEVER WAS 103 ONCE THIS MORNING... BLOOD PRESSURE DOWN AND IT IS USUALLY HIGH. I AM WORRIED ABOUT THAT BUT DOES NOT SEAM TO BOTHER ANYONE ELSE BUT ME.


Sunday night:

What a long long day. His sugar is very low.. was 64 when I started home. He was shaking and still has fever.
He is very weak and tired.

Barbara, his main nurse moved us into a better room. Has more room and private. Funny, the nurses and doctor all acted different today.
I will not no any more till tomorrow.

I told Christy I feel like what they are seeing is infection or fluid. Nothing comming out so has to go somewhere! My feeling is that it is not cancer... spreading or changing. I hope that is God telling me, not me just hoping.

Robert is going to stay with friends a lot till this is over or Maxie is home. I remember when I was a child and my Mom was very sick I did that. It is very scary for a child. God bless Cheryl, Susan, Joyce and Rebecca for doing this. He would go live with Cheryl tomorrow, just to go back to school at Spring Run. Both boys miss that school so much. He wants to spend the summer with Rebecca! Anytime I cannot find him when we are home he is at Susans and I never worry about him. God bless what he is going through also.

Well, going to wash a load and go to bed. I will post here tomorrow if or when there is news.. Night


Sunday Noon:

I can just see to type. Do not even know why I am typing but am alone in the hospital and do not want to scream and upset Maxie more than he is. He fever is 102 and his counts are going down. He just through up all over the floor and wall.

Dr. Massey just came in after looking at his MRI. They compared the one a few weeks ago and the Ultra Sound and the MRI yesterday. It is not good. Not good at all.

They are going to put his stent...to drain his biliruben. It is backing up in his gall bladder. But, but that is not the worse. I do not want to even type the words, like if I do it makes it so. The mass is changing! A lot bigger, looks different! The doctor said she is not sure if it is Rabdo.. or a different cancer, or infection. They cannot go in right now and see or do a bioposy because of his fever and counts.

A doctor just came in and said they might do the stent tomorrow. There is 2 ways and they will decide today or tomorrow morning how to put it back in. That should take some of the pressure off his tummy and make him feel better but he does not think that is the cause of the fever? Ok.. so are we hoping that the mass is invected? I try so hard not to look worried or scared for Maxie but I do not have a poker face at all. I am so upset.. I am so mad.. I am so scared for him. I do not want him to hurt but he has to have more life than this. I am thinking us too... I WANT HIM HERE LONGER, BUT NOT HURTING, NOT LIKE THIS.. I so wish I had a million arms around us to hold us up the next few weeks.

Please keep putting him on every prayer list you can.

Julie, (Maxie's Grandmother)
falling apart..

---

Saturday, March 13, 2004 1:33 PM CST

Saturday Afternoon
STILL IN HOSPITAL

Saturday night........

Well, one minute you think he might go home in a few days and then an hour later... they are drawing blood from port and arm, starting strong antibiotics, taking cultures of everything.. Fever up, eyes... dark and sad looking. He just looks so tired and weak.

Christy was just going to head home and spend the night with Robert when I told her to wait and help hold his arm. She had to turn her head.. then leave and throw up in the bathroom... while Robert so bravely held his hand. I looked over and he was just rubbing it so sweetly. I love them both so much!

A week ago I was not sure he would ever get better.. then a ray of hope and now a shower of doom. What a ride cancer is! Up and down and down and up.

This whole hall this week has had very sick kids. All the parents all look so tired and scared. I stopped at K-Mart and picked up a couple of new remotes for the TV's and Christy gave one to the people on the right of us. You can really tell the new people.. with cancer kids.. The father next door was wiping everything down with Clorox wipes.. the room as lots of balloons, they have a lot of company and that look.. oh the look, how did this happen? NO, WHY DID THIS HAPPEN TO OUR BABY? I hope their road is not as hard as ours has been so far! I might not look as scared as they do... but inside I am falling apart.

Sat.. NOON
Maxie hurt again last night. It looks like if he eats anything he hurts. Dr. Massy just came in and talked to us and then ordered a new MRI of this stomach.
They are going to do it today!

More medicine to clean him out. I think they think that is what is wrong... I think it is an effect.. not the cause..

Sat. Afternoon....

Christy went to work and Robert went with a friend for a day. The puppies are guarding the house... oh no! Me, I am tired and have hospital burn out.
This is getting to be to long of a stay.

I will let you know if and when I hear anything!

Julie, (Maxie's Grandmother)
sleepy....

---

Friday, March 12, 2004 6:49 AM CST

FRIDAY 6 PM
Someone has started a ebay auction for Maxie and the family. I was really shocked and happy that people are so generous. People can donate as little as $5. I have added the link below. IF YOU WANT IT TAX EXEMPT IT NEEDs TO GO TO HIS FUND AT WACHOVIA BANK..
(address and account number listed above.)

They have tapered down his TPN and want to do another upper GI soon. I will know more tomorrow. He is really tired and in some pain now.
Christy

8 AM Friday Morning

Christy called at 3 AM to tell me he was hurting bad again. This time he had a nose bleed. She said she had to turn TV off funnies because he could not laugh because it hurt so bad.

I just got Robert on the bus. He is very tired, not getting enough sleep. He does not sleep good unless Maxie is in his room with him or in bed with us...
but he wants us to go to bed early with him.

Robert wants to play soccer! Even when Maxie is not sick it is hard with no father and Chris and Christy working the closing shift most of the time... to get Maxie and Robert to do normal kid things. Anyway, I told him on the way home from the hospital I would balance my check book and see if we could get his soccer supplies today. Then I just stopped at a store I knew had that kind of shoes and went ahead and got the shoes. A 6... wow in the third grade a 6... I wear a 7 or 8 boys... gee he is going to be tall! We looked at shin guards, balls, knee pads but just got the shoes. I felt better. I had just cried all the way from the hospital to where Chris works while he sat there so quite. What are we doing to him?

At Advance, with my eyes all red, Chris walked me to the car.. There was a new motorcycle out front. Big, black and beautiful bike. Chris said it was his bosses. I ask if he would take Maxie for a ride if and when he got out of the hospital, he has never been on a motorcycle, or a plane, train, or a boat. Never race a car from a red light or even drove a car. I do not want Disney or any big thing... just want him to have lived more than he has and not hurt. Please, no more pain!


Someone told me to scream. I remember when my son died, I screamed and cried almost every day for a year driving home from work (on the Dallas freeways). I would put a brave face on at work and by the time I reach my car in the parking lot tears would be running down my face. It does help to scream but only Maxie fixed my broken heart, and now I am not only loosing him but watching him hurt.
I can not do this, I can not do this. I can not do this.

Grandma Julie (Maxie's Grandmother)
venting.....am ok, just venting

---

Wednesday, March 10, 2004 3:50 PM CST

9 PM THURSDAY NIGHT... THEY ORDERED MORPHINE EVERY 4 HOURS ALL NIGHT.. GOING TO HAVE ANOTHER DOCTOR READ THE TEST TOMORROW. FROM WHAT I SAW AND HEARD, THEY LOOKED A LOT AT HIS GALLBLADDER. THEY STOPPED THE LIPPIDS (FAT) ON HIS TPN. HE DID GO TO THE BATHROOM LAST NIGHT SO THE PAIN IS NOT THAT. I SAW HIS TUMOR ... LOOKED BIG AND SCARRY.. MY POOR BABY...

IT IS NOON THURSDAY.. AND I JUST READ WHAT CHRISTY WROTE LATE LAST NIGHT, AND NOW I AM CYRING LIKE A BABY. WHAT A LIFE I HAVE GIVEN MY BABIES... I MUST HAVE MADE GOD VERY MAD OR I MUST BE MAKING DEVIL VERY HAPPY. HOW CAN I FIX ALL OF THIS? WHAT CAN I DO....

Maxie woke up early hurting bad... a 9 on the pain scale. They ordered more test to see if it because of the TPN Lipids (fat) they are giving him. With his bile duct blocked he cannot digest fat.
Hard to gain weight with no fats.
They gave him somthing for pain and when he fell asleep I took a long long shower. When someone brings my pills I will be fine.
I told the nurse to hide all sharp things.. till then.

2 PM... HE JUST HAD ANOTHER BAD ATTACK OF PAIN... HAD TO GIVE HIM MORPHINE TO STOP IT.. THEY ARE BRINGING THE TEST TO HIM, HE IS HURTING SO BAD...

PLEASE PRAY FOR MY ALL MY BABIES TO NOT HURT, TO MAKE IT THROUGH THIS AND BE HAPPY..
(ps... I REALLY NEED A PIZZA AND DR. PEPPER).

CHRISTY WROTE THIS, LATE WED. NIGHT...
It's late and everyone is asleep both dogs too. Tonight laying in bed I told Robert sleep is the best thing in the world it makes me happy. We kept talking to each other about what makes us happy. I said seeing Maxie happy and feeling good makes me happy. Not another word was said. I got quiet and listened to Robert silently cry himself to sleep. How painful that is as a mother.

Ok my life is financially a total wreck and my career that I don't know what it was actually is to the side when my boss really needs me. And my Mom is at the hospital with no pills and my Dad is missing my Mom and now my baby is sad and misses his brother.

Ok if there is someone listening to us at all times can I make an emergency break thru? Can I get some relief please! A million dollars and a cure and some peace! Not in that order. Are we saving him to live a month longer? Is this really what is best for him? So cancer is taking him away, me into financial bankruptcy and my Mom and Dad into a stroke from worrying? I use to think my life was bad and I would watch the St. Jude commercials, and say I don't have it so bad after all!
NOW I AM ONE OF THOSE COMMERCIALS!!!!

Christy (scared very very scared)


LATE WED. NIGHT

Well, here I am, still sitting in the hospital. Maxie just fell asleep a second ago. Wonder if I can get the remote out of his hand...I am so tired of funnies (even Sponge Bob)!

I am lost on the plan for Maxie... They are just now giving him another blood.. it just got here. Counts going back down and too soon after chemo for that to be the reason. He gained 2 lbs. since coming in, on his TPN but having trouble with sugar levels. He hates getting his finger stuck so I told them I would just not pay the electric bill and go buy on of the new test kits you can use on the arm not the finger. They do not seam to care.

I am about to tell them no student nurses also. I did not like the one we had today and they just do not know what they are doing. She was real bossy and I was not in the mood.

I will change to something nicer. Last night another stranger from Caringbridge brought us food. Maxie ate just a little first and then I finished every drop. It was so good !!!! Christy has not felt good so still at home.. She has found out you cannot rest at home either. Why do people think housewives do not work when at home? She has been trying to train the puppies also...LOLOLOL

Christy called early this morning to tell me Maxie's girlfriend moved! Does anyone want to tell him? They have been friends for 2 years. The good thing is that if he goes to school next year.. it will not be so hard to get him to do the 5th grade again. Christy and I have talked today about that.. He has missed so much and will be so small, it might be better to just take it again.

Well, the blood is here and we have to watch him for reactions so I better go... and the Mooses need to be walked! Sorry I do not know more..

Julie (Maxie's Grandmother)
tired, hungry, dirty, and mean...

---

Tuesday, March 9, 2004 1:40 AM CST

I AM AT THE HOPITAL, IT IS 2:30 AM.

WHAT A LONG LONG DAY. I TRIED TO CLEAN HOUSE A LITTLE BEFORE I CAME UP HERE SO CHRISTY WOULD FEEL GOOD WHEN SHE GOT HOME. I WAITED TO PICK UP ROBERT SO HE COULD RIDE HOME WITH HIS MOTHER… WHEN I GOT HERE CHRISTY WAS UPSET..

SHE HAD OVER HEARD THE SURGERY GUYS IN THE HALL TALKING… SHE HEARD THE WORD LAGOURNEY AND TRANSPLANT….. LONG STORY BUT SHE CALLED AND BARBARA HIS NURSE CALLED DOWN TO TALK TO SOMEONE ASAP…. ANY WAY, AFTER SHE GOT EVERYONG UPSET AND INVOLVED….(GOOD FOR HER) HERE IS WHAT THE PLAN IS, READY….........

GOING TO SEND HIM HOME SOON ON HIS TPN…. WANT HIM TO EAT AND SHIT…. AND GET SUGAR LEVELS UNDER CONTROL. TPN MESSES UP YOUR SUGAR… OK! THEY HOPE THE CHEMO CONTINUES TO DISSOLVE OR SRINK THE TUMOR. AS IT DOES.. IT HAS THE MAIN AUTUARY TO HIS LIVER GOING THROUGH IT… THEY STILL CANNOT OR WILL NOT TRY SURGERY AT THIS TIME BECAUSE OF IT.

IF AND WHEN THEY DO… THEY FIGURE THE LIVER WILL BE SO DAMAGED MIGHT AS WELL GET A NEW ONE…. SURE…. FROM SEARS OR WAL-MART???

I AM UPSET. DO NOT UNDERSTAND. AS IT SRINKS, IT IS CHOAKING THE INTESTINE… HIS BILE DUCT…. HIS BLOOD SUPPLY BUT LETS WAIT AND SEE…. SORRY! I KIND OF THINK THEY ARE HOPING HE GETS STRONGER FIRST.. MAYBE THE WAIT AND SEE THING IS NOT MY BAG, AND WHILE WE WAIT LETS CONTINUE CHEMO… STARTING TO HATE THAT WORD..

SO HERE I SIT… HE LOOKS BETTER. HE IS WATCHING SPONGE BOB AND HE LOVES SPONGE BOB. HIS ANGEL SHARON SENT HIM A REAL, SIGNED PICTURE OF DARREK JEETER. WOW!!! WANT TO BET IT IS IN CHRISTY’S ROOM. WONDER IF MAKE A WISH WOULD GET HER A DATE WITH HIM. PEOPLE USE TO TELL HER ALL THE TIME MAXIE LOOKED LIKE HIM.

I WANT TO THANK YOU THAT HAVE SENT US GAS MONEY, IT HAS HELPED SO MUCH. WITH 3 OF US DRIVING FROM AMELIA TO RICHMOND, ALMOST EVERY DAY AT OVER $1.60 NOW, IT HAS BECOME OUR BIGGEST EXPENCE LATELY. FOOD AT THE HOSPITAL RUNS ABOUT $20 A DAY AND THAT ADDS UP FAST, IN POUNDS AND MONEY!
WELL, I AM SURE HALF OF WHAT I SAID IS WRONG. I WAS IN THE ROOM WITH MAXIE WHEN CHRISTY TALKED TO THE DOCS.. BUT YOU NOW KNOW WHAT I KNOW. PLEASE KEEP MAX IN YOUR PRAYERS.

JULIE (GRANDMOTHER OF MAXIE)
JUST STRESSED OUT… WHERE IS MY XANAX…..?

---

Monday, March 8, 2004 0:37 AM CST

It's me Christy! I am up and it's late. Actually Maxie is sleeping in my little pull out bed. He loves it and said he is comfy. So while he was sleeping I took pictures of him while he was asleep. I think he was dreaming about me, because he was smiling.(NO, HE WAS THINKING OF ME, GRANDMA, LOLOL). He told me "Momma lay in my bed where it's soft". Just love him, he and Robert, they make me feel so good.

Robert and I had a nice time going out to eat the other night at Mario's. There is a waitress there name Frog, she treats us so good and helps us get money in our jar up there. That is what we use for gas and snack money. It comes in so handy and we appreciate it. There is also a lady in Amelia I have gotten a letter from and haven't had a chance to call her she is so nice to think of us while going through her own things.

It's funny I feel like an old pro here. There is a boy in the next room who was diagnosed a week ago with ALL and I recognized the look his family had. I felt so bad and told his Dad I understand what is feeling. And he was telling me how they called him in a seperate room with a chaplin to tell them. I remember the doctor at the ER who cried as she was telling me of Maxie's large mass. I was so concerned about her and asked if she were ok. How funny I remember breaking down but having to walk twenty feet across the ER and put on a happy face for my child, who would never be the same.

So its all surreal to me now. I walk around the hospital like its a home away from home. And feel like the nurses are my second family. They know my personality and when I am grumpy and tired and worried. I am so glad we are here at this hospital and not anywhere else. It's all so stressful but when my favorites come in and say, "I am yours for 12 hours" I am so glad and can't wait until his IV beeps so I can talk to them more. There is a nurse I have recently gotten close with her name is Dawn and I can talk to her forever. She is great. I told the nurse today that if they stick his finger for sugar the can't give him a shot of Nupogen sub Q. Only one shot per day! The finger sticks and the crap he drinks is enough. He is drinking phosphorus (spelling) cocktails...hee hee. So he goes through enough. And just to get a few crackers to stay down is a amazing in its self much less drinking nasty crap. He threw up blood today that was scary. His sugar was high too and still no BM yet. Man will it ever end.

I miss home and my bed and pupies. I miss my Mom just like Maxie needs me, I need her. And we have fun most of the time she is so funny. She is an awesome inspiration to me and she is so strong and has been through so much. When I was telling someone of my kidnapping and my brother today I was like my poor mom. I never think of poor me, just poor her. So Mom when you read this I love (crying) you so very much you are my best friend and nothing is possible without you. Thanks for taking care of my baby Robert he is such a smart little character.
(Who would of thought).

My dad takes over the father stuff sometimes. He is such a teddy bear. I can't imagine where I would be since I am a single parent without them to hold me up. (He fixed your commode at home today, it only took a little over a year...lol).

Anyway enough enough, Maxie is awake channel surfing. I think he surfs so fast I will get a seizure. (smile)
Love to all the people who bring me goodies from out of town and in town. I still want pot roast. Ever had Cracker Barrell roast beef? Wow was it good..thanks!

Christy (Mom and homesick)

NO, I love you more............& MAXIE, I LOVE YOU MOST OF ALL BUT DO NOT TELL ANYONE ELSE....lolololol.

Love Grandma Julie
(awake at 3:30 AM)

---

Saturday, March 6, 2004 6:24 PM CST

**********************************************************************
How much would you pay for a smile? How much would you pay to here a voice that you have not heard in a long time or will never here again? After my son died... I remember missing his smell. I had a shirt of his in a plastic bag for 15 years trying to keep that smell. A few months ago I washed it and gave it to Maxie to wear. The first day he wore it he got hurt and got blood on it. I was so upset but I am not now, because he was playing when he got hurt.

Yesterday, I saw Maxie smile once. I have not heard him laugh in weeks. I am already forgetting the sound! His room does not smell like him anymore. His bike has flat tires and has no one cares. His smile yesterday, let me tell you why. A Fed-X box came to his hospital room. Christy ask me to open it for Maxie. Inside was another moose.. It was dressed in a hospital gown. It had its own little medical bag with medical toys to use on "Maxie Moose" I saw Maxie's eyes get wide and he slowly sat up. He got out the medical stuff and gave it a shot and took its temperature .... and then he smiled. It was a great smile. Whom every sent it (form NY) thank you very much. We love "Maxie Moose".
What is a hurd of moose called?

Christy called last night telling me she was eating real food. Someone from here in VA had read on here she wanted real food. Strangers, just walking the long long hill to the hospital, up the yucky elevator's, sign in with the guard to bring Christy real food. I cannot believe how nice some people are. She was so happy. They told her to bring to boys to see them when Maxie gets better and I think they meant it!

I need a favor! If Maxie is still in the hospital April 3 rd, I want ideas for a birthday party. He said that he wanted a party for his birthday. I know how to if at home and his white count is OK,
but I do not know how if still in the hospital.

Dr. Russell came in today and talked to Christy. He said they are all going to meet Tuesday with the surgeons and talk about Maxie. He said Maxie is a fighter... we know that..
but to me he looks like a candle slowly going out.
They better hurry.

Now, today... Christy just came home to get hair cut and take a nice long real shower. We sent Granddaddy to the hospital to sit. Maxie just called looking for her. He said he was worried about her. He is so sweet. I had sent her to the store and the PO box with Robert. They are stopping to pick me up something to eat. Robert is going to ride back to the hospital tonight and ride back with Chris. I will be alone for a few hours. I do not care...
I just miss my baby..

---

Friday, March 5, 2004 7:00 AM CST

FRIDAY NIGHT

WHAT A STRESSFUL DAY. I THINK CHRISTY HAS BEEN AT THE HOSPITAL TO LONG. AFTER CALLING ME THIS MORNING AND ME FREAKING OUT.... I WENT TO SCHOOL AND PICKED UP ROBERT AFTER LUNCH AND WE WENT TO THE HOSPITAL. I FIGURED ROBERT COULD KEEP MAXIE COMPANY WHILE CHRISTY LEFT THE ROOM AND FELL APART.

SHE WAS ASLEEP WHEN I GOT THERE... MAXIE LOOKED SO SMALL AND WEAK. WE ALL TALKED A WHILE, (I did not want to run over and look at his lump and upset him more.) ELIZABETH, A PHYSICIANS ASST. CAME IN AND LOOKED AT HIS SHOULDER.. SHE AND I BOTH THINK IT IS A PULLED OR INFLAMED MUSCLE... HE IS SO AFRAID HIS PORT WILL COME OUT..HE HOLDS HIS HEAD FUNNY. HE HAS SO MANY TUBES RUNNING IN IT.. IT MIGHT BE CHEAPER TO HIRE A PLUMBER...

ANY WAY, HE IS GETTING A ROUND OF OVERNIGHT CHEMO (HE IS IN THE HOSPITAL ANYWAY). THE CT SCAN LOOKED GOOD WE WERE TOLD....YEA...................

I WILL TELL YOU THE REST TOMORROW.. NOTING BAD.. JUST LONG.. NIGHT.. I HAVE A STRESS HEADACHE...

FRIDAY MORNING..

Christy found a lump on his shoulder. It hurts.... They just called the doctor..

Christy called back and said wait. I was going to bring Robert up to the hospital so I am going pick Robert up at school later and then go up.

I am upset.. I want to say to any parents that have a child that has just been diagnosed, to make every day count. Go have fun on every good day. You never know how many you have left. Maxie has not had that many good days since this started and I am mad a hell! I do not want him to hurt. I do not want him to be sick from treatments that are not working. I want to see him smile as many smiles as he can.

I cannot do this, I am not ready to do this. God, oh please.. please.


Julie
Maxie's Grandmother

---

Thursday, March 4, 2004 6:50 AM CST

Thur. Evening

If I get something wrong it is because I am sleeping so much I might just be dreaming half of what I think!

The surgeons came in again to look and ask more questions, like when was his last CT and MRI's, does it hurt.. yes if you push on it.. DUGH! I am just worried he is to weak to have surgery, but they do not want him to not have food in his disgestive track because it forgets how to work (simply). We are between the rock and hard place. My guess is they will have to go in.

I went to the Dr. Sandlin, she said I was sick...lol Did test for strept, neg. Told me not to go to hospital and then she ask if Robert got sick yet, and I said no but he will. I will never be able to go see my baby. I am going nuts! (SHORT TRIP) Christy needs clean clothes so I have to get up and move around.

Please pray for Maxie... Please! He is still fighting and I am not ready yet. (Oh, hell, starting to cry.)

Noon Thru.

Christy just called and woke me up. She said the surgery team was there. I guess the doctor came yesterday and she was asleep so did not tell her they were coming. Maxie' s nurse ask they why there were there... and looked mean at them...LOL One of them said because he has a mass in his tummy... (talking down)! She said he has had it since July and you have not been here. Christy said they are getting very protective of Maxie.

I do not think he felt like eating yesterday. Felt sick to his stomach all day but did not throw up.. He sounded down, and did not smile much. His Granddaddy took Christy clean clothes and got one little smile before he left. He could not touch him because he is still sick.

Christy just called back and said someone ate most of her pizza that she had left from a party she and the nurses had the other night. The patients have a room with a refrigerator and microwave and food is always disappearing! Yuck... Christy's, friend Rebecca came up yesterday. I am so glad. You will never know how gald I am.

I will let you know what they say... I am going to call or family doctor and say I need to be well TODAY! I have so much I need to do, about the fence, the laundry, puppies and I want to be at the hospital... I am going nuts.

Julie (Maxie's Grandmother)
sick, so sick.

---

Wednesday, March 3, 2004 8:51 AM CST

I AM SICK SO NOT GOING TO WRITE MUCH... Maybe Christy will write more later. I think Robert might me getting this cold of Chris's too... GREAT!

They let Maxie eat just a little yesterday and so far it stayed down. He had a bath, brushed teeth, went to the bathroom..(you wanted to know that, right!) That is about all I know so far today.

THANK YOU FOR YOUR PRAYERS AND SUPPORT..
JULIE

---

Tuesday, March 2, 2004 6:27 AM CST

Tuesday afternoon......

Maxie got to eat some sherbert.. YEA...
Christy is trying to get Ukrops Grocery to bring her mashed potatoes. LOL I think she is craving carbs. Robert is wants Oatmeal... what a family..

Everyone is gald that Maxie is mad. That say that means he is fighting and is good. Dr. Russell said no results from CT yet! Christy has been sneaking on here writting things and correcting my spelling. Caringbridge needs spell check! Robert and I are writting sentences with words from Dr. Seuss.
If his teacher only knew how bad I spell!

Well, though venting.. bye..


Tuesday Morning......

Christy called a couple of times last night (& woke me). She said Maxie hated her and was mad because they would not let him eat. He was mad that she would not let him download a game on line on the lap top (not a free game). They had changed residents as of yesterday and the new one did not want to wake Dr. Russell so they could order him something to relax him. I thought I was going to have to drive back to Richmond and take them both a xanax. I told her to call the doctor on her cell phone...lol. I went back to sleep and tried to find that dream I was having! NO, about a hour later the phone rang. Christy is getting mad..... She is so tired. No sleep the night before any. Only a few cat naps yesterday. She wanted to know the name of the drug and what doctor and ordered his pills for home to relax him. They said that they do not think any of the team had! Dr. Massy... did! I gave up... awake now.
Had my nap and decided to watch TV.

Then I had a bad bad dream.... the puppies woke me up a few minutes before the alarm went off. They were barking and playing chase all over the place. They had and moved every shoe, torn up every piece of paper they could find, messed a couple of places.. and of all the nerve....THEY WANTED ME TO PLAY! I put them outside, with there food.
So here I sit... trying to talk Robert into getting dressed... to eat, to brush teeth, to comb hair, to find homework...(hope that was not the paper). Robert just drank my coffee! BRB.... HE IS NOW CRYING, HE IS TIRED DOES NOT WANT TO GO TO SCHOOL... BRB Just caught bus.. washed face with baby wipe.. do not know about teeth or hair.. gee what a good mother I am being..
Gave him a big hug and told him to stop waiting up for me.

Well, I need to get going. I need to find 2 cheap tires, take puppy to the vet, go to the bank, and then do my normal things at home too. I will let you know if Christy calls.
Do not call her or IM her for a few days.... SHE IS VERY MEAN......DOES NOT WANT TO TALK TO ANYONE. WORRIED ABOUT MAXIE, WORRIED ABOUT BILLS.. (She should worry about how I am taking care of Robert!) I will make her go home tonight or tomorrow.. so I can go cuddle and rest...

Julie
(Maxie's Grandmother)
Now where is the xanax..

PS: I do not have time to read forwards, and jokes right now... I love your real notes and letters but nothing else please!

PSS:FROM CHRISTY!
If you come to the hospital no sickly people and bring food I am so hungry for food that is not McDonalds!
Mashed potatoes gravy pot roast...lol~Christy

---

Monday, March 1, 2004 4:40 AM CST

MONDAY AFTERNOON

I am so glad I went to the hospital. His color is better and when he woke up his sat up and said, "I am hungry, when can I eat?" He then got the computer and signed on line.. He was playing games on it almost the whole time I was there.
Then he cried because he could not eat yet...

They had not done the CT of his head while was there but the doctor did come in and say...he thinks when his tumor shrunk it blocked his digestive track. The food cannot go down so it comes up..
That is what he thinks is going on..

Maxie still has very very low white count, not sure why? He does look better than Sat... so keeping fingers crossed that he goes up not down from here. The GI doctor was going to look at his test and then talk to Maxie's team.
His white count is to low for surgery.

Christy is very very tired.. not sleeping..
going to leave her alone all night unless she calls me...
she just wants to cuddle him and sleep, so I am going to let her.

MONDAY MORNING

I DO NOT HAVE MUCH TO SAY. HE IS NOT GOOD. MAXIE HAD A VERY BAD NIGHT. HE THROW UP ALL NIGHT. CHRISTY SAID THEY GAVE HIM LOT OF DRUGS AND NOTHING HELPED. SHE JUST CALLED AT 5 AM THEY GAVE HIM ATAVAN TO RELAX HIM. IT MAKES HIM MEAN SO WE HAD STOPPED GIVING IT BUT I WOULD RATHER HAVE HIM MAD THAN SO TIRED.

I AM GOING UP AFTER I GET ROBERT OFF TO SCHOOL. CHRIS IS SICK SO HE CANNOT GO UP UNLESS HE JUST HAS TO. NOT TO SURE WHAT WE ARE GOING TO DO WITH PUPPIES IF WE BOTH STAY AT THE HOSPITAL FOR A WHILE. LOTS OF FRIENDS HAVE OFFERED TO KEEP ROBERT. MAYBE BRIAN, OUR NEIGHBOR CAN PUPPY SIT. HE HAS 2 VERY BIG DOGS AND MISSY THINKS SHE IS THE SAME SIZE AND PLAYS WITH THEM. THEY JUST LOOK AT HER LIKE "WHAT ARE YOU!".

I WANT TO THANK ALL OF YOUR FOR YOUR PRAYERS. REBEKAH, THANK YOU FOR COMMING TO THE HOSPITAL YESTERDAY. YOU WERE AN ANSWER TO A PRAYER FOR CHRISTY, SHE NEEDED YOU SO.. SHARRON,(AND EVERYONE) THANK YOU FOR TRYING TO HOLD ME UP. I DO NOT KNOW HOW MUCH LONGER I CAN WRITE. I CRY SO HARD WHEN DOING THIS.

GOD, JUST DO NOT LET MY BABY HURT AND GRANDMA MARGRETT, MOM AND STAN YOU BE THERE IF HE GOES..

JULIE
(MAXIE'S GRANDMOTHER)

---

Sunday, February 29, 2004 9:30 AM CST

MAXIE BACK IN HOSPITAL!

I do not know where to start. First, I am scared, very very scared! It was about 4 AM before Maxie was put in a room. Christy called all upset that he weighed 61 lbs. She and Dr. Dunn are going to talk this morning. He again has no white count so no company can touch him or his things. He is throwing up more than he takes in and still has fever. He had 3 IV's before he had to go to the bathroom, and it was so dark. The nurse was testing his throw up and urine. They ran more test and x-rays last night. The only test left I think is his bone marrow. I hope they put him back on TPN today so he can get stronger.

I so wish I had a big family with arms around me now. I am crying as I write this. I do not think I am strong enough to do this. No, I know I am not strong enough to do this. I gave all my strength long ago. Every time I sleep the last few days I dream of things about death, funerals and cemeteries mostly. Strange long dark dreams.

Please put Maxie on every prayer list you can find, and tell God, if he wants him, he will have to come get him.

I did not ask what room. 7th floor still. 804-649-5120, but if you call, do not call till after 1 PM and if busy Christy or Maxie are on line...

12 Noon Sunday
Dr. Dunn wants do do a head CT. She said that him sleeping all the time is a sign it might have spread to the brain. (CRYING) They are starting TPN tonight. They are calling in a GI doctor to see why he can no longer keep food down. I am crying so hard I cannot type.. sorry.
Thank you for your prayers.

SUNDAY AFTERNOON

They started his TPN at about 5 PM. He throw up more this time with a lot of blood in it. He is not to eat anything. They want his stomach and intestin to relax. They have started some medicine to coat his throat so it will not be eaten away. He was watching TV when Christy called a little while ago, but still very tired. Christy sounded good, the nurses let her rest all afternoon. All of them are very worried about Maxie.

We are all trying to not think about the CT head scan till done.. and bone marrow test. We are just saying our prayers.

I know he is on a lot of prayer list and prayers said tonight...

JULIE
(MAXIE'S GRANDMOTHER)

---

Saturday, February 28, 2004 1:45 AM CST

Christy just left with Maxie back to the hospital. He has been throwing up all day and his temp. is still all over the place. His white count was droping on his last test at the hospital.. He should have never came home. He looks so thin.. he did not even care that they were going back! I will let you know what room tomorrow. I am home with puppies (yuck) and Robert. Julie

Friday night:
Well, its me Christy I usually don't write. But I am worried and bothered and we put the lap top in my room so I have privacy now. It is suppose to be for Maxie or us at the hospital, but it is for me when we are home! We were sent home Friday afternoon. He slept most of the way home until we stopped by Mom and Dad's old store they owned. He peeked his head up and frowned at it. I went in and was sad after I came out. It smelled so bad in there and was dirty with smokey curtains and so on. I told Maxie and he mad a sad face and looked at some scenery and fell back to snoozing. That is mostly what he does. Sleep and take about thirty baths a day it seems like. He weighs only 64lbs. and looks like a skeleton, and he won't eat anything!!!! The scary part is you tell him the straight up facts that no noutrition and no Maxie! He says ok and eats two cucumber slices! What tha! Now in a parents eyes, my thoughts are he and is body have lost the urge to fight, but what he doesn't understand I have not! And neither has anyone in our family. And get this, his primary nurse Barbara, we love her, went to Ukrops and got him chicken and wedges and mashed potatoes and he still did not eat. We ate it! We are getting huge or more huge and he is shrinking. I look at him laying on the couch and I just shiver with worry. I look at my Dad watching him, he waited until Maxie woke up until he went to bed. Then Maxie gets in the bath and lets the shower head lay on his chest and trickle over him for 20 minutes. I walked in there and he looked like a mummy! I said Maxie get out now that is dangerous sleeping in the tub! He said I don't want to get out! His Grandma gets up and he says I am going, I am going! He is not fighting the fight! His thumbs up he gives aren't flying with momma anymore!

As soon as we come home and we get another fever and have to call the doc! You can't give him to much Tylenol due to his liver no Motrin at all! Its a vicious circle and I am mad!!! Who in the hell did this to my baby and all the other suffering children? Why not punish the rapists and killers! Heck death row has plenty of folks! I look at him and say I had the crapiest 5th grade year too, but I had a good recovery except for my fat butt! Will he have agood recovery? I am pissed at God right now or the devil I can't tell which one. I can't remember feeling so hepless! I want to scream at the doctors and say fix him damnit! He is so smart and his IQ is so high and he is so cute! Why he is just like my brother cute charming and smart. Stan's life ended early and now punish us again by trying to take my baby! Darn I have been mad since I got home today!

I get these phone calls from people I work with and ask me how is he? Well damn he was in the hospital for a week come see him! Or call the room and check on us! The strangers from Caringbridge do more. Best friends that won't come at all, but if you have money for them they offer to come get it at the hospital, but this whole time never came because the hate hosptials! Now that makes me so angry and realize not to take people for face value. I am broke and have no gas and no more patience for flakes. I like the caring people I have met from his illness more than my so called friends that I thought I had. I know that it sounds harsh but heck it needs to be said and is true!

Now enough negative stuff! Have you ever had an A&W chili dog? Oh my it made me happy today, and we had the nicest lady that apologized for their mistake on Maxies order the other day. We like nice folks now days!

I want to thank Maxies lovely angeles! Kathy and of course Maxie's buddy Sharon! I think he loves her more than us! His nurses at the hospital! Barbara is so good with Maxie and so protective of him. We love her! Cabble I think I spelled it wrong, she is my buddy! I love her. Angela is the best thing that has happened to us through this. She is our light and we feel like she is family. Val is our smart super star! Michelle is our night nurse who lets us sleep without a bother! You go girl! Our clinic nurse Cassandra who has a vibe with Maxie that puts a lump in my throat! She can read his body and his personality so good. And last but not least Stephanie and Missy from the clinic we can't tell you enough how much you are needed. We look for you for guidence. Hey Matt! thanks for the relaxation technique! We don't do many shout outs but I am grateful to these people who strive and want my baby to make it through this. I thank you and I am grateful! (And Roy...)

Please keep up the guestbook entries. We love them and they make our days. And of course thanks for the happy mail! If I have left anyone out tonight I am aplogizing now.
Love,
Christy(mom)

P.S. I almost forgot the most important people Auto Zone who lets me work what I can and has kept listed as fulltime and never decreased my full time insurance! Great company. Get in the zone! Auto Zone!!! Woo Hoo!

---

Thursday, February 26, 2004 6:20 PM CST

MAXIE SHOULD BE HOME TONIGHT...

I am at home, Christy is at hospital with him so I do not know very much. She said it took almost everyone in the hospital to get him to drink the chalky yucky stuff for test. I wish Christy would write and tell about it. They did not do the test till very late so no results till tomorrow.

Dr. Massy and Christy will talk about his TPN tomorrow, after they get test results. Christy said she can put her fingers around his ankle (she has short fingers). If they put him back on TPN I think he has to be in the hospital for at least 3 days to do that. At first you have to be on it 18 hours a day. Then you get less and less as you go along.

I slept most of the day... did not have a good day at all. Lots of problems with a neighbor who does not like dogs or kids and is building a fence all around her yard. The property line was very misled to us when we bought the house and it will almost be at my back door. Even part of our driveway! My neighbor Brian and I moved firewood, bikes and I dug up a tree we planted last year. We still have to move my sons car (Gremlin) over about 5 feet. The storage building we had bought, will be so close to her fence that you will not even be able to mow around it, and it will look crooked! I had 2 fights with her today.. after witch she told me I was crazy... (and I already knew that!)

House a mess. I remember again why I did not want a dog... or puppies. Eyes and face swollen from crying... I cry when mad.. easier than sad. Nothing here to eat, out of cat food, but it is a great TV night so guess
Robert and I will just chill and watch Friends.

8 am Friday:

MAXIE HAD A VERY ROUGH NIGHT. HE HAD LEG AND BACK PAIN. THEY FINALLY HAD TO CALL THE DOCTOR AND GET SOMETHING FOR PAIN. DO NOT KNOW WHAT HE IS GOING TO TAKE FROM NOW ON WITH LIVER DAMAGE? ABOUT 11:30 THEY CALLED AND SAID THEY FORGOT TO GIVE HIM ANOTHER XRAY WOULD THEY SEND HIM DOWN. CHRISTY SAID, NO THEY HAD JUST GOT HIM RELAXED. THEY SENT XRAY DOWN TO HIS ROOM, TOOK 5 MIN.

1:30 FRIDAY....
Christy just called.. he is should be home in a few hours. They did not find any blockage or bleeding! His stomach is so small that it will not hold food so it throws it up. They are going to give him a medicine to relax it. He has to have his chemo and eat before they let him leave today. His counts are back up and they do not know why they crashed. Thank you for your prayers again. Going to take a nap.. yea... bye

Julie (Maxie's Grandmother)
Bad stress headache...

---

Wednesday, February 25, 2004 11:27 AM CST

WHAT DAY IS IT? WE AE STILL HERE IN THE HOSPITAL. HAD A BAD NIGHT. HE FINALLY THROW UP AGAIN ABOUT 5 OR 6 AND WENT TO SLEEP.. IT STILL SMELLED VERY ODD.. NOT LIKE BILE...! THEY ALL TALKED AND ORDERED SOME NEW TEST. SO HERE WE SIT... TIRED, DIRTY AGAIN... WANTING REAL TP AND TISSUE, OUR OWN BEDS.. QUITE AND NO STUDENTS COMING AND GOING. I WILL LET YOU KNOW LATER HOW TEST GO WHEN I KNOW.


CHRISTY STILL HOME WITH A STOMACH BUG... WONDER IT THAT IS WHAT MAXIE HAS???? GLAD TO BE AWAY FROM PUPPIES ANYWAY. CHRIS HOME SO HE WILL MOST LIKEY BRING ME MORE CLOTHES AND JUNK...SOMEONE COME CUT MY HAIR OFF... SHORT!

10:30 PM Wed.. I just got home, Christy kicked me out so I could puppy sit and sleep. Maxie did good all day but they could not get to his test. He will have it tomorrow early. He sat up all afternoon playing the Playstation II of the hospitals and ate a little. That is all I know tonight. Very, very tired, Chris and Robert came and got me so I would not have to drive home alone and Christy would have a car at the hospital. Gas, Gas, Gas, it is so high now. We should all buy tiny little cars. Well, Robert waiting for me.. better go... Night

JULIE (MAXIE'S GRANDMOTHER
PUPPY SITTER AGAIN

---

Tuesday, February 24, 2004 11:32 AM CST

IT IS NOON TUESDAY, DAY 4 IN THE HOSPITAL. HE IS BETTER BUT BLOOD COUNTS STILL DOWN SO THEY ARE GOING TO GIVE HIM BLOOD TODAY. THEY CHECKED TO SEE IF BLEEDING INSIDE, BUT NONE IN ANYTHING. PLATELETS UP BUT STILL NOT EATING AND LITTLE SICK TO HIS STOMACH. LEGS HURTING FROM HIS SHOTS. THE DOCTOR ORDERED ALL OTHER BE PUT IN HIS IV..

HE WILL CONTINUE THE SAME PLAN FOR CHEMO. I THINK HE HAS ABOUT 28 MORE WEEKS. WE HOPE HE WILL BE THROUGH BEFORE SCHOOL NEXT YEAR. THAT SOUNDS NICE.. THINKING ABOUT THE FUTURE.

CHRISTY IS AT HOME SICK! CHRIS IS OFF SO HE IS COMMING UP TO BRING US CHICKEN FRIED RICE AND KEEP US COMPANY. IF THEY DO LET MAXIE GO HOME IT WILL BE LATE TONIGHT. IF, IF, IF, NO FEVER, NO PAIN, NO NAUSA, EATING, BLOOD GIVEN... EXCEPT FOR GETTING VERY VERY STIFF AND DIRTY I AM FINE. LEGS HAVE BEEN HURTING SO HAVE NOT FELT LIKE EVEN WALKING DOWN TO MCDONALDS. I FORGOT TO BRING A CLEAN SHIRT..
SO DO NOT WANT TO TAKE A SHOWER.. BUT MIGHT HAVE TO.

MAXIE GOT A CARD IN THE MAIL WHILE THE DOCTOR WAS HERE. HE RIPPED IT OPEN SO FAST. IT HAD MONEY IN IT! HE WAS SO HAPPY, HE LOVES MONEY. LOL A FEW MINUTES LATER WE COULD NOT FIND IT.
HE HAD HID IT IN HIS SHEETS...LOL

WELL, I BETTER GO SEE IF I CAN GET HIM TO EAT ANYTHING.. SO WE CAN LEAVE... I MISS ROBERT, MY SHOWER AND BED, NOT THE PUPPIES! I THINK I LIKE CATS SO MUCH BETTER. CHRISTY SAID MY CAT "PATCHES" IS CRAZY. I THINK SHE JUST MISSES ME! GRETTA WAS IN TIME OUT YESTERDAY. ROBERT WAS PLAYING WITH HER AND HE TOLD HIM MOM THAT..LOL

8 PM Tuesday, still at hospital. He is now getting more blood, so another 3 hours. He threw up his lunch and then his food Chris had brought him to eat so they decided not to let him go home tonight. Christy sent me clean clothes so I took a long shower and then we had the best 2 visits. A big Lab dog came for a vist. She got up on the bed and gave Maxie a big kiss and then just laid down and made herself at home. The Douglas and his Mom came to visit for the second time. This time we were awake. Douglas brought Maxie Lion King 1 1/2. That is what we are watching now as I write. I love people that have been in hospitals and know how to act and what to bring. Thank you so much. They kept Maxie company while Chris and I got to go get a burger and a real drink. Well, I am going to read my mail and put feet up with Maxie. Oh, Christy is still sick... someone tell her not to eat when you have the _________! OK...

JULIE (MAXIE'S GRANDMOTHER)
DIRTY, TIRED NURSE but clean now.

---

Monday, February 23, 2004 12:05 AM CST

5 AM

Well, I am in a mood! Feeling very sorry for myself and mad at God and life. Why, Why, Why…. This baby never hurt not one thing in his life. He is sweet, smart and beautiful, why him? I sat up a lot last night in the chair watching him breath with tears running down my face.

11 AM

His white count is till zero…. His fever is still going up and down. They will not give him anything for fever unless over 103 because of his liver. The was almost there last night! They called the doctor and he said to wait….. Lets see, lets kill the cancer an while we are there, lets kill that spleen and liver too. He is not eating. He did eat half a donut when I cried.. Great nurse I am! Doctors have not been here yet this morning.

A few months ago when in the hospital for an overnight chemo treatment, we had a great roommate. The little boy was the same age as Maxie so no fights over the TV and his Mom let me talk all night. I love to talk, always have. Well, anyway, yesterday Christy called and said a very nice lady tiptoed in and brought us all the perfect things.. You can tell a person that listens and has been in your shoes before.

1 PM

Roy called me as we were on or way to the ER Friday night. I wish we lived down the street in San Angelo, I am homesick. Last night Sharon, one of Maxie angels call the hospital room. Maxie was not talking! I told him who it was and his face lit up and he talked to her. She lives in Florida and still called. I just love his smiles. Right now we do not see very many of them. Kathy, another angel just sent us some balloons and a bear. They made the room look happier and got another smile. I think everyone has made rounds now… his temp is better this morning but his weight! 64.4 pounds.. He was so upset when they rolled in the scale. They just sent in a nutritionist. She was nice… but I know what is fating, believe me I know! He just will not eat. We fix, we get, we ask and still NO. Do they think we go home and chain him in his room so he cannot eat? That we eat all the food and do not let Maxie or Robert have any?

I called home and woke Christy up. She is puppy sitting. Said she like the new one best today. She is finally coming to us and not hiding all the time. Robert had a field trip at school today so he will be good and tired when he gets home. Well, I am very sleepy and think I will go take a nap with Maxie. Thank you for your prayers. Keep in touch.

6 PM

DR MASSY CAME IN, (I like her)AND SAID THEY WANT TO TRY MAGANIZE TO GET HIM TO EAT. HE HATES IT BUT BETTER THAN A TUBE. THEY WILL NOT USE A TUBE DOWN THE NOSE WHEN 0 WHITE COUNT BECAUSE OF IN FECTION. NO FEVER THIS AFTERNOON SO FAR. THE DARK URNINE IS BODY CELLS NOT HIS BILIRUBEN. THE GREAT NEWS IS... READY

SHE SAID THE MRI LOOKS LIKE THE MASS IS THE SAME SIZE BUT LOOKS DEAD OR ALL SCAR TISSUE...................... NO SURGURY AS OF NOW! THEY DO NOT DO RIGHT AFTER RADIATION, LET THE BODY WORK FIRST, PLUS HE IS TO WEAK. FUNNY, I WANT IT OUT DEAD OR NOT.... BUT OK. THAT WAS ALL I ASK. I DO NOT KNOW IF THEY WILL CHANGE HIS CHEMO SCHEDULE OR FINISH IT. SHE AND I THINK ALL OF THIS IS A CRASH AFTER HIS RADIATION. NOW TO GET SOME WEIGHT BACK ON... AND COUNTS UP.... NO FEVER AND HE CAN GO HOME.

Julie (Maxie’s Grandmother)
nurse

---

Saturday, February 21, 2004 11:33 PM CST

CHRISTY CALLED, THEY MIGHT PUT A TUBE DOWN HIS NOSE FOR FOOD, INSTEAD OF TPN. COUNTS STILL DROPPING.. I AM GOING TO HOSPITAL, CHRISTY STRESSING OUT. I WILL NOT BE ABLE TO WRITE! THANK ALL OF YOUR FOR PRAYERS, WE NEED THEM AND ADVICE, WE NEED THAT TOO. WE ARE GOING TO FIND OUT ABOUT BLOOD DONATIONS AND.. IF YOU COME TO THE HOSPITAL, BRING REAL FOOD...LOL (DR. PEPPER)

Maixe’s temp has been going up and down all day. He and Christy slept most of today... last night was a long night. They are taking his temp every hour.

He ended up so far with 4 bags of platelets. Did you know the resident has to sit there the whole time? She had not seen Maxie for a few months and when she saw him... she cried and hugged Christy so hard. She said he looks so bad. Dark circles under his eyes, skin yellow and HIS WEIGHT!
He has lost 15 percent of his body weight so far.

He was put on the baby ward last night because of his low white count. Had to be in a private room and his ward was full. When his regular nurse came on and came over to see him... she was so quite. She left and then in about an hour they moved him to her ward. (I forgot what room?) She likes him so much. Most... most of the nurses like Christy now too, even the one we had the fight with. LOL

I went to the store and bought about $50 of junk food (Marshmallow fluff) to take to the hospital. Barbara his nurse laughed and said she like it on graham crackers. I took him a big salad (he loves salad) but forgot with 0
white count he cannot eat raw food..

When I left, we stopped a Waffle House because Robert had his feelings hurt that his Mom was not coming home. He is his Mammas boy. We always order a big thing for him and I to share, he eats like a bird, and they told us that it says on the menu that you cannot share food...LOL THIS WORLD. Then the waitress gave him almost a whole can or whipped cream on his hot chocolate. While we were eating, Christy called and said fever was going back up. They were coming to draw more blood and do a culture! That means they do not think they have the right antibiotic, RIGHT? Christy said to go to bed and she will call me if fever does not go down. Hate weekends, no doctors to talk to as much, just the students that we know more than they do and the residents that look so tired. A teaching hospital is something else. You learn quickly.. the students do not know ________!
The nurses do but will not say.

As you can tell I am hyper.... tired, 4 hours sleep in 2 days and house a mess. Puppies lonesome, cat box full, dirty clothes everywhere, and oh that drive to Richmond and back. It was so lonesome at 5 AM last night driving. Watching for deer and cops. I also want to know what happens when you are not home?
GRIMLINS....AND DUST BUNNIES... are every where.
How can your house get so messy when know one was home?

THANK YOU FOR YOUR PRAYERS.

Julie (Maxie’s Grandmother)
Just tired...and very worried!

---

Saturday, February 21, 2004 4:44 AM CST

5:45 AM SAT.

MAXIE IS NOT GOOD AT ALL. HE DID HAVE CHEMO TODAY AND IT WAS LATE SO THEY TOOK HIS BLOOD AND SENT US HOME. THEY CALLED AND SAID HE MIGHT NEED PLATELETS TO WATCH HIM.... AFTER HIS BATH HE FELL ASLEEP IN HIS TOWEL SO CHRISTY FELT HIM... HE WAS HOT, VERY HOT. HIS TEMP GOT TO 103.1. HE HAD RED STREAKS COMING OUT FROM HIS PORT. CHRISTY CALLED THE DOCTOR AND HE SAID TAKE HIM TO THE ER.

WE GOT TO THE ER HIS TEMP WAS BETTER BUT STILL HAD SOME. WHEN THEY FINALLY TOOK HIS BLOOD HIS PLATELET COUNT HAD GONE FROM 30 TO 16 SINCE 3 PM. HE HAD 0.03 WHITE COUNT. HE WAS STARTING TO GET RED DOTS ON HIS LEGS, AND THEY WERE WORRIED ABOUT HIS PORT ALSO. HE WAS ADMITTED AND STARTED ON 2 ANTIBIOTICS AND PLATELETS. HE WEIGHT HAS DROPPED TO 67 LBS.. WHEN HE FINALLY GOT A URINE SAMPLE IT WAS DARK JUST LIKE BEFORE WHEN HIS BILIRUBEN WAS HIGH. CHRISTY HAD TO STEP OUT OF HIS ROOM AND CRY. WE KNOW HIS LIVER WAS DAMAGED DURING RADIATION!

I AM SCARED! HE IS IN ROOM 320 AT MCV, IN RICHMOND, VA. PLEASE HAVE EXTRA PRAYERS SAID FOR HIM THIS WEEKEND. PLEASE, PLEASE.

I WILL POST EACH DAY I AM HOME. THANK YOU ROY... OH, THEY DID NOT HAVE TEST RESULTS TODAY, BUT I BET WE GET THEM NOW!

JULIE (MAXIE'S GRANDMOTHER)

---

Thursday, February 19, 2004 7:05 PM CST

************************************
UPDATE Friday 7/20/04 8:00pm

This is Roy Fiveash, Cheyenne's dad updating the site for Julie. Julie emailed me about an hour ago saying that Maxie was sick and they were enroute to the hospital. I understand that today was Maxie's chemo day, and his platelets were really low. Tonight Maxie started running a really high fever that they couldn't control, so they are enroute to the hospital. I will update more as Julie or Christy calls. Please pray for Maxie and the family a little extra tonight.
***************************************
WELL, WE ARE STILL WAITING ABOUT TEST RESULTS. GUESS WE WILL FIND OUT TOMORROW, IT IS FRIDAY RIGHT? IT IS ALL I HAVE BEEN THINKING ABOUT.

Guess what I just did. I walked over a mile. Robert and I walked way down our street and came back. Our house is at the top of a small hill so was a little hard coming back up.. LOL

Christy is at work, and I am glad. I think she can start working more and more now. One day at a time. Chris and her are both closing tonight so I am in charge. Almost back to normal. They both like to work late and I think they like leaving me to the supper and homework jobs.

Funny, Chris works for Autozone and Christy works for Advance right down the street a few miles. Christy learned about cars because we have always had some kind of parts or repair business. From 1984 till 1996 we owned a business that sold new and used parts for and Chris and Stan built race cars. Chris has messed with hot rods, drag and circle track cars forever. Kind of how we met he liked my Moms car, lol. Christy just picked up a lot more than she realized. Chris worked in a big speed shop in Corpus Christi long ago, where he met the Bobby and Terry Labonte's Dad. I think Bobby was just a little kid driving go-carts tagging along with his Dad back then. I do not think he ever met Terry Labonte but we would all love to. When we owned
Hot Rod Exchange in Dallas we met all the big drag race drivers.
We stayed in the pits at most races. If I was only 30 years younger .....

We are still trying to get permission from MAKE A WISH to take puppy back to the breeder in Ohio. I told the breeder we would be glad to meet half way. I do not think this scared little puppy needs to fly again. She will not come to any of us, even me and I feed her. So sad! If we did not have Missy for her to play with,
I think she would stay hid all day.

Well, guess I better find something for supper and head the kids to baths and bed. It is going to be nice alone for a change. The TV all to myself and my Ebay. I have a few more things to pack up for shipping. Night everyone,
keep us in your prayers for good news.

I still need help putting the links of other caringbridge kids back in, I tried and just cannot figure it out! I lost them all, cannot even get to them to read about.
What a mess I made!

Julie (Maxie's Grandmother)
cook, maid and teacher tonight.

---

Tuesday, February 17, 2004 4:48 PM CST

M R I was done today. No test results. Funny how the first night they told us in less than an hour. The next day he goes is Friday, so I guess we will not hear till then unless Christy calls. I never even thought about them not telling us today. DUGH!

I puppy sat all day and vacuumed good. Glad I did not go, because they let school out early when a snowflake fell. No one would have been home for Robert.

Maxie acts like he feels very good. His mail box at the post office was full of cards and boxes... He was so happy. Thank you... so much.

Well, this is the shortest I have even written... Must be sick..LOL

Julie (Maxie’s Grandmother)
Going to take temperature! LOL

---

Monday, February 16, 2004 10:54 PM CST

There was no school today because of a little snow, and Chris was off so we all slept in. If I had not needed to take the puppies out I might have slept all day.

The boys both went down the street and played all after noon. Maxie's white count will not bottom out for a few days after his treatment, so we let him go. He looked very tired when Chris went and picked them up. He has to get up very early so everyone but me and the new puppy are asleep.

The puppy is not a kids puppy. She needs to be a lap dog for man or woman. We called the breeder in Ohio and we might take her back to her. No, plane rides this time. We will take her or meet the breeder half way. We have to call Make a Wish tomorrow to let them know. Maxie does not care, he can not get near her.

Maxie's test is tomorrow. I am having thoughts running through my mind all day. If gone, do they finish the treatment? If small or gone are they going to try surgery again? How do they tell if it has spread, does he need another liver and bone biopsy? What about the spleen, do they take it out? Will his damaged liver repair itself? If spread.... then what? I am not going to think about that tonight. I saw a movie today about a girl with the same kind of cancer. Funny, even though I cried the first time I saw it, I did not catch the name of the cancer till today.
I just cried and cried watching it again.

I remember after my son died, I could not stand to hear a baby or child cry. NOT ANY! I would just start to cry with them. I am getting that way again. Just one tear from either boy and I just milt. I want no pain or sadness in their lives. Life itself is painful enough and they are already learning that way to young. Might be a good thing I have not money or credit cards, I would be so far in debt buying them things.

I will let you know tomorrow night what happens.

I messed up Maxie's web page and deleted almost all of it trying to delete one litte word. Sorry I lost all the links to other Caringbridge boys and girls. HELP!

Julie (Maxie's Grandmother)
sleepy.....

---

Sunday, February 15, 2004 9:12 AM CST

Sunday morning and the house is all quite. I took the puppies out and started the coffee. I was thinking how 20 years ago I would have got up, turned the stereo or radio on loud to some hard rock and poured a giant glass of Dr. Pepper. Now, I try not to wake anyone, take the puppies out, turn the TV to CNN or the weather channel, pour my coffee if Chris remembered to make it (his only job) and of course sign on the computer as I walk by to start the washer. At least being out of wood I do not have to do that anymore this winter. How my life has changed.

Maxie is up! He did good at the overnight chemo. He got sick a few times and then again right before they sent him home. They gave him something strong and sent him home. He slept all day till 9 pm last night. He was in a bad mood, but I understand that drugged up hangover feeling. He got a coke and then through it up all over the bathroom. I mean wall, floors and rugs. Poor baby! Chris helped clean up while Maxie took a shower and I fussed about having to wash another load of messed up things today. (The new puppy had wet 3 beds.)

Dr. Massey told Christy we are going to find out good news Tuesday! I cannot wait. I think we will both go Tuesday. Good or bad I want to be there with Christy and Maxie. Anyone want to come babysit the puppies and Robert? I am not going to think any bad thoughts today. I might even find an old cassette tape and listen to some good music for a change. Daytona is today also. I love Nascar!

Well, it is going to be a good day, I am going to make it a good day!

Julie (Maxie's Grandmother)
saying prayers for Tuesday

---

Friday, February 13, 2004 4:44 PM CST

Well, I have had such a bad day... I am making myself write this instead of crying.

First, Maxie is gone to the hospital for his next overnight round of chemo. For some reason I am really dreading this one. He is so thin and he really did not want to go. They left at noon and just now called at 5 pm that they finally got in a room. They are alone so Christy is happy. (Wish we had the laptop). If things go smooth they will be out by noon tomorrow. I will let you know later how things go.

Now, what is wrong with me. I have broken out with my shingles or hives all over my back again. I have been doing this every few months for the last 2 or 3 years and they are not sure why or what. First I feel bad a week or so then I just bust out overnight. They are sore and make me feel even worse.

ROBERT GOT HIS REPORT CARD AND HE MADE THE HIGH HONOR ROLL... With all our family is going through I think that is just great. Maxie's real at school, teacher called!!! She said Maxie is catching up great and does great in math. OH, we did find him a book bag on wheels last night at Target... Now, Robert wants one too. Both boys are very smart kids. We were very lucky. Robert had a lot of birth problems.. the cord was wrapped around his neck 3 times and he was a dry birth and we were told he was in the birth cannel over 10 days. We were not sure... how he would turn out, he was the ugliest baby I had ever seen, but look at him how.. smart and beautiful.

Please say some extra prayers for Maxie tonight and his chemo... and next week that his test come out OK.

Maybe say just one tiny one for me...


Julie (Maxie's Grandmother)
just call me bumpy grumpy

PS... MAXIE DID OK LAST NIGHT, ONLY GOT SICK A COUPLE OF TIMES. THEY SHOULD BE HOME IN A FEW HOURS.

---

Wednesday, February 11, 2004 8:29 PM CST

I am sitting here trying to watch 2 TV shows at the same time. The OC is winning! The boys have been fed, bathed and are in bed. We set a record I think this week, they have been in their own beds all night. It is 9 PM and Chris is not home yet and Christy is just now leaving to go to AutoZone to make the schedule. The house is very quite, even Missy is asleep.

Speaking of Missy, her new sister is on her way from Ohio. Susie will be here on a plane at 9 tomorrow night. I called Chris to tell him to stop at Kmart and pick up Maxie a school bag with wheels. He is to weak to carry his books. He is suppose to have 3 sets. One for home, one for school and one for "Tater" his homebound teacher. It never happen, like a lot of things the school said they would do. I told Chris about the new puppy coming an he said great, stop and pick me up at the store on your way. This is the same man that kept saying,
NO DOGS, NO PUPPIES, NO MORE PETS. LOL

Christy just called on her cell phone. Scared me because she had just walked out. She wanted me to come get Gretta off the top of her car. Christy was sitting in her car with lights on, engine running and Gretta was just sitting on top like she was going to ride to town. Kind of like a hood ornament only on top. I went out and banged on the top of the car and she slowly jumped down. Christy was telling me not to hurt her car. LOL Life around here is very strange, right! I got an arm full of wood, AGAIN.
I will be so glad when winter is over! How am I staying so fat?

Well, this is suppose to be about Maxie. He went to school again all day. This is about his 6th day of school this year. I cannot imagine how he feels. I use to feel lost if I was only sick a few days. He looked so tired this morning I almost did not let him go, but he was up and dressed ASAP. You can count every bone on his little body. I am so worried about his chemo Friday night. I want to scream at the doctors that I do not think he is strong enough for a round right now. I think he needs to be on his IV food for a couple of weeks first, but I am just the Grandmother! I remember our family doctor Dr. Sandlin saying she was glad it was Maxie not Robert with the cancer. Maxie was so healthy and strong. Now Robert opens drinks for Maxie and carries his books the last few days.

I hear little foot steps above me. (We live in a dumb tri-level house, never buy one!) I guess I better go get them back in bed, and get me a big glass of water. I am going to try to loose weight also. Water, YUCK! I am going to start walking down our street every day unless, cold, raining, snowing, windy, sunny or a good movie on. No really, I am going to start walking for Christy. Maybe she will tag along.

I have also been busy all day listing on Ebay. They are having another listing sale so the ads are half price. Check it out... (PARTS-AND-PIECES).
Have a great night and say a prayer for all the Caringbridge kids.

Julie (Maxie's Grandmother)
worry wart this week...

---

Tuesday, February 10, 2004 8:55 PM CST

I am sitting here listening to family sounds. Christy trying to get the boys ready for bed so they can BOTH go to school tomorrow. The dog show on the TV. The puppy whining for Christy. Me, balancing the check book and paying bills, trying to get the green wood burning. All normal things in a family but so odd since Maxie became sick. He even had homework tonight! Normal things... I love them.

Maxie looks so skinny. His pants fell off tonight, he has no butt at all. I cannot tell anyone but here how worried I am about him. I wonder if and when he goes into remission do you worry as much as I do today. You never look at them anymore without thinking about it.

My neighbor across the street came over today to tell me that our neighbors house next to him was broken into yesterday. We live way out in the country on a dead end road with only about 10 houses. They took his laptop and some cash. We were all home but Chris and did not see or hear anything. Our street is great usually. When it snowed someone on our street graded all the way up my driveway so we could get out. He did not go into anyone else's drive! I knew it was someone that knew Maxie had cancer and might need to go to the hospital. Most of the kids on our street are boys. Never seen so many boys! There is a stream, woods and lot of little roads to ride your bikes on with no traffic. I just wish it was not 45 minutes to town.
I USE TO SAY SO SAFE, NO CRIME!


Again I want to thank all your you for your cards, gifts, letters, E mails, and prayers.
If we have not thanked you I am so sorry. I can hear my Mom saying,
"Sit down and write that Thank You card right now!" Sorry Mom!

Julie (Maxie's Grandmother)
bookkeeper tonight

---

Monday, February 9, 2004 10:12 PM CST

Robert, Maxie's little brother, has a bad cold. He is such a baby when sick. He is all boy but when sick he just cries at anything. He has started to cough tonight. He took his first real pill yesterday and now wants you to watch him. No water or drink, just swallows. Maxie drinks before he swallows. Strange kids we have!

I slept all day so do not know much of what went on. I need to go see both my doctors. I think either my meds are off or my lupus-fibromyaliga is trying hard to act up. Stress and winter all ways make me feel worse.

I did hear Christy on the phone with the Nelson Clinic. Maxie is going in for his next round of overnight chemo Friday. He has been throwing up the last 2 nights some. I wonder if his bile duct is closing up. His first symptoms were an upset stomach and yellow skin. He is going to have his scans next week the clinic said. I am so glad. I want to know what is going on in his tummy. He wants to go to school tomorrow. That will be strange, Maxie gone and Robert home!

I have had a couple of friends ask when the boys birthdays are. Well they are:

Maxie April 3, he will be ll.
Robert October 26, he will be 10.
Christy April 24, 35 I think...lol

Not going to tell you mine. LOL I feel very old and after watching Oprah turn 50, I feel old and very broke. The rich get richer and the middle class is going down fast.
Scary, very scary.

We have still not heard about the Ohio puppy. She is going to be grown before we get her. I want Missy to have her to play with. We all watched the dog show tonight. That has become a family thing we have done now for years. I can remember my Mom calling me to tell me it was on and we would all run in and watch. I wonder why? The circus came to Richmond today. I had forgot, I wanted to go down to the railroad and watch them walk the animals to the coliseum, down town.
They do that every year here in Richmond.

Please say a prayer for all the Caringbridge and very sick kids. You are the glue that hold some of us together.

Julie (Maxie's Grandmother)
Nothing, just nothing.

PS, I was just thinking, how many of you get to see inside my house with 1970's orange carpet and hand me down eary marriage furniture. That is an odd feeling. LOL

---

Monday, February 9, 2004 0:50 AM CST

I cannot believe how good Maxie has felt the last few days. Having no treatments the past 2 weeks has helped him regain so much strength. Ready for the next 30 or so treatments, I am not sure but we all really did need this break. I will be glad when we know how "IT" is doing and how big. If surgery can be done?

He has lost so much strength that he cannot open most things. His weight is still around 69 pounds and they say he goes back on his IV food at 68. When he does eat, he ask if fattening. He loves salads, lettuce, cucumbers and most things very good for you. I have got him hooked on cookies and milk and marshmallow fluff. His teacher was here today, as Christy and I were putting up groceries Maxie wanted to know if she remembered the Fluff. Mr. Poore ask if he eats it with peanut butter? I have never thought of that! I like mayonnaise and peanut butter, Chris likes peanut butter and bananas but marshmallow fluff and peanut butter? I almost drove back to the store for the fluff just to see if Maxie would like it with peanut butter. I bet just looking at it would make you gain weight!

He and the teacher are studding the Civil War. He is really having a hard time with it. I keep wanted to scream.... "HE IS A TEXAN" but am being good. I am going to rent Gods and Generals again. If he can stay awake through it he will learn a lot about the Civil War. Christy suggested North and South. Anyone have any other ideas. (I am taking him to see the The Alamo as soon as it hits the theaters. LOLOL) What impresses me here in Va., every road around us has signs that say LEE'S RETREAT. It gets to be almost funny when you are driving. The cemeteries have so many Civil War dead buried in them, you just think of all the neighbors, brothers and kin fighting each other. When staying on his floor at the hospital, you look down and the building below you was the capitol of the Confederacy. The hospital is all around it. The man that shot the first shot was from our county and he also shot himself here. Maybe the next few days we should just go ridding around, we live just a few miles from so many things.

Well, It is almost 2 AM and he is waiting for me to go to bed. I better at least go pretend to be asleep. Night all. My prayers are with you all.

Thank you all our angels for the gifts and cards.

Julie (Maxie's Grandmother)
history teacher but Texan

---

Friday, February 6, 2004 9:49 AM CST

I put the angels today in honor of CARLIE BRUCIA...
the little girl in Florida and my Christy.

Maxie and Christy went to the Massy Clinic where he had all his radiation treatments done. They said they could tell from his blood work his liver was damages a little (it that like being a little pregnant!) That his spleen was damaged! Next week the doctors at the Nelson clinic will look at x-rays and will tell us more about the size. He did not have blood work or chemo this week. I am so glad. No sticks. First week since July 23, 2003 that he did not have blood work done. He does not cry... I almost cry when my doctor just sends me to the lab for blood work.
Cancer makes them grow up so fast.

(THIS PART IS JUST FOR ME)

I woke up this morning with Christy telling Maxie it was going to be another short day at school, did he want to go? She then ask me if I had heard? What? They found the little girl in Florida, dead, in a field! My first words were.... "You were so lucky, we were so lucky!" Tears fill my eyes now as I write this. When Christy was 10 years old she was kidnapped by a man and a woman. We got her back! As I look back now it is hard to believe that we did. Most of the time when strangers kidnap little kids... you almost know they are dead and that you hope they were not in much pain. I wonder why as I write this, did God choose to give her live back and then give her so much pain to live with after. Her brothers death, bad husband and father to her children, and now Maxie and his cancer. You would have thought going through the things in the 12 hours they had her was enough for a life time. She was in the hospital almost 10 days. Was told she would never have children but she has 2 wonderful boys. She changed completely, from a tom boy to a woman in a childs body in 12 hours. She and Stan slept in the same room for years after. She wanted her brother close to her, then at 17 she lost him. Now she almost always has one of the boys sleep with her (and Missy). I guess I will stop fussing about it. I will never understand this hand we were dealt, but as for today I am glad I have her and the boys, and it is not us planning a funeral today for our daughter found in a field in Florida.

My God wrap his arms around that family.


Julie (Maxie's Grandmother)

---

Wednesday, February 4, 2004 9:14 PM CST

I know I have said this before but I have learned to love nothing days. We all needed to recharge the last few weeks. The six weeks of radiation every day and chemo weekly was very hard on Maxie's little body. Everything since July 23 has been none stop till now. I think Christy, Maxie and I have slept more the last few weeks than ever.

School started 2 hours late yesterday (ice on roads) so since it was going to be a short day we sent Maxie to school. Again someone made fun of his bald head. It is very bald now! He did not even tell us, Robert told me. Maxie knows we get more upset than he does I think. I ask him how school was and he said he slept most of it. That Amber and his teacher were rubbing his head to wake him up for lunch and said it felt just like a baby. I did not ask him this morning if he wanted to go. He looks so tired. He pouted at me when he did wake up at noon... because I did not wake him.

There is still snow or ice on the ground but finally milting. Am almost out of firewood but tired of carrying it so today I do not care. Need to price a propane insert.

Christy took Missy to the vet to be checked. She had a booster shot, claws trimmed and stitches taken out of dew claws. One was infected so glad she went. De-wormed, and flea drop put on. Today she took her back for a trim and bath to get dead flees off. She was mad at Christy for leaving her. I wish you could have seen her. She really has a personality. No news on the new puppy coming from Ohio yet.

We have GREAT news on Shawntae... Maxie called her tonight and they found 3 matches. Christy told her to get on Caringbridge and I sent her the link. Did you know that insurance will not pay for donors testing? Do you know where she can get help with the money for that? Christy and Maxie will most likely go see her tomorrow when they go to the clinic and see the radiation doctor. I hope they do the scans and tell us what is going on. I also hope he has not lost any more weight, it will be back on the liquid food going into his port.

I have a long story to write soon about having the cat, Gretta de-clawed. I need to write it to vent and put in my journal I am making. For a few of you who do not already know. I was writing a journal. When Christy found Caringbridge, and started posting, she finally admitted she did not have much time to keep up.. she ask me to just take my daily journals and copy and paste and put in here. I also print out and am keeping for Maxie to read someday. So sometime I talk about family things, not just Maxie and his health. Hope you do not mind! This has saved me a lot of trips to my shrink. LOL

Well, I have a small headache (from these rotten teeth and TMJ) so think I will take something and go back to bed. Maybe it is from crying, I have been crying at the drop of a hat the last 2 days. Be glad when winter is gone. I really get the winter blues. Tuesday I fond out my prescriptions I take and some Chris take, are going to cost $50 a shot now. No wonder people stop taking there meds. I told Christy I was going to stop, and she said wait till she moves out.... LOLOL..

Well, Maxie wants the computer so better get off.

Julie (Maxie's Grandmother)
soon to be crazy again..

---

Monday, February 2, 2004 10:48 PM CST

I wonder if our Caringbridge kids get tired of us asking them how they feel? Today Maxie did not act like he felt good at all. He stayed in his room playing his new GameBoy Game (Pokemon Ruby I think). Chris was off and I was making him do some honey do's. I kept asking Maxie if he felt all right and feeling his head. I do not know I feel his head. His very soft bald head is always warm. They told us to feel the body or neck after they loose their hair. I kept saying, "Would you tell me if you felt bad?" I do not think he would! He now knows that means clinic, blood, doctors and test.

Christy did not feel good at all today. She slept most of the day. I am starting to worry about her too. That makes 3 of them I worry all the time about. Robert and the puppy are the only normal things in our house. Someone E mailed me and ask me if I was taking care of me. Yes.. I guess. I do not have time to worry about me.

A hour or so ago the phone rang,...it was Amber! Remember Amber? That is Maxie's girl friend for almost 2 years now. Maxie is not good at talking on the phone and does not do it very often, but he talked about a hour to her. Now Robert, he talks all the time on the phone. As soon as school is out our phone starts ringing.... for Robert.

Maxie's homebound teacher (Tater) Mr. Poore came Sunday. He thinks Missy is great. She barks if you do not play with her. I cannot wait to see what she and the new puppy do together.

Another storm is coming tonight and the snow and ice are still on the ground from the last one. I do not like cold this long. In west Texas, we had snow but it milted the next day, or blew south to San Angelo. Guess I better not talk about Texas, I might start crying, am so homesick.

Well, I better go. I need to take some pictures of Ebay items. I have started listing things again. All the moneys from my sales go into the Maxie Cancer Fund savings account. Ebay also keeps me busy and my mind of cancer and other problems. PARTS-AND-PIECES is my Ebay sellers name, if you ever want to check it out. I have over 40 years of well loved junk to sell.

DID YOU WATCH THE SUPER BOWL? I missed the half time but I heard that EVERYTHING DID COME OUT ALL RIGHT (OR LEFT...) lolololol.

Night all,
Julie (Maxie's Grandmother)
professional worrier

---

Saturday, January 31, 2004 9:33 AM CST

Morning! It is a very nice, very bright sunny day. The sun is reflecting off the ice and leftover snow. Am in a cleaning mood so not going to write much. LOL

MAXIE'S COUNTS WERE GREAT YESTERDAY.

I am so glad no chemo this week. He really needed a break and so did we. After he had his blood was work done, they got permission to go see his friend Shawntey. She is on the donnor floor(10th). She has no white count at all so cannot be touched even by her Mother. She has her own phone and no one can use her bathroom or sit on her bed. She cannot even eat hospital food... (that has to be a good thing). The nurses heat up Stoffers frozen dinners for her. The teacher at the hospital was bringing her a computer yesterday so maybe we can all talk to her and her Mom soon. I am so glad Christy is helping her Mom.

Christy stopped at Wal Mart and bought them a few things that we like have to have when in the long hospital stays. The remote was the first thing. As for me, it is the air freshener with the night light and some kind of great bathroom spray. I guess I think nurses have never smelt "IT" before. LOL The next thing we grab is a big towel. Have you ever tried to dry on a hospital towel. French Vanilla Coffee Creamer for the coffee and batteries for Gameboys. (She had a new one with a light built in that Maxie just loved yesterday.) Bed and bath hand soap that does not dry your skin, and a small flashlight. To heck with plants, balloons... that are great the first time but after that, bring me real food and things to read. Call me and let me know that you know and care that we are in the hospital again. This hospital has a McDonalds so coupons are great also. OH! DO NOT FORGET DR. PEPPER and whatever the child likes to drink. A roll of quarters! No wonder our hospital bag is so heavy. Theses are a few things that friends and loveones can bring most people staying a long time in any hospital, I would think.

Well, this is getting long and I am hyper so need to go clean. Have a great weekend and stop and check on all of the other kids...

Julie (Maxie's Grandmother)
(Maid to Order, today)

PS: I need some help adding links to the other Caringbridge children. Will some one help me please?

---

Thursday, January 29, 2004 6:38 PM CST

Remember the little girl (Shantae Smith) I told you that is in the 5th grade with Maxie. Her Mom just called yesterday and left us a message. Christy tried to call her back but she was not home. Today, Christy took me to get a hair cut.. and we ask where the lady was that had cut my hair the first week that Maxie came home from the hospital. We had stopped to get his hair cut short so I had mine cut also. Anyway, they told us she was not working because her Granddaughter, a 10 year old little girl in Amelia was very sick. Christy and I knew right away who. Sure enough that was the same little girl.

When we got home Christy called her again. She is in the hospital, isolated with no white count from APLASTIC ANEMIA . She needs a bone marrow transplant ASAP. She is mixed black and white with no brothers or sisters. Christy was giving her Mom all the advice she could about where to get help with money and all the things we have learned already, like Caringbridge. After she hung up the phone, she turned and looked at me and said, Mom, I feel so sorry for her. Without a transplant she has zero chance. Then the tears came. Christy does not cry like me. I cry all the time, well I use to till they drugged me up.

If you know some advice Christy can give her, please E Mail Christy and we will forward it to her Mom. I will try to get more information like her name, room number and maybe soon her Caringbridge page. Christy stopped at a little store here and was telling the lady that works there about the little girl, and she is her Aunt. Another customer said, " TWO KIDS WITH CANCER IN THE SAME GRADE IN AMELIA, HOW ODD CAN THAT BE".

Well, school tomorrow, 2 hours late but school, YEA! Maxie has to go get blood counts. He has felt about the same, still very tired and weak. He just looks so pale and tired. I am worrying a lot about what that sneeky cancer is up to. Maybe next time he goes in the hospital, I will have them put a window in his tummy and a food color on all the cancer cells so I can keep track of them. I will make each one check in everyday till I can catch and kill each and every one.

I will find out more about the little Smith girl so you can put on prayer list. Your prayers have helped with Maxie. OH, What should we tell Maxie? If something happens to her, how have some of you handled other kids dying that your child knows? We have been so honest with him... but still I do not think he understands death yet. Oh.. I do undersand either... CRYING... BYE

Julie (Maxie's Grandmother)
the cry baby in the family.

---

Wednesday, January 28, 2004 7:52 PM CST

I have decided we are all hibernating. We have all been sleeping most of the last few days. Robert is the only one playing much. Maxie is feeling better but still looks very very tired.

Christy is feeling better and and finally got out and got Maxie's mail. He gets so excited. Christy then went to Autozone to work for a little while. I am glad, she needs to be around people. Robert went to spend the night with the boys down the street.

The roads are still slick so again no school tomorrow. I think Maxie has to go have blood work taken to see his levels. I think he might need blood. I hope that is all that is wrong. He has really looked bad for a while now. I will be glad when they do his scans and test. Praying all the time.

Missy has been a blessing so far. We all love her so much. She thinks Christy is her Mom. She follows her everywhere. We all laugh when she barks and runs all over the house. She has learned how to go up steps but not down. We have a tri-level so that is a problem. She is right now barking and barking because I am not paying attention to her.

I want to thank all the other people that have dropped by Maxie page on Caringbridge lately. The support means a lot. Thank You.

Julie (Maxie's Grandmother)
puppy sitter tonight

---

Monday, January 26, 2004 10:38 PM CST

SNOWED IN, BUT STILL HAVE POWER.

Well, the snow ended up being about 5 inches deep with about an inch of ice on top. They say the ice has not caused much trouble with tree or lines as of yet. Well, I hope not because the tornado here in Amelia and the hurricane we had this year knocked down most of the trees. I am still trying to figure out why they do not put most power lines under ground in places where they have so much ice and trees. There is still some sleet or something coming down. No school again tomorrow!

Maxie has felt a lot better today. I am so glad that he has no chemo this week. I do not think his little body could take it. He played his Playstation II most of the day, (sitting up). Robert went down to his friends house to play most of the afternoon. (Maxie just brought me a jar of pickles to open, maybe they should test him to see it pregnant.) Christy is feeling just a little better.

I cannot believe the people we are meeting since Maxie got sick. Some at the hospital but most on Caringbridge. I do believe in Angels, and think God sends all kinds to help you at times in your life that you need help. When I lost my son Stan (Christy's older brother) in '86 (he was 22) God sent me Marty. We would talked for hours and hours about Stan, death, how, why, where, heaven, God and Stan some more. I bet she listened to me cry, scream and talk for over a year. We drove all around Dallas in Stan's Gremlin. We would go in expensive stores and pretend we were rich. Nice restaurrants and order coffee. She was (is) a beautiful blond and guys would looks at us. It was fun and she made me laugh when I had forgot how to laugh. She became the sister I never had, and still is, even if she is far away in Midland, Texas. She was my Angel.

What brought this up is that I have noticed on Caringbridge people that sign this page are just like friends and Angels God has sent me. Some live almost so close to you, you could touch them and others on the street or town where you lived most of your life but never met till now. When I sign on and read my mail on AOL or Caringbridge I feel like a hundred arms are around us. Some say, "I have been there, follow me." Some just use the power of prayer to hold us up and together. Some make me laugh or breath when I have forgot how. Some give me a shoulder to cry on when I so need that shoulder. Yes, I do believe now in God, Angels, and the power of prayer.

When Stan died, I had the poem Footprints read aloud. I think right now there would be thousands of footprints in the sand, but not mine because you are all carrying us.

Our first wish Christy and I want to give Maxie is a train ride to New York. He wants to spend the night way up high in a big hotel and take a ride in a lemo. Funny the things he has wished for since he got sick. A lap top, Tom Hanks, Will Smith, Hawaii, New York, Disney, ride a train, ride in a lemo, and a puppy. Well, we got the puppy....right, and another on the way. I told him we could sell the puppies and take a trip to New York and he, Robert and Christy almost beat me up for just saying that. LOL When it gets summer, we are going to work on the wishes like swimming, fishing, camping, ridding a horse, a 4 wheeler, a sail boat, a ski boat and trips to Washington and Bush Gardens's. Dreams I am sure, but I have to have dreams for Maxie, I just have too.

Someone ask me about Chris... we never talk about him. He went to school in Highland Springs, VA. He grew up on 9 Mile Road. He is 60 years old, asst. Mgr. at Advance Auto Parts on Hull St. He has done nothing all his life but breath and eat cars. We owned a race car shop in Dallas for years where he and Stan built race cars. Stan drove them, ( I taught him how to drive). Chris knows more about cars and parts in his little finger that most men know in there whole lives.
Oh, and he is always right....LOL

Have a great night,
I hope you have great dreams too.

Julie (Maxie's Grandmother)
(X race car driver)

---

Sunday, January 25, 2004 11:15 PM CST

Well, it is almost midnight and we still have power so far. We have about 5 inches of snow on the ground and now sleet is coming down on top of that. That means the power lines will be covered soon. Chris has to open in the morning and it is about a 45 min. drive normally. I tried to tell him to take a bath tonight before going to bed, instead of morning, just in case no water well working.

I filled up the bath tub and all the jugs and pictures of water I could. I brought in a lot of fire wood but as I look now I only have 4 pieces left inside.

This afternoon we went into to eat and get some groceries. The kind of junk you can just eat instead of cook. While we were in Breakfast Barrel the snow really started to come down hard. We went right over and got gas (in case the power goes out, no pumps) and then to Krogers. When we got in the check out line, I told Maxie to sit down and Robert and I would go get the van and pull up to the door. The cars were already covered with snow and you could not see out of windows. I pulled up behind a car so I would be next in line at the door. He did not move so I pulled around him... NO, I DID NOT HIT SOMEONE! I pulled up right in front of the door nearest the check stand Christy was using. Unlocked the doors and waited. Christy PULLED open the hatch mad as, well, mad. She was reaching for the van as I pulled around the stopped car and she and Maxie had chased me all across the parking lot. They were cold and covered with snow. I can just see her reaching for the van as I am driving off. She ask Maxie what I was on? LOLOLOL

The dog loves the snow. Her fur is so thick that it must feel good to her. The cats would not even look out. Robert went out every time he could get a reason to go.

Maxie is feeling just a little better. He finally ate and drank good tonight. He just came down to get me. Said he was waiting for me because I cuddle good, so I guess I better go up to bed. Put another log on and turn the lights out. Oh, the weather man just said to report all power outages to the electric company so they will know where lines are down. He said you can log on to the internet to report this. LOLOL

That guy must be on the same thing I am...

Good night,
Julie (Maxie's Grandmother)
( just trying to keep everyone warm)

---

Saturday, January 24, 2004 8:16 PM CST

It has been another sleeping day around our house. Christy is still very sick. Robert is a lot better. Maxie did get up and play with Robert today and did not sleep all day like he has all week long. I think they ate a whole box of pop-cicles.

I took a long nap this afternoon, while Robert puppy sat. Gretta the cat has finally started to play with her, but I do not think she wants any other cats to know. It might hurt her reputation! Patches still thinks if just just ignores the puppy, it might go away. But of course she still thinks that about Gretta.

We are expecting a giant snow storm here in VA tomorrow. Four to seven inches and then ice and sleet over it. That should be fun. In VA every time is ices trees fall and the power goes out. I went outside to move the van to the end of the driveway and get as much firewood in the house I could. When I got to the stack of wood, it had been filled to the top by a neighbor. He did it without me calling or his wife telling him too. I told Susan, "he is a keeper". I hate this house but love the street we are on. We have almost all great neighbors, but his one has been on the top of our list since the boys met their boys. God has always sent me such special friends most of my life.

We have decided that any donations from now on will for great memories for Maxie. Anything we can do on his good days to make a lifetime of memories now. Any funds left will go for a college fund for Maxie (we hope and pray) or Robert.

If I do not post for the next few days you will know our power is out and we will be sleeping in the den in front of the fire. Please keep us in your thoughts and prayers.

Julie (Maxie's Grandmother)
(the fireplace keeper)

---

Friday, January 23, 2004 5:42 PM CST

Well, we all have slept most of the day. Maxie is just a tiny better. Robert is a lot better just a little sore throat, (so far). Keeping the boys apart is the hardest part. Christy, she has been in bed all day with the puppy. She is so tired. Her body is fighting the infection and sitting almost 8 hours yesterday at the clinic was to much. I should have gone.

Maxie has no chemo or radiation this next week. I so wish he felt better. We would do something fun. This is the first week since treatment started of NO treatment. They are changing to a new chemo drug. I will have to ask Christy what kind. They are going to do his next scans Feb. 2nd.

We picked a name for the new puppy when she gets here from Ohio. (Sissy) Sherry Pye, like cherry pie. Sissy after our neighbor Susan, Sherry after our family doctor again and Pye after friend and relative that we could not have made it without the last few months. I would need about 100 puppies if I kept on doing this. We have had so much help.

I have had 3 people ask me this week what his chances are. If you ask the doctors they say 100 percent, if you read the book it says about 50 percent for five years. It is in Gods hands now. I am just trying to live day by day. Cancer is our whole life now. It is like owning a big company. We eat, sleep and breath cancer. I know our friends think we are so self involved but only true friends will be there for us all the way through this. I found this out when I lost my son in '86, and you know, I still have a few of those friends with me now. What great friends!

Well, I am the cook tonight, and you know I hate to cook.

Julie (Maxie's Grandmother)
THE COOK...LOL , now that is funny!

---

Thursday, January 22, 2004 4:51 PM CST

Thursday, what a long week. Maxie has not felt good for about 5 days now. He and Christy have been in Richmond all day at the Nelson clinic. She has called about 3 times. His counts were good but had lost weight. He was very dehydrated. He could not even pee for a sample. They were having a hard time getting his port to work. They were going to give him an IV to hydrate him before letting him go home. He as an bad ulcer on his tonsil. For those of you how do not know, that is one of the side effects of chemo. Most people just think hair loss, they do not know about all the other things. The damage chemotherapy does to a body is so scary.

Christy is very sick also. She has an massive infection. She is in a lot of pain. Our doctor gave her some very strong pain pills and antibiotics. She was so high last night... so funny. She had received some money and was paying her back bills and then started paying mine. She kept saying how great it felt to pay them. I would have robbed an pharmacy long ago if I had known she would be so nice (and pay my bills). When she called from the clinic today and said she was hurting so very bad. She did not want to take the pain pills and drive, plus they make her itch all over. I was ready to go stay with Maxie if they put him in the hospital. She had already packed the hospital bag and took it with them. It sits next to our kitchen door all the time anyway.

We we have more puppy news. We are getting another. Guess we are really going into the puppy business. This one is also a girl. Her name is going to be Sherry. She is in Ohio. It is a very very little Shih Tuz.
Make a Wish called and said she will be shipped when the temperature is over 32. Maxie said he does not feel like going to Disney, does not want to fly either. I think he likes watching Robert and his Mom be happy. He is that way. ( I am crying.)

I am very homesick. I think I am going to find some tires and the first week he does not have chemo for about 10 days we are going to just take off and drive to Texas. I want to show him all the things I talk about all the time. I want to sit at my sons grave and tell him about Maxie. I just want to spend hours ridding and talking. No hurry, just stopping if we want and sleeping when we are tired. I think it is a strong instinct that people want to go home. Like birds, butterfly and turtles, we all need to go back home sometime. My Mom use to call and say I need to see you. I would laugh and say, you talk to me every day but she would say " I just need to look in your eyes."

Well, they should be home soon. I think I will make a pot of coffee, put more wood on the fire and take the puppy out (again). Wish I had something strong for my coffee...lol


Julie, Maxie's Grandmother
( nurse and maid again )
PS... ROBERT JUST WOKE UP WITH 101.3 TEMP, HEADACHE, CRICK IN NECK, NOSE RUNNING.. AND I THINK I JUST HEARD A COUGH... OH NO.....I GIVE UP...!!!

---

Wednesday, January 21, 2004 10:35 AM CST

This is going to be very short... very.

None of use feel well. Maxie is very tired and weak. He goes to clinic tomorrow unless he starts running a temp. My guess is he will get blood and maybe hydrated.

Christy has been sick all week and goes to our family doctor today.

Me, just being me. My lupus-fibromyaliga junk is just doing its thing. We are going to have to teach Robert how to cook and wash clothes. (Do not even ask about Chris, not speaking to him!)

Missy, the puppy is great. She is so smart. She goes outside to do her stuff the minute you take her out. When you lay down, (we all are) she just lays besides you. If you put her on a shelf in a store, people would think she is fake, she is so cute. The cats just keep watching her from high places. The neighbor across the street has 2 big big dogs, they have not seen her yet. They also go DO their thing in our yard.

The low was 14 here last night. Do not every buy a tri level. All the heat goes right up to the bedrooms and the other 2 levels are cold. I am so worried about the electric bill even with all the firewood I am burning.

Sorry I am not funny the last few days. I just feel so bad and mad at myself that I am not doing everything around here. My wish.. for Maxie to be well and that I had a Mother or sister that felt great and would come stay a week and get us all on our feet. Oh well, so much for wishes..


Julie (Maxie's Grandmother)
(am nothing this week just tired)

---

Sunday, January 18, 2004 1:00 PM CST

As you can see we got a puppy yesterday. Christy has been looking in the paper and ads and one pet store for a while. Maxie had thought he was getting a puppy for Christmas and when Santa did not bring one we decided we had to find one. The pet store that they go to here "PET PLUS" told Christy they would sell us a puppy at cost. Even a customer that was in the store at that time left her name so she could donate for it also. We decided to call and check to see if they still had the little Shih Tzu. They still had the little boy puppy we had looked at Christmas Eve but I did not want a boy and for some reason I did not like it. A person was buying it as she called. She looked so sad, calling ads and all were sold. I told her to call them back and ask what other puppies they had. Guess what! They had a girl LHASA APSO. Christy said we will be right over, do not sell till we see it. Lhasa Apso was her second choice but my first choice. They are a little bigger. We all 4 liked it the second we saw it. It kissed us all and played right away. The owner called the co-owner and talked and sold it to us at their cost. It even has a $150 chip in its ear in case stolen or lost it can be scanned. All shots and one more vet check free.

We drove over to Advance to show Granddaddy and even he liked it. Now all we needed were the two cats to OK. When we got home they really did nothing. FuFu Kitty hid and watched. Gretta acts like she really wants to play with her. OH... Her... she has a great name.

MISSY SANDLIN LAGOURNEY

Missy after the lady volunteer at the clinic that did most of the boys Santa this Christmas. Sandlin after our family doctor that found Maxie's tumor the first 5 minutes we saw her.
Robert and Maxie keep calling her "Kitty". LOL Christy has been taking her out to potty and she has been wetting just fine. I ask if the other end was working and she had not yet? Maxie said "Maybe she need a pet book to read, when she goes out!" LOL He is going to be almost as funny as I am. ALMOST!

The puppy played and played with Robert. Running and bouncing and playing so hard. Maxie was just laying on the couch. OH, NO... We took his temperature sure enough he had some and was going up. He fell asleep on the couch. I could not get him to come up to bed. When I got up this morning, Christy was playing on the computer with the puppy asleep at her feet and Maxie asleep on the couch still. Even the fire was still going! Christy has grown up so much. She had sat up all night and watched Maxie. I am starting to cry. You will never know how much she has changed this year. I love her so for doing it.

Well, it is cold and rainy here in Va. Our special neighbor on our street has brought us firewood 2 days in a row. They are the best thing in Amelia county and right now have become a dear friend. I never worry about the boys when they are with them. Maxie's counts are down today so he could not go to their house to play so Robert went. It is all quite here. Christy and Missy asleep on her bed. Maxie is playing his game in his room. Chris and I watching TV and eating. I just love normal no giant problem days now. I never noticed them much before. That was one of my prayers. That I very much needed some down time of just normal.

Thank You... God and everyone that has helped and prayed for us. Please give all the other children and familys of Caringbridge a lot of normal days also.

Julie (Maxie's Grandmother)
Just chilling today...

---

Friday, January 16, 2004 11:23 PM CST

THIS DAY IS LONG AND REALLY JUST FOR MY JOURNAL, SO YOU DO NOT HAVE TO READ, JUST SKIP IT!

It has been a long day, no a long week for me. I have had a headache of some kind all week. Today, was a no school day so I did not have to get up early to get Robert on the bus. When I did get up Christy looked at me all sad eyed and said she did not feel well and Maxie needed to go to clinic. OK… I jumped (in the shower) and got ready. Maxie was very hard to wake up. He went right back to sleep in the car.

The traffic to the hospital seems to get worse every time I go. Then when we got to the hospital the parking lot was full but they did not tell you till you got in and you were stuck driving bumper to bumper around an 8 story parking deck. We finally got a place about a half-mile from the door. We were 30 minutes late,I had forgot the cell phone, so we kind of got a LOOK when we got there.

He port is clogging up almost every time now so we have to wait and have to clot buster put in and let it work. We sat in the clinic from 11:30 till after 3. They do not like talking to me about Maxie, I am just the Grandmother, so they have to call Christy. It was too late to get blood today so we left. He was very hungry by then, NO BREAKFAST, so I went to the hospital money machine to get $20 for a burger. OH! no debit card, Christy had used it and it was lying next to the computer at home. We had $1.00, and that was Maxie’s. No phone no money!

Now driving home it is the 4 PM traffic on Friday on the toll way, GREAT. We are facing the west, winter sun, tired and hungry and I with a headache. I stop where I can write a check to get Maxie something to eat. $16.00 and he ate about 4 bites. Then I start the long trip home. The sun is even lower now. Maxie goes to sleep.

When we get home, Christy says the clinic called, his counts are down. I tell Christy we saw the little girl from Maxie’s class last year, again in the clinic. They were admitting her for more tests! All her family was in the little room with her and they had that look we all know to well. That deer in the headlight look. I gave them our phone number and told the Mom to call us. (I will keep you posted and my fingers crossed.) My guess is she will need our (all of us) support soon. There is only about 20,000 people in our little county. Two fifth graders with cancer would be high odds I think. Christy called her Mom later at the hospital. The Mom says it is not cancer, something in the bone marrow, and bruising. Like I said, I will keep you posted. I told Maxie she was a very beautiful girl. I ask if she was smart.
He said, “Yes, she is beautiful and smart, No, Perfect!

Well, Maxie is very tired, so we want to put him to bed early. He needs his pills for upset stomach. I had called it in a few days ago. We call Granddaddy to pick up the Rx’s on the way home. He did, but they did not give him Maxie’s. How may Lagourney’s are there in Amelia? None! We are the only ones in the whole U.S. That is why he was named Lagourney instead of Young! So Chris and I drive back up to Rite Aid and pick up the missing Rx. We get home and now it is 9 PM. This time gave us the new wrong one, not the one I called in a few days ago and they are closed. Dumb me for not looking. Christy was reading the ticket asking me why I did not notice it was $15 not $25 (for 9 pills). I should have known it was the wrong one, but he needs this one also. Then she notices that it is billed to our insurance not hers. What a mess that will be.

Oh, well, tomorrow is another day, (GONE WITH THE WIND) and frankly my dear,
I do not give a ______ LOLOLOLOL!

Julie (Grandmother of Maxie)
(Looking for my xanax)

---

Thursday, January 15, 2004 7:20 AM CST

OK, OK.... STOP YELLING AT ME. I GET IT, BUT IF ONE MORE PERSON TELLS ME "GOD ONLY GIVES YOU WHAT YOU CAN HANDLE" I AM GOING TO HIT THEM HARD! SOMEONE NEEDS TO TELL HIM TO BACK OFF ME!
"I have had enough and my family too!"

I slept most of the day yesterday. I guess I needed it. Christy had worked most of Tuesday night at Autozone and I was still awake when she got home at 4: AM. In the morning I cleaned off the den couch that had been covered with Christmas toys for weeks so I could sleep close to the fire. The 2 cats must of thought I did it just for them. At around noon, Maxie wanted me to watch a Rug Rats movie with him so I moved over FuFu Kitty and made a pad of blankets on the floor for Maxie. Gretta kitty did not move one inch. I watched about 10 minutes of the movie and fell deep asleep. Maxie went upstairs and got in bed with his Mom. He told her I was going to have a good nap because the cats were sleeping with me! They both said they were not going to sleep and then proceeded to fall right off. I woke up at 3 pm.
What a great nap!

Christy and Robert went to Richmond to get some groceries. Maxie's homebound teacher Mr. Poore (Tater) came around 6. Tater's Mom had retired a few years ago from teaching but they wanted her to come back. Tater said she told him the kids were so different now days. I ask how? He said they are not nice like Maxie and Robert. I felt so proud. It is hard raising boys without a father. Chris is here but he is so tired and grouchy most of the time. Christy and I do our best but I wish that she would fall in love with a great man to take care of her when her Dad and I are gone and be a wonderful father to my boys. (I could always call Michael Jackson to help out. LOLOLOL)

Well, I was still tired after Robert's homework and decided to go to bed early. I was all settled down watching West Wing when here came Robert after his shower. I told him to go get in his bed and he said, "No, I want to talk to you...!" He got some books with hummingbirds and proceeded to show me everyone. He kept asking if I had ever seen each one and if I like it. I told him if he was going to sleep with me he better go to sleep fast so him Mom would not make him get into his own bed. He told me he wanted to sleep with her and Maxie could sleep with me. I started to tickle him and told him to get out of my bed. "I do not want to be second choice on your list!" He looked at me so serious. He held his arms out wide and said, "My list goes this way. I love you all the same!" With tears in my eyes.. "I said OK.. just be still till she comes up for bed. " He went right off to sleep in a few minutes. I cuddled up to him and smelled his hair... (he did not wash it) and smiled and fell asleep too.

Just as I was just going to sleep, here came Maxie. He said his mother wanted to know where the cookies were I had made earlier. I told him I had ate them all. (I had hid them from Chris and Christy.) I turned back over as he tiptoed out of my room. At about 2 AM, here came Chris and Christy to bed. Chris fussing that Robert was sleeping on his side and Christy trying to squeeze in between Robert and I. You would have to see us. We are all VERY big people. Poor little Robert squeezed in between us. My poor bed!

That has been our way most of our lives. No set hours just lots of love. I hope days like this will be deep in my memory for the rest of my life. Thank you for shaking me... It was a good day.

Julie, Maxie's Grandmother
(still a little stressed, but better)

---

Tuesday, January 13, 2004 7:23 PM CST

It is so strange how Maxie just throwing up yesterday after his chemo just kind of picked me up and shook me. Christmas was so good and he has been doing great. Except for tired and pale you can almost forget he is sick. (And bald but we are not suppose to talk about that.)

You know my fear? I picture the little cancer cells hiding somewhere. Like a roaches or fleas, just waiting to have 10,000 babies and try to take back over that little body. I keep telling Maxie to picture his chemo drugs killing his cancer cells but I am good at giving advice but not taking it. I was thinking about how in July I did not think he would be here Christmas and here he is. I am kicking myself for not being more grateful.

Maybe it is the winter blues, money or stress. The donations have stopped. That was expected. We were told they would usually on go on only for a short while. Christy did get food stamps and that has helped a lot. She should know about the Social Security benefits soon. We are keeping our fingers crossed about that. The medical bills have all been covered by insurance and medicare. See, prayers are being answered. Why am I do down? A great Christmas, good support from our friends and angels, someone shake me hard.

Another cold front is coming this way. We are almost out of wood again. I almost think I would rather be cold than carry that dumb wood up steps and down steps. The cats do love the fire. Robert has stopped playing with it since he burned his arm just a little last week. Maybe that was a good thing,(Martha Stewart).. Speaking of Martha, if someone called and told me my stock was going way down.. I do not think I would care who told me. Sell, sell, sell! Well, off my soap box and pity party.
Maybe Christy should keep writing, not very funny today.

Julie, Maxie's Grandmother
(Feeling sorry for herself)

---

Tuesday, January 13, 2004 0:58 AM CST

Of course you know when someone writes this time of night its only me. Yes I decided to write so she will stop nagging me dang! She is so much funnier. Now we can trade she can fill out the five page quistionaire I have to fill out. Seems like to get a few hundred dollars I have to write a book and beg. Everyone say a prayer that good news from Social Security will come soon. I did talk to make a wish and she explained that they confer with vets and so on and get the dogs from the specific breed type breeders. So there are no puppies ready now but soon. She apologized for the confusion. Maxie still wants to stay in a tall hotel and get room service so I am going to get on the web and look for a few hotels in DC or Baltimore. Some place with room service. He wants to ride in a limo to so hey I will beg. That is something I can try and give him. If he does pull through this he deserves to be pampered for the brave guy he has been through all of this. And if it turns out that he is ready to see my grandma and his uncle Stan than he will have gotten things he wanted. I always think of my brother up there flirting, and my grandma shoe shopping and Maxie's grandad on the other side fishing. He was a good man, too bad the son(my ex) couldn't have been half the man he was.
But at least Maxie has good spirits. He told Cassandra(his clinic nurse)my mom cried along time when I was asleep the other night and rubbed me. She asked me why? I said I was watching ER where Dr. Green gave up and said no more and refused Vincristine. It just felt like a reality check. Wow this is happening to us! And he and I have became so close. We cuddle and giggle and make grandma mad because we won't go to sleep. Then on the weekends me and Robert snuggle and sleep together. He had a bad dream about hitting Maxie in the stomache and Maxie died so now they haven't been fighting so much. Strange how serious he is about his dreams. He gets that from grandma. They didn't seem too concerened with his leg being numb, they said let them know Friday and then they might hold off on the Vincristine Friday. So time will tell. He did throw up tonight been a while since he has done that. Kinda shook me up a little. I guess that lets us know that there is still issues.
Anyway I am tired and I am trying to drink and eat no sugar so I am not happy! :( This lady next to me at the restaurant tonight ordered a DR. PEPPER and then some sopapillias. I wanted to hit her! Is that diet rage or restaurant rage? HMMMM....would that get me time? I would plead lack of DP! I am an addict judge!

SHE IS TRYING SO HARD TO BE FUNNY LIKE ME... KEEP TRYING CHRISTY!

---

Saturday, January 10, 2004 3:57 PM CST

I HAVE LEARNED TO LOVE NORMAL DAYS. THEY ARE THE BEST.

We got snow Thursday night and all day Friday. It was very fine so not very deep but it has been very cold. It was 14 here this morning and my fire had gone out. Took me all morning to get the den warm. Robert played outside Friday while Maxie and Christy went to Richmond for his last radiation treatment and to the clinic but they did not answer the phone so she came home. No chemo Friday, so he is feeling good today.

We let him go play in the snow today with Robert. He just came in and I sent him to bed to get warm. No sign of Robert. He will stay gone till you drag him home. They are so different.

They told Christy that they wanted to wait 3 weeks before running all the test again, to see how much of the tumor is left and if they think they can now do surgery now. I saw a new treatment for breast cancer where they put a bulb in and do the radiation right in the tumor. I decided they can do that on Maxie's too, but no one ask me. They leave it in for a week and then it is over.

Well, no news is good news around here. Does anyone want to come help me paint? I am trying to do a can and week. Gee, that would be 52 a year. I better slow down. Have you priced paint? Most of what I have bought so far is close out paint, already mixed. I am just watching for colors I like. I better go. The fire needs more wood and I guess I better find Robert. I love you all for letting me vent and write my journal here.

Christy did talk to the head Make a Wish thing... and I will let her write what happen if I can ever get her to take back over. I was just going to do this when Maxie had the flu weeks ago!

Julie (Jujualag@aol.com)
Maxie's Grandmother and jack of all trades.

PS... Roy this is from all of us XOXOXOXOXOXOXOXOXOXO keep up the good work you do.

---

Thursday, January 8, 2004 1:27 PM CST

I was right.. only 2 more days of radiation. I am glad. The driving every day is so hard on all of us. Plus his legs are still numb. I wonder if he has some nerve damage?

I need to vent.. We have had so much trouble with "MAKE A WISH". First the ladies they sent out to interview Maxie where rookies. They kept pushing dumb junk on him like going surf fishing or meeting Harry Potter. We were told not to coach him so we were trying to just let him talk. That was not working with them coaching with dumb places and people to meet. He kept saying Tom Hanks or Will Smith. We then kind of pushed him toward Disney. Everyone that goes his age has so much fun. The also have so many cancer kids they know how sick and bad they can feel. Well, then because the father is absent and cannot be found they could not go without his permission. He has not even seen them for years. Long story.. not for here.

Well, Maxie, Robert and Christy have been wanting a puppy. Their dog "Charlie" had been ran over last year. We found out "Make a Wish" would buy a very good dog for Maxie so Christy called them and told him that is what he wanted. We wanted one that would not shed much. There are not many and Christy and I wanted a small one dog and not to hyper. We read about breeds, and them and watch dog shows and decided a few months ago on an Lopaopso (my spell check is laughing). Christy had one a long time ago. Shih tuz would be ok also. We had to get the doctors to say OK and sign off of the wish. Now the lady from "Make a Wish" keeps calling now and trying to talk us out of them.

The first week Maxie was in the hospital he said he wanted an lap top. I now wish that is what he had ask for it back in September. That and Tom Hanks were his first two wishes and now this is just a big mess. I am tired of messing with it all. I just needed to vent.

Guess I will go bring in some fire wood and rest. It is going to be very cold the next few days and maybe snow. I hope he can have some fun in the snow. I want him to have great memories. Not stress, messes or pain.

Julie (Maxie's grouchy Grandmother)

---

Tuesday, January 6, 2004 8:43 AM CST

Maxie's Update &
our Thank You to our Friends

Well, it is 2004. That makes me feel very old to say that. In July we were not even sure Maxie would be here for Christmas but here we are. If he has only this Christmas or 2, or 3 or 50 this will be the best Christmas we ever had. It is all because of friends. We did not buy the boys one thing but the tree was covered with more gifts than I ever saw. They had the best time ever Christmas morning.

We received toys, clothes, 4 coats, 2 for this year and 2 for next, a small TV-VCR for the boys room. When Maxie's white count is down that will help so much keeping him away from people and germs. We also received gift cards, cash donations, gasoline and cash from the jars. OH and food! We are still eating the food that was given to us for Thanksgiving and Christmas. We would not have had a very good holiday with out all of you.

The strangers are the best part of Maxie's illness. I have meet the nicest people in my life the past 6 months. Some on my street, some in Amelia and some on the web all over the world. A few with kids with cancer, a few that have been touched by cancer and some with just big hearts.

This is a Thank You card to all of you. I can never in the rest of my life every tell you how thankful we are. Maxie has been having his chemotherapy treatments since September once every 3 weeks over night in the hospital, one chemo drug once a week at the Nelson clinic, and for the last 5 weeks he has had radiation every day at the Massy clinic.

The weekend after Thanksgiving I thought our fight might be over. He had a fever. Our doctors told Christy to bring him in to MCV the ER. She was in the ER for 7 hours. The finally found a private room. He had to be isolated because he was almost no white count and the flu and a high fever. I was so scared. The news was telling of healthy children dying from the flu all over the United States. I think I said more prayers that few days than any in my life. A few days later Christy called and said we are coming home! His fever had broke and they needed the room. I was glad. I think the hospital has more germs than anywhere, plus he just will not eat when there. He has had trouble keeping weight on. He is staying around 72 LB's now but if he goes below 70 he will be back on the intravenous food 14 hours a day. He is still being homebound schooled but during this month with both chemotherapy and radiation he is very tired and week. We will know more about his tumor in a few weeks when they run scans again. I will let you know..

Thank you so much for your prayers and everything!
Julie Lagourney, (Maxie's Grandmother)
(This is my third letter to the editor in our local paper.)

---

Monday, January 5, 2004 7:37 AM CST

MAXIE DID GREAT.... IS HOME IN ONE DAY...

Maxie had a easy time. They gave him something to sleep and something for upset stomach and he sleep right through it. As for Mom... she did not sleep. There was an one month old baby in the next room crying all night. The Mother had to leave and the nurses were to busy to hold it. They usually do not have babies on his wing but I guess the hospital is still very full from the flu. We cannot even leave our 10 year old. I do not know how I would feel if I had to leave a little baby. It made me feel needed and happy I am around to help during this time.

Maxie got home to late Saturday to be home schooled, but Mr. Poore came yesterday. They are going to do test most of next week. Maxie wanted to go to school today but he is still having radiation every day so I think we will wait till that is over, plus the flu is still around. He fussed yesterday because his legs had no feeling? I wonder if the radiation is causing nerve damage? They warned us that it is aimed at a place where a lot can happen. His dot is almost in the center of his tummy. There is a lot of body parts around there!

Christy told me she ran over an RACCOON not a opossum. Last night Maxie had fallen asleep in my bed and when I came to bed it woke him up. He ask me if he could get up and eat some Honey Combs. Of course... food YES. I kind of jumped up and forgot I had left the night stand drawer open and I ran right into it. HARD!!. You know what he said.... "OW! I BET THAT HURT". I was trying not to cry and then I said I am not a RACCOON! I think we are going to say that line a lot around here for a while.

It is going to be very cold the next few days here in VA so I guess my fireplace job starts again. It is all clean and ready. I am going to paint for a while. I did the bathroom closet yesterday after we finished putting up Christmas junk. The door to the attic is in the back of the closet???? The strange man that owned this house had no taste. Every room is yellow. Yes, EVERY ONE! The outside is a very ugly mustard yellow. We have a lot of work to do to make it feel clean and a more up to date. I still want to move one more time. I know I can not do stairs anymore. Maxie and I want a pool, Robert wants backet ball court, Chris wants a 5 car garage with a lift, I want a porch & or deck... and Christy wants her own place. You have to have dreams, RIGHT!

Well, guess I better get started... One day at a time. One dream at a time.

Julie, Maxie's Grandmother
(the painter)

---

Friday, January 2, 2004 7:53 PM CST

MAXIE IN HOSPITAL TONIGHT!

This is his night to stay in the hospital overnight for a full round of chemo. That is 3 drugs, plus he is still getting his radiation everyday and one chemo drug a week also.

Christy called and told me what room and phone number they had tonight. She said Maxie was eating FunOnions, his third bag. They tried to send in another dietitian but Christy said "DO NOT SEND ONE IN TO TALK TO ME AGAIN! RIGHT NOW WE ARE TRYING TO GET HIM TO EAT ANYTHING HE WANTS, ANYTHING!"
The nurse behind her in the room was laughing.

They were both in good moods because all their favorite people were there. At this hospital a nurse picks the patient with cancer to be just her patient. She is his nurse every time he is in the hospital and if she is not others sign up for them. Maxie has them fighting over him. Barbara is his main nurse. The last time he was in, they wanted him to have a Phenomena immunization, Barbara could not give it to him. She had to go get another nurse to stick him. That was so sweet. She said she could IF she had too but she just hates to hurt him. Brenda his second, was so mad the first month in the hospital because she had to do all the bad stuff on her shift to him. She got big tears once and stormed out. She said, "He will not trust me if I keep having to be the only one to hurt him." I just love that! He has a small crush on one.. her name is Angela. He will not let her see him with no clothes on. LOL

I made them stop and buy a new remote control for the hospital TV. Ours broke the last stay and it drove both of us nuts. When anyone comes in they think that is so smart to have your own remote control. One time when we were in a semi private room and were leaving the kid in the next bed got mad when we took it. LOLOLOL Barbara had told us the first long stay to get one, so I just brought an extra one from home and reprogramed it. This time Christy just bought an RCA one for $9.99 and it worked right away. Worth every penny. If I was rich, I would buy a case and just give them out every time we are there. Maybe some day, I will do that.

Let me tell you a funny.... The other night driving home from the clinic, it was just getting dark. Christy ran over an Opossum, a big one. She said it went " BUMP, BUMP, BUMP" under her car. Maxie looked at her, very seriously and said.
"OW! I BET THAT HURT". Christy said she was just about crying from killing it and then started laughing. She was still laughing when she got home.

Well, I better get off... Robert just burned his arm a little on the fire place insert and needs me...

Julie, Maxie's Grandmother (the nurse...)

---

Thursday, January 1, 2004 11:46 AM CST

THIS WILL BE SHORT.
HAPPY NEW YEAR AND I HOPE THAT ALL OF OUR FAMILY AND FRIENDS WILL HAVE A BETTER 2004.


Maxie is doing OK, I guess. He had to have almost 2 bags of whole blood yesterday. I really thought he would feel a lot better today. Having his full chemo treatments and radiation at the same time is so hard on him. I keep thinking of a dog we had once. It was a Corgie named Bobby. Bobby got heartworms twice. My Mom did not want to put Bobby down so the vet treated him for the worms. He told us the treatment is to give Bobby just enough arsenic to kill the very strong worms and not kill the dog. You know when to stop the treatment when the dog is almost dead. Then you try to save the dog. When I see Maxie, so pale, so thin, so weak, so tired, and sooooooooooooo bald I keep thinking of what the vet said. Guess I am just a litte down.

I was taking down the tree last night. I did not want to chance bad luck for the new year, when at about half way through taking the balls off the tree, I see big eyes looking at me about half way up, inside the tree. Patches the cat was just sitting there waiting for me to move. Every time I tired to get a decoration, beads or lights she grabed at them. We all have such fun with the 2 cats. They make us laugh every day. Robert and Gretta were playing hide and go seek. Robert started playing with a tiny car he had received at Christmas and Gretta picked it up with her teeth and took off. She ran in the closet to hide with it. As you can tell I am a cat person.

I said this was going to be short...lol.

TOMORROW IS HIS CHEMO OVERNIGHT IN THE HOSPITAL!

Have a happy day and eat your blackeyed peas...

Julie,
(Maxie's Grandmother and cat person)

---

Tuesday, December 30, 2003 8:22 AM CST

Hi, well it has been a very nice weekend. We did nothing special. The boys played with their toys and just rested. They went to Toys Or Us to send a gift certificate. It has been a nice few days not having to drive to MVC in Richmond. That is an hour drive and 3 tolls. Then sitting at the clinic makes you so tired. I would rather clean the whole house than sit for 4 hours.


Monday, Chris was off so we all slept late. When Christy got up the clinic called and wanted Maxie to come in to get more blood. He was so upset. He likes to know ahead of time when he is going to get stuck. He really did not want to go. They left about 1 PM. Robert wanted to go with them. They called about 6 PM just leaving the clinic. They could not get his port to work so they had to put in a clot buster to stay in the port over night. That means he will have to be stuck again today. Poor baby!


This should be the last week of radiation, for now. Keeping our fingers crossed. Well, I need to get moving and do a few things. Everyone will be up soon and after that I cannot keep up.

Keep us in your prayers.


Julie (seamstress today)

---

Friday, December 26, 2003 10:22 AM CST

THIS IS A 2 XANAX DAY. WHAT A MESS BUT THE BOYS WERE SO HAPPY. I HAVE NEVER SEEN SO MUCH STUFF IN MY LIFE. HOW CAN WE EVER, EVER THANK ALL OF OUR FRIENDS AND FAMILY.

Christy and I got up about 6 AM to try to find a few more gifts we had hidden all over the place. I think we found them all day. The boys finally woke up about 7:30 and went and got Chris up. They opened the big box first. A TV-VCR for their room. Great! When Maxie's white count is down it is hard to keep him away from people with no TV in his room. Then we just started letting them take turns. Robert got to open anything that had no name and he and Maxie decided who it went to. That way Robert had a lot to open also. It turned out very fair. They got so many toys. Not one the same but a magazine I had got Maxie, but now they both have one so that worked out.

I wish now I had taped the voices. We did that one year and I still love to listen to all our family talking. Christy had ask me to wrap the things in the truck of her car. A few days ago I had wrapped every thing I could find. There was one that Robert had bought Maxie and I could not remember what box I wrapped it in so we were all looking for it. Robert started to open one and he stopped and said..."Mom, I think this is yours." I had wrapped a box of halogen headlight bulbs she and bought for her car and were still in the trunk. I had wondered (without glasses) what kind of game that was? We all laughed so hard.

Then Robert opened a basket ball. He is going to be way over 6' so I thought I might as well start teaching him to play some. He loved it! He said, "GREAT, ALL I NEED NOW IS THE COURT TO GO WITH IT". Not a goal, the court! Then we started laughing again about the headlights. I just love little things that make the day. The cats playing in the paper and boxes. The kids calling from down the steet to see what you got from Santa and tell you what they got. The Christmas music that by now you cannot stand another day. Asking them what they like best and it is not what you expected. I love just the normal things. They have become so important to me now.

Five months ago, I did not think Christmas would be like this. No, even a few weeks ago at Thankgiving when Maxie had the flu with "0" white count. Day to day, one day at a time, one memory at a time.

Well, I have a lot of Ebay to do. Ebay is having a listing sell today only so am going to list all I can today. We use the money from our Ebay sales to buy most of our gas we use so much of driving to the hospital in Richmond every day. It really helps and keep me busy and my mind off problems.

Thank you again so much for the help, prayers and love.

Julie (Ebay, parts-and-pieces)

---

Wednesday, December 24, 2003 8:07 PM CST

MERRY CHRISTMAS TO EVERYONE.

I WANT TO TAKE THIS TIME TO THANK ALL YOU ONE MORE TIME. I AM SITTING HERE SO HAPPY THAT MAXIE IS HERE THIS CHRISTMAS, AND IS NOT IN THE HOSPITAL. THERE ARE GIFTS UNDER THE TREE AND A LOT OF FOOD IN THE KITCHEN. THE FIRE IS GOING AND WE ARE ALL HERE TOGETHER AND WARM. THIS IS HAPPY, THIS IS GOOD.

I THINK I HEAR SANTA COMMING SO BETTER GET THE BOYS TO BED. NIGHT EVERYONE. I LOVE YOU TOO.

JULIE (MRS. SANTA)

---

Wednesday, December 24, 2003 1:46 AM CST

JUST WAITING FOR SANTA....

It has been another good day. Love to say that! Maxie and Christy went for blood work and his radiation. His white count was good but hemoglobin down. He might have to have blood tomorrow. They will have to get up early, the clinc is closing early. That is going to be hard, Christy went to work about 10 PM to do schedule and do truck a few hours. Maxie did not go to sleep early either because they left his port open so they would not have to stick him again tomorrow. He worries when they leave tubes hanging out of him. Robert and him both have been playing musical beds. I finally had to get mean and make them settle down, now I am wide awake.

The tree is covered with more gifts than they ever got. I am so thankful. Chris ask me if we bought them anything ourselves..."NO", I said. He had big tears in his eyes and turned over. I think he thinks he is letting his family down. I don't! My number one job is love and then all the other things I do. His job is love, strength and pay the house, taxes and utilities and he is doing that. He should never fill bad. NEVER!

Let me tell you what Robert did! Does anyone want a him today? I was ready to trade him in last night. The lights were out that I put around the driveway. I replaced the fuse and they just came on a second and went right back out. Here it was, cold and dark and I am trying to find what is wrong. I notice a broken bulb! I go get some bulbs (I found some) and replaced it. Then I noticed another, and another, and another.... on and on, all broken. "ROBERT", I was so mad. I used all the bulbs I had just bought to repair the strings I had out. It took over an hour in the cold and dark. When Christy, Maxie and Robert got home I was so mad I would not even talk to him. Then I told Christy what was wrong and then I just lost it. That was two days in a row he had broken something on purpose. I am tired of fixing things!

Ok, do not tell me he is just trying to get attention.. DR. PHILL! I do not need a lecture. What he needs is a good switch, but we can not longer even think that way, so we will just have to put up with kids killing kids at school and so on. We made up this morning. I kissed and hugged him and ask if he was still mad at me, that I was not mad at him. I am such a push over. He smiled and said, "No, I love you." I said, "NO, I LOVE YOU MORE." That goes on about 5 minutes and then I tickle him and say.. "You are really suppose to be nice to Mrs. Santa this week." Now, go empty all the little trashes. (More child abuse).

Christy said to tell everyone "MERRY CHRISTMAS & THANK YOU" , because she has not had time to send cards or "THANK YOU" cards. The boys would not have had a very good Christmas without you. Me, I do not know what I would do without you. Guess I better go cuddle up to Santa, he looks tired and sad. I wish Christy would get home. It is a long lonely drive from Richmond at 3:30 AM, and lots of deer out this time of night.

Merry Christmas, everyone and to all a good night.

Julie (bulb replacer)

---

Sunday, December 21, 2003 7:58 PM CST

MAXIE, IN FRONT OF TREE, TRYING HARD TO TALK ME INTO LETTING HIM OPEN, JUST ONE.

Well, it is the longest day of the year. Do you think the stores planned it that way? Did you know in VA. the sun does down before 5 PM? I, being from west Texas, will never get use to that. In the summer we play outside till 10 PM.

We did not do anything exciting today. The boys woke me up early getting in bed with me when Chris got up to get ready for work. The next thing I knew Maxie was running up the stairs yelling... "Grandma". I came straight up.. ran down the stairs, thinking the house was on fire from Robert putting everything in the fireplace. I forgot I was sore and flew down the stairs. Robert was hiding! Maxie was just standing there? I ask what in the (blank) was wrong? It was about an hour before I learned the truth. Robert had pulled the Playstation II off the shelf, onto the floor. Now a game was stuck inside and the slot where it goes would not open. I told them I was gald! A few hours later, I felt sorry for them and fixed it. Did I every tell you I fix everything but food and motors in this family.

Christy got up late and went to work. Maxie and Robert went down the street to play. I just love saying that. Only about 3 times since July 23 has Maxie did that. I was alone. The house was quite. I decided not to cook, lol and go to McDonalds. I picked up the boys, so they would not have to walk back up our hill. When we got home, there was a beautiful bright red Cardnial laying next to the steps. Our cats kill mice and moles and put them there for us to see. They are both declawed too! I get so mad at them. Then Robert opened the door and Gretta grabbed the bird and ran through the house. We all chased her all over. Maxie got Gretta and Robert and I got the bird. We put it in bag and into the trash can. Gretta is still looking for it.

I am trying to get Christy to write in here again, but she thinks I am funny. The funny thing is, I am trying to be very serious. Caringbridge does need spell check and more fonts.

I am wishing for all my friends and family to have a very happy Christmas day and a good meal with friends and family. My you be warm, full and enjoy every second of the day building good memories. Thank you

Julie, (repair person)

---

Friday, December 19, 2003 6:47 PM CST

(GRETTA, GOT MOVED FROM UNDER TREE TO THE COUCH NO ONE IS ALLOWED TO SIT ON!)

DO NOT WEAR SOCKS OUTSIDE ON BRICK STEPS... YOU STICK AND FALL...JUST A HINT.. AND DO NOT FALL AFTER YOU ARE 50 YEARS OLD!

Very dull day here. Christy and Maxie got up early and went to have her oil changed and car inspected. Then to clinic for blood work, then radiation. They did not get home till after 6 PM. They both were so tired the went right to bed. Robert and I are up waiting for Chris to get home.

I had to wrap Santa things this morning before Robert is home all day with me. His school vacation started today. I had to go pick him up and bring the hermit crabs home. It will be to cold at school and they need a good bath. Patrick, the big one needs a bigger shell. Robert then played outside all day in the below freezing weather in his school shoes. It even snowed this morning a few hours but was gone soon after. Robert loves us to come to school. He is so proud of us.. Srtange, God makes Mothers think their babies are all beautiful and Grandsons think Grandmothers are swell. He does not care how fat I am, though he did say I was getting dents & tracks on my legs..(veins) last summer.

CHANGING SUBJECT QUICKLY!

My house now looks like Santa puked Christmas all over it. We are also the only people in Va. with colored 1950's lights outside. I put out every thing I had and every bow and Christmas thing packed away for years. Christy laughed at my... south of the border look. I also want to know where all the blinking lights went? I loved the blinking and chaser lights. Have you every tried to buy bulbs for the old outside lights. A lady at the dollar store told me most were using the night light bulbs. I told her I was not doing the little candle lights in the windows...lol. I need about 50 colored bulbs, all colors and would love it if they blinked! She looked at me like I was crazy. I am, so what! (That was a little shopping rage.)

I fell on my back steps. Just a little! My socks stuck to the brick steps and my foot keep going. I landed on one toe, then caught myself on a one knee and arm. I hate stairs! Even on good days with lupus-fibromyaliga I hate stairs. Tonight I might sleep on the couch. I AM SO SORE!

Maxie is still looking for a puppy for Christmas. Santa did not get him one. Santa is really starting to feel guilty about it. Poor Santa. I told him when his last chemo treatment is over and white count up, we will get a puppy. Maybe should ask MAKE A WISH since we cannot all (5) go to Disney!

Well, do not think I can last till Chris gets home. Might even take a T3 and go to bed. Night all. Maxie is sound asleep.. and beautiful.. even bald. "ROBERT, STOP PUTTING JUNK IN THE FIRE PLACE!" He is all boy....

Julie (X ballerina)

---

Thursday, December 18, 2003 5:54 AM CST

IS IT FOGGY OUT OR IS IT JUST MY BRAIN?

The cats are going to have to finally move over from under the nice warm Christmas tree. Maxie, Robert and Christy got a trunk full of presents at the party. The party was not at the clinic or by the clinic (foggy). They have volunteers that work at the Nelson Cancer Clinic to play with the kids during chemo, or while getting blood or plasma or waiting for lab work. Most I think are Mothers of children that have already had cancer and in remission. Anyway, one of the Mothers, Melissa is one of thoses. She has 2 boys,and they play on ice hocky teams. Each team picked a child that might need help with Christmas this year like single parent kids.

She told Christy about a month or so ago that she had picked Maxie to help this year. She ask Christy to make a big big list of things they boys might want and Christy also. I had forgot all about it almost. She called the other day and said that we should come to the ice rink to a party and pick up their gifts. Richmond has 2 rinks. One not to far from us and the other across town in West End. The party was to be at that one. We picked up Robert at school, then went to the hospital and had Maxie's radiation and then decided to go eat. Up Broad (the main street in Richmond) about 20 miles in 5 o'clock Christmas traffic. Finally got to the rink. Did you know it is very cold in an ice rink..lol and did you know that old (my age) ladies skate. They were so cute all dress in recital clothes.

They have two rinks at Skateland with a snack bar and a big upstairs for partys. We went up and the team exchanged gifts. Had lots of party food (we just ate) and cute healthy boys everywhere. Funny, I think most were 10 to 12 years old. Robert was as tall as all of them... he is growing so fast you can almost see it. They gave us our big cart of gifts and we loaded in the trunk and started home. They were all very nice to us and did not make us fell needy like I felt the other day in Amelia. The boys had wanted to open the gifts and we told them that was their Santa. Robert wanted to stay and skate but we were all tired and sleepy and still had a long drive home.

It was a sweet day. One for my good memory book. Except for Maxie looking so small and sick it was a great day. I had pointed out Melissa's son to Maxie and told him that her son had cancer a few years ago. He now looks just like the other boys and has hair like John John Kennedy had. Maxie smiled...

When we got home the house was cold (I was not home keeping the fire going.)so the boys got in bed with us and went right to sleep. I rub on Maxie's head when he sleeps next to me. He has only a few hairs left now. His head is so warm and soft. I love him so. He looks so much like Stan at times it is scary. Every once in a while I even see my bother in him. God did know how to fill the giant whole in my heart that Stan's death left in me. I pray now every day that I do not have to go that pain again. I could not do it again and I never want Chrity to feel that kind of pain, she has been through enough in her life. I think God knows that... It was a very good day.

It is the morning after now...I put Robert on the school bus and I am getting the fire going. I am going to make it another good day.

Julie (the fireplace keeper)

---

Tuesday, December 16, 2003 7:51 PM CST

Patches the cat, was jelious of Gretta having her picture on Maxie's web page so here she is....

MAXIE WENT TO SCHOOL TODAY... YEA...

Maxie wanted to go to school so we crossed our fingers and let him go. I do not think he can get anymore germs than at the hospital every day. He said everyone was gald to see him. He took a test and knew the subject because his homebound teacher had already covered it with him. He has clinic and radiation tomorrow so will not go. He also has a Christmas party to go too. I will tell you about that tomorrow.

The water well finally got fixed about 8 pm Monday night. Dale came back last night and finished it. That was a very fast $500. Christy had the washer started and pots flushed in about 30 seconds after Chris turned the circit breaker back on. Chris bought a different pump so no more having to prime the pump if not run for a while. It also has more pressure. We did find out the well is 51 feet deep. That is good to know, I guess, they acted like I should know that. LOL

I was still working on Christmas decorations and cleaning. I washed some and took 2 naps. Christy picked up the boys early from school to take Maxie for his radiation. We try to take Robert so he can see what Maxie is doing at least once. He said the machine was very very big.

I want to thank all of you who have sent gifts. We are not buying anything this year because so many of you have sent things. It will be a supprise for us to see what they get. This is kind of fun, not knowing. If there is something special they wanted and did not get.. I would rather get after Christmas on sale. Robert wants a car that is remote and you wreak and it goes right back together. I saw one ($49.99) and did not get... and now they are all out and going for over $70 on Ebay.. I should have bought a bunch and sold myself.

Well, supper ready and 24 on so better go. My thoughts and prayers a with you all. I have a friend who lost her Mom yesterday and I am thinking a lot about her.

Julie (decorator)

---

Monday, December 15, 2003 6:54 AM CST

WANTED AN EXORCIST TO RID MONEY PIT HOUSE OF BAD LUCK!!!!

What a weekend. You think things are going great. Maxie had a very easy time with chemo. Christy feeling better. Chris good, me about the same as normal.. and then. We had some rain and sleet Saturday night. It was not going to be much so except for some extra wood for the fire I did nothing. I did not fill the bathtub up with water. I did not shower. I did not fill all pictures and sink with water. Why should I? Well, I should have done it all.

Sunday morning our power went out. It was out about 5 hours. Well, the normal things... men pee outside. Girls, do not flush. Brush teeth in a glass of water. Try to use paper cups and plates, but I had none. Give up and go back to bed where it is warm. The boys are fighting, running up and down the stairs. You try hard to close your ears but NO WAY!

The power comes back on... YEA... You tell the boys to go flush all pots. Robert comes back and tells me nothing happens. You get up and look. NO WATER! After the hurricain you had to prime the water well, but that was with the power out 6 days? It is still freezing out and raining. Chris slowly gets dressed and pouts. We call a friend down the street to ask if we can get water to prime the well. He comes up to help but it does not work. The foot valve is bad. It will not hold water in the pipe. Call the plumber Dall Mass. He will be out Monday first thing. Now you have to decide to spend money on the old pump or buy a new Jet Pump. I go for the new but the pocket book says fix the old. It wins!

Here I sit Monday morning waiting. Day 4 with no real bath. Coffee taste funny with water from the neighbors. They have a deep well that picks up minerals and we have a shallow well that uses springs and ground water. I can not start the dishes, washer or cook.. (ME COOK, THAT IS A JOKE.) Wish us luck today. I will be over later for that bath if not fixed by noon.

Julie (PLUMBER)

---

Saturday, December 13, 2003 4:19 PM CST

HOME FROM THE HOSPITAL.... YEA

We just got home from our once every 3 week hospital stay for the big round of chemo. ONLY 33 MORE TO GO. Christy still had flu symptoms so I got to go this time. But let me back up to Friday morning first.

The county we live in has a Christmas Father that gives gifts for needed children. One of the ladies called the other day and ask what the boys needed and I said right now the only thing I could think of was winter coats.. She asked that Christy or I to come Friday to pick them up. When I got there I felt sick to my stomach. I do not like asking for help and more than that I do not like taking it. It is hard from strangers with no faces.. and harder from friends and family but this.... OH.. I feel sick right now just thinking about it. I went in the big old cold gym built in the 40's with nice ladies and men standing around watching. They give you a big black trash bag and walk you around pointing at toys setting on the steps of the court. I do not even remember walking around... "Saying no, no, they have plenty, Thank You". Next thing I know I am rushing home... still feeling sick. I grab Maxie and start out to the hospital trying to forget what I just had to do. I sang Christmas songs all the way to town. He was holding my hand.. He, taking care of me... He knows me so well. I will not do this again never, never, never. I will rob a bank first.

Well, the trip to the hospital was the best ever. He had radiation first. Walked in and right out. The nurse at the Nelson Clinic had to use the clot buster twice to get his port to work to draw blood. If his counts were down to far, NO Chemo! The were very upset about his weight. He is back down to 73 lbs. I was not... they were. He is having chemo, radiation and just got over the flu. What do they expect! Christy and I are eating everything he is not. They had warned us the parents usually gain or loose a lot of weight. Well, I never loose weight unless in love (lust) and that has been a long time ago..

We finally got the go to check in the hospital. Had a very nice room mate. He was 9 years old, so they liked the same things on TV. It took a long time before they could start his drugs. He went to sleep before they even started. They gave him the round and he only woke when they flushed his port. He never got sick, not one time all night.. Yea.. First time.... They let us go about noon after a phemenonia imunization. They said his spleen is not working right because of the radiation. They say things like that so calm. Then they walk out and you just shiver all over. Spleen not working.. right.. oh hell.

Well, Maxie and Robert are fighting and I am tired. House still a big mess and now it is 2 days closer to Christmas. My maid did not show up, and the Mr. Santa said do not worry, it looks fine to me. Thing to do and kids to kill... (fighting over a Playstation II game again!)

Have a nice weekend.
Julie, the nurse.

---

Thursday, December 11, 2003 8:33 PM CST

GOOD EVENING FRIENDS AND FAMILY,

We are all moving in slow motion. I do not think any of us feel very good. Maybe Maxie & Robert feel the best. Maxie had his radiation today and will go in the hospital tomorrow for his regular chemo. Again, I did not know about this. Christy said she told me. One of us is loosing it. The hospital is full so I do not know where they are going to put him. They said on the news today they had a code black? The first time ever? I am sure that is the best place of Maxie right now, all the germs and flu in every hall and room.

I unpacked Christmas boxes. We have a white tree with the lights built in it. Well, of course the middle row of lights will not come on. I do not know about you, but I hate looking for the right bulb or fuse. I called Chris and ask him to stop at Kmart and look for a string of lights with white wire. He went their and Wally World and did not find any. I am not going to put anything else on that tree till I find the right bulb or string of lights. It can sit there till Easter and I will put eggs on it for all I care. That might be easier than packing and unpacking every year. Hearts in February. Clover leaves in March. Easter, bunnies and eggs. Summer just nice flowers or ivy. Fall, you could put on some fall colors and then Turkeys for Thanksgiving. Never mind.. that is starting to sound like work too.

I do not know much today. House looks like we just moved in. It is a giant mess. No help and you know for the first time in my life, I DO NOT CARE! Going to do one more load of laundry, start the dishes, make coffee, let the cat in, balance my check book, do some thank you notes...WOW, NO WONDER I AM SO TIRED...

Have a nice weekend. I might not write anything till Monday.

Julie (slave)

---

Wednesday, December 10, 2003 6:07 PM CST

WELL, WE HAVE SHAKING NEWS.......
WE HAD AN EARTHQUAKE (scared you didn't I).

At 4 PM yesterday Tues, Dec. 9th... yuck a 9, we had a 4.5 (another 9) earthquake here in VA. It was centered about 20 miles north of us... 5 miles down they said. Robert and I were sitting in the den and BOOOOOOOM! Then the house started to shake and shake and shake. We got up and ran to the back door to see the chopper or plane that must have crashed. But there was nothing out side but dogs barking, just like in the movies. I turned around and told Robert that was an earth quake. I called Chris in town, yes, he felt it.. too. I turned on the news.. and yes.. they felt it and were just starting to get calls from all over Va. This year has been something else here. May the 5th a small quake, May 9th (another 9) a toronado, then the hurricane in Sept. (another 9) and now the biggest earthquake in 100 years. Maybe we should move back to Texas.

Maxie and Christy were in the car driving home from his treatment and did not feel anything. She is very sick. I told you she felt bad the other day. She had a doctors appt. and did not go. Now she is in bed sick. I called the nurse and told her and she had the doctor call Christy back and told her to take Advil and drink a lot. If she gets a fever come too the office in the morning. I gave everyone the do not go near her, wash you hands extra good lecture. Yelled at her for not going yesterday morning. She did not even take Maxie for his treatment.. but I am glad, he was so tired.

I am finishing my Christmas cards to people with snail mail. The people I talk to on line I am going to be rude and send them an E card. I do the thank you's the same way. I guess Miss Manners does not like that. OH WELL! She will get over it.

So now no new good or bad news about Maxie. I guess I will take him tomorrow. We are watching Santa Clause 2. I rent DVD's on line for a flat fee. NO, Late charges and no going to town to get movies. You can keep them as long as you want. I try to keep some new kids movie all the time and let them take turns picking one out to rent. They send you a pre-paid envelope to mail them back... I LOVE IT!

His teacher, Mr. Poore, came and is comming again on Sat. He is going to come more over the holidays to help him catch up for his SOL's. Robert has to take his third grade SOL's this year too and is already worried about them. I just hate that junk. There has to be a better way! Well, I have to get them to bed soon and that is a war in its self.
Have a nice night and do not eat the yellow snow!

Julie, (Master Sargent tonight)

---

Tuesday, December 9, 2003 6:42 AM CST

NOTHING, MEETING WITH DOCTOR... WED.

I have decided that Christy is telling me one thing and then telling me a different thing just so I will think I am loosing my mind. I know she told me she was to talk to the doctors Monday, but now she said, "NO, IT IS WED." Sure!

Well, Christy is burned out and not feeling well, so Grandad and I took Maxie to Richmond for his radiation treatment yesterday. We left late, then there was not one parking place in the MCV parking lots, so we had Grandad drop us off and we walked from one end of the hospital to the other (2 blocks) then down 5 floors in the yucky elevator full of germs to the place where he gets his treatment. He is getting so use to them he just walks in and goes alone.

I sat there listing to Christmas music and thinking if this will be his last Christmas with us, and if Christmas music was going to be sad for me the rest of my life. I had tears in my eyes when he came out... When my son Stan, at 22, (Christy's only sibling) died in 1986, I could not listen to 80's music for years. I still get upset when I hear a few songs he liked.

Maxie is still not eating so when we got back in the van with Grandad, he said he wanted to eat at a cafeteria.. Yea, I could get egg custard.. LOVE EGG CUSTARD. We drove about 20 miles up a busy street with Christmas traffic to the place to eat. He got a bowl of fried okra and a bowl of spoon bread... THAT IS ALL. OH, a cup of NO ice root beer. I kept getting things I thought he might change his mind and eat.. But no! HE ATE ABOUT 6 FRIED OKRA, AND NOTHING ELSE. That made, 5 spoons of oatmeal for breakfast and 6 okra today. He is going to be back on TPN in a week or so if he keeps this up.

Well, I ate everything. They did not have any custard.. so I pouted but ate everything else. When we left he wanted to go get Robert a present. We again drove another 10 miles, all the other direction away from home... this must be another "MAN THING". We went to Wal-Mart and he got Robert a Playstation II game, with his money someone sent Maxie. Me, I "looked" at scaners for my computer so I can copy old pictures and put on a disk. I want to put the disk in a safty deposit box. I did buy a new Christmas CD... Alan Jackson "Let it be Christmas". I do not even like country but it is great. Love the song LET IT BE CHRISTMAS...and did get a new lamp shade for a lamp of my Mom's that she bought when I was about 12. (I left the plastic on... that drives Christy nuts.. LOLOLOL)

Maxie fell asleep in the van on the way home... and we stopped at Advance for Chris to sign paper work.. again I was playing the new CD and singing... then I stopped, and again wondered if I was not going like this CD next year...

Got home... Maxie.. had a box.. from "Make it Smile". He loves getting mail. He even let Robert help open it. It was a Star Planetarium... perfect. He loves space things. Then we had a 3 hour battle getting Robert to do homework and get to sleep.. He wants to stay home with Maxie and not go to school the last few days. CHRISTY HAD CLEANED ALL DAY, NOT RESTED.

Well, I must go banking.. the Smart Tag thing just took out another $105 for tolls.. and I was expecting $35.. never ends, does it...

Love you guys...
I just noticed my pills on my desk from yesterday.. No wonder I was so depressed...!!!

Julie...

---

Sunday, December 7, 2003 8:52 PM CST

A VERY NORMAL WEEKEND... YES.. I LOVE NORMAL.

Well, things were a lot better this weekend than last. Christy took Robert to town with her Saturday and shopped for Maxie. Maxie and I get to go one day this week and get something for Robert. He and I just rested while they were gone. Took a long nap...

Sunday I cleaned all day. When I have bad days with my pain I get so far behind. Christy cannot help much running back and forth to town every day. Plus, boys are just messy. You know Pigpin on PEANUTS.. that is Robert. When he walks by, dirt just fall off of him everywhere.

Chris did bring in some fire wood...LOL, OH and he made (burned) supper. Is it a man thing or age thing that men burn things as they get older? My Dad did too! He would smoke up the whole house cooking. The only good thing.. he would only mess up one pan, I never did figure that one out, but Chris messes up every pan I have. He and Christy like to cook but both do not like to clean up after. Hell, I would like to cook if someone cleaned up after me too.

The boys and I watched "T2" and then I sent them to bed. Maxie is asleep but I can still hear Robert. He likes to wait up for his Mom to get home from work. She works on Sunday's to pay for her health insurance and to let her boss have Sundays off. The have been so nice to her. I think I should send a letter to the boss of Autozone telling them how nice they are but what if he does not know and tells them they cannot do that.. let her work only 10 hours and keep her full time...Better keep my mouth shut.

Well, tomorrow is talk to the doctors day.. I think I am getting shingles again... think the 3 or 4th time since this all started.. guess I better not go with Christy. Maybe her Dad can go. Maybe he better drive so she does not hit any more poles LOL. I did ask her why she did not stop when she first hit the pole..?? She said she and Maxie were talking and she thought it was just the tire hitting the curb...

Well, I will post on here when I hear any news tomorrow. Have a great night.. come help me put up the tree and clean the kitchen.. NIGHT..

Julie (Mrs. Santa)

---

Saturday, December 6, 2003 1:03 AM CST

This is Robert, Maxie's little brother. I am leaving his picture up a couple of days so he can see it. He is tall, skinny and all boy. Our doctor says he will be over 6'4''. He loves bugs, an every animal past and present on earth. He and Maxie both collect Pokemon cards and the other one...(Ye Gyo ??) both. He wants a horse, LOL. They both want a 4 Wheeler. I want to know where you ride them now days, the horse or 4 wheeler. Robert talks on the phone to his best friends at school and Maxie hates talking on a phone. He is a great speller. Did not get that from me... He has always been Maxie's right arm. He has been since he was born. With him all the time.

When he went to day care, they finally gave up and put Robert up in Maxie's class to make him happy. When they were 2 and 3 they would sit in their room and play and talk in their own words. I have heard twins do that. Most people could not tell them apart till now. I was so afraid for him when Maxie got sick. Maxie in the hospital so much and Robert alone and not getting attention like Maxie. Christy kind of took over Maxie and I took over Robert. Chris also jumped in and paid more attention to him. We told anyone we could if they sent Maxie something to send Robert something also.. that helped a lot. I love him so.

Well, Maxie is good... Christy is bad. I was having a bad few days with my Lupus Fibromyliga junk and was sound asleep, when she came in my room crying. She said "I do not want to take him to the clinic anymore." I did not know what time it was and thought they might have told her something worse. Scared me to death. I yelled at her to shut up and tell me what was wrong. She had hit a red guard poll at the gas station with the side of her car.. She was in a hurry to get to the clinic and squeezed between it and a car. She missed the car and hit the poll. She was crying so hard and saying "I am tired of driving to town. I am tired of being in a hurry." I kept yelling and telling her it was just a car. I turned around and Maxie was standing in the cold rain shaking and looking so pale, poor baby. I told her to go take a pill and stop crying. LOL Sometime I think you just need to cry and she never does. She left and took Maxie for his blood work and radiation.

Maxie's blood work was better, white count up. They rushed him in and out because he is still contagious. They said 10 days. We are all suppose to go get our flu shot because of his chemo and radiation.. I am waiting till they run out, I just hate shots. Maybe I will take the new spray one in your nose.

It is very cold and wet here. I got a load of wood, $60 for a pick-up full. It is wet,long and dirty. Next year am going to get gas logs for sure. I am just to old to go in and out, up and down stairs. If I sell the insert we have and save the money we spend on wood, it should pay for it.

Well, it is almost 3 AM. Better get to bed. Wonder what kid is in my bed this time? Night all. Our prayers are will all our Caringbridge friends and family.

Juju...

---

Thursday, December 4, 2003 9:17 PM CST

THE PICTURE IS OF ROBERT, MAXIE'S LITTLE BROTHER (9). THEY HAD JUST OPENED THEIR PACKAGES FROM STEVE THE "CORCODILE MAN" FROM AUSTRALIA. ROBERT JUST LOVES THAT SHOW. MAXIE ASK "MAKE A WISH" IF HE COULD MEET STEVE, (for Robert). THAT IS THE WAY MAXIE IS, ALWAYS WANTING TO MAKE OTHERS HAPPY. MAXIE ALSO GOT A POSTER OF TOM HANKS HIS FAVORITE ACTOR. HE ALSO ASK IF THEY COULD MEET HIM. OH, WELL!

It has been a normal day around here.. If you call fighting cancer normal. Got Robert off to school. Chris up for work. Christy and Maxie up and off to Massie Cancer Clinic at MCV for his radiation. He is getting so spoiled. Both of them are. (Christy already was.) It is hard to correct him now and he is starting to know it. Then Robert gets jelious and then he acts up too. Need advice please. If I hit him will they put me in jail for a little peace and quite?

I worked most of the last 3 days on his lap top. Finally got on line.. with AOL 3.0 LOLOLOL. It only had small memory so I ask AOL to send me a old disc. They said just put in 8.0 and it will read your computer and down load what it needs. It loaded 7.0. The rest of the day was spent going out to get cold wet wood for the fireplace.. and doing Ebay. Ebay was going good today. It has really helped with money.

All of a sudden people are calling asking what the boys want for Christmas. I do not know what to say. Have you every planned a party and invited 100 and 12 show up? I have the funny feeling that is what is going to happen with Christmas. I hate to say.. what we really need is just plain old money.. but for the boys.. we need 2 of everything so they will not fight. I am going to try to put the tree up Sat. & Sunday. The Christmas junk is in the attic and hard to get. We never put up all the stuff but I am going to this year. I want to put the train board up on the kitchen table so we will not have to bend over. Now that is getting old. LOL I told you about the trains right. Mr. Lagourney.. Great Grandfather collected trains about 3 times in his life. The last time he just bought HO trains and left in boxes. We have soooo much and have never even unpacked. That was about the time he bought 70 die cast cars. Then he decided to do trains again.

Christy said I could not write about myself.. so I guess that is all. The doctors want to talk to Christy Monday about Maxie. I hate that.. It is like being called to the office in school or Albertsons. We will have to worry all weekend about what they are going to say. Now you can worry with us.

It snowed today, the first flakes here. It was so beautiful for a few minutes. Then it changed to rain. I ask Robert to go look outside and see what it was doing and he came back and said...LOL " It has changed to HARD rain..". He was so serious. I bet there will be no school tomorrow because of ice. Maybe I will take an extra xanax and go to Target if Maxie's white count is up. You cannot believe how sick he was Sunday and fine today..

Have a nice night and tomorrow. Hope your day was normal too.

Julie... the maid..

---

Wednesday, December 3, 2003 5:25 PM CST

HE IS HOME, HE IS HOME, HE IS HOME.

WEDNESDAY DEC. 3RD, 2003

Yes, he is at home. He was so mean and grouchy I think they kicked him out. Christy called me at 6:30 AM this morning, after I went to bed at 4:00, to tell me he was shaking all over and cold. They called the resident down and told Christy with the flu you sometimes do that when the fever is breaking. DUGH, I knew that... but forgot. I had been working on his laptop on line with a very nice person for hours. How do you expect me to remember everything.

I got Robert off to school, checked my Ebay sales.. (0) and bank account (0) and went back to bed and waited for her to call and say come. The phone started ringing at 10:30 with people asking about Maxie. No one every calls here. I had 3 in about an hour. I got in the shower and was going to the hospital so Christy could go to work and then back home to bond with Robert, when she called. He is comming home!

I said he can't come home, I have been telling everyone how sick he is! She turned and told Maxie, "Grandma, says you can't come home!". He did not think that was funny. I think they wanted the bed myself. Plus, where in the world can you get more germs than a hospital. Just getting in the elevator at the hospital, gives me the creeps. (They need spell check on here.)

I got up and cleaned house and made Christy's bed.. I always do that when she is gone. She loves clean sheets when she gets home. At about 3:30 PM the bus drives up with Robert and Maxie and Christy were right behind them. I wish you could have seen Roberts smile. Maxie had lost more hair and had dark dark circles under his eyes. He was so white you could almost see thru him. He looked so sick. But he is home and can eat, if he will, and go to the bathroom.



You know how if you just hate a job and try your best to like it and then when you don't you just cannot stand it anymore you just quit... Well, I quit this! I do not think I can do this. Up and down, down and up... scared and happy, happy and scared. Tired, so tired you almost sleep standing up, to tired to eat.. or care. I quit this job. I want to just love and cuddle, spoil and kiss. No body ask me if I could do this. I just hate it when people say, you must me so strong to have gone thru what you have gone thru. NO, I am not, no one ask me. Or, when people tell you God only gives you what you can carry.. NO>>> I am not a dump truck, and someone needs to tell him I past my limit long ago. How have you all done this? Did you every want to run and hide? Take Maxie with me and just get in the van and drive and drive. No chemo, no radiation, no shots, no medical test, no doctors that do not know shit. (Sorry)


Well, I am off to find that xanax again. Robert is driving Maxie nuts and talking on my cell phone because I am on the computer. (He is in the third grade!) Chris is playing freecell. Christy went to work. (Now you know why she never wrote much.) The cat is asleep in a basket of Christy's clean clothes. The fire is going good. I have Dr. Pepper. All is well, & MAXIE IS HOME.

Thank you for your prayers, they are still working.
Julie (tired old Grandmother)

---

Tuesday, December 2, 2003 7:23 PM CST

LOOK WHAT TIME IT IS! I AM GOING TO DO MY UPDATE AND GO TO BED WITH ROBERT. WE ARE TIRED... VERY TIRED.

CHRISTY JUST CAME HOME AND TOOK A LONG BATH, CHECKED HER MAIL AND LAUGHED AT MY SPELLING IN THE JOURNAL, THEN WENT TO WORK TO DO THE SCHEDULE. GRANDADDY IS AT THE HOSPITAL WITH MAXIE. CHRISTY SAID HIS FEVER HAS BEEN BETTER TODAY BUT THAT THEY NOW THINK HE HAS SHINGLES! CANCER, RADIATION, CHEMO, FLU AND NOW SHINGLES. MY POOR BABY! THEY MOVED HIM IN TO THE ISOLATION ROOM (214) BECAUSE SHINGLES CAN SPREAD THREW THE AIR. I DID NOT KNOW THAT! I SHOULD, I AM THE QUEEN OF SHINGLES.

MAXIE TOOK HIS RADIATION AGAIN TODAY AND WENT BY HIMSELF. HE HAD BLOOD TAKEN FROM HIS ARM AND DID NOT CRY. HE IS GETTING SO USE TO THE HOSPITAL STUFF NOW. I WANTED TO TELL YOU ABOUT HOW UPSET THE DIETICIAN GOT WHEN CHRISTY TOLD HER HIS FAVORIATE FOOD WAS RAW COOKIE DOUGH. NO RAW FOODS AT ALL, NO FRUIT, ON VEGETABLES NO RAW EGGS.. NO FATTY FOOD..AND THEY WANT HIM TO EAT AND GAIN WEIGHT, OH SURE. HE IS NOT EATING, SO THERE GOES THE WEIGHT WE JUST PUT BACK ON WITH THE LIQUID FOOD IN HIS PORT. I SENT UP TO THE HOSPITAL, THE PUFFS W/LOTION, DOUBLE STUFF ORIOES AND A BOX OF CEREAL. I HOPE ROBERT DOES NOT LOOK FOR THE CEREAL IN THE MORNING... I WILL BE IN BIG TROUBLE.

NOW HIS PORT IS NOT WORKING GOOD (AGAIN) AND IS SORE. I AM GOING TO CRY JUST WRITTING THIS. THIS IS GETTING TO BE TO MUCH FOR A LITTLE GUY.

I LISTED ON EBAY ALL DAY. MY EYES ARE SO TIRED. I HAVE LUPUS AND IRITUS SO I KNOW BETTER THAN GET THIS TIRED. STRESS, STRESS, STRESS... WHERE DID I PUT THE XANAX...! WHAT DID RUSH LIMBAUGH DO WITH ALL THE PILLS HE HAD? (JOKE, REALLY, LOL)

ONE OF MY BEST FRIENDS BACK HOME IN WEST TEXAS (BIG SPRING) SENT ME AN OLD 1996 DELL LAPTOP FOR MAXIE. IT WAS THE BEST BACK THEN. SHE SAID IT NEEDED WINDOWS LOADED. I HAVE BEEN MESSING WITH IT FOR A WEEK. I ORDERED A NEW WINDOWS 95 AND EXTERNAL MODEM FOR IT.. FOR $15 EACH. I WAS READY TO GO, BUT NO IT DID NOT LOAD. THE WINDOWS I BOUGHT WAS FOR A IBM AND IT DID NOT LIKE THE DELL COMPUTER OR THE COMPUTER DID NOT LIKE IT. IF CHRIS WOULD NOT NOTICE, I WOULD GO TO CIRCUIT CITY AND CHARGE A LAPTOP FOR MAX. PUT IT IN THE BACK OF THE CLOSET AND SAY "THAT OLD THING, WE HAVE HAD THAT FOREVER". GUESS I SHOULD NOT DO THAT WITH CHRISTY NOT WORKING MUCH NOW.

I HAVE BEEN WRITTING EVERYDAY ABOUT MAXIE SINCE THIS STARTED IN JULY. I SENT TO MY FRIENDS ON LINE AND THEN TO MYSELF AND PRINTED IT OUT EVERY DAY. YOU CARINGBRIDGE FRIENDS HAVE MISSED A LOT ABOUT US. MY WISH IS SOMEDAY MAXIE WILL READ THIS JOURNAL AND MY JOURNAL TO HIS GRANDKIDS AND LAUGH AT GROUCHY MOM AND GRANDMA'S SPELLING.

THAT IS MY WISH. NIGHT YOU GUYS...

JULIE, MAXIE AND ROBERTS GRANDMOTHER.

---

Tuesday, December 2, 2003 0:11 AM CST

Well, good morning. It is 1 AM here in Virginia. I have been doing Ebay all day, while taking care of Robert. He still has a cough and runny nose. I see no reason to send him to school and spread around more flu or colds. Did all of you know that we are sell things on Ebay and the money goes into Maxie's cancer fund? Just in case you want to know my Ebay name is parts-and-pieces. Right now we are listing mostly die cast cars. Maxie's Great Grandfather..was getting just a litte off a year or so before he passed. He discovered HSN and QVC. He spent over $4000 on die cars cars in one month. Well, I am tired of dusting them and they are going. Everything in my house that I have to dust is going.

I guess you want to know about Maxie? The thing is I do not know much. Christy called this morning and said his fever had gone down and was normal. Dr. Dunn, one of his team doctors said he could go home if it stayed normal 24 hours. Christy called back in the afternoon and said if one more person told her to get a flu shot she was going to hit them. (She needs a xanax.) Maxie's fever had gone back up.

I called Chris, my husband, (40 years) and the Grandfather of Maxie and Robert... and father of Christy.. and told him to take Maxie fried chicken. Maxie again is not eating. I then called him back and told him to take Puffs with lotion also. Well, he got chicken, no legs, no mashed potatoes or rolls...and no Puffs. (Starting to act like his father!) While he was at the hospital with grouchy Maxie.. Maxie told him his back burned. He looked and could not see anything but the spot felt hot. Then because they had given him radiation today.. that doctor came up to check Maxie. Maxie told him his back hurt and was hot. When they looked this time it was red... and very hot. Christy got Angela, Maxie's nurse he just loves, and she was worried about it. They called the resident on call down and she said it looked like a reaction.. Christy and Angela were not sure.. it is on his back behind his port. They gave him benedril, zoloft and T#3 and are watching him closely. They are giving him very strong antibotics so, maybe a reaction. They also said it could be a hot spot from radiation? Guess some of you know a lot more about this than us.. we are still learning. OH, MAXIE THREW A PILLOW AT HIS MOM TODAY... LOL

I know I ramble... I am a very worried, lonely lady.. and my spell check laughs so hard at me.. it wets its pants.. so do not laugh at my spelling. Do not ever tell Christy you like me writting on here, Please... and the person that collects Lego's.. they are all on the way to you. I think I stepped on at least 10 today. They sound good going into the vaccumm too.

Please keep up your prayers. I get the feeling we are going to need them this month. Tomorrow I will tell you about the dieticians they sent to talk to Christy.. I have got to go call in more xanax. Night...

Julie, Grandmother

---

Monday, December 1, 2003 0:50 AM CST

Hi, This is Christy's Mom and Maxie's Grandmother. My name is Julie. I am writting this because Christy is with Maxie.. I am glad I get to write... I love to vent.

Maxie is back in the hospital. His little brother Robert has been sick for a week and we have been trying hard to keep them apart but I guess we did not do a very good job of it. Friday Maxie ran a little fever. We called his doctor and she said give him Advil and watch it. It came down. Saturday afternoon it went up a little higher but again Advil brought it down. Sunday morning it went way up so Christy took him in to the ER. They ran test and said it was the FLU. His doctor on call said to admit him because of his high fever, high blood pressure and white count bottomed out.

It is now 2: AM and I just got home from the hospital. Christy and Maxie had to wait in the ER from 1: PM till about 9: PM for a room. He can have no visitors and the nurses have to wear mask and gloves. They had given him something for pain. His chemo makes his legs hurt very bad. They has already had one round of antibotics and Advil 2 times for fever while waiting. When I left it was 103.8, but droping slowly.

He is having a very hard time with his radiation. They said because of his age and whey they have to aim it at it is going to make him sick and will get worse every time. That is going to make just a great December. Christy already told her boss at Autozone that she will only work 10 hours a week this next 6 weeks. She makes the schedule and then works some on the managers day off. He just love her to be there. She is a good manager-worker.. (She got that from me.)

Well, better get Robert to bed. He had got back up after his Grandfather went to bed to wait for me. He is sitting here putting a Lego car together for Maxie. I would like to kill who ever invented the tiny little Logo pieces and toys they make into tiny things. I keep steping on them. LOL

I will keep you updated on Maxie. He is in room 314 at MCV here in Richmond. Please say and extra prayer for him this week.

Thank you for your support.
Julie

---

Saturday, November 29, 2003 8:51 AM CST

"Love is that condition in which the happiness of another person is essential to your own."
--Robert Heinlein

It's Saturday morning and the boys are both asleep in their own bed. I slept good last night. Maxie had a fever last night and we had to call Dr. Dunn and she told me to watch him and let the tylenol work. It went down and he finally and he got hungry. It was 10 at night and I said what do you want. He had me fix corn on the cob! He had two pieces and Robert had one. The cravings he gets! Thanksgiving was good. The turkey was great with apples in it made it so sweet. The radiation is going yuk! He got really sick Wednesday and in my car! But we made it home and he got sick again. This is only the begining so wow we are gonna have a long month. I worked 2 hours for the week. I made the schedule and came home after I got a haircut. That felt good, nobody rushing me and nice conversation. I might work tonight to get more hours need to work at least 4 to get my insurance paid. Man this is going to be a hard month at Christmas none the less. Anyway, got to get some lundry done. Take care!
Christy

---

Sunday, November 23, 2003 10:22 AM CST

"There are people whom one loves immediately and forever. Even to know they are alive in the world with one is quite enough." Nancy Spain

That quote reminded me of Maxie. Sorry it has been so long and far between. All the new changes and progress have turned everything around. We did our overnight Friday night and he was pretty sick this time. It had been so long since a round of chemo his body was not ready. I had one of my famous I wanna go homes when they brought us a roomie. I just hate that Maxie has to get sick in front of someone and gets embarassed. So they sent Barbara in to talk to me, she is our primary. They knew she could ease my mind. I can never be mad at her or Angela. When we walked around the corner to check in and I saw Roz and Barbara I was so happy. I felt relief. Then Maxie says "Angela" and of course they run down the hall to each other like one of those sappy old movies and hug each other. Then we see Brenda too, and all of the "A" team is there. I felt like tonight would be good. He was so happy! They had been hydrating him in the clinic for almost three hours so I knew he should be close to ready. Once they start and we visit all of our favorites its time for the "A" team to leave. Then I ask if Michelle is coming in tonight. She is our favorite night nurse. She is alos signed on for his team. Nope no Michelle tonight she is off. Of course we get a nurse we have problems with before. And the same thing happens again when he throws up we get ignored and I clean it all up. I am angry and call for a resource nurse or a doc. So his nurse comes in and ask if I have a problem with her. I tell her I do not get paid to take care of him and that I just want to comfort him and hold him not clean up behind him I do that at home. When I am here I want them to do that. They are the pros here. She apologizes and things end up being great! The power of communication. So the rest of the night we had a good night. Dr. Russell came in aruond lunch and talked he sits with Maxie he asked if there was anything he could do for Maxie it was so cute. Maxie gave him thumbs up. I love that he gets to Maxie's level. Here is the news I am not excited about. No surgery is planned. The duct that Maxie's tumor is attatched to is not actually attatched. The tumor is in the duct in the walls of the duct. So you can't do surgery on it. My heart sank and I felt sick. But he said between radiation and chemo he feels that we'll get all the cells and hopefully none will spread. So good and bad news. The tumor has shrunk down 67 percent! Radiation is every single day for the next 6 weeks! That means I will be out of work. He will be sick because of where the radiation is going. He will be nauseated. What a wonderful holiday and my poor car is gettng so many miles on it. I am so glad I bought it now and its reliable. I need an oil change, and a tune up. Anyone work at Firestone or Goodyear that hook me up with that? Smile? You figure I can find a place that would donate tires oil change or gas. Anyway I will write more later. I am tired and thinking alot. I just want Maxie to be happy and now its all about him. If I only have a short time with him I am damn sure gonna not worry about money and stuff. If I file bankruptcy than so be it! If I lose my car fine as long as he has good memories. Gotta go....feeling weepy!
Constantly~ Christy

---

Saturday, November 15, 2003 7:25 PM CST

It has been a few days since I have had the time to relax and sit down and write. I just finished a big casserole of baked spaghetti. It's cooling and I have a few minutes. Well I got a call Friday about Maxie's MRI and there is an unexpected thing that has happened...Drum roll please....His tumor has shrunk over 50%!!!(I am golf clapping) The were shocked and happy for us. Now the bad news is that there is no surgery. The tumor is still wrapped around the major arteries and the duct. So they are going to start radiation immediately. We have an appointment Monday for measurments. Ok the spaghetti is done, and Maxie is a garbage disposal. I will write more in the morning. Goodbye~

---

Wednesday, November 12, 2003 0:16 AM CST

Here it is 1 in the morning and Maxie and I are wide awake! We neither one can sleep. We went to Stoney Pointe today to get a CT and Maxie's port didn't work. So they were going to try an IV and he flipped out and kicked a nurse and fought the other two. I was so angry at him and mad at myself for getting angry. Couldn't wait to leave and mad at the whole thing. So that is the second CT we have missed. Really mad and very tired of all this cancer crap! I wish it would all just go the heck away! Fed up with the school stuff the test stuff and the money stuff! A bill collector called me today and I told her nothing has changed and he is not cured leave me alone! I just sent them all I could two weeks ago. Capital One is crap! Can't wait to pay that one off! Our ebay stuff is going ok it keeps something for mom to do. The donations to help me stopped so she does the ebay to help since I am only working 20 hours a week. If I work more I can't qualify for the medicaid for medical bills. It's like a vicious circle. Don't fight the system but don't cheat the system. Anyway, I am going to look for some coats on ebay. They have all the jackets and yet not a coat one. And will they ever stop outgrowing their shoes? I love the pajama's someone sent. Robert looks so cute in them. Ever heard of positive stories? It is a website about children like Katia and Max and other brave kids. Check it out its great. Anyway everyone its late and I am feeling sleepy so. Love~

---

Sunday, November 9, 2003 11:48 PM CST

Hello everyone sorry its been so long. Just working and stuff. Maxie went to get his CT and MRI the other day. I refused the CT scan. When I got to the CT they informed me that he had to drink the glow stuff. We haven't had one of these outside of being admitted so we didn't know. Then the guy said we have to start an IV, and of course I said no your not! He has a port, and no IV's! I said you will get one try on his port and one only! I was livid at not knowing all this. They nurse comes around the corner and says ok come sit down. I said he will need some cream or spray at least. She said the didn't have anything like that. I said well then cancel the test, he will not get a dry stick ever! So we left. I went up stairs and told them of my anger and how I left. And that before we get to MRI I need to know if he needs to be accessed. She said no, we get down there and they said yes. So we went back to clinic and let them num him up and access him. So that went smoothly. Thanks to Robin, who Maxie is getting close to. He looks for her the instant we get there and sees our nurse Cassandra. He trusts Cassandra but loves to look and listen to Robin. Look out Angela there is a new girl in town.(smile) We love all the mail from "Make a Child Smile" . I checked the mail yesterday and opened the box and it said I had 2 packages. So I get them both out and I see they are from Aulstralia. I rush home, knowing I would be late for work as usual. I call Robert from his woods outing. I think he just likes to look for bugs and lizards out there. But all he finds is poison ivy. I yelled Robert mail from the Zoo in Australia! You should of seen him run! I got that warm mom feeling. I went inside with all these letters and 4 packages. Maxie said it's like Christmas. We all gathered around and watched Maxie and Robert open their goodies. The hat came out first in Maxies package. It is a really pretty green hat and it is signed by Steve (the croc hunter) and his wife Teri. And they wrote Maxie's name and all. I started crying. I was so happy that he was so happy. And the nicest woman name Jessica sent a letter to each of them from the zoo. And also they have a pretty little girl and she picked a book out especially for Maxie. I was so excited. They are so nice, Maxie asked for Steve for his make a wish, but they said it wasn't possible. So they did that for him. If I had $5000 I would take them to the zoo and meet him ourself! They are awesome and they are "real" people and I am forever grateful that they gave my family a wonderful moment during such a horrible time. I have been nice the last few days. I had a great time at work tonight. And was actually glad to be there. Plus Neil and Tina were there. Just missed Keisha. Audrey looked tired and was stressing. I can't wait until Maxie's dad signs the papers and we get to go on a real family vacation together. I can't wait to see how things went for Cheyenne and her family. And they went to meet Kody! Anyway, I am tired! GOODNIGHT! Thanks to everyone who sent the posters games and cards!

---

Monday, November 3, 2003 10:53 AM CST

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart."
--Helen Keller

These quotes give me fun things to do. Maxie is feeling good today. He got a cd in the mail that was made for him with all the stuff he likes in it. Even his nurse Angela is in it! I kinda got in trouble yesterday at work. I will probably get it when I get to work today. A customer was rude to me so I went back off on him. Told him I didn't care about who he told, that he was the least of my worries. So I was out of line and he was too, he put his finger in my face!!! My friend Tina from work was standing there with her eyes so big, she has never seen taht before. Just him pointing in my face. I never take crap and now days I really don't. I am still not sleeping. I went to sleep at 5:30 last night and woke up at 7 am to get Robert's school project finished. I just can't get my mind to stop thinking about stuff.
I hope Maxie's "dad" signs the papers from make a wish. No trip without his signing the papers. Good grief, we know womething will go wrong there. Well I am off to work so I can get chewed out. I might not have much of a butt left when I get home tonight. Wish me luck!

---

Saturday, November 1, 2003 0:08 AM CST

I am tired and grouchy! Sick of not sleeping. I have even taken some of mom's sleeping pills. I can't sleep! I have gotten some nice stuff in the mail this past few days. Thanks, it helps lift the burden. I am amazed at people how they help. People you know help at first, but in the long run its people from here. Thanks everyone for the mail and snail mail. Robert went to his best friends for the night and Maxie me and mom went to the village and trick or treated. He went to a house and his principal was there. Maxie thought that was so cool. He is a very down to earth man. His mom ask about Maxie he said all the time.
*Maxie is the featured child this month on Make a Child Smile. I will add the link on the bottom where the links are. My friend Audrey from work donated the PO Box. I am so fed up with clinic, I mean going. I lost it Friday. I usually don't. It just got to me. There were babies in there I never see babies. I just walked in the quiet room and lost it. Thanks to his nurse Cassandra who hugged me and told me its ok to have days like this. I felt weak and vunerable. Just sick of the sick. Sick of people staring at us in the store or restaurant. Sick of his school. There is nice ladies who work in the office. Love them. But as for the school it was a front at first. Now we do not get any phone calls or emails. We use to get a phone call everyday, now we get nothing! We are happy with homebound. Tater is awesome. Cute too(smile)! Why are all the good ones taken?
They are already married or have a boyfriend.(ha ha!) Is it ok to be single forever by choice? I never want to go through the dating crap again. Well I have thank you notes to send. Have a great weekend. I am going to work all weekend.
Christy

---

Wednesday, October 29, 2003 2:48 AM CST

I am so tired just got home. How do you know if your making the right choices or not. Can they print a book of what to do and say at the right time? Can someone actually be addicted to control? That is me all the way. I always have to know what who where and why. Is that normal? Maxie is not really like that, but I see me and my mom in Robert. Maxie is more like my brother and my dad. Just takes it all in and goes with the flow until its out of control. Robert has my temper and attitude and a little of his dad in him(yuk!) But, Maxie is a little cheezy though I was driving home tonight and thinking of all these things. And hoping they do not turn out like me. I mean in the reasoning of anger, control, and clingy. Robert is so sweet and polite, but get on his bad side wow! And he is like me can't let things go. I can't let stuff go at work and I can't let the past go. I hang on and on, try to be friends and then when I get "s*#!" on, when I have enough I finally get mean and then I lose control. At work I am the same. I go on and on, even if I am wrong I do... Now Maxie tries to be the diplomat, loves everyone and says no wrong. But, his bad side is the lies. Scarry politician in him huh? I love them and now that I am 34 I need to make right choices and get the bad stuff out of my life. I need to quit worrying about what everyone else is doing at work or that I use to date. I need to think about me and the boys and being able to take care of them. I have so much moral support and I ignore it, and now its getting to me that I make such bad choices for myself. In turn means its bad choices for the boys too. So no more trying to be super nozy boss at work and no more trying to be friends with people I shouldn't. Try to focus on being a caretaker for Maxie and Robert. I miss my brother I need to kick me in the butt and for him to tell me to let crap go! It's a pitty party!!! Anyway, broke lonely, and holidays are coming woohoo! What a great combo, couldn't Uncle Sam come before Christmas? This is the first year I have thought of signing up for an Angel Tree. Man is that depressing, I always wanted to be the person that bought stuff. Not the person needing stuff. I need a kit kat...goodnight...

---

Sunday, October 26, 2003 1:55 PM CST

"No heroine can create a hero through love of one, but she can give birth to one."

It's Sunday Robert birthday he is now 9. Not a very fun birthday. But he seems to like that his brother is having fun playing again today. I have decided to go back to school. I am going to apply for the grants and aid this year while Maxie is sick so I will be ready next year. I have to got to make more money and be able to live and do things without counting on someone to help. Single mom ya know I have to do something. So I am open for any advice. I am thinking of Johnson & Wales Culinary School in Norfolk. I can get my 2 year degree in culinary and then 2 year in Hotel Rest. Management. You know I have to be the boss whatever I do. I am not too hip on the nurse idea. Too many bosses. Not for me. Anyway, I better go I have lots of forms to work on for medicaid and school. Have a great day!
Christy

---

Friday, October 24, 2003 0:56 AM CDT

It's late Thursday night and I am the only one still awake. Looking at my bank balance and ordering new checks looking at ebay. It's my quiet time, crying time, thinking time. Maxie is asleep with mom and dad tonight and Robert is in my bed. There is no school tomorrow, so he is glad that I am off too. I have been working a few hours everynight. I like being there, I like being here too. But I have control of that there. Maxie went to school Wednesday for half a day. He was teased so I think that made him not want to be there. Some boy name Timothy was calling him cancer boy and some kids were calling him baldy. I said he is lucky I don't go whip his momma's tail for not teaching her kid the right thing. So, we are back to the idea of leaving him at home. Nobody at school seems to take it serious anymore. I guess the thrill of one of their kids being sick is over. Like they made a big deal and now it's over with for them and they have moved on. Well it is not even close to being over. I wish we were in Chesterfield still. I miss my best friend Cheryl and she is going through her stuff and needs me and I can always count on her. My boss and Cheryl are two people I can count on. And my co-worker Audrey too, she is so tolerant of my attitude and told me tonight when I said we were having a hard time even paying the electric bill. (I use to buy the groceries and pay a bill or whatever. But now I can't help with anything. So its hurting my parents because they have their own bills and now mine too.) She said I don't know if you need help until you say something. But how do you tell people hey, I need $100. It's very strange, and not me at all. People that I have in my life are single or not making alot like me. But, they are so nice that they say things like she did tonight. She was talking about my dad tonight and got teary eyed. I am glad to come home and see Maxie is off TPN and feeling pretty good. His hair is going a little more now. So by the next round we probably won't have any. His next MRI and CT are November 6th. Then a week later will be his surgery. So we are praying that the scan shows he is ready. We had a nice stay in the hospital. Good nurses the whole time. And Maxie got to see Angela and Barbara. He loves Angela and we feel she is part of his healing. We feel like she is part of our family. Actually he said he didn't want to leave her this time. And I think he is worried about her for a change. We love the staff at the hospital. Our Social Worker Robyn is amazing just listens to Maxie and Jim makes "me" feel better. He is always smiling and seems so concerned not just because he is the chaplin. MCV is a great place and I am glad he is there. You remember when you were a kid and they had candy necklaces? Don't you think they should make those out of midol? I mean like a candy PMS cramp necklace...
Have any marketing ideas? Smile.....Goodnight~ Someone asked about our address for help it's listed above and I will keep it up so I won't have to add it everytime. Thanks!

---

Sunday, October 19, 2003 3:34 PM CDT

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has opened for us."
Author: Helen Keller

It's Sunday and a crapy day. I am sick, and Maxie and my parents and Robert went to the mountains. They are seeing the sights and I am seeing misery. I was suppsoe to close tonight at the store. I usually call in because of Maxie but today it was because of myself. But I worked Friday for Robert so at least I did that. Feeling kinda guilty about having to call in. But if I can't stay healthy then that is not good. I need my rest, and I have not been sleeping worth anything. Maxie is feeling good, we have an overnight tomorrow and hopefully they will take him off the TPN. I hope I hear something from social security soon. I am beyond broke. I had to put brakes all around on my car and a new belt. That was $100 I do not have. I am thinking more and more of bankruptcy. I hate that. But I only worked 13 hours last week. How do people do this? Normally right now I could be making overtime at work. It's very depressing. I stopped talking about money in front of Maxie because he was starting to worry about it too. He needs not to worry about that. Hopefully they will tell us tomorrow when the surgery is going to be. So many things up in the air right now. Have a great weekend.

---

Wednesday, October 15, 2003 11:43 PM CDT

"In my wildest dreams, you always play the hero. In my darkest hour of night, you rescue me, you save my life."
--Bliss and Cerney

Well I was told I do not write often enough. I really am turning into this grouch from HELL. I am mean moody and take no crap. Some of you think of me like that already but it is worse. So I will try and be nice now while I type. Maxie has been tired all week, and his counts were 7.6 on his hemogloban. I know I can't spell, but you get the point. We had our first tranfussion today. That was pretty scary. The blood is so thick and dark and it looks scary going in. Its like CANCER REALITY! I was in a really fowl mood today and had to listen to gripes on my voicemail from work and people I know etc...That is old and that I am not trying to hear. Is it possible to be friends with your co-workers? Can you be friends with people you dated? NO! I can do neither, nor can I seperate the two. I am too emotional for either. I have also realized I do not like brown nosers. That is making me more insane. Why do people do this? Why do people listen to here say? All these things have led me to belive that I need prozac!! YEP! I go into work last night and I have someone I am close to not speaking to me or the boys who were at work with me! Of course me being the on the edge loon I am right now start cussing like a sailor in the backroom saying I don't need this stress right now in my life! Not trying to make friends with anyone. But to not speak to my babies made me livid. Just can't deal with childish petty stuff right now! When we got to the car Robert said ------ did not speak to me! I was so mad!!! I hate work! I hate kiss butt's and I hate childish people! I hate cancer and I hate chemo! Then to top it off the check company I was so excited about that had the NCCS checks messed up my checks. They printed my name twice two different ways. So it looks like I have a joint checking account with a woman! I called them and told them. They offered to fix them for half price! I was like cost me!? Satisfaction Gauranteed, where did that go? Well I said a few choice words to the lady claiming to be the president of the company. And told her I would sent them back. BLAH BLAH BLAH! Maxie just follows me around and keeps me grounded, can't go anywhere without him. Not even the bathroom. He took us to Red Lobster. It was not all that great but he was happy. I have gotten some advice on my car payment some people say to ask them to defer payment. It gets harder as each month goes by. Calgon take me away!!!

---

Friday, October 10, 2003 9:37 PM CDT

"If a free society cannot help the many who are poor, it cannot save the few who are rich."
John F. Kennedy

Well it has been a couple of days since I have felt like sitting down and thinking of entertaining stuff to say. Maxie has felt pretty good. He has enjoyed his home bound teaching. He was really disappointed when he couldn't make it today. He was like "Tater" ,that is his nickname, can't come? He was making a face like he was sad. That made me happy, they have fun together and learn alot. Maxie is taking in so much. I think that staying at home for school is much less stress off all of us. You know the phone calls from people have stopped, even from school. Amber and Maxie talk of course. Three or four times today. He has a glow when he talks to her. That is the only reason he says he wants to go to school. Before there were other reasons, but after our visit last week he has changed his mind about school. I talked to the MCV head teacher, and she said she would take care of it. People at the clinic look shocked when I talk about everything in front of Maxie. They seem to want the child out of the loop. Not in this house, he will know all! I mean why whisper if it has to do with him? He has a voice too. He and the TPN are not getting along. Well really it's me and the TPN are not. I have beat the machine I am shocked it still works. It gets mad alot, Max has the most terrible port. Works when it wants to. So I had a stressfull few nights with that damn thing. Right when I would get to sleep it would beep. Then I would do that like three or four times and finally get up and disconnect. Get up get him settled for the day and then get dressed go to work and do it again that night. So not much sleep. Plus fighting a cold, that I wasn't resting for. Love being at work. Last night training my friend Audrey who got promoted, she is slow but picking up great. She will do good. Only person that mad me mad is my boss, but that is a whole nother issue. I am not letting people get to me right now. But he was nice and asked me about my car payment. Offered to pay it, but it's a pride thing. I have not paid it this month and can't see coming up with the money working 10 hours a week. But oh well, I know something will come up I am sure. Robert and Maxie have spent alot of time together doing stuff the last few days. That is always a plus, Robert has such a nasty attitude sometimes. I worked with Keisha the other night and I was happy, just talked and talked like I haven't seen her in forever. Just love that her Neil are in my life. The just tell it like it is, just like blunt me. Funny I take no crap from people but men I get involved with. That is backwards. If a customer gives me any type of lip I am quick to go off, just like the nurses and docs. But my men I just back down from. When I was young I use to be in charge of my relationships, from my high school sweetheart on until I got married. Then that changed me alot. Maxie is really a push over too. Robert is very dominating like me and mom I hope he stays like that. And Maxie will stay soft until this cancer is gone. This has made him so mmmmmmooooossshhhhhhyyyy...
I haven't had the time to check on my online family. My thoughts are with Kody and his family and the Fiveashes. They are so there for us. Mom just loves that Mr Fiveashe is so involved in his daughters illness. That is really cool. Jackie is back in the hospital, think I might call and check on her. Everyone take care. Keep the get well cards coming. Turtles rule! Robert likes all kinds of bugs. As long as they are real! His favorite is praying mantice. I am sure I spelled it wrong. Can you believe that someone stole the play stations and nintendo 64's out of the clinic? And of course the games and tv's! I am shocked!! Going to try and find out if I can get some more donated. Anyone have any ideas? Does anyone work for circuit city or best buy? It sure keeps kids happy while they get chemo and all their meds. Just a shame. Well I am going to check out how he caringbrridge kid are doing. Take care everyone!

---

Monday, October 6, 2003 1:20 AM CDT

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Well, here it is late at night and I keep trying to think of excuses not to write. I have nothing very nice to say except that Maxie is feeling great! Eating good, he is at home now and on TPN. But his port is not working so he didn't get it last night or tonight. Going to call first thing in the morning to see if I can get him in the clinic. One of the NP's will tell me what I need to do. They seem more like the docs than the actual ones. He is back from 62 lbs. to 69 lbs. that is so awesome. I think the nurses on his floor were ready for us to go. There are a couple at night who really need to find other employment. Maxie was getting his second full round of chemo last week and of course he is going to be sick. So, he was throwing up, my mom was on hospital watch that night and pushed the nurse call button. Nobody came she needed towels sheets zofran all the things he would need. She just pushed the button and said "I need help in here". No repsonse, so after he finished she walked around the corner and they were all sitting around talking. Nobody even busted a move. He could of been having another seizure or chocking on vomit! She called me mad as hell, and can't say I blame her. I call the nurses station and basically tell them I am not going into debt and lose my mind while I pay them to chit chat! We are there to love and hold him and be his strength not his nurses! I was pissed, and told them to take care of him! You know my temper and mouth is not always nice. So my mom walks to the laundry closet and curses everyone out all the way down the hall. I would loved to been a fly on that wall. Wonder if she had her meds, there are lucky that she most likely did. The next few days after that in the hospital was stressful too. The TPN started and then they come to stick his finger. Heck no, no sticks with anything he is stressed enough. Get it through his port or not at all. So they do that, and I leave to go home and dad takes over and a nurse comes in and he lets them stick him! Here I go off the deep end! Mom gets mad relieves dad of gaurd duty, he isn't tough enough. They come to explain they have to take sugars and they need to check it to taper down his TPN. We argue no, and they said its up to us. The doctor mom and I and Maxie don't like comes in and tries to push Maxie's tummy. Mom immediately says no, don't touch him! The NP was in the room at the time and looked shocked. We have just had enough of poking for no reason she is not his Oncologist or the surgeons. Just trying to touch him to bill my insurance for exam fee and she is rough. Well after two weeks of us with our fed up attitudes I am sure they were ready to get rid of us. I love the nurses, the young ones like me and the older ones like mom. Barbara and mom get along well. I get along with Cabble and Angela and Valerie. We both like Michelle she is a light of comfort at night. Maxie of course like them all, and Angela and Helen he likes to check out. We have had some good student nurses too. Jim the clergy for Oncology always seems to make me smile when I am feeling blue. Always asking if I need money for bills. Gosh I know I do, but pride you know its right there. I didn't even make enough on my paycheck to pay my medical insurance. I have to call and ask if I need to send a check. How do people do this? I went to social services Friday after Maxie went to get some work from school. They told me they could get some help for me. I told myself I would never need to get welfare as long as I lived in VA. I hate that, but being single I have no other way to do it. I was suppose to work today but I messed with Maxie's port all night and told Robert he better cover my shift. He is so understanding, never makes me feel guilty. But I love working there and miss it alot! I am just torn between both. Maxie went to school the other day. I think we decided to go ahead and do more of home school stuff. Didn't get a good vibe there Friday. We didn't go to school for him to go to class, actually to get some work for the weekend to work on. But we felt out of place and intruding. And some attitudes have changed. We loved that his teacher was so supportive and called and all of that. That is what kept us going about school. But she has been told to maybe back off a little that she is the teacher. Maxie noticed, and asked me if something was wrong. I tried to explain that she might of felt too close to us, and had to remember she is his teacher first. So its kinda wierd, but we think it will work out good if he is at home more. I mean to much friction and stress is the last thing we want. So we talked it over as a family and we think for now its for the best. I am sure he will want to go sometimes, and I will send him if he feels good and there are no test. But other than that he will do great with Tater. People are so sweet sending us cards and asking about stuff for Christmas ideas, and pj's for the hospital. Thanks alot. It is so hard on me with no husband with that second income. How do people manage? It keeps me worrying, and now that the phone rings I know its something I am behind on. I keep the car payment up, can't lose that. Makes me scared because Virginia garnishes wages, good grief that would be awful. Anyway, I am still not in good spirits, but hey I gotta break down sooner or later right? Thanks to Mr. Fiveash for all his support and Kody's mom who has her own fight going on, but takes time to help me. Everyone, Robert likes bugs and the Crock Hunter Steve. People always forget him too....Love them both so much they are cute when they get along. Makes me miss my brother, and I know he would do they hospital watch without hesitation. He would love them both so much and be proud that I have not lost it yet. Probably would of laughed about mom losin it though...smile
Constantly~

---

Sunday, September 28, 2003 2:56 AM CDT

"A baby is born with a need to be loved - and never outgrows it."
Author: Frank A. Clark

What a day I missed at the hospital. Mom is there with him still and his port got stopped up. And we are not having good luck as yet with this port. They took it out for a few hours. And then she said it took 4 nurses to hold him to put the new needle in. Hmmmm, if I were in his shoes I wouldn't like it either. Needle in my boob? NOT! Well, we had lots of test run to find out why we had the seizures. They still don't know for sure. They say it might be due to the high blood pressure. 159/116, I would say that is high! So they have controlled both by more meds. We are pooping now, YIPEEE! And he is eating, fried chicken until he sprouts feathers and poops white. And a lovely friend of mine came to the rescue with okra, if you know Max he loves okra! We got the okra craving cured. Now I have to make "momma's" spaghetti while I am home for the weekend and take it up to him. Tomorrow dad is staying the night. It is first time to do it. Maxie will think that is cool. He just loves my dad, if you don't know my dad personally he is like the best dad. We are like the family on Roseanne. My dad is like Dan and he is a softy like him too. Robert is glad to have me home. And he thinks its cool that I can play his video game good. Its funny I come home and lay in moms bed and sleep so good. No bed is better than your moms bed. I worry about work though and have worries that my insurance will get cancelled. So I have got to get to work. Auto Zone has really been good to me, but I miss work. But I guess I am better off there is no a/c there and I am too "foo foo" for that! Where are all the people that visited me in the begining; and now they barely call. But I have lots of people I have met on line. I am tired and I will write more later. Thanks to everyone who send Maxie things and Robert too. I can't imagine how awful Christmas is going to be. I am not working and that is a worry. I need a man to worry about these things. Mom is not a good husband. NOW TAKING APPS....smile. More later...
Constantly~

---

Sunday, September 21, 2003 8:14 PM CDT

Hey,
just wanted to let everyone know that Maxie is back in the hospital.... He had a possible grand mal seizure that freaked me out. One at home and two on the way to the hospital plus in the ER. He had an ECHO and EEG with a CT on admission, all negative so far. He will be going for an MRI tomorrow at 5pm (hopefully sedated!!). If anyone knows where we could possibly get a GOOD hook up on a laptop please let us know ASAP. Its hard being in the hospital without nothing to do. My nurse, Angela, is actually typing this for me...

just wanted to let everyone know our where abouts...

constantly~

---

Monday, September 15, 2003 10:53 PM CDT

What a long weekend; I haven't felt like writing. We went to clinic today. Maxie hasn't had a BM since Thursday, and hasn't had any food in 3 days. If the cancer won't get him the nutrition will. They couldn't give him his vincristin because of his constipation. So, that puts things behind a week. I go back to work tomorrow, how I don't know Maxie doesn't want me to leave his side for more than 5 mintues. And I catch myself getting short with Robert. He is the person that is hurt the most out of this. If anyone wants to help, buy Robert a bath robe. He likes Maxie's but with the germ thing, not gonna happen. I have gotten so much advice on financial issues. People say not to pay the hospital bills until everything is over. But I am going to go apply for medicaid for a secondary insurance. I haven't had time to figure out how to make this site cutier. But Kody's mom helped with the border and to teach me to put links. So I am going to try one, and add the rest later. I hope that nobody has forgot about us. Mom has lots of stuff on ebay for sale and the money goes to his account for bills and expenses and to help keep up with my stuff. I hardley work very much so it is hard. So the people that have bought stuff I would like to say thanks! Maxie likes turtles so anything with turtles is a gleam in his eye. I have met so many nice people through this. They listen and answer my questions. Even some people I haven't seen or heard from have been in touch with me. Anyway I am tired and have to get some rest. My spelling is not good so please do not send emails correcting it! Love~

---

Friday, September 12, 2003 3:50 AM EDT

Here I sit crying and throwing up. That is great Robert has a cold; mom is so exhausted and my nerves are finally bad. After all this time they are just jumping up and down in my stomache. And its not dads cooking I ate tonight.(smile) He moans and groans and then when he gets up he shakes and talks like an old man. His hair is falling out and he is so skinny. He is white, and we know he is not "white". (hee hee) There are dark circles under his eyes. Do they actually survive when they are this ill? Will he survive off of Robert having a cold? I was at Wal-Mart tonight walking around and thinking to myself my son has cancer. That is what happens to kids on tv, not mine. I am walking like a zombie from being exhausted. No time to sleep, he moans and figits all night long. Right now he is still awake! So, me the zombie walking and pushing the cart. Of course I think of something I can buy Robert so he feels happy. he needs a new lunch box, so he won't carry the same one for three years. I find a cool one and feel happy. I go to check out and the man says how are you? I just want to scream and say "I feel awful! My son might die! My other son is turning into a monster! I want to be rich and not worry about my car payment! I want a decent man in my life! I want my mom to be healthy! I want my dad to tell his boss to stick it! I want everyone at work to get along! I want my kids to have a decent father that at least pays some child support! I want my son to feel GREAT! I want to be independent!" Do people really want to know when they ask? How come I have all these feelings? Why do I feel the need to be normal and in control of stuff at work and the cancer monster, but can't fight the feeling of letting things go I should? Why can't I be strong in all things? Maybe I need to start smoking or drinking? (hee hee) I was glad to be at work today. Keisha is always so entertaining. Audrey is a great ear, and Mike makes me smile. I was glad to see David tonight I could talk to him for hours. I like when Roberts not there. I know he is getting time off without worrying. And I can rule the roost, you know that is my thing. I love to be in charge of things, always have. I need a waitressing job, loved that money. And plus I love to do that, I am so good at it. Like to make people laugh, go figure. Well I get home everyday and check everyones sites and see how Katia is doing and Jackie. I am glad that I have some other people to think about. I always I am in aww of their pretty pages. Well I need to find some lady bugs. I have a little girl in Florida to send them to.
Sweet dreams to all my fighters with this monster.

---

Thursday, September 11, 2003 11:42 AM CDT

Today is Thursday and I have to go to work. It's the day I make the schedule and its my favorite thing at work to do. Maxie was up ALL night moaning and groaning and couldn't get comfortable. The bone pain is really getting to him. Not so many mouth sores anymore. They are just basically in his throat now. He says that they are not so bad. He went to school the whole day yesterday and I think that that really did him in. He got off the bus and told my mom that he was really tired and needed to lay down. I called his teacher last night. I just love her! You know I am not too much into the church, but I believe that she was brought to us for some reason. She has gotten a cold and is really worried about it. She said Maxie slept alot yesterday, and that when he woke up Amber got him up to speed. She said that Amber carried his stuff to the bus for him and that when they were walking he took his hat off and put it in her. A few minutes later she put ir right back on him saying that he needed to keep his head covered because of the sun. You know people are always asking isn't he kinda young for a "girlfriend"? Well, I wouldn't trade her for anything. She makes my son happy, and if they want to say they are boyfriend and girlfriend than so be it. Its sweet and she passes no judgements on him. Too bad we can't keep that when we get old and in relationships. That is another story... I was talking to a friend of mine on the computer last night and I was telling him about me being so clingy and needy. I said you know most people don't go through in a lifetime but one of the things that I have. I have been through so many life changing things in my 34 years. The milestones that turn us into the people that we turn into. The kidnapping and rape when I was 10 made me non-trusting and clingy. And my brothers death(murder)(suicide)gave me an abandonment feeling. And my marriage that was full of lies and infedelity gave me more of these things. Then this monster that makes my baby hurt! How much can one family take? My mom tries to keep it cool and dad just stays quiet on the sidelines and gives him shots to help him. But they hurt him, and that hurts my dad. I mean is it just a curse? (smile) It sometimes feels like punishment for me being such a bad adult. I was a good kid, just made alot of bad young adult choices. Go figure I had it backwards. And now Maxie is hurting and how do you tell a 10 year old kid that he will be ok? How can I say that and rub his legs and read so many things telling me he won't be? Anyway, that is all the things I feel that are bothering me today. I guess I will go to work and be bossy..HA HA

---

Tuesday, September 9, 2003 7:54 PM CDT

Today was a GREAT day. We went to school today to listen to the MCV teacher talk to the class. The class behaved so well and asked questions and three parents showed up. It was nice and it turned out well. Maxie was humbled by it all. He acted so normal and didn't act silly. I was so happy to see Maxie and Amber talking and smiling. Alot better day then the night before. I had to act a fool at the hospital. They didn't bring him lunch yesterday, and his test was over and he was already told by the surgeon he could eat. So we took a nap and dinner came and then went. I was like what is going on! Plus I was tired and ready to go home. So I walked down to the nurses station and there was the grumpy nurse that I do not like. I stood there and waited and was ignored. Finally she glanced at over at me and I said where is Maxie's dinner? He didn't get lunch either. He is through with test, and is ready to go home he should be on a regular diet. Well the dietary lady said no its a NPO! I was livid! I said does anybody know anything around here! No lunch and now no dinner and he is hungry! Well then she says its a NPO. I said forget it, I peeked around the corner and said to the Dr. on the unit I am taking him home even if your saying no or not! Of course she gets up and follows me and I am yelling. The oncology nurse practioner is sitting there and she follows me. They ask me what is going on and I tell them. They say they understand, I said he just needs to go home. He needs to go home and eat and have a BM and get rest. He has no fever and needs to go home! Well they said to give them time to call the surgeons. So a surgeon came down and passed the buck to another surgeon. Said he would be down soon. I was mad by then, and then to top it off I went to the galley to get are frozen dinner and I had Maxies name on it and someone threw it away. Ok that was it, I asked to see Dr. Russell the oncology dr. on duty. He came in and heard me out, and said let him check into it. He came back 15 mintues later and said we can go home. I guess me acting stupid helped, but made me feel bad for the nice Dr. I yelled at. But that nurse has just pushed my last button. I am very tired from the long day and I am off to bed. Goodnight everyone!

---

Tuesday, September 9, 2003 2:01 AM CDT

I guess you could say we are glad to be home. I feel when we're gone those few days there is so much mail and stuff waiting for me when I get home I will never catch up. Fill out so many forms to get any help I can. We have good news! They took our billiruben tube out! Maxie was not calm by any means he thought they were just going to shoot it with dye. The Dr. shot it with dye and then snipped the tube and pulled it right out! Maxie was screaming don't take it out, and the Dr. was already through. I was so glad. I was already for it to come out. That was yesterday morning about 9:30 am. The surgeon came in during all of this and said he should be able to go home this evening. He helped calm Maxie down to get the suture out. Maxie hates anything silver. The little scissors freaked him out. I will write more tomorrow I have so many things to fill out before tomorrow gets started. I would like to take the time and thank everyone who has put money in his account at Wachovia. If it wasn't for that I wouldn't be able to pay the car payment to get him to the clinic or buy him food and all that living with this monster brings about. This will be a long year and all the help we can get is much needed and appreciated. The people that have done for Robert and paid a bill or bought school supplies and watched Robert, are just as important. Now if we could get someone to help remove dust bunnies...Have a great night and remember all the angels we have watching over us. And after being in the hospital this weekend there are many people that are going through non "fixable" things that need many prayers too. Goodnight.

---

Saturday, September 6, 2003 3:23 AM CDT

Well here I am up in the middle of the night thinking of all the questions I should of asked yesterday to the surgeon and Dr. Dunn (Peds Oncology) He is is still in the hospital with a fever. It was 101.7, scared me I was at home bonding with Robert and he gets a fever. Wow is there guilt here or what? Well they want to leave the line in, between everyone pushing it and pulling it, it has gotten yucky! So it is infected. Great we thought we were making progress. Mom said that when Maxie got down to Radiology he looked around and said hey! This is where you put the tube in! Like he wanted to get out of there! So he told the radiologist that he wanted to be asleep and he told him he would be in a twilight sorta of sleep. Maxie was like NO! I mean asleep!(smile) From what mom said so many tests with CT and radiologist. Maxie was tired. Then he is taking this new liquid med. to make him eat. Then they tell him he can't eat because of the test! My my, are we confused now or what! I finally got up to the room this evening after making a run to Target(mom loves Target)to get batteries for his cd player and a new cd. Hit NOW 15 I think. Robert got a new bug catcher at TJMAX(they have bug catchers, go figure). Robert said that all day tomorrow that he will catch bugs while I clean. Joyful took hermit crabs to school now he wants to bring in bugs. When we did all our little errands and stopped by KFC for some food we get to the hospital and see that one of the unfriendly nurses is there. I speak and of course with her no personality she has she does not speak back! I am walking around the corner hoping his nurse is someone besides her, his primary is off today and also his second, and his girl Angela. I think Angela makes him to glad to be there sometimes. I finally walk in and he is smiling. Love that! Mom looks tired and ready for a shower. Glad she is in a semi-private room with an empty bed. Glad to bring her pills before we end up visiting her in a 12x8 cell. I start to eat and his nurse comes in and yea! Its Cable I like her, nice down to earth nurse. She talks to me I like that. Maxie starts to ask if he can share my chicken then we both eat it all then he looks mean at me and says I am going to starve to death in here. Oh brother! But I laugh and I am glad that he is at least hungry. We visit, and Robert and I head towards the door and he doesn't want us to go. Pulling at my heart strings, I tell him I need to go. Sometimes I know Robert misses me, we were bonded before this. Now there is Grandaddy so I have to get in where I fit in. All the way home I am thinking it's spreading and they aren't telling us. And they have seen it during all these scans. I put the thoughts in the back of my mind while Robert I sing to Maxie's new cd. We go to Wal-mart and I look at pajama pants the little pants guys wear to bed. Well the ones they have are cheap feeling. So if anyone wants to bring us or send something that would be it, but a good quality. In the hospital the get worn two days plus we are going to have to wash everything twice now days. Anyway its now 4:30 in the morning and I am babbling. Goodnight everyone, any ideas for make a wish? The interview is next week. I wish I could work I am work sick. Miss my job and my boss has bent over backwards for me, I am truly lucky to work for him. (Maybe that is why I stood on the sidewalk and cried when he was transfered.) I miss my co-workers, Audrey and Keisha keep me laughing. My best friend Neil has a new girl so I have been booted to the curb.(smile) But now if I need to talk I can always call Maxie's new teacher who is a great woman. We all need a 5th grade teacher like her. Just want to squeeze her she makes me and him both happy. Anyway drop us a line in the guestbook! Say a prayer or two! LOVE~

---

Thursday, September 4, 2003 8:51 PM CDT

Well I got home from the hospital about an hour ago. maxie ended up staying another day. We started in the clinic on Wednesday afternoon. Drew blood and waited for white counts to come back. They were good, we did have a little trouble getting Maxie to let us start port. He wasn't in the mood for any needles. We finally got up to our room, a semi private. Yuk! With a perverted yukky man and his not so nice little boy. We took a UA and our urine level was 30, and it needs to be 10 to start chemo. I also found out when we got down there that this is where the full doses of chemo start! Oh no!! That made me nervous, very nervous. Ok now where is my support team? Nobody from my job and my so called friends have slowly lingered away. So I look to my great nursing staff for comfort. All our favorites were there. Walking by the nurses desk we heard, he's here! We then saw Barbara our primary, Brenda our secondary, and Maxie's crush Angela. I felt better. Well we didn't get chemo started until 10:45 after the fluids helped with the urine problem. He was in a great mood. We laughed and giggled all night about Animal Planet. I couldn't sleep and neither could he due to "Old Man River" that was snoring so loud next to us. He finally fell asleep around 3:00 I did about 5:00 am. So we get up to the fact we have a CT today to see about our billi bag and how the tumor is doing. So they try and convince him that he needs to drink the stuff for the scan. It is a mix they can mix with anything. After no luck with apple juice we tried shasta lemon lime. Well, after threats of a tube down the nose he finally drank one cup. They came and got him and said bag looked clear. And radiologist said bag she be out. Afer some going back and fourth and trips to CT again bag was stop cocked and bag in the trash.YES! The tube will come out tomorrow, and a heavy dose of anti-biotics will be given all night long. He should be home tomorrow. I will write more then! I am tired and have to go to work and make the schedule. Goodnight....

---

Monday, September 1, 2003 10:41 PM CDT

Well, now that we have a name for our cancer Embrynol/Botryoid Rhabdomyosarcoma it is a cancer of the soft tissue. We have a tube in us now to drain the billiruben. And we have finally had a long and overdue BM!!
We also have a chemo protocol IRS-V/STS. He is taking:
Actinomycin-D and Vincristine with Cyclophosphamide and surgery and radiation. This is a 56 week protocol. WOW! Plus he takes 3 kinds of anti-biotics, and the white count boosting shot. And of course we give him that. That is not a pleasant thought. We go home the second Tuesday in August the day after our first chemo treatmnent. Maxie has made friends with nurses he likes alot. he has a crush on Angela she is a nurse that is new. And our primary nurse is Barbara been at the hospital for 15 years. Our secondary is Brenda she seems to get stuck doing all the bad stuff to him. Enema's tubes down the nose changing his porta cath needle. She is protective of Maxie and we love all three of them. They all make us feel safe and secure with our care. When we go home our first day we spent our first day unpacking all teh goodies he had recieved. He sleeps alot and smiles at his brother Robert, who sems very happy that he is home. He sleeps in my bed and we have alot to learn. He throws up the second day alot and the pills he throws up. The nausea med doesn't work, he seems to not take well to it. He is so tired and won't eat. I need to work but how can I leave mom with Maxie who is sick and Robert? Well this tells of our new journies at home. I will continue more later and keep catching up. Tomorrow is school and we are all three going plus we all the whole family have a meeting at 3pm at the school.

---

Friday, August 29, 2003 2:05 PM CDT

Well since I am so behind on catching people up I will go on from the hospital ordeal. While we were in house we had our first surgery to do a biopsy to tell us if the growth was cancer or not. Well the surgery was long and I was so nervous because he was. We waited in the waiting room for hours and I got a call from Dr. Bagwell our surgeon, he said he was going to get Dr. Russell to do a bone marrow test also. Well we received another phone call this from Dr. Russell saying they had seen small round blue cells. Meaning some type of cancer. My heart was still and my knees buckled. Mom was taking everything so hard by this time. Her and I were on each others nerves but my dad showed up and he helped her through that. My friend Audrey from work and her husband were there the whole time to support us. Well a few hours went by and they finally said we could go to PICU to see him. He looked so small he had so many things attatched to him and a nurse that was by his side and worried about the porta cath looking swollen. Porta cath? Well come to find out when they found the cells they put it in to do all labs and draws. It is in his chest and they put a needle in it do lesson amount of times he gets stuck. (Love it) Well he stayed there for a few days and the last day we had an awful nurse in there. Couldn't wait to get a regular room. Told the nice nurse in there that I might end up in hospital jail.(smile) We had wonderful nurses otherwise. maxie was very sore from the surgery and loved the pain pump they had given to him. He would push if even he thought he might hurt. We still had no clue by the time we got to the regular room what type of cancer it was. Well the next day after we had gotten another private room. Dr Russell came to talk to us. He said he knew it was some type of rhabdomyosarcoma. He just wasn't sure of the stage yet. There are 4 four meaning the worst. A few days went by and kept telling all these people that he hadn't had a bowel movement. Well finally after 10 days without one we are gonna panice we had exrays enema's etc.. During this time we have our results of all these scans and tests, its stage III!!! Thank goodness! We were fearful of stage IV. The doctor said they would get a protocol together and let me know the plan. Ok that is gotten ya caught up pretty good I will write more later. He is feeling pretty good today. These days before his next round Wednesday will be failry good.(fingers crossed)

---

Thursday, August 28, 2003 8:55 PM CDT

This all started with one healthy 10 year old that had a stomache ache in late June 2003. Well it keep getting worse so his food wouldn't stay down and he was tired. We took him to our family doctor and she looked at him and said immediately he is jaundice. Being bi-racial it is hard to tell. But in their lighting his pupils looked yellow. She pushed his tummy and said you need to go to the ER soon. She handed me tissues and said that I would need them. This is July 23rd and we are in the ER(my mom and my best friend). They do a anal test and found blood.(I was feeling nauseated myself by that time.) Well we had an ultrasound and a CT and waited. I had went to get a drink and call my work. When I came back my mom had a white face and the nice ER doctor looked sad. They called me to the empty exam room across the room. My mom asked if I was ready. I stood there with a knot in my throat. She said we have found a very large mass in his abdomen. And it looks like its lymphnotic. And I said are meaning cancer? She said a very strong possibilty of Berketts. I was shocked. The first thing I said said how? And fell to my knees crying so hard. I cried for my best friend and he held me while I cried and said why? I was so worried about the doctor having to tell me bad news. She explained she doesn't have to tell people bad things often and she cries when she gets home. I asked her if she would cry that night and she said yes. I knew then things were not good. We were transfered to MCV I heard that it is one of the best cancer centers in the country. That was a relief. We get there at 11p and we were there for a month of tests and two surgery's. This is where are journey began and this will keep you updated on the details of our battle of "our" cancer. We will fight and when the battle his such a fighter and our "turtle". We have been through enough as a family. We won't give up!

---

---

Click here to go back to the main page.

----End of History----