History

Wednesday, December 28, 2005 9:59 AM CST

Sorry this is sooooo late, but it has been a very long week and I was just to drained to even sit here and type. As you all know Maddy had scans last Wednesday and even though I have done very, very, well with controlling my anxiety and what not, I did start getting nervous over the weekend before scans and I was so relieved when Wednesday finally came. Now normally we are given scan results within 4 hours of scans but this day we were told that due to new policy we would have to wait until Thursday for the results. Donny thought that something was up but I was trying to stay out of panic mode so I didn't read into it. Her onc said that her kidneys continue to heal and although there is still some leakage of phosphorus, she has quit leaking magnesium and her blood work looked perfect. She also has the early stages of scoliosis due to the lack of support on the left side which could later on down the line mean surgery or a brace, or both, but it is too soon to guess on that.
So after a long sleepless night, Thursday morning we get the call from her onc., and the first thing he says is,"Now I don't want you to freak out." Ok, on what planet would that comment not induce mass panic?!?!?!? Evidentally there was some growth over the scar tissue above her amputation site and we could either do a PET scan to make sure 100hat there was no cancer cells there, or we could wait 3 months, do another CT scan and see what happens. A no brainer if you ask me. Now her onc was feeling very confident that it was just scar tissue but because he knows I worry about everything he was afraid that 3 months of waiting for scans again would guarantee me a room up in the psych ward, so he was comfortable in doing the PET scan even though the day before he had talked about cutting out the CT scan everyother time because of the radiation she was being exposed to and he didn't think it was necessary and he had said that if Maddy was his child he wouldn't do that to her, and knowing that a PET scan involves high dose radiation, well we all felt it was better to be safe than sorry considering all of the kids here that have not done well this year. He thought we could get in the following week and I must have sounded like a woman on the edge because within an hour they called back and said to be at the clinic at 7am the next morning. I could wait 1 more day, possibly, maybe, OK, I could make it through the physical time, but there was no guarantee as to my mind making it through as well.
To say the least Friday just sucked. They had arranged for a nurse to come in at 7am and start Maddy's IV, but after an hour of waiting and no nurse, one of the radiology nurses said he would do it. Well he blew 2 of her veins just like that and ran down to peds oncology to see if they could come, of course they were way to busy to run over to nuclear imaging where we were at. The nurse who was supposed to have been there at 7am finally shows up at 8:30 and she blew 2 veins right away also. By now I am very irritated, Maddy is screaming like she hasn't screamed since she first started chemo and they are both looking at me like now what?!?! Finally they called Life Flight to come down and after 2 tries in her upper arm, they got the IV in. Maddy was hysterical, sobbing and sweating from all the pokes and the pain as she only had emla on the first 2 viens they blew and she was poked for almost an hour. I was one unhappy mom!!!!! So anyway they bring in the radioactive solution and tell me to move away from Maddy and Maddy has me in a death grip, like I was going any where! I told the nurse I would hold her and she said I needed to be certain I wasn't going to have anymore children as I would absorb some of the radiation as it circulated around Maddy's body and it could damage my ovaries. All I could think is that damage or not I wasn't going to put down my baby, the last baby I dare to have, so I said push it in I'm not moving. Now for a PET scan you have to lay perfectly still, in a dark room, with your eyes closed and no talking at all, for an hour, and every 20 minutes you are to drink a glass of water. Well poor Maddy was so worn out from all the trauma over her IV screw up that she fell right asleep and they never woke her up to drink, which I was very thankful for. I had gotten her to drink over a liter of water to protect her organs so I knew she was hydrated and I knew if they would have woke her up she would have moved and cried and the test would be ruined.
Finally at 10:30 they came and got us, she layed perfectly still for her 30 some minute MRI, a complete angel, and they said her results would be posted in 45 minutes so we went back to her onc's office to wait. He said it usually takes 48 hours for the results and didn't want us waiting there all day, I was like there is only about 10 more minutes left before the results should be posted but he told us to go and have lunch and come back. Well we didn't get but 5 minutes up the road when he called and said she was PERFECTLY NORMAL!!!!!! No cancer cells anywhere!!!!! Oh my God, what a relief!!!! I had been such an emotional wreck and it was all I could do to not start sobbing, what a christmas gift!!!! To go into the New Year with no doubts, no nagging little voice in the back of my mind going well she looks alittle pale today and she's been more tired, do you think? The answer is NOOOO!!!! What a feeling. What a gift. What a Kid!

The first call was to Donovan who had spent the week with my brother and sister in law so as not to miss all the christmas parties at school and to get some extra pampering by his aunt. The poor guy started getting really scared when he didn't get to go home right away after the first scans. He didn't want to eat, or talk to anyone, he just kinda sat there. Donny went and talked to him, I talked to him, his aunt talked to him but he really had a tough time last week, but as soon as he heard Maddy was perfectly fine he snapped out of it, much to everyone's relief. It's really hard to meet the needs of everyone in the family when these uncertainties come up and I am just so lucky to have a sister in law that can take time away from her job and life to focus on Donovan and give him the extra love and attention he needs when I can barely function and get Maddy through what she needs to have done.

I really think that having 2 tests with radiation and holding her during her test that Maddy and I both had a little radiation poisoning over the weekend. We both had bad headaches we just couldn't get over, and she was so not herself, very crabby and just not at all Maddy. I was very emotional just with all the relief and let down after the results were in. I felt like I could have slept for a week. I still do, but that I think now is just from all the activities and family stuff going on for the holidays. It promises to be a very busy week!

Maddy's next scans will be April 7th, and she will do just lab and a chest x-ray. It is hard to not be aggressive with scanning but I would hate to over due it and end up with undue damage from the radiation or leukemia. It's hard to trust, and it's hard to know what to do all the time. I just want to give Maddy the best life she can have and to not damage her in the process.

Well I am going to attempt to update the photos and then try and shovel through some of the mess left from the christmas festivities.

I hope you all had a wonderful Christmas and that you have a very SAFE and RESPONSIBLE New Year!!! Love to you all and GOD BLESS!!!

Sunday, December 11, 2005 10:32 PM CST

Merry Christmas to everyone. The phrase I hear more and more is,"Can you believe Christmas is just around the corner?" This year it really seems to be barrelling towards us at warp speed. We have been very busy, partly because I want to keep my mind off scans coming up, and partly because your life is just not your own around the holidays. I think we are doing the best we have in the last few years as far as controlling our anxiety about scans and dealing with our feelings about all that has happened. Not to say we don't have moments of depression, but it is not all consuming anymore and that is a milestone to be able to say that. Conversations like I had with Maddy on Tuesday do not help though. Let me recap for you.

It is 9am and after returning home from dropping Donovan off at school, I am busy making Maddy hamburger hotdish for breakfast, hey, atleast she will eat it!, and Maddy is sitting at the table fidgeting in her seat. I dish her up and sit down when I hear that slow, low, "Mooom," and I wait as I know there is following that a question of some sort or another that is going to require great mental effort on my part so I brace myself and answer,"Yes, Maddy."
"Well, moooom, what would happen if you had cancer and the doctors forgot to do surgery on you, like surgery you needed?"
"What do you mean Maddy, the doctors wouldn't forget to do surgery, Why?"
Now with a litter louder voice with an urgency to it,"NOOOOOOO, I mean what if you had cancer and the doctor just forgot to do surgery on you, what would really happen?"
Me very puzzled,"Maddy, the doctors wouldn't forget to do surgery if you needed surgery."
Maddy, now yelling at me,"NOOOOOOO, JUST TELL ME WHAT WOULD HAPPEN!!!!" Tears welling up in her eyes.
"Maddy are you afraid that the doctors forgot to do something for you that you needed to beat your cancer?"
A very tearful face nods yes.
"Oh precious, the doctors didn't forget to do anything for you, they did everything that they needed to do to make sure you beat your cancer, you had all the surgery you needed and they got all of the cancer, all of it, your alright, you fought very hard and you beat your cancer."
"I fought really hard to beat my cancer mom and it was hard to do. John fought really hard to beat his cancer too just like I did, but he died anyway. Mom Why did he die? Will I die too?"
The tears started running down my face,they are now again just recanting this to you,"Maddy honey, John fought just as hard as you did but sometimes the body just gets to tired and you die, but it's different for everyone. Your doing really good now so you don't need to worry about that."
"Yeh mom, I fought really hard, and John did too, I just wish he hadn't died."
"We all wish John hadn't died Maddy. No one ever wants a little baby or a young child or any one to get cancer."
"Why did I get cancer mom? Did I eat to much candy?"
I Told you these questions were going to be a mental strain, I just didn't expect it to be such an emotional one.
"Mom, why are you crying?"
"Because baby it makes me sad to remember all that you had to go through. You didn't get cancer from eating sugar, the doctors don't know why you got cancer, but they do know it wasn't anything we did wrong or that you did wrong or anything that you ate or drank. It is important to eat the best foods possible to keep your body strong, but eating candy and sugar once in awhile isn't going to give you cancer."
"Why did God want me to have cancer mom?"
"Maddy God doesn't want anyone to have cancer. It just happens and we have to have surgeries and take medicine and try to be as healthy as we can to fight off what ever we get in life."
Maddy,"I love God, I don't think he wanted me to be sick."
"Baby, nobody wanted you to be sick."
"Why didn't the doctors believe you when you took me in and told them that I was sick?"
"You didn't act sick Maddy. YOu were laughing and playing, eating and never complained of pain."
"But I was sick mom and you knew I was sick."
"Yes I knew but why didn't you tell me that you didn't feel good?"
"I didn't know how mom. The doctors should have believed you."
"I know they should have Maddy, but I finally found one that did and you got all the treatment you needed to get better so you shouldn't worry about that."
"But the cancer can come back mom, that's why I have to go in the donut(MRI machine)Right mom?"
"Yes, Maddy the cancer could come back, or it could not. Anyone could get cancer but you will get scans so if ever anything happens we can catch it but the doctors they got all the cancer Maddy and you are going to grow up, all the doctors say you are doing really well and that they all think that you are going to grow up."
"Can you promise me mom that my cancer will never come back?"
"No baby, I can't. The doctors can't either, nobody can, but they all say you are doing so good and you don't need to worry."
"I don't want to have cancer again mom, it was no fair that I had to have cancer when I was a baby. Did Emily have cancer when she was a baby too?"
"No Maddy she was grown up when she had her cancer.
"But how can a baby have the same cancer as a grown up? Did she have it when she was little like me and they didn't know she was sick either?"
"No Maddy she didn't have cancer when she was little like you, she was big when she got cancer. Some cancers can grow in many different people."
"But she's still just like me?"
"Yes Maddy, she is going to grow up and be fine just like you."

We both just sat there and held each other for awhile and then she went back to her chair and we stared at our plates of cold hotdish. It was 10:30 now and I wasn't hungry anymore.

"You know what mom, I have a boyfriend!" And with that she started to giggle, and just like that she moved on. Me on the other hand I did a pretty good job of bottling it up inside until today when it is time to let it out. The fear, the tears, the anger that my child has to worry about doctors forgeting to give her a surgery she might need to cure her cancer or that she would sit and contemplate her own mortality at the age of 5. So many things in life are not fair and having to have that conversation with her is one of them. Don't get me wrong, I am so glad she talked to me about it, I just wish she didn't have the reason too. Donny immediately assumed I must have had a conversation in front of her to provoke all of this but I hadn't, I don't talk about any of this in front of her. She had the cancer, she lives with the scars and the missing ribs and the fear is all her own, it is a part of her life that she is going to contemplate and have issues with whether we ever talk about it or not. Ignoring it doesn't make it not so. She may be young but to many people under estimate her and how bright she is.
It has been a hard week and yet life didn't stop. We have never been less than 2 weeks from scans and me not on the verge of a total breakdown. Maybe just a mild one. :)

Well it promises to be just as busy a week this week and then it will be scans. I have been thinking alot lately about all the kids we know, the families that have had to bury thier babies, the others that fear the loss of thiers, the kids that are surviving, how different his holiday season will be for so many. Some will be rejoicing, some will be grieving, others will be so gripped in fear they will hardly notice the passing of it. We have all been there, in each one of those phases, this year I will be rejoicing that our family is still whole, that we are doing well and that progress is being made down our path of healing. I will however have a spot of sorrow for all the loss that those we know and love have suffered through, that we have suffered through. How big an impact is made on someones life by even just knowing them such a short time. We did not know John well, nor did we know him long, but what an impact he had on Maddy and us. Our little Christopher whom we never got to meet but whose lose will be felt for a long time. We pray for these families and so many more. I pray hard for peace for thier hurting hearts. I hope everyone can be as bold as Maddy this christmas season and say too,"I love God, and wish everyone a MERRY CHRISTMAS!"
I will let everyone know as soon as we get those good scan results and until then, GOD BLESS YOU and MERRY CHRISTMAS!"

Sunday, November 27, 2005 8:39 PM CST

We had our family Thanksgiving today and as we all sat around the table and started dishing our plates, talking about the horrible weather outside-freezing rain to be followed by 6-10 inches of snow and 30 mile an hour winds-I stopped and looked around at all the faces there. My parents, my grandmother, Donny, my brother and sister in law, and my niece and nephew at the kiddy table with Donovan and Maddy. And Maddy. I had to concentrate very hard to maintain as the words lingered in my head, and Maddy. I still have my beautiful baby this holiday season. There are so many families I know that will have an empty seat at thier tables and a hole as big as the universe in thier hearts this year and I get to say-and Maddy. God, what could a person ever be more thankful for.

I have had a very hard time this week as I had spent the previous week with my ever so dear friend Pam, at the hospital as her mother died. There has been so much death this year that has been so close to us that this year I have really felt what it means to be thankful. It has been an emotional roller coaster to say the least. It is so easy to let things in life get out of perspective. Like Donny not getting the job he went to interview for, it quickly brought us to a state of fear, hopelessness, and anxiety, yet it doesn't matter. We still have each other, our home, our kids, options. We lost sight of that for a brief moment the other day but then we realised that hey, our daughter is still alive and doing very well, Donovan is healthy and growing and we are still a family so the rest really doesn't matter.

I hope that you all too will find what there is in your lives to be thankful for and embrace it and each other. For all of those that we care so much about that are suffering as they face this holiday season without someone they love, please remember how much you have loved and been loved and that the pain may be great but the love of your family and friends is greater and you still have so much left to be thankful for. We love you all, God Bless.

11-28-05

It is aweful outside today, all the schools have been closed, work cancelled, the roads covered in inches of solid ice with snow and wind to come this afternoon. But on the other hand what a gift it is to be given a "free day" so to speak. Your schedule wiped clean for 24 hours due to the weather and to be home with your family is really rather nice. I immediately started to make a to-do list in my head of all the things I should get done today, the laundry, cleaning, ect.., which I may tackle some of it but instead of dedicating this entire day to mindless chores, I think I will use my free day to spend playing games and making crafts with the kids instead. Our lives have become so busy that we don't have alot of down time together anymore. I am grateful for today. I am grateful for the time with Donny and the kids, and I am grateful for this day to sit back and try to process all that has happened these last few months. All the pain and loss, the suffering of people you care so much about, the mixed feelings of fear and relief that it's not you but always with the thought lurking in the darkness of your mind that it could be you. I have kept us in over drive this fall to help keep my mind from going into the fear and panic mode of Maddy's scans on the 21 of December. I really have not given them much thought yet. I know as soon as I flip the calender page and have to see the appts written in the box that it will become more of a battle to stay focused and positive. I have post traumatic stress from Maddy's cancer and just the act of scheduling her appts makes my head spin and my body grow weak. I am learning to try to redirect my mind and avoid certain things that trigger my panic and so far I am doing much better than I have since this all started. It is such a slow process though that at times it is hard to stay focused. You really do have to learn to live just one day at a time.

I can't stop thinking of Christopher and his family left to face the holidays without him. Thoughts of them drift in and out of mind all day everyday and I can feel the emptiness in the air. My mind will drift to Johns family and how hard this is all for them too. Then to my Pam and all the many losses suffered there. There are so many more that it really starts to bring you down when you stop movng for a moment and start thinking about all of the families, all of the sorrow and pain. I pray for all of them to have some peace, some moments of love and laughter, some quiet time to reflect and let go. I pray that they all know how much they are loved and cared about and that their journey through grief is not a long one. I do not understand why we all have to suffer so much in life, I don't think any one does. I am learning though that despite the pain and sorrow of life that there is also always something good and blessed in life that we should appreciate and be thankful for. It is easy to lose that in grief.

The past few months have really been very hard for us, aside from the loss and all the baggage of life we have been very worried about how we will continue on. Like I said before, Donny didn't get the job he wanted and we are really worried he won't find a job that will cover Maddy's almost $1000.00 a month insurance premium or provide her coverage under thier own policy. Medicaid is deciding this week whether we are still of great enough need to continue helping us with our medical bills. If we lose that before Donny finds a good job we really could lose what little we have left. Of course this all has to happen around the holidays. It is hard to know what to do now or where to go, niether one of us is feeling very confident or bold right now and so making decisions hasn't proven to be very productive. I just have to keep believing that everything will work out in the end. That has become my new mantra.

On a lighter note, Maddy asked me yesterday what I wanted for christmas so I said I wanted good kids, without even a hesitation she replies,"Well Santa isn't making any of them this year so pick something else!" Gotta love her!!

Please keep in your hearts and prayers this holiday season all the families who are mourning the loss of someone dear to them and then count your blessings, twice.

Love to you all.

Wednesday, November 9, 2005 9:45 PM CST

Happy November to you all! Thank goodness Halloween is over and we are moving onward to the next holiday! I love Halloween but it felt good to take down the decorations. I decided this year in order to ease the stress in December that I would start to decorate for Christmas now, so I am happy to say the tree is up and naked! It is going to more than likely take until December for me to get the rest of the decorations dug out and up but atleast the tree is ready for the day I have some motivation. Having now said that I am not going to specify what year then I will get the tree done and decorations up!
I guess I better back up a bit and tell about Halloween first before I move right along to the holiday after next!
The kids had a blast on Halloween, big and small,as we went to a party at the college for the kids Sunday night and then over to our church for pumpkin carving and games-not a huge crowd at the church but much fun all the same.Next year we will have to invite more people to go. Pastor Jeff had been watching Martha Stewart that week and decided to carve his pumpkin using power tools. You want to talk about envy, I'm sitting there with a scrawny, paper thin, dull pumpkin cutter and here he brings out the electric drill with the solid steel blade and various drilling attatchments, the ten commandments may say though shalt not covet thy nieghbor, but man I wanted them tools!:) I eventually got all of the gunk scrapped out of Maddy's pumpkin and cut it to her specifications so she could then carry it around and show everyone the pumpkin SHE carved. Yeh right. Donovan on the other hand wouldn't let me near his prized possesion and did all the work himself. He must have spent atleast a solid hour just sitting there scraping and carving. I think we should do pumpkins more often! Now as to the costumes, Maddy was a mermaid and at the last minute Donovan decided he was going to be a cowboy. Needless to say that after the pumpkin carving Sunday night, we needed new costumes for Monday so I convinced them that they needed to be horses since I had bought them those costumes after they begged and begged for them, well ok, I threatened to cancel all of Halloween if they didn't put the stupid things on and wear them and be happy about it!! Bet you didn't realize I had such powers as to cancel the whole holiday now did you?!?!?! Well neither did my kids until then and so we ended up being a princess RIDING a white unicorn and a cowboy ON his horse. Us moms take our victories whnever we can get them, regardless of how small and absolutely irrelevant to life they may be! So on Monday se went to Fargo to have a quick supper with great grandma-should have known that wouldn't be quick-and then we were heading up to the nursing home to trick or treat great grandpa. Well we arrived exactly 10 minutes after the whole shebang ended and great grandpa was already getting ready for bed so we didn't even get to see him! Talk about dissappointing. Well some of the nurses felt pity on our two very dissapointed treaters atop thier mighty steeds, and filled thier buckets to the brim with enough candy to keep them looped up for the rest of the year. Actually I put it all away today and it will go to the Hospice office I work at to hype them all up instead! So from there we went to trick or treat our dear friend Becky and then off to Emily's and a long over due visit with them. Emily is doing just great and is as beautiful as ever. Her family is all well and it was just so nice to see them again. We stayed so long there that when we finally left it was late so we headed home. Maddy was asleep within six blocks of Emily's folks house and Donovan made it to the edge of Fargo. All in All it was real good.

I now want to share with you the exact words of my very wise and seemingly gifted child that she shared with me the other day while driving into town to run errands. Mind you we were listening to the radio, not talking about anything, hadn't been talking about anything, and especially had not been talking about cancer or any subject relating to cancer at all that day or before.

"Mom, can I tell you something?"

"Sure Maddy, what is it."

"You know mom, I had cancer." It just kills me when she says that to me, like does she think I forgot?!? Come on I'm not that blonde!

"When they told me I had cancer I was very sad, and I just, you know,was really sad and stuff. But I couldn't fight my cancer when I was all sad because you have to be happy to fight cancer and win so I took all the lovingness in my body and fought my cancer with my lovingness and was happy again so I beat my cancer."

"That's it, you can turn the radio back up now ok mom?"

So there I sat, once again floored by her, with a tear or two in my eye, I might add, thinking of those words that my daughter just shared with me, words that are so very true indeed. You can't fight a battle for your life when you are filled with sadness and despair. You need to find the lovingness inside of yourself and let that shine through and be happy. Learning to be happy again this last year has been very hard for us to do, well me especially. It's so easy to let the worry, the fear and of course the sadness take over and control your every thought, your every move and action. Maddy makes it sound so easy to find that lovingness, that happiness, and yet that has been one of the greatest battles I have faced. For me I think I just finally got to the point were my body just couldn't physically handle the constant stress and I was finally able to let some of it go and experience some calm once again in my life, dare I even say some happiness. I feel a bit at peace right now and am taking advantage of it. I started the kids in ice skating lessons yesterday and both of them are naturals, like fish to water. They both did so awesome that we may be looking at hockey for Donovan already! But the joy I felt watching them glide around the rink yesterday is a feeling that would have been lost on me a year ago. It feels good to have some lovingness back in me, and I hope you all can find some inside of yourselves too!:)

God bless you all, Good Night.

Monday, October 24, 2005 11:33 PM CDT

Just a short update tonight. Maddy has a bad ear infection and everyone feels like crap with all the combining going on around here right now. To say the least allergies and asthma suck. We all have been tired, plugged up, and crabby. Big emphasis on the CRABBY! I should have known Maddy had something going on when she went from being the perfect little angel on Sunday to this oppositional, in your face, pain in the woohoo all week. But being Maddy she of course has no symptoms of an ear infection. No pain, no drainage, no fever, no sore throat-nothing. All week nothing until I am at work on Friday and Donny calls to tell me he is taking her to the clinic because he checked her ears and the one was blood red. Go figure. Nothing like being 50 miles away when your baby needs to go to the clinic. But can you believe this, Donny managed to take her in, get her checked, get her meds and get her home all without me being there to orchestrate the whole thing?!?!?!? All you control freak moms out there are laughing because you know what I mean. The rest of you can just skip down to the bottom of the page! :) There gets to be a point in time when a person must come to grips with the fact that other people can do things on thier own, even if this person is your husband and the thing involves your children! I almost left work to race home and get Maddy to the clinic myself but after a long debate with myself in my car inbetween my patients, I came to the conclusion that I have to give up some of this control and let Donny do more with the kids. All this emotional healing and self discovery can really be a pain in the woohoo too!!!!! It's a good thing for mom but dad kinda liked mom doing everything all the time and I think he was a tad bit disappointed that I didn't race home from work on Friday! Oh well, you can't have it all ways all the time.

The kids are getting so anxious for halloween and Maddy has changed her mind once again and now wants to be a mermaid. Lord only knows what she will end up as. I have started our Daisy Girl Scout troop now and we are going to go to the Pumpkin Patch for an afternoon of fun and education with her troop on Thursday. I am the Daisy leader and am excited about all the fun things we can do in Girl Scouts. I remember being a Brownie when I was young and remeber how excited I got when I earned a new badge. The Daisy's earn Petals this first year and move up to Brownies in the first grade. Donny is the leader of Donovans Tiger Cub Scouts pack and Donovan is really enjoying having his dad involved with him. Needless to say we have been busy this month. Maddy has ballet on Mondays and Donny does Scouts and then I do Daisy's on Wednesday, but only every 3 weeks with a fun day in between. All of the girls are from Maddy's kindergarten class so it is really fun.
The weather is still nice but everyone is stiffening up with the cooler temps. Donny is trying to get a new dog house built that will have heat in it for the dogs as our german shephard will not make it through another really cold winter without a heated house to be in. Our great pyranees is having back problems and isn't hardly getting up at all since the weather changed. I will be taking her to the vet next week to see what can be done. She was the kids christmas present the year before Maddy got sick and we will all be devestated if we lose another dog this year. We have not had very much luck as of late with our pets.

Well this wasn't so short or quick so I'd better get to bed before I can't make it anymore.

God Bless and Good NIght!

PS Please don't forget to keep Christophers family in your hearts and in your prayers as they struggle on with life without him.

Saturday, October 15, 2005 9:17 PM CDT

What a whirlwind the last few weeks have been. As I may have mentioned before, our beloved little Christopher passed away in his mothers arms on the day of Maddy's scans. It wasn't an unexpected passing, but it has broke our hearts all the same. I mourn the loss of this little boy, a child whom I have only ever experienced thrpugh caringbridge and from listening to him giggle and talk on the phone. I never had the blessing to hold him in my arms, to touch his tiny hands, to be lost in his eyes, but yet my heart feels the loss of him as a whole just the same. I feel the pain of Pam and Jeff so deep in my soul that my body aches. I have grieved the loss of a child before, a child we had had for 3 years that we had given up so very much in our lives for, the circumstances here are very different I know, but the pain is quite the same.
I talked with Christopers mom, Pam, the day he passed away, when we had returned from scans, and she sounded so at peace, I was suprised that she was not the sobbing, mournful women I had pictured answering the phone. I should have known better than to have thought that. Pam has always been so strong and resilliant through this long and devastating journey. She said his passing was a beautiful experience, very peaceful, and that he was surrounded by all his family and friends right up to the end. I was once again amazed by her spirit, her calm, her sense of humor and her compassion for everyone around her. In the midst of all that was going on that day she had called my house to see how we were doing and how Maddy's scans had went, how amazing. She said she was so worried about us, at a time like that she was worried about us and Maddy.
The thought of someone being able to see outside thier grief, be aware of what is going on in someone elses life at a time when I would be amazed if they were aware of anything other than the passing of thier child, to reach out to me at such a time just really made me step back and say,"WOW". It started me on a journey that I have been skating the outskirts of for a long time now. I have been very aware of my feelings of paralizing fear and anxiety, and I have been trying to take steps to deal with this before it becomes all that I know anymore, but it has been an unsuccessful journey thus far. There is no right or wrong way to deal with the grief and loss of your life once cancer has entered it. There is no set time to be afraid and lost, petrified and non functioning. The journey is very long, very slow, very painful and very individual. Many people have expressed to me at many different times in the last 2 years at what rate they believe I should be healing at and everyone has a right to thier opinion, but quite frankly that is all it is. No one can decide for you when it is the right time to move onto the next phase of healing or not. I have been wanting to for quite some time but I can not ever begin to describe to you how difficult it is to fight down the scary thoughts and the fears that creep into my mind at the most in-opportune times. I am not a dumb woman by any means and am fully aware of all the things people so blatently love to point out to me. I am quite aware that my daughter is alive. I am quite aware that she is doing well. I am quite aware that her prognosis is very good. I also am quite aware that I do not live life as though I am alive inside and out. I am so afraid of losing my precious baby that I may be going through the motions of life, but I am not a full participant in it anymore. I know this. And when Christophers mom called me to see how I was doing on Maddy's scan day while she was losing her precious baby, well it grounded me to the core. I was so in awe of her, so inspired by her, and will be forever grateful to her for all she has given to me.
I contemplated all of these feelings and thoughts I was having all weekend and on Monday I felt restless. Christophers funeral was the next morning, and even though I had told Pam how much I wanted to be there for them it just wasn't looking possible. Pam of course understood and never expected me to drive 12 hours there for the funeral. Well Donny came home around 3pm and brought me in the mail. There in my hands was a Thinking of You card from Pam. Once again she was able to render me speachless with her selflessness. I showed the card to Donny and he asked me why I was still sitting there. I called my dear friend Pam who lives here in ND and asked her to go with me and 2 hours later we where on our way. My motives didn't seem to clear to me or anyone as to why I felt so compelled to go, but once the funeral service was over and I introduced myself to Pam and she embraced me with all of her heart, I knew why I was satnding there. I needed to see what my life could really be like but isn't, I needed to start down the path of healing once again, I needed to heal my heart with someone who truly understands what the words ewings sarcoma means, but most importantly I needed to be there for a family that has meant so much to me and given me such inspiration. I needed to see outside of my fears and be there for them.
The service was beautiful and I could feel Christoper surrounding us where ever we went. He was so loved and treasured by so many people. His life may have been short but his impact on all our lives will last a lifetime. I enjoyed every moment I was able to spend with Pam and Jeff and thier daughters. I can't wait to be able to meet them again and the next time I will have Maddy and Donovan with so they can meet them too.
I believe Maddy and Christopher share a kindred spirit as they both have such captivating personalities you have to experience because they cannot be explained.

Pam and Jeff, From the bottom of my heart I thank you for your warmth, your friendship, your generosity, your love. I hope you where able to take a trip this weekend, it has been so beautiful here I hope you are getting the same glorious weather there. I have been thinking of you all throughout my everyday since I have been back. I pray that your path of healing is a steady one and that you don't get lost along the way as I have. I will always be here for you in what ever way you need. We love you all so very much.

Please stop by and leave a message for Pam and Jeff and the girls. They truly are wonderful people and deserve all the love and support we have to offer.
Thank you to everyone who continues to follow Maddy's progress and pray for her continued good health. Thank you so much to everyone who continues to send the kids cards. They love to get mail and it just brightens thier whole day.

God Bless you all.

Wednesday, September 28, 2005 2:36 PM CDT

We did it!!!! We have clear scans!!!!!! I can't even begin to tell how relieved I am. I literally watched every minute tick away on the clock last night. My neck and back were so tight I couldn't hardly move. Needless to say I ended up with a migraine. I should have just gotten up but I thought if I laid on the heating pad I would eventually relax and fall asleep. Wishful thinking there. Her Onc. said he can't guarantee she will never relapse with ewings but he doesn't see it in her future. He said she just looks wonderful and I should not worry so much. Wishful thinking there, again! :)

Her onc. said that ewings isn't an eviromentally affected cancer, that there aren't any "hot spots" or cancer pockets of ewings cases. That did make me feel better as far as looking at areas to move to. There seems to be a large number of kids with ewings in Wisconsin but Maddy's onc said that would more than likely have to do with population and the fact that families connect within groups around them and if the group I connected with was in Wisconsin then that would explain why I was more aware of the cases there and not anywhere else. Sometimes logic eludes me when I am in a mood of anxiety. I finally feel as if I can breathe again, atleast until the week before christmas when we scan again. Probably the 22nd of December, they will send me her times. She will also have an echo done to make sure her heart isn't showing any signs of damage from the adriamiacin. Her kidney damage seems to have dramatically improved and counts are almost back to normal. She still has some leakage of her kidneys but even that has slowed way down. She of course was just perfect through everything, even getting poked 3 times, without a single tear or even an ouch. She was just so happy to see her beloved nurse Sheila. Maddy says that having cancer was worth it to know Sheila. Sheila is so wonderful with the kids and I don't know how she always manages a smile for everyone, even when you know her heart is breaking for John, she still manages to stay upbeat and put everyone at ease. I don't know how I would make it through Maddy's scans without her hugs, love and support. If you read this dear Sheila, Thank you so much for being so wonderful.

So now to concentrate on important things, ballet lessons, girl scouts, swimming lessons, Halloween, ect. Maddy and Donovan have already started on thier Christmas lists and thought that we should decorate for Halloween and Christmas at the same time. As much as I love both holidays , that seemed like a stretch, even for me. Just need to take one holiday and/or major event at a time. Although I do think I will let the kids decorate for Halloween this weekend. We already have taken out all the Halloween costumes and Maddy was trying them all on the other day while listening to "I'm Dreaming of A White Christmas". What a kid.

Well I need to go and rest now, I am so tired and worn down I feel like I could sleep the rest of the week. Unfortunately I have a packed schedule so I will have to wait until Saturday to relax at all. Thank You all so much for your prayers and continued love and support. God Bless you all.

Sunday, September 25, 2005 12:31 AM CDT

Hello to all. It has been a very hard week here. You all know how worried I am about scans coming up and the stress of that alone has made me physically ill. This week a little boy named John passed away from rhabdomyosarcoma(?) He had just relapsed and within a few weeks was gaone. He had been going through treatment when Maddy was and although we did not know the family well, we knew them. Maddy was home when I recieved the sad news and I was not able to not cry in front of her. Smart as she is she insisted we have this conversation,

"Mom, are you crying because John is sick?"

"No baby, mommy is crying because John has died."

long pause

"John had cancer you know mom."

"Yes I know Maddy."

"Did John die because of his cancer mom?"

"Yes baby, he did. He fought very hard to beat his cancer just like you did, but his body just couldn't keep fighting."

"I fought very, very hard against my cancer didn't I momma?"

"Yes you did baby, and you beat it, the cancer is gone."

"Fighting cancer was very hard you know. It made me feel really sick. I didn't like it"

"I know."

"Will my cancer come back too?"
Long pause while I fight back the flood of tears and emotion released with that loaded question.

"Remember what the doctors said when you finished treatment? They said you where going to grow up so you just need to worry about eating good food, getting lots of rest and growing up strong and healthy."

"Good, because I don't want to die." and with that she was gone and I sat there on her couch in the playroom, a puddle of tears and emotion. How unfair for a 5 year old child to have to even consider her own mortality. We have talked about death before but this time I saw for the first time in her eyes that darkness of the actual understanding of what death truly meant and the connection was made between cancer and death. It scared her. She was very quiet for the rest of the day. She also asked me to check her temp about every ten minutes. I think she is worried about her scans for the first time. Part of the blame for that is mine. Maddy is very sensitive to me and is to smart to hide anything from. She knows I am worried, and the other part is Johns death and the connection she made.

So in order to spare us an extra week of mental and emotional torture I had her scans moved up to this Wednesday, Sept 28. I also had Donny take the kids to thier grandparents for the weekend so I could try and get a grip on myself so I don't scare her anymore than I already probably have. This is really going to be my greatest challenge in life. I have always worn my emotions on my sleeve, and now I am going to have to hide what I feel and learn to have a poker face of my own. That is going to be so very hard for me to manage. I will never lie to Maddy or hide anything from her about her condition, but as far as my personal struggle with all of this I am going to have to hide that from her as much as I can. What is really going to be hard is when I run into someone and they ask me how I'm doing. I have always been completely honest. To say "just fine" when that is not really how I feel always felt dishonest and I don't ever want to lie to anyone so I would tell them the honest trueth, Learning to say "Just Fine" is really going to be hard. So if you happen to run into me in the store or wherever and I have the kids with me, please don't ask me how I am. That sounds so lame I know but I am really struggling with how to cope right now and I don't really know what to do. The stress in our life has not eased by more than a fraction since Maddy ended treatment and without ever getting a real break from the constant trials and tribulations we just are not making much progress with our personal healing. I keep trying to force my mind into a different place and for awhile can maintain until there is another trajedy and then I slip back into feeling scared and having no sense of security in our life. It is a constant battle with both victory's and defeats. I try to take just one day at a time but that is hard to do sometimes when you have major decisions to make about your future so looking beyond today and even tomorrow is often necessary.
I talked to Christophers mom the other night and she is just amazing. For someone who is facing the end of life with her precious baby bay, she has more strength and optimism than I do. What an eye opener. I had asked her if there was a sense of relief when they found out that there was nothing more to do, was there relief in the finally knowing what was going to happen. Some of you may think that is a horrid thing to ask, but something I felt compelled to just the same. Her answer, in some ways yes. There is so much more a person seems to be able to deal with when the outcome is known. I believe that Jesus was so calm and sure of his beliefs and what he was doing his last while on earth because he had the comfort of the knowledge of what was to come. He had the peace of mind of knowing what the end result was going to be and with that knowledge he was able to withstand the pain and the torture of his last few days. But I also cannot say that I would rather know the future either. If I could find out that she stays in remission forever, grows up healthy and happy and strong, has a great life then I would shake that crystal ball in a millisecond, but if I were to see that she would have to face this monster again, suffer more, be unhealthy, unhappy and/or have a short life, I think the knowledge of that would kill me. So I guess it is better to work on having blind faith, hope in the future and trying to deal with my emotions and the rollar coaster ride that is my life. Thank you for our talk Pam, I know you alwasy say you feel so much better after we have talked but I must say I believe I came away from this last conversation with so much more. We love you all so much.

I ask all of you to please say a prayer for Johns family. He was not expected to go so quick and his family could really use all the support you can give. Please continue to pray for our precious little Christopher. He has his moms strength and determination and is fighting for every day he can get here on earth, and then please say a prayer for Maddy that her scans are clear and that we can all heal and move forward with life, even if it is only 3 months at a time.

I had written a response to Pam's journal entry about the people who turn thier backs on you when you face a tragedy like your child having cancer. It was a very raw and honest journal, one that expressed in great detail how I felt about all the people who disappered from our lives when we needed them the most. I was just about to hit enter when I paused and contemplated the words I had just written on my computer screen. Other than getting the opportunity to vent and get out some of my feelings on that subject, what good would those words do? Would they change what had been done? Would it even get through to those that it was meant for or just offend those that it was not? And then I started to think about the people in particular that those words were meant for, I realized that I don't miss any of them in my life, I don't want them to reach out to me and my family, I have suffered no long term loss from thier abscence as thier places have all been filled by new friends that were there for me when I needed them. So I hit delete and watched line by line, the words being erased from the screen, from my journal and from my life. It is an aweful thing to do to someone in need-turn away from them when they are suffering, but if you are here, reading my words, sharing my life and caring about my Maddy than those words just do not apply to you so instead I say thank you so very much, from the bottom of my heart, for not turning away from us and to continue to love and support us. God Bless you all.

PS Keep checking the photo album as , thanks to Becky and her guilt trip :), I will be trying to put new photos in the photo album everytime I update!

Monday, September 19, 2005 8:56 AM CDT

17 days to go until her 18 month scans. October 5th. My birthday. This will be the 3rd year in a row she will have scans on my birthday and will continue to do so for atleast the next 4 years. Being married to a man who doesn't see the significance in celebrating birthdays, therefore doesn't bother to remember any, I have gotten quite used to doing nothing for them, but having Maddy scan on that day really makes me hate them all the more. Not only do I get to get older, my hair turn whiter and my waistline wider, I have to have the anxiety of waiting for those results. Yes, I have been reminded of what a wonderful gift those words, clear scans, are and that I agree, there is no greater gift. It isn't even about my birthday. I could care less about it (Once you turn 29 you don't really acknowledge the years anymore anyway! :) It's the scan part. It's the anxiety I feel, the pain in my heart I feel everytime I watch her go in the "donut" and pose for x-rays, the pokes. My mind inevitably goes to the thoughts of this so sucks for her, she is just a little girl and shouldn't have to go through this. My stomach turns tighter with every tick of the clock and by the time the dr finally comes back with the scan results I could puke. He walks in the room and my head starts spinning and my heart starts racing. I search every millimeter of his face for an indication of the words printed on the paper he holds, our life hangs-suspended in time-our fate written in bold black ink on that damn sheet of paper and the dr has ,as always, his best poker face on. I can't tell if his step is slower, did he pause when he walked in? Did he look away from me too quickly? Is he avoiding eye contact? What does it say!?!?!?!?!?!?! He will pick up Maddy and start her exam, asking her silly questions and making her giggle, I can hear my heart pounding in my ears, it's so loud it's almost deafening. My eyes still searching his every move, his every gesture, he is giving me no clues, Oh dear God what does it say!!!, I want to puke. I'm sitting on the edge of my chair, barely even sitting now, reaching out to him, desperate for the answers, pleading to him with my eyes to please tell me if she is still cancer free, is she still in remission, is this nightmare of cancer still just a fading memory for her. Just when I am sure he is thinking I am going to spring out of the chair at him,he will turn and say,"Looks good see you in three months." And then it's over. Maddy jumps down and takes off in search of her beloved nurse Sheila, Donny trailing after her, and I am left alone.My body turns to jello and it is all I can do to catch myself with the chair before I fall forward as all the emotion, the anxiety, the fear drains out of me. I'll start to cry and thanking God for 3 more months. I sit there in that little room with all the thoughts running through my head, more like racing at warp speed, I sit in shock and try to absorb the news that we have still beat it, this bastard of a disease that steals so many beautiful young children like our beloved Christopher, we're still ok.

That is the scene as it has been played out for the last 15 months. My mind has played out every variation to that scenerio, more than once, and I don't want any part of it to change. I don't ever want the results to be anything but all clear. The reality for me is I very seldom get what I want in life and the scans coming up are scaring me more than the rest. When Maddy was going through treatment I discovered a pattern to the kids with ewings I came across and when they relapsed and 18 months out of treatment seemed to be the deadly number. I had asked one of Maddy's onc's about it and was told that 18 to 24 months were the most crucial months to get through-in his opinion- so I have been fixated on this date for almost 2 years. It doesn't help that last Wednesday I got a call from the school asking if Maddy usually got headaches or could Maddy be faking being sick just so she could go home? KIDS WITH CANCER DON'T FAKE BEING SICK!!!!!! I rushed over from work to pick her up and she was burning up, her body was lifeless and she was dehydrating. I rushed her to the clinic where her temp was 103 and I couldn't keep her awake. Her head hurt her so bad she gagged and coughed and then just curled up in the fetal position. All the memories of watching her do that during a post chemo fever came rushing back to me and I started to really panic. My first thought was,"Oh my God she has relapsed!" I couldn't stop shaking and I just felt paralyzed with fear and the what if's, did she have west nile which is characterized with sudden high fever, intense head and/or body pain and extreme fatigue, maybe she has a brain tumor, could it be ewings again, maybe....., maybe...., maybe......., and your mind just doesn't grasp that it could be just a virus which is knocking her down for awhile but doesn't mean she's out. When your child has had cancer you don't see the obvious because in order to get your child diagnosed and treated you had to fight the dr's on the obvious to get them to look beyond because it just didn't feel like what they were saying it was, and had I not done that Maddy would be dead. It did turn out to be just a bug that only lasted a few days and she was back to her beautiful and ever questioning self. Maybe if it wasn't so close to scans it wouldn't have been so traumatic but it is and it was.

Donovan of course didn't want Maddy to have all the fun so he turned up an ear infection Saturday morning. I am afraid that Maddy is going to be one of those kids that picks up every little bug that comes her way and since her scans always fall among peak cold and flu periods, this will be my life every 3 months.

17 days to go and I am already drained.

It also doesn't help that Donny and I need to make some major life choices the next few weeks as he gets ready to go out west to pitch a job proposal to the medical supply firm he worked with this summer. We are so stressed out about what to do it's not even funny. Niether one of us knows what we want to do really and that doesn't help a bit. There are many different options available to us and that is most likely the biggest problem as we tend to be very indecisive. Do we stay and develop the company here, or do we move to a growing area in either Wisconsin, Tennessee, or Oregon? I've never been to Oregon or Tennessee and I don't think I can blindly pick up and move to another state without getting to really know it first. Do we want to move the kids away from thier Great Grandparents, Grandparents, Aunts, Uncles and Cousins that they all love and who love them. Do we leave our community that we have just started to blend into after 7 years, but can we continue too live surrounded by fields that are being sprayed all spring, summer and fall with fungicides, pesticides,and insecticides. I have read a few studies now that are showing a link between these chemicals and the ewings cancer. It is a weak link right now but one that is being further investigated. Moving to a big city adds the pollution factor from big industry and you then have more people and crime to deal with. We just don't know what to do. The area we live in now is considered the "Cancer Belt" because of the extrememly high rates of cancer compared to the small number of people. The causes are contributed to the farming and the interstate that increases the air pollution. We feel we should move atleast out of "The Belt" but then where do we go?? How far do we go? Donny and I have been agonizing over this and we are no further now to making a decision than we were a few months ago. I know moving doesn't mean Maddy won't relapse and I don't know that staying will cause her to either. I just don't know what to do and the clock is ticking for us to decide. If any of you out there in caringbridge land have any advice or ideas for me then please let me know, I would appreciate a fresh perspective on this all.

Well this has really gotten quite long and I have cried enough now to completely plug my sinuses up so I will go. PLEAAAAASE stop by Christophers site and leave a few words of support for him and his family and say a prayer. Also please continue to pray for my precious Maddy and that her dreaded 18 month scans will be as clear as a bell. My love to you all.

Sunday, September 4, 2005 11:48 AM CDT

Today is Donovans absolute favorite day of the year!! No, it's not his birthday, the last day of school, the first day of camp, or even christmas, it's ROLLAG!! For those of you non-North Dakotans, Rollag is an annual celebration of the good old days of farming, not farming with satelite tracking systems and air conditioned cabs on the tractors, it is the old way of life, our heritage. Farmers, collectors and people of all ages gather to watch as these antique tractors are brought out, revved up and put on display for all of those, including my son, who like the roar of an old tractor engine, the smell of exhaust and the dirt in the air from the threshing displays and tractor pulls that go on throughout the day. The old timers are pretty good about letting those young whipper snappers-mainly Donovan- crawl all over thier retired beasts of burden, turn them on, check them out and then stand back and listen to them go,"Wow!" Now you have to understand that Donovan was first introduced to Rollag at the ripe old age of 2, not because he necessarily wanted to go but because mom wanted him and his dad out of the house for a day and forced them upon my poor, unsuspecting dad and his brother-my uncle Fred. It was love at first sight for him. From the big train that came and picked them up, to the sound of the first tractor starting up in the cool morning air, to the mud sucking his feet to the ground, he was in heaven! He was hooked right then and there and so now every September it is the family tradition for my dad, uncle Fred, Donny and Donovan to go to Rollag-like it or not for the grown-ups! I love it as I am allergic to most everything at Rollag so I don't have to go!:) Donovan literally counts down the days of the year until he can go again, starting from when he gets home that night from the grand event! I think it's great for all of them. Donovan adores his uncle Fred and it is one of the few times a year he gets to see him and anytime he can be with his grandpa is a bonus, and it gives Donny a chance to get a break from life and have some good family ribbing for a day. I must tell you that the combination of those three men together can be quit hazardous to a persons senses and Donovan I am sure is de-briefed all the way home on what not to repeat! All in good fun though.

Maddy on the other hand is not as happy because for starters it is a guys only event and she doesn't like to be excluded from anything, secondly; I won't take her any where because I can't afford the extra for gas right now; and thirdly I am on the computer sharing our lives with all of you and not entertaining her. The travesty of it all!

I did take her to town to get groceries yesterday and buy her tap shoes for her new ballet/tap class she will start next Monday. I cannot afford the $30.00 a week it would cost to drive her back and forth to Grand Forks to remain with the dance company she was with last year, but have decided to let her try the local dance company that is a bit more modern than I like but atleast Maddy will still be dancing and she will be with some of the girls from her kindergarten class. She is so excited for tap class that she hasn't taken her tap shoes off yet. She has managed to scrap away all the skin off her ankles, but that hasn't stopped her from wearing them yet! Between dance and swimming for her and Donovan and then boy scouts and maybe Tye Kwan Do? I'm sure that's not the right way to spell that, for Donovan, it promises to be a very busy fall. With the cost of gas and everything else going up we are having to make more sacrifices. Donny will be staying in Fargo all week with my grandma while attending school, so we will only get to see him on the weekends. You know I don't recall getting married to be a single parent here?!? :) You just gotta do what you gotta do sometimes. It would cost us about $220.00 a week in gas just for him to drive back and forth from home. We just can't afford it. We don't have cable or even a satelite dish subscription to cancel, we don't get the newspaper, any magazines or periodicals to cancel and I only go to town to shop every 2-3 weeks and I have been really good sticking to a very meager budget so other than cancel my internet-which I think Donny would go into shock and withdrawls if I did- I don't have any other corners to cut. I suppose we could stop bathing everyday, wear our clothes 2 days instead of just 1 and only eat 2 meals aday-sorry, I just can't stop laughing at the thought of that ever happening!!:) Any one who knows me knows I have cleanliness issues and I would have to dead before I would ever deny anyone food. I'm to german for that!! (German women are known for having a deep, ingrained need to feed anybody and everybody until they are about to explode and then make them eat dessert! Atleast the german women I know around here are like that. My grandma would be thier leader!)

Enough about being so broke. Last weekend Becky-a dear friend we made while up at the hospital- wanted me and the kids to come to Fargo for a fun day with her and it was just wonderful! We had a picnic in the park, went to the $1.50 matinee of the kids movie "Madagascar",which, by the way, my kids are still laughing about at supper everynight!, and then Becky wanted to give Maddy a special gift and with my permission she took Maddy to get her ears peirced! Maddy has been begging me relentlessly to get them pierced since comnig home from camp and is more than capable of taking care of them so I figured if she really wanted them then why not. Grandma, on the other hand, thought I should have made her wait until she was 12 like I had to, but that is one of the many joys of being a parent. You don't have to torture your kids the way your parents tortured you!!! I know I will pay for that comment later! Maddy walked walked around for 3 days straight afterwards, holding out her ears and saying,"I can't believe I have pierced ears!!!" She is so proud of her earings. Thank you so much Becky, Maddy will never forget this!! Becky also got Donovan a really cool yo-yo that he has been doing "tricks" on all week. He can't wait to see you again Becky so he can show you all he can do! Maddy gets to change her earings at Halloween and just can't wait to go and buy her first set of earings!

With all the despair in the world today I want to take a minute and share with you the words to one of my favorite songs.

I see trees of green
Red Roses too
I see them bloom
From in you

And I think to myself
What a Wonderful World

I see skies of blue
And Clouds of white
The bright Blessed Day
and the dark Sacred Night

And I think to Myself
What A Wonderful World

The colors of the Rainbow
So pretty in the sky
Also on the faces
Of the People going by

I see Friends shaking Hands
Saying,"How do you Do?"
They're really saying
"I Love You"

I hear babies cry
I watch them grow
They'll learn much more
Than I'll ever know

And I think to Myself
What A Wonderful World

I think to myself
What A Wonderful World

OHHHH YEAHHHH

There is something about that gravelly voice of Louis Armstrong that just makes that song really talk to me.

Please continue to pray for Christopher and his family as he continues to decline and his family struggles to cope. We love you very much Christopher,Pam,Jeff and family.

Well my dear Italian Sister is one the phone so I must go and chat for an hour or 2!

Please leave a message in the guestbook if you stop by. I'm starting to feel like I'm writing to myself! God Bless and love to you all!

Wednesday, August 24, 2005 9:51 PM CDT

What a monumentous day, a day that 2 years ago we were told would probably never come for us, a milestone - Maddy's first day of KINDERGARTEN!!!!!!!!!!!!!!
We where up this morning at 6am to make sure that we all where showered, dressed, fed, brushed and out the door in time to get to school and get in all the photo opps for mom before the first bell. And can you believe that we actually made it with about a whole 5 minutes to spare!!! Not bad for the combined efforts of two parents versus 2 small children getting ready for thier big day-right?!? Tomorrow should be easier as only Donovan and Donny need to get up and get ready for school, I figure by christmas we should have this streamlined to only needing 1 hour of prep time instead of 2!:) Last year I rolled the kids out of bed 20 minutes before school started, poured them into their clothes as I shoved a toothbrush in thier mouth and let them eat breakfast at school. Quality parenting there, right?!?! I guess I could do that this year again too but I am trying to stay in the habit of our morning routine we developed over the summer. You know like actually eating food that has nutrition in it instead of pure sugar and food coloring, proper dental and personal hygeine versus a spit wash and mouth rinse as your running out the door, and the joy of each others company around the table in the wee hours of the morning. Are you all laughing yet?!?!:) The nutrition part and washing part is right but considering the only one in this house that is a morning person is Maddy, you can imagine how blissful the mornings are around here. Have you ever watched a movie where the parent is literally dragging the child out of bed by the feet and the child is desperately clinging to and dragging with all of the bed sheets and blankets behind as the unhappy duo ascend to the kitchen in a desperate attempt to get ready and out of the house sometime before lets say, supper!! That child would be Donovan and that would be the scene that plays out in my house most school mornings after the few nerves I have left have been frazzled to no end by my very un-morning child unwilling to budge from under his covers. Maddy on the other hand is this little beam of sunshine that literally pops out of bed and says," Good morning momma,I love you!" and then scampers off to dress, eat and brush with no fuss at all. Seriously, I gave birth to both of them. I have pictures to prove it!!!!! There are somedays that she can be a bit to cheery in the am, especially if haven't had caffeine yet!
I would have to say I am more like Donovan and would rather linger in my dreams than have to get up and face the harsh realities of life. Unlike Maddy I have no innocense of youth to buffer my world. All the kids just seem to waste their youth trying to be grown up and all us grown ups waste our lives trying to be young again. The cruel irony of life.

Here's a good one for you. All summer the only thing I have been adament about getting done is painting the house. We had bought all the paint right before Maddy was diagnosed and with the weather and the passing years the house is looking pretty rough. Well needless to say my husband has been less than enthusiastic about getting started and after much threatening he had finally gotten the main face of the house stripped to bare wood and that is where his ambition seemed to end. Well Last week I got after him to atleast start priming before it gets cold so the siding doesn't warp and I swear he cut 2 of his finger tips off last Friday to get out of painting all weekend!!! Seriously, he was mowing the lawn Friday night and I was in the shower getting ready for work when he comes down stairs and asks me if I could put a band-aid on his finger when I get out. I peeked around the shower curtain and he held up these to bloody, blunt fingers and I ask him how the heck I am supposed to put a band aid on that?!?!? I said he needed to go to the hospital and when he didn't rebuke I knew it was serious. We went to our local hospital first and they said we would probably have to go to Bismarck-about a 5 hour drive from our house- to see a hand surgeon because they couldn't fix him. Luckily there was a hand surgeon in Fargo-only an hour from home- who was willing to come in on a friday night and stitch up my husband after sticking his fingers under the mower deck. He got lucky and though he had ground up the ends of 2 of his fingers pretty good, the one he fractured the bone, the doctor didn't have to amputate the tips completely off. There was just barely enough tissue to close over the stumps. When he said amputate I just cringed, that is just not a term you want to hear in relation to any one person in your family ever, let alone twice in 2 years. Neddless to say he got out of painting all weekend! And if that wasn't enough he wakes me up at 6am Sunday morning all upset because it felt like there was something stuck in his throat and he couldn't breath. Well I look in his throat and his uvulla is swollen up as big as a rubber bouncy ball and blocking his airway so back to Fargo we go. They put him on steroids to help reduce the swelling and after his hand heals he will go in to see if he can have it removed. It's always something around here. Donovan hasn't gotten his yearly mystery illness this summer so I guess Donny felt he should liven things up around here. God forbid I should ever forget what the inside of a hospital looks like! Speaking of his bloody stumps I just changed the bandage on one and lets just say-GROSSS!!!
Here's a lesson for you boys and girls-Keep your fingers-and toes, hell-all body parts!-away from moving lawn mower blades, and if you are falling, it is better to fall than to grab onto a mower deck for balance!

With that bit of usefull wisdom I will bid you Goodnight!!

Saturday, August 13, 2005 2:11 PM CDT

My precious little darlings are finally home after what seemed like an eternal 5 days at cancer camp. And now I am wondering why I was so anxious to get them home?!?!? After a fun, non-stop, activity filled, over stimulating week at camp, home just is to boring and unexciting for my little campers so they have decided to keep things lively by constantly argueing about every aspect of camp. If Donovan said it rained then Maddy will say it didn't. If Maddy said they got to drink Mountain Dew- which mom can't understand why the camp directors would do that to themselves- than Donovan says they drank only water. I am wondering if I can send them back! I was so lonely for them all week and now I remember why I SENT THEM TO CAMP IN THE FIRST PLACE!!!!
Aside from the inability to agree on any of the camp facts, they had a great time and I survived my first seperation from Maddy. The camp counselors said they were all expecting Maddy to get very homesick and want to call me but to everyones amazement-and my despair-:)-she was totally fine and didn't need mom at all! Mom on the other hand contemplated sleeping outside the gates all week and stalking my kids like the overprotective and sometimes neurotic parent I am. Donny frowned upon this idea - so typical-and made me drive away, leaving behind my prescious babies to face their first camp expereince without me there to make sure they had on thier sunscreen and bug spray,washed thier hands, ate thier meals,brushed thier teeth, changed thier underwear, take thier meds,put on a sweatshirt when they're cold,wear thier ear plugs,ect.,ect., and to think they survived!!It's amazing how much we parents can underestimate the rest of the population when it comes to looking after your kids. And with all these things that I fretted over all week at no point in time did I worry about my 5 year old daughter hooking up with a new boyfriend and smooching at the DANCE!!!!!!!!! Now I was pretty sure when I dropped her off on Sunday that she was not yet a teenager and into cute boys and kissing, but when I picked her up and one of the nurses told the story of her first kiss with Nicholas I had to double check that she was my kid! So here is the story as I was told with no help from Maddy who is stating that she doesn't kiss and tell!
- The music started playing at the dance Wednesday night and from across the crowded room thier eyes met and they slowly walked towards each other. She curtsied, he bowed, and he took her hand and led her out onto the dance floor. They held hands and danced, eyes locked unto the others gaze and they swayed to the music, never breaking the eye contact between them. Cameras came flying out of the staffers pockets and Maddy and Nicholas danced as if oblivious to the flashes around them. Maybe they thought it was the old fireworks going off!?!?- After the song they walked outside still holding hands and then he leaned in for the kiss, planted one right on her cheek and Maddy gave him one back! Now the nurse telling me this says she is 30 something years old and never had a romantic experience like that ever-well unfortunately neither have I and really was hoping that I would before my 5 year old daughter!!!!!! Maddy is fortunate that she is 5 and we all think it's cute at this age, now if the camp counselors are telling me this in 5 years down the road it will not be so cute! How fast these kids seem to grow up. I don't remember having a crush on a boy until the 4th grade, and certainly not before I even started kindergarten. I was still dead set that I was going to marry my grandpa 'cuz when I was 5 my grandpa was the greatest thing since sliced bread. He used to take me for long walks in the summer that always ended up at the Dairy Queen and I was "his girl". But his girl and only his girl was I and not at all interested in the snot nosed-really they were-little bratty boys that were in my neighborhood!

Other than that not much was said about the week other than the counselors all looked quite happy to see the parents returning to claim their heathens, I mean bundles of joy and take them home!

I managed to work this week that I had "off" from the kids and Donny has started sanding down the front of the house so we can start painting it. There is so much that has been neglected around here these last few years that I wonder if we will ever get the yard and house back under control. One day at a time I guess.

School starts in a few weeks and Maddy is insisting that she gets her ears pierced like Emily's before she starts kindergarten. I'm still thinking about that one.

Well as I close today I ask all of you to please remember to keep Christopher in your prayers. His ewings has spread through his lungs and is wrapped around his trachea now. He will be getting some chemo to control the growth but paleative care has been called and his prognosis is not good. My heart is breaking for this family and thier precious little boy. They need as much love and support as they can get now so please leave them a message of support in thier guest book and say as many prayers as you can for them.

Saturday, August 13, 2005 2:11 PM CDT

Sunday, July 24, 2005 2:09 PM CDT

Do you ever feel like you have had too much vacation? I really didn't think it was possible until this last week when we went to see Donny, who is still interning in Milwaukee,WI. He has been there all of July and won't be home until this weekend so I decided last week to load the heathens, I mean beloved children, into the van and head east to the land of trees and highways. Now my dear husband had told me it was about 12-15 hours from our house to Milwaukee (He was a little off!)so I decided the best thing to do would be to break up the driving and get as far as Minneapolis MN on last Wednesday night. Now for some reason I had a mental lapse of my own and thought that the cities were actually an hour or two further than what they actually are. All in my favor I thought as I reached Minneapolis at 9:30pm instead of the midnight I was planning on. So I called my favorite uncle and asked him if he was up for some company. He gave me the directions to his house in St.Paul and what should have been a 20 minute trip through town ended up being a 2 hour detour north of the cities. Somewhere between hanging up with my uncle, refereeing world war 3 in the back seat and the hideous traffic on I-94, I missed my turn and ended up north of the cities by about 30-40 miles. Now I am one of those drivers that once I get going I like to just go unless there is an attraction or a Walmart I haven't been in. I do not like to stop for potty breaks, so when I felt the need to go around 8pm I blew it off because I was so close to being there. Now it is 11pm, my eyeballs are floating and I am lost in the country, in the dark, with swarms of blood sucking mosquitoes hovering around my van just waiting for me to break down and bare my overly fleshy butt on the side of the road. That just wasn't going to happen. Now my uncle usually goes to bed early and I did not want to wake him up since I knew he had to work in the am, so I call my husband in Milwaukee to direct me back to St.Paul. Now the irony of this is the fact that when I am going to go on a trip I start packing weeks ahead of time to make sure that I pack everything I need and usually don't need, but do you think for one second I thought to pack a MAP?!?!?!? Luckily Donny's roomate had a map and I was almost to my uncles by the time Donny got his Streets and Maps program to come up on his computer. Some times modern technology just isn't as good as the old stand by! We pulled up in front of my uncles house and I made a beeline for the bathroom, thankfully I remembered where it was!

Thursday we were up, showered, dressed, fed, packed up and back on I-94 by 9am. I was expecting a good 8 hours of driving that day per my husband so I wanted to get going early. Well needless to say he was wrong and we were an hour and a half away from Milwaukee at noon. Now Donny was in Green Bay and wouldn't be back to the apartment he was staying at until 7pm! Luckily we were by Wisconsin Dells so I stopped and walked around with the kids all afternoon in the 98 degree heat and sizzling sun until we had killed enough time to continue on and meet Donny. Now for those of you who are not familiar with Wisconsin and particularily Milwaukee, I will give you some tidbits of advice I learned the hard way.

Speed limits are mearly a suggestion in this state of highways and bi-ways. Driving the posted speed limit could get you killed-if not by being run over than by road rage.

Make sure you have a clue as to where you are going and stay close to the exits. People seem to think it is a game to saddle up next to the out of towners and not let them get off on thier exits, despite proper use of turn signals, hand signals and in the end-finger signals. So unlady like I know but after being harrassed by some overly peirced punk teenager who kept laughing at me as he kept me from turning for 10 exits, I was not in the mood for manners.

Also people there have this need to always be in front of the line even if the line isn't going anywhere. I had more people cut in front of me to gain two feet in deadlocked traffic than I can even count. As soon as one lane would move a foot or two every turn signal would come on and everyone would try and cut over. And so when the line they all just got out of moved a few feet they did it again. It was absolutely insane.

I also learned that my husband is even worse than I am with directions and by the end of the trip if he told me to turn right I turned left, just because I knew he would get us more lost than I would. We spent most of our three days in Milwaukee lost and if we weren't lost we were trying to entertain to overly excited kids who could have cared less about Milwaukke and just wanted to get back to Wisconsin Dells and go to the waterpark. We thought we could remedy that by taking them to the beach on Lake Michigan but after 2 hours of driving, much anticipation, and little patients left for delays, we got there only to find out all the beaches were closed do to an extremely high e-coli bacteria count in the water. So not good timing for that. We did end up finding a little carnival that the kids could go on rides at so Donny and I stood there for 2 and a half hours in the sweltering heat so that the kids could burn off some of their abundant energy and we could say they got to do something other than drive in the car and ask-"Aren't we anywhere yet?!?!?!"

Saturday was supposed to be a scorcher so we decided to take the kids indoors to the Milwaukee Public Museum. It was nice and cool in there and with 3 floors of exhibits I figured we could kill an afternoon. It was a really neat museum and the kids actually really enjoyed it. Donny took Donovan to see the IMAX Nascar Movie and I sat with Maddy in a little tropical room filled with hundreds of live butterflies in every size and color you could imagine. As you sat and watched them they would come and land on you. Maddy couldn't have been more thrilled. At one time she had 4 huge beautiful blue Butterflies on her. I will try and get the pictures in her photo album. It really was neat.

We decided Saturday to give in to the kids and head back to the Dells and go to the waterpark, so Sunday am we headed out and got to the park at 9am when they opened. It was supposed to be around 100 degrees that day so it was the perfect day to be in the water. We all had a blast. We spent all day -until they closed at 8pm- and didn't even get through all of the park. There weren't hardly any lines but it is just so big at Noahs Arc that you just can't do it all in one day. I also came to realise that if you want to go on vacation one should start training a month or so in advance for it. Every ride was up atleast 3 or more flights of stairs and being that there was no wait in line you where at the bottom of the ride before you even got a chance to catch your breath from the walk up. Let me tell you I had a few sore muscles that night! But it was fun. Maddy was a little upset that she was not tall enough for some of the rides but there was plenty for her to go on anyway.

Monday we decided to take a boat ride up the dells and my gosh is it beautiful. Thank God that a very insightful man had the sense to buy up 95f the land on the Dells and put it in a conservation trust so it is as pristine today as it was 100 years ago. There are no houses, resorts, billboards, signs, public access areas-nothing. Just nature the way it should be-without humans. That just never happens in this day and age. We went to the Ripleys Believe it or not Museum and to the storybook gardens and petting zoo were we all got to pet a live lion cub, and he wasn't a tiny baby either. He weighed around 100 lbs and was a bit on the playful side, so they took him back to his pen before I could get my camera out for that one.

Tuesday am Donny headed back to Milwaukee and I headed to the cities. This time I called my cousin and talked to him on the phone until I pulled up in front of their house!. The kids and I spent the afternoon at the Como park and zoo by my uncles and I have to say I was so tired I really wanted to do nothing more than head home but Maddy had free passes to use at Camp Snoopy at the Mall of America on Wednesday so I forced myself to stay for one more day of "fun".

Wednesday was 8 hours of screaming kids-not mine, thank you lord- noisy rides, blistered feet and overly tired kids. They were actually very good on Wednesday just alittle tired and it was very hot in the Mall that day. We walked all the floors-correction, I walked all 4 floors of the mega mall while Maddy and Donovan rode like royalty in their red wagon I brought along for those times when I knew I was going to hear,"But my legs hurt- I can't walk any further!". We spent an hour or so at Lego land and Maddy got to pick out some pink and purple legos from their pick a brick wall. She is just too thrilled. Now she has her own "girl" legos and has been building away with her brother since we got home. We finally left the mall around 7:30 and to make the trip complete I ended up on the wrong highway and spent an extra hour driving all the way around the cities before hitting I-94 and finally heading west and back towards home. With all the road construction along the way we finally got home around 1am.

I definitly feel as if I have had too much vacation. Well aside from spending most of the time lost, the kids were really good, everyone enjoyed the things we got to do and we are all home now, safe and sound and in one piece.

The kids are now gearing up for cancer camp in August and I don't even want to think about having to pack anything again!
Well I suppose I had better go and do some arts and crafts with the kids. Maddy has been in here 3 times to see if I am ever going to be done!

Oh, One last thing. Friday morning I awoke to this adorable little face peering over the side of my bed at me smiling from ear to ear as she held a tray of peanut butter toast and applesauce that she had made for me all by herself. She said because I was so tired Thursday she wanted to make me breakfast in bed so I could get some extra rest!! Is there anything sweeter than that?!?!? Now to do that she had to get the toaster down from the shelf above the counter along with the plate and peanut butter, actually make the taost and butter it-which she did a very good job of-and then assemble it all on her tv tray and carry it up 14 stairs to my room without dropping or spilling it! What a kid. So Friday morning I got to lay in bed with my princess, eating peanut butter toast, sharing a bowl of apple sauce and watching her favorite cartoons on TV, while Donovan slept in and caught up on some much needed rest himself. Pastor Janna-that is what heaven is like.

PLEASE keep Christopher and his family in your prayers. He will be having scan results on Tuesday so please pray that it is all mostly scar tissue and not the relapse of ewings that they fear. Please send your love and support to his parents Jeff and Pam as they face this week with much fear and trepidation.
Also for all the wonderful people that send Maddy and Donovan cards and letters-which they love so very much- please note that their address has been changed to PO Box 404, Mayville, ND 58257.

God Bless you all and I hope you are having a great summer.

Love-Holly

Thursday, June 30, 2005 12:59 AM CDT

The joy of Maddy's clear scans has quickly been replaced with guilt, heartbreak and such deep sorrow. Our beloved little Christopher seems to be relapsing with Ewings. He just had been released from the hospital about a month ago after a stem cell transplant that had followed chemo and an amputation of his ribs. His tumor was in the same location as Maddy's and with him being young like Maddy we instantly felt the connection with him and his family and have prayed and cried with them this last year. We also celebrated with them when they brought him home and he started to recover steadily from the great trauma his little body had just been through. I talked with Pam on the phone but a few weeks ago and her voice was so light and happy. I filled with joy when I heard Christopher giggle in the background while playing with his sister. They were finally basking in the warmth of the light of hope after emerging from the dark tunnel of despair and anguish they had been traveling through this last year after Christophers diagnoses. I remember that feeling. I remember thinking to myself as I felt the sunlight on my face that summer after Maddy finished treatment, Had the sun always been here? Had it been out at all this last year? I couldn't remember. But I remember how it felt to feel like we were embracing a new world after treatment and her clear scans. Every thing seemed so bright and clear, fresh and new. I heard that in Pam's voice when I talked to her and I felt so at peace for them. Now today as I read her journal entry my soul feels as gloomy as the weather has been outside. The sunshine was gone from Pam and her words in her journal were filled with despair, fear, desperation and a feeling of defeat. I couldn't stop the tears from coming. I still can't. I know how I felt like I had just been run over by a freight train-twice- when we found the lump on Maddy's back last October. I wanted to puke, I wanted to run away, and I just wanted everything to quit spinning around. I was only making it minute by minute until that scan came back all clear. I can't imagine having gone through the transplant and the horror that it was and now be faced again with another battle. I am not saying at all that I don't think Christopher will make it because I really believe he will come through this and be cured, but the pain and suffering him and his family continue to be put through just breaks my heart.
You are NEVER THE SAME after going through cancer treatment with your child. Something inside of you changes forever and the more you have to go through the more you change. Some of it is good but some of it is not as desirable. Your tolerances change, your attitude changes, your heart gets a little thicker and your resilience a little weaker. When you can't feel the sunshine on your face because of the dark clouds that hang above your head, then you start to forget that there is sunshine. I don't want them to forget about the sunshine.
I have said many prayers for them this last year and will be saying many, many more. Please-to all of you who come and read my journal, please take a minute, click on Christophers link on the bottom of this page and leave a message of hope and love for Pam and Jeff. Please send your prayers and positive energy to little Christopher so he will have the strength he will need to fight this battle. He will win but it's not going to be easy.
I pray to God that he is beside them through this all.
And the still scared and partly selfish part of me prays that I never have to go through that hell with again with Maddy.
Who ever you are, where ever you are at, if you are a parent, grandparent, aunt, uncle, sibling, cousin, best friend or whatever- hug your kids, your loved ones, hold them close to you and thank God that you have them. Get your butts away from the computer for awhile and let them know that you love them. I'm going to do that right now.

Monday, June 27, 2005 9:26 AM CDT

CLEAR SCANS!!!!!!! CLEAR SCANS!!!!!! CLEAR SCANS!!!!!!!!!

15 months clear and cancer free-post treatment!!

I am so relieved, happy, and exhausted!!!!! And Maddy is just taking it all in stride. She didn't even wimper when they got ready to do her IV, she just held out her tiny little hand and said," This one has good veins!" What a kid. Scans went fast as it is so routine. When we went in for x-rays she went right to the board, put her chest on the x, her chin up to the top of the board and held her arms out, all the tech had to do was slap the sticker on the film and shoot! How many 5 year olds do you know that can do that?!?!? Well any that have been through cancer and hopefully you all don't know too many of them. It was very nice to see all our friends and sign Maddy and Donovan up for cancer camp in August. Maddy and Donovan are just pumped for that! A whole week with no mom!! It will be weird for mom. I have never had the kids leave for a week while I stayed home, I just don't know what I will do with myself! I just want them to have fun-together. They have had so much jealousy between them and I hope by them both getting to go together that it will be a good experience instead of, "She gets to do everything because she had cancer, or, He gets to go camping and do fun stuff because he didn't have cancer." I am hoping someday it will get better. 5 and 7 are stinky ages to begin with so it could be awhile before we are down to 1 or 2 wars a day!
We also took a tour of the new childrens ward and it was pretty nice. The oncology rooms all have thier own air flow system, jacuzzi's, tv's with playstation and vcrs-maybe even dvd's too. They also have fridges-Now how much nicer can that be!!!- with beds for the parents and closet space!!!! They are pretty nice. The whole floor is decorated like a fairyland village set back in the mid evil times. The doorways look like quaint little cottages with the kids each having their own mailbox that drops the mail into their room. There is a huge statue of a little mouse dressed as a cobbler and right by the nurses station is a huge wooden tree that stretches out across the ceiling. It has a little door and windows and Maddy sat knocking on that door for 5 min trying to get the mouse to come out!! Sure would have been a lot nicer to have stayed down there than up in geriatrics during Maddy's treatment but I pray that we never get to find out what it's like to stay in the new part. The treatment room has a huge bubble machine with all kinds of lights that you can change the color of, the kids can even change the color of the water in the bubble tube. It was very cool. I'm sure that makes it a lot easier for the kids to have all those neat distractions during pokes and treatments.

It is still raining here and my basement just isn't getting much of a chance to dry up. I want to just back a dump truck up to the back door and start tossing everything out. I would have a yard sale but you just don't make any money on a yard sale and it is so not worth all the work and effort. I went to another auction with a friend of mine that buys and sells antiques and it just amazed me at how cheap everything went for. I bought an old 8mm video camera that was still in the box and probably never used, dated back to the 50's for $1.00!! Everything went so cheap, most items sold for only a dollar. One woman bought a new expresso machine for $5.00- they cost over a $100.00. Unreal. I think it is better to just give all my junk to the Boys Ranch and than get a receipt to use on my taxes. I first need it to dry up so I can actually get down there and get started. The sun finally came out this am so the kids are bugging me to go outside so I better go stand in the grass and see if I get eaten alive or if it's not to bad and the kids can go out. I hope you all are having an awesome summer and staying safe. I will write again soon! God Bless

Love-Holly

Tuesday, June 21, 2005 12:58 AM CDT

Once again scans are coming up in a few days and I am starting to worry. I know she is doing fine and has been healthy and active, but the handle on the anxiety control switch in my brain seems to have been broken off in the on position and I am sorry to say I don�t foresee finding a repairman for it anytime soon. I do have Ativan that I can take during this week every 3 months but I can�t stand feeling that tired all day so it is to be wired with nervous anxiety or a blob on the couch still managing an anxious filled thought here and there. I chose the first one. I do how ever take the little happy pills on the actual scan day because my nervous energy seems to cancel out the drowsy side effects of the pill so I am calmer and less edgy, well at least until the results come back and I hear the all clear-then I instantly need a nap! We go in on Friday morning so I would really appreciate some prayers coming our way for another all clear!

I wonder if there will ever be a day that we forget she has had cancer, if a day will come that we don�t make decisions and plans based upon that life altering ordeal. I am thinking right now probably not, but just maybe there will eventually be a day when I will have peace in my soul again. Although I was a worry wart before Maddy was diagnosed so complete remission of my anxiety is a pretty far stretch. One can hope though. At many times in our lives I am finding that hope is the only thing we do have, and with out life is not worth living.

Donovan has been enjoying baseball, I think, it�s hard to tell if it is the game he likes or standing out in the field picking flowers. Either way it occupies an hour of his day so all is well. They had sprayed the baseball fields a few days ago so the mosquitoes were down and I was able to let Maddy out of the car for that hour to run and play. Our yard is inundated with the little blood suckers and going outside has not been an option. A few mosquitoes got in the house and found Maddy in her sleep Saturday night, her arm swelled up and she had welts as big as golf balls. I really think she is allergic to them. Donny thinks they are fly bites but we have as many of them as we do mosquitoes so we will be in doors for the rest of this week. As soon as Donny can get the swamp we have for a yard now mowed down he will spray. I will have to take the kids somewhere for a few days and then hopefully we will be able to come home and enjoy spending sometime outside. Maddy and Donovan want to get out their slip and slide and ride bikes, I want them to be able to do that too without sacrificing a pint or two of blood. Every year I pray for a drought and we get flooded, so next year I am going to pray for lots of rain and then we will see if it is just mother nature messing with me!!!! I spent 7 hours outside on Friday with the kids, I mowed and they played. We had a real strong wind so that kept all the bugs in the shelter belt for the day and the kids had fun riding bikes and picking our almost drowned strawberries. We haven�t had enough sun to really ripen them yet and it has been so wet they haven�t hardly grown. My whole garden is a loss. I am thinking I am just going to pull up the fence and seed it for grass. The strawberries I will thin out and replant in tubs this fall and then I think I will be done gardening. I just can�t fight the weather and the bugs anymore. I will leave the asparagus and the rhubarb as they take care of themselves. That�s the way all plants should be don�t you think?!?!

Well Donny came home Friday night and will get to be home until July 5th and then back to WI he goes. He will be down there for most of the month. I am planning on taking the kids down there for a few days so we can take them to Wisconsin Dells and spend a little time away from here. We need a little vacation from here I think. Hopefully my basement will be dry by then!! I�m starting to hate them too! I need to get mine cleaned out as soon as the water dries up. I could have a pretty big yard sale with all the junk down there I don�t need but I just don�t have the time or energy for that. It is much easier just to pile it all in the garage as I clean and then have The Boys Ranch come and load it all up and haul it away. I have gotten away from my pack rat habits lately and feel the urge to purge. Less is more, the less you have the less you have to clean-Right!!! If I ever move it will be to a smaller house-with no basement!

Well I had better go and get the kids to finish up their lunch and get Maddy to lay down for a nap. She has been pretty tired lately and so have I, so I think I will go lay down with her for awhile. All my love and prayers to you all and God Bless.

Wednesday, June 15, 2005 12:39 AM CDT

4 Generations of Trouble right here where that cute little pink tutu had been! This is my mother, her mother, myself and Maddy with my niece in Colorado last week. I will let you figure out who's who! Donny had left for Milwaukee and Donovan was going to Boy Scout camp with my brother and sister-in-law so I decided to take the girls and tag along with my folks who where headed out to Loveland Co, for a much needed and long over due visit with my grandma. I had not seen her for 3 years with all of Maddy's cancer treatment and recovery. We would go out usually around the 4th of July and were getting ready to go when Maddy was diagnosed in 2003. It has been difficult not being to see or talk to my grandma for so long. We did not tell her about Maddy having cancer as she really could not have handled the news, her health has been fragile for quite some time. It was wonderful and yet heartbreaking to see her now. I don't know if I will get to see her again and she is getting weaker and less clear about who people are and what is going on. It is a reality of life that I am all too familiar with having spent the last 17 years of my life working in a nursing home caring for our elderly and this last year with Hospice, but when it is your own flesh and blood the sorrow strikes a little deeper in your heart. I feel selfish for wanting her to always be there even though her quality of life is not there and she so much wants to be with grandpa in heaven. I just thank God that I got to be with her now even if it was for such a short time and that Maddy got to see her also and will hopefully remember her. Leaving on Sunday was so hard. Not just leaving my grandma but the weather out there was so glorious! It was raining in ND when I left and it was still raining when we returned. The fields are all flooded along with my basement. The mosquito population has exploded to the billions now and it is just miserable.
I saw only 1 mosquito the whole time I was in Colorado, it rained but it doesn't get humid and the storms pass quickly. It was so wonderful to just be able to take the girls to the park and even just into the backyard of my aunt and uncles that we stayed at. (Thank you so much for letting us stay there this week and for all your love and support!) We haven't been able to do that here at home. The rain finally has stopped today but there is water covering my yard so mowing the foot high grass today is out of the question. I have been trying to wet vac the water in the basement but it comes in as fast as I can suck it up. I will have to wait for the water table to go down alittle before I can do anything with that either. I definetely think I could handle the mild climate in Colorado, maybe my next house will be in the mountains!! Well if I win the lottery that is, Colorado is not a cheap state to live in. I can always dream though, right!?!?

Donovan had a blast at his camp and got to make so many cool things. I will definetely have to think about putting him in cub scouts this fall now that he is 7. He really liked it. I think he also really liked spending all that time with his aunt and uncle as well. It just worked out all the way around. It was a good trip out and a fair trip back. There was an accident in the Black Hills on our way back and we were there shortly after it happened. The paramedics were still out on the highway trying to save the motorcyclist that was hit when we were stopped. The man driving in the car with his wife that hit him had already been taken to the hospital. It was one of those odd and very uncomfortable moments in time when you are forced to be a spectator to a dramatic moment in life, all we could do was just sit there in my van, and watch as a persons life hung in the balance, not wanting to watch and yet unable to take our eyes away. The steep hills jutting up all around us made it seem as if we were all stopped in time, cut off from the rest of the world at that moment. The emergency lights were flashing but it was earily quite except for the sound of the windshield wipers swiping at the rain rolling down the windsheild. We all sat in silence watching and waiting. The workers seemed to move in slow motion as they took pictures and statements from the witnesses, and the team of paramedics worked behind the white tarp that was being held up to block the spectators view. After a few more minutes a man came out around the sheet and with a can of spray paint made a large X on the highway to mark the spot where yet another life had been lost. I silently said a prayer for the cyclist and all the families who's lives where shattered in that one moment. Life can end so quickly, so needlessly. We finally were allowed to pass and I couldn't help but to notice the many signs along the side of that highway with a big X and the words THINK-DRIVE SAFELY printed across them. How many lives had ended there with nothing but an X left to mark the spot? It was a solem afternoon after that. The grey never seemed to lift over us for the rest of the way home.

Now that I am saddened again by the tragedy we had to witness on Sunday I think I will go and get the kids their lunch. I hope you all will be safe this summer as you travel and go on vacation. Thank you again for your continued love and support. God Bless you all and please be safe!!

Monday, May 23, 2005 10:57 AM CDT

No news is good news right!?! Sorry it has been ages since I last updated. Someone hit fast forward on my life again. It wasn't me either I swear!

Maddy had a blast at her ballet recital and so did mom. It really was a moment for me of getting to live vicariosly through my child. Sitting backstage with all the girls,pinning up hair, fluffing tutu's, fixing broken straps.It just doesn't get any better than that. The nervous excitement from all the kids was contagious and it all seemed so dreamy with the soft lights and the haze in the air from all the feathers and fluff that were coming off the costumes as the dancers practiced, and then just floated and hang in the air. A moment I had dreamed for.

Donovan ended his first season of soccer and he did pretty well too. I was glad that dad was still home to take him to practice as we were still having snow up until last week!!!I really do not make a very good "soccer mom" in the literall sense! If it's cold, windy and/or raining/snowing than I am not about to sit outside and freeze my hiney off just to watch the kids all huddle up an attemp to create a human wind block. Only in ND I swear do you need to send your kids to school with shorts and a snowsuit all in the same day, and if you think I am exaggeratting - think again! The weather this spring has been horrible but at least the late cold snaps have kept the mosquitoes at bay for an extra few weeks.
And now stay tuned for the Paranoid Moms Mosquitoe report- This just in- there is already a confirmed case of the dreaded West Nile Virus disease that has been found in a horse somewhere in ND. I can assure you now that diseased mosquito is surely headed straight for our farm and most definetley Maddy's not so plump little arm. We are officially at war!!!! LET NO MOSQUITOES LIVE!!!!!!- Please stay tuned for all your up to the journal entry reporting Mosquito reports- Paranoid Mom, signing out!

I can describe our weather up here as follows - we have a long, bitterly cold winter that is briefly interupted by a few months of ghastly hot and humid weather that lasts just long enough to breed a few billion blood thirsty mosquitoes and cause major flooding. And I can't understand why we are the least populated state?!?! :)

Now back to the kids. Donovan wants to play baseball this summer and I am helping put on Vacation Bible School next week for our church. I have decided not to enroll Maddy in summer ballet as Donny is going to be spending most of his summer in Milwaukee doing an internship for school and without him here I can't work. If I can't work than we can't afford many extra's. It wouldn't be so bad if it wasn't 2 hours round trip just in driving for a 45 min class. We will sign her up in the fall though. I think swimming lessons would be a better alternative this summer. Maddy still has alot of pain after to much activity and was having a horrible time with a nagging cough. A not very quick trip to the allergist revealed that once again our fateful genes are at it again and Maddy has her mothers allergies and her dads asthma. We now do inhalers, nose spray, sinus flushes and pills everyday. Kinda feels like being on treatment again with her schedule of meds. Since she has started her new treatments the coughing is gone and her sinuses have really improved. Thank God for that. I am still waiting on the test results for her work-up with the endocrinologist concerning all the hair growth on her back. It is about 2 inches long and starting to spread down the backsides of her arms. She did not have very many steroids during treatment and are hoping that the chemo didn't kick in any of her hormones. I don't know what it could be and neither do the dr's. The dermatologist said he'd never seen that happen before and the endocrinologist was suprised by it too. Her onc said it should have fallen out by now if it was going to, so I don't know. Hopefully there will be a letter in the mail today with some info anyway.

School ended Friday and we got to kick off our summer break with a tornado blowing around the area. Someone said it was about 5 miles south of my house. That's just a little to close. Luckily it went south of us and didn't cause any damage and no one was hurt. We were all down at the park doing a scavanger hunt as part of a picnic party the school was having when the skies let loose and we were dumped on, the kids thought playing in the rain was so cool until the fire dept evacuated the park and they started to panic. When we got home thay stripped their soaked clothes off at the door and started racing up and down the stairs, hauling all of their toys down so they wouldn't get sucked up out of the house. That's all I needed was 2 dripping wet kids running around the house leaving traills of toys and water were ever they went. Needless to say we had storm education that night at our house and they did settle down but their toys have not yet made it back up stairs to thier rooms. Todays project #1.

We have a very busy week scheduled and are really looking forward to Emily's high school graduation this weekend. I just couldn't be anymore proud of her. Gosh you'd think she was my own kid! She is such a beautiful young woman with such an awesome spirit. We are all so looking forward to getting to see them all again and of course Maddy has been talking non stop about her Emily since the invitation came in the mail!

Well speaking of mail I should probably go up and get mine and wash out and treat the dogs hotspots on her tail. The poor dog has a bucket tied to her head so she can't chew the skin off it or pull out anymore of her hair. The poor thing looks so miserable, it's always something around here!

Take care and God Bless to you all. Thank you so much for your continued love and support. Please keep praying for Maddy and Emily to remain in remission and be healthy and happy. Also pray for little Christopher to continue to make progress at home after his transplant- we love you Christopher!- and prayers to Lance that he has success in his treatment for brain cancer nad strength for his family. Our prayers and support go out to all kids and adults who are battling with cancer or disease in their lives. May God give you strength to face each day with compassion and hope.

Wednesday, April 27, 2005 10:02 AM CDT

It is SNOWING!!!!!!!! I seem to recall that in my last entry I was talking about our 90 degree day!?!? Of course it had to snow today because I just put the kids snow boots and coats away yesterday. I was feeling fairly confident that we were done with winter after a month of no snow and total summer temps. But then again what the hell do I know?!?! When you live in ND assuming anything about what the weather might or might not do is about as productive as argueing with a 2 year old, because regardless of what you do or say they are going to do whatever they want anyway. I gotta say though being woken up at 7am by your daughter delightedly yelling,"It's snowing, It's snowing!!" and you knowing that it is the end of April, well it just kinda wrecks the whole mood for the day. The thought of having to go downstairs and dig out the winter coats, hats and gloves after JUST putting them all away doesn't help either. And here I thought I was making progress!

Well tomorrow is Maddy's big debut and I can't wait!!!! Of course because we are all making a fuss and she has had ballet rehearsal 3 times this week already she has decided that she doesn't want to do the recital anymore!!! Like that is even optional. The costume has been bought, the lessons paid for with blood, sweat, and the skin off of my knuckles-Ok, ok I'm exaggeratting here but when I write out the checks for those lessons it feels like something that painful should only come with blood, sweat and pain -right!!!! :) - All worth it though to see my little Princess standing up there on stage, with the spotlight shinning down on her, in her hot pink, gold trimmed tutu all wrinkled and fluffed out around her, and her gold bow slowly slidding down the side of her head because her hair is still to baby fine to get a barret to stay, dancing out of sync and to her own beat-well, what can I say-

ballet classes $320.00
getting to watch your dreams come true-priceless.

Check out the photo album as I am finally going to change the pictures in there. Yah I know- don't faint or anything. Also please keep praying for little Christopher, he is making slow but steady progress and still needs all the prayers he can get. Love you all and God Bless!

Tuesday, April 19, 2005 10:56 AM CDT

The wind is strong and cold, my headache is strong and getting old!!! It seems that when ever the wind blows my head starts to ache. It has something to do with barametric pressure but I'm not up to being scientific today.

Maddy and Donovan have been well. Donovan is totally enjoying soccer and now wants to be in baseball this summer. I have a feeling I am going to be busy this summer running these two between activities. Maddy of course wants to take summer ballet and they both want to take swimming lessons. Theres cancer camp and Vacation Bible School, summer reading, Boy scouts, phew-I am tired just thinking of all of it.

Maddy is getting excited for her ballet debut in 2 weeks and I can't wait either. I of course watch the routine at ballet lessons but they are going to be so cute all dressed up and prancing around the stage! Luckily there won't be any mirrors on stage for Maddy to stop and do a few poses in front of like she does in class. What a little princess!

Yesterday it was 90 degrees out! I just can't get over the fact that we are having summer weather in April. The last few years we were still having blizzards and snow storms in April. I'm not complaining though. Although I did see a couple of mosquitoes getting it on the other day on my garage so I squashed them!! Donny has put some larvae killer in the drainage ditch in front of our house and the mosquitoe eater is already plunged in out in the back yard so I'm ready for the little bas!@#$@. I got the sprinkler out and the kids had a blast running through that. I almost got the little pool out but it was pretty windy yesterday and didn't want to have to fight with it alone. Not to mention it needs a good cleaning and after cleaning house all day I really didn't want to clean anything else.

I hope everyone who stops by here is also stopping by and sending prayers to little Christopher who is slowly starting to recover from his stem cell transplant. The poor baby has been to hell and back along with his parents. They all need your love and support. I thank God every day that we did not have to go through what they are with Maddy. We were very lucky indeed. Christopher is an amazing and strong little boy who I just know is going to bounce back from this and be up and running in no time. The road ahead of them is still long but it is going to be a much smoother ride once they get past this. Please stop by and leave his folks a message of support, they need it.

Well Maddy got to see her Emily on the 9th and we all had a wonderful dinner at the Olive Garden. It didn't dawn on me until we were leaving that on that exact date one year ago we were all eating take out Olive Garden at Maddy's end of chemo party up at the hospital! It was the very last day of chemo for them both that day. What a great way to end a very triumphant year! We now can't wait to see Emily graduate from high school next month, what an awesome thing to get to be a part of. We couldn't be any prouder of Emily for all she has accomplished and overcome this last year. She is such an awesome young woman, and she means the world to little Maddy!

Well Donny is busy finishing up on school projects and getting ready for finals. We see him every once in awhile emerge from his office to retreive sustanance and then back he retreats. I am beginning to hate his school. There is so much that is getting neglected because he needs to study all the time and I can only do so much myself. As soon as school ends he will be off to start his internship and so there will be no change or break to look forward too. As soon as his internship ends he will be back in school. It is going to be a very hard year to get through. I know the rewards at the end and the job he will get will benefit the whole family, but it is hard to trust in the future when all you know is the now. Not to mention that I am not much of one to put a whole lot of faith in the future. You really just never know what is waiting for you- good or bad.

So anyway I will go now and return to bed with my ice pack and hopes that the wind and my throbbing head will both start to subside. My love and prayers to you all. God Bless!

Monday, April 4, 2005 8:58 AM CDT

Spring has come and so has another round of the stomach flu!I had taken Donovan in last Wednesday as he said his throat was sore and wouldn't ya know it but the poor boy had strep throat and another ear infection! Yippee!! Luckily he got on antibiotics soon enough and was able to make it to school on Friday to pass out his party invitations for his birthday on Saturday and as an added bonus,pick up the flu bug. Out of 20 kids in his class 10 were out with the stomach flu Friday and I am sure the rest fell victim to it over the weekend. I am happy to say though that Donovan managed to hold off on getting sick until Saturday night - after his party! We did end up with 9 at his party and everyone had a blast. It has been almost 2 years now since Maddy was diagnosed and I have let kids into my home. I had forgotten how much fun a home party could be and the kids were all so good. Had I known it was going to work out so well I would have put down a few more hours on the invitations for the kids to stay and play games. We got a pinata for the kids to break open but I swear it was steel reinforced as my husband ended up beating it with a baseball bat to get it to break! Donovan got gifts this year that were just perfect for him and mom and dad only gave him 1 gift-his new red bike! Talk about a happy little boy! Well until about midnight when he started puking and then had the dry heaves until almost 4am when mom dug out those little anti nausea pills of what you would expect to be made of solid gold for what they cost, that Maddy took during chemo and put an end to the puking. After the puking comes the headache that tylenol and ibuprofen can't even take the egde off followed by the long night of coughing and gagging. We should be at the end of it today but I will probably keep him home tomorrow too, just to give his poor little immune system time to recoup. I am suspecting Maddy will have it by Wednesday. I just can't fathom that she would be able to fend off such a potent bug. I felt so bad for her Saturday night. She had ballet practice in the morning and then ran all day with the kids playing and riding bikes. She had so much fun but at night her legs hurt her so bad. After spending all night trying to ease her pain without drugs and helping Donovan I gave in and gave her ibuprofen around 5am and she slept sound until after 11am. The pain is from her kidney damage the dr's say and we need to try not to give her alot of medicine that could worsen the damage so I try to soothe her and rub her legs before I whip out any meds. Sometimes it works and sometimes it doesn't. It's hard to know that she will have pain after a day of activity, but it is also so important that she stay active and not become a couch potato. She needs to exercise, I just wish it didn't hurt her to do so. I am starting to feel run down today and think that I will spend much of my day in bed resting with Donovan. Donny has been really studying hard and trying to get his last big projects of the year done before school ends for him in 4 weeks so he has really been sawing logs at night. Thank God there is a bed in the office although I wasn't smart enough to go down there last night until after 3am. I am sooo tired today.
Well I think I hear my little guy moving around upsatairs so I had better go check on him.

God Bless and keep praying!

Friday, March 25, 2005 4:06 PM CST

ALL CLEAR!!!!!!! Maddy's scans were all clear. Thank you God!! Her chronic coughing is probably due to allergies and/or asthma. We will take her in for a complete allergie and pulmonary work up in May. I have allergies and Donny has asthma so that isn't a big shock.
We went to see the dermatologist yesterday also about the hair growth on her back but he had never seen that before and is refering us to a pediatric endocrinologist to do a complete hormone balance work up to make sure that the chemo didn't change her metabolism to much and kick in her hormones. Her onc doesn't think so but we will have it checked anyway to know for sure.
Her chronic pain and headaches are due to the kidney damage and the amount of acid that remains in her blood. Her kidneys leak potassium, glucose and magnesium and infections love glucose. She will always have a problem with bladder infections and because of the leakage from her kidneys it creates an acidic enviroment in her body which makes you ache really bad. We are trying vitamin B complex and tums to help reduce the amount of acid in her blood. I bet you thought tums only reduced the acid in your stomach, right?!? So hopefully that will work and she won't hurt so much.
Of course she was awesome all day and breezed through her scans. She was so happy to see everyone and the staff at the cancer center where all so happy to see her. The hugs lasted all day! And what awesome news too. Her next scans will be the end of June.
Well I am so exhausted and so stiff from the stress that I am going to cut this short and try to relax now that we know everything is OK.
Thank you all for your prayers and continued support. We love and God Bless.

Tuesday, March 22, 2005 5:06 PM CST

I sit here today popping ativan and contemplating rational thought versus gut fear. I took Maddy into the urgent care clinic on Sunday because her ear infection just doesn't want to clear up. Her tube in her left ear is blocked and that explains that. A few ear drops and we are good. Well I brought up the fact that she still has a mild, but lingering cough. Now we have had her into see 3 doctors total for her cough, all saying it was nothing. This dr said she couldn't here any breathe sounds on the left side. The room spun. For those of you who don't remember there where 2 reasons why Maddy had an x-ray that day I brought her in when I found the lump. 1-she had a lump,-2-there where no breathe sounds on the left side. Can we say post traumatic stress right then and ther?!? The dr decided to do a nebulizer or vapor mist breathing treatment on her and when Maddy was finished the dr came back and said she could hear now. She said she wasn't going to use the diagnostic tool of x-ray to confirm her suspision of pneumonia because Maddy gets scanned enough. Now why didn't any of the other dr's pick up on this???!!! Pneumonia is still a killer. UUUGGGHHHH!!!!!. So we are on new antibiotics and an albuteral inhaler. I am such a freak I make Maddy jump up and down to loosen the "coughs" out of her lungs throughout the day. Yesterday she almost sounded dry when she coughed but today she sounds wet again. I of course got up at 7:30am on Monday and had her oncologists phone number on speed dial so as soon as the phones at the cancer center turned on at 8am I would be the first caller.I told her dr to move her scans up to this week before I have a fricken heart attack from the anxiety. He agreed. He also wants to make sure it is just pneumonia and not something else going on in her lungs. I am so petrified of relapse that you just can't even imagine. I literally have become physically ill with this whole thing. Maddy has just been so sick since the beginning of February with the flu and colds, this cough and ear infections. Her skin is pale and her eyes are dark. Just looking at her makes my stomach start to knot up. She has been taking very long naps in the afternoon and she seems to get tired so quickly. This also scares me to death because even on chemo she rarely napped or had a loss for energy.
Her ear looks much better today but her throat is red and sore. I think that is from all the drainage from her fountain of a nose which has also been a chronic problem. She complains of stomach pains, headaches and joint pain. Somedays it seems like I spend my whole day just trying to tend to all her needs. I am so mentally and physically exhausted, and scared to death. I feel as if the "other shoe" is just hanging there in our future, dangling by an unraveling thread, waiting to drop. Metaphorically speaking. There are some days that I can be very positive, even make plans for the future and not think of cancer. Honestly - I swear! But at uncertain times like this I can't even plan the next meal of the day. It is going to be a torterous day tomorrow as we wait for scans on Thursday. Maddy has a 9am appt with the dermatologist that we have been waiting since OCTOBER OF 2004!!! to get into and then she will have her IV started at 11:30, labs drawn, go down for her chest x-ray-which I will stand in the x-ray room until they show it to me- and then CT scan at 12:30. Scan results at 3pm with her onc. One long damn day. Good thing I have been saving up my ativan- I think I will need it that day. Donny won't be able to come until the 3:00 appt with her onc so hopefully I can hold it together all day. Maddy's just so happy to get to go see her favorite nurses she doesn't even care that she will have an IV! Now I just need to be on the ball enough that day to remember to pack her emla cream, tagaderm patches and snacks and drinks for the day. I should actually go pack her a backpack today so that I only have to put in her ice water and juice on Thursday am. I'll make a mental note to do that. Yah.
I am keeping her out of pre school all this week and Donovan, my poor little man will get shuffled between great grandma and grandma on Thursday until the dust has settled from my jumping up and down at the announcement of clear scans. Otherwise one should be prepared for what could be mistaken as siesmic activity as I hit the floor if the news is anything but good. That I'm not kidding about.
Donovans birthday is the weekend after this and I should be planning his party but I just can't function at all until I know that her scans are clear. I feel bad about it but I can't move forward until Thursday is over. It's not like I am missing his birthday or even postponing it I just am delaying the planning, which I usually have done weeks if not a month or more ahead of time, so waiting to me seems neglectful.
I also can't work with her sick and me so stressed so I am off all week. That is not necessrily a bad thing. I am not getting anything at all accomplished at home but that's ok too.
Maggie-our white dog- did come back and she has stuck around now so hopefully she got her wandering bug out of her system. She was over by the neighbors and I think she had been there or around there the entire 4 days she was gone because they have puppies she could play with. Maddy's solution is to get Maggie a puppy. I can not emphasize enough to the kids that we are not going to get any more pets. Especially not ones that break your heart when they die. Lately Maddy has been crying over cats that died over 2 years ago. She has been very down lately and that of course freaks me right out because Maddy has always been the epitamy of happiness.
In short I am a nervous wreck, Donny was gone to Milwaukee for 8 days and I do not function very well when my soul mate is gone. I do not know what the hell I am going to do this summer when he goes back to Milwaukee for 12 weeks. I will be certifiable by the end of summer.
I do know I am going to go down at least once with the kids this summer and hopefully will be able to go see little Christopher live and in person. I can't wait to hug everyone of them but especially Christopher. I think about him every day and pray that he will never have to go through this hell again.

Well i should actually go feed my family some supper and cuddle with the kids on the couch. I got Maddy the Dora the explorer easter egg hunt movie today. 96 minutes of mind numbing entertainment. Just what I need for today!

I love you all and please pray that there is nothing at all wrong with Maddy other than this pneumonia. PRAY FOR CLEAR SCANS___PLEASE!!!!!!!

Friday, March 11, 2005 9:40 AM CST

I dedicate this journal entry to the memories of Beufford July 1997 to March 9,2005 and Rosco 2000 to March 2,2005.

This journal will hold non of the previous optimism or feelings of joy and luck. It has been a very hard week for us.

I will start with the loss closest to our hearts. Last Wednesday we had to do the hardest thing ever. I had to take one of our dogs, Rosco, to the vet to be put to sleep. He was not ill or old, he had become very aggressive and was a threat to Donny and I, the kids, and our other animals. Whenever our male German Shepard,Zahr, walked by the kennel he would go nuts, if a strange animal came in the yard then Rosco wanted to kill it. He had attcked Zahr twice and the last time it took Donny and I using a 2 by 4 to pry his jaws off of his neck. What if the kids had been in the way? I had been bitten when I was in the kennel with him and Zahr walked by and I was to close to the fence.To have to make the decision to end a life is not one I really feel I have the right to make. I had talked to the vet, the adoption agency we had gotten him from and a few animal behavior experts and they all agreed it was the only option for a viciously territorial dog like he was. Even then I still waited weeks before actually bringing him in. Do you know what an oxy moron it is for me to take the life of another living being when we have fought so hard to save life?
I held him in my arms as he took his last breathe and all the strength I had in me left with is spirit. I couldn't stop the wave of emoion that hit me at that moment. I couldn't stop the heavy sobs, the tears. The poor vet just stood there not quite knowing what to do or say. He is very familiar with me and my family as I have done alot of animal rescue and he has helped me patch up quite a few animals to be adopted, so the irony of the situation was not lost on him at all. I think it made it all that much worse.The kids where very upset ,of course, when I told them what had been done and why. They seemed to understand, probably better than I did.
Our 3 remaining dogs mourned his loss but I did not realise just how much until the 9th when Donny came in to tell me that my dog, Maddy's dog, Beufford was dead. He appeared to have just curled up in a ball where Rosco used to sleep and died. He was not that old and not sick. He had been to the vet and was fine. How do I explain to my kids that he just died for no reason?!?!?!?
Beufford was a very special dog and more like a child than a pet. He was the gentlest dog I had ever met. You could do anything to him and he just didn't care. He used to sleep by the kids in thier rooms at night so if they got up and fussed and I didn't hear them he would come and wake me up. I have never had a dog as good as Beufford was. He would let the kids crawl all over him, he even let Maddy take food out of his mouth when he was eating. He just spit his mouthful out, let her examine all his teeth, his tongue, pull on his lips, and when she was done and left he would finish eating. Not very many dogs would be that gentle. He had a very kind soul. We had gotten him through Adopt A Pet right after we had moved to Mayville. Someone had brought him to the vet to be put to sleep because they just didn't want him, thank god the vet refused and we where called to go get him. I fell in love with him on the spot. He was a beautiful purebred coonhound. He was black and tan and needed to be loved. And I had so much love to give. I just couldn't believe someone would want to kill such a wonderful dog. We were just going to foster him as he was really to big to be a house dog, but he just never left. I couldn't let him go, and now he is gone and I don't understand why. My heart is breaking. The questions are reeling through my head. Did I miss something? Did he have cancer like Maddy and I missed the signs like I had with Maddy in the very beginning? Was he trying to tell me something and I just didn't listen to his ques? Did he just lay down and die over the loss of his friend? I wish I could afford an autopsy so I could have some answers but I can't afford any extra anything anymore.
The 2 dogs we have left Zahr and a Great Pyranees named Maggie have been laying by the house crying and wailing over the loss of thier companions. Maggie was in the kennel with them and Zahr was left out because of the aggression of Rosco. Now the kennel doors are open and she could come out but she lays in there and whines. It is just killing me.
Maddy has been crying for 2 days and now has a fever and a cough again. I got a book from Hospice that I am hoping it will help the kids say good bye.

Also in the last week Donny's step mom went in for heart bypass surgery and had a stroke during the operation. We ask for your prayers for her as she is being moved to a rehabilitation hospital where hopefully she will be able to regain her strength to get back home. Donny's sister's husband died last week just within minutes of her getting to him in the hospital and my aunt died at the young age 101 years old. To say the least this week has sucked.

I am feeling very drained and tired and the tears just keep coming. I must go for now. Plase send us your prayers and support.

March 13th,2005

Maddy has an ear infection and a UTI. She has had a low grade fever for the last few days and a cough that she just chokes on. Donovan also has the runny, goobery nose and phlegmy cough but his ears aren't red enough inside to bring him into the dr's yet. Soon I would expect.

Donny just left for a trip to Milwakee and then to Baltimore for some training for school. He should be home next weekend sometime. Always nice to have to deal with sick kids alone.

Continueing on with the dog saga, Maggie ran away Friday morning. My guess would be to look for Beufford and Rosco. She hasn't returned yet and no one has reported seeing her anywhere. Donny spent hours yesterday combing the countryside for her but with no luck. Trying to find a pure white dog in vast open fields of snow is like trying to find a needle in a haystack. Our poor old Zahr just doesn't know what to think. He keeps starring out accross the fields trying to see her but he is to old to go find her. He has been sleeping infront of the house door and refuses to go into the shop to eat or drink. I fear this will be his last year also. I do not know how much hope to have that Maggie will return or be found. I just can't take anymore of this. The kids of course think we should replace them all with puppies but I do not want another dog. Right now I just want to go to bed and forget about all of this. So I think I will.

Saturday, March 5, 2005 3:20 PM CST

I am reminded today how very lucky we are to be at home, complaining about the bills, the weather-actually today is absolutely gorgeous! Clear blue skies, 45 degrees above zero-no wind-just awesome- the duldrum of our life. Today I am brought out of myself for awhile and see all the families who are still struggling with the daily fight for life, dealing with relapse, dealing with that constant hell. We have the luxury now of being able to forget for awhile that cancer was consuming our lives on a daily basis. Maddy, other than looking like she has had a really bad hair cut, looks healthy and normal. Gone is the feeding tube in her nose, the black circles under her eyes, the bald head, the cancer. We no longer have to schedule our lives around chemo or expected fever days. We are only having to visit the dr every 3 months for scans or when the flu has infected us. She gets to go to school and run, dance, play, and color with all the other kids. She has no limitations, no physical disabilities that are evident to the eye. We are so very, very lucky. Thank you God. Everyday has been a gift and yet we don't always see it that way. I have tunnel vision most of the time. I live day by day just praying and pleading with God that we make it through the next 3 months with no sign of relapse and clear scans to come. It took me such a long time to recover just from the scare of a possible relapse last October, yet so many parents actually have to face the hell of it. So many of the kids we have come to know and love in this caring bridge world are still fighting every day for their lives, still facing the pokes, the side effects, the scary surgeries. You are all my heroes, and we are so very lucky. Maddy will have scans again on April 5th and that will mark her 1st anniversary of being in remission. We are going to make it to that milestone and I never dreamt it would come true for us. I can't even begin to describe how happy and anxious I am about that day. It will be here before we realise it.

There is so much happening this month that I won't have much time at all to sit down and worry about it. My grandparents birthdays are coming up along with Donovan turning 7 years old on April 2nd!!! He is so totally pumped. There is St.Patty's day-I am german and irish-let me tell you that is not a very good combination!- Spring break, lots of appts ,ballet lessons-her first recital is the end of April!!- and then Easter sneaks in on us on the 27th. There is just something so unnatural about Easter in March. So much going on all the time-AND WE ARE SOOOO VERY LUCKY! So fortunate to have a schedule again of our own chosing, so lucky to be home to celebrate the upcoming special events with our family and not having to worry about low counts, in patient chemos, fevers, does anyone have the flu that we can't be around.

My love and prayers go out to so many children but today I will ask for prayers for a few.
To Lance and his family-please pray that they can diagnose and find treatment for the reaoccuring brain cancer that he has been battling since the summer of 2003.
For Cristopher in WI who is as tough and handsome as they come. He is at home now waiting for count recovery before his stem cell transplant in a few weeks. Please pray for strength for him and his family and that his protocol works so his mom can be journaling a year from now saying the same thing I am. We are so lucky to be cancer free!
To Julianna Banana's family that they continue to find strength from one another so that they can continue to fight the marathon that luekemia is for a child.
For Kody Bear who just never gives up and keeps bouncing back even though his cancer is fighting him hard. You are an awesome kid kody.

My precious little princess has just fallen asleep on the floor next to my desk so I must go and pick her up, hold her close, smell the essence ofher, kiss her cheeks and knowing me, cry a few tears of complete and utter joy at the fact that she is still here for me to love and hold.

PS-Please leave a message in the guestbook if you stop by. I draw alot of comfort and strength from the messages so please don't stop leaving them!

God Bless You All.

Saturday, February 26, 2005 6:03 PM CST

I think we have all finally gotten over the flu here. The kids have quit coughing and are back to having thier little people attitudes. Gotta love it. Maddy and Donovan have been bugging me lately to make it spring so they can ride thier bikes and go swimming. I am not ready for spring yet as that means rain and mud, warm weather and the start of the mosquito season. I am really praying hard for a drought this year so we can have some natural mosquito control without having to worry about chemicals. The farmers I'm sure won't appreciate my efforts but then again they all lost their crops up here to the never ending rain so it really wouldn't matter either way!

Donny has been working hard on his schol work and is really looking forward to spring break. The kids don't get a spring break so for us it will be the same old routine. He took 18 credits this semester and is feeling the strain. Next fall he will only need to take 9 credits so that will almost seem like a vacation for him!

I have been working about 2 days a week with Hospice and I have to say that there are somedays that my job comes a little to close to the pain of my personal life. Somedays I just have to step back and regroup. It's going to be awhile before that pain diminishes. I have heard the words your daughter is cancer free, now I need to hear the words your daughter is cured-see you in a year. I think when that happens the real healing will begin. I remember a student telling us at Mayo that Maddy would be cured and in kindergarten before we know it. Well she will start kindergarten in the fall but it will be 4 more years until she is officially cured and even that doesn't mean she can't relapse. I think that student needs some more basic math skills. She will be cured when she starts the 4th grade. I can't even imagine that far out. She will be 9, and probably have a boyfriend or two. She's already picking out the prospects now!

Maddy will be performing in her first ballet recital n April and she is so excited. I really can't wait. I hope she has enough hair by then to curl or do something with. Right now it is coming in in a hundred different layers and is looks like a badly hacked little boys haircut. To have patients is a virtue. I am lacking that virtue right now. All the little girls in her class come in with thier cute little curly ponytails and Maddy likes like the mad hatter. Oh well.

Other than that we have all been trudging along. The weather up her can't decide which way it wants to go so one day it will be 40 degrees above zero and the next day it is literally -10 degrees below zero. My arthritis just can't handle such and extreme in the temperature. It makes everyone tired and achy. Maddy has been having alot of growing pains lately and headaches. That always worries me though I know a relapse would be in her lungs not in her head or legs. I just hope these side effects start to fade away soon. I hate to see her in any kind of pain and it seems when the pain comes on it is intense. If I could only take her place.

Well the laundry is calling me so I should go and get something done today. Maddy is trying to talk Donny into painting the house pink this summer. My brother has a purple house so why not?! Donny is so not going for it, but we will see!

Thursday, February 10, 2005 1:24 PM CST

Once again my memory has failed me and I forgot how quickly a few hours worth of journaling can disappear with the click of a mouse! As Charlie Brown would put it,�AAAAAARRRRRRRGGGGGGGGHHHHHHHHH!!!!!!! Todays update will not be as long or as detailed as the one yesterday but then again that may just be a good thing. It�s been a long week.

I have been feeling run down for awhile, but not with any particular illness symptoms. My kids on the other hand my kids have been textbook cases for this nasty upper respiratory illness that keeps going around and around. Maddy on Friday started to cough and complained of a headache. I could tell you that night with 100ccuracy that she was going to have a temp on Sunday over 101.5. Saturday both of the kids were just �off� all day. I kept Maddy home from ballet and her and Donovan just laid around most of the day. Saturday night Donovan was up screaming that his ear hurt and sure enough he had a raging ear infection. I took him into the ER Sunday am and got him on some antibiotics. We no sooner got home from the long morning waiting in the ER when Maddy�s temp started going up and she really started to cough. She was at 102.3 that night when she went to bed. Monday after an appt with the dr myself I took Maddy in as she was at 103.5 and not budging. I was told I had a very sick little girl on my hands with a stubborn fever and a nasty bug. Shocker. I was just a little worn out and not in the mood to be at the dr�s any more after sitting for over an hour in a packed waiting room full of snotty, goobery, coughing, kids with scarlet red cheeks. All the while trying to keep the not little enough mask over Maddy�s face yet trying to leave enough room open on the bottom incase she needed the puke bucket I was carrying for her, left me a little bit crabby.
There is nothing like driving down interstate and hearing from the back seat a little voice saying,� Mommy, I think I�m going to be sick-now!� How many options do you really have at that moment?
We finally get to the clinic and there are kids everywhere, I looked at the clock and just wanted to cry. By know I am definitely feeling the flu raging through my body and just so wanted to be home in bed. As we sat and waited, reinforcements were called in to help with the never ending flow of children coming in. I felt sorry for Maddy�s pediatrician who up until that point had been working alone.
I felt like I needed a shower and a change of clothes after sitting next to several kids who�s parents didn�t seem to care if their toddler was going from knee to knee, hacking and spewing germs all over the rest of us trapped and helpless patients, all the while their kids� mask dangling from their fingers as they chatted away about who�s playing who in basketball and have you been to that new restaurant in town! Double AAAAARRRRRRGGGGGGHHHHHH!!!!!!!!!! I hate parents like that!
Maddy and I both were suffering from a bit of post traumatic stress that night after her pediatrician wanted to recheck and measure that scar tissue mass over her gortex that gave us all such a scare in October. When he did that I started to feel the color drain from my face and I became light headed. Maddy started whispering ,�Please don�t make me go back to the hospital and have all those pokes again, pleeeaaaaase!� tears silently rolling down her cheeks. It was all a little too much for the both of us. I can understand his wanting to keep an eye on it and note any changes but it was such bad timing. I told him she had just had scans and she was fine but his insisting scared the hell out of me. It didn�t help that outside our room where x-rays of a small child with what I am hoping for them was a case of pneumonia as the left lung was white. Maddy saw the x-rays right away and wanted to know why the dr had her pictures and why was the lung all white?! You could see the fear in her eyes. I reassured her we hadn�t had any x-rays done that day and she seemed to settle down, but her pediatrician scared her again by wanting to check out her back. That�s really the first time Maddy has ever shown any fear of her cancer. She is starting to remember a lot more about when she was in treatment and is talking a little bit about it. Donny and I don�t talk about our fears or our personal struggles in front of her or Donovan so this is just coming out on it�s own. I swear our therapist will be able to travel around the world-twice- by the time she is done with our family.

So needless to say, we are not �Walking on the Capitol� today and that is very disappointing. Maddy is so mad that she had to go and get sick when she had �plans�! Maybe next year we will make it. I myself am still to sick to have gone down alone and with both the kids hacking away with noses packed full of the nasty greens, well I just couldn�t leave them now could I? I tell you what, there is nothing worse than holding a puke bucket for your child when you need one at that moment for yourself! I am not sure if we will even make it to the Dance A Thon on Saturday for the Childrens Miracle Network or the Walk for Wishes for Make A Wish on Sunday. I am hoping we will all be on the mend by then. Maddy�s fever is gone today but they both still have a cough and plugged noses. I think Donovan might go to school tomorrow but I will keep Maddy out until Monday.

So much for keeping this short and undetailed. That just wouldn�t be me now would it? I read a quote on Julianna Banana�s site yesterday that really has had me pondering. The quote goes,� A person lives the entirety of their lives within the confines of their brain.� I can�t remember who said that but I can tell you this, I want out of mine. I need a brake from my mind, the worries, the self doubt, everything. But where can you go to escape your own mind? If anyone knows the answer to that than please let me know!

Well I had better go and do something. The only thing I have accomplished since last Friday is to do a few loads of laundry and keep up (barely) with the dishes. Being sick just really sucks. Today I feel alittle better so I feel as if I should accomplish something more monumental, like maybe putting away the clothes that I washed. Or maybe I should just take a nap. I vote for nap!

Pray that we all recover from this nasty bug we have all had and that we make it to atleast one of our planned events this weekend. You are all in our thoughts and prayers-God Bless.

PS-Thank you for everyone that has sent the kids cards and mail, it really means so much to them.

PSS- New pictures in the photo album!

Friday, February 4, 2005 9:05 AM CST

I have finally gotten some time to sit down and update, unfortunately it is only because I feel like crap and have been resigned to bed for today. No one likes it when mom doesn't function so everyone is telling me to rest. It's not that I can even identify the illness yet that I feel is trying to take over my body, I just feel awful but in no particular way. I can feel it coming and wish it would hit me now so I can be recovered by next week and all our activities. I just had a phone call to remind me that I have to give a speech at the dance a thon for the Childrens Miracle Network. Like I could forget. I am procrastinating and have yet to even attempt to write it. Oh well.

The night before last I was giving Maddy her bath and afterwards I lotion her well as her excema is acting up. She was laying across my lap as I rubbed lotion on her back and when she moved the fat in her back or the muscles must have bunched up as there was a lump just to the right of her spine in the middle of her back. As I stared at her I could feel ice running down my spine and through my veins. The room started to spin and I felt as if I could have fainted. I don't know if it was because I had found her tumor during bathtime at night and the whole situation put me into post traumatic stress or if I am just that worn down still, but my heart skipped a few beats and I felt as if I could have puked. Donny just kept saying she just had scans, she's fine, and my brain was saying the same thing, but my heart was racing and my body went right back to when she was diagnosed. The threat of relapse is never going to be a distant thought lost in my memory. It is always going to be there, lurking around my daily thoughts, creeping in and out during the monotonous times of my day, springing forward at moments when I am the least prepared to handle them. This is something that I hope may get to be less as time goes on and we get farther away from the freshness of the memory. But I do not believe at all that it will ever be gone totally. Anyone who would dare to suggest that it could be put out of your mind if you tried hard enough is crazier than I feel. The process of healing after such an experience is so very long and frustrating. You so desperately want to forget everything that happened, move on without any ill effects to your life, your soul, your very being. But in reality you can move on to a point but you can never be who you were before, you have lost an innocence that can never be regained. You don't have total control over rational thought anymore either. The amount of fear that you experience during the long treatment leaves you so very unsettled and not able to trust your own instincts anymore. Trusting anything at all is a major challenge. We have good stretches were we almost dare to dream, make plans for the future, and then something will happen-either a major event or even something quite insignificant- and we are right back to surviving the day and afraid to think of what are future might hold. I know that some people might say to get some therapy and get over it already and I will share with you all now that we all are in therapy and it isn't something that you just get over. Every person heals at thier own pace in thier own way. This is how I am feeling and how I am processing all of this. I feel this stigma that the general community doesn't understand why now that treatment is done that we haven't just totally jumped back into everything and why things aren't back to normal. Physically we are still exhausted-let me specify that we in this instance is Donny and I, the kids are not lacking for energy!- mentally taxed and emotionally stressed. We can't seem to find our feet either financially our in stability. That is frustrating too. Maybe I am being to impatient and by trying to speed the healing process am actually setting myself up to crumble later on and have to start over. I don't know.

I recieved a letter from my dr on the MRI results of my knee and the actual wording of the letter is as follows." I am so very pleased to inform you that the MRI you had done of your left knee on 1-28-2005 shows degeneration of the patella or knee cap only!" Am I supposed to be happy about this? The I am so very pleased part of the letter really threw me off. I thought they were writing to tell me that there was nothing wrong. I will never quite figure out dr's.

Donovan lost another tooth the other day. Well it was pulled out, not just lost. It has been loose for awhile but I just don't do teeth very well. He would tie dental floss around his tooth and then come to me and ask me to pull it. Well I would give it a little pull and he would scream and I would just about puke so finally we had dad do the honors and I stood out in the garage so I couldn't hear him screaming. Now if my mother loved us at all the next time her poor grandson had a loose tooth she would come up here and save him and the family from all the trauma of having to pull it causes! When Donny was done pulling Donovans tooth and he saw the blood he just went white! I can handle most anything as long as it doesn't have to do with the mouth. I could never be a dentist that's for sure. They may charge an exorbitant amount of money for your visits but I think if you find a good one they are worth thier weight in gold.

Well next week will be so very busy and I really need to rest if I am going to be able to avoid getting really sick. My thoughts and prayers are with you all. Thank you so much for your continued love and support.

Sunday, January 23, 2005 10:24 PM CST

Has it been a week already since our Princess left her childhood year of 4 behind her? Has she turned her back on it, never to return?! You betcha! And we couldn�t be happier. Well for a few moments we were very unhappy when we discovered that turning 5 did not entitle her to automatically be fast forwarded into a kindergarten class like now, and was definitely not happy to have to go back and face all of her fellow pre-schoolers on Wednesday after saying her farewells to them all on Tuesday! What a kid. The injustice of it all. How can we possibly expect this poor child to go through the rest of this school year as a mere preschooler when she is now 5 and should be mingling with the upper crust of the kindergarten social scene?! What is a mother to do?! RUB IT IN OF COURSE! Hey I never said I was nice. The drama of it all was just to much for me to resist, so I had to play along and make her believe she had a whole other year of pre-school to go, that dad and I decided that she should wait until she was atleast 6 if not 7 before letting her go into such an important class as kindergarten. I am evil aren�t I?!?!? I had to quit when the water works came out full force and by golly I was starting to wander if the damn was going to burst. Why are kids so eager to grow up? I can remember being a kid and dreaming and wishing and praying to be big, to be a grown up, and for what?!- to work until I�m to tired to think, to pay taxes and way to many bills, to never have enough time, energy, or money left to go out and have fun with?! I wasted my childhood dreaming of being something that is so not-fun. What I wouldn�t give to go back to a time when I didn�t care what other�s thought, to a time when acting silly and doing what I felt like was all there was to life, to a time when you just took off your shoes and ran into the water without first stopping to think if there was anyone around watching that might think it foolish, or stopping to look for sharp objects that might cut your feet or worrying about how far you ran in so as not to get all wet and dirty. Do you remember rolling around in the mud? The shear bliss of it? The feeling of the cool wet slimy dirt on your skin, the smell of earth in your nose, the absence of any thought that maybe you shouldn�t? Now, as an adult if I want to play in the mud and not be subjected to ridicule or a padded room, I must pay hundreds of dollars to a �Spa� to have someone else smear the mud on me. It�s all right if someone else does it for you-just don�t do it yourself! How much sense does being a grown up make, and yet that is what my poor dear child wants to be. A grown up. Someday, way to soon, it will happen, but for now I want her to be my little girl. She has issues with the word �little�.

Well, back to the big 5 year old and her day (or should I say days) of glory. Her birthday party on Sunday was a huge success. She was so happy to see Emily, Anne, and their folks along with Becky, her cousins, aunt and uncle, grandparents, great grandma, and her Auntie Pam, uncle Rick and their boys. What a great afternoon. We went to Chuck E. Cheese, which for those few of you out there reading this with no children or grand children, is a loud and obnoxious pizza joint with tons of games, rides, noise and entertainment - all for the price of a small used car, but when you are turning 5 and there was a time when 4 almost seemed like a dream, well a trip to the moon would have been afforded if that was the chosen destination. The food is good and the company couldn�t have been any better. Maddy was on cloud 9 all day. I have to admit I didn�t want the party to end and all our friends and family to leave either. Donny and I had planned to go out for our anniversary afterwards but decided to go home early and spend the evening in the unusual quiet of our house. Of course we spent the rest of the night talking about the kids and what a great time we had that day. On Tuesday- the actual day of birth- I brought cupcakes and party hats to her pre-school and we had a little afternoon mini-party for all her friends at school. She was just too thrilled. It was fun, although the miniature furniture doesn�t quite fit the very grown up bum!

I suppose I should go and get the kids bags ready for school tomorrow. I can�t believe it is Monday already. Our weeks seem to fill up so fast. The next few are really packed. I thought things were suppose to slow down after the new year?!?! We are going to take Maddy to Bismarck for a Walk on The Capital to talk to senators and representatives at the state legislative assembly about cancer issues and funding for research and programs in ND, then the day after we get back we have a 12 hour dance a thon at UND for the children�s miracle network. I have to give a speech and Maddy will of course entertain with her usual impromptu singing and dancing. If that wasn�t enough then the next day we have the Make a Wish Walk for wishes which Maddy is a featured guest. I�m tired just thinking of it all, but all very worthy causes. The American Cancer Society, The Childrens Miracle Network and the Make A Wish foundation have all meant so much to us for different reasons. Anything I can do to help I will gladly do. Even if I do have to make another speech!

Ours prayers are with you all, God Bless and good night!

Friday, January 14, 2005 11:15 AM CST

BRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It is so cold!!!!!! This weather is just the worst. It��s like -40 degrees today with little improvement forecasted. Did you know that when it gets this cold it can��t snow? A little tidbit I learned from the morning news. I think I would rather have snow!

Well Donovan had a little stomach bug this week and spent Tuesday night and most of Wednesday puking. The poor kid. When he gets sick he gets very sick. Luckily no one else is feeling ill-yet. Always need to be optimistic! I am just hoping and praying that we all stay well now so Maddy can have her birthday party on Sunday. She is so looking forward to that. Both of the kids are. Well actually I am too! I can��t wait to get to see all our family and friends again. It is so hard to believe she is going to be 5 years old already. It seems like just yesterday she was still a baby, pudgy little cheeks, long golden blonde hair, a sucky in her mouth and one in each hand! It feels like we lost an entire year of her life. She was a happy carefree little toddler and now she is a very grown up little girl that��s going to school and sprouting out of all her clothes! She has grown 7cm since October and I went through her dresser and closet the other day and pulled out almost 4 big garbage bags full of clothes that just don��t fit anymore! Yesterday Donovan and I went to town for an appt for him and stopped at JCPenneys. They were having 70% off all their clearanced clothes so I was able to get Maddy some new size 4T and 5T outfits for next to nothing. Gotta love that. I also got Donovan some outfits for school next year and their winter coats and snowpants for next year for only about $6.00 each. Can��t beat that price. Every once in awhile I hit the stores at the right time and get some really awesome deals. Today I am feeling the pain of walking around the stores carrying all that stuff though. Penneys really needs to get shopping carts! With this cold weather I get so stiff and sore anyway so there really is nothing I can do. Right now I am procrastinating as I know I need to carry all that stuff downstairs and put it away in the plastic totes. I think I will take some more motrin and drink another cup of coffee before I try and do that!

Maddy got to stay home from school on Wednesday when Donovan was sick. It really did not make sense to me to bundle him up and put him in the car with a bucket just to take Maddy to pre-school. The selfish mom part of that is I really did not want to be stuck out in the garage in -30degree weather trying to scrap freezing puke off my car seats if Donovan so happened to miss the bucket! I��m such a good mom! So anyway, Maddy got up this morning and told me she had decided to take the day off from pre-school because on Wednesday she had realized that all of her favorite cartoons are on during the day while she is at school! You gotta give the kid credit for trying! I told her that there was no school tomorrow and she could watch all the cartoons she wanted. Only after I said it did my very delinquent brain realize that she starts ballet again tomorrow so she will miss all the cartoons anyway. I think I will just keep that to myself for now. ��

Well Donny started back to college on Monday with a class load of 18 credits. The man is truly insane. I don��t know why he pushes himself so hard. Hopefully, even with this heavy class load he will be able to make time for the kids so they don��t feel left out of his life like last semester. It is very hard to do and I can understand that but the kids don��t always.

I did talk to the oncologists office today and all of Maddy��s blood work came out as expected. No new surprises-Thank God. So now it is to take steps to change our diet and make sure she never misses her vitamins. I can deal with that. We all need to eat more fruits and vegetables anyway. Well my coffee is gone and I really need to motivate today. I wish you all good health and warmth! Keep praying and send Maddy your birthday wishes her way! She��s almost 5!!!!!!!! What a miracle!!!!!!

Sunday, January 9, 2005 4:10 PM CST

I think I am ready to journal now, I have my bag of chocolate covered raisins-raisins are good for you ya know-and my water, milk would fill me up to quick and then I wouldn�t be able to eat as many raisins! I deserve a little indulgence after this week.

First off Maddy had her 9 month scans on Wednesday. The good news is she is still CANCER FREE!!!!!!!!!!!!! The bad news is she had abnormal urine tests and we were told on Wednesday that she was a diabetic, but we would need more tests. So we made an appt for Thursday and went home. Diabetes is a very serious disease that in a body already compromised could lead to heart failure, blindness, amputation of limbs, serious infections and god forbid if she were ever to relapse what the infection risks would be. Now this is all going through my head at the speed of light all at the same time. I hate that. My mind in hyper-drive as I am trying to choke down the huge lump in my throat from fielding yet another blow. Hold on��
I just lost my chocolate covered raisins to a very cute but very sneaky almost 5 year old! A bottle of water really isn�t what I had in mind for my Sunday afternoon indulgence-oh well.
So anyway I am trying to focus as I run through all the worst case scenarios in my head. I am really working on my optimism I swear! � Now the funny part about this is that in December I had come to the conclusion that we as a family consume way to much sugar and since cancer thrives on sugar it wouldn�t hurt to try a diabetic diet (I don�t believe in using artificial sweeteners of any kind-yes that includes Splenda too!- so we are going to cut out most of our sugar without killing ourselves with chemical replacements) and try to get ourselves as healthy as possible, so the meal part wasn�t bothering me it was all the other stuff. It seemed all too coincidental.

After almost no sleep Wednesday night, we went in bright and early and nearly frozen on Thursday morning! Did you all realize it was -37 degrees on Thursday morning-that was the actual temp without wind chill! Brrrrrrrrr! Sometimes I really wonder why in the H E double hockey sticks that I live up here in this deep freeze!- It turns out Maddy isn�t diabetic but she has kidney damage from the Ifosfomide she received during treatment. Her kidneys cannot hold the fluids that pass through them so they are leaking glucose and magnesium into her urine. There is no cure for this and hopefully it will not worsen. The only thing we can due is make sure she has a good diet and never misses her vitamins. Best case scenario is she grows out of it, worst case is she would need a kidney transplant later on. We were up at the clinic for 3 days testing and hopefully we should know tomorrow how bad the damage is and what other tests we need to do at this time if any. What she has is called Fanconi Syndrome. Her onc. kept saying,� Just don�t freak out Holly,� and I was so surprised that I wasn�t. I can handle this. I can�t handle very much at all right now and I really mean that �but this I can handle. It�s not cancer. See that was a positive thought!

Maddy really did an awesome job this week and never even cried a single tear any of the times she had to get poked. So amazing. I was very thrilled to hear from her onc that Maddy has matured beautifully and is definitely NOT THE CANCER FREE BRAT CHILD that we were told so much about. She is very sweet and polite and other than having typical pre-K type behaviors she is doing wonderful. Her onc seemed very surprised at this. Maddy was given so many gifts and the dr.�s assumed we catered to her every whim. They had told us a year ago that we were in for trouble but I tried to tell them that just because your child gets lots of gifts doesn�t mean they will turn out to be spoiled brats. I have always tried to keep my kids very grounded and appreciative for what they have and I was just so happy to hear that it was really worth the battles!

Well I am out of time and I haven�t even gotten to our holidays and all that great stuff but I will have to try and fill you all in on that later this week. Maddy turns 5 on the 18th and I just can�t even believe that we are almost a year out of treatment. What a feeling.

Our love to you all and keep praying!

Friday, December 24, 2004 8:29 AM CST

Well I am going to try and do this a different way. I spent almost 2 hours updating Maddy�s journal yesterday and my computer was kicked offline and I lost it all. I am getting so frustrated with this. So today I am going to attempt to write this in Word and then copy and paste it to Maddy�s journal. Wish me luck.

Well we finally figured out our water problem. The pipe from the sump pump out to our drain field outside first runs through a crawl space under our den. Evidently, when our sump pump burned up in October and Donny replaced it, that pipe came apart and has been pumping the water down the outside of our basement and back into the house through the foundation. We have pretty much been pumping out the same water for 2 months! AARRRGGGGHHHHHHHHHHHHHHHHH! Gotta love it. On the bright side-yes I am on occasion able to look on the bright side!- it didn�t cost us anything to fix and it didn�t involve tearing up our yard to drain tile the house, which only costs about $5-7000.00. Now that the water has dried up maybe I can get down there and get some of the junk cleared out. Donny hopes-one has to has dreams don�t they?!

Well it has been a long time since I last updated, not just because I have been busy , but because I don�t feel at such a joyous time as Christmas that I should be unloading unto all of you my emotional baggage. Like mother always said,� If you can�t say something nice than don�t say anything at all.� Aren�t you so proud of me mom?-it only took 30 some years but I�m finally listening to you!!!! Now after the holidays it�s free game time again, but on Christmas Eve I will keep it light.

We are all just waking up and we have no big plans for the day. Open family gifts, go to church, pick up some milk. That�s about it for scheduled activities. I had the kids pick up last night and Donny has been catching up on the laundry so there is nothing that needs to be cleaned, nothing that has to be done, nothing but time for us this weekend. The kids are beyond excited and I so much enjoy watching their faces light up when they open a gift. I want to say thank you to Hugs an Hope and their elves that help make so many childrens Christmas extra special. Your elves I believe are actually angels in disguise! Thank you again for all of your support. The kids absolutely love the mail they get.

After the holidays or lives will hit fast forward again and I need this time to really rejuvenate. Maddy will have scans the 5th of January and then it is our anniversary-can you believe it has been 10 years now of dragging this ball and chain?!?!?- I still love you babe-and then it is appt after appt and before you know it - Maddy�s big 5th birthday!!!!! I just can�t believe she is going to be 5 in less than a month. There wasn�t so much hope last year that she would turn 4 and now she is almost 5! What a miracle she is. So full of life and love. So beautiful. I am a little biased there you know! I think she is going to go with a Barbie theme-no wait she says now Bratz dolls-no, no, wait -princess�. No Barbies, or maybe Strawberry Shortcake- have I had Care Bears yet? I don�t know just pick something!!!!! Well maybe Barbies would be OK although I have already had a Barbie birthday you know!?!? Anyone got some Excedrin Migraine?!? What I should do is use up all the leftover stuff from her previous parties and just have it be hodge- podge. I like that idea-cheaper too. Now to get Maddy to agree.

Well I suppose I should go and have some breakfast with the princess of the house as my little prince sleeps in. I won�t update again until after the holidays so we are all wishing you the very best Christmas ever. Remember the true meaning of Christmas and say thank you for the birth of baby Jesus. Maddy will be singing him happy birthday tomorrow! Please stay safe over the New Year as you celebrate all the promise of 2005 with your family and friends. We love you all and thank you from the bottom of our hearts for your continued support and prayers. God Bless You and Merry Christmas!!!

PS-Emily we are so very proud of how far you have come since ending treatment with Maddy. When I read about you going back to playing Hockey- yes tiny, sweet you playing Hockey-I cried tears of joy for how strong and determined you are. Way to go Emily!!!!!!! We think of you and your family everyday. Merry Christmas! We will see you soon!

Thursday, December 9, 2004 3:52 PM CST

I had spent most of the morning updating Maddy's website and of course I bumped something and it was all gone. You would think with all the times that has happenend that I would learn to write my journals somewhere else and then copy them over. Someday I will learn how to do that. I had started my last entry talking about my contempt for computers and how fickle they can be. Mine only works when it feels the urge to do so and had decided to lock me out all day on Monday. Gotta love it.

We still, yes, still have water in the basement but at least the furnace has been fixed. No cheap feat there but a necessary one. I have been very slowly getting ready for the holidays. My family isn't getting together until the 30th so there is no rush. I am actually looking forward to the holidays this year. No busy schedule of activities to have to hurry off to, mountains of food to make or a house to try-and fail-at keeping spotless for company. It will just be the 4 of us to do what we want as the spirit of the season moves us. The kids are getting sleds so we are planning on going sledding on christmas but other than that no plans.
I have been working on my christmas letter today to get out with the pictures of the kids and as I was writing I thought back to where we were at this time last year. Up at the hospital caught up in chemo world, worried that Maddy wasn't going to make it through her treatments. She was so sick, so fragile and yet so full of life. Last year the holidays were bittersweet. We didn't know if it would be our last as a whole family. Now this year that immediate fear has been replaced with a dull nagging in the back of my mind that nothing is a for sure thing and anything can happen. I am facing the New Year with more hope than I had last year. Hope that Maddy will stay in remission, hope that we will continue to heal and move forward, hope that we see the silver lining in the clouds that have surrounded us this last year. I am feeling more optimistic and a bit more at ease. I am trying not to think to much of Maddy's scans coming up on January 5th. Actually it is only once in awhile that the thought comes into my mind as even though I am trying to take things slowly it always seems that our life is so busy that I usually don't have time to think of much. Today for me though, has been a day of reminissing. I have been thinking back over the past christmas's I have had. The ones as a child, my first christmas with Donny, the first ones for Maddy and Donovan. Many have been good, some better than others, but one sticks out in my mind. Two years ago for christmas Donny and I had decided to take all of the kids-we had 3 foster kids at the time-and go to a local tree farm to pick out a tree to cut down and haul home ourselves. We spent hours out in the snow and cold trying to find the perfect tree and disagreeing on each others views of perfect. It finally got dark so we ended up taking the closest one and home we went. Now this wasn't a nice, pretty tree that you can pick up in almost any retailers parking lot this time of year,it was crooked and mishapen with bare spots big enough to fit a small child through and the needles were so hard and sharp they drew blood everytime you tried to water it. It stood like a centurian in our living room guarding all the gifts around it. Believe me none of the kids dared get to close to it for fear of being impaled by those needles. But it was also so pure and naturual, beautiful in it's imperfection. It was the type of tree one would expect to have seen when baby Jesus was born. No hybrid, commercialized evergreen then. Just a natural wonder of nature, with it's branches reaching for the heavens as it was twisted and shaped through it's life as it weathered many storms. I now have a fake white tree that stands so elegantly in my living room corner, soft and glowing in it's coordinating decorations of gold and red. But it will never be as beautiful as that tree we all trudged through the snow and cold to pick out and then sacrificed our fingertips to decorate in a hodge podge of goddy tinsels and multi colored balls. Someday I hope we can do that again. We had made the decision to go with a fake tree last year and this to protect Maddy from the mold spores that live trees carry and then release into the air as they die in our homes over the holidays-nice thought isn't it?! A fake tree is nice but it's just not the same. I also think fondly of that christmas as the house was so full, kids and dogs everywhere. You couldn't turn around with out tripping over one of them. But now the dogs are all outside and the 3 foster kids are gone and our to small house now seems so big. I miss them. I miss that time, that life. I am still working on finding balance. I have a feeling it will be a long slow process for me, but one I will continue to work hard at.

Well it is almost supper time and I had started the day working on Maddy's journal so I think it is time to go and get some feeling back into my butt. I hope everyone is doing well and enjoying the holidays so far. In our commercialized world of wants over needs, try and keep in your hearts the true reason for this holiday season. God Bless and Good Night!

Friday, December 3, 2004 12:03 AM CST

Well Donny went to the dr today and they are just going to monitor him over the next week or so until he goes in for his complete physical. The dr thinks it is from to much stress and caffeine. Personally I think to much gets blamed on stress and not enough dr's take our complaints seriously until something drastic happens. Donny has just been feeling ill lately and I wonder if all the years he took Vioxx may not have caused some damage, not to mention heart disease runs in his family. I guess all we can do is see how he feels over the next week and go back in for the physical.

I was going through my date book and Maddy's 9 month scans are coming up the first week of January. It's hard to beleive that we are almost 3/4 of a year out from treatment. I can't say that the thought doesn't make me nervous. The first year staying cancer free is so critical and the first 2 years are the most likely for her to relapse. I am staying positive in my mind about it but my heart skips a beat at the thought of something showing up on the scans. She looks good and is acting well. But she looked well and acted normal when she was diagnosed too. She gets headaches and has been having growing pains lately. It's hard not to panic when she wakes you up crying in the middle of the night because she is in pain. Donovan has been having alot of growing pains lately and is now right between a size 5 and a 6. He lost his first tooth last week and now he looks so different with that extra hole in his mouth and he is so lanky. He's entering into that awkward preteen goofy boy stage of life were everything gross is hillarious and his interests are becoming more defined. And he still likes girls, many of them. He plans on marrying a handful of differrent ones from his class but I think he would have to move to Utah to do that!

The kids can't wait until we get enough snow so they can go sledding. We had a few inches but not enough. It was really nice last week and I should have hung up all our christmas lights but I have been so horribly cold lately that I just couldn't bring myself to go outside for that long. This week it has only been up in the twenties and last night was so cold that the electric company rippled us off of our electric furnace to our propane one but the control board has gone out on it so we had no heat for most of the night last night. It got down around 60 in the house but the kids and I put on our warmest pj's and snuggled up under lots of blankets. Donny is trying to get someone out to fix it and I am sure that will be atleast a $500.00 bill. An electricain has to install it from the electric company because it is controlled by thier ripple box. It's always something. We still have water in the basement that is surrounding the furnace and that always makes working with electricity that much more interesting. Hopefully the guy will be wearing rubber boots! Water and electricity just is not a good combination.

Well I wrapped a few presents and put them under the tree yesterday and the kids totally freaked out when they got home from school thinking it was christmas now! Donovan cried when I told him none of them where for him or Maddy. Poor kid. I explained to him that I couldn't put out their presents yet because they would just mess with them and then I would have to take them back before they ever actually got them. This he understood. I know I am such a mean mom. And I would actually do it too and my kids realize that.

Well I better go and do something. I cleaned so much yesterday that my knee is out today so I have restricted my activities to clipping coupons, updating this site and channel surfing-which when you only have 4 channels doesn't take very long! Have a great weekend and I will be back again soon!

Wednesday, December 1, 2004 2:02 PM CST

The house is quiet and I have a few minutes to myself before I have to go pick up Maddy. This just never happens. Me-at home-alone- I could be cleaning or doing laundry but I just feel like reflecting on this holiday season.

Thanksgiving came and went and I spent so much time cleaning and preparing for it that I missed what it really meant. We were all still together as a family. My parents, my grandparents, my brother and his family, Maddy, Donovan,Donald and myself. It didn't matter if the napkins all matched or the house was spottless, or even how much food I had. But I missed that this year. So many things can get in the way of true enjoyment and to often we don't realise that until after the fact. I wanted to have everything just so and I don't quite understand why. My family did comment on how ellegant everything was and how beautiful the house looked and how delicious the mountains of food were, but I didn't get the satisfaction from it that I had expected. I think if we had eaten off of paper plates in the livingroom surrounded by the lived in caotic look that has become our norm that I would have been more happy. I worked so hard I was truly to tired to enjoy it. That saddens me.

So many things in our life have changed so much in the last few years and it really is hard to get a grip and move on. I told a friend the other day that coming off of chemo treatments and entering the world of remission was like being brought to the edge of a cliff and being pushed off with someone yelling down after you-"I hope everything works out!" You will either land softly on the bottom or hit every rocky ledge on the way down. Right now I am feeling a bit bruised from the rocks. Day to day funtionings are draining and the relationships you once had have all changed. Some you can meand and others you have to let go of and then there is the grief of your loss. Not just from the loss of your innocense but the loss of those relationships. It can be from family, friends, colleagues, groups, what have you. The constant change can be very draining. For most of us it is very hard to accept change and many resist it. I know I do. You may be able to teach an old dog new tricks but no one ever said the process would be easy or quick. I struggle not to fall back into my old habits and try to keep my priorities straight but somedays it is so very hard to find that balance. There is living healthy with out becoming a fanatic, there is budgeting without becoming a miser, there is living life but within your means and yet still enjoying life without waiting until you have more time and/or money. Somedays I feel as if I need to be duplicated just to keep up with everything going on. I can only hope that I find my balance before christmas so I don't spend the week after feeling as I do now. Everyday I think of how lucky I am to still have my family and yet my mood and my actions don't necessarily coincide with those feelings. I have been going through the various stages of grief and keep drifting from anger to saddeness. I have finally started letting the grief out with the passing of Donny's dad George. I was finally at a place where profound grief was totally acceptable and I mourned the loss of George along with the all the other losses we have experienced. I have always been able to express what I am feeling but I do not always process the emotions and tend to bottle everything back up in order to keep moving forward. I am now coming to the point where I need to deal with it and put it behind me, but I wasn't ready for how overwhelming it was all going to be. The anger of what my children have had to go through, the guilt, the grief, the saddness. I didn't think I had been holding so much in. It is going to be a long slow process I am afraid but something I must do now or I will never be able to move on. Thanksgiving was an eye opener as to how much I had missed the boat on the meaning of giving thanks. I don't want to make that mistake again. Last christmas Maddy was in the hospital having emergancy surgery and then had chemo until christmas eve. She was so tired and sick that she didn't even want to open presents. this year she is healthy and happy and Donovan is doing better. I need to stay focused on how far we have come, not on how hard the journey has been. I have wonderful insight and can give great advice just unfortunately I am not so good at applying it to my own life. Please send me your prayers of support and clarity so I can move on. thank you to everyone out there that still cares about us and continous to support us. All my love to you all.

As for the kids they are doing well. Maddy had her post-op appt. yesterday and the ENT Dr. said that she looked wonderful. Donovan has been well and they both are adding to their mile long christmas list daily. They are so excited for christmas. I am trying to hold on to the memories I had as a young child waiting for that special day. The big dinner, the church service at night,singing christmas carols, driving around town looking at all the lights on the houses,making cookies, being so excited for christmas morning that I couldn't hardly sleep for the week before. My favorite memory is getting up very early in the morning with my mom and sitting on her lap in the rocking chair watching the christmas lights blink in the dark livingroom. I want that for my kids.

Donny has been very stressed out lately as we both have and I noticed his heart started skipping a few beats and would race and then slow way down. Last night lying in bed almost asleep his blood pressure was 189/98. Very high so I got him an appt Friday am to see his dr and get that checked out. The last thing we need is for him to have a heart attack or a stroke. Needless to say I am a bit worried. Donny just puts on the air that it is nothing. I will let you know what the dr says on Friday.

God Bless you all and remember that I keep you all in my heart and in my prayers!

November 27, 2004 9:21 PM CST

I am switching over to msn and have a new e-mail address so please change it in your contacts books, it is haws_2@msn.com. I can still receive e-mails through polarcomm until the end of the year but can only send out through msn. I hate computers. The more you need them the less they want to work. Well Donny and I braved the crowds and went shopping yesterday. I used to love the day after christmas and the day after Thanksgiving shop a thon, but as I get older and more tired, I don't like to fight the crowds and wait in line forever for nothing really. We did get Donovan a bicycly at Walmart for $25 for his birthday in April since Donny ran over his on Thanksgiving and a beauty salon/vanity with chair for her birthday and that was about all we accomplished. Donny waited in line at Office Max to check out for an hour for 1 $10 item -not at all worth it-and after we braved Walmart we didn't have much energy for anything else. I used to think my kids needed all this stuff and now it's like they don't need that, they will break that right away, I don't want to be stepping on those. So it is hard to find anything for them. Plus being broke doesn't help. oh well.

We still have water in our basement. I am sure I am cursed with water. It has been over 5 weeks now and the moisture in the house is to much. We are going to have to somehow find a way to have our house drain tiled this year. There is mold growing on our window sills from the humidity. I have to wipe and bleach them everyday. I am so allergic to mold and it could be part of the reason why I am feeling so tired. Not to mention how bad that is for the kids. And with Donny's asthma, well we are all just sniffling and coughing here. I have started working very part time for Hospice. For those unfamiliar it is a program that offers extra TLC, family support and home care for those reaching their end of life. It has been a very positive and moving experience for me. I feel I have a small insight to the feelings and emotions that families go through when a loved one is very ill. We were told Maddy did not have a very good chance of living to christmas when down at Mayo for her diagnoses so I know the fear and the feelings the families are going through. There are babies on up to our golden generation on our services. It is a very good program that I have never heard a bad word about. And the best part is I only work during the week when the kids are in school and only a few days so there isn't all the added stress. Maddy can't get over the fact that mommy can work while she's at school so I am home at night. The kids are both duing much better. Donny is almost done with this first semester of school and next semester he will have all late am and afternoon classes instead of all this early morning get up at 5am so he can get to his first class stuff. He will be able to take the kids to school next semester so I can have a break from it and maybe get some better rest.
The kids are doing well and are so excited for christmas. Donovan lost is very first tooth yesterday and now today he has another loose one. He was at his grandmas when the tooth came out so I had to give her a hard time about knocking my kids teeth out! Doniovan thought I was serious and got all upset and started crying,"No mom, grandma just helped pull it out -she didn't knock it out! Don't be mad!" I had to reassure him I was just kidding. My mom had come up on Wednesday and we had gone to Maddy's school to eat cupcakes and play together as they were honoring grandparents. We then all went to the elementary school and ate lunch with Donovan,Austin,Alexis and a few others that managed to squeeze in with us. I then had 8 kids get off the bus after school to play as I tried to clean, cook and get ready for Thanksgiving. Did I ever mention that I was nuts!?!Well speaking of being nuts I have only had about 12 total hours of sleep in the last 4 days so I need to go to bed before I keel over. My love to you all! God Bless!

Well I had just spent an hour typing a new journal entry and as I went to scoop that last bite of pumpkin pie in my mouth I bumped the computer and erased it all. But the pie was worth it! Happy Thanksgiving to all. There are so many things in my life I am grateful for-I just spent an hour listing them all- But the main thing is that my family is all still together, healthy and living the day to day. Thank You God! I need to get going but I wanted to say how much everyone means to me and how thankful I am for all the family and friends we have that love and support us. May you count your blessings today, hold your family close and stuff yourself silly!!!

Be truly grateful this year for all you have. We love you! God Bless and Good Night!

Saturday, November 20, 2004 4:49 PM CST

I started this journal hours agao and yet have just not been able to get anywhere with it. My opening sentence had to do with dust bunnies that I thought was pretty cute, but since my brain only functions in spurts I am at a total loss as to what it was. Oh well. It had something to do with cleaning and that doesn't sound like any fun to me right now. I have been desperately trying to clean up my house as we are having Thanksgiving Dinner here on Thursday. If it weren't for the fact my grandma was coming I'm not sure I would care at all but there is just something about having your grandma come to your house that makes you feel the need to repaint and iron. Scary isn't it???So far I have done pretty well resisting the urges but then again I have been so tired I barely have the energy to get out of bed in the morning. Chronic fatigue and fibromyalgia are aggrevated by the change in barametric pressure caused by the changing of the season from warm to cold.I have felt so aweful the last few months I actually contemplated moving somewhere warmer. Like the bahamas- white sand beaches, clear blue ocean waves, the soft warm breeze blowing across your body as Juan the mute, 20 something cabana boy applies sun screen to your back and brings you an endless supply of ice cold drinks with little umbrellas in them. Your wish is his command. If only....

Yah I know, back to reality. I watched the Stepford wives the other day and Maddy wanted to watch it with me but I said no that it was an adult movie. "Why mom? Is it Scary?" I thought a moment and said,"Yes it is very scary Maddy, Totally obediant women is terrifying!" Her eyes got big and she nodded her head yes. "That's scary mom." You have to train them young you know. The movie was actually pretty good.

Maddy has had no complications at all from her surgery and has been her normal, ever questioning self. She had ballet today and I actually got to spend some time at home alone. That just never happens. I am not able to send e-mail or reply to e-mail right now and I may need to change my account. I can recieve e-mails I just can't do anything with them. If I change my e-mail address I will post it here on Maddy's site. I will know next week.

This message is for Emily. I am sooooooo happy to hear that the scans are all clear and things are good for you. You are on my mind and in my heart every single day. We need to schedule a date for us all to get together as Maddy has gifts for you. You can send me an e-mail and I will get back to you through Donny's account if I can or I will call. I miss you all and can't wait to see every one again. Tell Craig Maddy saw him on the news the other day and yelled," Mom I know him-that's Emily's dad! I miss him mom!" I hope school is going well and just know that there are so many people out here that love you and pray for you always! Talk to you soon Emily! Maddy says I love you Emily-You are in my heart!

I am looking forward to the holidays I just wish I had more energy to enjoy them right now. I don't know if any of you have had mono but it feels like that only your brain is so foggy all day you can hardly keep a thought, and every inch of your body is on strike. I want to do what I normally do for the holidays, make mountains of lefse, bake until I can't stand the site of cookies and cake-That usualy takes awhile! - Decorate every room in the house-I took my decorations out 2 weeks ago and it has taken me this long to put up maybe half of them. I did manage to get the tree up and decorated and a few things up around the house. I think that will probably be it for this year. Now I have to take all the totes back down to my still wet basement and put them away. I don't have the energy for that either. This basement thing is really getting old. It has been 3 weeks and the west side of the basement is still covered in water. The humidity in the house sucks but we can't do anything until the water table drops and the basement dries up. We need to do drain tile but it's about $5000.00 and we just can't afford that now. Ho Hum!

On the bright side Christopher sailed through his surgery and is doing wonderfully!!!! Way to go Christopher. What an awesome little man you are! Please everyone pray that he has wide clear margins so he won't need to have radiation. Or atleast not very much of it. We have been praying for you all for strength, courage, and to heal.

Also little Isaiah is doing well and has come such along way since this time last year. He is amazing everyone with his zest for life and spirit. please stop by and say Hi to Isaiah and his family at www.caringbridge.org/mn/isaiah.

Well the heathans are restless and destroying my one decorated room so I must seek and destroy-well remove anyway. One last thing- Maddy is getting a little curl in the back of her head so cross your fingers that as her hair gets longer her natural curls will come back!!! She is hoping.

Love to all and God Bless

Friday, November 12, 2004 5:40 PM CST

Thank you for all the prayers today! Maddy was home around noon and did very well with her surgery. She became very nauseaus after being discharged and she threw up all the way home. She has some throat pain and her tummy still hurts but other than that she is doing very well I think. I do suspect that tonight will be a long one as she will probably be up most the night with drainage, coughing and stomach pains. Luckily Donovan is at grandmas so we will not be disturbing him all night and he won't be here to get Maddy wound up.
This is how strange my daughter is. She got upset at the nurses today when they told her that she can only eat cold soft foods for 3 days like ice cream, pudding, jello, yogurt, ect, and then drink sprite and coke to help peel some of the dead caterized skin off her throat. She was mad that she wouldn't be able to eat salad or porkchops and chicken for 3 days. She cried when she got home and couldn't eat Cherrios. "But mom Cherrios are gooooooood for you!!!!! " If my mom had ever told me I couldn't eat anything but ice cream and drink pop until I got better from something- I never would have recovered!~! As I speak she is going through the fridge listing of things she wants to eat," Can I eat a carrot?-No-Can I eat an apple-No- can I eat celery?-No-You can she what I'm getting at. Pretty soon we will be down to condiments and at this point if she wants to sit down with a bowl full of ketchup and/or mustard and eat it, so be it. Although I should probably give her some more zofran first. That would not be something I would want to be cleaning up later.

Well I think I am going to go back to the other room and cuddle some more with my Princess. I just wanted to let everyone know that she is doing fine and things went well. She didn't even fuss when I got her out of bed at 4:30 this morning to get ready to go! What a kid. God Bless and Good Night!

Thursday, November 11, 2004 0:05 AM CST

November 11- Maddy's surgery is scheduled for 7:15 tomorrow morning.We will check in at 6AM. She isn't concerned about it at all. Donovan will begoing to his grandma's for a sleep over so Maddy will stay calm and rest tomorrow night. She is having surgery at Altru hospital in Grand Forks. Her ENT is at Altru and he is very good. I can't say that I care much at all for that hospital but Maddy already knows this ENT and he has operated on her before. If all goes well we should be home before noon. Donny has school so he won't be there with us. I don't like being alone when she has surgery whether it's major or minor. If anyone wants to come with me just give me a call tonight. I will have to leave in the morning about 5:20am. I still have to get Donovan packed for tomorrow and get the kids fed, but I wanted to update everyone about the when and where. Say a prayer tomorrow am for my little Sleepig Beauty as she drifts off to sleep with her happy gas blowing at full strength! I will update when I get her home and settled in. Love to All!!!

Isn't it strange how something we can detest to use and complain about having can control so much of your life if it isn't working? I can't believe how not being able to update, check e-mail or look for info on the web disrupted my daily life. For the most part I hate the computer. It's complicated, moody and only seems to work right when handled properly- my husband would say a computer is just like a woman!- But without this little anoyance in my life or atleast access to it when the mood hit, I have felt so out of sorts. My main computer crashed, over and over again so I finally gave up on it and went to the laptop. The key board really sucks and it isn't set up the way my other computer was so now I have to start all over again but atleast I am connected.

Maddy has been having re-occuring ear infections, 4 since May and 2 in the last month, so her ENT decided to put tubes back in her ears and take out her adnoids. She snores and has developed a cough that we are hoping will be resolved after surgery. We have been back and forth to the dr's constantly the last few weeks over her coughing but her lungs are clear-we've had x-rays-and there seems to be no sign of lung infection so hopefully she isn't developing some late effect to her chemo. I know some kids have struggled with chronic coughing after finishing the chemo treatment she went through. Lets pray that isn't the case. She has been coughing so hard at night that she will throw up. She went in on Tuesday for her pre-op physical and her flu shot. Now with all the shots she has had in her short life you would assume that she would be used to pokes but my word-you would have thought the world was ending the way she carried on over one little poke. She bawled for over 30 minutes. There was less trauma over having her ribs amputated than there was over this one shot. I was about ready to pull my hair out. Well atleast the white ones. She isn't even upset about having surgery on Friday and sheknows she has to have a poke to start the IV and thats ok with her. How much sense does that make. Evidently perfect sense to a 4 year old. We did schedule an appt with a dermatologist to try and figure out why she has so much hair growing on her back. The pediatrition was really confused as to why my little cheeky monkey is starting to look like she could actually belong to the primate family. With her starting kindergarten next fall and being in swim class and what not, kids are going to start noticing and commenting to her about it. She goes swimming every Thursday at school and luckily no one has said anythig to her - YET, but they do make comments to her about her hair growing back in and being so short and spiky. She really gets upset if anyone says anything negative about her hair. She won't let me do anything with it, not even comb it down alittle. Can you imaine her in 10 years!?! She still loves school and gets upset when the weekend comes and she can't go for 2 whole days. The tragedy of it. She loves church and Sunday school so that does help. I really need to find a mentor for her faith. She needs someone positive in her life to encourage her love in God and help her faith blossom and grow. I know you are all probably thinking this should be my job and I do encourage her and try to answer all of her extremely complicated anddiverse questions, but I want something more for her than what I can give her. I still at times struggle with what I believe and to what degree. I want someone who has an unfaultering beleif that can keep that spark alive in her that I can see everytime she talks about how much God loves us all and how much Jesus sacrificed for us to be saved. I have someone in mind and hopefully they will be receptive to the idea. For me it seems to be a rare gift to have so much faith and insight into your religion at such a young age and I don't want her to lose that. It is a blessing.

Donovan has been doing Ok. He is at that age were he finds great delight in irritating his sister until she is beside herself with frustration. If I do finally get him to leave her alone than she will seek him out and do the same thing back to him. Somedays bed time just does not come soon enough. He is busy working on his christmas list for Santa. He sits down with the toy catalogs and starts ripping out the pictures of all the differant toys he wants. It if wasn't such a good distraction for him that keeps him occupied and away from his sister I would tell him it would be much easier just to mall the entire catalog to Santa and call it good. I told him he needed to shorten his list up a little because Donny and I don't have much money this year and he said that we don't need to worry about because Santa will bring him all that he wants and it won't cost us a dime. If he only knew. I apologize to any of you who might not have known the trueth about Santa. I don't mean to ruin your hopes and dreams!

Any way, I am so tired I can hardly stand it. Our basement has been ful of water for the last week and a half and tomorrow I need to go and try and suck somemore of it up and see if we can't get it under control. Well my eyes are crossing so I am not going to proof read this. You'll just have to cope with the bad spelling and poor punctuation! More to come soon. God bless and good night!

Thursday, November 4, 2004 2:03 PM CST

This is Pam, Holly's friend, I am updating to let you know how things are going with Holly and Maddy. Holly said she will write a more in depth update when she gets her crashed computer fixed!

Maddy is feeling better, everyone is doing ok. They had a great Halloween.. Maddy will have surgery next Friday the 12th to get tubes in her ears, and have her adnoids out.

Holly said other than that, she has just been busy trying to get her basement to dry out.

They are thinking about all of you, and appreciate all of the support you guys continue to give. Hopefully she will be back online soon, and will talk to all of you then!

Thursday, October 28, 2004 9:32 AM CDT

Still no luck with getting my photo's updated, you will just have to bear with me another week and hopefully I can get it all straightened out. I guess I am going to have to reinstall my system as I must have accidentally deleted a key file in my program. See what happens when you try to function on no sleep and a foggy brain! :) Well Maddy has an ear infection and will go in next week to an ENT to see about tubes in her ears again. I have to be careful when I mention tubes around her as she assumes I mean one up her nose. Yesterday she ran to the fridge and started grabbing randomly at what ever she could reach crying,"I will eat mom-NO TUBES, mom please NO TUBES." I felt so bad. It took quite awhile to convince her I was talking about ear tubes and she wouldn't feel a thing. She doesn't remember having them before as she was just 2 years old when we could finally put them in. I swear she was born with an ear infection. That and excema. When I took her into the dr on Tuesday he asked me how I knew she had an ear infection if she didn't have a fever and no ear pain. I told him I can look at her and tell. The color of her skin and the way her eyes look. She also has a personality change that most people would chalk up as typical 4 year old behavior but Maddy has never been typical so when she gets crabby, demanding, unpersonable than I know what it is. She has been vomiting all week which has been a joy to deal with as I am suffering my own intestinal battle. I think for her she is swallowing to much nasal drainage and it upsets her tummy, for me I think it is the antibiotics I am on for my lung/sinus infection. I am not coughing as much but still feel incredibly tired, exhausted, and I have so much pain all the time. I keep waiting for the morning that I will wake up and this fog will be lifted from my brain and things will seem clear again. I seriously am not functioning very well right now. I know I just need to give it more time but I am sick and tired of feeling sick and tired.

Anyway-Donovan is having one of his drawings highligted in a calender made from pictures made by the siblings of children with a serious chronic or life threatening illness. It is really cool, I ordered one yesterday. Part of the proceeds go to help Kody's family with their ever growing medical bills and the rest goes to help send gifts to the siblings of these ill children so they don't feel so left out. I think it is an awesome thing to do so please go into the guestbook and click on the link Helen has provided there and order your calender today. You can preview all the pictures on Helens site and see the pictures of Maddy and Donovan on the cover of the calender. Thank you so very much Helen for giving us the opportunity to contribute! I can't wait to get mine!

Also I have to apologize to my dearest Sabrina as I forgot her birthday on Tuesday. Actually there where fleeting moments thru out the day that I would remember but failed to call or even send an e-card. How awful I am. And truly when it comes to remembering birthdays -I suck. My kids' birthdays I make a huge deal out of but everyone elses birthdays just seem to elude my memory. So please every one send your warmest birthday wishes with me accross the ocean (well depending where you are I guess!) over to Italy and Sabrina in hopes that she feels all the good wishes and love we send her. HAPPY BIRTHDAY SABRINA!!!! Please forgive me!!!!!:) I try to make up for my neglect throughout the year at christmas so hopefully I will find redemption! Although this is going to be a very tight year for us as far as christmas goes. Speaking of christmas I decided last night that next weekend-well if I have the energy by then- the Halloween stuff comes down and the christmas stuff goes up. The heck with the fall decorations. With our gloomy, bitterly cold weather it doesn't feel much like fall anymore so we are moving right along to christmas. I was talking to my Pam last night and she said she too wanted to be looking at her christmas lights with a warm fuzzy feeling so I got to thinking, why wait. If that is what we want then why not just do it. No rules saying you have decorate for Thanksgiving right?!? So hopefully we are feeling better and have a little ambition next so I can be watching the lights on my christmas tree by sundown on Sunday. We can't have real trees anymore but we do have the most beautiful white tree that I decorate in gold and crimson. I just can't wait. I'm feeling the urge to bake now, so I better redirect my thinking. I only have enough energy for 1 thing today and that has to be laundry. We are running out of the tidy whities and socks. But I think I will take a nap first.

Maddy hasn't puked on me yet today so we are doing much better than yesterday. Donny just called and said the flu is starting to go around and Maddy needs her shot. I told him until we get the letter from her oncologist stating that she is on the flu shot list-she can't have one. This year there is a medical board that is collecting names of critical patients from area dr's and those people will be sent letters to bring in and then can get thier shot. No letter-no shot. Hopefully her letter comes next week so we can get her some protection. The rest of us will have to go without this year. I get very angry when this shortage keeps happening year after year. It's not like it is a big suprise to everyone when the flu comes back around every fall. It's as reliable as death and taxes so why isn't the government or who ever is in charge of order the supplies plan ahead and say hey we where short so many millions of shots last year so maybe I should order more this year. It's not rocket science. Ok i will get off my soap box now and run to the bathroom. It's going to be another long day for me.

Don't forget to check the guestbook and go to Helen's site and chck out the calenders-they are so cool. Please send your prayers to Christopher as he tries to get count recovery and avoid the after chemo fever so he can prepare for his major surgery next week to amputate his ribs that are affected with Ewings sarcoma. His cancer is in the same spot as Maddy's was and he is only 2 years old. This just is a nasty disease that robs these poor kids of their most precious years. Please pray for them and visit his site. His link is below.

God Bless and I will update again soon.

Tuesday, October 26, 2004 10:39 AM CDT

They are coming to take me away hee hee, ha ha, to the funny farm where life is wonderful all the time! I like to see the nice young men in thier clean white coats as they are coming to take me away!!!! If anyone knows where I can get a copy of that song please let me know as I think it is going to be my new theme song. Not that I technically had an old theme song but it seems appropriate for my current state of mind.

So here is the latest. I have been battling a lung/sinus infection for the last month but finally got sick enough last Wednesday to go in and get checked out. I have absolutely no energy at all. I don't just mean I am tired but walking from my upstairs bedroom to my downstairs couch requires a 2 hour nap to recover so I can walk across the house to go to the bathroom and then take another nap. My kids have gotten ice cream for supper because it involved the least amount of effort on my part to prepare. I cough all day and can't sleep at night. And of course because I am coughing Maddy starts hacking so I drug myself into the clinic with her on Saturday as she coughed so hard Friday night she was puking. Well the chest x-ray came back clear so we chalked it up to an allergy thing and went home with cough medicine with codiene and some zyrtec. Well I had him check her ears and they were fine on Saturday but now this morning when I peeked in there they are red so at 2:30 I will take her back in to the clinic. She spent all day yesterday throwing up and has just been so crabby. She coughs most of the night even with her cough medicine. Between Donovans growing pains and her coughing there is no sleeping here at night. I made an appt. for an ENT next week and will have her checked to see if we should put tubes back in her ears. They fell out right before she was diagnosed but since this is her 2nd ear infection this month and her 4th since April I think it would be a good idea. She is napping upstairs right now so you know she doesn't feel good. She still doesn't have a fever but she is plugged up and just not comfortable at all. Donovan has been complaining of itching all over the last few days but has no rash anywhere-yet. The eternal optimist that I am here. I hope he isn't developing some strange allergies to like air or water, I just wouldn't put it past my kids you know. I know I shouldn't be complaining about ear infections and itching when there are so many kids going through so much more right now. Maybe if I wasn't so drained I could cope better. I'm not feeling sorry for myself at all, just very tired and burnt out on the frustrating aspects of daily life.

Donny is out of town at a conference for school, go figure the kids would be sick and puking when dad is gone. I think he somehow strategically plans this. Not that that is possible but you never know. Other than we are all feeling like crap right now not much more is new. I guess if anyone knows how to unjam a computer some tips thrown my way would be helpful. My computer is barely functioning and Donny says it is because I have way to much @^%$@&% stored on it. Well I wanted to move all my $%#^$^ on to a disk but my computer won't even let me do that. I can't update the pictures on Maddy's site here, nothing. It won't let me copy my saved e-mails onto a cd either. I don't understand it. So I have not been online much lately and haven't had the energy to really try and work on it either. It's pretty sad when you don't even have the energy to point and click. It's got to get better soon right?!?

By the way Ziggy the kids absolutely loved the picture of you in Maddy's guestbook. Could you please e-mail me a copy so I can print it out for the kids? I can't print just one page of the guestbook, it will only print it all and I just don't have that much ink and paper! Maddy and Donovan think you must be a real super hero. I guess I haven't corrected their thinking yet on that. It's not very often you get to be seen in that way in your life.

Well Maddy is crying so I am assuming she has thrown up again. I gotta go. Love to all and please keep praying for Maddy and all the other brave little souls out there. Special prayers to Kody and his family as he recovers from major brain surgery after relapsing with neuroblastoma and a new diagnosis of melanoma. And prayers to Christopher as he tries to recover from chemo so he can have his amputation soon. There are so many more that I just can't list them all now, but know that I am always thinking of you. My love and prayers - God Bless.

Monday, October 18, 2004 9:29 PM CDT

I know it has been forever since I last updated but someone seems to have their finger on the fast forward button for my life. I have really been struggling since the scare with Maddy and the lump on her back. I know so much more now than I did a year ago about this blasted disease and all it can do to a person and their family. I know the odds, I know the statistics, I know to much sometimes I feel. All I want is my baby to live and be healthy and happy. That's all any parent wants and for those who have to live with cancer in their lives, know that that is an unstable variable. At any moment are lives can totally stop and the nightmare can begin again. I do not live in total fear about it, I do not get up every morning and obsess over the thought and maybe because we were getting back into the fast pace of life again so quickly without much thought to her cancer that it hit me so hard. That fear again of did I miss some sign that things weren't well with her? I need to step back and reacess our lives. I had gone back to work at the home but I am not feeling as if I can focus enough right now to do a good job. The kids have been waking up at night crying and screaming my name, when I run to them to see what is wrong they tell me they thought I went to work and never came home again. It is breaking my heart that they are still struggling with so much fear and insecurity. Donovans therapist has said things are moving to quickly and that the kids need more time to adjust, that we all do. So on Friday I put in my notice and am going to step back and just spend some more time with the kids and getting them to a place were they can start healing from all the stress and trauma from the last year. It was a very hard decision to make. I feel like I am really letting people down, but I know that I just am not able to focus enough right now to provide the care that the residents deserve. I have been having such horrid migraines lately that I can't hardly see and am not hardly functioning. My migraine pills aren't even taking the edge of the pain anymore and they make me so shaky.
Donny's dad's funeral was very hard to make it through. That whole week just sucked the life right out of me. After Maddy's scans came back clear we heard that George had died so we started making plans to go back down to South Dakota for the funeral. Well Donovan developed another rash on his neck that turned out to be another go around of Impetigo so we couldn't take him with and Maddy's ear infection wasn't cleared up yet so she was still pretty wiped out. We decided to leave the kids home and Maddy went to her cousins house and Donovan went to his grandparents so as not to spread his rash to the other kids. As I was dropping Maddy off at school on the 8th and heading home to pack so we could leave that day at noon I hit a deer. I felt so bad for the little doe, she was hurt pretty bad. I thank God that my brother was only a mile away and was able to come right away and put her down so she didn't have to suffer. I didn't damage my car but it sure shook me up. I was so paranoid driving down to Pierre that day that I was a total wreck by the time we finally got to our hotel that night. The funeral was early Saturday morning and the service was very nice. The funeral home did a wonderful job with getting George ready and he really looked at peace. It was hard for both of us to say our final good byes to him. I don't think that Donny has really even started to grieve for his dad yet. I think he is so much on auto-pilot right now that he just isn't able to deal with it all yet. I think I have just been greiving everything lately, not just Georges passing, but greiving for our lives, Maddy, everything and it has left me so drained. I have tried to stay so strong for everyone for so long and have held so much in that now that some of it is coming it feels like the dam is breaking and a flood is coming. I still am trying to hold it back but sooner or later I am going to lose the battle and it is going to happen. I guess that is what therapy is for, right?!?!?

Well enough about all that crap. The kids are so excited for Halloween. Maddy wants to be a witch and a Princess-not sure yet how that is going to work out, and Donovan is going to be spider man. I have decided to take the kids down to see my sister and her family for Halloween so that will be a nice little break for us. It's a 6-7 hour drive one way but that's OK. The kids miss her boys and I miss her so away we will go. I did actually manage to get the house all decked out for Halloween although my kids are not grasping the concept that decorations are to be looked at and not played with. I secretly am longing to put up my christmas tree and start my holiday baking. I love christmas and want that warm fuzzy feeling you get when you are sitting in your decorated house, cuddled up in a warm blanket on the couch watching the lights blinking on the christmas tree as the kids sleep upstairs, dreaming of santa and toys. This year Maddy will be well and we can actually enjoy each other and the holidays. She was so sick last year at christmas. She had emergancy surgery 3 days before christmas and then chemo started right after. We didn't get out of the hospital until late christmas eve night and she was so wiped out christmas day that it just wasn't enjoyable for anyone. This year is going to be full of first aniversaries of her treatment. I don't sit and dwell on them it just sneaks up on me. I will be thinking of something -like christmas -and suddenly I will remember something that was happening with her at that time last year. I guess it will just take time to heal.

Maddy loves school and ballet. She gets to go swimming every Thursday and loves her teachers. Donovan is doing much better in school this year and that alone takes a huge weight off my shoulders as to whether or not holding him back was the right thing to do. The kids can't wait until the snow we have been getting lately-yes I said SNOW- starts sticking around instaed of melting so they can go sledding. I can't get over how cold it has been lately. Bitterly cold and wet, not the enjoyable crisp autumn days that I love so much but damp, chill you to your bones, raw wind cold. The kids will be wearing thermal underwear and winter coats trick or treating this year. I plan on having everyone over for Thanksgiving this year and I am looking forward to that. I love to feed people so it is the perfect holiday for me. I am going to have to find some time and a good freind and make some lefse. You must have lefse at Thanksgiving-even if you aren't Norwegian.

Well I am getting so very tired and must go to bed. I have been really struggling to get up in the morning. Since I can't take Vioxx anymore for my arthritis life has really stiffened up. I am not sleeping well any more (Ok that is kind of a dumb statement as I don't think I have really slept at all in the last year-except in Florida on that glorious bed in our villa at Give Kids the World, I slept so sound on that bed-it was pure heaven!)and I hurt so bad in the morning I can't hardly move.I am afraid to try anything new because my system is so maxed out right now that I just don't know if it would respond to anything new,so I have just been trying to cope with it.

Please pray for little Christopher as he gets ready for his amputation of 3 of his ribs on October 28-the exact same day that Maddy had her amputation last year- he is fighting ewings also and his parents need all your prayers to help them get through this horribly difficult time right now. And thank you my dearest sister Sabrina for taking the time to send everyone e-mails to keep them updated on what was going on with Maddy, we all love you so much!
And please pray for all the kids out there tonight that are battling some horrible disease, fighting for their lives. Pray for victory for them and strength for their families. My goal tomorrow is to update the pictures in the photo album and on the journal page so wish me luck-but don't hold your breath! Thank you for all of your support and love. God Blees you all and good night!

Wednesday, October 6, 2004 8:51 PM CDT

I don't even know where to start. Our lives are truly a never ending roller coaster.
Last week we got a call from Donny's step mom that his dad wasn't doing well and that we should go and see him before it was to late. So Wednesday we threw the kids in the car and took off for Pierre South Dakota. Niether one of us was prepared for how ill Donny's dad was or how fragile he looked. The kids ran right to him and hugged and kissed him and told them they loved him. Donny's dad, George just held them and cried. George needed to see Maddy and know she was OK. It was a very hard week filled with so many emotions. Donny and I both had a night were we sat up with him most all night and talked about so many different things. It was a very healing time for both of us. I spent Thursday night up at the hospital with George and he talked very freely about his life, his regrets, his love for his kids and grandkids. I held him as he cried and struggled to let go of his pain and sorrow. We prayed together and I felt such a sadness for him. I was not prepared for the intense feeling of loss I was having for him, the love. He may have made many mistakes in his life but he truly loved his children and tried to do the best he could by them. We saw the sun come up on Friday and I left him that morning with a sense of peace for him.
He rapidly deteriorated over the weekend and was not very lucid on Sunday when we left, but he did know who I was and he greeted me with," My dear Holly you came." He started to cry and said,"You are going to leave me today aren't you?" I said,"Yes George we need to go home know." He seemed to shut down then so one of Donny's sister's took the kids so we could say good bye. George stood up and hugged me and I told him I didn't want to say good bye to him but he told me I was only prolonging the agony of us leaving so he told me he loved us so very much and then sat down and closed his eyes. I felt my heart break as I walked away from him.
Today at 1pm he passed away. We love you George. I will always remember the sun coming up. May you finally rest in peace and free of pain.

While we were down in South Dakota I noticed a lump on Maddy's back on the rib above her amputation site. She started running a fever and complained of a head ache. I was starting to panic because I know that the lump had not been there before we left so Monday I took her into her pediatrition in Fargo and had him check her out. The fever was due to a horrible ear infection but he was not at all sure about the lump. We drew some blood for labs and scheduled scans for the next day. I could tell by what he said and how he didn't say certain things that he was thinking Maddy was relapsing. I can not even begin to describe to you what I felt. I know so much more about this damned disease now and I know what an early relapse would mean as far as survival and I just about didn't make it through the night. I was sure I was going to have a heart attack. My chest hurt so bad and I couldn't breathe. My head was spinning and I just wanted to throw up and pass out.
When we got to the Roger Marris Cancer center in Fargo yesterday am for her scans, everyone there was so solemn and had tears in thier eyes. I was sure they knew something I didn't. Maddy's scans took about 3 hours and she was absolutely perfect through the whole thing. We waited in the cafeteria while the scans where being read and then we returned to the cancer center at 2:30 for Maddy's appt with her onc for the results. I was pacing back in front of the desk shredding the pom-pom on the top of Maddy's fleece hat the nurses gave her. When her onc did finally come back we all piled in a room-the nurses all came to- and he said that there was NO SIGN OF ANY CANCER CELLS ANY WHERE IN HER BODY!!!!!!!!!!! The lump was due to a post surgical cyst type thing, but we all started to cry and hug each other. I could not believe it. I still am in shock that she is OK. I do not know how much more stress my poor heart and body can take. I tell you though it was the best Birthday present I ever could have recieved-clear scans! I was going to completely give up my birthday as last year I spent it in the hospital with Maddy as she battled a high fever and peeling hands and feet. So when we where thinking she was relapsing and where sitting there doing scans again on my birthday I decided I was going to quit having them all together.
So to end our roller coaster of a day we went out to supper with Emily's parents and celebrated her continued health. Unfortunately Emily had a class that night so we missed her but the evening was wonderful and I was so relieved.
I am now just taking a very few minutes to write this and update you all. I have yet to check the guest book but to all who have continued to pray for Maddy and support us, thank you from the bottom of my heart and God Bless you.
I am trying to get some laundry done and the bags repacked so when we find out when the funeral is we can be ready to go. I would assume it would be Saturday or Sunday, but since I have a meeting all day tomorrow and won't be home until late I need to get what I can done tonight.

Dear God,

Thank you for hearing all our prayers and bringing our precious Maddy through this scare of relapse healthy and cancer free. I know you are welcoming George into your heart and filling him with your love. May we all have peace knowing that his pain and suffering on this earth are over and that he is with you, watching over us and loving us from above. God please give us the strength to continue on with our lives and heal from the fear and pain we have suffered with this last week. I am feeling very tired God. Please heal my heart and help me to find the strength within to keep moving my family forward on the path that is right for them. Help me to make some very tough decisions coming up in my life, and help me to see what is really best for my family and not everyone else. And please dear God, Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

Amen

Wednesday, September 22, 2004 12:08 AM CDT

Change, change, change, a never endeing, daily battle with change. The last few weeks have been so hectic for us. We are all trying to agjust to Donny starting college and Maddy and Donovan going to school. Juggling appts, school activities, church, minor tragedies,and since I never seem to have enough to do I had to through going back to work on the pm shift into the whole mix, just because. I guess I wasn't close enough to a nervous breakdown already so I guess I thought I should hurry it up a bit. Donny insisted that it would be good for me, that I would enjoy getting back out among adults and doing something I enjoy. Granted I do enjoy what I do and I have been lacking in adult stimulation, but I also feel overwhelmed by it all. I do not get to see the kids at all on the days I work and it is taking a toll on the kids and me. I leave for work before they get home from school and I don't get home until they are already fast asleep. I think maybe it was to soon. If it was hours when they were in school I could handle that, it's this pm shift that makes it hard, and that is all that is available. Oh well,right?!?! It also doesn't help that my left knee is going out on me and I had to go in and have more cortisone shots in yesterday. I have osteoarthritis in my knees along with bone spurs. Doesn't that sound like fun?! My knee does feel a little better today. Since I can't do any cleaning or make to many trips around the house or anywhere actually, it is my day to catch up on the computer. The bad part is I get so tired when I sit down in front of it that I can't hardly stay awake to do anything. I feel like I am running on empty.

The newest tragedy in our family was on Sunday when I was heading off to church to get ready to teach Sunday School and I was slowely backing out of the garage when Maddy's Sleeping Beauty cat ran under the car and was pinched by the wheel. I was going to work early that day right after church so thank god the kids weren't in the car when it happened as Donny was taking them in seperately. Well I found the cat and Donny ran her to the vet and I took the kids to church with me. Her diaghram was ripped and the vet said her chances weren't good as they had never preformed a surgery like she needed before, but since it was Maddy's cat we opted for surgery and said a few prayers. Well evidently god was listening and our Sleeping Beauty came through surgery and is home today recooperating upstairs in the bathroom. Our dilema know is she needs to be an inside cat and we all have allergies. I do not know what to do there. She is a great cat though and we have some awesome vets. This is the second time they have saved one of our cats lives when there looked like no hope- and no I did not run over the other one!- Luckily for us Maddy and Donovan have been so busy this week they haven't noticed that Sleeping Beauty wasn't around so now I have until 3pm to think up of how I am going to explain what happened. They will definitely notice a cat in their bathroom. Ain't life grand.

There was a debate at work this past week about the quality of a persons life and the decision to pass on medical intervention to try and save a persons life. When is enough enough, when do you let go? It is a very personal, gut wrenching decision that is never easy for any person to make. I had to side with quality of life over quantity if there really was no hope for complete recovery or at least enough of a gain so that the person could enjoy being alive and do what they want to or need to do. The workers were pretty evenly divided over the issue and I could see and understand both points of view. The irony being that we were discussing making the choice to let go of a loved one when they are suffering and there is little hope and yet I went home that Monday night with my daughters cat on life support in the off chance they were wrong. I guess that desire to keep fighting and never give up is so strong in some of us that we go the extra mile, we try that one last shot in the dark. And it worked. Does that make me a hypocrit? I hope not, just someone with a deep desire to never quit trying until me heart and my soul scream out that enough is really enough. I haven't reached that point yet with to many things. Somedays I really have a hard time staying positive and moving forward, but deep down I just know I have to keep going and do what I need to do to get myself and my family through this horrible adjustment period. Maybe I am moving to fast on some of the things I am doing, maybe I should have given myself more time but since the ball is rolling now I have to go with it and make the best of it right?!?!

Well I should go check on our little patient and give her medicine to her. I can't even begin to touch on the guilt I feel and the saddeness for causing this poor animal pain and having her suffer, so I just won't go there. It is absolutely amazing at her will to live and her personality. the vet said she was one of the nicest cats he has seen and was really at a loss as to why she made it through and is doing so well. I know the reason to that one-She is Maddy's cat.

Please keep us in your prayers-Say an extra one for our little Sleeping Beauty cat-and remember that miracles do happen. I wake up with one crawling into my arms every morning!!!!

I do not know what is up with my computer as it will not load the pictures from the Make A Wish Gala. I have been trying to put them in her photo album but they just won't go. I will try again today.

Wednesday, September 15, 2004 9:57 AM CDT

We made it through Friday! The Gala was so wonderful. The decorations were fabulous, it really did look like an enchanted garden. There were so many wonderful gifts donated for the auction and we met many, many people that were so caring and compassionate. We even got to see some of Maddy's nurses from Meritcare and some of the kids that are out of treatment now and doing great. The kids had a blast and ran around checking everything out. Maddy's dress was gorgeous and Donovan looked so handsome in his suit outfit. I was so horribly nervous that I hadn't eaten for a few days before the gala so when we sat down to eat I had 2 sips of wine and my face flushed! I figured I better quit before it went completely to my head and I couldn't read my speech at all! They had put together a slide show of Maddy from before diagnoses through her chemo and surgery and ending with her trip to see her Sleeping Beauty.( They even had a girl dressed up as Sleeping Beauty at the gala and she gave Maddy a bouquet of pink roses. Maddy was just so thrilled.)The slide show played behind me as I read my speech and of course my so well behaved children ran back and forth accross the stage behind me as I tried to speak without crying. Gotta love kids! After a few minutes behind the podium (And after having my kids running around totally stealing the show!) I became very calm and was able to give my speach and I think I did pretty well. The few times I could look up at the crowd without losing my place I noticed there weren't too many dry eyes out there. I don't know if it was my words or the pictures of Maddy but it seemed to touch everyone. I had many people come up to me after and thank me for saying what they all had felt when they were going through treatment with thier kids. It was a very emotional night but so wonderful. To be surrounded by family and friends, to have your kids with you and being healthy and getting into mischief as young kids do, to be able to celebrate life and help with an organization as great as Make-A-Wish, well it just doesn't get any better. I just can't thank everyone enough for thier love and support over the last year. Everyone at the gala was so wonderful with the kids, they were very excited and alittle rambunctious (Mom's polite way of saying she thought they were being brats!)but everytime we went to catch one of them someone would stop me or Donny and say,"This is their night to shine, let them go and have fun, they aren't bothering anyone." So we did. Maddy got on stage and sang you are my sunshine and Donovan got up there with her and did his Elvis impersonation with the microphone stand. The 2 of them together up there was just hillarious. And we got it all on tape so we now have black mail on them for later in life!

On Saturday we met Emily and Deb at the mall and had portraits taken of Maddy and Emily. They are so beautiful together. I really think Emily could be a model. We had the hotel room at the Holiday Inn for the weekend so after pictures we sat by the pool as the kids swam and looked over Emily's vacation pictures. It was such a great weekend all the way around.

I started back to work just very part-time this week and I tell you what, my brain just isn't what it used to be. It is so hard to concentrate. Yesterday I passed Donny on the road as he had just picked up Maddy and I was heading into work (I work the pm shift so I don't get to see the kids at all the days I work-aside from the half hour before school) We stopped so I could say hi to her and Maddy just clung to my arm and cried she didn't care if we didn't have any money, she just wants her momma! It broke my heart. Adjusting back to life is a much more difficult undertaking than I thought it would be. We still have so many emotions and turmoil inside of us that we are trying to deal with. Eventually I know it will come when everything will just fall back into place, but until then it is going to be a daily struggle.

I ask for your prayers for Carter Martin's family. Carter went to live with God and have peace from his long battle with Ewings on Sunday the 12th. He was a beautiful and strong little boy and we are very saddened by his passing. My heart grieves deeply for his family. May you finally be free from all your pain dear Carter, we all love you and miss you. His web site is www.caringbridge.org/ga/cartermartin - please stop by and give his family support.

Well I have to run again and get Donovan to an appt. God Bless You All, and may he heal and protect all our children.

I will put new pictures in her album after supper tonight so you can check them out later!

Thursday, September 9, 2004 1:15 PM CDT

Just a quick update for me today. Donovans mystery rash is finally starting to heal and he was given the all clear to go back to school yesterday. Still not sure what the heck it really was but the steroids and antibiotics seem to be helping now.As a friend of mine pointed out it seems that every year around this time Donovan develops an illness that is able to baffle all of our medical community. Last year it was the non-stop vomitting and diareah with blood that no one was ever able to diagnos a problem for. I am so anxious to find out what it will be next! Can you feel the sarcasm there?!?!?!?! If I never have to clean up another sick butt mess again in my life-it will be to soon! but so far no signs of anything on Maddy.YEH!!!!

On a more pleasant note. I am desperately trying to finish my speach for the Make A Wish Gala tomorrow night and Renea had to call and reassure me that there will only be 300 people sitting and staring at me tomorrow night. Thanks Renea, I needed that! My goal is to get it polished up tonight and get everyone packed for the weekend. Maddy and Emily are going to have their portraits done together on Saturday and I can't wait to see how they turn out.

I feel it is going to be a fabulous evening and am getting excited to see Maddy's pink dress and all the wonderful little extra's Allen Evans Bridal in Moorhead is putting together for her. A little plug for the store-If you need a prom dress or a wedding dress, or just something formal-their dresses are absolutely gorgeous and you won't find a nicer group of people to work with. Just tell them Maddy sent you!

Well my phone is ringing again and I still can't find where Donny put it. The one I can find is now dead and the constant ringing is driving me nuts. And yes I have already looked in all the drawers, it's not there this time!

Wish us luck tomorrow and I will fill you in on our magical eveing when we get home! Love to all and God Bless!

Before I forget again there is a precious little boy that was just diagnosed with ewings in the same spot Maddy's was. They could have been twins. He is only 2 and his family needs your love and prayers. Please visit him at www.caringbridge.org/wi/christopher

Sunday, September 5, 2004 11:26 PM CDT

It never ends at our house. I feel like I am still in chemo world. I had mentioned before I believe, that last Saturday I took Donovan in to the walk in clinic because we found a small spot of impetigo on his right upper thigh. WELL..... He was put on antibiotics and a cream called Bactroban. Should have done the trick. Well the spot spread to his knee and started getting bigger. So on Thursday I took him to the clinic to see a family dr. The dr. had never seen anything like it so he called in a pediatrition and he also said he had never seen impetigo spread like that on the treatment he was on. Donovans teacher at school that day noticed red dots on his palms and the doctor told me that all the cuts and spots on his legs were new sores. They switched his antibiotic and said he could not return to school until it had cleared. Well Friday morning Donovans feet were full of dots and the rash had spread down his left leg. I took him into a dermatologist and he told me in his decades of treating people he had never seen this happen. He said it appeared as if Donovan had a secondary infection inside his impetigo sores and was having an internal allergic reaction to something causing the hives. He added a high dose steriod to the regime and told me to check back on Tuesday. So now today the rash has spread to his back and his elbows and he has spots on his forearms. I am going nuts. I have to wash all his bedding practically daily, bath him in antibacterial solutions, apply cream and bandages to all of his sores twice a day, give him meds every 4 hours and wash his clothes seperately, along with bleach the tub, sink, floors, just like when Maddy had low counts. And with all this hard work to protect her she developed a red sore on her knee tonight. I am going to have to take them both in on Tuesday and have Donovans sores biopsied to find out what the hell it is and have Maddy looked at. I can't take them anywhere. I am going to have to keep Maddy out of school now until we figure out what is going on. God I hate this. And to top it all off, all the medication Donovan is taking is giving him the runs so bad he isn't able to make it to the bathroom in time. YUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The poor kid came out of the bathroom on Friday crying that he was so sorry but his butt got sick all over everything. I felt so bad for him. And for me 'cause I had to clean it up! Being a mom is such an unglamerous position sometimes. I am so burnt out it's not even funny. I just wish my kids would be healthy for awhile so I can have time to breathe. Donny is in school now and isn't home to help and I am so overwhelmed right now. It has been such an aweful adjustment to everyone starting school and that doesn't help. I am not a morning person-I do believe I might have mentioned that before-and I have been getting up early everyday to get the kids ready and run them to school, pick Maddy up in the afternoon, run them to all thier appts, and then come home to clean and do laundry. I am getting tired. I have had 1 day with no kids and that was Thursday. I came home from dropping the kids off at school and called the dr to see if I could Donovan in, I sat down and crashed. I didn't get anything else done I needed to that day. Donny was the one to get up and do all the early morning stuff and I took care of the rest. It has really been a struggle. I don't hardly sleep and that doesn't help. I can't just go to bed at 10 o'clock and fall asleep even if I am exhausted. It's usually 1-2 am and that's 4 hours after I have taken 2 different sleeping pills.

I am sorry to you all for complaining tonight like this. I am just so very frustrated. I am really worried about this rash and the fact that Donovan is just not himself, and now the sore on Maddy. It could just be that Maddy fell on her knee and that is why it looked red but I won't know until I check it in the morning. I am also disappointed that we had to cancel our trip to see Donny's dad. He is very ill and I wanted Donny to have some time with him but Donovan can't be around him so we felt it best to wait. I tell you what, when you have a sick child your life comes to a grinding halt.

Well I should quit complaining now and be optimistic that everything works out this week so we make it to the gala this weekend, which means I need to write my speech. I have been procrastinating on it because I am so nervous about talking infront of people. I want to do a good job as I am so grateful for everything Make A Wish has done for us. But still nervous. I don't want to get up there and babble like an idiot and I pray that my dyslexia doesn't kick in so that I end up saying everything backwards. When I am nervous I have a tendancy to talk really fast and skip a few complete thoughts or so. I keep telling myself that I made it through my speech for the Relay for Life and I can make it through this. I may cry though.

Well please keep us in your prayers and let us find a cure for what is ailing Donovan. God Bless and Good night.

Saturday, August 28, 2004 10:19 PM CDT

I'm Back! Well the trip was absolutely amazing and we are still recooperating from all the walking! That Friday after we were welcomed home by Elmo we went to the Meet and Great before the show and were introduced to Bert and Ernie! Maddy was hoping for Elmo again but was totally thrilled anyway. It had been a very long day as the kids had both had physicals that afternoon and SHOTS! Do you ever wish there was a backdoor to the clinic that you could drag your limping, crying kids out of instead of having to go through all that drama in the waiting area?!?! So the concert was a good distraction from the days earlier unpleasantness, and the concert was fabulous! As an adult I was expecting an hour or so of the characters sitting on stage talking, maybe a song or too and that would be it. It was changing scenes, dance numbers, light shows, amazing special effects, the characters were so bright and vivid and the acting was wonderful. I had as good a time as the kids did. Thank you again Make A Wish. What a great show we were treated to. Our favorite part was when they had a black screen up and neon props that actors dressed in black would move around the stage. You couldn't see the people so it looked like the puppets were real. It was so cool. I guess you really never are to old for Sesame Street. It was a very good show. Afterwards we took 2 very tired, but happy kids home and tucked them in. Maddy said she was going to have good dreams of dancing with Elmo and Zoey. I told her she could only have good dreams and she just smiled and said,"I love you Momma." She turned over and was fast asleep. I stood there for awhile and watched her smile in her sleep as I am sure visions of Elmo danced through her head. I smoothed down her fuzzy hair and kissed her sweet little head. I couldn't help but shed a tear for all the happiness that has been brought to us out of so much pain. We are truly blessed. I thought of all the wonderful things she has been able to do, that all of us have enjoyed doing and all the awesome people we continue to meet. I used to be a bit of a hermit, very introverted, and her cancer has changed me in so many ways. I can no longer hide from the world and watch life pass me by. Maddy makes me get out there and stay out there. I have pushed my limits out so far it is unthinkable of ever going back now. I do have moments were I would like to just stay home and reset those boundaries, but they are getting fewer and further between. Cancer is a monster, a horrible @#$!!^@^&!@#of a disease, BUT - It does not mean the end of life, maybe the end of life as you knew it but not the end, it is an awakening of sorts. A new beginning. That is a very scary thing in itself. But I watch Maddy and Donovan discovering new things, excited about each new day, ready to go out and conquer the world, and I realize that no matter what cancer has taken away from us, it hasn't taken that.
I wander in to Donovans room and gently pull his thumb out of his open mouth. He twitches slightly and starts to snore. I touch his forhead and kiss his cheek. He smiles in his sleep and then continues with his soft snoring. So much has happened that he does not understand. He is still afraid Maddy is going to die and he will be alone. No amount of reassuring seems to help. The way they fight and bicker some days and his jealousy towards her would make a person think otherwise, but at night he cries in his sleep and calls out for her. I think out of all of us he has been hurt the most. Donny and I can acknowledge our fears and seek the help that we need when we need it for what ever it is, but he doesn't understand what he feels and it is so scary for him. Even Maddy can come and tell us that she is sad about something and why it makes her sad, or that something hurts and she needs medicine. But Donovan just doesn't understand what all his feelings are yet, he can't put into words what his heart and mind are telling him. He sees a therapist regularely but until he makes the connecting he will continue to suffer. I have said that there are times that it is easier to deal with cancer than his post traumatic stress beacause atleast with cancer you can have a plan for treatment. You can shrink the cancer, cut it out of your body and kill it with chemo. I can't cut out the pain and loss he feels. I can't say that on this day he will suddenly make the connection and begin to heal. We just don't know. I turn to leave his room and my heart feels heavy. I can look at Maddy and feel so much joy and peace in her. I see the light shinning in her eyes and can feel her happiness in everything she does. I look at Donovan and I see his hurt and pain. I feel his loss and his longing for the acceptance that Maddy comes by so easily. I watch him struggle to find the words he needs to express himself and the frustation he feels when he can't. I have a fierce protection for him. I liken it to a grizzly bear protecting her cubs. I take his criticisms and failures to heart and the wound cuts deep. I struggle to find a way for him show his talents. He is so into cars, planes, trains, things with engines and wheels. He is so observant and will notice everything that the average person misses. You can see the wheels turning in his head when he is checking out a machine. He wants to know how everything works and why. I can feel his excitement when he gets it and his whole face will light up. I watched him when we were at Heritage Days the other day when they were demonstrating all the old machines and tractors. He was so totally engrossed. It wouldn't take him long to figure out how the machines worked and he would stumble over himself with excitement as he tried to explain it to me. He is like a sponge and can obsorb so much information that you assume he won't because he isn't directly focused on it. I wish I knew how to apply that to everyday life. How to get that sunshine to beam from him in other aspects of life as well.
Someday. I have faith, someday.

Well after all the excitement of our trip and the concert we decided to keep it going and went to the German Heritage Days at Bonanzaville in Fargo. It is an original house and farm area preserved from the days of the Bonanza farms. There is an original sod house from the first settlers of ND, and 3 or 4 more houses dating back to the 1900's. There is a drug store, mercantile, barn, one room school house, courthouse, post office all dating back 100 years or more. They have people there that back fresh bread on a wood burning stove in a house from th 1890's. Another woman turns butter in the original Bonanzahouse, an original chuck wagon bakes cookies for the "Field Hands" on a portable wood burner in one of the first ever mobile kitchens used back then. It is really a neat place. There is a shoot out at high noon in front of the general store and the kids rode in the minature train with an authentic railroad engineer from Burlington Northern-Santa Fe. We went on a carraige ride around the village and watched the parade go by as we ate original Copper Kettle corn and stood in line for an hour for a german burger with sourkraut and swiss cheese. We had root bear floats at the soda shop in the back of the drug store and ended the day by petting the shetland ponies and feeding them grass. They were very hungry horses. One of them took part of my finger with the grass! Leave it to me to get bit by a horse! It was a good day and we all enjoyed ourselves. Even though Maddy went and sat in a 200 year old childrens chair in one of the exhibits. Turn around for one minute and under the bar she went to go sit in the chair. Thank God it didn't break! Kids are so much fun aren't they!

Well I had better go and put my legs up. My left knee went out today. Probably from all the cleaning and furniture rearranging I have been doing. Yesterday my family all came out for saurkraut and ribs, lettuce and cream, mashed potatoes and homemade-from scratch german kuchen. It was good if I do say so myself. When your dad and your dads mother-both 100ure german-tell you that your kuchen is good and have another peice or two, well that is pure baking victory. The highest honor I could be bestowed. So I am back! I can bake again! Quit laughing now, I know I am a strange breed, but I love to feel the satisfaction of making a good meal and having everyone leave my table stuffed yet yearning for me. Victory!

Monday I take Maddy to Fargo to be fitted for her gown for the Make A Wish gala coming up. She is the ambassador and I am going to give a speech with a slide slow presentation of sorts and then we have to race back to Grand Forks for her first class of ballet for the season. She was so happy to see her instructor Miss Mary that it took my an hour to pry her away from her Tuesday night at registration! Donovan started school Friday with his cousin Alexis in his class and they had a wonderful day. Austin and Alexis will come home on the bus with Donovan a few days a week so they can play and my life can seem more normal with all the kids around me again. Donny is struggling to adjust to college and it is going to be an ongoing adjustment for us all to his new schedule. But my knee is burning so I really must go. I will probably have to stay off it all day tomorrow so I can make it through Monday and then hopefully get into the dr Tuesday for a shot. Next weekend we are going to go see Donny's dad in South Dakota. He has congestive heart failure and Donny is afraid this may be the last time he sees him. Please pray for George and send your love and support Donny's way as he fears for his dad.

God bless you all and good night!

Monday, August 23, 2004 10:36 AM CDT

On to Sunday, good thing our trip wasn't that long or I would still be writting about it at christmas! I am going to finish our trip now so you may want to grab a few snacks, maybe a pot of coffee or some Mountain Dew. An ice cold Coke sounds good-I think I will get one before I begin-hold that thought!

Sunday am we got up and had ice cream for breakfast- again. I think this was Donny's favorite part of the trip! We did grab snack boxes of Cherrios so the kids would have atleast a healthy snack. It was hot and overcast and I decided since we had been at the parks for 3 days we would go to Sea World as to make sure we didn't miss a chance to see the dolphins.The first place we headed when we got to Sea World was the Dolphin Cove. It was a huge pool with a waist high, concrete side on it so you could lean over and pet the dolphins. You were to lean over, lay your hand flat on the water and wait and pray, that one of the dolphins would decide to come over and honor you with the priviledge of just barely getting to touch him. Maddy had a hard time leaning down far enough in the water to touch them and I was splashed twice, leaving me totally soaked, but didn't get to pet one right away. They would tease you, come so close you just held your breathe and then at the last minute turn and be gone. They would do this time and again, Swim just at the edge of your fingers but not close enough to feel anything but the wake in the water from thier fins. I would have stayed there all day to touch one, even if Donny and the kids left me I wouldn't have left until I had got to experience that, and I think the buggers new that! Well luckily we were there when they opened up the booth to buy food to feed them and that changed everything. Once they knew you had food they were right there and you could touch them. It was so totaly incredible. They are so soft and feel so awesome. Maddy still had a hard time reaching them so I asked the trainer to call one over for her and I assumed he would just lean her over so I ran to the other side of the pool to take a picture of her petting the dolphin and sure enough, he had the dolphin bring it's entire body up on the foot or so wide ledge around the inside of the pool and stay there so Maddy could pet him head to toe er.. flipper. I was so jealous. I had spent two hours getting dishpan hands so I could really touch one and there I was on the wrong side of the pool! By the time I got back around the dolphin was gone but Maddy was just beaming! I could have stayed there all day, I mean it-all day. But we finally pulled ourselves away and went to pet the sting rays. If you have never felt a sting ray they have to be the softest creature on the planet. Velvet doesn't even describe how soft they are. We found some dead minnows in the tank and got to feed them to. We stopped and let the kids junp on a trampoline while they were tied to bunjee cords-they are still talking about that-and then we ran accross the park to see Shamu the killer whale. To the kids it was Free Willy even though Free Willy has never been at Sea World and has this past year died of pneumonia up off the coast of Maine were a multi million dollar rehabillitation tank had been built for him after he was freed from the Mexican amusement park where he had been living at and being abused, the kids watch Free Willy over and over so for further reference we got to see Free Willy-Not Shamu. The show was good but the kids were overly tired and I knew we needed a break from the walking so I told Donny I wanted to leave. On our way out of the park we stopped by the "nursery" and got to see a brand new, tiny dolphin. I had no idea that they were so small at birth. Maddy was beside herself at the sight of the baby. Now how many people get to say they ever saw that up close?! Donny had been "suggesting" since before we ever left that he wanted to go to Daytona beach if we had time so when we got to the car I asked the kids what they wanted to do and they wanted to go to the beach and collect sea shells. Donny and I were scheduled to have our parents night out(Every parent gets a parents night out when you are at GKTW-They watch the kids-give them supper and take them to the onsight movie theatre and send you out to a free supper to be alone with your spouse) that evening and Mayor Clayton Bunny was going to come and tuck the kids into bed that night but since everyone wante to go to the beach I called and cancelled our dinner and off we went, not sure really which road to be on or how far it was but the kids needed to rest and I just wanted to sit. It started to pour as we got on the turnpike and the 30 minute trip we thought it was ended up being over an hour and it was raining when we finally got there. Now I had forsight to pack swimsuits for the kids that day but not for Donny and I so we took off our shoes and just stayed ankle deep in the water as the kids splashed in the waves. The sky was overcast and it had let up to a light shower. As we stood there telling the kids no we couldn't come in and play beacause we didn't want to get our clothes all wet, it dawned on us, we are standing on a beach in the rain-WE ARE ALREADY WET!!!!!! So with that duh-huh moment, we both waded in to our overjoyed children and played in the ocean with them. We sat on the beach with the waves crashing down on us as we searched for sea shells. We walked up and down the beach, chased each other through the waves, crawled on our hands and knees pushing away the sand in search of the tiny seashells that would be exposed as the waves went back out, leaving the beach looking like it had been littered with jewels. We tied a bag around the loophole in Donny's shorts and put all our treasures in there. Donny even found a baby lobster. After awhile when we were digging up the "jewels" we looked up and the sun broke through the clouds and the sea gulls all took flight to glisten in the evening sun. The caps on the waves were highlighted with gold and white and I understood at that moment why so many writers and artists spend so much time on the beach. Why so many poems, books and paintings are of the ocean. It was absolutley breathtaking. There was so much meaning in everything around me. Even the kids stopped their splashing and reflected on the moment. The sound of the waves crashing up on the shore, the seagulls bickering on the beach over a stale piece of bread, the sand that would be pulled out from under my feet as the tide went back out causing me to loose my balance, and the look of pure exctasy as my kids chased each other around the beach, I fell in love. Not neccesarilly with Daytona beach as it is quite dirty, but with the ocean as a whole. Now I still have an extreme and yet unfounded fear of sharks and dark water so you won't catch me surfing or scuba diving any time soon, but I definetaly want to go back to the ocean. To feel that calm I felt that evening again. We stayed until they closed the beach to cars and we had to leave. The kids were starving and we are all completely drenched. Our plan was to find the nearest Walmart-buy dry clothes and soap and go back to the public showers at the beach to clean up before we had dinner. Well we found the Walmart and I went in leaving a trail of water everywhere I went. My shoes squished when I walked and I was so cold once I felt the air conditioner on my wet body. Let me tell you-I received more than just a few weird looks. I got our stuff and headed back to the car. The kids are cold and wet now and Donny decides instead of going back to the beach he will go out to a truck stop that he thinks has a shower. Bad move. The "truck stop" is a gas station with the dirtiest, most foul smelling restrooms I had ever been in. There was no way I was even going to let Maddy potty in there let alone clean up so Donny says we will drive to the next town and clean up. Bad move number 2. He turns on to the turnpike and there is no getting off of it until you hit Orlando, an hour or so away. So here we are soaking wet, smelling like fishy water, freeezing cold, and starving. Not to mention we all had to pee!@&^&^%^$ We put our dry clothes on in the car over our wet body's and cross our legs until we finally get back to Orlando around 10pm. We stopped at what we thought was just an Italian buffet and it ended up being a very upscale,Italian Restuarante. Linen tablecloths and napkins, candle light, crystal glasses. Yeh -we were out of place but we were so tired and hungry we hit the bathrooms and sat down anyway, fishy smell and all. We ordered right away and then waited for an eternity to get our food. The kids had ordered a pizza and it was hand made and cooked over a fire in a brick oven, it was awesome! I had shrimp scampi and it was very good. By the time we were done eating it was almost midnight and we were still 1/2 an hour from GKTW. We got back to our villa, took nice hot showers and passed out. What a day. We petted Dolphins!!!!! We swam in the ocean!!!! We learned not to listen to Donny!!!!!!!!!! I am just kidding!

Intermission from the trip-I can't believe I just sent my kids out to play with thick jackets, gloves and hats! It isn't even the end of August. I can't get over how cold it is here this summer!

Anyway it was an absolutely wonderful day, despite everything.

On Monday we decided to go back to the Magic Kingdom and see the rest of that park as there was no way we were going to get through MGM studios or Animal kingdom. We were all tired and it was quite hot and sunny on Monday-well for most of the day. We went back on a few of the rides the kids really enjoyed, bought Maddy some Mickey Mouse ears and Donovan a medal. We picked up a few postcards and I got and apron. We stuck mainly to the gift shops and air conditioned areas. It was just so hot and draining. Around 5pm we took the last train ride around the park and decided to head back to GKTW. As soon as we got to the parking lot it started to pour, talk about timing. We went to Walmart and had our pictures developed and went back to our villa. I started to pack but finally gave up, as soon as I would pack something the kids would take it out again. We had to be checked out by 11am and to the airport by 11:30 so I wanted to get a jump start on it but I stopped and we went to the Gingerbread house for supper, we turned in our borrowed stroller and after one last ride on the carousal, headed back to the villa. The kids took a long bath in the hot tub and I started to clean up and do our laundry. So much to reflect on tonight as I get everyone ready to go home. What a wonderful place this is. What an incredible time we had. I pray to God the kids will remember it, that Maddy will grow up to have more memories. That things will finally turn around and get better for us. I had many thooughts like this as I crawled into that glorious bed for the last time and closed my eyes and listened to sounds of soft snores coming from the kids' room. I am so lucky!

Tuesday we ate breakfast at the ice cream palace one last time and checked out of our villa. As we headed to the airport I felt releif that we would have a day of rest today and we were going to be home soon, but I felt saddness for leaving that fantasy world. So many kids there with so many different ailments, diseases, some life threatening, some not, but all devastating. And yet the kids were all so wonderful, happy and having fun. No complaining-except by the parents- it was just incredible. We were so busy we didn't get to really get to know anyone in depth but the few minutes in line chatting as you waited for whatever, and the tired anguished looks on the parents faces told it all. But the kids all beamed, and the parents all said the same thing-It was a dream come true for them! It really was-for all of us.
Our day was pretty uneventful-well the turbulance we experienced as we left Florida because of the arrival of the 2 hurricanes-Talk about being lucky there!-unnerved me but the kids and Donny were out cold. We reached Fargo around 5:30pm and God had mercy on us and it was 59 degrees out!!!!! It felt so unbelievably good! I got off the plane and felt the cold air coming in around the bording tunnel and I just had to say THANK YOU! The flight attendants thought I had lost my marbles I am sure. And guess who was there to meet us?!?! Renae from Make A Wish! We knew she would be waiting to make sure we got home safe and sound but she had brought another suprise with her. ELMO! Now how many kids do you know get to have the trip of an absolute life time and get welcomed home by Elmo himself-for everyone out there with no recent small children in their lives, Elmo is a main character on Sesame Street and if you don't know what Sesame Street is I would assume you have never had a small child in your life at all!-and Maddy watches Elmo's world everyday. Talk about finishing with flair. We were also given back stage passes to the meet and great at the upcoming Sesame Street Live show on Friday as well as tickets to the show. The wonderful generosity never ends. We never in a million years could have done all of that for our kids. We are so truly grateful. They even had the news staion there and Maddy was on the 10 o'clock news! They had a limo waiting to take us back to our car and homeward we headed. The kids were asleep before we hit the edge of Fargo and it just felt so good to be home.

Truly Amazing, Awesome, Unbeleivable, Magical, Moving, Spectacular, Thrilling, pick any and all of these words to describe our trip. Thank you so much to everyone who supports Make A Wish, donates or volunteers for them, they absolutely make a difference in a childs life and the entire family. Thank you to all the wonderful kids at Mayville state that worked so hard to raise the money for Maddy's trip. You are all the best.

When we checked out of GKTW they gave me a book that I really paid no mind to as we were in such a hurry, but last night I was attempting to unpack the last of our bags-yes I know, it has been 11 days and we have still not fully unpacked from our trip, we have truly been to busy. Life just doesn't wait for you to recoup from vacation. But anyway, I came accross the book and sat down to read a bit from it and it is an autobiagraphy written by Henri Landwirth about his life in Belgium and then Poland, being captured and sent to die in the Nazi work and death camps, having his family torn apart and his parents murdered. The horrors he witnessed and how he survived to be freed by the American troops. And how he came to build Give Kids the World. I have just gotten into his capture by the Nazi's and his life in the ghetto's before being shipped off to the camps. He describes details of the extermination practices used by the Nazi's that I didn't know of even though I have been to the Holocaust museum in Washington Dc. His book is called Giving Life and I recommend it to everyone. A very moving story.

Well I hope you enjoyed ready about our trip as much as I enjoyed reliving it for you. I must go now and get the house picked up and get ready for Donovans Kindergarten open house tonight. Donny went to Moorhead to go to orientation before school starts tomorrow and I have been trying to catch up on phone calls and scheduling appts in between my journalling. I will write soon about the Elmo concert and much more. My love to you all and God Bless!

Friday, August 20, 2004 10:51 AM CDT

I think I left off on Friday night of our trip so on to Saturday. Saturday am we didn't rush so much to get going. We had breakfast at the gingerbread house and then the kids went horseback riding. They talked more about riding Joey and Tinkerbelle than they did anything else. After we finally were able to pull the kids away from the horses, kicking and screaming, we left for Magic Kingdom! It is a long drive through Orlando out to the parks, especially when you have 2 very excited kids chanting, "Are we there yet?!, Are we there yet?!" We finally get there and are directed to the Diamond Parking lot. We felt like roayalty already. You have to take a monorail to the front gates and the kids just absolutely loved that. You drive through the Disney resorts hotel and around the lake. We pull up to the gates and when you first walk in there are all these wonderful little shops surrounding the main square and at the end of the main road is Cinderella's castle! Oddly enough Cinderella does not sign autographs there or meet and great the public. We found her at Toon town. The first place we went was to meet Ziggy at the castle for Belle's story time. I think she was suprised that we made it! Belle had the kids come up on stage and be part of her show and it was so cute. Donovan had an "I want to do this but I am a boy and must act stinky about it," look on his face. The kids picked Ziggy a flower from the garden(which I am sure is a no-no) and one for me which we pressed in a book and brought home with us. After saying good bye to Ziggy and Belle we walked over to Fantasyland and rode the Tea cups and the Carrousal.We ate lunch and then walked over to Tomorrowland and rode the cars on the Indy Car Speedway. They let us go twice and I think it was the kids favorite ride. We went on all the rides we came accross and finally we made it to Space Mountain but Maddy was a good half a foot to short so I took Donovan and Donny took a crying Maddy back out. I felt so bad for her but had been hearing all day that it was the best ride so I wanted to go. Little did I know it was an indoor Roller Coaster and I HATE roller Coasters. When I was a teenager I was on a ride at the county fair when it broke and we where stuck upside down for an hour or more as they tried to fix the chain that had broke and was falling off the ride all around us. I had never been so scared. People were throwing up, you could hear the chains break and give way, the wind picked up and the ride started to shift and creak. Aweful-I have post traumatic stress just writing about it. So I hate fast rides and especially Roller Coasters. I did not realize what it was until we were locked in and started that slow jerky ascent to the top of the ride, little I could do at that point. BUT-It was pitch black in there with a few twinkling lights and some strobe effects and mist but I could not see anything and because I could not see how high up we were or how sharp the turns were I could not get worked up about it and I absolutely loved IT!!!! Donovan screamed the entire time but I had a blast. When we got off the ride we did a parent swap so Donny took Donovan and went back in. Maddy was still crying,"It's not fair MoM! I want to go on too!" Well just then Donovan appeared beside me and said he didn't want to go on the scary ride again so he left Donny and came back out. Well that helped settle Maddy down knowing her brother thought it was to scary to go back on. It was starting to rain so I took the kids into the gift shop-There is a gift shop as you come out of every ride- and waited for Donny. He came out and said he couldn't stand how dark it was. I wanted to go again but it was time to head over to the castle for the Cinderella Show. Of course, it was cancelled because of the rain but we were told to run over to Toon Town and we could meet and greet a number of characters at the County Bounty. It was so wonderful. They brought us back behind the scenes and we were brought in for private sessions with the characters. Maddy and Donovan sang to them, hugged them and then had all the characters play Ring Around The Rosey with them. And they were all so awesome that they did every thing the kids wanted. The kids absolutely had a magical experience with Cinderella and Pearla the mouse. The kids danced and danced with Pearla and hugged Suzy the Mouse and Cinderella talked to them. We were never rushed and it was just the greatest thing for the kids. They all signed the kids' autographbooks and we were taken then to meet the Chipmunks and Pluto, Goofy and Max, Minnie Mouse, Mickey Mouse, Tigger, Eyore, and Winnie the Pooh. All of the characters were so wonderful with the kids. It truly made the trip magical. After we said Good Bye to Mickey we went to get our stroller and it was pouring rain, not just raining, but pouring. Our strollers were completely drenched and everybody was closing up the shops and the rides were closed down due to the lightening. So we ran through the park and out to our rental car. We had planned on having supper at Cinderella's castle and then stay and watch the fireworks after but the rain cancelled all that so we headed back to GKTW. On the way I had an idea-Medevil Times is right next to GKTW and even though it wasn't Cinderella's castle it was an actual castle so I called and explained our situation and asked if they possibly had 4 seats left for the 8:30pm show, they did have seats left and they would give us all our tickets at half price! But- we needed to be there around 7:30 and it was already 7 and we hadn't even gotten back to our villa to change out of our soaking wet clothes. I tell you what, you have never seen 4 people change thier clothes so fast in all your life! It was still pouring when we got to the castle but luckily they had a canopy to stand under. We got our tickets and were taken in and had our pictures taken and then led into the great hall. We really had no idea what to expect and it was just the coolest place. It was a replica of an actual castle from the Mid evil era. The colors on the banners that hung from the rafters and the dark crimson velvet furniture was all trimmed in hand stretched leather. A trumpeter came out and a knight appeared on the balcony to greet us. The costumes were wonderful and the acting was flawless. We were escorted to our bench which seated about 20 poeple. There were 6 rows of benches in each section and 2 sections in each of the knights colored areas. We were seated in the Blue knights section. The sections are shaped as a horsehoe around a very large arena. Above the entrance for the knights and the horses is a balcony that the King and Queen sat during the show. We were then introduced to our "Wench" for the evening and informed that in being true to the 11th century there was no silverware of any kind! Thank God I brought a couple packages of handi-wipes along! They also had 2 choices of drink-Ale(Beer) or Pepsi.(OK I know that Pepsi was not around in the 11th century but they do have to have something for the kids and the very few of us it seems, that don't drink. And I noticed you could only get water in bottles at restaurants.) That's it. So my kids got to taste thier very first caffinated beverage at 9pm that Saturday night! And guess what-they loved it, go figure. I did inform them that it was a very special occasion and that they would not be getting any more Pepsi anytime soon! They started the show by introducing the King and Queen and then the knights all come out on thier Andalusion horses. Absolutely gorgeous horses. These horses have had thier lineage traced all the way back to the mid evil era and were ridden by kings and noblemen. The story is about a traitor among the Kings noblemen and how they figure out who he is by various games of skill and battle. You are served your meal continously throughout the show and they would have riders come out and perform dressage with the horses. They were magnificent. There was even a falconer that let his live falcon go and it flew within inches of your face until the falconer released its target and it caught it in mid air. Absolutely spectacular. Every so often someone would come by with something to buy. Pendants, roses, light up plastic swords, pictures, we said no to most but when the lady came by with the pictures of us that they had taken when we first came, transposed into a knights suit of armor for the boys and a Noble Womans attire for the girls, well I just had to buy them. Maddy's was free and well you see, they cut my double chin off my picture and put me on a slender body. I just had to. It was all about fantasy any way, right?!?! Donny looked like a midget in his picture but Donovans turned out very handsome. It was a long show but Donny and I were really getting into it so I broke down and bought the kids the light up swords to help entertain them and to help burn off some of the caffine. Donovan was on my left and Maddy was on my right. I leaned forward on the table so I could see and the kids battled it out above my head. Maddy only accidentaly wacked the guy next to us a few times and he said they were having to much fun to make them stop. Pretty nice guy! He did move over a little though to give our ametaur swordsmen some extra room! It was almost 11pm when the show ended and we were led back out into the great hall. The King and Queen were "Knighting" people and posing for pictures so we asked if they could pose with the kids. Donovan didn't want to but they took Maddy and had her kneel down on a pillow and the King placed his sword on her shoulders and dubbed her Princess Maddison! They gave us a free framed picture of that and we took 2 very exhausted children back to the villa and tucked them in bed. I kissed my little princess and she so sleepily told me that she only wanted to be my little princess, otherwise she was just Maddy. I kissed her again and she was asleep. I covered up Donovan and kissed his forhead and he was already snoring. Such a wonderful day. I could never have dreamed we would get to do so many things. Had the park not closed due to the rain we would never had gotten to see the show at Medevil Times and everyone had so much fun. The Characters were awesome, the horseback riding was heaven for the kids and making new friends every where we went was just the best. We only had one day left at the parks and there was no way we were going to get to the rest of Magic Kingdom and then see Animal Kingdom and MGM studios all in one day and there was rain forcasted again for Sunday so we decided to go to Sea World on Sunday, skip MGM and Animal Kingdom and finish going through Magic Kingdom on Monday. Tuesday we needed to be checked out of our villa and at the airport by 11am so we wouldn't have time to do anything at all on Tuesday.

What an awesome day-Thank you so much Make-A Wish!

I will continue on with Sundays adventures later. Right now I am going to try and figure out how to size my pictures, again, to see if I can't get more on. I don't know why but when ever I try they come out huge anyway, so we will see how I do today. Our love to you all and Please remember to check Maddy out on the Tumbleweed site-the link is below-as she is a featured child this month and please keep leaving the messages in the guestbook. they really do mean so much to us!

Tuesday, August 17, 2004 3:52 PM CDT

Yes, I know I just left you all hanging in suspense as to day 3 and so on of our Magical Disney trip. It was not intentional I assure you. First of all I must say congratulations to my Marge on the birth of her daughter on the 13th. Wasn't it so nice of her to wait until we got home to have her?!?! What a friend! Jayden Luann Jean-sorry Marge if I spelled it wrong-weighed in at 8lbs 4oz and 20 1/2 inches long. We are so happy for you!
Maddy and Donovan had their full school physical on Friday and it included shots. Donovan needed a chicken pox shot and Maddy needed her last whooping cough and polio vaccine. Do you ever have moments were you wish the clinic had a back door so you could drag your limping, screaming children out without having to walk through the lobby? Now granted I realize shots hurt, but you would have thought my kids had been harpooned the way they were carrying on. It was bad planning on my part to schedule an appt. for a few days after getting back from such a long trip, but Maddy couldn't start school without her final vaccines. They were so overly tired on Friday it just wasn't even funny. For anybody. but I am getting ahead of myself so I will get back to our trip. You may want to grab a snack now and a cup of coffee!

Now on to Thursday. When we got to GKTW we were given 2 day passes to Universal studios,3 day passses to the 4 Disney parks-MGM Studios, Animal Kingdom, Epcot and Magic Kingdom, and a 1 day pass to Sea World. Since Maddy's Princess Breakfast was at Epcot on Friday we figured we would start at Universal Studios. So off we went bright and early,well first we had breakfast there as Perkins restaurant caters all the meals for GKTW and Thursday morning they were having a party to celebrate serving thier 2 millionth meal there! What a way to start your day but with a big party, cake and ice cream and a balloon drop! Mayor Clayton Rabbit was there and Minnie and Micky Mouse. We were given a coupon to have a free photo taken with them and the kids got little gifts as we left, anyway back to the park- it takes about an hour to drive through Orlando and to get out to any of the parks from GKTW. Universal is the farthest one out so it took a little longer. We got to the park and went to The Cat in The Hat park. They had the funnest rides for the kids I think. We went on one ride that you get into your flying elephant and you can move it up and down as it goes around, well it has a flower that sprays out water as it passes and we got wet. Which to me felt so awesome as it was so hot and humid that your clothes just stuck to you and you could feel the heat on your skin. Now Maddy was not so happy about it and for hours after I still heard-,"Mom, that wasn't very nice of you to take me on a ride that got me all wet, you never asked me if I wanted to get wet and that just makes me so very upset, I didn't want to be wet today mom!" The whole trip we never went to any water parks as Maddy did not want to be wet-with the exception of Sunday, but I will get to that later. Thank God there are plenty of inside rides to go on and sit so we were able to get out of the heat and rest often. We were also given buttons at GKTW that let us go to the front of the lines or in the Fast Pass lines-TIP OF THE DAY-If you ever go to Disney, spend the money and get a fast pass ticket, it is the difference of 2 hours standing out in the heat and the sun to 10 minutes until your butt hits the seat of the ride!-So we did not have to stand outside in the sun getting cooked as most people did. Most of the rides at Universal consists of sitting in a moving car that would slowely take you through a series of rooms that had moving sets and you would go through fog and have mist sprayed on you. The best were the 4-D theatres that had moving theatre seats and like in the Shreck one the dragon sneezed and you got sprayed with water or spiders came running at you and you had air blown on your legs and it did feel as if something just ran up your leg! When Gingy the gingerbread boy come on they sprayed cinnamom scents in the theatre. It was really cool. The kids would keep trying to grab all the things that seemed to be right in front of them because of the 4-D effects. There where quit a few of those theatres. We walked alot and drank gallons of water. The kids favorite ride was the flying unicorn roller coaster which I am pretty sure Maddy didn't meet the height requirement for but they let her ride it twice with no question. She loved it, I do not like roller coasters so dad went on that one with them. We decided to go back to the GKTW as every Thursday night they have christmas and Santa and Mrs. Claus come and pass out gifts. We were ready to leave the park by then so we headed back and made it just in time for the "Snow" to fall-it was a bubble machine in a tree but in the picture it really does look like like snow! The kids got books, t-shirts, stuffed animals and we made some tree ornaments. We then went to the ice cream house and decorated sugar cookies. By the time we got back to the room we were all ready to drop! And did you know that while you are gone during the day the staff at GKTW comes in and leaves gifts for the kids on the table. So after all that fun and excitement we came back to our villa to find more gifts!We had quick baths and into that glorious bed I crawled. Tomorrow was our big day at Epcot to have Maddy's princess breakfast and to see Sleeping Beauty at last! I was nervous about not getting up in time and luckily for us all I have an internal clock that will wake me up 15 minutes before the alarm is set to go off if there is something majorly important I need to be up for! There was another bad storm that night that knocked out the power so our alarm clock was not even on! I woke up in time and we all got ready to go. All the walking on Thursday threw my knee out so I was barely able to move it on Friday. I could not bend it enough to get it over the the tub to take a shower that morning. So when we got to Epcot I rented one of those motorized carts. I never felt so stupid in my life riding around in that but it saved the trip for me. Staying off of it Friday enabled me to recover enough to walk the rest of the trip so it was well worth it. Maddy was so excited she could hardly wait. Her breakfast was at the Castle in Norway at Epcot and it was quite good. They serve you a large skillet and have a type of chocolate cinnamon bun with fresh fruit. The kids ate the sausage and the fruit-I swear that they are on some childrens form of the atkins diet as they eat meat and salad and fruit, with the exception of Mac and cheese and pizza-Donovan also only eats hot dog buns with ketchup-no hot dog and Maddy only eats the hot dog with no bun - have I ever mentioned before my children are strange?!- anyway so the kids consumed thier daily load of cholesterol for the day and waited for the first glimpse of the princesses to arrive. We did not know which 4 would be there and we could only hope Sleeping Beauty would be one of them. I do believe Belle was the first to arrive and she went around to every table and signed the autograph books that they had given the kids and the kids hugged and kissed her. She was so awesome! The next one was Snow White and she had been at GKTW the night before so Maddy and Donovan were so excited to see her again, she gave them big red lipstick kisses and spent extra time with the kids. Then came Jasmine and Donovan really liked her, she added to the lipstick kisses on their faces and Mulan finished them off! All of the characters were so great with the kids and made them feel so special that Maddy didn't even realize that Sleeping Beauty wasn't there until after we left the breakfast. We were told she would be by France that afternoon so we went back out to the front and left a living legacy for the kids. They take your picture-we had the kids pose together-and then they engrave your photo with your name and when you where there in granite pillars in the front of Epcot. We thought that would be so cool for the kids to go back there and find thier faces carved in stone. Aftwer that it was a slow going day. The cart did not go very fast and Donny felt as if he had had a heat stroke. We went on a few rides. Our favorite was the test track where they put you in a car and run you through a test dummy crash course. It was a pretty fun ride even though at the end it whips you outside on like a roller coaster track where you are doing about 90 mh side ways on the track. Needless to say the kids loved it and they let us stay on it to go again. We made it to the center square to see Sleeping Beauty at last and I must say the young woman they chose for the characters are pretty close to the animations. Belle was there also and Maddy was so tickled to see her again. We took our pictures and Maddy talked to her for awhile and then we left. That was all she got to see of her. But the other characters we met through out the trip made it so wonderful that Maddy never noticed. The little countries at Epcot are really neat and our favorite had to be Italy. They have stations at most of the countries where the kids can stop and do a craft and the craft that day was to decorate a mask and then at every country you went to they would stamp the mask and add another decoration to it. So as the kids worked on their masks I talked to the young woman that was working there and did you know that to keep it all authentic they have an exchange program that brings people from each of the countries over to work at Disney at Epcot in thier countries in exchange for a 15 month visa and I believe they earn college credit also. So every little country in Epcot all the workers are from that country and all the products and souveniers they sell are authentic from that country. They even had at Germany and a porcelain painter for Kimmel porcelain. There are only 50 master painters that can paint for them and it was just really neat. And through out the day we would see the characters in their countries and the kids just really got into seeing them, Jasmine and the Jeanie were in Morroco, Mulan and the dragon were in China, Belle was in France and I can't remember where Snow White and Dopey where. We went to Africa and they had the kids play drums as they sang and danced and then taught the kids how to do an African dance, Maddy loved it, Donovan was more interested in the old truck they had as part of the exhibit, he's a car boy all the way. We only made it through half of Epcot and since it was late and it hadn't rained we decided to stay and watch the light show-I am so glad we did. The last ride we where on the workers told us the best place to watch the light show was on the bridge by Mexico so we headed over there at 8pm and parked our cart and stroller on the bridge to save our spot and went to the cantina for supper. Another strange fact we learned-you can leave your stroller parked outside of a ride or any where at the parks for that matter with your souveniers, backpacks -whatever-go on a ride, leaveing it sit there unsupervised for an hour or more and when you come back, everything is still there, untouched! I always took my purse with me every where but we left everything else in the stroller and nobody touched anything-amazing-you couldn't do that up here!, anyway-As we were eating 2 young girls came over to us and asked the kids if they would like to have a glow in the dark necklace, it was so nice of them, the kids hugged them and thanked them and we went back to the bridge. I was talking to a couple from Whales that had been there for 3 weeks!- When all of a sudden this very energetic young woman that had been standing next to us jumps up and starts running around and my kids start chasing after her. She lets them tackle her to the ground and evidently their glow necklaces where leaking because when they poked her shirt with them she started to glow in the dark and it looked like she had just been slain! The kids hog piled her and then she jumps up again and starts running so the kids take off again. They tackle her down and hog pile her. She starts to yell for help and the paramedics come! To funny. He had been watching her play with the kids and just wanted to introduce himself and offer his help if we needed anything while we were there. His timing could not have been more perfect. So that is how we met our new friend Ziggy and the kids are still talking about her! You totally made the trip that much more special Ziggy, Thank You. The light show was awesome, just fantastic and after the show I was able to talk to Ziggy alittle and found out Disney also does a college internship that you can earn college credits and help with tuition in exchange for working there. That is so cool. We made plans to meet Ziggy the next morning and went back to GKTW absolutley exhausted, hot and sticky. A quick bath again and back into that wonderful bed. Tomorrow we go to Magic Kingdom and the Heart of Walt Disney World! I think I am as excited as the kids!

Well it is past supper time and the chicken just will not cook itself so I will try and continue our trip on tomorrow-I have 3 appts so don't hold your breathe, but I will try!

Emily comes home tomorrow I think from her Make A Wish trip and I hope she had as wonderful a time as we did. We are praying for a safe return home for them all. Emily is the one in the picture with the short dark hair and the white long sleeve shirt. I will put new pictures up after supper.

Our love to you all and PLEASE VISIT THE TUMBLEWEED SITE_THE LINK IS BELOW_ AND SEE MADDY AS SHE IS A FEATURED CHILD ON THIER SITE THIS MONTH!!!!! Thank you, thank you for all the messages in the guestbook it is so wonderful to read them, please keep signing when you stop by to check on Maddy!

Wednesday, August 11, 2004 9:05 AM CDT

WERE BACK!!!!!!!!!!!!! What a trip! Absolutely Magical. Make A Wish-We Love You!!!!!!!!!! And everyone else who helped to send us on Maddy's trip. It was AWESOME!. I don't even know where to begin. OK-maybe the beginning would be a good place.

Tuesday, August 3rd,2004- We started our trip with a relaxing afternoon in the pirates lagoon pool at the Holiday Inn courtesy of Make A Wish. The kids had so much fun on the waterslides and sitting in the hot tub. Mom and Dad rather enjoyed the hot tube too! At 6:30pm we where given a great suprise when the crew from Make a Wish showed up with pizza, gifts and a cake to send Maddy off in style. The Sherecks were there to suprise Maddy and Lindsey looked so beautiful. She had donated her long, thick, beautiful blonde hair to locks of love to have made into a wig for a child who needs one and can't afford one. What a wonderful thing to do! She was missing her long hair but she looked absolutely beautiful with it short. It was wonderful to see them again. They are such a great family. Our second suprise for the evening was Emily and her family were there to send us off as well! Emily has so much hair now and looks awesome-AND CLEAR SCANS!!!!!!! We are so happy for you Emily.It was absolutely wonderful to get to see them again! I think Maddy loves Emily's dad as much as she loves Emily! Emily will be leaving on her Make A Wish trip to Hawaii!!!!!! the day after we get back so we will be praying for blue skies, good weather and a safe trip for them. I can't wait to hear all about it when they get back!
After the excitement of the party and all the swimming I figured that the kids would fall right to sleep-Get real mom-they had not slept for 2 days before Tuesday and they were wired for sound until about 11pm and then Donovan started having leg pain and nightmares and Maddy was taking in her sleep-actually giggling in her sleep -this is so cute-She was dreaming that Emily was tickling her and chasing her around and she was giggling and talking to her! I think we got maybe 2 hours of sleep total and where up plenty early to be ready for our Limo ride to the airport! The kids thought it was so cool! Maddy of course made new friends at the airport and the kids got thier own set of "wings". They were so excited to be going and were a little antsy to get on the plane but both of them handled flying like a pro and had a great time. Our first flight was delayed and hour so when we got to the cities to change planes we literally had to run from one airplane to the next and made it by only 3 minutes! Whew-I got tired just thinking about it! We all napped most of the way down to Florida but because our plane was late we never had time to eat so by the time we got on the ground we where all starving. A volunteer from Give Kids The World was there to great us and we quickly got our car and where on our way! And wouldn't you know-GKTW is located just a few blocks behind a Walmart! What luck!!!!!! Anyway-we pulled up to the gated community, where let in and immediately sent over to the ice cream shop for banana splits and hot dogs. MMMMmmmm it sure hit the spot. We checked into our immaculate 2 bedroom, 2 bathroom villa with a kitchen, dining room and living room, with a washer dryer, dishwasher, and whirlpool tub-not all in the living room !, it was beautiful, and the table in the dining room was covered in snacks and presents for the kids and I have to spend a minute talking about the bed in our room. It came up to my waist so you had to climb up into it but it was like sleeping on a cloud. It was the softest, most comfortable bed I have ever laid on. I didn't even need to take a sleeping pill. I laid down and I was out! Pure heaven I tell ya, well back to our first day. It is still Wednesday the 4th,2004. After we checked out our rooms we went to explore GKTW. It is truly incredible. They have an arcade house where all the games are free, mini golf, a theatre, a carousel, a water park, a pond you can go fishing in, The Ginger bread house that you can eat your meals in all catered by Perkins restaurant, the gingerbread house is lined with dolls-thousands of them from antiques to new. It was awesome. There is a castle that is full of toys,crafts,games and a tree to climb. Every childs dream come true really. There is an authentic Italian train that gives rides around the village and all the little villas are different. It is the most amazing place. There is something going on there all the time so if you can't make it out to the parks, you would never feel like you missed anything. They gave us an extra stroller to use for Donovan at the parks and a video camera for 2 days to record Maddy's princess breakfast. We ate a late supper at the gingerbread house and the Mayor-Clayton Bunny came and Maddy was so thrilled with him. Donovan was like-"Mom-it's just a guy in a costume!" I was so shocked, it's like-so when did you grow up when I wasn't looking and quit beleiving?! I told him that everything was magical there and he should never be to sure about anything. Well then he figured he was missing out on something and went and gave the Bunny a hug too! Gotta love kids. We walked around alittle bit more and then headed back to our villa for a bath and bed. Oh that wonderful bed! And that was the first 2 days of our wonderful trip. I need to go and sort some laundry and take a nap. I will add more later!

Monday, August 2, 2004 11:08 AM CDT

Hi Ho, Hi Ho it's off to Disney we go!!!!! (Whistling the rest of the tune-please join in!)
Tomorrow we leave for Fargo and our day of rest and swimming and a little send off from Make A Wish and the wonderful Sherecks that donated money for Maddy's trip. And then we will be treated like royalty as a limo picks us up for the airport at 6:45am-a very unroyal hour!- and wisks us off to the airport. We will change planes in the cities and we should arrive in hot and steamy Florida around 2:30pm. Donny has been checking the weather down there and it is hot, hot and humid. The heat is alright if the humidity isn't high, but what else should one expect from an all coastal, swampy area?! So mom will have to rest often and shower more and we will all have a blast! I am actually starting to come down off my stress high of the last few weeks and am getting excited. I am pretty much all packed and my plan of less is more , well it just didn't happen. I am not one of those people that can throw a change of clothes and some deoderant in a bag and take off for a week. I am positive I didn't pack the kitchen sink but I do have everything you would need to clean it! Some habits just never die. I did manage to get it all down to 1 suitcase per person and 1 small carry on, plus the stroller and the carseats. Not to bad I don't think. I had read that it is wise to have the kids in carseats on the plane and we of course will need them once we get down to Disney and get our rental car. Neither one of my kids have reached the hieght or weight requirements to get out of them yet, and the stroller, well with Maddy still having episodes of fatigue and joint pain from chemo we thought it best to bring her stroller that way we have it in the airports and it is cushioned so if she falls asleep in it she won't wake up with a back ache. I will of course take a couple hundred photos and will start posting them when we get home! I can't believe we are actually going to get to go on a real vacation! Ok I am excited!!!!! I will update when we get home, we get in around 11pm to Fargo on the 10th, and then we have appts on Wednesday so probably on the 12th I will be able to start telling you of all our wonderful adventures!

Make sure that you all go to www.tumbleweedfoundation.org as Maddy is a featured child this month! If you know of a child that you would like to be featured on their website there is an application on the home page. They share the story's of kids battling childhood cancer and disease and people send them mail and good wishes. I will add the link to the bottom of this site. I know you all know the story already but the pictures are cute and it is a nice website so please go check it out!

Well I suppose I had better go and throw in the last few loads of laundry, clean the fish tank, wash the floors and do all that last minute stuff before we get ready to leave tomorrow. I can't go on vacation and leave a messy house either. I know, I know, I am just to wierd, I'm working on it.

We continue to pray for all our caringbridge families we have gotten to know over this last year, Pastor Seigle for his continued recovery from surgery, all the families fighting the battle of Ewings, we pray for Lance and his familiy, Isaiah, our family and friends.

When you wish upon a star
Makes no diference who you are
When you wish upon a star
Dreams come True!
Thank You to everyone who helped in Making Maddy's dreams come true! WE LOVE YOU ALL!!!!

Pray for a safe and relaxing trip and we will be back all to soon!

Hi Ho, Hi Ho it's off to Disney we go-Whistling-Hi Ho, Hi Ho!

Saturday, July 24, 2004 7:45 PM CDT

I don't know what in the world is going on with this site. I am going to try a breif message change to see if that helps.

I don't know why but that seemed to do the trick.

Well today we had a spontaneous and fun day. We packed alittle for our trip, we went to the street fair with our friends and then spent the afternoon at the water slide and had a blast. The only downside is the bad migraine I ended up with after supper. I took a migraine pill and threw up. I was making a strawberry pie to take over to my brothers to enjoy as we all watched the fire works tonight and the kids wanted to ride the horse, but I just got sick, not on the pie, of course. I am waiting until I can put the kids to bed so I thought I would check the guestbook and see if there were any new messages for us, disappointedly no, but then I say what was going on with the home page and thought I might as well try and fix it. Luckily for me I got it on the first try as I don't think my brain could have handled 2 attempts, or anything that involved any real brain usage, I am typing this while trying to hold ice on my head and Maddy thinks I am sooo silly. I wish I felt silly. I am as happy and as releived as can be that Maddy's scans are clear but life just keeps taking these little jabs at us that keep our stress level high and our tolerance low.

On the brighter side we recieved our packet with our airline tickets and our itinerary for our trip today. It is in only 10 more days! I am getting much more excited and the kids are so frustrated that it can't be tomorrow. I don't blame them. I wish it could be tomorrow also.

Well Donovan is looking for me and Maddy told him I ran away so now he is freaking out. We just had supper- you know, the one they wouldn't eat even though it was hotdogs and chips-I know, real nutrition, and now he is starving and wants a snack. Somedays I wish I could just stick my head in a snow bank! God that would feel soooo good right now.

Please sign the guestbook if you stop by to check in on Maddy. It really does mean alot.

Have a great weekend, God Bless and Good Night!

Thursday, July 22, 2004 8:35 PM CDT

This will be short but sweet. MADDY"S SCANS ARE CLEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It has been, needless to say, a very long day. Maddy had to have 2 pokes. She needed to have an IV for contrast with the CT scan and the first IV wouldn't flush. God, does that sound familiar?!?!?!? She screamed bloody murder and was very moody for the rest of the day. You can't blame her though. IV's suck. The high light of our day (besides the scans) was getting to go have lunch with Becky, one of the volunteers that would come up and spend hours reading to Maddy and keeping me company. It was so nice to see her. We will have to do that again real soon.

But now that she is done with scans and everything looks good I will be crashing. Hopefully I will be able to get some good sound sleep tonight.

With that said, thank you everyone for your prayers, and good night!

Monday, July 19, 2004 8:58 PM CDT

I should have stayed in bed on Friday. First I found out about pastor Siegle and then later that day I found out that a little boy Maddy and I had gotten to know up at the hospital relapsed with brain cancer. He had a small tumor removed from his brain last week and that is all that I know. Please say prayers for Lance and his family as they try and decide what to do now. I feel so horrible for them. And it scares me to death with Maddy's scans coming up on Thursday. Maddy has been very clingy the last few days. If I walk out of the room and leave her sight she will scream out for me and start to cry. This is not usual behavior for her at all. Maybe during chemo but not now. I asked her if she was scared to go back to the dr's and have scans. She says no that she is looking forward to seeing all her friends, but I think she is just trying to put up a brave front. It is hard to say. She did see me crying on Friday and that could have upset her and scared her. I just hate this. I want it to be over. I am so burnt out on the fear and so burnt out on being burnt out.
I started to pack a few things for her Make a Wish trip but then I thought what if she has bad scans, she won't get to go. Then I had to feel guilty for having those thoughts. There is no easy way to live a life that involves cancer. It is so hard to stay strong and positive all the time. I wish I could be more like Maddy in that regard and just be so sure all the time that everything will work out. If she didn't complain of her knees hurting or her back hurting or headaches than maybe it would be easier. I don't know. She is also getting to be very fuzzy, and not just on her head. She has dark black hair growing all over her back and shoulders and her hairline comes down to her eyebrows below her temples. She is even getting very light colored side burns. The poor kid had no hair for a year and is now turning into a monkey! I hope this is all a temporary thing. Has any one else heard of this, this accelerated hair growth? If so please let me know what you were told about it. I will certainly ask her dr about it on Thursday. I know this is short but I am really tired tonight and just want to cuddle up with Donny and fall asleep watching one of his boring documentaries. Something mind numbing like A day in the life of a train. It happens to be my sons favorite movie, but what can I say. Please keep Maddy and Lance and Pastor Siegle in your prayers, also pray for Kody who has some bad looking moles on his back that could be skin cancer. He has been through so much. We all have. You are all in my thoughts and in my prayers. God Bless and Good night.

Friday, July 16, 2004 11:39 AM CDT

I just found out from my sister today that my Pastor that I grew up with has just had surgery to remove a tumor from his pancreas and it is cancer. He has also gotten an infection and it has turned sepsis. He is slowely improving but is on a ventillator and heavily sedated. He is a wonderful man and was the one to marry my husband and I, he batised my son and held Maddy the day she was born. When I think of him, I think of a caring and compassionate man who touched my life and gave me the foundation of my faith. I am so shocked and saddened by this news. I am trying to type this through my blurring vision as the tears just keep coming. I hate this disease so much. I HATE IT!!!!!!!!!!!!
I do not understand why we all have to suffer so much in our lives. My heart just breaks for what his family is going through right now. I wish that I could do or say something that would be of some comfort to them but I know from experience there really is not. Please, if you come to this site and pray for our Maddy, please pray for our Pastor Siegle. I unfortunately know a bit about pancreatic cancer and he is going to need all of your love and support. I know I never do this, I never usually think this way, but my heart is screaming out,"Why God, why someone who loves you so much and dedicated his life to serving you?" Did I ever mention how much I hate this disease?!?!?!?
I can not stop the tears and now Maddy has come in and is upset that I am crying. I need to go and hold her close to my heart right now. But please pray for Pastor Siegle. You can go to his website at www.caringbridge.org/mn/raysiegle and get further updates on how he is. Love - Holly

Tuesday, July 13, 2004 6:53 PM CDT

Sunday marked the one year anniversary of the discovery of Maddy's cancer. Her anniversary for diagnoses is tomorrow. I have spent alot of time in reflection the last few days of what this last year has meant to us, done to us. I can't even begin to explain the myriad of emotions I have experienced. The trauma I have relived. I have also been brought to tears by the thought of all the love and generosity shown my family. I have been asked so many times how I am lately and I really don't know what to say. I have so much to do, so many things to plan for, so many changes to make. I amm totally overwhelmed at moments and then I feel like I could take on the world. I have had migraines like I have never had before, stomach upset like never before. I feel like my body is totally revolting over this last years stress overload. I am worried about alot, to say the least and I am just very tired. I also feel an urgency to start doing things, everything, all at once it seems. I am trying to find a direction to take my life, my family, and I just feel like I am lost at the crossroads. I know I need to take things slow, give it all time to come back and feel normal again. But time has a whole different meaning now. Time is more valuable than gold. Time is all we have with each other. I don't want to waste a moment but the days seem to just slip away. Everything seems to move so fast. I remember sitting up at the hospital watching every minute tick away on the clock, watching the chemo drip into her, watching the color fade from her skin, the sparkle leave her eyes. Time seemed to have come to a complete stop. It wouldn't go by fast enough. I wanted the chemo to be done with and the hospital stays to be over with. I paced the halls waiting for the next day to come and then go. I never really believed that we would actually ever arrive at the day that we would get to go home for good. That the days would fly by again. But we have reached that point and it has taken me by suprise. It is time for her 3 months scans soon. I am scared. I have a lot of questions that I need answered before I can let go of some of my concerns. And I am not always patient enough. Big suprise there, huh?! It all goes back to the time thing. Never enough of it, and I don't want to waste any of it.

Well anyway, on Sunday we went to church. The sermon was about being a good samaritan. I have to say I had to fight back the tears, not only from the powerful way in which the sermon was given, with such feeling and passion, but in the many ways we have been affected by good samaritans in our lives. I try to be the kind of person that will always cross the road for someone in need, but there have been times when I have just been so tired or so in need of rescueing myself that I have not been able to. I can't even count the number of times that I have wanted to reach out to someone and help them but could barely find the strength to help my self and my family through the day. And there have been so many samaritans that have crossed the road to help us up when we have fallen this last year. Many people that I never would have expected it from and others that I was sure would never let me fall in the first place were no where to be found when I needed them the most. It has been a struggle not to become bitter. I think the reason I am not is because of all the random acts of kindness we have experienced. It seems when I would really be doubting life, people and god, that somebody would do something so totally unexpected, so completely unselfish, that I couldn't help but be jolted back into a better frame of mind. I guess it was a fitting sermon for me at this time. I could really relate and apply it to my life right now.
After church Maddy wanted to take 3 of her most favorite people out to lunch to celebrate and I was all to happy to oblige. They happen to be 3 of my favorite people also. After lunch we went to spend the rest of the day at Auntie Pam's. She was having a birthday party for her foster daughter and I felt the need to see Pam as she was there with us at the hospital that night a year ago. I needed the closure. I needed us to all be together again but in a different and more positive enviroment. Doing something to celebrate life instead of fearing the end of it. It was a very good day. I think staying so busy helped keep my mind from going on total overload and I didn't relive as much of the trauma as I had thought I would. Although I could be having a delayed reaction too. Nothing suprises me anymore. I still feel like I am in shock and that this is all a really bad dream. I know it's not but it all does seem surreal at times.

One thing that I know is real is Maddy hanging off the back of my chair doing everything she possibly can to annoy me into getting off the computer. She isn't talking directly to me but is talking to herself and I can not concentrate at all. Gotta love kids don't ya?! Her strategy is working and I should go read some more stories to her and Donovan before bed. Tomorrow is the last day of vacation bible school and I have to make sure we are all up and dressed and fed and out the door by 8:30. Have I ever mentioned before that I am not a morning person? So the fact that we have made it 2 days in a row is a miracle in and of itself. We also have ballet in Grand Forks tomorrow after bible school gets out so I need to get to bed before midnight tonight. Well I am going to try anyway.

Please continue to keep Maddy in your prays in this next year and always. Thank you to all the good samaritans in our life. You have ment the world to us. I just hope someday I can repay all the acts of kindness in one way or another. God Bless and Good Night.

Saturday, July 10, 2004 7:48 PM CDT

How do you all like the new Banner?!?!?!? Thanks to our new friend Helen. I love it and so does Maddy and Donovan. The lightening bolts are so cool! And the picture of Maddy from her Relay for Life survivors lap is just perfect. Thanks again Helen. If you would like to request a banner from Helen you can get to her site through the link in Maddy's guestbook. Just click on The Banner Site.

Well the headaches/migraines persist. A combination of stress and the most god forsacken weather a person could ask for. Although if you ever asked for 100umidity, over cast skies, 80-90 degree temps and an infestation of blood sucking, unrelenting flies, well then I think we should form a possy to hunt you down and string you by your toes from the nearest light pole! It is just hard to breathe. Hard to move and hard to function. I went out this a.m. to pick my strawberries and the flies were drawing blood through my pants! Even through my denim jacket! I couldn't believe it. I said to hell with the strawberries and went inside. So if anyone out there wants to donate a few pints of blood to the flies and pick some strawberries-Be my guest. I am done. There are so many berries out there I can't do anything with all of them anyway. I was going to can them into jam but it is not recommended the first year out of treatment that Maddy eat home canned food and strawberry jam loses it's appeal after a year in the pantry, unless you use a preservative and I don't. I picked 10 quarts today and that was only half of one bed. The berries are huge but need to be picked and eaten. I will freeze some, I suppose make some more pies, and I don't know about the rest.

We finally got our replacement window yesterday and got it in today. Well Donny and my dad and brother did. I took the kids to a birthday party for my oldest foster daughter's son. She turned 18 last spring and we have been so happy to have stayed in touch with her. The kids think of her as their sister and she will always have a very special place in my heart. I would adopt her in a minute if I could. Her son turned 2 this month and he is the cutest little boy. We all had a good time and the kids are good and tired tonight! Bonus for mom! I am trying to get everyone wound down early tonight so we can get up for church tomorrow. Vacation Bible school starts on Monday and I am volunteering for the week with that. The church has done so much for us, so I try to help with what I can in return. Maddy is really excited. Donovan has summer school one of the days but will enjoy the other 2 days. I think it will be fun, although I have no clue as to what I will be doing.

I can hear the thunder booming in the distance, the sky is turning gray and I can feel the heaviness of the air weighing on my chest. The flies are frantically flying at the windows and the birds have all become still. A storm is coming. The kids wait by the window, peering out in anticipation of the first raindrops to fall. Our german shephard pants heavily as he paces back and forth in front of our garage. He hates the storms. With every boom from the sky above his body shakes. He ducks as if somebody went to strike him. The dogs in the kennel all hang thier heads out from thier hole in the shop, wet from each others slober as they pant and drool, waiting for the relief that the cool raindrops will bring. I sit and type, the sound of the thunder revirbirates through the trees around our house. We all wait for the all too familiar sound of the rain beating down on the roof. The pinging as the water hits the glass on the windows. The comforting feeling a person gets from being inside, safe and dry. Donny has gone down to watch the yard from his chair in the den. The green is so bright in the grass and the trees. It almost seems unnatural. The silence in the yard is so eerie. I can see the sparrows and the morning doves perched on thier nests, protecting thier babies from the impending weather. But they make no sound, as if to chirp would draw the storms attention to them. And it is so green.

Now back to reality. I wait with anticipation of the rain as the humidity will drop and then maybe my headache will subside alittle. Thank god that the window got put in and sealed today. Hopefully sealed well at that.

I recieved some trivia bits the other day in the mail and I enjoyed them so much I thought I would share a few with you.

1. Did you know that it is impossible to lick your elbow?

2. Coca-Cola was originally green.

3. Golf stands for:
Gentlemen Only- Women Forbidden

4. What do bulletproof vests, fire escapes, windshield wipers, and laser printers all have in common?- They were all invented by women!

5. What is the only food that doesn't spoil?- Honey

6. In Shakespeares time, mattresses were secured on bed frames by ropes. When you pulled on the ropes the mattress tightened making the bed firmer to sleep on. Hence the phrase,"Good Night-Sleep Tight!"

7. In English pubs, ale is ordered by pints and quarts. So in England, when customers got unruly the bartender would yell at them to Mind your pints and and quarts and settle down, it is where we get the phrase,"MInd your P's and Q's!"

8. Many years ago in England, the pub frequenters had a whistle baked into the rim or handle of their ceramic cups. When they needed a refill, they used the whistle to get some service."Wet your whistle" is the phrase inspired by that practice!

9. It was the accepted practice in Babylon 4,000 years ago that for a month after the wedding, the bride's father would supply his son-in-law with all the mead he could drink. Mead is a honey beer and because their calender was lunar based, this period was called the honey-month... which we know call the honeymoon.

10. 75f the people who read this will try and lick their elbow!

Thank you to all who responded this last week in my desperate hours. Some days it just gets to hard to handle all the stress, all the thoughts, all the demands. I just have to lose it alitle to get it back if that makes any sense. And the migraines don't help at all. I can hear the rain start to fall so hopefully the barametric pressure will change and I will get some relief there. I keep you all in my heart and in my prayers. Good Night!

Wednesday, July 7, 2004 3:20 AM CDT

Well it is 3:30 in the am and I cannot sleep, again. Night time is an aweful time for a persons mind to wander and since you are so tired you just cannot control where it goes. Maddy was having a snack at the table after supper and just fell right over off of her chair. It is not the first time this has happened. She just started to cry and couldn't stop. I hate cancer so much. With every fiber of my being I despise it. To see her laying on the floor helpless to get up and crying so hard. My heart shattered for her. She couldn't explain why she just fell over and it really scared her. It scared us all. She stumbles alot and it seems that maybe she is having a neurological effect from the chemo. I will ask her onc about it in 2 weeks when she goes in for scans. Everyday I battle the fear and what if's. Night time is my enemy. Every thing slows down for the day and the demons in your mind come out and start to torment you. I have been having nightmares again, I can't sleep and I have migraines so bad my body shakes. I have been sitting here with ice on my head trying to stop the pain so I can go lay down without wanting to throw up. My migraine pills are not working anymore, neither are my sleeping pills. I only took them 5 hours ago and I am still awake. Every time she gets a headache, complains of pain in her legs or tells me her side hurts just turns my insides to mush. Every once in awhile she will come and ask me for Tylenol-which she absolutely hates to take-and then I really worry. She looks so good and is still full of life and energy, but then again, she was when she was diagnosed to. I don't know if it is because her scans are coming up or if just everything that is going on in our life is compounding the problem, but I am feeling so beat up and wore out.

Donovan has been very jealous of her and this week Maddy received a box full of gifts from Sleeping Beauty at Disney World and he just does not understand why she gets a wish granted and not him. We asked him what his wish would be and if it is affordable we will try and grant it for him, but he said he wanted to think about it. You just can never win in this situation. There is so much competition between the two of them and no matter how hard we try to level the playing feild and give each child special time and attention, it just never seems to be enough. I am so tired all the time that I don't feel I have to energy to fullfill all their needs. I worry about the choices I make for them, what I expose them to, that I am being overly cautious or just not cautious enough. I worry that I will make a wrong decision that could affect her health in some way. I know it it is stupid and irrational, but I blame myself for her cancer, for her pain and suffering. For all the things yet to come. I struggle to keep control of these feelings and tonight I am losing the battle. They come over you in a wave. Your head starts to spin and your heart races, your hands shake and you suddenly feel so weak that you are sure you are going to fall down yourself. Donny says he will feel that way himself at times. But for me it lasts for hours. We were just sitting watching a movie and I started feeling this way and that was at 11pm and I am still going through it. Although now it is so late and I am so tired I am very nauseaus. I just want to go pick her up, hold her close to me and never let her go. I kneel by her bed at night, fighting back the tears, praying to God to keep her well and give us all the strength we need to keep going every day. I pray for understanding for Donovan and to ease his fears. He screams out in the night and I will go in to find him curled up in the fetal position shaking and crying. I feel so damn helpless. So many things in our life right now I feel so helpless about. I don't know what to do to fix my family. To make them all well. Donny has really been suffering. He holds it in most of the time but his personality has changed so much this last few years. I look at him when he doesn't know I am there and he looks so sad. So broken down and sad. I want to reach out to him and make this all better for him and Maddy and Donovan. But I can't. I can't make it right for any of us. We all just keep suffering in our own ways, just making it through the day so we can battle the night. The long and unrelenting night. I told Donny tonight that I want to just start walking and not stop until my body collapses from exhaustion or to just get in my car and drive until I can't drive anymore. Just to keep moving. Maybe just to run away from all the pain. The trauma of cancer does not end just because the treatment is over, in alot of ways it just begins. I am happier than hell we are in remission and she is doing relatively well, but it still feels like hell.

I hope you all weren't looking forward to an uplifting journal entry this week. I can't help how I feel and can't pretend that every thing is well and looking good when it doesn't feel that way. If any of Maddy's faithful readers out there have any words of advise or encouragement or just want to write and say that I know how you feel, then please do. I could use a lift right now. Please keep praying for her, that her late term chemo effects will be minimal and for strength for us. And please send Donny some words of encouragement. He kinda gets left out of most of this but he really needs some support.
God Bless, Holly

Wednesday, June 30, 2004 10:02 AM CDT

Why is it when your kids are around you 24-7, you could just ring thier little necks every time you turn around, but then once they go somewhere you miss them like there's no tommorrow. Maddy went to her grandparents house on Monday with Donovan so we could spray our shelter belt for mosquitos. Donovan came home yesterday to go to summer school and Maddy came home this morning. But last night I could not sleep at all, I just missed her so much. Donovan was so lonely for her and after about 2 minutes of her coming home they are fighting again. I don't know what I was thinking when I came up with the idea that if you have 2 kids then they will entertain each other and life will be so much simpler. I must have had a momentary loss of my mind, totally and completely,to have not recalled from my own childhood the sibling rivalry that was my everyday life.
Can you buy Calgon by the truckload?!?!

The work on the house is moving right along,.. at a snails pace. Everything takes so long to do, if you want to do it half way right, and there is always more to do than you had originally thought. Never fails when you are planning out the remodel that you totally overlook a step in the process somewhere and then usually have to back track and redo things. Or maybe it is just with us that happens. I finally decided how to paint it and decorate it and I am excited to see how it will turn out. I am hoping it will look as nice as I am imagining.

Maddy is getting fuzzier and fuzzier everyday. One day her hair looks black and the next day it is white. I am still waiting for the signs of pink! I am putting new photos of her fuzz in her photo album so make sure you check them out.

Other than that not much new here. Battling the mosquitoes, the kids, the house. At least our weather is warming up a little and it could actually pass for summer up here now. I got the kids a little kiddy pool to splash in yesterday. We went put up our big pool on Monday when the kids were gone, and there was a tear in the bottom. Of course we didn't discover this until we had about 1,000 gallons of water in it. Needless to say we won't need to water our lawn there for quite awhile. So instead of the hassle of trying to set it up, see if it leaks, clean it out again, we decided one summer without the big pool wouldn't hurt anyone. After all we only have 1 more month that we could actually use it and then we will be gone and school starts. I think the kids will have just as much fun in the little 2 ft pool, if not more, this summer anyway.

Well it is Ballet day and I had better get everyone ready so we can be off. Have a great week!

Wednesday, June 23, 2004 8:59 PM CDT

Broadway get ready there's a new star coming to town!!! Maddy is having such a great time in ballet and seems to have a knack for it. She practices everyday, usually right in front of you as you are trying to do or see something else. But then again isn't that what a star does?! And Donovan made it to the top of the rock climbing tower today! Way to go Donovan!!!! Man was he proud of himself. We are so proud of him too. Now he wants to be in the ballet class since he mastered the rock he must move on you know. I think he will probably change his mind next week. One never knows though.

Maddy is getting fuzzier and fuzzier and it seems to be all brown. Donny says it's just dark roots and then she will be blonde again but I am afraid we will have to say good bye to the golden ringlets of hair she once had and hello to the world of brunette. Maddy told me not to worry that her hair will be what ever she decides it to be. So you never know it could turn pink-I'll keep you posted.

Well once again we have invited ourselves into the money pit. What was going to be a seemingly straight forward renovation of the living room-remove panelling, fix ceiling, add lights, paint, has turned into finding a rotten window, gutting the entire room down to nothing-well we did manage to save the closet from any major demolition-small joy- rewiring the entire room, reinsulating, re-sheetrocking everything,then replace the huge picture window, mud, tape, sand, mud, tape, sand, and then hopefully paint and put in the floor. Mind you we can not afford any of this so lots of fun out here on the farm. I kept telling Donny that there was mildew in the living room and that every time I sat by the window I would get a migraine, well he said I was smelling old dirt, don't ya know-Is there such a thing as young dirt?!?!-and that there was nothing under that panelling. Well my nose knows and I knew there was something there. 2 points for me. Not that I'm keeping track or anything. Unfortunately it was a self defeating victory as my intuition is leading to quite a time consuming and unplanned renovation. It will take 3-4 weeks just to get the window and then probably another week or two after that to finish up and we have scans the end of July and our big trip the first week of August so it will really be getting down to the wire. Not to mention the kids playset still isn't stained and put up and the house really needs to be painted yet this year, and the list goes on and on forever it seems. As soon as you get one project done 10 more pop up in it's place. So most of our fun family plans for the summer are now being put on hold or put off so we can get the living room finished so the kids can have a place to play again and I can get all their junk out of my office! Actually their junk seems to spread accross my entire house. Every nook and cranny is being consummed by my children and their stuff. If it's not toys it is objects de art that they have so lovingly scribbled for me in quadruplicate or glued together for me taking the bills and unread magazines off my desk to use, or clothes, and I am not always sure if they are dirty or clean but I have kids (and a husband) that shed clothes and shoes everywhere in my house like a snake molting 8 times a day. I have officially given up. Well officially for today anyway. I may change my mind tomorrow, we'll see. Life with kids is definetely a challenge.

Flash back time. Maddy's ballet instructor happens to be someone I know from my youth. Now I remembered him but not exactly sure why I remembered him or from where. Well it turns out that we -so logically- took dance together as kids. Well he went on to be on Broadway and I went on to be broad. But that isn't the most depressing part, we were in dance together over 20 YEARS AGO!!!!!!!!!!! I feel sooooo old today. It was nice once we made the connection to our connection and to talk about the people we know in common but to look back in time to when we where on stage at the Fritz dancing to "Jump to My Love" by the Pionter Sisters-just saying that name dates me to the early 80's- it just put me in a mood. Not a bad one just a mood. So strange how that can happen. It seems that there was no life before July 11, 2003. It can be kinda shocking at times to have a revalation that we all lived before cancer and we will all live after cancer. I can not exactly explain how your world shrinks so incredibly that you are incapable of fully realizing what is going on around you at any given moment and yet as it shrinks it grows in leaps and bounds and one day you realize just how many different ways you have grown. I cannot say that I have liked the way our life has changed or the way it came about change, but now that it has we have to keep going with it. Talking tonight with my former dance mate and Maddy's teacher I became envious of how happy and fulfilled he is. He got to fulfill his dreams-even though we were complaining how old we have gotten tonight, he is younger than I am and has already done what he dreamed of, he starred on Broadway in 3 major productions, he still is doing what he loves to do and I, well I still don't know what my dream is. One thing we have learned this past year is how precious life is and that it is too short to waste, but aside from my family and their needs, I have never looked into what I would like to be when I grow up. I know I am not alone in my feeling this. It is quite common for people who come through a major medical crisis to question thier goals in life. I just don't know where to even begin. Maybe I should ask my little Miss Know It All asleep upstairs in her pink Barbie room what I should be. I'm sure her answer would be priceless.

Well, Little Miss Know It All was not actaully asleep upstairs-get real mom, you only yelled at me once so far, you have to yell at me atleast twice before I will listen!-her answer to my life altering question?!?!?!?!!?!?!? -isn't the suspense just killing you?- " You have to be my mom of course you silly goose-What were you thinking mom?!"
Spoken like a true kid. God I love her!

May God keep you and bless and watch over you and your families, May he keep you safe and Healthy. Good Night!

Monday, June 14, 2004 10:41 AM CDT

We have fuzz!!!Maddy is just starting to get peach fuzz all over her little que ball of a head. Her eye brows and eye lashes have grown back in again and maybe this time they will stay. Cross your fingers. I can't wait to see her with hair again. She has informed me that she no longer wants long Rapunzel hair but thinks she should have Maddy hair instead as she always did like Maddy hair! I told her that I couldn't agree with her more so she said,"Fantastic!" and walked away. She is so funny.

She started ballet at the ND Ballet Company in Grand Forks and she was just beside herself with excitement. She had a blast and Donovan sat the entire hour and just watched her. Her instructor is someone I went to school with and he is quite good. They played games and twirled around and really had fun. And the best part is that there is a rock climbing center right outside the door of the ballet studio so Donovan gets to start rock climbing next week while Maddy is in class. What could be more perfect. Donovan is so pumped about it. No he can literally climb the walls and not get in trouble for it! Donny will be there with him for that so they will get some daddy time together. Donovan needs that. He is getting a little better with his jealousy towards Maddy but it is still very hard for him. We have done many Maddy focused events lately and he has done rather well with all of them. He is asserting himself more instead of waiting for someone to notice him and then getting upset when someone doesn't. He is speaking up and becoming more social. I am glad because if you just tell him to say something he won't, he has to do it on his own and I am glad that he is.

We went to Emily's party on Saturday and Emily looked just wonderful. Maddy was so excited to see her. I have heard of Emily all week and Maddy even got dressed twice for her party thinking if she put the clothes on we would just go. I told her it doesn't work that way. I expalained the party wasn't until Saturday and she would have to wait. Maddy's solution to that was to just go now and Make a party when we got there. Ya gotta love the way she thinks. In her mind-problem solved mom, lets Go! Then we finally get to the party and she tells me she wants Emily to come back home with us and have a sleep over. I tried to explain to her that Emily was having a party and after the party she was going to be tired so it wouldn't work out. The Maddy solution- Well if Emily is going to be tired than that was perfect because she could get good rest in her bed with Maddy snuggling her. It gets hard rationalizing with her somedays. But we all had a graet time and I just can't say enough about her whole family. They are very special friends. Ones I wish we would have met under different circumstances.

WE are going to have to set up a time for Maddy's party and hope she stays well this time. Anyone have any suggestions on a date? Well lets see what else we have done...... Oh we went to the Ballet recital on Sunday with friends of ours as their daughters were dancing and they did a wonderful job! They did multiple dances each and it was just a really nice show. So much hard work. Maddy and Donovan really enjoyed it and everytime the girls came out they would get so excited,"I know her mom!!! I know her!" They were "fantastic" as Maddy put it. It really made her want to be in class even more and when her teacher came out to do a dance she was just beside herself. She was hoping that meant that they where going to have class after the show was over. She was ready to get up on stage and dance and sing for everyone! Did I mention she was SHY!?!?!?! They did both fall asleep towards the end of the show but had a good time. I really enjoyed it to. Donny slept through part of it. I just can't keep him awake anymore. I suppose we had been up late on Saturday, after Emily's party we went to my grandmas and visited with my uncle who was down from the cities and my aunt who was here from Washington. I suppose we finally got home and to bed around 1am. We had a really good weekend.

Some bad news for us, I called this morning to make reservations for Maddy's dolphin swim and Florida law states you must be atleast 6 years old to swim with the dolphins so we are not going to be able to do that. I am very dissappionted for her and for myself. I guess we will just have to start saving our pennies so we can go down again when she is old enough.

Well I hope our weather changes soon. I can't remeber the last time we saw the sun and all the gloom and rain is starting to get to me. We can't put the kids' playset together because it keeps rainging we have to seal it first, we can't put the pool up as it hasn't even been warm enough to go swim in it. And now this week we need to get going on our last room to fix. I can't wait until this is all done. Our den turned out pretty nice and I am excited for the kids to have a playroom big enough for all their junk, I mean toys!. Then eventually to fix the floor in the kitchen and maybe do something with the cabinets and then we will be done-hopefully. It always seems by the time you get all your house done it is time to start over and touch up the first rooms you did.

I hope everyone is well in your lives and that you are all safe and enjoying the summer. Please keep Maddy in your prayers and in your hearts. God bless you all!

Sunday, June 6, 2004 1:42 PM CDT

Oh my gosh- What a whirlwind of a week! So many awesome things going on and all at once of course. First we had the Relay For Life Walk on Friday and Maddy dressed up as Wonder Woman of course. The rest of us Tie-dyed our T-shirts red, white and blue and were very super Heroeish-(New Word?)- We decorated our camp in red, white and blue stars and streamers. We sold sno-cones-red, white and blue of course and flashing pins also in our trio of colors. We raised an extra $122.00 just from that! Way to go team!!!! We also ended up winning the Team Spirit award!!!!!!!!!! Maddy pretty much won that single handedly with all her singing, dancing, and YAHOOS!!! she kept yelling out all night! I am so proud of the team we had. Everyone did an awesome job and I can't wait for next years. I already have themes running thru my head. We had a good night and it was pretty fun. Maddy sang for hours up on stage, my brother sang and I gave a 4 page speach. Can you believe I didn't even cry!!!! I think I was the only one. I was concentrating so hard on not losing my spot and not stuttering that I managed to suppress my urge to break down infront of a few hundred people. I am proud of myself. I suffer panic attacks when ever I have to speak in front of anyone and I did rather well. I didn't puke on my shoes or faint so it was all good! Well other than the pouring rain, having wet shorts most of the night and lighting my butt on fire, it was a blast! Maddy literally was dragged out and off to bed kicking and screaming. I do believe she would have made it all night dancing and singing. The nurses from the hospital in Mayville all bought her a Walt Disney themed gift basket from the silent auction and she was so thrilled. Thank you all again for that! Maddy loves her nurses! All of them. Thank you to everyone who bought a lumineree and donated money to to help fight cancer and support the families struggling with this horid disease. Many people get confused on the truly important issue that ALL cancer research is important and if progress is made in one area of cancer treatment than that information will be applied to ALL cancer research, whether it is for children or adults. It is all important!!!! The money we raise goes to help our families locally. And we all kicked butt!!!!! $43,000.00 was our count as of Friday-(for the whole Relay)- and we raised more money that night. We are a great community for supporting each other and pulling together for a good cause!!!!!!!!! I can't encourage people enough to get envolved, if not with this than with something.

Anyway after staying up ALL NIGHT LONG...... We then went in to Fargo and Maddy made 4 guest appereances on the Childrens Miracle Network Telethon. She sang You are MY Sunshine-the Maddy version and then her own impromtoo song about friends and love and family. God is she to cute!!!! We were there for a few hours and then we rushed off to the Shania Twain concert, as we were given tickets from the director of the Fargodome via Make-A-Wish so we took Maddy's best buddy Emily and great grandma, grandma and grandpa. Donovan thought it was loud but Maddy was dancing in the isle and enjoying herself. We then raced back to the theatre so Maddy, Donovan and Emily could be in the final segment for the telethon and it was just great. Emily looks so good -A little to red my dear!!!-Use more sunblock!!! We are jealous though. Emily has her 1/4" peach fuzz and Maddy still looks freshly waxed. Her eye brows and eye lashes have started to come back in again but her hair is still not making an appereance yet. Soon I hope. It was like one big family reunion at the telethon. Maddy's freinds from Child Life where all there and Kristine brought her baby in so Maddy got to hold her. Maddy's PA Beth Ann was there and so many other wonderful people. It was nice to see them outside of the hospital and just to visit about normal things and not just treatment. Maddy and Emily have alot of the same after chemo effects so it was reassuring to talk to her and get insight into what Maddy is going through. Maddy keeps alot to herself for fear if she says something isn't right she will have to go in and start chemo again. So we kinda use Emily to get the inside scoop on how she might be feeling. And Emily says it helps to know it's not just her feeling a certain way. Emily is such a cool young woman. She is in our hearts and on our minds always. Maddy sleeps with the picture frame Emily gave her and a picture of them together in it. It is just to cute. We can't wait for Emily's party next weekend! It is all I am going to hear about all week I know.

Maddy also gets to start ballet on Wednesday and Donovan will start summer school on the 14th. I can't believe May is gone and done with. I don't even remember May! It was April and now it's June! We have so much to do before school starts in the fall. We did manage to get our entry way completed and the den turned into our living room. I think it turned out pretty nice. Tearing out that huge, heavy fireplace was a chore but not to bad. I can't believe it is actually done. We have only been taking about doing it for a feww years. Now we will move on to the old living room. That room will be alot more involved as we have to re sheetrock it, put in a new ceiling with lights and a floor. Hopefully we can get it done as quickily as we did the other room. Speaking of which I should go wake the old man up and get him motivated on a project today. It is beautiful outside today, alittle hot but we need it to dry up all this rain we have been getting.

We hope everyone is well and enjoying life. We thank you for your continued prayers and support. I will be posting new pictures of the walk and the telethon so keep checking her photo album.

Monday, May 31, 2004 11:48 AM CDT

I'm sorry it has been over 2 weeks since I last updated on our Maddy but as you all know life just is never predictable and often gets the better of you. Especially when you least expect it.

Maddy is doing well and other than the fact that her hair keeps falling out as soon as it starts to grow back in, she is fine. She is looking forward to her Relay for Life walk coming up on Friday, Please do not let it still be raining!!!!!- It's only rained almost everyday for the past 2 weeks- Being cool is ok with me though, if it gets to warm out all the mosquitoes will hatch and that is just a whole 'nother paranoia there. We are going to tie dye the Relay t-shirts red, white and blue for Maddy's Super Hero theme. Maddy is going to be Wonder Woman of course and Donovan has a batman costume. Mom and Dad are wearing our t-shirts with capes and big S's pinned to our chests. I don't do tights. It doesn't matter what I wear-I am going to be such a mess that day anyway. I am sure I will go through post traumatic stress all evening. Especially after reading my speach. And the best part is after being up all night with the walk we get to go to Fargo and be live on TV doing interviews for the Childrens Miracle Network. I will look like death warmed over I am sure. But Maddy will be so ready and willing to entertain. She really wants to go and see all her friends. Who am I to say no?! It will be good for her. We will get to see Emily and her family again and Maddy is so thrilled about that. She just loves Emily. It's all for a good cause. I still have to write my speach for the Relay but everytime I start I have to stop because it is so hard to relive those fisrt moments. I need to in order to move on but it is still such a fresh, deep wound. The emotional roller coaster we have been on the last year has left us frazzled and old. I swear we have aged 10 years if a day.
Maddy will have scans on the 30th of July and pray to god they are still clear. Her Make a Wish trip is scheduled for August 4-10 but we will go down to Fargo on the 3rd for a party and will be wisked off to the airport by limo on the 4th for our 8am flight. We should be in Florida around 2pm so will have about half a day to explore and get familiar so we can formulate our plan of attack for the week. We will leave around 2pm on the 10th so we will have a half day that last day to do our shopping and getting our souveniers. The kids are very excited to go. I am just hoping and praying her scans are clear so she gets to go. I will be cautiously optomistic until the results come back. I do find it strange that she is only have a ct scan, chest x-ray and labs done. I would have thought an MRI and bone scan also to be sure nothing was missed. Maybe because her prognosis is very good that less testing is needed but I am always worried that it, something will be missed. I don't ever want Maddy to have to go through this again. I don't know that I could handle this again. I have been feeling very tired lately. I feel the physical effects of all the high stress this last year. I don't feel the same. I feel as if I have aged, drastically. I don't feel the same inside either. I feel slower, sadder. I feel as if I will never fully relax again in my life. My muscles are at a constant tension and my mind seems foggy. Maybe time will ease all this, maybe as we get farther out and she has less physical reminders of her cancer than I will be able to let go of some of the pain. I have good days and bad days and right now I guess I am having a bad day. The gloomy rainy weather, crabby kids cooped up in the house, to many things to do and no time or money for them all. To much stress. But life goes on doesn't it?! Eventually the sun will come back out and the kids can go outside and in time everything important that needs to get done will, eventually.

Maddy is going to start taking ballet lessons this June starting on the 2nd wednesday. She is soooooooo excited. I can't wait either. She has wanted to be able to do this for so long. She practices the steps her nurses taught her everyday. And she sings as she twirls. Somedays it makes me cry to watch her. A mixture of so many differant emotions as I look at her tiny body and her bald head.

Well I must go and feed my little ones as they are starving to death ya know. It's been a whole 2 hours since they finished their breakfast that only took Maddy over an hour to eat. Gotta love kids. I wonder when kids actually get to eat a meal that isn't ice cold by the time they have finished?!

Keep praying and God Bless You All on this Memorial Day!!!!!

Friday, May 14, 2004 10:58 AM CDT

As I have a few minutes between my chicken nugget making duties I thought I would update a little about our Little Princess. She is doing much better and feeling pretty normal. She did manage to lose a pound last week. I don't know how I am going to ever get this kid to eat enough now to grow anymore. And yet the dr tells me to worry about her becoming obese. He said chemo changes your metabolism on a molecular level and she will be prone to weight gain. It's not happening yet! Donny and I don't keep alot of junk food in the house and have cracked down on her all day grazing. She gets 3 meals and 2 snacks that have to be fruit or yogurt, something healthy. I am really glad we got to see the dietician down at Mayo. She had a good sense of what to expect with the younger kids after chemo and has been right on so far. And Donovan just never wants to eat, is never hungry so we have our battle there to. All kids are that way though. Eat just enough to stop the hunger pains but can't sit still long enough to eat a proper portion. Don't you all wish you had that problem?

Well Donovan is over his ear infection and back to himself. He is so happy school is almost over. I am to. I want us to just all be together as a family and relax for alittle while. Although it would be nice if the weather would cooperate alittle and start acting like spring and not fall. What was with the snow and ice? We had buckets of hail out at our place and the winds were unbelievable. We had just taken all the kids bikes and crap out for the summer and we get hit with hail and temps in the 30's. The kids are so disappionted that they can't be out in the mud and the rain. It's one thing to play in the rain when it's 70-80 degrees out, but when the temp is lingering around the freezing point, well ya just gotta stay in.

I finally got in to the dr yesterday and the lump on my head is just a cyst but I have erosion of my left knee and so I had some fluid drawn off and a cortison injection yesterday. It would have been nice if the dr would have told me my knee would blow up like a balloon and I wouldn't be able to walk after. I still had to go and get groceries. It is still swollen today but not as bad. The novacaine wore off so now it hurts. I might have to have surgery to smooth out the rough spots on my knee joint. Now doesn't that sound like fun? I tell you what, the Relay For Life Walk is going to be real interesting. We have quite a few physically challenged team memebers as of right now. We just might have to get one of those golf carts and drive around the track! I know that defeats the purpose but it was just a thought! I do hope my knee is better before our trip to Disney World. It won't be much fun if I can't walk.

Donny is his usual crabby self. Wants to get things done around the house but the weather is just not cooperating. Now it's suppose to warm up and I can't walk so I can't help him. Gotta love it.

Well my stove is beeping and my daughter is hanging off of me saying she is starving! So I had better go get her nuggets in. I am not sure yet when the potluck will be but I will keep you posted. Have a great day and God Bless!

Monday, May 10, 2004 6:14 PM CDT

It's Monday and all seems to be better for our little wonder woman. I felt aweful about the potluck on Saturday but we just didn't know what was going on. She had something growing in her cultures but since she is already on an antibiotic their isn't much more to do. She had diarreah all weekend but the vomitting had stopped and her temp came down on Saturday. She has been a bugger about eating but has been getting lots of fluids. I am not sure when we will reschedule the potluck for, if there is a better weekend then another than please let me know. I know alot of graduations are coming up now. We have finally called to schedule her Make-A-Wish trip for August. I'm getting excited about going now. I haven't really let myself think to far off into the future but I think she will be fine and it sounds like so much fun. It will be good to go before her August scans and before school starts. The eternal pessimist in me figures that way if for any reason things aren't perfect with her scans she atleast got to go. Now don't all blast me for thinking that way but I am a mom ya know. I can't help it. I pray for good health but brace for what ever might come. In life you just don't ever know. Like this lump I have on the top of my head. It's been there for a long time and never thought anything of it until my mom talks about my grandma having a brain tumor a few years back. Where I was that I don't remember that I do not know but Now I am going to have to have it checked out because you just never know. I had a tumor in my ear a few years ago so I suppose I could have one growing out the top of my head. I told Donny it was my brains trying to escape. He didn't find it as amusing as I did. Men.

I asked Maddy if she knew what yesterday was (She has been wishing me a Happy Mothers Day all week)so she got all ecxited and said,"Yes, Yes, I know what today is...........It's Happy Dandelion Day! Right mom-right?!" Where in the world she came up with that I do not know but now forever in my mind Mothers Day will be Happy Dandelions Day! While her and Donny were at the clinic on Friday she had to stop and get me a flower for Mothers Day. It is the first mothers day flower picked out by my kid for me and Donovan made me a card and WROTE BY HIMSELF I LOVE YOU. Has anyone read the book -Everything I ever needed to know, I Learned in Kindergarten?-it is my absolute favorite book and he (the author)talks about a Gummy Lump box were he keeps odds and ends kinda gifts from his kids that mean so much to him. His treasures. I will have to put my flower and card in my own Gummy Lump Box. True treasures of life are worth nothing to anyone but the owner. I also got a small ceramic Walmart shopping fund savings bank-to funny- and a cow for my kitchen. They do not compare to the card and the flower. Donny gave me a diamond ring for Mothers Day after Donovan was born, I would trade it in a heartbeat for another hand written I love you. But don't tell Donny that-or Donovan either. He might start ransoming off my jewelry! It was a good day and one I will treasure. Even though Maddy was still kinda sick she is cancer free!!!!! Now that's the best gift in the world. I know it's late but HAPPY DANDELIONS DAY TO ALL THE AWESOME MOMS OUT THERE-MINE AT THE TOP OF THE LIST-I LOVE YOU MOM-And may you all have a gummy lump box in your closet somewhere with all your babies treasures. God Bless, and keep Praying!

Friday, May 7, 2004 4:04 PM CDT

Maddy is not feeling well so Maddy's potluck party on Saturday, May 8th has been postponed. She has a very low white blood count and an infection somewhere (we don't know where). We need to keep her at home and keep an eye on her the next couple days, as she has had a high temp and has been throwing up.

We will let you know when it is rescheduled with a new party date.

Sorry for any inconvenience that this may cause for anyone. We truly wish we could be there.

Thank you and please keep Maddy in your prayers.

Monday, May 3, 2004 9:49 PM CDT

We are officially done with treatment and appts now for 3 months!!!! Now what!?! The end of treatment is all you look forward to, all you want, all you focus on. You keep searching for that light and when you are finally basking in the glory of it you are hit by the nothingness of it. It feels good, don't get me wrong, but when you get to it is just nothing. You finally have time to breathe and then you notice just how much time. No appts, no counts, no running in for fevers and gama and transfusions. I am so very glad for it, but everything that we have been putting off for the last year now needs attending to and the task is so daunting. Up until today, actually, we couldn't do much and now that we have had the all clear it is like-Where do I start? There is a comfort in the routine of the treatment. You get to know every sign of a fever approaching or a problem arrising. You have your days ear marked for what may transpire. You have months of appts made in advance, you have meds, shots, and feedings to occupy most of your wakeful day, and now as one of my friends put it, I look at her and go," Now what do I do with her." She is down to 1 med twice daily Mon-Wed-Fri until the end of July and that is it. I keep having this odd feeling all day that I am forgetting something. The normal just doesn't seem natural.
So odd that this is how it is. I really expected to feel a burden lift, my mind to clear(Now I really am dreaming!), a certain feeling, but it has been nothing. Maybe it just hasn't hit me fully yet, and maybe that is a good thing. Maddy's dr today talked about how after treatment kids and parents usually go through a depression, the kids mainly because all the attention is fading away and the parents because thier adrenalin levels finally drop and it all hits them like a ton of bricks. I am hoping for just a half ton. Although my stress level has been so high for so long I think if my adrenalin slacked off any I would go into a coma! It is all truly a wierd senario.

Anyway, up at the clinic today we saw so many friends and it was really great to see everyone doing so well. The first thing Maddy said when we got to Meritcare is she wanted to see Emily and ran straight back to the last room she had seen her in. She was so disappointed that she wasn't there. But fortunately for us our appt took forever and Emily came in and Maddy got to see her! She hugged her and kissed her and was so happy. Maddy just loves you Emily! And it was great to see Emily look so well. We also got to see Brittany, a very brave girl in Larimore that was so very helpful to us and Maddy in the beginning when Maddy was so scared. Please everyone include her in your prayers. She has a very long road ahead of her and is in our hearts always. There was also a few faces I have missed from the home there today. So many battling this horrible disease of cancer. I felt so bad that I did not know. Many prayers will go out tonight. There is also a young girl of 14 at Meritcare right now fighting cancer after a having an organ transplant when she was younger. She is very brave and her mother strong but this is so hard for them. I don't want to be to specific as I never know what to put out there that people are comfortable with, but she is really having a rough time and could really use your prayers as well. And while we are at it there is an absolutely adorable little boy who is 1 years old fighting cancer too. Pray for him also. He is often up at the clinic when Maddy would go in for counts and appts and he is so little to be fighting this horrible disease. So many to think about and keep in our hearts.

When we got home Donovan was less than thrilled to see us as I had mentioned before but I can attribute part of his grumpiness to a flaming ear infection we discovered on Friday. It's always something. With all the ear infections these 2 have had I had invested in an otoscope sometime ago-I highly recommend all parents getting one, saves you many trips in for nothing and helps you get them in when it is something- And when he started digging in his ear I knew. I peaked in there and sure enough it was infected, so off to the clinic we went. And wouldn't ya know, they put him on the same antibiotic as Maddy. Now I have to make sure the right kid gets from the right bottle. They think it is cool and compare the taste every night. "Maddy, mine tastes like strawberry's, what does yours taste like?" "Well Donovan mine tastes like something different." They are identical you know but we can't have the same. Gotta love kids.

It was a good weekend. It was our nephews birthday and the kids had a blast together. Our niece slept over on Saturday and we all went to church on Sunday for the first time since this all started. It felt so good and the kids were actually very excited to go. Maddy put on a dress and combed her 3 hairs. Applied her chapstick just so and she was ready to go to Gods house. She informed me as she was getting ready that Gods house is where all our prayers go to be answered. And then she asked if God would be there, so I told her God is with us were ever we go and she says,"Well duh mom, but is he going to be there in person today?!" She is something. She really didn't know what to think of Pastor Jeffs new beard. She didn't even know it was him at first. She kept asking me if he had ever seen her before and it took awhile for her to make the connection, but once she did it was hugs all around.

I am really looking forward to her potluck on Saturday. I hope those who can will come. I am working on a picture board of the last year and I think it will turn out nice. If anyone would like to help me set up and clean up please e-mail me and let me know. The potluck is at Mayville Lutheran church at noon on Saturday the 8th. Maddy's Relay for Life Team will meet at 11:15 before the potluck. This will be our only team meeting so please come if you can. All money and luminaries have to turned into me by the 20th. If anyone would like to dedicate a luminaria in honor of someone with cancer, please contact me, my e-mail adress is at the bottom of the homepage. They are $5 a bag and all the money goes to the American Cancer Society. I am not sure how well our team is doing as far as money raising yet but I know we need more people to donate. Maddy hasn't reached her goal so if anyone could spare $5 to help us find a cure for cancers like Maddy's than please send a check made out to the American Cancer Society with the persons name you would like the luminaria dedicated for: to me, Holly Williams at RR 2 Box 23, Mayville ND, 58257.

Well I must get off to bed now. It has been a long day and I am actually feeling like I could go to bed and sleep and it isn't even midnight yet! I could get used to this. Please remember all of those who battle tonight in your prayers, with what ever disease it may be. We have met some extraordinary people this last year and our hearts will never be the same. Thank you everyone, for your love and support. God Bless you.

Thursday, April 29, 2004 10:45 PM CDT

WE ARE HOME WE ARE HOME WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!
I am so relieved that this week is over. Maddy did awesome as usual and all the nurses were happy to see her again in the nuclear med section. I guess the dr's had heard from all the nurses in the different departments that Maddy was back and they were all calling to say how well she was and how cute she was. Kinda weird to go into your appt at the end of the day and have the dr say he had been hearing about Maddy all day. He is 1 of the 6 oncs she has at Mayo and he said he was very excited to finally meet Maddy as we have talked with him on the phone several times but not met. He had heard so much about her and was glad he was scheduled with her. He was very good about answering our questions and showing us all her scans which were all clear!!!!!!!!!! He said her prognosis is excellent, around 80% for long term survival, and was even talking about her going to college! I asked him about that study I mentioned earlier about no ewings survivors past 15 years and he said that is just not true. The chemo used in ewings treatment started in 1971 and in the 80's when ifosfomide was added and doxorubicin it brought the survival rates up to around 70%. Any statistics are going to be from older studies and not accurate. We have better surgeons, better drugs for therapy and the side effects, better radiation and every year more and more info on the disease. We met with her surgeon and he agreed it was time to get rid of the tube and the port so Wednesday at 6:30am we went in. Maddy was upset at first as she thought she was going to get a poke and when we reminded her she was still accessed from the testing all week she was fine. She was joking around with all the nurses, took the anesthetetist for a walk around the recovery room and administered all her meds herself. It was hillarious, they came in with her Versaid to make her relaxed and of course she had to do it herself so she was sitting in my lap and started pushing the med in her line, and as she was pushing she started tipping straight over! I was ready as it is just like she had a 6 pack and started giggling and pulling her lips out and sticking out her tongue. God it was funny! I carried her back into the OR and the nurses gave her a syringe filled with water so she could squirt one of the dr's as she went in. Of course she got him right in the crouch and she just laughed! I laid her down and told her how brave she was and how much I loved her and that I would be there when she woke up and she was out before they even gave her the anesthesia! Since it was a slow day in the dept we were in they let Donny and I stay in the private recovery room instead of having to go back out to the waiting area and I sat down and I was out. I heard her surgeon come in and tell the nurses he didn't want to wake us as he knew how exhausted we are and that he had already talked to us about the surgery so he went out and the next thing I knew they had Maddy back in the room and had her in my lap. She cried alittle because of the IV in her hand so I told her as soon as she drinks something or has a popsicle than we can take it out so she sucked down 2 popsicles just like that and the IV was out and she was ready to go by 9:30. She had no pain, no nausea and we were down in the park by 10 am feeding her geese! She ran all over the playground, up and down the slide and then she was hungry so we went to Perkins for pancakes and sausage and she actually ate! We went back to the room around 1:30pm and we all went to sleep until 6pm. She woke up hungry and has had no pain at all. She has been eating and drinking and POOPING! My biggest concern was with all the anesthesia and meds that she would plug up and with no tube I knew I would never get her to drink the senna. It smells aweful and tastes worse. But she has had no problems at all this week. She was more upset about her eyelashes falling out again than anything else!
I am just releived and drained and so ready to move on. I unpacked everything when we got home. My carts that were always packed and by the back door are cleaned out and all her med supplies are packed up to. We left Donovan at my brothers for 1 more day as he is having so much fun over there he quite honestly doesn't want to come home. I can't blame him. It has been so stressful here this last year that I haven't wanted to be here either. Although it does kinda hurt to have your son tell you not to come home yet. Maddy has missed him so much this week. Everytime she got a treat from the nurses she insisted on getting one for Donovan too. The nurses thought that was so cute.
She does have a way with people. She had wanted a Tootsie pop so I had bought her a bag of them at the grocery store and at the clinic on Tuesday she stood in the lobby and handed them all out to the people passing by. She would go up to someone and say they looked like they needed a sucker and a hug and would give them a big hug and the sucker and then move on. I have to admit she just amazes me. She has such a big heart.
We ran into friends from Mayville at the hospital on Monday. The Rexines were there with thier son Jackson and he was having scans right after Maddy and then on Tuesday his appt was right before Maddy's with our same surgeon and on Wednesday his surgery was immediately after Maddy's. It was so nice to see them and Jackson. I was glad to read he is doing great after surgery and they are home. Way to go Jackson!
I feel more positive now and better about things. I needed to see the scans and the x-rays myself and have that visual comfirmation that the tumor is gone. I know that she had surgery to remove it but I needed to see that nothing new was there or anywhere. I am a very visual person and have to see to believe. I am not very good with just being told everything looks good I needed so desperately to see it for myself. I have been so scared, more petrified, with her ending chemo and having to move on. The unknown is so great sometimes a person can get swallowed up in the thought of it. Many things are coming to and end for us. This part of our journey through life is over and a new journey begins. We are moving forward without many different forms of safety nets, medically, financially, but we have a clearer picture now of what we want our life to be and how to get it. We are going to have to make many more changes this summer, this year, in our life. But I am ready. Leigh Ann thank you for your words. I am not going to quit dreaming for her future, or ours. Thank you everyone for all your words of support. So many times I have felt defeated and could not see the light at the end of this. But here we are being blinded by that light. We have finally arrived at the end. I do not know what is in our future beyond enrolling in ballet classes and swimming lessons but what ever it is we are here.
Tonight I am saying many a prayer of thanks for Maddy's success and her never ending zest for life. Also many prayers for all the people we have met on our journey through this. Maddy is a magnet for people and you get to meet and know the stories of so many you normally would never even notice. There are so many people suffering, hurting, beginning thier journeys, some are celebrating in thier ending like we are. We pray for them all. Thank you for all your prayers love and support for us and remember- Saturday-May 8th at Noon at Mayville Lutheran Church-We are celebrating her life with a potluck lunch. Please everyone come if you can. Maddy is ready to PARTY!!!!!!!!!!!!!!!!!!

Thursday, April 29, 2004 8:00 AM CDT

Howdy,

Maddison sailed through the surgery with no problems. She was in surgery by 6:45am and out feeding the geese by 10am! She is such a tough little girl, she hasn't even needed Tylenol yet!

If today goes as planned they will be getting home late tonight.

Wednesday, April 28, 2004 8:06 AM CDT

Howdy,

Maddison is doing well! The doctors have found no new growth, all of the scans are clear!

The doctors also believe that there will be less than a 20% chance of recurrence!!

Maddisons port and tube will be removed this morning and hopefully on her way home by tomorrow (Thursday).

Holly will have a detailed news release for you when she gets home.

Thank you for your thoughts and prayers.

Jason Middlestead (Maddy's uncle)

Friday, April 23, 2004 10:10 AM CDT

Well it's Friday and I am still not packed yet for our trip down to Mayo. I think I have finally gotten most everything straightened out. She will have blood work, an MRI and a bone scan, chest x-ray on Monday and then on Tuesday she will have a CT scan and a short renal clearance test that takes about 2-3 hours and involves blood draws and peeing every hour. Sounds like fun don't it. Then in the afternoon we will meet her oncologist and her surgeon. She is scheduled for surgery on Wednesday to have her port and feeding tube removed. Lets pray this all goes well. Somewhere in there we have to squeeze in an appt. with a pediatric oncology nutritionist. It will be unbelieveably busy. Then hopefully we will be heading home Thursday.

I am happy she is done with chemo but something keeps nagging at me. I feel restless. I haven't been able to stay on task or stay focused. So many things in our life that are going on that I can't talk about here. I wish I could. I read something today about the long term survival rates of children with ewings. Even if cured from their cancer the long term effects of the drugs can be devestating. One person said that the U of M doesn't have any records of survivors past 15 years from treatment completion. I am hoping that was just for that hospital and not world wide collectively.
I am nervous about her scans. She has shown no signs of tumor activity but I am just worried all the same. Maybe it is just fear of the unknown yet to come. I have sat down many times and started to journal but stopped because I am feeling so many emotions right now about so many things. I have wanted to lash out at the negatives in my life but have been holding back because sometimes you just can't fuel that fire. People are very ignorant and self righteous at times and even though you would like nothing more than to slap them, you can't. It wouldn't do ant good. Some people are just to self absorbed and stupid to be able to reason with. I have been very angry lately. At people, situations, the whole medical system. After 10 months we are still trying to get our bills from last July billed out correctly. Rather than take the time to redo the bill and resubmit it they would rather just turn us into collections every month. I tell you I do not need the stress. Papers that were supposed to be mailed to Medicaid last November still had not been sent on Wednesday so it has been phone tag and all day calling from here to there trying to get all the right papers to the right places by today so we can be approved for out of state care. It is just so incredibly frustrating. Had this all been done when it should have been done we would have gotten help with our lodging and meals for the week but as it is we are on our own again. We are just sinking into a deeper whole as every month goes by. I just want all this crap to be over. The scans and surgery over, the house fixed, the bills taken care of. I want to go back to living, not just hanging in suspense all the time. Donny likes to blame my moods on PMS, when your a guy it's always just PMS. Well it's not, the unrelenting stress of the last year has just wore me down. I am tired of it. I want a break from it but that is just not possible. If I left it would all be waiting for me when I came back. It's like trying to find a corner in a round room. Being trapped, going around in circles, continually looking for something that is not there. Wanting an answer no one can give me. Is she going to be all right and grow up? Not just make it to adult hood, but grow old. I want that for her with everthing I am.
I feel vulnerable again as we move into a new phase of our lives. There are so many choices to make and so many things to take into consideration. What is going to be safe for her and what isn't. How can I learn to trust again. I need to be able to trust her team when they give me their recommendations but so many dr's have different views on everything I just don't know who is right. I usually go by my gut instinct on most things and that has servrd me well but there are some instances were I get nothing.

Well Maddy has been feeling well, is in count recovery and is actually eating. She is taking her meds orally so she gets used to them before her tube comes. She is just amazing. The most amazing part is we have all been sick with colds, coughing, and stomach flu. Yet she remains fine. Goes to show you how resiliant she is! Donovan was throwing up Wednesday and I was sick with it yesterday. Donny hasn't gotten the stomach thing yet but we have all been coughing and plugged up since last Thursday. Gotta love spring time and hayfever. Maddy's excema is flaring up now that the chemo is over so it is back to baths every other day, no soap cleansers, oil in her bath water. We aren't sure what to use on her topically as steroids thin your skin and hers is thin enough from chemo, that new Elidel is steriod free but is an immunosuppressant so it can't be used on large areas and she is pretty much covered head to toe in scales. I will have to Maybe get her squeezed into a dermatologist while we are down at Mayo also.

Donovan is excited to get to go to his cousins and to Jeans in the afternoon after school. He won't want us to come home at the end of the week! We had originally planned on taking him with but since she has so many tests and surgery I know he can't handle all of that. Not to mention I need to stay focused and not be distracted by an antsy 6 year old. Maddy will be tired and crabby and enough of a distraction the way it is.

I set her end of chemo Potluck at Mayville Lutheran Church at noon on May 8th. So everyone please bring a dish and come and celebrate with us in our new life and at Maddy's remarkeable journey through cancer. This is not a fundraiser, Just a chance to get together with everyone who was helped us so much and rejoice in her being in remission. I really hope you can all make time for it. Maddy is very ecxited about it and so are we.

SO REMEMBER-MAY 8TH-MAYVILLE LUTHERAN CHURCH-24 3RD AVE SE IN MAYVILLE-HIGH NOON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well I gotta get going. Our Danielle is 19 today and we have really missed her and Trevor since they aged out of foster care last spring. We need to get ready to go to her birthday celebration in Fargo. The kids are so excited. Tomorrow we are just having dinner with family for Donny's birthday and then finish packing for our trip. We will leave Sunday morning. It is such along drive.

For all of our team members for the Relay we will have a team meeting at 11:15 on May 8th before Maddy's potluck begins. Please plan to attend as this will probably be the only meeting we have before the Relay.

Please keep us in your prayers this week that all her scans are clear and surgery goes smoothly. I will update when we get down there with were we are at and the phone number. I don't know that as of yet. Thank you for all of your support and please leave me a note of encouragement in the guestbook. I could really use it right now! Love you All!

Saturday, April 17, 2004 9:52 PM CDT

Well we didn't quite make it through without a trip to the hospital. Her platelets were at 12,000 and the transfusion point is 15,000 so off to the hospital we went. It was nice though as we got to see one of our favorite nurses that we missed during Maddy's last week of chemo. It was a long day and Maddy only had a very short nap so it was a difficult one. She is other wise starting to slowely come up with her counts so hopefully Monday will be our last day of counts and shots! We can hope. Maddy had 3 port accesses today and with her low platelets her little thighs are just big black and blue marks from her GCSF shots she gets daily. No signs of fever-yet. Donovan has a bad cold and now Donny says he feels like he is getting it. I am trying to keep everyone seperated but with kids it can be next to impossible. I am just grateful we made it through the flu season without anyone getting sick. Now to get through the mosquitoe season. Always something to look forward to. We killed a couple outside yesterday already, dirty buggers.It is supposed to rain tomorrow and that will mean the grass will take off and it will be time to dig out the lawn mower. We are going to start the mosquitoe eater this week to and try and get a jump start on them. Maddy wants to be out riding her bike and is so insistant on it. Today she told me I just don't really love her because I am not letting her ride her bike today, mind you that she tells me this as we sit in the hospital waiting for her platelets. I asked her how I was supposed to let her ride her bike when we aren't even at home, she said well your a mom aren't you, figure it out. So there you go moms, we are expected to perform miracles on demand and make everything right in their little worlds despite everything. Luckily the family that was up there visiting another little girl came in to say Hi as they heard Maddy was back and the dad gave Maddy a dollar and she forgot about the bike until we went to see great grandma and then it was back to being unreasonable. The only good part about her being so overly tired (we were up for the day at 5:30am) is that when we finally did get home she went to bed and actually went to sleep instead of trying to stall for a few more hours, not minutes but hours. She is the only kid I have ever known to be racing up and down the halls at 2am in the middle of chemo. She is not one to lack energy or enthusiasm for life. If there is somebody she can be engaged with and recieving attention from she is there, performing and being so irresistably cute.

Well It is going to be another busy week and had not my mom called to remind me I would have totally forgot it was Donny's birthday coming up on Saturday. Hopefully Maddy recovers in the next few days with her counts and Donovan gets over his cold so we can go get Dad a card and a birthday present. Maddy had to remind me that Dad neeeds presents and wouldn't he just love a Barbie cake?! or maybe Strawberry Shortcake. I am sure Donny would be so thrilled to get a Barbie cake on his birthday. I'm sure Maddy would be so happy to pick him out a Barbie of his very own to go with it. Donovan thinks he needs some Hotwheels. Gotta love how kids minds work don't ya?!

Well Maddy wasn't the only one up at 5:30 this morning so I am going to attempt to get into bed before midnight, see I am still optimistic!, and so I say good night to everyone, sweet dreams and pray for count recovery for her so we can get off of these dreaded shots and some of her meds!

Wednesday, April 14, 2004 5:41 PM CDT

Don't ya just love spring in ND?! The wind just about does you in. I think ND is mother nature in menopause. Hot and cold, warm and gentle and then just nasty. And then another cold spell, with a hot flash. Gotta love it. The kids have gotten to go out this week but the wind is so raw that I don't want Maddy to get a chill or inhale to many liters of dust and dirt. Donovan has been outside more and you can tell by the increasing number of jeans with holes in the knees. I make him wear pads but you know kids, if you aren't just right there telling them they don't do it. Both of them are pretty good about putting on thier helmets. Could you imagine Maddy's little bald head hitting the pavement? I cringe at the thought. She can not get near her bike until her helmet is on. Donovan is really into his bike and the scooter(the reason of the many holes in our pants, scooters don't go so well on gravel!) He got a soccer ball for easter and really enjoyed playing that with me this week. I think we will start him in lessons this fall. See how it goes. We will have all summer to work on our team skills then. Both the kids want to go to swimming lessons and Maddy is on me about dance. I have a feeling we are going to remain busy. I haven't checked around about dance classes yet. I am waiting to see how her appts at Mayo go. Her gortex has been bothering her and there is always the possibilty that her surgeon may want to replace it. Be praying not. I do not want her body being opened up and exposed like that so soon after chemo. Just one day at a time right?! To much to think about all the time. I do not feel any less stressed out now that the chemo is over. Maybe even more. I have been having anxiety attacks almost daily the last few weeks and it is really no fun at all. Medication doesn't help. Maybe I am on the wrong one, I don't know. It seems that everything we have been putting off all winter needs to be done now and it just gets to be so much. Phone tag all day with whoever you are trying to call that day, paperwork that has gotten lost in the shuffle, trying to keep everything straight in my chemo fried brain. I am feeling frustrated today can you tell?! I took Donovan in for therapy today and he insisted on going first so by the time he was done I didn't get much time to catch his therapist up on what's been happening and I tell ya I need that as much as he does. Then I took him to get his pictures done which he was perfect for. But the 40 minutes it took to get the pictures ordered between phone calls and poeple coming in to pick up their portraits is a whole 'nother storie. Donovan can not stand by my side for 40 minutes and wait for anything, especially not at 4pm when he is tired and hungry. I got a little frustrated myself. I would finally get her to come back over and start working on our package and the phone would ring and I just wanted to scream at her to leave the damn phone before Donovan ended up next door in the crystal shop with the soccer ball and broke everything in site!! I didn't say anything but I didn't get my pictures ordered the way I wanted and that just makes me mad to. Breath in........Breath out.......... just think happy thoughts. Hey does anyone remember the guy who had the painting show on PBS. He is a little white guy with a 2ft afro that talks in a super soft voice and talks about painting happy little trees, in happy little clouds, with happy little birds. Everything in his paintings were just so happy. You couldn't help but laugh at his dialogue, but he is an awesome painter. I guess if I could paint like that everything would be happy for me to. I think doing the show during the 70's helped with that to!

Anyway now that I have vented maybe I can go and chill out. Not likely. Somebody here is in a mood and so life sucks for everybody. I'll let you just guess at who. It's bad enough having to deal with your own bad mood but dealing with someone eleses just really sucks some days.

Well lets just hope tomorrow goes better. Maddy has counts in the am. I think her platelets have really dropped so lets pray she doesn't have to have a platelet transfusion tomorrow. I really don't think I am up for going back to the hospital again yet. I just want the scans and surgery and everything to really be over with. Soon. Well keep us all in your prayers. You all are in ours. I will let you know how her counts go tomorrow. They were really good on Monday so lets hope she doesn't hit rock bottom this last time. No sign of fever yet. Although she does have a lot of yeast in her mouth.

Have a good night everyone, thank you, thank you to all who have been signing the guestbook.

Friday, April 9, 2004 9:41 PM CDT

WE'RE DONE! WE'RE DONE! WE'RE DONE! WE'RE DONE!WE'RE DONE!
I can't believe we are finally done and home!!!!!!!!! Maddy had a pretty good week. I had them check her counts this morning and she needed a blood transfusion so we had that done before we left, otherwise we would have been back up there on Monday for it. Now if we can make it through the next week with no fever we should be in the clear. I just am numb. I have not fully had it sink in yet that the chemo is over. She will go down to Mayo for scans and an appt. with her surgeon April 26th, 27th and then she will have her port out and the feeding tube will come out and she will go back to Meritcare on the 3rd of May for a review of her scans and then it is 3 months until her next set. She will have scans every 3 months for the next 4 years and then every 6 months for a year and then WHEN she is declared CURED it will be yearly scans. Can you believe it?! We had the same nurse tonight as we did the very first night we were up at the hospital after finding her tumor. So for me it was a sign of closure. She had a really good party today with lots of food, cake, balloons, presents, and family and staff. Emily didn't feel well enough to come up and Maddy started feeling sick and had to leave her party early to go and lay down. By the time she got up Emily was gone but her parents were up and that was great. Maddy's counts were dropping today and she started getting the accumulative effect from the chemo. Her throat hurts and she is spitting again. She also complained that her back hurt were her gortex is from her amputation and you can feel it right under her skin. It feels sharp. Her surgeon will check this out when we go down to Mayo. She had some tylenol and more anti-nausea meds before we left. Right now her and Donovan are upstairs talking instead of sleeping but that's fine. Atleast we are home were they can be talking! Donovan gets really aggitated at the hospital and doesn't want to have anything to do with Maddy when she is hooked up to the IV pump. But when we get home he wants her and misses her. It will probably take him a while to accept and believe that she is better and done with chemo. Maddy understands more and is very happy. Not happy she still has 2 weeks of growth factor shots to do but happy the chemo is done and is already talking about how she is going to fix her hair when it grows back. I never pictured this day happening. I have always had hope but never dared to picture in my mind the end- just in case. The eternal pessimist I guess. Or maybe it is just part of being a mom. You want to believe so much that every thing is going to perfect now but the doubt always lingers in the back of your mind and comes out at the most inopportune times. I believe if I don't picture the future in my mind that things will work out but if I picture her healthy and happy and cancer free as an adult it will never happen so I don't go there. I believe she will start kindergarten but that is as far as I dare to go. She may never relapse but other things can happen so I would rather be realistic and prepared than be devastated because I never thought about the negatives. I am not saying I am going to dwell on them or let it ruin our lives but I am a realist. I do believe she is a survivor. She is very strong and has astounded everyone with her remarkable progress. I wish we would run into that intern at Mayo that told us she would probably not make it and have him see our miracle. No one should tell parents that when quite frankly nobody can predict what a persons body will do or how they will handle treatment. I don't believe they should pump you up and tell you without a doubt your child will survive, but they should always give you hope. It has been an incredible journey. I find it comforting and ironic that we are finishing up with treatment on easter weekend. A time of hope and new life. A time of healing and rejoicing. Blessed are those that have not seen and yet come to believe. There are so many things in our lives that we can not see, can not forsee but must believe in blindly. Our faith, our health, our lives. I have had many struggles with this not just in the past year but in my life in general. It is very hard to just accept things and believe in them because you are told to. I have had to search my soul many times to accept and make it through this hell we were all cast into. But through the blind faith from all of you in us and in Maddy we have come thru it and are here on this easter weekend rejoicing in our new life we have now before us. Many prayers have been said and answered this last year. I have said it before and will continue to say it now and in th future. I will never cease to be amazed at the love and compassion that the people in our lives have shown us. I cannot begin to tell you have happy I am to have this moment to share with all of you. This caringbridge site has allowed me to vent, to cry, to grapple with my feelings, to keep all of you who care so much informed about Maddy and our family. It has been my link to life at times. It has connected me to the rest of the world when feeling totally isolated and alone. It has been an invaluable tool for me to come to terms with what has happened to my family. I do not know if I could have made it without the support I have recieved from everyone that comes here to share in our lives. Thank you again and again, for caring, for sharing, for shedding tears with us and praying for us. And now in celebrating with us. This really is going to be the best Easter ever. God Bless you all and Have a Wonderful Easter! We love you. Good night!

Thursday, April 8, 2004 11:55 AM CDT

Can you beleive tomoorow is the last day of chemo? I am in shock still. I can not get over how fast this week has gone by. I am very glad it has flown by. Sitting up there watching the clock is the worst. But now it is noon on Thursday and I am just getting lunch cleaned up and Maddy is just sitting down to lunch at great grandmas with Donny. Donovan and I will hang out for the afternoon as Maddy naps and then go down at supper to swap kids with dad. Hopefully we have a good night tonight so Maddy will be in a good mood for her end of chemo party at the hospital Friday at noon. She should finish up chemo around 8:30pm and then home!!!!!!!!!!!! I am going to be crossing everything that we make it through with no fever. Gonna be pushing the fluids down her tube, bleaching everything, forcing the naps everyday, What ever I can do. I just want to move on, get through the scans, get through the surgery, get the tube out and be done. I can't even begin to try and explain the myriad of emotions I feel in a moment. I am maxed out. Thank you to everyone at the home that sent meals this week. I so appreciate it. I have been so stressed and tired lately we have been living on peanut butter and cereal. Thank you again. When Maddy is done and has count recovery we need to get the moldy panelling out of the house and finish off our rooms. Maddy can't be in the house when we do this so I will have to take the kids to grandma's and Donny is going to need help. If we could get enough people to help we should be able to get most of the work done in a week. If anyone could help please send me an e-mail. It is the last thing left to do as far as the house and then we can put that part behind us too. We need to replace 2 windows, atleast 1 door, 2 rooms of panelling, put up a new ceiling, rip out the carpet in the den and lay down new flooring in both rooms. ( we had water damage from a leak in the roof that we didn't know about until we replaced our roof last summer)We will have to re-sheet rock at least 1 of the rooms and the ceiling. Maddy can't be around any remodeling dust or air that has mold spores in it for atleast 100 days post chemo so I don't know how much of the summer she is actually even get to be home for.

I was surfing the caringbridge sites last night, checking up on all the kids who have touched my heart and I was at Julianna Bananas site and her dad was talking about all of us parents surfing the CB sites at MIdnight -if you have a sick kid you never sleep- and how you become addicted to them. You are drawn to the pain, the sorrow, the misery of thier lives. You just can't pull away from them. You can relate to thier stories, thier parents fear and the kids terror as they struggle with thier cancer. And then you see their face. And that is it. You read the pain in their faces but when you look into these kids eyes you are captured by the purity of them. Especially in the younger kids. They are not clouded over with fear, and anxiety. They are not wasting thier days obsessing over potiential germs that could make them sick. They do not dwell on the issue of life and death. They rarely even seem to visit the subject of thier own mortality. They are life in it's purest form. And you can not pull yourself away from them. And when one of them losses their battle and is released to God you cry as if your own child has just passed. You get so scared that your own baby will be next. There are times when it seems that children are passing away everyday and it gets to be to much to deal with and I will step back for awhile. Regain my hope, and plunge right back in. Where would I be if all of you reading my journals about Maddy and our struggles just couldn't take it anymore and stopped. Stopped caring, praying, believing in us and believing for us at times. My husband says I need to stop that I get to sad but he doesn't relize what the caring bridge world is all about. He doesn't surf the sites. He doesn't get involved with the other kids and families. He doesn't understand about what I just said. Thank you everyone who didn't turn away when we where in despair, or losing hope. When I felt I couldn't go on because everything just keeps going wrong. I hope that as we all heal and life becomes redifined for us you continue to be there with us. Caring and praying. As the drama ends I hope you all continue to keep in contact with us. Although I am not sure that my life could ever be drama free. I know it is going to be a hard year and it will go by to fast. As summer draws nearer I start to feel loss. I found pictures of Maddy from last summer when I was cleaning the other day and I started to cry. She looked so babyish. Sweet and whole. Her face was chubby still from her baby fat. Her eyes sparkled in a more vibrant shade of blue. Her hair gleaned in the sunshine. Her soft blonde curls forming a heart around her face. I miss that. I miss her that way. She has grown so much and changed so drastically that there is none of that pure inosence left. She is stil sweet. Her eyes still sparkle but in a wiser, darker hue of blue. She still has a round face from the chemo/fluid side effects but the babiness is gone. She is no longer shy and hiding behind her momma for comfort but rather introducing herself to everyone she meets and asking them to say a prayer for her, because she will pray for them. She will sing and dance for anyone at any moment for any reason, whether appreciated at that moment or not!

She is bold. She is bald. She is honest. She is full of life. She is full of questions. She is happy. She is seldom sad. She is wise. She is a charmer. She is beautiful. She is a free spirit. She is loved. She is adored. She is precious. She is genuine. She is mischievious. She is a leader. She is cancer free. She is a survivor. She is energetic. She is helpful. She is afraid. She is insightful. She is a thinker. She is deep. She is compassionate. She is insecure. She is 4 going on 40. She is my daughter.

I am anxious. I am afraid. I am relieved. I am over whelmed. I am vulnerable. I am insecure. I am angry. I am happy. I am sad. I am heartbroken. I am in pain. I am exhausted. I am petrified. I am numb. I am crying. I am praying. I am praying harder. I am optimistic. I am filled with doubt. I am only human. I am just a mom. I am just a mom with a daughter with cancer. I am forever changed.

There is such a difference in the desription of us. She is everything that is good. I take on everything else. She is a part of me and is the best part of me. I hope she stays this way. Well maybe a little less stubborn would be good! That to I am afraid she got from me. Well I think I have babbled on enough for today. I need to get in the shower and get Donovan dressed and ready to go. I will try and figure out how to add links to our site so you can visit the kids that have become a part of my life. Keep praying that she continues to do well and send me strength to make the right decisions about our future now. Our love to you all.

Tuesday, April 6, 2004 0:38 AM CDT

It has begun!!!!!! The LAST (pray to God, knock on wood, cross your fingers) CHEMO!!!!!!!! If I could have that kids energy for just 1 day I would be so happy. I do not know how she does it. Up late, up in the night, no nap yesterday, up early today and she just ran circles around the office today. Maddy said last night," Mom, why is it all I ever do is chemo, chemo, chemo. Enough with the chemo already." I told her just 1 chemo left. 4 sleep overs. Then she is done. She started jumping up and down screaming, "Just 4 more years and I am done with chemo!" My God, just the thought about gives me a heart attack. It was a very busy morning. Her dr had been gone last week so he was booked this morning and we didn't get in until 11am. Since her appt was late and it takes a few hours to mix up the chemo we got to leave for a little while and it was a good break. When they called at 2:30 to say they were ready we went back and Maddy was out in a minute. I don't even think she moved. The room was hotter than hell (Just guessing here) and Donny was out too. He had an appt in Fargo this am and Jean-Bless her Soul- took Donovan for a sleep over so I got to come home and have some down time. I of course have have been cleaning non-stop since I got home at 4:30pm but I have been cleaning in peace anyway! Peace and quiet, every one loves peace and quiet. That is Maddy's new saying as of late. Evidently mom has been mentioning needing some peace and quiet around here a little to often, so of course my little Myna bird has to repeat it all day. I keep trying to tell her it's only peaceful and quiet if she isn't talking non-stop about the peace and quiet. But at 4 you just don't get that concept.

Well it was Donovans birthday on Friday and we had a real quiet day. Mom had an anxiety attack Thursday night that lasted for hours despite Ativan and so I was up literally all night. Thank you Marge for staying up with me until 5am and keeping me company, even though I know you were tired. Luv ya babe! I did finally fall asleep, or maybe more accurately I passed out from shear exhaustion, around 9am and slept until 12:30pm. Needless to say it was a low functioning day for me and we didn't do much in the way of excitement. Even still though, Friday night I started feeling anxious again, though not as bad as Thursday, and it was 2 am before I fell asleep. I was going to say something so stupid as, "I don't know what caused it!" I'll do my own duh, huh?! thank you! Not like we don't have any stress in our lives and we are now going back out into the unknown. I try very hard not to dwell on it but despite my best intentions, my brain does have a mind of it's own, I go there anyway. To much to think about. All the time there is too much to think about. As Kendries mom so eloquantly puts it, life with cancer is just one big suck-fest. I have to agree with that. You lose control over every aspect of your life including your own mind. My friend Jean and I where trying to come up with a good diagnoses for the absent minded, attention deficit, ( I can't believe I had to stop and look up the spelling on that word!) obsessive compulsive, verbal dyslexia, (but I got that one right!) We started with ADODVD, but decided anything that ended in VD was no good so we gave up. I would just like to know why I am all day long picking crap up in one room just to carry it into the next room, set it down and pick up something else just to repeat the process?!?! It is driving me nuts. I am forever just shifting the junk around my house room, to room. And Nothing ever seems to get put away were it belongs, atleast not for very long. I feel as if I am just waking around in circles all day long. And why is it that the neurons between my brain and my mouth seem to be permanently severed? I try to respond to someone in a conversation and either I am not able to do anything more than stare blankly at them in response or if I am so fortunate that day to actually be verbalizing , I cannot get my words out in any understandable order. Thankfully most of the people I have frequent contact with are used to this strange disorder of mine and are some how able to interpret my mumblings and gratefully still continue to talk to me,anyway. I tell you what, there are days I truly feel brain damaged. I am just a total space cadet. And you know, honestly if I was going to be so brain fried I would have really rather have been able to have had the enjoyment of the "trip" first!

Anyway back to Donovans weekend of birthday. As most of you who know me know that a birthday is never just a singular event but a long and drawn out weekend or week of fun and partying!!! Did I mention the torture part yet?!-Heh, who said that? hehe. Honestly, I love big parties with tons of screaming kids in long drawn out events. Seriously. It all goes back to the brain damage thing I was telling you about earlier. On Saturday I thought it would be thrilling to take the kids to the circus. Major suck fest. My new favorite word! 1 elephant, a few tigers and a pack of dogs. 1 clown and a trapeze crew that hit the net and not thier mark. It was one of the worst circus' I have ever seen. Do you remember when the circus was a variatable zoo of animals and there were dozens of clowns all crammed into tiny cars, and acrobats, flying trapeze (that never missed thank God because they never used nets back in my day-like I am so old!) all 3 rings going at once and it lasted all day, but that was ok because it was awesome?! Saturday I was constantly looking at my watch hoping it would soon be over. And you know for going to a Shriners circus I would have sure thought a little bald kid with a tube up her nose would have atleast gotten a discount on her ticket. They didn't even have kid discounted prices, the kids were the same price as adults! I was not prepared for how much it cost. We always got free tickets because we did foster care so I was not aware of the cost of admission. Totally disappionting for mom and dad but the kids thought it was great antway. That's all that really matters right? Right. So on to Sunday, Donovans big birthday party. 20 kids invited, a dozen adults. I don't know why but I love the caotic energy of a good birthday party. The balloons, tripping over kids every way you turn, pizza, cake and punch. The only time for my kids when I don't color coordinate thier clothes with the food they might spill on them. Refer back to the obsessive compulsive disorder I mentioned earlier! Gift bags for all the kids, games, crafts, I just get a kick out of all of it. My sister thinks I am nuts. She doesn't understand why I don't let my kids play with play dough in the house because it is too messy but tie-dyeing t-shirts is ok! Or why my idea of a relaxing day shopping involves atleast 4 kids. Keep in mind I only have 2 so that involves acquiring someone elses kids to go with. Some people are just to strange. Any who, Everyone had a great time, most all the kids came, and I can now officially open my own Toys R'Us. But I must warn you-DO NOT ATTEMPT TO WALK ANYWHERE IN MY HOUSE BAREFOOT! I have a few choice words to share with the guy who invented clear legos!!!!!!!!!!!!!

Well guys it is 2am, I have laundry to swap, a shower to take and hopefully some sleep to get. Donovan gets to go to Grandma's house for a sleep over tomorrow after therapy so Donny will get to come home tomorrow and enjoy his own peace and quiet. Donny you can thank me later! Good night to you all, keep the prayers coming and I will see you in my dreams!

Tuesday, March 30, 2004 1:01 PM CST

How sick is this. I had to go look at the flooding Goose River yesterday. Now I have seen and lived thru more water than I ever thought I would. I watched my minivan float down the Red River in 1997 as we were evacuated from our house by the sheriff. 9 feet of water in our house. Garbage mud and sand bags everywhere. The mess, the smell, I still can't watch the flood videos without crying because I lost my house, my job, my animals, my vehicles. But for some sick and unknown reason I had to load the kids up and drive around Mayville and look at the water. I must really be losing my mind. Donny had already been out with Maddy and my brother earlier in the day and was more than eager to go out again. Can you can tell we have alot of entertainment opportunities up here in North Dakota!? The road was pretty crowded so I guess I wasn't the only one curious yesterday. Strange. My brother lives right next to the river so I guess I wanted to see if he was under water but they are up on a little hill so he was safe. Some people had sandbagged there houses and the local greenhouse was under by a few feet. Today the water is way down. I sound like the local weather man now. If I was doing the weather there would be mild temperatures, very little precipitation and lots of sun. A nice warm breeze would be good to. I walked the kids up to get the mail today and the strawberries are already popping up in our beds. The grass is starting to turn green and the birds are back! You know it is spring when you hear the glorious sound of birds chirping in the morning! Donovan is outside right now moving dirt and rocks from one side of our yard to the other. He also found his scooter and is enjoying that today as well. Maddy on the other hand is not as much of an outside girl and prefers to be where ever her mother is. She dances and sings and colors me pictures in every room of the house regardless of what I am attempting to do. I have a permanent crick in my neck from trying to watch her dance all day and still accomplish doing the dishes, folding clothes, picking up toys, ect. Right now she is singing a song about how silly I am to go get the mail with no hat and gloves on and how she will tell all the bugs to shoo away from her nicely(her words there)! What a kid. Her new thing now is to ask me every few minutes if I am enjoying any peace and quiet. If Maddy is around it is never quiet! I also have a quota of hugs and kisses to give Maddy everyday, she has informed me now. I must give her so many every hour. I just put her down for her nap. After asking me 3 times in the last 30 minutes if it was nap time I am taking the que that she is needing to go to bed. Although all the way to bed they she cried,"I am not tired and I do not want to take a nap!," She is already sleepin!

Well Donovan just came in and is covered in mud so I must transport him into the tub before he destroys my clean floors. Thank you for the messages in the guestbook, I appreciate them so much. God Bless you all.

Saturday, March 27, 2004 9:34 PM CST

Rain, Rain, go away, come again another day! Our snow is almost all gone but the mud is here and the ditches are roaring like a raging river! It has been raining on and off since last night and our yard is one big mud puddle. The humidity in the air just makes you feel heavy. Our dehumidifier in the basement is going full tilt and it is still dry down there so we are feeling fortunate for now. Donny just finished getting the shelves up in the basement yesterday so if (I should say when) the water starts leaking in all our junk won't get wet. We can also still get a mop under the shelves so we can bleach and prevent mold and mildew from growing. I am still holding out hope that we will have a drought this year so I can have less worries about the mosquitoes, water in the basement, what have you. I am not a favorite among the farmers I am sure but last year it was so wet and humid and the mosquitoes were so awful. It felt like we lived in a jungle more than ND.

The kids have actually had a pretty peaceful day and everyone pretty much napped on and off all day. What else do you do when it rains like this? I know I could have cleaned a closet or sorted clothes or some other domestic duty that needs to be done, but it was just one of those real peaceful days that you just don't want to disturb.

I had entertained the thought of venturing out to town since Maddy's counts are way up and she is feeling good, but you just don't travel down our gravel road in the rain unless it is a necessary trip. We get really deep ruts that grab your wheels and swing your car/van towards the ditch that presently has about 15 feet of runnung water in it. I have visited the bottom of that ditch last spring and my license plate is still embedded in the mud there some where. That is a trip I do not ever want to repeat. Lucky for me the ditch only had a few feet of water in it at that time and Donny was able to pull me out with our suburban. So with that thought in my head we all stayed home.

Maddy was rowing my arms like we were in a boat last night as she sat in my lap and said we were going on a trip somewhere and where would I like to go?. I said how bout we go crazy? Maddy said," No, that isn't a very long trip!" Someday's she just kills me.

Maddy will have counts on Thursday and that is it for the week. Her counts were good enough to go in on Monday and it was tempting to make the arrangements, but she also needs time off. I could really tell this was not a very strong round of chemo as she is broke out all over in excema patches. Her excema had all cleared up when she started chemo and has not had a problem with it since. I will have to ask her dr if she can use that elidel I keep seeing advertised for excema. It is supposed to be steroid free and safe for young kids. She is also developing an allergy to pets it seems. I hope that is a chemo related thing and not true allergies coming out. Other than that life here is the same stress overloaded existence that we have come to accept as the norm.

If anyone would like to help Maddy with her Relay for Life fundraising efforts you can send us your check made out to the American Cancer Society with the name of the person you are honoring clearly printed out on a piece of paper. Reciepts availble on request. The dedication luminaries are $5.00 for each person and all money raised goes to the American Cancer Society to fund research to cure this aweful disease and provide support for local families. Thank you to all who have signed up on our team to walk and welcome to Jean who just signed up-better late than never, right Jean?! It is going to an awesome time for all.

I suppose I should go and maybe sneak downstairs and wrap Donovans birthday presents while they are supposedly all in bed.(I can here them giggling and thumping around!) The days seem to fly by sometimes and before I know it it will be next Sunday and I won't be prepared for his party at all. He invited 20 kids so I will need a week to prepare! He is so anxious and when he figured out tomorrow is Sunday he assumed it was his party date and got all excited. The dissappointed look on his face when I explained that he still had a week to go just broke my heart. Him and Maddy are so pumped up for it.

The kids are catching heck from dad now to get into bed so I had better go and settle them down. My love and prayers to you all and please remember to stop by and say hello in the guestbook. Just remember that it doesn't matter what anyone thinks about what you write. It only matters that we know you cared enough to write something! Good night!

The address to send the Relay for Life donations:

Holly Williams
RR 2 Box 23
Mayville, ND 58257

Wednesday, March 24, 2004 7:23 PM CST

I never have quite gotten used to the term hump day for reaching the middle of the week but regardless, it is here and almost done with it. It has just been such a long week already. The kids are just to wound up- fighting like cats and dogs and the cats and dogs are fighting like the kids. I feel as if I am in the twilight zone most of the time.

Maddy is doing rather well. No fever. Knock on wood, my head will do, and has not had the usual stomach problems usually associated with her chemo. She is actually eating very small portions and drinking juice and milk all day. She is even up to almost 4 cans of Pediasure a night. She has counts tomorrow and I won't be suprised if she needs a blood transfusion. She was down to 8.8 on Monday and they transfuse at 8.5. She has been bleeding a little with her shots the last few days. She never gets real tired with a low blood count so it can be really impossible to tell without counts being done. I hope it's just blood and she stays up with her platelets. I don't think her counts are going to go down as far as they have in the past with this round. She just isn't acting as if she is that low and she should be coming back up over the weekend. I am really getting anxious for and about her last chemo. I want this all to be over but I am also scared that the cancer will come back. As long as she is on chemo she is cancer free and I guess in my mind "safe". Not that any one is really safe from anything anymore. There are still so many unknowns in our near future, many decisions left to be made. It is going to be a very busy summer and then school will be starting in the fall again before you know it and another major life change as Donny goes to school and Donovan goes to full days in 1st grade. Maddy wants to go to school to but I am sure she will enjoy mom all to herself all day. That is really going to be weird. Just me and Maddy all day, alone, just the 2 of us. I will be her only playmate, her sole source of entertainment. God have mercy. It wouldn't be bad if I had her energy or the tolerance to have someone talk at you 24-7. I get audio burnout after about noon.
Get this. After all her God questions a few weeks ago I decided to pick up a kids bible that had discussion areas after each chapter so I could ask her questions and have an answer key in the back for me to check with when she started firing away with her questions. So I showed her and Donovan the book and explained what it was and then it was bathtime and we forgot about it. Well the other day I came downstairs and the bible book was layed out on the table and the question pages had all been scribbled in. I was irrate. I yelled for the kids and Maddy comes in holding a pen with ink on her hands so I know who the culprit is. I was so mad at her for ruining that new book and asked her what in the world she thought she was doing writing in a book when she knows better than that. And as innocent as can be she looks up at me with those angelic eyes and simply states," Why momma I was filling in all the answers for you." By God I was speachless and for me that can be quite the feat. Just the look of hernest on her face melted me. God she can really amaze ya. I have know doubt that she knows all the answers.

What I don't know is the humor of little boys. Donovan the other day was skidding across the floor in the kitchen on his knees and slidding into the wall, knocking his head against the wall and then in turn on the floor as he fell backward. He then gets up, stumbling around and laughing hysterically says," Gee mom I ran into the wall!hehehehehehe" And then precedes to do it again. Someone please explain this to me. I told him to come here and I would give him the concusion and get it over with, so he asked me what that was and I said," Keep it up and you'll find out!" I just do not get little boys. He burps and goes into hysterics. Just the mention of the word fart and he is rolling on the floor, everything is so damn funny and the grosser the better. And he is such an eaves dropper. The phone rings and he will follow you everywhere in the house, yard, garage, to hear what you say, and just like his father, insists on commenting on what you are saying even though he has no idea what in the world you are talking about. It drives me nuts. There is nothing worse than having 2 conversations going on, one in each ear. Maddy does it to.

Other than that nothing new here. Forever waiting, for the end, the new beginning, the uncertain. God bless and Good night!

Tuesday, March 16, 2004 9:34 PM CST

Only one chemo now to go! She did very well with this overnight round and then on Tuesday went down to the clinic for 7 hours of gamma to boost her whole system. We didn't get home till 7pm and then to unload and get washed up. We are all so tired. I had only gotten about 3 hours of sleep Sunday night and we were in at 7:20 am followed immediately by Emily and Maddy couldn't have been more happy. Emily held her hand while she was accessed and then she held Emily's hand while she had vitals done. It was so cute. Maddy had brought Emily a small gift for her last overnight chemo and gave it to her and then took it back and told Emily she had to open it for her. They were across the hall from each other and Maddy was on the go all day. I think she wore poor Emily out! Emily had her end of chemo party and they invited us to it and Maddy sang and danced and hugged everyone. I did manage to get her to nap for a few hours and then grandma called and asked if we could go out to dinner with her and great grandma to celebrate great grandmas birthday so we were able to go. It was cool having 4 generations all together for a girls night out so to speak. Maddy was a bit crabby from the steriods. Well more like on a bad PMS trip! She was laughing and then crying and then laughing. It was like having dinner with Cybil!(She had multiple personalities). Anyway when we got back to the hospital we had to go hang out in Emily's room. I really enjoy Emily and her family and Maddy just adores them. They will always have a special place in our hearts. It atleast made it easy for the nurse Monday night because she only had to go to one room to do vitals and check meds! I finally got Maddy to bed at 9pm but not asleep until 10pm and then she was up every 40 minutes to potty. I was so ragged this morning and I had to be up and in the shower at 7am so we could get packed up, checked out and to the clinic by 9am. One of the nurses took pity on me and had child life come and take Maddy out to the playroom for a few hours so I could take a nap. I have had a migraine for about 4 days straight now and nothing is helping it. I really appreciated the nap. It was a very long day today and Maddy was so tired tonight when we got home. I had run to Walmart to pick up one thing and Maddy just never quits with the questions and gets my mind off track so we picked up the CAt in the Hat movie and left and I never got what I needed! All day it is why this and why that and my brain is on overload by noon. I am glad she is so courious but I have enlightened you all to the sorts of questions she tends to ask so now you know how my days go. She really keeps me on my toes. She is already planning her end of chemo party and insisted on buying party hats and blowers for it. She also wants a cake and dounuts and she isn't sure on the rest. I really hope and pray the gamma helps and she doesn't need a transfusion or get a fever and we can breeze thru this and get to the last chemo with no more bumps in the road. I am so ready to be done. I just want my life back. We are really getting tired of having to start over from scratch. I long for security and the daily routines of normal life. It is coming slowely but I am getting anxious for it. There is so much to do this summer before Donny starts school and I have to decide what I am going to do. We are really going to have to prioritize our lives and do every thing accordingly. We have a lot of changes to make and I do not do change well. There just seems to be so much of it all the time. Oh well, right?! Onward and upward and all that.
I want to thank those who continue to write to us in our guestbook and say again how important they are to us in our daily lives. If you stop by to check on us please leave us a little note. It means so much. Please pray for Emily and Maddy and our little friend Brock who is 1 and fighting leukemia, Joshua, Kody, Jackie boy, Kendrie, Katelynn, Rachel, Billy, Lance, Miles, and all the other children we meet and keep in our hearts. Pray for strength for the parents and understanding and compassion for thier siblings. Thank you

Thursday, March 11, 2004 10:54 PM CST

Sorry it's been so long since my last update. The time just flies when your having so much fun!!! That was a joke. It has been a busy week with appts and counts and house cleaning and the never ending entertaining of 2 small children with cabin fever. I don't know who gets it worse, us or them. I have also been dealing with finding out that our very large wooden playset that we just bought 2 years ago for the kids was treated with arsenic that does leach out of the wood as it weathers and we now have to get rid of it entirely! I am so pissed off that companies-people- knowingly made and sold wooden playsets for kids made with this toxic material. The government has just know banned the sale of arsenic treated wood and is recommending anyone who has a playset, deck, patio, lawn furniture, what have you, made from green treated lumber to have it removed and disposed of as it leaches out of the wood and is absorbed into your body through your skin. You can not burn the wood as the arsenic will then be released into the air and contaminate your air and get into your body through your lungs. I am going to ask Maddy's dr on Monday if this could have caused her cancer. I am so not happy about this. Those companies knew what this wood was going to be used for and the risks that it posed and sold it anyway because it was a cheap way of treating the wood. It just so happened that I actually read the newspaper last week and saw an article about it or I still wouldn't know and would have let my kids out to play on the playset this summer. Those damn things aren't cheap either but you can't get your money back because it is not a recall of the wood just a ban on the sale and production of it. Can you tell I am not happy about this!?!?!!?! We also cannot spray for mosquitoes or have Maddy exposed to any mosquitoe sprays(as much as possible)-melethion, Tempo, whatever as they can be absorbed into your body through your skin even days after application and once the chemical is in your body it starts to break down the cells that produce your bone marrow. Isn't that nice to know! I swear there is nothing safe anymore. Maddy can use repellant on her skin-lotion is safer than sprays as you do not want to inhale the fumes from mosquitoe spray. With the large drainage ditch that runs by our house this should be a real fun summer with the mosquitoes and the threat of west nile virus. Living in town is not a better option as the city does spraying and Maddy's dr said she would have to be out of the house and away from all sprayed areas for atleast 2 days afterwards so where would we go for 2 days every time the city sprayed? I am frustrated. There are so many uncontrollable factors in a persons life. Maddy's risk for post secondary leukemia from her chemo is about 10% we were told and we need to do what ever we can to reduce her risk of exposure to anything else that can be harmful or increase her risk. We are not going to put her in a bubble but this thing with the playset just really set me off. Companies take risks with your lives for the sake of a profit margin. I tell you what, I will be reasearching things more before I buy them and not just taking a companies word that their product is safe just because the government hasn't banned it yet. It's like the Teflon and non-stick coating thing and the formaldihyde that is released from all soft plastic containers that all our food seems to come in now adays and the toxin that drips out of plastic wrap into your food when it is even moderately heated. The preservatives in our foods that are now being linked to cancer, the aluminum in your deoderant has been linked to Alzhiemers along with drinking beverages out of aluminum cans. Aspartame in most everything sugar free is being linked to MS, cancer, brain damage, and the list goes on. I should write a book about all this crap we are led to beleive is safe for us but is actually destroying us. God I sound like a woman possesed tonight but I just have to vent somewhere and quite frankly my husband is sick of hearing it. He agrees with me, but you can only talk about it so long before it gets old.

On to something new. Maddy and I went to Fargo's Relay For Life kick-off tonight to support Emily Campbell as she talked about her experience with cancer this last year. Emily and Maddy have the same cancer in the same location and where diagnosed 1 month apart. We just finally got to meet Emily and her family in the last month as we were on opposite chemo weeks so when she was well Maddy was having chemo and vise versa. Anyway, Maddy was singing and dancing as usual and just totally in love with Emily. And I must say that Emily is a very beautiful girl inside and out and her family is so very kind and warm. Emily is having her end of chemo party on Monday so Maddy will get to be there and she went and picked out a gift for her tonight. She was so thrilled. They will both (hopefully-cross your fingers and toes) finish their last round of chemo April 9th.(NOT THE 10TH LIKE I HAD SAID EARLIER, I was off a day in my counting-1,000 lashes with a wet noodle for me) So Maddy's party will be the 9th from the hospital and then when she has count recovery and scans are done we will have a potluck party hopefully at our church in Mayville. So something to look forward to. Donovans birthday is the 2nd of April so we will have his birthday party on the 4th I believe and Donalds birthday is the 24th so April will be a partying month! Not to mention easter and great-grandpas birthday, god I feel tired already!

Speaking of tired. Maddy's team for the Relay For Life is going to be "Maddy's Hereos" She is going to dress up as Wonder Woman of course. I suggested to a freind tonight and team member and suggested to her that we all dress up as Wonder Woman and evidently the thought of all of us in tights was not a sight she thought anyone would want to see so I guess we will have to come up with something else! I told her we could all just wear BVD's on the outside of our pants with a big S on them but she didn't like that idea either. See what I am up against here! Evidently no one wants to see me in tights or my underwear so we will have to just do something introverted and conservative. So typically North Dakotan for ya. Anyway the theme for Maddy's team is "Saving the World One Child at a Time" and with out knowing this before tonight this years Relay For Life slogan is the Year of the Child. Isn't that cool. It gave me goose bumps. It is going to be a very moving and emotional night. I couldn't even get through the little introduction movie tonight at the meeting with out crying as they showed the survivors taking thier lap. I cannot explain to you why that makes me just bawl. The very first walk I did 4 years ago now, just made me break down as the survivors came out onto the track. And back then cancer had not affected our family as it has now. I will have to use Bounty towels for tissue as Maddy comes out with the survivors this year. I am excited this year. For me it signifies the end and Maddy officially being off chemo and in remission.

Well those of you who are still reading this are probably getting ready to nod off and since Donny just turned his music on and broke my train of thought-thank god, right?!-I will have to stop rambling on. I really need to go to bed anyway. Maybe now that I have vented a little, ya that's right a little, believe me I do not have enough hard drive to vent alot!- I will be able to go to sleep. Keep praying and we love you all!

Sunday, March 7, 2004 1:21 AM CST

What to say, what to say. It has really been a day! Should I try and make this whole thing rhyme?--I don't think so, I'll run out of time!

I know, I know, off to the nut house I go. See what a little lack of sleep will do to ya?! hehe. Seriously now it has been a trying day. Maddy is turning being difficult and moody into an art form. She is very clingy and I feel as if I need to have HER amputated from my body! I can not even go to the bathroom with out holding her hand so she can always be touching me. Let me tell you that wiping becomes a very interesting manuever there. OK to much information. Seriously she is like PMS, menopause, and a nervous breakdown all rolled into own very cute little body, that seems to only function if she is physically attached in some way to you. God I love her but there are some days! She has been getting very deep with her thoughts and questions as of late and I am going to have to schedule an in depth session with her pastors for these! Yes Janna and Jeff you can thank me later.

Last night at the wonderous hour of 1am Maddy laid these questions on my over stressed and sleep deprived brain. Where in the heavens did she ever come up with all of this I will never know but here goes.

"Momma, tell me the story of baby Jesus." Simple enough I figure, a quick story and she will finally go to bed. So I tell her that Mary and Joseph went to Bethlehem and baby Jesus was born in a manger and shephards and wise men came and brought him gifts as he was the new king. Short and sweet so good night-right?! Heck no this is Maddy we are taking about.
"Momma, how can God be Jesus' father if he wasn't married to Mary?" Never saw that one coming. I am not to sure exactly what my response was but the next question was,"Were does Jesus live?" Easy one I thought- He lives in heaven with God-"Well where is heaven," ok-heaven is were all the good people go when they die, it is where God and Jesus are and when we die we will all go to heaven and live there together forever, and the bad people, people who hurt others, go to hell." So you are going to hell momma?" Ok -that I wasn't expecting, Maddy why would you think I am going to hell?!?,"Well mom, you do yell at me sometimes to pick up my toys and that isn't very nice to yell and it hurts my feelings so you must be going to hell." How do you like that coming from a 4 year old!!!!!! So I told her yelling at her was not going to send me to hell. Wringing her neck maybe, yeling no-(just kidding there-I thought it but didn't say it!) "Well you shouldn't yell mom because it stil isn't nice." So I told her not picking up her toys when she is asked to isn't very nice either. That was not what she wanted to hear so back to the God subject. "Why did Jesus die." I said Jesus died on the cross to save all of us so we can all go to heaven. "Well who put him on the cross and why did they want him to die?" -Do you see where my night is going here?!?!?!? "They all must have gone to hell momma." I tried to explain that they were all forgiven by God, that God gave his only son to die for us so we all may be forgiven of our sins and have eternal life."Well how can God be Jesus' dad if he isn't real, and he still wasn't married to Mary!?" I really need to pay more attention in church because I was really not prepared for this converstion with my 4 YEAR OLD in the hospital at 1am!!!! She also was not grasping the concept of heaven and that you just have to believe in God even though you cannot see him. Explaining blind faith is just not an easy task when as an adult I struggle with it. Having to go through cancer with Maddy has really been a strain on my already weak realationship and understanding with God. I question often myself who he is and where he is and why everything in life happens as it does. But to look down into those searching eyes of hers in the glow of her little night light as we lay together in her hospital bed fighting a neutropenic fever from chemo just hit me in such a way. I was frustrated that as a mother I did not have what I felt was a sufficient answer for her and all the questions I myself have came rumbling up in my mind. How do you explain such things that you do not understand, like cancer in a child, baby Jesus and the where abouts of heaven. I know all the politically correct answers to most everything I am faced with but those answers are not always the answers of your heart. With my children I want to nurture them and not prejudice them. I want to know for certain that what I tell them is always true and accurate. But in life so many things are shaded in grey and not much is concrete and solid. I have a hard time with blind faith, whether it be in God, in doctors, or life in general. Gotta love kids and all the inner turmoil they create huh? Maddy is a very deep and philisophical child that makes my head spin, drives me crazy, and amazes me all at the same time. She is forever suprising me with these sort of wonderful querries and I am never prepared for them. She will definetely be alot of fun in Sunday school next year don't you think? I pity her teachers. She is forever wanting to know how everything is made and what everything comes from, and forever why. I guess I should be glad that she is so interested in everything and really thinks about what she absorbs from others but there are sometimes I just wish a good night story could be about Sleeping Beauty and Prince Charming and not the relativity of heaven and hell in our daily lives and the existence of God Almighty.

Good night and God Bless you all and may you all get through the day with out yelling at anyone so you can get into heaven too-where ever that may be!

Thursday, March 4, 2004 11:58 PM CST

Fever, no fever, fever, no fever. We just can't make up our minds here. She spiked a temp at home and since her hemoglobin was 6.9 we had to come to the hospital for a transfusion and are having to stay for a possible fever. She just goes up and down, but is so fussy I have no doubt she needs something. She just finished her blood and will have antibiotics for atleast 48 hours. Maddy has really been a bear this week and has finally-thank god-fallen asleep. I was so hoping that we could just get thru a chemo with no fever. We are all so burnt out on the hospital scene. I can't wait for the day that I can live without 3 days worth of stuff packed and waiting by the back door just incase of a fever. Having a transfusion during a fever really sucks for Maddy. She gets vitals done about every 20 minutes. She just woke up crying and groping the air for me. I can't understand what she is saying. I don't know if something hurts or what. I hate it when she cries out at night and I don't know why.

I am tired but can't sleep. As usual. I am in a very complacent mood. Not feeling like talking, or reading, or really anything at all. Just kinda on auto pilot tonight. We've been watching old Walt Disney movies-Parent Trap, That Darn Cat, and Sleeping Beauty of course. Maddy is really snoring now and I think I am going to try and join her. Love to all.

Saturday, February 28, 2004 12:00 AM CST

We are home!!! It just feels so good to be in your own bed. Maddy felt so much better when she got home last night. I had bleached all day and the house was sparkling clean for her. My back and legs are killing me today though. Sometimes having a big house isn't the greatest!

Maddy's Auntie Pam wanted Maddy's praying picture back up so that I was more than happy to change it for her. It is also my favorite picture of her. Although after I changed the photo we lost Maddy's new Rainbow Bright border so Kim if you are reading this could you please put it on again. If not the flowers look nice too. I really wish I knew how to find new borders and add them to Maddy's site. Once again-if anyone can help me learn how then please let me know what to do or where to go.

Well Maddy is doing well and is home and happy to be playing with Donovan. Her counts are dropping and she will more than likely be bottoming out on Monday. We are already in a winter storm warning for Monday so hopefully we are able to get Maddy in for counts. Hopefully she wont need blood but she may need the gama gobulin treatment. She had a really awesome week as far as chemo goes. No real complaints of anything, in a great mood and full of energy. She is on the radio this weekend. Y94 fm in Fargo is doing a telethon to raise money for the Childrens Miracle Network and I did an interview and Maddy sang You Are My Sunshine. She was so cute. She will be played again today so keep your radios on! She really loved it and when she heard herself on the radio it was like she got all embarrassed.It was so cute. She did sound pretty good. I can't stand the way my voice sounds. You know it never sounds the same as what you hear yourself sound like. Good thing for you all it was a short interview! A good cause though. If it weren't for the childrens miracle network Maddy wouldn't have had access to movies games and art projects to help break up her day. They provide the workers, the toys, the family support. I couldn't have imagined not having them to help us through and Maddy just loved them all. One of the child life people would come through the door and her face would light right up.

Only 2 more chemos to go!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! And the next one is just a sleep over! We will have chemo on March 15th and then fluids to flush over night and then home in the morning!!!!!! YEH!!!!!!!!!! I can't wait. then there is only one. It is the 5 day one but it will be the last. They are going to have a party at the hospital for her on her last day and I wonder if I brought margaritas up there if we would get in trouble?! I could have an "on duty" pitcher and an "off duty" pitcher. Some of the nurses thought that was a good idea so maybe. They will have food and decorate her room and have a banner for everyone to sign saying Maddy is done with chemo. She right now is medically in remission!!!!!!!! YEH!!!!!!!!!!!! Her last chemo starts April 5th. Donovan turns 6 April 2nd so we will have his party that weekend before her chemo. He was signing grandmas birthday card yesterday so I can get it in the mail and he started jumping up and down," Grandmas birthday, Grandmas Birthday-Yahoo, Yipee, Yeh" I was like I am so glad you are so excited for grandmas birthday and he said," Well yah mom because them I'm next!" His birthday is the next birthday after grandmas and he knows this. It was to cute. He started racing around the house yelling,"I'm next, I'm next!!!!!" I am kinda dreading it though. More toys!!!!!!!!!! I need a bulldozer now the way it is to clean the living room with all the junk everywhere. I will have to look at outside toys. They both want roller blades but all we have is the pad outside our double garage and that wouldn't be so much fun to just skate around in a circle. Roller blades don't work so well on grass and gravel which is what we have an abundance of. I still have a month to decide right?! I do not know where we are going to go for his birthday. He hasn't said anything about that yet. No Chuck E. Cheese though. Mom is to much of a germ a phobe right now to bring Maddy there.

Well the men of the church are going to sponser a team for Maddy for the Relay For Life walk coming up in May. So please e-mail me if you would like to be on her team. If needed we will have 2 teams, I would sponser the second or if someone else could help that would be great. Right now we have 5 members and need 10 for a team. I had a dream the other night that Maddy lead the survivors lap holding Pastor Jeff's hand and Pamela's and they all had thier roses and t-shirts on and Maddy was singing you are my sunshine, skipping along in the fading sun. The light catching the gold in her few strands of hair she has that ring her little bald head and it looked as if she had a halo. It was beautiful. I know I am going to have to have a box of tissue handy when she starts her lap. I cry every year when I look at all the survivors. Right now I am crying at just the thought of all the suffering they have been through and how brave they are. They are all my hero's.

Now on a lighter note- Some ideas for her team theme. I thought we could do something that had to do with Sunshines, since you are my sunshine is Maddy's favorite song and we could be lighting the way for a cure, or since she loves to dress up she could be Wonder Woman, Saving the world one child at a time. Let me know what you think, or if you have a different idea I'm all "ears".

Well I must go and pry my husband out of bed. Not that we have anything to do but it is 1pm and he should atleast move from the bed to the couch, don't ya think?!?!?!?!?

Keep praying for our Maddy. We love you all. Holly

Tuesday, February 24, 2004 10:21 PM CST

All of Maddy's tests this week came back normal and clear. She also started chemo with the best counts she has had so far. Go figure that she would bounce back so well. I really don't know what to think. I learned of some information that has really changed my view of Maddy's dr. I can not share what it is as he did not tell me himself and it is not my place to say anything about his personal life at all. I do see him in a different light now though. It doesn't change the fact that a mistake was made in her care, but right now that doesn't seem to have affected her any. He did tell me this will more than likely help her not to have a reaoccurance of her Ewings but does increase her chance for heart problems later on. That is a heavy scale to wiegh there. I did ask that it be docummented in her permanent medical file that this happened and to get a copy of it before we leave on Friday. Her dr acted a little taken aback at my request but said that was fine. I did not get upset at all, just expressed my concern. He was very frank about it and validated my concerns but did not think in his gut that this was going to harmful to her but he could not give me any gaurantees. I felt better after everything came back so well. I don't know why I feel he dislikes us so much. I hear alot of parents say they think he is a very good dr and the kids love him but the parents have a hard time connecting to him. Maddy does love him and I think he is a good dr but still feel maybe he holds some anemosity towards us from the beginning conflicts. I could just be overly sensitive due to all our life stress and taking him the wrong way. I tend to be a people pleaser and do not like conflict, nor do I like the thought that someone may not like me because I can be outspoken and when it comes to my kids I am a momma bear protecting her cubs. I get very protective of them and take to much to heart. I think all parents are that way to some extent.

Maddy has been doing wonderful so far this week. She went to great grandmas today and actually ate a very small amount of great grandmas wonderful chicken. I peeled potatoes and went and sat down on the couch and then great grandma said ,"You girls better get your hands washed for dinner," so I went into the kitchen and told her I had the strangest thought that I had been snoring and she said well probably because you were! I can't even remember the last time I dozed off. I am always so wound up I can never relax enough to nap. I must have slept for about half an hour. Last night Maddy was watching her Angelina the ballerina mouse movie, again, and I closed my eyes. I woke up about 20 minutes later as the movie switched off and I must have slept hard because I could not go back to sleep until sometime after 2am. I was up and wide awake. Then Maddy was up several times to potty so I didn't sleep much last night.

She has been in a great mood this week and Thursday am at 9am she is going to sing for the Childrens Miracle network telethon on 94 fm. I did an interview for them today so I will be on also sometime over the weekend. Hopefully I don't sound to stupid and as for Maddy I have no idea what she is going to sing. She will more than likely start dancing which will do the listeners no good at all!

I also met a wonderful family that has raised money for Maddy's make a wish trip. The mom Michele and her daughter Lindsey came up to meet us yesterday and made Maddy a beautiful blanket and scarf. Lindsey is in remission from her cancer and went on a make a wish trip after her treatment in 1997. She wanted to help another child go on thier dream trip so raised money through her family and friends. They are such wonderful people and Maddy instantly took to Lindsey. She is a beautiful young girl and I really enjoyed her mom. I look forward to getting to know them better.

Well I better go to bed so I don't over sleep and forget to take Donovan to school again. Keep praying and thank you all. Love always-Holly

Friday, February 20, 2004 7:55 PM CST

Have I ever mentioned before that our life sucks?!! Does anyone think that I worry unecessarily about things that probably will never happen? Do you think that that I am to pessimistic and overly cautious- maybe so, but with good reason.

Ok-Maddy's scans are clear-yeh-short pause to rejoice, now the bad news. Remember when Maddy started her chemo and she was on the 2 week protocol up until her surgery and then we had to go to the 3 week protocal because of her hands and feet peeling?! Ok, on the 2 week protocal you have 6 chemos before surgery and 8 chemos after, 3/4 of the way thru you stop one of the chemo drugs, doxorubicin, and then you are only in 2 nights instead of three on the alternating chemo. On the 3 week protocal you have 4 chemos before surgery and 10 after, and you also stop the dox 3/4 of the way thru. Well when we were getting Maddy's scan results the PA that works with our dr made the comment that we only had 5 chemos to go. I said no way we have 3 left and thats it. She thought that I was not counting the actual # of chemos Maddy has had and was going by weeks and not taking into consideration that it takes longer to finish chemo on the 3 week protocal than the 2. I could not get her to understand what I was saying so she told me to talk to the dr. It just so happens that he was walking through as we came out so I asked him. Does the actual number of chemo treatments increase by going every 3 weeks or is it a standard 14 treatments regardless. He said it is 14. So I said than Maddy is on the wrong schedule because you have her down for two extra chemos which puts her schedule off for when she stops the doxorubicin. I got the no you are wrong at first and then the nurse that had brought out Maddy's protocal started counting the actual # of chemo treatments she has had. And then recounted and then counted again. Are ya all getting were I am going with this?!?!?!?!?!? The last chemo she had should not have had the doxorubicin in it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
There is a toxicity level that you should not reach with the dox and so it is stopped at that level because it is a chemo drug that causes severe heart damage in some patients. Had I not been sick 2 weeks ago and taken her in for her chemo I would have known something was off when they brought in the orange chemo but I wasn't there and I didn't realize they were off her schedule, Donny didn't know. Meritcare said that they got the revised protocal from Mayo and didn't catch thier mistake. I knew something was wrong by how hard that last chemo hit her. Anyone who has talked to me in the last 2 weeks has heard me say that something was off because she never reacted to chemo like she did the last one. That would be why. Her dr said they can't say that this didn't hurt her but that it would be hard to prove that any future problems could be directly linked to this extra dose of doxorubicin. He doesn't think it hurt her because even though she got pneumonia that she is doing very well. OK, I am not going to say that I am not very upset here. I was so mortified last night I couldn't hardly move at all night. Every what if you could think of ran through my head. The damage, what ever it may be has been done and I can't do anything about that. Should I be mad at Mayo for sending out the wrong chemo schedule or Meritcare for not checking it. Or both, or myself for not catching it sooner and stopping her last treatment. Hopefully this does not increase her risk for secondary leukemia. Hopefully she does not suffer congestive heart failure at the age of 15. I really, honestly do not know what to do about this. I have been told to get a lawyer but I do not know if that is right. I do not want to have another conflict with Meritcare this close to the end of treatment. I want to scream. I do not know how much more I can take. I was so numb last night I couldn't even cry. I sat by Maddy's bed as she slept and prayed, my body shaking and my head pounding, I prayed.

I don't know why these things shock me so much when they happen because I am always expecting the worst and when it happens you would think I would handle it better, but I am always so stunned. I can't handle the stress of our life anymore. I don't feel like I am functioning anymore, just merely existing. It gets hard to breathe sometimes. I can hardly talk anymore, I can't have an intelligent conversation with anyone anymore as my brain just keeps wandering off mid sentence and I just sound stupid. This has had such a toll on all of us. Donovan is struggling so much right now. Every time Maddy goes to the hospital he starts melting down and since we have been up at the hospital alot it has been a very difficult month. Now Maddy goes in for chemo on Monday for 5 days and will have to have a battery of tests on her heart and blood work to test her body for toxicity. It is going to be a hard week for everyone. I have considered just pulling Donovan out of school because I just can't take anymore of anything. But I know that is not the best thing for him either but it is a struggle. I feel so helpless all of the time. Powerless over my life and what is happening. I don't know who to trust anymore. Even the nurses seem to get wierd after a awhile when you have been up there so much. I know I sound paranoid but you have to admit alot of things go wrong too often no matter where we are.

I could use your prayers and thoughts of what to do right now. I am still in shock and not really reacting yet. I am sure I will get angry sooner than later about this but right now I am just numb. Maybe I am over reacting but to me an extra does of chemo on a 4 year old that she shouldn't have had just really freaks me out. Please pray for Maddy that this did not hurt her. I will be up with her most of next week. Donovan has an appt on Wednesday so I will most likely be home Tuesday night unless Maddy is scheduled for a test then I will stay, but I should be back to the hospital Wednesday night.

Last night I lay in bed and I thought of going to our church and kneeling in front of the alter and praying to God to please ease up on my family before we all fall apart. I pictured in my mind the light on above the alter and the rest of the sanctuary dark. It was so peaceful. There is just something about a santuary that just eases your soul. It is the only place I have been that I have been totally alone in but not felt alone. I resisted the urge to cal pastor Jeff to let me in so I could try and find peace in my mind. I didn't know if he would appreciate getting woke up in the middle of the night to let me into the church. Maybe I should have. I found comfort in the thought of just being there in my mind. I did finally fall to sleep after that.

My niece and nephew were out today to play so Donny and I got a break from having to be the sole entertainment for them. Maybe they will come out tomorrow to for awhile. Maddy and Donovan miss them so much. When we sat down to dinner tonight Donny looked around the table and said," Doesn't this feel normal?" I wasn't sure what he meant and he said to sit down for supper with a table full of kids just felt so good, so normal. I can't tell you how much we have missed having them out here everyday, a part of our lives everyday. I hope we can get that back. We can't go back to foster care but we need to have all of our "kids" back with us. I just didn't realize how much we were all missing them and the feeling of having a full house again.

Speaking of which my brother just came and I think Karla to so I must go. Please let me know what you think about all of this. Please pray for us. Holly

Monday, February 16, 2004 10:55 PM CST

Well I think I have gotten over the shock of my white hair. I haven't found it's friends yet but now I look every morning. I have so much else to do ya know! Maddy had counts today and they were all good. No transfusion. Thank God for that. She wanted chips and cheese today from Paradiso so we took her in and she actually ate quite a bit by her standards so it was worth the trip to Fargo. Sometimes you just have to go and do something fun. There is a sculpture exhibit at the museum we went to see but of course they do not open the exhibits on Monday. I should have known. I never thought about it being a holiday as Donovan had school but they are closed Mondays regardless so maybe on Thursday after her tests we can go and unwind. She has been doing pretty good. Not real tired and coughing very little. She is in a much better mood than she has been lately. Donovan went to his cousins to sleep over last night. I went to watch the kids so my brother and his wife could go out. My niece and nephew went to bed and went right to sleep but Donovan was not cooperating and didn't conck out until 11pm. He was up at the crack of dawn so went to bed right away tonight as did Maddy. Now if Donny and I could only go to sleep when we needed to life would be good. Atleast we wouldn't be as tired. We don't really get time to talk when the kids are up so it is late at night when we start taking about all the fun stuff like money, taxes, our future. No stress there!
I feel antsy tonight. I don't know if it is the scans on Thursday or what but I just want to go do something but nothing. I know that doesn't make sense. I should just try and go to bed. Maybe read for awhile or go watch the kids sleep. That's kinda like making plans to watch paint dry. They just look so peaceful and angelic. It is the only time you can enjoy them quietly and reflectively. Maddy was still awake last night when I got home around 12:30am. She was waiting so she could hug and kiss me good night. When she fell asleep I just looked at her in her big girl bed. She looks so small. But she looked peaceful. With Donovan being at my brothers she actually slept in this morning and was in a good mood. We all enjoyed sleeping in.
Nothing more really here to chat about. That's good for once heh?! All our love to all of you. Good Night!

Saturday, February 14, 2004 11:40 PM CST

God I hate computers, 30 min of typing and it just all dissappeared! UUGGGGGGHHHHHHHHHHHHHH!
Any who, It's happened. I can't believe it but it's happened to me. I just never thought so soon . But than again with these kids I should have known. It was inevidible. I just thought I had more time. But today of all days, there it was- my first grey hair. And not just grey but ultra white!!! I have been searching my curly locks all nite looking for it's friends so I can rip them too from thier premature perch on my blonde(ish) head. They are hiding but I will find them, they can hide but they can't run!!!!!!!!!!!!!!!
Do I sound nuts or what. 6 days at the hospital with Maddy will do that to you. She was so very sick the first 3 days, didn't play, move or even want to watch TV so that is why I stayed, I new it was something major for her to act that way. Well Thursday she perked up and wanted 210% of my attention at all times. Finally Thursday nite I couldn't stay in the room anymore so I let her out to run the hall after all the guests had gone and she chased the nurses for a good half hour. She was laughing and giggling. Well this was not looked upon so favorably by a few, namely my other half, but as it turned out the dr told me the next am that by letting her run she had coughed up almost all of her pneumonia and it was the best thing I could have done for her. So there!!!! Anyway, she did really well with her therapy treatments on her lungs and even slept thru most of them. Her counts went up today so we were home around noon. She will be on antibiotics for a week and then chemo starts the 23rd. I am taking her in for counts Monday as her platelets were down to 18 today and they transfuse at 15 but the dr said he thought they would come up now on thier own, but I don't know. She was kneeling on a foam pad in the tub and bruised both her knees so she may be back to Meritcare on Monday for a transfusion. Her bone scan is on Thursday, 7:30 am counts and an 8 am dye injection and bone scan at noon. Chest x-ray in there somewhere and then a 3 or 4 pm appt for the results. Another long day. She has been complaining alot about headaches lately so I am not going to be suprised if he orders a brain scan or MRI after her bone scan. It is always something. We have to do a 24 hour creatinin clearance test before her next chemo can start and I have a feeling the last 3 chemos are really going to be hard on her. But she still is doing well despite all the bumps in the road here. She is wonder woman ya know.
There is a woman I work with up on Maddy's floor this week. She brought her husband in with pneumonia and ended up finding out he has metastasized cancer in his lung, liver and Kidneys? unsure of the last one, maybe it was the spleen. Anyway my heart just went out to her. She had that glazed over look in her eyes like the world is moving to fast to stop it and get on, just a lost and helpless look, I know that feeling all to well. I really hope that all of you will pray for her and her family as she starts this nightmarish journey through cancer with her husband. I just really feel so aweful for her. She is very frightened.
God grant her the strength and serenity she will need as she tries to accept and heal from this tragedy in her life. Surround her with your love and please show her the out- pouring of kindness and support that we have recieved as we try and get our Maddy well. I know there are many people who care for her and please give them the strength to support her as she needs.
Well I will end on a lighter note:

The future is full of doubt, indeed, but fuller still of hope- John Lubbock

Fear knocked at the door. Faith answered. No one was there.- Unknown Author

Keep praying for our sweet Maddy that she makes it through these last 3 chemos and makes it to CURED!!

Thank you all for your continued love and support of us. It is all of you that have gotten us this far. My love and prayers to each and every one of you. Holly

Thursday, February 12, 2004 7:15 PM CST

I am sorry I have not updated sooner but with Maddy spitting up, throwing up, having diarreah, crying, I just haven't been able to. I also did not have a diagnosis until today so I didn't want to speculate. Maddy has pneumonia in her left lung. Her temp keeps going up and down and she continues to throw up. She has totally not been herself. She shivers and sweats and cries. I have been up her all week with her and will stay with her until she gets to go home. She has been on antibiotics all week and today started respiratory treatments. She has her bone scan rescheduled for next Thursday but the dr's said they are not really worried about it. I about had a heart attack when they told me that there were spots on her lungs. It is the pneumonia but no parent of a child with cancer ever wants to be told that spots showed up on the lungs in an x-ray. She might get to go home this weekend if her temp stays down and her counts start to go up. She stayed at 0.1 all week which is almost totally wiped out. She finally went up to 0.4 today so maybe she is going to start getting better now. She was playing a little today and cried when dad left tonight. Donny brought us up some more clothes and a few new movies. She didn't want him to stay but didn't want him to leave either. She is playing with one of the volunteers right now so that is why I am getting to updatebnow. I will answer e-mails when I get home. Thank you for all the prayers. I know pneumonia isn't the worst thing in the world but when you have no white blood cells it can be fatal. I never take anything for granted anymore. I will try and update tomorrow but Maddy needs to go potty and have a bath as she has peed her pants. Our love to you all. Keep praying.

Monday, February 9, 2004 11:44 AM CST

More stress and no scan. Got Maddy up this am to get ready to come in for her counts and the scan and she started to throw up gray and dark green fluid. She was also burning up. When I got her to Meritcare she had a 103.1 temp and threw up again. She is to sick to do the scan. Her white blood count is already at 0.1 which is very low for her this soon out of chemo. She will have a blood transfussion today as she is already bottoming out there also. This chemo took her down very quickly and was very tough on her. She has been very, very irritable this week. She just wanted to be held all day and night. I kicked Donny out of bed one night and snuggled her but Donny only went for it that night. I would have kept her in my room this whole time if Donny wouldn't have complained. It's sounds dumb but I MISS HER at night. Sometimes I wake up in the middle of the night and want to hold her so bad my arms actually ache. I get up and kneel next to her bed and watch her sleep. I'll kiss her little fingers that stick out from under the covers. When she had her feeding tube put in she gave up her pacifiers as they felt wierd with the tube in her throat, but she still sucks at night as if she still has one in her mouth. I call it her air sucky. I'll put my fingers on her lips and she will kiss my fingers. In the glow of her little butterfly nightlite I trace the outline of her face so gently with my finger. And I pray that she be healed. Sometimes she talks in her sleep and she will whisper for me. Once she sang a tune I couldn't quite make out. Sometimes she starts to cry and will say it hurts , it hurts. She is asleep and I don't want to frighten her by waking her but I would like to know what hurts that makes her cry. Sometimes I just sit by her bed and cry silent tears for her. Listening to her breathes in between the sound of the feeding pump, almost holding my own breath so as not to make any noise that might disturb her. There are times when I am just overcome with emotion and sing to her softly. She will often start to smile when she hears my voice but I am not sure if she is awake or not. Right now she is asleep on the bed and I want to lay down and hold her but I know this would wake her up and she really needs to sleep. We will be here for at least 2 more days all depending on how long her fever lasts and how long it takes for count recovery. It is early for her to be so low so we coud be here all week. I hope not but am not going to plan otherwise. Well Donny is trying to call in the room so I better go and talk to him, fill him in. Please keep praying for Maddy and us. This just keeps getting harder.

Saturday, February 7, 2004 12:07 AM CST

Sorry I have not updated sooner but I have irritable bowel from my fibromyalgia and it is irritated by stress, soooooo since this has been such a stressful week I have spent most of it in the bathroom. Today I am alright for the moment so I will bring everyone up to speed. The sharp points on her side are the gortex coming up under her skin. They are not breaking through the skin or causing redness and only minor pain so we will keep an eye on it. If she had any fat on her at all then we never would have noticed but because she is so skinny you can she the gortex as she moves. It is not dangerous the dr. says and we will either wait and see if she puts on any weight after chemo which would cover up the gortex better and she would be fine or we will have to wait until chemo is over and have her return to Mayo for another surgery to fix the gortex. She will have to go back to Mayo in April anyway as she started protocal there and she needs to finish up there and then she will see Dr. Moir for life for her side and the gortex. We can do all her scans at Meritcare so it is not so much time and running around at Mayo. That helps anyway. I am still nervous about Monday but Dr.Kobrinski said he is not really concerned as he thinks her back pain is from how she will only sleep in her stroller when she is at the hospital but is doing the scan anyway beacuse she does complain of back pain at home and during high counts when she is not on growth factor shots that can cause back pain. I am worried anyway. It got really quiet in the house so excuse me while I go see what my two heathens are up to.
God those two amaze me-fighting like cats and dogs for two weeks and now Donovan made a bed on his floor for Maddy to lay on and he is cuddled up with her in his room watching Rainbow Bright with her. It is so precious. I can't believe Rainbow Bright is making a comeback. I watched her when I was a kid and the Popples-Does anyone remember them too? The video store has the Popples movies and Rainbow Bright and about 20 care bears movies so we are keeping them in business this year. Maddy is all of a sudden into Rainbow Bright so we rented her some movies for the weekend. I'm saving one of them for Monday so she has something new to watch as she has her scan. Normally they sedate all kids having the bone scan but if you put a new Movie in for her she will lay perfectly still for the whole 45 min scan as lomg as mom holds her hand and watches to. She is really very good. She even had 1 MRI without any sedation that turned out. I am hoping she will be in a good mood as her counts will be dropping by Monday and when she doesn't feel good she just cries. She won't have any food or drinks that am just incase we have to sedate her. She really had a rough week last week. I have never seen her like that. We went to the store to find her a rainbow brite movie -which they didn't have so thank god we can rent them!- because her dr promised her if she would cooperate and talk to her then mommy would buy her a Rainbow Bright movie! Thanks alot as no stores carry the movies. But even so Maddy didn't want to go shopping , not even for a toy for her, she just wanted to go home, so you know she was sick to not want to shop. Her ultimate favorite thing to do! It's things like that that make me worry. When she doesn't want to do something she normally begs to do you know she is sick. Donny went to go get the mattresses for the kids beds today. He really needed the break and I did to. We have spent almost an entire year together 24-7. I don't know about you all but I don't think any two people whether they love each other or not should ever spend that much time together. You start getting the roommate syndrome where little things you never really noticed before just bug the hell out of you. And we have no escape. We can't afford anything. We have already had 2 of our ccards close our accounts. It's starting now. Our life just keeps spinning out of control and there are no breaks. I am going to do an interview on Monday for the radio station as they raise money for the Childrens Miracle Network that donates all the fun stuff Maddy gets to do up at the hospital. I tried and Donny tried to do the interview at the hospital while Maddy was having chemo and she just does not want anyone to talk about her being sick anymore. She just melted down both times so we are doing it at the radio station while Maddy stays with great grandma. One of the questions is how did it feel when the dr's told you it was cancer. I almost started bawling. I am going to have to ask how graffic they want me to be because honestly it felt as if someone had reached down my throat, grabbed a handlefull of my organs and tried to pull them back out my mouth. The room started spinning and my hearing became real fuzzy. There are just somethings you don't ever forget. I knew it was bad when we walked up onto the 7th floor and the nurses were all huddled together at the far end of the hall, all with tears in thier eyes. I thought to myself that this really must be bad if chemo nurses who see kids with cancer everyday are crying about Maddy because they had seen her x-ray. My heart bottomed out and I became numb. The impulse to grab Maddy and run was at times so over whelming I had to hold on to the bed so I would not do it. It's like being pushed into a darkness and you do not know where you are, what you are standing on or if you are even standing or falling, or what is happening. All you know is you have this very sickening feeling crawling up from the pit of your stomach and you are so very afraid. A fear you couldn't have imagined in your worst nightmare. And with that fear your head spins. You cannot think. People talk and you can't understand what they are saying but you don't ask to have them repeat anything because you are afraid they would think you were not paying attention and at such a critical time that would be unexcuseable. The brain fog last for days and keeps coming back. I'll never forget the way Maddy looked up at me with so much terror in her eyes, brimming with tears, and asking me if she was going to die. NO PARENT SHOULD EVER HAVE TO HAVE THIER CHILD ASK THEM THAT! EVER!!!!!!!! I smiled and said of course not, but something broke in me that day. Something I am not sure I will ever be able to identify or fix.
Well after that nice trip down memory lane I think I will go before I start crying and Maddy comes in and sees me. She gets very upset if she sees me upset. So I try not to let her see me get to upset. We are going to make Valentines for Donovans class and the nurses at the hospital today. The kids just love the hearts and red, pink and white paper we got for the decorations. They are really getting into sharing their love this year as they call it. Keep praying for us and Thank you for everyone who cares and prays for us. I will update Monday when we get home from Meritcare and have the scan results. Probably not till after supper. We love you all.

Wednesday, February 4, 2004 10:02 PM CST

God my stomach is turning tonight. Maddy had a real rough week this week with chemo. She was very, very crabby which is not so typical of her. Today I went up to relieve Donny and bring Maddy home from chemo. The Dr. scheduled a bone scan for Monday because of her complaining of pain in her back. Please pray that there is nothing growing in her back to be causing the pain!! My hands are so shaky I am having a hard time typing. Tonight when we were getting her ready for bed I felt a couple of sharp spots along her side were her amputation was. When I looked at her side you can see something poking out along her incision site. I immediately called her Dr. and am taking her back in tomorrow to have him look at it. We are thinking maybe her gortex that is covering her amputation site is coming away from her ribs it is attatched to so she will probably have to have a surgeon look at her. God please let it not be anything serious. I can't imagine her having to go through that painful surgery again and I don't know how that would affect her chemo schedule. I know how very important it is to stay on schedule and we are so close to being done. I am very anxious right now. Scared. My mind is going 100 miles an hour right now with all the what if's. Please pray this is nothing serious. God, please don't let there be any tumor growth anywhere. Let my baby recover and finish chemo and be alright. She has been through so much. Tomorrow is going to be another scary day for us and Monday when she has that scan. My hands just won't quit shaking. I feel so drained. Maddy is already really crabby and not feeling well with her chemo and she is not going to be happy to have to go back to the hospital tomorrow. She started coughing this week to. I don't know if it's just a cold or what. So far her lungs sound clear but we are not out of flu season yet so pray she doesn't get something in her lungs. I feel numb. There is just to much stress all of the time. The last few weeks I had dared to think about the future and make plans for us post chemo. I just don't know what to do anymore. Nothing feels right. I am just on edge all the time. Maddy really needs alot of positive energy to come her way. We all do right now. It's a good thing I got some sleep this last weekend as I don't think I will be sleeping much until the scan results on Monday. I'm so scared for my baby. I want to protect her from all of this pain and I am just helpless to do so. I just don't even know what to say. With these little bumps in the road here I feel like I am falling apart. My whole body feels like one big knot. Please pray for Maddy. We can't go backwards now after we have come so far. I need her to be alright. I need strength for tomorrow. I am going to take her in early as it could take all day to get her seen by everyone. I will try and post tomorrow what I find out. I haven't had the strength this week to write to anyone or do anything. I am so suprised I had the energy to get the house all bleached for her to come home today. It has really been a rough week for everyone and it is only Wednesday.

Dear God, Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. And please God, give me strength and heal my baby. Amen

Monday, February 2, 2004 12:58 AM CST

Maddy is up starting chemo. She cried this morning when I got her ready to go. She wants to be done with it so much. She just cried "I don't want to go anymore momma. Why do I have to go anymore. Please momma I just want to stay home with you." Heart breaking ain't it. Donny had to take her today as I just have not felt well. I finally made it out to get groceries on Saturday but was so tired when I got home I couldn't hardly stand it. I slept all day yesterday. I was maybe out of bed 5 hours total for the day. Today I got Maddy ready to go at 5am, went back to bed until 7:30am took Donovan to school, came home by 9 and was back in bed until noon when Donovan got home off the bus. Now it's 1:30 and I can hardly stay awake! I don't have a fever, runny nose, cough, headache, stuffy head, sore throat, nothing. I am just tired. I can hardly function. It made me feel so bad not to go with Maddy this am but I knew I would never make it through the day feeling like this. I have been trying to stay away from her so I don't give her what ever I'm fighting not to get. I always take her in for the start of her chemo and when I just called up there she was crying she missed me. If I thought I could stay awake for the drive I would go be with her. My mom is up there playing with her now so atleast she not crying for me now.
Donny will probably stay up with her this round unless I feel better tomorrow, then I will go up. Atleast it is only the 2 day chemo so not to bad. She should be home Wednesday afternoon. My mom will give him breaks as needed and he can go to great grandmas and take naps.
Well that is all I can write for now. The screen is getting blurry and I can't keep my eyes open anymore. I have to go lay down. My love to you all. Keep Praying.

Thursday, January 29, 2004 12:15 AM CST

Well I have gotten nothing accomplished this week. It is to damn cold!!!!!!!!!!!!!!!! I do not function well at all in this -50 below weather. Neither does my garage door. I need to get a new one. This one is as old as our house and just couldn't handle one more cold winter. We will be having a memorial service for it as soon as it warms up. Thankfully Donny can pry the door open and get my car out now. It wasn't wanting to budge the other day.
We went to the luncheon at the college on Tuesday and the students presented Make-A-Wish with the fundraising check and then totally surprised us by presenting us with a check of everything they raised above and beyond what Make-A-Wish had asked for. They really should have warned me to bring tissues!. the students at Mayville State are really wonderful and we just can't thank them enough for everything they have done for us, and the whole community for that matter. I have said it many times but we feel blessed to have ended up here and to have so many wonderful friends. The donation will get us through another month and that means so much to us. It gives us alittle more time to try and figure out what we are going to have to do. Gail from pizza hut brought the kids breadsticks-their absolute favorite- and it was just and honor to be there. Maddy is so pumped for her trip. When it will be I don't know but she is ready I tell ya.
I never made it in to town Tuesday to get my book and meet Dave Pelzer as it was just to cold and the weather was turning. There was a no travel advisory out so I figured I had better stay put. I was feeling very run down and needed to rest anyway. Donovan never made it to school on Wednesday as the snowblower was froze and wouldn't start and the garage door was stuck. So I cancelled all our appts for the day and made homemade chicken noodle soup instead. I slept most of the day and drank alot of orange juice and tea. I feel much better today. I am still not motivated to go out in the -30 below weather but atleast I feel better. Tomorrow it's only supposed to be -18 below so maybe I will get to town then and get groceries. As long as we have milk and bread I can put it off, right?!
Maddy went in for counts today and everything looks good for her chemo on Monday. For those who lost count it is #11 of 14. So after this one there will only be 3 left!. God I can't wait! Keep praying she keeps doing so well and that this monster never comes back. She has been getting back to her self and eating a little.
There is a young girl who is fighting a cancer so rare no one knows how to treat her as it does not respond to chemo or radiation. She is very lonely and doesn't think anyone cares about her as no one signs her guestbook very often. So I am asking all of Maddy's faithful followers to visit her site and tell her you care. Her mom is really struggling with the frustration of not being able to get her daughter any treatment(she is not on anything at all for her cancer now as no dr wants to take her case!)and is a single parent trying to do this all alone. They all need your prayers and support. Cancer is terrifying enough even with treatment but to know your child has a deadly cancer and there is nothing at all being done for her , I just don't want to imagine what that would feel like. The main website is kept by the mother and the blue diary is written by Katlynn herself.

www.caringbridge.org/nc/katelynntreakle and
www.caringbridge.org/nc/katelynnsbluediary

Please also stop by www.caringbridge.org/sc/alexhaigler and give his mom some hope. Alex is 4 and is touch and go right now from many complications of his relapse of leukemia. They really need your prayers as they are trying to get him off the ventillator before it's to late for him and he is not doing well. When you visit these sites please leave a message in the guestbook, and tell them Maddy sent you. Thank you.
If anyone knows how I can add music to Maddy's web page or animations or more photo pages please let me know. Some of the websites I visit are just awesome and I would like to add to the great stuff Kim has already done for me.
Well I must motivate and do something today. You are all always in my prayers. And remember-Wonder Woman Saves The World!!!!!!!!!

Monday, January 26, 2004 11:34 PM CST

Maddy didn't have to have a transfusion on Saturday! Her platelets stayed at 22 and they don't transfuse until they drop to 15 so we got to leave. We had a bugger of a time digging out today after all that snow this weekend. Donny spent about 4 hours behind the walk behind snow blower to try and get through the 5ft snow drifts so we could get Maddy in for counts today. Had hoped for some help today but it didn't come so did what we could. Our driveway has already blown over again and now with the temps dropping to around -20 below our garage door won't open. So not sure if we are going to be able to get out to get Donovan to school in the am or not. God I hope so as the 2 of them about drove me nuts today. It's to cold to go outside and they have been cooped up in the house for the last few weeks with Maddy's low counts and today they just bickered! I spent alot of time sorting laundry and scrubbing clothes today. If you ever want to know how I am doing just ask me how much laundry I did that day and you will know! It's the only quiet place in the house.
The kids at the college that raised the money for Maddy's Make-A-Wish trip are going to present the check to Mak-A-Wish tomorrow at a luncheon so we will have to figure a way out of here by 11am atleast. Maddy's ANC is good it's just her platelets are still at 22 but they should start coming up now. We will do counts again on Thursday. Maddy is excited to go out to the lunch as now that her counts are up she can get out for a few days and Donovan is so excited to see Pam -one of the organizers of the college group. He says he is going to marry her. He's not at all afraid of commitment here and not the least bit concerned with the large age difference either! It is so cute when they have crushes. Be prepared Pam-he asked me today if you would give him a kiss!
Tomorrow David Peltzer is going to be at the mall in Grand Forks and I want to go and have him sign his new book for me. He is the boy in the book "A Child Called It". His life story is amazing and after reading his first book a few years ago I have really changed my attitude. What he has survived and over come in his life is uncomparable. I was fortunate enough to hear him speak last year in Fargo and he is amazing. Despite the cold I am going to go in and meet him. I could have at his program last year, hell I stood right next to him but just didn't know what to say. I still don't but will wing something. I do not get star struck and don't oh and ah over actors or singers, but I was speachless at him and all he represents. If you ever start to feel sorry for yourself just go read his book and that should cure you. Even now going through all that we are I have many, many emotions but non of them are pity. I do not feel sorry for myself or my family for what we are going through. Am I stressed as hell about it-sure, but I do not pity myself. I may complain about things as a way to vent my frustrations, insicurities, fears, but I honestly do not feel sorry for myself. I know things could be so much worse in so many different ways so I am thankful for what I have. Life sucks but you just have to keep moving on.
I would like to thank Kendrie's mom for my new found reason for insomnia. She has listed 101 caringbridge children and has challenged the people that stop by to visit all of them and sign thier guestbooks. I can't stress enough how important these guestbooks become to you when you are isolated and feeling down. They can literally turn your day around for you, so I have been up until 3-4am surfing the sites and trying to leave messages in the all the guestbooks. It is so heartbreaking and heart warming to see all these brave, young kids fighting for their lives. Over half of the sites I have visited so far have been little kids betwwen 3-5 years of age. And yet they are all laughing and goofing off in thier photos and just being kids. There is simply nothing greater than a child. Their ability to toughen up and go through so much and yet retain all thier life and humor, to stay good natured(Most of the time!)and come out at the other end of it still happy and ready to move on, live life without missing a beat. I am so in awe of them. Maddy amazes me every single day at how normal and typical she is through all of this. Her spirit and zest for life and her pure sweetness. I am totally in awe of her, everyday.
Well i should go now as it is almost 12:30 am. (I type very slow with 2 fingers so journaling is not a quick endever for me!) I must get up in the morning and need to go before I visit any more sites tonite and don't get to bed at all. You are always in my prayers!

Friday, January 23, 2004 11:01 AM CST

Well Maddy had to have counts done again today. Her platelets have gone from 162 down to 25 in 4 days. So needless to say she will have to have a platelet transfusion tomorrow. Her platelets have to be down to 20 in order to transfuse which by tomorrow they will be so off to Fargo again for the day. There was a dance-a-thon in Grand Forks at UND for the Childrens Miracle Network that raises money for the kids programs at the hospital. Maddy was asked to come and I was going to do an interview but we won't be able to go know with her anc only around 200. She is disappionted so I told her when we get home tomorrow after the transfusion that I would plug in her disco light, turn on her music and we would have our own dance. That seemed to do the trick. No fever signs but she has been very irritable this week and has had a headache everyday. I don't know if it's the weather-when it is windy and the pressure changes rapidly as it does when it is really windy it causes pressure in your head and many people get very bad headaches or migraines, also just having the temperature drop so much and be so cold can also effect a person brain and cause headaches- we have all had a headache all week so I think it is the weather and stress-Not that we have alot of that in our lives or anything.
I have been trying to figure out what to do this fall with our lives. Donny was going to go back to school but I want to go back to work and we can't do both so we are trying to decide which is the most feasable. Maddy won't go to pre-school and somebody needs to be with her. Donovan will be in school full time. I am torn also, I want to go back to work so bad it drives me crazy but I also don't want to leave Maddy at all right now. I know if Donny puts off school to long that workers comp will drop him and he won't get to go at all. He is worried that he will struggle to much with the work and if I went back to work in the pm when Donny would be home then he would never get an studying done and it would not be a pretty site at all.
Life is always so complicated.
The dr finally called back about Donovan and seems to think that the excessive sleeping is Donovans way of coping with the stress by just totally shutting down and sleeping. The bloody stools might be from constipation so he wants him back in in a few weeks to recheck. He did say that Donovans blood results showed Donovan had allergies-which ones he didn't know-go figure. Donny has severe asthma and I have been on Allergy shots since I was 5 or 6. My allergies are very severe, I am allergic to most everything so I am not suprised. Maddy was born with ezcema so she will also develop allergies. She is allready starting to develop one to animal fur which is one of my biggest triggers. Cats are worse than dogs for me but she petted the dog outside the other day and her face just swelled up. There won't be anymore pets for us unless it is fish. We currently have 4 dogs and 4 cats that are all outside in our shop and that is probably were they are going to have to stay. I won't be able to bring any of them back into the house. Since moving everyone out in July this is the first year I have not been on antibiotics nonstop all winter for sinus infection. Totally amazing for me.
How does everyone like Maddy's websites new look?! Kody's mom did it and I think it looks awesome. Thank you so much Kim!! Maddy hugging her very special carebear from our very special friend Sabrina on the pink background to match her bear and her dress. Perfect!!! And i love all the pictures you were able to fit in her photo album. When you have time kim you will have to teach me how. Thank you again so very much!
Well everyone is asleep now so I need to sneak off and get my shower for the day before Maddy misses me and starts crying. Our love to you all and keep praying!

Tuesday, January 20, 2004 3:32 PM CST

What a day, yesterday and today. Took Maddy in for counts yesterday around noon and at 1 went back for the results and of course she had to have a blood transfusion right away. I should have known. She wanted to nap on Sunday so I should have known she was bottoming out. No fever yet but we didn't get home from Fargo until after 11pm from the transfusion and fluids she needed. I had to get up early and go to a meeting at the school for Donovan. I never went to his parent teacher conference because Maddy was doing chemo and I couldn't get back in time. Donovan doesn't always give us our notes on time either so we didn't have time to plan for it. Right now he is rolling goo out into worms and has to show me every one and then pretend to stick it up his nose. Little boys think everything gross is hilarious. I'm not sure I have the stomach for raising a boy right now. I am atleast somewhat lucky in he doesn't like bugs. Especially spiders. I have never heard a more high pitched, peircing, blood curddling scream as I heard the other night when a piece of black lint fell off of our black shower curtain into the tub when he was taking a bath. When I got into the bathroom he was balancing on the edge of the tub with his arms on the back ledge and his feet on the front ledge of the tub so he could not move at all and was convinced there was a monstrous spider lurking in the tub waiting to get him as soon as he moved. And he screamed relentlessly. Now the good mother that I am had to pause for a moment to decide if this was indeed a Kodak moment or should I save the poor child from this deadly peice of lint! The evil mom took hold and I picked him up and plopped him back in the tub which resulted in him - quicker than I could blink- jumping right back into the position he was in screaming so loud my ears hurt. This time I fished out the piece of lint and showed it to him before throwing it away and helping him out of that uncomfortable position. His response to all of this?!-" I knew it wasn't real mom, I was just foolin ya!" God I wish I would have gone and found my camera!
Maddy had a good birthday and was tickled pink with the mail she got from her chemo angels today. Donovan even got a card from one of the chemo angels so there wasn't to much whinig and crying. Maddy was gracious enough to let Donovan open all the envelopes and I read the cards as she collected the stickers and other goodies she recieved. She feels so special when she gets mail. I save every card and letter she has ever recieved so when she gets older she can go through them all. Some I will use in her scrapbook if I ever get motivated to actually scrapbook. I just never seem to be in the mind set to do anything I would actually enjoy doing rather than spend my free days cleaning and doing laundry and whatching the same videos over and over again with the kids. Actually there are many craft projects I would love to do and maybe once chemo is done and we are in the lull period between scans, I will maybe get something done.
Can you beleive I am making plans to go camping with the kids! For those who don't know me I am not a camping person. I can camp with an air conditioned RV and a bed and shower/bathroom, but thats about it. And since Donny and I had to sell our motorhome a few years ago camping now means a tent and a sleeping bag. It's not that I don't enjoy nature it's just my allergies and fibromayalgia make "roughing it" very rough on me. But the kids really want to go so we are going to go with some friends of ours. We have spent the day at the lake and then gone home but the kids actually want to sleep in the "wild". They are so thrilled. Donovan is more excited about that than his birthday coming up. I offered to pitch a tent in our backyard and pretend the pool was a lake and we could build a sand castle in his sand box but for some reason that just didn't seem to do it for him! I can't understand why?! Sounded good to me!
This summer I am going to try and get Donny and myself more into the mind set of enjoying things like going to the lake to swim, or maybe down to the river to fish for the afternoon, cook out more and worry less. Try and do things more efficiently so we have time to enjoy more. You know we have never taken the kids fishing, camping, boating, hiking, and we have only gone to the lake once for a day with them. We spend all our time cleaning and "deciding" how to finish up the projects in our house that we are missing out on so much life. I would sit at work last summer and listen to everyone talk about going to the lake or out to the families for a BBQ and feel envy for them because we were always worried about money and the yard and the foster kids and everything else. This year I am going to try and focus on the quality of time we spend together and doing things that are going to create good memories. I had a dream the other night that I was old and alone in a nursing home and I was looking back at my life and all I could remember was cleaning all the time and always telling my kids that I would spend time with them in a minute but that minute would never come and they would be off to bed before I even realized the day was gone. And then they were grown and gone and I never had any fun memories. I worked every weekend, they were in school all week. I missed my chance. It was a very sad dream, one I don't want to become a reality. It is really hard when you have a vision of how you want your life to be but no matter what you do your life will never be that, to redefine your goals, dreams, ambitions and attitude toward, life, friends, family, work,faith, is well - daunting. I have a hard time letting go of what I thought was important and accepting only what is. I can't stand things that are so out of my control and to accept that in my daily life with Maddy's cancer has at times almost destroyed me. But I am gaining comfort in my own skin(granted I wished there wasn't so much of it!)and my goal is for more hope and less hype.
I really miss having plants in the house. they are unsafe as the soil harbors mold spores that could be deadly to Maddy but the atmosphere just isn't the same with out a plant or two. I think I need to buy a fake one just so I have some color. Now that christmas is over and all the decorations are down the house seems very bare, I took down alot of my decorations when Maddy was diagnosed do there would be less to dust and clean. I knew I wouldn't have time and Donny isn't so good at dusting nick nacks. All of my cows that I collect are all missing linbs and ears from his attemps. It looks like my herd was in some horrible farming accident. I have a little graveyard of body parts by my sink. Someday i hope to have steady hands again so I can try and re-attach them to their disfigured owners.
Well my hand is cramping and burning so I have to stop. Lets pray we beat the fever this round and have smooth sailing the rest of the month to the next chemo. Only 4 left!!!!!!!!!!!!!!!!!!!!!!!!!! Love to you all!

Sunday, January 18, 2004 5:37 PM CST

Happy Birthday to Maddy, Happy Birthday to Maddy!!! She is 4 years old today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She is taking a nap right now, such a mean mom I am to make you nap on your birthday but thats life. When she's 40 and I make her take a nap she will thank me for it! It has been a very quiet day. She has been feeling good, eating and drinking. No real spitting yet. She is just doing fabulous. We took her to see the movie cheaper by the dozen yesterday. She wanted to go see the Cat in the Hat again but it is already out of the theatres. She liked the other movie. I thought it was funny. I could see myself with 12 kids. I was working on it before Maddy was diagnosed. Now I think it will be just the 2 but I actually felt a yearning for that caos again. All the life around me. Now you all know I am totally nuts to make a statement like that with all the caos in my life right now. But I do miss all my kids. I feel like part of me is missing when I only pull 2 kids out of the car or set plates for only 4 at the table. I get my neice and nephew when ever I can manage it so then I feel alittle more normal. I can't wait until we can start having the kids over more often and then maybe things in my world will start to feel right again. I kinda thrive in certain kinds of caos. I miss all my kids. I miss my life. I want to get out of this period of limbo and move on with our new life. Anyway, after the movie we went to Penneys and she picked out a dress for her birthday present. It is a beautiful shear and silk pink dress with butterflies on it and a white sweater with pearl buttons. I think I will have her wear it in her spring pictures. I was going to take her in for her birthday pictures now but she wanted to wait until she got the tube out. If she changes her mind she can wear her christmas dress in the birthday pictures.
When Maddy wakes up we are going to make a cake together and decorate it with Barbie decorations. All week she wanted me to make her Barbie cookies. I don't know how to make Barbie cookies so told her she would have to settle on a cake. She was fine with that so I should wake her up soon to do that. I can't believe she is 4. Partly because it has all gone by so fast and partly because I didn't know if she would make it. It will be nice having a rest tomorrow from the holiday and won't have to get up early for Donovan to get to school. Maddy has counts but we can bring her in whenever for that. Her counts were almost as good when we left Friday as they were on Monday when we got there. She is doing awesome. So keep praying-it is working. And Thank You to the 7th graders at church who made the beautiful blanket for her. Maddy really liked it.
Please pray for a little boy dear to our hearts named Joshua as he has relapsed with brain cancer in December and send your prayers of support to our fighter Kody who is struggling with the loss of his very close friend Ashliegh. She passed away right after the new year and Kody misses her dearly. Cancer claims to many lives. We need a cure.
Donovan is starving to death and I need to get Maddy up. You are in our hearts and prayers!

Friday, January 16, 2004 0:54 AM CST

I should be sleeping but I just am not tired enough yet. Maddy didn't go out until after midnight. She has had such a good week. I think one of the best so far for chemo and being in the hospital. She has been singing and dancing all week and yesterday had all the nurses up here hopping around and bocking like chickens! God if I would have had a video camera! We had 3 or 4 nurses in here at one time hopping and squaking. It goes to show you how much they care and how far they are willing to go to make her feel good and pass the time up here. She has been in a really good mood all week. I stayed up here because I forgot to set my alarm on Wednesday and never woke up to take Donovan to school. OOPS! Oh well, I forgot a lot of things on Wednesday so figured dad should stay home and then atleast I know Donovan is getting to school.Sometimes a person needs a break from being in thier own house so long to. Walking around and looking at all the things that need to be done that we can't do until Maddy is better or just haven't gotten started gets a person feeling overwhelmed. I needed a visual break.
Maddy is so excited about taking ballet classes when she is done with chemo. I got her a ballet outfit and she has whirled up and down the hall in it all afternoon. One of the nurses showed her how to do the 5 basic ballet foot placements and Maddy was just a natural. I can't wait for her to be able to start doing things again. Only 4 more chemos now. Not that I'm counting or anything. I am so anxious for and about spring. I can't wait for her chemo to be over and everything to come to life again, to be able to get out and move around, do things again, but worried about the little things I have no control over of course. I am paranoid about west nile and how deadly that would be to her since her immune system will take a year or more to recover from being supressed by the chemo. I will take all the procautions I can so it will be war in my backyard. It will be hard not having the weekly contact with the dr and her scan time is going to be terrifying to say the least. All new bone growth will look like tumor growth so everytime she grows we are going to get panicked that the ewings is back.Her best chance is after a year out for survival of a reoccurance. I try to have optimism that she will never have a reoccurrence but my mind keeps getting in the way. I do have hope and a better attitude than I had even a month ago.
All of Donovans tests so far have come back negative so I will try to get a hold of the dr again tomorrow and see what we do next. He is still having bloody stools and we need to know why. He is still tired, he tried going to sleep in school several times last week. Just not normal.
When I know more, you'll know more. And I just realized it's almost 1:30 in the am so I should go to bed tired or not. Keep praying, our love to you all. Can you believe she'll be 4 on Sunday, Happy Birthday Maddy!!!!!!!!!

Tuesday, January 13, 2004 7:02 PM CST

I will just never get used to the sight of Maddy turning white as the chemo starts. She doesn't get just pale but white, with gray around her eyes and she gets a glossy stare. She started chemo yesterday am and as soon as the chemo goes in her color washes out of her. We were on the childrens floor for the first time for a whole day. They had quit remodeling over christmas and thought the construction was on hold until Feb 19 but it was only on hold until January 13th so we were there for Monday and today were sent back up on the 7th floor. Honestly I prefer the 7th floor as it is quiet (No screaming babies!) and much more isolated so much less of germs. The rooms are also much larger on 7th and when you are in for a week that matters. It seems the walls close in on you enough so it helps to start with them a little further apart if you know what I mean! She is still talking about her birthday so I brought up cupcakes for the nurses and the cleaning girls on the 4th floor childrens unit bought her a birthday balloon. We put up her Happy Birthday Banner in her room and hung up her Sleeping Beauty poster and the Strawberry Shortcake tablecloth on her bulletin board so her room looks festive this week. She told me we need to celebrate her birthday all week not just on her birthday. She thought that sounded like much more fun. She wasn't wanting more presents just her friends and cousins to be around her again with balloons and games and to eat more cake. I promised her when her counts recover in another week or so after we get home then we will have more playdates. Today great grandma was her playmate. We went over to my grandmas house for her 3 hour break and Great Grandma helped her build a house for her pretty ponies out of scrape blocks of wood. She then colored and danced and had as much energy as she was going to have for the day. When we got back to the hospital the dr came up to see her and the dr said Maddy should probably have a nap and I said but of course and so I looked at Maddy to see if she was going to rebuke this idea and she was already asleep! She slept until 4:30 and Donny and Donovan where there so we traded kids I am at home now. Donovan has an appt tomorrow and then back up to Meritcare to see mom after surgery and switch kids with Donny. I will be there until Thursday afternoon and then we will switch again and Donny will bring her home Friday night while I get to clean. O Joy. Hopefully Donovans tests will be done tomorrow and they will call with results or an appt to come in for them. Pray it is nothing serious. I don't know how much more I could handle right now. You know that feeling you get in your head when you bend over to long and you can hear the blood whooshing in your head and your head feels full of pressure. Well I am having that feeling all the time and it is not my blood pressure. The nurses take my blood pressure every time they take Maddy's-about 4 times aday and it has never been high. The feeling is very bothersome and I don't really know who to go see about it. I am not congested and I don't feel anxious so I don't think it is that but I feel like I can't quite get my breath and I can't conentrate. I feel off and almost dizzy but not quite. I don't know-it is really hard to explain. I usually get the feeling after supper and then it is gone in the am but this week the sensation won't go away. It's always something.
Well I need to get Donovan in the tub and ready for bed. We had a great nurse last night that would sneak in and change Maddy's wet pull-up and not wake either of us up. Maddy really slept sound and the nurse didn't see the need to wake her up and put her on a cold potty when she needed her rest and had a pullup on anyway. I like her. Most of the time they wake me up to wake Maddy up to be pottied and changed so I actually got some good sleep. Maddy also slept on the bed with me with no argument. I told her we were having a slumber party on the bed and I needed somone to snuggle or I couldn't fall asleep. She has been very good and not complained at all with her cares or anything really. She is doing the chemo countdown and wants to hurry up and get to 0 as we all do. We are getting there. To slowely but surely. Love to you all. And keep praying!

Thursday, January 8, 2004 8:46 PM CST

Happy Anniversary to us! 10 years today. A whole decade. 3650 days. What a concept. Somedays it feels like an eternity and some days it seems like just yesterday. Right now it seems like a whole nother lifetime. I spent the day with Donovan at the dr and still have no answers. We have to get a bm sample and bring it in and then they will let us know about the blood test to. Donovan screamed alot but it went alot better than I thought it would. I tell you though 2 hours sitting in the waiting room with all those germy, sick kids about made me crawl out of my skin. I was constantly wiping Donovans hands and moving away from coughing,red nosed kids. I have issues. The clinic was full of walkins with the flu. I have to say I am getting quite tired of sitting in dr's waiting rooms. I can't even begin to count the hours that I have spent in those chairs in the last 6 months. I am wondering if Donovan doesn't have an ulcer from all the stress or maybe be anemic. We won't know until the middle of next week at the earliest.
I tell ya I am feeling mentally wore out. My mind is on overload. I need a mental vacation, like one were the hardest decision I have to make is what flavor drink I want and if I want another massage. I have decided to get off the e-sarc online support group totally. Not just delete my e-mails but unsign from it. There is so much sadness and so much uncertainty in all our futures I just can't stand to read it anymore. It puts to many doubts in my head. There are alot of good people on there, but thier stories are to real and the pain still to raw. There have been many relapses and the very thought sends my blood cold. I can't imagine going through this again and being reminded constantly of that being a possibility is just to much. It is hard as you get so involved with other peoples lives and almost addicted to what is happening. I am hoping this will help me regain my strength and get me centered again. I beleive Maddy is going to beat this because her spirit and zest for life is so strong but as a mother my doubts and fears always linger in the back of my mind, like a storm cloud ready to burst into rain at any moment. I feel anxious all the time. Antsy, like spring fever but more intense. I want this to be over. This next year is going to be very hard. If you make it through the first year out of treatment without relapsing you have the best chance of beating this. Her scans the next year are going to be nerve racking. New bone growth such as from a growth spurt will show up on her scans as tumor growth so I know we are going to have some scares. One day at a time I know-just can't convince my mind of that.
Maddy talks about her trip to see Sleeping Beauty everyday now. She is very focused on it as she knows that when she goes her chemo will be over and she will be in remission. I have a hard time invisioning the trip. Which is good then I have no expectations. Maddy on the other hand has vivid and elaborate dreams about eating pizza with Sleeping Beauty in her castle and the Little Mermaid will come and Barbie too. I have a hard time explaining that Barbie doesn't live at Disney World and she just keeps saying well why not? Try to explain Mattel to a 3 year old. Donovan is pumped about getting to go swim with the dolphins and thinks Free Willy will come there to. Now there is no explaining to them that Free Willy died. I don't even know if they have orcas at the discovery cove or if you have to go to the sea world theme park. I don't think the two are the same. I just don't know when we should go. If we go in June or July it is going to be in the 90's with incredible humidity and we get enough of that here, but I don't know if I can put the kids off until the fall when it is cooler down there. I wonder if there is a time limit on your trip with Make-A-Wish. I wouldn't think so. It would be cool to go down there for christmas next year but I doubt Maddy will wait that long. That and I am afraid if we wait something else will happen and we will never make it there. The eternal optimist that I am ya know.
Well enough of that for tonight. I haven't hardly spent 10 minutes with Donny all day and so I suppose since it is our Anniversary and all I should atleast sit in the same room with him. You are all in our hearts as Maddy says. Always.

And this is for Sabrina-You have been in our thoughts and prayers constantly. I hope Thomas is recovering from his surgery and not feeling to ill. I have missed your e-mails over this long holiday break. Hug and kiss the kids from us. Can't wait to hear from you again soon.

Monday, January 5, 2004 5:22 PM CST

It's the new year and so far so good. No fires, water pipe breaks, freak meteor showers falling on our house. I'm so optimistic here. Maddy beat the fever and her counts are all up and she is doing fine. Her cousins came over for the weekend and they had a blast. I figured she should get some good play time in before everyone goes back to school and gets all germy again. Mom and dad even got a break and were able to go see the Lord of the Rings movie. We stayed up all night on Saturday and watched the first two movies(not that we ever sleep anyway)and so the kids all went over to Jason and Karlas for the afternoon and we got to go to the matinee. The movie was good but alittle to violent and gory.
Donovan has been not himself and will go to the dr on Thursday. He goes to bed by 9pm, goes to sleep right away and would still be asleep at noon when we would wake him up. Getting him up for the start of school today was hard. He has also been having bloody stools and not eating so we need to check it out. I worry more about him sometimes than I do Maddy. After he was so ill this fall he has just not been himself and just seems off someway to me. I could just be paraniod because of the guilt I feel for having held Maddy in my arms day after day and didn't know she had a tumor eating up her body. I remember looking at her and thinking she looked pale or even gray at times but it only lasted a day and I put it out of my mind, thinking I was being paraniod. In fact I wasn't paraniod enough soon enough. If she wouldn't have gotten that lump pushing out she would be looking at worst case scenerio instead of remission. I'm just wondering how they are going to draw his labs when it took 3 of us to hold him down for his flu shot and he still bent the needle. And that was just a little poke in the leg, a big needle in his vein is going to a whole nother matter. I wonder how many nurses they have there during the day??? It will be a tough day I'm sure. It's always something. I'm checking for one of those stray meteors now, or maybe a blizzrad just at our house that keeps us stranded for days with no water or electricity-nah, thats already happened so that wouldn't be any fun. We haven't-no I guess we have-our electric pole was struck by lightening, but I guess that could happen again. We have had ice storms,blizzards during floods,(God I still can't think about the flood without teering up)hail, lightening, more flooding, life threatening illness, chronic debilitating illnesses, financial devistation, job loss, reality loss, have had to start over and rebuild our lives many times in the last 12 years together. But we are still here, looking down and forging on. We only look up for direction and then back down to stay focused on the task at hand. Even just taking a look around can make you disoriented. Hope I didn't lose anybody there. Sometimes I just go deep with out warning.
On the lighter side of life I am hoping I can stay focused enough this week so as not to miss Maddy's birthday party on Sunday. It would be a bummer if my family showed up for a party and I had a mental moment and totlly spaced it out. You wouldn't think Maddy would let me forget but you never now. Stranger things have happened to us! She picked out Strawberry Shortcake with purple ballons for her party theme. What ever makes her happy. You are only 4 once and we are thanking God she is getting to turn 4 at all. So she could have Chippendales dancers carring buckets of buffalo wings and strawberry margaritas -oh hey this is her party not mine-just forget that-Strawbwerry shortcake is just fine!

Tuesday, December 30, 2003 5:05 PM CST

I know, I know, It's been awhile. I have just been so exhausted that at the end of the day I just couldn't even turn on the computer much less type or read.
The kids had an awesome christmas. Many people went out of their way to make sure of that and we all appreciated everyones generosity and prayers. Our living room officially looks like a Toys' R Us bomb hit it! The kids are having a blast playing with everything and of course fighting over everything. That's ok. I'm to tired to care. I will add some pictures of christmas either today or tomorrow. Maddy got the shampoochie dog she wanted so much and Donovan got his train set and his vacuumm he wanted. What a kid-ask Santa for a vacuumm. I figured what the hey, he actually will vacuumm anything you want when ever you want so we need to go with it! Right!
Maddy came home about 2am Christmas eve morning after her blood transfusion was done. She refuses to sleep at the hospital anymore and kept telling the dr's and nurses that there are germs at the hospital and germs aren't good for her so she needs to leave the hospital as soon as she can! What a kid. So she was discharged as soon as she could leave because after all -she is right. She never recieved her second flu shot and the American Association of Pediatrics is now saying you don't need 2 shots now because there is such a shortage but I think that sucks that Donovan got his 2 but Maddy is only going to get one. We went around with them all week and still didn't get one for her. I really think the added protection-even if minimal-is better than nothing. Anyway, she was very tired on the 24th, and was very red-head to toe- she just wasn't herself at all so we didn't stay long at my moms. We had dinner and opened gifts and then went home. On Christmas day we got up and got all dressed up and spent all day opening and playing with the kids' toys. I just today got the last of the toys sorted out and picked up and the house cleaned. I tried to organize thier toys but that will only last for about a day so I don't know why I bothered. It's not like I don't have a hundred other things I could have done other than sort out Polly Pockets,Legos, Barbies and Hotwheels!!
Donny and I are still feeling pretty ragged as Maddy has been pooping at night in her sleep now. She toots and then wakes up realizing she pooped. So it has been multiple bed changes, baths and laundry all night for the last week. We have not been giving her any stool softeners or laxatives at all so the dr thinks her body is starting to work on its own again and is not coordinating the sensations with the movements. Oh joy. Most days I feel as if I have been hit by a Mack truck. Not that I personally know what that feels like or if getting hit by one brand is any better or worse than another-just a little disclaimer there for ya- but I can imagine if you were to survive you would feel every fiber of your being in pain and be so exhausted that you could not form resonable thoughts. So thats my day. Why is my life always associated with bowel movements? Not a pretty thought.
Her counts bottomed out yesterday so it is isolation time again. The creditors are relentless so we turn our ringer off the phone every now and again. So you must always leave a message or I won't know to call you. Maddy did get to spend a few days with the cousins and she was so happy. Although my brother did torture me and as he wanted to play a game called Cranium. Now honestly- do I appear to be in any shape to play a game referring to your brain? It was fun and Donny and I of course lost-no brainer there!hehe. I crack myself up! I went on errands with my sister after christmas and braved the crowds as she had things she needed. It was nice to get out and the after christmas shop has been a tradition of ours and I was glad she still wanted me to come even though I couldn't really shop. I can't believe tomorrow is New Years Eve and the next time I journal we will all be facing a new year and all that entails. I am excited and terrified. I am excited that Maddy will be done with chemo in April but there are so many major events yet awaiting us in the new year and I am scared of what will happen. It will either be a really good year or another really bad year. I am hoping for the good but preparing for the bad. I wish I had more optimism as I look into our future but I am much more cautious in my thinking, my life planning. I wish I could fast forward the next 5 years and hear those words-"You are cured", but on the other hand I am afraid to find out what is really going to happen in the next few years so I don't want to look ahead at all. All I do know for sure is that our lives will never ever be the same again. Every aspect of our lives has been changed forever by this. Good and bad. My only comfort is that I am facing this new year with Maddy still here, my family by my side and all of the wonderful friends we have made in our lives. Are you all ready for this?! Take our hands, say a prayer, and lets go! See you all in the New Year-Well as soon as I open my eyes anyway!!! We love you all. Be safe and DON'T DRINK AND DRIVE!!!!!!!!!!!!!!!!!!!!!!

Prayer for the New Yew Year-
Angel of God, my guardian dear to whom God's love commits me here, ever this day be at my side to light, to gaurd, to rule and to guide. Amen

Tuesday, December 23, 2003 10:07 PM CST

Once again it is late, I am tired and can hardly see but wanted all to know the latest on Maddy. I brought her in on Sunday for chemo and she ended up having to have surgery to have her port replaced. The back of her port somehow cracked by either it being defective or by someone pushing the needle in to far but either way she had to have surgery and have it replaced. It is in about the same spot but over to the left more as the skin above the old port was so mutililated from being poked 9 times on Sunday that it couldn't be used again or her skin would have broke down so bad she would end up with a bad infection. A surgical team had to be called in because it was the weekend and there aren't any surgeons or anesthesiologists there on Sunday. We had checked in for chemo at 11:30am and after 9 attemps to get her port accessed she went to radiology after a radiologist was called in and you could see the dye contrast leak out the back when injected into her port so the surgical team was called in and she went into surgery about 6pm. She came out around 8pm and was recovered in her room she was admitted to as it was not safe to take her to the ICU because of the flu risk. Her chemo was started around 10:30pm. She took it all in stride-I had a tougher time. It was just to much and I ended up sitting outside her room Monday am crying on the floor. I just didn't want her to have anymore pain. She has been through enough. We went in early so she would have a day of rest after chemo and have a good christmas feeling good and having to lay her on the OR table again and kiss her goodbye as she goes to sleep just killed me. She is getting tired of the whole cancer situation and isn't afraid to tell you so anymore. Not that she ever hid her feelings. She is having a blood transfusion right now and then will be discharged tonight around midnight. She will still be home for Christmas Eve just will be very sore and tired. She is refusing to sleep at the hospital lately and gets very wound up and crabby. We will take the day slow tomorrow and not rush her. We are going to my moms for supper and family gift exchange and hopefully she will feel well. Christmas day we will probably stay home and just relax. Maybe visit alittle more with my sister who is coming home with her family tomorrow but it will depend on how she feels. I don't know what her counts will do because of surgery and I don't want to wear her out anymore than she already wears herself out.
Thanks to all of you who have helped us to make this a good christmas for the kids. They will be enjoying lots of gifts and great food because of your generosity. They will not feel want this year and that makes it easier for me. With everything else going on I did not want them to feel the stress of it on christmas, I wanted them to have gifts and be excited and happy and to forget about cancer and being sick for even just a little while, and thanks to so many of you they will. I have been getting stressed out the last few weeks as the credit collectors are relentless in thier calling. 15 calls today alone from just 2 cards. I can not express enough how much the monetary gifts have meant to us. Last month I decided to just let go of my money anxieties as I can do nothing about any of them right now and figured God would see us through this as he is seeing Maddy through her cancer and I am humbled by the support we have recieved. I still am amazed at how people can care so much about us. And the love from our families, near and far, brings me to tears. I want to send personal notes of thanks to each of you but am not sure I will have my mind about me long enough to do it anytime soon so please from the bottom of my heart know that all the cards and gifts have been deeply appreciated. I cry everytime I get the mail. Even just the cards for the kids and the letters we have gotten have had a profound effect on all of us. Maddy and Donovan feel so special and loved because of all your efforts. It has helped her stay positive, has kept her spirits up and she is living proof that miracles happen with enough prayers. I was really feeling down today, negative, and Pastor Jeff called and came out to see me and I don't know what it is but when ever I am slipping back into despair he shows up and makes me feel so much better. Whenever I have talked to him I feel like I babbled on and made no sense what so ever but I feel so much better! I have a verbal dislexia of sorts and when I get tired I often say things in the wrong order or will say things backwards and feel kind of stupid alot when I talk to people. Anyway-thank you Pastor Jeff in so many ways.
And to Louise-the only good part about my day yesterday was seeing you and getting that awesome hug. Jeez I miss working with you! Next time your at Meritcare stop and see if Maddy is in. She is always in one of the last 4 rooms on the 7th floor.
Good thing I can correct most of my dyslexic mistakes before I add this to her journal. Some nights are really bad! Well I think I have babbled on enough for tonight. I can hardly see the screen anymore and my right hand is really burning. I now know I could never be a secretary!

Please have a very safe Christmas and hold everyone you are with just an extra moment this year and when you do thank God that they are there and you are getting that moment. Say an extra prayer of thanks for Maddy being with us this christmas and doing so well-set backs and all. We love you all very much. God Bless you all. Merry Christmas!

Saturday, December 20, 2003 1:20 PM CST

I know it's been awhile. I have been so tired and my fingers have been so stiff I have not been able to type. My left eye twitches uncontrollably and I can't always see to read e-mails or type. The eye thing is from lack of sleep, too much caffiene and to much stress. So honestly I don't know why I am having a problem! Already my hands are cramping from just a few lines. I think it's time to be put out to pasture.
Well since I last journalled, Maddy has been in and out for a fever and in for outpatient gama gobulin treatment. She goes in tomorrow for chemo. I'll start with last Friday-the 12th - I had gone to Fargo to get morphine for Maddy for her back pain and I had a dr appt for my own pain. I got back to Mayville in time to pick Donovan up at the birthday party he was at around 6:30, went and got some groceries, picked up gifts at the fire hall and was home around 8. Unloaded the car, put Donovan in the tub, went to give Maddy her shot and she felt hot. 97.9 in her ear. Gave her tylenol. Still hot 20 min later. 98.4 in her ear. 9pm take temp under her arm-101.4! So I called the dr and he said bring her in and so I packed and we got there about 11pm. Her temp-97.9!!! She never spiked another temp all weekend! Very frustrating. She didn't get her IV hooked up until about 2:30 am because of all the babies coming in with the flu and RSV. We didn't get to bed till after 3am and Maddy was up for the day at 7am! It was a long weekend. She definately had something starting-uti maybe-but after 2 days on IV antibiotics she was looking and feeling better so we got to go home Sunday pm. She was an absolute bear on Saturday. One of those days you don't want to claim them as your kid. Aweful. Sunday she was much, much better. She knew she didn't have a temp and did not want to be there at all. So first I told her if she didn't cooperate and act better Santa wouldn't come. Didn't work. So then I told her she could not go to her cousins birthday party or her friends Julie and Ashley's party if she did not shape up. She snapped out of it right then. You just gotta learn proper motivation here! Santa just doesn't have the clout that her cousin Alexis has! Now that the birthday parties are over I am back to square one. If there could just be a birthday every other week I would be good. Her counts came up and she is doing good. She had a platelet transfusion when she has in the hospital but not blood. She went in for the gama treatment to help boost her whole bodies immune system. Not just the white blood count. She was very crabby before it started but after she had it in her system her color became better and she wasn't as crabby. We are very fortunate that her onc. agreed to come in on his weekend off and admit Maddy for chemo so we for sure would be out for Christmas eve. It's a big deal. There are 32 admits for chemo on monday and Maddy would most definately would not have gotten hers started until the evening on Monday and would not have been discharged until Christmas day. I can't believe he is doing it. I wrote him a thank you and put a gift basket together for him as I know he has company that day. People never cease to amaze me. We got to see our Pastor Janna again and of course Maddy had her read to her. Maddy really loves to be read to and she talked about Janna and her daughters the rest of the day. She had come to visit us as we were having gama done on Friday. Maddy was supposed to have her 2nd flu shot yesterday but they couldn't find any vaccine! The nurses were going to call around but I tell you they had better find one for her. I was told they would keep her dose labeled for her so she wouldn't miss out on it. The oncology kids should be top priority in my mind this year. Donny said that 42 kids have died already from the flu. Mainly along the coast but I can't under protect her now, it will travel here.
I am glad we are going in tomorrow but I hate the laundry and the packing. Everyone has fallen asleep except for mom because mom always has to stay up and do the packing and laundry. I am so tired. My left eye is really twitching now and the cramp in my hand is burning and making my fingers numb. I should really go and swap loads and maybe rest for a few minutes before they all get up and start crabbing at each other. Talk about cabin fever here. I can't bear the thought of the rest of the winter all at home. God have mercy. I took to long, I can hear them upstairs whining already. So much for rest! My love to you all-Holly

Thursday, December 11, 2003 9:51 PM CST

Well Maddy is bottoming out today and her temp is up around 99.5. The wait and see game. Her back really hurts her but we can't stop the shots. The Tylenol 3 seemed to help for awhile last night but about 3 hrs after her dose she is in pain and we have to wait another hour before she can have more. Will have to call her dr tomorrow and see what else we can do. She did nap alittle today but has just been really crabby and not feeling well. She is really pale. She keeps picking at her lip from the side effects of the chemo-it makes your fingers and lips tingle- and she has picked it open. My poor baby. I hate chemo. I hope she rebounds soon and gets to feel good for a few days before her next round. Can you believe there is only 13 more days before christmas?! Maddy wanted me to go get her a green tree to decorate today. We had gotten a white artificial tree. If I couldn't have a real one I didn't want to pretend with a fake green one so I got white and it is very beautiful. But of course since we got white Maddy wants green. Oh well.
I was struck by something today-not literally-but with a name. Cancer mom. Someone referred to me as a cancer mom the other day and it didn't hit me until today(must be from the chemo brain!-delayed reaction there.) that I am a cancer mom. I have always been proud to be a mom, wouldn't have minded a title like super mom, or the best mom, or wonder mom-I can dream can't I- but cancer mom was never a title I had ever considered. I have read thousands of heart wrenching stories of little kids with cancer written by moms who have all survived the worst nightmare, felt for them, cried for them, prayed for them but never included myself with them. Maybe in my mind I keep thinking one day I will wake up and this will really be a nightmare and Maddy will be pudgy cheecked and blonde haired again, racing around the yard with Alexis picking dandelions by the buckets-literally- for me. Oh to dream.
Totally unrelated thought break-Maddy and Donovan asked me if I would buy them some snowballs tonight! I'm still chuckling. Gotta love kids.
Anyway back to my previous delayed thought. It got me thinking about labels and relating to them. Should I be proud to be a cancer mom and wear it as an honor that I have endured this battle with my child and won? Or should I be saddened that I have had to watch first hand the suffering of mine and so many other children. What is a cancer mom-is she any different than any other mother that would give her life for her child?, to end thier suffering for a minute at horrible consequences to themselves. Of the mothers I know they are all courageous, brave, strong, enduring, giving, loving, compassionate, loyal, devoted. I do not mean to dismiss what a mother of a sick child endures-especially to the many moms that visit Maddy's site that have or are having to battle the many monsters of disease that affects thier children, you are some of the strongest women I know- but to all the women in my life that are mothers of healthy kids-I don't know that I do anything that you wouldn't do in a heart beat if faced with what we are faced with. I think the title I like the best is momma. Chosen by my children to label me. That is what fits. I want to be just a mom.
Deep-huh?! My only intelligent thought for the week. We just put the kids to bed and for some reason I thought it was Friday today so I let them stay up real late not realizing until now that Donovan has to get up and go to school tomorrow and then has a birthday party to go to which he is now going to be tired and hyped up for-poor folks-I really don't know what to do with my absent mindedness(is that a word?). I feel lost in space all the time. And major bummer for me-I think I am developing an allergy to Purell hand sanitizer! Everytime I use it I sneeze and then I have to sanitize again and then I have to sneeze again and it is a vicious cycle. I can't live without Purell so will have to get better allergy meds. It's always something.
Well I had better get off to bed myself as I am sure I am forgetting something I will need to be up for tomorrow so should try and sleep when the kids finally are. I can't believe it's still only Thursday!

Wednesday, December 10, 2003 9:11 AM CST

Good God if we don't get some sleep soon, we are all going to just fall over. The GCSF growth factor shots we give Maddy to force her body to produce white blood cells causes intense pain in her spine as the cells build up inside the bone and cause the bone to expand and cause pressure on the other vertebrae. Every 2 hours she was up screaming last night in pain and I can only give her tylenol every 4 and because ibuprofen thins your blood she cannot take that so we were up all night. Poor Donovan could hardly function this am and just cried the whole time we tried to get him ready for school. I felt like just keeping him home but he said they were watching a movie today so he wanted to go. The dr. just called so we are going to try Tylenol 3 and Benedryl at night to try and get her to sleep. She is so crabby today. You just look at her and she starts to scream and cry. The poor baby. I already have a migraine today and Donny is asleep in the chair. There are 8 loads of laundry to do, bedding to change, floors to bleach, toilets to scrub. I need a maid. I just want to go back to bed. If Maddy wasn't crying last night we were trying to get the furnace to work. It wouldn't light last night about midnight and the house dropped down into the 60's. Finally it fired up but we were wondering if we were going to have to leave or how we were going to afford a visit from the furnace guy. It's always something.
Donovan had his first school christmas program on Monday and he looked so handsome. He stood there the first 2 songs and then he started to sing . He has been singing the songs at home for 2 weeks now so I knew he knew the words. He has very tired as we gad to go to Grand Forks at noon for an appt, didn't get home until 6:20, quick changed and was out the door as he had to be into Mayville by 6:50. Of course since we were late we had to walk from way out in the boon docks and I had forgot my coat in the rush. I swear I suffer from chemo brain or something. I have forgotten 3 different appts in the last 2 weeks and I had totally forgotten about the christmas program until we had gotten to town and Donovan reminded me when it got dark we had to go to his program. Writing things down isn't helping because I have been writing everything down on the wrong days!. So much for being organized. I keep finding those little appt cards in my car or purse and then I realize they are for that day or the day before so I get to try and play phone tag to reschedule. I just now got my very first call from the credit collectors. It is very depressing. This one was very nice but the next ones won't be I 'm sure. I did call and apply for deferments or reduced payments so I tried to work with them. I was denied so what else can I do. We went to credit counseling and dept consolidators and were all told to do the same thing. It just doesn't make it any easier to do. I need to win the lottery.
I just need my baby cured and my life back. One day at a time. She has counts tomorrow and I would expect she is bottoming out. Hopefully no blood transfusion or fever.
Well I think I am going to have to go now. My head is really pounding and it is making me nauseaus. I need to lay down. Our love to you all-Holly

Friday, December 5, 2003 1:04 PM CST

I can't beleive it's Friday already. I have been cleaning like a mad woman all morning as Maddy comes home tonight. Donny stayed with her most of the week. Donovan had a dr appt on Thursday I completely forgot about and didn't write down so I stayed home to take him to that. She has had a pretty good week with this round of chemo. She hasn't been nauseated or constipated at all and has been singing christmas carols for who ever she can trap as an audience. Pastor Janna came up yesterday and read and colored with Maddy. Maddy sure liked that and she loves Pastor Janna to so an added bonus there for her!
I have been working on my christmas cards and letters. I wish I had the time to write everyone a personal letter to rightly express my gratitude and love for all the wonderful people in our lives. It is sometimes very hard to find the right words to say it all. Last month I was very worked up about christmas this year, not being able to afford it, Maddy having chemo up until christmas, how are life has been, and I realize(only after weeks of no sleep and much anxiety!) that the only thing that matters is we are celebrating as a family this year. We are still an intact family. There was a time I wasn't sure Maddy would be here for christmas, but she is and she is doing so well now. I am letting go of what my past christmas ideals were and just concentrating on us. It doesn't even matter to me right now if she gets out on christmas eve or not, just as long as we are together. Santa can visit a hospital as well as our house. I'm not worried about the gifts either. Maddy has been working hard making gifts for her loved ones and I think that makes it all the more special. I have never been one much for homemade gifts but this year I am appreciating the beauty and meaning of it. I don't think anyone who got something made by Maddy would be disappionted regardless of what it was. I am enjoying the lights on our tree, the christmas carols playing in the background, the decorations around the house more this year than I can remember in the past. To hear Maddy and Donovan sing Santa Claus is Coming, or Jingle bells for the first time is so awesome. Their wish list keeps getting longer but mine keeps getting shorter. I wish for continued progress in Maddy's health, and for all of our families and friends to remain healthy and happy. For Donovan to grow and learn and have peace with his feelings. For Donny and I have to have moments together to reconnect and for all the other kids and families out there battling this disease or another to have peace in thier hearts and bodies. That's it. Oh and a cure for cancer would be awesome too, heck we better through in world peace while we are at it. There now, that should do it!
Seriously though - I just want everyone to know how much they mean to us, how grateful we are to them for them, and for the the prayers that get us through day by day.
We are almost to the end of our benefit fund and that isn't even bothering me. I am just so thankful we are together and Maddy is alive and kicking cancer butt that I just don't care. Just like christmas-everything will work itself out. I have faith. There are many angels out there.
I would like to ask you all to include Donny's sister Barbie in your prayers everynight. She has been battling liver cancer for about 5 years now and has just found out she has 4 new tumors. We think about her all the time and marvel at how strong she is to keep moving forward, raising her young children, accepting life and all the curve balls she has been thrown. She is a fighter like our Maddy so keep her in your prayers to.
I hope everyone has a great weekend and if you have a minute leave Maddy a message in her guestbook. She would love to have some when she gets home!

Tuesday, December 2, 2003 0:01 AM CST

It's Monday and it's been another long day. Maddy had to have a kidney dye test today and her counts had very unexpectedly dropped so she had to have a blood transfusion, and had to have 2 port accesses today. Chemo was started and she is doing alright. She is complaining alot of back pain and her throat is starting to hurt again. She is spitting alittle again. She also is now not wanting to sleep in the bed anymore so she sleeps in the recliner in the hospital room and just looking at her gives me a pain in my neck. She has been in a pretty good mood and didn't complain to much about having to stay in her room all day. She just doesn't understand about the flu risk and wants to be out and running around. Maybe tommorrow we will get to go to great grandmas for a little while. She likes to get out for just alittle while and great grandmas is a good place to go. It was a very busy day and I am pretty tired. Maddy didn't get a very long nap today with how busy it was. She is really snoring right now! She sounds like her dad! All of her eye lashes fell out on Saturday and she looks so different now without them. I have been staring at her as she sleeps and she looks so different. She is always changing now adays. She looks so much older and yet so young. Wise but innocent. Her facial expressions are something else. She can be so animated. A dear friend of mine talks about drinking in the essence of her children, the way they smell, look, sound. Memorizing the softness of thier faces. I catch myself doing that often with Maddy and Donovan. Maddy despite chemo and everything else still has that baby smell that just melts you. Makes you high almost, like the most comfortable smell ever. She will curl up on me and I just can't help but sniff her. It probably sounds wierd but I can't help it. I love to watch them discover how to do new things or when they finally figure out something, the look on thier face when thier mind makes the connection is awesome. I watch her sleep alot when we are up in the hospital. 40 channels and I watch her sleep! I never grow tired of it. I can sit and look at her all day. She is a gift. She can be a stinker but she really has a wonderful spirit. My Aunt came up here tonight and I haven't seen her for years. She is a breast cancer survivor and she said that all the kids that survive this kind of a cancer have an unbelievable spirit. Positive and energetic. I believe that. Thankfully Maddy is young enough that she had not yet learned to give up or be negative. She didn't question me more than once about her future. She asked me if she was going to die and I said no-absolutely not-End of story for her. Thats all she needed to know and she never doubted it. I wish everything in life could be that simple. I wish somedays I had that kind of faith. I am very grateful for everyday with her and try to make them the best I can. She is my gift everyday. Her and Donovan are my greatest achievements.

I don't know if it's because I haven't slept in months and am so tired and wore down or what but right now I am feeling alittle peace about everything. I am not feeling real stressed today even with all the unexpecteds. We had no idea she was going to have a kidney test today or a blood transfusion but I didn't stress, I just went with it. Not necesarily normal for me. Yesterday afternoon I just couldn't sit up anymore so I laid down on the couch and Donny put a movie in for the kids. Donovan laid down on my side and Maddy was in the recliner and the next thing I knew the movie was over and I had actually fallen asleep and napped during the day since this spring. I finally relaxed enough to take a nap. Thats progress for me. I am feeling better about things right now. That could change at anytime I know but no scary mind right now.
I feel exhausted but not so terribly stressed. I am aching but not in god awful pain right now either and that really helps alot I think. One day at a time, right.
Well I should try and rest for awhile. I am having to correct to many typing mistakes so if I am to tired to type I should go to bed right?! Right! Thank you all for your love and prayers. Have a good night!

Saturday, November 29, 2003 11:05 AM CST

I hope you all had a great Thanksgiving. We are very thankful for our family, wonderful friends and that Maddy is doing so well right now. It was a somber occasion though as everyone is very drained from all that is going on in our lives and we are just not into the holiday spirit here yet. Maddy had a blast playing with her cousins and Alexis got to sleep over so she was so happy. Donovan got to sleep over at Grandma's with his cousins-4 boys, hyped up on candy and young energy-poor grandma. But they absolutely had a blast. The adults I believe all felt the stress and tension. It has been a very long week. Donovan is struggling, Maddy's counts dropped so slow so we had an extra week of shots, the flu epedemic, money stress, cabin fever, no sleep in 4 months, it builds. She will start chemo on Monday for 5 days. I dread this week as it is just so long and when we get home she is already dropping so you spend another week in isolation. Maddy cannot be around anyone who has not had a flu shot so please everyone who might be around Maddy go and get your flu shot-it's not to late! Someone had asked me what the kids christams wish list is and asked me to post it on her website so I am but I do not expect you all to send gifts. I do not want anyone to think I am begging for things here, that would make me feel awful. We are broke, yes, we are struggling, yes, the holidays this year are hard, yes, but I do not want people to feel as if they have to do something or whatever. I appreciate everything so much that you all have done for us. From my wonderful friends on the e-sarc board, my even more wonderful co-workers, all the people we have met, Maddy's chemo Angels, our friends that have embraced us from the beginning, our church who has reached out to us over and over again. Our nieghbors, the nurses, and a few of the dr.'s. You have all touched our hearts and our lives for ever. I do not have the time for individual thank yous to everyone, I just want to let you all know how wonderful you are and how your generosity and acts of kindness are very much appreciated but I do not you to ever feel you have to do anything.

Maddy's wish list is:

Baby dolls and clothes
Shampoochie Dog in a bathtub
Sticker books-Not coloring
Pink Princess dress with pink Tierra and pink necklace
Pink shoes size 8
Glitter glue and die-cuts(scrapbooking)to make pictures with
Bathtub toys
4t and 5t clothes-She is having a spurt and is just between 3T and 4T- Tiny waist, longer arms and legs. Pull one pants-soft materials, zipper tops with long sleeves, long sleeve shirts with sweaters to go over them or jogging suits, Fleece outfits. She wants of course pink or purple. Will wear blue or yellow. Loves dresses with warm tights or leggings.
Cotton pajamas,2-piece button up, long dress like or regular 2 piece.No one piece sleepers-we have to tape her feeding tube to her top so at night we can't get her out to potty in sleepers. Cotton or cotton blend. Polyester doesn't stand up to heavy washing. Warm flannels or fleece or cotton. Things she can grow into and maybe wear next year would really help us now and later.
She wears an 8 shoe now so 8 1/2 and 9 to grow into. Tennis shoes, dress shoes, anything cute.
She also loves music and to sing and dance

Donovan's wish list:

Legos
Cars
Trucks
Train set
Planes
Boats
Tractors
Papers for his light brite
Husky dogs
Books about/with -cars, machines, construction,equipment, trains, airplanes, ect
Things you can biuld
Science kits or candy making factories-something like that
Binoculars
Clothes size 7- He has a tiny waist-have to usually buy slims, jeans, dress pants, long sleeve, sweaters, sweatshirts, t-shirts, Shoes size 11, Tennis shoes and loafers

This is just what they want and I added in what they need with no expectations. I know some of you would really like to do something so that is why I did this. I was also asked what Donny and I would like and we could use gift certificates to Walmart for cleaning supplies, SAMS club so we can buy dog and cat food, and maybe a few to Mcdonalds, Arby's, The Movie Theatre(For that mid week- no one is there- go to the movies treat)or a restuarant so when Maddy's counts are way up and it is slow we can still do something fun with them. Still-no expectations. That is all.
Your love, support and prayers are the foundation of my strength. I want you to know we feel blessed and trually believe Maddy's wellness is due to all the prayers and positive thoughts and energy that come our way. She is doing well. Her spirit is amazing, she is full of life and hope and it's all because of you and that has kept us going-it is the greatest gift we could ever recieve. Maddy's health and all your love. Happy Holidays to you all. May your families be safe and near you and may you all enjoy the true meaning of the holiday this year. Nothing is more important than your family, your children. Love them, embrace them, hold them alittle longer this year and send your prayers to all those families who are mourning the loss of a loved one. Don't take anyone or anything for granted. Give your thanks and count your blessings everynight when you go to bed and everymorning you wake up. Thank you all. We love you and God Bless You!

Tuesday, November 25, 2003 9:41 AM CST

Good morning to you all. Well Maddy's white blood count is up but her red blood count is dropping slightly still so we will have 4 more days of shots and counts again on Friday. Pray they don't want to delay her chemo for a longer count recovery. I really want her to stay on track and get these next 7 chemo's done with. She can have a blood transfusion on Monday and should still be able to start chemo so lets hope they do that. She was off of chemo for alittle over 5 weeks and I want to make sure we she stays doing as well as she is. We got a letter from Mayo stating one of the oncs spent 45 minutes with us-OK that just killed me because we spent 3 hours in the waiting room and the onc was in there for maybe 15 minutes- anyway this onc stated she spent 25 minutes counseling Donny and I on the importance of keeping her on track and showed us the protocal that says Maddy had to start chemo within so many days of surgery. She then writes in this letter" I even went so far as to immediately get up and go call Dr.K and Dr.Moir and they are in aggreance that chemo should be started as soon as possible. So arrangements where made for by me to start chemo when the family returned home as they refused to do chemo at MAyo." I was so mad I couldn't even talk. First of all she is the one that gave me the wrong date for chemo and when she realized this started back pedalling and tried to blame it on Donny and I as we were not cooperating. If I was there she would be very unhappy. She did call Maddy's dr here at Meritcare and was very rude to him. That also pissed me off because I do not need any more conflict in my life or her onc here mad at us for anything. She flat out lied and said something I had never said to him and I can't believe she is a dr and acting like a damn bully. I know kids that act better than that. If you make a mistake then you should own up to it and not put it off on someone else-especially not back on the parents of a child with cancer-Like we don't have enough stress in our lives to be dealing with such petty bulls---! I am really upset at being accused of jeopardizing my daughters health-AS IF! I have been 210% devoted to her and doing everything possible to get her through this alive and would never postpone chemo. I could scream. I don't know if I should say something to this dr about it or let it go. Give me all your opinions please.
Next subject-It is looking as if Maddy will be home for Thanksgiving and we are going to Grand Forks tomorrow to pick up her pictures from Walmart so I will start my christmas letter and get that out hopefully next week while I am at the hospital with her. I don't know what exactly I will write as I journal here and most everyone already knows Maddy has cancer. So it may be a short Letter! I got the kids cutting out pictures of toys they want and glueing them on construction paper for their Santa list. After about an hour Donovan decided it was much easier to just rip out pages of the magzines and glue them on like a book! I had to laugh. He is determined. Now Maddy just got frustrated with the scissors because they got all full of glue and wouldn't cut anymore so she handed me her half finished page and said-" you know what I want mom-you can just tell him-And make it good!" Somedays I can't hardly believe she is only 3. The glue must have dried on the scissors as she just brought me another page with a picture on it. She said I should get it for her for christmas and I told her we didn't have much money so she might not get everything she wants for christmas so she just said" That's ok mom-just tell Santa I want it-He does't need any money!" To be young and believe again. We took the kids to see the movie ELF-very cute movie- But she honestly believes Santa has elves that make all the toys and so why would he need money- he can just make her one. A dear friend of mine asked me the other day what I wanted for christmas, so before I could even open my mouth she says-No I don't have a cure for cancer, and no I don't have a million dollars to give, and no I don't have 2 million dollars to give you. She knows me to well. So I just couldn't say anything. All I want is my daughter to live and this nightmare we live to come to an end and ours lifes to get back to a more comfortable routine. Our lives will never be normal again ever. Maddy will have side-effects and I am sure more complications for the rest of her life(And yes that is me being optomistic here- looking off into the future)so nothing will ever be the same. There are things we are going to have to give up and things in our lives we are never going to be able to do that a year ago we dreamed about and that is ok. We will find new dreams and new directions. It is very hard to stop abruptly when you are just starting to feel success in an area you really worked hard in but I will not allow myself to just stop and be complacent either. I have to have something to strive for so it will just be a matter of finding a new calling I guess. Hows that for optimism?! I'm on a role today!!
My project for today is to get the pictures back on the walls that we took down forever ago when we started fixing them. That should take most of the day. I had taken down most of our curtains to be washed and I am going to try and get that done to. Doesn't it sound like so much fun? It's better than being at the hospital so I will not complain. Happy Thanksgiving to you all and thanks for writing in our guestbook. Maddy has been thrilled and so has mom! My love to you all. Keep Praying!

Saturday, November 22, 2003 10:42 PM CST

We are still in limbo with her temp. It's still hanging out around 99.9 and so we wait. God I hope she doesn't spike after counts on Monday. She wouldn't get out before the holiday. She so wants to be with her cousins so it would crush her if she missed them. She wants to see grandma and grandpa to and Auntie Chrystal. We finished decorating for christmas today so now the kids think santa should come tomorrow. They have no concept of time so telling them it's still a month away does no good. They think it should be christmas tomorrow because they want it tomorrow. To be young again and to still believe in Santa. The kids want to write thier letters to Santa tomorrow so that should be interesting. Everytime they tell me they want something I tell them to go put it on thier list to Santa. Well that worked for awhile but today Donovan goes" But MOOOOMMMMMM!!!You know I don't know how to write yet!!!!!!!!" So now tomorrow I get to do dictation for them as they try to describe to me all the many things they want. Can you tell I am so looking forward to this?! Donovan has been learning some christmas carols at school and has been singing them at home. He is actually pretty good. He has never sang a song before and he has memorized several. I think it's so cool. Maddy has most of her song from songs of love memorized. Donovan of course doesn't ever want to listen to it because it is Maddy's song. Gotta love the sibling rivalry.
Maddy has been on this kick lately about how I can't have anymore babies in my tummy. Just her and Donovan are my only babies. I think she is worried we will get back into fostercare or reinstate our license to adopt a special needs child. She doesn't want to lose her baby status in the family and I don't blame her. I do not know what we will do in the future but for now we have no plans for anymore kids. She tells me if I want to adopt someone I could adopt my niece Alexis and then she would share her room with her. I told Maddy I didn't think Auntie Karla would go for that so Maddy told me we could trade Donovan for Alexis. It was so hard not to laugh because of course Donovan hears this and is freaking out at the thought of being traded off. So I had to tell Maddy that I didn't think Auntie Karla or Uncle Jason would go for that either. Not that they don't love Donovan-I had to reassure him- but they would miss Alexis to much. I just marvel at the simplicity of a child thought process. There are so many times they just make you laugh. Sorry Karla but I gotta tell this one- When I was talking to my niece Alexis the other day she told me her mom had to get on the treadmill because she doesn't walk so well and needs to practice. My god I laughed. It is so simple in the eyes of a child. I love it.
Can you belive I actually got to take a long soak today? I was going to say bath but I didn't want to give anyone the wrong idea here!-The kids actually played nice for awhile and I got to sit and soak and I fell asleep in the tub. Must have bee an hour or so. It felt so good but now I am so very dry and itchy.
Not much else going on here. Just always and forever working on trying to get the house in order and stay on top of the cleaning-impossible when you are married let alone if you have a sick child-but that maternal instinct of cleanliness prevails and you keep fighting the losing battle anyway. I am very fortunate that Maddy likes to fold towels and wash clothes and Donovan loooooves to vaccuum. He will vaccuum anything anytime anywhere. He also likes to wash dishes although it's always after I've just mopped that he wants to so thats not always an option for him. Niether one of them wants to pick up thier dirty laundry or thier toys, they must get that from thier father! If they would all 3 just start doing that half of the battle would be won right there. A girl can dream can't she?
Speaking of dreams I should go try and have one and go to bed. Maddy didn't nap today and went to bed about 7:30 so she should be getting up a few times tonight so I had better try and sleep while I can. Keep praying for her and please sign the guestbook when you all can. I read the messages to her and there haven't been many lately and she misses them so if you have a minute please leave her a hi or what ever. I like the messages to so keep them coming. You all are my source of strength. God Bless You and I keep you all in my prayers. Happy Holidays!

Friday, November 21, 2003 11:01 AM CST

Ok I said I would journal about all that I do to protect Maddy so here goes:

On food and drink:
She drinks only bottled water
We wash all our friuts and vegetables in FIT wash
we do not use or reuse any soft plastic containers such as butter containers-they leach formeldahyde into your food and can build up in your body and become toxic. Your body cannot eliminate this chemical from your body and has been linked to cancer
We do not use plastic wrap as this too will drip chemicals into your food as soon as it is warmed
We only use real butter-margarine is not broken down in the body and can cause heart disease, stroke, ect.Maddy will already have a weakened heart from chemo so we take no chances.
We do not any longer use any cookware that is covered in Teflon or any non-stick surface. Studies have linked it to birth defects and cancer. When teflon is heated hot enough to-for example-fry bacon it will start emitting fumes that will instantly kill a bird and cause what is known as the Teflon flu. This will last 2 days and cause haeadache, body aches, nausea, fatigue and general flu like symptoms-This is proven fact-Go to Teflon.com and check it out on thier website. The fumes also get in your lungs and are linked to a certain strain of pneumonia. We can not risk that as Maddy already is at great risk for pneumonia and with her weakend immune system we can not knowingly use a product that has been proven to be harmful. Some people think we over react but if it was your child would you not do everything in your powers to make sure they survived and where healthy and safe? And once Teflon starts emitting these fumes it also starts leaching chemicals into your food.
We use stainless steel,glass, and Tupperware,

On personal care:
We use paper towels to dry our hands with and papercups in the bathroom
We soak her toothbrush in bleach/water after she has brushed, rinse it in peroxide before she uses it again and replace her toothbrush every week.
She uses Cepecol antibacterial mouthwash after she brushes and if she has thrown up
We clean the bathtub out completely before every bath.
Whenever anyone goes potty we spray the toilet and sink down with lysol spray or wipe them with a clorox wipe-This is after every person has used the bathroom everytime, all day.
I spray the floor in the bathroom with Lysol and wipe it with clorox wipes everyday.
Maddy never wears clothes for more than 8 hours. When the chemo starts working you will sweat out cancer cells through your pores and this sits on your clothes and can give you an infection. She never ever wears clothes twice in a row. Her socks and underwear are changed 3 times aday.
Her bedding is changed daily when her counts are low and every 2 days when they are up.
We put Aquaphor lotion on her hands and feet everday to help keep them from peeling.
She washes her hands constantly all day,we wipe her after she potties but she still washes her hands
We wipe her toys down and wash her snuggly blankets ever few days, everyday when her counts are down.
We also use Purrell constantly, I will wash my hands after blowing my nose, going potty, or cleaning anything and then I put purrell on just in case.
I also make sure Maddy has a bm everyday as your body absorbs bacteria through the rectal lining and can cause infection and fevers
I also put fliuds-water and cranberry juice- in her gi tube everyday to keep her from getting a UTI

On cleaning:
We sweep our floors everday and vaccuum twice a week
We bleach our kitchen floor almost everyday or use the swifter on it
We dust weekly
We do not use cleaning sponges as it is the worst germ collecting thing in a kitchen
We use a clean, bleached dishclothes to wash our dishes and we use a clean one in the am and another clean one in the pm. Germs and bacteria breed rapidly on kitchen washclothes and a person should always use a clean one atleast everyday. Do not let them sit out and reuse them again the next day. Use it one day only and then bleach them.
We wipe our table and chairs and countertops down after every meal with either bleach water or clorox wipes
We use washable furniture covers on our furniture and have all our pillows in allergen free/waterproof covers
I wash my curtains, and shower curtains, and replace the plastic shower liners monthly
We had our heating ducts and cold air return ducts completely cleaned
We have no plants or animals in our house any more
We are replacing our old carpet with laminate flooring so they can be dusted frequently
We have removed all the wallpaper in our house and sealed every wall with a mold and mildow proof sealer, We have then painted all those walls

Misc:
We keep all her meds on a calender and keep a daily log of her bms and daily temps
We do not take her out anywhere or let anyone in our house when she is bottoming out. Somedays if her temp is up and down we will keep Donovan home from school so he doesn't bring anything home with him.
When Donovan does go to school we strip him at the door when he gets home and put him in the tub and his clothes, coat, mittens ect in the wash

I am sure I am missing a few things but basically I am a paraniod clean freak. Now if you come over our house looks like it was hit by a bomb with toys and what not all over but the house itself is sanitary-Just messy at times. When her counts are way up on her "Free week" she gets now before chemo when she doesn't have counts or shots and only 2 meds I slack off but once her chemo starts we are back on it.
Now last night her temp went up to 99.9 and is still hanging out there. We can't take her in until it hits 101.5 so we kept Donovan home and are packing incase we go to the hospital today. I hope if she is going to spike she does it now so she won't have to spend Thanksgiving at the hospital. She is very crabby and tired but refuses to go lay down. It drives me crazy how she will make herself go until she just drops instead of resting when she should. Always afraid of missing out on something.
We put up our fake christmas tree last night and Maddy and Donovan enjoyed putting a few decorations on while we listened to christmas carols. I then made hot cocoa and we all watched Santa Claus 2 on video. It was a nice snuggly evening. Maddy was very tired and started getting fussy after about 7pm so they went to bed early and I enjoyed talking to my niece and sister-in-law while looking at the tree. Everyone slept last night so I am feeling better today-which with all the cleaning to do with her low counts I will need it! Speaking of which I need to get started in case she spikes. My love to you all. Keep Praying!

Wednesday, November 19, 2003 5:27 PM CST

How frustrating. I just spent the last half hour typing a new journal page when Maddy came in and bumped something and lost it all. So this one will not be as long. Supper is almost ready so I am out of time. Maddy is doing very well and since we switched her to Senokot instead of the colace/lactulose she has been doing very well -to well last night. She got up 6 times between 2am and 6:30am to poop. Not the runs just to poop and she just now pooped for the 4th time today. All normal. Like you all want to know this-I apologize if anyone is eating right now. It just amazes me that she could go so much. No senekot tonight though. Between Maddy going potty, Donovan talking in his sleep(which would wake Maddy up again)and Donny snoring I wanted to go out and sleep with the dogs! I didn't go to bed until 1:30 so I didn't sleep at all last night. I started writing my book yesterday and it is going to be a project. I feel the need to write about all that we have been through and all that we are going through. I don't know if it will ever be published or that I will ever finish it but I have always wanted to write a book so we will see. I had taken courses to write childrens books and I have thought about writing a book about cancer for kids but I am not sure how and what exactly I would want to write about. There are so many different aspects to this disease and so many ways it affects a person and families life that I just don't know where to begin. I have plenty of time to sort that all out.
Donovan went on a field trip with the school to go see the play sleeping beauty. Now there was a little confusion on to which sleeping beauty it was and Donovan was teasing her it was the real sleeping beauty at Walt Disney World. Needless to say Maddy freaked out at the thought of Donovan getting to meet sleeping beauty before she did. We finally got that cleared up and he went and had a great time. His teacher said he sat mesmerized the entire time-didn't move(Not usual for Donovan!)So way to go Donovan. Maddy was still jealous so I took her to Alco to look around-She loves Alco- and she got to pick out a $1 toy. They really do have some of the best $1 toys. A little plug for Alco there. We also went to Pizza hut after Donovan got home and used one of Maddy's free breadstick coupons from her benefit. She loves pizza hut bread sticks and actually will eat them so thats a bonus for me. I can feel in my bones the weather is changing. My muscles are getting tight so it's going to get cold. I feel like and old grandma talking about her achy elbow or arthritic knee that can forcast the weather. Somedays I truelly do feel like a grandma.
Well we are holding out hope that we will make it through this without a fever and that we will be able to go to my folks for Thanksgiving. My sister is coming up with the boys and It is always nice to get to have all the kids together. So far Maddy's hands are not peeling or turning colors at all. She is energetic and feeling pretty good. She will have counts in the am so will find out then if she needs a transfusion. We might get lucky this time since she has had such a long break maybe her body will respond better. We can hope anyway. So far so good. We are over the half way point. Her next chemo will be December 1st and then the 22nd. Which hopefully she will be out in time for christmas eve dinner at my folks and then home for christmas. She should still be feeling well enough to enjoy everyone and everything. Thier Santa lists are getting longer by the day. We still haven't quite figured out what we are going to do there. We just have faith that god will provide or atleast one of his angels. We have made it this far, so I am sure we will make through somehow. There is power in prayer and miracles are happening in our daughter. The rest is all unimportant really. I have started reading a book I had gotten a few years ago from Oprahs book club called simple abundance and there are some good quotes in there. It talks about not letting money control your life to where you aren't experiencing life anymore but merely being tormented by it. (God do I know how that feels) Money will ebb and flow in and out of a persons life you just need to be able to enjoy life regardless. So I am working on the letting go and enjoying. It is damn hard but I am trying. So enough about that.I don't want to get down again.
I hope we have a mild winter again and that the temps stay up above the donut. (To much Tom Szymanski!) Maddy and Donovan are "writing" out their christmas cards while I retype this and I am getting quite the stack on my desk. So if anyone would like a card thats been scribbled on just let me know! Well Donny is up and moving around so I should go and check on supper. I guess this turned out to be a little longer than I thought. Some have asked what we do that is contributing to Maddy's success. I really believe it is all about a persons body chemistry and metabolism. But I will write about all that we do for her in my next journal. Good night for now! Keep praying for our Maddy.

Saturday, November 15, 2003 1:12 PM CST

Maddy, Maddy, Maddy. What a kid. She got home yesterday afternoon and has been doing really well. Wanting to eat all the time. She only takes a few bites but she grazes all day on lots of different foods so it is good progress. She is getting pale so I wonder if she won't need a blood transfusion on Monday. She has been active and fighting with Donovan as usual. She is craving cheddar broccoli rice all the time. She could crave worse things, I just find it unusual that she likes the broccoli rice. Not complaining though! She got a song written for her from Songs of Love in the mail yesterday and it is pretty cool. It has her's and Donovans names in it and her cousin Alexis too! She danced around the living room to it yesterday. If you haven't heard of them before go to www.songsoflove.com. It is singers who write a song just for your child according to thier likes and personality. There are some pretty cool organizations out there trying to make kids lives a little brighter while they battle for thier lives.
Speaking of battles-I took Donovan up to the Nursing home yesterday so him and I could get our flu shots and it took 3 of us to hold him down! God that kid is strong and loud! I don't think I have ever heard him scream so loud before. He must have scared the residents half to death. Alot of lights came on after he was done. Thank God Margie was there to help. He sure snuggled up to her and not mom afterwards. Poor Jeanne having to try and catch his leg long enough to give the shot. The worst part is he has to go back in 1 month for the second dose. Maddy had hers on the 10th. I got my first flu shot with Donovan. I thought it would hurt like a tetanus but it doesn't at all. Donny will go in next week so hopefully we will all stay healthy this winter. Staying home most of the time will help, but the weeks spent up at the hospital don't. It has been nice to have warmer weather this last week. It is helping with the pain. When it gets so bitterly cold I just hurt to my bones. I am hoping Maddy is feeling well enough for us to get together with our family for Thanksgiving. I am trying to get a few christmas decorations up this weekend. I managed to get the autumn stuff down but not put away yet. Donny has been sleeping. Tomorrow we are going to try and finish the floor upstairs so we will be done up there and can move down to the den and getting the walls and floor fixed down there. So I told him to rest today so we can work tomorrow. I get frustrated being home day after day with so much to do and either not feeling well enough to do anything or Maddy having her counts down so we can't do anything. I'm just getting ansty to get it done and move on. I feel like I have cabin fever already and winters just starting. Being at the home yesterday made me want to go back to work so bad. If I do I would lose my medicaid for the family so I can't until Maddy is done with the majority of her medical stuff. Chemo will be done in April and she will have to go see her surgeon at Mayo then and then scans and test 3 months out and every 3 months after that for a year or 2 and then they start spacing them out more as long as she stays in remission. I am hoping to be back to work in the fall and Donny hopes to get to go to school then to. We lose our health insurance in June so we will only have Medicaid coverage until I have worked full-time at the home for a year and then I can apply for health insurance. I do not know what we will do if Medicaid drops us in that year and a half. I will try not worry about it until then_yeah right! Well I should probably get moving and put away my decorations and of course clean, clean, clean! Keep praying!

Wednesday, November 12, 2003 10:43 PM CST

Well we are back up at Meritcare. Maddy started chemo today. Evidentally she should have started chemo 10 days after her surgery but Mayo neglected to tell us that. I asked everyday when she should start chemo and I kept getting told right on schedule which would have been the 17th and she was scheduled to start on Monday. I am so frustrated with Mayo right now I don' care if we never go back down there. I cannot get into all the details of the numerous discrepancies , errors, miscommunications as I do eventually need to sleep and can't afford to get that revved up. Lets just say Maddy to had to be supervised 24-7 down there or serious errors in her care would have occured. They would not take our word on anything for her and she suffered for it. I am glad to be back here and have told everyone so. Mayo certainly has an arrogance about them and a few of Maddy's dr's and nurses made us feel inferior and her care at Meritcare second rate. Atleast here the dr's and nurses listen to us and trust us and don't tell us that we don't know whats best for her. Chemo and cancer wise I don't know, day to day and body wise I know her inside and out. And here people care about her. There were nurses that took care of her the first time we were there that told me they remebered us but didn't say hi to Maddy. The nurses at Mayo aren't any better than our nurses here at Meritcare. We have had our moments here but I would not chose Mayo over Meritcare.
I am glad we are moving forward and Maddy will be half way through treatment after this chemo but I am sad to be seeing her in pain from the chemo again. I hate to watch her personality change and hear her cries of pain. It was so nice these last few weeks she has felt good and been off of chemo. I listen to some of the parents talk about how their kids had no side-effects from chemo at all or maybe threw up once and that was all. It makes me want to cry. She gets so much pain in her legs and joints and throws up, gets yeast in her mouth, gets fevers, constipated, weak, needs to have blood transfusions all the time. It makes you feel worse to watch them suffer so. I have been pretty down lately and part is just the pain I am in from my fibromyalgia. I don't sleep, don't get to move around like I used to, don't eat right and have been highly stressed for oh 4 months now. My body can't take it, add being broke and the holidays looming near , well there you go. I am glad my journaling honesty helps others not feel alone. I don't feel alone as I read and reread the messages in Maddy's guestbook of all the others struggling also and I am very grateful to all who reach out to me and let me know they are feeling this way to. We will make it through this. I wish I knew how this was all going to end. I wont know till I get there and at times that drives me nuts. It is part of my serenity I work on. God grant me the serenity to accept the things I cannot change. Somedays I feel like I need serenity by the truckloads. My mood is improving now that we are home and we do not have to go to Mayo except to have Maddy watched by her surgeon so the gortex in her side doesn't tear or break the ribs it is attached to. It is somewhat flexible but I guess it will not grow enough with her and will need to be replaced. If not watched closely it can actually curve her spine or break her ribs if it gets to tight. Her surgeon is awesome and did a fine job reconstructing her side so other than the scar you cannot tell she doesn't have any ribs there. I am probably repeating myself as I don't remember what I journalled before. So if you have all read this before I apologize. The nurse just came in and told me to go to bed so I guess I'd better. My prayers and love to all.Good night!

Friday, November 7, 2003 10:49 PM CST

I don't know if it is because I am so tired or because I am so achy and stiff or if it is the fact that I just don't trust happiness anymore, but I just can't be reassured right now about Maddy's future. I am so afraid I will let my gaurd down, miss something. There have been so many lately that are losing thier battle with ewings or another cancer, or have already lost it. There is so much unknown. It sounds dumb but it was almost easier to have hope when there was none. The scary thoughts keep creeping into my mind. The what ifs. It's like being tortured. I can't stop them. We are both so burnt out. We have had no alone time since July. The only time we have been alone is when she has been in surgery. I feel guilty but also feel so burnt out from the constant 24-7 clinging, crying, wanting 210% of our attention. I feel like such a bad mom for wanting to be alone, feel silence, let my self think and sort through, process if you will everything we are going through. Maddy teases Donovan relentlessly and tries to get him in trouble. It doesn't take much to get Donovan crying and upset so our afternoons are like world war 3. I know it is typical and to be expected, but there are no patients left right now to deal with even the typical. We don't ever get to sleep all night. The deprevation parents of sick kids go through is mind boggling. We all look like zombies up at the hospital. Pale faces, red, swollen eyes, the ever present cup of coffee or bottle of pop. I am suprised there are not trenches wore through the floors from all the pacing. Donny finished painting up stairs today so we went for a drive to Grand Forks to get out of the fumes and the pain from sitting in the car is unreal. I don't know how I am going to make it to Rochester on Sunday. You sit so much and then you get home and you don't sit, but you don't rest. It is a vicious cycle. The road left ahead of us seems so long yet. I want it over. I want a fast forward 5 years and to be declared cured. I know I want so much. A cure for cancer, end world hunger and suffering, wipe out poverty. Not to much to ask for is it? I just want a guarantee. I know it's not possible, but it's what I want. I just want to know 100% for sure she is going to beat this and never have to go through this again. Ever.
To much information this week about other sick kids. It's amazing how much they can scare you because it only takes a smile to fall in love with them, or just to know of them is enough. I have a hard time getting that little Ashley out of my head and because of Hippa laws I can not get info about her and since I am brain dead I cannot remember her parents names I can't get her room. I am debating about goin up to her room on Monday when we are there. I don't know if I could really handle the news about her fate. She has had 28 surgeries in her 4 short years of life. She is regressing and the pain in her parents is so evident. There is a boy still up at Mayo that has been there since before Maddy was diagnosed in July. It is very sad. I have a bleeding heart. I feel like I need a blood transfusion. All the pain and suffering. It is getting cold out and some don't have enough heat, animals freeze to death, people are alone with no one to love them, kids battle for thier lives during the holidays instead of spending time at home with their loved ones enjoying life and being kids. I think to much. I feel to much. I am to tired to stay focused. I usually give so much this time of year and this year I cannot and it kills me. Next year I probably won't be able to either. I feel worthless this year- I can't give anyone my money or time as I have none of either to give. I cannot make plans or comittments right now. Things rarely work in our favor around Maddy's chemo. So many people have been so kind and generous to us and I feel like I have nothing to give them in return. Maddy got a package of hand made cards from the sunday school kids at Salem church today. She was so thrilled. We spent an hour reading and rereading the cards, looking at the kids pictures as they made the cards. It was so awesome. And the 3 graders had a pupmkin contest and donated the proceeds to Maddy, it was their choice and they chose to help her. It made me cry. So many people have been so unexpectedly generous and kind to us. I will never have the right words to express how deeply it has touched us. I wish I could do more. I do not mean to sound as if I'm having a pity party. Maybe I am but I have just felt low this week. I feel so bad for all the kids that are suffering, I am so tired. Maddy has been very whiny and clingy and she has a right to be. I need a distraction for my mind, to keep away the negative thoughts. Actually I need a months worth of sleep and a condo in Arizona for the winter. I will quit complaining now and go to bed. Thank you all for "listening" to me tonite. I needed to vent. Thank you for all your love and support. God grant me serenity, Amen.

Thursday, November 6, 2003 5:18 PM CST

Hello everyone. What a week. I can't get over how tired I am. Donny also. The kids never. Maddy has had an increase in pain the last few days. I think she is falling asleep on that side and makes it really sore. Otherwise she has been doing well. Crabby and whiney but good. Today I got thier toys sorted out from the ones they have outgrown or broke or just never play with. What a haul. # small garbage bags full. I guess its been awhile since I've done that. Cleaned out a closet too. Didn't get any painting done but the nights not over yet. I know my friend Margie isn't working tonight so maybe I should ask her if she wants to come over for a beer?! (I don't drink so she knows what I mean when I tell her to pick up a six pack!) Bring tools. I feel the need to wreck something. Well today I don't feel like doing it but it really needs to get done so I will try to force myself to get going. Donny doesn' help as he is tired and aching also. My chronic fatigue and fibromialgia have been awful this year. Both are aggrevated by stress and since I don't have any of that atall in my life-yeah right! We are not looking forward to the long drive to Mayo especially on the deer hunting season opener. We are going to have to stay down there Monday night and drive home Tuesday during the deer so we don't have an accident. Donny has hit 4 deer since 1997 and we can't afford to total another car so we need to be careful. That and niether one of us sees very well at night so in the winter we try not to do to much night driving. We are going to try and have our family portraits done on Saturday for christmas. Walmarts holiday package is only $3.95 and the pictures turn out pretty nice. Donovan will be at Jason and Karlas while we are gone so he will love the extra time with his cousins. He had a pretty rough day his first day back to class after his long leave. He didn't want to be away from us. We had kept him home for 2 extra days just so we could all be together. I keep hearing of kids have reoccurances and having thier cancers spread while on treatment. It scares me. Even though Maddy is doing so well it really just gets to me. I met a family up at Mayo who,s 4 year old daughter might have a disease called Lays disease (unsure of spelling) where all her organs are just shutting down and there is nothing that can be done to stop it. It broke my heart. How helpless a person can feel as a parent of a sick child. Her name is Ashley and she is having some pretty scary tests this week so pray for her. You feel guilty when your child is doing well and someone elses isn't. It's called survivors guilt I believe and it is awful. When your child is really ill you are all consumed with them you don't notice anyone or anything else, and then when they start to feel better and you relax a very little and start hearing the other stories of the other families it makes you feel guilty that your child has a chance at living and someone else doesn't. It sounded stupid the first time I ever heard it , like I would ever feel guilty if Maddy got better. But you do in a way. It is strange. You feel helpless and scared all over again. Like if they are having such a hard time then maybe things aren't going to go so well for you. Mom paranioa I know. But the scary thoughts creep in like it or not. Any way on an even more depressing note- the holidays are almost here and I am so not prepared. I usually have a;; my gifts wrapped by now and this year I don't even have them wrapped. We got home from Mayo and a friend of mine asked me what we were doing for Thanksgiving and even though I had told my sister as we parted from Mayo -see you at Thanksgiving it never dawned on me it was in just a few weeks and christmas comes so fast afterwards. To much to think about. The kids have been so obsessed with Haloween I totally forgot about the rest of the holidays coming up. The holidays, birthdays, New Years, Our 10th wedding anniversary, Maddy's birthday all before January 18th. So much and chemo and low counts coming up. Being sick and stuck at home. Maddy wants to go out and play in the snow but I don't want her to hurt her side or get a chill and a fever. It is going to be a long winter. Well Donny wants to eat so I must go before world war 3 starts. Keep praying for wonder woman-the battle isn't over yet!

Monday, November 3, 2003 3:46 PM CST

Can you believe we are home!!!!!!!!!!!!! It feels so good. We came home on Sunday and Maddy is doing awesome. She has had 3 doses of regular Tylenol since Saturday am and thats it. She is up and running around. Eating and playing with Donovan. They have been inseperable all day. Thank god-mom gets a break from the clingy kid syndrome for a day. We are all so tired. Well Donny and I are-the kids are doing just fine. I feel like I could sleep for a week. Maddy totally amazed all her dr's and is absolutely wonder woman. I can not even find the words to describe her. Not many people, young or old, recover this quickly from this kind of surgery. Other than her skin peeling from the tape from her chest tube dreeing she has had no problems from her surgery and is feeling good. She will say once in a while her surgery hurts but won't take anything. It helps to keep her alittle slowed down so it's not a bad thing. Just got the call that she goes back on the 10th for her post-op appt. with the surgery and she will have an ech-cardiogram and blood work done also. It will be another long day. 12 hours total we will be there between all our appts. Maddy will atleast get to feed her geese one more time before winter. I'm not sure she will have to go back again to Mayo until the spring when her chemo is almost over. I hope anyway. The preliminary decision is there will be no radiation and I hope that stands true when we go back down. I don't know what they would radiate if all her margins are clear but you just never know about the dr's. I tell you what, I am glad we chose to stay here for Maddy's chemo. It all drove me about nuts up there with all the miscommunications and the unfamiliarity of the staff and dr's. There were just so many differant people we dealt with in a day it was dizzying trying to keep everyone straight. The nurses weren't the same with Maddy as ours are in Fargo and wouldn't do the small things that make the pokes and vitals all go better for her. I could just be from all the stress that I felt so frustrated, but I did miss Meritcare-Can you believe I said that! I do believe that her surgeon Dr. Moir probably saved her life though and that is all that matters. He did a beautiful job on her surgery, took extra precautions and Maddy just loved him. What more could you ask for-well maybe that he told me my daughter is going to GROW UP!!!!!!!!!!!!!!!! Music to my ears. Although a friend of mine reminded me this means going through puberty!! hehe. We all take the good with the bad don't we! After all this puberty won't be nothing, although I pity the young man that ever comes calling for her. He will have to face an army of family and friends that will all be overprotecting her. Not just anyone can have our wonder woman ya know. He will have to come with credentials, references, a college degree, six figure income, letter from his pastor, resume of volunteer work, hey, I'm going to have to write this all down so I remember. I should have thought about all this before I got married-hehe. I wouldn't change anything, otherwise I wouldn't have my little wonder woman. Life sucks but we keep going on, we might stop and complain on the way -but we always move forward. We are not quiters and have never given up the ship. We will eventually have to give up on our finances but will keep on until we absolutely can't anymore. Donny and I have never shirked our responsibilities and that includes our bills. Even during the flood everything always was paid. We went without alot so we could keep our good credit and pay what was ours to pay. That's just how we are. We don't jump ship at the first big wave. We weather the storm. It takes it's toll and we are no spring chickens but we are survivors. Gee how many more uphamisms(unsure of spelling)can I use here. Well it is supper time, I have 2 more out of a few dozen phone calls to make and my children have just realized that they have been detached from me all day, and I just got a paper cut on my cheek from licking all the envolopes to the 20 odd bills I came home to-Calgon-Take ME Away!!!!!!!!Flash from the past there. Will update again soon. Thank you all again for all your love and support, I don't know if we could have gotten through without you all. Love and hugs to everyone out there. I will call everyone when I can so don't get upset if it's not all tonite. I am wiped out and can only do so much in a day!

Thursday, October 30, 2003 10:05 PM CST

Wonder Woman is doing great! She is out of ICU and in room 3-123 on the peds floor. Her 2 extra IV's are out,the cathetor is out and we are down to her chest tube which will come out in the am. She was up out of bed 3 times today, has ate a tiny amount and is on very little pain meds this evening. She has been playing, smiling, and watching cartoons. She has hardly cried at all through this whole ordeal. She can't wait to be in the Halloween parade and get to wear her Wonder Woman costume. She has amazed everyone. Her surgeon said the pathology reports reconfirmed clear margins and the tumor was 70% dead!!!!! Maddy had to hug and kiss Dr.Moir twice before he could leave and he said 48 hours post op and she is giving hugs and kisses-he put 2 thumbs up and was beaming. She is amazing. I can't get over how awesome she has been. She whines and cries more with a blood draw than she has through all of this surgery. When I left all she had had was 1 small dose of morphine and regular tylenol for over 8 hours and had no pain. She has been up to potty and had a bed bath, got dressed. She says her throat is sore from the respirator and that her shoulder hurts from having it pulled up during surgery but otherwise has been so good tonight. I think mom and dad hurt more right now than she does. The aching and stiffness from the damp cold and hard chairs can about drive a person crazy. Not to mention the stress and the relief of have left us both barely able to stay awake. We are so weak and drained its unreal. I can't remember the last time I was this exhausted, well maybe it was last week! Maddy's incision site looks really good and she has no swelling or fever. She totally amazes me every second of every day. I can't believe she is my child, so beautiful and strong. Charming and happy go lucky. All the nurses and her surgeon of course just love her.What a kid. Just look at what the power of prayer can do. Make miracles like Maddy! Everyone should be rejoicing now, having faith. I am. I am of course a true mom with my doubts and fears but for once they are not taking over my mind and spirit. I have true hope, I have my Maddy and she is alive with love and spirit. Thank you God, for watching over her and giving her strength. Giving all of us strength, and serenity, and courage. My love to you all!

For Minda-I did try to call you after Maddy's appt. Monday but your phone just rang on with no answering service-I'm sorry we did not get to meet.

Tuesday, October 28, 2003 10:02 PM CST

Wonder Woman Saves The World!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Clear margins! No more tumor! She is going to live!!!!!!!!!Her surgeon was emotional when he came out and told us. He had to remove a large part of her diaghram and some of her lung but the tumor was only attached by strands and he did not have to severe her nerve to her diaghram. The tumor was not attached to her heart. The 3 ribs were removed and a mesh was put in its place. AND MOST OF THE TUMOR WAS DEAD!!!!!!!!!!!!!!!! The best news for ewings. The chemo is not only shrinking the cancer but killing it !!!!!!!!!!! CLEAR MARGINS-NO RADIATION! She did not get into surgery until about 2pm and was out around 6pm. She is being sedated in the ICU all night as when she woke up she was in so much pain she quit breathing so she is on a respirator tonight but this is not uncommon. We were sent back to the hotel to get a good nights sleep as tommorrow she will probably be off the respirator and it will be a rough few days. The surgeon thinks though she might be ready to go home this weekend but we won't push it. Her chemo will continue on schedule and she will have 8 more to make sure we get every last cell. But the surgeon said she is going to grow up! Our first words of hope. He said he feels right now she is cancer free!!!!!!!!!!!!!!!!! I feel like he has saved her life. He used every precaution, took large margins and used a technique to explode any cancer cells that might have been left in her chest cavity. He wouldn't let anyone tell us anything about how perfect everything went so he could tell us himself and it showed how much he cared for her. He said she really is wonder woman. A miracle child. A true gift. All day today she laughed and sang and played peek-a-boo with the nurses. She has fans up at the hospital that chased us down just to see her. She is really amazing. Her spirit is unbreakable. All our prayers are being answered. God loves her and a miracle is happening. I feel so numb from the relief. My hands are shaking and I feel weak. The surgeon said it went so perfect, he said she was so strong and did so well, she didn't bleed or drop her vitals. I am so happy. Thank you all for the prayers. I really believe all the love and support and prayers is what is saving her. We love you all and our wonder woman is going to save the world! God bless you all. Say prayers of thanks tonight and for her pain to be not so great tomorrow so she can get off of the respirator. She will be in the ICU for atleast 2 days now but they expect she will do beautifully. I need to go to bed now but will update as I can. We love you all. Thank you!!!!!!!!!!!!!!!!!!!!Clear Margins!!!!!

Monday, October 27, 2003 6:53 PM CST

GOOD NEWS FINALLY!!!!!!!!!We met the surgeon today and he said that Maddy has the best surgery outlook for ewings he has seen. He is confident tommorrow afternoon Maddy will be cancer free!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am so happy. The tumor is down to the size of an egg and is in an area he can take a lot of tissue from. There is a slight possibility it is attached to the lung and a nerve on the heart lining but he can take the linings with no real effects. Worst case senario is he would have to severe the nerve that controls the diaphram but he would leave it out so she would have lung room, she just would never be in the olympics. I can live with that. It was emotional to finally have a dr give us hope. He is confident of clear margins tommorrow. She will have surgery at about 10am and will be in ICU for 24 hrs as she will have a tube in her chest to drain fluids. He seems to think she will be ready to go home next Monday as long as she doesn't get an infection. We found her a Wonder woman costume today that she wore to her appt. and everyone just loved her running up and down the halls saying I am wonder woman and I am going to save the world! Way to cute. The drs were so impressed with how she is doing. She grew a 1/4 of an inch and gained 2 1/2 lbs! And she has grown some hair. I am feeling so much better now. The surgeon put me at ease about the surgery and was so confident, thats what I really needed. Maddy hugged and kissed him and I hugged him to-much to his suprise! She is doing awesome. I am so proud of her. I can't wait to be home with Donovan and all our family and friends and finish up this chemo so she can go save the world! Our direct phone number is 1-507-322-9116. We will mainly be up at the hospital but will come back to check messages and make calls. Thank you for all the prayers,love and support. Be praying hard tommorrow that there are no suprises, clear margins and a safe surgery. We check in at 9am and surgery is around 10am and will last 2-4 hours. I will update when she gets out. We love you all-and our little wonder woman is going to save the world!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, October 26, 2003 2:46 PM CST

God this kid can go-go-go. We took her to the Mall of America in the Twin Cities yesterday. She napped the way there and then was non-stop until about 10:30. We walked around every floor atleast once. Well Donny and I walked and she ran. We took her to the underwater world and she thought that was way cool. She got to pet a shark and a baby sting ray. The sharks felt like sandpaper but the sting rays were unbelievably soft. And they liked to be petted. They would swim right over to you to be stroked on thier back. Maddy thought it was so cool. They just happened to be having a halloween party at camp Snoopy so we got Maddy a fairy costume(All the stores were sold out of Wonder Woman!) and she got to go trick or treating around camp Snoopy and go on some rides. The wait to get on the rides averaged 30 minutes so she didn't get to go on to many. The Halloween thing started at 5pm and we left about 9:30. She was her usual self and would go up and introduce herself to people, sing for them, and dance of course. There was a band walking around playing halloween music and Maddy would go and grab people and pull them out by the band and dance with them! She is quite the kid. She had a blast. It was good day. We didn't get back to the room until after 12 and then found out it was daylight savings so we set the clocks back and like Dummys stayed up for another hour! Maddy was up by 7am as usual and Donny was feeling pretty sick today. The cough medicine the dr told him to take isn't helping his sinus'-go figure-and he feels miserable. There was a prayer celebration for a little 3 year old that just finished her chemo for ewings up by Lakeville that we were invited to but Donny just didn't feel up to it and I don't like to drive around the cities so we stayed here. I've been trying to catch up on laundry and phone calls. Maddy wants to go feed the geese. She just fell asleep so maybe after she wakes up. It is really disgusting that the city puts out food you can buy to feed the geese but do not take care of them at all. The first day we went to the park there was 3 geese with broken legs, 1 with a broken neck, 2 with dislocated jaws and 2 with broken wings. Maddy cried and wanted somebody to fix them. I called the city and no one will provide care for them, not the game warden,animal control, or the humane society. I even called some vets and they all said to call the game warden, that they don't do goose rescue. Now try explaining to Maddy why we can fix her and not the geese, why its ok to let them suffer but she gets to go to the dr and get fixed. I tell you this kid comes up with some pretty tough questions. And the thing that makes me mad is the feeders are right up by the parking lot and they are getting hit by cars and no one will even end their suffering. All I got was let nature take it's course. Well we don't let nature take it's course with humans and we shouldn't with animals either. Especially if it's a man made problem. I don't recall cars as part of nature. My sister told me to write a letter to the newspaper and call the city office and complain and I think I will. The one thing that makes coming here OK for Maddy is feeding the geese and when you come and they are all beat up and sick it makes her sad and then she thinks she won't be alright because the geese are all sick. Little kids relate to life that way. I just might have to find a way to bring some geese home. We used to have geese at our other farm. I don't know, but my wheels are turning.Donny feels the same way. It's disgusting that nobody has done anything for them. We have been there so much they eat out of Maddy and Donny's hands. I put my feed on the ground cuz you never know how hungry they are! I'm a chicken I know, but I like all my fingers. Maddy and I had quite the talk the other night about her surgery. She understands what is going to happen and is OK with it as long as they only take 3 bones, thats all they get she says. I need the rest, OK mommma?, Only 3. And then I will be all better she says. And the way she acts I believe she will breeze through this like everything else. She will be up and dancing in no time. Just keep praying for clear margins, no new tumors, no more cancer anywhere! I will update again tomorrow after we meet with the dr's and have a scheduled time for surgery. Keep praying for her!

Friday, October 24, 2003 3:49 PM CDT

Well the tests are over now, finally. We are all so tired. Haven't gotten to the geese yet either! Maddy keeps reminding me. All her tests went really well and she didn't even need anesthesia for anything, not even the MRI. She was awesome. And luckily mom was thinking the first morning and had them check on her bloodwork orders as Maddy needed a blood panal done to check her platelet count and they found out a bunch of lab work was ordered that had to be done before the first test and not after like it was scheduled. Yeh mom. Could have been a real headache. She has been really good. She was still for all of her tests and only needed a mild sedative for her MRI and not anesthesia. She was so tired and went into such a deep sleep she wet her pants and was not very happy about that. Donny went in this am to urgent care. I think he has a sinus infection but the dr told him to take cough syrup and go to bed. He really isn't coughing so much as he is congested and in pain. Will be a long few weeks for him. I was feeling ill before we left but now my mom overdrive has kicked in and will bealright until we get home and then will probably get sick again. No test results until Monday but one of the Rns that looks and sounds like my uncle Fred said they didn't see much on any of the scans so that was encouraging. Maddy has been flirting with everyone, and I mean everyone. All the nurses,drs,techs,patients, and has she had energy. She runs up and down the hospital corridors and sings and dances and tells everyone that after she gets done being a mermaid she is going to be Wonder Woman and then she is going to get married so her auntie Pam will buy her new shoes and her mom will buy her a new dress, and everyone laughs as she takes of down the hall. She is such a kid. An awesome kid. She was singing in the elevators today"I love my family, so much, and my family loves me!" Well there weren't alot of dry eyes when we got to our floor. She misses her brother and so do I. I hate being away from him when he is having such a hard time to. I am going to call him tonight. We all need to take to him. I don't know what we will do tomorrow. The weekend will suck waiting for Monday and all the test results. They won't schedule her surgery until Monday and it is hard not knowing when that will be. She is so not worried about it and mom is a wreck. Clear margins, clear margins, clear margins, everyone now clear margins. Maddy just woke up and now Donny to so I had better go help her go potty. She is crying. She has been sleeping for about 3 hours so will be up most of the night. Wednesday night she didn't go to sleep until after midnight and was up at 6am. Maybe we will go to the movies tonite. We have seen finding nemo before but it is at the $1 Theatre and with everything this hotel does have it doesn't have a vcr! So all the movies we brought are worthless right now. She will watch a little of the Disney channel but of course wants to watch her movies and nothing else. She does get a kick out of channel surfing though. Much more fun with more than our 4 channels at home! I will keep you all as upto date as I can. Although I get to tired to even think or type so my not be daily. Thank you all for your prayers love and support.

Monday, October 20, 2003 9:35 PM CDT

It's my therapy time again. I e-mailed my Tupperware manager and told her what was going on and that I couldn't do Tupperware now, for awhile. It was really hard. I am a total Tupperware addict and it was the one thing I did for me. I haven't been very active at all this last year with everything that has happened but it was still there for me. I could pick up the catalog and flyers and get what I needed for family and friends. I have given away more Tupperware than I have sold I think. But I loved it. The regional director called me today from the Tupperware office in Fargo were our headquarters are to express her support and that really meant alot. She was going to ask for prayers tonight at the weekly rally for Maddy. I am having a selfish moment right now. I am really feeling cheated by life right now. I am feeling like all I ever do is lose in life. I lost my foster kids whom I love to death, I can't do foster care now because Maddy is ill, I lost my board position I was proud to have, when I got to go to Washington DC this last spring and represent ND and delegate for the kids in our state it was one of the most awesome experiences of my life, I don't know if I did a good job there or not but it was the best for me-and now I'm not on the board anymore. I had to leave my job, which is there when I can go back, but I'm not there now, with my residents, my co-workers, I have lost that sense of belonging everywhere. I have lost my financial independence, I'm so very afraid of how much more I stand to lose. Compared to Maddy it is all trivial I know. But it was all apart of me, of who I am. I just feel the loss of my former life, especially with the seasons change, it's darker earlier. I don't know. It is going to be a very long road to recovery for Maddy and for our whole family. Cancer doesn't effect just the stricken individual. Donovan honestly doesn't think we are coming home from Mayo. He thinks Maddy is going there to die. It breaks my heart that this is so traumatic for him. Maddy is so at ease about her surgery. She is the only one who isn't a total wreck. The stress is unreal. Donny is maxed out. He yells at Donovan all the time it seems like to me and then coddles Maddy so I get mad at him for getting mad at Donovan and then he is mad at me for getting mad at him and then Maddy starts crying and Donovan starts crying and I want to cry. Sound like fun?! It's not at all. We are both so tired all the time but the kids are just go go go. We have tried anti-depressants-several kinds and the side effects are worse than dealing with the stress so we quit trying. It is very hard on a persons body. I just wish we could get something to help with the anxiety at the really bad times, or something to shut my brain off at night so I could sleep. We have gone to counseling, we are trying to help ourselves. It just doesn't always help. I really feel people need to grieve for every loss they experience in order to let it go, and it just seems that I keep losing so much so fast that I don't ever get time to process anything. I feel selfish if I think about anything else or anyone else other than Maddy but it is draining to think of her cancer 24/7. It has been better with the longer break between chemos-no fever, her hands didn't peel, her counts are up today. She has a cough but I think that is because every combine in the state has been out this last week the weather has been so perfect. Everyone is having bad allergy attacks, asthma, coughing. But it is also hard to have that extra week of her wanting to be coddled when we all know she is feeling good and can do for herself. We have been pretty good about keeping the rules and punishing her as before. She doesn't get away with murder, but she has gotten whiney. She does her chores but cries most of the time, she will be happy and running and singing and then you tell her to go brush her teeth and she cries the whole time-even if she doesn't have any mouth sores or anything. She does that with getting dressed, taking a bath,ect. She still has to do it but she will cry the whole time and it really just adds tension. Then when its done she is done-it about drives us both nuts. And she picks on Donovan so bad. She is always taking his stuff away from him, going in his room,messing with him. The poor kid gets it everywhere. And he is really good about leaving her stuff alone, he never goes in her room, he just never gets a break it seems like. I know all about sibling rivalry,so I don't expect them to be angels to each other, but he at times seems more fragile than she does. His emotions are so raw some times it just breaks my heart to see him hurting. Maddy understands more than he does about what is going on and is more mature in some ways than he is and she just doesn't show her feelings like he does. I saw pictures of him at my moms house from August when he was so sick and had lost 13 lbs. He looked like a kid from a refugee camp. I about cried to see him so thin and pasty. The sparkle gone from his eye. So much pain for everyone around me. I just feel so helpless some times. And I know what is coming in the next few weeks and I just don't feel the strength for it. I don't know if I can leave her again on that table in the OR. I don't know if I'll even make it out the door this time. God better be ready with a crew of angels and a crane to get me on my feet after this one. I don't want this to be my life anymore. I want to start over, no pain, no sick kids. Can I call a do-over now? Don't you get just one in your life maybe? Just one is all I need. I'm trying to let the pain out so I can clear my soul but there seems to be no end tonight. It just hurts, and hurts, and hurts. I have always ended my prayers with "use me God, as you see, use me for your good." And I don't know what the good is going to be from all of this. I thought I was doing good by helping kids, the elderly, fostering animals, I don't see where this is going and I don't like the unknown. My life doesn't make sense to me right now and I feel lost,confused. Very scared, terrified. Somedays I do really well and I feel strong-today is not one of those days. Yesterday wasn't very good either. I do get up each morning with hope that today will be better. I guess I'll have to wait for tomorrow and try again. I feel very tired now. I'm out of kleenix again. I should just keep a dozen boxes by the computer here and save myself so many trips down to the closet. Would make sense. Won't remember to do it 2 minutes after I log of here but was a nice thought. There is a boy named Kody that has a website as he is battling the cancer monster himself and his mom has the best poem on it. I will share a little bit of it everytime I journal. Todays verse( Oh hell it is to good so here it all is): To My Child-
Just for this morning I am going to smile when I see your face and laugh when I feel like crying
Just for this morning I will let you choose what you want to wear and smile and say how perfect it is
Just for this morning I am going to step over the laundry and pick you up and take you to the park to play
Just for this morning I will leave the dishes in the sink and let you teach me how to put that puzzle of yours together
Just for this afternoon I will unplug the telephone and keep the computer off and sit with you in the backyard and blow bubbles
Just for this afternoon I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck and I will buy you one if he comes by
Just for this afternoon I won't worry about what you are going to be when you grow up or second guess every decision I have made where you are concerned
Just for this afternoon I will let you help me bake cookies and I won't stand over you and try to fix them
Just for this afternoon I will take us to Mcdonalds and buy us both a Happy meal so you can have both toys
Just for this evening I will hold you in my arms and tell you a story about how you were born and how much I love you
Just for this evening I will let you splash in the tub and not get angry
Just for this evening I will let you stay up late while we sit on the porch and count the stars
Just for this evening I will snuggle beside you for hours and miss my favorite TV shows
Just for this evening when I run my finger through your hair as you pray I will simply be grateful that God has given me the greatest gift ever given-you
I will think about the mothers and fathers who are searching for their missing children, the mothers and fathers who are visiting thier childrens graves instead of thier bedrooms, and mothers and fathers who are in hospital rooms watching thier children suffer senselessly, and screaming inside that they can't handle it anymore
And when I kiss you good night I will hold you a little tighter, a little longer, It is then, that I will thank God for you and ask him for nothing except ONE MORE DAY
This poem really hits home for me and I try to do something of its essence everyday, although the baking one didn't go so well the rest have. I pray everyday for more time. For peace, and clarity, strength. I say the serenity prayer daily-there is no better prayer. And I end my prayers with "use me". For what ever purpose I can be of use to others. I just don't know where all this is going. I guess I will just have to wait until tomorrow and try again.

Sunday, October 19, 2003 7:42 PM CDT

Well the kids got to have Halloween yesterday thanks to our family and friends who helped us pretend. It was a beautiful day- in the 70's which is not usual for this late in October. It is usually really cold or snowing by now. We had the wonderful thought yesterday that we had better pack a snow suit for Maddy down at Mayo cuz you just never know what the weather will do this time of year. But the kids had a great time. Now mom and dad were a little crabby and not as much in the holiday mood. I have been feeling like I am comming down with something for the last week. I will feel ok for part of the day and then I just feel exhausted, achy, bad headache and now a scratchy throat and cough. It is really hard to stay away from Maddy when you don't feel good. Her counts are going up and so far all she has is her constant runny nose from her tube. She has been doing really well. Her hands have not peeled or turned red yet at all, and I don't think they will. And No Fever! Now knock on wood. I can't believe we leave in three days. There is so much to do here and I am so tired I can't get anything done. The house is a disaster and I still have to finish packing. I don't know what I'll get ackomplished if I don't get some sleep. Last night it was 4:30 before I finally fell asleep. I just have not been able to get the bankruptcy off of my mind. We aren't filing yet but it is inevitable and it scares me. I don't know why but it does. I'm afraid of what all I'll lose. Some people tell me nothing and some people tell me my cars,personal items, ect. I don't think they can take my house but the worst case scenerio keeps running through my mind. The feeling after the flood when I was going to be homeless after the birth of Donovan because the government took away my land and my house with it. That fear of not knowing how I'm going to take care of everybody. The flood left us broke beyond repair I thought. I keep going back to a night in the grocery store with Donovan, it was November so he was 7 months old and we had just moved to Mayville. I was in Fargo were there is double coupons at the grocery store. I had been there for 3 hours with my coupons and calculator trying to figure out how I could feed us for the month with only $40.00. I sat down in the aisle and cried, Donovan started to cry. I was so depressed that this was my life. I couldn't buy macaroni and cheese because I would have to have milk and butter and Donovans formula was $17.00 a can so that was bought before milk for Donny and I. When I finally got to the check out I still didn't have enough money and had to put items back, it was one of the lowest points of my life. I was so humiliated and felt so worthless that I couldn't even buy groceries for my family. I am afraid of feeling that way again. I don't ever want to feel that way again and yet I know that is were we are headed. Getting Maddy cured may be my first priority but I also have to be able to provide for her. She asks me for treats and I have to tell her I don't have any money to buy her treats right now and she doesn't understand. It is the most helpless feeling. My husband and I have worked very hard to pull ourselves out of the whole of debt from the flood with no government help at all. The only help we got was from the church and if they hadn't helped us through that December we would not have made it. Our church has helped to try and save our family twice now, I can't tell you how lucky we are to have joined this congregation. We never took the easy way out and paid the price for it. We never got the grants or loans or compensations that was offered after the flood. We only had about 3 more years until we would have been debt free. We worked so hard to pay everthing off. We never got the full buyout on our house and had to sell our apartments to pay off the mortgage and then the home loan to rebuild our other house had to go on credit cards and well I know I have said this all before. I don't mean to be complaining. I'm just going through those emotions again. Frustration, fear, overwhelmed, anger, more fear and more frustration. When a person doesn't feel well it is almost impossible to keep the demons out of your thoughts. I need to be strong for this next few weeks at Mayo and I feel like hell. I don't want to let Maddy down, God I don't want to get her sick either and have to have her surgery postponed. Tonight I will try again to go to bed early and get some sleep. Hopefully my mind will turn off and I can rest alittle. Speaking of which I should go start the kids getting ready so I can go. It's 8:30 and I am drained. Keep praying for her, remember clear margins, no new tumors. Amen

Wednesday, October 15, 2003 5:46 PM CDT

Well we went into Fargo this am and had Maddy's gi tube put back in,counts done and chest x-ray. She was so good thru it all. The tube went in good with no bleeding or gaging this time and her counts seem to be going up so maybe(knock on wood) we won't get a fever. On her chest x-ray we could not see the tumor!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It could have been hiding behind another organ but it could not be very big at all. So very happy about that. Maddy has been pretty active and is drinking and eating a little today. Now if she only would have started eating yesterday we could have waited a day to do the tube. It went very well anyway and she needs to start building up her nutrition for surgery. Hoping and praying all goes well.
We are staying at the hotel in Rochester because the Ronald McDonald house is being remodeled and all of the rooms are full with long term residents. We are getting as good of a discount as we would recieve at the hotel the Ronald house gives a discount coupon for and actually it is going to be much cheaper because the Staybridge offers free laundry facitlities and a full kitchen to cook in in your room, a full free breakfast and 1 or 2 free dinners a week. Also we will save 6-8 dollars a day in Hospital parking. So we are getting the best deal we can get. We don't really eat when we are down there(To much anxiety) but we need to be able to do laundry, and the washer and dryer at Mayo takes about 3 hours to dry 1/2 a load of laundry and the machines are never cleaned. A person has to stay up all night to get 2 loads of laundry done and you still have to hang all your damp clothes up in your room to dry. They really need to invest in some new machines. Maddy is looking forward to feeding the geese, I hope it is warm enough to go down to the park yet when we get there.
I will be keeping up with Maddy's journal, I need my sanity to so I must vent to all of you. Brace yourselves as some of the interns have the bedside manner of a pitbull and I will just not be as shell shocked and meek mannared as I was the first time! Actually I kinda wish we were not going to Mayo for the surgery.(Don't tell Donny I said that!) I will miss the familiarity of the hospital and our team of nurses(good and bad) and our Dr's that we have finally developed a good relationship with. We are trusting each other and getting comfortable with how we all are. It is very important. We won't have that down at Mayo. Mayo is one of the top cancer centers and we want the best working on our daughter, but her doctor in Fargo is one of the best also. I know I have the best combo team going, I just really hate being so far away for an uncertain amount of time, away from Donovan, my house, my family and friends. I draw strength from the familiar. I get disoriented fast in strange and unfamiliar places. So I will need to keep checking Maddy's guestbook and my e-mail for all the familiar and comforting names and words from all of our devoted family and friends. So in other words send me messages-help me stay confident and grounded!
I would like to take a moment and ask all of you to include in your prayers the daughter of a very dear friend and mentor of mine for the last 23 years. I met Martha and her husband when I was 7 at a backyard bible school at the church across the street from where I grew up. I was totally enchanted with her and we have corresponded quite regularly through the years. Her daughter only wanted to be a mother and tried infertility treatments for many years but was unsuccessful. Finally she was able to adopt 2 beautiful little boys, but shortly after was diagnosed with a very aggressive breast cancer, probably caused by the fertility drugs as it is hormone sensitive. She is enduring many painful radical surgeries and chemo's and my heart just breaks for her. I apologize Martha if you didn't want me to share this personal info but for her to struggle so hard to be a mom and finally get to experience the bliss of motherhood only to now have to face cancer, I just want everyone to send her your love and prayers to give her strength through all of this.
I also want everyone to send my dear friend in Italy whos little boy is facing surgery next week all your love and prayers also. She is nervous as all good mothers are before thier little one is operated on and she has been such a source of love and support for me that I want everyone to send her love and strength now. I know her baby will be fine and breeze through this like the little amazing man he is, but moms worry non the less and all mothers fears are valed ones. So send her your prayers on angels wings accross the ocean and help her have peace and comfort right now as she always sends to me. We love you.
And if you read the names listed under the messages in Maddy's guestbook you will find the names and website addresses to the children that inspire me and give me my hope that Maddy will be fine. There are some mighty awesome kids out there and I want the best for all of them so please include then in your positive thoughts and prayers everyday.
Well I still have my e-mail to read yet and it's already 7:30. I best get moving on. I will talk at you again soon. And my love and prayers to all the kids and families I have met since this nightmare started, my life has been forever enriched by all of you.

Tuesday, October 14, 2003 8:43 AM CDT

Well Maddy's hands look awesome so far, but the tummy problems are worse with this round. She has thrown up alot and poor baby threw up her tube up yesterday morning. We didn't have it put back in yet. We thought we would give her a chance to eat on her own but so far she will only drink and is being a bugger about taking her medicine. She is so whiny and crabby the past few days its almost unbearable. She is getting constipated also and the stool softener is what makes her throw up so what do ya do. No tube to put prune juice down. The dr's also thought we should leave the tube out for a few days, She will more than likely be in tommorrow or Thursday with a fever so they thought we should wait until she comes back in. Her temp goes from 98-100.4 and down again.We have to call at 100.5 and go in at 101-101.5. I so hate the waiting game. You can't go do anything and I get sick to death of watching cartoons and doing laundry. I don't dare take anything out to make for dinner as you just don't know if anyone will be here or not. So is to life, right. I don't recall any family ever dieing from over consumption of bologna sandwhiches and Macaroni and Cheese?, Have you? Well according to my husband he is on the brink and if he has to eat one more *@#^%^#^@^% well you get the picture right?! I started to read a book called Chicken Soup for the Survivors Soul and it is nothing but page after page of stories of people who defied all the odds and survived cancer even after being given just days to live. There is a story of a young girl that survived 6 reoccurances of ewings and is now a handicapped ski instructor! I think it is one of the best books I have ever gotton. Such inspiration for the rest of us, so much hope. Theres that word again. HOPE. Yes folks I am starting to see the light,(and no I am not talking about the one in the back of the fridge either!hehe)I am really getting into the positive thought and energy thing. With my fibromyalgia I have like no energy to begin with so I am just not going to waste anymore of what little precious I do have on negative thought. Now don't hold me to that on my really bad days, I will still need to vent and fall apart but for most of my day to day I will try to stay positive, optimistic, hopeful, happy, god-now I'm pushing it -maybe start with baby steps. We will work on positive, with some hope. How's that. Totally off the subject-I had a mammogram last week and I am starting to bruise! They should warn a person about this! The mammogram itself was uncomfortable but not painful, but now-my god. Sorry just had to add that. Never thought I'd need pain killers afterward. Back to life here, We are just hanging out waiting for our trip to Mayo. If you missed the schedule here it is again-now remember if she gets a fever and doesn't recover by next Wednesday then we will have to reschedule everything. So here goes:

Oct.-22nd-Leave for Mayo-check into hotel-We are at the Staybridge Holiday Inn-1-507-281-3619

Oct 23rd-8am die injection, 10am bone scan, 1:30 anesthesia, 2pm MRI and blood work-done for the day

Oct 24th-chest x-ray and CT scan in afternoon. Then done for the weekend. Will be staying down there.

Oct 27th-11am meet with radiologists to go over scans, 2:45pm-Meet with surgeon to go over surgery

Oct 28th-Surgery day. Do not know the time yet. She should be early as she is so little. They go by age I'm sure. Then it is to wait for recovery. Anywhere from 1-3 weeks. Depending on if she gets an infection or rejects the mesh graft they put in in place of her ribs.

Now I expect she will do fine, mom on the other hand just may fall apart when I walk her in and lay her on the OR table. They have me scrub up and I carry her in and lay her down and hold her until the anesthesia takes affect. Then I make it about a foot out the OR room before I hit the floor and bawl.I would never dream of not going back with her. I want every second I can get with her, but seeing her lay there is so hard. She looks so frail and tiny. It gets to you that she has to go through all this,that she is so little. I am in the recovery room waiting for her when she is done. Usually they don't let parents back there but Maddy will sit straight up on the gurney and scream-"My momma said she would be here!Where is my MOMMA!" So they run out and get me, maddy crawls into my arms and goes right to sleep. The nurses say it is amazing that she wakes up within minutes of surgery ending and can think and talk so clearly. I'm just glad they come and get me and don't make her suffer alone and in pain without her momma.

You know what I find odd-growing up all I wanted to be was a mommy. Have beautiful little children who would call me mommy or ma. My children only call me momma or mom. Is that not strange. I never taught them to call me that, I always told them to call me mommy, but they never did-just momma. This has absolutely no relavince what so ever to what I was talking about or anything else for that matter. Just switched channels on ya there for a moment. I do that quite often unfortunately. Maybe a little attention deficit or it could be just brain fry from living my life-who knows. I think I need a nap already, lets see it's 9:30 am , I have been up for about 2 hours-yep I need a nap! Actually I need to start packing for our trip. Packing up 4 people alone is quite the chore. Donny just gets in the way and will unpack what I've just got done packing to find something and well he just drives me crazy so it is best he doesn't help. Atleast not until the car needs to be loaded and then that is his job. I wish this week was over with and we where heading down there to be done with the surgery and get the damn tumor out. It should be down to the size of an egg now or even smaller. Pray for clear margins, pray for clear margins,pray for clear margins. My new mantra. Well I must go and do something before I fall asleep. We had all of our heating ducts cleaned out last week when Maddy was up at the hospital. I can't get over the differance it has made on how everyone feels. I haven't had any allergy troubles since the furnace has started running. Anyone who has a child going through chemo or has allergies or asthma. I highly recommend a thorough cleaning of all the ducts in your house.Donny couldn't get over all the junk they pulled out. Any way-I just thought I'd add that in. Talk at ya again soon, our love to everyone and keep praying!!(clear margins, clear margins, clear margins)

Saturday, October 11, 2003 9:56 AM CDT

Oh it feels so good to finally be home!! What a long week. My back will take weeks to recover I'm sure. Sleeping in the recliner or curled up on the foot of Maddy's bed every night does nothing positive for my poor, old achy body! I just had to put the old part in now that I am over the hill! Well at least over the bunny hill! I thought that was cute. Atleast I amuse myself, right?!Maddy is now done with chemo before her surgery. She had to have a blood transfusion on Friday already before we could go home and she has thrown up quite a bit the last few days. But now that we are home she is drinking juice and brushing her teeth, all things she doesn't do during chemo. Her mouth hurts so bad she won't eat, drink, or brush. So we just have her rinse with mouthwash and give her her tube feedings at a very reduced rate. We have to slow it way down when she starts throwing up so she doesn't end up getting as much nutrition during the day, but she usually will make up for it after we get home. This is her tentative schedule for Mayo as of now: Leave for Mayo on the 22nd. Donovan wil be going to his grandparents house and my brother Jason will take care of our animals and house while we are gone. On the 23 she will start a dye bone scan test from 8am to about 11am. Lunch break-although she can't eat at all that day-no tube feeding, and back at 1pm for an MRI. She has to be put under for that. Then we are done for the day. The 24th she will have a CT scan and chest x-ray in the afternoon. Then it is to hang out around Rochester all weekend. All of her test and pre-op appts are out patient so we will have to be staying in a hotel this whole time. Then on Monday the 27th she meets with the surgeon for her pre-op and her surgery will then be sometime on the 28th. Hopefully in the morning. She won't get admitted to the hospital until the 28th and then anywhere from 1-4 weeks for recovery. It all depends on what they find, how much they remove, how well she tolerates the surgery and if she gets an infection. We will need all of you to be praying really hard on the 28th that they get 100% of the tumor so there are clean margins left all around the surgery site and then pray for all it's worth that she doesn't have any cancer cells popping up in any other part of the body. With ewings most patients have cancer cells in thier lungs after surgery and those cells can turn into tumors so pray for clear lungs too. Heck, just start praying now for everything and maybe we will have a miracle when we get down there. Her dr's here say they think she looks awesome, but still won't give you any hope for the future. I will take the awesome part and add my own prognosis that Maddy is going to kick ewings butt. She is so full of spunk and life that I just can't believe that this will be the end of her. Without positive thinking there can be no positive results, right?! So I will be as positive as humanly possible for me and just count on faith and the miracle of prayer to do the rest. On the day of her surgery I ask that each and everyone of you that read our journal and love this inspiration of a child will all say a prayer for her at the same time as the start of her surgery. I will post the exact surgery time when I find out, and if we all say a prayer at the same time all over the country and even accross the world, a miracle will happen and she will be fine. I do beleive in the power of positive energy and what is more positive than prayer. So I will keep you posted on that. So far Maddy's hands look good, only red, and not purple or peeling yet so lets pray that she stays that way. It's only 10am and I already need a nap. We didn't get discharged last night before 10pm and didn't get home until after 11pm. We got Maddy all ready for bed, Donny carried her into her room and she started throwing up again. So it was after midnight sometime before we got her cleaned up and tucked in and after 1 am before we got everything cleaned up and to bed ourselves. Donovan woke up when Maddy got sick so he was up crying to. There is a mountain of dirty clothes from the hospital to do but I am lacking motivation. The kids were up by 7am and have been go, go, go, ever since. Maddy unfortunately has started wetting herself evertime she falls asleep up at the hospital so she went threw all of her pj's and clothes rather quickly. She will sleep so heavily that she doesn't wake up to potty and she gets so much fluid from her IV she can't help it. Next chemo I will just put her in pull-ups so we don't go through so much laundry. Well I had better find some motivation and go start the laundry so I can repack her bags. Her counts are already down and she could very well have a fever by Monday, which is only 2 days to get everything washed, dried, repacked, bills paid, house cleaned, oh I need a nap!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thursday, October 9, 2003 11:19 AM CDT

We are half way thru her last chemo before surgery. When she is done with surgery she will be almost half way thru treatment-Thank God. She is doing very well right now with her chemo and her hands are a little red but not peeling any more than they already were. She says they don't hurt right now so that is good. Her throat is getting sore again from the chemo but no yeast or mouth sores yet. We work real hard to prevent them and the pain it causes. The weather here has been in the 80's- not usual for October so Madddy and I have been going for walks in the am when the sun isn't so strong that it could burn her. The leaves are starting to turn colors and fall off the trees. I love fall, the clean crisp air, the colors of the trees and the blazing oranges and reds of the prairie grass in the ditches. There are certain grasses that turn a burnt amber color and when you look out over a feild it almost seems to be on fire with all the reds and oranges. I feel like I come alive in the fall. The weather is cooler and the bugs are mostly gone. I love the colors, the cool breezes with waves of warm air in them. I love the holidays are coming and that means family and friends to have over to celebrate, decorating the house, cozy nights curled up with the kids, a bowl of popcorn and a good movie, and baking. Oh no-not baking! My holidays will all be ruined now! Nobody will want to come over, they all know now that I can't bake. What to do, hmmmmmmm. I guess I'll just have to start practicing right?! Any volunteers for the burnt' cookies and fallen cakes, the runny bars perhaps? Don't you worry now- there will be plenty for all I'm sure. I think I just may not be able to have as much "help" when I'm baking.Atleast not if I want it to turn out right!? Well my birthday was quiet as usual. My sister-in-law made a wonderful supper and we had that with my parents. I spent most of the day cleaning and doing laundry. Donny was doing yard work and that was all there was. Maddy had her kidney test on Monday and I was so proud of her. She laid so still we didn't have to put her under anesthesia. Which the less of that the better. Her test results came back and everything is looking good and functioning fine. Another blessing. I was able to talk with our pastors this week and Pastor Jeff asked me where I get my hope from because non of Maddy's dr's give us any. I never really considered my self as having much I told him-I struggle everyday with my fears and the negetive thoughts-but then he said you must have hope or how could you get up everyday and do this?!. I told him I didn't have a chioce, and he said but you do. Some people wouldn't chose to. So he really got me thinking-which thanks to him kept me up most of the night!-(I was up with Maddy anyway, so don't feel bad!)-I realized that I do have a lot of faith in the strength and resileince of my daughter, and I do have a belief that she will fight with all she has got. Now - am I convinced she will be here this time next year-not entirely, but I never considered not fighting until there was absolutely no fight left. My whole life has been kids and animals and old people. I am a care taker in this life. I have taken care of the elderly for the last 15 years. Kids for the last 6, and what ever animals I could for all my life. I guess Donny could be considered a big kid so that would make that 12 years-then huh!I never would have not considered taking care of Maddy. It never entered my mind not to get up every morning and carry on for her. That is were this is so important-I can let go here, I can let out my fears and pain. I can be weak and let you pick me back up again-but to not take care of Maddy and fight with every ounce of my being-NEVER! Wasn't that an inspirational moment! Donovan is home from school and not happy so I had better go and see what he needs. He said he is upset about Maddy so I want to see if he will open up to me. I will try and journal again when we get home. I came home last night for some sleep but will go back up this evening to be with Maddy until she gets to go home Friday night. Keep praying for us, we need to keep them coming. Especially when she has surgery-pray for clear margins.Just pray for everything. Love to you all.

Wednesday, October 1, 2003 9:27 PM CDT

Thank god for bed time!!!!!!!!!!Maddy gets so fussy at the end of the day and then Donovan just feeds off her. Donny also gets pretty fussy after supper so it is just so much fun around here!! Can you note the sarcasm?! I was hit with a low blow today. I can't bake anymore. I think all the stress has ruined me. I tried to bake with Maddy today and nothing we did turned out right. (Alright-I baked and she spilled things and licked the bowls) But still I think I have lost my touch. My friend told me I am just out of practice but I think it goes deeper than that, I have nothing more to live for. OK seriously now it was depressing but not suicidally.hehe. Any who, I have to take the car into get fixed tomorrow and Donovan has a dr. appt. Why is it I can go to town and come home with less than half of what I needed? I cannot remember anything at all anymore-like how to bake. We went to Fargo yesterday and I didn't get hardly anything I needed. We went to Walmart to get Maddy and Donovan socks, which just so happen to be on sale, only they did not have anything at all left in Maddy or Donovans size. Every single other size is fully stocked but not the ones I need. They also had not a single roll of paper towels, and only 2 of the barbie toothbrushes Maddy uses. We have to change her toothbrush about twice a week so 2 just doesn't do. They were also out of the gauze bandages we use for her hands. By then I was so frustrated I totally blanked out the rest of what I needed and since I've been so brain damaged lately I can't think to make a list we just went home and so now today its like I don't have milk, bread, butter, paper towels and so on. And for those of you that know me there is no other store than Walmart so god forbid I would have gone to Target or somewhere else to get what I needed. Well atleast tomorrow our appt's are in Grand Forks so I can go to the Walmart there. I guess you just gotta be a mom to appreciate Walmart. Donny says I don't go there to shop but to take inventory. Hey-you just don't know what you can't live without until you've gone and checked it out-right ladies? You have to be a woman to appreciate that.
Maddy's hands are still peeling and are red. The singulair is just not doing the trick but do I risk an infection and kidney damage with the steriods or do you risk gangrene in the peeling hands. Lets ask the magic 8 ball shall we?!Well there you have it folks-the 8 ball says go for the steriods. God thats how I feel some times. I just don't know what is the best thing to do and since this is such a rare reaction to the chemo drugs the dr's aren't exactly sure as to what to do either. She will barely have new skin on her hands on Monday whe she goes in for chemo. They are doing a kidney test on her before her chemo and I wonder if it's not to check because she has had 2 rounds of steriods already. I don't know. Her blood work all looks good but chemo wrecks havoc on your body anyway so there is lots of testing.
I cannot believe I'm going to be 30 on Sunday. 30 isn't old but it's crossing over into a different perspective. When you are in your twenties you still think of yourself as a kid and so does everyone else. Although I know those of you that know me have never thought of me that way. I had to grow up so fast and have been through so much in my life even before Maddy was diagnosed, that nobody ever guessed my age to be in my 20's. Hell someone asked me the other day if I was turning 40 this weekend-that made me feel good. Do I look that old? I feel haggard, but I didn't think it had aged me a decade! I don't know what to do either. I wanted to take the kids to the movies but there is not a single kids movie to go to except Finding Nemo and we went to that when it first came out months ago. Going out to eat is just a pain with the kids and I don't want to leave them anywhere either. If you have any suggestions let me know. I'm drawing a blank. Which is my normal state of mind lately. I'm either on total overdrive or spaced out. No happy medium. No happy anything lately. I'm in a mood tonight can you tell? I feel like we are in this parallel between so-called normal life and cancer life. Having this good week to be home and have Maddy feeling good is eery. You look at her and she has a tube in her nose and no hair on her head so you know she's sick but she doesn't act sick. It's weird. If she had hair and no tube a person could almost forget she is battling cancer. She also has eaten food this week. Crab apples and nachos. What a combo. But atleast she is eating something. She also pooped 2 days in a row without laxatives, YAHOO! Sick I know but exciting for us. I hate to think of Monday and starting this all over again. Well I can't dwell on it and Donny wants his turn at the computer. I need to chill out and go to bed. Geez - I can't believe I can't bake anymore!!!!!:)

Monday, September 29, 2003 11:03 AM CDT

Last night was great. So many people who care about us and Maddy. She was in such a good mood and it was the best being surrounded by our family and friends. There were alot of other activities going on and the turnout wasn't as much as we had hoped but it was a success anyway. What ever is there will help us tremendously. Now that Maddy is on the longer treatment cycle I will not be going back to work in the spring as I hoped but more likely in the fall and that is only if the cancer doesn't spread and she has clean body scans. It will be 2 years before we can start to relax about whether chemo worked or not. It seems that it usually reaccurs in the year after the year of treatment is completed. We are crossing everything we can and praying alot. Maddy's hands are still peeling pretty bad and there is no way that she could have started chemo today anyway. She still complains her tummy hurts and the backs of her legs really bother her, but other than that she is active and happy. Watching her run around the church last night you would have never guessed she was so ill. She was zipping around, visiting everyone, making prayer bracelets and pictures. She even drank some lemonade and ate some cookie and bar! She hasn't drank anything all week and hasn't eaten food in weeks. She then went to her cousins house and her Auntie Karla had picked some apples, little crab apples and Maddy brought one home and ate the whole thing!!!!!!!!! We are definetely going to have to get more. She wanted another apple this morning and all we had was pie apples from Karla and it wasn't as sweet so it didn't go down well. I can't beleive she actually ate!
Donovan is at school and Donny is outside doing whatever and Maddy finally went and sat down so I have a few moments to journal. I don't get as much of an opportunity to do this as I thought I would. The days go by so fast and I am so exhausted at the end of the day I can't type. Everyone asked me last night how I was doing and I really had a hard time verbalizing. I guess I should have rehearsed something before hand or lied and said fine, but I just couldn't lie, but I couldn't grasp what I wanted to say either. So I will try now-alittle late but here goes- How am I doing- I go to bed everynight with my baby daughter laying in her bed in the room next to me fighting for her life and not knowing it, the last thing I think of every night is there is no guarantee this will work, the last thing I see before I fall into a fitful sleep is her face in June before all of this when she had color in her skin and hair with curls and a personality to melt your heart. I wake up every morning to the sound of her crying, panicked that something is wrong, I spend all day everyday going through the rituals of cleansing and bandaging her hands, treating her feet, giving her meds and food in her tube and fluids, obsessing over her bowels as a rectal tear from a hard stool could be fatal, I look at her and my heart aches so bad I have to bite my lip to hold back the tears. I am scared every minute of everyday. I feel guilt, anger,burn out,terror,anxiety,frustration,helpless, overwhelmed,moody,aggitated,sad,inadequate,weak,pain,and more guilt everyday. I know she is a strong little girl and she is doing good. I try very hard to beleive that she will beat this. Unfortunately I know too much about some things and my mind gets in the way of my optimism. If it weren't for Donny telling me she is going to beat this I don't know if I would have any faith. I am so afraid to trust my feelings and be happy because so many things have happened to us- everytime I thought things were going good then something really bad would happen. I don't trust happiness. It scares me to hope. I pray for serenity everyday and somedays I'm good and somedays I can't turn my mind off. Today I don't know if it's just because I'm so tired or what but the emotions are alittle raw. So I guess somedays are just better than others and this last week was hard for Maddy ,me,Donovan, and Donny so my spirits are down. I just proof read and I sound like a basket case don't I. I'm strong when I need to be but when I have quiet alone moments like now I try and let go alittle so I can stay strong. So I guess on the how am I -Good, Bad, and Everything in between. But most importantly is we have all of you that care and I honest to god mean it when I say that there are some days that the messages of encouragement I get from everyone in Maddy's guestbook and in my e-mail are what get me through my day somedays. If I didn't have so many positive people in my life helping me stay strong I'm not sure I could do this. But reading that you all believe she will be fine makes me think that she will. So please don't stop writing to me! I need your support more the closer we get to surgery and finding out if it's spread. And there will 6-8 more months of chemo after surgery. So I hope you all stay with me for the long haul. We couldn't do it with out all of you. Thank you for everything. And to the crew last night that made the benefit happen-God Bless you. And I do have to add that I have the best bosses you could ask for. I am continually amazed at their support for us. And just knowing my job is there when I am ready to go back and I will have them to work with gives me security and hope. I know some people from the home are going to think I am loopy but there is an awful lot of support from our DON and Personal director that you don't know about. They do not brag about what they do but their support has been awesome and the little things have meant mountains to me. Thank you both very much. I'm never sure If anyone ever wants me to use names so I usually don't but you know who you are so thank you. Donovan came home and Maddy is still sleeping so maybe I should go out and play with him before she wakes up. I will try to write again soon.

Friday, September 26, 2003 0:41 AM CDT

Well it is 1 am on Friday and we are hopefully going home in the am. Her hands aren't as purple or red but one did crack and there appeared to be internal bleeding in her palm. She was horribly constipated and may have to have an x-ray in the am to make sure she isn't impacted. That could mean surgery. She has been vomiting daily but we have managed to keep her tube down and in place. She has complained of an awful lot of stomach pain with this last round. She also says her legs hurt all the time and she has an awful yeast infection on the roof of her mouth going down her throat. She has had a few headaches to and I AM JUST HOPING THAT IT IS FROM THE MEDICATION AND NOTHING ELSE.She wants to be around people and play with her cousins so bad. The benefit on Sunday will be good for her. The benefit is at Mayville Lutheran church on th 28th of September from 4:30-7:30. It is a free will offering Spaghetti supper. Donations can be sent to :

Maddison Williams Benefit Account
c/o The Goose River Bank
Mayville, ND 58257

Maddy is so looking forward to her "party". I know it will be awesome. With all the love and support we have already recieved from our family and freinds, the church, the collage, the wonderful volunteers at Make-A-Wish. We are all excited. I am hoping its successful enough to get us through till spring when pray to god MADDY is in remission and I can go back to work.
Donny and I have made the very difficult decission to take Maddy off of the 2 week protocal and put her on the standard 3 week cycle. Her meds won't change but hopefully this will lesson the intensity of the side-effects and give her tiny body time to heal alittle more before we hit her again.
I selfishly want to spend my 30th birthday on OCT.5 with all my family, not sitting in a hospital romm watching my baby suffer. She told me today she wanted momma to have a birthday party and then started to cry saying she wouldn't get to be there because I'm always in chemo. That broke my heart right there. My baby needs to enjoy her life and be happy and apart of what is going on. I do not know how much life she has left so I need to make sure she has time to enjoy it while her counts are up and she wants to. She needs that extra week to be a kid. When her counts are low I am very restrictive but when they are up she can do what she needs to cope. And right now that means birthday parties, carving pumpkins, going trick or treating, decorating the house, going shopping with mom, seeing her grandparents, wagon rides in the park,her cousins being over to play with her, having sleep overs,feeling normal.I can't ease up when her counts are down but we can give her some extra time to be a kid.
I was thinking tonight that next May when we do the Relay For Life Walk for the ACS that Maddy is going to be in the front row leading the survivors around the first lap of the track, singing and dancing the whole way! She will have the largest team- We will be the sunshines-Lighting a way for a cure! We will be decorating with large smiling sunshines and butterflies every where. Maddy will pass out candy to people as they pass by, and more than likely hugs and kisses too. Anyone who wants to feel the light and strength that just radiates from her like a sunbeam can join our team. I want this to be the best year for the American cancer society and I want Maddy to have the biggest team. Everyone who supported her and has loved her through all this should be there as she is announced as a SURVIVOR!!!!!!!!!!! Can you tell my anti-depressants are starting to kick in?! I know she is going to beat this. There are to many people out there loving her and supporting her and our family. She is going to make it. She started singing you are my sunshine again today and she told me she was my sunshine so she will never go away so I will never be sad. What a kid. I love her more than life itself. She is so beautiful in spirit. To see her with some of the nurses up here just makes me beam with pride. She makes them smile and feel good. She brightens your day. I was laying on her bed and she came over and put her very special blanket over me because she thought I looked cold. So I told her I'd warm up quicker if she would cuddle in with me and she was just glowing. She snuggled in so tight and then told me I was the best momma ever. And that she will always be my baby. Then she wonders why I am crying all the time! What a kid.
Donovan continues to struggle with his feelings of fear and jealousy towards Maddy right now. He feels like no one loves him only Maddy and despite all the one on one time we are giving him he still has a hard time so he will start seeing a counselor to work out whats going on inside him. He has been refered to as having a traumatic stress syndrome. Not post traumatic because he is still living in it. The hospital pscychologist came to see me today and she started talking about how severely an illness can affect siblings and the effects can be life long and debilitating especially in younger children. I never realized it was such a wide spread serious problem. Ya learn something new everyday! I'm glad I know and am getting him the help he needs. So cute-Maddy is talking in her sleep right now. She giggled. She must be dreaming of seeing her cousin ALEXIS.She got to call her tonite and she was so excited about that. She was in a pretty good mood today and am looking forward to going home tomorrow. Well its 2am and I took my sleeping pill at 11pm-shows you how good they work-huh!So I best get some sleep before the dr comes in bright and early.

Tuesday, September 23, 2003 2:31 PM CDT

I'm not sure of my last entry, I'm thinking it was Friday or Saturday. Anyway. Maddy went in for counts yesterday and ended up driving her down to Fargo for a blood transfusion. Her hemoglobin was 7.7. Anything 8.4 or under they automatically transfuse. When we got to the hospital her hands and feet started to turn red and she is peeling under her big toe. We are going to try a new med to see if it helps her. Her temp goes from 98.2-100.9. Right now she is sleeping and her temp is down to 98.2. She threw up this am which is unusual for her this far out from chemo. She has really had alot of stomach pain with this round. We had to leave the hospital last night after her transfusion was over at 11:55 pm. That really sucked having to wake her up and drive an hour home to wake her up again. She cried all the rest of the night. We were so tired this am after being up all night with Maddy that we forgot to take Donovan to school. Now I'm just waiting for Maddy to wake up and her temp to go up. I packed the car and am ready to go if needed. We couldn't stay at the hospital because blood transfusions are considered out patient procedures and since she was done before midnight our insurance would not cover her to stay overnight. Medicaid wouldn't pick it up either because there was no admittion to the hospital for an overnight from her dr. I am really suprised at how tired she is today. Usually after a blood tranfusion a person would be more perky and feel better. I'm hoping it's just because she had a rough night. Last few nights she has been saying she is scared to be by herself especially to sleep but she can't explain why. Last night I had to bring her to bed with Donny and I because she would wake up every 10-15 minutes crying for mommy to hold her. I wish she would/could tell me what is scaring her right now. She was just wired for sound all weekend. She literally did laps around my living room all weekend. Running, playing tag with Donovan, tickling, just more energy than she should have-not napping and now today she is just wiped out. It is scary how fast she can change. Like yseterday you never would have guessed her blood count was down so low and now today you would never guess that she had just had a transfusion. She hasn't had any feeding today or extra fluids and that worries me. She got what she was suppose to last night during her feeding but I like to give her atleast fluids every 2 hours during the day. Well she just woke up and is crying for me. I'll write more later.

Saturday, September 20, 2003 11:26 AM CDT

Well it's Saturday and we are still home. Maddy feels warm on and off so I'm thinking we may not get to stay home for long but for now we are here. She has had a lot of stomach pain after this round and is not tolerating very much of her feeding. We went from 4-6 cans a day to about 1 1/2 cans and very little juice or liquids. I don't want to push it with her because if she starts to throw up the tube will come out and I don't want to put her through that again if at all possible. I am trying 2 oz of fluids every hour and a half or so today to see if she can handle it. She will get a UTI if she doesn't have enough fluids and that would mean staying in the hospital with a fever. All I can do is try.
On Thursday we had between 20-30 students from the college come out and help us paint, remove carpet, take out furniture from the basement, move the dogs and thier dog kennel, clean up the yard, and much more. It was amazing. I never expected so many people or to get so much done. The students here at Mayville state are awesome. Thank you guys for everything!You are the best! Pam from Make A Wish came to get Donovan this am and take him to a football game. They are going to give Donovan the game ball signed by all the football players and then they are going to have him run out onto the feild with the team to start the game! I am praying he listens and behaves! It is nice to have a break. Donny is mowing and I am trying to catch up on bills and mail. I am really looking forward to Maddy's benefit and getting to see everyone. The fundraiser for Make-A-Wish at pizza hut was unbeleivable. I can only hope we have as many turn out next Sunday. People were lined up outside in the rain just to get in for the buffet benefit and it was a huge success for them. Thank you to everyone who reached out to me last week when I was feeling really low. And special thanks to my crazy Italian freind, Sabrina who has brightened many a day for me. Carassima Amica Sabrina, Deine American Freunde, Holly. Ciao. I'm learning a little Italian. Thank God I don't have to try to say it-I know I would mutilate the pronounciation. What a beautiful language though. Well I need to go will try and update again tomorrow. Pray for no TEMP! Love you All!!!!!

Wednesday, September 17, 2003 11:59 AM CDT

What a gloomy day today. I think it is cotributing to my mood. Donovan went to school this am and I was alone for the first time in weeks. And I just can't hold it together. I think I've gone through a box of Kleenix already and it's not even noon yet. I miss Maddy. I'm scared to death. A little boy died last week. He had just turned 3 and had leukemia. Maddy had gone to his birthday party. It made things a little to real for me today. I can't lose my baby. I can't let this monster take my baby away from me. I want her surgery over with and the tumor out of her body. But I don't want her to have to suffer all that pain either. I am having a bad day today. I gotta try and snap out of it. The Make-A-Wish fundraiser is tonite and I need to not be crying or how much fun will that be!? I said I would make some yo-yo ballons for them to sell also so need to get that done yet. The storm last nite kept me up and the power went out so our clocks quit and Donovan was late for school this am. The bus should be bringing him home any minute now. Atleast no one has called and said I needed to come and get him so I am assuming the bus is bringing him. Maybe I shouldn't assume. Maddy has been complaining alot about her stomach hurting with this round and her hands are getting red. Otherwise Donny says she is just really moody. She has been very moody lately. And demanding. I guess I would be to if I was her. Well I think I had better go call the school and find out were my son is and try to shake this awful mood I'm in today.

Tuesday, September 16, 2003 4:59 PM CDT

Here we go again. Maddy went in yesterday for counts and they where up enough to start her chemo. It was pretty late in the day so she won't get to go to the fundraiser for make a wish as she won't be home until Thursday. The dr said if her hands get really bad again with this round of chemo and her counts don't come up that he will want to take her off of this prtocal. I don't know what we are going to do. We were told that this protocal would give her the best chance at a cure but she could also get a life threatening infection from her peeling hands and feet so I don't know what we will do. She goes back to Mayo on the 8th of October for a cat scan before her surgery, although we haven't been given a surgery date yet. She made it through with no fever and had a blast in the parade. She has gotten really demanding lately and it gets alittle draining.
Donovan was in the ER last night with a fever. He has an ear infection and possibly strep so he had to stay home today and I missed going to the Radio show with make-a-wish this am. Donovan was up most of the night crying and still had a temp this am. He is better now and will go to school tomorrrow. I also had to cancel his dentist appt. and Donny's eye appt. I so hate not being able to ever plan anything anymore. I always have tried hard to be dependable and always keep my commitments so this is really frustrating for me. It so goes against my nature. I like things planned, organized, consistant and my life is no longer any of that. I am praying things work out and we get some volunteers from the collage out on Thursday. If the weather cooperates we could really get a lot done. We need to get a lot done yet. Winter will be here soon(Happy thought!) and we will be spending most of October at the hospital. For some reason Maddy and Donovan are so geared up for Halloween this year they want it here now. Maddy is constantly asking me for her pumpkin to decorate and everynight when it gets dark Donovan wants to put his costume on and"go to" Halloween in Fargo. Every year we go to my parents house and then to the nursing home my grandpa is at and then to my grandmas house. Unfortunately I believe Maddy will probably be in the hospital so hopefully the hospital does something for the kids or else we will have to rely on our friends and family to maybe dress up so we can trick or treat on a day that works out-hint, hint. We will have to see how everything goes. It's not like I can make any plans or anything. Maddy's benefit is coming up soon and I hope she will be well and able to attend. From what I hear there is going to be alot going on so please everyone come! I have just been trying to catch up on house work and laundry. You just would not believe the amount of laundry I have to do. Donny helps to but it is alot. I never seem to get all the baskets folded and put away before there are 20 more to do. Sometimes I cheat and just leave the baskets in the rooms until they have been emptied from use. Thankfully I have alot of baskets. Speaking of laundry my dryer is beepimg and I have 2 loads waiting to be dried yet before I can call it a night so I best get going. Send Maddy your love and pray her hands and feet don't peel or blister!

Friday, September 12, 2003 5:11 PM CDT

Well Maddy went in for chemo, had a blood transfusion instead and is coming home. Her platelet count is to low so they think they might have to wait a week for her next chemo. The fargo dr's are waiting on a reply from Mayo as to what to do since she is on a strict 2 week protocal. This will push her surgery back and I want her surgery over with and that tumor out of her body!!!!!!!!!!!!!!!!!! This is all very frustrating. Well nothing I can do.
Pam from make-a-wish(In Mayville) called and is going to have Maddy and Donovan ride on their float in the parade tomorrow in Mayville and hand out candy. Donovan is so excited. I don't know if Maddy knows yet. Atleast her counts are up enough for that. There are some volunteers coming out tomorrow to help Donny while we are at the parade with some carpet removal and hopefully some painting and frame work outside for the dog kennel. We really need to get some of this stuff done. But when her counts are to low we can't do anything. Donovan was such a good helper this morning. He vacuumed the stairs, the upstairs bathroom and my room! He even picked up his toys in his room so the floor could be cleaned. He is totally different when Maddy isn't around. We had a tickle fight, raced cars, made cookies. I hate to say it but we both needed the break today. He listens bettter and is so much more willing to help and is much less whiny. We all went to bed early last night and I think we will again tonight. I was so tired yesterday I felt like I needed 2 days worth of sleep by 11am. The whole day was a blur of exhaustion. I could have cried, I was so tired and heres Maddy running around, singing and dancing. No naps for this kid hardly ever. She is go go go all the time. We had to go to town yesterday(Fargo) and at Walmart she decided to be a mermaid for Halloween. And she wore the blue wig all day! Atleast she wanted a wig! Donovan picked out a Hot wheels race car driver costume-close enough to Jeff Gordan as we could get! He is happy, she is happy, so who cares-right?-Now just watch on Halloween she is going to want to be wonder woman and Donovan will want to be scooby doo. Maddy more than likely will be in the hospital and Donovan will be with Jean so what they got is it.
Donovan just came in coughing and he feels warm. I had better go get the thermometer. Why not-I need more sick kids now don't I?!!!???!!! Can you hear the sarcasm?!!?

Wednesday, September 10, 2003 9:02 PM CDT

Still no fever! Her counts were coming up as of Monday and she was/is borderline for a blood transfusion but her color has been good and she has been pretty spunky. She doesn't nap during the day-god I wish she would- and goes until 10-11pm. I want to go to bed around noon everyday and Donny usually is already napping by then. It has been a draining week even though we were at home. When you are at home there is so much more you try to do and the more demanding Maddy and Donovan get. They both want 210% all day everyday from both of us and it is just to hard to give them both all that they want from you right now. Even if Maddy isn't up alot at night it's still hard to get to sleep. As soon as we lay down our brains go into superdrive and when we are actually together and able to talk about whats on our minds we end up talking most of the night. It's all or nothing. Donny and I either don't get to talk to each other for days or are up all night talking. We need to though. But I am definetly tired. Donovan is going to start everyday half days on Mondays. He has been falling asleep in the afternoons so the school suggested we switch his class so we will see. We drive him to school everyday otherwise he would have to sit on the bus from 7:15-8:25am and that I feel is to long. But the problem with half days is there is no bus to bring him home. He does ride the bus home because we are the first stop. The school was able to arrange the bus to bring him home at noon everday so hopefully this will work better for him. He is really having a hard time with all of this. He is angry and feeling left out and no matter how much special time Donny and I set aside for him it just never seems like enough. We are going to bring him in to talk to someone about his feelings so he can learn to process all of this. Donny and I try but somedays just don't know what to say. I feel like my whole family is out of control. Somedays there is to much pressure, to much stress, to much life. Donny and I both have been having really bad migraines from the stress and that never helps. Maddy has been complaining that her stomach hurts on and off all day and I don't know if it is because she is hungry or what and she doesn't seem to know either. Will have to ask the dr on Friday when she goes in for chemo. Well that's it for tonight-I'm pretty tired.

Sunday, September 7, 2003 8:35 PM CDT

We made it through Sunday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
A major landmark for her! Her counts should start coming up tomorrow or Tuesday so everyone pray real hard she makes it! I so want her little body to have a rest from the antibiotics,needles,IV fluids,the tape on her port that makes her skin peel off on her stomach. Her hands look really good today. A little red but not purple and peeling. She has a huge blister on one of her big toes that we are wrapping with an antibiotic ointment, but other than that she looks good. Her bottom is finally healing up and her skin is looking a little more normal. She goes in to the Mayville hospital for blood counts tomorrow but I am going to have her wear a mask just incase. I'd rather know I did everything possible to keep her healthy than to drive myself crazy trying to figure out what I could have or should have done. It has been a pretty uneventful day-thank god, and I even dared enough to rent a movie for Donny and I to watch tonight. If I have to watch Rugrats one more time I'm going to be sick. She goes in streaks where she wants to watch one movie over and over and over again for days on end until you just about go nuts and then she has a new favorite. Gotta love kids. Maddy has a virtual quilt online now made by "angels" online so please check it out. Maddy saw it today and just loved it. All the care-bears,barbies and pictures of her thrilled her so much. Go to http://quiltsoflove.com/quilt/maddisonW/maddyW.html This will take you there and then there is a link to her website from there. Like I keep saying-this is such a journey in human kindness. It is the little things that really can make a difference. Somedays start out really bad and I will go and read in Maddy's guestbook and will have a turn around in my day and my attitude. Thank you everyone again. This is Maddy's favorite bedtime prayer: Now I lay me down to sleep, I pray the lord my soul to keep, May angels guide me through the night, And wake my with the morning light.(I grew up saying the version that had "and if I die before I wake, I pray to god my soul to take", now I just can't go to bed on the thought that she or anyone could or would die in their sleep so we go with the more optimistic version!) Her great grandma gave her a little white bunny doll in a pink dress that says that prayer when you squeeze her. She didn't say anything about it when Great grandma was there but after she left she kept squeezing the bunny and finally she said "Mom, How did she get Donovans voice in there?" I had to laugh. It's a little southern girl that says the prayer-sounds nothing like Donovan-but she is convinced great grandma got Donovans voice in there. Moms prayer is: God grant me the serenity to accept the things I cannot change, The courage to change the things I can, And the wisdom to know the difference. Good night!

Saturday, September 6, 2003 7:29 PM CDT

I cannot believe I am still home on a Saturday night. We looked back in our journal of Maddy's care and she has never made it at home 8 days out of chemo before. She did make it until 10 am one Saturday but her temp had gone up and down Thursday night and Friday and were told to use Tylenol unless it went up to 101.5. She had stayed around 100.5-101 but not over until that Friday night-Saturday morning when we took her in. She feels slightly warm but her temp is around 98 so that is awesome for us. Her temp usually runs low-in the 97 range so if she goes up to the upper 98's then I know a fever is coming. I am crossing everything, but still not holding my breath. I moved our hospital bags down to the entry way by the door so when/if we need to go we are ready. We had two wonderful girls from the collage come out today and mow our lawn and pull all the weeds over-growing the front of our house. Thank you girls very much! They are both from the make-a-wish group in Mayville and the best for coming out and helping out. We couldn't bring them in to meet Maddy but they hopefully will get to see her at her benefit on the 28th of September. We are going to ask to delay her chemo for a few days so she will go in on Monday instead of Friday. The dr's asked Donny if he wanted to do that for the next round and he said no, so I don't think they will object. They would prefer her to be in during the week when they are all there instead of having the on-call pediatrition doing most of her care on the weekends. I tend to agree with that. She has been in a pretty good mood. She did take a nap this afternoon, which made me think she was getting a fever, but was fine when she woke up. She amazingly doesn't usually nap unless she is at the hospital and had something that makes her drowsy. Even then she doesn't always. They tried giving her ativan to get her to sleep and it took 2-3 hours before she fell asleep. Even after a few days on it she didn't get drowsy! Mom had really needed her to sleep those days to! As glad as I am that we are home, having 2 kids fighting for 120% of your attention is almost harder than being up at the hospital. They are constantly momma,momma,momma, and pulling on me and whining. It doesn't help that I am just so tired from getting up so often all night. I am constantly giving Maddy water and pediasure through her tube all day so she stays hydrated and doesn't get a UTI. She also gets horribly constipated so I want to help out with that to so needless to say she pees all nite. I usually have to give her 2 tsp of liquid colace everyday and 1-2 tsp of lactulose(laxative)with that and she still gets plugged up. If she doesn't go everyday her temp starts to go up. We are slightly obsessed with bm here. That sounds awful doesn't it. I never thought about how intuned you can become with someone else before. I will start telling the nurses things about her body funtions in relation to whatever and some of them just stare at me,in the beginning some believed me and some didn't but now they all do. Right now Maddy is in the tub washing her elephants that she bought with her money she "traded for" at the hospital gift shop. Maddy started trading her visitors pennies for quarters and dollars and then when she had enough she went down and bought herself an elephant bath set and a doll for her cousin Alexis. Hopefully she can give it to Alexis this week before her chemo starts. I want to take a minute and thank everyone who has called, written,sent something,helped out in any way,lent support,in any way. Our lives somedays over whelm us and I don't know how we would have managed somedays without the love,help and support from all of you. There are some days that the messages in Maddy's guest book is all that gets me through the day without falling totally to peices. It amazes everyday at how many people care about Maddy-people we don't know and people from all over the world. I had told someone that this is not only a journey through the terrors of cancer but also a journey of love and compassion and human spirit. The fact that so many have embraced us into their lives gives me strength and reading about their life stories and stuggles gives me hope that Maddy will to fight this monster and succeed too. Our lives will never be the same again, but that will not necessarily be a bad thing in all areas of our lives. We will be needing more help with various things around the house and will put up a list later in her journal so those of you that would be able to help with whatever can let us know. I have a migraine tonight and have reached my limit for journaling. Thank you again for all the love and prayers.

Thursday, September 4, 2003 10:37 PM CDT

What a week. Maddy did pretty good with her long chemo round. We went to the park on Saturday(Dr's orders-he dosn't agree with the more restricted enviroment theory I have-but he also doesn't sit up with her for days on end while she cries and cries and sweats and gets sick and rashy from a high fever) and on Sunday she really wanted to go to church with her Great Grandma which fortunately for us only lives 2 blocks from the hospital and goes to church right across the street from the hospital so I put her in the wagon they have up at the hospital that we cruise around in-and away we went. My grandma is so funny. We met her at the far end of the block from the church and she pulled over so I could put the wagon in the trunk and she could give us a ride the rest of the block to the church! God I had to laugh. I assured her I could manage the distance and reminded her that I really need some exercise too! Maddy really enjoyed church, she sang her own songs and drew pictures fo everyone in the pew behind us. Needless to say she was a huge hit. The majority of the congregation were grandparents themselves so were thrilled with her. We stayed and had orange juice with everyone and then walked over to great grandmas for lunch. Once again we were offered a ride the 2 blocks to Great Grandmas house but had to be firm and we walked(well I walked and pulled the wagon while our little princess rode!) and enjoyed the gorgeous day we were having. When we were going back to the hospital Maddy said,"We are going back to the doctors now aren't we momma?" "Yes," I said,"we are." She said,"Cuz I'm going to have my chemo right momma, cuz the chemo will shrink my tumor and then I can have my surgery and they will take my tumor out-right momma." I am crying now and had to turn away from her. I said,"Why yes -you are right Maddy." I had never heard her speak so clearly or use the words chemo,tumor,ect, before. She then said,"But then I will have to have more chemo to make sure the tumor doesn't come back, right momma?-Cuz tumors are bad and we don't want it to come back. But then I will be o.k. momma." The amount she comprehends amazes me. The rest of the walk was through a haze of tears as my heart broke that she has to go through all this and yet just amazed at how much she understands and how calm she said everything. Her voice was not searching my answers for the trueth, she was more just telling me. So I am trying to take a que from her that she will be o.k. She had a rough day on Monday and after having company she threw up and her feeding tube came out. With her counts already dropping and being on a steroid to try and combat the peeling of her hands and feet-her infection risk was quite high and we debated for a long time whether we should put the tube back in right away and risk having her throw it up again or wait until the am and risk her counts dropping more and getting an infection from the capillaries bursting in her nose as the tube is inserted. We eventually decided to wait until the morning and Maddy endured it beautifully Donny said. I was at home with Donovan and his awful cough he got from the smoke at Rollag and just beside myself with worry. She has made it a whole 2 days at home with no fever yet, but we are not going anywhere and not letting anyone in at all to try to avoid just one fever. I'm not going to hold my breathe though. Her hands turned purple today and she is losing her color so I suspect maybe tommorrow her temp will go up. I don't know. The side effects are so awful for her, and yet she is so positive and happy most of the time. I am very thankful that on her long chemo cycle we are allowed to unhook from her iv and leave for a couple hours each day her counts are good. Without that this would be all that more difficult. She can't have any visitors when she is in for a fever, and she is usually to crabby on her short cycle,and on her long cycle we are out in the am before they start her chemo at 2pm and once her chemo starts it's not good to have visitors as she is usually nauseated and even the smallest amount of excitement can make her tummy revolt. She has had that happen a few times but this was the first time the tube came up. Sometimes even just too many nurses coming in to say hi to her and she throws up. That makes it hard on her as she starts to feel alittle isolated but she will even tell them to go out when she starts feeling sick to her stomach! On this chemo protocal it doesn't give her more than a day or 2 every 2 weeks to be a kid but we are told it is the best way to go for the best prognosis so we will do what ever it takes. One year is worth a life time and Maddy agrees with that. I am trying real hard to be optomistic. That's all I can say is I am trying. I am really nervous about her surgery coming up in October-probably on the 13th-not sure yet of the date. I try not to dwell on it and I guess I am most concerned about her only having 2 weeks to try to heal before she starts up the chemo again. She will have 8 more rounds after surgery and no break in there anywhere. I have so much respect for people who have endured or are enduring the horrors of chemo. It is literally poison and I am forever amazed that people can survive this treatment. I am humbled by the power of the human spirit to survive. My hat is off to all who have endured-and cured or not you are all heroes to me. I pray to god I do not ever have to experience cancer any more personally than I am having to now in my life. I don't know if I could endure it myself. But I tell you-I have one hell of kid. God bless her-she is my little hero. And go figure - she wants to be wonder woman for Halloween!

Saturday, August 30, 2003 0:48 AM CDT

Well we are back up at Meritcare for chemo. The trip to Mayo was long and scary. When we were there the first time all the dr's were very upbeat and energetically positive that we were going to cure her. This time they were all more subdued and conservative and not at all what I needed. They think the thing with Maddy's hands and feet turning purple and the skin peeling off is just a reaction to the chemo and so she will be given a steriod along with her chemo to help with it. When she got up today the palms of her hands were bleeding from the skin peeling off. They aren't purple today but she is starting chemo today so who knows. Everything now is to wait for her surgery in October and see if the tissue they remove from around the tumor is negative for cancer cells and if it is then we can be more optomistic. Right now I need someone to tell me that of course she is going to be cured and not have a reaccurance-no doubts. Right now I feel like breaking down all day long. I can't stop myself from the what if's. I am so scared all the time. I want to cry everytime I look at her. It is hard enough dealing with the fact that she has cancer and how awful the treatment is, but all the side effects are really getting to me. Whatching her hands and feet turn purple, get hard like the skin on your heels and then peel off in bloody clumps is really hard. Whatching all the color drain from her body as the chemo starts going into her, seeing the black sores fill her mouth and the dark rings around her eyes grow. She is getting so sensitive to everything. It seems she is always getting a rash from something. She sweats so heavily when she has a temp that her tape that holds her port access in keeps peeling off so she had to be reaccessed 4 times last weekend and got a bloody scabby rash from the tape. They had to keep redoing the tape on her face so she got a scab there to. I want to be as aggressive as possible with this and just kill the tumor fast, but I also want to run away with her and let her be a little girl. No worries and cancer free. We went to my sisters house on Thursday to pick up Donovan and stay the night but I just had to get as far away from Mayo as I could get and all the new fears. I felt bad for not staying like we'd planned and I really hope my sister understands why we had to leave. I just felt like I was crawling out of my skin and needed to be home were I feel just a tiny bit safe. We left about 9pm and got in around 3am. I started to feel better when I got home. We all did. I just don't know how I am going to make it through this ordeal all intact. To many things are to complicated. I run such a gamat of emotions in even an hour that I'm just exhausted but I can't shut my brain off. I can't sleep at night. I think I hear her all the time. On hyper alert all the time. It's so hard to keep a family going when you are never actually together on a consistant basis. It's hard on Donny and I to never see each other and when we do get to there is always so much to do and so much stress. We are going to get medicaid and food stamps but that is all we qualify for. As the cc bills go up as we try to live the more I feel like we are sinking. I know everyone keeps saying the most important thing is Maddy getting better but that doesn't mean I get a get out of jail free card on my bills. I still have to pay or don't pay and then pay the cosequences. Life should not be this hard. I just don't have anything left in me to be positive for. I feel like I am letting my family down but I am just losing my strength. I don't know what to do anymore. I don't handle sitting and waiting very well. I'm afraid to have hope because everytime something starts going good for us something twice as bad happens. I'm afraid to plan for the future. Did you know that 1 cancer tumor releases millions of cancer cells into the body everyday-all with the capabilities of becoming a new tumor. I do now.

Monday, August 25, 2003 7:00 PM CDT

Well I am packing for our trip down to Rochester tommorrow. We are going to stay at my sisters down south about 2 hours and drive up to Mayo in the am on Wednesday. Donovan is slowely getting better. He is still not eating much but is a little spunkier. He had his first day of school today and he did really well. I went and picked him up after school and he wanted me to follow the bus home so he could ride the bus. If I hadn't have had errands to run I just might have! Well Maddy is going to be released tommorrow but they are going to do a test in the morning to check her circulation. Her hands started to turn purple on Friday and now her toes are turning purple. Since Donny's dad has congestive heart failure they are going to do a blood test to see if she is developing that to. I am about at my wits end. It's hard enough to deal with the cancer part alone but all of this other stuff is what can put a person over the edge. I want to take Maddy and run away. I can't be around babies right now without tearing up. Hell I start crying over the dumbest things lately. I found a Barbie shoe in my pocket today and about lost it. I'm crying right now. I'm so scared all the time. I miss my baby, so happy and full of life. Now she is sick and turning purple! We give her medicine to kill the tumor and try to save her life and it could be destroying her heart. I don't know why my baby has to suffer so much. Why her God-Why her. She is so tiny and defenseless. None of this makes any sense. I just feel like my heart is being torn out of me. I want to be the one in the hospital-not her. I want her to be just a normal healthy little girl again. Not lying in a hospital having her body destroyed. I want to see her and Alexis in their summer dresses and their blonde hair blowing in the wind while they pick dandelions for me. I want Austin and Donovan driving around the yard in Donovans red jeep asking the girls if they want a lift. I want to be able to get the monsters out of my head at night so I can actually sleep. I want to be in the same room with my family when we sit down at a meal. Not me or Donny at the hospital with Maddy while the other one is 60 miles away with Donovan. God I don't know how to keep doing this. I want to scream and to cry and to run away and to turn back the the clocks and erase the day we found her lump. I warned you this could get raw. I make no apologies. This is how I feel.

Friday, August 22, 2003 7:40 PM CDT

No mother should have to see their children so sick. Donny brought Donovan home last night and he was still having diareah. Around midnight we were in the bathroom with him and he started vomitting. He was so exhausted he colapsed on the floor so I had to hold him over the toilet as he heaved. I don't know how I didn't break down right then. He has lost a lot of weight this week and now looks like Maddy did a month ago. Emaciated and guant. Maddy has been up and down with her temp since yesterday. Just below the degree were we have to call and bring her in. We are supposed to call at 100.4 and bring her in at 101.5. Her temp has been about 100.1. It will go down to 98.8 and then up to 100.2 and then down to 98.2. The waiting and wondering can be so draining. Donovan has seemed to have turned the corner last night and has kept his food and drink in on both ends today. He does not have giardia. We will have to wait until Monday for the rest of the test results but that was good news. He probably has salmon Ella. Which the antibiotic he is on will take care of that. Hopefully he will be able to start school on Monday and will recover from this. Rollag is next weekend and Donovan loves Rollag more than anything else. He literally has been talking about it since he came home from it last year. My dad and his brother,Donovan and Donny have been going the last 3 years and lets pray that everything goes alright with Maddy and that Donovan gets better so he can go. It really means alot to him. Maddy will be in for chemo but I worry she will get sick while we are down at Mayo and be stuck there for 2 weeks. I can't stand the uncertainty of my life anymore. I'm afraid to look to the future with any kind of hope, afraid to be happy,afraid of losing my baby, afraid of making a mistake with her care, of not knowing enough and missing something. I can't take anything for granted. I used to never think about a trip to the store, or having enough time to wash clothes or cook a meal. I can't put food in the crock pot because I never know if I am going to be home when the food is done-If Maddy gets a temp we have to leave now. I can't start anything around the house, make any plans for the week or even the day. I feel very insecure all the time, on the edge on hyper alert. I think by next spring I might be in a rubber room! Well I need to go take Maddy's temp again and Donovan actually wants to eat so cross your fingers he can keep it down. The evenings have been his worst time so lets pray!

Thursday, August 21, 2003 6:19 PM CDT

Maddy came home late Sunday night and has had a very good week. She was in and her counts are dropping so I am crossing my fingers she can make it through without a fever. She had lots of visitors this weekend at the hospital. My cousin was married on Saturday and so there was family in town that we have not seen in years that came up to the hospital to see us. My cousin Rusty and his wife have twin daughters in elementary school that had made Maddy a fleece blanket that is her favorite blanket now and she was so thrilled to get to meet the girls that made it for her. She is telling everyone about them and how nice they are. Thank you girls. The company was such a nice break. And seeing everyone was uplifting for me. I unfortunately was emailed statstics for ewings survival and they devastated me. I had never looked up any statistics because I just never wanted to know. Unfortunately someone else inadvertantly sent me updated statistics today that were worse than the first. I am so petrified all the time that we won't be able to get this monster out of her body. And people keep telling me not to think of it and stay positive but it is damn near impossible not to think of the worst. She is my life and I am so afraid of losing her.I know life will go on if she doesn't make it but I don't know if my soul will survive-my body will but that may be all. Donovan is back up at the hospital tonight. The 3 time this week. He started to throw up and have diareah on Sunday am and has not stopped yet. Donny just called and the dr. gave him an antibiotic now to treat him for salmanella and/or giardia. We don't know yet which one it is-the test results won't be back for a few days. We don't know how he got either one. He unfortunately is going to miss his very first day of kindergarten tommorrow. It would really suck to end up having both of my kids up at the hospital this weekend on different floors. Maddy finally laid down for a short nap so I have a minute(just barely) to update her journal. She has really been feeling good this last week and acting a little more like her old self but she is still very clingy. She is never more than a few feet away from me at any given moment. I don't get anything at all done anymore. Oh well I hear her fussing(see I told you only a minute!)and the pitter patter of her little feet coming to find me-now we are crying so I gotta go. Danielle thanks for bringing Trevor out seeing us. We miss you alot and love you both very much! Maddy wants you to call her cuz you can dance too! Also she goes to Rochester to the Mayo Hospital on the 26-her appts. are for the 27-we will be going right from Mayo to Meritcare to start her 6 day cycle of chem on the 29-to be evaluated and to discuss her amputation in October of her 3 ribs and the possible radiation therapy after chemo. Will definately let everyone know how that all turns out.

Friday, August 15, 2003 11:18 PM CDT

She is so incredible!She has been in the best mood the last few days. She started chemo today and has been eating and playing, laughing. She went up and down the halls today passing out suckers to all the nurses and patients. She really brightened up some peoples day. I pushed her IV stand with her chemo pumping in and away we went! She ate a donut today(krispy kreme of course!) and almost a whole bag of funyuns of all things. She has been cooperating with everyone today with her vitals. A really good day. Now tomorrow could be a totally different story. But I'll take a good day anyday! She finally fell asleep now 2 hours after having ativan. Ativan usually will knock a person out within about a half an hour. Go figure that Maddy would have to be different. Make a wish was up here today and told Maddy that they are going to send her to Walt Disney world in Florida to see Sleeping Beauty in person! I can't believe all they are going to do. And all 4 of us get to go for 7 days! It is going to be so incredible for everyone. She is so excited. I don't think she will get to go until her chemo is done with but it will be well worth the wait. On one of her unscheduled days we are going to go down to discovery cove and go swim with the dolphins!(That is moms secret wish!-Other than Maddy coming through this OK-today is a day to dream of happy thoughts and wishes because she was so much like her self right now) Mom has hope for the future and for right now is cherishing this day. I even got to leave her with the nurses to go develop the film in her camera-that was a huge step for her. Donovan is at a sleep over and Donny is at home swearing at the house. He went to paint the ceiling in the upstairs hallway and discovered that there is mold and mildew underneath all the wallpaper in that hallway and going up the stairs. Soooooo he has to bleach all the walls really well,scrub the mold off,and then put a couple of coats of paint sealer/killer (kilz) on all before Maddy gets home Monday am. So I will be up here most of the weekend with her as I am very allergic to mold,bleach and kilz and haven't had an allergy shot since Maddy was diagnosed. She is in room 731-which is alot bigger than her normal room-and will be here until Monday as long as everything goes well. We also have set up a benefit account for her at Goose River Bank in Mayville, C/O Maddison Williams. The funds from her benefit and what ever else is donated to help us will go into this account and will be over seen by our pastor. Well I had better get some rest(not necessarily sleep!) before she wakes up and starts peeing out all these fluids she gets. Did you know that when you are receiving chemo you need to empty your bladder atleast every 2 hours so that the chemo doesn't destroy it?! I do now!

Thursday, August 14, 2003 8:36 PM CDT

Well lets see what's happened this week. Maddy had to be catheterized on Monday to see if she had a bladder infection-which never produced any results becuase she was already on an antibiotic so not sure what the purpose of that was. We got to go home on Monday and mom put her foot down about her spitting on me and everything else 24-7. So she went to dad and he felt bad-told mom she was mean and became her walking spit rag. Well after a few hours dad wised up and since mom can put up with crying for hours on end-literally-she gave up and started to swallow it! She also started eating a bite of food here and there. Not more than a few bites a day but it's a start. We went in on Wednesday for a gamaglobulin treatment to raise her bodies anti-bodies(not her white blood cells). Her counts were all up except her platelet count was 19 and it should be 100 so we were sent home Wednesday late afternoon. She really has perked up the last few days.She has been playing, talking,laughing,fighting with Donovan. I think we all needed it as much as she did. It is going to be hard to take her in tomorrow morning for her blood counts to see if we can start chemo. This next round is the really tough one. Although the other round seems worse sometimes because it is so much longer. 6 days vs 3 days. She is starting to warm up to some of the nurses and has 2 inpaticular that she likes-Katie and Karen. She also likes Dr.Kobrinsky and insisted on bringing him a sucker the other day. She brought lots of suckers and really enjoyed passing them out to everyone she say. So we went and bought more suckers so she can do it again. She has a big Tupperware container with a handle she put them all in and wants to carry it around the hospital with her. She is still sweet. Crabby but sweet. As I am typing here she is describing to me the "sprinkly" pink and purple dress she wants Daddy to buy her for her birthday coming up (in half a year!). She wants a Barbie party at home with all her family and friends-I told her we would definitely need a bigger house to fit all the people that love her in it fot her party! That made her smile and she said " oh you silly momma!" She is certainally the light of my life and went that light dims my world goes black. I have been really tired this week. My house has gone to pot-and of course that is when the pastor comes to visit! I know he doesn't care but it is embarrassing none the less. I read some statistics this week (by accident) and it scared me. Thank god everyone in my life is smart enough not to have told me them in the very beginning because I'm not sure I could have held it together at all. Maddy has I think the best chance of beating this but I still will worry forever about her relapsing and then her odds of survival plumett. I try and stay positive but every once in awile a bad thought will sneek up on me when I least expect it and I'm in tears again. She keeps asking me if she is going to grow up. I tell her of course. And then she asks me if she is going to be a momma like me someday. I tell her of course. And the whole time my heart is breaking. All she wants to be is a momma just like me(although I pray to god she will be a much slimmer version of me!) And I don't want anything taking that away from her. It doesn't matter to me anymore if she can't ever give birth to a baby-I will help her adopt although it is a loss and I know from my own infertility problems how it can effect your life-I just want her to have the chance. Everyone keeps saying don't worry and enjoy the now but you will never understand how much easier that is said than done.I am trying. A good friend had given me a medallion necklace with praying hands on the front and the serenity prayer engraved on the back and I say that prayer over and over again. I hope if she reads this she will know how much that necklace has meant to me over the last few years and especially now.Thank you for that and being such a good friend to me for over 20 years. Even when we don't talk often you are in my prayers and thoughts. I try to live my life by that prayer. I have also come to recognize fully the benefit of being a volunteer over the years. Like Adopt-A-Pet that we fostered for(our first foster kids!)and adopted 2 of our dogs from have been an absolute life savers by donating food to help us feed our managerie of furry kids and Liz has been such a wonderful and thoughtful friend. We are also so very humbled by the love and support that we receive continously from our church-especially our pastors. Pastor Jeff has touched our lives and our hearts deeply on more than one occasion, and pastor Janna and her family have really been there with support and anticipated our needs and provided for us. I really believe Donny and I were meant to end up here in this community and truelly feel at home here. I am not very good at expressing gratitude so I hope everyone knows that I really take to heart and appretiate even the smallest act of kindness shown to me and my family.
Donovan will be starting kindergarten on the 22nd and I am positive I am more nervous than he is. I think the only thing he lacks is shoes. So I will go and pick a pair up this week. I hope he adjusts to school well and warms up to the kids, he is really quite a loner around new kids. He does have a friend Julie in his class so hopefully she can help him make friends. Well it's bed time for the kids and Maddy needs to brush(did you know chemo destroys your teeth?!) I tell ya I learn something new everyday-Thank God!

Sunday, August 10, 2003 9:27 PM CDT

Maddy is still pretty up and down with her temp. She had a blood transfusion yesterday,lots of lab work, antibiotics,fluid, you name it. She is pretty fussy but let Grandma stay with her for awhile this afternoon while Donny went over to Great grandma Middlesteads for a nap. I can't tell you how wonderful it is to have my grandma only 2 blocks from the hospital so on our good days we can walk over there for a break with her or run over for a shower and a sandwich. Edna(great grandma) has come up and sat with Maddy when we have needed a break-although Maddy is pretty fussy for her and it makes her feel bad-she comes and helps anyway. My mom was there with her today and she was ok with that and that makes life alot easier. I came home last night to do laundry and feed the dogs and ended up ripping the carpet up out of the hallway upstairs and scrapping glue and bleaching floors until 5am. A friend of mine had come over and helped me until about 3am when she finally decided I was nuts and went home to take a nap before she had to go to work. I haven't been going to bed before 3-4 am all this last week. I just can't unwind at all,and when I get home there is always so much to do while she is not in the house so we don't have to worry about stirring up alot of dust and making her sick. Last night I did 4 loads of laundry, cleaned out the 2 closets in my entryway, bleached all the floors,vacuumed the house,tore out carpet,pulled out a million staples out of the floor I swear,scrapped old glue and paint of off of the top stair,hauled out the garbage,cleaned out the fridge,washed the dishes,fed all the animals,folded and put away the laundry, moved the furniture that was left in our downstairs bedroom out so I could clean the carpets today,cleaned the bathroom, packed more clothes for everyone for the week,organized the bills,and made out my to do list for Monday. Then I was finally wore out enough to go to bed. Mind you I didn't get home last night until 9pm and went to bed at 5:30am. It's unreal how much you can get done with nervous energy! Donovan is staying over at Jason and Karla tonight because it will be so late when they get back from camping they would prefer not to make an extra stop here so I will go get him in the am. Jason said he had fun camping but was a loner most of the time. When he starts school in a few weeks I am going to have to get him in to see the school counselor so he can deal with his feelings and hopefully avoid him becoming withdrawn and/or depressed. All of this is so hard on him, I know it but it I can only do so much for him, so I will find the help he needs to get through this. I havr really missed him this week-enjoyed the quiet!-but missed him non the less. Now tommorrow I go back to the hospital to be with Maddy and Donny will come home with Donovan. I really don't think Maddy will get to come home at all before her chemo starts again on Monday so it will be Saturday at the earliest that she gets to come home. We will count on her spiking a temp about Tuesday/Wednesday and back in for probably 5 days. She has an appt in Mayo to go over her surgery plans so we can only hope she is well enough to travel by the 26th. Donovan starts school on the 22nd and have a friend of mine who can take him after school if something comes and Jason and Karla are always willing to help if there is an emergency. It is really great having my family so close around me. My parents have really done alot of work on our house to try and get things fixed up for Maddy-My dad has spent days sweating to death on our roof in this hot,humid weather putting the new roof on-Jason has come over and helped when he could with it to-and my mom has spent countless hours cleaning the house,doing laundry, and watching Donovan. Thank god for them. I can only say thank you so much and it will never truelly express my gratitude to them. Mom-Dad-thank you from the bottom of my heart and soul for all that you have done for Donny and I in the past, now and for all I know you will do in the future. I never expect you to do what you have done and am so very blessed to have you as parents. And to all our family,freinds,and our church-thank you again for your continued support and love for us-And Margaret-the next time I tell you to come over and have a beer with me-remember to bring a screwdriver and pliers!!!!!!!

Saturday, August 9, 2003 0:24 AM CDT

Well we are backup at the hospital with a temp.She is so crabby.She is so indifferent with everyone. Her personality change is hard to deal with.She used to be so bubbly and happy, now she just fusses over everything. We ran into one of our pastors up at the hospital tonight and she reminded us that atleast she is crabby and fighting and not giving up. She is right about that.Our little Angel does have fight in her-I just wish she didn't chose to fight with everyone! It was supposed to be Donny's night to stay up with her-I was "on" last night-but I was just to tired to drive home and so was Donny, so he went to my grandmas and I stayed with Maddy. Donovan went with Jason and Karla camping this weekend down by Yankton,SD. Donovan has really been having a tough time with all of this-that's only to be expected, but somedays he can really be a handful and a half. He really is getting the short end of the stick for the next year. He knows Maddy is sick but doesn't understand just how serious it is. We try and have special time with him everyday but it's just never enough. We also are having such a hard time adjusting to life with cancer. We can't make any plans to do anything because Maddy could get a temp -and does often-and we have to take her in for days of antibiotics and IV fluids. We were also having a hard time adjusting to the differences between the two hospitals involved in Maddy's treatment. We didn't know what to expect(and still don't know enough),didn't know how to communicate,or ask questions the most productive way. It's hard to be politically correct and on the ball when you can't think straight and are so numb from shock. I feel for the moment anyway that Donny and I are starting to accept the uncertainty of our life. Not necessarily coping well with,but starting to accept. We are realizing a pattern in her and won't be so surprised at the side effects with the next rounds. I'm feeling this way today anyway-I can't guarantee anything tomorrow! But for now my little angel is sleeping and seeing how it is 2am I should probably do the same.

Thursday, August 7, 2003 11:28 PM CDT

It's me again. Talk about a rollercoater you live on when you live with cancer. Maddy's white blood cell count(your infection fighters)are down to almost nothing. All day it's checking her temp and praying she doesn't hit 101.5 because then we have to go back to the hospital for IV antibiotics for at least 48 hours-until her fever breaks and her white blood cell count goes back up and seeing as how she is scheduled to start chemo again on wednesday if we go in now we won't get to come back home. Her temp went up to 100.4 -which ment I had to call the hospital and let them know it's going up. They told me to give her some tylenol and wait to see if it still went up or if she would stabilize or go down. Thank god it went down to 98.5 but I will be up all night checking her so if she spikes way up I'm ready to take her in. I was actually having an ok day today despite Maddy's increasing irritability. She wants me to hold her 24-7 and if I put her down for anything she bawls and shakes and makes you feel like the worst mother in the world for even considering going to the bathroom. The guilt is just about as overwhelming as the the feeling of utter helplessness. Her personality is changing so much and there is nothing I can do. The more I try to help her the more irritable she becomes, but then if I don't do anything for her she cries and cries. I cannot win for anything. She is really upset about losing all of her hair. Nothing we say makes her feel any better. She asked Donny last night if it was going to hurt when her hair grew back. She associates everything with pain now. Eating,going to the bathroom,breathing,walking,talking,everything. All of those things hurt her now on and off, depending on whats going on. Her chest will hurt and breathing is uncomfortable for her after she will have a procedure that she has to be put under for because they put a tube down her throat to breathe for her. The chemo makes her whole body hurt. Her nose and throat hurt because of the feeding tube. Her tummy hurts from not eating and the cancer drugs. She is getting really picky about everything now to from the clothes she will wear to the toys she touch to the sheets on her bed. It gets so frustrating I could scream-like she will be getting dressed for bed-standing there in front of you shivering-but refusing to put on any of the pj's she has. She will start crying ,and then we snap at her and then she screams and before she's dressed for bed we are all bawling. If we scold her we feel so horrible. We know she is fighting for her life and so sick, but god I just don't know what to do when she makes everything into a battle. We try not to make an issue out of most anything but we do have to have her change her clothes because she sluffs off dead chemo cells in her skin so you don't want it on her skin for long periods of time and hand washing and teeth brushing are our battles we do fight all day everyday. Chemo destroys your teeth and if she doesn't wash throughout the day she will give her self an infection just from the normal bacteria on her skin. I feel like I'm learning encyclopedia loads a day. If I get a minute of unattached time at home while she's awake I have to constantly be wiping things down with clorox wipes or bleach. Usually I wait until she has gone to bed at 10pm to start cleaning and I will be up for hours. Yet with all the sanitizing my house has gotten so cluttered. Somedays I want to throw out everything I own so there would be less to clean. Well speaking of cleaning my luxury time of getting to journal is over and I need to clean my floors,swap out the laundry(I have to change her bedding everyday because of how much she sweats at night)bleach the bathroom,lysol the door knobs, try and sort out my bills and nail,check her temp,check her pump,change her pillow as she drools so much now it gets soaked and if her skin sits in a puddle of drool it will break down which will lead to more infections and more hospital time. She already has a dry sore spot on her chin from wiping the drool all the time so I want to make sure that doesn't get any worse.God I'm tired.

Wednesday, August 6, 2003 2:09 AM CDT

This is Holly again-I just spent 30 minutes writing an entry and then the computer had an error and I lost it all. So here goes again.
I want to start with a disclaimer to my family and friends. Sometimes when journaling I may be overcome by raw emotion and do not want to be judged for the feelings I have or the decisions I will have to make in the times to come. You do not get a cancer book of etiquette upon diagnosis. We are just trying to survive moment to moment without getting lost. Everything in our lives has shifted purpose and meaning. We have no control over the journey we are on or the feelings and emotions that come with this trip. I am just trying to hold on to my reason for breathing, for getting up in the morning, for being the best that I can be and the reason I am who I am-My Maddison Mae. There are going to be moments were my human side is going to leak out from under my supermom image and there I am going to be-human and petrified. I will do my best to keep up with this journal and give all the wonderful people in our lives a link to this child we all love so much and hold so dear.
It is 2:30 in the am and I need to go check on Maddy's feeding. She threw up alot today and we are starting to see the accumulative effects of the chemo. Her hair is almost all gone,her eyes are sunken and dark,her skin has a leathery appereance and she is so thin and frail. She will drink Sprite on occasion but consumes nothing else. Her only food is the pediasure we give her by her tube. She doesn't talk very much at all anymore and complains of leg pain often so limits her movement. She will have a good day or two followed by a week or more of bad days. She is scared and sad most of the time and it breaks your heart to see her this way.It is like her spirit has been broken and I do not know how to fix it for her. I would give my life to spare her this pain and fear. There is no sense to this and sometimes I feel as if I am going crazy trying to figure out a way to cope. We have found great comfort in the amazing generosity and out pouring of love we have received from our families,friends and even complete strangers. I will be amazed for the rest of my life at just how many people love Maddy and our family. I will hopefully be able to thank everyone of you individually for all you have done but for now will say it here. Thank you for taking the time to express to us your love and concerns for Maddy and our family, for reaching out and enriching our lives. For the gifts, the acts of kindness-big and small. Thank you for your prayers, your compassion, your understanding. We have never felt so fortunate to apart of a family and a community that cares so much and helps so greatly. Thank you again. We love you all.

Sunday, August 3, 2003 1:37 PM CDT

Today the website for Maddy was created. She has been going through some tough times but we are praying for this little three and a half year old to stay strong. Here is an update on what has happened so far.

The week of July 10th, it was discovered that Maddy had a goose egg sized bump on the left side of her ribs. On July 12, after a few doctor visits and an MRI test, the doctor had discovered a tumor in her chest the size of a melon. Her left lung was located in her left shoulder and it was the size of a small ball. Her right lung, her trachea, heart and stomach were located in her right armpit. Maddison was diagnosed with cancer. She was rushed to Rochester, MN to the Mayo Hospital. More tests were done to confirm the first diagnosis and the cancer that Maddy has is called Ewing Sarcoma. Ewing Sarcoma is a cancer found in children, usually males between ages of 11 and 15. So for a three and a half year old girl to have it is exceptionally rare.

While in Rochester, a biopsy was done and a porta-cath was inserted on Monday the 14th to administer the chemotherapy. Her chemotherapy started at 1:00 a.m. on Thursday the 17th and was administered continuously thru Saturday at 1:00am. Maddy was sent home later on Saturday the19th of July.

We went to the Roger Maris Cancer Center in Fargo, ND on Wednesday, the 23rd for her first appt. to get her labs done. Her blood counts were dropping and her eating was a big concern. She was loosing weight. On the 24th, Maddy spiked a temp of 103.5 degrees and was hospitalized. Maddy stayed in the hospital for 5 days to receive IV antibiotics and her temperature broke on the 5th day. Her blood counts came up again. On the 27th, they began feeding her through a feeding tube since she dropped down to 23 lbs.

When they had an X-ray done, they discovered that the porta-cath had slipped and was pointed to the base of her brain. The porta-cath had to be replaced on Wednesday, July 30th. Chemotherapy was started again for 5 days. Hopefully, Maddy can go home from the hospital tomorrow (August 4th).

The plan for Maddy is for her to continue chemotherapy until she can have surgery. We meet with the doctors in Rochester on August 27th. Maddy may need another round of chemo in Rochester and we will discuss surgery. Right now surgery is scheduled for the first week in October at Mayo in Rochester, MN. After surgery, Maddy will need chemotherapy for 6-11 months and radiation as well.

Please keep Maddison in your prayers and feel free to sign the guest book! Thank you for your support.

Sunday, August 3, 2003 1:37 PM CDT

Sunday, August 3, 2003 1:21 PM CDT

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