Journal History

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Friday, December 28, 2007 7:49 PM CST

Wednesday, December 19, 2007 10:45 PM CST

Lance tested positive for strep throat. Blake was vomiting last week and this week Lance has strep. Pray that nobody gets anything next week!!! Strep throat ... ick.

Was rummaging through some things this evening and I ran across her Christmas stocking. My entire body lurched on the inside. I looked at it. I touched it. I picked it up and ran my hand across it. My insides were on a rollarcoaster ride. I quickly tucked it inside a box knowing that by doing that I will run across it again sometime. I can't bear to get rid of it yet. Not yet. Kinda like her room. Untouched.

I found that by going through my mother's stuff so soon after she died that I was quite emotionally attached to everything. I now look at a lot of the stuff that meant so much to me then and I wonder why I ever thought that. Now that we're 2 1/2 years from her death, it just doesn't have the same effect on me as it did in the months after she died. I decided to wait with Rachel's things. I'm much too emotionally attached to absolutely everything that was hers. By waiting, I can emotionally detach from her clothes and toys and take the time to think about it all and realise that it's okay to part with it in it's time. I'm putting no limits on myself. I don't care if her room stays untouched for a couple of years. I obviously don't need the room ... it was hers and we didn't have any big plans for it. So it can sit there in all it's fullness, yet so very, very empty. It's still in there. It's quiet. It's very pink. Sometimes it's very easy to walk in there and be surrounded by her things. Some days it's very difficult. It's her room. It will always be her room.

Lance wrote a letter to Rachel in school this past week. He read it to me today. That was tough to listen to. It's so hard to internalize how much the boys miss her. I don't want them to hurt as I do, yet how can they not? They've lost one of their closest friends. They've lost a playmate. They've lost someone they love dearly. They've lost a part of their lives. They, too, have lost a part of themselves. I ache for them. I can't give that back to them. We just want to protect our children, yet there is so much that we can't protect them from. Illness, death, the sadness in the world ... none of it can we take away for them. Shield them from it, I guess, but does that do them any favors? I don't think so. I'm so thankful that we never shielded our kids from death. I'm so glad that the first person they saw up close in a coffin wasn't someone they loved dearly. I'm glad we took them to visitations and funerals of relatives that they didn't know well so that when their own grandparents were in that state that it wasn't something new. And then it was their sister ... No, I'm glad we have dealt with it the way we have.

As we turn the corner into Christmas, death is certainly in the forefront of our minds. We can't help but notice the glaring hole that follows us. No matter where we go, it's there. An empty hole. An excrutiating hole. An exasperating hole. A hole in our hearts. A hole in our family. A hole in our lives. It's quite blatantly there. It's hard to say the "merry" in Merry Christmas. We don't feel very merry. It's hard to say the "happy" in Happy New Year. We don't feel very happy. It's hard to acknowledge that it's "this time of year" again. We don't want it to be. Each day seems to take us farther and farther away from her, yet the pain hasn't changed. What the hell is merry or new about that? No, this just isn't very fun at all.

Yet, even amongst the pain of it all, there is excitement building as we await to do the "Christmas plans". The boys can hardly contain themselves. It is a weird mix. Missing her and being excited about the new tradition we could be starting. We'll see how it all works out.

May you have a blessed Christmas. May you find quiet time to reflect on Jesus, to talk with Him, to thank Him for His sacrifice and His gift to us. That reminds me of something I heard on the radio recently. I guess there's a film out this Christmas season entitled "What Would Jesus Buy?" I don't know anything about it, but it sure makes you think, doesn't it. I don't know, what WOULD Jesus buy?? I'm kinda thinking absolutely nothing. I don't think there's anything more He could give us ... is there?

Specific Prayers:
~For the health of our family during this Christmas season.
~For our sanity, our safety, and our spirituality as we head into this Christmas and New Year season.
~That we be able to make wonderful new memories as a family this Christmas even though there is a glaring hole in it.

CANCER SUCKS!!!!!

Monday, December 17, 2007 7:59 AM CST

The Christmas Program. There it was in all of it's childhood glory. Kids in the confirmation program were asked to narrate, therefore Blake was a part of the children's program. Lance, of course, was in it and had his lines memorized. Blake spoke clearly and was able to be heard throughout the church. Lance did the same and he even conquered playing his tone chime and singing at the same time. Yet, there was something missing. There was definitely a hole. A hole in the second grade.

As those second graders stood and sang their song, I knew that she would've been the shortest one probably standing in the middle. I envisioned her there. I wondered what her Christmas outfit would've been. Then I wondered if we'd even have been able to be there. Would she have been sick? Would she have been in the hospital? Would she have had blond hair shining in the light or a bald head reflecting the glare? Either way, it didn't matter. She wasn't there. She wasn't at home with Mark. She wasn't at the hospital with me. No, Mark was sitting with extended family in the congregation and heck, I was in the front row helping with the kids because she WASN'T there. She isn't here. She isn't anywhere anymore. Not in the way we want her, at least.

A whispered voice says, "Mom, that's Rachel's mom." I turn and look and see a little boy that I don't even know holding his mother's hand while walking away from school. I smile and wave at him. The smile that is returned lights up his entire face and he just beams as he waves so hard at me that I think his arm is going to go sailing right off his body. A warmness fills me. Yes, I am Rachel's mom. I will forever be Rachel's mom. I hope I am forever known as Rachel's mom by those children. "Uh ...," a little girl shyly stutters at me at church, "aren't you, uh ...., aren't you, uh ...., (long pause as I wait for "Aren't you Rachel's mom? to come out), aren't you Lance's mom?" I giggle as I realise the reasoning for her hesitation--she was trying to come up with Lance's name rather than using Rachel's. "Yes, I AM Lance's mom!" She smiled from ear-to-ear (probably more at herself for remembering his name!) and then she walked back into her Sunday school room. Yes, I am Blake's mom. Yes, I am Lance's mom. Yes, I am Rachel's mom. I wonder how long it will be before people start to forget that I am Rachel's mom. As the years go by, will her memory fade? Obviously not to her family, but to others. As the years go on we will meet people who never had the priviledge of knowing Rachel. They will never have known us as a family of five. They will not know the huge hole we carry with us. As the years go on, I'm sure the whispered, "That's Rachel's mom" ... those three words I have come to hear every time I go to school over the past couple of years ... will no longer echo through the hallways. No longer will the caring of these small children for another child and her mother be there. As they grow, I hope they will always carry a part of Rachel with them. When they have their own children I hope they remember how precious life is. I hope they remember as they grow that people do die. Even good people die. They can die young. And that tomorrow is not a promise .. not on this earth, anyway. There is the promise of eternal life, a life which Rachel now leads, but there is a price for that and, sadly, not everyone is willing to pay that price.

As we head into this Christmas season, it is my hope that we ponder Christ's death more than His birth. It is His death and resurrection that gives us hope. Hope for our own rebirth. Hope for our own salvation. Hope in seeing those we love and long for again. I can't imagine continuing on in this life not knowing for sure that I would ever see Rachel again. That would be too much to bear. Mark and I have said over and over and over again that the only thing that sustains us through this is knowing that we will see her again ... and not just in our dreams. We will be with her again, with Christ. That is our only hope. That is all we want for Christmas ... the gift of eternal life, which has already been given freely to us. That, and to always be remembered as "Rachel's mom" ... and Blake and Lance's, too, of course.

Specific Prayers:
~Thankfulness for Rachel's life.
~Thankfulness for the birth, and death, of Jesus Christ.
~To continue to sustain us through this season.
~For Lance's health (he has a very sore throat and fever--came down with it last night ... going to the doctor today for a strep test)

CANCER SUCKS!!!!!!

Monday, December 10, 2007 9:57 PM CST

Saturday was the sixth month anniversary of Rachel's death. I thought about it all week. I dreaded it, I begged it to come and be over with, and then on the actual day I promptly forgot about it. How's that for the truth of "the days leading up to it are worse than the actual day"? I can't believe that I didn't think about it once on Saturday. Not once. Sunday morning I was standing in front of the bathroom mirror putting my makeup on as I was getting ready for church and I stopped in mid-air. I couldn't believe it. Not that I didn't think about Rachel on Saturday because I did ... multiple times. I just didn't think about it being the sixth month anniversary. I felt horrible. I felt guilty. Then I let out a "Hrumph" and realized that the days beforehand really are the worst ... especially if I can forget the day of. Hopefully the next one will pass like that, too. Wish holidays and birthdays were like that. Fat chance on that one.

Six months. It feels like a million years. It feels like yesterday. There's just still no comprehending that she's gone. It's the strangest thing. I dreamt about her the other night ... that she was dead. That's the first time I've dreamt that. All the other dreams she's come back from the dead to join us, or to take us with her. This one was completely different. She was dead. She wasn't here at all. Not here to stay, and not here to escort anyone there. Dead. Just dead. I like the "she's come back" dreams the best!

I spent time at the hospital again this past week. My cousin's daughter, Peyton, had surgery and is in the ICU at Children's so I went and saw doctors and nurses there that I know again. Also, my girlfriend's son, Cody, is back up there and I went to visit them up on eighth floor. Saw Rachel's primary clinic nurse for the first time since the funeral. Got to take a trip with Cody and Carol down to radiation and saw all of the techs and nurses there. Stopped in at Short-stay (where we LIVED on more than one occasion) and saw MANY nurses we know. It was easier this time even if the trips to radiation and short-stay were unexpected.

We've gotten quite a bit of snow here already and I'm quite disappointed that they haven't plowed the cemetary. I'm beginning to think that a phone call needs to be made, or something. It almost feels like I'm being kept away from my daughter. Weird, I know. But, I'd like to be able to go there if I want to ... without getting stuck.

We had our Choral Festival last night at church. It was hard to see the kid's choir sing. Last year, Rachel was in that choir. This year, she wasn't. This coming Sunday is our Christmas program. Last year she was in it (casts and all) and this year she won't be. I see her class and I know that she should be there. It really stinks. It all stinks. There isn't anything about it that doesn't stink.

Specific Prayers:
~Thankfulness that the anniversary passed uneventfully for our family.
~That God continue to give us peace as we traverse through the season.

Sunday, December 2, 2007 4:34 PM CST

Thank you for all of the supportive and encouraging guestbook entries and emails concerning the one guestbook entry. All the love out there for us is certainly something we don't take lightly. Although our Little Miss Sunshine is gone, we certainly do have a lot of blessings in our lives and a lot of things to be thankful for ... you are one of them!

As far as Christmas is concerned, the only people that I'm concerned about is the four people in our family. We have to do what's best for us and not be concerned with anyone else as long as no one is getting hurt. Truthfully, I don't care if you all think we're off our rockers. :-) That's our decision to make and no one elses. What we are doing Christmas Day is something so special that we've chosen not to share it with a lot of people until after it's been experienced. Then we can share the full joy of what we did and how we spent our first Christmas without Rachel.

As far as the Christmas tree is concerned, the boys don't even have a clue that Mark and I didn't want to put it up. We know that we can't just take Christmas away and sit in the basement in the doom and gloom until it's over. We know that we still have two boys here--trust me, it's pretty hard to forget ... they leave their mark EVERYWHERE!!! We also know how powerful parental persuasion can be and would never want to interject our grief onto our kids if we can help it. After choosing our Christmas activity AS A FAMILY, the question was posed as, "Knowing that we're doing (insert secret here) on Christmas, what do you think we should do about the tree?" The boys looked at each other with raised eyebrows and said, "Why put it up?" I have to be honest and say that relief spread through Mark's and my entire bodies. We didn't want to put it up, we didn't want to decorate, but if the boys were bent on having it, we would've done it. But we are pretty much jumping up and down with joy that we don't. So, actually, the reason the tree isn't being put up this year has NOTHING to do with Rachel. Imagine that. I also noticed today that I just don't have the stress that generally comes with this time of year. None. It's a very nice change.

We will spend Christmas in a new way. A different way. Who knows, maybe we'll have so much fun that we'll start a new tradition and do Christmas this way every year. I sure like the non-stress of it. There is just something so "wrong" about Christmas anyway. A pagan holiday to worship a sun god that was filled with all sorts of "merriment" (from drunkeness to orgies and everything in between) was celebrated on December 25th. In the mid-400's the church decided to celebrate the birth of Christ (who wasn't even born in December and who told us to remember His death, not His birth) so that Christians would be able to have something to celebrate that day, too, and join in on some of the pagan festivities. Christmas has been outlawed several times since it's installation in the mid-400's. It is the retailers who reap the benefits of this "holiday" that has been dubbed secular versus religious by more than one court in this land. I just can't believe that God would agree with all of the stress--physical, mental, and financial; and all of the other things that go on all in the name of Christ during this holiday season. I've heard it said many times and have been guilty of saying it myself in the past, "We need to put Christ back into Christmas." Funny thing is, was He ever there to begin with? How many people celebrate Christmas that don't believe in Christ's virgin birth? Many. What's Christian about that?

It is with excitement and anticipation that we count the days down until Christmas but it is for a very different reason this year. We can celebrate our Christian heritage without "doing" Christmas. It is in our Savior's death that we are saved, not His birth. We will continue to believe in our eternal life and that we will someday be with the missing piece of our family--Rachel. We can celebrate that on a daily basis and connect with our Savior on a personal level each and every day. We don't need an appointed day to do that. As a matter of fact, we shouldn't wait for an appointed day. The Holy Spirit can fill us fully each and every day. We aren't made for happiness but for fullfillment. If we continue to search for happiness it will continue to elude us. Yet we can be filled to overflowing each and everyday and all we have to do is ask.

We're doing it our way this year. Not Mark's way, or Jodi's way, or anyone else's way, but "OUR" way--the Mark, Jodi, Blake, and Lance Hansen way. Will Rachel be with us? Of course! She's everywhere our brains are. Guess that means she's where ever we are, doing whatever we're doing. Yes, we'll miss her ... that's no different than any other day. Will she be brought up in conversation? Sure she will ... that's no different than any other day. Will we get through it? Of course ... just as we have each and every day since June 8th. Will it be hard? Uh, yeah! But every day is hard. She's gone. There's a huge hole in our family that is felt each and every day. You don't just "get over" that. The four of us will NEVER just "get over" it. It's something that will NEVER go away. The fact will always remain that a part of our family is missing. You don't just take out the spackling and putty knife and fill the hole in the wall. This is a hole that will never be filled. Mark and I are missing a daughter. We are missing a very part of ourselves. Blake and Lance are missing their one and only sister. You don't just get over that. And the fact remains that she's gone. She will forever be gone. We couldn't forget that even if we wanted to. Yes, life moves forward. But we will never be "over" it. We will never move "beyond" it. We will never put it "behind" us. It's impossible to do. So you live each day the best that you can. You put one foot in front of the other and you walk. You walk through each day the best way you know how. You walk through each milestone, each anniversary, each holiday the best way you can. There are no rights or wrongs in getting through this. We're doing it our way. And if others don't agree with that, well ... I really don't know how else to say it other than "We really don't care". It's about making it through this in one piece and only we know how we can best do that. No tree, no gifts, no family gatherings, and no church is where we're beginning. Where it ends? Well, we'll let you know after Christmas ... once we've made it through it.

Specific Prayers:
~That we continue to be filled with peace through this difficult time of year.

Saturday, November 24, 2007 1:44 PM CST

Thanksgiving was different this year. Although we had a couple of invites, because of deer hunting going on this week, we chose to stay home and have our own Thanksgiving dinner. We planned the meal together as a family and talked about what we're thankful for. It felt more like a big dinner than a holiday and I really think that's alright. It didn't feel any different than any other day around here does now. Sure, we thought about her, but it wasn't like there were a lot of people and kids whom she would've been spending time with doing what they were doing. There were no "reminders" that she wasn't here except for the ones that are always here. I think it was better this way.

What's been more difficult is deer hunting. The fact that I can actually go is quite strange. Mark has said that sitting in a deer stand, in the quiet, for hours hasn't exactly helped any. All you can do is think. You can be your own worst enemy. You sit in a stand thinking ... and thinking ... and thinking. The next thing that happens to me is the tears start flowing. Then, the sinuses kick in and the nose starts running. It's not a good combination when you're supposed to be both quiet and not moving. The tendancy is to wipe your eyes and nose and to sniffle an awful lot. I'd rather not be able to be out hunting because I've got a little girl at home who can't stay by herself yet. But no matter how much I wish it, it will never come true. She's not coming back. The hole in my heart will remain there for the rest of my life. There is nothing that will fill it. Nothing.

The boys have decided that they don't want a Christmas tree this year. Mark and I are more than willing to oblige them that one. We're not in the mood and pulling out all of the decorations sounds like way too much work this year ... physically and emotionally. All of her ornaments would be just too hard to deal with. Putting them on the tree and seeing them everyday would be like twisting the knife over and over and over again. No, I'm glad that I don't have to look at that, touch that, deal with that. Not this year.

We've also decided to not attend any Christmas functions--no church services, no family gatherings, no nothing. We're sticking together as a foursome and we'll muddle through it making completely new memories. Fun, exciting, just-the-four-of-us kind of memories. We're all very excited about it, actually. That makes the four of us happy. The fact that we're looking forward to Christmas and what we're going to do makes it not so bad to deal with right at this moment in time. We have no idea how the actual day will be, but if we're doing something so out of the ordinary that it doesn't even feel like Christmas, we should be okay. That's the goal anyway. :-)

She's not here, yet she's everywhere. She's in our first morning thoughts upon waking. She's in our last thoughts before sleep. She's there in our awake hours. She's in our dreams. She's the wispy thoughts between sleep and wakefulness. She's in the material things we find of hers around the house and in the garage. She's everywhere, yet she's nowhere. Sometimes I feel that I should be able to reach out and touch her. But there's nothing there. It's frustrating. It's frightening. It's hurtful. It's exasperating. It leaves you feeling empty.

You ache to hold her. You long to smell her. You just want to stroke her hair one more time. And you can't. The deep cavity of missing her runs long and wide. It doesn't seem to ever end. It runs as far as you can see and beyond. Beyond the horizon, beyond the decade, and into the next dimension. There is no crossing it, there is no getting around it, just walking through the muck and mire. She won't just vaporize before me. She won't just one day be in her bed. She won't just show up on the door step. She's gone. Forever. Gone. Poof.

Specific Prayers:
~Thankfulness for leading us through the day of Thanksgiving without Rachel.
~Thankfulness for showing us another way to celebrate during this season.
~To continue to lead us through the valley of grief.

CANCER SUCKS!!!!!!!!

Thursday, November 15, 2007 10:08 AM CST

Lance changed the station on the radio in my truck this morning. He was flipping through them and heard Christmas music and stopped. "CHRISTMAS MUSIC?!!?!!?" my head screamed. I stared at the radio. "How DARE they?!?!?!?" I thought. He opened the sunroof and stuck his head out. "Hey, Mom! It's SNOWING!!!" "Yeah." "MOM!! IT'S SNOWING!!!!" "Uh, huh." "MOM!!! It's melting on my fingers!!!!!" "Yeah great, Lance. Are you excited for snow?" "YEAH!!!" Huh. The older I get, the more I like GREEN. :-P

As the bus approached, he closed his mouth and stopped catching snowflakes. He closed the sunroof, grabbed his backpack and flung himself out of the truck with the exchange of kisses, "I love you's", and "see you after school". He climbed onto the bus with the bus driver waving hugely at me and Lance, sitting behind the driver, throwing kisses at me. I watched the bus go off into the distance and I realized that Christmas music was still playing. Christmas music. I'm not in the mood. At all. I'd like to go to sleep and wake up to it being June. Heck, I'd even take January. There is nothing merry, or happy about this Thanksgiving or Christmas. There's not even anything "new" about next year. It's the same old heartache. The same old barreness to the land. Thankful? Hardly. Celebrating? No thank you.

Of course we still have blessings. We're quite aware that our lives our full of them. We have two little boys (okay, not so little anymore) whom we hug and hold and love on each and every day. We know how blessed we are to have them. They know they are loved and wanted. But celebrating? Maybe sitting in a corner with a couple bottles of wine and a kleenex box fits the occasion better. Then again, maybe not. Maybe it should be THREE bottles of wine!! :-P No, drinking ourselves into a drunken stupor isn't exactly going to help, either. It's one of those sticking your head in the sand mechanisms. How long can one do that for? If I stick my head in the sand today and take it out five years from now will I feel any better? To say "no" would correctly assume that time doesn't heal.

Trust me when I say time doesn't heal. Time all by itself does absolutely nothing except pass. I will not miss Rachel any less in ten years than I do today. No matter how much time passes, I will always love her, I will always want her, I will always miss her--two months from now, five years from now, thirty years from now. I asked my grandmother if she still misses the babies that she lost on the day of their births 48 and 49 years ago. She said, "Yes." It's what I knew she would probably say but it's not what I wanted to hear. I have never heard her say that. We've talked about the babies but never REALLY talked about them. The day that we did she told me that it will never go away and that losing Rachel is much different than losing those babies. Even though I knew what she was saying was correct, my heart caught. I don't want to live with this forever. And as she said, "What are you going to do about it? We have no choice in the matter."

No, time by itself just passes. It doesn't heal, it doesn't make things harder or easier, it doesn't make us richer or poorer, or smarter or dumber ... it's what we do with that time that brings us closer to where we do, or do not, want to be. Time passing does bring anniversaries, Thanksgivings, Christmases, and birthdays. Time will continue to roll forward and bring us with it whether we are willing or unwilling passengers. I can sit on the train and watch the world go by me day after day after day with the tears streaking my face and sending mascara into my lap or I can make time pass quicker by finding ways to deal it.

Deal with it. Thanksgiving. Christmas. New Years. I don't want to deal with it. I don't want to deal with them. I don't want to celebrate. I don't want to decorate. I don't want to listen to the music. I don't want to. Not this year. And no matter what I do, Thanksgiving will come and go, Christmas will come and go, and New Years will come and go. Sticking our heads in the sand for the next six weeks actually sounds like a really good idea, actually. I'll just sit in the corner with my fingers in my ears going, "La la la la la la la la". I don't want to hear it, I don't want see it, I don't want to smell it, I don't want to feel it, I just plain don't want it. I certainly don't want to see, feel, or experience Rachel's pink Christmas tree. I'd like to burn every box of decorations I own. We'll work through the feelings. What we're going to do with them we don't know yet. How we're going to spend the next six weeks we don't know yet. How we're going to feel ... we really don't know yet. We have some ideas, we have some theories, we have some hopes. Some things still have to be discussed with the boys. It's their Thanksgiving, Christmas, and New Years, too. But, they are also grieving and thinking that things just aren't right. Things are very different. Things will be strange, and weird, and hard. New traditions. New ideas. New ways. New places. New. Different. Hard.

As a family we haven't decided if we're even going to put up a tree this year. The boys haven't decided if that's what they really want or not. I don't. Mark doesn't. But we'll do it for them if they want it. Presents? Well, we've got some great ideas for that one already and the boys are thrilled. I'm not doing ANY Christmas shopping this year. None. Zero. Squat. Have fun standing in all of those lines! :-)

We may run away a bit, we may stick our heads in the sand a bit, and yet we know that we are making changes. We are making new traditions. We are facing our grief but we are doing things differently. That's okay. We're allowed. Things change. Boy, do they change. And with that, we don't have to follow "tradition". We can blaze a new trail, we can make different memories, we can work through our grief without doing it "the same old way". We may be unpredictable and spontaneous. Yet, we know that no matter what we do or do not do, she'll be there. She's everywhere. In every waking moment she's there. She never leaves. Her presence is so real at times you think you should be able to touch it. Yet, we can't. She's not there.

She's not there. We miss her terribly.

Specific Prayers:
~That our family continue to find ways to move forward in grief through this very difficult season.

Friday, November 9, 2007 7:22 AM CST

It was harder than I thought it would be yesterday going back to the hospital for the first time since Rachel's death. Driving into the parking ramp yesterday morning felt as if I had just been there yesterday, not 6 1/2 months ago. I sat in my truck in the parking ramp talking to a girlfriend who had to deal with going back to the hospital that her dad tragically died at. She prepared me for a few of the things I would encounter, but as always, you're never really prepared because you just don't really know how it's going to hit you.

While walking from the truck to the entrance I realised that this was probably the first time that I'd ever driven in and walked in alone. I didn't have a stroller I was pushing. I didn't have a little girl either sitting in that stroller, pushing that stroller, or bee-bopping her way ahead of me. It was just a simple walk from the truck to the doorway. Huh. I didn't have suitcases or medicines. I didn't have food or stuffed animals. The only baggage I carried was in my head and on my shoulders.

I pushed open the door and the whoosh of air hit me like a ton of bricks. I was immediately accousted by the familiar smells and sounds and even the little, old cleaning lady that cleans the skyway and knows us was standing right there. Her face lit up and she smiled at me. I smiled and said hi. I walked the corridor knowing that this time was different. This time was VERY different. I passed the gift shop hoping that the woman who knows me well (and especially knows THAT tutor!!) wasn't working. She wasn't. I breathed a sigh of relief. I stopped at the desk to get my pass and they still have me in the computer. Part of me was happy that I didn't have to go through the whole process of picture taking, etc., and part of me was sad that I was in the computer.

I then walked through the tunnel between Children's Hospital and Abbott Hospital. The tunnel that we used to always take to go to McDonalds. The same tunnel that we used to use to go see the specialist about her foot braces. It was lonely. I could literally imagine her walking along side me and in front of me with her blonde hair and pink sweatshirt on. I shook my head hoping to rid myself of those thoughts. I finally came to the end of the tunnel and followed the signs to the surgery waiting room. Oh, good ... a place I've never been before. A place that absolutely holds no memories for me.

Cody's surgery went as well as it possibly could! We are definitely praising God for that one! It was a tough surgery that had the potential for a horrible outcome because of the location of the tumor. I'm very happy to say that all of Cody's limbs are working and that they got all of the benign tumor out. Hopefully now Cody won't have to be dealing with a lot of the awful things we think this tumor has been causing.

After surgery, Cody was taken to the Pediatric Intensive Care Unit (PICU) at Children's. I knew that I would have to deal with memories of Rachel being there 2 1/2 years ago. I knew that I would see doctors and nurses that I knew there. But I wasn't prepared to see half of the oncology ward there, too.

As we walked in, several of the PICU doctors were behind the front desk and they looked at me with quizzical faces. Then they waved. I waved back. Slowly one of them made his way over to me and wanted to know what in the world I was doing there. I stayed with Cody while his parents had to go deal with getting long-term passes together. One of the nurses helping to get Cody settled looked at me and said, "I know you, don't I?" Mmmmmmmmmmmmmmmmm ... yeah. I explained that my daughter, Rachel, had been in there for a couple of weeks a couple of years ago. You could see the cogs turning in his head. "The same last name as Cody?" "No ... Hansen." He gasped as he exclaimed, "RACHEL HANSEN!!!! I KNOW RACHEL!!!" "Yes," I said as I smiled. "Rachel died this summer." He looked at me horrified, he said he was sorry, and then, lo and behold, a nurse practitioner from the oncology group walks by, sees me and comes into the room announcincg, "I heard you were going to be here today." After talking with her for quite awhile, she left and ended up taking some parents into the conference room which is located right across from Cody's room. I looked at Carol (Cody's Mom) whom had returned while the nurse practitioner was there and said, "A trip into the conference room isn't good. They never take you into the conference room to give you good news." One of Rachel's oncologists showed up and walked into the conference room. My insides were turning to mush.

Over the next 30 minutes, it seemed as if the entire oncology floor had paraded by. I was prepared to see the PICU people and really thought that I wouldn't have to deal with seeing all of this "extended family" until Cody got up to that floor (they're putting him there because it's a more germ-free floor and Cody has issues with lower white counts). I ended up out in the hallway and while standing there felt someone looking at me. I turned, and two feet from me was one of Rachel's primary nurses--one of her absolute favorites. My heart lurched. Oh, it was hard. It's hard thinking about it right now. It didn't help knowing that I knew why all of these people were down here ... another little cancer patient was dieing. They can't tell me that due to privacy issues, but I've been around just a tad bit too long to not figure it all out. The mother was squeezing a stuffed animal and needing to be held up by her husband and one of the oncologists. I know that feeling. I know that look. Sadly, it's not the first time that I've seen it.

As I stood there watching the flood of activity and as I watched this woman being consoled by medical staff, it made me very happy that Rachel didn't die in that place. I'm so glad that she died at home in my arms. I'm so glad that she died in my bed. I'm so glad that I was surrounded by my wonderful friends. The last people that I wanted around me at that time were medical personnel. My friends at least know me well enough to know what to do. Yes, the staff there has dealt with death many times over, but they don't know me. Although very hard to watch, although very hard to see all of these people, and although very hard to relive those feelings, I was so comforted by the thought that Rachel didn't die in that place.

I found it interesting that the pediatric oncology psychologist who was in the PICU because of the situation kept telling me that I needed to be taking care of myself and that didn't necessarily mean being there for Carol and Cody. What an absolutely complete statement of how our society thinks today: Me first. I shook my head at her and told her that this is what friends do for one another. She told me that I didn't have to do that. I looked at her and said, "Today isn't about me. Yes, this is the first time back to the hospital for me since Rachel died. Yes, it does happen to be the five month anniversary of Rachel's death. Yes, it's hard. But, it's not about me. It's about Carol and Cody today. If I stopped and wallowed and had the 'it's about me' attitude I'd never accomplish anything. It's not about me. Not today. There are certain times for that, but not today. This is what FRIENDS do for each other." She nodded, smiled, and hugged me. Then she added, "That's just so Jodi."

Okay, I find that STRANGE!!! Have we all just gotten so caught up in ourselves that we can't give to a friend even if it hurts? Are we all so into ourselves that we don't go beyond what we like to do or what is comfortable or what makes us happy? Has society gotten so far away from what is right and into such a "me, me, me" thinking that we never think of anything else and even psychologists are promoting it? I think we all need to search our souls on that one. I think society is wrong. Dead wrong. When someone needs you ... you be there. And you don't wait for them to ask. You be there no matter how much it hurts, no matter how much it's unhappy, no matter how much you don't like that place where they're at ... it doesn't matter. It's not about you. Am I totally off-base here? When I needed them, my friends were ALWAYS here--without asking. At the drop of a dime. That's what friends do. Period.

The day was hard. The day was draining. I was exhausted. But it doesn't really matter. What's important is that Cody is doing as well as he possibly can and that he heal so that he can get home back to HIS friends!

As I left there last night, I couldn't help but smile. As I rounded the corner by the Welcome Counter and said goodbye to the people I know who were sitting there I realised that I wasn't leaving a child there. I didn't have the pangs of a mother leaving her "baby". I always found it interesting when people thought that you should "get away for awhile". Although you want to be away, you want to be away with your child. When you're out of their room, all you do is think about them and what's happening. You don't want to leave without them. Even if somebody forces you out, all you do is think about your child and you don't enjoy what you're doing anyway. And there's always the guilt. That everlasting Mommy Guilt. This time, no child being left ... no guilt. I walked past the gift shop and the woman I know was working. I smiled at her. I walked out the skyway knowing that I'd done it a million times before but that this time was totally different from any of those other times. I also knew that I'd once again be back in a few days, just to trip all over my heart once again. I smiled again knowing that's what friends do for one another. I know that next week I'll be dealing with the onoclogy ward. I know that Cody could be in a room where Rachel was. I know that I'll see everyone I know there. Again it will be hard. Again it's not about me. It seems as if nothing has changed. Yet, everything has.

I'm a very different person today than I was in April. I was a different person in April 2007 than I was in July 2002. I've changed. I've evolved. I'm different. It is a very different person walking through those doors now with a very different agenda. I'll make it. My heart may hurt, but that's okay. If it hurts, I know I'm alive. If it hurts, I know it's because I love. To be unfeeling would be to be dead. I accept those horrid feelings even if they hurt. I'd do anything for my friends. They've held me up during the abolute worst thing a person can go through ... the death of a child. My friends were there, my friends are there, my friends will continue to be there. And I for them. It's not about me.

Specific Prayers:
~Praise for the awesome outcome of Cody's surgery.

CANCER SUCKS!

Monday, November 5, 2007 12:18 AM CST

Halloween was certainly different this year. I was able to drop off the boys at one end of the street in my dad's development and pick them up at the other end. Mark didn't even come along as he's always had to do otherwise. There was no need for me to be out of the truck carrying a little girl because she just couldn't walk all that way. It was easier, it was warmer, it was very different.

I'm on a fact finding mission. Many of us have recordings of Rachel's voice on our cell phones, answering machines, etc. and I would like to get a CD made of all of them. Does any techy guru out there know how I can do this and still have it be good quality?? Also, if you have a recording of Rachel's voice, would you please let me know about it so that I can hopefully soon get a "copy" of it? Thanks!!

Also, I'm now ready to see pictures of Rachel's funeral. I know people were taking pictures and I've found two people this past week who have pictures (one person has forwarded me them so I've already looked at them). If you have pictures of her funeral or visitation would you please let me know and get me copies of them ... whether hard pictures or via email. Also, if you have pictures of Rachel I'm pretty sure I'd like to have copies, if I don't already. Again, hard pictures or via email is fine. I'd like to start getting my pictures in order around the new year so that I'm ready to get everything into albums and start scrapbooking the ones that I want to by next spring. Those of you whom have offered to help me scrapbook, I'll be putting out a plea to you then!!! :-)

Please pray for my dear friend Carol Metz's son, Cody. He has a growth/tumor in his spinal column and is having surgery on Thursday. This will be my first trip back to the hospital since Rachel was last there. It will be hard, but it's not about me. Thursday is about Cody. Carol was one of the first people there for me when Rachel was diagnosed and she never left my side. Rachel loved her dearly ... the reverse is also true. Carol played the flute at Rachel's funeral and directed the kids when they sang "Jesus Loves Me". Cody's website is: www.caringbridge.org/visit/codymetz

Specific Prayers:
~Continued peace as the five month anniversary of Rachel's death approaches.
~That we find a way to preserve what we can of Rachel's physical being.
~For Cody's surgery to be successful, for an awesome outcome, and for complete healing.

Monday, October 29, 2007 9:52 AM CDT

The cemetary stalking continued on both Thursday and Friday. On Thursday, it was cold enough when I went to the cemetary that I donned my leather coat, which I haven't worn since last spring. While standing looking at her unmarked grave my hands got chilly so I stuck them into the pockets of my coat. "What's this?" I thought as my right hand felt something metally. I clasped my fingers around it not recognizing the feel of whatever it was in my pocket. I pulled it out and gulped. There in my hand was a small tube of Emla cream--the numbing cream we would put on Rachel's port so that it wouldn't hurt as much when she got the needle put into it. Another reminder of Rachel ... and at her gravesite. I raised my eyebrows, chuckled, and stuck it back into my pocket.

I started back to my truck. My left hand felt something in it's pocket. A kleenex maybe? That made me giggle because my mother had a kleenex in every pocket she owned. Being that my mother's gravesite is very near Rachel, that would've been fitting and funny, too. I felt the object a little more thinking that it HAD to be a kleenex. Then I pulled it out. It was white ... but it was NO kleenex! I literally burst out laughing as I saw the purple banding and the knowledge of what I was holding came full force over me. It was a piece of white cotton with purple on the top. I opened it up and Tinkerbell stared back at me. I laughed as I turned back around toward Rachel's gravesite and held up my prize so she could "see" it (yeah, whatever). In my hands I held a very small pair of little girl's underwear. I looked inside. Yep, dirty. I always carried extra underwear with me when Rachel was having her diarrhea spells. Obviously she'd gotten a bit of a skidmark (sorry if that's too much info for some of you) and wanted her underwear changed. Being that they weren't THAT dirty I didn't stick them in a bag but just shoved it into my pocket figuring that I would remember to take it out and throw it into the wash. Obviously, I forgot. So, another piece of Rachel, another memory ... at her gravesite, no less. Uh, I'm not hanging those in my office, though! I'd prefer to find notes and cards. The dirty underwear and socks just don't quite do it the same way.

The stalking continued until finally, on what was to be my last visit on Friday, I see a large truck as I'm pulling up to the cemetary. "PLEASE let it be them!" I thought as I pulled in. Sure enough. They were setting the stone right then and there. Lance and I got out of the truck and went up to her site. We talked to the guys who were installing it and Lance rearranged all of the memoriabilia around the stone. It really looks nice. I'm really happy with it. Mark has yet to see it as he and Blake were up on Lake Superior fishing again this weekend. He'll go see it today.

I'm thinking of planting some pink shrub roses in back of the stone. I need to do some researching on which ones won't get too big and will bloom all season with beautiful pink blooms. Would be nice to do it yet this fall, but it may not happen until spring ... that works, too. Seeing her stone wasn't as hard as I thought it was going to be. Maybe it's because there was so much anticipation for it and it got to the point that I just wanted it IN. By the time it finally did get there, I was relieved. Maybe the stalking helped! Tee hee!! We'll sod her plot in the spring because it does continue to settle. Being that we had hardly any rain this summer, all the rain we're getting this fall is making it continue to settle. I think letting a winter's worth of snow sit on it will help it settle, too, and then we can just go to town on her site next spring.

So, it's there. It's in. It's finalized. Her name is set in stone. Even for how difficult the whole thing is, it's a beautiful site. Oh, how we miss her. Oh, how unfair it seems to have two empty parent plots but a child's plot marked with stone. Oh, how difficult this is. Mark and I thought losing our parents was incredibly tough and horrible. It's nothing--not even close--to losing Rachel. This IS the most horrible thing we've ever had to deal with. I really can't imagine anything worse. I really can't. It's as if our very souls have been ripped in two. I don't expect you to understand even slightly unless you've stood where we're standing. I hope you never do. We belong to a very exclusive club. One we didn't want to be a part of. I know that others will join us--it's the way of the world. I pray it's not you.

Specific Prayers:
~Thankfulness for the shoulders and arms of wonderful friends.
~For peace as we continue to walk through the valley of grief.
~For continued findings of pieces of Rachel.

CANCER SUCKS!!!!!

Thursday, October 25, 2007 7:07 AM CDT

Due to all of the cleaning and reorganizing that has been able to take place in my office, I have a section just for books that I have recently read and find pertinant to my life right now, am currently reading or still need to read. Most of these books have either been given or loaned to me. I don't like to keep books that have been loaned to me too long, as I'm afraid they're going to get misplaced. It's nice now to at least have one place to keep them!

I had some tapes, books, and some other things to return to my sister-in-law and her friend--whom, through God's grace, has also become my friend. I consider these two women not only friends, but spiritual mentors. We all went out to lunch and I felt like Santa Claus carrying in this huge heavy bag of books and tapes. After lunch I started taking the books and tapes out of the bag and putting them into two piles on the table. I noticed that I had a bookmark still in one of them. I opened the book to that page and started laughing. I pulled out the bookmark and showed it to the two of them. "What IS that?" they both said. I laughed and so did they when I told them it was an opened alcohol wipe package. I know that I had been reading this book at Rachel's bedside during her last few weeks of life. I obviously had been giving medications and left an opened alcohol wipe package on the bedstand. I guess I needed a bookmarker and guess what was handy?? Too funny. It reminded me of the bookmarker I had found just a few hours earlier as I was getting all of the books and tapes together.

A purple envelope was sticking out of one book. It was another book that I had read while sitting at Rachel's bedside. I pulled out the envelope and the word "MOMMY" and a star and a smiley face in Rachel's handwriting stared back at me. A lump formed in my throat as a smile slowly etched it's way across my lips. I just found another bit of Rachel! I opened the envelope and pulled out a card. Three kittens looked sweetly at me from the front of the card. The card said:
No kitten around.
Happy Mother's Day
And in Rachel's writing:
To: Mommy
I love you Mommy
From: Rachel
With another large star and a smiley face.
My Mother's Day card from her this past May. The last Mother's Day card I will ever get from her. The last Mother's Day that I was able to hug her and hold her and talk to her. It is the last Mother's Day that she was walking and talking and giving me kisses. Life can truly be unfair. The card, along with it's purple envelope, are now hanging in my office. I can't even part with the envelope because it has her wonderful handwriting on it.

"Is Rachel's headstone in yet?" my sister-in-law questions. I shake my head no. I had called the place that is doing her stone Monday afternoon wondering why it hadn't been installed and they said that with all of the rain that has been happening here (we've set a record for the amount fallen in a two month period) at least two of the three cemetaries that they were going to set stones in last Saturday were too wet. We haven't had rain now since last Friday, so they are hoping to give the ground a chance to dry out before setting them either tomorrow or Friday. So, Little Miss Pigtailed Scarecrow still stands proud in her spot until either tomorrow or Friday. She'll get put back up, just not where she's at. We've been having glorious sunshine the past couple of days and it's looking to repeat that again today so I'd say chances are very high for an installation within the next two days.

"Oh, Jodi, we don't want any of those books back," the two of them stated. I looked at them blankly not quite comprehending the gift. A few tapes and a few newsletters were all that I left at the lunch. I trudged that large bag back home feeling loved by them and by God. It was truly a wonderful, peaceful, warm feeling. It was a good lunch! :-) And it had nothing to do with the books ...

Now I get to reread those books and WRITE in them! I love to write in books ... you should see my Bible!! Speaking of which, it's time to do my Bible study.

Another piece of Rachel found. Another day of waiting for her headstone. At least the plaque at school marking her tree is now in and installed. It looks VERY nice--very classy. Once again, our school has more than risen to the occasion. We are very blessed to have such wonderful people surrounding Lance and our family. I wonder what other treasures of Rachel are yet to be found?

Specific Prayers:
~Thankfulness for the friends and family members who surround us, support us, encourage us, sustain us, lift us in prayer, call us, come over, and who are now the weavings of our lives.
~That we continue to find tidbits of Rachel.

CANCER SUCKS!!!!

Saturday, October 20, 2007 10:55 PM CDT

"This cemetary is so peaceful," I think to myself as I drive into "our" cemetary, the gravel crunching under the tires as the Suburban creeps slowly under the archway of trees. The truck crawls along the length of the old cemetary and when I turn the corner Rachel's gravesite comes into view. "What is THAT?" I ponder as a see a scarecrow-y type thing on her grave along with all of the other trinkets and memorabilia that have been left for her. I exit the truck and walk up to her grave. I start laughing out loud at the scarecrow-y type thing. It is definitely a scarecrow. With PIGTAILS!!!! It's absolutely adorable. Rachel would've loved it! I think I know who left it, too, don't I??!! :-) Thank you!

I glance up from her grave and see both my mother's and Mark's dad's headstones. Rachel's headstone is supposed to be installed today. That's why I'm here. Her gravesite was to be staked and we had to make sure it was done correctly. Her headstone is a little unusual and larger than your "average" single headstone. They will have to overlap a tad onto the plot to the north. My plot. Someday I will lay next to my daughter. Someday my headstone will be next to hers. Someday I will be with her again. A lump catches in my throat. I look again at the headstones of two people I love very much. Is it better to have the headstone? Is it better to have the reality staring you in the face? Or is the unmarked grave better? There is no name on this plot of dirt. Not that we're delusional by any means, but will the headstone make it real?

I fix some of the flowers on her grave, twinkle the windchimes that are there, and smile once more at the pigtailed scarecrow. I glance at the wooden stake with a large piece of tape attached to it with the name "Rachel Hansen" written on it in black marker. I grunt. I look once more at my mother's headstone. I don't know. It may be easier for it to remained unmarked. But, it won't. Her name will be set in stone.

I walk down the hill to my vehicle. I crawl into the driver's seat and slowly wind my way out of the cemetary. A tear trickles down my cheek. No, I'm on my way to an event at church. I don't need this now. Tears don't seem to care where you're going or who you're with. Sometimes they just come. Sometimes they catch you off guard. The cemetary doesn't often bother me. She's not there. I know where she is and six-feet under isn't it. Yet, today, there are tears. They flow like a river out of my eyes and down my cheeks. None of this trickling stream stuff, we're talking wide river. Oh, for pete's sake. It must be the headstone. The anticipation of the feelings that will come seeing her name in that place.

On the way home from church I stop to see if the headstone has been placed. I brace myself for an onslaught of feelings. Little Miss Pigtailed Scarecrow is still standing tall amongst the flowers and trinkets and there is no headstone. Huh. I head back there twice more during the day. Each time I am disappointed not to see the headstone. For some reason it was not installed as planned. Maybe Monday.

I had to laugh at myself on the final return trip back. Have I ever been to the cemetary four times in one day?? I chuckled some more. Have I ever been there four times in one week?? I don't think so. That made me laugh some more. I wonder how many trips Monday will bring. Being that the cemetary is only a 1/4 mile from our house, it's only a couple minute jaunt up there and back. Somebody's going to think I'm a cemetary stalker! Just 'til the headstone gets in, I guess.

I continue to find bits of Rachel as I finish cleaning my office. For all of my special friends whom I allowed to see my dungeon, I want you to know that there is burber carpet on the floor, the table top is white, my desk top is brown, and the filing cabinets are tan!! I have found each and every one of them. It's absolutely amazing. I even vacuumed in here today. Blake walked in this evening and said, "Wow, Mom! This is great!" Thanks, Honey!

In said piles of stuff, I found a pink Hello Kitty Christmas card that she gave me last year. It's on the top of my computer now. I also found a notecard that she wrote:
Rachel
To Mommy
I Love You
Then she drew a very colorful rainbow on the back. That is hanging up along side the other note I found from her a couple of weeks ago. I doubt I will ever take them down. May as well super glue them up ... who needs a magnet? I also found a picture she drew for Grandpa (my dad) of her and Grandpa. It's now hanging on his refrigerator. I'm almost afraid that I'm going to stop finding these tidbits of her. I know they have to stop at some point. I don't look forward to that.

The anticipation now is her headstone. Part of me is excited about it, but part of me is dreading it. It will be bitter sweet. And we go on "living" without her ...

Specific Prayers:
~That the Lord help us to continue to walk forward through grief and not get stuck.
~That the Lord continue to speak through His Holy Word to us on the meaning, the purpose, and the outcome of this event.

CANCER SUCKS!!!!!!

Saturday, October 13, 2007 9:14 AM CDT

Another one of her socks in the laundry. Another skipped heart beat. Another moment that I forgot to breathe. "HOW IN THE WORLD??????" I wonder as I stare at the little purple foot covering lying innocently in my laundry basket. How can one little purple sock send my entire being into a whirlwind? It's almost like seeing the dead. I want to touch it, yet I'm scared to. Touching it may burn me just as surely as the unexpectedness of seeing it has done. WHY IS IT THERE?!?!?! I want to scream. Then the realization hits. We cleaned closets. I found it. I put it in the laundry because it was a dirty sock. I laughed when I first found it. Picked it up, smelled it .... yep, dirty. Hey, after as long as it's been who knows if it's clean or dirty! But then I forgot about it. It literally jumped up and bit me while I was folding clothes. Something how that happens. It will get put with it's partner lying lonely in her drawer. I don't know when I'll be able to go through her things and clean them out. Right now I'm not worried about it. We're still dealing with other things that are at hand ... like missing socks and tree dedications.

At Rachel's visitation, Lance's teacher that year brought a beautiful basket of flowers along with a note stating that Lance's entire class had purchased a tree in memory of Rachel that would be planted at the school. Last weekend that tree was planted and this past Thursday it was dedicated. The entire school gathered for an assembly, including our family and others close to us. Several of the firemen and paramedics who were here the day Rachel died also attended.

The prinicpal of the school and the guidance counselor both spoke wonderful things about Rachel. It was very touching, heart warming, and special. Then the second graders (which Rachel would have been this year) sang a song.

Twinkle, twinkle little star
How I wonder what you are
Up above the world so high
Like a diamond in the sky
Twinkle, twinkle little star
How I wonder what you are

Twinkle, twinkle precious friend
Lots of love to you we send
Up above the world so high
Like a diamond in the sky
Twinkle, twinkle precious friend
Lots of love to you we send

Then the entire school sang:

Twinkle, twinkle little star
How I wonder what you are
Up above the world so high
Like a diamond in the sky
Twinkle, twinkle little star
How I wonder what you are

I was told the words a couple of weeks before the assembly. I cried when told them. I was given the words in an email. I cried when I read them. I've told several people the words in the weeks before the assembly ... I cried each and every time I said them. I cried hearing them at the assembly. I cried now typing them here. Geesh! Twinkle, Twinkle will never be the same again.

After the assembly (which the principal said was the most behaved assembly she's ever witnessed), Lance's second grade class from last year and Rachel's first grade class from last year went out into the courtyard where the tree is planted. Again the principal and the guidance counselor talked and then Lance and Blake tied on this BIG, beautiful pink ribbon bow. On this ribbon was every one of those children's name that they had written on themselves. Then pink ribbons were handed out to all of the kids and adults to wear on their wrists. It was very nice ... very touching.

The tree is beautiful! It's a pink flowering crab that right now is totally loaded with fruit. When the birds find out it's there, I'm sure it's going to be full of tweeting, winged things. It's planted in a courtyard where the first grade classes are on one side of it and the second grade classes are on the other side of it. Very fitting. It's also RIGHT outside one of the windows of Rachel's first grade classroom. Rachel's teacher literally has a bird's eye view of it. On one hand I feel bad for her that she has to look at it every single day and have that reminder. Then again, I feel she's very lucky to have that beautiful reminder every day. She also has the choice to close the blinds on that window. What a view she'll have this spring when it blossoms into all of it's glorious pink blossoms. They also planted pink tulips underneath the tree so there is going to be pink blossoming everywhere! How absolutely wonderful! Rachel would've loved it!!

Thank you to all of you who told me memories of Rachel. Although that wasn't the intent of the post, it sure was fun to read all of your memories. I really smiled big and chuckled at the reminder of Rachel's nursery rhyme she said in kindergarten! Thanks, Karen!!! :-) The intent of the last post was just to bring to the forefront that we haven't been taught how to talk to those who are dealing with death. We all know how to talk to people who have given birth to live babies, but death is a totally different plane that we don't touch on for some reason. I just wanted to "give permission", if you will, to talk to me and to others who have lost someone close about those people. You don't have to understand. I personally hope you NEVER understand what it feels like to lose a child. Most of us will learn at some point what it feels like to lose a parent or a friend. But for those who are fortunate enough to have never experienced a loss such as these, it can be uncomfortable to know what to say because we have never been taught what to say or what's okay to say. I just wanted to get across that it's okay to talk about those we love ... dead or alive. It's okay to "bring it up". It's okay to just say, "I'm sorry." It's okay to share a memory ... or two or three. It's okay to share a hug. It's okay if we cry. It really is. Trust me, it really is okay if we cry.

I really can't tell you that things are getting better. I'm not sure it is. For some reason the past couple of weeks have been very hard. So far, time hasn't changed a darn thing. There's a huge hole in our hearts, in our lives, in our very beings. It's not getting any smaller and the edges are still very raw. This IS the worst thing we have ever been through. Thank you for your continued prayers for our family.

Specific Prayers:
~To feel God's presence and loving arms around us as we continue to walk the road of grief.
~That through our walk, others will see Christ, not us.

CANCER SUCKS!!!

Monday, October 8, 2007 4:55 PM CDT

Four months. It's been four months today that she died. Only four months ... it feels like an eternity.

It's been four months, yet my every hour is still filled with thoughts of her. There are reminders of her everywhere. The thoughts come from nowhere. She just is ...

A couple of weeks ago, I was talking with the mother of one of Rachel's friends. We were discussing some things that happened while the girls were in class together. Another mom who was there asked, "Are you Rachel's mom?" "Yes, I am," I replied. "Oh, I thought so by your conversation but I didn't want to bring it up." I smiled at her and said nothing, but my insides were screaming, "You're kidding me, right???" Didn't want to bring her up?? It was 7:30 in the evening, did she honestly think that she would be the first one to "bring her up" that day? Rachel is practically the first thing I think of upon waking, she is most definitely the last thing I think of before I go to sleep, and there is hardly an hour that goes by that I don't think of her multiple times. "Didn't want to bring her up"? Hardly. The other thing that ran through my mind was that this woman has never lost anyone close to her.

I know that many people don't know what to say. I think that's sad. It's like we're supposed to brush death under a rug and not talk about it. Death is a part of life. The reason we don't know what to say to one another is because we've never been taught what to say. We've never been taught that it's okay to talk about death and that it's okay to talk about people whom have died.

I love to hear my mother's name. I love it when people talk about her in front of me. "Ellen did this ...." or "Ellen did that ....." or "What would Ellen have done?" or the many other wonderful things that I've heard. I hold them all dear to my heart. Rachel, too. "Rachel had the BEST smile!" or "Rachel was so funny!" or "Remember when Rachel ...." or any of the wonderful things about her. I hold all of these dear to my heart, too. I like to know that these people I love touched you. I like to know the things you found fun, exciting, or endearing about them. I like to know that you haven't forgotten them.

To not talk about them is to deny they ever existed in the first place. They LIVED! Oh, did they live. To talk about them may make me cry. Yes, it might. But that's not your fault. It's because I miss them. It has nothing to do with you. Even if I cry, I'm glad you talked about them. I make myself cry, so don't worry about it. I can become a blubbering mess all by myself all alone in my house. Trust me, me crying in front of you probably isn't the first time today it's been done. Trust me when I say you're not the person who has brought them to the front of my mind ... I've already done that all on my own today. And probably multiple times already. You are not the first today, nor will you be the last.

Don't be afraid to say their names. I love hearing those names. I love to talk about them. But, even a hug and an "I'm sorry" will suffice. Trust me, no words you have of condolences or sympathy will take away even one millimeter of the pain. No words you say will bring her back. But the words you speak can share a memory. The words you speak can tell me that you remember her. The words you speak can tell me that she was special to you or to your children. It certainly doesn't have to be fancy, or thoughtful, or earthshattering. Just a "So you're Rachel's mom. My kids went to school with her. I'm so sorry for your loss." What a great way to let me know that you knew her or knew of her. Even if you never knew her an "I've heard about her" is a good thing, too.

I'm teaching Sunday School this fall. Our church does rotation Sunday School so each week I get a different grade level. A couple of Sundays ago, I had the fourth grade. We were going around telling our names and I said my name and that they might know my son, Lance, who was in third grade. Then I said that I also had a son, Blake, and a daughter, Rachel. One little boy said, "I knew a Rachel Hansen but she died." "Yes," I said, "Rachel is my daughter." All of their heads whipped toward me with their eyes bulging and their mouths on the floor. "You're RACHEL'S mom???" "Yes, I am." "COOL!!!" Okay, I'm not sure if it's cool that I am Rachel's mom or that Rachel's mom is teaching Sunday School. Not sure which, and it doesn't matter. It's cool! :-) As the lesson went on, that same little boy brought up the cemetary (we were talking about where we could "fish for people" to tell about Jesus--the cemetary wasn't exactly what was in mind, but he was being a little smart alec). They then wanted to know who mowed the lawns of the church's two cemetaries. "There's TWO cemetaries?" a little girl asked. "Yeah," little mister wise guy answered. "The one by the road and the one where Rachel's buried." At that exact time another adult walked in. I thought the woman was going to croak. I laughed and said that that was correct that we did have two cemetaries and that Rachel was buried in one of them. I also told them that people in the church mowed the cemetaries, and then proceeded on with the lesson. It was fine. Children have no concept that death is a taboo subject. Too bad us adults didn't have that same concept. It shouldn't be taboo.

You can talk to me. You can talk about Rachel. She is still a very huge part of our lives. She always will be. Nothing we do or say will change the fact that she died. Nothing we do or say will bring her back. Nothing we do or say will make me feel better or worse. Nothing we do or say will make me cry harder or less than I already do. It's better to say something and acknowledge her than to let the moment go by and pretend she never existed. "I'm so sorry" is a great place to start or a great place to end or all that needs to be said. Adding something you know about her is icing on the cupcake. Trust me, I've already thought about her today. I've already cried about her today. You will not be the one to "bring her up" for the first time today. You will not be the one to "bring her up" for the last time today. I do a darn good job at both of those all by my little self.

Rachel is still a very huge part of our lives. She always will be ...

Specific Prayers:
~For others to not fear those who are grieving.
~That the rawness of the wound become less painful for Rachel's family.

CANCER SUCKS!!!!

Thursday, October 4, 2007 5:07 PM CDT

I'm cleaning my office. I mean CLEANING my office. Bags and bags and bags of "garbage" (stuff I no longer need because of a certain event that happened in June) have been hauled out of here. I still have a long way to go. While going through a stack of papers, I found a pink post-it note. It says:

To: MOMMY
From: RACHEL
I Love You so
mach MOMMY
I like to cuddle
with you Mommy
so mach I like.

On the back are the words:
I Love You
with a picture she drew of her and I.

It's now posted in my office.

Specific Prayers:
~That we continue to find pieces of Rachel throughout our daily lives forever.
~That Rachel, and the lessons she taught, never be forgotten.

CANCER SUCKS!!!!

Monday, October 1, 2007 9:57 AM CDT

Lance turned nine yesterday. Unreal. Today I have to bring in cupcakes to his class. Sounds a little familiar, doesn't it??? Yeah ... he's doing everything "just like Rachel". I don't know who it's killing faster, Mark or me.

Lance wanted to have his friend birthday party at the same place that Rachel had her last party. That party that holds terrible memories for Mark and I. The party that was, but wasn't. That party that all the other little girls enjoyed except for our little girl, the one it was for. That horrible, awful birthday party when our girl was in SO much pain and then ended up being overdosed on pain medication.

The place we had it at, Party Bound (they have large inflatables--slides, obstacle courses, etc), is a wonderful place and kids love to go there. It just holds sad memories for us. Yet, we couldn't tell Lance he couldn't have his birthday party there just because we have sad memories. How selfish that would've been! "No, Sweetie, you can't have your party there because Mommy and Daddy have bad memories of your sister there." I don't think so. You know what? We have sad memories at home, too, but you don't see us putting the "For Sale" sign out front. So, we "did" the party. We did it together. We sat in the same chairs. We played the same games. We did it. But it was entirely different--for several reasons.

It was boys! Seventeen wild and crazy boys. They had a BLAST!!! Glad all I had to do was watch and Party Bound does all of the facilitating! All the parents have to do is bring the cake, candles, and camera and then have a seat and watch them do all the work! Kinda like that. We got to watch our birthday boy having a blast with all of his friends. Running here, running there, jumping, sliding, climbing. Totally different from Rachel who could hardly walk because of all of the pain she was in.

We actually got to "enjoy" him and his fun. We weren't cringing at everything because she was so uncomfortable yet wanted to be in the action. We weren't just trying to make it through it. We didn't have to administer medicine or assurance. We didn't have to feel guilty, sad, or mad. We just got to be.

We didn't have to help open the gifts. He was totally capable on his own, unlike how Rachel was that day. We didn't whisk him out the backdoor at the end so thankful that we could take him home and put him to bed. No, he got to do what most children get to do ... say goodbye to everyone and handout giftbags. Heck, he didn't even come home with us. He ended up going home with one of his friends who was having a birthday party an hour afterwards. Yeah, TWO parties in one day! "Normal". Just so "normal".

The other thing that was different was that she wasn't there. I kept envisioning a little blondie being there with seventeen boys. They would've ran her over so bad. I sat and watched all of these boys and wondered how she would've fit in. She would've wanted to so bad. It would've fallen to someone--me, Mark, or Blake. It was strange to not have to be involved because of her. It was strange to just sit back and watch and not have to do ANYTHING. I'm just not used to that. To actually sit with no requirements laid on me. It felt empty.

I sat there and remembered going down the large slide with her just so she could say that she did "something" at her birthday party. I decided to go down the slide with Lance so that going down the slide with Rachel wasn't the last thing I'd ever done there. Lance was thrilled. We held hands as we went down. I got to the bottom and there were already boys coming down the slide and they crashed into me. You know, that hurts more now then it did when I was their age!!

It was hard, yet on the same token it was easy. Hard emotionally but easy physically. But now we've done it. Our last experience there isn't one with Rachel. It's no longer that terrible experience with her. It's now a happy one. It's now over. Thank God.

Yet, today, I bring those white cupcakes with vanilla icing and rings on top--"just like Rachel". It will be okay. I will be okay--I hope. It can hit at the most strangest hour.

Yesterday in church we started singing, "Precious Lord, Take My Hand". I didn't even make it through the first verse and I was crying. Then I realised, we sang this song at Rachel's funeral. I haven't sang it since. I don't know if I'll ever be able to make it through that song again. It's meaning has totally changed for me. Of course, my boys are looking at me like I've totally lost it. "Are you crying!?" Lance exasperately asked me. Blake was looking at me with this mixed look of horror and helplessness. When I finally muttered, "We sang this song at Rachel's funeral," then both of their faces softened and they both put their arms around me and quietly said, "Oh." They each laid their head on one of my shoulders and rocked me. I'm still not sure if that made it better or worse. Aren't I supposed to be comforting them??? You know, without trying to sound TOO awfully predjudice, I have great boys. :-)

Another birthday celebrated without her. A weekend full of "firsts". We continue to tromp through life learning to live without her and the lessons it brings. We continue to search for silver threads in all of it. We miss her. We miss her terribly. I can't even begin to make you understand how much we miss her. Unless you've experienced it, you can't even begin to imagine it. Trust me, you can't ... nor do you want to.

Specific Prayers:
~For Lance to continue to grow physically, emotionally, and foremostly, spiritually.
~That Lance continue to be compassionate, helpful, and loving.
~That our family be able to understand all that God is teaching us through Rachel's life and her death and that we all grow deeper in our spirituality in Jesus Christ.

CANCER SUCKS!!!!!

Tuesday, September 25, 2007 7:15 AM CDT

We were watching television last night. It was America's Funniest Home Videos and it was their $250,000 give-away. They were filming in Disney World. Towards the end of the show, Mickey Mouse was on with the host and my mind said, "Somebody go get Rachel! Mickey Mouse is on!" What came out of my mouth was, "Huh." It was a displaced, "Huh." It shouldn't have been there. Both Mark and Blake looked at me strangely. I said, "You'll never believe what I just about said." I told them and Blake looked at me lovingly and said, "Oh, Mom." "Yeah, I know," I answered and shook my head.

There are still times that I forget that she's not here. There are still those times that I drift back to what was. There are still those times that I pull out five dinner plates.

Before going to sleep last night, Mark and I were talking ... about her. And as he so poignantly put it, "She's not here." No, no she isn't. She isn't here. I rejoice for her in that she is with Jesus. I rejoice that she's not having to deal with cancer anymore. I know that if given the choice she would stay right where she's at. But that doesn't make it any easier or any better. We miss her. We miss every darn thing about her. I've always said that grieving is such a selfish process and the past few months have totally proved that statement to be true. There are just so many "I's" about grieving. And, yet, it's a selfish process we all go through.

It's a lonely place. Nobody knows what you're going through except another parent who has lost a child. And even then, it's different. The circumstances are different. The reasons are different. The time leading up to the death is different. How many other people have had to walk the cancer walk for five years with their child and then watch them die? Some, but not many. It's an exclusive group we never wanted to be a part of.

Now we see her only in our dreams. Now the smile and laughter only exists in our dreams and on video tape. The dreams are few and far between and we can't control what happens in them. Last night I was frustrated with a nurse at a different hospital who just didn't understand what I needed to access Rachel's port. When she did finally understand and stopped bringing me Epi pens, she was bringing me huge sizes of access needles. When she did bring the right size she was thoroughly scared to even open the package because she'd never accessed a port before. "I'll be doing the accessing," I replied to her and you could physically see her distress leaving her. "My mommy is the only person I let access me," Rachel said. "She does it all the time and I bet she's very good at it," the nurse said to Rachel. Rachel beamed and replied, "Oh, yes!" Only in our dreams do we see the blonde hair, the shining blue eyes, the smile that stretches from ear-to-ear and the tiny little voice that can melt a heart. But we can't control the dreams.

We can't feel the hugs that used to wrap around our necks. We can't feel her lips brush across our face as she kissed us or hear the whispered "I love you's". We can't giggle as she used her eyelashes to butterfly kiss our cheeks. We can't stroke her back as we hold her or rub her head--hair or no hair. We can't help her brush and floss her teeth or get clothes out of closets too high for her reach. No, we're left with leaving flowers on an unmarked mound of dirt in a place called a cemetery.

It's a lonely place. Most people experience losing their parents at some point in their life. Many less experience the loss of a child. And the two can't even begin to be compared. "Do you have other children besides your two boys?" the orthodontic assistant asked me yesterday. "Yes, I have three children. I also have a daughter," I answered. "Is your daughter the oldest?" she inquired. "No," Blake answered, "I am." And the subject was dropped. I have three children. I will always have three children. If pushed, I will say that I have the two boys here and a daughter in heaven or in the arms of Jesus or whatever comes at that particular time. If they ask more I'll tell them. If not, fine. But no matter what, I have three children. I raised three children for seven years. I will not turn my back on that. Ever. I don't care if it's uncomfortable or weird or what-have-you. Why is it uncomfortable? Why is it weird? Death is a part of life. People die. Children die. Why not admit that? Because it may make people feel uncomfortable? So what. Death is a part of life. Deal with it or don't ask. If people don't want the truth then I guess they shouldn't ask questions with potentially "acidic" answers. "How are you today?" "Oh, I'm just DANDY!" :-P

Specific Prayers:
~That our family continue to walk forward through grief and that it not last overly long.

Saturday, September 22, 2007 6:07 PM CDT

It's been a week of tears. They seem to come from nowhere. The faucet gets turned on and there doesn't seem to be a shutoff valve. I'm tired of it.

It may be a song on the radio or a plaque in a store. It may be something someone said, a picture of a blond-headed little girl, or just thoughts running through my head. It sucks.

Lance asked for me to put magnets on the back of wallet sized pictures of Rachel so that he could put them in his desk. Now other kids want them, too. Don't think I have enough school pictures to do that. I'll come up with something if he says something about it again.

I continue to wonder if I'm going to have to change my screen saver. It scrolls through all of the pictures that I have on my computer from my camera. The still photos that I have of her displayed in our home don't bother me. They are just there. I'm used to them. They don't change. Those pictures have been there since the day I got them ... for some of them it's been many years. They don't instill the heartache. But, the pictures that come up on my screen saver evoke memories of times spent with her. It will catch me off guard. It can take my breath away. The memories will flood over me and the tears will trickle. If the computer had been shut off or if the screen saver was something else, I would've walked in and out of my office without thinking about her. But the way it is now can stop me in my tracks. I may have to stop doing that to myself by changing the screen saver. Or remembering to shut off my monitor when I leave the room!

Blake got braces on his teeth and Lance got an expander put in. We are hoping to avoid some issues with crooked teeth by putting an expander in. Blake is pretty sore and is living on a soft food diet. Lance thinks his is pretty cool and won't let me forget to expand his expander everyday! He was able to choose the color and chose a purple and pink tie-dyed color in memory of his sister. That made me laugh. It's pretty cool looking. They are both learning to re-eat and Lance is even needing to learn to re-talk. He's kinda lisping right now with it. He laughs at himself. Blake is looking at two years right now and Lance is looking at around four months with the expander. We'll see how it all goes. This is an all new experience for us as neither Mark nor I had braces.

We've now lived an entire season (summer) without her. It's been the strangest season ever. As fall starts tomorrow, it seems as if it's the end. The end of what, I don't know. It's just the end. The beginning of the end of the beginning? I really don't know. It's something I just can't put my finger on. I just know that things are changing and I'm still crying. I really want the tears to stop coming without thinking. The other night at a quilt meeting, I was talking about my mom and I cried. Then I talked about Rachel and I cried. I didn't want to cry over either. Yet, there I was. I want that to stop. I want to be able to have a better handle on my emotions. I don't want to cry at the drop of a hat. I just want to be able to remember her and to talk about her without crying. I want that to come. I want it to come soon. I don't know if that ever comes, though. And if it does, will I feel guilty? A mother's guilt. Nothing to be guilty over, but it's still there.

And so another season begins. A season of change. A season that comes before winter. I'm already in winter. I don't much like winter. I'm not looking forward to what lies ahead. I'm not looking forward to continuing in the walk of grief. Can we just skip winter? Can we just skip grief?

I wish it were just that simple.

Specific Prayers:
~For our family as we continue on the journey through grief.

CANCER SUCKS!!!!

Sunday, September 16, 2007 6:47 PM CDT

We just returned from a weekend "up north" at "the cabin" (actually it's our good friend's parent's house, but they call it the cabin). We went up there with "My Tammy" and her husband and two children. We had a nice, relaxing time. Lance caught fish which we promptly ate for supper last night.

I found that I didn't think about Rachel as much as I do on a "normal" day at home. There are no memories of Rachel there. There are no reminders. Yes, there are pictures of her, but they aren't front and center like they are at home. And, truthfully, it isn't the pictures that do it. It's the daily living.

With no memories of her at the cabin, as she never did get go, there was nothing to trigger thoughts of her. Oh, we talked about her, but I found that I went HOURS without thinking about her versus minutes like at home. It kinda shocked me when I first realized that I had gone about three hours since last thinking about her--that was a first. It was strange, but it was okay.

Rachel would've loved it there. She would've loved going fishing. She would've loved being with Emme and AJ. She would've loved riding on "Uncle" Jeff's shoulders and being taller than anyone else in the world (Jeff is quite tall). She would've loved Tammy spoiling her. She would've loved being outdoors. She would've loved the fire. I don't think there was anything about being up there that she wouldn't have liked. But, she wasn't there.

More memories being made without her. That, in and of itself, is hard to grasp, too. The fact that we are making memories without Rachel in them because she died, and not because she's at the hospital, is hard to take. Yet, there is no way around that one. No way at all. Unless we hermit ourselves up, I guess. And that's not going to happen. Life is meant to be lived. And live it is exactly what we will do.

Another week stretches in front of us. Another weekend we survived without her. Many giggles, smiles, and lots of laughter were done without her. Yes, life still goes on ... even if at times you wish it wouldn't.

Specific Prayers:
~Thankfulness for a safe and fun-filled weekend with friends we consider family.
~Thankfulness for good memories being made even without Rachel.
~Thankfulness for more time between thoughts of Rachel.
~That we continue to travel forward through this horrible emotion called grief.

CANCER SUCKS!!!!

Saturday, September 8, 2007 10:01 AM CDT

Since Rachel’s death three months ago today, I have read several books on Heaven written by people who have been pronounced clinically dead and then, obviously, come back to life. There are similarities to the stories, but all are different. There is no way to prove what they have written is correct and there is no way to disprove it. The scriptures don’t give many details about Heaven. The one thing they all certainly have in common with the scriptures is that it is a glorious place and that the Lord dwells there. There is one book, though, that has given me great comfort over the rest of them. Again, I can’t prove or disprove it, but I like how it makes me feel about the tragedy of death that is surrounding us.

This book is called “Embraced By The Light” by Betty Eadie (although not spelled the same, her last name is pronounced the same as my maiden name). Again, I can’t prove or disprove anything that she has written about her supposed time in Heaven. The one event that I find very interesting is where the spirits go to spend time on earth.

According to Betty’s account, we were all spirits in Heaven before we came to earth. We formed friendships with each other and helped each other to gain more knowledge. Some of us needed to come to earth to gain knowledge (learn lessons) while other spirits are wiser and don’t need to come here. Some of our more wiser spirit friends will come to earth for a short period to help their less knowledgeable spirit friends to grow. Decisions such as who are parents will be, who are friends will be, diseases we will have, and often even how we will die are chosen by us before we even enter a fetus’ body at any time during the pregnancy or even right at birth. All of it for the attainment of knowledge.

Ever feel when you’ve met someone like you’ve met them before? Like you’ve known this person forever yet you know you haven’t? We sometimes say, “Oh, we have kindred spirits.” There maybe something much more to that than we really know. According to Betty, that’s because our spirits DID know one another and were probably great friends before we entered this dimension.

This book brought back a vivid memory for me. Soon after Rachel was diagnosed, I brought her to a homeopath whom my mother had been seeing. My mom went with us. As we sat there in his office, he first “doctored” with my mom and then he turned to Rachel, who was two at the time. He touched her hand and his head shot up and he looked deep into her eyes. Then he announced, “She has a very old soul—very wise.” I looked at him with naïve interest, not understanding what he was saying. He immediately went on to “doctor” Rachel. During her session, he held my hand and then looked around at the three of us smiling. When we were finished he said, “The three of you have a very strong connection. You have been connected to one another for eons. Rachel is the wise one.” I thought it all sounded very “new agey” and put it out of my mind—for a while, at least.

Several more times during Rachel’s life, I was told, “She has an old soul.” Each time I thought of that visit to the homeopath. I do believe that all of us have different gifts and that some do have the gift of “psychic”, if you will, to many varying degrees. And then I read this book.

To say that my mom, Rachel, and myself have a close connection is really a no-brainer. To think that we had a close connection in another dimension is heart-warming. I also happen to look like my mom and Rachel looks like me. If it’s true, to know that both my mom and Rachel CHOSE to have cancer, that they CHOSE to suffer all of those cancer treatments, that they CHOSE to die when they did all for the attainment of knowledge of others … well, first off, that is just “so Mom” and also it just makes everything much more okay. I hope I’ve chosen to just die peacefully in my sleep of absolutely nothing (yeah, I’m kinda selfish that way).

“Rachel’s the wise one.” She’s also the one that was only here for seven years. She’s also the one that we didn’t plan on having—she showed up on her own accord, so to speak. According to this book, she’s the one that didn’t need the knowledge. Makes sense if she’s the wise one. She just came to help some of us slower ones along. Probably means I’m going to live to be 110. Ugh.

So, even though I can’t prove or disprove anything with scripture, the thought of being friends before our time on earth with those whom I’ve chosen to be close with now is extremely exciting. The thought of us choosing our ailments and the way we die is extremely calming. The knowledge that we will be with them again is the only thing that gets us through this—and that one I can prove with scripture!!

All of the books I’ve read talk about Heaven as a glorious place. A place where our loved ones that have died are at. A place where everyone is singing praises to God in the most glorious voices with the most beautiful music you have ever heard. A place where God is. It is a place I want to go to. And I know there I will find my mother and my very sweet, very loved, very wise daughter.

“For God so loved the world that he gave his one and only Son, for whosoever believes in him shall not perish but have everlasting life.” John 3:16

Specific Prayers:
~Extreme thankfulness for the belief in Jesus Christ to bring us eternal life.
~For calmness and understanding as we walk through grief.
~For the health of our family.

And, yes, Kristy, CANCER SUCKS!!! :-)

Tuesday, September 4, 2007 9:02 AM CDT

Mark took Blake to the bus this morning after a flurry of activity trying to find his schedule (Mom's fault as I took his schedule so I could email all of his teachers and I didn't put it back in his backpack--gasp!). Lance and I had a leisurely breakfast and then I rode Blake's bike down to the end of the driveway with Lance so that Blake could ride it back this afternoon. I walked back up the driveway after Lance got on the bus. I rounded the corner and the house loomed in the morning sun. Except for the birds chirping busily, it was quiet. The house looked ... oh, I don't know ... it looked solitude. Can solitude look like something? I think it can. I think the house looked like it. I was thinking of Rachel as I rounded the bend in the driveway. There's an ache of not having a little girl, her, anymore. The house echoed that ache. It is not emptiness, for our lives are not empty. It is not a lack of completeness for I am complete without anyone--Christ took care of that one. I guess it's just a longing. A longing for something that I can no longer have. It just makes you want it more. Kinda like being on a diet ... you can't have that piece of cake. Heck, even if you don't like cake if you're told you can't have it, you want it!

Solitude, acheness, quiet, longing. Yeah, those words work. The house won't be that way for long, though! Mark's nephew and his wife need daycare for the next three days. So, I'm having baby Logan! Logan was born the day after Rachel's funeral. His daddy was one of Rachel's pallbearers. Logan and I are going to have some fun together ... as much fun as you can have with an eleven-week-old, I guess! I see baby drool, toothless grins, and few squeels in my very near future (how's about an hour for you?).

Yes, we're thinking about her today. But, that's really no different than any other day. She is thought about SO much. She was a part of our daily lives. You don't just shut that off. I don't think an hour goes by that she doesn't enter our minds at some level. It's the way it is. I wonder if that will ever change? I'm really looking forward to getting farther and farther away from this. To not have it sting so bad. I still run into people (I did just Sunday), who hadn't heard that she died. Then the wound opens up almost as fresh as in the first weeks. The tears flow. It sucks.

But today, although the first day of school, will be different all on it's own accord just because of little Logan. It will be okay. We will be okay. I will be okay. We will be that, even though it will never be okay and we will never be okay. It will never be fine and we will never be fine. Does that make any sense at all??? I will never be okay, but I'm okay. I will never be fine, yet I'm fine. Totally weird, totally true. Grief ... what a horrible emotion.

Specific Prayers:
~For continued support from God, friends, family, and complete strangers as we continue to walk Rachel's Road.
~That Blake and Lance have a wonderful first day of school.

Friday, August 31, 2007 10:02 AM CDT

Something written in the guestbook triggered some thoughts for me the other day. Things such as the collapsed bridge here in Minneapolis, the flooding in southeastern Minnesota, hurricane Katrina, hurricane Andrew, 9/11, the early deaths of parents … the suffering and deaths of young children from cancer. All the tragedies and sorrows that can fill our lives whether directly or indirectly. So many powerful events that rage sadness and anger, and send us looking for answers.

So where do we turn? What are the correct questions to ask? “How can God do this to us???” is one that we hear so often. I think that only those that don’t truly understand who God is ask that question. If you look at the attributes of God that are in the Bible, merciless, cruel, and spiteful are not part of the list. We all know that those are traits of Satan, so why, as a whole, do we not question why HE’S doing this to us? Because we already know the answer? Because we already know that he’s trying to turn us away from God? Because we already know the powerful hold he has on us? Because we already know we’re sinners and fall very short of the glory of God? Instead of looking upward in anger and with pointed fingers screaming, “WHY?”, how come we don’t look downward in anger and with pointed fingers and scream, “WHY?” Is it because if we look inward we know the answer? We’re sinners. Plain and simple. We’re icky, dirty sinners not worthy of God. Yet, we think he should fix EVERYTHING! We think he should protect us from EVERYTHING! We think we are so wonderful that nothing bad should ever happen to our race. Hmmmmmmmmmm …. where is that in the Bible??? What have we EVER done for God that he owes us anything? Can any of us honestly say that we haven’t failed God? So why do we expect our lives to be a bed of roses? There is sin in the world. The “S” word—Satan—brings more “s” words—sin, sorrow, sadness. Satan’s primary endeavor is to destroy faith in the world. According to Billy Graham in his book “Angels: God’s Secret Agents”, “Isaiah 13:12-14 clearly points up Satan’s objectives: he works to bring about the downfall of nations, to corrupt moral standards and to waste human resources. Corrupting society’s order, he wants to prevent the attainment of order, and to shake the kingdoms of our God. He uses his destructive power to create havoc, fire, flood, earthquake, storm, pestilence, disease and the devastation of peoples and nations.”


Another question that I hear, and have been guilty of asking myself, is “Why does God allow this?” Again, Satan is at the heart of it. In his warfare against God, Satan uses the human race, which God created and loved. “In the beginning …,” is where we must go back to. In the beginning, God told Adam to not eat from the tree of the knowledge of good and evil and if he did so that he would surely die (Genesis 2:9, 17). As we all well know, the serpent—good ol’ Satan himself—“encouraged” Eve to eat of this very tree from the middle of the Garden of Eden. My question is, “Why didn’t Adam stop her?” He was there. “When the woman saw that the fruit of the tree was good for food and pleasing to the eye, and also desirable for gaining wisdom, she took some and ate it. She also gave some to her husband, who was with her, and he ate it.” (Genesis 3:6) WHAT??? Guess they were BOTH fooled by the serpent into eating that food. Because of this, curses were put on the serpent, on the woman, and on the man. The serpents curse was that there would now be enmity (mutual hatred) between the woman and all of her offspring—in other words, mankind (Genesis 3:15). The woman’s curse is pain in childbirth and though we will desire to control our husbands, that our husbands will rule over us (Genesis 3:16). It’s in the beginning, Gals. That’s where it started. That’s why men are more prominent in the Bible. That’s why men have the status they have to this day. Men didn’t make it that way … God did. We were put into a state of subjection. The whole sex, which was created equal with man, is, for sin, made inferior, and forbidden to usurp authority. (1 Timothy 2:11) The entrance of sin has made that duty a punishment, which otherwise it would not have been. We only have ourselves to blame. Eve ate the apple. But, Guys, before you sit there nodding your heads with stupid grins on your faces for too long, lets see what you’re cursed with. The man’s curse is that the ground is cursed and only through painful toil will you eat of it. The ground will produce thorns and thistles and you will eat the plants of the field. It is by the sweat of your brow that you will eat your food. (Genesis 3:17-19) But, ALSO, there is still another curse put upon Adam. That curse is death.

Before the “apple incident”, human kind was to live forever. For in the middle of the garden there were two trees—the tree of life and the tree of the knowledge of good and evil (Genesis 2:9). After the “incident”, God cursed Adam by saying, “By the sweat of your brow you will eat your food until you return to the ground, since from it you were taken; for dust you are and to dust you will return.” (Genesis 3:19) “And the Lord God said, ‘The man has now become like one of us, knowing good and evil. He must not be allowed to reach out his hand and take also from the tree of life and eat, and live forever.’ So the Lord God banished him from the Garden of Eden to work the ground from which he had been taken. After he drove the man out, he placed on the east side of the Garden of Eden cherubim and a flaming sword flashing back and forth to guard the way to the tree of life.” (Genesis 3:22-24) Death. All because Adam ate the apple.

Death. Suffering. Trials. Sadness. Tragedy. All because of one eaten apple. All because of one simple instruction that man (human kind) couldn’t keep. Was this the original plan? Did the original plan change? Did Lucifer (Satan) change everything when he defected? When we punish our children for a “crime”, do we not allow them to suffer? What comes from our mouths then? “He deserved it.” “She made her bed, now she has to lie in it.” “He needs to suffer the punishment.” “Don’t do the crime if you can’t do the time.” We are totally able to justify it. We close our ears to their pleas of unfairness, sufferings, and missed social opportunities and easily tell them that life isn’t fair and that they had better think before they do something that stupid again. But, when we are suffering and crying out, we expect different answers. Why is that?

Billy Graham also reminds us that “Matthew 13:24-30, 36-43, tells of The Parable of the Tares and Wheat (it’s also known as The Parable of the Weeds). Both tares (weeds) and wheat had been allowed to grow together until the harvest, but then the reapers were to gather them up in bundles. The weeds were to be burned; the wheat gathered. We often wonder why God permits so much sin in the world, why He withholds His right arm of judgment. Why doesn’t God put an end to sin now? We can give an answer from this text where Jesus said, “Let both grow together,” the evil with the good (verse 20). If we were to try to wipe all evil from the face of the earth, who could count on justice? Pure justice does not exist here, because everyone is guilty, including the judges who sit in judgment. We are all guilty of sin.”

We think that because we haven’t murdered anyone that we aren’t bad people. “Hey, I haven’t MURDERED anyone!” But God doesn’t prioritize sin the way we human’s do. You are not sent to prison for having an affair with someone. You are not sent to prison for lying to your kids, spouse, neighbor, or friend. You are not sent to prison for not loving your neighbor as yourself. No, we’re not. Only for murder and stealing. Because of this, we tend to prioritize sin. It’s worse to murder than to tell a lie. Is it really? Maybe here in “our world”, but how does God prioritize sin? Sin is sin. No sin is worse than the next … it’s all bad. It’s all sin. Murder and adultery … same. Adultery and stealing … same. Not loving your neighbor as yourself and murder … same. Not honoring your parents and misusing God’s name … same. All sin. All worth punishment. Eating the apple … sin. We are all guilty of sin. Satan has great power. He is cunning and clever, having set himself against God and His people. He will do everything in his power to hold people captive in sin and to drag them down to the prison of eternal separation from God. Billy Graham also says, “Satan never yields an inch, nor does he ever pause in his opposition to the plan of God to redeem the “cosmos” from his control. He forever tries to discredit the truthfulness of the Word of God; he coaxes men to deny the authority of God; and he persuades the world to wallow in the deluding comforts of sin. Sin is the frightful fact in our world. It writes its ruin in vice and lust, in the convulsions of war, in selfishness and sorrow, and in broken hearts and lost souls. It remains as the tragedy of the universe and the tool of Satan to blunt or destroy the works of God.”

I don’t think Rachel died because of my sin. I think she died because of sin, period. Disease is from sin. Therefore, cancer is from sin. It’s kind of a vicious circle, isn’t it? Yet, it all makes sense. So, as far as God “allowing” bad things to happen, maybe it’s just all a part of it, all a part of the cycle, and really has less to do with him allowing it then it just being the process.

Billy Graham continues with, “We face many perplexing questions today, such as: Why does God permit evil? Why doesn’t God intervene and punish sin? Why does God allow disease? Why does God permit catastrophe? Yet God’s timing is precise! Angle hosts who witness everything that transpires in our world are not free to bear up the righteous and deliver the oppressed until God gives the signal. One day He will. Christ has reminded us that the wheat and the tares, the righteous and the unrighteous, are to grow in the field together until the harvest time when the holy angels gather God’s elect and bring them into His kingdom.

We are told, for example, “Do not give the devil a foothold “ (Ephesians 4:27). In other words, don’t leave any vacant places in your heart for him. The apostle Peter taught, “Be sober, be vigilant; because your adversary the devil, as a roaring lion, walketh about, seeking whom he may devour” (1 Peter 5:8). Thus, we cannot be too careful. James says, “Resist the devil, and he will flee from you: (James 4:7).

We, who are troubled, confused, fearful, frustrated Christians need God to open our eyes this very moment. As Vance Havner says, “Our primary problem is not light, but sight. Light is of no value to a blind man. Reading books galore on the subject will not reveal the angels unless our eyes are touched by faith.”

What faith Rachel had. She had so many angels.

Hebrews 11 contains a long list of men and women of faith. For most of them God performed miracles, delivering them from disease, calamity, accidents and even death. Angels helped these great men and women to subdue kingdoms, obtain promises, stop the mouths of lions, quench the violence of fire, escape the edge of the sword, and when they were weak, stand with the help of angels to defeat entire armies. But things change in verse 35, with the opening words, “and others were tortured.” Those now mentioned were of equal faith and courage yet they had to endure the trial of cruel mockings and scourings. They suffered bonds and imprisonment. They were stoned, they were sawed in two, they were slain with the sword. They wandered about in goatskins, being destitute, afflicted and tormented. Time after time they must have called on God to send His mighty angels to help. No delivering angel came. They suffered and endured almost as though there were no God.

In the sufferings and death of these great saints not physically delivered, God had a mysterious plan, and was performing His will. Knowing this, they suffered and died by faith. Jesus even asked the night before his crucifixion, “If it be possible let this cup pass from me” (Matthew 26:39), and we all know how that turned out. The latter part of Hebrews 11 indicates that those who received no visible help in answer to prayer will have a far greater heavenly reward because they endured by “faith” alone. But having died, they did enjoy the ministry of angels who then escorted their immortal souls to the throne of God. The Christian should never consider death a tragedy. Rather he should see it as angels do: They realize that joy should mark the journey from time to eternity.

Yes, I’m sure Rachel’s angels were there celebrating as Rachel’s soul passed into a different dimension. A dimension that only a lucky few have been able to witness in this life time. A dimension that we all wonder about. A dimension where God is. A dimension where not everyone will reside in everlasting life.

Satan has given us the “ifs” of death listed out by Billy Graham. “Those “ifs” are being injected into the minds of people today: “if” you live a good life, “if” you do what is right, “if” you go to church, “if” you work for the benefit of others—if, if, if. But the Bible teaches that these “ifs” are not enough to meet God’s requirements for salvation. Our good works and intentions are not enough. Jesus said, “Ye must be born again” (John 3:7). Only when we turn to Christ in faith and trust, confessing our sins to Him and seeking His forgiveness, can we be assured of our salvation. Satan will do all in his power to make us trust ourselves instead of Christ. But only Christ can save us—and He will, if we will commit our lives to Him and trust His work on the cross for our salvation.”

I heard a radio program just a week or so before Rachel died that was talking about this very thing. The woman who was speaking said something to the affect of if you don’t have Jesus truly in your heart, Satan will not only help you get dressed for church on Sunday morning, he’ll even go with you. How’s that for a visual? I truly think that we’re in for a rude awakening on the Day of Reckoning. God is recording not only the words and actions but all the thoughts and intents of our hearts. Someday you and I will have to give an account, and at that time our final destiny will be determined by whether we have received or rejected Jesus.

Thousands of wicked men have lived evil lives and perpetrated their evil designs upon others without seeming to pay any penalty for their misdeeds in this life. However, the Bible says that a time will come when the crooked places will be made straight (Isaiah 45:2). Reason alone should tell us that there must come a time when God will call upon the Hitlers and the Idi Amins of the world for an accounting. In the great day of God’s judgment men will call on Him for mercy, but it will be too late. In that day if men were to seek God, they would not be able to find Him. It would be too late. They could cry out for angels to deliver them, but it would be of no avail.

To those who face death in Christ it is a glorious experience. The Bible guarantees every believer an escorted journey into the presence of Christ by the holy angels. The angelic emissaries of the Lord are often sent not only to catch away the redeemed of the Lord at death, but also to give hope and joy to those who remain, and to sustain them in their loss. He has promised to give “the oil of joy for mourning, the garment expressive of praise instead of a heavy, burdened and failing spirit …”

So we continue to turn to God through this grieving process even if there is no pat and easy answer to any of our questions about “Why?”. When looked at in all of it’s vastness, how and when one dies is really a trivial thing. What matters the most is where we’re going afterwards. What did we do in this lifetime before our death that will guarantee us a life after death is more what it’s about than the actual dieing process. Whether we suffered or not, whether we lived a long life or not, whether we accomplished everything we wanted to or not, whether we remember our grandparents or not or whether they saw us or not … none of it is part of the equation. It’s all about what each of us did with that time allotted to us.

Are you ready to face life? Are you ready to face death? No one is truly ready to die who has not learned to live for the glory of God. You can put your confidence in Jesus because He died for you, and in that last moment—the greatest crisis of all—He will have His angels gather you in their arms to carry you gloriously, wonderfully into heaven. The wonders, beauties, splendor and grandeur of heaven will be yours. You will be surrounded by these heavenly messengers sent by God to bring you home where you may rest from your labors, though the honor of your works will follow you (Revelation 14:13). Sin is at the cause of everything horrific and sad that we know. Sin is the answer to all of the questions we have. Sin is the second largest thing in the world; only the love of God is greater.

“Precious in the sight of the Lord is the death of his saints” (Psalm 116:15). Oh, Rachel, how precious you must be.

Specific Prayers:
~Thankfulness for knowing that Rachel is with God.
~Thankfulness for Rachel being able to tell us about the angels several weeks before her death.
~Thankfulness for God's word.

Wednesday, August 29, 2007 9:27 AM CDT

School starts next week. "My" Tammy asked me last night if I was ready for that. Truthfully, no. But not because of the reasons you might think. I'm just plain not ready for school to start. I like having my kids around. I like the spontaneity of summer. I like not having to worry if they're in bed at a certain hour. I like not having to deal with homework. I like being able to be gone in the middle of the week without having to worry about missing school. I just like summer.

The beginning of school also ushers in the end of summer. I'm just SO not ready for that! I LOVE summer!! I love being able to run outside my house without having to first put on a pair of shoes or a coat. I love walking barefoot through the grass. I love the camaraderie that summer brings. I love feeling my skin soak up the sun. I love hearing my kids on their 4-wheelers and dirt bikes, their laughter filling the air as they play outside whether it's in the sprinkler or with water guns, playing basketball or practicing their golf or baseball, or swinging on the tire swing or rushing down the slides. Winter kinda evokes a hush and a stillness that summer just doesn't have. No, I love summer and I'm not ready for it to end.

As far as school starting and me being without the kids, that's something that has been happening for two years. I'm not as afraid of it as I was two months ago. I have SO much to do that I'm not afraid of just sitting around crying with idle time on my hands. Me and idle time? Those two words just don't belong in the same sentence together! They haven't for years and they aren't going to start now. Trust me.

I think the worst part of school being back is actually the orientations. I broke down--much to Blake's horror, I might add--at his orientation Tuesday night. One of his teachers was asking him, "How was your summer, Blake?" "Oh, it was okay but not great." "BLAKE! What do you mean your summer wasn't great?!?!" I looked at her and said, "His sister died this summer." For some reason, the waterworks started and tears continued to trickle down my face the rest of the time we talked to this teacher. I couldn't stop them! "Oh, MOM! Are you crying???" "It's okay if Mom cries," I said. "It sure is," his teacher replied. "Don't worry about it." But, poor Blake, just stood there looking at me shaking his head with this weird grin on his face. He was half-way between knowing that this was okay and being totally embarrassed that his mom was crying in front of his teacher. We got through it and Blake's stupid mom never did it again that evening!

Tonight is Lance's open house for his school. This is the one that I'm dreading. This will be my first time back since she's died. Tammy mentioned walking by the second grade classrooms--where Rachel would be now--would be hard. I'm thinking that's not where I'm going to have my problems. There are no memories of Rachel in those classrooms. It's her first grade classroom that holds the memories right now. And her kindergarten classroom. We have to walk by Ms. Cummings classroom no matter what. To get to Lance's classroom, that's a given. Seeing Ms. Cummings, Rachel's kindergarten teacher and her first grade tutor, will be both hard and good. With her busy summer school schedule, I haven't seen her since the funeral--although she's left her markings at Rachel's grave site. The third grade classrooms are right across from the first grade classrooms, so going to Lance's room tonight will bring us right up to the memories of last year. Seeing Miss Tyler, Rachel's first grade teacher, isn't going to be the easiest thing, either.

The guidance counselor called me this morning and said they would like to have a picture of Rachel up for the orientation. She feels that many kids probably won't know about it (being that she died the day after school was out) and that they need to know. I agree with her.

It's going to be an interesting time. We'll make it through it, but I'll probably cry ... a lot. Lance will be so disgusted with me! Oh, well. Having parents means you get embarrassed, right? May as well start 'em early!!! I'm really not looking forward this. I'm really not. Seeing everyone is going to be really hard. Walking in with only one child is going to be really hard. Only having to go to one child's classroom is going to be really hard. Seeing Rachel's little friends is going to be really hard. Seeing her classroom and locker from last year is going to be really hard. I really can't think of one thing that's going to be easy about tonight. I guess Lance meeting his teacher, finding his desk and locker, and putting all of his stuff away will be okay, but even that's not going to be easy.

So we cross another bridge tonight. Another first. I really hate them. There's nothing about this grieving process that is fun or okay. The entire situation just really stinks. I wish I could be celebrating for her, but I'm just not there. I don't know if I ever will be.

Specific Prayers:
~For the strength to make it stoically through Lance's orientation.
~Thank God that Mark, Blake, and Lance didn't get sick.
~Thank God that Jodi is feeling better.

CANCER SUCKS!!!

Thursday, August 23, 2007 0:15 AM CDT

Well ... it happened. We were sitting in the doctor's office getting Blake's allergy shot when someone asked me how many children I had. I was speechless. I didn't know what to say. I had thought about this moment quite a bit but when it actually came, the "pancake answer" I had just didn't flow from my lips. If I say I have two children, I feel as if I'm abandoning Rachel. I have three children ... they just aren't all with me at this time. If I say I have three children and the questions start coming, then I have to say that my daughter is dead. That's kinda weird, too. My mind was all a-jumble. I finally blurted out, "I have two children living with me". There, that should pacify. "Oh, do you have an older one at college?" Oh, great. I didn't know what to say. I mean, I didn't exactly feel the need to tell this person my story. I didn't know how to get around it. I mumbled, I fumbled, and I stumbled over my words. Finally I said, "You know, you're the first person to ask me that question and I really don't know how to answer it. My seven-year-old daughter just passed away this summer." She looked me square in the eye and said, "I know who you are". Great. And you would be???? Ended up she knows a relative of ours and her kids go to the same elementary school as ours.

Even after that experience, I'm still not sure how I'll answer the next person who asks. Maybe each time will be different. I don't know. I don't think there is a good answer. Because each one sucks. Each one admits that Rachel is no longer here. Each one testifies that our house is emptier than it should be. Each one screams that life is full of tragedy and unfairness. Each answer is wrong. Just plain wrong.

The reunion went fine. Lots of thoughts about her, lots of conversations about her, some prayers for her, and, of course, tears for her. One thing I did bring home from the reunion was illness. I've been feeling like I have been hit by a Mack truck since 3:00 am on Tuesday. Running a temperature of 102.0, chills, body aches, diarrhea ... fun stuff. I actually woke up Wednesday morning feeling great. My temperature was normal and no more body aches. Around 6:00 pm that all changed and the fever is back along with that feeling of being hit by a truck. I know it was potluck at the reunion, but this was one thing that didn't have to be shared! I've learned that at least one of my aunts, one of my cousins, my dad, and my step-mom all have had some form of it, too. Some people just had a fever and the aches. Some people added vomiting. Others had the diarrhea with it. What fun. I'm really hoping that I wake up tomorrow feeling great and that it doesn't come back. I'm up now because I couldn't sleep. Hopefully Mark, Blake, and Lance won't get it.

I've been having a lot of strange dreams lately. I've dreamed about my mom more this month than I have the entire two years she's been gone. It's quite strange. Night after night I'm dreaming about her. In each dream before this month she would tell me that she was still dead and that she was only here in spirit form just to help out in whatever "issue" was going on in my dream. Last week she told me that she was back to stay. I was rather upset because she said that Rachel wasn't coming back. I told her that her coming back now was going to cause a lot of chaos being that Dad was remarried and all. Why did she wait TWO YEARS to come back if she was coming back??? I was mad. Trust me. I was MAD. I was even madder that Rachel wasn't coming back. I told her that Rachel coming back would be a lot less chaotic than her coming back. But, no, Rachel wasn't coming back. Then, last night, she didn't say she was back for good but it was understood that she was. There were a lot of tears in my dream. I was crying an awful lot about Rachel. Lance was there drying my tears. I found that kinda funny when I woke up because he's the one who's always asking me if I'm crying (at a movie, over a story, about Rachel, etc.). At the end of the dream, Rachel was there with my Mom and they told me that the Rapture was coming very soon and that they were here to help us transition during the Rapture. Then I woke up. Strange. Very strange. Nice, though. I could go for that. Now.

You know, the Lord said that we should be prepared for his second coming because it was to be soon at hand. There's something about that word "soon" that I just don't like. I mean I don't know about you, but I don't consider over 2000 years "soon". I'm ready. Are you? I know it's coming ... and I think sooner than many people realize. I'm just thinking that soon should be this month rather than next. This year rather than next. Heck, today rather than tomorrow. Yeah, today sounds good.

But, since no one knows the day or the hour I guess we go on living our lives, dreaming dreams, putting one foot in front of the other, and learning to live without loved ones. Life does not stop. There are many things we don't have choices about. Rachel's death, my mom's death, Mark's dad's death ... all things we had no choice about. But, we can choose how we live each day. We have chosen since the beginning of Rachel's diagnosis to not mope and cry all of the time. Yes, there are times for that. Yes there are. Just not all of the time. We can choose to laugh, smile, and live life or we can choose to crawl under the covers, cry all day long, and let a bit of us die more and more each day. God never promised us a life with no trials. He did promise to be there for us during those times. We take our strength from him as he holds us close while the wind and the waves and the storms hurl against us. We were never promised a rose garden on this earth, but in Heaven if we only believe.

Specific Prayers:
~Thank God for letting me see Rachel in my dreams.
~Thank God for his gift of salvation.
~For the health of our family.
~That Jodi's temperature remain normal.

CANCER SUCKS!!!

Friday, August 17, 2007 7:51 AM CDT

We are giving thanks to God for his miracle of life. Yesterday morning at 11:01 and 11:04, Teagan Janelle Maloney and Delaney Ellen Maloney made their entrance into this harsh, cruel world via c-section at 38 weeks gestation. Teagan is 7 pounds 14 ounces and 19 1/4 inches long and Delaney is 6 pounds 9 ounces and 19 3/4 inches long. VERY nice sizes for twins!!! Both are doing well. Delaney is having a few issues with maintaining her blood sugars, but as of last evening was doing better with that. The Mommy, my sister, is doing very well, too. Daddy is still on oxygen. Tee hee!!!!

So ... I'm FINALLY an aunt by blood. I'm an auntie many times over on Mark's side of the family, but these are only the fourth and fifth grandchild on my side of the family with mine being the first three.

My mother made all three of my children these absolutely gorgeous white on white quilts all completely hand sewn. They've become a tradition and an heirloom in our family. But, with Mom no longer being here, I took it upon myself to make these quilts. As a matter of fact, two years ago when I found no white quilts in the cedar chest, I decided that if Grandma couldn't make quilts for her grandchildren, the next best person to do so would be Auntie ... that's me. Hmmmmmmmmmm ... better learn to quilt! Two months after my mom died, I was taking a beginners quilt class and learned why my mother had such a passion for quilting! I love it, too!! So, when my sister announced she was having twins, I got to work knowing that I had TWO blankets to make ... Mom never had to do THAT!!! I'm happy to announce that even with all that's gone on in our lives this year, two finished quilts were neatly tucked into gift bags and presented at the hospital. I'm not sure who's happier, me or my sister!! :-) Guess it doesn't matter. We both understand the signifigance of it, the meaning behind it, and the love that goes into them. I know that she cherishes them. And me ... well, I just need to hold a baby!!!!

Of course, they are beautiful as can be. They look nothing like Rachel at all and I was surprised at myself yesterday when I was relieved that they didn't look anything like her when she was a newborn. They may still end up having some things that resemble Rachel as they are cousins and Rachel did have quite a few of my characteristics, but I think that would be neat. But, they are there own unique individuals and they will look like Teagan and Delaney. Trust me, they already do!! They are fraternal twins and you can easily tell them apart ... at least at this point in time! Better look for a birth mark or something, though, just in case!!

So, we head into a family reunion with a bit of trepidation but also with happy news (and pictures!) on hand. We'll hit it head on and be just fine. We always are. As I told my aunt, "I'll probably cry if we talk about her, but that's okay. I'll probably cry if we DON'T talk about her so we may as well talk about her." You know, it's that damned-if-you-do-damned-if-you-don't syndrome. You just can't win. Either way I'll cry. But that's okay. It's not what's being said that is making me cry. I cry because I miss her. I cry because I know she'd be enjoying things at the place that I'm at. I cry because I want her back. I cry because my heart has a Rachel-shaped hole in it. I'm crying now and not a word has been spoken in this house about Rachel today. My own mind can be my worst enemy.

Onward ...

Specific Prayers:
~Thank God for the safe delivery of Teagan and Delaney.
~For the quick recovery of my sister, Sarah.
~For the health and safety of our entire family.
~To feel God's big, merciful, and loving arms around us as we, yet again, face another event without Rachel.

CANCER SUCKS!!!!

Saturday, August 11, 2007 4:59 PM CDT

It's been a hard week. She's just been everywhere this week. It seems that I'm always just a breath away from having tears roll down my cheeks at all times this week. It's certainly not getting any easier. Not yet.

We continue to live life, but that means doing things that she enjoyed doing. Therefore, we remember doing these things with her. It will take a while before we have memories of doing all of these things without her.

She enjoyed the Dakota County Fair. We've been there several times this week. She enjoyed Valleyfair (an amusement park). The boys and I were there on Friday. Rachel loved rides. The wilder, the better. All I can think about is how strange it is to be at these events without a stroller. We've had a stroller for SO many years that it feels naked to be without one. Also, this time, I got to go on rides because I wanted to not because I had to go with Rachel or I got to choose to stay off of a ride and not have to stay behind because Rachel was too small to go. We really did fill her life with LIFE. That is certainly something we're glad we did when she was able to.

It's still so hard to believe that she's gone. It's still so hard to believe that I'm going to have to die to see her again ... unless the Rapture hurries up and happens. A lifetime seems like an awfully long time to wait.

Specific Prayers:
~That the moments between thinking about her lengthen.
~For the health of our family.

CANCER SUCKS!!!

Monday, August 6, 2007 5:12 PM CDT

Another weekend lived without her. Another wedding we didn't get to see her dance at. Another stay in a hotel we didn't get to see her excitement about. Another swimming pool we didn't get to see her swim in.

We also didn't need a roll-away bed because four people fit in two queen-sized beds just fine. We didn't have to be in the pool with her because she was so short her head was barely above water. We didn't have to worry about her crawling in bed between us, or have to give her a bath. Sadly, life really is much simpler. I feel almost guilty writing that. Her stature made her dependant even though she didn't want to be. Her treatments made her tired which made her dependant even though she didn't want to be. Dependance means more work for the caregiver. Work that Mark and I would gladly sign up to do.

Mark's nephew got married this past weekend. While looking over the program before the wedding, I read the names of the people whom they had listed that the flowers up front were in memory of. Those people whom were unable to attend because they were no longer physically in this realm. Rachel was one of them. Tears trickled down my cheeks.

The dance started and the bride and groom danced together. Then the bride and her dad danced. The bride and her dad. Oh, yeah ... the bride and her dad. This daddy isn't going to have a bride to dance with. That was hard. The song didn't help. Don't ask me, I don't know which song it was right now but, trust me, it didn't help. I fought the tears. I fought them hard. My bottom lip trembled and it was all over with. I had to leave. The tears poured out and it really sucked. Of course, I recovered. Mark said that he couldn't look at me because he was having all he could do to keep from breaking down himself. The rest of the evening was fine.

No matter how hard you try to not think about her, she's there. We knew that she would've been out there dancing with her cousins. We knew that she would've been lifted up to grab the hearts filled with candy that hung from the ceiling just as other little girls were having done to them. We know she would've had blue lips from eating chocolate cake with black icing on it. We know she wouldn't have eaten hardly anything that was served for dinner except the bread. Strange how I still think about what Rachel will eat when I go through a line such as that. We know she would've enjoyed herself. We know she would've begged us to leave, though, so that she could go swimming again at the hotel ... which is exactly what we did. She wasn't there, yet she was everywhere.

We have received newsletters for Blake and Lance from their schools announcing all of the upcoming information that we will need for the start of school. Funny, Rachel didn't get one. She is still receiving mail, though. The local ski hill just sent her some stuff about season passes. I'm sure she'll need one. "Can I have Rachel's mail?" Lance asks. Sure. What the heck. I filled out my volunteer sheets for both schools. That's something I've never been able to do before. This is the first year EVER that I'm going to be able to volunteer on a consistant basis. Now that's going to be strange. I can now be the mother to my boys that cancer never allowed me to be.

Life is very different. She's not here. Yet, she's everywhere.

Specific Prayers:
~That we need not linger long in the deep pit of grief.
~To feel God's loving arms around us.
~That we continue to move forward with our lives not getting stuck in the past.
~That we be able to be the nurturing parents Blake and Lance still need us to be.


**Just a note about the bridge collapse. Several people have emailed me asking if we were anywhere near it and showing concern. I'm thankful to say that Mark and I were no where near the bridge when it collapsed. We were both at home. But, one of my girlfriends personally knows someone who survived the collapse as he is one of her husband's good friends. Also, sadly, another one of my girlfriends has a friend whose brother was killed in the collapse. He was the driver of the semi-truck that was on fire next to the schoolbus. I know those images have been shown all over the world. We are praising God for Matt's life and mourning Paul's. Mark's brother-in-law drove over that bridge that very morning and we would've been on that bridge Friday evening on our way up north to Mark's nephew's wedding. One just never knows what tomorrow will bring. As cancer has taught our family, you appreciate each and every day--every minute of it--because tomorrow is not promised. As Rachel taught our family, you live each moment to its' fullest because you may not get another chance. We may not understand losing someone in a tragic accident such as this, but we do understand loss. This is horrible and our hearts wrench for those who now have joined us in the group of people learning to live without loved ones.

CANCER SUCKS!!!

Thursday, August 2, 2007 7:54 AM CDT

The quietness of the morning fills me. It envelopes my soul. I feel stillness, warmth, peace ... God. I am happy. Yes, I am happy. Although I long for her--for Rachel--I know that I will see her again. This hasn't been a goodbye. This has been a see you later, Alligator, after while, Crocodile, situation. Oh, it hurts. It's very painful. But there is such hope. Hope of the promises we have been given. With that hope comes peace. Peace for today. Peace for tomorrow. Peace in knowing we'll all be together again. That peace comes from God.

I can't imagine having any other thoughts of death. To think that death would be it. That this life would be it. That would be a cruel joke. I look so forward to being with my Father in Heaven and all of my kindred spirits that are already there with Him. To think that I would never see Rachel again would be too much to bare.

Heaven. What a profound word. Webster says that heaven is "the expanse of space that seems to be over the earth like a dome". Interesting. Not my interpretation of heaven. Let's see. Webster's second definition says that heaven is often capitalized and it's "the dwelling place of the Deity and the joyful abode of the blessed dead". The blessed dead, huh? The definition continues on with "a spiritual state of everlasting communion with God". The third definition given is simply, "God". The fourth definition says that it's "a place or condition of utmost happiness".

The Bible says that Heaven is God's holy dwelling place(Deutoronomy 26:15) and that he has established his throne there ((Psalm 2:4, 103:19, 123:1). It says that God is the maker of Heaven (Genesis 14:19, 14:22, Psalm 115:15, 121:2), that he is there (Ecclesiastes 5:2), and that he will set up a kingdom that will never be destroyed, nor will it be left to another people. This kindgom will crush all other kingdoms and bring them to an end, but it will itself endure forever (Daniel 2:44). Both John the Baptist and Jesus Christ tell us that we should repent, for the kingdom of heaven is near (Matthew 3:2, 4:17). The Beatitudes teach that blessed are the poor in spirit, for theirs is the kingdom of heaven (Matthew 5:3) and blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven. (Matthew 5:10). Versus 11 and 12 continue by saying that we are blessed when people insult us, persecute us and falsely say all kinds of evil against us because of Jesus Christ. We should rejoice and be glad, because great is our reward in heaven.

Jesus goes on to tell us that unless our righteousness surpasses that of the Pharisees and the teachers of the law, we will certainly not enter the kingdom of heaven (Matthew 5:20). He also says that not everyone who says to me, "Lord, Lord," will enter the kingdom of heaven, but only he who does the will of his Father who is in heaven (Matthew 7:21). Jesus also said that unless we change and become like little children, that we will never enter the kingdom of heaven. Whoever humbles himself like a child is the greatest in the kingdom of heaven (Matthew 18:3-4).

So, how do we get to heaven? Do we just die and automatically go there? Is eternal life for everyone? According to scripture, it is not for everyone. The Bible says that God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. (John 3:16) Verse 17 tells us that God did not send his Son into the world to condemn the world, but to save the world through him. And verse 18 says that whoever believes in him is not condemned, but whoever does not believe stands condemned already because he has not believed in the name of God's one and only Son. Belief in Jesus Christ as your Lord and Savior is what it takes. Jesus, when answering a man about how to attain eternal life, also said that if we want to enter eternal life, we must obey the commandments. Do not murder, do not commit adultery, do not steal, do not give false testimony, honor your father and mother, and love your neighbor as yourself (Matthew 19:16-18). And that's where forgiveness comes in because we all fall short. That's repentance. "Repent, for the kingdom of heaven is near." Believe and repent. Eternal life will be yours.

What a promise! What a joy! How can that not make you happy? God's promise. God's gift. Salvation. So wondrous that we can't even behold it with our human minds. How I long to be there. How I long to be with Jesus. How I long to be with Rachel. Heaven. How perfect. How peaceful. How powerful. Yet, how painful. Heaven, when thought of as eternally is glorious. Yet, to get there means loss. Lost to everyone on earth. Loss of the life here on earth. Loss means heartache. Loss means agony. Loss means tears, questions, and pain. What an oxymoron. It's the assurance of eternal life, the claims of Jesus Christ, that make it liveable. Receiving Jesus Christ and God's free gift of salvation is the only thing that carries me through this very bumpy road ... Rachel's Road. It's the only thing that ever has.

Specific Prayers:
~Thankfulness for the peace that fills us.
~That those who are lost in this world find a way to be found.
~For the health of our family (Mark's been very sick with both a sinus and ear infection).
~That grief lose it's hold on us.

CANCER SUCKS!!!

Monday, July 30, 2007 11:24 AM CDT

For the first time in six years, nothing "horrible" happened around Mark's birthday. The forty's have not been kind to Mark. The day after he turned forty his baby girl was diagnosed with cancer. On his forty-fifth birthday, she's no longer here to celebrate with us. No longer here to chant that she wants to help blow out his candles. No longer here to eat just the frosting off of her piece of cake and let the cake stand looking naked and unloved. No longer here to bellow out the words in her wonderful, tiny voice to Happy Birthday. She's no longer here. It's strange.

Mark didn't really want to celebrate this year, but we did it anyway. It's still so important to the boys. Kids just don't understand that adults really could careless about "celebrating" another birthday ... especially when one just doesn't feel like celebrating. There's nothing to celebrate right now.

We went on a short vacation to the annual aviation convention in Oshkosh, Wisconsin. We left on Wednedsday (Mark's birthday) and got back yesterday. Rachel would've had a blast. And, although she wasn't there, she was everywhere.

There was a little girl there that Lance played with. She was six. At one point, she was sitting next to him as he played a game and she put her hand on his arm and her head on his shoulder and he said, "When you do that you feel just like my sister." PANG!!! Uh, yeah. Nothing like bring the water immediately to the eyes.

As a mother, whenever you are in a crowd of people you are naturally looking for your children to keep an eye on where they are. Even when you're looking at something else, you see your children in your peripheral vision. I was looking at an item on display and saw my three children--Blake, Lance, and Rachel--in my peripheral vision. I looked up and saw that we were going to go into a large crowd and saw that Mark, Blake, and Lance were together and with my peripheral vision saw that Rachel was still by my side. I decided that I should grab Rachel's hand before we went into that crowd so that I didn't lose her. Of course, all of this is happening within seconds. Luckily, before I reached down and grabbed Rachel's hand my head realised that what I was automatically thinking couldn't be true and I stopped and looked fully at "Rachel". Yes, "Rachel" was a little girl dressed in pink who stood the height that Rachel stood. She looked NOTHING like Rachel but she stood to my right just where Rachel always stood and she was the right size. In my peripheral vision, it was Rachel. I walked up to Mark, told him what I had just done and pointed out the little girl. As Mark grabbed my right hand he said, "Someone hold Mom's left hand so she doesn't try and hold the hand of any other little girl." With that, Blake took the bag that I was carrying out of my left hand and handed it to Lance and then he held my left hand. Mark and Blake kept me in tow as we went through the crowd. Tears filled my eyes and I didn't have a hand to wipe them before they gently rolled down my cheeks. I was wishing I had my sunglasses on so no one could see me crying, but they were tucked neatly on the top of my head because we were indoors. Soon enough we got out of the crowd and into the sunshine where I pulled my hands away, wiped the tears away, and quickly pulled my sunglasses over my eyes. You know what? Grief sucks.

Overall, we had a good time. Rachel was always there, though. I don't EVER want to forget her. Not EVER. But I do want to get to the point where it's now normal to not have her here. I hope that is something that actually comes. My mind and my heart can't be continually in this mode forever ... can they??? I hope not. Living will be way too hard, if that's the truth. I don't want to live like this forever. She will never be forgotten. I'm not too worried about that. But I sure would like to go an hour without being reminded of her. That has yet to happen. Or, at least, when I think of her to not have that terrible yearning and aching.

There are still some events that we have on our calendar this summer that will be hard. Mark's nephew is getting married and we'll be staying in a hotel. She loved doing that. Swimming in the hotel pool is going to bring all sorts of thoughts of her because that was one of her favorite things to do. My mom's family reunion is also coming up. Truthfully, I'm not sure I want to go. I know all of my relatives are gasping right now. But, I'm just being truthful. It's another event that she loved. She loved her great aunts and uncles so much. She loved her great grandma's so much. She loved spending time with some of her second cousins. It's going to be VERY hard with her not there. VERY hard. I don't know if I want to put myself through that. Yet, I know the boys will be madder than hops at me if we don't go because as much as Rachel loved those people, the boys do, too. Does Mom stay away because she knows how much it's going to hurt or does Mom suck it up and travel the painful highway because she knows the boys want to go and will enjoy it. It isn't like we can just show up for an hour and leave because it's a three-hour drive to get there. I haven't yet decided.

Today will be spent putting the house back together after a vacation. Laundry and all that jazz is on the active To Do list. Wonder if something strange will show up in the laundry room today. Would be nice if it didn't. Would be nice to get through the day without my heart aching. Fat chance. We miss her. We REALLY miss her.

Specific Prayers:
~Thankfulness for the safety of our travel.
~For the new "normal" of life to settle in.
~That we feel God's large and loving arms around us as we continue to walk through grief.

CANCER SUCKS!!! IT REALLY SUCKS!!!!

Wednesday, July 25, 2007 8:58 AM CDT

The pangs of a mother's heart who has lost a child are everywhere and in everything she does. I can't walk through the grocery store, Fleet Farm, or my laundry room without my heart jumping inside of my chest. The balloons in the grocery store that she diligently dug through looking for the "perfect" one to give. The pink boots in the aisle at Fleet Farm that Mark took us down in hunt for the automotive department. The purple boots sitting on my laundry room sink that need the mud whiped from them. It doesn't matter where I am or what I'm doing, my heart gets shocked several times a day.

It doesn't have to be physical reminders either. As we plan for vacation, I know that she would've loved what we're planning. Out of the blue, Lance will talk about how Rachel will be with us on the trip. "Lance, Rachel is in heaven and she won't be along. She's busy doing God's work and I doubt she has time to be watching us all day long." "But, Mommy, you said that we take her with us in our hearts where ever we go." PANG!! "Yes, you're right." He talks about her all of the time. It's good. I know that.

I took the boys clothes shopping. Sure was different with only two children. There weren't as many squabbles and we got done a lot quicker. PANG!! We went for lunch and I caught myself thinking, "Rachel's going to want pizza." PANG!! I have to stop and think about how many of something I need now. It's no longer automatic to know. I generally have one too many.

Walking into a restaurant, I'm still scanning for a table for five. PANG!! Oh, yeah. As a family of four, we fit about anywhere. I'm not used to that. The third seat of the Suburban continues to be flipped up. No longer does there need to be a kid sitting back there. PANG!!

I'm tired of my heart skipping a beat so many times throughout a day. I'm tired of thinking about her and not being able to touch her. I'm tired of crying. I'm tired of missing her. I'm tired of hurting. I just want her back.

Our one and only comfort is that we know that we'll see her again. I can't even begin to imagine the agony of thinking that death was it. How horrible. I thank God everyday for the gift of His son, Jesus Christ, who died on the cross so that all who believe in him would have eternal life. I used to want to live to be 100. I don't want to do that anymore. I want to be with Rachel. I want to be with Jesus. Don't worry, there are no suicidal thoughts running through my head. I would never do that to my family. But, living a long life no longer has the appeal to me that it once had. Guess it's not up to me, though. Hopefully the rapture will happen long before I get old!! :-) Then my entire family can leave together ... oh, what a glorious thing!

I know we will make it through this. I know that it's a process. I also know that it's going to hurt forever. I really hate this. I hate my heart lurching. I hate hurting. I hate missing her.

We really miss her.

Specific Prayers:
~For the health of our entire family.
~That the edges of grief to not be so raw and jagged.
~That God continue to give us His peace.
~That we feel God's loving arms surrounding us.

CANCER SUCKS!!!

Friday, July 20, 2007 8:02 PM CDT

Another shirt, another sock, her karate pants ... WHAT?!?!?!? How does this stuff keep showing up in the laundry??? I'm totally baffled. Shock waves rock my body each time I find something unexpected. I expect to see her clothes in her room, I no longer expect to see them when I'm sorting clothes.

Did you know that seven-year-old girls actually eat? I didn't know that until today. Rachel's godmother, "My" Tammy, and I took, Josie for the day. We took her to the Mall of America and had a Girl's Day. She not only ate her entire plate of food, but she had some of Tammy's, too! Tammy and I were looking at each other with raised eyebrows. Rachel would've taken two bites and said she was full. It was amazing to witness a female child eat!

Rachel would've enjoyed today. She would've had a blast had she been there with us. She probably would've gotten tired, though, and would've crawled into the stroller. It was strange to not have to take it with today. There was lots of talk about her, and every piece of clothing she would've enjoyed we showed to each other, including the pink baseball cap with the green camo back. It would've matched her green camo pants and pink shirt perfectly!!! You know, the outfit she got from Tammy during her last hospital stay that I literally had to peal from her body and wash at midnight so that it could get cleaned! What a funny girl. Yes, she would've enjoyed today. But, she wouldn't have been able to get on the rides that Josie and I went on because she wouldn't have been tall enough. That hit me today, too. She was SUCH a peanut!

We're planning vacations, more camping trips, and moving forward yet everything feels so wrong. It's been a tough week around here. I had the most wonderful dream that she was back--she had died but then came back to stay. The dream was fantastic!!! I just kept hugging her, and kissing her, and telling her how much I loved her, and how much I had missed her. I listened to her giggle, her voice, and to her playing with her brothers. Our house was full of life again. I told her that she needed to take her medicine and she looked at me with those beautiful blue eyes and blonde hair and said, "But, Mommy, I don't need medicine anymore. I'm completely healed. I don't have cancer anymore." I told her she was right but that I still wanted her to be seen by Dr. Bendel and have an MRI just to be sure. We then threw a big party so that everyone could see her and what a celebration it was. And then I woke up to a quiet bedroom and realized that it wasn't real. I sobbed because it had seemed so real. I wanted it to be real. I could still "feel" her it was that real. Reality can be so cruel.

It was just a dream. Yet so life-like. Dreams are strange things and I don't want to analyze it, I don't want to cheapen it, and I don't want to read more into what it was or speculate about anything. It was there, I dreamt it, I enjoyed it while I was dreaming and I was sunk when I realized it wasn't reality. I will leave it there where it belongs ... in the file of dreams. It won't be filed as a contacting, a reaching out, or any other mysterious label. It was a dream. That's where I'm leaving it.

Here's a writing that was brought to my attention. I found myself crying and nodding while I read it so I thought I'd share it with all of you.

***********************************************************
Words, Words, Words
By Darcie D. Sims, Ph.D.
Louisville, KY

"He's in a better place."
"At least you have other children'
"She's better off now/not in any pain."
"Where's your faith? You should be happy for him."
"God needed another flower in His garden."
"Time heals all things. "
"You'll be better tomorrow."
"You can't stay sad the rest of your life."
"Your loved one wouldn't want you to be so sad."
"You can have another baby."
"You were so happy together. Be grateful for that."
"At least he didn't suffer. "
"She was so young. You didn't really get to know her that well. "

Words; just words. Often spoken in an attempt to ease the pain of grieving the death of someone we love. But, instead of bringing relief, those words just seem to add to the hurt, the confusion, the anger, the grief. There are no words that will make it all right that someone we loved has died. But there are words that can soothe the hurt, ease the loneliness and add to the healing.

I don't think people are trying to hurt grievers. They just seem to engage their mouths before their brains. Or maybe what they were planning on saying sounded pretty good in their heads, but by the time those words of hope made the journey from their minds to their mouths, something happened. And those words came out, sending hurt instead of hope across the space between us.

What are you trying to say? Are you trying to fill the silence between us, show how much you care or how much you know? Do you think words will help when a heart is broken?

Why do we hide behind words, any words, when a hug or a simple touch on the arm would say so much more? Have we forgotten the power of presence? Do we fear silence because it might mean we have nothing to say?

Why must a moment between friends be filled with noise or empty platitudes or meaningless sounds of hollow comfort? Why can't two people simply be in the presence of each other, allowing that great strength to flow between them
without any words to interrupt the message?

"You can have another baby."
"You were so happy together. Be grateful for that."
"At least he didn't suffer."
"She was so young. You didn't really get to know her that well."

ARRRGGG! Words! Words! Words meant to help that only add to the hurt. Give me silence, please! Not emptiness ... silence. Not loneliness ... silence. Don't not come, but come silently. Sit on my couch, hold my hand, share a cookie, hand me a tissue. Come, but leave your words of hollow hope behind. No words can speak more eloquently than the shared silence of presence. Come sit beside me. Hold me. Touch me. Be with me, but leave the noise behind.

Are we afraid that silence will kill us? Are we afraid that we will say "the wrong thing"? (What is the right thing?) Are we afraid that we will "remind" the bereaved of their loss? (Do you think we will ever forget it?)

"Time heals all things."
"You'll be better tomorrow."
"You can't stay sad the rest of your life."
"Your loved one wouldn't want you to be so sad."

If only I could think of something to say in return! But my mind as well as my body and soul have gone numb. I am frozen and I can't think of anything to say. Sometimes I am so shocked that I cannot believe I heard what you said,
or maybe you don't even realize what you said.

"Be happy she's healed now."
"Why are you so sad?"
"We have gathered here to not to mourn the loss of _____, but rather to celebrate his life."

Words. Just words. You'd think they wouldn't hurt so much, but they do. Sometimes it really is better not to say anything. That doesn't mean don't do something ... it means don't use words to fill up the space that sadness
occupies. By all means, do something! Bring flowers, a casserole (not tuna,please), chocolate cookies, napkins, and paper towels. Come help with the laundry, the childcare, the mail, and the dusting. Drop off a ham, a turkey, a hug. Send a note, a lemon meringue pie, a donation to my loved one's favorite charity. Slip a note into my pocket, a card in my mailbox, a hand into my empty one.

Share a memory, a laugh, a moment. Tell me stories of the past; bring me pictures from your scrapbook. Speak of love, not sorrow. Remember the life, not just the death. Give me hope, not meaningless words.

Hug me, hold me, love me, leave me, but don't shower me with words that are meant to soothe, but sear instead. Your presence really is the healing touch. No words need be spoken between friends and family when love is the weaver of the threads.

"He's in a better place."
(I thought right next to me was a pretty good place.)

"At least you have other children."
(Yes, but I really loved that one, too.)

"She's better off now... not in any pain."
(She may be out of pain, but I'm not!)

"Where's your faith? You should be happy for him."
(My faith may help my heart feel better, but it's my arms that are empty and aching.)

"God needed another flower in His garden."
(What about MY garden?!)

"You can have another baby."
(Maybe, but no one can replace someone.)

"You were so happy together. Be grateful for that."
(I am grateful, but I want more!)

"At least he didn't suffer."
(Yes, that's true, but I am suffering now.)

"She was so young. You didn't really get to know her that well."
(Since when does age have anything to do with how much someone is loved?)

"Time heals all things."
(Time does nothing except pass. It is what you do with the time that might change things.)

"You'll be better tomorrow."
(Perhaps, but what about today?)

"You can't stay sad the rest of your life."
(Oh, yes I can.)

"Your loved one wouldn't want you to be so sad."
(How do you know? I have told my loved ones that I expect at least three days of heavy grieving. After that, they can do whatever they wish. But I do want them to be sad... at least a little bit!)

"Be happy she's healed now."
(That may be true, but it is still my heart that is broken ... my arms that are empty. What about me?)

"Why are you so sad?"
(Oh, I don't know ... maybe it's because someone I loved has died.)

"We have gathered here to not to mourn the loss of _____, but rather to celebrate his life. "
(The thought here is nice, but the timing seems a bit "off." I am not quite ready to celebrate. I think I need some grieving time, too.)

Words. Just words. Let them fall to the wayside when you hear words that do not quite touch the pain or hit the mark. Realize that someone is trying to reach you, soothe you, and comfort you. So what if their choice of words falls short of the goal or even brings a moment or two of pain? At least someone cares enough to keep trying! And the sounds of silence are even worse than the words that come wrapped in good intentions and tied with a silly looking bow.

I'll take your comfort any way you can share it with me. But maybe the best words to say are simply, "I'm here and I don't have a clue as to how to help, but I'm here, and together we'll figure this thing out."

Come. Bring your gifts of memories, your arms with chocolates and your presence. Leave the words behind and just come. I'll hear what you mean, not what you say.
***********************************************************

Specific Prayers:
~For the health of our entire family.
~For the heaviness to be lifted.
~To feel God's loving arms around us.

CANCER SUCKS!!!!

Tuesday, July 17, 2007 6:47 AM CDT

Something I have learned while traveling along this bumpy road for five years is that if a couple of people ask me about the same thing, many more are thinking the same thing, too. So, for my family, extended family, acquaintances and complete strangers I want to cover my sister's pregnancy. I guess my friends need not read this as they already know how I feel ... without even asking (it's freaky, but they can actually read my mind!!).

For those of you that don't know, my sister and her husband are expecting twin girls the end of August. A couple of people have mentioned how hard it must be for me that she's expecting girls. The answer to that is, no, it's not hard. It's not hard for several reasons. First and foremost, I know that this is what my sister has wanted for a long time. This is something that science helped them achieve and I am extremely happy for them--heck, I'm gonna be an auntie!!! Purely selfish motive here! I'm an aunt 18 times over and a great aunt 27 times with another on the way on Mark's side of the family. But, on my side of the family there are no other children besides my own. I'm VERY excited about these babies.

The fact that they're girls ... well, they either have to be boys or girls. There are no other choices such as puppies, lizards, or aliens (although newborns do tend to resemble each of these). If there were a dozen possibilities and they still happened to be girls, maybe then I'd have a bit more to ponder. But with there being only two choices, I'm certainly not going to go around begrudging everyone who has a girl. Although, those of you that have seven-year-old girls are a different story!! Hang onto them tight as I might steal one--especially if they have blonde hair and blue eyes!

Which brings us to the fact that my sister will give birth to babies, not seven-year-olds. I didn't lose my daughter at birth or as an infant. She was not a baby. She was a child. Losing an infant would've been a different experience than losing a child at seven. Will it bother me when those girls are seven? That I can't exactly tell you, but I don't think so. There are not too many seven year olds that were as petite as Rachel. So, when the girls are four (about the size that Rachel was) will that bother me? I doubt that, too, as they won't have the intelligence that goes along with being seven. Now when they're two and wearing pigtails (that is if they have any hair!), that may be a reminder but just about every little girl in pigtails has been a reminder of what we lost to cancer for the past five years. That's nothing new to us.

No, those babies don't bother me at all. But there is one little girl who will stand as a reminder for the rest of our lives. Rachel's cousin and very best friend, Josephine. Josie is the same age as Rachel. They were the very best of friends. They had a relationship that you just don't find in little girls very often. They truly loved one another. They were also able to spend time together and Josie would even come to the hospital even when Rachel was so sick that she didn't know that Josie was there. Rachel and Josie went to preschool together, they played together whenever it was possible, they had sleepovers whenever they could, and Josie would come see Rachel at the hospital or at home even when she was too sick to play.

Two years ago when Rachel was on the ventilator, Josie was adamant about coming to the hospital to see Rachel and to pray over her. What four year old does that??? So, Josie's mommy (Mark's niece) brought her up after preparing her for what she would see. It was absolutely beautiful to see Josie and Rachel together and how Josie would tenderly caress Rachel. That was one of many times that Josie was there for Rachel. It is this little girl that will make my heart wrench for the rest of my life. It is this little girl that will serve as a reminder of what Rachel would be doing. It is this little girl that I ache for as I know she misses Rachel dearly. Thank goodness she doesn't look like her. As a matter of fact, she's about as opposite as you can get. Where Rachel was blonde, Josie is brunette. Where Rachel had blue eyes, Josie has brown. Where Rachel had fair skin, Josie has olive skin. Two complete opposites yet their hearts were attached.

It is this girl who's milestones will catch me. Each year as Josie scales the grades of school, I will think that Rachel would be there, too. When she graduates, Rachel would be graduating, too. When she gets married, Rachel should be in that wedding. As she has children, Rachel should be there to celebrate with her. Yes, it is THIS girl that tugs at my heart strings and makes me cry. It is THIS girl that can make me think about Rachel at a drop of a hat. It is THIS girl that I can forever talk to about Rachel because she knew her. She loved her. She still loves her as I do. It is THIS girl that will be able to rock my world. No baby can do that.

No, those babies will never know Rachel. They won't have any idea of who she was or what she did or what she went through. They will only have pictures and stories that we tell them. They will never know her. They missed out. I guess in a way I already pity them for that. And they will never be able to fill my empty arms--no child ever could, even if I had my own baby. They will replace nothing. It's just another nail showing how life moves on.

I'm happy and excited about these new babies. There is nothing that hurts about them or reminds me of Rachel. I hope as they grow we say, "Remember when Rachel ...". To not talk about her is to deny her existence. And, oh, that child existed! I am not fragile, I will not break. No one needs to tip-toe around me or make decisions for me about topics that they don't even understand.

It is certainly interesting how so many people think they know what I'm feeling when they don't have a clue and give advice to others on how to treat me. I think they probably mean well, but they do more damage then they will ever know. Asking me is a great place to start. Don't ever hesitate to ask. As I said, I'm not going to break. Even if I cry, I like to talk about Rachel. She is, was, and will always be my daughter. Not even death can rob me of that. I will always have three children even if I'm only raising two. Nothing, not even time, can erase the fact that I gave birth to three children and that for seven years I raised three children. I will always be the mother of three. To deny that is to, once again, deny Rachel's existence. Trust me, she lived. Her fingerprints are everywhere.

I look forward to new life that will bless our family and I even silently giggle under my breath at what my sister is in for with twins (these are her first children). I'm sure my dad is wishing upon her a child JUST LIKE HER! You know that curse?? Yeah. My grandma cursed my dad and it worked, so he's probably handing it down! No, these babies aren't Rachel reincarnated. No, these babies don't remind me of the daughter I no longer have. No, they don't replace Rachel. No, it isn't hard. Nothing about it is hard. Josie is hard. And not just because she will stand as a reminder but because I know that she aches, too. And that's just not fair. No seven-year-old should ache for the loss of her best friend. I hurt for her and with her. I love her. And together, she and I as two of Rachel's favorite females in her life, will travel forward. Always missing Rachel. Always wanting Rachel to be there. Always knowing that we will see her again. Always loving her. We will go forward as special people in each other's lives knowing our unseen connection will always keep us close. Together we will always have fingerprints on our hearts. Fingerprints that will present themselves for the rest of our lives. It is THAT girl who does me in. Thank God I love that girl as much as I do! She will forever be a connection. She will forever be a fingerprint.

Specific Prayers:
~For the health of our entire family.
~For continued peace as we travel this road of grief.
~To feel God's arms and love surrounding us.
~For the safe delivery of "the girls".

CANCER SUCKS!!!

Saturday, July 14, 2007 7:00 AM CDT

The triggers, the fingerprints of Rachel's life, are everywhere ... even in my master bath closet. Who needs to create them, who needs to hang onto "stuff", who needs to associate things with her when the triggers, her fingerprints, are everywhere?

Who would think that cleaning out my master bath closet would be "dangerous"? But, there was her fingernail polish. There was an unopened package of childhood makeup (why do people by a three-year child makeup anyway????). There was her favorite lotion that I went to the ends of the earth to find for her. With each item that I pulled out, I would grimly smile, maybe chuckle, and a tear would trickle down my cheek. Her medicated creams and lotions from when she had that terrible rash. More fingernail polish stuff. More makeup. "Girlie" sunscreen. Baby lotion from some of our hospital stays. Baby bath from the same hospital stays. It just kept coming. Amazing how much stuff one closet can collect over the years. And the memories. A closet full of memories. Who would've thought? It's a bathroom closet. Fingerprints. Her fingerprints are everywhere.

I pulled dirty laundry from Mark's and my closet. What would appear this time? A sock. One tiny sock. Her sock. Huh, that's where that missing sock is. Why now? I thought I was done doing her laundry. But, no, here's one more piece. I stand holding that sock. Looking at that sock. Not her favorite pair, but still hers. No, I didn't smell it ... it was obviously a dirty sock. Fingerprints. Her fingerprints are everywhere.

Yesterday I was digging through a pile of papers on my desk. I pink post-it note is spotted. I'm almost scared to pull it out of the stack. There it is in all it's glory. There she is. Her handwriting. Her drawings.

To: Mommy
From: Rachel
I love you so mach mommy.
I like to cuddle with you mommy
so mach I like.
I love you.

And then she drew a picture of her and me holding hands.

What do you think that did to me ... spelling errors and all? If you said it turned me inside out and made me jump up and down because I didn't know what to do with the feelings that I was feeling ... you'd be right. I paced the floor. I cried. I'm crying now as I type this. What do I do with this little pink piece of paper that has just ripped my heart out again, made me angry, sad, upset and yet smile and laugh at the same time? I paced the floor some more. Then I stuck in on my refrigerator. I put a magnetic frame around it. Tammy already found it there all on her own. I guess that's a good place for it.

I was making supper the other night. Let's see how many plates do I need? Mark's not home so I need four. Then I stop. No, I need three. The feelings flood over me. Who needs to make triggers? Who needs to create anything or keep anything or preserve anything when you do it all on your own on a daily basis over the weirdest of things? A song, a sock, a lotion, a post-it note ... fingerprints.

My own mind can be my worst enemy. It can bring her to the forefront in less than a blink of an eye even when I really don't want to think about her. There are times I really don't because I don't want the feelings that come with it. Sometimes I just want to be left alone from those feelings. That's pretty rare. She's everywhere. A picture. A conversation. A toy. A memory. A post-it note. Fingerprints. Fingerprints everywhere.

Yet, I want to talk about her. I love to talk about her. She was a wonderful human being. She was magnetic. She was full of life. She bubbled over with love and compassion. She was fun to be around. I miss her. I really miss her. But I don't want my life to be consumed by her anymore. It's a real struggle. Especially since her fingerprints are everywhere. Even outside. Her swing. It sways ever so lonely in the breeze. Untouched this year. Yet, it's there. A reminder. An empty swing. The flowers she planted this spring that Mark waters everyday. I've heard about those "stupid" flowers Rachel HAD to plant more than once. Rachel's flowers. A trigger. They're beautiful. They're pink and purple with one token white one. She would've loved them. She would've been watering them. Instead, Mark is. "Stupid" flowers. They're annuals. They won't make it through the winter. They'll be gone and next year they will still serve as a reminder. An empty patch of ground that used to hold a part of Rachel. Fingerprints. Everywhere there are fingerprints. Who needs to create them when they are everywhere?

I'm almost afraid to clean another closet. What might I find there?? Fingerprints. Fingerprints that a squirt of Windex and a towel won't wipe away. They are fingerprints on our hearts. Fingerprints that encircle the hole that is there. Fingerprints that can make the feelings flood and the water faucet of tears turn on. Fingerprints. Wonder what we'll find next ....

Specific Prayers:
~For continued peace as we walk this road of grief.
~To feel God holding us.
~For the determination to continue to live life to it's fullest even in the times we don't feel like it.
~For the guilt of living to pass.
~For the healing that can only come from the One who understands.

CANCER SUCKS!!!!

Wednesday, July 11, 2007 10:11 PM CDT

I took the boys camping over the past several days. She wasn't there. She didn't have a suitcase to pack or a blanket to bring. I didn't pack any of her favorite foods, toys, or movies. Her pink lawn chair stayed home along with her pink bike, pink swimsuit, pink swim goggles and pink floaties. She didn't jump off the diving board or sit on my lap wrapped in a towel when she got cold. We no longer need kid's hair conditioner because the boys don't need it--but I have three bottles at home.

There were no fights over which siblings were sleeping together because there were enough places to sleep alone. I didn't have to help anyone shower. She wasn't at the campfire and she didn't burn any marshmallows. She didn't make any for me, either. She didn't complain when the boys took off on their bikes without her or when they went to the arcade. She didn't beg for a pony ride.

There was no one there that couldn't reach the latch on the refrigerator by themselves or the faucet on the sink. Everyone could reach the hand towels, the plates, and their toothbrush. Everyone could hang up their own towel on the clothesline.

She wasn't there. Yet, she was everywhere. I thought of her over and over and over again while we were there. "Last year she __________" (fill in the blank). I did that over and over and over again. She wasn't there. Her name was mentioned a gazillion times as we quoted memories by the dozen. She would've had a great time. But, she wasn't there.

Since we've gotten home, Lance is running a high temperature. It's not normal for a mother to have "I hope it's not cancer because I couldn't bear to lose another child" run through her mind at the first sign of a fever. That's weird, actually. Life will never be normal. I will never look at things the same again.

Overall, I think we're doing better than is to be expected for our place in the grief journey. I think we're doing exceptionally well. But, we'll never be okay. Life will be different, but not okay. Life will never be normal, but we'll move on. We'll learn to operate in this new life. We'll learn to live life without her. But we will never be okay. We'll be "fine" because that's the pat answer that everyone wants to hear. "Oh good, she's fine, then I don't have to deal with it". Yeah, I'll be fine ... but not okay. We'll go through the motions, we'll live life to the fullest, we'll laugh, we'll vacation, we'll raise our boys to the best of our ability ... but we'll never be okay. It's hard to be okay when part of you has been ripped away. It's hard to be okay when you've got a hole inside of you that can never be filled. It's hard to be okay when you have a wound that will never heal. I don't believe time heals anything. It may make the edges a bit less rough, but that hole will always be there. Always. We will never be the same. We will never be okay. She wasn't there.


Specific Prayers:
~That we continue to feel the peace that passeth all understanding.
~That God continue to carry us as we walk through the valley.
~For the health of our family.

CANCER SUCKS!!!

Friday, July 6, 2007 7:29 AM CDT

The Fourth of July. A day of sunshine, laughter, friends, family, food, fireworks and fun. A day she loved. We went to the family gathering and soon one of her cousins showed up with whom she often played with. Her cousin wandered around a bit because there weren't too many kids there yet and the ones that were there were boys. I knew exactly who should be there. I knew exactly what they'd be doing. My stomach churned. Soon more girls showed up and they were off. She should've been off, too. Later more girl cousins that she enjoyed showed up. There was an empty space on the bench they were on ... guess who should've been there? Who needs to make triggers when they just seem to develop all on their own?

Of course, I was imagining what it would be like if she were here and healthy. I even caught myself saying that I needed to find Rachel so I could put pants on her. UGH!! But, besides healthy, my mind also went to the other side. What would she be doing--what would we be doing--if she didn't feel good? She'd be in my lap, I'd be giving meds, she'd be sleeping in my lap, we wouldn't have stayed as long, we may not have come at all. Truly, guiltily, life is simpler. Planning is definitely something that is happening. Our once very open summer is quickly filling up. My truck has yet to make that dreaded trip to Children's in a very long time. I don't miss it. I thought I would. I don't. I don't miss anything about that place. I thought I'd miss the people. I don't.

I'm clinging to my friends right now. Thank God they're clinging right back. My cell phone rings. Mark looks at me quizically. I'll announce who it is and add, "My daily phone call. She's just checking on me." Mark smiles and says, "Good." Ahhhhh ... friends. God's gift, those friends.

All of the flowers and plants from Rachel's funeral have finally been taken care of ... including the dead ones on the fireplace hearth. No, I didn't deal with them last week like I said I might. We were planting, replanting, and pitching flowers and plants like maniacs yesterday. It was a hot, dirty job but it's done. It felt good. The fireplace is bare, the front walkway where all of the outdoor plants got temporarily placed is bare, the counter is bare, but they're all taken care of. They are all in their spots. One more job done and over with. One less thing to look at, I guess. I may have to get a plant or two for the fireplace because I sure liked the flowers there and it's just so bare now. I'm sure I'll get used to it though. Back to what it was.

Four weeks ... and counting, I guess. Four slow weeks. And counting. I remember doing this after my father-in-law and my mother died. Counting the minutes. Counting the days. Counting the weeks. Counting the months. Now it's finally down to the years. The next thing to get through is Mark's birthday and our summer vacation. Poor Mark got hit first with Father's Day and his birthday comes first, too. We always have hated birthdays in this house. Hope we no longer have to fear them.

Rachel's headstone drawing is in. We saw it yesterday. We also approved it. It should be in in less than 90 days--before the frost takes over. Graves without headstones are just so sad. So sad.

And life drudges on. Some moments in time are okay. They really are. But, others, really aren't. Last night in the shower I busted into tears. Sobbing tears. Okay, whatever. The next minute I'm fine and going about my business. Grief ... what a strange and tumultuous emotion. I hate it. But we're making our way through it. One day at a time. Sometimes one minute at a time. But, we're walking it. We all are. Even when little nieces say to you, "You don't have a girl now so you need me to spend time with." Uh, yeah. Out of the mouths of babes. It rips your heart out, brings tears to your eyes, yet a smile to your lips all at the same time. I grabbed her, hugged her, kissed her, and told her she was right. She's coming over next week. I think we'll go shopping for something pink!

Specific Prayers:
~That our family continues to walk forward through grief.
~For the health of our entire family.
~That we continue to lean on God and that He continue to give us peace.

CANCER SUCKS!!! (We thought about putting THAT on her headstone!!!)

Tuesday, July 3, 2007 7:13 PM CDT

Thank you so much for the wonderful and beautiful guestbook entries. They make me laugh, they make me cry, they make me know what truly great people we have on our side. THANK YOU!!! It's interesting, though, how thoughts of "and they get to go back to their lives" fill my head everyday now.

Yes, they get to go back to their "normal" lives. At the end of the day, when darkness falls and the grief can become unbearable, as my eyes blur and the tears trickle down my cheeks, they get to go back to their lives. Everyone can drive away from our home, put the phone back in it's cradle, or shut off the computer and go back to their "normal" lives. We don't get to shut it off.

And they go back to their lives. You can be our best friend, our closest most cherished relative, or a complete stranger. You get to go back to your lives. As the door closes, the phone is replaced, or the computer shuts off, you turn around and go back to your lives. We turn around and can't leave it. And they go back to their lives.

We were driving into town on our way to Rachel's visitation. The makeup of the car is different. The kids are sitting in the wrong places as far as we are concerned. We are also missing one. There is no car seat. Everything is wrong. Everything! I look at the boys over my left shoulder and know that this is now my future. I turn back forward as my eyes mist up. I look out the window to my right and see kids playing basketball. I keep looking. We pass a field where a farmer is baling hay. And they go back to their lives. No one has any idea of the dispair in the black truck that is passing by them. And they go back to their lives. They have no idea that this black truck is heading to the visitation of their seven-year-old daughter. And they go back to their lives. They get to go about their lives. But we don't. No, our lives have stopped. And everyone else goes back to their lives.

It's been a tough week so far. Saturday we picked out Rachel's headstone. What an awful thing to do for your kid. Sunday was the hardest day yet. It was just a tough day all around. Nothing in particular, yet everything. "She should be here" was pretty much the main theme. Today is the second anniversary of my mother's death and the first day that I went grocery shopping since Rachel's death. It sucked. I kept seeing items that I would've normally put into my cart for her. I would think, "Oh, I've got to grab that for Rachel" and then it would hit me that no, I don't have to grab that for Rachel. Sometimes I reached out my hand to grab it and in mid-air I would remember. It was very hard. I called my girlfriend when I got into the parking lot and she scolded me for not calling her during the shopping excursion. I reminded her I don't get good reception in there. Mark asked me why I didn't wait until he got home so that I didn't have to go alone. Uh, because I didn't even think about it. I mean, it's grocery shopping for pete's sake. Who would've thought that that would be so hard ... I certainly didn't. What a drag. "How are you today?" the checkout clerk askes perkily. Do they really want to know? Why do people ask that? How do you think they'd react if I said, "My daughter's dead. How do you think I am??" They expect the pat answer of "fine". But I'm not fine. Today is not fine. Tomorrow isn't going to be fine. Life is not fine. What a stupid question. "Have a nice day!" Uh, it hasn't been nice so far so what's going to change about it?? Another dumb remark.

"Hi! Were you able to find everything you needed?" Now that's a question I can honestly answer. "Thanks for shopping at ________, hope we see you back again soon!" That's something I could smile at and answer in my midwestern drawl, "Oh, you betchya!" Have a nice day? Uh, whatever. And they go back to their normal lives.

Specific Prayers:
~For comfort and peace during our grieving.
~For the health of our family.

CANCER SUCKS!!

Friday, June 29, 2007 9:35 AM CDT

On the outside everything is moving. The day-to-day grind of life keeps you moving. But it's different. Life is different even if it's moving. There are still only 24 hours in a day. The sun still comes up on a daily basis. It still rises in the east and it still sets in the west. Too bad.

Yes, it's moving. The outside looks normal. There are no holes on the outside. We move from one activity to another looking completely normal. Ahhhhhhhhhh ... yeah. "Looking" is the key word here. We look normal. We smile. We laugh. We get up and brush our teeth just like the next person. All of our limbs are attached. Our hair is in order. We are dressed just as we were before. But, there's something missing. There's no tag-a-long. There's extra time because there's no one else to dress. There's no one else to bathe. There's no one else to feed. There's no one else to push along to get going (she was our slow one--had too many other things to do, don't ya know). There are no medicines to mix or administer. Yes, we "look" normal.

But we aren't. If you could turn us inside-out, you'd see holes everywhere--especially in our hearts. Rachel-shaped holes. Our hearts have Rachel-shaped holes in them. Our lives have Rachel-shaped holes in them. We get out of the house faster than we did before. Huh? Oh, yeah. Mom can leave the house on a dime now without thinking about taking a single kid with her. Huh? Oh, yeah. Mom and Dad can go on a motorcycle ride together whenever they want to without any prior thinking about it. Huh? Oh, yeah. Mom can sit at the computer, outside, at a friend's house, or at a restaurant in total silence, in total peace, without anyone needing anything from her. Huh? Oh, yeah. We can send the kids to bed knowing that they'll go there completely on their own without any intervention from us. Huh? Oh, yeah. We're planning. Huh? Oh, yeah. We're planning trips. Huh? Oh, yeah. Oh, yeah.

It's empty. See where the guilt comes from? It's sad. I don't feel bad about the guilt, but I still feel guilty. That's okay. I can feel guilty. I want to feel guilty. I need to feel guilty.

We know where Rachel is at, thank God. No one stole her from us. We know where she is. Also, no one took her life from us. We can't be mad at someone for murdering her or for killing her in a car accident. There is no blame anywhere. She didn't drown while we sat there oblivious to it, we didn't back over her in our car, no one was driving careless ... we can't be angry at anyone. There's no one to blame. What a relief. I can't imagine having that on top of the rest of it.

We have no regrets. There are no "what if's". We know that we did everything we could do and then some. We know that she got the best possible treatment and care she could have. We left no leaf unturned. We are grateful for that. There are NO regrets. There is no guilt for what we did or did not do for her treatment. That's not where the guilt comes from. We have a completely clear conscience on that. There is no anger, no guilt, no anything concerning what we did to try and rid her of that monster called Ewing's sarcoma. The guilt comes from just living life.

Life has changed. We've changed. In a blink of an eye we are different. Completely different. Our home is different. Our lives are different. Our identities are different. Our family is different. We are different. We are different. Once again, to never have what we had before. Once again to travel a road untraveled. To once again be pioneers into an existence unknown.

And we'll do it. We'll travel it. We'll walk it. And, we may look as if we are doing it. We may look just fine. But if you look closely, you'll see that we're rittled with holes. Every aspect of our lives is rittled with holes. EVERY aspect. There are changes everywhere. Our everyday lives are filled with changes ... with holes. There are reminders of her everywhere. There are reminders that she's not here any longer everywhere. Everywhere we look, she's there. Everything we do, she's there. The triggers are everywhere. It will be good to diminish some of the triggers, yet right now it's hard to do that.

The flowers from her funeral sit dead on my fireplace hearth. The pink roses that Blake got her with the "sister" ribbon draped through sit in a beautiful vase on my fireplace hearth along with a few other beautiful arrangements in beautiful vases, our family picture, a picture of her looking upward, and her treasure box. I need to remove the dead flowers, but I don't want to. It feels as if removing them is removing her. This is the last thing I have of her--even if not really hers. Throwing away the flowers is throwing away the last thing I have connected to her. They don't bother me to see them sitting there. But throwing them away is something I have yet to come to terms with. The thought of throwing them away is the trigger. How stupid is that? Typing this out has just helped. I think those flowers will disappear today. Changes. More changes.

Three weeks. She's been gone three weeks. That's all??? Ugh. If three weeks takes this long, how is three months ever going to come? Three years will be an eternity. Three weeks. Only three weeks. And life has changed so much. So much. Hmmmmmmmmmmmm ... so much. Those were her words. She'd always throw them on the end of a statement. "I love you so much" was a favorite saying of hers. "I miss you so much", "I want to play with you so much", "I like this so much". Yes, she liked to add "so much". I don't think I'll ever hear those two words again together without thinking about her. See? Triggers. Triggers everywhere. Who needs to make them or have them when they are already everywhere? "I love you so much". Wish I could hear that again.

The cleaning out of physical triggers continues. I have a feeling I will continue to find them for years to come. Triggers, triggers, everywhere a trigger. They trigger thoughts of her. They trigger tears. They trigger the feelings of emptiness, guilt, and sadness. I hope to rid us of many of those physical triggers because the nonphysical ones are so plentiful on their own. One day at a time, one trigger at a time, one room at a time. Her room remains untouched. For now, that's okay. The time will come and I'll know when that time is. It's not today. Nor tomorrow. Her room should have triggers in it for now. For now. So much. Yeah ... so much.

Specific Prayers:
~For continued peace and comfort as we travel this road of grief.
~That we not linger in grief overly long.
~That we keep turning to our Lord.
~For the health of our family.

Tuesday, June 26, 2007 7:44 PM CDT

Empty. Guilty. Sad. Three emotions that seem to flood these days. All three normal. All three not wanted.

It's so empty. There is an empty spot in our hearts. There is an empty spot in our house. There is an empty spot in our arms. Empty. It's so empty.

There's an empty bedroom. An empty locker. An empty laundry basket. There's an empty bike holder on the bike rack (found that one last night--caused a big old lump in the throat). There's an empty chair at the table (had to remove that one from sight). There's an empty child's swing. An empty car seat. An empty spot in front of the play kitchen. There's an empty pink lawn chair. An empty hospital suitcase. An empty lap. It's just so empty. Life is just empty. Empty. So empty.

There's the guilt. The guilt of being able to do things that we haven't done in years. The guilt of being able to pick up and go. The guilt of enjoying ourselves. The guilt of living. The guilt of living freely. The guilt of no longer being tied down. The guilt of having freedom to do whatever we want to do. The guilt of being able to be spontaneous. The guilt of being able to plan. The guilt of laughter and fun. The guilt of knowing that it's alright to be doing these fun things, these spontaneous things, these planned things, these carefree things, yet you still feel guilty. We'd rather not be "free". We'd rather be tied down. We'd rather have her healthy and living freely, but we'd take going back to what we had if we could just have her. The guilt. Other parents who have lost children from cancer have said they felt the guilt, too. Good ... I'm not losing it. The guilt. Oh, Rachel, I wish you were here to share in the joys of life instead of me having twinges of guilt as I enjoy them on my own.

The emptiness. The guilt. The sadness.

Such sadness. Such immense sadness. And longing. Longing to see you. So sad that I can't. Sadness at not being able to touch you, to kiss you, to hold you, to feel your breath on me ever again. Sadness at the emptiness. Sadness with the guilt. Sadness at seeing all of the toys that are now not played with. Sadness at knowing our family is now four instead of five. Sadness at the fact that we do fit better in a restaurant booth. Sadness at the fact that we never minded being a bit squished and to know we'll never giggle over that ever again. Sadness at waiting for you to walk through the door and to know you never will again. Sadness each time your bedroom door is passed. Sadness at the last shirt of yours to come through the laundry. Sadness. And tears. Those waterwork tears. Just such sadness. A sadness that no one else can understand except those who have a lost a child. What a stupid club to belong to. WHO signed us up for that one????? I'd like to ring their necks.

Empty. Guilt. Sad. All normal. All not wanted. Another new normal. We can never go back. We can't go back to what we had with cancer and we can't go back to what we had before cancer. We now tredge a lonely road without her. A new one. It's rocky. It's bumpy. It's full of weeds and potholes. We walk it clinging to God's hand as He leads us through unknown territory. I'm positive that if I let go, I'll fall over the cliff. Not even sure there is a cliff, but I'm afraid to look down just in case. I'll just keep hanging on and putting one foot in front of the other. And, for now, I'll keep feeling empty. I'll keep feeling guilty. I'll keep feeling sad. With time, we will walk out of the those valleys, still clinging to God's hand.

Empty. Guilt. Sad. What stupid emotions. I don't want to have them.

We miss her.

Specific Prayers:
~For the health and well-being of Blake and Lance (oh, for Mark and I, too, I guess).
~That we feel God's presence as we walk this lonely road.
~That we not linger overly long in grief.
~For love and protection.

CANCER SUCKS!!

Saturday, June 23, 2007 7:28 AM CDT

Two weeks. She's been gone only two weeks. It seems an eternity. We grope through each day knowing that if we stop to think, she will be what fills our thoughts and that the tears will be only moments away. Yet, thinking about her seems to be all that fills our time. My entire day can still be filled by Rachel.

Yesterday for instance, was filled with working on more Thank You's for memorials. I also grudgingly, cleaned out her locker. The sight of her pink flower swim goggles found in one of her bags sent me into tears. I didn't "clean out" by going through her stuff, I just took everything up to her bedroom. My girlfriend was there to help me through it. I also took all her clothes that were hanging in the laundry room up to her room and I emptied her clothes that were in her basket from the laundry room, too. Then, disheartenedly, I took her name label off the basket. I folded that label in half and it felt as if I was sqeezing my heart to the point of bursting. I just want to throw something. Anything. Breaking something against the wall will make me feel better, right? Doubt it.

Lance and I had a wonderful day together on Thursday. He wanted to go to the Minnesota Landscape Arburetum. So, that's where we went. We walked and walked and walked and walked and then we walked some more. We went through mazes done with trees and shrubs and had a blast. We looked at beautiful flowers and weird art. We took a tram ride in the rain. We had lunch at the restaurant. We had a very good time. As we were walking hand-in-hand at one point, Lance looked up at me and said quietly, "It's been a long time since you and me did anything just the two of us." "Yes, it has. Do you understand why Mommy hasn't been able to do this very much with you?" "Oh, yes, Mommy. Rachel has been sick." I nodded. "I wish it was for a different reason that we were able to do things together now." He nodded and said, "I wish Rachel didn't die." "Me, too, Honey. Me, too." With that, he squeezed my hand and let it go so that he could take off running in front of me yelling, "COME ON, MOM!! RUN!!!" Oh, the resiliance of children. They're like bouncy balls. They just bounce right back. I guess my bouncy ball is a tad on the flat side. Didn't know they did that. I have yet to have a bouncy ball in my house that has EVER gone flat. Leave it to me to get the one that doesn't work. Well, maybe I'm bouncing but not very high at this point.

Another Saturday for Mark to live through. Saturday's were always "their" day. The day she waited for all week long. The day her daddy was home and could spend time with her. The day he did exactly that. Whether outside, inside, or in bed, where ever she was able to be is where you found her daddy. Today? Today he's at work. Is it a good thing or a bad thing that this is his busy season? I don't know. He's so busy that he has to go in on his days off just to get caught up. That's how summer can be around here at times. That's the price of owning a seasonal business. Whenever he had to go in on a Saturday, and if she were able to, she'd be with him. "Every Daddy needs a little girl," Mark was told by one of his friends when I was pregnant with Lance (we didn't know the sex of the baby). I think Mark would totally agree with that right now. I think he totally agreed with that the moment she was born. And now that little girl that he helped bring into this world is gone less than a decade later. How unfair.

This grieving process is so strange. It's such a selfish process. I know that it's one we "have" to go through (it's amazing how people feel compelled to tell us what we "have" to do, and how we "have" to feel--sometimes people should just not say anything and give you a hug and move on). Yet, it's all about ourselves. It really has nothing to do with the person that died. We've all heard that Heaven is a beautiful, wonderful, unexplainable, peaceful place. It is to be with our Lord. Why do we fight death so? Because WE don't want to miss our loved ones. Why would we not all be chomping at the bit to get there and celebrating when loved ones achieve it? Because WE miss them. "She'll never reach her full potential." Oh?? Whose potential are we measuring it by? Obviously God thought she DID reach her full potential. Her work on earth was done. Lucky her to have reached it so quickly. Must've been a quick learner, that Rachel. What does that say for the rest of us?? We miss her. We want her. We grieve. Selfish. Yet, something that we must go through. I'm shaking my head right now. Just think if this could be a time of celebration rather than of grief. What if this could be a happy time? A joyous occasion? Now wouldn't THAT be something? What if this could be something to be so proud of--like a graduation? WOO HOO!!! SHE MADE IT!!! SHE DID IT!!! SHE'S OFF TO THE U OF JC (the University of Jesus Christ)!!! But, no, that's not how death is "celebrated". And, yet, I wonder who won. Is the prize really a life here on earth? Or is the prize having eternal life with our Lord? I think we all know the answer to that. And yet, we still grieve. Why? Because WE miss her. Selfish. Pure selfishness. Yet, something that has to be done. Weird.

I know that grieving is a process. But I truly think it's a process that we, ourselves, can dictate a bit. Because grieving is a selfish process, I think we can have choices about how it affects us. We can choose to be all-consumed by it and live in it for years and years and years, or we can chose to feel it, process it, and move on. There will always be an emptiness. Always. A part of me is gone. But I can chose to wallow there or to continue on. I can turn it into a pity party if I want to. I think for a while we're all allowed that. But we can't stay there. I don't mean to diminish grief ... heck, I'm smack dab in the middle of the most horrific feelings ever experienced by a mother. I also know that I'm not going to choose to stay here because this really sucks! I'm so ready to be past the grief that it's not even funny. I don't want to cry all the time. I don't want to think about her all the time. I don't want every waking moment to be about her. She's gone. There's nothing that will change that. I'm trying to be happy for her. I don't want any vibes from this world to hold her back from experiencing her full potential in Heaven. She's a remarkable girl and she must have an important role with God and I certainly don't want to be the one hindering that in any way, shape, or form. I want to celebrate for her. Lucky girl. I'm jealous, truthfully. She's there. She's with Jesus. I don't think it gets much better than that.

Yes, celebrate for her, but grieve for myself. There's that "I" thing again. And how can I do both? I don't want to grieve for her. I want her here. I want to hold her again. I want to see her again. I want to kiss her again. I ... see where this is going??? It's all about me. UGH!!!!! I haven't changed my mind at all .... grieving is still a selfish process. One I hope to not linger in forever. Does that make me a bad Mommy? I don't think so. I just want to feel better.

Grieving ... it sucks. We miss her.

Specific Prayers:
~For continued peace as we struggle to live without her.
~For comfort.
~To get to that place past grieving quickly.
~For the health of our entire family.
~That Rachel's life, her walk, continue to live on so that others may still find Christ through her.

CANCER SUCKS!

Wednesday, June 20, 2007 8:19 PM CDT

Another day lived without our little sunshine. Unreal. The past three days have totally seemed strange. I keep expecting my dad or Tammy to walk through the door with her because she's "just" with them doing things at their house or doing something fun with them. But, no, Dad's on his honeymoon and Tammy shows up with tennis shoes in hand to walk but with no Rachel.

I ran errands on Monday without any children. What?? I kept thinking I needed to pick her up somewhere. I went and visited babies without having to find someone to take her. I went to Target today and didn't buy Pull-Ups, fruit snacks, or bubblegum. I'm going walking without having to think about anyone else but myself. THAT'S not normal. I'm not tied to anyone or anything because Blake's off doing his thing with friends and Lance has been with Mark. It's just me.

My aunt came up and spent two days with me reclaiming my kitchen. All of Rachel's medical supplies are gone. I have so much cupboard space now. It's empty. The delivery service came and picked up all of the supplies because they are able to use them for missions. So, the delivery guys that came out here for five years made their last trip out (it's a father/son team). It was a tough good-bye.

I open up her locker and stand looking at her things. She won't need them anymore. I won't need them anymore. Rachel's locker will not be hers any longer. The contents and usage of it will change. It's not right. The drawer that I emptied in the bathroom to put in all of her diapers, salves, wetwipes, etc. after coming home from the hospital has now been reclaimed by extra rolls of toilet paper. And yet, everywhere we look there are reminders of her. Some of them don't bother at all and others make you bust into tears. Every time I look at her Littlest Pet Shop toys I break down. It's the last thing she played with and everything is stashed just the way she put it.

Tomorrow Lance gets his mommy all to himself. He's a planning away. Guess we're starting by going out for breakfast. Sure hope I can keep up! Blake said today that he's doing okay but that it sure is quiet around the house. Yeah, it sure is. While my aunt and I were having a glass of wine on the deck, it occurred to me that I was actually able to sit there uninterrupted. Nobody needed me to get them a glass of water. Nobody needed me to blow their nose. Nobody wanted to sit in my lap. Nobody needed me to wipe their butt. Nobody needed me. I was able to sit there and have a full, adult conversation. The boys are independent. Rachel was not. She was too short and too sick to be. My whole existence is being redefined. I'm finding out who I am without someone being attached to me. I haven't been that way for nine years. Nine years ago I was put on full bedrest while pregnant with Lance. That bedrest lasted four months. Then I had an infant. I've had someone on my hip since.

In so many circles I'm known as "Rachel's Mom". I never minded that. All of that's changed now. I will ALWAYS be Rachel's Mom, but it's in a totally different context. There will now be people from this day forward that I will meet who will have never met her. There will be people that we will meet who will never know that we had a daughter unless we tell them. That's weird. I loved being "Rachel's Mom". Don't get me wrong, I love being Blake's Mom and Lance's Mom, but "Rachel's Mom" was a totally different existence. My world has totally changed. I am once again a different person. No one knows who I am now. They can't, because I don't even know myself.

So we redefine, we revamp, we rework, and we restructure--our lives, ourselves, our home. We will never be the same. A part of us has been totally ripped away and we must learn to live a new life. So much is just being done on remote control right now. There is not one single person on this earth who has walked our exact walk. There is not one single person who can say that they understand or who knows exactly what we're going through. Yes, there are others who have lost children, but I'd be stupid to say that I understand fully what they're going through or them me. Each walk is different. Each loss is different. I've had miscarriages. They are different then losing a child full term which is different than losing a child at three, which is different than losing a child at seven, which is different than losing a child at 16, which is different than losing a child at 24, which is different than losing a child at 63. Everyone has a different experience. Just as each walk through grief is different. But, I think there's one thing that we can all totally agree on ... it sucks. It just plain sucks. I miss her.

I miss her smile. I miss her twinkling blue eyes. I miss her giggle. I miss her cheeks. I miss her hair. I miss her soft hands. I miss her gentle caresses. I miss her kisses on my lips. I miss her butterfly kisses on my cheek. I miss her whispered I love you's. I miss her tight hugs. I miss her smell. I miss her warm body. I miss her tears. I miss her small, perfect nose. I miss cleaning her ears. I miss her yelling at Lance to stop singing. I miss Blake carrying her piggyback through the house. I miss her helping me cook. I miss her carseat in my truck. I miss her playing Barbie.com on the computer. I miss laying in bed with her. I miss her wanting me to sit in the chair with her. I miss playing games with her. I miss her calling me on the phone. I miss her pitter-patter of feet across the floor. I miss everything about her. I just miss her. Oh, I miss her. Yeah, mourning is a selfish thing--look how many "I's" are in that paragraph.

Thank goodness I'm surrounded by fantastic friends who are taking care of me. I get my daily phone calls as they all check in on me--I'm SO thankful for that! They continue to come over even if it's just for a short period of time to give me a hug. They are getting me out of the house and planning outings. The Lord sure knew what he was doing when he created the relationship of friendship. I'd be totally lost without my friends right now. A HUGE thank you to each and everyone of my dear friends--you know who you are. I wouldn't be walking this road as well as I am without you. You've endeared yourselves to me for life--whether you wanted to be stuck with me that long or not! I love each and every one of you.

And so ... the journey down Rachel's Road actually continues. She's once again shown us one that's unpaved and uncharted. But we're walking it. Slowly. Very slowly. One step at a time. One day at a time. And as Mark so eloquently said that one morning, "Damn, the sun came up." Tomorrow's looking really good for the Rapture. The next doesn't look bad, either. Bring 'er on!

We continue to be members of the "Cancer Sucks Club". I continue to wear my pin. I don't even want to have a show of hands as to how many of you are in it with us. Because it sucks. It just plain sucks.

Specific Prayers:
~For the health and well-being of our entire family.
~For peace as we walk this unchartered road.
~For smiles and laughter.
~For coming to terms with it all.

CANCER SUCKS!

Monday, June 18, 2007 7:50 AM CDT

Today is the day that our new life begins. The day we start learning to live without that wonderful girl named Rachel. Today is the day that everything goes back to "normal". Today no one is coming over to be with us. Today Mark left for work at his "normal" time. Today is the beginning of the rest of our lives. And you know what? It sucks.

I stand looking at my house knowing that everything is the same yet everything is different. Everywhere I look there is a reminder of her. I hate those reminders, yet they are endearing to me at the same time. I need to do laundry. I know that there are some of Rachel's things in there. It's not the fact that her clothes are in there--that doesn't bother me at all. The part that bothers me is that I know it's the last time I'll ever wash any of her clothes. There will be an empty bin in the laundry room now--her bin. There will be an empty locker in the mud room--her locker. There will be an empty chair at the table--her chair. There will be an empty bedroom in our home--her bedroom. There's just emptiness everywhere. She filled this home with so much life, and laughter, and love, that it's missed immensely. I guess I now know a little bit of how it felt when Rachel and I were at the hospital ... empty. But, as Mark said, I always knew where you were at and that you were coming home. Yeah. Home.

So the emptiness settles in. The boys, of course, are doing better than their parents at this point--although I don't think we're doing too badly. There are errands to attend to, a new baby to see (our nephew, one of the pallbearers, and his wife had a baby boy on Friday), a house to clean, and projects that can now be attended to. The To-Do list continues to be added to. And the strange thing is that I'll be able to accomplish what's on there. I have five years of "making up" to do.

Lance asked me the other night, "What are we going to do this summer, Mommy?" "What do you want to do?" "HUH??" That's not the answer that he's used to. "Why don't you make a list of all the things you want to do this summer and then as we do them we'll just check them off." "Really?" he tentatively asked. "Really." "COOL!!!!!" Yeah. Cool. There's five years of making up to do with the boys, too.

Lance doesn't remember life any other way. He was three when Rachel got sick. His life has been nothing but cancer, too. Although not the patient, he doesn't remember life without it. This will be the first "normal" summer that he will be able to remember. And, there's nothing normal about it.

Blake was eight when she was diagnosed and going into the third grade. Now he's thirteen and going into the eighth grade. He's grown up so fast. He wanted to speak at Rachel's funeral. So, he and Lance sat down with Mark and I and talked about the things they remembered about their sister. We turned that into his "Remembrances of a Brother". He did SUCH a terrific job at delivering it!! We are VERY proud of him. He definitely has a knack for public speaking and speech class is not going to be ANY issue for him!! Here is "Remembrances of a Brother".

Many people have been telling me the past few days that my sister worshiped the ground I walked on. I know that the feeling was mutual. There are many things that Lance and I did with Rachel that are really going to change now.

The first thing is that we'll actually be able to win at board games because Rachel taught us what it was like to repeatedly lose at them. I even lost at Pretty, Pretty Princess! My mom said I looked beautiful in the necklace, earrings and rings I acquired during the game. Anything for Rachel! As a matter of fact, the only games I could beat her at were video games. We played a lot of video games both at home and at the hospital. They were something that we were able to do together even when she didn't feel good.

Another change will be our pig piles. The three of us would pile on top of one another a lot in what we called pig piles with little Rachel always being on the top. Sometimes I got tired of the piles because I was always on the bottom and I would roll over. Of course, Rachel would fall off and she didn't always find that funny. Sometimes she'd laugh, but sometimes she'd get mad.

Another change will be that our presence be needed at the hospital. Both Lance and I got to experience sleepovers at the hospital and eat hospital food. Some of the mornings that I was there Rachel would want McDonald's instead and I'd walk in the tunnel over to Abbott Hospital and get whatever she requested--usually pancakes and a cinnamon roll. She really liked it when either Lance or I stayed there with her.

Other things that we enjoyed doing that are now going to change are going bowling, going bike riding, going camping, and making snow forts. Our family often went bowling and Rachel has her own bowling ball. It's almost as big as hse is and she'd throw that ball down the lane without any help. Lance and I learned to stop asking her if she wanted help because she'd just get mad at us. She had to do it herself!

We have a bike that Rachel rode that attached to the back of my dad's bike. I sued to take that bike and Rachel and I would go for bike rides with Lance being on his own bike. We generally did this when we were camping.

The three of us loved to go camping together especially with our grandpa and grandma. We would play together at the water park and the swimming pool. Last summer when we went camping, the three of us jumped off the diving board for hours while Mom sat on the side of the pool and watched us.

The past winter we had so much snow piled up that we were able to make some huge forts inside of them. In one I could even stand up. Lance, Rachel and I, along with our dad, worked for hours on those forts. Rachel and Lance brought out their snowplows and dump trucks, too. Yes, Rachel had trucks. She loved remote control cars, semi's, and grandpa's train around the Christmas tree. Lance and Rachel would play tractors, hot wheels, airplanes, and motorcycles by the hour. Of course, Lance also got talked into playing restaurant and house whenever one of Rachel's friends was over! Because Rachel was sick, she didn't get to play with her friends as much as she wanted to so the three of us played together instead.

Rachel's illness did give us the opportunity to travel. We have wonderful memories of flying to New York for Christmas when Rachel was there for treatment. We also got to go to Disney World for Rachel's Make-A-Wish trip. All of those memories are things we will cherish for the rest of our lives.

We're even going to cherish the memories of how mad Rachel would get if either Lance or I tried to push her stroller instead of Mom, how she would never listen to us, and how she always copied everything we said until Lance would call for Mom to make her stop. Sometimes she didn't stop even then! But, thinking about it now makes us laugh. We remember her sense of humor, her smile, and those arems that were always open for a hug for her brothers.

Rachel, you may have worshiped the ground I walked on, but you were by far the bravest, strongest, and the most loving sister that any brothers could've hoped for. You were Lance's and my best friend and we thank you for that. We love you and we're going to miss you!!

Specific Prayers:
~For peace and comfort for our family as we learn to live without the little girl we love and miss so much.
~For the health of our entire family.

Friday, June 15, 2007 10:08 PM CDT

It's over. It's all over. And now the work begins ... learning to live without her. The house is so quiet. Lance was singing and no one was yelling at him to stop. There's only four in our vehicle every time we go somewhere. There is no car seat. There is no stroller. There is no one to carry. There is no one crawling into my lap. No more diapers. No more butts to wipe. No more blue blankie to wash. No more stuffed animals. No more dresses. No more pink. No more pink. No more pink ...

I walked through JC Penny and on the left was adorable pink camouflage pants--oh, she would've LOVED them!!! But, I don't get to buy them. I have no one to buy them for. I'll never get to shop in that department. I turned and looked to the right and saw my future ... surfing shorts and Sponge Bob t-shirts. Oh, yippee. Love my boys like crazy but, trust me, girls are just SO much more fun to shop for (and they APPRECIATE everything you get them!). But, we'll never get to go school shopping again. I'll never get coerced into buying jeans that I think ride too low or shirts that just don't cover those belly buttons. I'm going to save money because I won't have to "do" prom, or homecoming, or a wedding. Gads, I'd pay a million bucks just to be able to pay for those things!

I guess I'll never worry about her again, either. She's late! Where is she??? Will never go through my head. I'll never have to worry about some boy taking advantage of her or about her being teased in school because of her small stature. I will also never have to worry about her turning against God. I know she's in Heaven. I know she's with Jesus. If we can't have her, we guess she's in the next best place. At least we know where she is ... unlike some parents whose children are abducted.

Rachel's visitation and Celebration of Life were incredible. It was so humbling to see SO many people. The church was overflowing and then some. When I looked out over all who were there, it was so beautiful to see the sea of pink. What a tribute. So many men told me this was the first time that they had worn pink. And you know what? I didn't see a single guy there that looked bad in it! They should all wear it more often!!! My girlfriend told me that her husband called to say he was there and asked where was she sitting. She told him that she was in about the middle of the church and that she was wearing pink. He wasn't amused!! Hey, I thought it was hysterical!!

As was told in the guest book, I talked, Blake talked, and Rachel's Kindergarten teacher/first grade tutor talked. There was a flute/piano duet and the kids that attended the funeral came up front and sang Jesus Loves Me. It was absolutely amazing. Special people in Rachel's life also did the scripture readings and obituary. It truly was wonderful. She would've enjoyed it. At the cemetery we released 100 pink balloons while a bald eagle circled over top. The day was sunny and warm with a nice wind blowing that took the balloons on a wonderful journey as they made their way upward. At the luncheon we did a sandwiches, salads, and cake and also had a kid's table with macaroni and cheese, peanut butter and jelly sandwiches, jello, and other kid friendly food. It was a hit!

It truly was wonderful ... just wish we hadn't had front row seats. Would've been a wonderful service to attend if we hadn't had to plan it. But, we can wish a million things and it's not going to change the fact that Rachel died. It's not going to change the fact that we have a bedroom with no one in it. It's not going to change the fact that there's one less person living in our home. It's not going to change the fact that our lives have taken a complete turn off the road. It's quite scary, it's very bumpy, and dirt keeps flying in our eyes and making us cry.

So many people have asked that I continue to write in the journal. This website has always been about Rachel. She's no longer here to write about. I will have to ponder that one for a while. I guess we could ponder all of life's questions together and solve the world's problems together, huh? We'll see. I'll certainly update for a while about how our family is doing on this new journey, but the continued continuation of it will be something I will have to pray about. We'll just have to see what happens.

I've been asked and TOLD to put my "Meditations of a Mommy" on the website. So ... with no further ado, here is a bit of Rachel's Celebration of Life.

Mark and I want to thank you for being here today for Rachel and for our family and for the incredible kindness, support, and abundance of prayers that we have received throughout this journey. Your presence here today, the day we lay Rachel's body to rest, means so much to us.

The past few days have certainly been a time of reflection on the wonderful memories of Rachel--her life, her personality, her impact, and the lessons she taught us all. Rachel was a surprise gift from God for Mark and I. We were surprised by her conception and at her birth, we were surprised that she was a girl. We were once again surprised when she was diagnosed with cancer at the age of two. Nothing in any of the parenting books I had read had prepared us for the journey that awaited us. What I did learn, finally, from those books, and what other women on the playground taught me, and what well-meaning relatives, friends, and medical staff taught me, was that they couldn't really teach me very much at all.

Raising children is presented at first as a true/false test, then it becomes multiple choice, until finally, you realize that it is an endless essay--especially when your child is critically ill. And the funny thing is, no one knows anything. One child responds to positive reinforcement where another one can only be managed with a stern voice, a time out, and possibly a tap on the butt to get their attention. One child potty trains totally at the age of three and the next child not until they are six. Just as one child with cancer responds to one treatment but not the other where the next child with cancer responds just the opposite. Eventually, you stop looking at the parenting books and you learn you must trust yourself, especially when your child is diagnosed with a disease such as cancer. And, hopefully, you learn to trust God, too.

The day we prayed would never come, came. I know many here may be thinking that possibly trusting God led us astray over the past couple of months and that our prayers weren't answered. But is that really true? These past five years we've seen many prayers answered and many miracles happen. We did not get the ultimate miracle, though. We did not get our final prayers answered. No, WE didn't. But, did Rachel? What was Rachel praying for? Did God answer Rachel's final prayer?

As many of you know, Rachel was being visited by angels for several weeks before her death. We thought they signified confirmation of pending answered prayers. We thought those prayers would be ours. Instead, were they here to teach Rachel about heaven and to bring her comfort during first her periods of pain and then when the pain was gone, to bring comfort during her time of frustration of being locked in a body that she couldn't move and she couldn't communicate from? I can't stand here and honestly tell you that prayers weren't answered. Mark and I have pondered what we would've prayed for the last two to three weeks of Rachel's life it if had been us. We think Rachel prayed for peace and relief from pain and sickness either here on earth or in heaven, whichever path God wanted her to take.

We feel that Rachel got her final prayer answered. She believed that Jesus was her Lord and Savior and she loved Him with all her heart and soul. It says in the Gospel of Mark in the eleventh chapter to have faith in God. And if you do, that you'll be able to move mountains. It also says that whatever you ask for in prayer, to believe that you have received it, and it will be yours. Rachel believed in God. And Rachel moved mountains. She changed the hearts and minds and souls of young and old alike. Oh, yes, she moved mountains. And, we believe that she got her prayers answered.

Selfishly, we still want her here. The faithful side of me says she's in the best possible place she could be--in the arms of Jesus. But, the mommy side of me says that the best place she could be is where she's been for the last seven years--in her mommy's arms. But that was not meant to be. And so, this is how it feels to be held by God. This is how it feels when the sacred is torn from your life and you survive. This is what it is to be loved and to know that the promise was when everything fell, we'd be held.

God didn't turn his back on us. He answered prayers--many of them, including Rachel's final one. No, God didn't answer the final prayers of those of us left behind, but we are certainly being held close as our God comforts us. And, if the angels showed Rachel any bit of heaven, can we blame her for wanting to go? We also know that although she may have gone with the angels, that she isn't one of them. Nowhere in scripture does it say we become angels after death. As one of our friends put it, "If anyone can find in the Bible where it says we do, I'd like to know where it's at." We have no doubt, though, that she was met by both my mom and Mark's dad, who both passed away just two years ago.

Thank you, God, for allowing Mark and I the privilege of being Rachel's parents, for blessing us with her presence for this dear, if short, time. Thank you, Rachel, for reminding us to keep our eyes focused on heaven and to spend our time on earth doing the things that really matter. Thank you for reminding the world that Jesus died so that we could spend eternity together and that this isn't good-bye. We WILL see you again. And that assurance brings great comfort and peace to our broken hearts--the hearts that have Rachel-shaped holes in them.

Rachel, you were the best daughter and sister in the whole world. We love, you miss you, we will treasure our memories, Sweet Pea, until we meet again.

Specific Prayers:
~For God to hold our family close and give us peace and comfort as we learn to live without our most treasured daughter and sister.

Tuesday, June 12, 2007 1:13 AM CDT

No, WE didn't get our final prayers answered ... but did Rachel???? Something to ponder.

If you're coming to Rachel's Celebration of Life, you can wear black. We don't care. You can wear purple. We don't care. You can wear a Hawaiian shirt. We don't care. You can wear polka dots. We don't care. But as for us, we'll be wearing PINK!!!! Yes, men and women alike are donning pink in honor of one very special and PINK girl. Pink ties, pink shirts, pink dresses are flying off the racks around here. We really don't care what you wear as long as your three B's are covered (boobs, butt, and belly button). We REALLY don't want to see any of those even if you are wearing pink!

Because you've asked, if you feel so inclined, you can bring a salad to the funeral. Please remember to take your bowl before you leave though! I'm not tracking anybody down afterwards. If you have any questions, please email me.

VISITATION
Wednesday, June 13, 2007
4:00 to 8:00
White Funeral Home
20134 Kenwood Trail
Lakeville, MN
952-469-2723

CELEBRATION OF LIFE
Thursday, June 14, 2007 at 11:00
There will be a visitation from 9:00 to 11:00
Christiania Lutheran Church
26691 Pillsbury Avenue
Lakeville, MN
952-461-2283
Interment at East Christiania Cemetary, Lakeville
There will be a luncheon afterwards at the church

Saturday, June 9, 2007 10:10 PM CDT

And so I write one more journal entry that I never thought I'd have to write. As I sit here with tears streaming down my face, I wonder how so many of us misinterpreted our "promises" from God. We are thankful for all of the angels that filled our home and gave Rachel peace. We truly feel that Rachel wasn't telling us the full story about what the angels were telling her. Her and the angels had secrets. I guess that's okay because what would we have done with the information?

Rachel did not suffer in pain in the end. She told me on Thursday that she had no pain and we spent at least four glorious hours together with her in my lap ... where she's been for seven years. At that point, death was not evident. It wasn't until Friday morning that things started to not go in the direction we wanted.

We don't understand, we're confused, we're shaken, but we are not beaten. It will be one day at a time, but we continue to say, "It's okay to be mad, and it's okay to be mad at God. But don't get bitter ... because then Satan wins." He didn't win. He won't win. We're not giving him one inch. He should've moved on a long time ago because apostasy is not in our vocabulary!

Rachel is perfect and whole. Rachel will never again endure any pain. Rachel is with our Lord Jesus Christ and with her Nana Eide and her Papa Hansen. We are thankful that they were there to guide her passing into the next dimension. We're pretty positive that Rachel went running into their arms and once she saw how beautiful it was there, she chose not to come back. We can't say we blame her.

Part of us is extremely jealous that she is now able to look into the face of Jesus and be held by our Lord. What a glorious thing!!! But, selfishly, we miss her. We miss her terribly. I've always said that the house is just so quiet when even ONE of our kids is at a friend's or some place besides home. It's just different. And now, it's just so quiet. It's different. It's empty. There's something missing.

I crawled into bed last night and said, "Why is it SO quiet????" Then I realized that that was because her oxygen machine was no longer running. "It's dark," I exclaimed as I realized that her fish light wasn't on. I layed in bed and I could smell her. But I couldn't touch her. I couldn't find her. I didn't want to dream. I wasn't ready to see her. I slept maybe an hour just before sunrise. We woke and Mark said, "Damn, the sun came up. I was kinda hoping it wouldn't." Yeah ... me, too. Today would be a good day for the Rapture! Tomorrow is looking good, too.

Today we started making arrangements and we also attended the wedding of my dad. The wedding was very nice but we already had to have family pictures ... with our smaller family. It wasn't right. It wasn't fair. She's supposed to be there being held by her daddy. But, she wasn't there in body. I signed the guest book and when I finished writing Lance's name I busted into tears because I realized that there was no more to write except our last name. I was angry at myself for signing the book because I certainly wouldn't have had to.

We now make arrangements to celebrate her life and return her body--her vehicle--which failed her terribly, to the ground. Too bad bodies didn't have lemon laws. She certainly could've used one! Because of my dad's wedding and because of the funeral home already being booked for another funeral, Rachel's arrangements are as follows:

On Wednesday, June 13, 2007, there will be a visitation from 4:00 to 8:00 at White Funeral Home, 20134 Kenwood Trail, Lakeville, MN (952-469-2723). On Thursday, June 14, 2007, there will be a visitation from 9:00 to 11:00 at Christiania Lutheran Church, 26691 Pillsbury Avenue, Lakeville, MN, (952-461-2283) with the funeral following at 11:00. There will be a luncheon afterwards. June 14th is my mother's birthday. How ironic is that?

So many people have asked what they can do, and I will update another journal entry on what things we may need. We thank you for your generous offers and for your continued prayers as we continue to walk a very bumpy Rachel's Road. Although we've faced death with parents, this is a totally different road--one no parent should ever have to travel.

And so, with heavy eyelids I ask that you pray for us, that you give thanks for the gift and blessing of Rachel, that you give thanks for the miracles that we DID have with her--there were many, we just didn't get the ultimate one. Although we are questioning some things right now, there is no doubt in our minds who our Lord and Savior is. He is the same today as he was yesterday and will be tomorrow. Jesus Christ, the Son of God, is our Redeemer and is who will give us everlasting life just as he is giving it to Rachel right at this moment. Although we miss her terribly, we know that it's not goodbye forever. We WILL see that beautiful child again.

Friday, June 8, 2007 2:47 PM CDT

Dear Caringbridge Family,

It is with great sadness that I must tell you that Rachel Lynn has gone to the arms of Jesus late this morning. Jodi will update this journal with more details when she can. Thank you all for your prayers.

Jahna

Sunday, June 3, 2007 3:49 PM CDT

Rachel continues to have a temperature with over 104 degrees being hit last night. Although we do see her eyes open a bit, it isn't fully and it isn't a lot. I do think that once we get a pediatric oxygen mask that fits her (hopefully it will be here tomorrow!) that that may change things. Right now the mask that we have goes over her eyes and up to her eyebrows. It just can't be comfortable to have that mask over your eyes or have oxygen blowing in them. I'd keep them shut, too. We're waiting for the box bringing new ones!

She hasn't talked today except to tell me "yes" she wanted some water. She's drank 10 ounces of water so far today and also drank 4 ounces of a "shake" (meal replacement kind of thing). I made it with whole milk and threw in some fruit, so hopefully she's getting some nutrition into her! She still isn't moving, either.

We again lowered the narcotic and she isn't giving any indications of pain. Hopefully that's a thing of the past! Several weeks ago, Rachel started sharing with us about all of the angels that were in our house. They told her that she was going to have to endure the pain a little longer but that it would soon be gone. This was when she was still up and walking and totally coherent. We were getting angel sightings on a daily basis. It was the coolest thing ever!! Wish I could've seen them. She would describe them to us. I was telling her to ask one of the angels something and then I asked another question and she looked at me with this disgusted look on her face and said, "Mom, why don't you just ask the angel yourself? The angel can hear you." Uh .... uh .... yeah. But Rachel, MOM CAN'T SEE IT OR HEAR IT!!!! I'm sure the angels continue to be all around us, but with Rachel being incoherent, she's not able to tell us about them.

One day I was laying in bed next to her while she was napping. All of sudden her eyes shot wide open ... and I mean WIDE open. Her pupils were almost as big as her iris'. She sat staring. Just staring. No blinking at all. It was freaky. Finally I said, "Do you see something, Rachel?" "Yes. Angels." "Oh." I continued to watch her. "What are they doing?" "Watching over me." I continued to watch her, too. All of a sudden she jumped. "Did they touch you, Rachel?" "One did." "How many are here?" "Ten." I keep looking but I just can't see between the dimensions. Sure wish I could. She says they're beautiful. We know for sure that at least one of the angels has come dressed in military garb--ready for battle. I've heard that before from other people who have had miraculous healing and have seen angels. Others have been in white robes, had crowns (halos), and wings.

She told us that the angels told her that God was going to make her better but it would be a while. She told me one night that the angel that had been there had gone to check on Blake and Lance, whom were both in bed, and that it would be back and that it had told her that other angels would be coming later. Although some of the angels were the same, the circumstances changed. One night I told Rachel to not make stuff up just because she knows that Mommy likes to hear that the angels are here. Boy, did I get a dirty look! And then she gruffly said, "Mom, I WOULDN'T lie to you about something like that!!" Then she mumbled something about how she wasn't going to tell me anymore. I quickly apologized and said that I just had to make sure and that I wished that I could see them, too, and how privileged she was. Sometimes as a parent you just feel SO stupid. Oh, well. My parents went through a "learning curve", too!! Tee hee!!! They were SO smart when I was young, they were SO stupid when I was a teen, and when I got into my mid-20's they were SO smart again!! Amazing how that happens ...

So, we're having angel sightings on a regular basis. One evening I had this terrible pressure on my chest. It felt like something was sitting on it. It was painful to breathe and I was having a hard time breathing. I felt the need to call people and have them pray because I just felt as if something was up in the spiritual realm regarding Rachel. I asked Rachel if there were any angels around. She said, "No." I was thinking to myself that I wished they were there because I didn't have a good feeling about what was sitting on my chest. About ten minutes later Rachel walked into the kitchen and stood looking at the dining room table. "Mom, there's a whole bunch of angels in the dining room." "Really?" "Yeah." "What are they doing?" "Looking at us." My chest tightened. Looking at the demon sitting on my chest, maybe???? "Mom, they're talking to God now." Cool. Keep talking!!! Over the course of the evening, the tightening slowly lessoned until it was gone. It was freaky. Really freaky. I'll keep the angels around, thank you very much.

My dad is getting remarried this coming Saturday. Not only is he getting remarried, but he's marrying my best friend's mom. So, my best friend will become my sister in six days! Tee hee!!! Kinda cool, ain't it?? (I know, ain't ain't a word!) Anyway, I was talking to my friend about our parent's upcoming wedding yesterday. I was sitting in the bedroom with Rachel and we were chatting about what we were going to do with the wedding/Rachel situation. I was talking about having somebody video tape it so that Rachel could watch it so that she would be able to see Grandpa getting married. I ended that sentence with, "I just wish she could be there." All of a sudden I heard this croaky, "I will." I looked at Rachel and I said, "WHAT?!?!!? "I will," she croaked. "You'll be at Grandpa's wedding???" I asked her. She nodded yes. So ... we have a goal. A pretty steep one at that. Rachel has every intention of being at that wedding. So, may as well make it good ... we're asking that Rachel be talking normally, walking on her own, and breathing without oxygen by Saturday. Means I've gotta buy the kid some shoes!!! :-) What a problem to have. If things keep going the way they are with the narcotic, she'll be off of it by Friday!!!! So, that's our week's agenda. We're going to be busy, aren't we??? We've asked for it, now we just have to believe that it's going to happen.

WE BELIEVE!!!!

Specific Prayers:
~Thank God for the healing he is doing in Rachel.
~That Rachel be able to make it to her Grandpa's wedding on Saturday talking normally, walking on her own, and breathing without supplemental oxygen. Then start thanking Him for it.
~Thank God that Rachel is being weened off of the narcotic and will be off completely on Friday.
~That Rachel become coherent, talking and moving tomorrow.
~For angels to continue to stand guard in and around our home.
~That Satan lose any and all strongholds on Rachel and all members of our family.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Friday, June 1, 2007 2:10 PM CDT

Rachel got her blood transfusion on Wednesday. She was able to maintain her oxygen stats beautifully after that! No more worrying that moving her was going to cause terrible oxygenation issues! After the blood transfusion was done, Rachel was grunting at us whenever we talked to her. She was also lifting her eyebrows and would squeeze my hand when I asked her to. No eyes open, though.

Yesterday we continued to lower the narcotic. She did wake up when her tutor, Ms. Cummings, came to see her. She looked at the pictures that her classmates had sent for her, too. After Ms. Cummings left, I asked her if she was hungry and she nodded yes!! So, I got her a teddy bear pancake and she actually ate two bites of it and drank about 2 ounces of water!! WOO HOO!!! But it was all down hill from there.

I had started her IV vitamins about 30 minutes before she ate and she has been having some issues handling those vitamins the past couple of weeks. I was running them very slowly but she still reacted badly to them. Her heart rate went up, she was having a harder time breathing and her oxygen stats weren't as good. After a time, her doctor and I decided to give her a very small amount of the sedative. That ended up making her comfortable but it also put her to sleep.

Rachel slept until noon today when Ms. Cummings came again. I think we'd better just keep that tutor at our house!! Rachel started grunting when she heard her and then pretty soon we saw those eyeballs!! She also told Ms. Cummings that she loved her!! Too precious. After she left, Rachel just closed her eyes again. I did read her a book but I don't think she cared. Guess she thinks she doesn't have to put on a show for me! And she's right.

Hopefully we'll continue to see more and more of Rachel and hopefully we'll be able to continue to dial down that narcotic. That lump on Rachel's right side is almost completely gone. If you didn't know there was a lump there, you would have no clue. There's just a very small rise there that isn't even noticeable if I don't point it out to you. PRAISE GOD!!!

Rachel continues to have fevers, but as the hyperthermia proved ... heat kills cancer. So, if this is how God is getting rid of the tumors, so be it. We will continue to deal with all of this one day at a time. Rachel continues on the antibiotics and her lungs are sounding better although they aren't normal yet. We have no idea what the tumors on the inside are doing ... we just know that the one that was sticking out is no longer doing that!! We "patiently" await the day that she jumps out of bed with no oxygen or narcotic attached to her. The praises to God that will be sung that day will be heard around the world!!! You'll be able to hear us singing all the way in Alaska, Anna Mae!! :-) We continue to give thanks to Him for the healing that is happening in front of our eyes. PRAISE BE TO GOD!!!

WE BELIEVE!!!!

Do you believe in angels???? REAL ones??? :-) Hmmmmmm ... why would she ask that??? Oh, and whoever is praying for us to have patience ... please STOP!!! Really, please don't pray for us to have patience! You only get situations for you to build your patience, you don't supernaturally just get patience!!! Be careful what you pray for!

Specific Prayers:
~Thank God for the healing being done in Rachel's body.
~For discernment for Mark and Jodi.
~That the Holy Spirit fill our home and our hearts.
~That Satan have no hold on any part of Rachel or her family.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, May 30, 2007 9:16 AM CDT

It's been a quiet, active, exciting, and frustrating weekend. How's that one for you? Rachel continues to be completely bedridden with her hardly opening her eyes at all. She was awake enough on Saturday to eat pancakes and hold her kitty--although she didn't open her eyes at all. She told me that evening that she wanted to be more awake.

So, Sunday morning we tried the ritilin that the pain doctor said should counter-act the drowsiness Rachel was having with the narcotics. Rachel had her eyes open but she looked completely drugged and she was terribly agitated. She was also having a hard time keeping her oxygen level where it was supposed to be. So much for that. I finally asked her if she wanted to go to sleep and she was ALL for that so we gave her a small amount of sedative and off she went to sleep. She hasn't been awake since.

That evening Rachel's temperature went up to 104.5. YIKES!!! She's been battling high temperatures all weekend. We've been having to do Tylenol suppositories on her. We also started the steroid back up because that can help with fevers. We started two different antibiotics--one is an anti-fungal and the other is a broad spectrum antibiotic as we don't know what she has if she has anything as nothing has grown out in her cultures. It could be something in her lungs but the only way to find out would be to do a bronchoscopy and we're not going to do that. We've continued to fight the high fevers off and on but right now she's at a normal temperature.

We have found out that Rachel is one of the 10% of Caucasians that takes a longer amount of time to clear this certain sedative. Most people it's about less than an hour for the half-life. Not Rachel. Typical, huh? We've also found that Rachel's carbon dioxide level is quite high and that that's why she's not waking up. We can thank the narcotic for that one. We have been lowering the narcotic in hopes that she will wake up and haven't used the sedative for several days. Of course, we're being told that this is possibly the way that "it's" going to take it's course.

Besides her blood gases being out of whack, Rachel's hemoglobin has taken a drastic turn downward. We aren't exactly sure why but there are theories out there. Her hemoglobin being so low could also be a part of why she's not oxygenating well. She's got the oxygen mask on continuously and the oxygen setting is rather high. We're working on getting her a blood transfusion in our home today. They had to have what's called a "type and cross" for the blood (they take some of your own blood and put it in with the blood to be transfused, I believe--something to do with the antibodies, I think). Being that we didn't find out that her hemoglobin was so low until around 9:30 last night, they didn't have the staffing to send out a nurse to draw the type and cross. We were going to have to wait until today to get that, and then maybe not get the blood until tomorrow. Her numbers are critical but no one in home care is moving too fast because, "We're only doing this for quality of life." We're bothering them, don't you know. I believe the entire hospital thinks that we're sitting in a happy, delusional space about Rachel's health. Hmmmmm ... I sit here 24 hours a day, 7 days a week. I'm not stupid. I'm completely aware of Rachel's status. But, we have something they don't have ... faith. Complete and peaceful faith. We'll get into "Jodi's delusion" in another post. :-) Anyway, because they didn't have the staffing, they ended up sending out a cab with the tubes needed for the blood and I drew it up and sent it back with the cab to the hospital. Of course, it was after 1:00 am, but who's looking at the time??? I called this morning to see when a nurse was coming out with the blood and they still didn't have a concreted plan. I'm waiting for a return phone call.

Okay, so the numbers aren't so hot. Okay, so she's not awake. But guess what?? Rachel has had a lump on her right side (on top of her ribcage) ever since her pain issues on that side a couple of months ago. That lump is smaller!!! No delusion here ... it IS smaller. It's even smaller today than it was yesterday. PRAISE GOD!!!!!

We may not have gotten the immediate healing we want. There may be continued bumps in the road. But that doesn't mean that there isn't healing going on. We must continue by faith and not by sight. As I said, the "delusional" post is coming!

So we continue to put one foot in front of the other. We continue to do what we have to do. We continue to wait upon the Lord.

WE BELIEVE!!!!

Specific Prayers:
~That Rachel's tumors continue to decrease in size.
~That Rachel's breathing become less stressed and that she hold her oxygen levels without needing supplemental oxygen.
~That Rachel's blood gases be normal and that she be able to be awake and functioning normally.
~That Rachel's fever's cease and any infection or virus be cured.
~That Rachel's blood counts be normal.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

P.S. You should see her hair coming in!!!! :-)

Friday, May 25, 2007 8:56 AM CDT

First things first, it is not a definite about keeping the kitties yet. Just because Rachel wants them doesn't mean she's going to get them. Heck, I wanted a horse and didn't get one. I wanted a dog, too. Finally got that and what a disaster that turned out to be (huh, Dad?). Okay, so a cat is pretty minor compared to some pets, but I'm not sure that I'm ready to go back to the shedding, the vomit, the litter box, the hairballs and all of that jazz even though I do miss having a cat around. It's been 2 1/2 years since our cat died and although I've missed her, I haven't missed anything else about owning a pet!! The kids are going to have to put up some REALLY good reasons to convince Mom and Dad that having pets in the house again is a good idea--no matter how cute they are!

Rachel had her blood redrawn yesterday and the platelet and glucose levels are real. There are several reasons why her platelet level could be where it's at, but we're not sure it really matters at this point. Being that it was at 25,000 yesterday, we're not going to do anything about it unless she starts to actively bleed. We continue to ween her off of the steroid--which they truly feel is the glucose problem--and her last dose will be tomorrow. Going off of that will certainly make her face less puffy but it could also make her appetite decrease.

The other thing they checked yesterday was her blood gases. We found that she's retaining carbon dioxide and that can make you tired. She's not exhaling like she should be which is probably being caused by the narcotic because it can affect your respiratory system. So, we started lowering the narcotic even more yesterday. I came down by two more increments each about four hours apart and this morning I've actually seen eyeballs and had unslurred speech. But, she also has complained of pain. Shoot! I upped the medicine just a tad so we'll see what happens.

Yesterday showed some wonderful improvements, too! She was only retaining 100% oxygen level in her blood with the concentrator (machine that changes room air into pure oxygen) pushing air at 10 liters per minute (that's the highest setting). Over the course of yesterday afternoon I was able to turn it down and it's now sitting at about 1.5 liters per minute!!!! She's maintaining 100% with that low setting. She still needs to have the oxygen as as soon as she removes the mask her numbers start to drop, but we're thrilled that the machine is able to be turned down so low. Also, her heart rate which was sitting in the 150's yesterday is now steadily in the one hundred teens! I've even seen a 109!! Also, just like yesterday, even though she continues to breathe with diaphragm involvement, it is still peaceful breathing.

Hopefully today will bring bouts of sleeping between bouts of wakefulness without pain. Would love to see her be interested in reading a book or doing a small craft. She did ask me to paint her toe and fingernails the other day so she's sporting dark pink nail polish with flowers on the big toes and thumbs! She's looking quite stylish! Also, her hair is beginning to come back. Her eyebrows look so dark--they always do when they come back but everything has always gone back to blonde in it's own time.

Besides Rachel's tutor and guidance counselor who grace us with their presence several times a week (we love it!!), yesterday brought her oncologist, primary clinic nurse, and nurse practitioner. They called and said they missed us and wanted to come out. That was quite cool--Rachel even said so. But, once again, no one can out-do the visit from one very special kitty!! I think kitty (excuse me--Grayie [I think we may need to change that to Grayce or Graycie]) is getting used to being put into bed with Rachel because "it" (who can tell the sexes of those tiny little bottoms?!?!?!) snuggled right up between the crook of Rachel's arm and her chest and laid there. It would even lick Rachel's hand and arm. It was so precious! Rachel is looking forward to their visit today. It sure is wonderful that Tammy takes the time to do this for Rachel and it sure is wonderful that Momma kitty doesn't mind Tammy "stealing" her kittens for a while--they are only three weeks old!!

We're looking for a peaceful day today with more healing done and improvements seen. Our God is a GREAT and WONDERFUL God. There is NOTHING that he can't do. WE BELIEVE!!!!!

Specific Prayers:
~Thank God for the improvements seen yesterday.
~Thank God for the continued healing of Rachel.
~That Rachel's pain cease.
~That Rachel's breathing continue to improve by using her diaphragm less and needing the oxygen even less.
~That Satan lose any and all strongholds he may have on Rachel and her family members.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, May 24, 2007 10:10 AM CDT

Rachel pretty much is zoned. The drugs are high enough to keep her out of pain, but they keep her totally out of it, too. She will eat and answer you when you talk to her, although she keeps her eyes shut and her speech is slurred. Last night she told me that she wants to be awake. So, this morning I turned down the narcotic a little bit to see if we can find the point where she's comfortable yet awake. Not sure we can find that happy medium but we're certainly going to try.

Rachel started to run a temperature yesterday. Her heart rate is also elevated (which would go along with the temperature). A nurse came out and drew blood yesterday and it showed that Rachel's platelets are only 17,000. That has everyone very confused. It also showed Rachel's glucose level at 317--that's VERY high. So, they are coming out again today to draw more labs to make sure that the numbers are real and not just a bad lab draw. Just in case they are real, though, the wheels are starting to turn on how we can get a platelet transfusion here at home and the steroids are being weened. They also took cultures for a bacterial infection yesterday so we'll wait to see what those show. It's always something, isn't it??

Rachel asked Tammy to bring her chi tea and the kitties, so that's what Tammy did! What are godmothers for, huh??? Over the course of the evening, Rachel did drink almost the entire cup of Starbucks chi tea and she got to cuddle with those kitties again. "Her" kitty cuddled right up next to her. It was so sweet!!! Rachel did ask if she could keep the kitty ... of course, Tammy said YES!!! This could get interesting!!! Do you see another cat or two (Lance has claimed the other one) in our future???? Oh, boy!! Wonder what Daddy's going to think of this one ...

Although Rachel's breathing continues to be labored, it does seem more peaceful if that makes any sense at all. We will take one day at a time and we will rejoice and give praise with each small improvement.

WE BELIEVE!!!!!!

Specific Prayers:
~Thank God for the healing He is doing in Rachel's body.
~That Rachel's breathing becomes less labored.
~That Rachel's temperature return to normal.
~That Rachel's heart rate return to normal.
~That Satan completely lose all holds on Rachel and her family.

WE BELIEVE IN A MIRACLE FROM HEAVEN IN 2007!!!!

Wednesday, May 23, 2007 6:24 AM CDT

The last couple of days have been rough. On Monday Rachel just couldn't seem to get comfortable no matter what she did. She would give herself bolus after bolus of narcotic (there's a button on the machine that allows her to give herself more medicine--only a certain amount and only every so often) and would end up totally zoned and out of it but she still wasn't comfortable. Her breathing also changed that day--not in a good direction.

Monday night was also horrid with Mark, Rachel and I not getting much sleep. Tuesday morning brought with it even worse breathing. We were able to get Rachel to wear the oxygen mask for the night, but she was totally fighting us yesterday morning and she really needed it.

After much prayer, Rachel settled down, her breathing evened out, and she went to sleep. She slept most of the day yesterday but woke up enough to say that yes, she did want Tammy to bring over teddy bear pancakes and the kitties!!! So, last night for supper Rachel got wonderful teddy bear pancakes with chocolate chips on them and whipped cream. She loved them!! But the best part was that Tammy brought over the two baby kitties that we had gone to see just two weeks ago. Rachel laid in bed with those two kitties crawling on her. She loved them up good.

Rachel had a good night last night so that means we all slept. We'll see what kind of day we have today. Thank goodness that although her breathing is still labored, it isn't anything like what it was yesterday morning. Our faith is certainly being tested, but we will pass this test!

WE BELIEVE!!!!

Specific Prayers:
~Thank the Lord for a good night's sleep last night.
~Thank the Lord for the healing that is being done.
~That Rachel's pain cease.
~That Rachel's breathing become unlabored.
~That Satan lose any strongholds he may have on Rachel or her family.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Saturday, May 19, 2007 7:05 PM CDT

The vomiting has pretty much ended. We haven't had any puke for several days now although once in a while she still wants the bucket near by. We are very thankful. We are once again dealing with side pain (lower left side) and we figured it was once again from lack of pooping. She's refusing her poop medicine because it tastes HORRID. We're working on that one. I think I've figured out a way to get a different kind of poop medicine into her without her knowing about it, it just takes longer to work than the horrid tasting one.

Rachel is pretty much on oxygen all of the time because it makes her feel better even though she's still doing good in the holding her stats area. Her heart rate has continued to fall during the week--this is VERY good as it was ridiculously high when we brought her home from the hospital a week ago. It's finally back into the normal range.

We continue to have good night's sleep and last night I didn't even use any of the "sleepy" medicine on her at all. She continues to eat but we've noticed a drop in the appetite as we've lowered the steroid medication she's been on. We may end up upping that again even though it does make her cheeks very puffy.

Rachel has been a bit short of breath but the oxygen does help with that. She continues to walk, eat at the table, and today her and I did a craft. She spends most of her time in the recliner or in bed. We are homebound as she's just not up to going anywhere. I did take her outside a couple of days ago (besides the large machine on wheels that takes room air and turns it into pure oxygen--pretty cool, huh?--we also have portable tanks) and we watched the boys play.

She pretty much just wants me to be with her if she's awake. No one but Mommy seems to do. I'm going a bit stir crazy but that's the way it is. I have managed to catch up on my laundry and have actually found my laundry room again. That is a good feeling. Besides that, I spend a lot of time with her.

We continue to wait upon Rachel's complete outward healing and we continue to believe.

It says in James 1:6, But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. That man should not think he will receive anything from the Lord; he is a double-minded man, unstable in all he does.

So, we BELIEVE!!!!

Specific Prayers:
~Thank God for the miracle of healing in Rachel!
~That Rachel's pain and nausea completely cease.
~That Satan lose all strongholds on Rachel or anyone in our family.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Tuesday, May 15, 2007 12:38 AM CDT

Rachel's vomiting has definitely increased over the past two days. She couldn't keep any food down yesterday morning, although Sprite and water worked. The pain doctor had me up one of the meds that's supposed to help with nausea and it ended up knocking her out. She ended up sleeping all afternoon. Guess she's not vomiting if she's sleeping. Poor honey. Same thing has happened today although the vomiting isn't as bad ... only once this morning. But she continues to say that her tummy hurts ... but she wants food. She's on a steroid and that just makes her HUNGRY!!!!!!!!!!

We continue to see small improvements though. She's definitely holding her oxygen stats better. So much so that we didn't even have the monitor on her last night. And, I'm happy to say, last night was the best night's sleep I've had in several months! We were only up once during the night and the rest of it was SLEEP. It was SO awesome!!! I feel totally rejuvenated today and because I'm not tired and Rachel's currently sleeping, I have accomplished quite a bit (like finding my kitchen counters and actually being able to CLEAN the kitchen!!!). Oh, how we appreciate the small things.

Rachel was out of bed quite a bit yesterday after her nap and even played a game on the floor in the living room with Blake. She's also continuing to eat at the dining room table. We'll take each improvement!

We continue in prayer and expectantly await the day that Rachel jumps out of bed with no pain or nausea and she has clear scans. Our God is great and wonderful!!!

We Believe!!!!!

Specific Prayers:
~For Rachel's nausea and pain to stop.
~Thank the Lord for physically healing Rachel here on earth.
~That Satan lose all strongholds he may have over Rachel and our family.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Sunday, May 13, 2007 2:36 PM CDT

We have continued to try and manage Rachel's pain with different avenues. Thursday we added another drug in hopes of ending the stomach issues, but it seemed it only made them worse. She was up at midnight on all fours crying about her tummy. It was decided earlier in the day that if that didn't work that we would go into the hospital on Friday and try to work with a sedation drug that at low doses often helps with pain and nausea. This is the one that they wanted the DNR for. So, Friday morning the wheels started turning to make that happen.

We went into clinic and, with usual hospital style, sat around for four hours until she was actually hooked up to the drug. We ended up staying at the hospital overnight because it took 4-5 hours to get her to the point that the doctor felt he could go home and manage it from there, if needed. It was interesting as we had one on one nursing and one on one doctoring. The doctor and the nurse just stayed right in the room with us continuously.

While there, we found that Rachel isn't holding her oxygen levels where they need to be, so she was put on blow-by (she won't even think about wearing a mask or nasal canula so it's a tube that just blows air at her). I was very adament about not wanting to be "admitted" to the hospital and only being there on "short-stay" status. I was not interested in having fluids hung (so she'd get edema again) or having them do this or that to her. With the short stay status I have a bit more control over what's going on. To be considered short stay you must be there 23 hours or less.

Things were looking promising in the beginning with the sedation drug. She drifted off into a restful sleep which we weren't sure if it was from over sedation (too much drug) or if it was that she was now out of pain and was catching up on some much needed sleep (I keep trying to get a drip of that stuff for myself but just haven't been able to make that work, yet!). Her heartrate was nice and low even though she has been laboring a bit more to breathe over the past week. They aren't entirely sure if that's from disease, a side-effect of the narcotic that she's on, or exactly why she's doing that.

She slept most of the early evening and then was up late evening wanting to eat, go potty, and she was actually rather irritable. We ended up giving her a small amount of sedative to go to sleep with. She slept about three hours and was then again up to potty, wanting to eat, and was TERRIBLY crabby. HORRIFICALLY crabby. I couldn't get her to settle down for nothing. Finally, three hours later I asked the nurse for the smallest dose of the sedative that had been ordered for her. I specifically said, "I want the .7 dose." When the nurse came in with the syringe I asked her, "Is that the .7 dose?" "Yep!" she replied. She gave it to Rachel and off she went to sleep. I layed down and woke back up about two hours later. The drug has a half-life of about four hours. But Rachel looked wasted even in her sleep. At the four-hour mark (when she should've been more than awake) she was still out cold. I said something about how unusual it was for her to still be so out on that amount of drug when the day nurse told me that the night nurse who gave her the drug had told her that she had given Rachel the 1.5 dose. WHAT????????????? I was SO mad!!! I'm still mad.

According to the day nurse, the night nurse didn't see any other dose but the 1.5 listed in the computer. Okay, so why not come back and ask me about it?? I would've shown her the WRITTEN orders which SHE ALSO HAS A COPY OF!!! And then to LIE straight to my face when I asked if that was the .7 dose?!?!?!!? I can't even believe it. I have really lost my trust in hospital nursing staff. It really makes me wonder how many other mistakes have been made on Rachel that we've never caught and how many times this really happens on a floor full of patients. First this same nursing staff programs a pump wrong and overdoses my kid, now they give her over twice the amount (OF THE SAME TYPE OF DRUG that they programed the pump wrong for) that I ask them to give her. What's up with that???? Thankfully, no harm was done, but it's the whole idea of it.

Overnight Rachel's breathing dramatically changed for the worse. She was REALLY laboring to breath with her entire diaphram, chest, and even her shoulders getting into the picture. It was painful to watch. Also, her heartrate was very elevated. Of course, they don't know why but are pretty positive that it's the disease and start giving us timelines (just like they did last week but she's blown through that one already). Everyone is dour and looks at me with their head hung and you can just read what's going through their minds. Every single one of those people is putting a death curse on Rachel. One's that we have to keep breaking with prayer.

We got out of the hospital and came home on oxygen. I think most of them were thinking they'd get a phone call during the night last night. When are they going to learn? They keep walking by sight instead of by faith. We were told at diagnosis that she only had a 20% chance of being alive in five years. Guess what? It's been five years! We've been told she only has three months to live. Guess what? It's been almost three years since we were told that. We were told she only has one to two hours left to live. That was over two years ago. We were told one week. She blew through that. When will they learn??? Our creator is the only one who knows the date and time of our deaths. Our creator is GOD. NEVER underestimate God. NEVER underestimate the power of a believer's prayer. God has a purpose for this child. We don't know it. We don't understand it. I will never begin to put a timeline on it.

We were not happy with how the sedation drug didn't work for Rachel at all so we have chosen another line of battle against her pain. It was decided to give her a dosing schedule of a narcotic (the one she's been on for a week) plus another drug that would possibly leave her sleep for 12-16 hours. The pain doctor really felt that if he got her comfortable, that she could sleep an entire day away (or she could just be in a drug induced sleep).

We got home yesterday afternoon and got our little hospital room set up in our bedroom being that she was sicker now coming out of the hospital than she was just the day before going into it. Mark's brother and his wife came over and we held prayerfully all evening long. By mid-evening, Rachel's breathing was much better. Although not normal, you can at least stand to watch her breath. Our prayers and spiritual experiences continue to happen and they only confirm what we believe: Rachel will be physically healed on earth.

Today, Rachel's heartrate is drastically lower. Her breathing is much more relaxed and she's no longer making noises while breathing. Although still needing oxygen, she's maintaining the oxygen at a much higher rate (even seeing 100% A LOT which never happened in the hospital). She's sleeping comfortably most of the time and has woken to go to the bathroom several times and even went out to the kitchen to eat some oatmeal earlier today (yes, the oxygen cart goes with). Although she does seem drugged, we've decided to let it be for today and let her sleep. Mom's still in her pajamas and trying to catch up on some much needed sleep, too!!!

We continue to believe and we continue to walk by faith and not by sight. We are truly being tested but we know that it is for our own gain. As I've stated before, the past several weeks have been some of the most spiritual that we have ever known. Some day I'll share all of the holy goosebump experiences that have been happening. And although the road continues to be long, they only confirm what we believe: That Rachel will be physically healed from cancer here on earth.

WE BELIEVE!!!!!!!

Specific Prayers:
~Thanksgiving for the physical healing that Rachel is receiving.
~That Satan lose any stronghold that he has on Rachel or any member of our family.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Wednesday, May 9, 2007 9:44 PM CDT

Rachel continues to have pain and the pain doctor continues to try and get it under control. She mainly complains about her belly with a complaint of pain in her side and back thrown in for good measure. We're not sure if it's all related or not. Is the nausea due to pain? Is the nausea due to something else? We just don't know. He says she's a difficult case. Uh, yeah. We knew that a long time ago! Everyday he changes one thing to see if it's working or not. He's got a "trick" up his sleeve that he's hoping we'll be able to implement tomorrow. We'll see. Hope it works for her.

Because he's "experimenting" with different drugs and amounts, we've found that she's been more tired the past two days and has been sleeping much more. Not something we're happy with. And even when she's awake, she's very tired.

"My" Tammy has newborn kittens and they got Rachel's interest today. So this evening we went and held kitties. The smiles were wonderful!

"Have faith in God," Jesus answered. "I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:22-24

We've asked for healing for Rachel, now we believe that she's received that healing and are giving thanks for it. WE BELIEVE!!!!

Specific Prayers:
~Give thanks for the miracle of a cure on earth that Rachel is receiving.
~That Rachel be pain free and then believe that she will be.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Monday, May 7, 2007 9:54 PM CDT

Every day something happens to confirm Rachel's miracle. It is such a wonderment to be a part of God's plan. We know that Satan is angry and we know that we still have a battle ahead of us. This is not going to be easy. But God will succeed! The things that have been happening can take your breath away. They can bring tears to your eyes. They certainly bring affirmation of God and a spiritual realm. We are praising God!

We continue to see changes in Rachel. She wanted to go shopping yesterday for new shoes. So, we went to the mall! We also ate at the food court and stopped at the arcade center and played some games. She did great! Today she wanted to go grocery shopping so that's what we did. It takes a lot out of her and she's very tired, but it's good to be out of the house.

She does have some new aches and pains and we're dealing with that the best way we can. There have been some medication changes today to try and deal with her nausea a bit better as that seems to be worsening and tomorrow will bring more discussion about other pain meds, too. We do not know what God has in store for her as far as how long she's going to have to have pain. We will do our best to keep that pain under control until it is resolved.

We ask that you continue to give thanks to God for the wondrous work he is doing in Rachel and thanksgiving for her healing. She has touched so many people's lives that it's no wonder there is such a battle going on. When I was told almost five years ago that "it's going to be a long road but she's going to be just fine", I certainly didn't even begin to imagine that the reason the road would be so long was so that one little girl could reach out to so many. As each year has clicked away, she has touched more and more and more people. Not too many of us can say that by the time we were seven we had touched tens of thousands of people all across the world. When I was pregnant with her someone at our church said, "God has great plans for that child." I smiled and shrugged and thought, "Yeah, whatever." If I had only known .... Good thing I didn't.

Once again, we ask that you continue in prayer. I was listening to a CD and they referenced a book about prayer and getting answers to prayer. I guess the book was written by a football coach and he used a lot of football analogies. He said that it's easy to run the ball on your side of the field. There isn't a lot of resistance. But, the closer you get to scoring a touchdown, that's when the enemy puts up their best defense. The biggest, meanest, ugliest spiritual warfare that you've ever seen is going to be put up to keep you from scoring that touchdown because what happens if you score? Victory. Miracle. Healing. You will praise God and tell the world about it ... exactly what the enemy doesn't want to have happen. He went on to say that millions and millions and millions of people have made it to the one yard line who have never scored. We can't lose heart in doing what is good and trusting and believing. We can't grow weary. We must walk by faith and not by sight. Our eyes will deceive us every time. But it is God's timing. He's going to do it, but in his timing.

We've been told that Rachel is going to be healed. God has confirmed that to many people and he has said that in his word and we're standing on it. There are many Bible versus that talk about physical healing. We're standing on those promises. And God will get the glory.

What a victory this is!! We believe!!!

Specific Prayers:
~Thank the Lord for giving Rachel the miracle of a cure on earth.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Sunday, May 6, 2007 11:24 AM CDT

Even though I had every intention of going up to the clinic on Friday and then being admitted to the hospital to try and switch pain meds around for Rachel, multiple things happened that day to keep us from going up there. I don't believe in coincidence. So, we didn't go and Rachel had her best day in a long time.

I walked into the bedroom and she was gone! I stood there looking at the bed wondering where in the world she was. She hasn't gotten out of bed on her own in weeks. I found her in the bathroom. She never called me, she just went on her own. Once, up, she stayed up. She was up from 1:30 in the afternoon until 10:00 that night!!! She was walking around on her own and it was just a much better day than we had had the day before. We are thanking God!!!

On Saturday, she was again up from about 12:30 until bedtime. Although she seemed to have a few more reports of pain, they certainly weren't the howling and crying scenarios that we've had in days past. We put her to bed early in hopes of her sleeping twelve hours and then getting up at an earlier time. Which is exactly what happened. She's been awake since around 8:30 and out of bed since about 9:30 this morning. She's also eating us out of house and home! Well, she's not eating a ton just eating constantly. Grazing. We're thrilled!!! Thank you, God!!

Even with the bumps in the road, we continue to believe in Rachel's healing here on earth. There have been too many "things" that have happened in the past two weeks for us to give up on that belief. Someday I may share those "things" with you ... not yet. We know right now that the battle is a spiritual one. We continue to learn of people who have accepted Christ because of Rachel's situation ... another one just last night. What a testimony she's going to have! Although to the medical people Rachel's road seems hopeless, we know that our God is above all of that. So, we continue to believe and to give thanks.

Specific Prayers:
~Thank God for the miracle he is performing in Rachel.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Friday, May 4, 2007 10:31 AM CDT

I made that phone call and we ended up having a CT scan done yesterday. Things certainly aren't better, as a matter of fact there has been growth. Yet there isn't anything that they can 100% tell us is causing her all of her nausea and vomiting. They chose to put her on a sedation drug called propofal. At low doses it's supposed to help with pain without sedating. The pain doctor had talked about doing that in the future if the need arose and I actually have a cassette of it in my refrigerator just in case he chose to go that route then we could quickly hook it up. Well, she got hooked up to it yesterday (they wanted to leave the morphine on, too). We stuck around the clinic for a while so they could see that she was handling it well and then sent us out the door. It still hadn't hit her nausea but I had my orders on how to turn it up during the night to try and get her comfortable. I was in the parking ramp and my cell phone rang. Guess the big-wig doctor of home care or something like that was having a fit that they were sending us home on a drug like that and we didn't have a DNR (do not resuscitate) signed. So, back into clinic we went and they disconnected the propofal with the promise that a different drug would be sent to our home yet that evening.

Yeah, at 10:30 last night the nurse shows up with another narcotic. Great. We switched it out. And although Rachel did have a better night than the last two, she may have slept just because her body finally gave up. She did wake up about every two hours though wanting medicine to relieve her terrible nausea. She sleeps with a bucket. How sad is that???

So now we're debating what to do. I was told yesterday that they do use propofal as a way to get kids off of narcotics who have been on them for a long period of time. Okay, but they probably aren't going to let us do that at home unless we sign some papers. We may end up in the hospital yet today to try and do some switching around with these drugs. As some people have mentioned in the guest book, there are complications to long-term narcotic use. Just because "most" people don't develop nausea and abdominal pain doesn't mean Rachel won't. Remember who we're talking about??? We think the only way to prove that it isn't the narcotics causing this is to get her off of them. There just is no easy answer. We actually don't really care if she's on narcotics as long as the nausea issue is handled. And that just hasn't been the case.

So, we wait, we pray, we see what direction we're supposed to take. We believe. It is not enough to hope. You must believe. We don't hope that there's a God. We believe that there is a God. Huge difference there. And so we believe that he's going to heal her, we don't hope he will. Hope isn't faith. Faith is believing.

We believe!!!

Specific Prayers:
~That Rachel's nausea and abdominal pain stop immediately.
~That Rachel be given the miracle of a cure on earth!!!

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, May 3, 2007 7:55 AM CDT

We did an x-ray yesterday. There is no blockage, there is no constipation, there is nothing pushing on anything. There is some gas. That's it. Pretty boring. So why the pain????

"Well, Jodi, that's just what happens." WHAT?!?!? There are no tumors in that area so how can that be "just what happens"?? We don't accept that answer. Of course, the nurse practitioner for the pain doctor (he's out of town) wants to just throw more narcotics at it. Drug her up! "Kids in this condition don't get taken off of drugs, they get put on more." Kids in this condition ... WHATEVER! If it weren't for this abdominal stuff she wouldn't have any pain. When I said no more narcotics the pain team nurse looked at me and said, "Do you like to see your daughter in pain?" Oh, well, of course I do. Matter of fact, that's number two on my list of favorite things. WHAT?!?!?!?! Give me a break. Needless to say, I was not happy.

Although we have some answers about what it's not, we still don't know what it is. Rachel's oncologist is also out of town right now but I'm going to call her nurse practitioner and have a long one-on-one conversation with her. The problem with being at the clinic sometimes can be that whenever they are "delivering difficult news" they have so many people in the room and there are so many varying opinions that it can be hard to be heard. Yesterday I just finally said, "Okay, let's go home." I think they got the hint that I was done. I don't want the pain team anywhere near us for a while. They just want to throw something at a symptom and not find out what the problem is. I bet they wouldn't treat her this way if they were "actively" treating her for her cancer. They just don't get that she IS being actively treated upon. The clinic opens in a half hour. I'm beginning to think that if they think it's tumor, or related to her cancer in any way shape or form, then they need to prove that to me. And if it is, then I guess we need the pain team. But if it's not ...

I'm ready to dial that phone!

WE BELIEVE!!!!

Specific Prayers:
~That Rachel's pain cease immediately.
~That we find out today why Rachel is having pain.
~That Rachel be given the miracle of a cure on earth!

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Wednesday, May 2, 2007 8:23 AM CDT

I'm going to take her in today. After a night of no sleep--even though she had three sedatives three hours apart, we think it's time for an x-ray, or something. I can hear her intestines gurgle from across the room and she's passing a lot of gas. It's obviously an intestinal issue, but exactly from what I'm beginning to waver on. At first I was pretty sure that it was constipation caused from all of the narcotics. I'm not saying that that isn't still what it is, but I'm beginning to question if there isn't more to it. Being that today is going to be day five of feeling terrible and hardly being out of bed, and even though two different nurses have seen her during those five days, it's time to be seen by a doctor. So I'm taking her in. I'm going to show up on their doorstep this morning.

Specific Prayers:
~That Rachel's intestinal pain cease immediately.
~That the reason for Rachel's intestinal pain be easily fixed.
~That Rachel be given the miracle of a cure on earth!!

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Monday, April 30, 2007 12:56 AM CDT

Up and down and up and down and then around and around. This weekend has been horrible. I left Saturday morning to run errands. YEAH!!! I GOT TO RUN ERRANDS!!!! I went here and here and there and there!!! It was SO exciting!!! No, it REALLY was!!! Do you know how long it's been since "I" got to go grocery shopping???? It was FUN!!! Okay, so I'm a freak. But, hey, I haven't been able to do a lot of those things that we all take for granted for about two months. I was just puttering in my car running here and there. It was such freedom! But ... reality came back to slap me in the face as I was in the checkout line at the grocery store. It all started with the ring of my cell phone.

"Where are you?" "Checking out at the grocery store." "Did you buy Sprite?" "I'll go get some. Why?" "Rachel's vomiting. And vomiting. And vomiting." "I'll be home in 20 minutes."

Yep, Rachel had been vomiting and did so one more time after I got home. She rested for about an hour and then sat and watched Blake play PS2. After about another hour the two of them went outside with Mark and planted some flowers. Rachel lasted about a half hour. She came in, looked very tired, and she wanted to sit on my lap. Within minutes she started howling. Her back hurt, her sides hurt, her tummy hurt, her abdomen hurt ... she just hurt. She cried, she screamed, she howled, she moaned. Constipation. She hasn't gone in over a week. Oh, boy. She let out blood curdling screams. This continued for hours. Her oncologist "just so happened" to call a couple of hours into this and called in a prescription for a suppository that would work within a half-hour. Mark took off to go get it. When he got back we "did" it to her. Her eyes were like saucers and she screamed bloody murder constant for 20 minutes. It also didn't do anything. Then we did an enema. Again ... nothing. She writhed and screamed and cried and moaned and asked us to make it stop for six and a half hours. That is longer than I was in birth for any of my kids. Heck, that's only two hours shorter than I was in for all three of my kids put together. We felt totally helpless. It was one of the worst evenings of my life. The Saturday before that being the worst, this had to be number two. It was horrific. I can't even begin to explain to you what was going on in this household. You'd have to have experienced it.

Finally, at midnight Mark and I are looking at each other, totally exhausted, totally feeling like failures, and not knowing what else to do for her when he looked at me and said, "You got any Atavan?" Ahhhhhh ... a sedative. I smiled. "I DO!!" I trotted off to the kitchen and came back with a BIG dose of it. Within about a half-hour she was sound asleep. Poor baby. We just ached for her.

Sunday morning brought with it one exhausted child. Between bouts of nausea, she slept and slept and slept and slept. The home care nurse showed up and suggested another prescription to the doctor which Mark promptly picked up. Rachel looked drugged so we turned the morphine down even more (as a matter of fact, I've now been arguing with the pain doctor to GET HER OFF of all of these drugs--more on that in a bit). Several hours after taking that prescription, Rachel started pooping. She pooped all afternoon and evening. We think it's finally out of her. But, she's still having horrible nausea and abdominal pain. And no one wants to hear that it may be because of the narcotic.

They have her on SIX different anti-nausea drugs and they still aren't cutting it. Yes, SIX!! We feel that the source of her discomfort is that the narcotic drugs have irritated her GI tract--a very common side effect of narcotics, yet they don't think so because it didn't happen right away. I guess no one has heard of cumulative effect. I had to get quite firm with the pain doctor about how we wanted her off of the narcotics because any pain that she's having now does not need to be handled with narcotics. He's having a hard time with that one. I'm having a hard time with a home health care system that doesn't seem to care what the parents think--or they don't think the parents know much. I've stood in my house and argued with nurses over my child's care. It has not been fun and it's about to not get very pretty either. The negativity that they bring into this house is absolutely horrific. We don't want them here. One woman had the audacity to start crying and tell me that death was imminent right in front of Rachel! Let me tell you, we're not happy. When you're trying to remain positive and keep positiveness in your house, that's the last thing one needs. Negativism just breeds uncontrollably.

Rachel's counts are definitely up again! Her white count is a whopping 15,500 with an ANC of 13,000!!!! Her hemoglobin has again gone up on it's own and is 10.3, and her platelets have once again jumped on their own and they are 84,000!! We are quite happy!!! Her electrolytes are also coming into line. Now to just get her off all of those drugs ...

I would like to thank all of you for your prayers, for your scripture versus, and for your testimonies. I've been laughing and crying at the journal entries and emails. I've been brought to my knees and humbled. I've seen fulfillment of my own prayers. It is quite the awesome experience to see God's work and how he actually works it. And we will keep effectually and fervently praying for Rachel's complete healing from cancer here on earth.

WE BELIEVE!!!!

Specific Prayers:
~That Rachel's abdominal pain cease immediately.
~That Rachel be able to be off all medications by Wednesday.
~That Rachel not have any other pain issues.
~That Rachel be given the miracle of a cure on earth.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Friday, April 27, 2007 8:14 PM CDT

Yesterday Rachel's platelet count and hemoglobin rose again! Because of this, we're not going to check her blood counts until Monday now! WOO HOO!!!!! We're so excited!! Rachel continues to astound us with her awake-fullness. She's only taken one short nap today. She really started walking around today, she spent some time outside sitting in a chair, and she even ended up playing trucks on the deck with Lance. She asked to be "unhooked" from her medicine. My heart danced! Only problem is that she's hooked up to morphine and I couldn't unhook her.

Speaking of morphine, last Friday (a week ago), Rachel was on 1000 milligrams of morphine a day (this is a TON). On Saturday they switched her over to the other drugs that ended up zonking her out. By the time they switched her back to morphine, the equal dosing from the narcotic she was on (which we had continued to lower and lower) was now only 168 milligrams per day!!! Yesterday we dropped that down to 120 milligrams and today down to 108 milligrams. The pain doctor is befuddled. He just doesn't understand how you go from those large amounts to what she's now on. He wants to keep her here and we say "Why?" His answer was, "Because she's not zonked and she's not reporting any pain." Uh, well .... do you think the pain can go away? Trust me, they don't think so. They think that EVERYTHING is due to tumor. If she has a tummy ache it can't be from the fact that she's on narcotics, it's because there's probably a tumor pushing on her tummy. If she has a headache, it couldn't be from the drugs, it's because of her tumor. If she's got pain, it's all because of tumor. So, she HAS to have pain. But she's not complaining ...

We'd like to see if she can get off of the narcotics. The pain doc isn't thrilled. Tough. Get her off of them. I'm going to talk to him tomorrow about going to oral drugs rather than her hooked up all of the time. She obviously doesn't want it. If it's hindering her, we want it OFF!!!

We now need her to eat. A LOT!!!! And good food. She's been asking for things like cupcakes, pizza, donuts, ice cream, cookies, etc. No, No, and NO!!!! Well, the pizza isn't exactly the worst thing, but the others are! Why can't she want apples and carrots??? She was not happy with me today when she took one bite of spaghetti and then asked for ice cream. Thank goodness there isn't any ice cream in the house. She needs an appetite. A BIG one!!!! She doesn't have a lot of energy. I know that she's been in bed for a long time but she also hasn't eaten well for a long time. That CAN make a big difference. Let's pray for Rachel's appetite to increase and that she craves healthy food!

We're hoping to have a quiet weekend with Rachel continuing to improve. But we must keep praying. My sister-in-law shared a newsletter (The World Challenge Pulpit Series) with me today that she received in the mail. Coincidently (yeah, right) that newsletter is about prayer. It talks about how it is by prayer that we go to God's throne of grace, where he is seated. And there, in his presence, we are to make our requests known to him. Paul urges us, "Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known to God" (Philippians 4:6). The all-knowing, all-powerful God of creation has given us his personal invitation to "come boldly to his throne." And once we're there, he invites us to ask of him, to make requests of him, to make our needs known before him.

"Let us therefore come boldly to the throne of grace, that we may obtain mercy, and find grace to help in time of need" (Hebrews 4:16). "In whom we have boldness and access with confidence by the faith of him" (Ephesians 3:12). These verses speak of coming to God boldly with our pressing needs, which pleases him.

There are times that we can simply and quietly worship God in prayer. Yet there are times when the conditions of our lives become so critical that another kind of praying is necessary. When situations overwhelm us we must come boldly to the Father. In such times, our needs will not be met by anemic, half-hearted prayer that gives up after a day or two. During these time, the true, unchanging Word of God exhorts us, "Come to the Father's throne, and do so boldly. The door is open to you. Come with confidence that he will keep his Word. When God tells us to come to his throne boldly, with confidence, it is not a suggestion. It's his preference, and it is to be heeded.

"The effectual fervent prayer of a righteous man availeth much" (James 5:16). The word "effectual" means "a fixed position". It suggests an unmovable, unshakeable mindset. Likewise, "fervency" speaks of a boldness built on solid evidence, absolute proof that supports your petition (request). Together, these two words--"effectual fervency"--mean coming into God's court fully convinced that you have a well-prepared case. It is beyond emotions, loudness, pumped-up enthusiasm. Such prayer can only come from a servant who searches God's Word and is fully persuaded that the Lord is bound to honor it. Indeed, it is important that none of us goes into God's presence without bringing his Word with us. The Lord wants us to bring his promises, remind him of them, bind him to them--and stand on them.

We have also been given help to approach God's throne of grace. The Bible says we are petitioners at his throne, and that Christ is there as our intercessor or advocate. By his shed blood on the Cross, Jesus has opened the door to the Father's throne for us. It is by him that we have access to personally bring our requests to God. We also have the Holy Ghost standing beside us in the Father's court as our advisor. He stands by us to remind us of the eternal decrees and divine constitution that make up God's Word. And so we have these incredible promises--of an advocate and an advisor, standing beside us--to give us boldness and assurance in coming to God's throne.

A precedent is a "preceding case" that serves as an example in subsequent cases. And "binding precedent" is a legal decision made in the past that becomes an authoritative rule for similar cases in the future. For judges, this means having to stand by a decision that has already been made. Good lawyers regularly rely on "binding precedent" for their cases, because they know a precedent will stand up in court. So they search their law books to find favorable cases from the past that can fortify their arguments in court. They also seek out the counsel of skilled legal advisors, who point out precedent decisions that pertain to their own case.

All through the Bible, we find holy men and women who seek out this kind of "binding precedent." They come into the Lord's presence to make a request, and they bind him to his Word. These bold saints don't just show up unprepared; they come carrying a "spiritual briefcase" loaded with precedents of how God answered his people's prayers in times past. They remind him of all the promises he made, and point out case after case of how he fulfilled his Word to those in similar need.

Take Moses in Exodus 32. God told Moses he was going to consume Israel for their brazen worship of the golden calf. Moses responded by immediately fasting, falling on his face and pleading his case. He would bind God to the promises he had made to Abraham, Isaac and Jacob. Moses stood on pledges that God had made years before--covenant promises, unbreakable pledges to bless, protect, and answer Israel's prayers "for you, your children, and your children's children." Moses reminded God of those promises and "The Lord repented of the evil which he thought to do his people" (Exodus 32:14). Moses had stood firmly on "binding precedent," and God honored it.

When Jehoshaphat ruled over Judah, he faced an invasion by a massive army. So Jehoshaphat "set himself to seek the Lord, and proclaimed a fast throughout all Judah" (2 Chronicles 20:3). The people prayed, fasted, interceded and repented. The king remembered God's "precedent mercies," and he brought them up before the Lord. Of course, God answered Jehoshaphat, and Judah's enemy was defeated. God was bound to his own Word.

David regularly came before God's throne with petitions, binding the Lord to his Word with precedent cases of mercy he had shown. "God, we have heard with our ears, our fathers told us, what work you did in their days, in times of old, how you drove out the heathen, and planted them" (Psalm 44:1-2). David reasoned, "That past deliverance wasn't achieved by Israel's strength. You brought it to pass, Lord, by the power of your hand. It was accomplished by your Word, because you favored your people." The record showed clearly what God had done for his people in similar cases, in their times of dire need. So David made his petition with confidence, based on his knowledge of these past mercies. He boldly said, "Lord, here is how you ruled back then. Now, I'm asking you to command your deliverance for us again. Do it for us today, God! It's time for your people to have victory over their enemies." Psalm 74 sums up each of these examples, instructing us today: "Honor your covenant... Arise and plead your own cause... Forget not your word" (Psalm 74:20-23).

Reading the example in Nehemiah 9 is one of the clearest example of bringing "precedents of mercy" to God's throne. Israel has gathered to fast, pray and confess their sins. (Notice how often these begin with fasting??) The Levites led the people in prayer and they pled their precedent case (see Nehemiah 9). When they finished this lengthy list of "precedent actions" by God, they prayed boldly: "now therefore, our God, the great, the mighty...who keeps covenant and mercy, do not let our trouble seem little before you, for you are our gracious and merciful God" (Nehemiah 9:31, 32). The Levites bound God to his Word. They were confident in asking him for mercy, because they had a historical knowledge of his forgiving, tender mercies: "Many times you delivered them according to your mercies" (Nehemiah 9:28).

Lay hold of this truth: GOD CHANGES NOT.

Bind God to his Word. Write down every remembrance you have of what he has done for you in past years. Then go to Scripture and find other instances of his "binding precedents" with his people. Bring these lists before the Lord and remind him: "God, you cannot deny your own Word. You are the same yesterday, today and forever." Often we rush into God's presence making our requests passionately and zealously. But we wilt in our time of prayer, because we don't come to his throne prepared. We must have a fixed position when we come to God. True boldness doesn't begin with emotions; it begins when we are fully persuaded. And so we must build a case beforehand not just to present to God, but to fortify our own faith.

Today we have something that the Old Testament saints could only dream of. And that is God's own Son seated at the right hand of our Father-Judge. We know the Son, because he is our blood-covenant brother, by adoption. And we are able to claim our blood-tie to him whenever we stand before the Judge and bind him to his own arguments:

"Father, we have nothing to bring to you but your own Word. You decreed from the foundation of the world that your Son, Jesus, would die. And you promised that by his blood we would be cleansed, and by his stripes we would be healed. You also promised that we would be complete in Christ. You said you would keep us from falling, and that Jesus would be our intercessor. You promised that by faith in him, we would be fully accepted and adopted by you. Then you promised you would open your ears to our petitions. You promised to supply all our needs. And you told us to believe your prophets, who recorded in the Scriptures your promises to be merciful to us, always ready to forgive us. You promised you wouldn't allow us to carry any load that we couldn't bear. And you told us, 'All things work together for good to them that love me and are called by me.' Father, these are all your decrees. They are your very own promises. And you cannot deny your own words. You are the God of Abraham, Isaac, Jacob and you are also my God. Oh, Lord, have mercy and grace on Rachel now, in her hour of need. Amen!"

Pray boldly and with binding precedence. If you would please share with me scripture of binding precedence of healing, I would greatly appreciate it. Either share it in the guestbook or email it. Remember, when situations overwhelm us we must come boldly to the Father. In such times, our needs will not be met by anemic, half-hearted prayer that gives up after a day or two. During these times, the true, unchanging Word of God exhorts us, "Come to the Father's throne, and do so boldly. The door is open to you. Come with confidence that he will keep his Word. When God tells us to come to his throne boldly, with confidence, it is not a suggestion. It's his preference, and it is to be heeded. Please pray for Rachel. Please REALLY pray for Rachel. Just because things are better than they were last weekend certainly doesn't mean that we should stop praying. Although we believe that Rachel will be healed, she is not there yet. The prayers and belief must continue. They must. Please join with us in prayer and belief!!

We Believe!

Specific Prayers:
~Thank God for the reduction in pain and pain meds.
~That Rachel's pain completely cease.
~That Rachel be able to get off of all pain meds.
~That Rachel's appetite increase rapidly and that she crave healthy food.
~That Rachel's hemoglobin and platelet counts continue to climb.
~That Rachel be given the miracle of a cure on earth!!

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, April 26, 2007 0:41 AM CDT

Today was Rachel's best day yet since this weekend. She was awake more, she asked for a cupcake and pizza, and actually drew pictures! Okay, so she only ate one bite of the cupcake and about 5 bites of pizza, it sure is more than she's taken in for the last four days combined!! She actually is sitting up on her own in bed and at the kitchen table. OOOOHHHH!! And she sat on the floor to play with her race car set that Lance got her for her birthday for about 10 minutes!! She sat in bed for 45 minutes and painted (only works on certain paper--don't have a heart attack!).

We did switch back to the morphine today and no longer do we have pupils that are pencil dots. She's much more alert! But, she's crabby. Because of all of the nausea, they did want her to start on a steroid (thanks, Doc). Hopefully her nausea will decrease and we can stop that, too.

Couple of notable things for the day. For the first time in like four months, Rachel's platelets came UP on their own!!!! WOO HOO!!!! Not only that, but so did her hemoglobin, her sodium and her potassium (these two electrolytes have been problems for her along with phosphorus). But her PLATELETS!!!! We are SO ecstatic!! The other thing, which isn't so cool is that on Friday night during her "pain crises", we found that she was holding her right breast. Today I gave her a bath and I feel that she's had tumor growth there.

The pain seems to have diminished though, as she's not on as much pain medication as she was on on Friday. I think we'll try lowering it again tomorrow. It's a day-by-day, hour-by-hour ordeal right now. We must keep praying and keep believing!!! It's the best medicine we've got.

Specific Prayers:
~Thank the Lord for the increase in platelets.
~That Rachel be given the miracle of a cure on earth!!

WE BELIEVE RACHEL WILL RECEIVE AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!

Tuesday, April 24, 2007 11:11 PM CDT

Although better, we aren't there yet. Rachel continues to be overly drowsy and now her tummy is extremely upset. She wanted her bucket very close today whenever she was awake--which wasn't much. But, when she was, she was able to talk without slurring, she was able to sit on the toilet by herself, she was able to stand for small amounts of time (like enough time to pull up her pull-up), and we actually saw a few smiles. The best I saw her was about 9:00 this evening when she actually got herself up to a sitting position in bed all without any help and then actually sat there with out any support for about a half hour. We had huge smiles, she talked, she interacted ... it was WONDERFUL!! But after that half-hour she was ready to sleep. She laid down and promptly went back to sleep.

The pain doctor actually came to our house this evening so that he could evaluate her. Her doses of narcotic are actually quite low and she's not having pain. He's kinda confused by that. Also, her dose is low but she's still so zonked. We're going to switch drugs in the morning (you don't make changes at night because you want to sleep!) back to the morphine that she was on and see what's happening. On Friday she was awake but in pain, but she was on a ton more drug in comparison to the drug she's on now. If we change her over and she's in pain, we've got the one that she's on now to quickly switch back to. Rachel is baffling the pain doctor. We say, "Welcome to Rachel's world." We're really hoping to see our daughter tomorrow.

Life right now consists solely of dealing with a child who is sleeping almost all of the time. I think she was "up" for about two hours today. That's it. The rest of the time she was sleeping. That's just so not right. And it's not exactly good sleep all of the time. She knows what's going on around her but she can't keep her eyes open. It's very sad. And her tummy hurts. We've added a new drug for that, too. Hopefully tomorrow will be a better day all around.

Specific Prayers:
~That Rachel not be overdosed on drugs.
~That Rachel's pain cease immediately.
~That Rachel be given the miracle of cure on earth!

WE BELIEVE RACHEL WILL RECEIVE A MIRACLE FROM HEAVEN IN 2007!!!!

Monday, April 23, 2007 11:28 PM CDT

What I am about to write pains me like you can't imagine. Oh, NO, Rachel is still very much with us!!! :-) Something has come to light today that horrifies us, justifies us, and is making us very angry.

On Saturday, we went to the hospital and left with Rachel being on two IV drip medications for pain. One is a narcotic and the other is similar to valium. Rachel was in horrific amounts of pain earlier in the day and hadn't slept all night. After her birthday party she went to bed and by that evening her breathing was very shallow and she was having periods where she wasn't breathing at all. Mark and I were horrified with how fast she had turned and we, and everyone who was gathered, were pretty much thinking that she was in quite a perilous position and was very possibly going to die.

Sunday morning both Mark and I felt that Rachel was having too much of the drugs and we asked that they be turned down. We asked again on Sunday afternoon because Rachel continued to be pretty much comatose. This morning I asked that the valium-like drug be discontinued because I just didn't like what I was seeing and felt that I wanted to see what she would be like without that drug. As I was on the phone with the pain doctor, the home health care nurse was working with the pump. All of a sudden she said, "I need to talk to the doctor right now. We have a problem." I handed the phone to her and she proceeded to tell him that the pump had been programmed incorrectly and that Rachel was receiving 2.5 times the amount of the medication than she should have been getting. Rachel WAS in the fight for her life Saturday night .... just not from the cancer. One of the "side effects" of too much of this drug is: respiratory failure (in other words, you stop breathing and die). Rachel was definitely there. She could've easily died that night and we all would've assumed that it was her cancer that had exponentially just taken off and that she died from that when really it would've been an over-dose of the drugs.

Needless to say, everyone from us all the way to the medical people are horrified. Human error just about killed our child. God was working overtime that night. It's not only a spiritual war going on for Rachel, but He's having to battle human error, too!! There were breakdowns in the system on many levels because the error wasn't found for two days and there's been plenty of nurses parading through our door in that time. I guess there's going to be a conference at the hospital tomorrow about this. Boy, I'd love to be a fly on the wall during that one!! They are taking this very seriously. So, Rachel is completely off that drug and guess who opened her eyes today and talked to us without slurring? Guess who's eyes are no longer pinpoints?? Guess who's been sitting up in bed playing with toys? Guess who wanted to open presents?? I'm very sorry to say that because of being overdosed, Rachel doesn't remember anything of this weekend at all. She doesn't remember any of her parties or opening any of her gifts. So, while she was napping my cousin, Pam (who came and helped me today), rewrapped every single one of Rachel's presents that she had received and this evening Rachel sat in the recliner BY HERSELF and opened up EVERY SINGLE gift that she had gotten!! Although she is still very weak, she's not a wet noodle. Although she's still very tired, she's not comatose. Hopefully we'll continue to see improvement. I want the girl back that we had Friday ... without all of the pain, though.

We're hoping that she'll try to eat tomorrow and get out of bed even longer. Baby steps, baby steps but we'll do it. It was VERY scary. We truthfully thought she was going to die that night. We really did. I started planning her funeral in my head that night ... I really hate when that happens!!! It was an AWFUL night. It was an AWFUL experience. And the worst part is that it could've been avoided.

But, she's here. And we're believing!!!! See, it WASN'T her time!!!! We are believing that God WILL give her a miracle. As a matter of fact, thanks to "THE Tutor", Ms. Cummings, and Mrs. Glomstad, the Guidance Counselor, our front door is now plastered with 2x6 laminated cards that say "I Believe" on them and decorated by kids and adults alike. They're beautiful!!! It's screaming to the world that we believe God is going to heal Rachel. And Rachel believes it, too.

One other thing that I want to tell you about is something that Rachel said to us once she was able to talk. I asked her if she had had any dreams. She said, "Yes. I was fighting three monsters." I told the pain doctor that and he was completely surprised because he said that she shouldn't have been able to dream while on that drug and that if she did dream she surely shouldn't have been able to remember it. Maybe it wasn't a dream ... We certainly don't know all there is to the dieing process and if there's a spiritual warfare that happens at some point. I will not doubt anything.

But, as of today, Rachel is breathing, she's been the most alert that she's been in a couple of days, and we feel we're recovering from this pothole in the road. It sure wasn't fun. Matter of fact is was down right one of the most horrific times of our lives. We were watching our baby die right in front of us. But, she didn't. God is good!

WE BELIEVE!!!

Specific Prayers:
~That Rachel's pain cease so that she may be able to get off of the narcotic drug.
~That Rachel receive the miracle of a cure on earth!!!

WE BELIEVE THAT RACHEL WILL RECEIVE A MIRACLE FROM HEAVEN IN 2007!!!!

Sunday, April 22, 2007 5:15 PM CDT

Yes, yesterday was not a good day. We were quite frightened by the events that took place and it hit Mark and I quite hard with the realization that Rachel is going to die. She had such incredible pain and screamed and screamed and screamed. I had no sleep that evening (Rachel and Mark didn't get much either) and the entire family went to the hospital very early yesterday morning. Rachel finally slept at the hospital (didn't even have new pain meds started yet) but all too soon it was time to leave to go to her birthday party. As far as her party is concerned, in two words, it sucked. She was in pain, and wasn't able to interact with her friends at all. She did open her gifts and she did sit at the table and have a couple of bites of cake, but otherwise she was in Mark's or my lap. Mark and I felt horrid yet that's where she wanted to be. How do you deprive her of that???? I really don't know what her little friends thought (or their parents), but again, she so desperately wanted to be there. And so she was.

After the birthday party she went to bed. As the night wore on, Rachel's breathing became more and more shallow with periods of no breath at all. We really didn't think she was going to make it through the night. Family and friends gathered and we prayed over her, we anointed her, we were with her, and we prayed some more. She made it through the night and today her breathing is deeper, more even, and not as rapid. We've actually turned down the pain meds because we feel she's overdosed on them. Hopefully we'll be able to find that fine line between pain coverage and loopiness. She's drinking, she's communicating more, and we're seeing her fiestiness.

Some things were brought to light to us late last night. Jesus healed the sick. He made the lame to walk. He made the blind to see. He even brought Lazerus back from the dead. We know that God can perform miracles. There is absolutely no doubt about it. Miracles happen everyday. They really do. So, just because Rachel seems to be in a dire place, does that mean that we should stop believing that she's going to get a miracle??? NO!!!!!!!! We MUST believe it! It's not enough to KNOW that God can do it, we must all BELIEVE that He WILL do it!! Envision her alive, happy, healthy. Envision her riding her bike with her hair flowing behind her, in her swimsuit jumping through the lawn sprinkler, in her prom dress walking down the stairs to meet her date, driving away in her car, walking down the aisle at her wedding. POSITIVE thoughts provide positive energy. Belief in what God will do.

There are too many of us who believe that we have been told by God that although Rachel's road wasn't going to be a picnic, that in the end she would be healed. We have to hold to that now. Now is when faith is tested. Mark and I feel better today because we are believing God is going to heal her and not letting Satan take us into that dire spiral. Delusional? Faithful? We feel better. And that peace comes from God. Is that delusional? We are expecting a healing here on earth. That can only come from God. Please join us in believing. Let God know that you BELIEVE that He will heal her. Again ... with faith as small as a mustard seed, we can move mountains. We BELIEVE!!!

Specific Prayers:
~That Rachel be given the miracle of a cure on earth!!!

WE BELIEVE RACHEL WILL BE GIVEN A MIRACLE FROM HEAVEN IN 2007!!!!

Sunday, April 22, 2007 1:15 AM CDT

Hello, Jahna here (the friend, for those of you who don't know me.) I haven't had many opportunities to fill in for Jodi (ok, just 2 over the past 5 years) because I know she likes to update everyone herself, and she can definitely speak more eloquently on Rachel's behalf. I've been pondering on my drive home what I can write and let you know what the past day and evening have been. Obviously if I'm writing, then the news can't be all that great.

Rachel definitely is deteriorating, and faster than any of us could have imagined. Jodi and Rachel spent Friday night in the hospital to get her pain under control. She was not able to sleep at all because of the pain. Today (Saturday) Rachel went straight to her birthday party from the hospital on 2 different pain medications. This evening, several family members and close friends gathered at the house to pray for Rachel and tell her that we love her, and to support Jodi and Mark with whatever lay ahead. Rachel was sleeping, but very shallow breaths. Rachel's doctor arranged for the hospice nurse to come out and talk to Jodi and Mark and talk about the what if's. Later in the evening, Rachel did come around and was able to say a few words to those in the room. I am happy to report that by the time we all left, it seemed that Rachel was resting more comfortably and not gasping for breath as she was earlier. I'm hoping that the Hansen family can truly rest easier and all get some much needed sleep.

As Mark's brother put it, we are now in a spiritual battle. The earthly battle of what to do has been done and we now await the miracle of God's healing.

Specific prayers
- That Jodi and Mark get the rest they need to continue to care for their family
- That Rachel continue to rally and improve
- That Rachel receives her heavenly cure on earth

Thursday, April 19, 2007 10:14 PM CDT

Rachel continues to astound us. This morning as I was cleaning up the kitchen she was talking about what food she wants for her birthday party with the grandparents on Sunday. Of course, she wants pizza. What else? It's her favorite food. Cheese pizza. I mentioned that they were having pizza for lunch at school today. "I wanna go to school," was her response. I stopped, I looked at her, and I said, "What?" "I wanna go to school." "Today?" "Uh-huh. I wanna eat lunch there." Hmmmmm .... okay. So, she went to school today for about 1 1/2 hours. Not long, but she was there! She got about 40 minutes of schooling and 40 minutes of socializing. She even got her desk cleaned during part of that socializing. Gee, I'm sure that surprises the nurses at the hospital. Rachel is known for being meticulous. Drives us nuts.

Rachel's pain seems to be increasing and the amount of morphine was increased today. She had a better day than yesterday. Tomorrow is her birthday and she is going to go to school for a little while and have cupcakes, then come home and take a nap and then her "godsister" is taking her (with Mommy) to the Mall of America to the Build-A-Bear Workshop. She's VERY excited. Saturday is her birthday party with her friends and Sunday it's with the grandparents. She is SO excited. Oh, and Monday Grandma Red (Mark's mom) will take her out to eat and go shopping for a present. We're limiting everything to one thing per day. If everything is about two hours long per day, she'll be able to manage it. But no more than that.

I'm frantically researching because time is not on our side. I may just have to take help with the research as actually several people have suggested, plus the entry in the guestbook. I'll let you know.

Speaking of the guestbook, I am going to repost my cousin's guestbook entry here in the journal. I couldn't have said it better myself. I also didn't ask for her permission ... she'll still love me!!! :-)

I am still here and I'm still praying for Rachel's miracle.

To all of the others that read Rachel's Road,...

1) Please keep Rachel's big brothers, Blake and Lance, in your prayers as well. They are wonderful boys that absolutely love and adore their little sister. They are living this life as well.

2) I am begging everyone out there to pray...and pray hard. I know there are so many of you that visit this website daily. Some of you know her personally, some of us are related to her, others know her through other people, and some have stumbled across this website. I believe that despite why you check in on Rachel, you care. Now for the tough part...please care enough to pray. Please pray RIGHT NOW! Please pray every time you visit this website. Please pray, pray, pray. Please be an active reader, not one that just stops by to read the entries. Rachel needs ALL of us right now to pray, even those of you that don't know her and even those of you that read and never sign the guest book. PRAY, PRAY, PRAY!

Jolene Smith
Sioux Falls, SD - Thursday, April 19, 2007 12:57 AM CDT

Specific Prayers:
~That Rachel be given the miracle of a cure on earth!!

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, April 18, 2007 1:45 PM CDT

Things aren't getting any easier. With some new diarrhea medication we have gotten that to stop (hasn't pooped since yesterday morning at 4:30 am) and with that there isn't as much cramping so she's not in as much pain. She does have other pain that they feel is related to tumor so the pain doctor has upped her morphine.

They decided to do another CT scan yesterday to see if there were issues with her gallbladder, intestines, etc. because so far all of the tests for rotavirus, c-diff, etc. have all come back negative. What they found is very disheartening. First of all, they found nothing as to why she has this terrible diarrhea. There is not one piece of solid stool anywhere in her intestines ... just a lot of water. They are figuring it has to do with medications. Lovely. On top of that, we found that Rachel's cancer has grown quite a bit in the last three weeks since her last scan. They are expecting her to continue in pain as the cancer continues to grow until she finally dies of it.

Her oncologist and I have been scouring all of the studies that are out there (St. Jude's, COG, NCI, etc.) and there is not one study that Rachel qualifies for because of her platelet issue. Her oncologist has talked to people at all of those locations and more and they can come up with nothing for her. "Your miracle isn't going to come from me," her doctor said yesterday. We never thought it would. Doctors don't dole out miracles ... God does.

Rachel's platelet issue is due to all of the treatment that has had. Her body is tired. Her bone marrow, where our white cells, platelets, etc. are made, is tired. The chemo has wiped it out. Her doctor said that that's what happens to kids who have a lot of treatment. We can't continue to transfuse platelets without their being a downside to that, either. What ends up happening is that the transfusions stop working. We've begun to see the beginnings of that already, too. Rachel just doesn't get as big of a bump from her transfusions as she used to and they don't last. If we continue to have to do this (by giving her more chemo), there will come a point where we won't be able to bring her platelets back up. Her doctor is afraid that if she gives her any amount of chemo that she will do more harm to her than good. "I'll kill her," was her statement.

She told me that now we needed to look exclusively at alternative medicines and is looking into a couple of things for us that we've asked her to. She said that she would help us in any way that she could. Before when we've done alternative therapies, there was always the chemo net to fall back on. Now that's gone. But alternative is what we will do. It's actually called CAM--complimentary and alternative medicine. So, the research continues to try and find things that can work ... fast. Of course, God could just touch her ... Today would be a good day for that.

As always, we are nearing another birthday in the family. We hate birthdays here because it almost always bring bad news. Rachel's birthday is Friday. She will be seven. Seven. She WILL be seven!!! And they didn't think she'd be three. Then they didn't think she'd be five. They didn't think she'd start kindergarten. She's going to be seven and she's in the first grade staring second grade in the face. That's our Miracle Girl! :-) Now we really need the ultimate miracle of a cure on earth. Dear Lord, show us where you want us to go and where you want us to be.

So, with a heavy heart we ask you to continue storming the heavens for Rachel's cure.

Specific Prayers:
~That Rachel's tumors shrink.
~That Rachel's pain cease.
~Discernment for Mark & Jodi on treatment options.
~That Rachel be given the miracle of a cure on earth!

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Monday, April 16, 2007 9:59 AM CDT

Things have digressed over the weekend. Rachel now has watery diarrhea with cramping, nausea, and occasional vomiting and this morning her temperature went up to 101.5 while the nurse was here. The nurse is worried about dehydration and thinks she may have the roto-virus. We need to have a stool sample to confirm that one. Shouldn't be too hard to get. Bleh.

Rachel sits on the toilet and just screams in pain due to what we hope is cramping. She just says (no, she screams) that her sides hurt. At first we wondered if the side pain was tumor growing, but now it seems to be correlated to the toilet. At least we pray it is. I've heard it gurgling away in there so we're going with that theory for now. :-) It doesn't hurt as bad when she's laying in bed. She will have bouts where she's in the bathroom constantly for a couple of hours and then she'll go to sleep and have nothing while she's sleeping. She went without having to go to the bathroom from a little after 11:00 last night until 6:30 this morning. Then she was in and out of the bathroom for about an hour before she went back to sleep. She looks horrible.

She's also not eating. Her tummy is upset so who wants to? But SHE needs to! It's also tough to get oral meds into her when she's so miserable with tummy issues. We'll see if all that changes today or what's going to happen. If it is the roto-virus, there's nothing that can be done for it except treat the symptoms. Oh, yeah.

It's supposed to be 71 degrees here today. Was really hoping that she'd be able to get out and enjoy it. She was out yesterday for a while. Even went for a bike ride with Mark (we have one of those bikes that attaches to the back of an adults). Mark told her that she didn't have to pedal if she didn't want to. He said that she did once in while, but mostly just enjoyed being on the bike. She also sat on the deck with us and just enjoyed the sunshine. Weren't we just talking snow a few weeks ago??? Tee hee!! Welcome to Minnesota! Heck, it actually snowed last week!

The research continues and we've let Rachel's doctor know that we aren't interested in the "taking her home and letting her die" treatment. Not today. Now, as we all know, things in the cancer world can change mighty quickly. What you hold true today may not be true tomorrow. We are not being delusional about where Rachel is. She's in a pretty bad spot, but we have no doubt of God's power. We believe He will heal her. We have to believe that. We all do. There's power in belief. There's positive vibes in that belief. With faith as small as a mustard seed ...

Specific Prayers:
~That Rachel's pain cease.
~That Rachel's diarrhea cease.
~That Rachel's temperature be normal.
~For discernment on treatments for Mark & Jodi.
~That Rachel be given the miracle of a cure on earth.

WE BELIEVE IN AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Saturday, April 14, 2007 11:12 PM CDT

(The address for the benefit fund is now listed directly above for those of you who have asked.)

It was a night filled with making memories!!! What an incredible experience! To have so many of our family and friends there was just overwhelming. To have the kids' school there, too, because of JFK night was fantastic. Rachel did AWESOME!!!! And ... you can all watch it by going to www.wcco.com and checking out the top stories. When we looked this evening, it was right there on the homepage. They even interviewed Rachel's great-grandma. The segment already aired at 10:00 this evening. If they archive it to another section I'll try and let you know. If anyone sees that happen, please post it in the Guest Book (Thank You!).

The three kids also got to change the bases after fifth inning. It was such a wonderful family experience to be able to do. The memories are absolutely priceless. Thank you from the bottom of our hearts to Ms. Cummings (teacher extraordinare--oh, that's right, she's "JUST" the tutor) for making this happen for us. A huge thank you to the Twins' for all they did for Rachel and our entire family. Also a huge thank you to WCCO for their continued coverage of our Miracle Girl. Last, but certainly not least, thank you to all of our friends and family who gave up their evening (even if an evening of baseball wasn't exactly their favorite thing to do) and came to be a part of the experience with us. I felt like a chicken running around with her head cut off (actually, like I was hosting a party--you know, never getting to sit down--go, go, go) but I knew you were all there.

Rachel continued to have diarrhea while we were there and we spent A LOT of time in the bathroom. Thank God for Pull-Ups!!!! Her pain seems to have increased and in spots that are making our eyebrows raise. Things may start to get a little heated this week with the decision making if this continues.

It was a wonderful evening ... one that will live in our minds and hearts forever. This was truly an American baseball game--where all you're dreams come true! Now if we could've just found some angels in the outfield!!

Specific Prayers:
~That Rachel's pain cease.
~For discernment for Mark and Jodi.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Friday, April 13, 2007 11:25 PM CDT

I want to start out by giving a resounding THANK YOU to all of you who have written in the journal, emailed us, or called us, and of course prayed for us. You have no idea what support that gives us!! It's so uplifting to know that so many people are behind us during this difficult time. Right now we're hearing, "Wait. Trust me." So, we're not rushing anything. I've been researching but not with abandon. I've also been too busy (read: not home) to even do much with the research. We continue to have daily blood counts done and have been to the hospital both Thursday and Friday.

On Friday, Rachel got platelets. On Thursday, Rachel was overdosed on her narcotics so instead of going to PT, we saw the pain doctor. It was not an issue of safety, as the doctor explained to me already last week. If you have a pain level of 10, and you give pain drugs to equal that 10, then when you start to get better and your pain drops to an 8 but your pain meds are still at a 10, you are now overdosed and will act overdosed because your body now doesn't need that extra for the pain. So, that's what was happening. Rachel just wanted to sleep. Constantly. She slept 16 hours at night before I yanked her out of bed. She sat on the toilet in a total other world. She was totally zoned out. On the way to the hospital she feel asleep. While at the doctor's office she woke up for a bit, just to crawl into my lap and fight sleep not long afterwards. Yeah, too many drugs. We have backed off a bit on the methadone and she's doing fine once again.

She's very excited about throwing out the first pitch at the Twins game on Saturday!! She was even practicing today. She did manage school on both Wednesday and Friday. It's good to have her back although I've been at school both days, too. She's still having diarrhea so I need to be there to help with the bathroom issues. I'm hoping we get a handle on that over the next few days so that I don't have to be there. Even if it's just for two to three hours, it's two to three hours that I could be doing something else!!! Hmmmmm ... like research or cleaning my house or doing laundry! I hear one is supposed to do those things once in a while.

I got a phone call today from a TV reporter. The same one who interviewed us for Rachel's last "spot" on television. They want to do a "blurb" about Rachel now. So, they are coming to the Twins game and want to tape her throwing out the first pitch and do some interviews and such with family members and friends. So, as a reiteration to those coming to the Twins game, we're meeting outside the Dome at Gate G at 4:30. They want to do some filming outside the dome of our group and possibly do a few interviews and then they want to tape us walking into the dome and will probably continue some interviews once we're in our seats BEFORE the first pitch. I do not know if they will be in the stands with us once the game starts. We have like 80 - 90 family and friends coming and the kids' school has 900+ people coming because it's JFK night (JFK is the name of the school)!!!! We are SO excited! It's going to be SO much fun!!!! And all three kids get to change bases between the sixth and seventh inning! It's going to be a great night for our family. Our kids are just pumped!

So, during this bleak time we can always find a silver lining. Rachel is doing well at this time and will do great tomorrow. Next week will bring it's own "stuff" and we'll deal with it then. For now, we're just going to appreciate the glow that's happening. Our guts are telling us that the fight isn't over, but we're also hearing to wait and to trust. So, that's what we'll do.

A word about St. Jude's. Yes, it is a wonderful place and we've heard good things about it. You must be able to qualify for a study, as it is a research hospital, to be able to be a patient there. In the past that hasn't been the case for Rachel or the studies that were happening weren't something we were interested in putting her through. There are a couple of studies that we are probably going to look into, but we don't know if she'll qualify for them. Thank you to all of you who have shared ideas with us.

Specific Prayers:
~That Rachel feel well for the Twins game.
~For discernment for Mark and Jodi.
~That Rachel get the miracle of an earthly cure.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!

Wednesday, April 11, 2007 8:49 AM CDT

What a difference a day can make. Heck, what a difference 30 minutes can make. We went to clinic yesterday and I fully expected to be talking about different chemotherapies or reduced amounts or something along those lines, but I wasn't prepared for leaving the hospital with a migraine headache, an upset stomache, and the dry heaves.

I got sat down and got told "the talk" yesterday. I wasn't expecting it, I wasn't prepared for it, and I didn't like it. It's one of the days that we prayed would never come. I got told that "it's time to stop treatment and let her die".

How's that for a punch in the gut? How's that for pulling the rug right from underneath you? How's that for turning on the waterworks?

Yes, Rachel's primary oncologist feels that Rachel's counts are taking too big of a hit from chemo and that she just can't recover fast enough for chemo to do her any good. And she feels that if she reduces the amount of chemo she gives her that it won't hit the cancer. "Let's face facts," she said, "over the past two years we were able to keep the cancer at bay for six months at a time but now I can't even get a second round of chemo in." She's concerned about Rachel's platelets and how we've had to be in everyday for transfusions and says, "That's no life." She also said, "I can give her more chemo and then you can spend a month in the hospital again. That's also no life." Well, maybe not to her but if we're getting rid of the cancer--even if ever so slowly--we'll do it.

So, she thinks we should stop treatment, we should enjoy her while we have her, and let her die. As one of my dear friends said, "It sounds like Mayo all over again."

And so we're expected to make some horrible decisions. Her doctor said that there is no right or wrong answer. She said we could choose to go down fighting and that there's nothing wrong with that but then does Rachel enjoy life? I looked at her and said, "So, what's the difference between Rachel being in excruciating pain from the tumor pushing on organs until she dies, or giving chemo and dieing from a bacterial infection?" She said that she can't make decisions for us nor could she even say what she would do if she were in our situation with her own child. She said that all she could do was tell me what she's seen from standing on the outside. She said that those families who quietly accept that their child is going to die from the cancer go on and do things that they haven't been able to do during treatment (ie. take trips, etc.). They make memories with that child and enjoy each day, each hour that they have with them. The child is included in decisions about their death and that the entire extended family and community is able to help and knows how to help (oh, really????). When you continue to fight you don't get to make those memories and the child isn't part of the decisions. She also didn't think that we should tell Rachel about the decision at hand and that we should just make the decision and tell her about it once it was made. (Uh, we included her when she was FOUR, how do we not include her now?)

Mark's comment to all of this when we were together and I reiterated it for him was, "Blah, blah, blah." Mine was, "Oh, really?" You can hear the sarcasm, right?

We're hurt, we're angry, we're disgruntled, we're confused, we feel hung out to dry. Rachel found me needing a bucket on the drive home a little unusual. She found my dry heaves worrisome. Of course, she had no clue what was up. She wasn't in the room when the conversation was happening.

So, what now? We don't know. We don't know what we're going to do. Her doctor said it was time to stop the research. That gets a resounding, "I don't think so" from me. It's all I have right now. I will research until I find that there's nothing else out there. Every stone will continue to be overturned until there's no more to turn over. That's the only way I could live with myself. I can't take what she says at face value and just wither away and watch my child die. I have no idea if we'll do more treatment or not. I have no idea what I'll find in my research. I don't know if anything will even work or if she'll even qualify as a candidate for many things. But we won't know unless we try. Giving up isn't in the vocabulary yet. Not yet. Next week could be different, but not today.

With that being said, Rachel is going to try school today for a while. I don't care if she can only go for an hour. I'm hoping that over the next week she can work her way up to being at school for three hours but we'll take what we can get in the beginning.

So, this weekend takes on new flavor. People have asked if she'll be able to make the Twins game if we start chemo. Guess there's no worry for that right now, huh? I know that if we do find a treatment plan to do, Rachel's doctor won't start it until her platelets have leveled out a bit more so we've got a little bit of time to work on this. We've got some time to make some big decisions. We don't know what we're going to do. We don't know which direction we're going in. We wish God would chose right now to heal her. We feel rather abandoned right now. We felt we had a promise ... "It's going to be a long road but she's going to be just fine." We're not feeling that promise right now. Please pray for us.

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20-21

Let's move a mountain.

Specific Prayers:
~For discernment for Mark and Jodi.
~For complete earthly healing for Rachel.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!

Monday, April 9, 2007 10:35 PM CDT

We did end up going into the hospital for a platelet transfusion on Saturday, but I'm VERY happy to announce that we haven't been there since!!! WOO HOO!!!! Can you believe it??? We've gone TWO days WITHOUT a transfusion. New record here. We're assuming she'll need one tomorrow and from her counts today we KNOW she needs a red blood transfusion. It's gonna be a long day tomorrow. She needs to have counts drawn, physical therapy, a meeting with her doctor, and then both platelets and red cells. We won't be home until late afternoon, if we're lucky, and we'll leave as soon as we put Lance on the bus in the morning.

We're hoping to attempt school on Wednesday just for a few hours. I'll have to stay the entire time. If she wants me in her classroom, I'll stay there. If not, I'll probably go into the office and work on my quilt. That way they can easily find me if I'm needed. I'm worried about the bathroom issues right now. She will still need help. Hopefully next week that will be past but for now it needs Mom. Transitioning back to school can be difficult, too. She didn't make it to school much at all last quarter (I heard something about five days or something horribly low like that). She needs to be in school. Her teacher said that the crucial times for her were between the hours of 11:00 to 2:00. So, I think the home health care nurse can come around 9:00 and then I can take her to school at 11:00. For the first few days she can stick it out as long as she can--even if it's only for an hour. I'll be at school so we can leave when she's no longer able to "do" it. We can work up to the three hours, if need be. She can get her tutoring over the lunch period so it would be three hours of solid schooling. We'll take it one day at a time. This will also allow us to be in school during her skills classes and then head to the hospital for platelets if needed after that. Of course, this is all working in theory right now. We'll see what reality actually brings.

She continues to be very tired and in pain, but we aren't hearing as many reports of pain. I don't know if she's more stoic at home, if she's more distracted, if the pain coverage is just covering it, or if the pain has decreased. It's not like she's up running around or anything, although we did see her run at one point. Actually, today she just sat in the chair or slept in bed. That was pretty much all she did. Oh, and threw up her supper two hours after she ate. We have no idea why that happened.

She did get a bloody nose on Saturday. Thank goodness it waited until we got to the hospital for platelets. Good timing!! But, because of that, she was busy hacking up clots yesterday. Lovely, huh?

Speaking of yesterday, we didn't do anything. We didn't go to church. Instead, during breakfast Lance read us the Easter story from a book he'd gotten from the Easter Bunny. We discussed Holy Week and all that led up to Easter morning at that time because we hadn't been together as a family to do it on the actual days of Holy Week. Lance felt very special that HE got to read. Mark's Mom was making dinner for some of Mark's family so we got a care package delivered to us and we had a ham dinner with all of the trimmings and we enjoyed Easter as a family in our own home. It was very nice, it was quiet, it was laid-back, it was very enjoyable. That evening we watched a movie as a family and I don't think Rachel ever did get dressed. It was a very nice day. One I'm sure we'll remember for many years to come.

Now the count down is on for Saturday ... Rachel throws out the first pitch at the Twins baseball game. Should be a blast!! We have about 80 family and friends coming to the game and that doesn't count any of the kids' school friends and their families. We are very excited!! The stands are gonna rock!! Well, at least our section is!!!! Rachel's great-grandma (an avid Twins fan) is going to sit with us during the game. I'm not sure who's more excited about this ... Rachel or Grandma!!

Another busy day is ahead of us tomorrow. Hope it's uneventful ...

Specific Prayers:
~That Rachel's counts remain high.
~That Rachel stop needing so many transfusions.
~That Rachel's pain cease.
~That Rachel's tumors disappear.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Saturday, April 7, 2007 10:56 AM CDT

WE'RE HOME!!!!! Oh, thank God!!!

It was SOOOO nice to sleep in our own bed's last night ... well, Rachel came into ours around 1:00 am, but she considers that "her" bed, too!! :-) I walked into our house and it felt strange. It didn't feel like my house. I almost felt like a visitor in my own home. I'm still wondering around a bit like I don't know where things are.

Now I have to go out shopping today because the Easter Bunny was cooped up in the hospital, too, you know. The home health care nurse has already been here this morning and will let us know if we need to go in today for a platelet transfusion. We may not be inpatient, but we'll still be there!

Off to do the bunny stuff!

Specific Prayers:
~Thank God that we're home!
~That Rachel's pain cease.
~That Rachel's bottom heal quickly.
~That Rachel's counts remain high.
~That Rachel not need daily transfusions.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Thursday, April 5, 2007 11:52 PM CDT

Three steps forward and a couple back. Isn't that just the theme? All of Rachel's antibiotics were dropped today! She's actually had a wonderful day, too. She woke up happy and was out of bed most of the day. She was busy cleaning, playing, and puttering most of the day. It was really good to see. She did have PT this afternoon and did very well with it. But, right after PT she climbed into bed because she was going to get a massage and she started howling about her foot hurting. The tears were streaming down her face and she was in terrible pain.

We still haven't figured out the leg issue. Her ankle is still swollen although her thigh and knee look better. She still reports pain throughout the entire leg and doesn't want anyone to touch it. All of the tests that were done showed nothing to be wrong. We may have to dig a bit further.

Her bathroom issues seem to have gotten A LOT better over the past couple of days just to crumble into a screaming fit tonight as she stooled. It just broke the nurse's and my heart. You feel so darn helpless. I took a look at her bottom after that and although the fissures do seem to be healing, the skin is broken down all around her bottom. It also looks very white. Seems now that she's creating white cells, there are a ton of them in that area which can cause pain, too. Just can't win, can ya?

The plan was to send us home tomorrow (Friday). We'll see what happens with the new developments of pain. Although the pain doctor said that pain is never the reason to keep someone in the hospital for, I do wonder about unhandled pain. I don't know. The nurse and I are shaking our heads not really knowing what to think. But, I don't know if we'll ever really be able to handle the pain that happens as she's actually going. That's pretty excruciating. If we can't handle it here, I guess there's no reason to stay here now, is there?

Rachel's counts continue to climb and you can tell that over-all she feels better. She continues to need daily platelet transfusions so I know that we will be continuing to come up here on a very frequent basis. I did get the platelet donor issue resolved today (finally got to talk to someone that knew something!) so I'll be in touch with those of you who have contacted me!

Rachel is getting excited about her birthday that is coming up and is planning her party. She wants to get home so that we can finish filling out her invitations. They're all filled out except for addressing them. That list is at home. Hmmmmmm .... home. Do you think the truck will know how to get there? Heck, do you think the truck will start??? I am SO looking forward to my own bed. Mark said that we should just stay up here and make it a month. Heck, why not? :-P

Hopefully tomorrow's entry will bring good news about being home!!!

Specific Prayers:
~That Rachel's counts continue to rise quickly.
~That Rachel's pain cease.
~That Rachel remain fever-free.
~That the swelling in Rachel's right leg go away.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, April 4, 2007 7:22 PM CDT

Things are finally starting to move around here. Rachel's ANC took a jump yesterday and is even higher today ... like above 1,000!!! Tomorrow two antibiotics will be discontinued so that will leave her on one. We will watch her for 24 hours and see how she does. She will need to remain fever-free and her infection numbers will need to remain low. If they don't, that means trouble for us. If everything goes as we want, then they will switch the one antibiotic to another one and will then either make us wait another 24 hours to see how she does on it or send us home after switching it. So, right now Friday is the absolute earliest we'll be parolled with Saturday probably being a better bet.

The oncologist on the floor asked me today when I was thinking we could go home. "Uh, today?" He laughed. I then told him that I thought within the next day or two. We're going to become a part of the Karuna program which is a more expanded form of home health care. It will allow us to do IV narcotics at home, if necessary (we are hoping, actually, to be on orals in a day or two), and we get access to a lot of other services at our home versus having to come to the hospital for them. What that means is that no longer is pain a reason to stay in the hospital. We will still be at the hospital a lot due to the platelet issue, but this will allow the pain doctor to be intimately involved in her care and we want that. They've started a new pain program here (one of only two world-wide!!!!) and it's absolutely TERRIFIC!!!! The pain doctor (or Dr. Feel Good as some of the nurses have dubbed him) is quite an asset and really knows how to deal with kids. Rachel adores him (and this is the first time that she's met him). So, she will continue to be seen by him when we're in the clinic for check-ups and platelets. As I told the oncologist today, "It's not like you'll be discharging us to never see us again. We'll be back within a day or two." "True. Very true," he chuckled.

So, being home for Easter could be a reality. But, I'm kinda thinking with all of the crud that's going around that going to church with a billion people probably wouldn't be the smartest decision we've ever made. We want the entire family to stay healthy so none of us may go. We'll see. No reason we can't put on our own "service" at home. We'll see how it goes.

One of the drugs that Rachel is on is meant to stimulate her white count. Problem is, as soon as that drug is discontinued the ANC generally drops in half. Would be nice if they could just keep it going but it causes very painful bone pain once the ANC gets around 1500 or so (everyone is a bit different). That means that Rachel's counts will drop significantly once off of the drug and back into the area of wariness for germs. Bummer. It can also mean the difference between starting chemo and not starting chemo.

Chemo was supposed to start this past Monday. Obviously it didn't. We're a little leary of what to do being that this round seemed to really kick her. It will be a matter for discussion.

Blake continues to be here with us and Rachel doesn't want him to go. I thought maybe that I'd be ready to see him go home (living on top of one another in a tiny little room 24/7 can make it stressful at times, you know) but I'm actually not feeling that way at all. He's actually made a friend, too. Another boy his age also has a sister who is in-patient and also has spring break this week so he's here, too. The two of them have hit it off and have been spending a lot of time together, too, besides being at his sister's side and entertaining her as he's doing right now.

As far as the pain is concerned, Rachel's bottom has definately taken a turn for the better and she isn't having near the issues that she was although she still has several fissures. They are healing, though. Her left foot pain seems to have subsided and although she's still reporting pain (the pain doctor said that kids don't complain about pain--only adults do that; he said that kids "report" pain) in her right leg and doesn't want anyone to touch it, she is walking on it which is a huge improvement. Mark and I are thinking that being home could make a huge difference in her pain level, too. Being out of bed more could be just the ticket.

Hopefully tomorrow I'll have wonderful things to report!!

Specific Prayers:
~That Rachel's pain cease.
~That Rachel's ANC continue to rise.
~That Rachel remain fever-free.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Monday, April 2, 2007 7:27 PM CDT

It was a big day yesterday! Not only was Rachel on TV, but she lost a tooth!!! The Tooth Fairy DOES come to the hospital!!!! Rachel was ecstatic.

Yes, Rachel made her big TV debut and did wonderfully!! We're all very pleased at how well done the segment was and how Rachel was portrayed. If you would like to watch the video clip, the web address is:
http://wcco.com/local/local_story_091214813.html
You have to click on the little play button underneath the video screen and after a brief commercial, the actual segment will air. Some of you have asked how to donate money for The Wishing Well Show. The phone number for Children's Hospital Community Foundation is: 651-855-2800.

Although Rachel's counts rose yesterday and I was thinking that today we'd hit the magic number of an ANC of 500 so that they'd start weaning the antibiotics, instead Rachel's ANC dropped. Now we're looking more towards Wednesday/Thursday/Friday for release ... if things go right. I'm not holding my breath at all. We could sit at this number for days, I'm afraid. We'll see what happens. I really can't even start thinking about home because when I do and it doesn't happen, I get all ba-heebied-jeebied inside. What do you mean that's not a word? So, we take one day at a time and pray that she recovers quickly.

She's still having pain and even new pain in her left foot. At least the upper half of her body is pain free!! She started another pain medication on top of everything else plus the GI doctor added oral zinc for her bottom.

Blake is now staying up at the hospital with us as it's Spring Break for our kids. Both Rachel and Blake enjoy it and so does Mom. It allows me to get out of the room a bit more as Rachel doesn't mind sitting with Blake.

We have movie plans tonight as Rachel's physical therapist brought her a movie to watch that she thought Rachel would like. Guess I'd better go make the popcorn!!

Specific Prayers:
~That Rachel remain fever-free.
~That Rachel's pain cease.
~That Rachel's bottom heal.
~That Rachel's ANC rise quickly.
~That we be home for Easter.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Saturday, March 31, 2007 9:46 PM CDT

Rachel's MRI and bone scan show that there are no changes from the last CT scan and bone scan except that she has a swollen leg. Well ... no, duh. There is no reason that they could find (ie. no blockage, no tumor, no clots, no nothing) that could be causing the swelling. I really think her doctor thought that there was new tumor. I never thought that. Sometimes I think doctors are paid to think the worst. So, it's probably just an issue with her lymphatic system.

The wound care nurse came and looked at Rachel's bottom and decided that it was beyond what she could do for her and said it was time for the GI doctor to be called in. So, while Rachel was sedated for her scans, the GI doctor got a really good look at her bottom and so did I. What we saw made us clinch our bottoms, cross our legs, and groan. That fissure that I mentioned before is more of a crater. If you can imagine looking at Rachel's bottom with her legs pulled back, the fissure was at the 10:00 position. Well, it's actually from 10:00 to 12:00. It's really awful looking. And, she's got another one at 3:00. Poor honey. It's bad.

The GI doctor prescribed several different things to put on her bottom to try and numb it before she would go to the bathroom. He also put her on imodium to try and slow down the diarrhea. She stools every time she goes to the bathroom--which is often due to all the stuff being pumped into her. And she just sits on the toilet and sobs even with all the morphine that's being pumped into her.

We think the imodium may be beginning to work, but some of the stuff to numb her bottom have sent her through the roof. The first medication the doc wanted us to try was an instant numbing spray that is generally used for the nose/mouth area. I sprayed it onto my the palm of my hand so that she could see it and it instantly numbed my palm. She agreed to try it. I sprayed it on her bottom and her eyes bugged out of her head like dinner plates! Then, she screamed with her mouth wide open yet there was absolutely no sound. As she did this no-noise-scream, she held her breath. The child literally turned blue in front of me as she sat on the toilet. I was rushing to get a bucket of water with a syringe (which, thankfully, were already in the bathroom because I squirt water onto her bottom as she's stooling to keep it off of her skin) and said, "RACHEL!! YOU HAVE TO BREATHE!!!" She inhaled and screamed at the top of her lungs. She turned pink and I started squirting as much water onto her bottom as fast as I possibly could to try and wash it off. Poor baby!! I felt horrid!!! Needless to say, we aren't using that again! We're now using two other numbing agents that don't hurt and actually seem to be working. We're putting it on after each stool to try and keep it numb all the time and not just during the stool. She says that it's helping. Although there's still great pain (her face gets all crinkly and her body tight), she's no longer sobbing on the toilet.

Her white count is still 400 and her ANC went up to 243 today. Her inflammation marker also came down again and is just over 6. Although her counts are now headed in the right direction, we need to have her butt heal. Right now she's on several antibiotics and although I can do antibiotics at home, I need to sleep. I'm not interested in doing three antibiotics each eight hours apart. I'd never sleep. With her bottom looking the way it is, though, she needs to be on antibiotics to make sure that nothing gets infected being that they have easy access to stool. Unless things turn around really soon, I don't see us getting out of here in the next few days by any means.

Lance is spending the night with us tonight and the plan is for Blake to switch with him tomorrow. Rachel had a couple of her classmates, Kylie and Lynne, come see her today. She was absolutely thrilled. The girls colored pictures together and Rachel was really happy to see them. She misses her classmates so much!!

Sunday night is Rachel's TV debut! I, too, saw one of the advertising blurbs and thought she looked great!! Okay, so she's bald, has black circles under her eyes, and looks tired .... but she's still beautiful!!!

Specific Prayers:
~That Rachel's counts rise quickly.
~That Rachel's pain cease immediately.
~That Rachel's bottom heal quickly.
~That Rachel not have any long term side effects from radiation, surgery, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Saturday, March 31, 2007 9:46 PM CDT

Rachel's MRI and bone scan show that there are no changes from the last CT scan and bone scan except that she has a swollen leg. Well ... no, duh. There is no reason that they could find (ie. no blockage, no tumor, no clots, no nothing) that could be causing the swelling. I really think her doctor thought that there was new tumor. I never thought that. Sometimes I think doctors are paid to think the worst. So, it's probably just an issue with her lymphatic system.

The wound care nurse came and looked at Rachel's bottom and decided that it was beyond what she could do for her and said it was time for the GI doctor to be called in. So, while Rachel was sedated for her scans, the GI doctor got a really good look at her bottom and so did I. What we saw made us clinch our bottoms, cross our legs, and groan. That fissure that I mentioned before is more of a crater. If you can imagine looking at Rachel's bottom with her legs pulled back, the fissure was at the 10:00 position. Well, it's actually from 10:00 to 12:00. It's really awful looking. And, she's got another one at 3:00. Poor honey. It's bad.

The GI doctor prescribed several different things to put on her bottom to try and numb it before she would go to the bathroom. He also put her on imodium to try and slow down the diarrhea. She stools every time she goes to the bathroom--which is often due to all the stuff being pumped into her. And she just sits on the toilet and sobs even with all the morphine that's being pumped into her.

We think the imodium may be beginning to work, but some of the stuff to numb her bottom have sent her through the roof. The first medication the doc wanted us to try was an instant numbing spray that is generally used for the nose/mouth area. I sprayed it onto my the palm of my hand so that she could see it and it instantly numbed my palm. She agreed to try it. I sprayed it on her bottom and her eyes bugged out of her head like dinner plates! Then, she screamed with her mouth wide open yet there was absolutely no sound. As she did this no-noise-scream, she held her breath. The child literally turned blue in front of me as she sat on the toilet. I was rushing to get a bucket of water with a syringe (which, thankfully, were already in the bathroom because I squirt water onto her bottom as she's stooling to keep it off of her skin) and said, "RACHEL!! YOU HAVE TO BREATHE!!!" She inhaled and screamed at the top of her lungs. She turned pink and I started squirting as much water onto her bottom as fast as I possibly could to try and wash it off. Poor baby!! I felt horrid!!! Needless to say, we aren't using that again! We're now using two other numbing agents that don't hurt and actually seem to be working. We're putting it on after each stool to try and keep it numb all the time and not just during the stool. She says that it's helping. Although there's still great pain (her face gets all crinkly and her body tight), she's no longer sobbing on the toilet.

Her white count is still 400 and her ANC went up to 243 today. Her inflammation marker also came down again and is just over 6. Although her counts are now headed in the right direction, we need to have her butt heal. Right now she's on several antibiotics and although I can do antibiotics at home, I need to sleep. I'm not interested in doing three antibiotics each eight hours apart. I'd never sleep. With her bottom looking the way it is, though, she needs to be on antibiotics to make sure that nothing gets infected being that they have easy access to stool. Unless things turn around really soon, I don't see us getting out of here in the next few days by any means.

Lance is spending the night with us tonight and the plan is for Blake to switch with him tomorrow. Rachel had a couple of her classmates, Kylie and Lynne, come see her today. She was absolutely thrilled. The girls colored pictures together and Rachel was really happy to see them. She misses her classmates so much!!

Sunday night is Rachel's TV debut! I, too, saw one of the advertising blurbs and thought she looked great!! Okay, so she's bald, has black circles under her eyes, and looks tired .... but she's still beautiful!!!

Specific Prayers:
~That Rachel's counts rise quickly.
~That Rachel's pain cease immediately.
~That Rachel's bottom heal quickly.
~That Rachel not have any long term side effects from radiation, surgery, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, March 29, 2007 7:57 PM CDT

Rachel's counts jumped today. Her white count went up to 400 and her ANC is now 180!! But, her inflammation marker also went up quite a bit. The doctor has added back one of the antibiotics they took her off of yesterday so now she's on three.

This evening I was able to get Rachel to lay on her back and really pull her legs back (with support) and take a REALLY good look at her bottom. We did this this morning, but she wasn't able to pull her legs back as far this morning as this evening so the doctors (three of them) and I really didn't see anything. But, this evening I saw about a 1/4 inch "fissure" right next to her anus. OUCH!!!! No wonder it hurts whenever she stools. One of the three doctors that was here this morning was still on the floor so I had him come in and take a look. He wrinkled up his nose and crossed his legs. Uh, yeah. We'll be seeing the wound care nurses again tomorrow.

She's been taking a different type of pain killer for her leg on top of all of the morphine. I think it's starting to work as she seems to be "using" her leg a bit more. She's not standing on it yet, but she was sitting crosslegged, I've been able to touch it more without her screaming, and great-grandma who was here visiting all the way from Worthington was able to pat it and she didn't say anything. These are all very positive steps in the right direction.

I haven't heard too much complaint about her head or her throat and the back (bone marrow aspiration) has totally resolved itself. Hopefully the butt will heal with her counts coming back but we do need to figure out the swollen leg thing. So tomorrow she has an MRI and bone scan scheduled to see if there is new tumor, bone infection, clots, etc. etc. It's probably just edema from having surgery and radiation to that area (kinda like breast cancer patients get in their arms), but the doctors want to rule everything else out before they say it's that. Her right eyebrow has been swollen, too. It's more so at night. She can't even open her right eye completely because it's so swollen. It's even swollen across her nose and it hurts to touch it. It's quite strange. So, until we have a handle on all of this, we won't be going anywhere.

For all of you who have graciously said that you would donate platelets, it's still going to be a little bit. I'm once again breaking new ground here at the hospital. They have never had direct-donated platelets before so we're working on this. Hopefully I'll have some answers soon. I have found out that they don't stock Rachel's platelet type in the hospital and that's why it takes a minimum of two hours to get platlets ... even when she's actively bleeding. This is a major concern. We want them to have platelets in the hospital and were hoping if they were directly donated that they would be here for her. I'm still working on that. I'll let you know when there's been a final decision. Thanks again for offering!!

We've had some very fun visitors over the past few days with one being baby Peyton (my cousin's baby who was in the NICU). Rachel has been chomping at the bit to hold her and see her (without a window between them) so she was very excited when Peyton came for a visit. I think she'll be even more excited when we get to go to Peyton's house and hold her and play with her sister, Mara!!

Blair's funeral was a very nice tribute to her. I think she would've really liked it. I had asked Rachel if she wanted to go and she wanted to know if she had to be unhooked or if she could take her medicine pole with her. I told her that we couldn't take the pole and she chose to stay at the hospital close to her morphine. We could've gotten a pass for an hour or so and she could've taken some oral drugs or gotten a pump, but I think it was better she stayed at the hospital with all of the bathroom issues going on.

Hopefully we'll have a very restful night!

Specific Prayers:
~That Rachel's white count rise quickly.
~That Rachel's pain cease.
~That Rachel's inflammation marker drop quickly.
~That they find no tumors on her scans -- new or old.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, March 28, 2007 8:04 PM CDT

Rachel is maybe a little better today in the way she feels, but not a whole lot. Her bottom isn't any better, her leg isn't any better, but overall she's a tad better--she thinks so, too. Her white count remained the same, but her ANC came up to 84. I don't trust anything below 100 because it tends to be a roller coaster ride until that happens. She is currently running a low-grade temperature, so we'll see where that goes.

They removed her from three of the four antibiotics and added another one. So, she's on two. They were a bit worried about her kidney numbers and they decided to do some switching because of that--it had nothing to do with her white counts. She got platelets again today, also.

Rachel has a very loose tooth and strict orders from Mommy to NOT pull it out until right after she gets platelets. It didn't come out today, so now she has to wait until after her next transfusion. Do you think I'll really get that lucky??

She's lost almost all of her hair except for a shock on the top and some fringies ringing her head. It wouldn't look bad at all except for that one shock. I hope it decides to fall out soon.

Rachel's godmother, Tammy, is going to sit with her at the hospital while I go to Blair's funeral. Another funeral for one gone way too soon. Another hole in my heart in the shape of a child. Another family structure changed forever. When we were in New York, I remember meeting a family who literally came out and said that they didn't want to meet me or anyone else because they didn't want to get close to another family or care about another child that would eventually die. They'd had their hearts broken too many times and they weren't interested in it happening again. I thought to my self "how sad". Now, after having attended so many funerals and having shed so many tears for so many wonderful families and kids, I'm beginning to understand their theory. A fleeting thought of mine was to stick to myself and never get hurt again. Thank goodness it was fleeting. There may be sadness--and then again there may not be, but there will always be blessings. I don't think God created us to stick to ourselves--even in family clans. We are made for relationships. We are made to love. We are made to reach out and care. To not do so would be to lead a very lonely and poor life. So many people that I know have enriched my life immensely. Each child that I have met in this walk has touched me in some way. To not have met them would mean that I would be that much less of a person. I am rich even in my sadness. Each child left their mark. So, I may now have a Blair-shaped hole in my heart, but she has given our family blessings through some very fun memories. So, I've met more families during this stay. I've met more children whom I hope will touch my life with what they have to offer. "For richer, for poorer. For better or for worse. Until death do us part." Maybe it's not just for marriage. Maybe it's for kids, too.

Specific Prayers:
~For healing, peace, and comfort for Blair's family (Dad, Tom; step-mom, Kim; Mom-Merry; step-dad, Jeff; sister, Molly; Aunt, Nancy; Uncle, Ken; dog, Dakota--who will also miss her immensely).
~That Rachel's counts rise quickly.
~That Rachel remain fever-free.
~That Rachel's pain cease.
~That each and every cancer cell leave Rachel's body forever.
~That Rachel not have any long term side effects from radiation, surgery, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARLTHY CURE FROM HEAVEN IN 2007!!!!

Tuesday, March 27, 2007 8:51 PM CDT

Rachel had another ultrasound today on her leg because it really swelled up last night. Now it's not only her ankle, but her calf, knee and thigh are all involved. The ultrasound showed nothing so we'll have to wait and see over the next couple of days what happens. If we don't see any changes to the better, or if it gets worse, we'll probably be talking an MRI to get a better look at her vein structure at this time. On one hand we hope it's just a lymphatic issue, but there's nothing one can do for that. We just don't want it to be some of the icky things that the doctors are throwing around (like tumor). I think they're totally off base with that. Sometimes I think doctors do things just to make themselves think that they're doing something!

Rachel's white count went from 200 to 300 today but her ANC is still in the toilet. When Rachel was talking to her godmother on the phone this evening, Tammy asked her how she was. "Not good. My leg hurts. My butt hurts. My head hurts. My throat hurts. And I'm tight." Guess that sums it up for you, huh?

Well, one of the nurses just asked me if I was 30. I think I should kiss her!!! Uh, sorry Sarah!! Tee hee ... not really!!!! (Ongoing sibling "battle"). :-)

Channel Four news was here today and taped Rachel watching The Wishing Well Show. She was quite animated at one point and had all of us adults in stitches. It will be interesting to see what they pull out from that entire video segment. They filmed her the entire hour that the show was on and then afterwards interviewed her ... and me. I wasn't expecting that. I think I sound absolutely stupid. Oh, well. It's not about me. The segment will air this Sunday night at 10:00.

Rachel's primary doctor is back from vacation and she came up to check on Rachel. Pretty much, we need Rachel's white count to rise and her butt to stop hurting so that they can start taking away antibiotics. At this time, she's on four IV antibiotics and I just can't do that at home. I'd never sleep. The pain doctor (whom I think is GREAT--new guy) said that pain is never an issue to keep a kid in the hospital because she can go home on all sorts of stuff for pain. So, if she needs IV morphine she can have that at home. I think once her counts come back a lot of the pain issues will subside. It's always a double-edged sword. So, we'll see where we're at with that once the counts start coming back. They are at least thinking and beginning the planning stages for going home, but we aren't there yet. Would be nice to wake up to an ANC of 150 tomorrow!!!

Specific Prayers:
~That Rachel's pain cease.
~That Rachel remain fever-free.
~That Rachel's counts rise quickly.
~That every last cancer cell leave Rachel's body.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Monday, March 26, 2007 8:54 PM CDT

Things are pretty much the same today except that her right foot seems even bigger as far as the swelling is going. She had an ultrasound of her right leg to see if there was a clot or something clogging that would make this happen. Everything looks fine so we're just assuming that because of all of the surgery and radiation that she's had to that leg that it affected her lymphatic system enough to allow this condition at this time. Besides that, all is the same including her low counts.

We do have some really big news!! On Tuesday at 1:00 pm, WCCO Channel Four News is going to be setting up in Rachel's room to do a story on her watching The Wishing Well Show which is a show produced at the hospital just for the kids at the hospital. Rachel absolutely LOVES that show and everyday she sends an animal to be on it. They also play games and the kids can call in and play and they hear their voices on the tv and if they win they get their name on a winners board in their favorite color. They also win prizes. Rachel wants me to wake her if she's napping when the show starts. She just LOVES that show. Anyway, the producer wanted to know if Rachel would be willing to be filmed watching the show. She smiled and said yes. Guess I couldn't say no after that, huh??? We'll let you know when it will air.

Rachel's ready to watch a movie with me.

Specific Prayers:
~That Rachel remain fever-free.
~That Rachel's pain cease.
~That Rachel's counts rise quickly.
~Tell the cancer cells, each and every one of them, to leave Rachel's body forever in Jesus' name.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure!!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Sunday, March 25, 2007 11:35 PM CDT

Well, from the news today I'm beginning to think that parole just isn't in our future. Not only did her counts not change (how frustrating), but they decided to move us to a room with positive airflow. They reserve those rooms for the kids who counts are down for a long time. What that means is that the air flows OUT of the room so that the air from the hallway can't come in. Keeps the germs out there, in theory. There's also an alarm on the door so after it's open for a certain amount of time (not a real long one by any means) an alarm sounds. It's not a nice sound, either. The doors a little harder to open, too, because you've got the positive airflow going. On the up-side, this room is bigger than the one we were in before! Thank goodness my dad and his fiance were here to help with the move!! It made quick work of taking down and putting up all of the wonderful artwork she's received.

Pretty much things haven't changed. Although her bottom is no longer fire engine red, it's still pink and sure hurts her. As a matter of fact, the doctor asked her today, "Rachel, do you have any pain?" "Yes. My butt and my throat hurt." "What would you like me to do about it?" "Give me more morphine." Ahhhh ... spoken like a true six-year-old. The doctor and I busted. Needless to say, she got what she asked for. What I've found is that she's no longer screaming at the top of her lungs on the toilet. She's still crying loudly, but at least the ear-piercing shreiking has stopped.

So, although she's pretty much plateued, we had a rotten day as our friend, Blair, passed away today. Another one of our "cancer friends" who is now in the arms of Jesus. Rachel looked at me, squinted her eyes and said, "I don't like it when you tell me that." Ditto, Baby. Ditto. We ended up having one of Blair's primary nurses as our nurse this evening. Rachel was telling her about the times she had spent with Blair and about Blair's grandpa, her grandma, and her aunt and uncle. It was so sweet listening to her recount the times that she'd spent with Blair and her family. She continued to tell the nurse how nice they all were and how she was sad that Blair had died. I was quite proud of her. Pray we are out of here in time for me to go to the funeral which I'm assuming will be in a few days. Please keep Blair's family in your prayers as they walk this road that we pray will never come.

Specific Prayers:
~For peace and comfort for Blair's family.
~That Rachel's counts rise quickly.
~That Rachel's pain cease.
~That Rachel remain fever-free.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~Tell this cancer to leave her body completely and forever and leave Rachel healthy.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Saturday, March 24, 2007 8:38 PM CDT

Children's Hilton continues to be our home. We've heard rumored that we could be parolled maybe Tuesday or Wednesday, but no one is holding their breath around here. Rachel's counts are still hanging out at a white count of 200 and an ANC that's hardly countable. She continues to get at least one platelet transfusion a day and she's actually getting her second one today as I'm typing this. She's receiving very high amounts of morphine to try and hit the pain that's in her bottom and throat and although she looks drugged, she says she still has pain. Not something any of us want to hear. She said yesterday after we upped the morphine again that although the pain was better, it still hurt. Also, she has begun screaming while sitting on the toilet whenever she has to stool. It just breaks your heart.

We're not exactly sure why the screaming has begun. A couple of theories are being tossed around such as hard stool stuck up farther with soft stool coming around it, hemrroids, fissures, and abcess. As of right now, we're not sure it really matters what's causing it because she's on antibiotics that would cover anything in the butt. If the screaming continues on Monday, we may have to think about doing a little more investigative work to find out the issue.

Rachel's been fever-free today and only had one fever in the 24-hours before that. That certainly has made her feel better and it's one step closer to getting home. As long as her counts are low and she's having all of this pain, we can't even begin to think about leaving here. We can go home on morphine--even continuous IV morphine, but we certainly would prefer not to.

She now has a very distended belly, her labia is very swollen, and her right ankle is very swollen. They've been giving her drugs for that, but I have yet to see a difference. Her face looks a bit puffy, too. If we could get rid of the puffiness--which has come just in the past 36 hours, I think she'd be more comfortable.

Rachel's hair has been falling out in globs and in strings. She's very mad about it and doesn't want to talk about it. It was VERY matted two days ago and she allowed me to take all of the mats out once she had a large one sticking straight out from the left side of her head and she could see it. It can never fall out symetrically and looks quite odd. I don't suppose she'd let us shave it ...

Blake is spending the night with us tonight and he has been a wonderful distraction for Rachel. He's playing games wth her and that really helps us ALL out!! She's not as crabby and the pain isn't as bad because she's distracted. As of right now they are playing PS2--something Mom just has no clue about nor ever wants to. :-)

Thank you for all of the entries in the guestbook. We really enjoy reading them and give us smiles, giggles, ideas, and hope. Thank you, also, for the continued prayers as we walk Rachel's rocky road.

Specific Prayers:
~That Rachel remain fever-free.
~That Rachel's puffiness go away.
~That Rachel's pain cease.
~That Rachel's counts rise quickly.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, March 22, 2007 3:47 PM CDT

All tests have come back negative. There is no virus, no fungus, no bacterial stuff ... nothing. The CT scan she had yesterday shows no changes in tumor or anything else for that matter since her last scan. We're not getting worried about the tumor factor being that it's only been 12 days since chemo started. No, we didn't get the miraculous disappearance of tumor like the first time we used this drug combination, but then, I don't think we really expected to. Right now stable is a good thing.

So, they're thinking that the reason she's having fevers and all of this other stuff is related to having no counts. It is certainly not unheard of to have unexplained fevers when your body has no white count. She's had those before in the past, along with other kids who have done it, too. It's just that everything has seemed to compound within the past three weeks, so it makes you wonder if something is being overlooked. We need her counts to come back so that theory can be proven or disproven.

Rachel's bottom continues to be raw and she continues to have nasty diarrhea. We saw the wound care nurse today who has a plan of action for getting and keeping that bottom in better condition. Her throat still hurts along with head pain and back pain. The morphine has been upped again this morning and she is FINALLY sleeping. Last night was another bad night. Today she's been terribly crabby but I know it's from lack of sleep. She's been up at night about every two hours to go to the bathroom and that is such a fiascal with all of her tubes and her sore bottom. It takes about an hour between going to the bathroom, getting her cleaned up, and getting her tucked back into bed (believe me, this is a PROCESS as everything has to be JUST so--each blanket must be in a certain place with or without creases around this body part or not around a body part, etc. etc. etc.). By the time that's all said and done, there's generally a max of an hour sleep time before you start the process all over again. It really wares on you.

Rachel's counts are no better today and she continues to need platelets on a daily basis. Mark and I are anxious for us to get back home, but I don't think that's going to happen any time soon. Sure would like to be wrong about that one, though.

Thanks again for all of your thoughts and prayers. Those of you who have emailed me, thank you but please don't get upset if I'm not answering you. I have very little time to read the emails at this point let alone answer all of them. Maybe when we get home ....

Specific Prayers:
~That Rachel's counts rise quickly.
~That Rachel's pain cease.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, March 21, 2007 8:58 PM CDT

Last night was horrid. She just couldn't settle down. By 4:00 am we had only had maybe two hours of sleep. Needless to say, we slept until 10:30 this morning.

Fungal issues came up last night between a girlfriend of mine and myself and I asked the doctor about it. She had a fungal culture done on the 10th of March and it was negative. But, she's had a lot of antibiotics since then so they did more fungal cultures today. Those results take 24-48 hours.

We also did a CT scan today from head to toe to see if there's any infection that they could see that just wasn't culturing out in her blood. I've heard that the preliminary results of her head and chest are that there's no change from last scans and that her abdomen and pelvis haven't been looked at yet. We should know more tomorrow.

Pain service came today and upped her morphine more because she's continued with pain. There's now a plan in place if this amount isn't working, either. We're also supposed to see Integrative Medicine tomorrow for pain but will take the advice from the guestbook and ask about the tightness factor, too. I haven't wondered if it isn't the joint pain that one feels when you have a high fever. I don't know.

Another antibiotic was added to the cocktail today--an antifungal, just in case. For now we'll just keep keeping on and see if anything comes back from any of the tests that we've done.

I'm hoping for a restful night's sleep.

Specific Prayers:
~That Rachel's fevers cease immediately.
~That Rachel's counts rise quickly.
~That Rachel's pain cease.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miralce of a cure on earth!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!

Tuesday, March 20, 2007 11:27 PM CDT

We are going nowhere fast. Nothing has really changed since yesterday. Rachel has continued to have temperatures of 104 degrees throughout the night last night and the day today. She goes up to 104 and gets Tylenol. About an hour to an hour and a half after the Tylenol the fever breaks and she's a sweating pig kicking off all of her covers. Literally, everything is in a sweat and the sheets are wet. We get her dryed off and sheets changed and she's comfortable and then her temperature slowly starts to rise so that she's at 104 degrees just in time to get more Tylenol. It's been a continuous cycle. This evening I did see a temperature of 102.2 rather than 104. It was nice to see.

Her counts are absolutely in the toilet. I've never in the five years we've been doing this seen them that low. Her white count is less than 100 and her ANC is 2. So ... she is literally a whopping ZERO when it comes to infection fighters in her body.

Her level of infection continues to be greater than 25 and we still have no idea why. She continues to say that she's "tight" and we just don't understand that. She says her whole body is tight and that it feels like someone is giving her a really big hug. That has us all scratching our heads.

She continues to be in a lot of pain from her throat, her back and her bottom (she has horrid diarrhea). The pain is so bad that we've started a morphine drip and this evening she's actually been chatting, she actually ate something (not much but she actually swallowed something!) and although going to the bathroom is still a huge ordeal, it's not quite as big of one. It was defineately a good move.

They're running a bunch of blood tests but some of them take a while to get back. I really don't see us getting out of here any time soon unless she turns around on a dime. No counts, fevers, and high infection markers just don't go over real well around here.

Thanks for your continued prayers for Rachel and our family. We'll continue to take all that we can get.

Specific Prayers:
~That Rachel's fevers cease immediately.
~That Rachel's pain cease immediately.
~That Rachel's counts rise immediately.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!

Monday, March 19, 2007 9:40 PM CDT

Hello from Children's Hilton. Yeah, we're here ... again. Why did we ever leave? HA!! Rachel's counts continue to be zero (WBC: 100, ANC: 12) and she's running high fevers (102 to 104 degrees). She's on two antibiotics--one of them being a heavy hitter, and her infection marker which was steadily going down (from greater than 25 down to 8 on Saturday) is once again greater than 25. Everyone is scratching their heads. She's obviously got an infection brewing somewhere that just isn't being found--and isn't covered by the heavy hitting antibiotics she's on. Go figure.

They've added another antibiotic and she got another platelet transfusion today. They are also concerned about her lack of eating (who wants to eat when they don't feel good?) and are going to start an intravenous feeding for her.

The plan is pretty much just to moniter her over the next couple of days and see if they can't get her feeling better and those numbers to start coming down again. She just feels absolutely miserable. I feel so bad for her. She hasn't felt good for over two weeks. The doctor feels that she's going to continue to need platelet transfusions frequently right now because fevers eat platelets, infections eat platelets, and chemo eats platelets. Yippee. He also said that with Rachel's surpressed bone marrow (her bone marrow aspiration showed that Rachel's bone marrow isn't producing white cells as quickly as it should--a side effect from having so much chemo in one's life) that he expects her to continue to have low counts for a couple of weeks. That wasn't exactly the news we wanted to hear. Sure hope it recovers in time to keep chemo on track.

So we'll just hang out here for at least 48 hours (I'm sure it will be more then that ... sometimes it's hard to get paroled from this place) and see what happens. She's sleeping now but not real soundly. Guess that's where I'm headed, too.

Specific Prayers:
~That Rachel's pain cease immediately.
~That Rachel's counts rise quickly.
~That Rachel's infections be healed immediately.
~That Rachel become fever-free.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Monday, March 19, 2007 8:42 AM CDT

Rachel continues to have a severe sore throat and has been taking morphine for it. On top of that, she's been running high temperatures since yesterday morning. She feels rotten. We're headed into the clinic this morning for a counts check. Hoping they can put a finger on what's causing the fevers, too. She's on two strong antibiotics so it shouldn't be a bacterial infection. The last cultures from Friday are still negative. I've already approached the strep throat theory but the antibiotics she's already on would be covering that. Hmmmmm ... do you think she could actually have a VIRUS???? Ick.

Specific Prayers:
~That Rachel's fevers cease.
~That Rachel's pain cease.
~That Rachel feel well enough to go to school this week.
~That Rachel's counts rise rapidly.
~That Rachel not need any blood product transfusions today.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Saturday, March 17, 2007 7:41 PM CDT

Saturday, March 17, 2007 2:48 PM CDT

Things have deteriorated since the last entry. Rachel's throat has been hurting her quite a bit. It's not red and doesn't look irritated, yet it's been painful enough to wake her last night and put her in tears. She's been wanting tylenol and her pain was breaking through in three hours but she can only have tylenol every four hours. It wasn't the funnest night. She actually ended up having morphine for it.

This morning her throat continues to hurt and she's just punky, for lack of a better word. You can tell that she doesn't feel good. Her white count is 100 and her ANC is 5. Guess maybe we'd feel punky, too, with numbers like that. The doctor is wondering if because her platelet count has been the way it is that the scoping yesterday caused more than the usual bruising in her throat. She had been all set to send us home (Rachel's primary doctor had emailed all those on the floor today and said "Send her home") but she decided that we should stick it out for a few hours and see how she does.

Rachel hasn't eaten anything but she did ask to take a whirlpool bath. She was all smiles and a few giggles in there as we played with the toys and ran the jets but once out she just wants to be in bed. She's currently watching a movie and I think a nap is close at hand. I asked her if she was ready to go home and she said "No". Hmmmmmm ... I'm thinking that they aren't doing anything here now that we can't do at home, but she's not ready to go. We'll see what happens after she naps a bit.

Rachel's platlets last night were 116,000 and this morning they were 116,000!!! We're all very excited about that. Hopefully it was just that other infection that was brewing that was eating them all up. Guess we'll see what happens. We know when we do go home that it will be on two antibiotics but hopefully that's what will do it for her. Sure would like to see her back in school!

Specific Prayers:
~That Rachel's throat cease to hurt immediately!
~That Rachel's counts rise rapidly right away.
~That Rachel's infections heal.
~That Rachel's platelets remain above 60,000.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Friday, March 16, 2007 8:54 PM CDT

Overall, things have defineatly improved today. She had a good night and never did vomit at all. She was only up once during the night to go to the bathroom otherwise she slept well.

Although her white count and ANC stink--100 and 24 respectively, her platelets and hemoglobin were good this morning and she didn't need any transfusions today. She had her endoscopy done and the doctor only found a small place of irritation where it probably bled from. It was nothing the doctor could do anything about. She also had an MRI today of her brain so that we could get a better look at the brain tumor. I'm happy to report that the radiologist is very unimpressed with the tumor in her brain. It's not causing any swelling, it's not up against anything, it's not doing anything but just being there. Rachel's oncologist doesn't feel that that's the cause of her headaches ... neither do we.

Mark and I had a long talk last night about what's been happening. For some reason, they say they need to keep Rachel's platelets above 50,000 yet they aren't in any hurry to transfuse when she does. And then we end up with her bleeding from somewhere and then they want to do a procedure of some sort. An "average" cancer kid gets transfused at 10,000. If you are below 10,000 you need to come in and have a transfusion right away. If you're anywhere near 10,000 (such as 14,000) they will transfuse you right away. Because Rachel's platelets aren't functioning normally (we have tests that have proved that), her tolerance level isn't going to be that low. Her numbers need to be much higher than that. They need to look at her 50,000 as the magic 10,000. If she's 48,000, they need to look at her as 8,000. If she's 55,000, they need to consider her at 15,000. If anyone got down to 1,000 or 2,000 for platelets they'd be bleeding from somewhere, too. If Rachel is 43,000, then we need to consider her at 3,000 and get a transfusion right away ... none of this waiting until tomorrow.

I ran this by Rachel's doctor and she agreed. She said that whenever Rachel reaches 60,000 she will need a transfusion and there's no waiting until tomorrow. I said that the entire clinic needed to know that because I didn't want to be fighting with doctors to transfuse her like I ended up doing a couple of weeks ago in the hospital. When we were in patient in February for that week I literally got into a verbal battle (very nice one but still a difference of opinion) with a doctor about a platelet transfusion. She ended up sticking her tongue out at me (yeah, real professional, huh???) but Rachel got her transfusion! Maybe they just know me too well and feel familiar enough with me that they can do silly things like that.

Before I forget, her bone marrow aspiration is completely negative! That's really good news! Thank you, God!!!

Rachel's infection marker actually came down today from being greater than 25 to 15. They added another antibiotic when we got in here yesterday and I think that's what was needed. She hasn't had any "spells" today, either, and she looks better today than she has in two weeks. She hasn't complained of ANY pain and hasn't asked for any morphine, celebrex, or tylenol. There's no pain meds on board and there's no pain complaints of headache or side pain or back. Her back is still sensitive, but she's not complaining. This is such a HUGE improvement. I truly believe that she had the staph infection, but that she had another infection, too, that we just couldn't find. Being that things started to turn around once they added the second antibiotic just seems to confirm that. Her doctor also agreed. I told her that I didn't care where the infection was, I don't want any more tests (no more x-rays, scans, etc.) because it's working. I told her doctor that I felt the headaches were all infection related and she thinks that, too.

We're really hoping to get out of here tomorrow on the two antibiotics she's on right now. If she continues to be like she is now, I don't think they have a choice! Tee hee!! Her doctor absolutely agreed! Hopefully we'll have an uneventful night and be sleeping in our own beds tomorrow night ... Rachel in her own bed would REALLY be nice instead of Mark's and mine!!!

Rachel's classroom teacher, her tutor, her media teacher, and Lance's classroom teacher came up tonight to see her. They were like magic medicine for her. She turned around 180 degrees when they showed up!! It was the best thing for her. THANK YOU!! THANK YOU!!! THANK YOU!!! The smiles, the giggles, and the sparkling eyes were worth a million bucks to this mommy. She took a nap after they left and then woke up and played board games with her Auntie Sarah like there was nothing wrong with her at all. I thank all of you for the joy you brought to her. :-)

They just drew blood from her to check her counts, so we'll see how those platelets are hanging in there ...

Specific Prayers:
~Thank God for the negative bone marrow aspiration!
~That Rachel's counts rise rapidly.
~That Rachel's infections be cured.
~That Rachel remain fever-free.
~That Rachel remain pain-free.
~That Rachel's platelets remain above 50,000 and that she have no bleeding issues.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, March 15, 2007 11:00 PM CDT

This is going to be quick because Rachel is hollering for me to shut the computer off. The short of it is that we've been admitted to the hospital. The good news is that we're on the 8th floor because she was borderline for going into ICU. As a matter of fact, ICU had been contacted that she was here and was probably coming to them. The reason being that she's been vomiting large amounts of blood with the color getting more on the red side versus the black side (meaning new blood rather than old blood) and we don't know where it's coming from because it isn't running down her throat.

She now hasn't vomited since 1:30 this afternoon which is very good news. She vomited at 7:30 this morning and I called the doctor. Being that it was black blood (old blood) and because she had an appointment at 1:30 today to see her doctor and get a platelet transfusion, I was told not to worry and that we didn't need to come in right away.

Rachel didn't have another episode until 11:45 while I was at her school talking to her class--Grandpa Eide was sitting with her. I got home about 15 minutes later and then at 12:15 she vomited again. I got on the road to the hospital and she vomited again about 10 minutes after we'd gotten there. The timing was great!

Rachel literally deteriorated in front of my dad's and my eyes. She had been playing Uno with him before she vomited and then things went downhill. The nurses and doctors were moving pretty quickly. She's gotten lots of blood products because she lost a lot of blood and a host of other drugs plus a ton of fluids. She looks absolutely great now compared to when we came in. I've been told by her doctor that she was quite worried when she first saw Rachel and that she had priority status on the hospital floor when we first got here. Not a good place to be. But things have defineately improved.

Rachel has actually eaten quite a bit tonight. The most she's eaten in quite a while. And she's kept it down! Tomorrow she is scheduled for a endoscopy (camera into her tummy). She may also have an MRI while she's sedated.

Rachel's chewing me out because I'm still typing and she wants to sleep. I'll write more tomorrow after I know the results.

Specific Prayers:
~That Rachel not have any more bloody vomiting.
~That Rachel's counts rise quickly.
~That Rachel's pain cease.
~That the reason for the blood is found.
~That the reason for her high infection markers is found.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, March 14, 2007 10:31 PM CDT

Rachel continues to feel pretty horrid. She is still having what I'm calling "spells" of burning up to the touch, migraine headache, and chills. Everything that's associated with a high fever yet she doesn't have the high fever. It did go to 102.3 yesterday, though, and that was while on both Tylenol and Celebrex. She pretty much just lays in bed and grunts when the "spells" happen. She takes morphine and generally goes to sleep. She's got about 16 blankets on her because she's so cold. Then, everything breaks and she's sweating like a pig and feeling okay enough to hold a conversation. They happen about four times a day and last anywhere from an hour to three hours. I'm still thinking that they're from her bacterial infection because it's obvious from her CRP (level of infection in her blood) that it's not being handled yet. It's now over 25. They increased the amount of times per day that she's getting the medicine today, so hopefully we'll see improvement tomorrow. On top of that, her back is killing her from the bone marrow aspiration she had done yesterday. I'm hoping that will feel better tomorrow, too, as we close in on 72 hours from having the procedure done.

Rachel's bone scan came back having not changed since the last one which was quite a while ago!! This is GOOD news! There are two parts to the bone marrow aspiration--the liquid marrow and the boney marrow. The liquid marrow has come back negative for cancer! Good news! The boney marrow takes longer to culture out and we should have answers tomorrow.

Rachel was so sick yesterday morning that Mark and I chose to cancel the MRI. I don't think the doctors would've even sedated her in the condition she was in ... I wouldn't have if I were a sedation doctor unless it was an emergency. A brain MRI at this point in time for her is not an emergency--thank God! We've rescheduled it for next week Thursday when she will hopefully be done having her "spells" and the bacterial issue handled.

Rachel finished Day 5 of her chemo yesterday and now we sit and wait for the fall-out. That doesn't exactly help the bacterial infection issue, but it's the road we have to travel. Rachel's counts are already plummeting with a white count of only 600-something, an ANC of only 400-something, hemoglobin of 11.4 and platelets of 48,000. Being that we're still doing the "keeping the platelets above 50,000" routine, we're going in tomorrow to see her doctor, get counts checked again, and have a platelet transfusion.

I'm going into Rachel's class tomorrow morning to talk. Rachel wants to be there but we'll see how she's doing. I may have to find a sitter. We'll go up to the hospital as soon as I'm finished there. The suitcase is already in the car ... just in case. I won't be surprised if when her ANC hits 200 or less that they hospitalize her if her CRP continues to be so high and she continues to have "spells". I sure hope my next entry isn't from the hospital, but I'm not holding my breath.

Specific Prayers:
~That Rachel's "spells" stop.
~That Rachel's bacterial infection be healed.
~That Rachel's counts rise quickly.
~That Rachel not need many blood product transfusions.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Monday, March 12, 2007 9:35 PM CDT

We left the house at 7:15 this morning and didn't get home until 8:15 tonight. As Rachel put it, "We have a busy day."

She got injected with the radioactive dye (lovely) and then we went for chemo. After being in the clinic for three hours, we went for the bone scan. Rachel was sedated for it and ended up having to be catheterized because her bladder filled up while laying on the table. If it's not one thing it's ten others. After the bone scan, she went for a bone marrow aspiration. I got to sit in on this one. I'll tell you, I have no idea how adults do that without sedation (my mom used to). They just LOOK painful. I can't imagine a large needle going into my pelvic bone being a picnic. And the way they push on that needle!! NO THANK YOU!!! If I ever get cancer I'm going to be such a ninny!! Sedate me please!!!

After the aspiration, she was moved to the recovery room. While there, she had an echo cardiogram. We also found out that she needed both a red blood cell transfusion and ANOTHER platelet transfusion. Boy, she's just eating those platelets. This is the third day in a row that she's needed those. Needless to say, it made for a horribly long day.

Rachel feels crummy and is still suffering from issues from her bacterial infection. Now her back hurts, too, from the bone marrow aspiration.

Tomorrow morning we need to be back up there bright and early for a brain MRI for which she will again be sedated for. (I found it really funny today because there was a new girl that didn't know us who was trying to comfort me before Rachel's bone scan about my daughter being sedated. She was being very sweet but then I dropped the bomb on her and let her know that Rachel's been sedated well over 100 times. Her eyes kinda bugged out. I giggled. "Gads," she said laughing, "I bet you could teach me about sedation instead of the other way around." We both laughed.) After the MRI she has more chemo. Who's making bets about another platelet transfusion???? I'm not the betting type ...

I sure would like to be home a day. We've been up at that hospital everyday for over a week (and twice on Saturday). Hopefully we'll get a reprieve soon!!!

Please keep begging God for a miracle. Although negative thoughts do worm their way in once in a while and we do "go there" at times, I still can't believe that she's not going to make it. We have to have hope. As long as she's breathing there has to be hope. We can't give that up until the very end ... which hopefully she'll be old and gray for and her parents won't be around!!

Specific Prayers:
~That Rachel's bone marrow aspiration show no cancer.
~That Rachel's bone scan show no cancer.
~That Rachel's counts stay above 500.
~That Rachel not need anymore blood product transfusions.
~That Rachel's bacterial infection be cured.
~That Rachel not have any long term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!

Sunday, March 11, 2007 1:15 PM CDT

Mark and I decided that I should just stay at the hospital last night and keep the antibiotics going because we know she's got an infection somewhere. We were also able to get chemo earlier in the morning and we got home around 12:30 this afternoon.

Rachel did have another "spell" around 5:00 this morning of migraine headache, shivering, etc. so the nurses got to witness this one. She was miserable. Tylenol and morphine were dispensed.

Rachel's doctor came in this morning and said that the blood cultures taken the night in the emergency room have come back positive with a staph infection. The type of staph that it is is known for "sticking" to lines. So, rather than being in the blood so they can see it, it sticks to the sides of Rachel's port as the blood is being drawn through. That's why you can get false negatives and then have a positive quickly followed by a negative. Her doctor wants to have an echo of her port-a-cath to make sure there isn't a "blob"--that's a technical term, you know, at the end of her line that could also be catching the bacteria. She'll have that done tomorrow, too. So, once again we're doing antibiotics. Hopefully these "spells" will end soon.

Rachel also ended up getting another platelet transfusion this morning. She didn't get a very big bump from the ones yesterday. Sure hope that doesn't continue to happen. After looking back at the journals that I had written when Rachel was on this chemo before, she was getting a lot of red blood and platelet transfusions. If you would like to donate blood or platlets for Rachel, please email me. For platelet donation you can be either B (+ or -) or AB (+ or -). For red blood cell donation you must be B (+ or -). You must be able to donate at Memorial Blood Center in Minneapolis.

Tomorrow will now include chemo, a bone scan, a bone marrow aspiration and possibly a echo and an MRI. If we don't get those tomorrow, they will happen on Tuesday along with chemo. We have a busy couple of days ahead of us.

Please beg God to give Rachel the miracle she so desperately needs. Also, our friend Blair is in desperate need of one, too. Blair has been put on the ventilator and is very sick. www.caringbride.org/visit/blair Thank you!

Specific Prayers:
~For some miracles!!
~That Rachel's ANC remain above 500.
~That Rachel not need any blood product transfusions.
~That Rachel's pain cease.
~That Rachel's bacterial infection be cured.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Saturday, March 10, 2007 7:14 PM CST

We've continued to have episodes like she has when she gets a bacterial infection: migrain headache, vomiting, lethargic, shivering ... everything except the high fever. But, she's on Celebrex and that acts like Advil. Last night at 3:30 am, she was having all of the above with a fever of 101.5 and a heartrate that was so high I could hardly keep up with it to count it. We ended up in ER. I gave her Tylenol before we left for the hospital and by the time we got there, she was much better. I was glad she was much better but it was hard to explain to the doctor how bad she was when she looked so darn good!

We got home at 9:00 this morning and I went to bed. Mark took Rachel and Lance to the birthday party (yeah, that's how good she felt)and then I picked them up afterwards so that we could head up to the hospital for chemo. I found out that at the birthday party Rachel kept complaining that she was cold. When I walked in the door I didn't think she looked as good as she had when she left for the party. By the time we got to the hospital, she was miserable.

On Monday we drew blood cultures but they were negative. On Tuesday we drew them and we found out on Wednesday that they were positive. They drew more on Wednesday when we went in to get the antibiotic and we found out on Thursday that those were negative. She hadn't had any antibiotic yet so how could she go from having a positive blood culture to a negative one??? The doctor had us stop the antibiotic until Rachel proves to us that she's actually got one. We drew more cultures on Thursday and those were negative. So, last night in the ER they drew more cultures which so far have been negative. We drew more when we got into the hospital and she was so miserable.

We found out today that even though Rachel's blood cultures continue to come back negative, her CRP (measure of infection) is 20--normal is 0.3 to 0.5. So it's VERY high. She's obviously got an infection somewhere that we can't find. They are giving her more antibiotics and the doctor is leaving it up to me as to whether we go home or not. Lance is here and he wants to stay because he's never slept here before, but I'm thinking I'd rather be in my own bed being that I didn't get much sleep last night. The jury is still out on that one.

The doctor also wants an MRI of Rachel's head either Monday or Tuesday. We'll see how they're able to work that in on Monday since we'll already be here for scans and she'll already be sedated.

Hopefully we'll find this infection -- I wonder if this could still be her kidney even though it's now back to normal size. That's something the doctor and I haven't discussed. More questions.

Specific Prayers:
~That we find the source of infection.
~That Rachel's pain cease.
~That Rachel's tumors all drastically reduce quickly.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!

Friday, March 9, 2007 8:36 PM CST

It's been a tough day. It started with going to school for Rachel's tutoring. Miss Cummings said that Rachel talked about how she's going to have to take new chemo and how she's going to lose her hair. After tutoring, Rachel wanted to see her teacher, Miss Tyler. We walked down to her classroom and Rachel immediately told her about how she was going to be taking new chemo and would lose her hair. Rachel and Miss Tyler talked about it and she got her morning hug. As we were walking down the hallway to leave, Rachel saw a couple more of her teachers and immediately told them that she was going to have to take new chemo and that she was going to lose her hair. Do you think this is bugging her???

We got to the clinic to do chemo and Rachel immediately asked for morphine for her pain. She ended up having several episodes of screaming, sobbing, "mommy just hold me" kind of pain. She would be grabbing at her side and her eyes would have that wild look before she'd start to scream. She's been on Celebrex, along with morphine and Tylenol when she wants them, which acts like Advil except that it doesn't affect your platelets like Advil does. After a CT scan where they use contrast, they don't like you to use Celebrex for 24 hours due to kidney issues from the contrast and the Celebrex together. So, she didn't get her daily dose of Celebrex last night. We're thinking that it's obviously really helping with the pain. After the third screaming bout, the doctor said to give her Celebrex even though we were hoping to hold off until tonight.

After getting the Celebrex and more morphine, Rachel wanted me to sleep with her. We laid down and napped for a couple of hours--well, she did at least. Chemo only took an hour but because of the pain issues we were there for over six hours. When she woke up, she said her side still hurt but at least she wasn't screaming. At that point I told her that I wanted to go home. She shook her head no. Oh, great. We really think the hospital/clinic gives her great comfort. She knows that her issues will be dealt with promptly and she really loves her nurses. I reminded her that she had a birthday party to go to tomorrow and if we didn't go home she couldn't go to the birthday party. She had to think about that one.

Although we have oral morphine at home, she's been having to take another medicine for the itching that she tends to get with narcotics. That medicine is very minty tasting and she HATES mint. She'd rather sit in pain then take that minty medicine so that she can take morphine. Pretty sad. I think that's one of the reasons that she wanted to stay at the clinic was that she didn't have to deal with anything minty! Her doctor told us that it's possible oral narcotics will act differently than IV, so she told Rachel that maybe she wanted to try taking the morphine without the minty medicine and see what happened but that if she started to itch she would need to take it. Rachel thought that maybe that would work. After being told that and being reminded about the birthday party, and being that she wasn't in such horrid pain now that the Celebrex had kicked in, she decided that we could go home.

She certainly doesn't feel good, she's very crabby (not sure if that's from pain, from drugs, or from being mad at the whole "losing hair" bit), and she's become my velcro baby once again. We got home and she just wanted to lay in Mark's and my bed with me in it laying RIGHT next to her. You know, one can only do that for so long!!

She's currently in the bathtub with Lance literally hollering for me every two minutes. You have no idea how long this has taken to write!! I now need to write a letter to the parents of Rachel's classmates explaining to them what's happening as we know that those kids are going to have questions as Rachel loses her hair. Also, I'm going to go into her classroom next week and talk with the kids. Rachel will probably start losing her hair in 10-14 days and we want these kids knowing what's happening before that happens.

We will be back at the hospital tomorrow for more chemo. Hopefully we can stay on top of the pain and hopefully the chemo will melt the current tumors as fast as it did the ones in April 2005. This is the same chemo that we used when she was in the PICU and we had to chose between letting her die or putting her on the ventilator. It's the chemo that God used to give us a miracle. We're praying He chooses to use it again!

I am once again being paged. Guess I'd better get back to my servant duties!

Specific Prayers:
~That Rachel's tumors drastically shrink over the next week.
~That Rachel's ANC not drop below 500.
~That Rachel not need any transfusions of blood products.
~That Rachel pain cease immediately.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, March 8, 2007 9:36 PM CST

I've got good news and bad news today. The good news is that Rachel is going to be throwing out the first pitch at the Minnesota Twins baseball game on Saturday, April 14. She is SOOOO excited!!! She absolutely adores TC (the Twins' mascot) and the feeling is mutual. She's hoping to spend some time with him that night, too! If any of you would like to join us at the game, I can get tickets for $10.00 and if you'd like a hot dog and pop I can get coupons for $3.50 for that. I need to know AND have money in my grubby little hands absolutely no later than Tuesday, March 20--no gives on this one. No tickets are available after that and no exchanges or refunds are given. Of course, you're always welcome to just buy your own tickets.

Now for the bad news. We feel as if we've been kicked in the gut. Rachel had another bad bout of pain on her right side last night. Today I took her in and we had a CT scan done because I just felt that there had to be more to it than what we had found. The scan showed that every tumor that Rachel has has grown. Some have grown quite a bit. One of the tumors has grown down in between her liver and her side and that's what is causing her pain. Besides all of her tumors increasing in size over the past three weeks that she's been off of chemo (yes, her last scan was Feb. 15), she has also developed a tumor in her brain. This just isn't good. We're devastated. For the first time in five years the tears just streamed down my face right in the doctor's office.

These tumors shouldn't have grown this fast even though we weren't doing chemo during these past few weeks. It tells us that this chemo just isn't doing it, truthfully. We're switching gears and will start another chemo tomorrow. It's one that she's already seen--which doesn't thrill her doctor, but we feel it's the one that will give us the best chance at shrinking the one that's causing her pain the quickest. Then again, it could not. Radiating it isn't a very good choice because her liver is right there and you only have one liver. As her doctor said, it's also like plugging one hole when you have ten others leaking water.

When I told Rachel that we were starting a new chemo she said, "Why?" "Because your tumors have grown." She looked at me and said, "Oh, you've GOT to be kidding me." "No, I'm not." "Will the chemo be bad?" "Depends on what you think is bad." She sat there without answering but you could see the wheels turning in her head. "Would losing your hair be bad?" I asked. "Yes." "Then it's bad." "It'll never grow back." "Yes, it will." "No, it won't." "It's always grown back before, and it will grow back again." She just shook her head at me. "Tomorrow, huh?" "Yes, tomorrow."

We started working a 504 plan for her at school today and I just can't help but think "What for?" Who cares about school? She's never going to graduate so what's the point? Then I shake my head to try to get those thoughts out of my head. "What's she going to wear at her funeral?" is another question that pops into my head and I start taking inventory of her closet before my heart screams "STOP!!!!" She's not dieing today. She's been in worse situations ... I think. Yes, she has. But this isn't good. Of course, one of the options put out there was to do nothing. Not an option ... not yet. We'll know if and when that is a viable option.

So, we tread onward. The question "Why" comes to mind. Why not? is the answer. Yes, why not? And so the road continues longer. The road continues harder. We just hope the road doesn't have an end.

The next five days will bring chemo each day. On Monday we will also be doing a bone scan and a check of her bone marrow (they go into the bones in her pelvis and take some marrow out and check for cancer). It's never easy, is it?

Back to the good news, if you want to join us, please have your money to me absolutely no later than March 20.

Specific Prayers:
~That this chemo shrink her tumors drastically like it did the last time she was on it.
~That Rachel's pain cease.
~That Rachel's counts don't plummet.
~That Rachel not have any long term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!!!!!!

Wednesday, March 7, 2007 3:06 PM CST

I feel as if every journal entry I write lately is a book. I'm afraid today's is no different.

We went up to the clinic yesterday with a little girl that just didn't feel good. There's no fever, but being that she's on Celebrex that will hide a fever. She continues to complain of pain and she just isn't herself. Her oncologist agreed. Because of the pain, a whole host of blood tests were done and it was decided to to an ultrasound of her liver, gallbladder, spleen, kidneys, and abdomen. We also did an x-ray of her chest. To make a long story more on the short side, everything on the scans looks the way it should. The liver has a tumor in it, which we already knew, and everything else looks normal ... including her left kidney. It is now the same size as the right one which is very good news. Hopefully things are resolving and the pain will decide to take a hike, too.

Her blood counts were still low, including her platelets. Her kidney functions were normal except for one (the BUN) which was slightly elevated. It has climbed since Monday and it was slightly elevated then, too. Nothing alarming, but they are watching it. Also, her CRP (a measurement of infection) is elevated. I just had this feeling that something was up. I know that something isn't right. I emailed her oncologist last night and told her that my gut is telling me that there's more going on and we just aren't finding it and that until they proved to me that nothing was going on, I was going to feel that way.

Rachel got platelets yesterday and also had PT. Rachel lit up like a Christmas tree during PT because her therapist has given her a bit of a parole with her braces. As long as she's wearing her night braces (which give her ankles more of a stretch) she can now take her braces off for half a day! She is so excited that she can take them off after school and leave them off until bed time. You should've seen her smile and giggle!

This morning Rachel was the best that she's been in the morning for a very long time. She looked good, she was playing, and she told me that only her left side hurt. At 8:30 this morning, the phone rang and it was her nurse informing me that Rachel has a bacterial infection. I knew it!! On Monday I called her nurse and said that I wanted blood cultures drawn when the home healthcare nurse came out and drew labs. I knew there was something going on. I'm not sure this will resolve the pain issue on the right side, but at least I know why I was seeing some of the things I was witnessing in her.

So, we ran up to the hospital this morning so that Rachel could get a dose of antibiotics. The rest of them will be done IV at home--you know, that every eight hour thing. Bleh! Right after her infusion was complete, Rachel flung herself around and announced, "I'M ITCHY!!!" I looked at her and her face was completely red along with her head (it's easy to see through her thin hair) and she started scratching her head like a maniac. Great ... she's having a reaction to the antibiotic. She's had this drug off-and-on for almost five years and NOW she's reacting to it. A dose of benadryl was given and Rachel stopped itching, the redness lessened, and she promptly fell asleep--that's what Rachel does on benadryl. I was told that she would now need benadryl before each dose of antibiotic. Being that she's getting the antibiotic every 8 hours, that means she'll be getting benadryl every 8 hours. "So," I said, "you want me to keep her comatose for the next ten days." I didn't think that was a very good idea nor did they. There is no way that Rachel would even begin to function at school on benadryl. So, we're going to try a different drug and see if that one won't allow her to be less tired and at least function. If not, we will have to try extending the time that the antibiotic is infused into her (from one hour to two hours). This could get interesting.

Rachel's doctor through around several other things about why her counts aren't coming back. I'll have to discuss them in the next journal entry as I need to go get Lance from school and take him to Chess Club. None of those choices sound like much fun.

Specific Prayers:
~That Rachel's kidney inflammation resolve and that her left kidney be completely healthy.
~That Rachel's kidney pain stop.
~That this infection be the reason for all of Rachel's ill feelings and pain.
~That Rachel's counts climb.
~That Rachel be able to have chemotherapy this week.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!!

Monday, March 5, 2007 10:14 PM CST

Rachel made it to tutoring today but that was it. She was complaining about not feeling good before school and that her stomach hurt but I wasn't totally sure if it was a ploy or not. I was really hoping that once we got to school that she would be distracted enough to stay there. Fat chance. She got through tutoring and then wanted to go home. So that's where I took her.

She sat in the recliner and watched television for the first half of the day. She didn't eat much and would complain about her tummy once in a while. Then she had a bout of diarrhea and I saw the "normal" Rachel after that. I guess her tummy WAS bothering her. Why do I doubt her? I don't know why I do that. I just need to take her at face value.

I did ask her if there was a problem at school or a reason that she was finding it hard to go back there and she rolled her eyes and "humphed" at me and said, "Mom, I just don't feel good." Okay, okay! Mom's a little slow, I guess.

She continued to feel better and better as the day wore on but I could tell almost to the minute when the Celebrex wore off. All of a sudden she was whiny and crying that her sides hurt and that she had a headache. She got that glazed look in her eyes and just wanted to sleep. Guess we're still having pain issues ....

The radiation oncologist did confirm that what Rachel is suffering from is inflammation of the kidney from radiation. She said that there really isn't anything we can do about except treat the symptoms. She feels that some of the inflammation will resolve itself and that some will become scar tissue. She feels that the pain shouldn't last forever and that any function that she may lose from this kidney will be handled by the other kidney. Not exactly what we wanted to hear. Not devasting news but not good news, either. Hope the pain decides to leave sooner rather than later.

Rachel's counts are still being very slow to come back. We had a home healthcare nurse out to the house today to draw counts. Her white count today was only 1400, ANC 756, hgb 11.5 and platelets were only 51,000. Her oncologist really wanted to see if her platelets would hold at this level or if they were continuing to drop, so we didn't transfuse her today. We're going in tomorrow for what was supposed to be chemo--that's not happening because of her platelets--but now will just be a check-up, and for PT. Hopefully chemo will start Thursday but maybe we need to make a whole new chemo plan. This is something that will be discussed tomorrow.

They did some bloodwork on her gallbladder and there is no problem there. She continues to have pain on her right side besides the left. That will be something for continued follow-up tomorrow, too. It's always something, isn't it? Counts will be taken again tomorrow and if her platelets have continued to drop, Rachel will get transfused. Mark and I aren't looking forward to letting her platelets get much below 50,000 as we know we're then in for holding a bloody nose. No thanks.

Specific Prayers:
~That Rachel not get a bloody nose.
~That Rachel's platelets stablize.
~That Rachel's counts recover quickly.
~That Rachel's pain cease in her kidney.
~That Rachel's left kidney lose no function.
~That the pain in Rachel's right side be diagnosed and handled easily.
~That Rachel have no long-term side effects from surgery, radiation or chemotherapy.
~That Rachel be given the miracle of a cure on earth!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Sunday, March 4, 2007 10:57 AM CST

We just returned home from church and so far things have continued on the steady road. Rachel's pain has gotten MUCH better on the left side (her kidney) since she started the Celebrex. She's needed Tylenol a couple of times on top of the Celebrex but hasn't taken any morphine since the first night we started the Celebrex. What a relief! Rachel likes the fact that it's only once a day and that it doesn't make her feel and look like she's on narcotics (tired and dizzy). Her right side pain hasn't been as bad as it was the other night, but it does come and go. Gallbladder has been tossed around by the oncologists. Her primary clinic nurse, a pediatric cancer survivor herself, said that you think of gallbladder problems in those who are "fair, fat, and over forty". Her nurse said that Rachel doesn't fit the norm, but none of their kids are normal. Don't we know that. She also said that she had gallbladder problems while she was on treatment and she knows what it feels like.

The kids are having fun playing in the snow, and Rachel is looking forward to a birthday party this afternoon for one of her friends from school. We're hoping that tomorrow she'll be able to make it a FULL day at school. Oh, that would be so wonderful! A home healthcare nurse is coming tomorrow to do counts, and hopefully chemotherapy will be happening on Tuesday--along with physical therapy which she's missed several weeks of.

Specific Prayers:
~That Rachel's pain cease.
~That Rachel's counts be high enough for chemo.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Thursday, March 1, 2007 10:43 PM CST

After seeing the urologist, we have good news and bad news. The good news is that he doesn't see any tumors in the kidney at all. The bad news is that although he feels her kidney is showing all the signs of having an infection, her urine culture is negative for bacteria. That means no infection. Much to Rachel's delight she gets to stop taking the icky, white antibiotic. Much to everyone else's disappointment, we now get to travel down another road.

I had brought along the pictures that the radiation oncologist had given me to show the exact area of radiation to the tumor that was by her kidney that we radiated this past fall. The urologist looked at the pictures and then said that the radiation scatter pictured is the exact area that's inflamed on Rachel's kidney right now. He thinks she has radiation nephritis. Of course, Thursdays are the radiation oncologist's day off, so she wasn't there to consult with today. Rachel's primary oncologist will discuss the theory with her tomorrow and see if this is how a kidney that has been radiated tends to react several months after radiation.

Being that it's not an infection so we can't "make it all better with medicine", I asked the urologist what we were going to do about her pain. He asked me what she was taking. Rachel had readily taken morphine this morning. I told him morphine and he swore. Yes, he swore. Then he said that he was going to let Rachel's oncologist deal with the pain issue. That was fine by me because I'd rather just deal with her anyway.

I did ask him if her kidney was dieing and he told me that if it had been radiated where the major blood vessels go into it that then, yes, it would die. But being that it had been radiated on the outer left side that there weren't any major blood vessels there and that although it may react to the radiation by inflammation, he said that it was very much alive and wouldn't die. Now, I know that no one can know everything one hundred percent, but it was nice to hear that.

Because I now wanted a clear direction of the path that we were going to take, I decided to just go over to the clinic and see if her nurse and/or oncologist had time to chat about the game plan. I was able to see both of them together. We talked about the chemo plan, the pain plan, the information gathering plan about radiation theory, and when her next counts were to be checked (Friday). I left the clinic feeling like we had as good of a handle on the situation as we could have at this point.

I then decided to make a quick detour before we left and go see my cousin, Pam, who works in the NICU. After talking to her, I thought I'd go see my cousin's wife who's baby is in the ICC (Infant Care Center). While waiting for her to come out (I didn't want to put Rachel into the "babysitting center" as she wasn't exactly feeling great but she's not allowed into the ICC), Rachel started clearing her throat. "I have boogers running down the back of my throat," she announced. "What?!" I exclaimed. "I have boogers running down the back of my throat," she repeated. "Let me see." I took out my little flashlight that I have attached to my keychain and looked into the back of her throat. All I saw was red ... blood. NO!!!! She started hacking and trying to clear her throat (think hairball). Then she started spitting up blood and clots. I left the hallway and headed for the clinic. Sorry, Shannon, if you were confused and no one was there! Once in the clinic, Rachel's nurse looked at her throat and put us in a room.

Once in the room, almost on cue, Rachel's nose started bleeding out of the right side (the left side is the one that has had all of the procedures done on it). So, either there's still packing up there and it's redirecting it out the right side or the right side is now giving us trouble. I held her nose for 20 minutes as she gagged, hacked, and spit up blood and clots. After 20 minutes her nose was literally glued shut from dried blood (works for me). It stayed glued shut for many hours. She looked a little funny, but at least no blood was dripping from it!

Rachel's counts were redrawn and her platelets had dropped from 69,000 yesterday to 44,000 today. Again, her platelet function assay is showing that things aren't working the way they should be. There are many reasons this could be happening. Bottom line is that we just have to keep those platelets up. She got more platelets, she got more Humate P, and they started her up again on a drug that she had just quit taking yesterday (by doctor's order) that many hemophiliacs are on to control bleeding. She was happy yesterday when she got to stop taking it as it's four times a day and it doesn't taste good.

Her white count is still 1200, her hgb is 13.0, but her ANC was down to 456. I am quite curious as to why her counts are taking such a hit and I really hope we can get to the bottom of this soon.

Because we aren't sure if there is any packing left or not in her nasal cavity, it was time to either have a cottonball put into her nose or more packing-type of material. This is to stop her from breathing on that side so that there is no airflow going by her left septum and drying it out and making it bleed. The ENT wants no airflow for 3-4 weeks from the procedure. We've made it a week. Rachel chose the cottonball over the packing-type of material and her nurse inserted it today. She got to play "bad guy" for the first round. Rachel was very cooperative as she wasn't thrilled about the possible alternative (bleeding for four hours again).

This evening she started to complain about pain in her right ribcage just below her breast. We have no idea what that is and we gave her morphine and tylenol (and she's already on her celebrex) in hopes that she can make it through to tomorrow morning. It is snowing VERY heavily here and the wind is blowing quite strong. It was not a fun drive home from the hospital late this afternoon and the last thing I want to do is do it in the dark. If it were life-threatening, I guess I'd have to but we're choosing to think it's not and didn't even call the doctor even though we can tell the pain is quite severe as she's holding her ribcage and crying and saying that it's worse than the left side pain (kidney). Hopefully the morphine will help her go to sleep and the pain won't wake her.

School has already been called off for tomorrow, so we're really hoping for a day at home. I hope to find that she has no complaints about pain on the right side tomorrow and that it was just "one of those things".

It's been another eventful day and I'm looking forward to crawling into bed. Again, thank you so much for all of your prayers, your support, and your kind words. You will never know how much it means to us. Never. Thank you.

Specific Prayers:
~That Rachel's pain cease immediately in all areas.
~That Rachel's kidney inflammation go away.
~That Rachel's ANC climb immediately.
~That Rachel be able to have chemo this Tuesday.
~That Rachel not need any more platelet transfusions.
~That Rachel not have any more nose bleeds.
~That Rachel not have any long-term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, February 28, 2007 8:01 PM CST

Wednesday, February 28, 2007 11:04 AM CST

The field trip went great! Although Rachel had pain, she gritted her teeth and just kept chugging forward. She had a great time because she was paired with her "best bud" (Rachel's term). The two girls really enjoyed themselves together and they were VERY easy to chaperone. We were supposed to have a trio of girls, but the other little girl had been vomiting the night before so was unable to come. We had a very enjoyable day.

We got back from the field trip and I then had a concert to attend for Lance's class. The timing was incredible. Each second grade class performed at a time during the day and Lance's class was the last one which allowed me to do both the field trip and the concert. It was a wonderful exhibit of all they've been doing in music class this year so far. Lance is quite the guitar player! I was very impressed! :-)

During the night last night, Rachel woke up crying with pain. She's been refusing the morphine and opting for tylenol and a hot pack. I've heard from a couple of people who have had kidney infections and they've all said it was a terribly painful experience--one they never want to go through again.

Rachel was once again crying this morning, and the pain woke her earlier than normal. She did have a dentist appointment this morning which I pondered cancelling, but we made it. She did great and doesn't have any cavities!! She does have several new teeth that have come in since her last dental procedure so she needs sealants put on those.

After the dentist she continued to complain of pain but said that she wanted to go to school. So, after receiving more tylenol she went off to class. The home healthcare nurse is coming this afternoon to draw blood so that we can check her counts and Rachel wants me to be there, so I'll be back this afternoon. Just in time to give her more tylenol ....

Everybody involved, including Rachel, knows that home is always an option if the pain is too much and getting in the way of learning. She told me that she was going to make it all day today. What a trooper! This is actually her first day back "all day" (except for the hour gone for the dentist) in over three weeks. She did the two half days last week, missed Monday altogether, yesterday was a field trip, which brings us to today. I hope she can make it. If not, I guess they know how to find me. Believe me, they KNOW how to find me!! :-)

We are supposed to get another 12-20 inches of snow starting at Noon today and lasting through Friday. We haven't had hardly any snow this winter so now we're getting it dumped on us all at once. The kids are really hoping for a snow day tomorrow and Friday! I think the teachers are, too!! Could make it interesting if we need to go to the hospital for platelets. I guess we'll do what we have to do.

For those of you that have been praying for Jodi's cousin's daughter, Peyton, it's sounding like next week she will finally be cut loose from the hospital!! She's only slept in her own house for one night of her life (she was born Dec. 19), so this is VERY exciting news!!! Her website is: www.caringbridge.org/visit/peytongould Also, Blair continues to need your prayers. www.caringbridge.org/visit/blair

We thank you, again, for your continued prayers and thoughts for Rachel and our entire family. We count on those prayers to bring Rachel her cure! Thanks so very much!!!!

Specific Prayers:
~That Rachel's pain cease immediately.
~That Rachel's kidney infection clear up.
~That Rachel's counts rise quickly.
~That Rachel not need any transfusions.
~That Rachel be able to receive chemo this week.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel ge given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Monday, February 26, 2007 9:30 PM CST

Monday, February 26, 2007 6:56 AM CST

Rachel's platelet count on Friday was still extremely high! WOO HOO!! It was 185,000 yet her white count was only 1,000 and her ANC back to 230. What's up with that? No idea. Due to her platelets being where they were at, it was decided to wait three days for a counts check so that will happen today. Much to Rachel's horror, we're sending her to school for the entire day today. She started arguing about it until I told her that she has a field trip tomorrow and has to go all day today. Her eyes got really big, she nodded her head and she said, "You have to pay money!" Uh, that was handled a long time ago, thank you very much, Child.

Although she is going to go to school the entire day today, Mommy still has to go to school because Rachel doesn't want to be alone when the home healthcare nurse comes to take blood. What? I'm going to access her here at home before school, she knows the nurse that's coming, and she knows the school nurse in whom's office this will be done in. Why does Mommy have to be there? It's drawing blood for Pete's sake. But, she wants Mommy. So, Mommy will be there. Even if we don't know an exact time--we were given an hour window. Mommy will sit in the office and quilt, I guess, until the nurse shows up. Rather be home cleaning. Did I just write that?

We got a lot of snow this weekend and we stayed home the entire time. Church was even cancelled yesterday. I took advantage of being home and did taxes the entire time. Hardly came up to breathe, actually. I'm happy to say that I'm just about done ... but not quite. Because everyone was home and Mom was hibernating in the office, the house did not get it's usual attention ... and it shows. I'd rather be doing that then sitting at school waiting for a nurse to appear. The things we do for our kids!

Rachel and the boys had a lot of fun yesterday playing outside in the snow, "painting" the snow with snow paint, and sledding. Rachel was outdoors for a REALLY long time. When she finally came inside, she was crying because her feet and hands were so cold. Ahhhhh ... something normal!

We'll hopefully know around Noon or so if Rachel needs platelets today. If so, we'll run up this evening and get that done. She needs to be in tip-top shape for that field trip tomorrow. Her class is going to the Minnesota Center for the Book Arts. Don't ask ... I have no idea what or where that is. Never even heard of it before and I've lived in this area all my life! Guess I'll be finding out more about it tomorrow as I get to chaperone 4-5 first graders. I'm not sure if I should be trembling with fear or jumping up and down with joy ... I'll think I'll chose the later.

Specific Prayers:
~That Rachel's counts rise immediately!
~That Rachel be able to have chemotherapy this week.
~That Rachel remain fever-free.
~That Rachel not need anymore blood-product transfusions.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, February 22, 2007 4:30 PM CST

We spent Tuesday at home and accomplished absolutely nothing. Resting and napping were our top priorities that day. Yesterday brought about the Parent Feedback appointment for Rachel's Neuropsych Evaluation, an Audiology appointment, and a trip to the clinic to get counts checked.

The Neuropsych evaluation pretty much told us what we already knew, but it's good to have it on paper. As we already knew, Rachel is struggling with phonics and comprehension, but it was very nice to know that she doesn't have a reading disability nor is she showing any of the dyslexic-type of errors. Also, Rachel did not have any problems in the areas that children with chemotherapy related issues struggle with. The doctor truly feels that Rachel's entire reason for struggling is that she's missed so much school. WHEW!! It was recommended that she have a tutor one-on-one. I was happy to announce that that was already in place.

A couple of things that the doctor told me were quite interesting. She said that Rachel has a very strong sense of who she is and her decision making process is way beyond her age. She said that she couldn't cajole or persuade Rachel like you can most six year olds. She felt that this brings a new light on how Rachel learns. You can't tell her to do something a certain way "just because". She needs to have concrete reasons as to why doing it this way is important. "I need you to do this because ... (enter reason #1, #2, & #3). The doctor continued by saying that you expect this at 10, 11, and even 12 years of age, but not at six. Yet, she found that that's where Rachel is. She said that Rachel needs to have the structure spelled out for her and must be able to make some sense of it or to her it's just not worth doing.

The doctor ended the appointment by saying that she truly feels that Rachel's test scores show how phenomenal she is because she really expected much lower scores and in many more areas due to having missed so much school. Well, OF COURSE she's phenomenal! She's our child! She's PERFECT!!! Where's the barf bag??? Tee hee!! Actually, it was very nice to hear. On one hand it makes you sigh in relief and on the other hand it makes you feel guilty because you wonder what she'd be able to do if she were actually able to attend school the way "normal" kids do. At last count I heard that she'd missed over 40 days of school already.

After hearing what the evaluation told us, we definitely think that we're on the right track as far as the help that we've gotten for Rachel. We feel positive about the direction that we're moving and will continue to keep going forward and being proactive about it. The doctor highly recommended tutoring for the summer, too. She also wants another evaluation done this Fall so that we know where Rachel's at and can make another game plan for next year.

Rachel's audiology appointment showed that Rachel's hearing is perfect. Hmmmmmmmmmmm ... must be a LISTENING problem then, huh? Tee hee!! Selective hearing, we guess. Actually, we knew her hearing was fine, but wanted a baseline "just in case". The one chemotherapy drug that she's on has been known to cause hearing loss. Generally it doesn't happen at the dose that Rachel's at, but there's that "generally" again. We'll keep tabs on her hearing by redoing the test every once in a while.

Her counts showed that her white count was only 1200 and that her platelets were 54,000. We are going to keep her platelets above 50,000 so she got another transfusion yesterday. She will be getting her counts checked again tomorrow.

Rachel did go to tutoring this morning and also went to school for half a day. She didn't want to go to school at all. I think it's a comfort zone thing. She hasn't been there in 2 1/2 weeks and a lot has happened since then. I told her that if she felt tired all she had to do was tell her teacher and I would come and get her. She didn't think that was a very good plan. I really wanted her to try school today so I changed tactics and told her that I would pick her up at lunch time. That got me a big smile and an "OKAY!" and I got her to her reading and writing classes that are in the morning! We'll do the same thing tomorrow. I'm aiming for a full day of school on Monday.

One of our friends that I asked for prayers for about two years ago, Blair Anderson, has recurred and is having a tough time of it. If you could say a prayer for her I know she and her family would be appreciative. Her website is: www.caringbridge.org/visit/blair Thanks for your continued prayers for Rachel and our entire family as we continue to travel Rachel's Road.

Oh, there's been no bloody noses since Monday!!! YIPPEE!!! I told her teacher today that if Rachel got one, I didn't want to hear about it!!! Tee hee!!!

Specific Prayers:
~That Rachel's counts rise rapidly.
~That Rachel's nose heal completely.
~That Rachel have no more bloody noses.
~That Rachel's platelet count stay above 50,000 on it's own.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!

Tuesday, February 20, 2007 6:30 AM CST

Remember how Mark and I aren't fans of having our birthdays because things seem to go down hill concerning Rachel around them? Well, this year was no different for me. Yesterday morning at 12:30 (we've made it 30 minutes into my birthday), Rachel is hollering for me from her bedroom. I crawl from my slumber to her room where she announces, "I have a bloody nose!!" That woke me up quickly. Sure enough, she's got blood coming from her left nostril (the one she had the cauterization on). It's also running down the back of her throat. Okay, we need to hold her nose. She wants nothing to do with Mommy holding her nose and is crying for Daddy. Rachel's knight in shining armor arrives in her bedroom and holds the left side of her nose shut. It continues to run down the back of her throat and she is constantly hacking it up. After holding her left side shut for 15 minutes (our goal was 20 minutes), the blood has now started to come out the right side, too. Daddy is now holding her nose completely shut while Mommy is exchanging ice cream buckets so that she can spit and vomit blood into them and washing out washcloths. She was now vomiting up blood that had run into her stomach. Tummy's don't like blood and will always throw it up. It was truly a two person job.

After holding her nose for AN HOUR with no relief in sight, Mark and I are looking at each other. Rachel announces she has to go to the bathroom. What a circus that was getting her to the bathroom and back without letting go of her nose and keeping a bucket in front of her. She literally looked like she had just lost a boxing match with all the blood that was coming from her nose and mouth. After getting her back into her bedroom from the bathroom, I went and called the doctor (it was now about 2:00 am). An answering service takes the call and then pages the on-call doctor who will then call you back. I've never had to wait more than ten minutes to hear back from them. After placing the call, I walked back upstairs to Rachel's bedroom with the phone in hand to hear Mark telling me, "The blood is coming out of her tear ducts." WHAT??? Let me tell you, that is one of the STRANGEST things I will ever witness. Rachel literally had blood dripping from her eyes. The doctor called back and said, "I think she needs to be seen." Uh, yeah.

I looked at Mark and announced that there was no way that I could drive AND hold a nose and a bucket and keep her cleaned up. He agreed. A phone call was made to a relative who quickly showed up to spend the rest of the night with Blake and Lance. I quickly dressed and switched places with Mark in the nose-holding position so that he could get dressed. We packed things up and headed out with Mark at the wheel and me playing nose-holder/clean-up manager.

We got to the Emergency Department around 3:00 am and I have truly never seen them move so fast. They dumped a TON of fluid into her VERY fast and after a quick evaluation of the situation, the ENT was called. Rachel's platelets were still 31,000 which for a chemo kid isn't exactly bad. Not good, but not bad. She really shouldn't have been bleeding like that. Even so, they gave her another platelet transfusion. Her hemoglobin was still thankfully at 12.0 which is exceedingly high for a chemo kid. She really got a boost from her last transfusion of red blood cells!

By 4:30 am Rachel was back in surgery so that the ENT could once again go up into her nasal cavity to see what was going on. Poor kid had had her nose held for four hours straight. She felt horrid. Afterwards, the ENT told us that the inside of her nose on the left side is just raw. It still hasn't healed from the cauterization done almost two weeks ago. Hard to heal when you have no white count--which, by the way, has dropped to 900 with an ANC of only 330. He said that he only cauterized a few small areas but that the main thing that helped and will continue to help is all of the packing. He packed her FULL of packing on the left side and hopes that it won't come out for two weeks. He said that we need to keep her from breathing through that nostril for three to four weeks to allow it to heal without drying out. He said that a humidifier in her bedroom won't even begin to touch the issue (so much for the Hello Kitty humidifier Mark bought for her less than a week ago) and that there was no way we could get Vaseline up high enough into her nose or put it in often enough for it to be of any value, either. We needed to keep the airflow restricted on that side. That means that when the packing comes out, we'll need to convince her that she needs to have a cotton ball with an ointment on the end stuck up there to keep her from breathing out of that nostril. Doesn't this sound fun? The ointment is just to keep the cotton ball from sticking and has nothing to do with anything else.

Rachel was then admitted to the hospital for observation being that she had such a rough time after the last procedure. We all actually got to lay down and cat nap around 6:30 am.

Because of the bleeding issues at what was considered an okay platelet count, Rachel's doctor chose to order a host of labs done on her platelets. It was found that Rachel's platelets aren't working the way they are supposed to be. From the results, they are saying that it's drug related. Now they are trying to figure out which drug. Is it one that she's on now or is it one that she's been on in the recent past? Once they figure that out, they will try and decipher if it's something that will be able to fix itself once the drug is totally out of her system or if this is going to be a permanent thing. In the meantime, she will be getting her platelet count checked every-other-day. We aren't going to let them fall below 50,000 at all.

On the healing side of this, the oncology pharmacists looked into which drugs she's been on or is on that might inhibit healing. It was found that one of the drugs she's currently on can inhibit healing and that one she was just on before this current chemo plan also inhibits healing for about 60 days after it's use. We're now at day 49 from using that drug so she's got about another two weeks to deal with the effects of that one. Currently, we've delayed chemotherapy for this week and the one drug that inhibits healing is one that works in conjunction with her chemo and she takes that one orally and daily at home. We've discontinued that one and won't start it again until all of this is figured out.

Rachel was doing extremely well yesterday. She didn't take anything for pain. Well, she asked for oral morphine but then refused to take it once it was presented to her. Whatever. Although very swollen and very tired, she was doing very well by yesterday afternoon. Rachel wanted to stay overnight at the hospital, but Mark and I were on a totally different page than she was. We think she wanted to stay for two reasons. One being that she thought Daddy would stay the night with us (he explained to her that he would not and would be going home without her if we stayed) and two, she feels very comfortable there and knows that if anything happens it will be attended to right away rather than hours later because of drive time and going through the Emergency Department.

Rachel's counts were checked again and it was found that her hemoglobin had dropped to 8.8 and they had decided beforehand to keep her above 10.0 at this point. So, Rachel received another red blood cell transfusion, too. She was given another blood product called Factor VIII last night to see if it would help her platelets become "more sticky". I have yet to hear the results of that test as we chose to come home right after it was drawn.

We got home last night around 7:30 and pretty much dragged our sorry butts into bed soon afterward. Rachel is still currently sleeping, but she's scheduled to have an audiology test (hearing test) and physical therapy today. One of the chemotherapy drugs she's on has been known to cause hearing problems. It rarely happens at the dose that she's on, but we want to see where she's at and follow her a bit more closely as long as she's on this drug. Depending on how she's doing when she wakes up will depend on whether or not a drag her out for those two things.

Surprisingly, Rachel hasn't said too much about the packing in her nose. Mark said that she did tell him last night that she doesn't like it, and that he explained to her the reasoning for it and how it sure is better than bleeding. She said she didn't like it because she couldn't breathe through it, and he said he couldn't breathe through one of his nostrils right now, either, so they were the same. He didn't think she was impressed. Then he told her that some kids that get that procedure done have packing in both sides and that they can't breathe through their noses at all but have to breathe through their mouths. She thought she had it better than them. Whatever it takes, right?

We'll see how today pans out. I do think that rest is more important than a hearing test and physical therapy at this point, although she missed PT last week, too. I'm thinking that I wouldn't mind going back to bed for a few more winks, either. Had to get up to get kids off to school, but missing an entire night's sleep is going to take a bit to catch up on.

So, Happy Birthday to me! Tee hee!!! Good thing we celebrated Sunday night. Mark made my favorite meal on Sunday because he had the time to do it where he wouldn't have on a weekday. The kids were pleading with me to give me their gifts that night and Mark said, "Well, we are all here right now and we never know what tomorrow will bring." How true is that statement? We have to take the chances we have whenever they present themselves because the best laid plans never seem to pan out for us. So, I opened gifts and had birthday cake on Sunday night. I'm really glad we did!!

Specific Prayers:
~That Rachel's counts climb quickly.
~That Rachel remain fever-free.
~That Rachel's platelets function correctly on their own.
~That Rachel's nose heal properly and quickly.
~That Rachel not fight about the nasal packing.
~That Rachel have no more nosebleeds.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, February 15, 2007 8:20 PM CST

Valentines Day ... a day of red, right? Rachel woke up in the morning and the first thing she said was, "I have blood running down my throat." "No, you don't," I replied. "Yes, I do." "It's snot." "No, it's not." Great. I creakily climbed out of bed and got a flash light. "Let me look." She opens her mouth like a lion and in the back of her throat is red running down. I just sat there looking at it with the flash light wanting to scream, wanting to swear, wanting to wring someone's neck. I didn't even care whose neck ... just somebody's!

Before I could even ring for the nurse, I hear, "I need a Kleenex ... my nose is bleeding." NOOOOOOOOO!!!!!!! Sure enough, bright red blood is dripping out of her right nostril (the left one is the one she had cauterized). Her platelets were 28,000 which is higher than several of the numbers she's had since we've been there so I was quite surprised. Rachel's doctor was rounding on the hospital floor and it was decided that she would get platelets but that she also needed red blood cells since her hemoglobin was only 7.2. Her CRP had continued to come down while her white count and ANC had continued to climb which are all good things. But this nose issue was not making any of us happy. Dr. Bendel felt that Rachel should also get to go home and was hoping that we could get both platelets and red blood cells in before the time that we needed to go leave for her party and that when we left, we wouldn't have to come back. Yeah, right. I knew better than that.

We had a hard time getting Rachel's nose to stop bleeding even after she had platelets. Finally, about 10 minutes after we needed to be leaving, it stopped. WHEW!! We ran out the door promising to be back for blood and our stuff. When we were about half-way there, Rachel's nose started up again. Oh, for Pete's sake! We ended up dealing with it for her entire party. It would quit for five minutes and then we'd be out in the hallway dealing with it. This went on over and over and over again for the hour that we were there. But, Rachel was happy she was there and I guess it was worth it. You look at things MUCH differently when you're six then when you're ... well ... older. :-)

That stupid nose never did stop bleeding. We went back up to the hospital and it continued to bleed. I was seeing the day we had at the clinic a week and a half ago replay before my very eyes. It continued to bleed and bleed and bleed and Rachel wouldn't let me squeeze it, she wouldn't squeeze it, she wouldn't hear of us putting anything up there and she was throwing absolute fits that we wouldn't let her blow her nose. "But there's a clot up there that has to come out!!!!" "No, Rachel, we need the clot to stay in." "NOOOOOO!!! It feels funny!!!! I want it OOOOOUUUUUUUT!!!!" "No, Rachel, it needs to stay in." "NNNNNNNNOOOOOOOOOOOOO!!!!" This conversation is being done between Rachel, me, the doctor, and her nurse. Rachel, by the way, is screaming at the top of her lungs. Needless to say, they ripped up the discharge papers that were waiting for us.

A sedative ended up being given. She was then calm enough to listen to us and then allowed me to pinch her nose for 20 minutes. Her nose quit bleeding and has stayed that way since. She got her blood and even more platelets. She also started running another fever last night.

Over that past couple of days she has digressed and has wanted me to sleep in bed with her at night. We don't exactly fit as well as when she was two, but we made it work. Last night she would reach out to make sure I was still there. She hasn't wanted me out of sight much unless someone is sitting with her during this stay.

This morning Rachel woke up like a whole new person. She hasn't had much pain the past couple of days (the oral morphine is working well) and her hemoglobin was tanked up real high. She was smiling, being a chatterbox, using her sense of humor, and just all around being a complete joy. Being that her scans were supposed to be tomorrow, I asked if we could get them done today being that we were still there. Luckily, they had an opening and she went down for scans.

Overall, things look better!! I don't have the final report but I did get to see the scans with my own eyes. It seems that the tumors in her liver have gone from three tumors to one and that that one has shrunk. Her lung disease certainly looks better. The tumor that we radiated is completely gone. A tumor in her abdomen is smaller and another area of disease around her mediastinum (sp)is smaller. The tumors in her pleura are stable or have grown slightly ... but we're not too concerned about the growth because 1) it could just be the way that the scan was done and the way they cut the pictures that makes it appear to have grown slightly but it actually hasn't; or 2) that it did actually grow in the weeks following the last scan when we weren't doing any chemo but that it has shrunk but we're just not seeing it; or 3) it actually has grown a tad. We've decided to not get excited about it and go with all of the other good news. Hopefully I'll have the final report tomorrow but for sure by Monday.

To top it off, we're home!!! We're very glad to be here. The plan right now is for home care to come out on Monday and draw counts to see if she can have chemo on Tuesday. If she can't have chemo it will mean that she needs a transfusion so we'll either be going to clinic on Monday for a transfusion or Tuesday for chemo. We're really praying that it's Tuesday.

Rachel has really enjoyed all of the massages that she has received while staying in the hospital and they have really helped her with her painful shoulders/neck area. We're thinking of adding massage for her each week. We should be able to do that the same day that she has physical therapy or chemo. I learned today that they will come to the clinic while we're there or we can go to them on an outpatient status. She's looking forward to that!

Specific Prayers:
~Thank the Lord that we're home!
~Thank the Lord for the shrinkage in Rachel's tumors!
~That Rachel's nose remain free from nosebleeds.
~That Rachel's counts continue to climb and her CRP continue to drop.
~That Rachel remain fever-free.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Tuesday, February 13, 2007 10:53 PM CST

It's been a two steps forward one step backward kind of day. Rachel started out doing very well today with a pain level of four on a scale of one to ten. She got another massage for her very tight muscles in her neck and shoulders and will continue to get them daily as long as we're here. The massage therapist said that she's got one area (which she complains about a lot) that is very tight and she can get to go away but that immediately comes back. The therapist wasn't impressed with that.

Rachel's counts today were about the same as yesterday. Her white count did jump from 400 to 600 but her ANC actually went down a tad and her platelets are now 61,000. Her CRP only went down by one. The doctor did say that if we don't get to go home tomorrow that Rachel should be able to get out on a pass to go to her Valentine party at school if she's able to be on oral morphine. Keep every body part crossed!! :-)

After almost five years of being at this hospital, Rachel finally decided that she wanted to see the whirlpool bathtub that they have on the floor. After seeing it, she decided that it would be fun to have a bath in it. So she did! Oh, what fun was had!

Afterward as she was laying in her bed, her nurse asked her if she had any pain and Rachel said no!! NO!!! We all wanted to do the happy dance. That was the first time in almost a week that she didn't have any pain anywhere. We may take more whirlpool baths more often!! It wasn't long after that, though, that she started crying about her head. It wouldn't surprise any of us if the humidity in the whirlpool room got her sinuses moving and caused the extra pain.

Several hours later, we started the oral morphine. Everything went great for about eight hours at which time I could tell she had a fever. With that fever came another headache and she was screaming that she needed the pump turned back on. We got her a dose of "break-through" morphine and that helped her. The pain service person who came today said that morphine may not take a headache one hundred percent away, but it will still help it. That must be the case for Rachel because she settled down once we got that into her. Thank goodness it's fast acting!

More blood cultures were drawn tonight because of the fever. I sure hope that she hasn't gotten anything! The hospital is FULL of lots of yucky stuff and with her counts low ... oh, let's not go there. I think we'll be discussing the antibiotics she's on and if there needs to be a change or not.

I guarantee we won't be discharged tomorrow because of this fever. Hopefully she will feel good enough to go to her party, but if not I guess that's the way it is. As long as she's still running fevers and her counts are low, we won't be going anywhere. The soonest I see us going home right now is Thursday. And that's if her counts climb. She's also got quite the case of diarrhea. They're hoping it's just from the antibiotics but are going to culture it "just in case". I wonder if she'll even be able to start chemo next week ...

Specific Prayers:
~That Rachel's fevers cease.
~That Rachel's pain cease.
~That Rachel's counts increase rapidly.
~That Rachel be able to attend her Valentine's Day Party.
~That Rachel's upcoming scans show drastic shrinkage in all areas.
~That Rachel not have any long-term side effects from surgery, radiation, or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Monday, February 12, 2007 10:55 PM CST

Today was a very active day. Pain Service wasn't impressed that Rachel's neck and shoulders are tight and in pain from guarding herself from pain. They upped her morphine dose. She's getting a low dose to start with and it's not making her sleepy, so they chose to up it a bit. The doctor said that the older kids that have had procedures such as this done have told them that it is very painful and even when you think that the pain should've subsided by, it's still very painful. She wasn't at all surprised that Rachel was having this pain and especially if they were at all thinking that she had a sinis infection on top of it. They also said that transferring to oral morphine is an easy switch as far as dosing is concerned because they can easily match the oral dose to the IV dose. They said it's much harder to get the dosing correct when you switch drugs and that the dose of oral narcotic that was tried on Saturday just wasn't high enough. We're going to try the oral dose tomorrow in hopes of tweaking that before we head home. They want to see her on the oral morphine at least four to eight hours before we think about heading out the door. They also said that morphine isn't a good pain reliever for headaches. They want her on round the clock dosing of Tylenol and not just when she has fevers.

There was a change in the guard as far as oncologists rounding on the floor. I really like the doctor who is on this week and he and I see eye-to-eye. He totally agreed with me that something is going on and said he wanted a CT scan. He also said that as long as she needs the morphine drip, then she needs it. No questions, no nothing. She gets what she wants and needs. Simple as that.

The ENT assistant came by and said that all of the packing is out of her nose and that the scab from the area that was worked on was visibly seen. It was agreed that a CT scan was needed.

The CT showed that Rachel has a sinus infection going on. Did we ever doubt that? Her ANC was up to 150 today, although her white count remained at 400. Her CRP was down to 17. After spiking a fever last night, they did add another antibiotic. The big news is that her platelets were still 90,000 this morning!!! That was thrilling!!!

So the plan for tomorrow is to see if she can handle the switch to oral morphine. To get out of here her counts need to come up and her CRP drop significantly along with adequate pain control. Tomorrow will be a big day. I'd really like to see us leave here Wednesday morning in time to have her attend her Valentine party at school for an hour that afternoon. That gives us two mornings of counts and a solid 24 hours for pain control. Pray we can do it!!!

Specific Prayers:
~That Rachel's pain be adquately controlled with oral medication.
~That Rachel's white count climb above 1000 rapidly.
~That Rachel's CRP drop below 8 rapidly.
~That Rachel have no more fevers.
~That Rachel be able to attend her Valentine Party.
~That Rachel not need anymore transfusions this week.
~That Rachel not have any long-term side effects from radiation, chemotherapy, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Sunday, February 11, 2007 10:53 PM CST

We are still guests at the Children's Hilton. I'm now thinking Tuesday at the absolute earliest and possibly even Wednesday before we even think about heading home--let alone actually doing it.

We tried putting Rachel on an oral narcotic and stopping the morphine drip, but within an hour of stopping it she was screaming and beating her head with both hands. Oh, that was fun. It was an hour and a half before we got the pain totally under control again after having to play catch-up. She's also been running a temperature of around 100.5 while on regularly scheduled Tylenol.

This morning, Rachel's counts were even worse. Her white count was 400, her ANC was a whopping 86, and her platelets were only 31,000. We were very disappointed that she'd eaten through so many platelets already after her transfusion yesterday. Her CRP is 21--this is VERY elevated. I believe normal is around 0.3-0.5 or something in that range. There is defineatly something going on that's eating her white cells, her platelets, and elevating her CRP (C-Reactive Protein).

The doctor came in today (same one as yesterday) and we do have a difference of opinion of what's going on and where we should be headed with everything. She really thinks that Rachel needs to be out of here. I'm shaking my head thinking how in the world can we even think that when we certainly don't have the pain under control, she has no ANC, she's needing at least one platelet transfusion PER DAY, and her CRP is screamingly high??? The kid obviously has something going on that isn't being addressed.

After much discussion, the plan is for Pain Service to see Rachel tomorrow and see if they can come up with a creative idea to control Rachel's pain on oral meds. Due to incompatibility with some drugs and morphine, we've had to shut the morphine off a couple of times today. Each time that she reaches that 45-60 minute mark, she's in udder agony. I've really been having to watch how they're dosing her with the different drugs to make sure she's getting adequate pain control. I even made one of the nurses stop an antibiotic in the middle of it today because she was hurting.

The ENT that did her procedure is going to be called to come see her tomorrow to see if he has any ideas, too. The doctor wants his input on antibiotics and pain, too. I still can't believe that he sent her home only on Tylenol with Codeine. If we didn't have such easy access to doctors and the hospital, I'm absolutely cringing with where she would've been. I can't even imagine. It's something I'm going to ask him about.

Rachel has spiked a fever within the past hour and they have drawn more blood cultures on her and are planning on adding another antibiotic. A new doctor should be rounding on the floor tomorrow and we are really hoping to get to the bottom of all of this. I'm going to ask the ENT doctor about doing a CT scan of her head to see if it is a sinus infection or if that will be a mute point because of possible packing still being up there, swelling from the procedure, etc. I don't know if they'll be able to tell all of that stuff from infection or not on the scan but I do know that a CT scan is how they defineately can tell if it's a sinus infection. It will be a topic for discussion. She also has lost some more of her packing and was quite happy that she could breathe even better.

There is no way that we want to bring her home without knowing exactly what's going on at this stage in the game. We are also not interested in bringing her home when she's getting daily platelet transfusions. We certainly need to know what her platelet numbers are doing at this point which means she needs daily counts taken. There is no way that we want to end up in a severely critical position because we took her home too early. There are just too many unanswered questions for us to even think about packing up and leaving.

We have really appreciated all of you who have come and visited us--even if only briefly. Rachel's classmates made cards for her and they all are hanging up in her room. I've gotten several emails about not wanting to call and disturb us and I'll just remind you that the best way to reach us is by calling my cell phone. If we're busy I won't answer it, if we're sleeping (napping, resting, gone to bed early or sleeping late) I'll have it turned off. You'll be able to leave a message both ways. If it's a good time, I'll talk to you. I'm able to control the calls with the cell phone so you'll never be disturbing us.

Thanks for all of your prayers as we sit and wait this one out.

Specific Prayers:
~That Rachel's fevers cease.
~That Rachel's counts rise quickly.
~That Rachel's pain be controlled on oral medications.
~That Rachel's CRP drop rapidly.
~That we figure this whole thing out.
~That Rachel's upcoming scans show drastic reduction i all of her tumors.
~That Rachel not have any long-term side effects from radiation, chemotherapy, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Saturday, February 10, 2007 3:22 PM CST

We are still at the Children's Hilton with things seeming to be going in different directions. Although Rachel is seeming to be a bit more "human", she still isn't the Rachel we know.

Yesterday, Rachel's counts went down. Her ANC was only 277 with a white count of only 500. This is the lowest these have been on this new chemo--and we skipped chemo both on Tuesday and Friday. We are quite disappointed ... and confused. Her platelets were only 31,000 and they've decided that they'd like to keep them at 70,000 while she's healing from this nasal procedure, but feel that's unrealistic and are settling for 50,000. So last night Rachel got a transfusion.

This morning, Rachel's platelets were only 6,000!!! WHAT?!?!?! She got another transfusion this morning ... STAT! Also, her white count continued to drop and was 400 and her ANC went down to 130. I sat looking at those counts and just shook my head. I talked with her nurse today who is one of her primaries and has been with us through our entire ride on this road and she said that when you have an infection all of your white blood cells are going to that infection so that's why she would have a low white count/ANC. She also said that when you have an infection you eat through your platelets. I reminded her that nothing has grown from her blood cultures (huge surprise as I would've bet our house that she had an infection in her line). She said that just because her cultures haven't grown anything doesn't mean she doesn't have an infection, it just means she doesn't have a BLOOD infection. She can still have an infection (such as a sinus infection) without it growing out in the culture dishes. You learn something new everyday!

They did draw some more blood after she got her platelets to make sure that she got a big enough boost from them and that she wouldn't need a second transfusion today. They were at 101,000 which is great, but the number that will really matter will be the one tomorrow morning. We need to know how fast she's chewing through them. Also, they took a CRP which is a measure of infection. It doesn't tell you what the infection is or where it is, but it can tell you if your body is fighting something. The results from that aren't back yet.

The doctor came in and asked what we were doing there. Uh ... okay. She feels that Rachel looks too good to be in the hosiptal. There's also a ton of critically ill kids on the floor right now so, of course, Rachel looks great compared to all of them. But, Rachel was once again running a fever this morning and she didn't see her while she was doing that--all covered up in her bed not wanting anything to do with anyone because she didn't feel good. She's also still on a morphine drip. Uh ... how are we going home on that?

The plan right now is to give Rachel some oral pain meds and stop the morphine drip as soon as she wakes up from her nap. We'll see how she does on that through this evening and tonight and we'll see how her counts are doing tomorrow. I'm pretty much assuming that if her CRP numbers are greatly elevated (which I'm betting my house they are--tee hee!!) and her counts are low, we won't be going anywhere soon. I like the fact that the doctor is being optimistic, but I think she's being overly optimistic ... so does her nurse. Her nurse stood here and just shook her head as the doctor was talking to me. When the doctor walked out, I said, "She isn't going anywhere that soon." The nurse agreed with me. "Don't let her push you out of here, Jodi. She didn't see her between 8:00-9:00 this morning." "Don't worry. I don't want to leave here just to turn around and come back." We don't have "get-home-itis" quite yet!

The nurse just walked in and said that her CRP numbers are greatly elevated ... I knew it! We'll see what happens now ...

Last night as Rachel was sitting in her bed, her eyes got really wide and she exclaimed loudly, "Something from my nose just went down my throat and it's stuck!!!" We tried to get her to hack it up without any luck. She drank a bunch of water but it was still there. I gave her something to eat and eventually it went down. We have no idea if it was a clot, packing, or just some gunk. She hasn't vomited anything up, so we're kinda thinking it was part of the packing as your tummy doesn't like blood and generally gets rid of it via up and out your mouth (but we have no way of knowing for sure). She did announce that she was now able to breathe out of her nose and was rather happy about that. If the kiddo's got a sinus infection she certainly will be having a lot of pain in the areas that she's describing along with the wonderful packing. I can't even imagine!

For now we're sitting tight and will start making the moves to get out of here, but I truly don't see us going anywhere until at least Monday. I could always be wrong though ...

Specific Prayers:
~That Rachel remain fever free.
~That Rachel's CRP numbers drop.
~That Rachel's pain cease.
~That Rachel's counts start climbing immediately.
~That Rachel's platelets stay above 50,000.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, February 8, 2007 10:43 PM CST

No news has not meant good news this week, I'm sorry to say. I got a phone call from school on Monday afternoon saying that Rachel had had another bloody nose but that it had stopped. About 15 minutes later, I got another phone call from school saying that another bloody nose had started as soon as we'd hung up the phone and that this one wasn't stopping. I went and picked her up and brought her home. We would get the bloody noses to stop, but they wouldn't stay stopped. I was in touch with her nurse at the clinic and the decision was made to not go in because they weren't heavy and even if they were starting again, they were stopping for periods of time.

I ended up getting up twice during the night with her having bloody noses. Being that we were going into see Rachel's "braces guy", Scott, in the morning, I figured we would swing by the clinic and get her counts checked right afterwards to see what her platelet count was. The weather decided to be uncooperative Tuesday morning and it was snowing pretty good right during rush hour. Needless to say, everyone forgets how to drive and the traffic was HORRIBLE. It took me two hours to get into the hospital--it's usually a 35-45 minute drive depending on which way I go.

When Rachel got up Tuesday morning, I didn't think she looked very good. She was super pale and just didn't look right. She said she was tired which I didn't doubt one bit from looking at her. I called her nurse to tell her that we'd be there after seeing Scott. On our two hour drive in, Rachel's nose started to bleed and just didn't want to quit. Rachel started getting a terrible headache and she kept complaining that she was cold. Oh, these just aren't good signs. And, of course, I was doing four miles per hour in bumper to bumper traffic!! UGH!!!

We got to the hospital and I chose to skip going to see Scott and we went directly to the clinic. We found out that her platelets were only 11,000 and her hemogloblin was 7.8. We chose to transfuse both. While we waited for the platelets to show up, we were unsuccessful in getting Rachel's bloody nose to stop. She was even vomiting large amounts of blood. It was not a good thing. Rachel's heartrate was high meaning that it was working harder to pump blood because she had lost so much blood. Her blood pressure was low because there just wasn't as much blood volume there to push. And her hemoglobin dropped to 6.3 in two hours time. I'm glad the platelets came when they did. They also gave her an entire unit of platelets when generally she only gets half. It was not a fun day. During this fun time, Rachel's doctor decided to have an ENT come look at her and see if he could see anything up in her nose that could be causing this problem. Her left side was always the one giving us problems and she wondered if there was a "bleeder" up there and if something could be done about it. He came in and looked but said there was just too much blood for him to see around and that he thought it would be best to come in the next day once her platelets were up and go in under anesthesia and look around.

So after spending another 12 hours at the hospital on Tuesday, on Wednesday morning we came back in and Rachel went into the OR so that the ENT doctor could see if he could find anything up there that was causing all of her problems. As I told her doctor, I found it really strange that she's never had nosebleed problems and now any time her platelets got below about 45,000 she was having all sorts of nosebleed issues. I felt there had to be something more than just a dry nose ... more than Vaseline could fix. Even the ENT said on Tuesday that there's no way that Vaseline could do anything for the amount of blood that she was losing. Because of the nature of this exploratory procedure, they had to intibate her and go through the whole nine yards of tubes down the throat and yucky anesthesia. The procedure itself lasted all of 15 minutes and he found a very large bleeder which he coturized--I know I spelled that wrong but I don't have a dictionary handy at the moment. The recovery from anesthesia took the rest of the day. Another entire day spent at the hospital.

Rachel's nose was full of packing and she was not a happy camper. She was also in pain. They sent us home on Tylenol with Codeine which really didn't seem like heavy duty enough stuff to me, but what do I know about nose procedures? At 2:00 am, Rachel was screaming in pain. I gave her some more Tylenol with Codeine and waited. At about 2:20 Mark said, "She feels quite warm to me." NO!!!! I felt her. He was right. I got the thermometer and she was at 101.7. I started making sure that the suitcase was ready to go, but really hoped that the Tylenol would kick in and that I wouldn't have to make a phone call. By 3:00 am she was up to 102.4 and she was chilled. The phone call went in and by 3:20 am we were on the road to the hospital. Rachel felt terrible. She was in horrible pain.

When we got to the ER, they gave her morphine and took cultures and counts. Sadly, her ANC had significantly dropped from the day before. Rachel was still one miserable pup. Her nose hurt, her eyes hurt, her head hurt, her feet hurt, her neck hurt, her shoulders hurt ... she just hurt. The oncologist said it was up to me if I wanted to take her home and try to deal with the pain there or if we wanted to be admitted. Of course, I wanted to go home, but I felt I'd better ask Rachel's opinion. "Rachel, should we go home or do you want to go upstairs to 8th floor?" "I wanna go upstairs." DRAT!!!! But, you know she's one hurting unit if she's asking to be put in the hospital. She knows the drill. She knows what the hospital means. She knows what this is all about and the reality of it all. The ER doc said, "Oh, that just breaks my heart." Join the crowd.

So, we were admitted this morning and have set up house at Children's Hilton. I have to happily admit that it has been 10 months since we've been inpatient, so that's really great! But here we are, and I think we've finally got Rachel's pain under control. She's on a morphine drip, she'll be getting a massage in the morning for her very stiff/tight muscles in her neck and shoulders from being stiff from the pain, and she's getting antibiotics for what we're assuming will be a bacterial infection. Rachel's fever finally broke around 5:30 this afternoon and she's actually been human since then. Before that she was just horribly miserable. She just moaned and cried, she was glassy eyed, she wanted it completely dark and quiet, and she just wanted to be held and sleep. After the fever broke she was actually communicative, her eyes weren't glassy, and she watched a movie and played a game with me. She's currently sound asleep ... which is where I should be. I only got about 3 hours of sleep last night and one fitful nap today in the hospital. I feel myself fading fast.

We don't know how long we'll be here. We're going to have to get Rachel off of the morphine drip first and I don't see her pain going away until that packing comes out. Being that the packing is self-discintegrating (that doesn't look spelled correctly either, but as I said, I don't have a dictionary ... not something I carry in the suitcase) so I don't know how long that's going to take to do it's thing. I'm kinda hoping she'll just have a big sneeze tomorrow and out it will come! :-) All that packing has to be causing pressure in her nasal cavity and I'm comparing it to when your sinuses are full and how they hurt and your eyes hurt and your forehead hurts and your temples ... migrain kinda thing. We don't want her in pain. If it means staying here a couple of days, that's what we'll do. My uncle has had this procedure done and he said the pain was horrible. I'm not impressed that we were sent home with only Tylenol with Codeine, that's for sure. I'm sure we'll also be going home on an antibiotic, too. For now, we'll ride the tide. We're also skipping tomorrow's chemo dose.

Specific Prayers:
~That Rachel's pain be handled adequately.
~That Rachel remain fever-free.
~That Rachel not have a bacterial infection.
~That Rachel's nose not bleed anymore.
~That Rachel's upcoming scans show drastic shrinkage in all tumors and no new tumor growth.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Monday, February 5, 2007 10:36 AM CST

We are officially "old". We are now parents of a teenager. I remember when Blake was in Kindergarten and looking at the people who had teenagers and thinking, "They're older." Guess what? We're older! Blake said to me yesterday, "You'll never be too old for me, Mom." Gotta LOVE that kid!!! Hmmmmm ... wonder what he wants???? Tee hee!!!

Blake said his weekend was AWESOME and with both sets of grandparents taking him out this week, I'm thinking this week's going to be GREAT, too! He's pretty excited. I would have to agree with Blake as far as how the weekend went. Hey, we didn't have to go to the hospital!!! Rachel's doctor did mention on Friday to put Vaseline in her nose or use a saline nasal spray to keep it from getting dry and cracking and bleeding and possibly help out the nosebleed situation but Rachel won't have anything to do with that. There will be NOTHING up her nose, thank you very much!! We'll keep trying. We're not sure if that's the initial culprit for the nosebleeds, but we're willing to try anything! If I remember tonight, I think we'll start the vaporizer in her room and see if that helps at all. Obviously the low platelets is what's keeping it bleeding but we're trying to stop the initial bleeding if we can.

Rachel is having some issues with her feet. The inside of her heels are very sore and seem to have a hard area on them but it really doesn't look like a callous. It's obviously from her braces and I've got a call into her orthopedist to see if he can shed any light on it. She's been wearing thinner socks so I don't know if that's the culprit or not (like they're rubbing more). I did go by some of those Merino Wool socks today that were recommended so we'll see if those work at all for her. They are thicker which would mean more cushion, I just hope they aren't too warm. Guess we'll find out. Wish they came in prettier colors. Black with gray stripes is just so ... boyish. Oh, well. They're just socks.

Rachel has chemotherapy tomorrow. Home health care is coming out after school. It will be interesting to see what her counts are. Would be nice to have a nice quiet week away from the hospital.

Specific Prayers:
~That Rachel's platelets stay above 50,000.
~That Rachel's ANC stay above 1,000.
~That Rachel remain fever-free.
~That Rachel's upcoming scans show drastic reduction in size of all her tumors.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, February 1, 2007 10:00 AM CST

Rachel started physical therapy on Tuesday. Her therapist, too, was disappointed and elated at the same time about Rachel's range of motion. Happy that it was where it's at, yet disappointed that the right foot didn't come just a tad bit farther. Rachel now has "homework" for physical therapy. She has to stick her feet into a big tub of unpopped popcorn or noodles and find things such as balls, dice, etc. in the tub with her feet. She also has to do some types of specific walking and she has to do it so many times every day. I'm sure the exercises will get harder as time goes on. Rachel was very excited to see her therapist again. Too bad they dislike one another so much! Tee hee!!

Rachel's counts WERE good enough to have chemo! YIPPEE!!! Barely ... but they were there. So, she got chemo on Tuesday but they did lower the dosage of one of them in hopes that her platelets won't take such a hit. It's probably going to take a while to stabilize that out because yesterday morning before school she had a very small bloody nose but it stopped right away and she went to school. Late morning I received a phone call from the nurse saying that Rachel had had a bloody nose but that it had quit. Oh, good! Early afternoon I got another call that she had another bloody nose and was sneezing out clots--that's always so fun. But, it once again stopped. I called a while after that to see how she was doing and was told there were no problems. I bet it wasn't 10-15 minutes after that when I got another phone call that she had another bloody nose. I went to school and got her. By this time I had already talked to Rachel's nurse and we decided that I would try a medication for stopping nosebleeds that I have at home (her doctor told me to have it on hand just for this reason) but if that didn't work that Rachel would have to come in and get some platelets.

When I got Rachel home, I put the powder on an applicator and gently put it barely up into her nose when Rachel's eyes bugged out and she started screaming. Guess the stuff stings ... a LOT. Rachel was NOT impressed and sat there screaming and crying. So now I'm digging in her nose trying to get the powder out of her nose as she's screaming. What a pair we made. I finally got it all out and she said the stinging had stopped. Well, that may be but your nose is still bleeding. She continued to wipe her nose and continued to have large clots exit her body through her nose. I called the doctor.

We ended up at the hospital and her nose continued to bleed. Nothing drastic but very annoying. Finally her nose stopped bleeding close to the platelets being finished. On the way home, her nose started bleeding again. What??? She just kept the Puffs box close. As a matter of fact, she made me go out to the truck while we were at the hospital and get the Puffs because the hospital kleenexes are like sand paper ... literally. She ended up falling asleep on the drive home and when we got home at 10:30 last night, we had quite the mess. She had blood all over her face and coat. Mark and I got her cleaned up and her nose seemed to be done bleeding. I stayed up for a while to do her soiled laundry and to keep an eye on her. I just didn't trust that nose of hers. Over the next hour-and-a-half I kept peeking in to make sure it wasn't bleeding. It never did. Whew!

This morning she was up early (guess she slept fast) and was raring to go to school. Works for me! I haven't had a phone call yet ...

Tomorrow Rachel will miss the entire day of school because she has her neuro/psych evaluation. The test lasts from 9-3. Poor kid! After that she has chemo. It's going to be a long day for her. Not much better for me as I get to sit and wait. I don't get to be a part of that so I see a lot of quilting getting done in the waiting room! While she's at chemo, Rachel's orthopedist will come and fit her night braces, too. She got the molds made last week and this week they should be ready. Like I said ... big day.

This weekend is Blake's birthday (Super Bowl Sunday) so there will be activities around here concerning that. He's SO excited because he will now be leaving childhood behind and enter the exciting teenage world. I'm not sure if I should bite my nails or roll my eyes!! Tee hee!! It's hard to believe he's grown up so fast. When this whole journey began, he was only eight--the same age as Lance. Hard to believe. It doesn't seem like yesterday that he was born but it sure doesn't seem like thirteen years ago. Five years from now he'll be headed off to college. That makes my shoulders slump. Maybe I'll be ready for that by then though! :-) Now I'll just continue listening to the count-down until driving! Three years, three days, four hours, and ten seconds ... and counting.

Specific Prayers:
~That Rachel's platelets remain above 50,000.
~That Rachel's bloody noses cease.
~That Rachel's ANC remain above 1,000.
~That Rachel's upcoming scans show drastic improvement in all her tumors and no new areas.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Monday, January 29, 2007 9:21 AM CST

The kids didn't have school on Friday so we took off to see relatives. We spent the night on Friday in Sioux Falls, SD, with one of Jodi's cousins and we spent Saturday night in Worthington, MN, with one of Jodi's aunt & uncles. We enjoyed seeing both of Jodi's grandmothers and so many other aunts and uncles and cousins and cousin's kids. Even got to see (and hold) a couple of babies--one of them BRAND new!!! Oh, too fun. There never does seem to be enough time and you never do get to see everyone, though, when you're doing it on a one-at-a-time basis.

Rachel's right ankle is bothering her quite a bit. She starts PT tomorrow so it will be interesting to get her therapist's point of view on it. She limps quite a bit whenever her brace is off. We've been experimenting with different socks for her braces, as she likes the longer socks that fold over the top but I've been having problems finding them in her size. I've looked in the girls', boys', and sporting goods departments. The soccer socks are nice and long, but they're VERY hot and she doesn't like that. The plastic braces don't let her feet breath. Can we say sweaty and stinky??? So, the search continues for tall, light-weight socks in pee-wee sizes!

Rachel starts another round of chemo tomorrow if her platelets (and the rest of her counts) are good enough. I'm more than a little worried about that. She had another bloody nose this morning with a kleenex FULL of stuff from her nose (you don't really want to know about the clots and fun stuff, do you??). I'm kinda assuming her platelets are below the level needed for chemo. Guess we'll know for sure tomorrow. Please pray they are.

Specific Prayers:
~That Rachel's platelets be high enough for chemotherapy tomorrow.
~That Rachel's upcoming scans show a decrease in size in all of her tumors.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Thursday, January 25, 2007 10:58 PM CST

Another day "wasted" at the hospital. Rachel's platelets were even lower today than they were Saturday. She only had 6,000 of them. That's LOW!!!

Rachel is wearing a huge grin and Mom and Dad have that "well, that's the way it is" look. Rachel's done with casting. Her ankle did not move any farther and is the same as it was last week which was the same as the week before. Bummer. But, it's still a heck of a lot better than it was six weeks ago!! I actually saw her putting her HEEL first while walking with that foot. I haven't seen that in almost five years! She is wearing her orthodics now all day and all night. She gets to have them off for only two hours per day. She did get fitted today for night orthodics. Those have more of an angle to them. We don't want her losing ANY range that we've gained so if she sleeps in braces that have a bigger angle, she will hopefully keep that range. She also starts PT on Tuesday.

Chemotherapy starts over again on Tuesday, too. I found out today that both chemos she's on are count dependent. Although her white count and ANC are good (they never dropped below 1000--answered prayer) her platelets could be a trouble spot. If the level they want her at can't be a transfused number, then I see chemo being delayed quite a bit until she's making them herself and keeping them. See what happens.

Rachel's tutoring is going very well and she absolutely LOVES it!!! She's just floating because she's having success. She actually was able to take a book that her tutor gave to her and read it to her classmates (her classroom teacher encourages them to bring books to read out loud). She was SO excited!! It's so great to see.

We're hoping for an enjoyable weekend without anything medical going on. Oh, by the way ... the tree is still up but there isn't a thing on it! All of the Christmas stuff is put away except the actual tree. I'm sure by the end of the weekend that will be gone, too. Almost hate to see it go ....

Specific Prayers:
~Thank the Lord that Rachel's WBC and ANC stayed above 1,000.
~Thank the Lord for Rachel's success with tutoring.
~That Rachel remain fever-free.
~That Rachel retain her range-of-motion in both feet.
~That Rachel's chemo not be delayed.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Wednesday, January 24, 2007 7:03 AM CST

Because we continue to have to deal with this Ewing's monster; because we continue to have to do treatment; because the expenses continue to mount as we travel along this road; a friend of ours has offered to do a fund raiser for Rachel. Please check out the above information.

Rachel started her tutoring this week. She's absolutely LOVING it!!! She's so eager to learn. She knows that she's behind. She knows that she's struggling. She knows. Her tutor (the teacher she had for Kindergarten) told me she's absolutely eating it up. We're so thankful that she's finally getting the help she needs.

Once again, though, if it hadn't been for us pushing for it and actually suggesting it in the first place, she still wouldn't be getting any extra help. I just don't get it. How is it that we set our kids up for failure? Because she has cancer she shouldn't learn like the other kids or be expected to learn? I know that there are programs out there, so how come she wasn't offered them? Or do we have to wait until they're SO far behind that it's used as a last resource? I don't know, but believe me I plan on finding out. I do feel like she was left to fall through the cracks on purpose because she might just be "too tired" to learn. I want to extend a HUGE thank you to Christine Jereczek for informing me about the Homebound program in the first place. If it wasn't for you, Christine, Rachel still wouldn't be getting the help she so desperately needs. THANK YOU!!! Big cyber hugs!!

It looks like we're actually going to make it without being up at the hospital until tomorrow when she will have both casting and a check-up with the doctor. The back of her heel has been bothering her (the one that's casted), so hopefully we'll be able to find out what that's about. She also had "one of those headaches" yesterday. She'll also be done with her IV antibiotics tomorrow. We aren't going to miss those!

Rachel is hoping that she'll be done with casting tomorrow. I'm actually hoping that she won't be because if she's done it's because her ankle didn't move anymore. If we get another cast it will be because her ankle DID move! I really could handle one more week of casting ... easy for me to say, I know. I can hardly wait to put her in the bathtub, though!!!!

Specific Prayers:
~Thank the Lord that Rachel enjoys her tutoring.
~Thank the Lord for Christine.
~That Rachel's range of motion in her right foot continue to increase to 15 and 20 degrees by tomorrow.
~That the new chemo be drastically shrinking all of her tumors.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Sunday, January 21, 2007 10:53 AM CST

My truck now knows that the only place it goes is to Children's Hospital and does so automatically! This past week has been crazy!

Sunday at Children's Hospital ER for fever.
Monday at Children's Hospital for antibiotics for infection.
Tuesday ... huh, we were home!! :-)
Wednesday at Children's Hospital for chemotherapy.
Thursday at Children's Hospital for casting.
Friday at Children's Hospital for a cast "fix".
Saturday at Children's Hospital for transfusions.

Ppppppttttt!!!! :-P I'm tired of being there!!

Friday morning, Rachel woke up complaining about her pinky toe being squished inside her cast and that it hurt. She was walking around sucking in her breath with every step. Hmmmm ... can't be having that. We headed up to Children's and they cut a hole where her toe is to give it some room. Then they put soft cotton over the hole and more fiberglass. Rachel was happy. If Rachel's happy, we're all happy! Tee hee!!

Saturday afternoon, a home healthcare nurse came out and drew labs and gave Rachel her chemo. A few hours later I got a conference call from the homecare lead nurse and the doctor on call. Oh, when that happens you KNOW things aren't good! Rachel's platelets were only 8,000 (a normal person's range is from 150,000 - 450,000 with the average being around 250,000). Pretty much, she needed a transfusion and she needed it RIGHT NOW. Go directly to the hospital (jail), do not pass Go, do not collect your $200. Go immediately and directly there. Yeah, okay, we get it. Her hemoglobin wasn't down to their transfusion level yet, (she was 8.3 and transfusion level it 7.0--although the hospital in New York transfuses at 8.0) but being that she was so pale and tired looking and since we were going in anyway, I asked that they tank her up. Also, her antibiotic levels in her blood were extremely high and they needed to figure something out with that.

So, up to the hospital we went. We got there about 6:00 pm and didn't leave until after midnight. Oh, yippee. We do officially live there, I fear.

The Christmas decorations have started coming down, but they are not even close to putting themselves back into all of the boxes. Heck, I'm still working on all of garland and lights and Christmas knick-knacks and haven't even started on the tree! The kids are thankful that it's still up. "It's so beautiful!" is Lance's comment. Mark, on the other hand, is being a gentleman and biting his tongue!!! I do get "the look" every once in a while when I turn the Christmas tree lights on. Tee hee!! Hey, I think it's beautiful, too!!! My thought is "Who cares if it's still up? Every time I look at it I think of Christmas and what Christmas is. Therefore, I think of Christ an awful lot. Not a bad thing!" Right? Maybe I should just leave it up until next year. Uh, no, cause then I'd have to figure out a way to dust the thing. No thank you!! Hopefully we'll get an entire day away from the hospital and the Christmas stuff we'll find it's away into the boxes that are expectantly waiting downstairs.

They changed Rachel's antibiotic to every 12 hours because of her levels!!! WOO HOO!!! Okay, I'M happy about that!! It also means that she doesn't have to have Mom showing up at school everyday and have a medicine ball attached to her for an hour during school. We're actually ALL happy about that! Home healthcare is coming out tomorrow night to draw levels again, so we'll see how that's working.

This week is Rachel's off-week from chemo to let her counts recover. We will still be in for a doctor visit and for casting this week, but being there twice will seem like a complete vacation! My cousin's baby is still in the NICU at Children's and I visit everytime that we're there. Needless to say, I saw them an awful lot this past week! As I continue to repeat to them everyday, "I love you and I love seeing you, but it wouldn't bother me a bit to not see you for a few days!" We all laugh in agreement.

Here's praying for an uneventful week full of SCHOOL and HOME!!!

Specific Prayers:
~That Rachel's counts climb quickly.
~That Rachel remain fever-free.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Thursday, January 18, 2007 4:43 PM CST

Rachel will be on antibiotics until next Thursday ... the every eight hour kind! UGH!! I told her doctor that I didn't like her. She laughed and shrugged her shoulders and said that didn't bother her one bit coming from me. I tried. Tee hee!! Her cultures came back as having a staph infection but the last cultures they drew have come back negative. That's a GOOD thing ... it means the medicine is doing it's job.

We had a small set-back with casting today. Her ankle is at the exact same range of motion that it was last week. She didn't gain a single degree. Bummer! If it is at the same place next week, she'll be done. The therapist said that if they get the same measurements for three weeks in a row, that's it. It's not going to go any farther. Her numbers right now are 10 & 16 and we want them to be 15 & 20. If her numbers do move the next week, we'll then go another week after that. Let's pray for 15 & 20 by next Thursday!!!

Rachel has been approved for the Homebound program through the school district and her Kindergarten teacher from last year is going to do the tutoring. We are thrilled!! Rachel's eyes absolutely lit up when I told her that Ms. Cummings was going to help her learn to read. "Can we start today?" was her question this morning. She's so eager! All of the paperwork isn't filled out and filed yet (still probably take two weeks--you know how that goes), but I know that the two of them will be meeting together before it's "official". We are super excited about this whole thing.

Rachel has chemo again on Saturday. She is awfully tired and seems extremely pale. Her counts were still half-way decent yesterday for a chemo-kid, although her platelets were pretty low. I was thinking that she'd need a blood transfusion but surprisingly her hemoglobin was 9.3. Yeah, that's low for "normal" but it's pretty good for being on chemo. Several people have commented on how pale she is and on how she looks tired. She's such a trooper, though.

Specific Prayers:
~That Rachel's right foot range-of-motion be at 15 & 20 next Thursday.
~That Rachel's counts not go below 1,000.
~That Rachel remain fever-free.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel receive the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!!

Tuesday, January 16, 2007 10:25 AM CST

Rachel has had a busy weekend. A home healthcare nurse came out to our home on Saturday to give Rachel chemotherapy. I wasn't home (I actually escaped for a day to a quilt retreat!) so the home healthcare nurse had to access Rachel's port and give her the drugs. I got home Saturday evening and very early Sunday morning, Rachel was crying because she didn't feel well. She had a fever and a headache. The fever was almost to the point of needing to make a phone call, but I decided to just give her Tylenol being that her head hurt and deal with it in the morning rather than at 3 AM. When Rachel got up, she felt fine--no fever, no headache, no nothing. GREAT! I didn't trust it, though. I showered and packed "just in case". Sure enough, I wasn't even done packing when Rachel started running a fever. Again, it wasn't high enough to make a phone call to the doctor, but she was freezing and couldn't get warm which can be a sign of a bacterial infection. I talked to the doctor who agreed that being that she was shivering, she needed to be seen.

Being that it was Sunday, we got to go sit in the Emergency Department. You know, I really don't like that! They don't understand chemo kids and it always takes FOREVER! Anyway, to make a long story short, they gave her Tylenol for her fever and headache, drew blood cultures, and gave her an antibiotic. When I saw her blood counts I just shook my head, looked at the doctor and said, "The kid's got a bacterial infection." "Oh, how do you know that?" "Because her white count is almost 7,000 and her ANC is 5,000. They've jumped UP by 2,000 and she just had chemo on Wednesday and yesterday. They shouldn't be going up but going down." "Oh," was the reply I got. Remember, they're ER docs ... not oncology. No matter what kind of doctor they were they would've sent us home and that's exactly where we went and where we wanted to be. I knew that I'd be getting a phone call in the morning, though.

Sure enough, Monday morning the first phone call of the day was Rachel's nurse saying that Rachel had a bacterial infection and that we had to get her in that morning for more antibiotics. So in we went. Rachel is currently on IV meds every 8 hours. That means Mom's sleep schedule is amended and that I have to go to school everyday to give drugs. Oh, YIPPEE!!! :-P We'll know within the next day or two exactly what kind of bacteria it is and whether we can go to a drug that is dosed every 12 hours or not. Sure would be nice!!

We are really beginning to see a trend with Rachel but we're not 100 percent sure of what to do about it. It seems that if anyone besides myself or Rachel's nurse in the clinic accesses her port, she gets a bacterial infection. We're not sure why. She also seems to get a baceterial infection 3/4 of the time that she gets scans. It's really strange. Even after the last scans she ran a fever that same night but not high enough to call the doctor and it ended up resolving itself. Her primary nurse mentioned the bacterial flora in the clinic and at our home and that maybe Rachel's body is used to that but not what's in the radiology department where she gets scans. Maybe there's a hand washing thing, too, being that home healthcare comes to our home. We're just not sure but it sure is disgusting that she gets them. I guess the nurse who was here on Saturday was wearing a lot of rings ... I'm going to check into that. I know that rings can hide bacteria.

Rachel's looking very pale even though her hemoglobin is pretty good for a chemo kid. I talked to the school nurse today about the fact that I'll be coming in to do meds and she even commented on how pale Rachel looked. We'll be back into the clinic tomorrow for more chemo and have her counts checked and we'll see where she's at. Thank you for your continued prayers.

Specific Prayers:
~That Rachel's counts not drop below 1000.
~That Rachel remain fever-free.
~That Rachel's bacterial infection subside.
~That Rachel be able to go to 12-hour drugs.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Thursday, January 11, 2007 9:32 PM CST

What a difference a day can make. We are doing cartwheels because Rachel has lost weight!!! YIPPEE!!! Our underweight child has lost weight and we're doing the Happy Dance!!! HUH????? Have I completely lost my mind???? We're assuming Rachel has lost approximately a pound-and-a-half. That's about what a cast weighs, right??? :-)

YES!!! She's out of her left cast!!! She got to go home today with just her right foot casted and her left foot is in it's brace inside a shoe!! WOO HOO!!! Rachel just beamed and beamed and beamed when she heard that it wasn't going to be recasted. She's having so much fun showing everyone her new shoe. I went and bought a new pair of shoes that would fit her braces today. You should've seen me standing there fitting a brace into different shoes with no child to be seen anywhere. Kinda funny! When Rachel pulled them out of the bag this afternoon on our way up to the hospital she exclaimed, "They're PRETTY!" They are white with a pink stripe and white and pink flowers and Hello Kitty on them. Her therapist took one look at them and said, "Those are pretty shoes!" I laughed. I guess the shoes are "pretty"!

Now Mom is just a geek because after we took her casts off and the therapist measured her, I just kept asking her to pull her toes back. She'd giggle and do it. It's something we haven't seen for so long that I just had to see her do it over and over and over again! She's able to pull her left foot right back there and her right foot is REALLY coming!! As a matter of fact, the therapist thinks it'll be two more weeks for the right foot and then be done! We actually scheduled her PT appointment today for the end of January. Rachel (and Mommy and Daddy) are just thrilled!!! Tonight she was walking around without the brace (she's allowed to for a maximum of two hours per day) and she would just stop and pull her toes up. It was absolutely amazing to watch. Then she'd just grin from ear to ear. She even climbed the steps! Like I said, I just sat there and grinned like a geek and had her doing it over and over. Yeah, we're wierd. We are thrilled with the small things in life. This experience has defineately taught us that.

Rachel continued to have an upset tummy this morning, but the medicine is handling it very well. Her doctor figured it would last about 24 hours, and that was it exactly. She hasn't needed any nausea medicine since before noon today. That's GREAT!

We have gotten the gears turning on getting Rachel's status as Homebound/Part-time at school. What this means is that when she's feeling good she can be in school, but being that she has missed so much and that the outlook is for her to continue to miss, she will be able to get tutoring at home. This is good for Rachel and good for the school as she gets the help she needs and the school district still gets to count her as a student for funding. We're really hoping that with the one-on-one tutoring (about 5 hours per week) that she will catch right up to her class. I'm meeting with her teacher and the principal tomorrow to cover some more ground with it. Would be great if we could get this into place SOON!!! Her reading homework is quite frustrating for her as it's above her level at this time. It will be nice to get rid of that frustration.

Homecare nursing is going to come out on Saturday and give Rachel her chemo ... which we're thrilled with! Being that it's just a quick "push" (meaning it's like a shot into her port rather than a long drip), it's an easy chemo to give. She's had it before, too, so we know that she doesn't react to it. If homecare can come out on days 4 and 11, that will obviously save us two trips into the clinic and will give Rachel two more days in school every round of chemo. That would be great! As it is right now, I'm pulling her from school twice a week. If you add in another day for the second chemo, that would become three times per week. I think twice a week is more than plenty!! I have never quite understood though why the medical insurance doesn't cover homecare as well as they do if you are actually in the hospital. They aren't billed as much money as when you're in the clinic or hospital, yet the insurance company doesn't cover as much. Go figure. It's worth it to be home or in school, though.

Blake had me edit a paper today that he's working on for one of his classes. I read the title: An Unexpected Thing In An Unexpected Place. Hmmmmmmmmmmmmmm ... interesting. I read the first sentence and caught my breath. "It was the summer of 2002." That was when Rachel was diagnosed. Sure enough, his paper was about his sister's diagnosis. It was quite interesting to read his "take" on it. Although part of it was made up (more for drama and so that he had a bigger part in it), even those parts were based on truth. His paper says that he asked me what cancer was and my answer was, "It is a disease the many people have died from and your sister may have to go to the hospital a lot". I know I didn't say that. But, in a round-about fashion, I suppose it sums up our long conversation into one sentence. Makes me shake my head. It's not a false statement. Then, a giggle erupted from my lips when I read, "Now my mom knows more about medical stuff than our whole family put together and even the doctor's it might seem". Shhhhhhh ... don't tell the doctors because Mom still lets them pretend they know something! Oh, too funny!!!! And the one sentence I can't help but re-read over and over and over again: "Even with all of this, I know she will make it--after all she is my sister." I hope he knows something. And with that, all of God's people said AMEN!!

It's been a happy day and we're looking forward to an uneventful weekend!! Fever-free is the word of the week right now!

Specific Prayers:
~Thank the Lord that Rachel's left foot is at it's proper range of motion.
~That Rachel maintain her range of motion in her left foot.
~That Rachel's ANC not drop below 1,000.
~That Rachel not need any red blood or platelet transfusions.
~That Rachel remain fever-free!
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Wednesday, January 10, 2007 4:55 PM CST

Rachel had her first dose of the new chemo today. Everything went pretty uneventfully. Thank you, God. I guess some kids do get allergic reactions to this drug and they have to give it in very small doses over a long period of time ... like six hours. Hopefully Rachel won't develop this.

Rachel has told me that her tummy doesn't feel good, so I gave her some more anti-nausea medication. They gave her a dose before the chemo and they weren't sure that just the one medicine would hold her and thought that maybe she'd need another one, too. She walked out of there feeling fine, much to her doctor's surprise. The drug they gave her lasted the length it was supposed to (four hours) when she started complaining. I'm thinking I'll just fudge that by about 30 minutes (we're actually "allowed" to fudge by an hour) so that her tummy doesn't start to hurt next time.

We're not 100ure if she's going to lose her hair or not. The doctor hasn't seen this drug with the combo that we're doing it with, only with other drugs that DO make you lose your hair. So, there's a possibility that she won't. The doc said her hair may just thin. It's already thin ...

We're back onto a 21-day schedule. She gets chemo on days 1,4,8 & 11. She gets an oral drug on days 2 through 19. Her doctor is hoping that her counts won't drop too bad, but she's thinking they probably will. We're not going to give Rachel any shots to try and rapidly produce white cells this first time so that we know exactly what the drugs will do to her. If her counts bottom out, we will defineately start up the shots. Oh, she's going to love that. It's not the poke that's bad (it's sub-q) it's that the serum burns when it's injected. I've talked to teenagers who say that it REALLY burns. When she used to get it a couple of years ago she would cry and cry and cry. Fun, fun.

Jodi's cousin's daughter, Peyton, is in the neonatal intensive care unit (NICU) at Children's where Rachel is treated. Rachel REALLY wanted to see baby Peyton today (Mommy gets to see her so why shouldn't she???). Peyton's mommy said that she could (which got a smile that lit up Rachel's entire face) but the "policy" for the NICU right now is no children except siblings due to it being RSV season. Rachel was not happy. She sat and scowled at the people who told her she couldn't (we know them due to another of Jodi's cousins working in the NICU). "Are you mad at me, Rachel?" one of the gals that Rachel knows asked her. Rachel wouldn't even talk to her. If it wasn't so disappointing for her it would've been funny. Okay, for us adults it was STILL funny!

They decided to put Peyton in a bassinet (she's not hooked up to oxygen or anything funky) and rolled her to the window where Peyton's mommy then held her up to the window so Rachel could see her. Rachel was happier but it still wasn't what she wanted. I told her that once Peyton got home we would go see her and then she could even hold her which she couldn't do in the hospital. That brought a smile to that grumpy face! Peyton could use your prayers, too. Her website is: www.caringbridge.org/visit/peytongould

We continue to pray for Rachel's miracle. We pray that she gets it soon. I have to admit, I'm tired of this. No, I'm exhausted. Rachel's five year anniversary of dealing with this is looming right around the corner. Five years. Good thing we didn't know that when she was first diagnosed. I would've absolutely flipped out. I didn't know how I was going to put my life on hold for one year while we did the initial treatment. I didn't know how our family was going to handle a year of treatment. I did't know how anyone dealt with it for that long. A year is along time. And here we are, almost five years later, still dealing with it. On one hand, I'm so thankful that we're still dealing with it because I know too many parents who would give anything to be in our shoes because they've had to bury their child. On the other hand, I want to be in the shoes of those parents whose children are long-term survivors. One does tend to ask, "How much longer?" If the answer is, "She's going to die," then I guess I can do this forever. If the answer is, "She's going to survive," I'm really ready to get on with it.

Honestly, I'm letting myself feel the exhaustion, the disappointment, the frustration, the anger, and all of those other emotionally draining feelings this time around. I don't want to be cheered up, I don't want to be told to not give up, I don't want to hear to not give up hope or faith. None of those things are going to happen--giving up isn't an option. I'm allowed to feel dejected once in a while. I'm having a pity party even though it's not about me. My own pity party isn't even about me--how sad is that? It's about the entire situation. I just need to hear that things are moving in the right direction and no one can tell me that--not yet, at least. And so, we pray. And pray. And pray. I hope you're praying with us.

Specific Prayers:
~That Rachel's counts not drop very low with this chemo.
~That Rachel remain fever-free.
~That Rachel feel well on this chemo.
~That Rachel not need the GCSF shots.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

AN EARTHLY CURE FROM HEAVEN IN 2007!!!

Monday, January 8, 2007 11:57 AM CST

We have chosen Rachel's new chemotherapy treatment. It will be starting either Tuesday or Wednesday. It's also probably not going to leave her feeling as good as she has been and she's probably going to lose her hair again.

Our choices just keep getting smaller and smaller and smaller. It tends to be a case of choosing the best from the worst. It's frustrating, it's disheartening, it's maddening. We're hoping that this doesn't mean that she's going to be back in the hospital more, but we don't know.

Although I'm at peace with the decisions that have been made, I do feel beaten up. The words "no longer going for remission", "just be concerned at this point about quality of life", "there is no cure", "there comes a time when you just have to stop" ring through my ears and make me angry. We DON'T want to hear it. We know perfectly well the seriousness of Rachel's situation. We know perfectly well that she's living with a large amount of tumor burden. We know perfectly well that she can't do this forever. We know perfectly well the reality of her situation. We also know that no one on this earth can tell us where Rachel will be in a year. No one. Not one person. Nada. Only God knows. She's defied odds so many times. For there to be odds someone has to have made it against it all. Why not Rachel? Why not?

Give up? HELL NO! Not yet. Not until we feel led to do so by God and by Rachel. Rachel's not ready to go live with Jesus and we certainly haven't been told that it's time to stop. I'm astounded that some people would even think that. To look at her she's a picture of health ... just don't look at her scans!

We can not give up hope! Too often we've been painted the picture of doom and gloom and LOOK AT HER!!! But, the reality is that Rachel is not in a good place. To think otherwise would be delusional. She needs your prayers desperately. If we don't get a handle on these tumors soon, well ... it's possible we never will. We can't kid ourselves about her situation just because she looks so darn good. Looking good and feeling good don't always tell the story of what's going on on the inside.

We do not yet know what the chemo schedule will be. We're not 100ositive on how she'll handle it or what side effects she's going to encounter. We just know that we've come to a T in the road and we've made our turn. Hopefully it will lead us down the road to where we ultimately want to be ... and the radiologist pronounced "clear scans". What a miracle that would be!!

Specific Prayers:
~That Rachel tolerate this new chemotherapy well.
~That Rachel's counts don't take a big hit with the new chemotherapy.
~Rachel would like to keep her hair.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth!!

AN EARLTHY CURE FROM HEAVEN IN 2007!!!

Friday, January 5, 2007 6:59 AM CST

We had a bright spot in our week yesterday. Rachel made it through casting without having to have any casts redone after they put the new ones on ... that's a FIRST! Also, we got told to bring Rachel's left brace next week because the therapist feels that Rachel's left foot will be at the goal of 20 degrees! WOO HOO!!! They take two different measurements of the ankle and the goal is to have both measurements be at least 20 degrees. Rachel's left foot was measuring 15 & 20 yesterday!! It was so exciting! Rachel's right foot took a nice jump, too! When we first started out, Rachel's right foot measurements were 0 & 2 (again, desired is 20). The first week there was no change and she remained at 0 & 2. The second week she went to 2 & 5 and yesterday she measured at 5 & 10! We're seeing progress.

When Rachel was standing on the floor yesterday without her casts on, she actually stayed flat-footed and never went up on her toes. That's huge! She didn't want to walk without her casts, though. She just stood there and wobbled. While she wobbled she was giggling at herself. I'm sure those muscles are quite week from not being used for the past three weeks. While she wobbled I watched her stay flat-footed and bend her ankles!! It was a sight I never expected to see ... it was something that she wasn't physically able to do just a few weeks ago. So, although Rachel was wobbly, Mommy was smiling!

There has not been a final decision made yet as to a new treatment. Lots of things are being thrown around. It's also taken longer to get responses from some of the other doctors that Rachel's doctor has contacted due to the holiday. Hopefully within a couple of days we will know what we're going to do.

Specific Prayers:
~For discernment for Mark, Jodi, and Dr. Bendel in the decision on new treatment for Rachel.
~That Rachel not catch any of the crud going around.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

AN EARTHLY CURE FROM HEAVEN IN 2007!!

Monday, January 1, 2007 10:42 PM CST

It snowed yesterday. We had a brown Christmas but a white New Year's Eve. At midnight, as I stood looking outside at the glistening, untouched snow looking magical as it stretched out over the fields I wondered how long this road would be. Would it, too, stretch endlessly as the snow seemed to? At the end would there be glistening diamonds under a full moon? Would our gem be an earthly cure?

I held Rachel in my arms, her casts hugged around my waist. She laid her downy soft cheek on mine and hugged me as if there would never be anymore hugs. She whispered, "I love you, Mommy." My heart caught in my throat. I looked to the heavens and quickly blinked away the tears. Are my hugs numbered?

Mark and Blake set off the fireworks ... our family New Year's tradition. Lance, Rachel, and I watched them from the comfort of our home. We "ooooed" and "aaawwwwed" at the spectacular color and the brilliant display of light over the new snow. It was beautiful. It was humbling. The silence afterward was deafening and roared in my ears. Will she see another show such as this?

Now that the fireworks were over, Rachel struggled free from my arms having no idea about the raging war in my heart. She took off with her brother as I lagged behind in the darkness with my thoughts swirling in a head full of notions. So many different thoughts. Which will be the final one?

I join the others and pour a toast of Mt. Dew (can you believe THAT one???) in champagne glasses. We toast to 2007. We toast the fireworks. The kids love to hear the clear bell ring of the glasses as they chink together. But isn't there something about everytime a bell rings another angel gets it's wings? Not sure I particularly like that sound anymore. Thank goodness that's only a Hollywood rendition. Silently Mark and I look at each other and we know one another's thoughts. They are both of Rachel. Will our family be doing this next year with all five of us in attendance?

They are sad questions. They are horrible thoughts. Yet, we go there. We are faced with that reality all too often. There are no guarantees anywhere in this life. And with a disease such as this, well ... we're lucky she's here now. We are so thankful for that.

As the research continues, it builds a fire and makes me angry. I'm angry that in the past ten years only ONE new drug has been developed for pediatric cancer. Yes, you read that right ... ONE new drug. Everything else is hand-me-downs from adult's cancers. The last I checked Ewing's sarcoma wasn't an adult cancer. Yes, some adults do get it and many are treated by pediatric doctors. Guess where that leaves the drug research though? ONE new drug in the past ten years. Trust me, it wasn't for Ewing's.

Our choices are limited. Our decisions are tough. And a little girl looks up at me with big, blue eyes and Einstein hair and says, "We have to change chemos again? Why?" I didn't want to be me right then. I didn't want to have to answer that question.

Lord, give us the strength to walk this road as long as You ask us to. Give us the courage to come face-to-face with whatever challenges leap out at us. Give us the endurance for a continued long-haul. Give us the wisdom to choose the correct treatment. Give us the hope that keeps us positive and walking with You. Give us the earthly cure we so desire. Give us peace in whatever Your plan is.

Specific Prayers:
~For discernment for Mark, Jodi, and Dr. Bendel to choose the treatment that will lead to Rachel's cure.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel receive her miracle from heaven in 2007!!

AN EARLTHY CURE FROM HEAVEN IN 2007!!!

Friday, December 29, 2006 4:09 PM CST

We go into the New Year knowing full well that Rachel didn't get the ultimate miracle in 2006. Rachel's scans show everything that we did not want. Everything has grown except the spot that we radiated and there's even another new growth on her liver. Nothing is drastic as "mild progression" is the term used but it's still growth.

We now go back to the drawing board, back to start, back to the beginning without passing GO and we're not allowed to collect our $200 either. We're disheartened, disappointed, and frustrated. Now what??? We don't know. Back to the researching.

Lord, what are you planning? What do you have in store for Rachel? Where is this bumpy, winding road leading? We're tired, yet we'll trod on. We're frustrated, yet we'll continue to fight. We're stubborn, so we won't stop. Not until you tell us to. Where do we go from here, Lord? Lead the way ...

Specific Prayers:
~For guidance and discernment for Mark, Jodi, and Dr. Bendel as they research and decide on a new treatment plan for Rachel.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

Tuesday, December 26, 2006 9:08 AM CST

Another celebration of our Lord's blessed birth has passed. Where does the time go? As we were driving around last night looking at all of the beatiful displays of Christmas lights I was thinking back to how a few months ago I was thinking that Christmas will be here before we know it ... and here it is. A wise man (my father) once told me that the older I got the faster time went. At the age of teenager-hood, that really didn't seem to get me to graduation any faster but I did always remember what he said. I'm certain that in some point of my mothering career, I will be found quoting those same words to my children because they are very true.

So now the heroic efforts of getting the house back in order after Christmas begins. All of the gifts must find homes in closets, cupboards, and drawers. All of the china, crystal, and silverware from entertaining for two days must find their way back in the hutch. All of the leftover candy, cookies, and other food must be either thrown or put away. Yes, clean-up is such fun. No one has yet invented a machine that will do that for us!

I'm very glad that I rescheduled Rachel's chemo so that we have today at home. Tomorrow Rachel has a PET scan but I won't have the results of that until Friday. Thursday Rachel has chemo and gets her casts redone. Friday Rachel has a MRI/CT scan and an appointment with her oncologist so that we can get results from all of the scans. It's going to be a busy week.

At her last recasting on Thursday, Rachel's left foot (the one that has the most range of motion of the two) actually measured almost "normal"!! WOO HOO!!! But, alas, the right foot--the one we are most concerned about, didn't change at all. Because of the complaints Rachel had been having last week, the therapist was not aggressive with moving her ankle very far. She chose to move it only about a degree or two and that was it. Of course, nothing can be smooth with Rachel and the right foot was causing her tears and had to be recasted twice that day. She then said that it was fine but on our way home she started crying about it. Oh, great. It can be absolutely inferiating!! I chose to continue homeward. I told her that if it was still bothering her on Friday that I would call the therapist but that we couldn't turn around and go get it redone AGAIN because the therapist had already gone home--all true. She seemed to forget about it that evening and I was breathing a sigh of relief.

The next morning before school, Rachel walked up to me and said, "My right foot is still bothering me." "What's wrong with it, Rachel?" I asked as my heart sank into my shoes. I didn't have time today to go get recasted, but would do it, of course, if it was necessary. "It's short," came the reply. "It's WHAT?" "It's short." "Sharp? It's sharp?" I'm thinking oh, great. If there's something sharp in there we've GOT to get it off and get it redone. "No, it's short." "It's SHORT?" "Yes." "What's short?" "Inside. It's short inside." Okay, now WHAT in the world does THAT mean????? It's short inside. "Can you live with it, Rachel?" "No. You said you would call." That I did. "Okay. You go to school and I'll call. If anything is going to happen I'll come get you from school." "Okay." And with that, she went to school.

I half expected to get a phone call from the school nurse at some point during the day. I did call the therapist who was just as puzzled as I was about the short thing. The therapist was totally booked for the day and did not have an opening to get Rachel in to recast. We could always go to the emergency room and get the cast taken off, but there would be no one available to put another cast back on until our next Thursday appointment. Hmmmmmmmmm ... I'm thinking Rachel REALLY needs to deal with this "shortness".

I went to school for Lance's "Winter" Party--you can't even breath the word Christmas, you know (makes me want to home school even more!), without ever having heard from the school nurse!! YIPPEE!!! As I was picking Rachel up from her classroom she wanted to know if I had called. "Yes, I called. Lori said that we could go to the emergency room and get it taken off if it really bothered you, but you wouldn't be able to get another cast put back on until next Thursday because they can't get you in until our scheduled time." "Oh," was the reply I got. I haven't heard one more word about that cast. Not ONE!!! It boggles my mind. I'm really not sure what to make of that. How do you, at six years old, go from complaining about something that "hurts" or is "short" to absolutely not one word about it? Strange.

Rachel does seem to toe-walk more in these casts. Hard to believe she's even able to at all. I've heard no complaints of ankles hurting at all this week, though. She's needed no Tylenol at all where last week she was practically living on it. Hope that means that there's been some stretching happening!

Rachel's stools have changed over the past few weeks, and not for the better. These changed stools have also caused her bottom to become raw. Poor thing. And with casts on, she can't sit in the tub and soak it, either. We've been keeping her bottom clean by having her lay on the counter and using a turkey baster. It's pretty sad to hear her ask for the turkey baster because her bottom hurts so bad. We're also using a salve from the hospital that she likes a lot and works well, but as soon as we get her bottom back to normal she has more chemo and she's back to being raw again. We're not getting a good handle on this yet.

All three kids are going to go to a movie with their grandmother today, so I'd better get them moving ... two are up but not dressed and the other is still in bed. Hope your Christmas was wonderful and that you were able to take time to reflect on what the birth of one baby over 2000 years ago means for us today.

Specific Prayers:
~That Rachel's scans show drastic shrinkage in all areas of tumor and that there be no new tumors.
~That Rachel have no long-term side effects from chemotherapy, radiation, or surgery.
~That 2007 be the year that Rachel gets her miracle from heaven.

STILL PRAYING FOR A FIX IN 2006!!!!

Tuesday, December 19, 2006 9:58 PM CST

Rachel is finding that being on her feet too much causes them to hurt. That's quite frustrating to her. She's been taking Tylenol everyday now because she's complaining about the back of her ankles. We went in today for chemo and her physical therapist came in to chat about the pain. She feels that Rachel's ankles are getting stretched and then they probably ache after she's been on them for a period of time. They are only at 90 degrees right now (feet flat on the floor), but being that she likes to walk on her toes, she's not used to that. Her therapist was going to talk to the therapist that does the casting and tell her about the pain so that she doesn't get aggressive with the adjustment on Thursday when we change the casts. I'm glad that I'm still thinking up to 12 weeks of this because if they can only move her a degree or two each time because she's so sensitive, it's going to take longer than they originally thought.

You know what's really funny? Rachel still toe walks in her casts!!! Not all the time, mind you, but quite a bit. It's the strangest thing to watch. That will get harder and harder to do, I imagine, as the angle of her ankle increases. She will then have to learn to walk with her weight over her heels rather than over her toes. I have heard that the positioning of the weight is one of the hardest things for these kids to overcome.

Rachel is ready to have the casts off and was not happy with me when she finally understood that not only do these casts come off on Thursday but new ones get put back on. I'm hoping we'll have some time to run around without them on and to wash what I'm assuming will be rather stinky feet on Thursday!

Rachel is riding the bus to and from school. They have a wheel chair at school and decided that someone could meet the bus each morning and wheel her to class because her bus is at the end of the line and her classroom is in the total opposite direction from it. After school she gets wheeled back out to the bus. Rachel thinks it's great! I guess her bus driver was a big promoter of that one. Thanks, Ron!

It was rather cute today when I went to pick her up from school for chemotherapy. I went into the school nurse's office to sign Rachel out and then the nurse wanted to know if I wanted to go help her or if she should go. I said that I would and took off for Rachel's classroom. As I rounded the corner I could see down the long hallway and saw Rachel, her teacher and another little boy by Rachel's locker. Rachel was sitting on the teacher's chair (which has wheels) and the little boy was going to push her up to the nurse's office. I got to her locker and could see that Rachel's classmate was so proud so I felt I couldn't take his job away from him. He pushed her all the way to the front door with Rachel grinning from ear-to-ear the entire way. What a hoot!! Her classmates take such good care of her. I'm very proud of each of them for how they include her and help her.

Rachel's counts were very good today (compared to what they have been on some chemo days) and there was no question as to whether or not she should have chemo. Next week is a big week as we were scheduled to be up at Children's four days. She has chemo on Tuesday, a PET scan on Wednesday, casting on Thursday, and and MRI/CT scan on Friday. Today we decided to take our chances and moved Rachel's chemo to Thursday. I say that because we could be kicking ourselves if her counts aren't high enough the following Tuesday because we'll be shortening that week by two days. Hopefully not. It just would be nice if Rachel got to enjoy at least a DAY of her Christmas vacation!!!

I'm finding it hard to believe that next week is scan time already. It just seemed to far out there when we scheduled it and BOOM! here it is. I'm apprehensive, I'm scared, I'm calm, I'm nervous, I've got a "no big deal" attitude, and everything in between. It's kinda strange. There is no word for it. I generally don't get worked up about scans, but for some reason I'm a bit jumpy about these. I'm trying to forget about it, truthfully, and just focus on Christmas. I know that next week our lives could change ... again.

Change ... it seems to be the word that best describes our lives. Everything has changed. Nothing is the same. Nothing will ever be the way it was ... ever. The people we were four years ago no longer exist. Heck, some of the people that were in our lives four years ago no longer exist. The clay continues to be molded and remolded. The potter continues to form and reform. We are nothing more than silly putty. Slap me onto a page from the Sunday comics, pull me up and pull one end ... see me change? That's how I'm feeling lately (pulled and squashed, pulled and squashed). There just is no stable floor to stand on. And yet ... we'll make it through it. Each change brings forth something more. Each change surfaces something new. Some exciting, some not so. Some very scary. We'll plug on and we'll plug in. One foot in front of the other. Left, left, left right left.

Specific Prayers:
~That Rachel's ankle pain cease.
~That Rachel stop toe walking.
~That Rachel remain fever-free.
~That Rachel's counts remain high.
~That Rachel's upcoming scans show drastic shrinkage in all areas of tumor.
~That Rachel have no long-term side effects from chemotherapy, surgery, or radiation.
~That Rachel be given the miracle of a cure on earth!!!

GIVE US A FIX IN 2006!!!

Saturday, December 16, 2006 8:43 AM CST

We are now on the backside of getting casted for the first time and our daughter now glows in the dark!! She says she turns on like a candle but we can't blow her out. Too funny!!! :-) Yes, we have glow-in-the-dark casts on.

Casting ended up being an ordeal, I'm sad to say. The therapists were very nice and we got in on time. They took the measurements they needed, watched her walk and run, let her pick her cast color, and then started the casting process. Rachel was laying on her tummy and she kept moving her feet while they were trying to cast her. The therapist had to have a chat with her about it. I'm sure it felt strange but no matter, she had to hold still. She watched a movie while they were casting her feet and there were no problems.

As soon as she sat up and swung her feet over the side of the table, she started crying. And crying, and crying, and crying. "They hurt!" she cried. "Where?" I asked. "EVERYWHERE!!!!" Hmmmmmmmm ... do they hurt or do they just feel strange? The crying and sobbing continued. "They hurt!" I'm looking at the therapists who are looking at me. Great. Now what?? "They're tight!" comes another sob. "Yes, they don't let your feet move, Rachel. That's how they have to be." "NO!!!" The tears are streaming down her cheeks and Mommy's at a loss. "Let's try walking in them," the therapist suggests. "Why don't you walk to the bathroom so that you can see how your casts glow in the dark." Good idea. We slooooooooooooowly, shuffled to the bathroom with tears rolling the entire way. It was not fun. Actually, my cousin Pam who works in the NICU (Neonatal Intensive Care Unit--you know, REALLY tiny babies!) at Children's showed up and got Rachel to walk to her and coaxed her to the bathroom. I think Rachel was thinking, "FINALLY! Somebody who isn't in kahutz against me!" Tee hee!!!

We looked at the casts in the dark in the bathroom and then I carried her back. She continued to complain they hurt. Pam talked to Rachel while the therapist pulled me aside and asked my opinion of the whole thing. I honestly had to tell her that I didn't know being that this was the first time she'd ever had a cast on. I told her that I certainly didn't want to discount the fact that she says they hurt, but being that she couldn't specifically tell us where they hurt beyond "everywhere", I wasn't sure if it was actual pain or just frustration with having casts on and not being able to move her feet.

The therapist said that there was a real chance that there was a wrinkle in her left cast being that Rachel was moving her foot so much while being casted. She said that we could easily take the cast off and recast it and that she'd rather do that than have Rachel in any sort of pain for the next week or cause a sore on her foot. I told Rachel that we could take the cast off but that we would have to put another one right back on. There was no choice of not having a cast on. Her choice. Leave the one she has on, or change it. She wanted it changed. I asked her one more time if she could show me where it hurt and then she actually pointed to the back of each ankle.

Out came the machine to take casts off and soon she was out of it. And ... sure enough ... there was a wrinkle in the back of her ankle and she already had a mark where it was rubbing. She layed back down on the table while they re-casted her left foot and promptly fell asleep. She had worn herself out from crying. After the left foot was re-casted, the therapist looked at me and said, "I think we should just re-do the right one, too." Okay. So they cut the right cast off her foot and Rachel slept through the entire thing. I asked the therapist how many times she's had kids sleep through that obnoxious ordeal and she said, "Not many!!" We were all getting a good giggle out of it. Rachel didn't move. She was out cold. Poor honey. The right one also had a small lump in it but the therapist didn't think that that should've bothered her. Well, this is RACHEL we're talking about!

After both feet were re-casted, I woke her up and she said they felt better. We did take a walker home because if she was going to walk like she did to the bathroom, school was going to be a problem. I stuck her in the stroller and we went home.

On the way home, Rachel was singing and telling me stories and jokes. I was thrilled that she was so happy. Obviously, the casts were causing her pain before. But, being that it was the first time, and being that she couldn't point out an exact spot that they hurt right away, how do you know if it's really pain or if it's just something she doesn't like? I'm really glad we changed them!! Guess she knows now that she needs to hold COMPLETELY still!!

Once home, I sat Rachel on the couch and went back out to the car. When I came back in, Rachel was already walking all over the place!! Huh?!?!?! The walker came into the house and has sat in the corner where I first put it ever since. I take that back .... Lance has hobbled around like an old man with it making his sister double over with laughter! Rachel gets around like nothing's wrong and she doesn't let them slow her down too much. I took the kids to school yesterday and got her settled into class. She took a bag of markers and her class signed her casts. They are WAY too cute! The day went great and she still wanted to do all the activities we had planned for that afternoon/evening--we went to a movie, got haircuts, went out for supper, and did a bit more Christmas shopping for people that the kids have to give to.

Rachel's going to do just fine in her casts. WHEW!!! I really didn't know what to expect. The therapist is guessing 6-8 weeks of this. I'm still preparing myself for 8-12 weeks because then if she's done in early February I'll be absolutely elated!! :-) The kids have practice for their Christmas program today and Rachel has a birthday party. Another full day ...

Specific Prayers:
~Thank the Lord that Rachel is able to get around well in her casts.
~Thank the Lord that Rachel is handling her casts well both emotionally and physically.
~That the casting only take six weeks (tee hee!!!)
~That Rachel's counts be high enough on Tuesday to have chemo.
~That Rachel remain fever-free and not get any of the flu or crud that's going around.
~That Rachel's upcoming scans show drastic reduction in ALL tumors.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

GIVE US A FIX IN 2006!!!

Monday, December 11, 2006 1:01 PM CST

We got to spend Friday afternoon/evening in the hospital getting a blood transfusion. On Thursday, I got a phone call from the nurse at school saying that Rachel had suffered a nose bleed earlier in the day and that now she had a headache. I went and picked her up and a dose of Tylenol was given and, once again, she was feeling fine after it took affect. We decided to have home health care come out and check her counts after going to swimming lessons that day.

We found out Friday morning that her hemoglobin had not changed since Tuesday, but being that she was suffering headaches (may or may not have been from the the lowered hemoglobin) and being that she was pale as a ghost (her lips had not one tint of color to them) and she was tired, we decided to "tank her up". I could literally watch her turn pink in front of my eyes as the blood transfusion continued on. I can tell it made a difference as today she has more energy than she's had in a while. That's a GOOD thing!

Well, I have to admit that I was WAY off on the casting forecast. Before leaving for the hospital Friday, I got a phonecall from the physical therapy department saying that they're ready for her this coming Thursday. So ... this is going to get interesting. Both feet will probably be casted. I do not know if she'll be able to walk or not--her therapist says she should be able to. Even if she can, the two casts together will probably weigh more than she does!! :-) I really don't see her walking all over school with two casts on but I hope she can. We may be headed towards a wheelchair for a few months ... I really hope not. With two casts on, bathing is going to be interesting, too. How's laying sideways in the bathtub for ya?? I'll be going to get some of those cast protectors this week! She will be missing her last swimming lesson, but what do you do? Lance was going to go for the last one anyway and get tested, so I'll take him and he'll get to be by himself. Oh, well. She seems to be handling it very well. She announced to Lance last night when he was talking about swimming, "I have serial casting on Thursday." "Yes, but what about swimming?" he asked. "I have serial casting," she answered and walked out of the room and jumped into Mark's lap and told him about her serial casting. She told him about the different colors and the glow-in-the-dark choices she will have. When Mark asked if he gets to sign her cast she looked at me with a questioning look. I shook my head yes and said, "Oh, YES, we get to draw all over it!!" "I'm going to practice my dragons!" Blake announced from the other room. Rachel giggled and said, "He just has to look in the mirror." "I HEARD that!" came the reply from the other room. This is going to be "fun" ...

Rachel will also now be in casts for her Christmas Program at church which is the 17th. Again, what do you do? Mark and I chatted briefly about waiting until after Christmas, but that would mean that we would have to surrender the spot that has opened up and wait for the next one. We said we were going to do this, so why put it off longer? Also, if she had started this several weeks ago she'd be in casts for all of this anyway, so we're starting.

I guess Rachel won't be wearing any shoes for a while. Gonna have to get her some fun fuzzy socks to wear. Maybe some Christmas ones. Something fun ... and warm. But, I suppose you only put them over the toes as you don't want them on the bottom where you walk--that would be slippery. I have a feeling we're going to be learning a lot!

Two weeks and counting!! Got your shopping done? I don't ...

Specific Prayers:
~That Rachel's counts are high enough for chemo on Tuesday.
~That Rachel remain fever-free.
~That Rachel be able to walk in her casts.
~That Rachel not need a wheel chair.
~That Rachel keep a positive attitude about the casting.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

GIVE US A FIX IN 2006!!!!

Thursday, December 7, 2006 6:54 AM CST

Rachel's counts were good enough on Tuesday to have chemo! YIPPEE!!! Her platelets were way up but her hemoglobin is drifting towards the numbers of needing a blood transfusion. That's a bummer, but we'll deal with it. Her doctor was rather surprised being that Rachel is taking a drug to supposedly help with that.

We found out that Rachel is currently third on the serial casting list. I'm thinking we'll probably get the call the week after Christmas and casting will start the first week in January ... now we'll sit back and see how off I am!

I did finally get the kids to sit down and make out their Christmas Lists. What interesting lists! Our little tom-boy, Rachel, has Hotwheels and Matchbox racing stuff, Transformers, Nerf guns and Power Rangers (along with a whole host of other "boy" toys) listed on her list, along with Sassy Stable Shimmer Head (imagine one of those Barbie heads that you could do the hair on and replace it with a horse head), Polly Pockets stuff, and a vanity thrown in for good measure! What a hoot!!! Oh, and don't forget the iPod and the Wii! WHAT???? I just shake my head. Lance's was more straight forward with all the typical tractors, bulldozers, Legos, Hotwheels/Matchbox car stuff and remote control vehicles, but please don't forget the new computer and iPod! Oh, and the "guy at Walgreens that's holding a steering wheel and makes noise. Tell Santa I really want him." HUH??? When were you at Walgreens?? "With Daddy," came the reply. Yeah, I'll get right on that one. Blake's list definately shows that he's a teenager. Electronics and games for said electronics take up the majority of the list with the Nintendo DS being at the top. Of course, said electronics will cost Santa. Not so sure that said electronics will be in the stocking this year! And, being a new hunter, there's also the token new shotgun and pair of binoculars! Oh, and a pair of skis, too, please! Yeah, and that dreaded iPod, along with both the Wii and a new computer.

I think this year we're going to be getting the lesson on "the more expensive the present, the less presents there are". There is such a thing as a budget and if you meet it with one gift, then one gift there will be! This could get interesting. Oh, the lessons of life!

I know that there have been some requests for the children's Christmas lists. If you would like to have them, please email me at FlyingCook@aol.com and we can converse about it. I don't want anyone to think that they have to get any of our children any gifts of any sort. It is not necessary.

We are getting ready for a Christmas Festival at our church this coming Sunday. Blake is in the Youth Handbell Choir and Rachel is in the Youth Choir. They are both performing many songs along with the Adult Choir which I'm in. Rachel has been practicing her songs everyday and is really getting to know them quite well. She's quite funny. She made me call her choir director and get copies of all of the songs so that we could practice them together.

We're hoping to not have to make a trip back into the hospital until next Tuesday for chemo. Hopefully everything will just keep moving the way it has been for the rest of the week.

Specific Prayers:
~Thank the Lord that Rachel's counts were high enough to get chemotherapy.
~That Rachel's hemoglobin climb quickly so that she doesn't need a blood transfusion.
~That Rachel remain fever-free and not catch any of the intestinal crud that's going around or anybody's cold.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!

GIVE US A FIX IN 2006!!!!

Saturday, December 2, 2006 11:08 PM CST

Friday I received a phone call from the school nurse. Rachel had a bad headache and wasn't doing well. I went into school and picked her up and the poor thing just cried. She didn't have a temperature but her head was pounding ... probably due to low counts. I got her home and she vomited (she tends to do that with headaches--I'm assuming they're migrains). I gave her some Tylenol and sat and held a "baby" for several hours. I could tell that she was feeling better about an hour after getting the Tylenol into her, but she was enjoying Mommy's lap way too much and wasn't "allowing" me to go anywhere except planted in the recliner with her watching movies. Last night she was as perky as ever and she seems to have made it through unscathed.

Today we started the Christmas decorating (that is no small job) with hopes of finishing it on Monday as tomorrow we're cleaning deer (we butcher our own). It's going to be a long day as we have six to clean. But, there should be lots of people here helping so we're hoping to not be at it until all hours of the night--we've done that one too many times before! Rachel loves to help--all three kids do, actually. And they are good helpers.

Rachel heads to the clinic on Tuesday for more chemo--hopefully. We still haven't heard from the casting therapist as to when we might be starting that. Hopefully we'll know something about the time schedule this week. Rachel is getting two more swimming lessons in over the next two weeks ... she's quite excited about that. Lance gets to go to one of them and the instructor is going to see what level he is and maybe next spring Rachel and Lance will be able to have lessons together. If not, we'll get Lance into another class at the same time as Rachel is having one. He can hardly wait!!!

Specific Prayers:
~That Rachel's counts rebound quickly.
~That Rachel remain fever-free.
~That Rachel be able to have chemo this Tuesday.
~That Rachel's upcoming scans show drastic improvement in all areas and no areas of growth.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

GIVE US A FIX IN 2006!!!!

Wednesday, November 29, 2006 3:06 PM CST

We went to the clinic yesterday and found out that Rachel's counts are once again borderline for having chemo. Her white count was only 1200 making her ANC only 480. The cutoff they've decided for chemo for her is an ANC of 500. They decided to fudge and call her ANC 500. :-) Her platelets were down to 53,000 with 50,000 being the cutoff line. She got both chemos yesterday but only at 50% for the one. We're thinking of just keeping her at a 50% dose (we upped it to 75% last week because her counts were so good) so that we can at least get something in every week and not be playing this "counts game". Her Hgb was 9.9--I again thought it would be lower. Thankfully, it's not. Guess I won't be surprised if we end up back at the clinic sometime this week for a platelet transfusion, though.

Rachel's next scans are set for the Dec. 27th and 29th. The PET will be on the 27th with the CT and MRI on the 29th. We'll then have an appointment with her oncologist and go over the scans. Will be interesting to see what's happening. We're kinda on pins and needles.

This Christmas Eve we'll be hosting a combined celebration with Jodi's family and her dad's fiance's family (future step-family). We had an engagement party with the two families a few weeks ago and had a wonderful time, so we're looking forward to spending more time with them. Of course, hosting a gathering means cleaning the house from top-to-bottom. And, believe me, ours needs it!!! I started in the basement a week ago and I'm still there!!! UGH!!! Looks great, though. Blake came downstairs all wide-eyed and said, "WOW!" Yeah, I thought so too. :-)

Rachel continues to wear her braces at night without a fight and her physical therapist said that she could tell a difference already in Rachel's range of motion in her right ankle just from being braced. She was quite surprised. We saw Rachel's orthotist yesterday and he was surprised, too, that her range of motion would've increased with just the brace. Hey, we'll take it!!

Specific Prayers:
~That Rachel's range of motion in her ankles continue to increase.
~That Rachel's counts rebound quickly and stay high.
~That Rachel remain fever-free.
~That Rachel's upcoming scans show drastic improvement in all areas of tumor with no new tumor burden.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

GIVE US A FIX IN 2006!!!

(Anybody got some suggestions for 2007?? The only one I can come up with is "Keep her out of heaven in 2007" and that just sounds kinda morbid!)

Wednesday, November 22, 2006 4:35 PM CST

Rachel's counts were plenty high enough to get chemo!! WOO HOO!!! The docs are thinking that the radiation has finally stopped taking it's toll. Her white count was over 5,000!! Her platelets without any transfusions were 83,000 and her hemoglobin was over 11.0. We're thrilled!!! Last week they had only given her a half a dose of one of the chemos so this week we're trying a 3/4 dose to see what happens. Sure would be nice to get to a full dose!

I also got to read the final report from Rachel's CT scan last week and see the actual scan and compare it to her last one. Sadly, the final report is saying that there are new tumors on her liver. Her last two PET scans have showed activity in her liver, but since PET scans can show areas of inflamation or other activity and being that they didn't show on either of those CT scans, the doctors didn't think too much of it. Well, now we've got stuff on her liver. I saw it with my own eyes on the scans. It's defeating. It feels like getting punched in the stomach. Part of me wants to cry. Part of me just sits and sighs. Part of me is holding my breath. Part of me is just down-right mad.

We've decided to continue with the treatment plan that we're on for another six weeks. There are many tumors in her lungs that are very visibly smaller. In six weeks we'll do a CT scan, a MRI scan, and a PET scan. Then we may have to make some more tough decisions. Nothing's ever easy is it? Sure would be nice to have some smooth sailing instead of getting the wind knocked out of our sails.

Rachel continues to feel descent and she looks good ... except for her very wild hair. It has thinned so much that you can see her scalp through her hair and it's gotten course. What's there mats very easy and likes to stand straight up. It is the strangest stuff to work with. She seems to have constant VERY bad bed head.

The kids are excited about Thanksgiving Day and spending it with their cousins. Rachel, as a matter of fact, is grinning from ear-to-ear. May you all have a blessed and safe Thanksgiving!!

Specific Prayers:
~Thank the Lord for all of the blessings in your life.
~Thank the Lord that Rachel's counts are so high.
~That Rachel's counts remain high.
~That the chemo shrink ALL of Rachel's tumors and for no new ones to form.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

GIVE US A FIX IN 2006!!!

Monday, November 20, 2006 6:49 AM CST

The kids are excited because there are only two days of school this week. Lance can hardly contain himself because he's got better things to do then go to school, you know.

Today is Rachel's last day of her PT Waterworks class. She's quite disappointed by that. She had to make sure that she was still going to get to go to swimming lessons ... she has two left and they aren't for a couple of weeks. She's happy and sad about that, too. Can't keep that fish in the water enough, I guess.

Rachel did get to go to a movie with her swimming instructor this weekend and had a great time! She was grinning when I took her out of the car afterwards and she said she had a good time--I don't doubt that!

Before Waterworks today, we will go into the clinic and get Rachel's counts checked to see if she'll be able to have chemo tomorrow. She's actually looking pale but I don't see how her hemoglobin could've dropped that fast over the past couple of days. This chemo has been dropping it slowly. She's also on a drug to help keep her hemoglobin up. Guess we'll find out this afternoon.

Rachel brought home an excellent report card from school on Friday. We're very proud of her. She's keeping up with where she needs to be and her attitude and respectfulness are above expectation ... we'll take it! :-)

This weekend was Blake's first deer hunting season. He's been sitting out with Mark in the deer stand every day and hoping to get a shot at something. So far everything's been out of range for him, but he's got Thanksgiving vacation to go sit in a tree. Blake has been waiting for this week for YEARS!! Of course, Lance is drooling and chomping at the bit to be in Blake's position right now ... four more years, Buddy.

Hope you all have a wonderful Thanksgiving whether you are spending it with friends, family, or on your own. We all have many things to be thankful for. Even when the outlook doesn't seem real bright, our blessings are bountiful. Praise God from whom all blessings flow!!

Specific Prayers:
~Praise and thank God for all of your blessings.
~That Rachel's counts be high enough for chemo.
~That Rachel remain fever-free.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

GIVE US A FIX IN 2006!!!

Wednesday, November 15, 2006 7:43 AM CST

I did not get to see the scans with my own eyes yesterday because the computer system just didn't want to pull it up. Rachel's doctor did look at them and met with the radiologist, though. She said that the preliminary take on the scan is that the tumor that was radiated is drastically smaller. She said that she couldn't even find it--the radiologist had to point it out to her. So, there is some left, but she feels that will resolve itself given a bit more time. Many nodules in her lungs have gotten a little smaller but the tumors in her pleura (these tumors are like putting an orange peel around her lungs) seem to have increased a little. Rachel's doctor said that she couldn't tell that they were larger with her own eyes, but the radiologist said they were so she has to trust him. That means that they aren't much larger.

Rachel's doctor feels that since we're doing drugs that target the blood vessels of the tumor that this isn't necessarily bad news. It's not jump up and down and do cartwheels news, but its not the kind of news where you sit down and cry either. She feels that it's too soon to give up on what we're doing and that we should stay the course another six weeks. We agree. At that point, we'll do a full set of scans (MRI, CT, PET) to get the full picture of what's going on.

So, I guess we're thankful that we did get shrinkage in most areas and that what appears to be growth is minimal. Rachel's counts continue to be borderline for chemotherapy. She did get chemo yesterday ... barely. Her platelet count was great, though! Well, for a chemo kid that is. Rachel's counts were:

WBC: 1,800
Hgb: 11.0
Plt: 83,000
ANC: 648

I'm thinking that her ANC is going to bottom out this time again. Sure hope she doesn't get sick. I've been having some issues with a stuffy, runny nose that's running down the back of your throat giving you a sore throat which is transferring pain into your ear kinda deal and I've been trying not to give it to Rachel but now she has started living with a tissue box near by, darn it all anyway. She's also complaining about being cold this morning and that her head hurts. She's sitting cuddled up under a blanket right now. I'm hoping it's just "the house is too cold in the morning" syndrome and not anything more!!

Specific Prayers:
~Thank the Lord for the results of the scans.
~That Rachel's ANC stay above 500.
~That Rachel's hemoglobin stay at 11.0 and that her platelets don't drop below 60,000.
~That Rachel not get a fever.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

GIVE US A FIX IN 2006!!!!

Monday, November 13, 2006 2:06 PM CST

Tomorrow is scan day. Please get down on your knees and ask God for drastic improvement in all areas of tumor burden. We'd even take an "all clear". :-) Rachel is only having a CT tomorrow of her chest and abdomen, but those are the areas that have active tumor. Being that it's only a CT and being that she will hopefully be having her long chemo tomorrow, too, we should definately have results before leaving the hospital in the early afternoon. I pray that we will be rejoicing.

Rachel decided to try her braces at night last night rather than to have to wear them while she was awake for 3 1/2 hours. This morning she decided that that was DEFINATELY the way to do it! She actually slept all night with them (I did think that she would wake up at some point) and she was pretty impressed that they didn't bother her during the night. Mark and I are thrilled because it means that she wore them for 10 1/2 hours and she didn't have to really deal with them at all because she was sleeping. And being that she was only up to 3 1/2 hours, she actually got 7 hours of extra stretch in!! We're all happy. They are now sitting by her bed and that will probably be their permanent home.

Rachel's hair seems to be getting even thinner and messier. It's just a totally uncontrollable mop on the top of her head. You really can't control it. Besides the hair changing, she's actually putting on a little weight!!! WOO HOO!!!! Not only is it showing on the scale, but when I looked at her this morning while she was getting dressed, I felt she looked more "filled out". What a great thing to see! She hasn't been on the scale for a week, so it will be interesting to see what it says tomorrow! Anything over 36 pounds and I will be doing the Happy Dance! She made it up to 36 pounds quite a while ago once before. If she could get up over it and STAY there ... that would be an accomplishment! Thirtyseven pounds, here we come!!!! Wouldn't that be GREAT?!?!?!!?!?!?

Specific Prayers:
~That Rachel continue to wear her braces at night without arguing.
~That Rachel's CT scan show drastic improvement in all areas.
~That Rachel continue to put on weight.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

GIVE US A FIX IN 2006!!!!

Thursday, November 9, 2006 6:51 AM CST

Rachel's orthotics have not been what I thought they would be in the beginning. I thought she'd be going cold turkey into wearing them all day. Happily, that has not been the case. She actually gets to choose if she wants to wear them at night or during the day. I know which one I'd chose, but I'm not Rachel! She chose to wear them during the day because "I kick my feet at night". Uh, yeah ... SO????? Not Mommy's choice to make, though.

Secondly, she gets to start out in half hour increments for wearing them. So Tuesday during supper she wore them for a half an hour. Yesterday evening she wore them for an hour. It will continue to increase by a half hour until she's wearing them the entire day. Truthfully, I think it might feel weird in the beginning to sleep with them on, but I think one would get used to it. I also think that any pain that would be associated with walking in those things (rubbing, etc) would not be an issue because you'd just be laying in bed. But, once again, it's not up to me.

Rachel does walk around in them and she thinks she's pretty funny. "Look how I walk, Mommy! Don't I walk funny?" she asked on Tuesday. "Yes, you walk funny. You look like you're marching." Of course, she thought that was great and marched all over the house. When I was "pretend" walking in them I had my knees locked and not just my ankles. I don't know why, but I did. The braces don't go over her knees! I knew that, but yet that's what I was doing. So, instead of robot walking, you march.

She doesn't exactly like them, but she doesn't fight me. I put them on her and then set the timer. "Am I done yet?" she asked 20 minutes into her first 30 minute session. Yesterday I heard, "Am I done yet?" 50 minutes into her 60 minute session. She's got that timing down! Today she'll wear them for 90 minutes. The hardest thing about them is getting them off and on. Mommy still doesn't have that one down yet.

Rachel is back at swimming lessons and loving it! She was actually working on side breathing during the crawl yesterday. She just seems so tiny to be doing that! I got asked again this past week if my little girl was three. I'm really not sure who gives a more horrified look, Rachel when she hears it or the other person when I tell them that she's six!! "OH!!! She's SO TINY!!!!" I can literally see Rachel fighting to keep her tongue in her mouth!!! Tee hee!!! Oh, maybe that's ME!!! :-) Seriously, Rachel is disheartened by those comments but we just blow them off. I make a big deal about how "very six" she is and how much she's grown and then she's all smiles again. Heck, she's already planning her seventh birthday party!! And to think "they" didn't think she'd ever turn five. We do not know or understand God's plan. It is not our job to know, but to follow and do His work in whatever way we are called.

Next week will be Rachel's last week of swimming lessons until at least March. I'm really hoping that all of the casting will be done by the time the Spring swimming session rolls around and she can once again get back into the water for lessons. They don't do waterproof casts because they're only on one week at a time before they're changed. One still has to be concerned about the inner lining of the fiberglass casts, too, because that's not waterproof. Her swim instructor and I agreed that it would be more of a hinderance anyway, and she'd probably be so weighed down on her bottom half that she'd sink to the bottom!! It's not going to hurt her to wait until March! I did look into those bags that completely seal over casts, and also found that our local pharmacy carries them. They are expensive but we will probably use them for bathing. I'm hoping that they can be reused. If not, bread bags are sounding good!

Rachel sees her rehabilitation specialist today. Lots of things have changed since we've seen him. Sometimes I wonder why they have us see him. He doesn't really seem to do anything except look her over and watch her walk and tell us to keep doing what we're doing and to come back in three months. It's her physical therapist that seems to be doing all of the work and making recommendations. I'm going to have to double check on that one. I hate going to his office because it's all the way across town and there's just no good way of getting back home from his office during rush hour traffic. I'm whining.

Next tuesday is scan day! Unfortunately, Rachel's blood counts weren't high enough to have chemotherapy this week, so we're hoping for chemo to happen the same day as her scans next week. I'm getting frustrated that chemo seems to constantly be delayed. I'm thinking we need to work on a different road map (that's what they call a chemotherapy schedule). Even with giving her only half a dose of one of the chemos last week, her counts still weren't high enough this week for it. We saw two different road maps for this type of chemo and I'm thinking we may need to change to the other one. I'll be talking with her oncologist about it next week.

Specific Prayers:
~That Rachel continue to tolerate her orthotics both physically and emotionally.
~That Rachel's counts rise so that she can have chemo on Tuesday.
~That Rachel's scans show dramatic improvement in all areas.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

GIVE US A FIX IN 2006!!!

Monday, November 6, 2006 6:44 AM CST

After school on Thursday, I took Rachel to the hospital to have a blood transfusion--her hemoglobin was down to 7.0. It's no wonder she looked like a ghost. It was also found that she needed platelets. This makes for a long stay (4-5 hours). It was made even worse when half-way through the platelets, Rachel starts moving around like she has cooties and saying, "My back itches. Scratch my back, Mommy. My back itches." I lifted up her shirt and she was broken out in hives all over her back and arms. She was having an allergic reaction to the platelets. Although having a reaction to platelets is not uncommon, Rachel has only done it once before. What it means is that besides Benadryl and Tylenol as premeds, she'll probably also be getting hydrocortisone--a steroid. They stopped the platelets, gave her more Benadryl and Tylenol and then we had to wait to make sure she wasn't going to react even more. We didn't get home until midnight.

The kids didn't have school on Friday, so at least Rachel got to sleep in a bit. She was on the verge of hysteria all day though because the day just wasn't moving fast enough. Grandma was having a sleepover with SEVEN grand daughters between the ages of 6-10 and she didn't want to be late!!! We're still not sure who was more excited ... the girls or Grandma!

While doing her homework yesterday, Rachel said, "I don't want to go to school tomorrow." "You won't be going all day. I'll pick you up right after lunch," I replied. "Oh? Where are we going?" she asked. "First, we have to go see Ellen." "Why?" "You need to have your counts checked to see if you'll be able to have chemo on Tuesday." "Oh." "After seeing Ellen, we go see Scott and then you go see Lynn." "Why?" "We see Scott to get your braces fitted and then you have your Waterworks class with Lynn." She shot me a look that sent daggers across the room.

Today is D-Day for the braces. She's not thrilled. Heck, we're not thrilled, either, but what do you do? I think it's going to be an interesting day. Especially since she gets to put them on and then take them off right away for swimming! She'll find that funny. Could be tough to get her back into them afterwards. Tomorrow's school day could be VERY interesting. Again, it won't be a full day if she's able to have chemo. It may not be a full day even if she's NOT having chemo. We'll have to play that one by ear. I'm sure she's going to be tired. Try imagining having braces on both of your legs that don't allow your ankles to move. I look like a robot when I try to walk without bending my ankles. It's going to take some practice, that's for sure. I'm sure she'll be tired.

Specific Prayers:
~That Rachel's counts be high enough today for chemotherapy tomorrow.
~That Rachel accept her braces without a fight.
~That the braces keep Rachel's ankles from more tightening.
~That Rachel be able to get into serial casting soon.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!!!

GIVE US A FIX IN 2006!!!!!

Thursday, November 2, 2006 9:16 AM CST

As predicted, Halloween was wicked cold! Being that this witch wasn't looking forward to a flight from house-to-house when the windchill was in the teens, we hopped a ride to the mall and trick-or-treated indoors! It was "controlled chaos" as I like to term it. Most people were very considerate and just got in line and followed the hordes from one store to another with the little goblins, Power Rangers, and Tinkerbells blurting out "Trick-or-Treat" and "Thank You" as fast as they could muster so they could get onto the next store. There were a few parents who thought that they should be above the rank-and-file and just butt their children in to get the candy. As I watched this happen, it was a sad awakening as to what these children were learning. And we wonder why some children are so rude and don't follow direction. It's quite obvious where they learn it from. One just has to sadly shake their head.

Lance and Rachel really had a good time and were dead tired (pun intended) by the time they'd haunted the entire Burnsville Mall. Now it was time for Grandma's house!! WOO HOO!!! Grandma ALWAYS has GREAT stuff!! :-) Blake chose to skip trick-or-treating this year and go with our church to a local community center where they were serving dinner to those in need. He wore his costume from last year and had a lot of fun. We thought it was a wonderful way for him to spend Halloween.

Not only did Rachel get to trick-or-treat on the evening of Halloween, but she wore her costume to the clinic on Tuesday and got to trick-or-treat around the "boo stations" that were set up there. She spent most of the four hours that we were at the clinic in the Child Life Specialist's office mixing vampire blood and being the official spooky tattoo put-er-on-er (how in the world do you spell that gramatically incorrect word???)!!! She had a blast!! Mommy actually got to quilt in peace with only having to play a couple rounds of "Guess Who?" That's a board game.

Yes, Rachel's counts were high enough (barely) to have chemo on Tuesday. Her hemoglobin has been slowly drifting downwards and she looks as pale as a ghost. We chose to start a drug that is supposed to help with that. They don't give it to a lot of kids but it's used a lot with adult chemo patients. The reason is that pediatric chemo treatments tend to me more aggressive than adults and tend to take the counts down and keep them down for longer periods of time than for adults. Therefore, it's not even worth giving this drug because it never gets a chance to work. The chemotherapy drugs that Rachel is currently on seem to be affecting her hemoglobin VERY slowly so they feel that this drug may actually have a fighting chance of helping to keep it up. So today after school, we're going in for a red blood cell transfusion to get her hemoglobin hopefully over 12 and then use this drug once every two weeks to try and keep it above 12. Would be nice if she wasn't always having to get red blood cells now, too. We'll recheck counts when we get there and depending on where her platelets are, she may get a platelet transfusion while we're there, too. It could be a long night. With the Benadryl that they will give her, Rachel will hopefully just sleep through the entire thing. She could use some extra sleep right now. She doesn't think so, though. You and I would be laying on the couch whining about how icky we felt and complaining that we just wanted to sleep. Kids are so resiliant! They know just one thing ... let me play!

As I was telling my girlfriend the other day, "Why were we in such a hurry to grow up? My to-do list is a mile long and I feel as if I'm always playing catch-up. There's never a moment that I don't have anything to do. It's been decades since I've said, 'I'm bored.' Remind me, why were we in such a hurry???" She laughed and agreed with me. Being an adult was supposed to be so much fun. You got to do whatever you wanted to do whenever you wanted to do it. When were such fantasies instilled? Big sigh.

I hope you enjoy the pictures of Rachel and Lance. For some reason, the one of them together doesn't ever come up. I don't know what happened and I've already taken it off my to-do list ... I'm not spending time trouble shooting it!!

Specific Prayers:
~That Rachel's hemoglobin be able to stay above 12 with the new drug.
~That Rachel's platelets remain above 50,000 on their own.
~That Rachel's upcoming scans show drastic improvement in all areas.
~That Rachel be physically and emotionally okay with her orthotics.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth!!

GIVE US A FIX IN 2006!!!

Sunday, October 29, 2006 11:09 AM CST

Rachel's counts have continued to drop. Even without chemo last week, her counts were down even further on Thursday when she had her blood drawn. And even though she had a platelet transfusion on Tuesday, her platelets were borderline for another transfusion. All we can do is shake our heads. We're going in tomorrow (Monday) for more counts.

The kids are counting down the days until Halloween. Lance has his "Harvest Party" in school that day, but Rachel's class is not ... they are doing their "Harvest Party" closer to when harvest would actually be finished--so sometime in November. Rachel will be missing school most of that day due to either chemotherapy or platelet transfusion and then we'll head back to school just in time to help with Lance's party. I'm going to let Rachel attend Lance's party rather than put her in the last hour of the day which is gym class--with low platelets it's not Mommy's favorite class anyway. She could be tired and crabby (especially if she's had a transfusion because she gets Benadryl) so letting her be at a party could be just the ticket.

Rachel's orthotist recommended a certain brand of shoes to wear with her orthotics. We went looking for a pair yesterday and neither Rachel nor Mommy were too thrilled with the selection. They have a TON of types for boys, but only TWO for girls. TWO! We did get a pair that are black with hot pink on them, but Rachel was pretty much horrified as they have laces and not velcro. She didn't want me to buy them but being that this wasn't the first place that we looked (nobody had her size in stock), I bought the last pair there. She was mad. I told her that we could keep looking but that we at least needed a pair of shoes to try the orthotics on with and that we could always return them. I also told her that she could have more than one pair of shoes. Then she was okay with it. I'm going to run some of the brands by her orthotist that have been recommended by others (including the ones in the guestbook) and see what he says. I know they have to be really flat because the orthotic will give her the arch and they don't want the heel higher than the toe because that doesn't give them the angle that they want for walking. So many tennis shoes have the heel higher than the toe and all that does is help these toe walkers walk on their toes even more--exactly what we're trying to get rid of. She had what I consider to be a GOOD pair of tennis shoes on (Stride Rite) and he didn't like them because of the heel higher than the toe issue. We'll see what he says and what I can find. I'm also wondering if slip-on shoes even work with orthotics. You know, the kind of tennis shoe that has elastic in it rather than laces. The reason I'm wondering is that my mind is turning about what to do with the shoes I've already bought her to make them user friendly for her. I could easily do an elastic band through it so that she could get them on and off easily. Have to run that by him, too. I'm thinking dress shoes for Christmas are pretty much out of the question. How about a nice pair of black velvet pants with a sequined hot pink top?!?!? It'll match the shoes! She's so anti-dress right now that pants would've been in the works with or without the orthotics. She says she's too cold in a dress and that pants are warmer. Gotta give her that one.

It's beautiful here today and as I predicted, it's going to be darn right COLD on Halloween. It may be a short night ...

Specific Prayers:
~That Rachel physically and emotionally handle her orthotics.
~That Rachel's counts rise rapidly so that she can have chemo on Tuesday.
~That Rachel's upcoming scans show drastic improvement in all areas.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth!

GIVE US A FIX IN 2006!!!!

Wednesday, October 25, 2006 9:51 PM CDT

As the days come and go, so do blood counts. Once again, Rachel's counts were too low for her to have chemo on Tuesday. Her WBC was only 1000 and her ANC was 770. Her Hgb was down to 9.0--she looks like a ghost, actually, and her platelets were only 27,000 so she got a platelet transfusion instead of the wanted chemo.

I was told Tuesday that it can take up to three weeks for the radiation to stop doing it's "number" on the blood counts. So ... maybe in another week we'll see a change. The plan now is to get counts drawn tomorrow after school (but Mommy figured out tonight that that isn't going to work being that she has swimming lessons and then we have to get Lance to a birthday party--I really don't know what we're going to do at this point) and then next Tuesday we'll give her both chemo's that she missed this week but only a half-dose of one of them. Then we'll see where her counts go from there and make adjustments in the dosages. We don't want her to continue to either miss doses or have delayed doses because of her counts. Hopefully the radiation portion of this equation will be out of the factor in a week or two and we'll know exactly what we're dealing with as far as the chemo is concerned.

Rachel got fitted for her orthotics on Tuesday. She picked out a Teddy Bear print for them ... should be cute. She really wasn't minding it too much. I think we've gotten her psyched up about all of the things she's going to be able to do faster and better once this whole ordeal is finished. The orthotist made me feel good about our choice to go with Children's for casting versus her Rehab Specialist which is at Gillette even though we will have to wait longer. He said that he sees kids from both places and he's much more impressed with Children's program than with Gillette's. Too many of the kids that come from Gillette's after their casting end up going to Children's because they have to be recasted. Now, that would stink. He gave several reasons why that happens. I was surprised on one hand, then again, we know how good Children's is!! He also felt that Rachel will respond quickly to the casting and doesn't think she'll be in a cast from 8-12 weeks. He said we should see drastic improvement in her in only four weeks!! Wouldn't THAT be nice?!?!?! He's thinking right now that she'll probably only need an orthotic during the day and no splint at night. She'd like that, too! It was nice to hear some good news for once. I have to buy Rachel special shoes this week so that we can have the fitting done next week and that he can see her walk with her orthotics in her shoes. I don't suppose these "special" shoes come with lights, do you?? Hopefully they're somewhat interesting otherwise I see us decorating another pair of shoes!! UGH!!!!

Rachel also got her flu shot on Tuesday. She chose to have it in her skinny little arm rather than her leg. They chose to have two nurses in the room figuring that we'd have to hold her down. We let her pick last week which day she wanted to have it (last Thursday or this Tuesday--of course she chose Tuesday). We told her we thought it would be better to have the shot in her leg (more meat there) but she wanted it in her arm. So, we went with all of her decisions and that little sweetie just sat as still as could be as they gave her that shot and didn't wince or move or cry at all. We were all totally amazed. I commended her and told her how proud I was of her and that she now set the bar for the rest of the family. Lance looked at her at dinner when she told him, "You didn't cry? Not at all?" Then he gulped and you could see the wheels in his head turning, "If she didn't cry then I can't cry. I can't cry. I can't cry. How am I not going to cry?" He'll get his in a couple of weeks.

Scans are set for Tuesday, November 14. It will just be a CT scan this time with a full set of scans six weeks from then.

Rachel got her Halloween costume today. I'm really not into the Halloween thing this year. We still have no pumpkins, I just did the costume shopping today, and to tell you the truth, I really could care less about taking the kids trick-or-treating. It's probably going to be cold and I really don't want them eating all that junk. Mom's already a crabby old witch! Who needs a costume??? Bah-humbug! Whoops, wrong celebration. What is she? She's a pirate, don't ya know! And a darn cute one at that ... but don't tell her! Arrrrrrrgh!!!!!

Specific Prayers:
~That Rachel's counts rise high enough for chemo and continue to climb.
~That Rachel's ANC not drop below 1000 after any chemo.
~That Rachel's scans show drastic improvement in all areas.
~That Rachel handle her orthotics and casting with a wonderful atitude.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel receive the miracle of a cure on earth!!

GIVE US A FIX IN 2006!!!!

Monday, October 23, 2006 6:57 AM CDT

Rachel's counts have continued to climb and she was able to have chemotherapy on Thursday! Woo Hoo!!! We do pray for some strange things ("PLEASE let my child be able to have chemo!")

I talked to her Rehabilitation Specialist's nurse, and the earliest appointment we could get is November 9th--we are also on a cancellation list. The nurse told me that Rachel could be casted right away the day that she is seen if we wanted to do it there. Mark and I discussed it and decided that Rachel's Waterworks class (her PT water class) and her swimming lessons go up to Thanksgiving. We don't want to take those away from her because she loves them so much. They are going to add another therapist to the casting schedule but she will need to be trained for about a month before taking on any patients which will bring us to around December 1st. With Rachel's water schedule, December is looking to be good timing and we've decided that the first of the month or the end of the month doesn't really matter to us. We're going to wait and do it when it's available at Children's.

Rachel's therapist did call me and said that she would like to see Rachel in an orthotic (brace) between now and the time she is casted so that her ankle doesn't get any worse. She also felt that there's a chance that the orthotic will help to stretch that ankle a bit and she may not have to spend as much time in a cast ... all maybe's, off course. So, Rachel has an appointment to be fitted for an orthotic on Tuesday of this week. They will then have to make the orthotic and it won't be ready until the end of this week or the beginning of next week.

Rachel is getting used to the idea of the cast and the orthotic. She's defineately not excited about having to wear them, but the idea that she's going to be able to keep up to the other kids in her class when she runs, skips, and plays sure has her attention. We just keep playing up how she's going to be able to climb steps, run, skip, jump, etc. without always having to depend so much on her left leg and that that will make her faster at everything. We've also talked about how after she has the cast that her feet and legs won't hurt so much (her left leg hurts from compensating so much--it gets used A LOT, and her right leg hurts from muscles not being able to stretch and from walking on her tiptoes so much). She's all ears when we talk about being faster and having less pain. She was actually talking to me about how she was going to take a bath with her cast on. She's making great strides with the emotional part of this. I'm sure we'll still have ground to cover when she actually starts wearing the orthotic within the next week or so, but we're happy that she's at least started to emotionally work on it. So often she just drops her head, tunes us out, and won't even want to begin to listen to what we're saying when it comes to things she doesn't like or doesn't want. We're taking what we're seeing and hearing as quite positive. The idea that she will physically be able to move her ankle so that she can ride a bike next summer has her attention, too!! There are just so many positives that will come from this that three months in a cast hardly seems that bad ... okay, that's from a Mom's point of view! We do not know how long she'll need the orthotic after the casting is done, but if she works hard--which I'm positive she will--she should be done with it sooner rather than later. I'm already envisioning the difference for next Spring. :-)

Rachel's hair is thinning. Her doctor told me when we started this new chemo that she shouldn't lose her hair but that it would probably get thinner. She was right. It's definately thinner. I can see her scalp through her hair very easily. I'm sure that our close friends can recognize the difference, but most people wouldn't. Her hair is so fine and scraggly that she can get quite the "do" going on at times! In the mornings she literally looks like a tom turkey with his feathers all spread out! Her hair literally stands on end. I've never seen anything like it before. She doesn't even need any hair gel, it just does it!! Takes LOTS of detangling spray every morning.

We are hoping that her counts will now stay up so that there are no more delays with chemo and no more blood transfusions. Chemo will hopefully just become a routine weekly event. Scans should be in about two weeks--haven't heard an exact date yet. Another busy week of appointments is ahead of us. Will be nice to finally get everything into a groove ... I'm dreaming, aren't I????

Specific Prayers:
~Thank the Lord that Rachel's counts were high enough to have chemo.
~That Rachel's counts continue to remain high enough to receive chemotherapy as scheduled.
~That Rachel be able to handle the orthotic and casting both emotionally and physically.
~That the orthotic and casting stretch Rachel's ankle so that she's able to have normal range of motion without pain.
~That Rachel's upcoming scans show great improvement in ALL areas.
~That Rachel not have any long-term side effects from radiation, chemotherapy, or surgery.
~That Rachel be given the miracle of a cure for Christmas 2006!!!

GIVE US A FIX IN 2006!!!

Tuesday, October 17, 2006 6:39 AM CDT

We got good news and bad news yesterday. I'll start with the good news. Rachel's counts are up! Well, they're better at least. Her white count is up to 1,700 and her ANC was 1,003. That means that she gets to stop those owie shots to increase her white count. Which means that her counts will drop in half for a short period of time, but it also means she's headed in the right direction. She did have to have another platelet transfusion yesterday and she didn't get any chemo because it was felt her counts were still too low for that. We're headed back in on Thursday to check counts and hopefully she'll be able to get her chemo then.

Now for the bad news. Rachel had her physical therapy re-evaluation yesterday. Since she was discharged from PT last spring, Rachel's oncologist and physical therapist both feel that her right ankle has tightened even more. Because of this, Rachel is unable to do things "correctly". She compensates SO much for SO many things, that it's beginning to be a hinderance. Also, her left leg is so much stronger than her right, that her right one will never get any stronger than what it is due to her compensation. Her therapist said that PT isn't going to help her because she's already strong on her left side and she can't help the right side get any stronger until we "fix" the ankle problem. Pretty much, Rachel's stuck where she's at--and could get worse--unless we do something about that ankle.

Rachel's ankel has limited joint movement because of two reasons: 1) surgery to remove her two different tumors in her pelvis which were around her sciatic nerve; and 2) one of the chemotherapy drugs she has been on is notorious for shortening and stiffening the ankle muscles. My understanding of the sciatic nerve is that it helps to pull your toes back. If the nerve is damaged, you can get what's called "drop foot", which is something that could be playing a part in this. Although we know she has some drop foot going on, it is minor compared to what it could be if more damage had been done or if the surgeon had taken out a part of the nerve as had crossed his mind to do.

To fix this ankle situation, Rachel's therapist is recommending serial casting. A cast will be put on Rachel's ankle to put it in a position that keeps the muscle slightly stretched. This will cause more muscle cells to actually grow, making the muscle longer and increasing her range of motion. After a week, that cast will come off, they'll move her ankle approximately 5 degrees and recast her. After another week, they'll remove that cast and move her ankle approximately another 5 degrees and recast her. They'll continue to this until her ankle is able to be in a "normal" position. Her therapist said it will take at least 8 weeks and could take up to 12 weeks.

This is not supposed to hurt. They move the joint in small increments so that there isn't pain. Her therapist really feels that this is the only way that Rachel's going to get her range of motion back in that ankle. It will be a walking cast so she will be able to walk on it, and once she's comfortable with the weight of it she should be able to do all of her usual activities including running, jumping, playing, etc. They want the kids to have as much activity as possible while in these casts.

These are "actual" casts like they use for a broken bone. That means they can't get wet which means once the casting starts, Rachel will not be able to be in swimming lessons. I think that will break her heart more than anything else. But, once we are done, she can go right back to it.

After the serial casting is done and Rachel's range of motion is where we want it, she will then need to wear orthotics (customized plastic braces) during the day for a while to make sure that she maintains this new flexibility. She will probably have to wear a soft splint at night for quite a while--like up to two years. Also, she'll start physical therapy back up once the casting is done so that she can gain strength in her right leg and learn to do everything correctly and stop compensating. It will be a multi-functional process.

Even though exercises are good, they can not cause the muscle cells to grow like casting can and it would take years of demanding exercises to accomplish what casting can do in just a couple of months. Although we're not exactly thrilled about this, we're not sure there is any other choice. We are happy it doesn't require surgery! What we don't want is to not do it and four, five, six years down the road Rachel wants to know why we didn't do it when she was six! Although difficult, it will be easier to do it now than in a few years.

Rachel, of course, doesn't even want to talk about it. Her therapist chatted with her about it yesterday and Rachel wouldn't even respond to her. Lynn mentioned that they should talk to Mommy about it and Rachel shook her head no. Rachel's nurse walked into the therapy room to talk to me about Rachel's counts and Lynn asked Rachel if they should tell Ellen about what they had been talking about and Rachel again shook her head no. "Should it be our secret?" Lynn asked Rachel. Rachel shook her head yes. So, secret or no, that's where she's probably heading. Could be interesting for the winter and keeping that foot warm and dry, but I guess we do our best.

There is a terribly long waiting list for kids who need casting. I was told by the scheduler yesterday that it could be at least Christmas if not later before Rachel would start. This, or course, did not make her therapist very happy and she was going to see what she could do about that--probably not much but she was still going to look into it. Rachel is number nine on the waiting list. There maybe another avenue, and that would be to go through Rachel's rehabilitation specialist and have his clinic do it. A couple of down-falls to that is that they are not located at the same place as everything else (matter of fact, they are clear across town) so that could lead to scheduling difficulties and could mean Rachel would miss even more school, plus they don't have physical therapists positioning the foot for casting but rather just casting techs. Her therapist felt that that probably wouldn't be as big of a deal for Rachel's situation, but she still hated to see us go somewhere else. We'll see what happens over the next couple of weeks. I haven't even checked with the rehab specialist to see if that's even a possibility--that's getting done today. Who knows, they may have a waiting list, too.

For now, everything continues as it has been. Hopefully Thursday she'll be able to get chemo and the affects of radiation will have past. Would be nice to once again put low counts and transfusions behind us.

Specific Prayers:
~That Rachel's counts continue rise quickly.
~That Rachel handle the casting well emotionally and physically.
~That Rachel be able to have chemo on Thursday.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel's upcoming scans show drastic improvement.
~That Rachel be given the miracle of a cure on earth!!!

GIVE US A FIX IN 2006!!!!!

Friday, October 13, 2006 7:00 AM CDT

Rachel's counts continue to drop. Her white count went from 300 to 200 and now her ANC is only 35!!! The good news is that radiation is DONE!!!!! WOO HOO!!!! No more daily trips into Minneapolis. I'm LOVING it! There is actually NOTHING scheduled on the calendar for today!! Although I'm thinking that I could really use a massage (I'm bound up tighter than a rubber band), staying home is all I want to do. No clinic visits, no radiation, no swimming lessons ... just puttering around the house.

We didn't see Rachel's regular oncologist yesterday but another one that we like very much. I decided to see what he would say about going to school and he said, "Send her." So, that's three votes (two doctors and a nurse) that say to send her to school. Guess where Rachel's going today??? YEP!! You got it! SCHOOL!!! She will have the option to have me come and get her if she's tired but I'd prefer it wasn't until after math class. We'll see what happens.

I've been told that her counts will probably stay low for another week. The radiation will continue to do it's thing for about that long and then hopefully her counts will climb back to a nice level and stay put! Rachel's hemoglobin is at least remaining high so she's not needing any red blood cell transfusions, but she's already scheduled for another platelet transfusion on Tuesday. At this point, we still don't know if she'll be getting chemo on Tuesday or not.

We have decided to rescan her six weeks from the start of the new chemo treatment which will be four weeks from now. That's when we'll know what the radiation has done and how the new chemo has been working. Hopefully we'll see great things!!

Specific Prayers:
~That Rachel's counts rise quickly.
~That Rachel remain fever-free.
~That Rachel's tumors shrink completely.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel receive the miracle of a cure!!!

GIVE US A FIX IN 2006!!!

Tuesday, October 10, 2006 9:20 PM CDT

Rachel's counts are literally in the toilet. My mouth dropped to the floor yesterday when they told me that her white count was only 300 and that her ANC was a whopping 111. Today her ANC is 78!

As a reminder:
Normal white count (WBC) is usually over 4,000.
Normal abolute neutrophil count (ANC) is usually over 2,000 (not always, but usually).

Your ANC is a measure of your neutrophils which is part of your white cells that fight infection. The ANC is the measurement they use to tell your ability to fight infection. When your ANC is above 1000, they figure that you're at a low risk of infection. When it is above 500 but below 1000, they figure you're at a moderate level for infection. When it is above 200 but below 500 they feel you're at a high level for infection. When it is below 200 they feel you're at a severely high level for infection.

Rachel is a whopping 78. Oh, yippee!!! Her oncologist was surprised, too. We can't believe she's bouncing off the walls with energy and looking fantastic yet her counts are so horrid. Any of us adults would be laying on the couch whining and asking everybody to do everything for us. Kids are SO resiliant. But, if she gets a fever right now, that will land us straight in the hospital without passing Go and without collecting our $200. The bag is not only packed, it's already in the truck. That should help out Murphy's Law, right???? Actually, we're up at the hospital so much that I don't want to be caught without it.

Rachel had a blast at her Waterworks PT class last night and could hardly wait to get back into the pool today for swimming lessons. She also had chemo and radiation today. Chemo is now a four-hour stint at the clinic so she didn't go to school today. Rachel is getting another platelet transfusion tomorrow so won't be in school again. With counts the way they are and with so much crud going around so early this year, we maybe waiting to send her back until her counts are higher. We'll see. One day at a time. Her doctor says if she wants to go and we feel comfortable with it, to send her. Right now it's that comfort level that we're dealing with. See how things are on Thursday.

Rachel's doctor reminded me today that it's time for our family's annual flu shots. I'm so excited! Yeah, right. She did say that with Rachel's compromised lungs, we do NOT want Rachel getting the flu. Hmmmmmmmmmmmmmm ... can we say, "Put the kid in a bubble"????? Hope that flu shot works because she's in school!!! Do I hear the word "tutor" being thrown around?? Gads, I hope not!!! She needs to be in school as much as she possibly can be. Hopefully once this radiation is over, her counts will recover and we won't have this issue again. That will make us all feel better. Don't need her running around with low counts the entire time she's on this chemo plan.

The rumor going around (started by Rachel's oncologist) is that one of the chemo drugs Rachel's on will be able to be given at home. Her doctor found out that the one she gets every week is given at home by at least two other facilities around the nation. The other drug that Rachel gets once every two weeks, must be given in the hospital but if we only have to go up for chemo once every TWO weeks ... HEY!!! That would be great! We just keep that home care office on their toes, don't we?? Tee hee!! We just keep reaching into new territory for them. It just means Rachel misses LESS school!!! That's always a good thing ... at least from Mommy and Daddy's point of view! :-)

Besides low counts all the way around, Rachel is doing very well (knock on wood). She's had no breakdown of her skin from radiation and she continues to handle it like a trooper. Do you think it helps that after EVERY single session they let her dig through a box that's bigger than she is that's FULL of Beanie Babies??? Now, she's been in treatment for almost three weeks and there are some days that they give her two, three, or four Beanie Babies at a time. Do you realize how many Beanie Babies that is???? Can we say "zoo"? She's been carting as many as she can carry in a large shoe box. I call it her litter box. Tee hee!!! Needless to say, there is an over abundance of stuffed animals at our house. The only good thing I've seen come out of this is that she's actually naming them!! She's named her animals before ... if it's a dog it's name is doggy, if it's a cat it's name is kitty (get where I'm going?) Now her animals actually have names like Stripes, Wally, Slippery, Rocky ... I actually got quizzed on all of their names the other day. Oh, boy.

Specific Prayers:
~That Rachel's counts rise quickly on their own.
~That Rachel continue to feel well and not get a fever.
~That Rachel's tumors shrink quickly to nothing.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of cure.

GIVE US A FIX IN 2006!!!!

Sunday, October 8, 2006 11:02 AM CDT

Rachel's platelets have continued to drop. A "normal" person's platelet level is 150,000 to 450,000. Rachel has been sitting anywhere from 55,000 to 95,000 for the last several months. Actually pretty darn good for a kid on chemo. They transfuse when the platelet level drops to 10,000 or sooner if they are having bleeding issues. A week ago her platelets were 95,000. On Tuesday they were 35,000. OUCH! On Thursday they were down to 22,000. The plan at that point was to have a home health nurse come out on Sunday and draw labs so that we could be ready to transfuse on Monday if the need arose. Rachel has a busy schedule already on Monday so we wanted to know ahead of time if we needed to come in early for platelets and not have that dropped on us last minute and end up being in the hospital until late that night.

At radiation on Friday, the radiation oncologist said that she won't radiate Rachel with a platelet level below 20,000. That must be something new because no one has ever mentioned it this whole time we've been discussing what to do with her platelets. After getting home from radiation that day, I called Rachel's nurse to tell her to just schedule a transfusion for Monday because of the radiation situation. Her nurse called me back after talking to both the radiation oncologist and another oncologist at the hospital (of course, Rachel's regular doctor is out of town at a conference) and because one of the chemotherapy drugs that she is on has a slight risk of bleeding internally, the oncologist said he would rather see her be transfused sooner rather than later. He wanted it done either that day or the next. We decided to run up that night again rather than ruin a whole Saturday, so an hour-and-a-half after we'd gotten home, Rachel and I packed up and went back up to the hospital for the second time that day.

This could affect her chemotherapy, too. Her doctor was mulling over rather she could have a transfused platelet level or whether her level needed to be her own for determining readiness for this type of chemo. We'll see what happens. She's due for both types of chemo on Tuesday. I really hope we aren't already going to be delaying chemo. That would not be good.

Rachel's handling everything very well! She's tired ... but won't admit it very often. She falls asleep in the car very quickly, no matter what time of day it is. But God forbid that Mommy would actually recommend a nap!! She's playing outside and running around like nothing's wrong at all. She's smiling and happy and actually went to school all week!! WOO HOO!! This coming week she has swimming lessons and can hardly wait. She's actually counting the days until she gets to go. This morning she said, "Mommy! In one day I get to swim with Lynn!" That's her physical therapist in the cancer kids pool class. "That's right," I answered. "And, Mommy! In two days I get to swim with Laura, and in three days I get to swim with Laura, and in four days I get to swim with Laura!!" That's her swimming lessons instructor. "You got it!" I said. She just beamed from ear-to-ear. I think she's growing gills.

With radiation, swimming lessons, physical therapy class, physical therapy evalutation, chemotherapy, and a meeting with her rehabilitation specialist, I think we're going to have a full week. Rachel won't make it to school everyday just because of "doctor" appointments. That's the way it goes. This should be the last week of radiation so next week will certainly be different!

Specific Prayers:
~That Rachel's platelets rise on their own.
~That Rachel be able to have both types of chemotherapy this week.
~That Rachel's counts not drop below 1000.
~That Rachel not catch any of the sicknesses going around.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure!!

GIVE US A FIX IN 2006!!!

Wednesday, October 4, 2006 7:03 AM CDT

Rachel has been to school both Monday and Tuesday!! WOO HOO!!! She's not excited, but Mom is! Tee hee!! She was pulling lots of reasons out of her bag for not going to school Monday morning. I finally told her that if she was too tired, sick, whatever to go to school that day, then she was also too tired, sick, whatever to have physical therapy in the pool that afternoon. Funny how the excuses stopped immediately. All I heard was a sigh of resignation and then the complaint that school was too long. I believe that! I'm sure she's tired by the end of the day but besides homeschooling, nothing is going to change that. She also chimed in about the bus ride being too long. "I'm picking you up after lunch to go to radiation so you'll only be in school for a half-day and you only have to ride the bus TO school NOT home." "Oh." Yeah ... oh. :-)

Rachel's doctor recommended that Rachel start a pool therapy program PLUS she wants her in regular therapy, too. The feeling is that since Rachel stopped doing therapy in the spring, that she's digressed. Rachel had her first pool therapy session on Monday. It's a group therapy class with only cancer kids in it. She had a lot of fun! Rachel's regular physical therapist is the teacher and Rachel LOVES her! Therapy through play is the name of the game. The only issue that Rachel is going to seem to have with this pool therapy is that she's short--a LOT shorter than everyone else in the class--and her therapist had to adjust the games to being in the shallow end so that Rachel could breath (guess she thought that was an important aspect).

Rachel will also have another evaluation done (on dry ground) to see where she stands with that right leg and ankle. She's going to end up in a splint at night if she doesn't start using that leg properly. Won't THAT be fun???? Oh, boy.

Radiation is continuing along just fine. Another two weeks it's looking like. She hasn't complained of any side pain now since the end of last week so that's VERY good! Rachel's cough has subsided although she's still congested. She's remained fever-free and all of her other issues seem to be resolving except that she now has diarrhea (and I didn't give her ANYTHING for her lack of stooling because I know how easily she gets diarrhea). Can't win, can we???

Rachel's counts are lowering from both chemotherapy and radiation. Her platelets have dropped to 35,000 from 95,000 just on Thursday of last week. Because of this, we have to go back into clinic tomorrow to check her counts to see if she'll need a platelet transfusion. No transfusions of any sort since March of last year and now BAM! let's get hit with needing both in one week. Sure hope this is only because she's getting both chemo and radiation and that when the radiation is over with that this doesn't become the norm.

Rachel did have chemo again yesterday, so we'll see how today goes. She's still sleeping and I will let her sleep until she wakes up on her own this morning. We were up last night with hail banging on our house. It lasted FOREVER! And it was BIG! It finally quit and then started up again 10 minutes later and again lasted FOREVER! It's going to be interesting to see if any damage was done. We were waiting for windows to be broken. Guess this calls for a good walk around the house and Mark will have to get up on the roof to check things out up there. After that pounding I'll be amazed if the shingles are still looking like they should be. Nothing that can't be fixed, though, if need be. The trees are pretty stripped of their leaves now.

I've continued to meet people this week who follow and pray for Rachel. It's been SO unusual!! I want to thank each and every one of you who prays for Rachel all around the world. We know that we can't meet everyone and thank you in person, but it sure is fun to meet those that we can! Each one of your prayers bombarding heaven is making a difference and we know that there is NO WAY that God can forget about Rachel when she's constantly being brought before him in so many petitions. May God richly bless each and every one of you who pray for Rachel. Please know that we greatly appreciate each prayer. It's so comforting to know that we're not alone when we beg for healing.

Specific Prayers:
~That Rachel's platelets don't drop any lower.
~That Rachel's diarrhea cease but that it not become constipation.
~That Rachel's congestion end.
~That Rachel have energy and feel good.
~That Rachel continue to not have any nausea.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of cure!!!!

GIVE US A FIX IN 2006!!!

Sunday, October 1, 2006 10:25 PM CDT

I want to start out by thanking those of you who came up to me this past week and asked if I was Rachel's Mom. What a treasure to meet FOUR different women THIS WEEK who have followed Rachel and prayed for her for a long time even though they had never met her. The pediatrician's office (we were there for Blake), the hospital (Rachel was getting blood), the parking lot (leaving the hospital), and at a restaurant (we were out for Lance's birthday) were the places that I learned of more prayers for Rachel. I've NEVER had four people in one week before! Generally it's one here or there and it's generally at the hospital. Thanks for going out on a limb and asking. May God richly bless each and every one of you.

Rachel's chemotherapy was uneventful on Thursday. Her counts that day did show that she needed a blood transfusion (radiation can take counts down), so Friday morning Rachel received her first red blood cell transfusion in over six months. Kind of a bummer, but what do you do.

Rachel has had no nausea with her chemo, again against the odds. She didn't feel very good on Friday although she couldn't really say what was wrong. She was tired, crabby, and just out of sorts. Friday late afternoon (EXACTLY 20 minutes before I was to host a birthday party for 9 children) Rachel did run a fever. When I called the doctor they agreed with me that I could give her one dose of Tylenol and let me get through the birthday party that was minutes from happening. Thank goodness her temperature went down and never went back up again.

Rachel has once again not stooled since Thursday and her bottom is all broken out. I'm really hoping that this is all from the antibiotics, which I'm jumping up and down to tell you are all done!!!!! WOO HOO!!!!! Happy dance, happy dance. I get to go to bed tonight!!! Should be there now, shouldn't I???? :-)

Rachel hasn't complained of any pain in her side this weekend, but something in her mouth is bothering her. I can't see anything but we're keeping an eye on it. Also, she had a tiny bloody nose today so we're keeping our eye on that, too.

We're hoping that things will go uneventful tonight and that she'll actually be able to attend school for a couple of hours tomorrow morning! Wouldn't that be wonderful!! I will have to pick her up at lunch time as she has radiation and then she's starting physical therapy in the pool up at the hospital. Rachel's oncologist is thinking that Rachel will probably need more than the pool, but since she loves the water so much it's a great way to get her back with her therapist being that this class is being offered. The oncologist wants Rachel to have a full evaluation done again by her therapist as she feels that Rachel has deteriorated more in her ankles. SHOOT!!!! I'm beginning to think that Rachel's going to end up in braces at bedtime. She's NOT going to like that!! We'll see ....

Although Rachel still has a plugged up nose, overall everything else seems to be coming along. A few minor irratating things, but nothing we can't deal with. She will continue to have radiation all of this week and will have chemo once a week up at the hospital.

Specific Prayers:
~That Rachel's counts remain normal so that no transfusions or hospitalizations are needed.
~That Rachel remain fever-free.
~That Rachel not have any skin burn from radiation.
~That the radiation totally get rid of the tumor so that it never comes back.
~That this chemo totally rid Rachel of all her cancer.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be granted the miracle of a cure!!

GIVE US A FIX IN 2006!!!!!

Thursday, September 28, 2006 6:33 AM CDT

We are starting a new chemotherapy regimen today. We will be at the hospital all day between chemo and radiation. I have a feeling I'm going to be tired of playing board games! There's no way she'll let me quilt.

In choosing chemo drugs, we really felt like we were caught between a rock and a hard place. There just isn't anything out there that's proven for Ewing's at this stage in the game. She's already done everything that is considered "standard protocal" for her cancer. We're way beyond that now. We've decided to take a whole new approach to this and rather than give her toxic drugs that attack the tumor, we're giving her ones that are supposedly less toxic (is a drug ever NOT toxic?) and that target the blood supply to the tumor. This is called anti-angiogenisis and is becoming the new "rage" in the fight against cancer. We'll see. One of the drugs that we're going to use has some risks with adults with lung cancer. There has not been shown to be those risks with pediatric patients but is that because they aren't there or are they just not documented? I mean, there's NOTHING on it. Rachel doesn't have lung cancer but she does have cancer in her lungs. So, we forge ahead because we've talked to many people who have been on it or who have had their children on it (oh, the power of the internet and email) and only one has had any issues with it. Pray that Rachel doesn't! Also, one of the drugs is supposed to work with radiation in shrinking the tumor faster.

We are seeing improvement in Rachel. Her pain is defineately less and we're not seeing the tumor sticking out of her anymore. She's sleeping all night and staying in her own bed, her fevers have ceased, her cough is decreasing, and I think she's down to using a half a box of kleenex a day rather than a whole one! I was actually hoping to send her to school today but the long chemo session scheduled changed that. We're aiming for Monday now because there will be a substitute teacher in her classroom on Friday and that just wouldn't be the best situation for anyone involved. Monday is hopefully the day!

Rachel is still on her IV meds and will continue them through Sunday ... at least there's an ending in sight. She's been on them for two weeks now. Ugh. Every eight hours she's been hooked up to meds for 1 1/2 to 2 hours at a time. Fun, huh? She'll be happy when it's over.

Lance is about ready to burst because his birthday is Saturday. We're having a birthday party for him on Friday at the movie theater (easy, cheap, not much planning ... Mom REALLY likes that!). He is so excited that he's hard to contain the last couple of days. Oh, to be turning eight. Remember eight? What a GREAT age! Somewhere between being a baby and being a teenager. Somewhere between being small enough to get on the little rides at the fair and ride with your sister, yet being big enough to get on the big rides and ride with your brother. Eight is having the best of both worlds. Eight means being able to stay home by yourself for short periods of time yet still needing a babysitter for longer periods. Eight means bathing by yourself but still needing reminders to clean your ears and clip your fingernails. Eight means really being too big to fit in Mom's lap, but still trying daily to do it. Eight ... what fun!

Onward we march into unknown territory. Onward we go into uncharted waters. Onward we go ... One foot in front of the other praying that we have listened correctly for the answers we so desperately seek. Praying that this will be the final phase in Rachel's cancer and that it will leave her cured even against all the odds. Onward ... trusting, believing, hoping. Onward ... knowing the window is shrinking right in front of our eyes and trusting that it will be flung wide open. Hoping. Hoping. Hoping. Onward.

Specific Prayers:
~Thanks and praise for leading Mark and Jodi to a decision.
~That Rachel tolerate the new chemotherapy well without any bad side effects.
~That Rachel's tumor be totally obliterated by the radiation and chemo.
~That Rachel's lung tumors vanish with the new chemo.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure!!

GIVE US A FIX IN 2006!!!

Tuesday, September 26, 2006 11:00 PM CDT

Radiation is moving along smoothly, so far. Rachel has been pooping and scans show that she is much emptier in her bowels than before! YEAH!! Yes, I know I can ask for strange prayers, but our God is a BIG God and can deliver anything He so chooses to ... including poop! :-)

Rachel is still having pain on her left side where her tumor is, but it isn't as much as before. She was actually maintaining pain control with just Tylenol for two days, but this afternoon she asked for morphine again. Hopefully we'll see more improvement in pain by the end of the week as the radiation really kicks in and hopefully shrivels that tumor to NOTHING!!

On top of having two bacterial infections, Rachel also has the crud. She's all stuffed up and has a terrible cough. They checked for pneumonia yesterday and that has yet to develop. Whew! This evening she started complaining about a sore throat, too. Mommy is having the sinus congestion with sore throat, too. I knew that would happen because I'm totally lacking in sleep from giving IV medications and research. When I'm sitting in the doctors office in one of their wonderful chairs and I'm fighting the head bobs, you know things are bad! I'm the person who can ONLY sleep IN my bed, curled up on my right side. Finding me alseep in a chair just isn't heard of. So falling asleep sitting up in a doctor's office totally says something about my lack of sleep.

Rachel has yet to be back in school and a chemo regimen still hasn't been decided upon. Hopefully Rachel will make it back yet sometime this week, and hopefully there will be a decision made tomorrow!

Thank you for your continued prayers as we traverse this new rocky road.

Specific Prayers:
~That Rachel's tumor shrink completely with radiation.
~That Rachel's congestion heal quickly and not turn to pneumonia.
~That Rachel's pain cease.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~For discernment regarding chemotherapy treatments.
~That Rachel be given the miracle of a cure!!

GIVE US A FIX IN 2006!!!!

Sunday, September 24, 2006 0:08 AM CDT

We met with the pediatric radiation oncologist on Friday morning. She told us that the only organ that was going to be affected by radiating the tumor would be the left 1/3 of Rachel's left kidney. There would still be a little more of the kidney that would get "splatter" from the radiation, but only about 1/3 of the kidney would be toasted. She said that within the radiation protocal, you are "allowed" to radiate one entire kidney plus 1/3 of the other kidney and still expect to have renal function. She said, "If Rachel would have issues with her right kidney when she's sixty and it shut down, her left kidney would probably not be able to give her the renal function that she would need because 1/3 would be totally gone and more than that would have gotten splattered so she'd have to have dialysis." As Mark said, "Hey, at least she's talking about Rachel getting to sixty and not the doom and gloom and we keep hearing about." She did say that this isn't curative because she's got tumors in other areas (we are quite aware of that) but she's also planning on obliterating this one to kingdom-come so that it completely goes away and doesn't come back.

Being that 1) surgery isn't an option right now; 2) that chemo wouldn't work fast enough; and 3) only the left 1/3 of one kidney would receive the total dose and no other organs would be affected, Mark and I decided that there really was no other choice and opted for Rachel to start radiation. With that said, Rachel was immediately brought over into their staging room and x-rays and CT scans followed so that they could make a radiation plan. An hour-and-a-half later after starting the staging, we walked out of there and went over to the hospital (the radiation clinic is across the street at Abbott Northwestern Hospital--it's part of the Virginia Piper Cancer Institute for those of you familiar with it). We found out that Rachel has ANOTHER bacterial infection and they started another antibiotic. We also found out that Rachel is FULL of stool and they gave her multiple things to get her moving.

Rachel continued to be on morphine for pain and also continued having fevers yesterday. After being at the hospital for several hours, Rachel did poop! Yippee!! She hadn't done that since Monday which is VERY unusual for her. A theory that's being tossed around is that because Rachel is backed up (VERY unusual for Rachel who tends to have diarrhea and NOT constipation) is that it's so backed and has her bowels so full that it's pushing against the tumor and making it hurt. I have to wonder about the "coincidence" of that.

No doctor wants to treat just one area of tumor when there are tumors in other areas. Having them do surgery or radiation in one area when another area has tumors just isn't done when there's been a recurrence and they believe there's no hope for ever getting rid of all of it because they can't re-radiate the area of the disease is too extensive for the surgeon. Believe me, it's not done. For initial diagnosis they will but not for recurrence. Unless, of course, an area is bothering a patient then they will do it for palliative reasons. Funny how Rachel became constipated--our child who just DOESN'T get constipated--and they are wondering if the constipation has led to the tumor pain just at the time that we're needing to make some major decisions. No one seems to want to treat just her lungs while other areas still have tumor. No one wants to treat her other area of tumor because she has it in her lungs. Chemotherapy is the only thing that's been offered. Any mention of surgery or radiation has been poo-poo'd. Now that she's got pain, they're jumping to take care of that spot. We get rid of this spot and we should only be dealing with what's in the lungs. We're kinda liking that. :-) Funny how she's constipated.

Not only that, but within hours of Mark and I making the decision to do radiation, Rachel poops. Coincidence? I'm not real big on coincidence ...

Rachel started her radiation treatments late yesterday afternoon. Last night she was running a temperature of 103 degrees. Being that she had already had blood cultures done that afternoon and had started more antibiotics, I didn't call the doctor.

Saturday morning we went in and had another radiation treatment done. Rachel wanted morphine this morning, but that's the only time she's wanted that strong of pain medicine. Over the course of the day, she's only complained of her side hurting twice and has only wanted Tylenol both times. She's pooped a couple of times today, too. So, between pooping and radiation, her pain level is decreasing. Her pain is defineately her tumor, though, and not abdominal pain. She wants me to rub her tumor all the time. She says pushing on it hurts, but rubbing it makes it feel better. Along with heat ... LOVES that heating pad.

Rachel's fever has been anywhere from 99 degrees Saturday morning to 101 degrees late Saturday afternoon. Her pain level is better so she actually feels better, and she's not 103 degrees so she actually is doing better than she has been. Still not normal Rachel by any means, but MUCH better than the two days before-hand.

Rachel will now have radiation treatments every Monday thru Friday for the next three to four weeks. Yikes! We've scheduled it so that her treatments are in the afternoon so that she doesn't miss the literacy portion of her school day. She'll miss phy-ed, music, art and all those classes that she loves so much, but literacy is just something that she can't miss a month of! Maybe I'll have to con her music teacher (a very good friend of mine) into coming over and giving one-on-one lessons ... you know, bring those fun instruments over and march around our house singing silly songs! Yeah, I'm talking about you, Carol!! :-)

Rachel's first-grade teacher has already made her an adorable "homework bag" and filled it with everything Rachel will need to do homework with (crayons, scissors, pencils, pencil sharpener, glue stick, etc.) and sent it home with Lance with some homework for Rachel to do. Rachel spent HOURS organizing and reorganizing that thing! She LOVES it!!! She also thinks she's super cool because she has homework to do. Thank you, Miss Tyler, for your thoughtfulness! I think it's going to work wonderfully!!

Considering everything, I think we're doing as well as we can be given the circumstances. We will probably be making a decision about chemotherapy over the next couple of days and get that started this week along with the radiation. Rachel will continue on IV antibiotics (two of them) every 8 hours. That's a pain, but we'll do what we have to do. We thank you for your prayers as we know that's the only thing that has gotten us to this point.

Specific Prayers:
~That Rachel's tumor completely melt away with this radiation and never come back.
~That Rachel's left kidney receive minimal damage.
~That Rachel empty her bowls of poop over the next two days.
~For discernment for Mark, Jodi, and Dr. Bendel concerning chemotherapy for Rachel.
~That Rachel be given the miracle of a cure.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.

GIVE US A FIX IN 2006!!!!

Thursday, September 21, 2006 11:33 PM CDT

Ever feel like you've ran straight into a brick wall and as you back away from that wall feeling bruised and dazed you run smack dab into another one? Then, as you look around you, you realize that brick walls are rising as you watch and are beginning to box you in? Yeah ... that's how this week has gone.

Rachel started with side pain on Monday night. We gave her Tylenol and a heating pad and she was fine for the night. She got up Tuesday morning doing great and she went to school. Tuesday night, she started complaining about pain again. More Tylenol and the heating pad and she was again fine for the night. Wednesday morning she woke up and had side pain. Gave her a dose of Tylenol and she said she was fine and went to school. At noon that day, there was a phone call from the school nurse saying Rachel was there complaining of side pain. Great. By this time, I had already been in contact with medical officials about this side pain but there were no answers and it was something we were to watch. Now that I was getting a phone call from the nurse, another call went in. I picked Rachel up from school and went into the clinic for a urine test. Got more Tylenol into her and she decided that she still wanted to go to swimming lessons ... so we did. She LOVES swimming lessons!!!

After swimming lessons I gave her more Tylenol and within two hours she was having break-through pain. A call went into our home-care pharmacist and it was decided that her platelets were high enough to give her some Ibuprofen. She went to bed with her heating pad but ended up having a bad night. This morning I took her into the clinic right away due to pain and fever. Many lab tests were done, x-rays were done, and scans re-scoured. The conclusion is that one of Rachel's tumors has grown rather quickly over the last ten days and is now causing her pain in her left side right at the bottom of her rib cage. It's pushing against muscles and causing pain issues. We are now even able to see it with the naked eye pushing slightly outward from her ribs. That is brand new. :-(

The tumor isn't new, just being able to see it is. This makes things much more urgent. We now need to move VERY promptly. No rest for the weary. The doctors feel that chemotherapy isn't going to work fast enough to give Rachel the pain relief she needs. She is now on morphine at home and is continuing to have fevers, too. I've already had to up the amount of morphine to keep her out of pain (this is normal as your body does become accustomed to it and it takes more drug to keep you out of pain). I've got both oral and IV morphine now at home.

We have a consultation with the radiation oncologist tomorrow (Friday) and one with the surgeon on Monday. One of the surgeons we know reviewed Rachel's scans today and said the the tumor is growing into muscles and deep tissue of her back and chest and the only way to do a complete removal of the tumor would be to remove muscle, tissue, and ribs and probably have to make a muscle flap(s) because it's in an area of supporting muscles. It would be an extensive surgery and she could have some debilitation from it and that it would take a very long time to recover from it and that she wouldn't be able to do chemotherapy while she was recovering. Wonderful. Just wonderful.

So, we already have treatment set-up times and radiation scheduled for tomorrow even though we have no idea what's going on. It's very freaky, very premature, and very mind-boggling. We have no idea what's going to happen tomorrow, but they said it's easier to have it already booked and then we cancel it then it is to have us decide tomorrow that that's what we're going to do and then try to find room for her.

Rachel's oncologist feels that radiation is our best bet to give Rachel the fastest pain relief. They are hoping that with just a few treatments of radiation that they'll be able to shrink the tumor to a size that is no longer causing her pain. We'll see what the radiation oncologist has to say tomorrow. It's very scary.

We're getting closer to a decision about which chemo to do, but we're not there yet. I spent HOURS on the phone tonight with Rachel's oncologist. We sat at our respective computers looking at studies and what-have-you together. Scouring medical journals and feeding off of one another and adding ideas to the pot and nixing others. Mark and I will probably be making a decision within the next day or two about chemotherapy. We will have to make a decision about radiation tomorrow morning.

It's always like that. Things are going smoothly and then something happens and BAM! you're expected to make decisions about life-threatening events when you have no idea of the outcome. And you're supposed to make them RIGHT NOW!!! Thank you very much. You know, I'm tired of this. I'm just really tired of this. I'm frustrated. I'm angry. I'm tired. Yet onward we'll go. One foot in front of the other. I just wish there was a trail already blazed for us. But, we're trespassing in uncharted waters. There just are no roadmaps for this area we're in.

So many Ewing's patients don't live past their first treatment regimen. Then, to have a recurrence and keep beating the odds and beating the odds and beating the odds just isn't heard of a lot. I'm happy to say that Rachel certainly isn't the first one to do so, but she's one of the few. There are way too many Ewing's patients no longer alive ... especially those who have recurred. Therefore, there are no proven drugs that work because they just haven't been studied because the numbers just aren't there to do so. So we punt. We guess. We pray like mad. We ask for direction. We pick every brain we know of. We pray some more. And we go with our gut. Sometimes I think my gut is more connected to God than my head is! Those gut feelings so often seem to be God talking. Our guts haven't spoken yet. We hope they hurry up.

Specific Prayers:
~That Rachel's pain be controlled.
~That Rachel's fevers cease.
~That all of our fears subside.
~For protection and discernment for Mark and Jodi when it comes to difficult decisions and difficult discussions with the radiation oncologist.
~For discernment for Mark and Jodi about chemotherapy plans.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure!!!!!

GIVE US A FIX IN 2006!!!!!

Monday, September 18, 2006 6:39 AM CDT

The exhausting research continues. I thought I'd share with you part of an email that I wrote to Rachel's doctor after she shared with me something that another doctor told her. For any of you who have also been questioning, I think this tells our position rather well. By the way, Rachel's doctor's response to this was that she agreed with us and that "I have always respected the medical decisions that you have made for Rachel. You and Mark have done an amazing job supporting Rachel."

"We have to research every avenue. We can not stop at a detour just because there's a sign there. We have to push on through it until there is solid evidence of the road being totally washed away. As you already know, we will go to all ends of the earth if it means keeping Rachel around. We're tired. We're tired of this life. We're tired of this monster constantly trying to get the upper hand. But we won't give up. We can't. The word palliative isn't in our vocabulary. We don't like that word. That's a "we've given up hope" word. And that's something we have yet to lose. We know that if we talk to 25 doctors they will probably all look at the floor and shake their heads and think we're delusional for still hoping for a cure. But, we've had that already--as a matter of fact, we're beginning to get pretty used to it. Our daughter was supposed to be dead a long time ago. If we talk to 50 doctors they'll all do the same thing. If we talk to 100 doctors they may all do the same thing. But what if one of them, just ONE of them says, "I've got an idea .... What if we tried this ...." THAT'S what we're looking for.

We still remember (and will NEVER forget) sitting down at Mayo and being told snottily and emphatically, "No one will blame you if you just do chemo and let her die quietly." There is no dieing quietly. Not for this family. If Rachel dies, she will go out with a huge bang ... not because her family gave up and wouldn't buck the numbers or the opinions layed out in front of them. Not because her family accepted palliative. Not because her family accepted that they couldn't beat the odds. Not because we didn't try one more thing or search out one more area or talk to one more person. IF Rachel dies, it will be because God called her home. It won't be because we didn't try.

If Rachel was in a lot of pain, if she was paralyzed, or if she couldn't live in the state she was in, then we'd be talking palliative. She's not there. And if Spring 2005 didn't teach us anything about the power of prayer, then nothing will. We're still praying for a cure. We're still looking for one. As long as we're alive and breathing, and as long as Rachel is alive and breathing, we will fight for one. She's planning on making us a grandparents, you know. ;-)

Maybe we're delusional but we don't think so. We're pretty planted in reality and what our odds are. But for there to be odds, someone has to make it! Why not Rachel? Who are we or anyone besides God, to tell us Rachel can't or won't be there? Maybe it doesn't look good. Maybe things are deteriorating. Maybe the odds continue to get smaller. But she's still here. She's still here. And with a quality of life. She's not some vegetable laying in a hospital bed. She's a six-year-old little girl going to school and having swimming lessons. We can't turn our backs on that. We just can't.

So, we turn over every rock and see if we can make it work somehow. If it doesn't, we go onto the next rock. Ultimately we still may lose her ... or not. No one on this planet is in any state to make that judgement. We continue to wait and trust in God. We wish He'd hurry up but He's never worked on our time schedule. And so we wait. And trust. That's what faith is.

For now, these are the things and feelings that are going through our minds. We hate this position that we're in, but we're here. And we won't go down without another hell-bent fight. We will always be hopeful, even in the face of exteme adversity ... it's our job."

Specific Prayers:
~For the miracle of a cure for Rachel ... right now, PLEASE!
~That Rachel's bacterial infection be cured quickly.
~For discernment for Mark, Jodi, and Dr. Bendel concerning new treatment for Rachel.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~Let's pray for that miracle of a cure one more time!

GIVE US A FIX IN 2006!!!!

Thursday, September 14, 2006 10:31 AM CDT

One of Rachel's doctors called and Rachel has a bacterial infection. Antibiotics were started yesterday while she was at school. I guess school is no longer a "safe" place. I had to go in and access her port (put her needle in) before the nurse came. What a rig-a-ma-roll that was to coordinate all of that, but it gone done. Today I have to go back in and give her meds at school again and another nurse is coming while I'm there to draw blood. After I hook Rachel up, she'll go back to class and then an hour later I'll unhook her. Because these IV drugs have to be given every eight hours, no matter how we figure it, she has to have it done at school. She'll probably be on the drugs for ten days.

Well, the CT scan and the PET scan are in but I have yet to see anything on the MRI--very unusual; maybe today. As far as the CT and the PET are concerned, we did not get the news we were hoping to hear. We didn't even get a little bit of what we wanted. Both the CT and the PET are conclusive in that things have progressed further--her tumors have grown.

According to the reports, there has been an overall increase in the size of her tumors compared to last scans. There are no new tumors. The tumors that have grown are a couple in her lungs, one next to her kidney, and one in her abdomen. All other tumors are stable.

This just isn't what we wanted at all. We are now back at square one. Back at the drawing board. Back to researching and scratching our heads. Back to head shaking and confusion. Back to disbelief and frustration. Our hearts and stomachs are once again in our toes and we feel like vomiting. We sit with gaping mouths, while shaking our heads and not being able to speak. Audible intakes of sharp breaths, inaudible groans exploading through the fibers of our minds.

Rachel told Mark a couple of days ago that she doesn't want to do chemo anymore. She doesn't like it. Ditto that about a million times. Yet, chemo we will do. More treatment plans are being thrown around and researched. Many that will make her sick and make her lose her hair. Which way to turn? Where to go? What to do? Why can't we seem to get a handle on this monster? Life will change, once again.

I want to scream. I want to swear. I want to stick my head in the sand and dream that it all went away. I want to walk away and pretend that it's not there. I want to cry and be held by my mommy. I want a bandaid to make it better. I want it to go away.

Specific Prayers:
~For Rachel's understanding and acceptance of the situation.
~That Rachel be happy for who she is, even if she is different from everyone else in her class.
~That Rachel's bacterial infection be healed quickly.
~That Rachel have no more fevers.
~For discernment for Mark, Jodi, and Dr. Bendel about treatment options for Rachel.
~That Rachel not have any long-term side effects from radiation, chemotherapy, or surgery.
~That Rachel be given the miracle of a cure in 2006!!

GIVE US A FIX IN 2006!!!!

Tuesday, September 12, 2006 3:09 PM CDT

Rachel had an MRI and a CT yesterday. I took Blake to piano lessons at 4:00, picked up Rachel and Lance from the bus at 4:20, and then brought Lance to piano lessons (his first one so Rachel and I went in, too). After the first 10 minutes or so, we all went out to the truck and sat there for 15 minutes at which time I went inside to get Lance. Rachel was doing fine and playing with Blake the entire time we were waiting for Lance. When I walked back out to the truck with Blake, Rachel was laying in Blake's lap complaining of a headache and Blake said she was warm. In the scope of 5 minutes, Rachel went from just fine to having a headache and a potential fever. The life of a cancer kid.

We got home (the little country church the boys take piano lessons at is less than a mile from our home) and I took Rachel's temperature and sure enough, it was 101.7 degrees. A call went into the doctor. He said to just give her Tylenol and to watch her. He said to call if her temp went back up and to come into the clinic over the next day or two to check her blood counts. Her temp went down and she felt good the rest of the evening.

This morning, Rachel had a PET scan. Afterwards, we went to the clinic and had blood counts and cultures done. She's remained fever-free, but they chose to give her a dose of antibiotics anyway. Hopefully that will save us a trip to ER if she should spike a fever tonight. Needless to say, she missed the entire day of school.

Nothing was back yet on her scans from yesterday. I'm not expecting anything from today's scans until at least tomorrow and maybe even Thursday but I really thought yesterday's would've been done. Rachel's doctor said she will bug the radiologist and hoped to have some results for me tonight. Would be nice. :-)

Specific Prayers:
~That Rachel remain fever-free.
~That Rachel's scans be CLEAR!!!!
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure.

GIVE US A FIX IN 2006!!!!

Thursday, September 7, 2006 2:31 PM CDT

I know, I know, I know!!! It's not that I haven't been thinking about it! But, good intentions don't mean anything unless there's follow-through. I know! I know! :-)

Where should I start? Where we left off, I guess. Rachel LOVED her swimming lessons and was doing very well by the end of the week. We've got her signed up for more lessons on her weeks off of chemo. She's SO excited!

Rachel got to meet her teacher, she's had friends over to play, we had open house at all of the kids' schools, and Blake and I started Firearms Safety Class. Blake wants to hunt with Mark this year but he needs to take this class to be able to get a hunting license. The first night a parent had to attend the entire night with the student. After sitting through that night and seeing all of the adults who were actually taking the class, I knew it would be a good class for me, too, as I didn't start hunting until after I was married to Mark so I'd never taken the class. There's a lot of homework with that class so it's keeping us busy.

I've also been crazy busy writing 60 to 100 page proposals (depending on which one you're looking at) for the insurance company and the hospital in New York. We're still battling with them over THAT enormous bill. I'm now on my second million page proposal to the insurance company. I know I'm going to end up doing a face-to-face presentation with them at some point. Ugh!

Chemo started last week Monday and things have been going smoothly. The kids started school on Tuesday and I think by Rachel's picture you can tell how darn excited she was! She could hardly wait!!! It's put a change into the chemo schedule but we're managing. Pretty much Rachel gets off of the bus and her home health care nurse drives up into the driveway. She doesn't get any time to breathe. Oh, well.

We went to Duluth over Labor Day weekend. We stayed in a hotel overlooking Lake Superior and went to Split Rock Lighthouse, Gooseberry Falls, drove over the lift bridge and walked on the beach, watched several huge ships come into the harbor, toured ships, and lots of other "tourist" attraction things. The kids loved it!! Mark and I also celebrated our 17th wedding anniversary while there. The kids thought that was awesome being able to spend the entire day that was our anniversary with us. They kept making us kiss and asked a billion questions about our wedding day and pretty much kept Mark and I giggling with their antics. It is interesting how kids equate "if Mom and Dad are okay then everything is right with my world".

The day before our anniversary, my Dad called to let me know that his girlfriend was now sporting a big old fancy-dancy ring and that there will now be another wedding in my family next spring. Life just keeps changing, doesn't it? Wish it would slow down a bit and let my stomach settle before it started spinning again. So, my best friend's mom will now be my step-mom. That means my best friend will now be my sister. How wierd is that?? It's a fourteen-year-old girl's biggest dream come true is what it is. Who didn't wish at that age that their best friend could be their sister because then you a) could be together all the time; b) could share clothes easily and all the time; c) would then hopefully not have to have the sister you already had! But, as I already told Jahna, "I'm not sure I want to be your sister ... sister's fight." She promised me that we wouldn't. We'll see what kind of Christmas present she gets me ....

Rachel was very excited for school to start but Lance wasn't. Because Lance wasn't, Rachel was confused as to whether or not she should be excited. It was kinda funny to see her struggle with that one. I could just hear the gears in her head turning, "I'm excited but Lance isn't. Shouldn't I be excited? Maybe I shouldn't be excited. But I AM!!! Oh, but maybe I shouldn't be." I finally told her one day that even though Lance wasn't excited, it was okay to be excited. I told her that I was excited my first day of First Grade.

On that first day, I asked her if she was nervous. "No. Should I be?" Too funny. I know I was!!! I think I cried when my Mom left (I walked to school so she walked with me). The crying didn't last long though. Never does.

Rachel has a doctor's appointment tomorrow (Friday) to make sure that she's healthy enough to be sedated on Monday for scans. She has a MRI and a CT scan on Monday and a PET scan on Tuesday. We're anxious to know the results! :-)

Specific Prayers:
~That Rachel continue to feel well during chemotherapy.
~That Rachel's counts stay high.
~That Rachel's scans come back CLEAR!!
~That Rachel have no long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure!!!

GIVE US A FIX IN 2006!!!!!

Tuesday, August 22, 2006 10:52 PM CDT

Rachel wanted to do swimming lessons again. This is her off-week from chemo so we're back at the pool! She's loving it and is smiling from ear-to-ear the entire class time. She's doing QUITE well and is actually SWIMMING!!!! It's obvious to her instructor that Rachel has been to the pool a few times this summer! YIPPEE!!!!

We went to a family reunion this past weekend and got to see both of my grandma's and many of the family members from my mom's side of the family. It's so good to reconnect with everyone and see how all of those kids have grown!

A family friend passed away yesterday morning from cancer. This one is hitting hard as it brings back everything we went through just a year ago with my mom. My mother was one of three women with cancer in her close-knit neighborhood. Now all three women are gone. You know, cancer sucks. It REALLY sucks.

Rachel's meeting with her teacher is on Thursday, chemo starts on Monday again, school starts in two weeks and scans are being scheduled for the week after school starts. Rachel's doctor is now asking for a decision regarding the drug that has been recommended to add to Rachel's treatment plan ... we still don't have one.

Rachel asked to go to the chiropractor tonight, so I guess we'll be headed there tomorrow. Lance either badly sprained or broke a toe this past weekend so he wants to go to the chiropractor, too. It's kinda funny when your kids ask to go to the "choirpractor". :-)

SPECIFIC PRAYERS:
~That Rachel continue to feel well.
~That Rachel's counts remain high.
~For discernment regarding adding another drug or not to Rachel's treatment.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of cure.

GIVE US A FIX IN 2006!!!

Tuesday, August 15, 2006 7:52 AM CDT

Add another one to your numbering, Mavis! Tee hee!!

Actually, I typed up an entry yesterday and then my computer froze! Oh, I HATE that! I was so disgusted when I ended up having to reboot the entire computer. By the time that was done Rachel's nurse was here for chemotherapy and life continued on without a journal entry being made.

Last week Tuesday, we ended up going into clinic after Rachel decided that she could only eat half her lunch because her tummy hurt and she was cold. Cold? Uh, NO! No, no, no, no, no!!!! She had crawled up on the couch because she didn't feel good. She said she didn't have to go to the bathroom and she just wanted lots of blankets. NO!!! I got the thermometer and had just finished taking her temperature (99 degrees) when in walked her nurse. He took one look at her and said, "She doesn't feel good." A call went into Rachel's clinic nurse who told us that being that Rachel had positive blood cultures for a bacterial infection that we needed to get her into the clinic to be seen. Her nurse said that she was 98% sure that she was over-reacting, but there was that 2% that said "these kids can turn on a dime". The nurse at home said that her bowels were hyperactive for some reason and that was probably why her tummy hurt. Rather than hooking up chemo, he hooked up her antibiotic and I jammed the chemo in my purse and took off for the clinic. By the time we got there, Rachel was looking and feeling better and by the time we were half-way through with our clinic appointment, Rachel was running around dragging her medicine pole behind her! Uh, you're attached to chemo ... you're supposed to be sick! Tee hee!!! By the time the doctor listened to her bowels, they were no longer hyperactive and Rachel wasn't complaining of being cold any longer, either. Whatever it was passed and we got our clinic visit in earlier than expected last week.

We always have to go in at least once to the clinic to see the doctor during each chemo round. We were supposed to go in on Friday, but cancelled that trip because we were in on Tuesday. Things have been going fine ever since.

We are getting things ready for school. Today I hope to take the kids school shopping ... ugh. Not exactly my favorite thing to do. Rachel is very excited about school and meeting her new teacher. She found out that she gets a time to meet and talk with her teacher ALL BY HERSELF! No mommy! She's VERY excited. Actually, it's an evaluation time that her teacher uses to see where the kids are for reading, writing, etc. and uses it to get to the kids one-on-one. I get to sit in the office during this "meeting". Rachel was ear-to-ear smiles when she found out that she gets to do it by herself!

This is going to be unchartered territory for us as we now deal with all-day school and chemo schedules, gym class and low platelets, bus schedules and vitamin therapy. I was so glad when she was but a toddler with cancer that we didn't have to deal with the school issues on top of everything else. The missed days for scans and chemo or being in the hospital, the tutors at home and school to keep the kids up-to-speed, the homework and testing while they felt horrid ... I was SO glad we weren't dealing with that, too. Now we are. Hopefully God will grant Rachel that miracle of a cure this year and we won't have to deal with too much missed school for any reason and we won't need a tutor and we won't be worrying about catching- or staying caught-up. Those avenues just don't sound like much fun.

Thank you for your prayers for my grandmother. She is now back in her apartment at an assisted living community. She's doing well and although she has some pain, it's minimal compared to what it could be. We're all very happy that she didn't have to go into a nursing home at this point. Thank you again for your prayers.

Specific Prayers:
~Thank the Lord for Jodi's grandma's recovery.
~That Rachel continue to feel well and that her counts remain high.
~That Rachel not have any long-term side effects from chemo, radiation or surgery.
~That Rachel be given the miracle of a cure!!

GIVE US A FIX IN 2006!!!

Sunday, August 6, 2006 10:08 PM CDT

Well, well, well .... it's been "one of those weekends".

Friday started out with us at the hospital for Rachel's dental surgery. Our dentist was very pleased with how well the surgery went, and was very excited about the fact that she didn't have to remove any teeth ... just put in three crowns, fill a few cavities, seal the molars, and do a really good cleaning!

As usual, before Rachel's eyes were even open she was croaking for her mommy. There is absolutely no way to calm her except for her to be in her mommy's arms. Many parents never even see the inside of the initial surgery recovery room ... I've seen them at each hospital she's had surgery at! I even get rocking chairs pulled up to the bedside. Silly girl ... or maybe SMART girl!! :-)

Once the kids are stabilized and coherent, they move them to another recovery area. There they get to watch movies, play games, eat popsicles, play with toys ... whatever their little hearts desire. Once there, Rachel had a popsicle but ended up vomiting it up. The nurse felt that maybe she just got some blood into her stomach during the procedure and this was the body's way of getting rid of it and it was probably a one-time deal. When Rachel asked for toast, the nurse was right on it and thought that it was a great idea. After eating a piece, Rachel threw it up. Medication was now given for vomiting.

Rachel was feeling better once the medicine took effect and wanted to try another piece of toast. While eating it, she complained that a piece was stuck by one of her "queens". Oh, too funny!! Crowns have now become queens!! She kept that piece of toast down and we headed home.

It was evident that Rachel wasn't feeling 100%. When we got home at 5:30 that afternoon, she wanted to lay in our bed and watch a movie. I put her to bed, started the movie, and she then complained that she was cold. Cold? No, please not cold. She rarely complains that she's cold unless she's coming down with a fever. No, please no fever. I covered her up and felt her warm forehead. Great, we need this. I got the thermometer and she was running a temperature of 100 degrees. Over the next hour, her temperature continued to climb and I ended up calling the doctor. Around 6:45 we were back on the highway headed towards the hospital.

When we got to the ER, Rachel's breathing was fast and more like panting (the doctor actually called it panting) and her temperature was over 103 degrees. They drew blood cultures and gave her Tylenol and an antibiotic. It took more than two hours from the time they gave her the Tylenol until we saw any difference in her. I'm thinking that the Tylenol wasn't enough and that the antibiotic needed to kick in and help, too, before we saw any difference. Rachel was feeling so rotten that she didn't want to leave ... she wanted to be admitted. Of course, I didn't want that! We just hung out in the ER until Rachel was up playing games with the Child Life Specialist that we know there. We crawled into our own beds after midnight.

Yesterday Rachel was complaining that her mouth, her teeth, and her throat hurt. She's telling everyone that the dentist had two hands completely in her mouth so that's why she has cracks in the corners of her mouth. Too funny!! I'm sure it does feel that way even if that's not exactly how it happened! I'm sure they did hold her mouth open quite wide (she has a small mouth) and that is why she has sores in the corners of her mouth. Obviously her teeth hurt because they were in there working on them. I know that my teeth can hurt after a good cleaning by a not-so-gentle hygenist! I'm betting her throat hurts because they had a breathing tube down it while she was sedated. Even Tylenol with codeine was doing nothing for her. Why should she be any different than a lot of us who think that drug is hyped up more than it should be? We didn't hear much complaining today about any of those things except the corners of her mouth which have large sores on them from being cracked open. I'm hoping tomorrow that the throat and teeth pain have totally subsided.

I learned while sitting in the ER that my grandmother had fallen and broke her pelvis (my Dad's mom ... she's 90) and was in the hospital. Mark and I decided that we would fly down to see her on Saturday being that Rachel was feeling well. I was putting on my shoes just before walking out of the house to leave when the phone rang. It was the hospital saying that Rachel had a bacterial infection and needed a different antibiotic and that this doctor wanted to give the first dose in the hospital--even though Rachel's had this antibiotic umpteen million times--because sometimes those first doses can cause the bacteria to spread throughout the system and the kids can get really sick. Hmmmmmmmmmmmmm ... never heard that one before but you do learn that some doctors are quite conservative and others aren't so much--you also learn which doctors are which! You pretty much know if you're headed to the hospital just by the name of the doctor on-call!

So, I continued to put my shoes on but we went to the hospital instead of to the airport. Rachel received her dose of antibiotics and two minutes before it was completely done, she started itching her head. The itching turned to scratching profusely at her head. Very quickly she was crying and scratching. She has never reacted to this antibiotic before. A dose of IV Benedryl was given and the itching quickly stopped.

Once returning home from the hospital, Rachel's temperature was elevated to 100 degrees. She remained there all evening and into the night. This morning she was nice and cool and she hasn't reacted to the antibiotic at all since that first dose as I'm giving it at home every eight hours. I really hate that 8-hour dosing because it means I only get a little over 6-hours of sleep. Oh, well.

We figured we'd try to see Grandma today (Sunday) since yesterday didn't work out, but we found out late last night that they wanted blood counts drawn today so that we could see if Rachel was "fit" to start chemotherapy on Monday. So, today a home health care nurse made a visit and we found out that Rachel's counts are good enough to start her new round of chemo tomorrow. Needless to say, we have yet to see Grandma. Guess flowers are going to have to do!

Tomorrow starts the last full chemo round that Rachel will have before school starts. Her next round we will be dealing with school schedules come the second week of chemo. Hard to believe that we're already talking about that! Where has the summer gone??? It seems to have gone EXTREMELY fast this year.

Specific Prayers:
~For pain relief and healing for Jodi's grandma, Vera.
~That Rachel's bacterial infection resolve.
~That Rachel's antibiotic can be changed to one that's given every 12 hours.
~That Rachel's counts remain high during this chemo round.
~That Rachel feel well during this chemo round.
~That Rachel remain fever-free.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure!

GIVE US A FIX IN 2006!!!!

Thursday, August 3, 2006 7:07 AM CDT

Sorry for the delay in updating you about Rachel's latest scan. We took a lightening strike on our property (simultaneous lightening and thunder ... VERY loud) on Monday night that played havoc with our phones for a day and wiped out our DSL modem. In other words, no internet. The repairman fixed everything late yesterday. I told him he was the man of the day and he laughed and said being in repair he's always the hero. Must be nice, huh? :-)

I was able to see Rachel's scan with my own eyes on Tuesday and yesterday I got the final report. The impression is that everything in both lungs is smaller in size!!!! WOO HOO!!!! Nothing drastic, mind you, but smaller is GOOD!!! The radiologist also mentioned that he thought the tumor in her abdomen, which has been stable for many months, is also smaller. We're thrilled, to say the least! PRAISE GOD!!!

We've decided to continue on the chemotherapy course that we're on and she'll have full scans (MRI, CT, PET) again in six weeks. We are relieved that we aren't headed back to the drawing board wondering what to do. A couple of other doctors have recommended adding another drug to the treatment program. Both myself and Rachel's doctor are doing some research on this drug as her doctor has never used it before. We don't want Rachel's counts to drop lower and for her to feel terrible if the therapy she's on now is working. We can keep it in our back pocket if the need arises or if it won't make her feel any sicker maybe we will add it now. That's what the research will be about. So, if anyone out there has had any experience with the chemo drug called Avastin, I'd love for you to email me!

Tomorrow Rachel has her dental surgery. I overheard her telling Blake, "I'm going to get silver teeth. The dentist says it's like being a princess because they're crowns. I'll be asleep for it." I had to giggle. Although I'm saddened by the fact that her teeth have deteriorated enough to need crowns, I'm happy that the work will finally be happening. I also know that many children have crowns and that it's no big deal, it's just one more thing that she has to deal with. I just pray that the enamel on her permanent teeth hasn't been damaged by the chemotherapy ... guess that comes under long-term effects of chemo, huh?

Specific Prayers:
~Thank the Lord for the decrease in tumor size in all areas!
~Thank the Lord for answering prayers!
~That Rachel's dental surgery go well.
~For direction with our research on the new chemo drug.
~For discernment about adding the new drug or not.
~That Rachel continue to feel well.
~That Rachel continue to gain weight.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!

GIVE US A FIX IN 2006!!!!

Monday, July 31, 2006 8:34 AM CDT

This past weekend was a wish come true! Four years ago, we were packing to go camping in Oshkosh, Wisconsin, at the annual aviation convention that is held there. It is something that was a family tradition for me ... I started going when I was three. Coming from a family that is aviation oriented, it was a natural thing to do. Mark and I had continued that tradition except for the year that I was on four months of bedrest when I was pregnant with Lance.

So, four years ago I was packing the camper. I vividly remember talking on the phone with Rachel's pediatrician as I was taking a load out to the camper. She was telling me that the ultrasound Rachel just had done that morning showed a solid mass not a fluid-filled one as they had hoped--and figured--it would be. We were leaving that evening to go to Oshkosh and they wanted an MRI done. They couldn't get her in for one yet that day, so we took the first slot in the morning the next day and decided that we would leave as soon as Rachel and I got back from Children's. Needless to say, the devastating news that was revealed to us on that 27th day of July, 2002--just two days after Mark's 40th birthday--not only cancelled our vacation, it completely altered the rest of our lives.

The next summer going to Oshkosh was out of the question as Rachel had lung surgery that week. The summer of 2003 brought us the realization that Rachel had recurred and we were getting ready to go to New York for surgery and radiation and Oshkosh was once again out of the question. The summer of 2004 ... what a horrid summer that was. My mother had died, Rachel was on chemo that left her pretty sick and she was in-and-out of the hospital. Oshkosh was totally out of the picture for us that year. What a difference a year can make! This summer Rachel is doing very well even while on chemotherapy. Rachel's home health care nurse was very accomodating and came out to our house on Sunday so that Rachel could have chemo Sunday thru Thursday so that we could leave for Oshkosh Thursday afternoon. WOW!!! We actually did it!! We actually took off Thursday and got back yesterday. It was the shortest amount of time we've ever spent there, but we're glad we went.

Neither Lance or Rachel remembered ever even being to Oshkosh before. I was surprised that Lance didn't remember it until I figured out he was only TWO when he was last there! Gads. Those two LOVED all of the airplanes. Lance's eyes were like saucers when he saw ... and HEARD ... the military aircraft on display and doing fly-bys and all of the exceptional aerobatics being done in a multitude of non-military aircraft. The reinactment of WWII always brings OOHs and AAHs because of the aircraft and the pyrotechnics. We had a fun time!

Now that the camper is out and cleaned, I'm planning on doing some more camping yet this summer. I was really thinking about heading out tomorrow after Rachel's scans, but today's heat index is supposed to be over 110 degrees. Hmmmmm ... I thought we lived in Minnesota!!! Tee hee!!! Yes, our camper has airconditioning, but when I camp I don't want to sit inside the camper all day ... especially with three kids! And sitting at the pool ... well ... 110 is HOT even by the pool! It's supposed to cool down midweek but then have heavy thunderstorms. We'll see. Hot, severe thunderstorms, and camping are just not three words that I like to use in the same sentence. I can be ready to go in a couple of hours time so last minute decisions are fine by me.

Tomorrow Rachel has a CT scan and then a physical to be sure that she's in good enough health to be sedated on Friday for her dental work. I should know the results of the CT during her physical. Then on Friday, Rachel will have a whole host of dental work done. It was decided to do it in the operating room because of the extensive work that needs to be done. It would've taken a couple of appointments and putting her through it in the dental office would've been torture. With everything she's already gone through and with her blood count situation, her oncologist, her dentist, and her parentist (me) decided to do it in a one stop shopping deal by putting her under anesthesia in the OR at the hospital. Her dentist has practicing privileges at our hospital so it's no big deal. The hardest part of all of this has been the scheduling. We've already had to reschedule this a couple of times due to low counts, chemo changes, and hospitalizations. We were actually hoping to have two weeks off of chemo before this procedure was done but her having pnemonia changed that and she'll only have one week off because of the delay in chemo in June which pushed everything back.

Rachel continues to do well right now. She's eating, she's growing, and she's looking forward to going to first grade. Hard to believe that we need to go school shopping soon. Can't believe my kids are old enough to be in seventh, second, and first grade. Can't believe I'm old enough to be their mother!!! Tee hee!!!

~Specific Prayers:
~That Rachel's scan show improvement in all areas.
~That Rachel continue to feel well and have high blood counts.
~That Rachel be able to have her dental surgery on Friday.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!

GIVE US A FIX IN 2006!!!!

Tuesday, July 25, 2006 9:36 AM CDT

This weekend Rachel got to play a part in my cousin’s wedding. Her official title was: “Chocolate Cordial Cutie”. Too funny. She handed out boxes of chocolates as people were filing out of the church after the wedding. Rachel was quite excited as the dress the bride chose for her to wear was PINK!!! Oh, yes, PINK! And frilly! And twirly!! Every female reading this knows what a twirly dress is … gotta have at least a couple of those in your lifetime!

I was a bit concerned about the dress when Rachel tried it on for the first time a couple of weeks ago. She was squirming so bad I thought she had bugs on her. “It itches!!!!!” she screamed. Itches?? Oh, great. I finally got her pinned down to the fact that the seams in the armpits were huge and had scratchy thread on them. I ended up sewing ribbon onto the seams and then hand sewing them flat—that hand sewing took HOURS because of the fabric of the dress and the multiple layers. UGH!! I got it done and had Rachel try it on and she continued to do the “bug dance” while screaming “It itches!!!!!!” It STILL itches???? Oh, no. I finally got the culprit pinned down to the seam at the waist. So, more ribbon and many hours later—many days later maybe I should say—I finished that task. She tried it on with a day to spare—“if this doesn’t work she’s going to have to wear an undershirt or cammy (which I’ll end up making) and I’ve got a day to do it in” was all I was thinking. She put it on, and her eyes widened like saucers as she danced and pranced across the room. When she did a little twirl her face lit up like the sun as her dress twirled in response. I will never forget that moment. She then had to show each brother what her dress could do … I don’t think they cared but she was enthralled! Oh, and “the” shoes, too! Got to wear “the” shoes again!! Rachel looked pretty, she felt pretty, and she had fun. I’ll post some pictures of her on the dance floor next week.

Chemo has continued and Rachel’s handling it well. So well that we’ve decided to do something that we haven’t done since Rachel’s been diagnosed. We’ve pulled out our own camper and I’m currently cleaning it so that we can take it camping!!! WOO HOO!! It was packed and ready to go the day that Rachel was diagnosed. We ended up unpacking it, winterizing it, and leaving it sit for FOUR years because of her health. If we’ve gone camping, we’ve borrowed my Dad’s camper. It feels like a slice of heaven to be back into our own camper again. It’s got four years of dust in it, but it’s not bad at all. I was totally impressed at how “clean” it was even after sitting for four years. And not one single mouse dropping … knock on wood! The kids are thrilled and I’m thinking that August is going to be one big camping trip. Rachel’s home health care nurse said he’s willing to work with us as far as giving chemo if we’re at a campground. I’m thrilled!!! We’ll see how the next month pans out. I just want to park the camper right by the pool during the week so that we’re not dealing with crowds and the kids can just swim their hearts out. Then we can skip out of there before the weekend and all of the crowds show up. See what happens.

Rachel has a CT scan on Tuesday next week and dental surgery on Friday of next week. Her week off from chemo will once again go fast. She’ll only have one more week off of chemo before school starts again. We sure need this CT to show some positive shrinkage in ALL areas!!!!! Please pray for that to happen.

Specific Prayers:
~That Rachel’s upcoming scan show significant improvement in all areas.
~That Rachel continue to feel well and do well.
~That Rachel’s counts remain high.
~That we be able to do a lot of camping for the rest of the summer.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!

GIVE US A FIX IN 2006!!!!

Wednesday, July 19, 2006 2:37 PM CDT

Another child's funeral attended. Another life cut off way too short. Another half-sized coffin layed in the ground. Another packed church filled with people holding tissues laiden with tears.

The tribute to Jared was fitting and beautiful. Those of us who have children with diseases that could end their lives "go there" all too often. As the priest said yesterday, "We hope and pray that this day never comes." Yes, we sure do. "But here it is," he continued. One always wonders if they will be the next set of parents in those shoes.

I know the pain of losing my mother, whom I was close to. I know the tears I've shed and the heartache I've had since she moved into another dimension. I miss her more than I can put into words ... and I didn't live with her on a day-to-day basis. We also all expect to have to bury our parents someday. Even though we "go there", I know that we can't even begin to imagine what it would be like if we were to now be in Jared's parent's shoes. It rips my heart out.

I think knowing that our children are a few steps closer on any given day than the "average" child makes these times even harder. My heart hurts so bad it wants to explode out of my chest for Jared's parents. You put yourself there. I saw Jared's oldest brother and put Blake there. And as a parent, you have your own grief to deal with and yet you must be a rock for your grieving children who may not know what to do with those feelings they're having. And, life goes on.

The cemetery was across the street behind the church. We all walked behind the hearse. As we were waiting for everyone to depart from the church, the gas station across the street announced that it's "all clear on pump 2". The announcement was loud and intrusive amongst a huge throng of silent, somber people. It was a huge reminder that life goes on. It was a stark statement.

When your child is diagnosed, life changes dramatically. The "normal" you once had is no longer. You create a "new normal" that includes clinic visits and hospital stays, chemotherapy and many other medications, nursing visits and low counts, transfusions and scans, and a host of many other things you had never dealt with before. They are all normal. You know that things are different in your house because most people look at you sideways when you talk about ANC's, translocations, CC's, and port-a-caths. You know your different because most people don't have an entire large kitchen cabinet plus another smaller one filled with medical supplies that have nothing to do with allergies, bandaids, and the flu--that's yet another cupboard. You know you're different when you have tubs on the bottom shelf of your refrigerator marked with your child's name on them and are filled with IV drugs ... including some in hazard bags. You know your different because the home-health-care nurses know the way around your supply cabinets.

Our "new normal" also includes new friends and sometimes the loss of some old ones. Some of these new friends are doctors and nurses, some of them social workers and radiologists, some of them child life specialists and psycologists, some of them whom have sick children of their own. And then your child dies. What now?

You can never return to your pre-diagnosis exhistance. It isn't there to go back to. Your "new normal" is now non-exhistant, too. You now have no reason to go to the hospital. You now have no reason to see the new "friends and family" network that you have created there. You lose your child. You lose your "new" friends and family. You lose your "new normal". Your calendar is no longer filled with appointments. Your time is no longer taken up with mixing medications. What are you to do?

You must, once again, create another normal. One without your child. One without many new friends. One without some of the old friends you had pre-diagnosis because they dropped off the radar screen when the rubber hit the road. Now you must create yet another "new normal". Ah, yes ... we go there. We all do. And we all hope and pray that the day never comes. But sometimes it does.

Specific Prayers:
~For peace and comfort for Jared's parents, siblings, and grandparents.
~For peace and hope for all parents dealing with an ill child.
~That Rachel continue to feel well during this chemo treatment.
~That Rachel's counts remain high.
~That Rachel's upcoming scans show improvement in all areas.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure!!!!

GIVE US A FIX IN 2006!!!!!

Monday, July 17, 2006 8:29 AM CDT

Rather last minute, we realized that we had the opportunity to take an extended weekend camping trip. I packed up the troops and after the boys' swimming lessons Thursday morning, we headed out of town.

We pretty much spent the entire time at the pool. All three kids were very busy jumping and flipping off of the diving boards. Yes, you read that correctly ... ALL THREE KIDS. :-) For hours on end I sat in the deep end (or on the edge) and watched these three jump off the diving board, swim to the edge, get out get in line, jump off ... over and over and over again!! Rachel had her floaties on because she just got too tired swimming without them for long periods of time without being able to touch bottom. She had a BLAST!!! We all did!!

Mini golf, swimming, pony rides, swimming, feeding aminals (Rachel's word for "animals") at the petting zoo, swimming, s'mores, swimming, bon fires, swimming ... you get the picture. It was a bit of heaven. And when Daddy came and joined us after the work week ... well, of course they all had to show him what they could do and we continued to spend hours at the pool!!

Just to come back and find out that our friend Jared passed into the arms of Jesus on Friday night. We are very saddened to lose yet another child to this horrid disease called pediatric cancer. We ask that you please pray for peace and comfort for his parents, Billy & Tina, and his siblings Nathan, Elizabeth, Andrew, and Brandon. If memory serves me correctly, Nathan is the same age as Blake and will be entering 7th grade this fall, Elizabeth starts 6th grade, I think Andrew is the same age as Lance and will be entering 2nd grade, and Brandon will start Kindergarten. This has been a long haul for this family. I think he was diagnosed around nine months to a year or so after Rachel was. We all hope and pray for an end to our children's and family's sufferings ... but not this way. Yes, their pain is over, but a new one has just begun for the rest of the family that will never go away. They will all have a Jared-shaped hole in their hearts forever ... it will never heal. Please pray for them.

Rachel starts chemotherapy again today. That one week off sure goes fast! She has a CT scan in two weeks. Hopefully we'll see some gratifying results. Last week, Rachel had an appointment with her orthopaedist. Her right leg is measuring just over 5 centimeters shorter than the left. We are quite happy about that!! She is showing about a 2 centimeter per year difference which is much less than the 5 centimeters per year he was thinking could happen--and which would cause many problems.

She is showing a "foot drop" in her right foot. When we walk we automatically pull our toes back towards our head to keep the foot from dragging on the ground and ultimately tripping. Because of the extensive work to her siatic nerve, and because of one of the chemo drugs, Rachel doesn't have the ability in her right foot to pull her toes back. Because of this, when she walks, her right toes drop towards the ground rather than being pulled upwards. Because she doesn't want to trip--which will happen if her foot drags--she's compensating by moving her hip upwards to keep her foot up.

I knew that she walked funny (but I'm watching closely all the time because I know the issues at hand) but anyone not looking for it wouldn't even notice. It is something that I'm going to have to talk with her phy-ed teacher about now that she's going into first grade. Running can pose a problem because she just can't always keep that foot from dragging. She does trip once-in-a-while while walking and much more when running. Not so much that we feel anything has to be done about it except continued physical therapy (splints were mentioned) unless things worsen.

Specific Prayers:
~For peace and comfort during this trying time for Jared's family.
~Thank the Lord for the wonderful weekend we were able to enjoy as a family.
~That Rachel's CT scan show improved results in all areas.
~That Rachel feel well during this chemo round.
~That Rachel's counts remain high during this chemo round.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!!

GIVE US A FIX IN 2006!!!

Monday, July 10, 2006 4:20 PM CDT

This is Rachel's week off from chemo. The boys have swimming lessons this week and next, so we've decided to let Rachel be "free" from having her port needle in this week so that we can go swimming after the boys are done with their lessons. She's rather excited about that.

Right now Rachel is sitting on the floor in the dining room putting together a felt pouch, necklace and bracelet that she received as a gift. She's stringing the yarn through them and "sewing" them into wonderful treasures! She's absolutely LOVING it!

Rachel is feeling good and she's looking great! One would have no idea how truely sick she is. She's putting on a little weight and no longer has those sticky bird legs. Nice to see a little meat around the knees!

Scans are being scheduled for three weeks from now so that we can see what's going on. Hopefully we'll see drastic improvement EVERYWHERE and not have to change chemo courses. Being that she does so well with this one, it would be nice to be able to finish up what needs to be done and not have to switch chemo's. Although, because it's every day for two weeks, it does play havoc with trying to go anywhere. The same vacation that got cancelled the year Rachel was diagnosed, and every year since then because of treatment of some sort, may once again not happen this year because of chemo. We're working on getting it moved around but chemo is more important. We'll see what happens.

It's hard to believe that we are 1/3 of the way through July already. Where does the time go???? Won't be long before the kids start school again. Unreal. Absolutely unreal.

Please keep praying for our friend Jared. We know what the power of prayer can do!!

Specific Prayers:
~For a miracle for Jared.
~That Rachel continue to feel well and put weight on.
~That Rachel not have any long-term side effects from chemo, radiation, or surgery.
~That Rachel be given the miracle of a cure!!!

GIVE US A FIX IN 2006!!!!

Wednesday, July 5, 2006 9:56 PM CDT

Chemo continues to go on as scheduled and with no problems. We're looking forward to having a week off next week! Hopefully we'll get some swimming in.

This weekend was a lot of fun! It started out with us throwing a surprise 65 1/2 birthday party for my dad. Being that his birthday is January 1, it's not exactly the best time to be throwing a party with all of the holiday celebrations and so many friends being snowbirds. When my mother died, my sister and I decided that we needed to have something fun go on during this first year without Mom and decided that a birthday party for Dad would be just the ticket. At that point, our brother wasn't engaged yet. Needless to say, my sister and I have now thrown three parties in seven weeks--bridal shower, groom's dinner, birthday party. We're DONE! Right now I don't think either one of us cares if we don't talk to one another for a while! Tee hee!! We've never talked to one another so much in our entire lives as we have the past several months.

This weekend was the year anniversary of my mother dieing. It really seemed no different than any other weekend. Sure, we thought about her. My kids talked about her alot. Lance said several times that he missed her. I think my kids missing her hurts me more than anything. I want them to have their wonderful grandma. I never knew my grandfather (my dad's dad) and I always felt jipped as a kid. I know that feeling and it saddens me that they will have it, too. At least they got to know her ... my grandfather died when I was six months old. But, still ... maybe the pain is worse knowing what they're missing.

Overall the weekend went well and the kids had fun doing fireworks. They act like they've just won the lottery whenever we do fireworks. Too funny!

Many of you prayed for our friend, Jared, this past spring. Yesterday I received an email that things have gone downhill for him and that the doctor's feel there isn't anything they can do for him. His parents did update his site today. Please pray for Jared's parents, Tina and Billy, that they have peace and understanding. Please pray that Jared be painfree (he isn't right now). Please pray for a miracle! His website is: http://www.caringbridge.org/mn/jaredtomala

Specific Prayers:
~For a miracle for Jared.
~That Rachel remain feeling good throughout this chemo round.
~That Rachel's counts not drop below 1,000.
~That Rachel not have any long term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!!!

GIVE US A FIX IN 2006!!!!!

Thursday, June 29, 2006 10:41 AM CDT

I'm starting to get yelled at! Tee hee! Not that I haven't thought about updating .... it just didn't happen.

When we last left you, Rachel was starting to feel better after being on the new antibiotic for 24-hours. She continued to do better up until Friday late afternoon at which time she started running a temperature of 100.8 and was defineately not feeling well. After watching her for a couple of hours, I decided to call the doctor on-call just to get a second opinion. I didn't like the fact that she'd been fever-free for three days, and when we were into clinic on Friday morning she was doing better. I told the doctor the whole story and she decided that we should wait and see if Rachel's temp went up to 101.5 degrees--the magic number in the oncology world, I guess.

Saturday morning Rachel's temperature was still at 100.8 and later in the day started jumping around between that and 101.3 degrees. After the second time at 101.3 and staying there, I chose to once again call the doctor on-call--different doctor now. After hearing the story, he hemmed and hawed and said, "Give her Tylenol and if she's still running 101 degrees or more in two hours, call me back." Huh? Okay. He was thinking that maybe the antibiotic just needed a little bit longer to work to really clear everything out but that if it was now a bacterial infection that the fever would bust through the Tylenol.

In two hours, Rachel was down to 99.6 and Sunday morning she was back to normal in temperature and in the way she felt. She hasn't looked back since.

Monday I took her to tennis and she had a very good day! She actually WON a game that they were playing!!! I was so proud of her ... she was proud of herself! The instructor stood on one side of the net and the kids were in a line one behind the other on the other side. The instructor would hit the ball to the first person in line and they had to hit it back over the net. If you did, you got to go to the back of the line and continue to be in the "game". If you didn't, you had to put down your racket and go to the same side of the net as the instructor and catch balls as they came over the net. If you actually caught a ball you got to go back over and get in line and the person whose ball you caught had to put down their racket and go on the instructor's side. Rachel kept hitting the ball over the net--I was astounded! She may not be able to dribble a ball with her racket but she can hit one! They were down to two people in line with Rachel being one of them. She hit the ball into the net and had to put down her racket and go to the other side. The last girl had to make it over the net and not have her ball caught for her to be the winner. She hit the ball over the net and Rachel caught it! Rachel picked up her racket and walked back over and the girl whose ball she caught put down her racket and joined the instructor's side. Now it was time for Rachel to prove herself ... and she did! You should've seen her face light up (and Mommy's!) when she won. It was priceless! She looked at me with this astounded look on her face that said, "Me? I WON???" I gave her the thumbs up and she beamed. What a day! She could hardly wait to go back on Wednesday. On Wednesday she didn't win, but she was one of the last kids out. Truly amazing.

Besides tennis this week, she has started chemotherapy. We're now on Day 4 and the nurse should actually be arriving any minute now to give her today's dose. So far, so good. No vomiting. No diarrhea. She is tired, but being that she just had pneumonia and is now having chemo, I'd say she's entitled to be tired.

Lance has totally recovered from his bout of pneumonia and Blake is home from camp. Things are now settling into our summer routine. The plan is to have Rachel do two rounds of the same chemotherapy and rescan her. I have seen the scans with my own eyes and I do have to agree that the stuff on her right side is larger. Bummer. We'll just keep plugging along and change courses if necessary after the next scans.

It's hard to believe that June is almost gone and that we'll be dealing with the first anniversary of my mother's death on July 3rd. It has gone fast. We miss her dearly, but we've continued on without her. I think my entire family has done very well this past year but we're all glad that the "year of firsts" is just about behind us.

Rachel's hollering that she's hungry so I guess I'd better go feed my starving child ... I've already fed her TWICE this morning. Hmmmmmm ... do ya think she may be growing!?!?!?!?!!?

Specific Prayers:
~That Rachel remain feeling well during this round of chemotherapy.
~That Rachel learn to swallow pills.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure in 2006!!

GIVE US A FIX IN 2006!!!

Tuesday, June 20, 2006 2:42 PM CDT

Since I've last written, we've had a trip to the Emergency Room and been to clinic twice. Rachel has pnemonia. Oh, yippee. Needless to say, chemotherapy has been delayed. We've had multiple chest x-rays, a couple of doses of IV antibiotics, we've already switched oral antibiotics, we got a nasal wash (oh, that's fun ... not!), we are now the proud owners of a nebulizer machine, and this afternoon she finally seems like Rachel again. Today is actually the first day she's had a normal temperature in several days. Whew. Thanks for sharing, Lance.

I'm actually still waiting for the results from today's x-rays. Her lungs actually sound "gunkier" today than they have, but she sure looks better. She's actually playing and interacting with Lance rather than sitting on the chair watching tv and whining that she wants to be held. Guess it helps when you're temperture is normal, too.

Would be nice if she were able to start chemo tomorrow, but I'm not going to hold my breath. They're checking the results of her nasal wash for virus. Her counts are down from Friday, too, which they said is quite common with a virus. We'll see what the doctor says when she calls tonight.

Because of not feeling well, Rachel didn't make it to tennis lessons Monday ... maybe tomorrow.

Blake left for church camp on Sunday. He was quite excited about going. Can't blame him. I'm sure he's having a blast!! He'll be coming home on Friday.

Lance has recovered nicely from his pnemonia and was back to being the Energizer Bunny within 24 hours of getting on the antibiotic. Too funny. Not much keeps that kid down! He's glad to be done with the antibiotic because it wasn't the best tasting stuff, I guess. He's sympathizing with Rachel right now.

We'll be glad to rid pnemonia good bye!

Specific Prayers:
~That Rachel's pnemonia be cured.
~That Rachel be well enough to start chemotherapy by Friday.
~That Rachel's counts rise quickly.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel be given the miracle of a cure!

PRAY FOR A FIX IN 2006!!!

Thursday, June 15, 2006 2:37 PM CDT

Yesterday was my Mom's birthday. Well, would've been anyway. It's hard to believe that it's been almost a year since she passed away. We're doing okay. But we miss her terribly. Only one more "firsts" to go ... the first anniversary of her death. It's been tough, but we've come out on the otherside intact. We'll be okay.

Rachel actually swam today all by herself! She is really excelling in the pool. So much so that I'm going to sign her up again for another week of lessons some time this summer. The swim school offered me the same "deal" they gave me for this week if I wanted to bring her back again. I'm going to take them up on it.

Rachel just smiled and giggled all through her lessons. And she worked hard. We're very proud of her. She really came far in one week!!

Next week will be a slower pace as chemo starts, once again, and we're more home-bound. Also, Blake will be at church camp so one less kid around always seems to make a difference, too. Although, at this point, he's my "easy" kid being that he's 12.

Lance ended up being diagnosed with walking pnemonia yesterday. Great. He's on antibiotics and is doing well today. Tuesday he was totally normal and yesterday his temperature spiked to 104 degrees. I listened to his lungs and they just rattled. Lovely. Went in to the pediatrician and, sure enough, pnemonia. As long as Rachel doesn't get it ...

We continue on one day at time believing that Rachel's miracle is yet to come. Sure is taking a long time, though.

Specific Prayers:
~Thank the Lord that swimming lessons went so well and that Rachel accomplished so much.
~That Rachel not get pnemonia.
~That Lance's temperature remain normal.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of cure!!

PRAY FOR A FIX IN 2006!!!

Tuesday, June 13, 2006 8:22 AM CDT

Rachel isn't exactly gung-ho about her tennis lessons. She told Mark that they're hard. Yes, I would have to agree with her to a point. Of course, some of the kids were able to accomplish what the instructors were asking of them, but the majority were floundering all over the place. I did see improvement with Rachel, though. I guess that's all we can ask for. She was very tired afterwards (a 40 minute session) and has already said this morning, "Do I have to go to tennis today?" "No, tomorrow. It's two times a week, Honey." "Good, I don't wanna go today." Oh, oh. I don't think the coaching staff--the oldest probably being all of 23--has really had much training in how to teach small children and what rewards work for a group of them and what doesn't and how things need to be explained. It was kinda tough to sit and listen to it at times yesterday. I felt bad for many of the kids ... including my own. It was a total "reward those who have done this before" system. Those who had never held a racket in their hand before were left in the dust on many levels. Five more lessons to go ...

Now swimming lessons were a TOTALLY different story!!! She wasn't exactly thrilled with me when she found out that she wasn't going to be with a group of kids but with a private instructor. (I was calling around to different facilities seeing what I could find for swimming lessons for ONE week and not the two week swim camps or once a week swimming for the entire summer. We needed something to fit into her chemo schedule because of having her port accessed with a needle. The place we're going to offered me private lessons for one week at the price of doing a regular two-week swim camp! Believe me, I jumped on it!!) I explained to Rachel that because she was only going for one week she was considered a fast learner and needed to be in lessons with the teacher by herself. She beamed! She absolutely beamed! And then she proved me totally right!

She could hardly wait to get into the water and when her instructor came up to us, Rachel was off like a bolt of lightening and didn't look back. She got into the water and sang songs with the instructor with water actions, she used the equipment the instructor gave her like she'd used it all before (she hasn't), and she was doing exactly as she was told to do. She was having so much fun and I was having fun watching her. Then, the instructor had her lieing on her back and slowly let go. Rachel just layed there floating ... and floating ... and floating. I was stunned! I sat there with my mouth to the floor. When the instructor picked her up, I started clapping. "Hasn't she done that before?" the instructor asked. "NO!" I exclaimed. "Unless in the bathtub counts." We all laughed. They did it again and I got a picture! I was absolutely thrilled and so was the instructor. After my description of where she was at, she just wasn't expecting the results she was getting ... neither was I!! We were all thrilled and Rachel can hardly wait to go back today. Whew!! :-)

As far as her scans go, I did talk with Rachel's primary oncolgist last night. She's come up with three reasons why we're seeing what we're seeing. The first is that each cell on the right side has mutated and become chemo resistant. The second is that the chemotherapy, besides the "normal" results could also be anti-angiogenisis but she didn't think it was touted as one of those types of drugs. Anti-angiogenisis means that it doesn't target the cancer itself, per se, but the blood vessels that feed the tumor. Often what happens in that type of situtation is before the tumors die and get smaller, they grow. The third reason she gave was that there was two weeks between the time that the last scans were taken and Rachel starting chemotherapy. In reality, that would've given the tumors a minimum of two weeks to grow and possibly even a bit longer until the chemotherapy actually built-up high enough levels in her to stop the tumor growth. It could be that we're not seeing growth but that we're actually on the back-side and seeing tumors, that although weren't there when we scanned before, were there when the chemo levels got high enough to stop growth and are actually smaller than they were then. Now, all of these reasons are totally guesses and we really won't have a clearer picture until we rescan again in the future. Her doctor reminded me that the PET scan WAS better, but she added, she doesn't really know how much faith she has in PET scans. It's funny, some doctors LOVE PET scans and others aren't so keen on them. So, that's where things are today. We are going to either do another two rounds of chemo and then have another CT scan--that will be in six weeks--or we are going to do another three rounds and then have both a CT and a PET scan. Mark and I have yet to decide. I'm leaning towards the six-week scan myself.

So, let's please stop praying for asthma--she really doesn't need that on top of everything else--and pray that these tumors are actually smaller than they were to begin with. Rachel's doctor is also looking into a drug that is inhaled and targets tumors in the lungs. The doctor has had one other patient on it and it didn't seem to help, but one patient does not a study make. We'll see what happens with that after she's talked to doctors who have used it extensively.

Specific Prayers:
~That Rachel's tumors are all shrinking.
~That the next scans show complete disolvement of all of Rachel's tumors.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!!

PRAYING FOR THE ULTIMATE FIX IN 2006!!!!

Sunday, June 11, 2006 11:37 AM CDT

Well, the scans are done. I have yet to speak with Rachel's primary oncologist--hopefully tonight we'll be able to have a phone conversation. So far it's only been emails between the two of us. The MRI showed no changes in her pelvis or thighs. That's good! Alas, the CT does not give us as much encouragement. Although the left lung and pleura disease has decreased in size, it seems that the right side has increase in both size and number. Mark and I are confused by that. How can one side shrink and the other side get bigger while on chemo? I mean, if it's working it should be working everywhere, right? Guess that was the question with the liver, too. Although, the CT shows nothing with her liver. While doing the CT this time, one of the technicians asked me if Rachel has asthma. I thought that was strange. Now I know why they asked. Although Rachel's oncologist is also confused by the results, she did throw this out for an explanation:

"I am perplexed too--it is unusual--although with time tumors mutate--and therefore theoretically some of the tumor nodules may have mutated in a way that they have become resistant (to chemotherapy)."

Doesn't that sound fun??? Her initial thought is that we should continue for another two rounds of chemo and then rescan her.

As I said, hopefully Rachel's oncologist and I will be able to talk tonight and I'll get a clearer picture of what's going on. Needless to say, we're disappointed and confused. If we've got tumors becoming resistant to chemotherapy, we just aren't in a very good position at all. But, we don't know that for sure. I'm trying to remain upbeat and positive and keep the faith going. This is all in God's hands and He will carry us through no matter what the outcome. It's just so damn frustrating. It's that take-two-steps-forward-and-one-step-back syndrome that we seem to get hit by all the time. Maybe I'll have a clearer picture tonight ... then again, maybe I won't.

I'm taking a big sigh and hoping to find the silver lining somewhere. Right now nothing is looking very shiny. We'll continue taking one day at a time and plodding along on this slow road to only God know's where.

Maybe it's just asthma ...

On top of this, Rachel has had continued "break-through" diarrhea that I'm beginning to think is from the chemotherapy. After her vomiting episode with the pizza (which her teacher assured me were cut into SQUARES not wedges as the child told me!) she ended up having diarrhea that evening and it has continued ever since. Also, Lance is running a temperature of 103 degrees, coughing, and stuffy nose. We're laying low today ... tennis and swimming lessons start tomorrow for Rachel and golf camp starts for the boys.

No matter what we've just learned from the scans, life goes on. The sun still comes up. We have a choice of how to live today. We have a choice to really live life or let it continue around us. We'll live it.

Maybe it's just asthma ...

Specific Prayers:
~For clear understanding of what the scans are showing.
~For discernment for Rachel's treatment.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel be given the miracle of a cure!!!

Thursday, June 8, 2006 8:50 PM CDT

Yes, much to my surprise, all three of my children moved on to the next grade! I just don't see why their teachers wouldn't want to keep them in their classrooms forever and ever, do you??? I mean, they're just so cute, and fun, and loveable--and I'm not predjudice, either! Tee hee!! Seriously, all three kids are very glad that school is behind them for a few months and like to rub it in that there is now a 7th grader, 2nd grader and a 1st grader in our house. All three kids in all day school ... I think I've dreamed of this for 6 years! Tee hee!!! Someone asked Lance, "What's mommy going to do with all of you gone all day?" Without missing a beat he said, "Sleep." I laughed and with a shrug of the shoulders said that that may actually not be a bad idea. :-)

Today in school, the kindergarteners got a pizza party. When Rachel comes home from school she is generally famished. Today when I asked her what she wanted for lunch she said, "Nothing." I looked at her strange and she said, "Really, Mommy, I don't want anything." Okay. About two hours later she started complaining about her tummy hurting. "You're hungry, Rachel," I explained. "No, Mommy, I'm not hungry. My tummy just hurts." Not long after that she did her gaggy, coughing thing and I picked her up and set her by the sink just in time for her to start projectile vomiting. I was looking at the contents of what was blasting from her mouth and I said, "Rachel, how many pieces of pizza did you have today?" "Four." "Four squares or four pie-shaped pieces?" "Four pie-shaped pieces. I was hungry." I'm thinking to myself, "Where in the world did you put FOUR pieces???" "What did you have to drink?" "Orange pop." Well, the contents were totally explained. Enough said.

After the little sink excursion the rest of the day was pretty uneventful. She said she felt better and proceeded to play games with her nurse who came to give her chemo.

Since writing the above, I have had the dreaded, "MOMMY!" call from the bathroom. Rachel has just had the diarrhea. Diarrhea from the pizza escapade or diarrhea from the chemo? We may never know but my guess is it's related to the pizza as she hasn't had any problems with the chemo yet this round. She's now back in bed with Daddy laying with her. Nothing a good cuddle with Daddy can't help!

Tomorrow (Friday) Rachel has both a MRI and a CT scan. Afterwards, she will have chemotherapy. I should have preliminary results from the scans before we leave the clinic. Hopefully they will shed some light on what's going on with her liver.

We continue to be thankful for how well Rachel is doing and for the fact that Rachel has FINISHED kindergarten ... something she was never supposed to even begin. We continue to pray for that cure! Give us a fix in 2006! Thank goodness I wasn't a cheerleader, huh??? :-P

Specific Prayers:
~That Rachel's scans show there is no cancer on her liver.
~That Rachel's scans show her liver is normal.
~That Rachel continue to feel well.
~That Rachel's ANC not drop below 1,000.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of cure!

Wednesday, June 7, 2006 6:37 AM CDT

I'm sitting here looking at the results of Rachel's PET scan. For this scan, they inject her with a radio-active glucose dye they call FDG. Cancer cells "uptake" this dye quickly so it accumulates in tumors. An hour after injecting the dye into her, they run her through a machine that looks like a CT scan. It takes about 20 minutes for Rachel to have her entire body scanned. The areas of uptake then show up on the pictures they have taken and these areas are then assumed to be cancerous. It isn't 100%, though. Is there anything that is?? Sometimes areas of cancer don't show up on the PET, and sometimes things that aren't cancerous do show up. Anything less than 1 cm in diameter will probably not show.

With that history, let me brief you on what her report says in terms understandable by all. The report starts out by saying:

Overall, there has been significant improvement since the March 2006 scan.

Should I go on?? Tee hee!! We're VERY happy about this. According to the report, the extensive disease that was in both her lungs and in the sack (pleura) around her lungs on the left side have both decreased significantly. They measure the uptake and the numbers are down quite a bit. There are however still tumors in both of these areas.

Within the abdomen, she has a spot on her backside at the level of the upper pole of the left kidney which is similar to the March scan. They actually thought on the last scan that this area was just an extension of her pleura disease, but now they are saying that it is seperate. So, either it has dissolved so that it is now a seperate tumor or it was never connected in the first place.

The tumor at the back of her abdomen level with her hips has completely or nearly completely resolved.

She now has a small area of increased FDG uptake over the anterior surface of the right lobe of the liver and they say it's suspicous for a small metastatic deposit and that this is new since the last scan. We're not going to get excited about this until we have the results of the MRI and CT scans, which will be taken this Friday. All three scans together can give a much clearer picture than just one alone. And although we don't want it to be another tumor, we can deal with something on her liver better than in her lungs. It is this lung disease that will kill her. We also find it strange that there has been a significant reduction of tumor in all areas and at the same time she's getting a new one? Seems strange. So, we'll just wait for Friday.

Chemotherapy continues through Friday. She is once again feeling well and hating the medicine she has to take. She has her sights set on Saturday when we go toy shopping once again for her taking all of the icky medicine like a trooper.

She only has two days left of school and is SO excited to be a first grader!! This all-day school is sure going to be different for her. I hope she's able to handle it physically. I know that right now it would be too much for her. I suppose it is a huge adjustment in the beginning but that they get used to it. I guess I do remember Lance being very tired in the beginning, too. It's also going to be quite different if she misses school now. There will be all of the lessons to make-up besides the homework. Guess we'll deal with it when it happens.

Rachel starts tennis lessons on Monday. This is going to be an absolute hoot. I still have to find her a tennis racket--preferably one that isn't bigger than she is. Maybe a badmitten racket? I think we've got a small, plastic one of those laying around here somewhere! Guess I'd better go shopping!

With the results of these scans, I guess we'd have to say that everything is moving in the right direction. Please give thanks for that.

Specific Prayers:
~Thank the Lord for the improvement shown on the PET scan.
~That Rachel's ANC not drop below 1000 during this round of chemo.
~That Rachel remain feeling good and fever-free.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth!!

Thursday, June 1, 2006 6:51 AM CDT

The wedding is over! WHEW!! You know, those things really are a lot of work ... and we're not even the BRIDE'S family!! It was incredibly hot with record breaking temperatures here this past weekend. The church wasn't air conditioned so it was a scorcher. I felt really bad for the guys in their tuxes. We all tended to congregate in front of the fans that were positioned in the hallway. But, I'd certainly rather have it hot and steamy over cold and snowy ... we've seen that happen on Memorial Day weekend, too!!

The church was on a hill by a lake so the couple will have some beautiful outdoor pictures!! Alas, my pictures of Rachel with her shoes didn't turn out, nor did any of her just standing by herself looking pretty in her dress. I'm thinking my camera lens must've kept steaming up from humidity because they're blurry. We'll just have to wait for the ones from the photographer. He took digital pictures and I'll be contacted when they are displayed online--hopefully this week yet! Unless someone else who was at the wedding has a good picture of Rachel! Please email it to me so that I can put it on the website. Heck, email me ANY pictures you have of the wedding!!

Rachel did a FANTASTIC job and did exactly what she was supposed to do. She looked just beautiful! There were many wet eyes and really big smiles on the groom's side of the church when she walked down the aisle. "I hope she gets to walk down that aisle again but in a big white dress and with her daddy at her side," popped into my head as she went by me.

By the end of the night, she was pretty tired of the photographer. He told me that the bride had told him to take a lot of pictures of Rachel. I think Rachel was ready to tell him that there's a difference between taking lots of pictures and being the papparazzi! Rachel was actually trying to avoid the guy!

A very good time was had and it was so much fun to see so many of our friends and family under one roof. That's what's so great about weddings! Especially when it's one of your own family getting married because then you know at least half the people in the room!

We are now back to having chemo everyday. Rachel is back on the icky medicine and everything else. She does have a PET scan tomorrow morning (she should actually be in the scan around 11:00 CDT) and she has a MRI and a CT scan on Friday, June 9. We are begging, pleading and making bargains for CLEAR scans!!! Please pray with us.

I won't know the results of the PET scan until early next week and I'm not sure how much sense it will make until we have the other scans, too. I will certainly let you know when I have results. Let those results be CLEAR!!!! Praying, praying, praying ....

Specific Prayers:
~Thank the Lord for Rachel feeling well enough to be a part of the wedding.
~Thank the Lord that Rachel enjoyed herself so much at the wedding.
~That Rachel's scans this week and next be completely CLEAR!!!!!
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!

Tuesday, May 23, 2006 10:36 PM CDT

We'll try a very quick update! Things are moving quickly around here ... THE wedding is THIS weekend!!!! WOO HOO!!! We're SO excited but mommy is running around like a chicken with her head cut off. :-) Besides all the wedding stuff, we've had two field trips, and people at the house doing some work for us. It's been a zoo. I feel like our front door is a revolving one.

Rachel and her class went to the Children's museum and the Como Park Zoo in St. Paul last week, and today Lance and his class went to the Minnesota Landscape Arboretum--I chaperoned on both. We had a great time on both but they sure wear you out!

Rachel is doing well except she will have a big old bruise on her arm for the wedding. She fell off the couch (don't ask) and hit her arm on the corner of the coffee table. OUCH!!! Of course, her dress is sleeveless. Oh, well. Guess it's better than a black eye!

All the last minute details are getting done, bought, figured out for the grooms dinner and our part in the wedding but I'm not done yet. This is getting down to the wire and could become interesting. I at least have a dress for the wedding ....

I may not get a chance to update again until after the wedding. But, at that time, I'll have pictures of Rachel in her beautiful "get-up"!

Specific Prayers:
~That Rachel continue to feel well.
~That Rachel feel well for the wedding.
~That Rachel have fun during the wedding.
~For beautiful weather this weekend!
~That Rachel's scans are clear.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!

Tuesday, May 16, 2006 7:01 AM CDT

"THE shoes" are done! I never did find any pre-sequined embellishments, but I did find pre-beaded bridal lace that worked. The laces that were already pre-sequined were the wrong color sequins so I just bought one of the pre-beaded ones and sequined it myself. I now have a brand new appreciation for my mother who hand beaded and sequined my wedding dress. Oh, my! Rachel adores her shoes! You should've seen her eyes when I first showed the finished product to her. I find them a bit much, but SHE loves them and that's what's important. Thank goodness the bride doesn't care!!! Rachel is going to be part of another wedding in July and I'm really hoping that she can wear these shoes for that one, too. The dress will be pink (much to Rachel's absolute delight!) but I think white shoes goes with pink.

Now I'm working on "THE socks". It never ends, does it??? Rachel really knows what she wants! The socks have a silvery-looking butterfly on them and "THE shoes" have a sequined butterfly on them ... they need to match, don't ya know. So, I'm now sewing beads and sequins on these socks. Don't even think about the beaded anklet idea. OH, NO!!!! She used to LOVE those type of socks and now she won't touch them with a ten-foot pole. "They bother me." Oh, okay. I even bought a pair of socks with tule around the upper edge thinking that I could put some sequins and beads on those. Absolutely not!! Great. Now I have these socks that I bought at the Mall of America that I need to return. I go to that mall like once every two years. It really seems to be a waste to go there to return a $4.00 pair of socks. They may end up as an extra in somebody's baby girl gift!! Tee hee!! Ya know, little boys sure are simpler. The most challenging thing is the color of the shirt and a tie to match to wear under their suit! And as long as the shoes fit, you're ready to go.

Rachel continues to be feeling well and doing well. She did get her toy this weekend for taking all of her medicine for the past two weeks. It's an outdoor toy and it's been raining for like the past week! So, last night, between rain showers the kids got the new toy out. Some sort of sidewalk paint spinner or something horrific like that. Needless to say, they didn't have as much paint on themselves as the driveway, but I'm thinking it was close. Thank goodness for washable paint!!! "We didn't know it was going to go so fast!" Uh, yeah. It's even got batteries. Is there a toy that doesn't??? I go through batteries like toilet paper!! Needless to say, it was good, harmless fun with a lot of laughs and a few surprises. And it all cleaned up with water. :-)

Specific Prayers:
~That Rachel continue to feel well.
~That Rachel's counts rise quickly.
~That Rachel's scans be clear.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel be given the miracle of a cure!!

Saturday, May 13, 2006 8:17 AM CDT

Another round of chemo is behind us. Rachel now gets two weeks off so that she's in top form to do flower girl "duty". :-) We have purchased shoes and I am diligently adding more sequins but I've been told that it isn't enough! Boy, this is really going to be interesting. So, now I'm on the hunt for those pre-sequined bridal embellishments. Anyone know what I mean? I've been to several places around here already and no luck--I can't believe it! I'm headed to another place today to see what I can find. Never thought SHOES would be this complicated!!! I didn't spend this much time on my own shoes for my own wedding!!! Oh, well.

Scans are scheduled for the beginning of June. She will have a PET scan on June 2 (I'm hoping to change that to June 1 because of the time slot that we have on the 2nd) and a MRI and CT are scheduled for June 9. I'm excited and apprehensive at the same time. I wasn't very thrilled with the words I heard while working on getting the scans scheduled. "It probably doesn't really matter what these scans say because if this chemo doesn't work there really isn't anything left to offer." My hair stood on end and my momma-bear instincts made my claws come out and I think I may have started hissing, too. I don't think I have to tell you that we won't give up. I think we need to see what the scans say before we start "going there".

Rachel's counts are the lowest they have been on this new chemo. They are still "good" counts for a chemo kid, just low for what she's been lately. Her counts yesterday were:

White Blood Count (WBC): 2,000
Hemoglobin (Hgb): 10.2
Platelets (Plt): 65,000
Absolute Neutraphil Count (ANC): 938

Her ANC (the measure of infection fighters in her system) has never been below 2,000 with this new chemo. I'm a little taken back but not totally surprised as it's not unusual for counts to go lower and lower as chemotherapy continues. I am concerned that this will mean fevers and hospitalizations in the future (oh, yippee during the summer) due to low counts. I'm not going to dwell on it and pray that she's able to do all the things she wants to this summer.

Speaking of which, this teeny-tiny little girl wants to go to basketball classes this summer!!! WHAT????? She's serious, too!! I'm thinking, "They may just dribble YOU down the court and into the basket!" When I realized that it was a basketball camp and that she'd be there longer than her schoolday is now, she was no longer interested. "WHAT? Longer than school? Uh, uh. No. Mommy, I want to do tennis." Doesn't miss a beat, does she? Does this mean I have to buy a child's size tennis racket?? It will STILL be bigger than her! I mean, for pete's sakes, she's still wearing size 3 shirts!!! She's six and weighs a mere 32 pounds. Can you even fathom this? At least it's a non-contact sport ...

Between wedding shoes and summer sports she has this mommy going completely bonkers!!! Thanks for your continued prayers as we travel this very bumpy road.

Specific Prayers:
~Thank the Lord for another symptom-free chemo round.
~That Rachel's hopes and dreams about being a flower girl all come true.
~That Rachel continue to feel well.
~That Rachel's counts rebound quickly.
~That Rachel's scans are clear.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel be given the miracle of a cure.

Sunday, May 7, 2006 5:46 PM CDT

Last night we went to the Minnesota Twins baseball game. Rachel's kindergarten class was to sing the 7th inning stretch--"Take Me Out To the Ballgame". They did a GREAT job!! They were all up on the big megatron in the Metrodome. Besides that, Rachel got a special treat and was able to help switch the bases. At about half-way through the game, all three of the bases get switched out. They rode out onto the field in a pick-up truck. Rachel was with TC the Bear (the Twins' mascot) and together they changed 2nd base. TC had Rachel jumping on the base to make sure it was in it's right place. Too funny!! Rachel got a t-shirt, an autographed picture of TC, and a baseball from a Twins practice session.

Before Rachel went out onto the field, Lance was whining that he wanted to go with Rachel and why did she get to go but not him. The batter hit the ball and up and back it came! Lance ended up getting the ball!! It was GREAT!! He was THRILLED and has carried that ball with him EVERYWHERE today. After that happened, he didn't care that Rachel got to switch the bases because he got to be up on the giant megatron ALL BY HIMSELF holding up the foul ball!! We had a wonderful night!

Rachel continues to feel pretty well. Once in a while her tummy feels funny, but it's nothing that the nausea medicine can't take away. We have one more week of chemo and then she gets a two week break. Hopefully sometime during that break she'll have scans.

I did go shoe shopping today for Rachel and found a couple of pairs of shoes that I think are cute but I'm not sure they're "sparkly" enough for Rachel's taste. I'm going to bring her shopping probably on Tuesday (Blake has a piano recital on Monday) and show her the shoes that I've found and if she doesn't like those, I'll show her a couple of pairs that I've found that I can put beads and sequins on and we'll go from there. I have to have the shoes this week as her dress still needs to be hemmed.

Rachel has actually been eating us out of house and home the past few days! We'll take it! She needs to put some meat on those bones of hers.

Specific Prayers:
~That Rachel continue to not have any diarrhea or vomiting.
~That Rachel continue to feel well during this chemo round.
~That Rachel feel well for the wedding.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure!!

Thursday, May 4, 2006 4:51 PM CDT

So far this week of chemo is going uneventfully. Rachel continues to hate the taste of the oral chemo (she gets one orally and one IV) and of the antibiotic she has to take to keep away the diarrhea, but she's taking them with the bribe of a toy at the end of the two weeks of chemo. She figured out today what she wants at the end of next week. Whatever it takes, I guess. I hate standing there pleading and begging her to take oral medicine. Sooner rather than later the pleading and begging turns to anger. That's really fun, then. :-P The toy bribery has worked wonders. If she doesn't hem and haw, give a million excuses as to why she shouldn't take it today, doesn't spit it out in her water (yeah, we've seen that be done), and doesn't vomit it up afterwards (seen that one, too) then she gets to pick out a toy at the end of the chemo round. It's working!

We attended a bridal shower for my future sister-in-law this past weekend, my sister and I are hosting one this weekend and we're planning the rehearsal dinner. It's really strange to be doing all of this without our mom. There are decisions that need to be made that we know Mom would have had an answer for. Her presence is sorely missed. Mark's Dad's birthday was this week, Mother's Day is around the corner, the anniversaries of Mark's Mom's husband's death and my Mom's death are coming up ... lots of reminders. And a wedding!! Thank God for this wedding! It's keeping us all occupied. We're also quite excited about having another person be part of our family. My brother is marrying a wonderful woman ... if he hadn't proposed I think my sister or I would've done it for him!!! :-) My mom thought highly of her and loved her, too. Now if she could only find Rachel some shoes! Tee hee!!

We pray that everything continues going well throughout this chemo round and that Rachel feels well.

Specific Prayers:
~That Rachel continue to feel well during this chemo round.
~That Rachel not have any diarrhea or vomiting during this chemo round.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure!!

Monday, May 1, 2006 8:16 AM CDT

We've found that with two weeks straight being taken up with chemo, the week that Rachel is off gets jam packed as that's when everything gets scheduled. Wow, what a week!

One of those things that got scheduled was a follow-up visit to Rachel's reahabilitation specialist. Due to our vacation to Florida and Rachel being hospitalized on both sides of that trip and then to some other unforeseen circumstances, Rachel hasn't been to physical therapy since February. When talking to her physical therapist several weeks ago, it was decided that at this point we wouldn't start up again until we saw the rehab. specialist because Rachel's therapist will be going on maternity leave and she would have to start with someone new. The rehab. specialist doesn't feel she needs to continue with physical therapy but we do need to be doing stretching exercises with her on a daily basis.

I spent ALL day Friday (literally--I shopped for 11 hours) and FINALLY found a dress for the wedding for me but no shoes for Rachel. Everything that was glitzy and sparkly were in sizes too big for Rachel. Rachel is still in what's considered toddler-sized shoes, and all the types of shoes that she would be interested in were in girl sizes--about one to two sizes too big for her. I'll keep looking, but if I don't find anything soon I think I'll just have to make her some! As my girlfriend said, "I have craft glue, Jodi!" I guess it's nothing a little craft glue and a bag of sequins and sparklies can't solve, huh?

Today Rachel starts another round of chemo. Boy, does that week off go fast. Rachel is not thrilled to be having to take the icky medicine again. After this round, it's TWO weeks off!!! WOO HOO!!! And a wedding .... Oh, we're SO excited!!!

Specific Prayers:
~That Rachel remain diarrhea- and vomit-free during this chemo round.
~That Rachel take the icky medicine and chemo without a fuss.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

Monday, April 24, 2006 8:54 AM CDT

The birthday celebrations went great and Rachel had a fantastic time. Of course, she's loving being six!! She keeps asking when she gets to be in first grade. Too funny!

We have chosen to cancel scans for today because Rachel has a cold. She started hacking up stuff yesterday and anything that's in her lungs will show up on the scan and could cause us confusion as to what is "gunk" and what is tumor. We don't need anymore of that. We want no more tumor rumors, or fungus diagnosis, or any of that. We'll just wait until she's gotten rid of her cold (which she got from Mommy, thank you very much) and then scan her.

Her oncologist wants to give her 24 more hours to see if she improves any. If not, she wants her into the clinic and will probably start her on an antibiotic. Being that her lungs are compromised from previous radiation and current tumor burden, what is a common cold for the rest of us can quickly turn to something problematic, like pnemonia, for Rachel. We won't mess around. I'm pretty sure that being that her cold started the EXACT same way mine did and is pretty much following exactly in the same pattern that mine is--just three days later--nothing's going to change by tomorrow. She'll still have a cold.

I have to say that the antibiotic we had Rachel on sure did the trick with making it through this chemo diarrhea and vomit free!!! WOO HOO!!!! Rachel is sure happy to be done taking it, though. It is HORRID tasting stuff--I tried some myself and it pretty much sent shivers down my spine and left an awful aftertaste in my mouth and I only tried a drip. We'll start it again on Sunday as chemo starts up again on Monday. One week off sure isn't much time. After this next round she'll get two weeks off because of the wedding. That will really be nice!

We're going to pick up her flower girl dress today--it finally came in! She's pretty excited about it. Now we have to go shoe shopping!!! She wants to get a haircut for the wedding ... uh, yeah. Trim off a whole 1/32nd of an inch or something being that her hair is only an inch long! What a funny girl. Maybe sparkly metallic hair extensions or something! Tee hee!!!

Specific Prayers:
~Praise God that Rachel turned six!!
~That Rachel's cold clear up.
~That Rachel's cold not turn into pnemonia.
~That Rachel continue to feel well.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

Thursday, April 20, 2006 8:15 AM CDT

I wasn't so sure we were getting her into a dress for Easter. She told me flat out the week before that she WASN'T wearing a dress because she HATES them! Okay, okay!! "I want to be like Daddy!" Guess that means pants, huh? Do you think they make Easter pants? Tee hee!! So, we went looking. She wanted nothing to do with the pretty pink seersucker pants. Nope, nothing doing. Oh, for pete's sakes. Then ... she found a skirt. A skirt???? So I started grabbing skirts. Skirts are good! The pink one with "sparklies" won out over the rest of the pile. I thought she chose well. :-) And it's not a dress .... Whatever.

She made it! She made it to NUMBER SIX!!!!! WOO HOO!!! Talking about blowing many doctors away. Way to go, Rachel!!!! She got a candle in her french toast this morning and I have to bring cupcakes into her class this morning so that we can celebrate. Those cupcakes HAD to have Shark Tales picks in them, too. I don't know where all of these things are coming from ... dinosaurs, shark tales, what's next? Bulldozers? Hey, she'd be ecstatic if someone got her a remote control car or bulldozer! She's growing up with two brothers remember. And Lance is TOTALLY into cars and big machinery. If it's big and you can drive it, he's into it! So that makes her like those things, too. She's totally had enough of princesses and the girly-girl stuff. I think she got overwhelmed with it and now wants nothing to do with it. If it has a princess on it, she just turns away.

We are absolutely thrilled that Rachel continues to feel well and has had absolutely NO diarrhea or vomiting during this course of chemotherapy. I'd almost like to kiss that doctor that recommended this drug!!! She's going to school everyday, she's playing, she's "normal". Hey, we're going out for pizza tonight--it is Rachel's favorite food! What a complete God-send!!!! Our prayers have certainly been answered!!

I don't know if I can really convey the complete joy that is in my heart today. Joy, contentment, peace. It's really hard to explain. It's surreal. We're still traveling a very bumpy road, but for now, things are okay. I pray that all her birthday celebrations live up to her expectations--I really don't think they're that high, but that she just have a lot of fun.

Scans are still set for Monday morning (April 24).

Specific Prayers:
~Praise God that Rachel continues to feel well during this chemo round.
~That Rachel continue to feel well.
~That Rachel have no bouts of diarrhea of vomiting during this chemo round.
~That Rachel enjoy all of her birthday celebrations.
~That Rachel's scans be clear.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth!

Monday, April 17, 2006 8:37 PM CDT

Easter Sunday was wonderful and Rachel continues to feel great!!! WOO HOO!!! Still not one bout of diarrhea or vomiting. Are you crossing everything you own???? (Fingers, toes, legs, arms, eyes ....) Okay, how about just continuing to pray so that you're not bound up like a pretzel? We are SO thankful!!!!

Today started week two of this chemo round and Rachel was in school today. :-) She doesn't much care for the taste of the medicine that she has to take to keep the diarrhea away--I tasted it and my thought was YUCK!! But, it's better than the alternative.

I will get her picture with her hair extensions posted within the next day or two. I'm trying to get through my recurrent training that has to be done BEFORE the end of the month (I missed a class when Rachel was in the hospital so now I have to sit at my computer and do it--ICK!!!!). I'm sure it's going to take me all week ....


Scans are next Monday.

Specific Prayers:
~Thank God that Rachel continues to feel well.
~That the medicine continues to keep the diarrhea and vomiting away.
~That Rachel's upcoming scans be clear.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth!!

Saturday, April 15, 2006 4:22 PM CDT

Rachel made it to school every day this week!!!! WOO HOO!! Right now she's out shopping with her Grandma for her birthday present. Needless to say, Rachel feels great! So far we've had not one single bout of vomiting nor one single bout of diarrhea!!!! PRAISE GOD!!!! And she's still eating like crazy!!! We are absolutely thrilled!!!! So far, so good. One week down of chemo and one more to go. Hopefully this next week will be as good as the past one has been.

I took the boys in to get their hair cut this past week. Rachel was rather mad that she couldn't get her hair cut. Uh, your hair is like only one inch long, Kiddo. Our hairstylist mentioned hair extensions. So, Rachel is now the proud owner of two BRIGHT PINK hair extensions! She LOVES them!!! They also decided to do her nails with pink polish and then put glitter on them. She was getting the royal treatment with two stylists working on her and one of the stylist's daughter helping out. I think Rachel felt like a princess!

This week has been full of reflection ... especially today. A year ago today we didn't know if she'd make it an hour, let alone through the night. A year ago today we had to make a choice about letting our baby girl die. A year ago today no one in the medical community believed we'd ever be bringing her home alive. A year ago today we experienced pain that no parent should ever have to experience. A year ago today we continued to put our trust in Jesus ... and Rachel lives! Boy, does she live!!!

We are SO thankful for the gift of life that God has given Rachel. To know that she not only experienced her fifth birthday, but will now be celebrating her SIXTH!!! The past year has been a gift, even if there were some dips in the road. We will continue on this road as long as the Lord is leading us on it. Do we like it? Not exactly. But, we have no choice in the matter. What we have a choice about is how we go through it. We could mope and cry and feel sorry for ourselves everyday but that is sure a rotten way to live. Every morning we each have a choice of how we will spend that day. I choose to spend it being happy and with a smile on my face even in the midst of a storm.

Tomorrow brings the promise of everlasting life. Talk about receiving a gift!!! May the Promise of Easter bring you happiness, fullfillment, contentment, and a peace that passes all understanding. If you don't know what I'm talking about, please email me!

Specific Prayers:
~Praise God for the gift of His Son, Jesus Christ, and the promise brought to all believers when Christ died on the cross.
~Praise the Lord that Rachel hasn't had issues with vomiting or diarrhea.
~That Rachel not have any vomiting or diarrhea with this chemo round.
~That Rachel continue to have a big appetite.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

Monday, April 10, 2006 10:39 PM CDT

Rachel's appetite returned over the weekend. She was literally eating us out of house-and-home today!! YIPPEE!!! Sure would be nice to keep that up but I'm not betting on it.

We started chemo today and so far so good--uh, knock on wood. I expected it to, though ... it's the first day. But, we're medicating her anyway. I told her oncologist that I think it may even be overkill!

Rachel went to school today and walked one time around the track (1/4 mile) for their annual Walk for Diabetes. We're quite proud of her!!

Rachel is very into her upcoming birthday right now. We've got the plans set, the invitations made and sent out, and now the count-down has begun! It started yesterday with Lance announcing, "Rachel! You only have eleven days until your birthday!" She was delighted to hear it. Her birthday is next Thursday (April 20th) and the parties are the weekend right after that.

I'm going to give you three guesses of what she wants on her birthday cake .... Princesses, you say? Nope. Try again. Barbie? Nope. One more chance. Hello Kitty? Dora? Bratz? Polly Pocket? Strawberry Shortcake? Hang on!!! That's more than one more guess!!! And the answer would be: Nope, Nope, Nope, Nope and Nope. Try: Dinasaurs. Dinasaurs? Don't ask, I don't know. It's like she pulled this one totally out of thin air. Dinasaurs? Whatever. I guess we're going to have a cake with dinasaurs on it. The boys will like it anyway ....

The time is also quickly approaching the one year anniversary of putting Rachel on the ventilator. The day that we were asked to make that horrid decision about letting her die. The day that we were told we were just transitioning her to heaven. The day that we were told she only had hours to live.

It will be one year on April 15th. It's kinda a double-whammy day, isn't it? Never thought of that before. Mark and I remember that day vividly. And look at her now. Look at her now! We're sure glad she wasn't ready to go be with Jesus!!! Wow!! That kid just keeps us shaking our heads. I pray that she just keeps astounding everyone ... especially the medical community! We need that one, big, final miracle. Keep praying!!!!

Specific Prayers:
~That the drugs we have found allow Rachel to not have any diarrhea, nausea or vomiting during this chemo round.
~That Rachel's ANC not drop below 1,000 during this chemo round.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

Saturday, April 8, 2006 3:09 PM CDT

We are home!!! Rachel is currently on two IV antibiotics which we're hoping will drop to one soon. She's feeling well and eating again! As a matter of fact, she's over at her aunt's right now playing with two of her cousins! She was SO excited about being able to do that.

We have decided that since we're going to be putting her on a drug that will supposedly stop the diarrhea during chemotherapy and since we've got a wedding coming up in May that Rachel is in, we're going to start chemo on Monday. We've counted everything out and want to make sure that she is in top form for the wedding as it would absolutely break her heart if she weren't able to wear her pretty, long dress and stand by her future auntie! When I asked if it was dumb that I wanted to move chemo around so that Rachel could be in the wedding her oncologist said, "NO!!! She HAS to be in that wedding! HAS to be!!!" Cool. We're counting on this drug helping so that the weeks of chemo are actually good weeks, too.

The drug she'll be on is an antibiotic for gut bugs, so to speak. She's currently on antibiotics for gut bugs and guess who's had normal stools since she's been on them?!?!?!? Since she started the IV antibiotics Rachel hasn't had any diarrhea or vomiting. We're hoping that's a precursor for what's to come next week! The one she'll be on will be an oral drug rather than IV. Hopefully it will do the trick. Then we'll just have to make sure we're able to handle the vomiting. Although a problem, at least it wasn't like the diarrhea.

So, we're home, we have a plan, we're pressing forward. Oh, and scans will be in about 2 1/2 weeks.

Specific Prayers:
~Thank God that Rachel is out of the hospital and feeling good.
~Thank God that Rachel's ANC never dropped below 3000.
~Thank God that we found a drug to potentially help Rachel handle the chemotherapy better.
~That the antibiotic keep Rachel's stools normal (here we are praying about poop again!)
~That Rachel not have an issue with nausea and vomiting during chemotherapy.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth!

Thursday, April 6, 2006 11:22 AM CDT

Tuesday evening after supper Rachel was feeling chilled. It got so bad that she was shaking and her teeth were chattering. No matter what we did (multiple blankets, blankets warmed in the dryer, heating pad, and sitting by the fireplace) she couldn't get warm. We took her temperature and it was normal. She did complain of a bad headache so I gave her some Tylenol. A phone call was made and we went to the Emergency Room.

Once there, Rachel had a temperature of 103.3--even with Tylenol. Labs were drawn, blood cultures done, an antibiotic was given, and because her platelets were high enough, Motrin was given. Finally, at midnight, the fever started coming down. She still didn't feel but at least she wasn't just laying in my arms moaning. She was now sitting up and had her eyes open.

We got into bed at home around 2:00 am. Rachel actually wanted to stay at the hospital. Hmmmmmmmmmmmmmmm ....

Yesterday morning, Rachel felt fine. She didn't have a fever and she was acting normal. I talked to her nurse and nothing had grown out yet from her blood cultures. Around 10:00 am I put her in a nice warm bath just to have start screaming about 10 minutes into her bath. Even though her water was nice and warm, Rachel was freezing. She had goosebumps all over her--even on her head. The water was wonderfully warm and she was shaking from cold. I quickly got her out, dressed in warm clothes, multiple blankets piled on her, the heating pad next her and laid her by the fire--her teeth continued to chatter and her hands and feet were tinged blue from cold. She had a headache but, once again, no fever--yet. Another phone call was made.

By the time we got to the hospital, Rachel had another high fever. We also found out that right after I called them and the decision for us to come in was made, the lab called and said Rachel's blood cultures were positive for bacteria. Rachel has two wonderful bacteria growing. They feel that one of them--the worst one (a gram negative rod)--is because of her horrid diarrhea that she was having. The feeling is that it allowed this icky bacteria to enter her body and take hold. Her doctor told me that we need to be very thankful that Rachel's counts are high because when they have this bacteria in kids with low counts, they often end up with dead kids. That got my attention!

Last week I asked Rachel's nurse to find out what it is about this chemo drug that causes the severe diarrhea. I was thinking that if we could figure that out, maybe we could find a drug that would stop that certain thing from happening. I would rather treat the problem then just the symptom. Let's not have diarrhea at all rather than finding something to make it stop.

While being admitted to the hospital yesterday, a new oncologist was tailing our doctor. She was giving him a quick history of Rachel and we were discussing her diarrhea bouts with the new chemo. This doctor said that they had used this drug quite a bit at the last place he was at--they haven't here as it's a newer drug. He said that this chemo lets a certain bacteria grow rampant in the intestine which causes the bacteria and that there is a certain antibiotic that will stop that from happening. WOO HOO!!! So, next round we're going to use this antibiotic and see what happens. I'm very excited about it! If we can keep her feeling good during those two weeks, that would be incredibly awesome! This chemo isn't making her counts go in the toilet by any means and we're able to do it at home. If we could keep her feeling good during it this could turn out to be a very good deal!!

Anyway, we're in the Children's Hilton probably until tomorrow. Thankfully, Rachel has been fever-free since yesterday afternoon and we haven't had any more teeth-chattering-chilled-to-the-bone-can't-get-warm episodes. Actually, she's doing great and is acting normal. But because she's on three antibiotics right now and the sensitivites for which antibiotic is the right one to send her home on aren't back from the lab yet--and probably won't be until tonight or tomorrow--I'm expecting we won't be out of here until tomorrow sometime.

Thank you for your continued thoughts and prayers!

Specific Prayers:
~That the bacterial infection go away.
~That Rachel remain fever-free.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

Tuesday, April 4, 2006 6:34 AM CDT

The diarrhea did stay at bay long enough for us to make it to the movie (I did have a bag of extra clothes with "just in case")!! She did great!! We also LOVED the movie--Ice Age 2. After being home for awhile, the diarrhea started again. I'm so glad that we were able to sneak out for a little while!

Early Saturday morning, she had a bout of diarrhea and then NOTHING for the rest of the day ... until late afternoon when the vomiting decided to return and the diarrhea decided it wasn't going to be out-done and came again, too. Sunday was horrid. Although she only had one bout of diarrhea and actually had a stool that was beginning to take form (didn't know you'd ever pray for formed poop now, did ya?!?!?!) the vomiting seemed uncontrollable. She couldn't keep even the slightest drink of water down.

Monday was a confusing day with the morning starting out just fine but the afternoon brought more diarrhea and vomiting. Rachel will be staying home from school again today in hopes that TODAY will be the magical day that we have nothing nasty coming from any exit/entrance point on her body. I had to kinda giggle last night when I realised that my house has taken on a whole new decorating theme ... ice cream buckets in every room! You know, a room just isn't complete unless it has a plastic tub of some-sort sitting within arms reach of you! Same thing with your car! A bucket has become Rachel's new best friend ... or is that Mommy and Daddy's best friend???

We started this chemotherapy 16 days ago. Rachel had her first vomiting bout 15 days ago. It has been 13 days since it has been an all-day affair of vomiting and/or diarrhea. THIRTEEN days!! And we're supposed to start this again on Monday. Are you ready? I don't think we are. Heck, last night was the first night in two weeks that Rachel wasn't up in the middle of the night with vomiting and/or diarrhea and then moving to our bed! She actually slept ALL NIGHT in her own bed!!! Happy Dance, Happy Dance!! You'd think she was an infant or something.

We are seriously, seriously, SERIOUSLY considering putting chemo off for another week. The original study done with the drugs that Rachel is on had it being given for two weeks and then being off for two weeks. A doctor at MD Anderson Cancer Center in Houston who has given this therapy to quite a few kids--that BOTH Rachel's doctor and I have been in contact with by a strange fluke--has recommended that we give it for two weeks and then only one week off ... if she could handle it. Rachel's counts are actually doing GREAT!! At last check her counts were:
WBC: 4300
ANC: 2600
Hgb: 10.6
Plt: 126,000
These are GREAT ... for a chemo kid! Although the chemo doesn't seem to be taking a toll on her counts, her GI tract sure is taking a beating. If her counts were too low, we wouldn't start chemo but wait until they had recovered so it only makes sense to do that for her insides, too. And, when you don't feel good, you don't eat. And even if you do eat, it exits right back out of you. We're thinking she needs two weeks to put some food back into her system! I think tomorrow will be the deciding day. If she's still doing vomiting and/or diarrhea tomorrow, there's no way we can start on Monday.

Because we've been doing these IV vitamin treatments, we didn't have any issues with Rachel becoming dehydrated. Rachel is getting fluid full of vitamins and electrolytes everyday and because they are salty, whenever she's hooked up she drinks like a fish. Keeping her hydrated hasn't been a problem! Whew! Although on Sunday, we had to shut the vitamins off because she couldn't keep anything down. Every sip of water she was drinking she was throwing back up again. Can't have that. Why feed the problem?

Rachel is up now and complaining that she's hungry! Oh, goody, goody!!!! I hope she actually eats whatever I end up making her!! And most importantly ... that it stays in her long enough to make a difference!

Specific Prayers:
~That Rachel's vomiting and diarrhea stop immediately.
~That Rachel's appetite increase ten-fold.
~That Rachel put some weight on before the next chemo round.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth!!

Friday, March 31, 2006 11:38 AM CST

Newsflash! Rachel pulled one over on her Mommy. I know, we're all SO surprised! Guess what that little stinker did?!?!?!?!? Admitted to her Daddy that she didn't swallow the M&M's but hid them under her tongue!!! So, no, we haven't learned to swallow pills. I explained to her that it was okay if she didn't get it right away and that Mommy would not be mad. We tried again several times but that M&M just sat on her tongue like it was glued there. Darn it! We'll keep practicing. Heck, these are the MINI M&M's, too!!

As far as the diarrhea is going, the one drug gave us a three hour break from it all. Then it started up again and she had three more episodes of diarrhea and then nothing. NOTHING!!!! 4:30 yesterday afternoon was her last one until 1:00 in the morning. We were only up once in the middle of the night instead of our normal twice--which is a good thing. At that time, I gave her a new medicine that I picked up last evening. She hasn't had a bout of diarrhea since!!!!!!!!!!!!!! WOO HOO!!!!!! Rachel has gone almost 11 hours with NO diarrhea. We are doing the happy dance over here!!! I'm actually heavily considering going to the movie with her today.

Blake and Lance were picked up this morning by my friend and her kids (THANKS, Theresa!!!!) to go do some fun things and then they were going to the movie at 1:00. Rachel and I may just meet them. She wants to go! She's taking a nap right now and she told me to wake her up when it's time to go to the movie. I would've bet money that this just wasn't going to happen today. We may have finally found the ticket. Praise God!!!

Specific Prayers:
~Thank the Lord that Rachel has had a break from the diarrhea.
~That the diarrhea not return.
~That Rachel not have any nausea, vomiting or diarrhea for the rest of this treatment course.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

Thursday, March 30, 2006 11:58 AM CST

How's 15 bouts of diarrhea in a 24-hour period for ya?? Oh, man. It's just pure water coming out of her. I feel so bad. And, OF COURSE, now her bottom is sore.

Today I have been on the phone with the homecare pharmacist and in heavy discussions with him and our homecare nurse. Today it was decided to give her a drug that they keep on hand for the nurse to give in case she like dumps her entire insides while the nurse is giving the drug. It's supposed to constrict everything. They decided that 15 bouts of diarrhea--and already 4 by the time the nurse got here this morning at 9:00, was too many and called for a more drastic measure to be taken. We'll see how it goes. She's had one bout since given the drug but it was just dribbles!!! Everyone is getting back to me on how long this drug works, how often she can have it, etc. etc. They are also finding out more information for me on other things that I've proposed to them that have come from parents of other chemo kids. We WILL get a handle on this. I don't want Rachel to not have a quality of life as she goes through this chemotherapy. That's so totally unfair.

So, we continue in the same manner and pray the cancer goes away so this ride can end--I don't know about you, but this carosel ride is making me sick.

Specific Prayers:
~That Rachel's diarrhea cease immediately.
~That Rachel's vomiting and and nausea remain non-existant.
~That Rachel not have any long-term side effects from chemotheray, radiation, or surgery.
~That Rachel be given the miracle of a cure on earth.

Wednesday, March 29, 2006 1:03 PM CST

I'm tired of diarrhea. Ten bouts of it in a 24-hour period is about ten bouts too many! So far today we're at three. Yesterday the cramping was horrid. She just sat on the toilet and cried and screamed. As a parent you feel so helpless. I'm now looking into other remedies besides what the hospital has given me. I KNOW there has to be something else out there to help her! Thank you to those of you who have emailed me about things used on your child who was in treatment! At least the nausea and vomiting has stopped ...

Gotta wonder how long that's going to last though. As this medication they gave her for two days and then discontinued wears off, is the diarrhea going to get less and the nausea and vomiting more again? We sit here not knowing where we're going. Right now she's playing games with Lance and is totally "normal". That can change on a dime.

Doing this chemo in-home sure has been nice!!! It's been a huge gift of time. They've given me a minimum of five hours per day back into my life that would've been spent driving and in the clinic. I think I can EASILY get used to this!!! I'm tied to home, but that's okay. As long as I can do things at home I don't care! It's where I most want to be anyway. I'm still trying to catch up from last week when I was sitting in the clinic everyday!

Specific Prayers:
~That Rachel's nausea and vomiting not return.
~That Rachel's diarrhea cease immediately.
~That Rachel's ANC remain above 1,000.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth!

Monday, March 27, 2006 10:31 PM CST

Yesterday we were able to get in a couple of games of bowling before the diarrhea started. We went with Mark's Mom and one of our nieces. Rachel is really becoming quite the bowler.

Today on our way up to chemo, my cell phone rang. It was Rachel's nurse telling us that they want two days rest between the chemo weeks so we should turn around and go home. Thank goodness we weren't TOO far from home. Homecare is now going to come out and give the chemo Tuesday through Saturday! WOO HOO!!!! That means we won't have to be driving up to the clinic everyday!!!! That means we may actually accomplish something this week at home!

Rachel's diarrhea has continued today but she's at least able to control it pretty well and each bout isn't that large ... heck, she hasn't eaten. This evening, when asked what she wanted for supper, she said she was hungry and wanted to go out for pizza--her favorite food. We said, "OKAY!" So we went out for pizza where Rachel actually did proceed to eat more than she has for quite a while!! Mark and I were quite happy about that. And the fact that everything has stayed down because she hasn't had nausea is really great, too. We'll see if it makes the diarrhea increase. She was complaining about abdominal pain tonight. We'll see what more chemo does to the diarrhea.

They have decided to take her off of the one drug that we have been giving her for anti-nausea because of those possible contradictions. The pharmacist that is in the clinic wasn't liking it at all, even though those on the hospital floor didn't get involved with it. I don't know what to think. They are now going to try her on another drug and we'll go from there. This one may even help with her appetite. It's possible that the increase in diarrhea has been from that one drug. That would be great if it went away once the drug wears off!!

By the way, Rachel lost her very first tooth last week! She was SO excited!!! I was glad that it happened when her platelet count and white count were high! Man, if she'd had low platelets, she probably would've bled to death!! Those hummers REALLY bleed!!! The other exciting news is that Rachel learned to swallow pills today!!! WOO HOO!!!! We are all so excited about that one! This could make things MUCH simpler around here.

The kids are looking forward to Friday as Ice Age 2 comes out. We've got tentative plans to go see it with some friends. Hopefully Rachel and I will be able to go with ... all depends on how she's feeling.

Specific Prayers:
~That chemo at home go well.
~That Rachel's vomiting and nausea continue to be under control.
~That Rachel's diarrhea cease immediately.
~That Rachel's ANC not drop below 1000.
~That Rachel feel well this week.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth.
~For Jared's miracle (he is doing better!!!)

Monday, March 27, 2006 6:18 AM CST

Saturday was a much better day for Rachel. She again only had one bout of diarrhea and we started another drug for the nausea. In the discussions I was having with the nurses and doctors, they were coming up with different drugs and several of them were more relaxers and put-her-to-sleep drugs than anti-nausea drugs. Sometimes that's okay, but not all day long, everyday for the next six months or however long she ends up being on this chemo. The one that got more recommendation than the others was one where you give it for three days once a day and it lasts for five days. Sounds good. Only problem is that it MAY cause the side-effects of the chemo to be more pronounced. Not good. As always, there is a "maybe" in there. We decided to try it with my last statement being, "I'm not going to trade in stopping one end just to reek havoc with the other end".

The drug has worked great. Rachel hasn't had any nausea or vomiting at all since Saturday morning when she vomited up everything she had injested ... including her oral chemo. Uh, yeah. Only problem, now she's having abdominal cramping and she's had a couple of bouts of diarrhea yesterday. Mark and I were up with her quite a bit last night. As usual, we're not sure if this is from the anti-nausea medication or if this is just the building up from getting more and more chemo. We'll see what's recommended today ... do we stop the drug and see if the diarrhea and cramping are better or do we continue with the drug and see how bad it gets and then take her off the drug and see if it gets better? I don't know ... I just don't know.

It's spring break for our kids and they have all week off from school. Rachel gets to spend hers in the clinic getting chemotherapy everyday. Would be nice to be able to do some things with all three of the kids after chemo, but we just don't know how Rachel is going to feel. I'd hate to take the kids skiing or something fun that they've been wanting to do and then Rachel spends it in the bathroom. I know when I don't feel good the only place I want to be is home. We'll see how each day goes, I guess.

Right now she's sound asleep. She did open her eyes and look at me as I was hooking up her antibiotic, but she just shut them again right away and never opened them back up or moved a muscle. She hasn't eaten hardly anything for several days. Mark and I are quite concerned about this. We need to get her feeling better. Who wants to eat when you don't feel good? I know her weight is going to be down. I know they are going to be all over it today at the clinic. It's quite the balancing act. Hopefully we'll get everything at an equalibrium this week.

Specific Prayers:
~That Rachel's nausea, vomiting and diarrhea cease immediately.
~That Rachel eat ... a lot.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth.

Saturday, March 25, 2006 5:39 AM CST

The diarrhea started yesterday at noon--RIGHT after she got home from school. She only had one bout of it so I'm not sure what to make of that. Not like she's eaten much in the past few days ...

The nausea and vomiting has really started. She was sick to her stomach all day yesterday and last night since she had chemo. I've been giving her the anti-nausea medication on a regular basis. You could set your clock by it, actually. Poor honey. I feel so terrible and there isn't anything I can do besides keep giving her medicine. At 2:00 am she was vomiting and there wasn't even anything in her stomach to vomit.

That's another issue I'm shaking my head at right now. Her appetite has defineately waned already and now whatever she is eating she's throwing up. If this nausea and vomiting are going to continue, we've got to get it under control or she's going to end up with another tube to feed her with. We really don't want that.

This is so disheartening. We were told that this chemotherapy regiman was tolerated well. Personally, I don't think this is well. Today is the last day of one of the chemo's. Next week she will only be receiving one. Maybe it will be better next week .... maybe. If not, we're going to seriously have to think about this.

Specific Prayers:
~That Rachel's nausea and vomiting cease immediately.
~That Rachel have no more diarrhea.
~That Rachel's counts remain high.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.
~For a miracle for Jared.

Friday, March 24, 2006 9:36 AM CST

I never got that nap. Nope. Instead I got even less sleep because we ended up in the Emergency room at 11:00 at night on Wednesday night.

Wednesday evening Mark and I noticed that Rachel's face was very red and flushed and very warm. She said she felt fine. I took her temperature and it was 101.4 degrees. Hmmmmmmm ... right on the border of needing to call the doctor. I put her to bed knowing that I would need to unhook her IV antibiotic in 45 minutes and that I would check her temperature again.

When I walked into her bedroom 45 minutes later, the first thing I noticed was that her breathing was rapid. Hmmmmm ... When I went to unhook her antibiotic, it was like her body was burning up. Oh, no!!! I would've bet money that her temperature was at least 104 degrees. She was just radiating heat. I took her temperature and it was 101.8 degrees. What? I took it again. Same thing. With all of my fussing with her, she woke up. While awake, she had grunted breathing.

I called the doctor who said she wanted Rachel to be seen. I threw a bag into the truck, dressed an unwilling Rachel and put her into the truck, and drove up to the hospital. On the way up there she started singing. You know, sometimes you just have to shake your head.

Once there, the nurse took her temperature (which was now 99.8 degrees) and couldn't believe that's all it was because she was so hot. Her blood pressure was lower than it had been earlier that day but her breathing was now normal. Because her counts were high, her oxygenation was good, her breathing normal and her temperature down, they gave her a dose of antibiotics and let us go home. Rachel's face was still very flushed and warm, but the rest of her body was better.

We got home around 2:30 in the morning and crawled into bed. When we went into the clinic for her chemotherapy yesterday, they figured out that Rachel is having a histomine release (an allergic reaction) to the chemotherapy. Oh, yippee! So now Rachel needs to have Benadryl at suppertime every night to counter-act the histomine release. Sure hope this works as we need to be able to give this chemo a fair chance to work!

This morning, Rachel was complaining about her tummy and needed to have medicine for it. It seems we're going to have more physical side effects with this chemotherapy than we have with some of the past ones. We'll deal with it.

I'm already tired of driving up to the clinic everyday. I keep telling myself, "It's better than being in-patient. It's better than being in-patient." But automatically my brain goes to, "There's no place like home. There's no place like home." Yeah, whatever. Maybe next round! :-)

Specific Prayers:
~That Rachel's allergic reactions not become severe and be able to be handled with Benadryl.
~That Rachel's nausea cease.
~That Rachel not have diarrhea with this chemotherapy.
~That Rachel's ANC (a blood count) not drop below 1,000.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be granted the miracle of a cure on earth.
~For a miracle for Jared.

Wednesday, March 22, 2006 4:21 PM CST

Well ... the new chemo. One of the two is an oral drug--pill form. Rachel doesn't swallow pills yet. It is defineately something that we will be working on ... probably this weekend. We're breaking apart the capsules and putting them into "something". Yesterday, the nurse tried pudding. She opened up the capsules into a spoon and then put a bunch of pudding on top of it. That pretty much went over like a lead balloon. Rachel cried and screamed and threw a complete fit. It wasn't pretty. She was spitting it back out and I was catching it with the spoon--she HAS to take it and none can be wasted ... it's chemo for pete's sake! We gave her a break and then I decided that everyone except me should leave the room. I explained to Rachel that I hated this, too. I hated the fact that she had to take chemotherapy. I hated the fact that she had cancer. I hated the fact that she had to take gross medicine. Tears started trickling down my face as I talked to her. She touched them. I continued to tell her how much I hated all that was happening. Then I told her why it had to be this way. I also told her that together we'd find a better solution for the medicine but that today she had to take it this way. She took it like a pro then.

Today I got to mix the oral chemo at home. I have to wear gloves and a mask and work inside a plastic bag using disposable cups, bowls, syringes, spoons, etc. Anything that touches the chemo must be disposable. And we're sticking this stuff inside our child .... Today I mixed it in two teaspoons of orange juice. Rachel said, "I can still taste it." She keeps wanting me to taste it. Uhhhh ... can't do that--it's chemo. And we're sticking this stuff inside our child ... After giving it to her through the syringe, I had to put the syringe in a bag and throw it away. It can not be reused. One last time, and we're sticking this stuff inside our child. Man, I really hate chemo.

We gave Rachel a medicine for nausea yesterday before she got the IV chemotherapy. She never had any nausea and never needed any more anti-nausea medication. Today, Rachel's nurse asked how it went with the nausea and Rachel told her she didn't want any medicine even before-hand. It's an IV med so it's not like she has to swallow it or anything. We decided not to give it to her then. She never did need it for the last chemo regiman she was on so this wasn't totally surprising. She got the IV chemo, which runs for an hour, with no problems. She got unhooked and we were just putting our coats on when I went running for the paper towels just in time to make a catch of Rachel's lunch that she was now vomiting up. The nurse was still walking down the hallway (which isn't long) from leaving our room after unhooking her. I just yelled to the nurse that she needed medicine. Very quickly there was a bucket brought and then medicine. Rachel's tummy soon felt better. We left the hospital and Rachel fell asleep for about 20 minutes. After her nap she felt great. She is now outside playing with Lance and just told me that her tummy is better now.

We'll obviously be giving her the anti-nausea medicine before each treatment and we'll be watching for tummy problems now that the medicine should be wearing off. This chemo is also known for causing severe diarrhea (once again, and we're sticking this stuff in our kid). Boy, I'm looking forward to this one. Did you notice the SEVERE?? One of it's "common" side effects is SEVERE diarrhea. Isn't that just nummy? They have already sent home THREE bottles if Imodium. Not one, not two, but THREE bottles. The diarrhea has yet to start, but I've been assured that it will. Some kids it starts right away, and some it takes several days. I've been informed that by the weekend we'll have it. I'm so excited. I already feel bad for her. Who knows if she'll even be able to go to school. Hopefully we can stay on top of it so that it isn't as unpleasant as I'm envisioning.

At this time, we are going into the hospital every day. Hopefully by next round, we'll be able to do it at home with only going in for check-ups once a week. I'd even take twice a week for check-ups over EVERY day!!! The goal is to do chemo on Week 1, do chemo on Week 2, and then have Week 3 off just to do it all over again. So, that's a 21-day cycle with two weeks of it being doing chemo. Sure hope this is the one that finally gives us what we want ... remission and cure.

It's going to be four years this July that we've been fighting this. I'm tired. I want a life. I want a childhood for Rachel. I want to make plans. I want to plan HER wedding! Oh, I'm whining. I need a nap. We continue to do the antibiotic twice a day and it runs for 2 1/2 hours which means I'm up early everyday to make sure that it's in before she leaves for school. Yes, I need a nap. I'll be quiet now.

Specific Prayers:
~That Rachel take her oral chemotherapy well.
~That Rachel not have diarrhea.
~That Rachel's nausea be handled with one dose of anti-nausea medicine.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel be given the miracle of a cure on earth.
~That Jared be given a miracle.

Saturday, March 18, 2006 6:49 AM CST

Thankfully, everyone went to school yesterday! YIPPEE!!! Now with that behind us, we move forward into the yonder not knowing how things will turn out.

We've made a decision about chemotherapy and it will start next week. This chemo is given Monday through Friday for two consecutive weeks and then there's one week off just to start it all over again. At this point in time, we will be needing to go into the clinic every day for those two weeks. Thank goodness it can be given as an out-patient therapy. Driving up there everyday for two weeks straight is going to be really, really icky but it beats having to be in the hospital for it. Some of the studies that I've read on this type of chemo have actually done it in-home after the first initial round to make sure the child handles the chemo well. Now THAT would be nice and it's actually something that I've presented to Rachel's oncologist who thought at first I was nuts until I pointed out that a doctor she knows very well at another facility does it that way. Of course, our hospital doesn't have a "policy" for in-home IV chemotherapy usage. They are now working on one! Tee hee!!! They are getting LOTS of encouragement from me! I've become a one woman cheerleading squad! Don't ask about the outfit ... :-)

Because the decision wasn't made until yesterday afternoon, and yesterday was a Friday, chemo won't actually be starting until Tuesday because of the logistics of getting everything pulled together on the clinic's end with paperwork and such. They just couldn't get it done in a couple of hours time. So, this first week we will be in clinic Tuesday through Friday and then on Saturday we will do the chemo as an out-patient on the hospital floor.

If the hospital doesn't get an in-home policy, this is really going to be a time consuming regimen but what do you do??? The way things are looking, Rachel should still be able to go to school--as long as she's feeling well enough to do so, and then we'll go to chemotherapy after that. One of the drugs does need to be given on an empty stomach so that could be interesting to get the timing on that figured out but, as always, we'll get 'er done.

Several people have talked to me about not losing my faith--they're afraid I will. I guess if several people have mentioned it, more are probably thinking it. So I want to touch on that topic.

I will not lose my faith. Even if Rachel dies, I won't lose my faith. I can't turn my faith on and off like that. I believe in Jesus Christ as my Lord and Savior and all of the promises His death on the cross has brought ... how do you change your mind about that? I can't.

My faith has brought me way too far to just turn my back on it. I lean on my Lord to get me through this difficult journey. I talk to Him. I cry to Him. I ask His guidance. He has not wronged us. Satan has. It is Satan that I want to turn my back on. It is Satan whom I hate. It is Satan that I want nothing to do with. The more Satan hands us, the more I hate him. It doesn't make me hate God. God didn't do this to Rachel. Yes, He allowed it, but He didn't outrightly do it. It is the sin in the world that has caused disease. Sin is from Satan. Again, God has allowed it but I believe He's using it for His good.

Too many people have told me or emailed me their stories about how Rachel has made such a difference in their faith. They've come back to a faith that they were no longer practicing, or the faith they've already had has deepened, or they've found a personal walk with Jesus, or they've actually decided to find out who this Jesus person is. How do you turn your back on that? How can I stand here and say that nothing good has come from this terrible situation when I hear that? I can't.

Why it has to be this way, I don't understand. My earthly mind can't comprehend it. But it's the way it is. If just one person finds eternal life through a relationship with Christ won't it all be worth it? Standing here, in this realm, it's hard to say that it will be but something tells me that my mother is already screaming YES!!! When we all pass over and shed our earlthy understanding for something much more, when it finally all makes sense, I'm sure we'll feel that every needle poke, every surgery, every hour of dripping poison, every day of agony will have all been worth it if just for one person. And if there's more than one person ... oh, my.

No, I won't lose faith. It's an integral part of who I am. To lose my faith would be to lose myself. I'm not willing to do that. It would also mean handing Satan the trophy and the winner's ribbon. Uh-uh, no way. Satan keeps taking a stand and we just stand right back. Not giving an inch. Not one measly inch. Even if Rachel dies. Not one inch. We pray we don't find out, though.

Of course, we hope, we pray, we ask for Rachel's miracle. Satan is strong but God is stronger. God CAN give Rachel a miracle. He can. He can also say NO. We don't know the big plan. Even if we did, we wouldn't understand it while still on this earth anyway. And so, we pray, we plead, we bargain for Rachel's miracle. And believe. Believe in the promises that have been given to us through Christ, believe in God's ultimate plan, believe in miracles. Rachel's miracle. I believe.

Specific Prayers:
~Thank the Lord for His guidance in reaching a decision on Rachel's upcoming treatment.
~Thank God for His Son, Jesus Christ, and the promises He brought.
~For a miracle for Rachel.

Thursday, March 16, 2006 7:46 AM CST

Thank you for your continued prayers as we struggle through yet more life-altering decisions.

Tuesday evening Blake ended up on the toilet with a bucket in his hands. Poor kid had it coming out of both ends for two hours. Then a bit after midnight I got that dreaded, "MOM!!!!!!!!!!" and ended up sitting with him for another two hours as he repeated the earlier scenario. He just wanted to die!

Wednesday morning Lance was acting a bit different from normal so I kept him home, too, and by 9:00 yesterday morning he was running a fever and not long after that he was in the bathroom vomiting.

I ended up having all three of them home with two of them sticking close to buckets and having dibs on bathrooms. There was a couple of times that I had them both in their respective bathrooms at the same time. Poor kids. Heck, poor kids ... poor me! Tee hee!!! I called my dad and told him I didn't want to be a Mommy anymore! I had two with intestinal flu and one with cancer. Nope, I was done! Yeah ... whatever!

Even with all the pooping and puking going on, I did steal some time to do research. I really am tired of research. Not that I agree with it, but I do see why some people just nod their head and do whatever the doctor says they should. Even if it's not the best option out there ... it's easy!

We have decided that at this time, we will not do the biopsy because it's just not going to give us all the answers that we want at this time. So why put her through it? If need be, we can always do it later. We have also chosen to not put her into a chemotherapy study that was offered to us. It was a phase I study where they try and find the maximum tolerable dose of a drug. What that means is that you have to go PAST the maximum tolerable dose to find out what it is and can get pretty sick in the process. There was only one slot left in the study and they wanted us to hurry and make a decision because they figured the slot would be taken quickly (there were two slots left on Tuesday and only one yesterday). Rachel would've had to have had a bone marrow aspiration done (painful) and have to meet some other criteria, too, and we just decided that if someone else wanted that spot then they should take it!

Being that Rachel was already on chemotherapy and we weren't planning on stopping the chemotherapy right this moment even if her scans had been clear, we figured our best bet is to continue with chemotherapy but switch the drugs she's on. Of course, as with every decision we have to make, there are multiple opinions out there as to which way to go. The oncologist thinks one thing, the pathologist thinks the total opposite. WHY is that????

So, we are left to decipher it. Oh, what joy. I'm not the expert but when the expert's disagree .... it's almost like "Let's Make A Deal". Do you want what's behind door number 1, 2 or 3? There maybe the grandprize behind the door you choose, but you may get the boobyprize. You go into it with your 33% odds and you just don't know. So, we're doing research and weighing our odds.

Thank you for your prayers for my grandmother. She's doing amazingly well. She doesn't seem to have any paralysis or loss of movement but will still be doing physical therapy over the next week in the hospital.

Jared is still hanging in there as far as I know. Thank you for your prayers for him and for signing his guestbook. I know the family appreciates it because I know how we appreciate knowing when you're thinking and praying about us.

Specific Prayers:
~For continued guidance as Mark & Jodi make decisions about chemotherapy.
~For healing for Blake and Lance.
~That Rachel and Jared receive the miracle of a cure on earth.

Tuesday, March 14, 2006 9:56 PM CST

It is with great frustration that I write this journal entry tonight. We got news today that we just didn't think we'd get. The tumor rumor seems to be true. Rachel's oncologist is now back in town and after much discussion with yet another radiologist it seems that although her fungal issue is definately clearing up and getting better, her scan is showing that there is possibly new tumor growth in her left pleura space. The lung sits inside a bag and it is growing in the space between the lung and the lining of the bag. Rachel's oncologist says she can't be 100% sure that it's tumor but that generally fungas doesn't look like this. There are always "generally's" and possibly's" and "maybe's" in every sentence now.

The only way to determine if it's tumor or not or if there is fungas there or not is to do a biopsy. Yet, Rachel's oncologist isn't so sure that the biopsy will give us the full answer, either. In weighing the pros and cons of biopsy, the cons are quite stacked. It would require another surgery. Rachel has already had lung surgery and with all of the scar tissue build-up she's not even sure they'd be able to get there by either a "full" biopsy or by needle aspiration. It could require a chest tube which could mean a lengthy hospital stay. We know that it would lower Rachel's immune system (surgery always does) and that could allow the cancer to spread more. The surgeon being in there could spread the disease more. She would have to fully recooperate before treatment could begin. And the big clincher, her oncologist just isn't positive it would show show us everything we want to know. But, do you just treat something that you're not 100% of what it is with drugs that cause both short- and long-term effects? Either way, we're in a bind. Also, since they believe this is tumor and it grew while she was on chemo, that just isn't good news.

Rachel's doctor said that because this is the third chemotherapy that Rachel has been on and because she grew tumor while being on this past one, she feels that Rachel's tumors will probably always respond at first but then become chemo resistant and grow back and that we will eventually run out of options.

She gave us the run-down. We can either treat it as if it's both fungas and tumor and gave us some choices on different chemo options or we can treat it as if it's just tumor or just fungas. Or, we can do nothing and let it take her. "There were a lot of people here who were willing to do that a year ago ... but you weren't and look where she is today," she said. No, we're not going there yet. If she were suffering, well, that becomes a whole different story. Rachel is far from suffering.

Where do we go from here? We don't know yet. It's back to the research. It's back to the questioning. It's back to listening for answers to prayers. Please pray for us as we go through this ... again.

On top of this, Jodi's Grandma (her Dad's Mom), suffered multiple small strokes and was taken by ambulance to the hospital today. Vera, who is 90, has been quite healthy up until this. She was incoherent but has regained conscienceness and was talking. Please pray for her full recovery and if that is not to be for peace and comfort for her family.

~Specific Prayers:
~For discernment about treatment options for Rachel.
~For direct answers about biopsy.
~For a miracle for Rachel.
~For a miracle for Jared.
~For healing for Vera.

Sunday, March 12, 2006 2:33 PM CST

Rachel's CRP--a measurement of inflammation/infection--more than doubled from last Wednesday. Because of this, it was decided to keep her inpatient for another day. Although she was running a temperature at 4:00 am yesterday, she hasn't had one since. On Saturday she was feeling just FINE! She wanted to play games, go the play room and just be FIVE. I, on the otherhand, wanted to crawl into her hospital bed and be left alone. I was running a fever and felt like I had been run over by a Mack truck. Every joint hurt--including my toe joints. All I wanted to do was to crawl into bed and be left alone but I now had a "sick kid" who wanted to play! ARGH!!! You just can't win. I was feeling better by last evening and we were cut loose late this morning.

As this cancer world would have it, we left on a sour note. One of the "cancer mom's" that I've gotten to know came into our room this morning and said, "I just want to wish you luck." She was obviously upset and I asked her what was wrong. She broke down and said that they were taking their son home to die--this was after hearing from her on Friday that they were going home on Saturday ... and not with hospice involved. Things in this world can just turn on a dime. Our friend Jared needs a miracle. He needs one RIGHT NOW! Please pray for him and his family. His website is: http://www.caringbridge.org/mn/jaredtomala

We are home, although tired, we are okay. One almost feels guilty saying that when you know that there are families out there who are having their hearts ripped out.

~Specific Prayers:
~For a miracle for Jared.
~Thank the Lord that Rachel doesn't have pnemonia or any other bacterial infection.
~Thank the Lord that Rachel's fever dropped and that she was able to come home.
~That Rachel's lung infection be completely healed THIS week.
~That Rachel not have any long-term side effects from radiation, surgery or chemotherapy.
~That Rachel be given the miracle of a cure on earth.

Friday, March 10, 2006 9:21 PM CST

Things have changed, once again. I got a call from Rachel's teacher and I ended up going into school to get her because she wasn't feeling well. Her temperature at school was 99.8 degrees. Before we got home she started doing the grunted breathing. When we got home, she felt quite warm and she made a b-line for the couch and curled up under a couple of blankets complaining about being cold. I took her temperature and she was up to 103.4 degrees. I called the hospital and they, of course, wanted to see her and they told me to pack a bag--just in case. I packed a bag and checked her temperature which was now 104.3 degrees. EEEGADS!!!

We got to the hospital and they drew several types of blood cultures on her for bacteria and for the fungus and then gave her tylenol and a cool wash cloth. She was freezing and didn't want to take her coat off and all of us adults wanted to strip her down! It was decided to take another chest x-ray and then we were able to get her coat off of her. Rachel was absolutely miserable. The temperature came down to 102 degrees but seemed to want to hang there. They decided that since they didn't know why she was having this high temperature that they wanted to keep her in the hospital for observation, so she was admitted. Of course, I was supposed to leave town for a two-day class to keep my flight instructor rating current. That got the big old kabosh and I'll have to figure out another way to get that done before the end of April.

Rachel's temperature finally came down, with the help of more and more tylenol, and she actually wanted to take a bath and play games on the computer. She was sitting near 100 degrees and has now gone to sleep. They aren't sure if this is being caused by her lung fungus, from a bacterial infection, or from the "crud" that's running rampant through the population right now. I have two friends out sick, my dad is sick, Mark's mom has been sick off-and-on, the school's are full of it and I've heard several families just keep passing the intestinal flu back and forth and have been dealing with it for six weeks. ICK!!!!!

Rachel has had a couple of bouts of diarrhea since we've been admitted so that's pointing to a virus. But, Rachel's lungs are crackling a bit so that may point to more of a fungal thing or pnemonia. The first glance at her chest x-ray today said that there was no change from last week which doesn't play for the pnemonia case but we'll have to wait for the final report which should be out in the morning. Also, if she's got a bacterial infection, we could know as early as tomorrow morning from her blood cultures or as long as 48 hours. We, and they, are hoping that they'll either get it figured out in the morning or that she'll at least be feeling better because then we'll get to go home. For now, we sit in a waiting pattern.

Rachel hadn't been hospitalized since September and now this is the second time in the month of March. We're really hoping that we can get to the bottom of this and to the fungus that we know is still there. For some reason, pictures of almost a year ago continue to flash in my head. We don't ever want to see her that sick again. We don't ever want to have to make decisions like we did then again. We don't ever want to be in that position or anywhere near it ever again. Being in the hospital is just one step closer to ending up like that again and I, for one, don't like it.

For now she is sleeping peacefully and hopefully we'll have some answers in the morning and be on our way home. Please pray for Rachel's healing.

Specific Prayers:
~That Rachel's fever end.
~That Rachel's fungal infection heal within the week.
~That Rachel not have pnemonia.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth.

Wednesday, March 8, 2006 3:08 PM CST

Only the very preliminary results are back from Rachel's CT scan. I hope to have the written reports from both the PET and CT in my grubby hands tomorrow! Anyway, the oncologist said that when she called the radiologist to get his initial reaction to the scans from today she could here him pulling everything up and then he said, "Cool, it's better!" We'll take it!!!! :-)

The initial take was that the area in the lower left lobe was smaller! Doesn't make very good supporting evidence for the tumor rumor!! WOO HOO!!! Everything is pointing to the fungus and she will continue on her IV medications into next week for now. She will continue to be off of chemotherapy until her lungs are healed.

Rachel is feeling well and her cough is decreasing. She should be able to go to school tomorrow and I will hopefully have the written scan results and know exact sizes of everything. But for now, the preliminary is good! Praise God!!!

~Specific Prayers:
~Thank the Lord that her CT looked better than that last one.
~That what is in her lungs is truly not tumor.
~That Rachel's fungal infection heal.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth.

Tuesday, March 7, 2006 3:10 PM CST

On Friday, February 24th, at 5:30 am we hopped into a black limosine and headed for the airport. We were met by a Make-A-Wish person, Chris, who helped us every step of the way. She was able to get a pass to take us through security and right to the gateway. We had an uneventful flight down and were met by a Give Kids The World person at the Orlando airport. Give Kids The World is a resort just for Wish kids. It's located in Kissimmee, Florida (right next to Orlando). I'll tell you more about it in another journal entry. Frank helped us get our luggage and our rental car (van), he gave us directions and we set out for Give Kids The World.

We had an absolutely wonderful time! Each theme park had it's own flavor and appealed to different senses. It was very informational to tour Kennedy Space Center and see all the launch pads. The kids thouroughly enjoyed a live show about our solar system (I personally thought it was corny but when asked their favorite things this show is always on the list). We saw other 3-D shows and live productions that left us singing, scared or wet! Shamu at Sea World was a huge hit with the kids. We HAD to sit in the "soak zone" and got thoroughly drenched by 52 degree salt water that Shamu blasted with his tail. Good thing Mom found rain ponchos in the gift store before hand or it would not have been a fun experience! Because just our face, hands and ponchos were dripping wet and not our entire bodies it was a hilarious experience and one that will never be forgotten. They also got to feed the dolphins.

Besides getting wet, we watched a 3-D interactive movie starring Flick the ant from "A Bug's Life". Nothing like being jabbed in the back, sprayed with water, smelling a stink bug, or having termites wiggling under your butt to get your adrenlin going. I was more than happy to leave! There was the Indiana Jones show and the Extreme Car Stunt show at MGM Studios, but my favorite by far was the Lion King Show at Animal Kingdom. We were sitting in the front row and some of the dancers were pulling kids from the audience to be a part of the show. One dancer came over to Lance to have him be in the show and he shook his head and said, "No, take my sister" as he pointed to Rachel. I was never so proud of him as I was at that moment. The dancer looked at him and said, "Are you sure, Buddy?" "Yeah, take her." So the dancer looked at Rachel and said, "You wanna come?" Rachel hopped off of Mark's lap and never looked back! She got into the dance and got to play an instrument and smiled the entire time. It was a very fun show to watch.

We rode tons of rides. Rollercoasters, tea cups, flying elephants and dinosaurs, safari rides and boats around the world, trains and space ships, go-karts and airboats. Yes, airboats. We took an airboat ride out into the Florida everglades and got to see alligators in the wild. It was very neat.

The kids got to see about a billion characters (tee hee) and got about a million autographs! Let's see, the autographs they got were: Micky Mouse, Minnie Mouse, Pluto, Goofy, Aurora (Sleeping Beauty), Cinderella, Snow White, Arial, Donald Duck, Pooh, Eeyore, Tigger, Alice in Wonderland, Mary Poppins, and Jojo (Goliath was with her but he can't write yet because he's just a baby lion). We also saw Belle, Jasmine, Chip & Dale, Lilo & Stitch, Timone & Pumba, Flick, Cinderella's Fairy Godmother, the King from Cinderella, and all of the Princes--Cinderella's Prince, Sleeping Beauty's Prince, Snow White's Prince, Belle's Prince (as the prince not the Beast), and Aladdin. The kids were thrilled!! To the younger two, they are still "real".

It was magical, it was fun, it was warm! Disney really knows how to make a wish come true! They treat these Make-A-Wish kids extra special and we didn't have to wait in any lines. Arial called Rachel "Princess Rachel" and that was almost too much for Rachel to understand. "Why did she call me that? She's the princess, not me. Why did she call me Princess Rachel?" Mark and I decided to play it up and told her that she was now obviously at the same level as Cinderella and Arial and all of the other princesses. I mean, if Arial just called you a princess ... Rachel looked at us strangely and thought about it for a bit. She shook her head, "I'm not a princess." "Do you want to be?" Quietly she said, "Yes." "Well, you must be one for Arial to call you that." Rachel's eyes lit up and she smiled and said, "Okay!" And then she giggled and wanted to know what ride we were going on. Too funny.

It was a very enjoyable trip. As Mark said as we were sitting on the porch of our villa in rocking chairs enjoying the afternoon warmth, "I could get used to this." Mmmmmmmmm ... yeah, me too. It was a terrific time and I took over 400 pictures! Good thing we've got a digital camera! Hopefully I can delete a few.

After the fun time on the airplane coming home, we were met at the gate by Chris from Make-A-Wish and we were taken home in a white limosine. We got home late Thursday night and hopped directly into bed. Ahhhhhhh ... our own beds!

Rachel remained "healthy" the entire trip. Not one phone call was made because of concern for her health. Although Rachel was well there, things have kinda changed since returning home. We went into the clinic on Friday to find out that Rachel has a fungus in her lungs. Rachel's oncologist is quite concerned about this because it can turn into a life threatening pnemonia. An IV antibiotic has been started but chemotherapy is being postponed until the fungus is clear. According to her oncologist, the key to getting over this is a high white count--therefore, no chemo.

Rachel had a chest x-ray on Friday that showed no changes in her lungs or that spot on her lower left lobe since the last one when she was in the hospital. They are hoping that the spot is fungus. Rachel had a PET scan done today and she will have a CT scan done tomorrow. If the spot isn't smaller, we will be talking about doing a biopsy of that area to determine what it is as they are assuming if it's fungus it should be smaller since she's on antibiotics and her white count is "up". This is the spot that's rumored to be new tumor. Of course, we're praying that it's smaller and that it's "just" fungus. Yeah, here we are praying for fungus. Geesh! The strange things that we've prayed for over the past 4 years!!!

Also, because of being on the diuretic, Rachel's potassium was low. VERY low. Dangerously low, I guess. They put her on an oral potassium supplement. Rachel would throw up after each dose she took. It was even horrid smelling. I decided to try it and I thought I'd just taken a straight shot of vodka or something horrid like that. It was the worst tasting stuff I'd ever had. It just burned all the way down and burned my tongue and the insides of my cheeks! YIKES!!!! No way was I going to make Rachel take it anymore. Then they opted for a potassium drip for FORTY-EIGHT hours!!!! UGH!!! Thank goodness that after less than that her potassium level came right up into the high normal range and we were able to stop it.

Today I found out that the potassium chloride they gave to her is supposed to be diluted in juice!!!! Hmmmmmm ... would be nice if they'd put that on the darn label!!!! No one told me that, either ... not even the home health care nurse that was AT OUR HOUSE when I tried the stuff. Oh, well ... she obviously didn't know, either. I tried it today in fruit juice after I'd been asked by a pharmacist if I'd diluted it and couldn't tell it was in there. Guess if it's needed again, we should be able to get it into her.

I should have preliminary results of the CT scan tomorrow but probably won't have any PET scan results until Thursday.

Specific Prayers:
~Thank the Lord for the wonderful time we had on Rachel's Make-A-Wish trip.
~Thank the Lord that Rachel felt well during her Make-A-Wish trip.
~Thank the Lord for our families safety during our trip.
~That the spot on Rachel's lung be from fungus.
~That the spot be smaller.
~That Rachel's lung fungus clear quickly.
~That the PET scan be clean.
~That Rachel not have any long-term side effects from radiation, surgery or chemotherapy.
~That Rachel be given the miracle of a cure on earth!

Friday, March 3, 2006 10:15 AM CST

And now .... the REST of the story (or should I say the FULL story, or the unamended one, or ....) TEE HEE!!!!!

When we arrived back at the hospital on that fateful Monday when Rachel was admitted, we were told, "We're going to admit her and get her better so you can get on that airplane on Friday and go see Mickey!" Hmmmmmmmmm ... is what Mommy and Daddy were wondering.

Yes, Rachel's Make-A-Wish trip was scheduled for take-off on the Friday of the week she was admitted to the hospital. Typical Rachel, isn't it??? On Tuesday, one of Rachel's nurse practitioners came into her hospital room and said, "The game plan is to put her on a diurectic and a steroid and we'll have you out of here on Thursday so you can hop on that airplane on Friday and go on your trip." She had been in on all of the conversations with the doctors and had been sent to do the "dirty work" of informing me. I looked at the nurse practitioner and said, "I know you guys too well. You won't get us out of here until supper time on Thursday and then you expect me to pack for five and be in a limo at 5:30 on Friday morning. You will leave me less than 10 hours to pack and sleep. It isn't happening. I'm not staying up until 2 or 3:00 in the morning running around like a chicken with her head cut off. Either she's well enough to go on that trip or she isn't. You will know tomorrow (Wednesday). You've got 24 hours." She laughed and said, "I told them 'Jodi isn't going to like this.'" We all laughed (Rachel's nurse was in there, too) and I said, "Well, either she's well enough to get on a plane or she isn't. I have no problem postponing this trip. I want her well. I don't want any problems with this trip and if it means putting it off then that's what it means. If she's going to be well enough to get on an airplane on Friday then she needs to be well enough on Wednesday to do so." The nurse practitioner nodded and said, "I'll go tell them."

Later that day, Rachel's primary oncologist walked into her hospital room. I told her about the earlier conversation and wanted her opinion on whether I was out of line or not. She shook her head and said, "NO! You're right. Either she's well enough or she's not. And you've got to pack!!" Yep, she gets it. We both laughed.

On Wednesday morning, the pulmonologist walked in shaking his head. "Annie (Rachel's oncologist) gave me some pretty tough conditions that I'm supposed to meet today to be able to cut you out of here. I don't know if I can do that. We've done all of the tests we can do, but I don't have all of the results back yet. How can I treat her if I don't know what I'm treating? I won't have results back until tomorrow (Thursday)." I looked at him and said, "If she's not well enough to go, then she's not well enough to go and we'll just put the trip off." He looked at me and said, "This isn't a case of sick versus well. She'll never be well. This is a case of how sick is she? Is she too sick to be discharged or not is the real question." That took my breath away a left me angry. So I said, "Well, I guess we're not leaving until Friday and if you put her on something now you still have tomorrow to change it and something tells me that there's pharmacy's in Florida." He looked at me and chuckled and said, "Yeah, I hear there are. Okay, I guess I could put her on Cipro and (he rattled off about 4 antibiotics) and those would cover just about any damn thing she could have. I just wish we could wait for the results to all come back." I started in about if they think she can go on this trip then I need to get home to pack and he held up his hand to stop me and said, "I've already heard about the packing logistics from every woman on this floor." "I'm going to tell them to you again." He started laughing and said, "Really, every female onocologist and nurse in this hem/onc department has told me about the packing dilemma. I know, I know, either she can go on this trip or she can't. I'm saying she can and I'm cutting you loose!" Thank God! He walked out of the room and I started putting together our very few belongings (remember, I had no suitcase with). Rachel's oncologist came in not too long after that with a big grin on her face and said, "We won!" I laughed. She quickly got things moving, got prescriptions written out and we were out of there faster than we've ever been discharged before.

When we got home at supper time on Wednesday, I packed the kids' suitcases and on Thursday I ran the errands that needed to be done before we left and packed the rest of the things. We all plopped into bed at a descent time on Thursday night and we piled into a limosine at 5:30 Friday morning with Rachel feeling GREAT!

We had an absolutely FANTASTIC time!!!! I don't think things could've gone much better. We did the Magic Kingdom, Disney's MGM Studios, Disney's Animal Kingdom, Sea World, Kennedy Space Center and did LOTS of swimming. We got to see LOTS of Disney characters and Rachel even got to be part of the Lion King show. Before take-off on our flight back, Rachel and the boys were taken to the cockpit and got to sit in the pilot's seats (yes, we have pictures) and Rachel got to talk over the loud speaker and had the entire plane in stitches. It was a glorious trip!

On Wednesday night we decided to go swimming (again!). Mark and the boys were just enough ahead of Rachel and I that when we got there they were already in the pool. While Rachel and I were walking to the pool I said, "Have you gotten to do everything you wished for, Rachel?" "Yes." "Have you had a good time?" "YEAH!!!!! And Mommy ... I didn't get sick this time!" I smiled and said, "Nope, you didn't get sick this time." With that she took off running to the pool yelling, "Daddy, Daddy, wait for me!" We don't have children, we have guppies.

I'll get into more details about our wonderful trip on the next entry. I'll also get a wonderful picture posted where Rachel's face tells the entire story! Right now, we have to take off for the clinic. Need to decide if Rachel is healthy enough to be sedated on Monday for all of that dental stuff she's supposed to have done.

Specific Prayers:
~Praise God for the incredible trip we had!!!
~Praise God that Rachel remained healthy the entire trip!
~Praise God for our family's safety.

Sunday, February 26, 2006 8:10 AM CST

Well, I had a whole page typed up and then lost it. So, in short (I've gotta get going!), Rachel is doing well. So well that she ate a HALF of a LARGE cheese pizza from Pizza Hut! You GO, !!!!

Rachel is supposed to have extensive dental work done where she needs to be sedated and it will be done in the surgery department at Children's Hospital on Monday, March 6th. We're not so sure that will be happening because of the sedation issues. On Friday, we'll go in and have x-rays done and the whole shabang to see if the oncologist will okay the procedure or not.

~Specific Prayers:
~That Rachel be healthy on her Make-A-Wish trip.
~That Rachel's upcoming scans show no new growth.
~For safety for our family during Rachel's Make-A-Wish trip.
~That Rachel's every dream come true during her Make-A-Wish trip.
~For discernment for Dr. Bendel for Rachel's treatment plan.
~That Rachel be given the miracle of a cure on earth.

Wednesday, February 22, 2006 10:02 PM CST

Rachel came out of the anesthesia for her bronchoscopy just fine! FEW!!! She was screaming at the top of her lungs for her Mommy so they brought me back into the recovery room almost as soon as she woke up. That's my girl! Letting them know what she wants and in a grand way.

The pulmonologist sat down next to me and handed me a bunch of pictures that he had taken with the scope. The first one was of her voice box which looked just fine and worked just fine as all of the doctors and nurses in the recovery area could attest to (tee hee!!!). Everything continued to look fine until he got the area where the lungs "Y" off to go either into the left or the right side. The left side looked totally normal (which they weren't expecting) and the right side was all slimey and full of mucus. As he continued to compare the two sides, the right side continued to be full of slime while the left side continued to be normal. He said that he thinks the slimey stuff is viral. Then there were a couple of places on the right side where her airtubes were actually "squashed", for lack of a better term. He's thinking that tumors, or scar tissue, or whatever it is that's left in her lungs is pushing against the airways and constricting them. He said we have no idea how long she's been this way--could be a year--and that although she's doing fine breathing and maintaining her oxygen levels with that condition, having the virus on top of that was just enough to put her over the edge and cause her to not be able to maintain her oxygen levels.

He also said that although there is fluid on her lungs, it isn't enough to aspirate by needle or chest tube. He also took samples of the mucus and in his words "sent it out to check for every pathnogen known to man".

It was decided to put her on a diuretic to see if her body could get rid of the fluid around her lungs with a little prompting and besides a whole host of antibiotics, was also started on a steroid to help with lung imflamation. She was also given both a red blood cell and platelet transfusion. Already by yesterday afternoon, she was doing well. The "normal" Rachel that we know was back and she was even riding the trike around the floor. Today they even unhooked her from her medicine tree and she was free to ride her trike and run around unhindered. That, of course, got us all wondering why she was even there. She even rode the trike down to have a chest x-ray done.

The pulmonologist decided that he could put her on several different antibiotics that cover most bacterial issues--as the sensitivities for the bacterial cultures aren't back yet--and send us home. If they feel they want to change the drugs, they can always call us. Why keep us in the hospital just for that?? GET ME HOME!!! Of course, I had my two cents in on that one, too!! They weren't doing anything for us there that I couldn't do at home ... except waking me every 1.5 hours because the stupid night nurse couldn't catch a beeping pump to save her soul!!! Very nice woman, just has never been able to stay on top of things. I haven't slept in three nights. I'm not exactly a happy camper.

As far as the new tumor rumor goes, it's possible that she still could have one but I'm not buying into it yet for several reasons. First, if she were going to have new growth, why in that spot and not the site of the original tumor and why ONLY that spot? Second, I know of too many people who have had un-normal scans when they've had a cold and then when the cold goes away their scans are once again normal. Too many people have been told they have new tumors and then get told, "OOPS, sorry, it was just a cold". I'm not going get excited about this "bad" scan because it's very evident that she's not only got a cold virus going on but she may even have a bacterial condition in there, too. They're going to have to prove it to me that this is a new tumor because I'm just not buying it yet. When I talked to Rachel's oncologist, I told her that I may have a delusional theory and told her it. She started laughing and said she had the same delusional theory. So, neither one of us is going for the new tumor rumor.

Rachel is to remain on these drugs for the next two weeks and we will rescan (CT scan) the beginning of the week after next and we will also do the PET scan at that time--it was cancelled for yesterday. Why do the PET scan when it just shows areas of inflammation as hot? It could light up her entire lung area. Don't need that. We're going to wait until she's completely over both the virus and the bacterial issues and then scan her. We'll get the pictures we need then.

We do know that the MRI showed everything being stable once again. Rachel's oncologist is talking about possibly doing a biopsy to see what we're dealing with. I don't know where she'd biopsy as she mentioned in the beginning that all of the tumors were very deep and in bad locations. That's something that we'll have to continue to discuss.

So, for now, we're home and waiting for everything to clear up before we take the next step. He oncologist did stop one of the drugs we were using for helping her chemotherapy as she found that long-term use of that drug can compromise the lungs. She also found that 100% of people who became lung compromised from using that drug totally recovered once stopping it. So, we're stopping it. I don't know if we'll try it again at a later date or not. We also don't know if that's the cluprit but she doesn't want to play around with it. We are delaying chemo for a couple of weeks until Rachel is over all of this, then we'll scan her and make a game plan. We'll just be in a holding pattern for now. At least the holding pattern can be done at home and not in a hospital room!

It's been an interesting last couple of days and now I'm off to sleep in MY OWN BED!!! Mark was a dear and had ALL of the laundry done when I got home! I am SO relieved!!! IT'S EVEN FOLDED!!!!!!!! WOO HOO!!!!!!

~Specific Prayers:
~That Rachel's virus and bacterial conditions clear quickly.
~That Rachel be healthy enough to take her upcoming Make-A-Wish trip.
~That Rachel's upcoming scans show no new growth.
~For safety for our family during Rachel's Make-A-Wish trip.
~That Rachel's every dream come true during her Make-A-Wish trip.
~For discernment for Dr. Bendel for Rachel's treatment plan.
~That Rachel be given the miracle of a cure on earth.

Tuesday, February 21, 2006 9:23 AM CST

I don't have a lot of time so I'm going to get to the point. Rachel's scans, although overall the same as last November, do show an area of worsening in her lungs. She had problems coming out of anesthesia for her scans and wasn't maintaining her oxygen level. Once we got home, she started running a fever of 103 degrees and we ended up coming back into the hospital. She once again wasn't maintaining her oxygen levels and we were admitted to the hospital.

Rachel is currently in surgery to do a bronchoscopy--stick a scope down into her lungs. They are hoping to see what is causing the problem in her lower left lobe. Whatever it is is causing fluid in her lung and that's why she's not maintaining her oxygen levels. We don't know at this point if it is new tumor, infection, or fungus. I'll tell ya, we just can't seem to keep on the easy road.

I literally just laid her on the surgery table and ran to the computer. I came here yesterday with no bags or anything. Why would they keep her for a fever when her counts are up? Yeah, well .... I should know better. So, here I am scrounging up toothbrush and paste, deoderant and finger combing my hair. Ugh. I don't know when I'll be able to update again. I'm hoping they find something that they can just give her medicine for and send us home yet today. We'll see.

Please pray. Pray that it's not new tumor growth. We will really be in trouble if is.

~Specific Prayers:
~Guidance for the pulmonologist and anesthesiologists.
~That Rachel have no breathing issues after the procedure.
~That they don't find new tumor.
~That Rachel be given the miracle of a cure on earth.
~That Rachel will be able to do her Make-A-Wish trip.

Monday, February 20, 2006 4:53 AM CST

The house is quiet as everyone except Mommy is sleeping. Mommy slept quite fitfully last night and either Daddy did, too, or Mommy's tossing and turning kept him awake--hopefully he's sleeping great now that Mommy is out of bed. Soon I will waken Rachel and we will make the journey to Children's so that we can see inside her body and what story it has to tell. We are cautiously optimistic. We so want these scans to be completely clear. We so want there to be difinitive answers. We so want everything to be so crystal clear as to what our next step is ... such as NO MORE CHEMO would be alright! It has been ten months since she started chemotherapy for the second time. We are ready for it to be done ... but not prematurely. It would be absolutely awesome to be finished with chemo in time for summer--or even Easter!

The first time Rachel did chemotherapy, she had 11 months worth of it. That was the protocal. This time, there is no protocal. This time we are making it up as we go. There is no standard second line of treatment for Ewing's Sarcoma. Generally speaking, you recurr ... you die. When we first went out to New York and met with the surgeon there, he told us that he could count on one hand how many people have survived a recurrence of Ewing's. Having been in the Ewing's world for as long as we have, we know that it's more than that ... but not a lot more. We continue to lose friends from the Ewing's support list that we're a part of on a too frequent basis. Some we've met in person, some we haven't. We know that the scientific odds are tremendously against Rachel. The fact that she's still here has the medical world shaking their heads in disbelief. Boy, do we like proving people wrong! Tee hee!! And because she's still here, we are running by the seat of our pants, so to speak, when it comes to treatments for her. What we're doing now for treatment is pretty novel ... and pretty amazing.

And, of course, we never discount God in any of this. God has given Rachel many miracles. When I see her I see miracles in action. Only He could do some of the unlikely things that have happened to her. Only He could lead us in the right direction. Only He can heal her. We believe He will.

Please continue to bombard heaven with prayers for clear scans for Rachel. Let's see another miracle!!!! Let's see remission and cure for this kid!! Let's see the end to the rat-race, the end to chemotherapy, the end to low counts and blood transfusions, the end of bacterial infections and IV antibiotics ... let's see the end to cancer in her body!!! Please continue to pray as she has these scans today and tomorrow. Thank you for helping us bring this issue to God.

Specific Prayers:
~That Rachel's scans be clear.
~That the next step in treatment be completely clear.
~That Rachel have received the miracle of a cure on earth.

Wednesday, February 15, 2006 8:34 AM CST

Rachel was well enough to go to school on Friday but we decided to keep her home one more day and when we heard there was strep in her classroom ... well, we didn't want to chance it. She had chemo on Friday and they drew blood cultures "just in case". All of the cultures came back negative and it's looking like she just has a cold.

This past weekend we were able to take the kids swimming. We were able to get a free hotel room (long story on how that came about) so we took a 24-hour trip to a near-by hotel and let the kids swim. They sure had a good time.

Mommy is looking forward to a bit of alone time this weekend to do some VERY deep cleaning! I've gotten through all three kids' rooms from top to bottom except for Lance's clothes. Hopefully that will get done within the next couple of days. This weekend I've requested alone time so that I can tackel our basement--the dungeon. I WANT IT CLEAN--and organized!!!! Mark has agreed to taking the kids to work on Friday and Saturday (they don't have school on Friday) so that I can hopefully get some uninterrupted time. I'm really looking forward to it.

Rachel's scans are on Monday and Tuesday (MRI & CT on Monday and PET on Tuesday). We probably won't have results for the MRI and CT until Tuesday because Rachel's doctor is out of the office on Monday. The results for the PET scan probably won't be in until Wednesday. We are expecting GREAT things!!!!! We are wanting clear-cut answers--nothing that leaves us guessing. Please step up your prayers at this time that Rachel's scans are clear and that the road we are to follow with treatment is resoundingly clear. Thank you!!

Specific Prayers:
~That our entire family remain healthy!
~For safety during travel on our Make-A-Wish trip.
~That Rachel's scans be completely clear.
~That there be nothing that causes questions on Rachel's scans.
~That whatever type of treatment Rachel needs be very clear from her scans.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be granted the miracle of a cure on earth.

Thursday, February 9, 2006 11:49 AM CST

Rachel's nurse surprisingly told me to keep her at home and watch her throughout the day on Wednesday. Her temperature fluctuated up and down up and down. I guess she's figuring that if it isn't a high fever it isn't a bacterial thing. Rachel is home again today with a low grade temperature. Tomorrow is chemo again and I'm going to have them draw blood cultures on her "just because". We don't need any surprises! Rachel's teacher said I should just keep her home for the rest of the week because there's SO much "crud" going around at school that she'll probably just end up sicker!!! Too funny. I'm thinking it may be good advice, though!! :-)

Rachel's loving being home with Mom but I'm not exactly accomplishing a lot except playing multiple games of Pooh Candy Land. Ugh. Do taxes and laundry mean anything to anyone?? Not to Rachel they don't!! Tee hee!! "MOMMY!!! Play a game with me!!!" Yeah. She's doing much better today and probably will be able to go to school tomorrow ... we'll see.

Specific Prayers:
~That Rachel's temperature be normal.
~That Rachel not have another bacterial infection.
~That Rachel's upcoming scans are clear.
~For safety during travel and while on our Make-A-Wish trip.
~That Rachel have an absolute blast on her Make-A-Wish trip.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure here on earth!!!

Wednesday, February 8, 2006 7:11 AM CST

Rachel's blood cultures from Sunday were negative! We went in yesterday for chemotherapy and left there knowing that the antibiotics she's on will run through Friday night. Possibly only three more days of less sleep than normal. I say "possibly" because last night Rachel started running another fever. A call was made to the doctor because Rachel reached 101.5 degrees. Because Rachel's counts are up (WBC 2,600; ANC 1,365; Hgb 10.7; Plt 46,000) we decided to not rush into the ER last night. But because of that decision, I had to wake her several times last night to make sure she was still okay. Even though she's on a very strong antibiotic, it doesn't cover everything--like some of the really nasty, scary bacteria that these kids can get. So, I either had to go to ER last night--and sit there for God knows how long and drive back home in the middle of the night just to get only a couple of hours of sleep or I could wake her twice during the night to be sure she was doing okay and if so, evaluate her this morning or if not, take her to ER. We made it to this morning but she is once again running a fever of 101.0 degrees (it went down to 99.5 during the night). I'll be calling Rachel's nurse this morning once the clinic opens up and I'm 98% sure that we'll be taking a trip up to the hospital to get some blood cultures drawn and to give her a dose of another type of antibiotic that covers that really icky stuff. Then, if the cultures grow out positive, I'm sure another antibiotic will be added to the mix. Poor kid.

Monday night, Lance was reading a book to me as part of his homework. It was about a pig that wanted rain for his mud puddle. He came to the word puddle and worked on sounding it out. He was going, "puh, puh, puh" (the "p" sound) and then said, "platelets?" I busted out laughing. "No, not platelets." "Well, platelets is a word, Mom." "Yes, I know it is." Not a word that a seven year old should just come up with was what I wanted to add! Can you believe it? Too funny! Wait until his teacher hears about this one!!

I'll keep you posted as to what happens with Rachel!

Specific Prayers:
~That Rachel's fever subside and that she doesn't have another bacterial infection.
~That Rachel's blood cultures are negative.
~That Rachel's upcoming scans are clear.
~For safety during travel and while on our Make-A-Wish trip.
~That Rachel have an absolute blast on her Make-A-Wish trip.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure here on earth!!!

Sunday, February 5, 2006 9:43 PM CST

Blake officially turned 12 yesterday. Wow, where does the time go?? I remember being very happy that he wasn't born on Super Bowl weekend--which then was the last Sunday in January. Why is the Super Bowl now in February???? August through January just isn't enough? Now we need February, too???? The birthday parties this weekend HAD to be planned around a certain football game, you know. Oh, well. Guess there's worse things in life, aren't there??!!?

Blake and my dad are having fun reminding me how many years it is until he drives. Blake also likes to add in about hunting, going to college and making me a grandma. I won't mind being a grandma as long as he has a college education, is married, and doesn't live in my house!!! Tee hee!!! I figure that should be AT LEAST another 15 years.

A home healthcare nurse came out this afternoon to draw blood cultures on Rachel. Hopefully we'll hear that they're negative!! Rachel starts chemo again on Tuesday. Only two more weeks until Rachel's scans. We're getting anxious to see what they have to say. We're REALLY hoping that some major decisions will get to be made about chemotherapy because of those scans.

Rachel continues to feel well and her hair is growing like someone applied Miracle Grow to it! This morning I had to wet it down because it was standing up. Rachel laughed and laughed. "It's getting long, Mom!" Well, if you call 1/2 an inch long ... you BET it is!!! That's a half inch she didn't have a few months ago! We'll take every 1/8 inch there is. I see all of these girls in her kindergarten class with their really long hair and I just want Rachel to be able to have that. Problem is, it will take a couple of years of NO chemo for that to happen.

We pray that the long road the Lord said it would be is coming to an end. We're going on four years of this cancer world and I know we're all tired of it. Rachel has come SO far in the past year. The idea that she was only hours away from death just last April is still a thought that leaves me shaking my head. I can't even fathom the thought of having let her die. I replay one nurse practitioners words in my head and just have to shake them away. I'm glad we didn't listen ... We listen to a higher power. I'm so glad we do. One that is all-knowing. One that is all powerful. One that doles out miracles. Watching Rachel is like watching God in action. It's powerful because there just isn't any other explanation for it. We thank each of you for your prayers and for bombarding heaven with requests for Rachel's healing. Those prayers are our artillery against the cancer, against the frustration, against the demons that beg us to give up. Thank you for praying when we couldn't even conjur up a single word to put into a sentence to start a prayer because our minds were too mumble-jumble. Thank you for praying when things were moving so fast the we didn't have time to pray. Thank you for praying when things weren't looking good and thank you for praying as things continue to look on the bright side. Thank you for continueing to pray us through this trial. And the prayers must continue. Although she's doing well, we're not there yet. No, we're not there yet.

Specific Prayers:
~That Rachel's blood cultures are negative.
~For safety as we travel on Rachel's Make-A-Wish trip.
~That Rachel's trip is everything that she's hoping it will be ... and more.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

Wednesday, February 1, 2006 4:05 PM CST

Yesterday morning started out with Rachel having a bad headache and feeling cold. Her temperature was about 99.5, which is nothing to get excited about but I chose to keep her home from school. Tylenol went down the hatch and she felt pretty good all morning--well enough to beat me in several games of Disney Spinning Princess (don't ask) and Trouble! By early afternoon it was obvious that things were not going in the right direction. She was complaining of being cold and just wanted me to hold her. I took her temperature and she was 101.6--DRAT!!! We'd passed that "magic" number of 101.5 and needed to make that phone call to the hospital. Being that a home-healthcare nurse was expected that afternoon, the doctor decided to just have the nurse draw more labs and look her over. Of course, if things worsened I was to call back. Thirty minutes later I was on the phone because Rachel's fever was now 104.1--I don't neccessarily like those kind of numbers! Of course, we had to go in. Rachel was screaming because her head hurt so bad from a headache (she always gets bad headaches when she has a high temperature) and she was vomiting because of the pain in her head. What a vicious circle! More tylenol was given.

Although I assumed Rachel's counts were high enough that they wouldn't admit her to the hospital, I still threw in the suitcase just in case. By the time we got there, the tylenol had kicked in and she was feeling better and her temperature was down. They drew blood cultures to check for bacterial infections and did counts on her. They also gave her a dose of antibiotics just in case it was a bacterial infection. When one has low counts, they are afraid of the person becoming septic therefore they want to treat with antibiotics right away. Rachel's platelets were low enough to have a transfusion, which I was surprised by because they'd been 66,000 on Friday. The doctor said that when you're sick you eat through your platelets. Interesting. So, Rachel got more platelets last night and we got home in time to go to bed.

Although Rachel is feeing just fine today, I kept her home from school. The home healthcare nurse came out and brought out several days of IV antibiotics because Rachel's cultures came back positive for TWO different types of bacteria. What a drag. So now she's back on medicine every 8 hours. I REALLY hate that schedule! Plug her in at 10:00 at night, it finishes at 11:00 just to do it again at 6:00 in the morning. I really like getting more than six hours of sleep a night for two weeks straight. Oh, well ... what do ya do???

Rachel is currently running around the house (literally) with her brothers and I hear monkey noises. I don't even want to know! Just once I'd like to pretend I'm NOT the parent and totally ignore everything that sounds like maybe an adult should check into it!!! I know, I know, enjoy each and every age your child is at. Do you think the person who first said that even had kids??????

The monkey noises have stopped and they actually sound like they're getting along. Hmmmmmmmmmmmmmmmmmm .... trouble in the making???? NOW's the time for an adult to check in on them .....

Specific Prayers:
~That Rachel's bacterial infections go away.
~That Rachel's scans be clear.
~For safe travel on Rachel's Make-A-Wish trip and that it be everything Rachel is hoping for--and more!
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth!!!

Monday, January 30, 2006 8:39 PM CST

Rachel needed a platelet transfusion last Tuesday and a red blood cell transfusion on Friday. Made for some long days at the hospital (didn't get home until 9:00 pm) but what do you do? A home healthcare nurse is coming out tomorrow afternoon to check counts. Hopefully she won't have to go back in this week for any transfusions. It is Rachel's off-week from chemo so it would be nice to completely stay away from the hospital.

Mark and I realized the other night that Rachel's leg pains seemed to coincide with when we weren't being as diligent with her IV vitamins because she was throwing such hissy-fits with being hooked up so much. I mentioned it to the osteopath when we were there last week and he said that the vitamins that are in her cocktail do help with growing pains and muscle aches. Hmmmmmmmmmmmmmm .... We decided that she needed to be hooked up again EVERYDAY (hissy-fits or not) to see if the vitamins could really be making that much of a difference in what could be growing pains or side effects from chemotherapy. It's been kinda of interesting as we haven't skipped any days of vitamins since last Wednesday and Rachel hasn't complained about her legs or heels since Friday. What does that tell you??? It tells us that vitamins, minerals and antioxidants DO make a HUGE difference in side effects from chemotherapy ... don't let anyone tell you otherwise!!! We don't think it's exactly coincidental that the pains began when she was on them sporadically and they have stopped now that she's consistantly on them. We will try to move to oral vitamins and see if that makes any difference--hopefully they will work just as the IV ones are and she won't feel hindered because of being hooked to a pump for 2 1/2 hours a day.

Rachel's scans are now three weeks away (Feb. 20 & 21) and her dental work has been scheduled for the first week in March. She will be sedated two of the three scans (the two being done on Feb. 20) and then again for the dental stuff.

Once again, thank you for your continued prayers for Rachel.

Specific Prayers:
~That the oral vitamins work as well as the IV ones for Rachel's pain.
~That Rachel's scans be clear of any cancer.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth.

Tuesday, January 24, 2006 8:33 AM CST

Thank you to all of you who have emailed me with nutritional products for Rachel. I am diligently plugging all of the different products contents into a spreadsheet and comparing each one with each other. Hopefully a conclusion will be made soon.

We went to Rachel's orthopedist yesterday and got some really good news!!! :-) Rachel's leg length difference is only 5 millimeters (that's a half a centimeter)!!!! WOO HOO!!!! We're thrilled!!!! Since she was last in, she's grown over a centimeter and her right leg has kept up. The scans do show that she has a slightly smaller right bone structure than the left but the orthopedist just shrugged at it and said it won't hinder her in any way. It sure isn't noticeable from looking at her. Actually, the right side is growing, just not quite as fast as her left side. We're thrilled that it's growing!!!

This was the main reason that we went to New York for radiation treatment. The type of radiation that the different facilities we talked to here in Minnesota wanted to do would have left her with a two-year-old leg/pelvis. It would've totally stopped her growth on that side. The specialized radiation we did in New York has allowed Rachel's body to continue to grow--although a bit slower, it's still growing! This has saved her from the amputation that would've been inevitable had the other type of radiation been used. Thank you, God, for leading us to New York and for getting the fifth, sixth and eighth opinions. We don't even want to think about where we would be today if God hadn't led us there.

I'll never forget the drive home from the Mayo Clinic in Rochester when Mark and I had just had the most horrific experience of our lives. Mark angrily said, "WHERE was God in this?" With tears in my eyes from total frustration from the day I answered, "Oh, He was there. It's just not where we're supposed to be. He's closed this door--no, He SLAMMED this door--but another will open." And He did. In less than a week from that day, Rachel was starting treatment in New York. Things can move quite fast in the cancer world.

I talked to the doctor in New York on a Thursday, we went to the Mayo Clinic on Friday, I overnighted more information to the New York doctor on Saturday and on Monday evening he called me wanting to know if we could be in his office on Wednesday morning at 9:00 AM. Well, OF COURSE we can be! I put down the phone, walked outside where both my mother and Mark were standing and said, "We're going to New York. Tomorrow." They both just looked at me. Then my mother said, "I KNEW it! I'll take the boys!" And so she did. The craziness began to find airline tickets and pack for what could be a 3-day journey or a three-month journey. Looking back, I don't know how I did it, but I did. I know I spent over two hours on the phone looking for the least expensive way I could find to get to New York. Everyone wanted around $1300 a ticket for a last minute reservation. EEGADS!!! Thankfully, I found a way around that but it took a lot of time!

None of it matters now! The fact that Rachel's leg/pelvis is growing makes every minute that we were away from home absolutely worth it. Not that we ever doubted it, but it's nice to have confirmation of it!!

The orthopedist did say that there is a growth plate at the back of your heel (who knew?) and that he thinks it's inflamed and causing Rachel some of her foot/heel pain. He said that it could be inflamed from growing or from increased activity--we're thinking a little of both. Since the change in chemo treatment she's feeling better therefore she's more active and she's also been growing. We're not discounting that it could still also be from the medications she's taking but the orthopedist is thinking that it's probably a combination of things. He gave her some heel inserts for her shoes--really soft, cushy, padded inserts that he thought would just make the heel feel better because they're soft. She wants nothing to do with them. She just cried and cried and cried. I guess it's another thing that makes her "different". We'll work with it. If she doesn't wear them, guess it's not the end of the world. They were just to make her more comfortable while her growth plate is inflamed.

Today Rachel has chemo again, and by looking at her both Mark and I are willing to bet that she's going to need both a red blood cell and a platelet transfusion. This means that it is going to be a long day. Ugh. Oh, well, what do ya do?

Rachel's scans are set for Feb. 20 & 21--four weeks from now. She'll have both a MRI/CT scan and a PET scan. We're praying for GREAT things!!!!

Specific Prayers:
~That Rachel's leg pain cease.
~That Rachel will wear her shoe inserts.
~That Rachel upcoming scans be clear.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel be given the miracle of a cure on earth.

Saturday, January 21, 2006 8:20 AM CST

It's been a week of sick kids, I guess. Yesterday Rachel went to school but Lance stayed home. He was all stuffed up and had a sore throat. By evening, he felt better. Then, after supper last night, Rachel was running a temperature of 103 degrees. A call went into her oncologist who had luckily just seen her for chemotherapy. Being that Rachel's counts are high right now, and the fact that she's been dealing with something this week, her oncologist thinks she just has the crud and we didn't have to make another trip into the hospital--unless things deteriorate, of course. I was up with her in the middle of the night and now she's just laying on the chair watching tv. She's allowed to.

I am back to the researching. Since we've changed Rachel's chemotherapy treatment, she is feeling better. That means she wants to be playing outside, playing with friends, and doing "normal" five-year-old things. She no longer is tolerating being hooked up to her vitamin/mineral cocktail for 2 1/2 hours a day. I'm having a really hard time saying that she can quit the IV vitamins and go back to the shakes because I know that those shakes taste horrid. So, I'm on a mission and I'm asking for your help. Those of you who either have information on a nutritional product, are part of a networking company that has a nutritional product, or if you know someone who is PLEASE READ THE FOLLOWING IN ITS ENTIRETY AND VERY CAREFULLY!!!!!!!

I have strict criteria for the product that I want to use. I already have a product that "fits the bill", so to speak, but I'm looking for something that will be similar in nutritional value but possibly easier on the pocketbook. I DO NOT want to be swarmed with information that I don't need. If the product you are thinking of fits into my guidelines, please follow my directions carefully. If your product doesn't fit my criteria, please be respectful and don't waste my time by sending me the information as everything is going to be compared to the product that I'm already looking at.

Here's the criteria:
1. I am NOT looking for a meal replacement. If it has more than 100 calories per serving I'm not interested UNLESS it has 100DA's of the vitamins and minerals. I AM looking for a vitamin/mineral supplement. If it contains complimentary nutritional items (also known as alternative medicine) that is great as long as it has vitamins and minerals, too. I am looking for high values of these items.
2. It must be in a powder or liquid form.
3. It must be low in sugar--ALL forms of it.
4. It must taste good or be able to taste good with the addition of fruit.

I am aware that most of these items are created for adults ... that's okay. I know how to reduce the amount for Rachel's size--I also know the levels of vitamins/minerals that she needs. IF your product fits into all of the above criteria, please contact me in the following way:

1. E-MAIL me ... NO phone calls, or envelopes in the mail!!
2. In your e-mail please include the following:
--the product name
--the entire nutritional value of the product (do not just send me to the website as I need to quickly process all of the information I am going to receive and I ask that you please save me as much time as possible!)
--the web address to the company's site
--how I can contact you (one of the ways MUST be email)

I hope to make a decision by mid-next week. Those of you whose products were not chosen will get a blanket email telling you that I have made a decision. I sincerely ask that you do not continue to contact me about your product or company.

I know that this seems curt and to the point, but this is the best way that I know how to handle what could be a potential information overload. There are many good products out there and we need to get what we feel will be the best one for what we're looking for.

Thank you to all of you who send information. The email address to send the nutritional information to is: FlyingCook@aol.com

Since writing this, Lance told me he needed medicine and then proceeded to lay on the kitchen floor and cry. I asked him why he was crying and he told me he didn't know. Poor guy. He just doesn't feel good. He did end up having a bout of diarrhea (he was screaming while sitting on the toilet because his abdomen hurt so bad) and then cuddled up with Mommy on the couch ... nothing like good cuddle time to make you feel better. Heck, nothing like good cuddle time to put Mommy right off to sleep!! Tee hee!!! Oh, well. A little nap on a Saturday afternoon can't hurt anyone, right?

We meet with Rachel's orthopedist on Monday to discuss leg pain and leg growth differences.

Specific Prayers:
~That the bug that Lance & Rachel have quickly pass from them.
~That no one else in the family get sick.
~That Rachel's leg pain be from chemotherapy.
~That Rachel's leg pain cease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth.

Thursday, January 19, 2006 6:44 AM CST

Well, the one inch leg discrepancy has turned into a one CENTIMETER descrepancy. We'll take it!! It's still up from last July, but it sure is better news than one inch. We're going to go see the orthopedist on Monday and he'll do all of his calculations and then we'll get an EXACT measurement. Although we thoroughly trust Children's, knowing that the x-ray technicians at the orthopedist do the positioning needed for accurate calculations everyday, I'd like to have them do it just to make sure that the centimeter is correct.

Rachel was up Tuesday night at 2 AM with diarrhea. She was also complaining that her tummy hurt. She stayed home from school yesterday and seemed just fine. Then, last night she started running a temperature and she was complaining about being cold. Her temperature is up around 101.2--just a few tenths away from having to make that dreaded phone call into the clinic. Thank goodness it just sat there all evening. If that phone call does have to be made, I doubt that she'll be admitted to the hospital because her counts are up. Her white count was over 1,000 and her ANC was over 900 on Tuesday. They would probably want to see her and just start her on some antibiotics. It would mean ANOTHER trip to the hospital--we've already been there twice this week and have to go again tomorrow for chemo. We'll do whatever we have to do. Of course, she'll be home from school again today--she has yet to be there this week because Monday was a holiday, Tuesday she had a scan and now she's sick. I guess the intestinal crud has been going around with some vomiting, diarrhea, and low-grade fever. Hope no one else gets it. Both boys have stuffy noses and Lance even woke me up early this morning to give him medicine for it--we don't need any more than what they've already got. It 'tis the season, huh? :-P

Specific Prayers:
~Thank God that the leg length discrepancy is one centimeter!
~That the leg length turn out to actually be less than one centimeter when Rachel goes to the orthopedist.
~That Rachel's leg pain cease immediately.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel's Make-A-Wish trip be everything she's dreaming it to be.
~That Rachel receive the miracle of a cure on earth!

Tuesday, January 17, 2006 10:52 PM CST

On Friday, we did another x-ray of Rachel. This time it was of both legs from her pelvis on down. They were checking for leg length to see if one leg is considerably longer than the other and if that could be a reason for the leg/heel pain. Rachel's nurse called and told me that the leg difference was an inch but that's still within the normal range. I thought, "WHOA!!" because when we were at Rachel's orthopedist last summer, the leg length difference was only 4 millimeters. Follow me here for those of you who don't know metric. Four millimeters is equal to .4 (4/10 or 2/5) centimeters or approximately 3/16 of an inch. One inch is approximately 2 1/2 centimeters or 25 millimeters. That to me seemed like an awfully big jump in that amount of time and I was actually pretty bummed because that means that we're going to be dealing with leg lengthening issues which means lifts, braces and surgery.

Today, Rachel had a bone scan. I was pretty certain that her foot and leg would show nothing on the scan. I was right. What I wasn't prepared to hear was that the spots that showed hot on her last bone scan--a spot on her femur, a spot on her pelvis, and a spot on her spine--were not only NOT hot but the areas appeared "almost normal". I'm not exactly sure what the "almost" means, but anything with the word NORMAL in it HAS to be good, right?!?!?!?!? We're VERY happy with the results! I have yet to read the report myself as it's not typed yet, but those were the words the radiologist told Rachel's doctor.

While looking at the scan on the computer with Rachel's oncologist, she mentioned the 1/2 centimeter difference in Rachel's legs. WHAT??? I reminded her that it was an inch. She looked at me strangely and said that's not what she remembers. She called Rachel's nurse over to where we were and she asked her what the difference was. Rachel's nurse responded that it was one inch. The oncologist shook her head and said that she remembered it being not much--like a half centimeter--and tried to pull up the report from the x-ray. The nurse said that that's the way she understood the oncologist in her message. Of course, they couldn't get the report to pull up so we're waiting to find out if either the oncologist just isn't remembering correctly or if the nurse misunderstood her. We're REALLY hoping it's just a communication error!!!! We'll take the 1/2 centimeter!

I had made an appointment with Rachel's orthopedist when I heard that the leg length difference was an inch. Neither Mark or I feel that an inch difference should be in the "normal" range. We see all sorts of issues happening with that (back problems, knee problems, etc.). We feel that at that range she should have some sort of lift in her shoe--especially if it's the cause of her pain. No matter what, we're still going to go see him next week and see if he can get to the bottom of the pain--whether length difference related or not. We did get another insight today, though. Rachel's oncologist talked with the pharmicist who found out that the three meds Rachel is taking for this chemotherapy treatment can all cause pain. Although MOST people don't experience pain, it can happen. And we all know, that if it's small odds, it will be Rachel!!!

I questioned that if the pain is medicine induced "why only the right leg"? Rachel's oncologist answered with, "She's had radiation to the right leg, she's had surgery to the right leg, she's had work done on her siatic nerve to her right leg. All of those nerves are frazzled and more sensitive. It makes sense that they would be more sensitized to something that could cause pain and have it show up in that leg." Makes sense to me. We're really holding out for the pain reason being from the medicine because that means when the medicine stops, so does the pain. We actually even went up on the medicine levels several weeks ago so maybe it's the result of that. We will do some blood tests in two weeks (it has to be timed with when the levels of one certain drug would be the highest in her system) to see if we can back off of it any. It means we continue to live on Tylenol and Tylenol with codeine when necessary. Guess there's worse things then that.

So, besides the leg pain issue, things continue to go great! We're looking at having an MRI and a PET scan done in about four weeks. We're quite excited about what we will find! We continue to think back to last April and how very far she has come. We thank God all of the time for the miracles He has performed in Rachel. Some of the doctors call her Miracle Girl ... they're right. Rachel feels so much better, she looks great, the blood and platelet transfusions have been less (but we're still using up the donated blood before it expires--THANK YOU! THANK YOU!! THANK YOU!!! to those who have so generously donated) and her hair is growing back. She loves to show off the fact that she again has eyelashes. Her looks have defineately changed now that she has eyebrows and a coating of soft downy hair!

We thank you for your continued prayers for Rachel. She may be doing well now, but we can't let up! We must pray her through to cure!! And beyond ....

Specific Prayers:
~Thank the Lord for the wonderful results of the bone scan.
~That we be able to specifically find the reason for Rachel's leg pain.
~That Rachel continue to grow (35 pounds now!!!!!)
~That Rachel's upcoming scans be clear.
~That Rachel's leg length difference be 1/2 centimeter.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be able to stop chemotherapy soon because there is no more cancer in her body.
~That Rachel be considered cancer-free in February 2006!!

Thursday, January 12, 2006 8:20 AM CST

We passed the year anniversary of Mark's Dad's death. Wow, can't believe it's been a year. We miss him terribly and things sure are different without him around. As always, in grief is also celebration and today we celebrate my Grandma's nintieth birthday (my Dad's Mom)!! You GO, Grandma!! :-) We all love you very much!! My Dad and his siblings are taking her out and also having a little party at the apartment complex she lives in. I'm sure it will be a fun day.

Rachel's counts came back with a nice white count and ANC but her hemoglobin and platelets are low. So, today after school, we get to make the treck up to the hospital to tank her back up. I'm sure we'll be there ALL afternoon--lucky to be home by supper kinda thing. It takes two hours for a red blood cell transfusion and 30 to 60 minutes for a platelet transfusion (depending on the doctor ordering it) and then you have flush times for all of those (the time it takes to flush the tubing clean of all of the blood product--you don't want to waste any!), wait times for the blood, etc., etc. It can turn into quite the waiting game sometimes. Because Rachel has had reactions to blood products, she know gets premedicated with Benadryl which always makes her sleep. So, I see major nap time today!! WOO HOO!!! Tee hee!! I better bring something along to do. If she doesn't fall asleep, I'll be playing board games all afternoon. You know, I love games, but we play them EVERY time we're there!! Sometimes I just don't want to play!! Oh, well ... the price of being a Mommy.

The bone scan is still on for next Tuesday and Rachel is still limping and complaining of pain.

Specific Prayers:
~That Rachel's pain cease and that it just be from growing pains.
~That the bone scan be clear.
~That Rachel's upcoming scans in February be completely clear.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel have received the miracle of a cure on earth in 2005!

Tuesday, January 10, 2006 9:18 AM CST

The bone scan is set for next Tuesday. Because she has to be sedated for it, it can be tough to schedule on short notice. We could've gotten it in on Thursday if I didn't care that she couldn't eat all day and have the scan at 4:00 in the afternoon ... uh, NO!!! Being that I'm not thinking it's cancer, we can wait a few more days for the scan to be sure that we get the first slot of the day! Although, she has started to limp and is walking on her toes on that foot--oh, her physical therapist it going to LOVE that!! (Not!)

Rachel decided to be with her Daddy yesterday (Mark has Monday's off during the winter) and not come with me to the hairdresser's. I couldn't believe it! She turned down getting pink hair to stay with Daddy! Geesh!!! He must rate, or something! So ... we've still got "normal" color hair growing out. Her whole looks have changed.

Okay, okay, okay ... I've gotten so many emails and now even in the guestbook from people who want to see the wall hanging I made my grandmother. I'll get a picture posted!

A home healthcare nurse will be coming out today to check Rachel's counts. Hopefully she'll be doing fine and not need any transfusions.

Specific Prayers:
~That Rachel's leg pain be from growing.
~That Rachel's leg pain cease.
~That Rachel continue to handle the chemotherapy well.
~That Rachel's counts are high.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That it be proven in 2006 that Rachel was cured from cancer in 2005.

Monday, January 9, 2006 6:59 AM CST

Rachel's x-ray of her leg and heel came back normal. We are waiting to hear when her bone scan will be. She continues to have pain issues with that leg. Yet, by just looking at her I can tell that she's growing both in height and in bulk. It's great to see!!! Her little thighs are actually filling out! No more bird legs. I think it's all issues with growing. That leg has been a bit behind so maybe it's doing all it can to catch up! :-)

She's continuing to do well with the chemotherapy. This is her off-week, so a home healthcare nurse will be stopping by tomorrow to take counts so that we don't have to run into the clinic. That's nice! If she needs blood or platelets, we'll obviously have to go in but if not, it saves us a trip. We're all about that! We're there enough!

For those of you who don't know about Lance's funky front tooth, I'll quickly fill you in. His two permanent front teeth are coming in. He lost one baby tooth but the other one hasn't come out--even though it was loose. The permanent teeth have pushed it to the very middle of those two teeth and upward so it looks like it's coming straight out of his gum at a right angle. Very strange looking. And it's not as loose anymore! The dentist looked at it and wasn't concerned. She just said that if he didn't have it out in a few weeks that she'd have to pull it. Of course, Mark and I are worried about what it's doing to his permanent teeth--like not letting them come in straight because it's been like this for at least a month already. He finally got it out last night! Thank God! We told him if he got it out that we'd take him out to eat to a restaurant of his choice. He decided to hook his tooth up to his remote control snowmobile that he got for Christmas--eegads! is all Mom can say. So, he and Daddy got it all rigged up and after some coaching and lots of support, he blasted his snowmobile forward and POP! out came that tooth! YEAH!!!! I'll tell ya, our two boys have defineately come up with some inventive ways to take their teeth out! Is that a boy thing??? My Dad threatened to tie string to a door to "help" but I never let him. The boys have been all over "strange" ideas that either they or their Dad come up with! Funny thing is ... they work! :-) But the best thing about it is ... Mom didn't have to cook! Tee hee!!!

I think there's a rumor that Rachel is going to get pink hair today! Watch for a change in the picture!

Specific Prayers:
~Thank the Lord that Rachel continues to do so well with this chemotherapy.
~That Rachel continue to do well with the chemotherapy.
~That Rachel not need any more transfusions this round.
~That Rachel's leg pain be just from growing.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That it be proven in 2006 that Rachel was cured from cancer in 2005.

Thursday, January 5, 2006 11:14 AM CST

The Make-A-Wish trip is really going to happen! We have dates, flight numbers and the whole sha-bang! The kids are SOOOOO excited!!! Rachel announced, "I'm not going to get sick, either!" That's what we're praying for, Sweet Pea!!

Rachel's chemo has continued to go well. She did have to have a platelet transfusion on Tuesday but her hemoglobin is almost normal! WOO HOO!!!! She is having a lot of leg pain in her right leg--the one that she had surgery on to remove the primary tumor in 2003 and the one that was radiated. We've been assuming that it's been growing pains (she continues to grow taller!) because they tend to happen in the evenings which is when growing pains generally occur. Tuesday night they were EXTREMELY painful and she cried and cried and didn't get to sleep unti 11:00. We're thinking it was from physical therapy that day but the question has been posed to her oncologist about doing a bone scan. Her last CT/MRI and PET scan came back clear of anything in that area, but a bone scan wasn't done and that can tell you about things in the bone. So, we'll see what the doctor thinks. I'm hanging onto the growing pain/physical therapy theory myself. She's been fine yesterday and today and no pain last night, so being that it's not a constant pain I think that's what it is.

Speaking of physical therapy, Rachel's therapist has decided that she needs PT once a week again. Not because she's regressed any, but because her therapist has decided that she's going to get very picky. She said that she's no longer happy with the way that Rachel is compensating when she knows that she can do it the "correct" way. Her therapist is also pregnant and she wants to see Rachel be done with physical therapy before she goes on leave ... "I'm being selfish and I don't want anyone else to have Rachel!" she said. We all laughed. I don't think Rachel would work with anyone but Lynn anyway! So, we're going to push the PT for the next several months and see if we can't just get to where we want her to be. This means doing work at home, too. Fun, fun. Rachel never responds to Mom like she does to Lynn. Typical.

We're back in for chemotherapy again tomorrow. I just got word that Rachel's oncologist wants an x-ray of her leg tomorrow and a bone scan next week. All of her other scans are being scheduled for mid-February.

We had a nice New Year's Eve, too. At midnight we had "Apple Sprinklers"--that's Lance's version of Apple Sparklers (you know, sparkling apple juice). It was really funny when he was talking about his apple sprinkler!! I started laughing and he's looking at me wondering what my problem was. I said, "You mean apple sparkler?" "Oh, yeah," he laughed. "What do I think it's doing, raining apples?" We also went outside and lit fireworks. The kids really thought that was GREAT!

We're praying for a MUCH better year in 2006!

Specific Prayers:
~That Rachel continue to handle this chemotherapy treatment well.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel's Make-A-Wish trip be filled with fun and excitement and clear of any medical issues.
~That Rachel's next scans be clear.
~That it be proven in 2006 that Rachel did receive the miracle of a cure in 2005!!

Friday, December 30, 2005 7:16 AM CST

Rachel's chemotherapy on Tuesday was uneventful. We did find out that the scale has moved ... upward!!!! YIPPEE!!! Rachel weighed in at 33 pounds 5 ounces. Happy Dance, Happy Dance!!! She's actually back to where she was a year ago. How sad is that??? And she's taller now, too, so she should actually weigh more. Oh, we'll just keep working at it.

We're back in for more chemo today. Of course, it snowed last night and we're supposed to get more today so the driving could be interesting.

Being that the new year is just around the corner and we're happily taking Rachel with us (insert BIG grin here!) I thought I'd leave you with some things we believe in. A friend of mine sent me an email with some of these things on there ... I took the liberty of switching, changing, adding, etc., so that they'd be "ours".

We believe--
that you should always leave loved ones with loving words. It may be the last time you see them.

We believe--
that you can keep going long after you can't.

We believe--
that we are responsible for what we do, no matter how we feel.

We believe--
that it's taking a long time to become the people we want to be.

We believe--
that you can do something in an instant that will give you heartache for life.

We believe--
that either you control your attitude or it controls you.

We believe--
that heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

We believe--
that money is a lousy way of keeping score.

We believe--
that sometimes when we're angry we have the right to be angry, but that doesn't give us the right to be cruel.

We believe--
that maturity has more to do with what types of experiences you've had and what you've learned from them and less to do with how many birthdays you've celebrated.

We believe--
that it isn't always enough to be forgiven by others. Sometimes you have to learn to forgive yourself.

We believe--
that no matter how bad your heart is broken the world doesn't stop for your grief.

We believe--
that our background and circumstances may have influenced who we are, but we are responsible for who we become.

We believe--
that you shouldn't be so eager to find out a secret. It could change your life forever.

We believe--
that two people can look at the exact same thing and see something totally different.

We believe--
that your life can be changed in a matter of hours by people who don't even know you.

We believe--
that even when you think you have no more to give, when a friend cries out to you, you will find the strength to help.

We believe--
that credentials on the wall do not make you a decent human being.

We believe--
that credentials on the wall do not make you the most learned person.

We believe--
that credentials on the wall DO NOT make you God.

We believe--
that the people you care about most in life are taken from you too soon.

We believe--
in the afterlife.

We believe--
doctors aren't always right; that's why they "practice" medicine.

We believe--
in second opinions, and third, and fourth, and fifth ...

We believe--
in doing whatever it takes to get the job done right the first time.

We believe--
in long-lasting love and marriage.

We believe--
in Jesus Christ, our Lord and Savior.

We believe--
in miracles.

We believe--
Rachel will be cured.

May you have a safe and blessed New Year!

Specific Prayers:
~Thank the Lord for the blessings that 2005 brought to you.
~Thank the Lord that Rachel has beaten the odds and is alive to enjoy the new year.
~That Rachel continue to handle this chemotherapy treatment well.
~That this chemotherapy treatment prove to be the one that brings her into remission and cure.
~That Rachel not have any long-term side effects from chemotherapy, radiation, or surgery.
~That Rachel's Make-A-Wish trip be filled with fun and excitement and clear of any medical issues.
~That Rachel's next scans be clear.
~That it be proven in 2006 that Rachel did receive the miracle of a cure in 2005!!

Tuesday, December 27, 2005 7:53 AM CST

I have been trying to add this new journal entry since early yesterday morning. I will continue to try until it's posted!!

Monday, December 26, 2005 4:58 AM CST
Just like everyone else, it's been a very busy time of year. I didn't even start my Christmas shopping until the Monday before Christmas and didn't finish until Thursday the 22nd and we left the next day! Let me tell you why ...

My mom decided that she was going to make her mom a wallhanging of blue birds--my grandma's favorite bird. Being that my mom was an avid quilter--very experienced and very good--it was a more difficult project that she had chosen to do. The entire thing was going to be appliqued, embroidered and then quilted. Mom chose all the fabrics and took it along when we went to California for Rachel's cancer treatment this spring. While there, Mom accomplished to cut out the birds and the leaves. That's as far as she got. Once we got home, she fell ill from her own cancer treatment and unexpectedly died long before this project was completed.

While going through my mother's things, my sister and I came across the project. We put it aside to be dealt with later. My grandmother knew about the wall hanging and it was just like salt in the wound that my mom wasn't here to finish it.

In September, I got a feeling that I should finish that wall hanging for my grandmother and give it to her on her birthday--December 23rd. I found the project in my mother's things, took it home and disected it. Delusionally, I decided that I could do it (it would be my first quilting project EVER, and I'd never done any of the skills that were required to complete it). I hesitantly took a quilt class--I was afraid that I would miss classes due to Rachel's health and chemo schedule. A week after I started these classes, we switched Rachel's chemo and everything has been going so well for her that allowed me to actually attend EVERY class! I was more than thrilled.

During this time, I was slowly working on this huge undertaking. I would work on it during the evenings and I would take it to the hospital with me. But, at the same time, I was also working on the quilt that was being made for the class I was taking. So, although I was working on the wall hanging, it was slow going. In mid-November, I had resigned myself to the fact that there was no way I was going to get this done in time for my grandmother's birthday and that I would have to give it to her later next year--maybe at the family reunion or something. I put the project aside and concentrated on Thanksgiving. The week after Thanksgiving, this overwhelming feeling washed over me. I needed to finish that wall hanging and I needed to have it done by her birthday!! I told Mark about it and he told me then I needed to do whatever it took to get that wall hanging done. So, for many days, all I did was work on that wall hanging. My family lived on sandwiches and if the house got cleaned or laundry got done it was because Mark did it. That project went with me EVERYWHERE! I told Rachel that I could not play games with her while we were in the hospital for chemo or blood or platelets. She would have to color or watch movies by herself until I got that wall hanging done. I stayed up way too late many evenings (or should I say mornings?) and it was my constant companion. I learned to applique, I learned to embroider and I learned to hand quilt. By Saturday, December 17th, I knew that I would have it done in time and actually set it aside and started planning Christmas.

We celebrated Mark's family Christmas on Sunday, December 18th. This was also the day of the kids' Christmas program. Rachel was an angel, Lance was Joseph, and Blake was a wise man. All three did exceptionally well with their lines, with Rachel just belting out her line like it was something she said everyday! Many people came up to me afterwards and commented on how well she said her line and sang the songs and how they were in tears remembering how far she's come to actually be able to be there. Yes, it was wonderful to watch when you knew how far she'd come.

On Friday, we (my dad, my sister, the three kids and myself) traveled to Worthington to celebrate my grandmother's 86th birthday along with my mother's entire family. Of course, Grandma cried when she opened my gift and then she gave me a shocking fact. My mother had told her that she would have it for Christmas of this year. I did not know that. My grandmother had told one of my aunts that she wouldn't be getting it this Christmas like she was supposed to ... and there it was. I now know why the urging was so strong after Thanksgiving. I know who gave it to me. I know who gave me the initial urging in September, too. I felt my mother's presence an awful lot as I worked on that wall hanging. Sometimes it was so powerful that I spoke out loud to her. Grandma got her wall hanging right on time. If I didn't believe in the afterlife, it would be almost spooky.

Both family Christmas celebrations went very well. We remembered our parents and we missed them, but mainly we celebrated them. There was tons of laughter and fun and many rememberances while only a tear or two shed. I guess the most difficult part of Christmas for my side of the family this year was trying to find the right recipe for Oyster Stew. Mom didn't have it written down, it was in her head! Between my Dad, my sister, my brother and myself we did manage to get it right!! This time, Dad wrote the recipe down!!!!

Christmas Eve candlelight service made us suck our breath in because of words from a child. First, I sang "O Holy Night" as a duet that night but it was Rachel who made the evening deep. She was singing away to the carols, which made many people around us smile and giggle. It was absolutely precious! Then she announced to Mark and his mom, "I like being here." "You like being at church?" "No, I like being here in this world." "You like being here in this world?" "Yes, because the other one is so far away. I like being here better right now." Gulp. Uh, yeah. We like it that way, too. Out of mouths of babes. So, how does she know about the other world? Has she been there that we're not aware of? Does she have memory of it from before? Has she had visits from her grandma or grandpa? Or even Jesus? I won't discount anything. How can I? Her wisdom continues to astound us. We're sure the other world is beautiful and wonderful but we are not ready to go there yet--even if our parents are there, and we're certainly not ready for Rachel to go there, either. Obviously, neither is she. Wonder what she knows ....

Christmas Day was spent entirely relaxing and watching our children enjoy their gifts. Lance got dressed briefly to take his new remote control snowmobile outside for a whirl in the snow, but the battery needed to be charged for 18 hours before it would go very far. So he was back in pretty quickly. Besides that, we were all bums and hung out in our jammies and enjoyed the day watching new movies, napping, and playing with our new Christmas gifts.

Rachel did have to have platelets again this past week. She was having problems with a bloody nose and even missed school because of it. Tomorrow starts yet another round of chemotherapy. We've put in our request to re-take Rachel's Make-A-Wish trip and we're hoping that that will happen yet this winter. As with before, we won't be announcing when the trip is once we find out and we're trusting that no one that actually knows when it is will say anything about it here on the website. This IS the internet ... enough said.

Today, Rachel, myself, and Sarah (my brother's fiance) are going shopping for Rachel's flowergirl dress. She's pretty excited! It should be a fun day for Rachel. Sarah said she really doesn't care what dress Rachel picks out, as long as Rachel likes it. She would prefer it be white, but whatever Rachel likes. This could be interesting!!!

We hope that your Christmas was as spiritual and filled with family and love as ours ended up being. It is always awe inspiring to think of the awesome gift that God gave us in His Son. Actually, inconceivable. We hope that you and yours enjoy this world for years to come as we are praying God will allow our family .... especially one little girl who has been too close to the other world one too many times.

MERRY CHRISTMAS!!!!!!!!!!!!!!!!!!!!!

Specific Prayers:
~Thank the Lord for the gift of His Son and the gift of everlasting life.
~Thank the Lord for the blessings in your life.
~Thank the Lord that Rachel is here this Christmas.
~That Rachel continue to look and feel well.
~That the new chemotherapy treatment continue to work.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel's next scans show NOTHING!
~That Rachel receive the miracle of a cure in 2005!!!

Wednesday, December 14, 2005 9:15 AM CST

Quite an interesting day we had yesterday. All the kids had dentist appointments and Rachel had chemo again. The dentist and oncologist are working together to decide what and when to do what for Rachel. She's got some cavaties where the tooth enamel has been eroded away from the chemotherapy. She needs to have some rather extensive work done and they aren't sure how to proceed at this time due to her counts. Working in the mouth is always an issue with low counts as there is so much bacteria in the mouth and then you cause nicks and wounds and bleeding in there and the bacteria has lots of places to get into the blood stream. Not a good mix when there's not a good white count to battle it. They are also wondering whether they should just sedate her and get it all done in one big bang or if they should do it "normally" by giving her some gas and then novacaine and having it take three visits to get done. Hmmmmmmmm ... I'm kinda leaning towards the "big bang" theory myself. The idea of her having to go through having needles in her mouth three times when she already has so much just isn't my idea of a good time. The oncology nurse was leaning that way before I even really had thought about the whole thing so we'll see what happens between the doctors. .

Rachel ended up needing both red blood cells and platelets--makes for a long day. We were just about ready to leave the hospital at around 8:30 PM when Rachel started complaining that her neck itched. The nurse and I looked, and she had a red welt about the size of a penny on her neck. The nurse looked at me and said, "Hive?" Oh, great. She's reacting to the platelets. So, a call went into the doctor and she ended up getting some benadryl and we had to stick around for another hour to make sure she didn't get more and that that one went away. Thank goodness she didn't get any more and that one did go away. Of course, that meant we didn't get out of there until after 10:00 PM and didn't get home until 11:00 PM--I had left home at 6:50 AM that morning!!! What a day ...

I guess we're just going to have to make sure that she's premedicated everytime she has blood products now. I really hate giving her benadryl sometimes because it makes her really tired. Then, she either gives into sleep--which is GREAT--or she fights the sleep and just becomes crabby--which isn't so great. One never knows which way it's going to be. Wish they'd just give ME the benadryl and let ME sleep!!! I'd do it willingly! Yes, please, ground me to my room for a nap!!

It's snowing BIG TIME at our place. The kids are VERY excited about it. I hear Lance exclaiming to Rachel right now, "SWEET!!! We can make DEEP snow angels!!!" "YEAH!!!" is Rachel's reply. Of course, us adults can only think about the mess it makes for driving and that we have to shovel the stuff. We're expecting up to 10" over the next several days. Oh, yeah. :-)

Specific Prayers:
~That Rachel's teeth be able to be fixed without any issues.
~That the chemotherapy continue to do it's job.
~That the nodules that are left--whatever they may be (scar tissue or live tumor)--shrink to nothing before Rachel's next scans.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth in 2005!!

Wednesday, December 7, 2005 7:49 AM CST

I have the results of the PET scan! Three weeks ago there were two spots that showed up--the lymph nodes in the right hilar region (this means in the right lung near your breastbone) and in the lower base of the right lung towards the back. Since our last scan three weeks ago, the place we go to get this scan done has gotten a new machine and it combines CT scan with PET scan. It's able to give them a much better view of what is going on. We know that there are multiple places that Rachel has nodules of tumor that are not shrinking and don't show up on the PET scan. What we aren't positive about is whether these areas are viable tumor or dead tissue--this is what we hope the PET scan can clarify for us.

The report given by the radiologist says that the CT scan shows multiple nodules in both of Rachels lungs (we knew that) but that the uptake of the dye they inject into her is very low. The radiologist says, "This indicates low metabolic activity and is consistent with non-viable metastatic disease that has responded well to treatment." In other words, dead tissue. The report goes onto say that, "There is only a small area of low level uptake in the posterior right lung base that is unchanged to slightly decreased in prominence from the 11/08/05 PET scan. On the current study, this has an appearance most suggestive of benign inflammatory or post-inflammatory uptake. A small area of residual viable tumor cannot be completely excluded, but is considered less likely." Uh, WHAT?!?!?! According to this report, the radiologist feels that the area in the lower lung is inflammation and no longer tumor. Although it is ultimately what we want, Rachel's oncologist feels that that could be jumping the gun at this time. There was no mention of anything in the right hilar region at all! As a matter of fact, the report continues with, "Pet images of the abdomen and pelvis appear normal. There is no convincing evidence of other areas of residual or recurrent viable tumor." PRAISE GOD!!!!!!!!!!! We are very happy with the results and feel we have received one heck of a Christmas present. The year is ending on an up note!!!!

We will continue with the new chemo and probably do scans again in six weeks. We will need more concrete evidence between all of the scans BEFORE we can undeniably shout that she's cancer-free. Although things are pointing in the right direction, we must remain cautious and not jump to any premature conclusions. But that won't keep me from having a perma-grin on my face or floating about 3-feet above the ground!!!! :-)

Please join us in giving praise and thanks to God!!

Specific Prayers:
~Thank God for the wonderful scan results!
~Thank God for ending a very tough year on a very high note!
~Thank God for answered prayers.
~That Rachel continue to feel well and that all the nodules, whether dead or alive, disintigrate.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth in 2005!!! Hmmmmmmmmmmmm ....

Friday, December 2, 2005 7:41 AM CST

GUESS WHO SLEPT IN HER BED LAST NIGHT?!?!?!?!?!? WOO HOO!!!! Happy Dance, Happy Dance!!!!!! Yesterday afternoon, Rachel asked me to take her tent off of her bed and bring it down to the family room so she could play in it. I told her that if I took everything out of the tent and brought it downstairs that I was not putting it back on her bed and that she would have to sleep in her bed. "I know that," she retorted. "You're sure?" I asked. "Yes. I want to play in my tent." "Okay, but I don't want to hear any crying tonight because I won't put the tent back on the bed." "I won't." And she didn't!! She actually came into my office later in the afternoon and said, "I told Ms. Cummings that I would sleep in my own bed at Christmas and now it's Christmas!" Cool. It's only been since APRIL that she actually slept in her own bed by herself. It really didn't bother us at all that she slept in the tent on her bed. She was in her own room, she was sleeping by herself and she was sleeping well ... who cares that it's in a tent? We didn't. But now she's in her bed!! Oh, man ... one more bed to make now. UGH!!!! Tee hee!!!! Her bed's too high for her to make it herself. She has to use a stool to get up into it.

Rachel is very excited about the fact that Uncle Abe and future auntie Sarah asked her to be the flower girl in their wedding! She's just floating!! (I have to admit that Mommy's pretty excited, too!!!) :-) It's still a long ways off from a 5-yr-old's point of view so we've stopped talking about it now so that it doesn't take forever to happen, because you know, May is forever away!!

Every time I think about Rachel walking down the aisle as the flower girl, I think back to last April. She has come so far! What a miracle God has given us!! To think that in the fall of 2004, the doctors didn't think she'd be around in spring 2005 and here we are talking about May 2006!!! It's absolutely thrilling!! I can't even convey to you how it makes my heart sing. This Christmas with her is truly a gift from heaven. Rachel has taken the dozens of catalogs that have come in the mail and circled all of the things she wants. Let me tell you, we could easily go broke!!! She wants EVERYTHING!!! And, I wish I could get it all for her. Not that it will make anything better or change anything but I just want to shower her because she's here. I won't, because everything has to be "fair" but it's just that jubilation effect happening, I guess. As far as I'm concerned, she's my gift this year. Maybe I should just wrap her up and put her under the tree! Do you think she'd go for that? :-)

Speaking of tree, I'm thinking tomorrow would be a good day for putting that up. Is yours up yet? My Dad has had his up for three weeks already ... don't ask. Blake and Lance are going to a Sib Shop tomorrow (it's a workshop--playshop may be a better word for it--for siblings of sick children). They went to one in the fall and had a blast! The first thing they asked me when they got in the car was, "Can we go to the next one?" So ... they are. After we get home would be a good time to put up the tree.

I'm off to do a Parent Involvement Day in Rachel's class this morning ... we're making gingerbread houses. Then it's off to her PET scan. I won't have results until Monday. Pray for GREAT things!!!!

Specific Prayers:
~Thank the Lord that Rachel is here to celebrate the birth of His son with us.
~That Rachel continue to feel well.
~That the PET scan be totally negative.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth in 2005!!!!!

Wednesday, November 30, 2005 4:40 PM CST

Rachel's oncologist told me that the word on her MRI/CT is that the areas are either stable or smaller. YEAH!!! The areas that have been stable have remained that way and the other areas are smaller. She didn't have anything written on paper yet so I can't tell you exactly which areas are stable and so forth, but hopefully I'll have that in a day or two. Overall, Rachel's doctor was very happy (so are we) and we've decided to stay the course as far as her chemotherapy regiment. We'll continue doing this new chemo being that she's tolerating it so well, the side effects have been minimal and the fact that it's working!

Rachel has a PET scan on Friday but we probably won't have any results from that until Monday. Hopefully we'll see some changes--in the right direction!!

Rachel's hair continues to grow and she's beginning to take on a new look now that she has eyebrows and eyelashes again. The top of her skull is no longer fleshtoned but a bit on the darker side now that there's some hair there. She was pulling on my hair the other day and I told her to knock it off or I'd pull her hair. She started laughing and said, "I don't have any hair." "I'll pull your eyebrows then," I retorted. She thought that was the funniest thing!!

Rachel has really been fighting being hooked up to her vitamin cocktail the past couple of weeks. I told her she either had to be hooked up, take shakes, or swallow pills. "Like Grandma?" My mom used to take a lot of pills. "Yes, like Grandma." She thought about that one for a while and then decided that she wanted to learn to swallow pills rather then be hooked up for several hours a day. So ... we're starting with one of the antibiotics she has to take twice a week (that lovely pink medicine that stains shirts ... just ask Tammy!). It comes in a liquid grape now (not just pink) so we're going to try that. It will save her being hooked up for an extra 1 1/2 hours twice a week. We'll slowly move to some of the other things that are liquid (not much) and then move to smaller pills. If we get that far, we'll just keep moving up to bigger and bigger pills. We can always cut them in half or whatever it takes. If she's willing, I'm willing. It's kind of a catch 22, really. With IV vitamins, you know that all of it's getting into her bloodstream unlike when you take medicine orally--you never know how much is really being digested and how much is just going down your toilet. Also, the insurance company covers part of it when it's IV ... not so when it's oral vitamins because you can get those over the counter. You just can't win.

Her vitamins just beeped that they were done and I offered the grape medicine or to continue being hooked up for another hour and a half. She said she'd take the medicine ... and she LIKED it!!!!! Eeeeegads!!! Miracles are just happening all over the place!!! She again told me she wants to take pills so that she doesn't have to be hooked up .... ALRIGHT!!! Guess we'll slowly start on that one right away.

Specific Prayers:
~Thank the Lord for the shrinkage that showed on the MRI.
~That Rachel's PET scan show another decrease in uptake of dye.
~That Rachel continue to feel well.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!

Monday, November 28, 2005 7:50 PM CST

Rachel had chemo on Friday. Her counts were:

WBC: 1,200
ANC: 762
Hgb: 9.7
Plt: 15,000

We decided to see how her platelets would do over the weekend as her doctor felt that the chemo she had on Friday shouldn't really affect her platelets and hoped she was just bottoming out at that level and would then come back up.

Rachel continued to feel well over the weekend and even went to a movie with her Grandma on Sunday. By bedtime on Sunday, Rachel's temperature was rising and she wasn't feeling well. She ended up getting a fever and a migrain headache that made her puke. I ended up taking her into the ER where they drew blood for cultures and to check her counts and also gave her an antibiotic. Although Rachel's ANC was still hanging in there at 600 (if it had been 200 or below she would've been hospitalized), her platelets were only 8,000. They wanted to give her a transfusion right then rather than having us come back during the day. So, at 1:30 in the morning, we were transferred from the ER to the oncology floor and platelets got started a little after 2:00 am. We left the hospital at 3:00 am and got home at 4:00 am. Such fun. Doesn't allow for much sleep. Hopefully we'll know tomorrow about the blood cultures and if she has a bacterial infection or not.

Today, Rachel is feeling pretty good. A bit on the tired side but okay. She didn't go to school so she just layed around mostly today.

Rachel has a MRI and CT scan on Wednesday of this week and another PET scan on Friday. We are praying for awesome things!!!

Thanksgiving went very well. We had a very good time even though my mom wasn't there. We had a few laughs at Mom's expense and talked about what she would be doing and saying at certain moments but that just brought smiles and good memories. The only tears were when I brought out a school worksheet that Lance had done just a couple of weeks ago that he had written about his grandma and how he could feel her hugs and see her. It just brought it all home as to how much she impacted everyone.

It almost sounds weird to say, but I think we're all coming to terms with the new "normal" of not having Mom around and it didn't feel as if there were a big hole that day. Maybe it's because my family hasn't made it a tradition to be together on Thanksgiving that things didn't feel out of sorts. We do get together, but not every year and not necessarily everyone and not at the same place. I wonder if Christmas will be different. That's always been a time that we spend together and we always did it at Mom and Dad's. I guess we'll find out soon enough how that will be. Mark's family doesn't have a Thanksgiving tradition either, so Christmas will once again be the one that will test us.

I have to thank my Dad for continuing to love and lead his family. He continues to put one foot in front of the other and live his life. He sets a wonderful example for all of us that grieving has it's time and place but so does laughter and living life. Life has not stopped. It continues to move forward. The sun comes up in the morning and it sets in the evening and you have a choice of how you spend the hours in-between. We have all chosen to move on. We love her and we miss her but she's gone. Nothing we do or don't do or say or think will bring her back. Might as well going on living. Heck, she'd haunt us if we didn't!!

And so, we head into the Advent season full steam ahead. We will meet the challenges ahead and we will plow through them. Mark and I will do it together ... and we'll bring our kids with. We're praying that there will continue to be LOTS to be thankful for as we close out this very stinky year. Maybe it will turn out to be a wonderful year after all .... maybe it will be the year Rachel becomes cancer-free. Wouldn't that be the way to top it off?!?!?!

December is quickly approaching. I hear it's supposed to snow tonight ...

Specific Prayers:
~Thank the Lord for his blessing of showing us how to live without Jodi's mom and Mark's dad.
~That Rachel not have a bacterial infection.
~That Rachel remain fever-free.
~That Rachel's MRI, CT and PET scan this week be clear!!!
~That Rachel not have any long-term effects from radiation, surgery, or chemotherapy.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Wednesday, November 23, 2005 7:11 AM CST

School is done for the week and the kids are excited to be home for FIVE days ... uh, yeah. Rachel had chemo again yesterday. We are celebrating ... she's up another pound!!! WOO HOO!!!! She weighed in at 33.2 pounds!!! Happy Dance, Happy Dance!!! Throw in a couple of cartwheels, too--we'll let Missey do those, though!! She's been tired and her legs have been hurting off-and-on. Last night she was REALLY complaining about her left leg hurting (not the one that had surgery). It was to the point that she was crying VERY hard about it. I gave her some Tylenol and she went to bed. I think they're just growing pains because not only has she put on some weight, but she's grown in height over the past few weeks, too--like a half inch!! My legs would hurt, too, if I was growing like that. Going to this new chemo sure has made a difference in many aspects!

On Monday, I went to my hairdresser's (Heidi) and Rachel came with. I brought along some pink hair paint. Heidi washed Rachel's stubble and then put the paint on her whispies. It wasn't anything like any of us expected. I was expecting it to be that hair dye that washes out in 6-8 washings but this stuff was like paint and washed out in the next wash. But, before that even happened, it turned REALLY crusty and stuck to her head. Rachel was NOT liking this at all. Heidi tried to soften them up by spraying them with water. It worked long enough to get home at which time Rachel jumped directly into the bathtub. Lance joined her and the two decided that they would play for awhile. During that playtime, I guess Lance told Rachel the only way she was going to get it out of her hair was to pull the hair out. So, instead of just easily washing it out, she yanked out all of her whispies!!! Can you even fathom??? Yes, Heidi, she pulled them all out!! She didn't have a whole lot of whispies left because the new hair that is coming in is making them fall out, BUT STILL!!! That just had to hurt!!! So much for the pink hair paint. Heidi is going to have some of the stuff we were thinking this was next time we go in. Rachel's stubble will be longer then, too, so it will look better. I tried.

The kids are excited about being home so that they can go hunting with Mark. Mark hunts on our land, so he can easily take each one of them out seperately for a bit. Even if they aren't out very long, they think they're cool!!! Blake is, of course, able to sit for the long haul and he's practicing hard at it because next year he'll actually be able to go hunting while touting a gun. He's so psyched!! Lance and Rachel are a whole different story. Although Lance can tolerate the cold, he can't sit still. Rachel can sit still, but she can't tolerate the cold. Mark is very "gracious" and lets each of them take their turn even if it isn't the best for his deer hunting. As he correctly states, "How else do they learn?" All three want to go tomorrow. We'll see how the turns get divided up.

We have much to be thankful for even during this rotten year. We hope your blessings are too bountiful to count even amongst the devastations. We thank God for the family members and friends who surround us in their prayers, their love and with their physical presence. We thank God for everyone else who remembers our family in their daily thoughts and prayers and whom storm the heavens with requests for Rachel's healing. We truly believe that Rachel would not be where she is today without all of the thousands of prayers that have, and are being, said for her all of the time. Each of you who consistently prays for her are part of that and we thank you for it. Although walking Rachel's Road is not a fun place to travel, we know that we aren't doing it alone. Thank you for continuing to walk with us, support us and pray for us. There are many of you, whom we've never even met, who have touched our lives immensely. Our children know some of you by name even though they've never met you. We are deeply touched, humbled and in total awe of the outpouring of love and prayers that Rachel and our entire family has received not only from those we know, but from complete strangers. You have shown us that overall mankind is good ... it is very good. Thank you from the bottom of our aching hearts.

We don't know where Rachel's Road will curve next. We don't know how many detours, hills, valleys or surprise angles it will take. But we know that you will be there for us. We thank you for that. With your help, she's come so far. Thank you, thank you, thank you!!! Please, keep storming God for Rachel's miracle of a cure!!

Specific Prayers:
~Know that we are thanking God for YOU!
~Thank God for the bountiful blessings in your life.
~Thank God for all of the answered prayers for Rachel.
~Thank God for his all-knowing plan even when it doesn't go our way.
~Thank God for always walking by our side.
~That Rachel continue to feel well during this chemotherapy.
~That Rachel continue to grow but without the growing pains.
~That Rachel's pain be from growing.
~That Rachel's scans next week be clear!!!!
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel receive the miracle of a cure on earth in 2005!!!

Saturday, November 19, 2005 6:51 AM CST

Rachel has decided that the majority of the clothes in her closet just aren't going to cut it for this winter. Because she has no meat on her bones, she tends to get cold pretty easy. And because she's taller than she is big around, button/zipper pants just don't fit right--even if they do have the elastic bands on the inside that you can adjust (I think they must feel really funny because we have to cinch them up so much). Rachel has decided that if it isn't sweat shirt material, or fleece--something warm and snuggly feeling--she isn't wearing it. It also has to have an elastic waist. I may as well get a couple of boxes and just remove 7/8 of her winter clothes from her closet because she's not going to wear them. And because her closet only contains a FEW outfits that qualify that aren't just for "grubby home wear", it means Rachel's going to get some new clothes. Ugh.

Deer hunting started this morning and Mark is out sitting in a tree somewhere on our property. We'll see how much hunting I actually get done this year. Maybe in the mornings after the kids have gone to school ....

As the Thanksgiving season winds up, we are taking note of all of our blessings and everything that we have to be thankful for. Even though it's been a horrific year, it's also been a wonderful one. My mind has been wandering back to last spring an awful lot lately. We have SO much to be thankful for. We could've buried Rachel, too. But we didn't. Instead, she's in kindergarten, she has a part in the Christmas program (a speaking one, at that!), she's being persnickity about her clothes, and she's sliding down snowy hills. That is an AWFUL lot to be thankful for!!! I know that all three of her grandparents that we lost this year are smiling down at her and wouldn't change any of the events that have happened--we'd sure like to, but I bet they wouldn't. We'd like them here. But, what you wish for and what you get can be two TOTALLY different things, can't they? But, Rachel's here. It's a culmination of everyone's prayers and wishes ... even those of grandparents passed on. So many times we heard out of the mouths of the grandpa's, "Why doesn't the Lord just take me and leave Rachel alone?" Are they getting their wish? I don't know. It's looking upwards, though. Even so, we do wonder why all three had to be taken. One would've been more than enough.

As you head out to be with family and friends this week, we pray that your travels are safe, your gatherings joyous, and most of all, that in everything you do ... give thanks.

"But be sure to fear the Lord and serve Him faithfully with all your heart; consider what great things He has done for you." Samuel 14:24

Specific Prayers:
~Give the Lord thanks for the blessings in your own life.
~Give the Lord thanks for the blessing of Rachel and for how she has touched so many.
~Give the Lord thanks that this new chemotherapy is working so well.
~That Rachel continue to feel good during this chemotherapy.
~That Rachel continue to not have any nausea or vomiting.
~That Rachel continue to grow.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel receive the miracle of a cure on earth in 2005!!!!

Thursday, November 17, 2005 3:43 PM CST

Rachel started chemo again on Tuesday. We have to go in for physical therapy today and then tomorrow back in for chemo. She is continueing to handle the chemo very well.

It did snow here yesterday and the kids are LOVING it!! All three of them were outside yesterday--in the cold, wind and snow (even if Auntie Cindy was chicken!)--playing up a storm. The giggles that were coming from outside had me standing at the window several times to watch bundled up children slide down the hill in the backyard. Rachel was totally dressed in pink (what else?) and all that was poking out was twinkling, bright blue eyes, pink cheeks and nose and one huge grin with lots of teeth! She was having a blast!!

Scans remain in place for the week after Thanksgiving. The PET scan did get moved to Friday, December 2--did I just write DECEMBER???, and the MRI/CT is still on Wednesday, November 30 (Happy Birthday, Auntie Pam!!!--Still 29, right?)

The absence of our parents is beginning to make it's presence known, once again. This is the first deer hunting season without Mark's Dad. This is the first Thanksgiving without both Mark's Dad and my Mom. This will be the first Christmas without them both, too. We will have no normalcy anywhere. My sister and I continue to divide my Mother's things between us--it's work; both emotionally and physically. My entire family will be together at my house for Thanksgiving and we all know how strange that's going to be without Mom having a seat at the table or working side-by-side in the kitchen. My sister, my Dad, and I planned the meal--THAT was different ... Mom used to do that. No, we didn't include our brother because as long as the special family corn is being served he doesn't care if there's anything else! :-) Deer season and no Charlie .... that's like Christmas without a tree, mashed potatoes without gravy, or pumpkin pie without whipped cream--or a holiday without "the" corn, huh, Abe? It's going to be different. Everything is. We're starting new traditions and it's always tough to change. We'll get through it, though. We will.

Specific Prayers:
~That Rachel continue to tolerate the chemotherapy well.
~That Rachel not have any nausea.
~That Rachel's upcoming scans be clear!!
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth in 2005!!!!!

Thursday, November 17, 2005 10:11 AM CST

Rachel started chemo again on Tuesday. We have to go in for physical therapy today and then tomorrow back in for chemo. She is continueing to handle the chemo very well.

It did snow here yesterday and the kids are LOVING it!! All three of them were outside yesterday--in the cold, wind and snow (even if Auntie Cindy was chicken!)--playing up a storm. The giggles that were coming from outside had me standing at the window several times to watch bundled up children slide down the hill in the backyard. Rachel was totally dressed in pink (what else?) and all that was poking out was twinkling, bright blue eyes, pink cheeks and nose and one huge grin with lots of teeth! She was having a blast!!

Scans remain in place for the week after Thanksgiving. The PET scan did get moved to Friday, December 2--did I just write DECEMBER???, and the MRI/CT is still on Wednesday, November 30 (Happy Birthday, Auntie Pam!!!--Still 29, right?)

The absence of our parents is beginning to make it's presence known, once again. This is the first deer hunting season without Mark's Dad. This is the first Thanksgiving without both Mark's Dad and my Mom. This will be the first Christmas without them both, too. We will have no normalcy anywhere. My sister and I continue to divide my Mother's things between us--it's work; both emotionally and physically. My entire family will be together at my house for Thanksgiving and we all know how strange that's going to be without Mom having a seat at the table or working side-by-side in the kitchen. My sister, my Dad, and I planned the meal--THAT was different ... Mom used to do that. No, we didn't include our brother because as long as the special family corn is being served he doesn't care if there's anything else! :-) Deer season and no Charlie .... that's like Christmas without a tree, mashed potatoes without gravy, or pumpkin pie without whipped cream--or a holiday without "the" corn, huh, Abe? It's going to be different. Everything is. We're starting new traditions and it's always tough to change. We'll get through it, though. We will.

Specific Prayers:
~That Rachel continue to tolerate the chemotherapy well.
~That Rachel not have any nausea.
~That Rachel's upcoming scans be clear!!
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth in 2005!!!!!

Thursday, November 10, 2005 1:20 PM CST

Hmmmmmmmm .... well, one does think that things aren't working when you repeatedly get the error message "Website not responding". Oh, well.

Lance went back to school on Tuesday (YEAH!) and has a check-up this afternoon. He's doing well and is working hard at getting caught up. A home health care nurse came out yesterday for Rachel and she says that Rachel's lungs are clear, so that's good news, too.

I do have PET scan results--got them this morning. You ready? First, a little background (am I teasing you?): Rachel has been on the new oral med (an immunosuppressant) for four and a half weeks. She's had two weeks of the new chemotherapy drugs which is one full cycle. With that, the overall news it that there has been improvement in her chest since her last PET scan on Sept. 28. There are two areas (one in her lymph nodes in the right hilar region and one on her lower right lung) that are still showing uptake of the dye but the uptake is less than it was before. The rest of the PET scan is NEGATIVE!!!!!! Where it was positive before--in her lungs, medistinum (breast bone area), right abdomen and sacrum (pelvis) is now negative!! WOO HOO!!!!!! We are SO happy. We are SO thankful!!!! Please join us as we give thanks to our Lord for this wonderful response that Rachel's body has had. I find it interesting that there is nothing left on the left side of her lungs--that's the side that about did her in last April. So now we're dealing with two areas in her right lung and those are dieing.

Rachel starts chemo again on Tuesday and will have another PET scan on November 29, and an MRI and CT scan on November 30. We are hoping for continued good news!!!

So, it is with a HUGE grin on my face and the feeling of being filled with helium (I'm floating), that I leave you today. Please, please, please, give thanks where it's needed. Please thank the Lord for this tremendous blessing!

Specific Prayers:
~Profusely thank the Lord for the wonderful results of the lastest PET scan.
~That Rachel continue to feel well.
~That Rachel's counts not drop during the next chemo round.
~That Rachel not have any long-term side effects from chemotherapy, surgery, or radiation.
~That Rachel receive the miracle of a cure on earth in 2005!!!

Monday, November 7, 2005 10:54 AM CST

I have been trying to post this update since Saturday morning but I've been unable to get it to upload. So ... we'll try it again!!!!

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 4:17 PM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 12:20 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 12:20 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 11:38 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Saturday, November 5, 2005 6:58 AM CST

Took Lance back in for a re-check. Although Lance is better than he was on Wednesday, he's not where the doctor would like to see him so his medicine got switched. He now has a different antibiotic and is on a steroid inhaler besides the other inhaler. It's quite comical as Lance LOVES to do the inhalers! When I tell him it's time to do them he jumps up and exclaims, "All right!" I think he likes to challenge himself to see how long he can hold his breath as he does it. He was also quite pleased last night when he took his new antibiotic because it tastes like strawberry milk!

Rachel's oncologist decided to put Rachel on an antibiotic and an inhaler, too. Although Rachel doesn't have pneumonia--she got another chest x-ray yesterday, her oncologist doesn't want her to get it. So, Rachel started on an oral antibiotic--she chose this because Auntie Sarah is taking her for the weekend and swimming is on the agenda. She also has an inhaler and thinks that's neat because now she's like Lance and, as we all know, Lance LOVES to do his! He felt very important last night as he got to show Rachel how to do it.

Rachel's counts continue to remain up ... which we love!! Her counts yesterday were:

WBC: 4,400
ANC: 4,312
Hgb: 6.9
Plt: 64,000

Yes, she got blood yesterday. I think that's why she was having issues with headaches both on Wednesday and again yesterday. I'd have a headache, too, if my hemoglobin were that low. Heck, us adults would be crawling UNDER the bed and whining like crazy about how awful we felt! No complaining from Rachel except about her head. Kids are something else!

Rachel's appointment was at 1:30 yesterday afternoon, but because of having to get blood, we didn't get home until 9:00 in the evening. How sad is that? I'll tell ya, it can just be a rig-a-ma-roll sometimes. Lance went with, of course. The nurses put two beds into the area that we were in for getting blood. We put them side-by-side and played Sorry! on top of the beds and the kids ate an early supper and then both went to sleep!! Rachel, though, decided that Mommy would be more comfortable than the bed and slept on me. Brings back memories of holding sleeping babies. Gently placing your cheek on the top of their heads and breathing in their essence. They just have "that" smell about them. Maybe it's something to do with heads with very little hair because I "feel" that smell with Rachel still. I don't with the boys.

Speaking of heads with very little hair .... Rachel's hair is growing back!!! Really, it is!! Her oncologist told me that another patient that they have on this same chemo never lost their hair. I rubbed the top of Rachel's head--like I always do--a couple of days ago and stopped. I had to bend down and look really close at her head and sure enough! I could see it AND feel it! Just short little stubble coming back. If we choose to stay with this chemo, I guess she'll get her hair back. If we choose to alternate it with the other one, well, it may just be a mean cycle of grow hair-lose hair.

The kids are getting excited that Thanksgiving is just around the corner and Christmas soon after that. Hard to believe it's November already! Lance suggested that we put the Christmas tree up before Thanksgiving so that everyone can see it--we're having Thanksgiving at our house. I told him fat chance getting that one by his Dad! I did have a good giggle over it, though.

We head into another week with things looking fairly good. We're pleased as we can be about how Rachel is handling this new chemotherapy and we pray that it's doing what it needs to be doing because it would be great to keep her on it! Although Tuesday is the PET scan, we won't have results until at least Wednesday, Thursday for sure. Keep praying!!!!

Specific Prayers:
~Thank the Lord that Rachel's x-rays were fine.
~Thank the Lord that Rachel's counts have remained high.
~That Rachel's counts continue to remain high.
~That Rachel not get pneumonia.
~That Lance get over the pneumonia quickly.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Wednesday, November 2, 2005 1:48 PM CST

Wednesday, November 2, 2005 7:26 AM CST

Much to Blake's horror, trick-or-treating was cut short due to Lance getting tired out quicker than normal and Rachel being cold. It also didn't help that Mom fell in a whole while carrying Rachel. While trying to "save" Rachel--which I did, by the way--I ended up getting pretty banged up myself. I can deal with it ... I was just really concerned about Rachel because it could've been bad. Thank goodness the worst thing that happened to her was she got scared. We ended up not going to several places we normally do mainly because of Lance. Rachel was able to warm up in the truck and me ... well, I'm a mom. Yeah, I was bleeding. Yeah, I hurt. Yeah, I had gravel stuck in my hands. But, if my kids would've been up to it, I would've stuck it out. But, Lance just wasn't. The poor honey. There was NO way he was staying home and he had been doing pretty well all day. The fever was down under 100 degrees and he'd been feeling better. We figured we'd let him try it. When Lance had had enough, we quit.

Tuesday morning, Lance's temperature continued to remain below 100 degrees--as a matter of fact, it was normal although he continued to cough. By early afternoon when we needed to head into the clinic so Rachel could get chemotherapy, his temperature was 99.5 degrees. Being that we were going in for chemo, I figured I'd have Rachel's onoclogist look at him and tell me if I needed to take him into see his own pediatrician or if the "crud" was just going around. They looked at him on Friday and said his chest, ears, and throat were clear. Yesterday, his ears and throat were still clear but his lungs were wheezing. She recommended taking him in to get a chest x-ray. Then she listened to Rachel and HER lungs were ALSO wheezing. So, Rachel got a chest x-ray yesterday along with chemotherapy and a side of platelets. Her chest is fine ... no pnemonia--just a cold, I guess. She's got a little cough, but that's it. Because of Rachel needing platelets, I couldn't schedule an appointment for Lance last evening because I had no idea what time we would be getting home. Of course, everything has to be done by your child's OWN pediatrician. Rachel's oncologist couldn't schedule a x-ray for Lance at the hospital because she's not his primary provider. She has to send her OWN kids to the pediatrician and can't order things. It's all the hierarchy the medical community must conform to. So, this morning at 9:00 I'll be taking Lance in for a check-up. Lance's temperature was up to 102.2 degrees last night again so I am starting to get concerned knowing that his chest isn't clear. Hopefully it's just a horrendous cold and nothing fun like bronchitis or, god forbid, pnemonia. But, then again, you can get medicine to get rid of those things where you have to ride out a cold. It's never simple, is it???

Rachel's counts remain fairly high, except for her platelets, although they've dropped quite a bit since Friday. Now remember that they started her on the drug that helps increase the white cells last Wednesday after only one day of chemo. You can figure that her "real" white count and ANC are about half of what is shown because once you quit the drug, it tends to drop in half.

On Friday her counts were:

WBC: 7,200
ANC: 6,840
Hgb: 8.8
Plt: 28,000

Tuesday's counts were:

WBC: 4,400
ANC: 3,212
Hgb: 8.6
Plt: 12,000

They did have her off her drug on Monday and Tuesday (it's something with how it works on the tumor receptors with chemo, or something strange like that) so it's possible that that's part of the drop, too. She's back on it again today and then we'll go from there. I would really like to see her counts stay up like they are and not drop below 1,000. Makes this Mommy feel better as we head into the cold and flu season!!!!

Rachel heads back into the clinic on Friday for another dose of chemotherapy and has a PET scan on Tuesday. Hopefully this scan will be able to show us how well this new regiment is working. She'll have been on the oral drug for four weeks and will have had a full round of the new chemo. Rachel continues to remain nausea-free and hopefully, if her counts stay up, we won't have any issues with bacterial infections this round! Wouldn't we love that!?!?!?!?!

I found I had to giggle with joy a bit yesterday when Rachel's nurse told me that the radiologist had a bit of trouble reading Rachel's chest x-ray because the last chest x-ray she had was in June and there is just such a HUGE difference in the amount of change of her lung disease. I think I just sat there with a stupid Cheshire cat grin on my face!!! :-) To think that so many people had Rachel not making it into the new year of 2005 and here she is heading head strong into 2006!!! THANK YOU, GOD!!!! How do you properly give thanks for something so tremendously awesome?????

Specific Prayers:
~Thank the Lord for his gift of Rachel and for making her defeat the odds.
~Thank the Lord that Rachel's x-rays were fine.
~That Rachel's counts remain high.
~That Rachel not get whatever Lance has.
~That Lance doesn't have pnemonia.
~That Rachel remain fever- and nausea-free this chemo round.
~That the PET scan show drastic improvement in her disease.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Monday, October 31, 2005 1:28 PM CST

GUESS WHAT?!?!?!?!?!?!?!?! I'm getting a sister-in-law!!!!!! WOO HOO!!!! My "little" brother (yeah, he stands 6'4", but who's counting???) is getting married!!! We are SO excited!!! We absolutely adore his fiance and we're so happy for them!! I had to wait a bit to put it into the journal so that they could make all of those phone calls so if he hasn't made them by now ... well .... guess I'm breaking the news! WOO HOO!!! Happy Dance, Happy Dance!!!!! :-) When I told Rachel that Uncle Abe was going to ask his girlfriend, Sarah, to marry him she looked at me with a big grin and said, "How many kids do you think they should have?" I busted out laughing and told her that I thought we should leave that up to them ... and let's at least let them get married!!!! Oh, too funny!

Rachel thought she could pull a fast one on Mommy this week, but it didn't work!! She had yet to drink her medicine (the one mixed into orange juice) before school the other day. I told her to hurry up and drink it because we had to get to the bus. She told me that she had to go to the bathroom and walked in and shut the door. I was putting on my shoes and coat to take her to the bus. I heard water running in the bathroom sink but never heard the toilet flush. She came walking out of the bathroom holding her empty juice glass and a big grin on her face. "I finished it, Mommy!" she exclaimed. Hmmmmmmmmmm ... yeah, right you did. "Did you dump it down the drain, Rachel?" Uh, yeah ... the conversation pretty much went downhill from there. I ended up making another glass of medicine, she ended up gulping it down, and she learned that dumping medicine down the drain doesn't exactly cut it with Mommy and that I can see through walls. :-) NO, I didn't tell her that but I think she thinks it!! I really wasn't sure if I should laugh or get mad. I mean, I did it once when I was 6 ... shhhhhhhhh!!! I wasn't dumb enough to get caught, though!!! I guess my Mom's not around any longer to keep it quiet from but Rachel doesn't need to know about it quite yet!!

Lance is home sick ... yesterday he had a fever of 104 degrees and was projectile vomiting. Today he is much better but I'm not sure what's going to happen with the trick-or-treating. He wants to go shopping for a tractor RIGHT NOW (guess he's feeling better, huh?) but we'll see how he's feeling in a couple of hours. Maybe I have ammunition to make him take a nap, huh???

Rachel has chemotherapy again tomorrow and then also on Friday depending on her counts. Her counts were VERY high this past Friday so we'll see what's happened to them over the weekend. She's looking kinda bruised so she may need platelets tomorrow. Besides that, she's doing fine. She's very excited about the trick-or-treating tonight. A PET scan is scheduled for next week.

Specific Prayers:
~That Lance get better so he can return to school this week.
~That Rachel not get whatever Lance has.
~That Rachel's counts remain high enough to receive chemotherapy.
~That Rachel remain nausea-free.
~That Rachel not have any long-term side effects from chemotherapy, surgery or radiation.
~That Rachel receive the miracle of a cure on earth in 2005!!!!!

Thursday, October 27, 2005 10:23 AM CDT

Saturday morning we were up bright and early and at the train station by 6:45 am!! WHEW! We took the train to Wisconsin Dells (a four hour trip) and enjoyed all of the beautiful scenery along the way. The trees were gorgeous and it was fun to sit back and enjoy the view along the Mississippi river. The kids loved the tunnel we went through and all of the horn blowing the train does. I can't exactly rave about the food but it was edible.

We had a cabin with a full kitchen and a fireplace. The kids enjoyed feeding the very friendly squirrels on the deck and eating popcorn in front of the fire at night--our fireplace at home isn't in yet so this was a real treat. Another reason Rachel chose to have oral meds was so we could take out her needle and she could go swimming! The kids swam everyday we were there. It's amazing how much one doesn't realize how we just take advantage of everything and don't appreciate things like freely being able to go swimming. Rachel LOVED it! The place our cabin was at had a small indoor water play area with two slides, swings, teeter totter, etc. at it. One day we went to a HUGE indoor water park and enjoyed going down all of the large slides. All three kids had a blast with those! We also went mini-golfing, rode go-karts, went through TWO haunted houses (UGH!), played a family interactive game searching for wizards--what an absolute BLAST (Mark and I weren't too thrilled about doing this but Blake wanted to do it BADLY and we ended up having a lot of fun) and a host of other things.

The interactive game we played was called Wizard Quest. We had 90 minutes in which to find and free four wizards. The first challenge was to even find these wizards. The four represented fire, water, earth and air. There were rooms done up with these themes and there were mazes, rooms within rooms, tunnels, slides, ladders, etc. that you had to hunt down both the wizards and answers to questions. You then went to a computer and put in your answers to these questions (we were given a sheet of questions at the start of the game). If you were correct you earned points, if not, you lost points. You used the points you earned to free the wizards. Each question was worth 20 points if you were right and each wizard took 200-250 points to free. We had SO much fun running around together looking for clues. The kids had a blast climbing, going through tunnels, bumping into mirrors in the mirror maze, etc. Yes, we were successful--barely! We had about 5 minutes left to go. It was highly interactive and a lot of fun for families.

We came home on the train Monday evening. The kids keep asking if we can go to Wisconsin Dells during the summer. They want to do the outdoor waterparks, the amusement parks, etc. It does sound like a lot of fun, but I bet the crowds in the summer are ridiculous. We didn't have to fight ANY crowds and our max wait time anywhere--including the restaurants--was five minutes. Kinda like it like that. It is quite the place to see ... totally built around tourism. A lot of the places were shut down but there was still SO MUCH that was open. We had a lot of fun.

Besides the mini-getaway, Rachel started her new chemotherapy regiman on Tuesday. This week she gets chemo on Tuesday and Friday and we had to start the white cell booster drug already yesterday. This is very different from anything we've ever done before. Next week she gets chemo again on Tuesday and Friday--if her counts are high enough to handle it. This could be very interesting. We're going to do a PET scan already two weeks from now as the pathologist feels this new drug we're doing at home to help the chemotherapy should already show a change in her tumors. She will have full scans again in about a month.

Once again, Rachel has not needed any drugs for nausea or vomiting ... they were expecting she would. GO, RACHEL!! Although she's hooked up several hours everyday, I do really think that nutritional cocktail is helping A LOT!! She was very tired yesterday and chose not to go school. She just layed around all day and went to bed early. She was bright-eyed and bushy-tailed this morning and excited to get back to school. Not sure if yesterday was from the new chemo, the let-down from the weekend, or both. Doesn't matter, really.

We'll see how much this new chemo takes her down and how she handles it. Hopefully, she'll breeze through it.

Specific Prayers:
~Thank the Lord for the fun, safe travel we had.
~That Rachel's counts stay up so she can have chemo again next week.
~That Rachel remain fever-free.
~That Rachel not get another bacterial infection this chemo round.
~That the PET scan show shrinkage of the tumors.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure on earth in 2005!!!!

Friday, October 21, 2005 8:31 AM CDT

During Parent Involvement Day on Wednesday in Rachel's class, we decorated a pumpkin. Rachel's turned out to be Fairy Godmother Tammy!!! It's too cute!! I'll get a picture posted of Rachel and her pumpkin as soon as I take one. She's kinda grumpy at me this morning because of something SHE chose to do. Here's the story:

Rachel had a clinic appointment yesterday to get her counts checked. She ended up having low hemoglobin so she got another blood transfusion. No reaction this time ... WHEW!! And they chose NOT to pre-med her for it, either. I think they kinda wanted to see what she'd do. Anyway, the sensitivities came back for her bacterial infection (that means that there's now a listing of different antibiotics that work against that exact bacteria). They changed it to an antibiotic that is only given every 12 hours instead of every 8. Makes it a little easier all the way around. And, Rachel decided that she didn't want to be hooked up to meds for another 2 1/2 hours a day so she chose to take the oral medicine!!!!! Can you believe it??? Okay, incentives were given, but she made the decision. So, this morning when it came time to take that medicine, she decided to play games. Uh, uh ... mom's not having it. I'll just pick up that phone and get the IV meds sent over -- simple as that. I'm not playing games. When she saw that I was serious, she opened her mouth and grudgingly took it. So now she's grumpy. Oh, well. Mom feels REAL bad about that. Yeah, right. :-)

Her phosphorus continues to be low so I've got to figure out a way to get the phosphorus supplement into her and figure out how to get high phosphorus foods into her. Being that both bran and yogurt are high in phosphorus, I'm thinking about making some bran muffins and substituting the oil with the yogurt. Wonder if the heat from baking takes out any phosphorus? Going to have to find that out. Sure doesn't take out the calories, does it??? Speaking of which, Rachel's up to 31.4 pounds!! Hope it wasn't just the heavier clothing now that the temperatures are getting cooler. Actually, it seems that since she started this new drug that she takes everyday mixed in orange juice, her appetite has been up!! This is SUCH a good thing. I did read in one of the studies about this drug that the patient they were following had increased appetite and actually gained weight during treatment. That would be a god-send!! She needs to continue to gain weight or she's going to end up with some-sort of tube again. We really aren't looking forward to having to go there. She never gained any weight when she had a tube before, yet that's what the doctor is throwing out there right now. I told her that I wasn't even going to think about it now that Rachel's appetite has been increasing. We're going to see what she does over the next couple of weeks. Hopefully she'll just continue to eat and eat and eat. Heck, she ate TWO lunches yesterday! You GO, Girl!!!

I guess baking and research are in line for today's activities. On a cold, cloudy day like today it actually sounds like a great thing to be doing! Except my arm hurts--got that darn flu shot yesterday! Our entire family has to get them because of Rachel. Guess it's worth it!

Specific Prayers:
~That Rachel take her oral medication without a fight.
~That Rachel remain fever-free.
~That Rachel's blood cultures from yesterday be negative.
~That Rachel take the phosphorus supplement.
~That Rachel eat the muffins.
~That the new treatment kill all of the cancer.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel receive the miracle of a cure on earth in 2005!!!!

Tuesday, October 18, 2005 11:43 AM CDT

Rachel is home from school today. Yesterday, she got home from school and happily plunked her backpack on the floor and asked Mark if they could go on a bike ride. We have one of those child bikes that you attach to the back of an adult bike. So, the two of them took off--Rachel just LOVES it!! When they got back, I fed her lunch and plugged her into her medicine pump. She hardly touched her lunch and Mark said that she felt warm when he moved her to a different chair so that she could watch television while she was getting her meds. I took her temp and she was 101.2. Hmmmmmmmmm .... this is supposed to be her good week. Well, she was just outside biking and she was sitting in the sun during lunch ... maybe that's the problem. Mark took her sweater off of her and I decided that I would wait 30-40 minutes and see what it was then. We had to leave in 45 minutes for a clinic visit to check counts, anyway. Her temperature was 101.4 then. DRAT! I packed our bags (because I had no idea what her counts were) and we went in--Rachel slept the whole way in. When we got there, her temperature was 98.1. Okay. Her counts were:

WBC: 700
ANC: 400
Hgb: 7.6
Plt: 6,000

Well, at least she's got SOME counts! They did choose to draw blood cultures but weren't too concerned at that time. She got a platelet transfusion and before the platelets started her temperature went up to 101.5. The doctor decided that since her counts were "up" (and ANC over 200) that she should just have a dose of Tylenol and an antibiotic. I was told to just keep giving her Tylenol if she needed it but if her temp spiked high to get our tail back into the hospital. Before leaving, Rachel's temperature was 102.2.

This morning she's sitting right at 100.0. Been there all morning, so far. She hasn't acted sick either two days. The only way I know she's got a higher than normal temperature is because sometimes she feels warmer and, of course, the thermometer is saying so. She was pretty ticked this morning that she couldn't go to school. "Can I have a friend over?" has been the question of the morning. She's not too pleased about this at all!!!

The kids got their halloween costumes and are already having a blast in them. I have ninjas, power rangers, and knights running around. Hmmmmmmmm .... all "violent". Yep. Oh, well. Swords, and guns, and magical powers ... oh, my!! Rachel chose to be a power ranger this year. I have NO idea why--they don't watch them. I think she thought the outfit was "cool". You won't guess the color ... PINK!!! So unbefitting of her, isn't it???? She was going to be a kitty but totally changed her mind when she saw THAT pink power ranger outfit. She absolutely loves the mask. "No one will know who I am! Except for my beautiful blue eyes." Do ya think she's been told that a time or two???? Tee hee!!!! But, she's right! Those beautiful blue eyes are all that shows through her mask and they are REALLY set off by the pink. I just about had to snort when she said it though!!! They are counting down until they get to go trick-or-treating! Every night at supper they have to recount.

The kids have MEA on Thursday and Friday of this week. For those of you not in Minnesota, it has to do with our teachers getting a couple of days off allowing them to attend conferences and such that are going on those days in our state. Obviously, no teachers means no school. We've got clinic appointments and play dates with friends to accomplish on those days. The idea that it was only a 3-day school week has been rather exciting to a few in our family. I'm assuming she'll need blood around then, too.

Chemotherapy is to once again start next week. Can't believe that it's here already. The plan is to probably do a different drug and I don't know the exact schedule of it yet. We'll get that nailed down in the next day or two.

Beside being home today, Rachel continues to just "keep going". The last couple of weeks, we've run into several doctors, respiratory specialists, and nurses whom all helped care for her last April when she was on the ventilator and expected to die. They are all absolutely amazed by her. It's really fun to see their reactions! They are so happy for her. So are we!! :-)

While typing up the specific prayers, I got a phone call from Rachel's nurse. The blood cultures they drew yesterday came back positive. This means that Rachel is back on antibiotics again. Darn it all anyway! They also said that if Rachel is still feeling fine tomorrow, that she can go back to school.

Specific Prayers:
~That Rachel's temperature return to normal.
~That the bacterial infection go away.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel be given the miracle of a cure in 2005!!!!

Thursday, October 13, 2005 9:07 PM CDT

I have had some troubles getting into the area I need to be in to be able to change the journal entry--must be the time of day I've been trying to get into it or something.

On Monday, I got a call from Rachel's teacher saying that Rachel was saying she was tired and wanted to go home. Hmmmmmmmmmm ... that has low hemoglobin written all over it. We drove right up to the hospital and found that her counts were:

WBC: 300
ANC: 48
Hgb: 7.5
Plt: 19,000

Her hemoglobin wasn't actually as low as I thought it would be, but she's still entitled to be tired with it where it was at! We gave her both a platelet and red blood cell transfusion that afternoon. About 1/2 hour into getting her red blood cells, I noticed a lump the size of an egg on the back of Rachel's head. It had a red splotch on it about the size of a nickel. Below that about an inch, was another red splotch about the size of a nickel. That made me furrow my brow. I got the nurse who took a look at it and immediately stopped the blood and called the doctor. They're calling it an allergic reaction. Although a very unusual reaction--they generally run a fever, get the chills, or have a rash--still a reaction. They gave her more benadryl (they do that beforehand anyway) and some steroids and let her sit awhile with just fluids running. The lump went down quite a bit. Then the blood was started again and we watched the lump. It did end up getting bigger but never got to the size it had been in the beginning. We finished the blood and then had to wait a while to watch how she reacted. I left to go pick up Rachel from school at 10:15 am and we got home from the hospital at 9:00 pm. What a total waste of a day. We had to do it, but still.

Because we have ran out of donor blood and because there is no one signed up to donate, Rachel is just getting the "run of the mill" blood from the blood bank. If you have given for Rachel before and would be willing to do it again (and it's been 8 weeks since you last gave), please contact my sister, Sarah, or myself. If you haven't given but would like to, you must be able to donate in the Twin Cities (we'll give you the details) and you must be blood type B ... O does not work for pediatrics. Our great appreciation to anyone able to do this for her.

It seems that Rachel is tolerating her new chemotherapy pretty well. We're at Day 10 and still at home!!! :-) She's also taking the oral medicine like a trooper. I'm able to mix it into orange juice (the drug manufacturer recommends that) and there's no taste to it!! She drinks it right down. Now we have to have lab work done to check the blood levels of it. The drug has to be taken at a consistant time each day and Rachel's is at breakfast and they need the blood drawn right BEFORE a dose is given. The clinic decided that I am capable of drawing blood and sending it to the lab. I am now officially a nurse!! Tee hee!!!! So, tomorrow morning I will get my tubes and draw blood from Rachel and send it to the University of Minnesota to be tested. I just have to giggle about that. The next thing you know, I'll be starting IV's! NOT!!!! This will be happening multiple times while she's on this drug.

Lance has FOUR teeth loose so Rachel keeps wiggling hers in hopes of having a loose one. Too funny! She does announce to everyone whenever we talk about Lance's teeth that her teeth are "growing up" ... her 6 year molars are coming in. She has been complaining about one of her teeth and it looks like that tooth is missing quite a bit of enamel--that would be from the chemotherapy. We'll have to have the doctor look at it. She can't have her teeth cleaned while she's on treatment so if she needs it fixed it could be something we'll have to weigh heavily. The mouth is so full of bacteria that cleaning them or having any work done can cause serious issues with those who have compromised immune systems.

We've decided to take a mini-vacation this fall and will take a train over to the Wisconsin Dells. Once again, I'm not going to advertise the dates that we're going because this is the internet ... but we're all looking forward to a little escape. The kids are so excited about riding on a train! That's the reason we chose Wisconsin Dells--the train goes there. It should be fun. The kids have already decided that they want to go to more places than our schedule will allow! Hopefully all will be well with everyone's health when it's time to go.

Specific Prayers:
~Thank the Lord that Rachel takes her medicine without a fight.
~Thank the Lord that Rachel hasn't had a fever.
~Thank the Lord that Rachel is tolerating this new treatment.
~That Rachel remain fever-free.
~That Rachel's counts rise quickly.
~That Rachel continue to take her medicine without fighting.
~For safe travel for our family when we go on our trip.
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth in 2005!!!

Sunday, October 9, 2005 12:47 AM CDT

Rachel had a Nursery Rhyme show on Friday that was just WAY too cute! Each kindergartener had their own nursery rhyme to say. They each went up on stage one at a time and stood in front of the microphone in front of all of their families and friends and said their nursery rhyme. It was absolutely adorable! Not only were the nursery rhymes from Mother Goose, some were from the NEW Mother Goose book!

Rachel's nursery rhyme was Little Miss Muffet.

Little Miss Muffet
Sat on a tuffet
Eating an ice cream cone
Along came a spider
Who sat down beside her
She told him to go get his own.

What a hoot!! Rachel said her nursery rhyme as clear as a bell and didn't show any signs of being nervous. We were so proud! :-) Grandpa, Tammy, Aunt Cindy and cousin Josie were all in attendance besides Mommy. What a fun time.

Specific Prayers:
~That Rachel remain fever-free.
~That the new treament quickly rid Rachel of all of the cancer and put her into remission.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel receive the miracle of a cure on earth in 2005!!!!

Thursday, October 6, 2005 8:34 AM CDT

Rachel's treatments continue to go well. It's REALLY nice to only have to have a 1/2 hour treatment. We're in, we're out, we're DONE! Except for the days she needs transfusions (much too often, I'm sorry to say), then we're there FOREVER!!! I'm kinda wondering what's going to happen today, actually. I'm also liking the fact that today is our last day and that tomorrow we don't have to go back up there. It's a gift of time!! Always use more of that. Rachel has continued to not need any nausea/vomiting medication--they are finding that hard to believe. She is continueing to go to school this week. It's the next 5-7 days that I'm interested in. We don't know how this is going to affect her. Will her counts go as low? Will they go lower? Will she not be as "sick"? Will she be "sicker"? Will she take the oral medication? Now THAT'S the REAL question ...

Guess what? Rachel has gained weight!!!! WOO HOO!!! She's up a pound (hey, we'll take ANYTHING!!!). She's now a whopping 31 pounds. Some of you have 8 month olds bigger than that, don't you?!?!?! Tee hee!!! One study showed that this oral drug we're going to put her on actually increased the appetite of the patient. I would LOVE that side effect!!!

Rachel and I are going to have lunch at school today with Lance. We have to be to the clinic earlier today because Rachel has physical therapy, so rather than her getting home and immediately packing her into the car and having a packed lunch on-the-go, I'm going to get her at school and we'll just eat with Lance. Who do you think is going to love that the most??? I'm not sure yet ... Lance because his mom and sister are there or Rachel because she gets to eat lunch with the "big" kids???? Could be a toss up!

Specific Prayers:
~Thank the Lord that Rachel isn't have any nausea or vomiting with this chemotherapy.
~That she continue to not have any nausea or vomiting.
~That Rachel's counts come back quickly.
~That Rachel remain fever-free.
~That the new treament quickly rid Rachel of all of the cancer and put her into remission.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel receive the miracle of a cure on earth in 2005!!!!

Tuesday, October 4, 2005 6:46 PM CDT

It was a fun birthday weekend for Lance. We went out for dinner on Friday night and shopping for his present--a new bike. He was SO thrilled!!!! Saturday we went to the bowling alley with a group of his friends and had a blast. That evening we went to the Twins game with Rachel's kindergarten class. The Twins won!! Woo hoo!!! :-) On the large board Rachel's teacher got "Happy 7th Birthday Lance Hansen Love, Rachel" on there. You should've seen his face when he saw his name up on the large screen! His eyes literally popped out of his head, his mouth dropped to the floor and he just giggled and giggled and giggled. It absolutely made his night!!! Tammy went with to the game and bought Rachel cotton candy. As you can see from the picture above, Rachel couldn't quite stuff it in fast enough! Ick!!! :-) On Sunday, the grandparents and godparents came over for a birthday dinner. Lance thoroughly enjoyed every minute of his birthday this year and I know he appreciated being the center of attention!

As far as Rachel is concerned, we have chosen to go in a little bit different direction with her treatment. She has been on three different chemotherapy drugs. After disecting what the pathologist has found with the pathways of Rachel's tumor, we (her oncologist and us) have decided to drop one of the drugs she's been on and up the dose of one of the two that are left. She will get that for four days and then she will start an oral drug that is a "signaling blocking agent" (this is a new drug) that the pathologist feels will work with Rachel's tumor. She will take that drug for 3-4 weeks (the doctor, pharmacist and pathologist are still determining exactly how long), go off of it for two days and then will get another chemotherapy drug that she's never seen before. After receiving that drug (and they may add two drugs, actually), she will then have a day of rest and then start the oral drug again. The plan right now is to alternate the different chemo drugs and use the "blocking agent" in between. According to the pathologist, the data that he has on Rachel's tumor supports this logic.

So, yesterday she started on the higher dose of chemo. She hasn't needed any drugs for nausea, but the pharmacist said that there is moderate nausea at this dose. Yesterday we chose to give her one dose of the anti-nausea medicine but she didn't need any more. Today we chose to go without it and she hasn't had any problems. They are quite surprised. I think that the vitamins, minerals and anti-oxidants are helping with that!

As of yesterday, Rachel's counts were:

WBC: 1,800
ANC: 1,026
Hgb: 9.3
Plt: 19,000

She did receive a platelet transfusion today. Tomorrow I will have to take Rachel out of school early because they don't have any appointments on Wednesday afternoons--we will need to be there by 11:30-Noon. We were really hoping to avoid that, but I guess missing 45 minutes to an hour once during chemo week isn't too bad. Let's just hope that she's able to tolerate this and not end up in the hospital next week!!

By the way, Rachel is now sleeping in her tent ON her bed. One step closer ... right!?!?!?! Tee hee!!!!

Specific Prayers:
~Thank the Lord that Rachel isn't have any nausea or vomiting with this chemotherapy.
~That she continue to not have any nausea or vomiting.
~That Rachel's counts come back quickly.
~That Rachel remain fever-free.
~That the new treament quickly rid Rachel of all of the cancer and put her into remission.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel receive the miracle of a cure on earth in 2005!!!!

Friday, September 30, 2005 12:24 AM CDT

We finally have the results of all of the scans. The first thing I want to say is that I have yet to see the scans. What I am reporting is strictly going only from the reports. The quick, short, overall impression is that there has been mild-moderate improvement. The more detailed report follows.

The CT scan shows that the size and number of the tumors in her lungs is improved--what was there is either gone or smaller. All of the fluid that was on her lungs is now completely gone. All of her solid organs (kidneys, liver, etc.) look normal.

The MRI shows that the tumor in her right abdominal area is smaller. It shows that the tumors on her spine, sacrum, and left femur continue to be stable.

The PET scan shows that the area of uptake of dye within the chest and abdomen is both smaller and less prominent than before. There is still no uptake in her spine, sacrum or femur.

Overall, we have changes in her lungs and abdominal tumors on all of the scans and everything else is where it was before. Again, it's possible that the tumors on her spine, sacrum and femur are just dead tissue that hasn't been reabsorbed into her body. Being that everything else is shrinking and that those areas continue to not uptake any dye in the PET scan, I'm really beginning to lean in that direction.

Although it's not the "all clear" we would all like to hear, it is certainly going in the right direction!! We had Rachel's tumor examined by a scientist who looked at the pathways and expressions of her tumor. He has given us some suggestions on drugs as to what would work to shutoff those pathways and help kill the tumor. We are looking into whether we should add a drug to her cocktail or switch directions all together. We are getting results, so we hate to just drop everything we're doing. We also don't want to make her so sick by adding more drugs that we take her to the brink of death with each and every chemotherapy. The side effects can kill her, too. What it means is more research. We plan on having a conclusion by Monday morning. So between all of the birthday celebrations going on for Lance this weekend, I'll be doing research.

Specific Prayers:
~Thank the Lord for the shrinkage of tumors and continued improvement in Rachel's tumor status.
~Thank the Lord for continuing to stay by Rachel's side and for the hope that He provides.
~Thank the Lord for all of the doctors who try so hard to do the best they can for Rachel.
~That Lance have a wonderful 7th birthday.
~For discernment for Mark and Jodi as we research and make decisions concerning Rachel's treatment options.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel receive the miracle of a cure on earth in 2005!!!

Thursday, September 29, 2005 3:31 PM CDT

All of the scans are done and the procedures themselves went well and were uneventful. We, too, continue to wait ... and wait ... and wait. Each time the phone rings I have baited anticipation that jumps to my throat and then is agonizingly subdued when I find it's not the doctor. Waiting is just so hard.

Rachel's counts as of Tuesday:

WBC: 2,000
ANC: 1,260
Hgb: 12.1
Plt: 45,000

Can you believe that Hemoglobin???? WOW!!! I'm sure that since we've finished the white cell boosting drug that her ANC has dropped in half. We'll check her counts again on Monday in hopes that everything is high enough to start chemo--can you believe it's time for chemo again?

Still waiting, waiting, waiting. I'll update when we know anything. Keep praying!!!!! :-)

Specific Prayers:
~That Rachel's scans be clear!
~That Rachel receive the miracle of a cure on earth in 2005!!!!!

Sunday, September 25, 2005 8:12 PM CDT

Just a note to those of you interested in the kids' school fund raisers: Blake's is due on this Tuesday and Rachel and Lance's is due this Friday. If you are wanting to do this, please do so now.

Rachel ended up having both red blood cells and platelets on Friday. Made for another long day. We continue to do her antibiotics and with everything else, there are days that she's hooked up for a very long time--six hours straight on some days. Oh, well ... it's worth it. A home healthcare nurse will be coming out either tomorrow or Tuesday to draw labs and we'll see if she needs platelets. Rachel has completely run out of donated blood, if you are B+ and would like to donate for her, please let me know! If you have already given blood for Rachel and would like to do so again, you can give blood every 8 weeks.

Rachel will be having a PET scan on Wednesday and a MRI and CT scan on Thursday. She will only miss school on Thursday because she has to be sedated and can't eat for 8 hours before-hand so it's scheduled for early in the morning. We are very hopeful about what these scans will show. Her outward physical signs just continue to improve so we can't help but be hopeful for what's happening on the inside. The tumor that is in her spine was pushing on a nerve and causing intermitant pain in her left leg. We haven't heard her complain of any pain in her left leg for about six weeks or so. We're thinking that that must mean that the tumor is no longer pushing on that nerve. Why? Well ... must've shrunk, right??? :-) Also, the fact that her stamina has increased so greatly lately--she's walking a mile by herself, would tell you that her lung capacity has increased. Why? Well ... how does shrunken tumors sound for increased lung capacity? Either that or she's grown another lung. Uh, yeah. So ... we're hopeful. We have to be. We are praying for great things. Please, please, please pray with us as we expect another miracle for Rachel.

Rachel continues to astound the oncology community. They can't believe she's still walking on the face of this earth. The fact that she started kindergarten is just something that none of them was expecting. We want Rachel to be sending her doctors pictures of HER child starting kindergarten!! To do this, she has some pretty hefty odds to beat. Yes, things are going well ... we need it to continue. We've been told that the number of people who have survived a relapse of Ewing's can be counted on one hand. Being involved for three years like we have, we believe that number is higher than that because we do know several of them ourselves, but we are realistic about how terrible the odds are. She needs that miracle.

Rachel has now had 8 chemotherapy treatments since we started them again this past spring. They were hoping she could do between 9-12 treatments. Right now, it's looking like she'll make that. It would be great to have no tumors in her body BEFORE we reach the 12th treatment. Depending on what we find on Wednesday and Thursday, will determine which direction we go with treatment--adding drugs, staying the course, going off in a total other direction. We won't have results of the scans until probably Friday (maybe preliminary results from the MRI and CT on Thursday night). It's going to be a long week!

Lance's birthday is Friday so we're busy planning a party. He wants to go bowling. We'll have his party on Saturday and then the family will come on Sunday. He's pretty excited!

Rachel continues to sleep in her tent. She's in her room, she's by herself, and we have no idea why she won't sleep in her bed. Whatever.

Please pray extra hard this week!!

Specific Prayers:
~That Rachel remain fever-free.
~That Rachel remain free of bacterial infections.
~That Rachel's scans come back clear!!! (We'll pray BIG!!!)
~That Rachel not have any long-term side effects from chemotherapy, radiation or surgery.
~That Rachel receive the miracle of a cure on earth in 2005!!!!

Friday, September 23, 2005 5:38 AM CDT

Because I got a barrage of emails asking me to put the links to the kids' fund raisers on here and because some of you have repeated those emails because I have yet to do so ... I will put the links above. That was almost painful to write! :-)

Yes, Rachel climbed on that big yellow bus (I swear those steps are as big as she is!) and went to school yesterday. Her teacher called me after school and said that all though Rachel hung right in there with all of them, she was tired. When Rachel got home, I asked her how the day went. "Good!" "Were you tired?" "NO!" she exclaimed emphatically. Uh, yeah ... okay. God forbid that if she said yes she might not be able to go, you know! I EXPECT her to be tired! She has no counts! You and I would be crawling not only into bed but UNDER it! This is where that emotional part of cancer plays into it. We have to let Rachel have some control over this. She knows her limits. Yes, she may have been tired yesterday, but she knows her body better than even I do. She knows how she feels. I guarantee you, if she had felt like crap yesterday she wouldn't have gone. Tired is one thing, feeling icky is another. And, it's not as if any of us has ever been tired at work before, right? Right. She gets to come home before lunch and then take a nap in the afternoon. If she weren't doing what she needed to be doing, or just sat in her chair and cried and whined, or any of those detestable things then I'd say she needed to stay home. But she kept right up. She has every intention of going to school today, too. She knows her limits better than anyone and as her parents, we have to take that into account. Heck, she wanted to go to a friend's house after school yesterday because it's "boring" at home. I did say no to that one.

Because of having to give medications every 8 hours, I am going to bed late and getting up early ... speaking of tired. If I'm managing about six hours of sleep a night, that's about it. Sure hope her blood cultures stay negative because I don't think I'll be able to keep this up for much more than a week!

We head into clinic after school today to get her counts checked and I'm sure she will need some sort of blood product ... probably platelets. Speaking of napping, they pre-medicate her with Tylenol and Benadryl for blood products to help with any allergic reaction that could happen. The Benadryl puts her right to sleep! I've often wished they would give ME some of that so that I could curl up right next to her.

Thanks again for your continued prayers and support as we travel Rachel's Road.

Specific Prayers:
~That Rachel remain fever-free.
~That Rachel's blood cultures remain negative.
~That Rachel's counts rise quickly.
~That Rachel not have any long-term side effects from surgery, radiation or chemotherapy.
~That Rachel receive the miracle of a cure on earth in 2005!!!!