History

Tuesday, April 27, 2010 9:58 AM CDT

Five years. Could it really be? The calendar says so, but my heart says otherwise. It's amazing how our memories can come back so strong and vivid after all this time.

This morning we all went to Mass together, and tears came to my eyes as Father announced the Mass intention was for our family. Right now I'm thinking about how, if Jessie was still here, her first question this morning would have been, "Is it still Easter?" Yes, Sweet Pea, it IS still Easter . . . and I'm looking forward to the day when we can all celebrate the eternal Easter with you every day.

I miss you, Sweet Pea. But I know you're up there in Heaven with the rest of the saints, watching over us and eating cookies.

St. Jessica, pray for us!

Love,
Daddy

Tuesday, April 6, 2010 6:53 AM CDT

Happy Easter to all!

As I was sitting in Mass on Sunday morning, I was brought to tears thinking, this is Jessie's time. She passed away during the Easter season five years ago. During her last month, the first thing she'd ask me every morning was, "Is it still Easter?" She was so excited to think that Easter wasn't just one day. Oh, that we could all have such childlike faith! And now she's with the risen Christ, celebrating the ultimate and eternal Easter.

I miss you, Sweet Pea! Thanks for looking out for us all.

Thanks for keeping up with our family. We continue to appreciate all your thoughts and prayers.

Tim

Saturday, July 25, 2009 9:54 PM CDT

Happy birthday, sweet pea!

Gee, could this really be your eighth birthday? It doesn't seem possible. With every passing year, I have more trouble imagining you at that age.

Tonight we took our neighbors the Froistads out for ice cream to celebrate (okay, so no one actually SAID so, but I was thinking it). I'm sure you would have approved. You would certainly have been out running around with Dena and Sidney and having a great time.

Thanks to everyone who has been keeping up with us. We really do appreciate your continued thoughts and prayers.

Tim

Saturday, July 25, 2009 9:54 PM CDT

Monday, April 27, 2009 10:06 AM CDT

Can it really be four years now since Jessie went home? The calendar says yes, but my mind says it can't possibly be.

We had First Communion last weekend at Blessed Sacrament. This would have been Jessie's class, but when I looked at those kids, I just couldn't imagine Jessie being there. To me she'll always be three years old.

We are all doing well. Thanks for keeping us in your thoughts and prayers. I know St. Jessica is watching over us.

Tim

Wednesday, January 28, 2009 8:26 AM CST

Another milestone day . . . As of today, it has been the same length of time since Jessie died as she was with us. This might seem like kind of a strange milestone to mark, but the thought has been with me for some time now. And yet every memory seems as fresh as yesterday.

Jessie would now be seven and a half years old. Her class in school are now second graders and preparing for their First Communion. But I look at them and really can't visualize Jessie there with them. In my mind she will always be three years old, my beautiful, sweet, innocent little girl with big eyes and a big heart.

I miss you, Sweet Pea. Thank you for being my own little guardian angel.

Love,
Daddy

Friday, July 25, 2008 8:18 AM CDT

Happy birthday, sweet pea!

It doesn't seem possible that we have now celebrated more birthdays without you than while you were with us. It's hard to imagine you as a seven-year-old . . . in my mind you'll always be three.

Today Toni and Dena are doing a holy hour at church, then going to the zoo with friends. Tonight we'll do something special to celebrate, don't know what yet but I'm sure it'll be something Jessie would enjoy.

(We didn't get to go for lunch at the zoo as we hoped. We did hang out with a wonderful friend and her family and went to the pool and then Tim arrived and we had a cook out at their house and my sister and niece came too and then we put up corn. I do think that Jessica would have enjoyed that.)

In June we took a vacation trip to Montana for a wedding. Along the way we went to Wind Cave, Mount Rushmore, Devils Tower, Little Big Horn, Glacier, Yellowstone, and Grand Teton National Parks, and Fort Laramie. We also panned for sapphires in western Montana - much like panning for gold. Along the way we spent time with both sets of grandparents and celebrated Dena's 10th birthday. She came back with junior ranger badges from seven different parks. She's just the right age to really start appreciating all the things we saw and did.

Last night we went out and got Dena a French horn for band next year. She's growing up so fast. This year she'll be in fifth grade already. Time seems to move faster every day.

Please keep the family of Jonah Borngrebe in your prayers. Jonah is a two-year-old boy who has been diagnosed with a rare, rapidly-growing brain tumor. He has already undergone two surgeries in the past two months to remove large tumors, the latest just this week at St. Jude's. They have a long road ahead of them yet.

Thanks for checking in on us. We really appreciate your thoughts and prayers on this special day and always.

Tim

Wednesday, July 25, 2007 8:54 PM CDT

Happy birthday, Sweet Pea!

Today would have been Jessie's sixth birthday. It's hard to believe she's been gone half a lifetime already. Her memory is still so fresh in our minds that it seems like only yesterday she was here with us.

Today Dena made a birthday cake. Then after supper we went to the zoo, took a train ride, and ate ice cream on Jessie's bench. Those little things remind us of the special place Jessie still holds in our lives and helps keep her alive in our hearts.

Thanks for checking in on us. Your thoughts and prayers mean a great deal to us.

Tim

Wednesday, July 25, 2007 8:54 PM CDT

Friday, April 27, 2007 9:30 AM CDT

ADDITION from Toni May 21, 2007

Tomorrow is Kindergarten Graduation and this would have been Jessica's class. The teacher and the students asked if they could put a rose near the alter for Jessica. I will be cantor for their Graduation Mass. I'm praying for strength. I was cantor on her death day, and actually I think it was the best thing for me to do that day.

It's not easy at all. This journey is still painful. There is a different quality to the pain. I have several "Grief Bursts", but most of the time I can get composed quickly. There are some times when I can't. So I guess this is the way it's going to be.

Jessica, I'm so glad I got to be your Mommy and I still miss you more than I can say.

Love, Mommy

Friday, April 27, 2007

Today marks two years since we lost Jessica. Some days it seems like a lifetime ago, other days it seems like just yesterday. Life gets a little more "normal" every day, but I can still look around and see things that remind me of her everywhere . . . little memories that still bring a smile or a tear.

Two weekends ago we went to a remembrance ceremony at Children's Hospital in Omaha. It was the first time I'd been there in two and a half years, and a flood of memories came back to me. We saw some of the doctors who treated her, as well as some of the families that Toni got to know while Jessie was there for treatment. For me, the hardest part was watching the video that they put together from photos the families sent in. I was really struck by all the pictures of newborns with tubes sticking out of their bodies. As much as it hurt to lose Jessie, at least we have a lot of happy memories to carry with us. So many of these families never even got to take their babies home . . . these kids never got to play with their siblings or friends, never got to go to the zoo or the farm, never got to have a pet or a birthday party or a visit from Santa Claus or the Easter bunny. I couldn't help but think how truly blessed we were to have had the time we had with Jessie.

I love you and miss you, Sweet Pea! Be sure to save some cookies for the rest of us.

Love,
Daddy

Thursday, November 9, 2006 11:27 AM CST

When you're down to nothing, God is up to something.

This is beautiful! Try not to cry.

She jumped up as soon as she saw the surgeon come out of the operating room. She said, "How is my little boy? Is he going to be all right? When can I see him?"

The surgeon said, "I'm sorry. We did all we could, but your boy didn't make it."

Sally said, "Why do little children get cancer? Doesn't God care any more? Where were you, God, when my son needed you?"

The surgeon asked, "Would you like some time alone with your son? One of the nurses will be out in a few minutes, before he's transported to the university."

Sally asked the nurse to stay with her while she said goodbye to son. She ran her fingers lovingly through his thick red curly hair. "Would you like a lock of his hair?" the nurse asked.

Sally nodded yes. The nurse cut a lock of the boy's hair, put it in a plastic bag and handed it to Sally.

The mother said, "It was Jimmy's idea to donate his body to the University for study. He said it might help somebody else. I said no at first, but Jimmy said, 'Mom, I won't be using it after I die. Maybe it will help some other little boy spend one more day with his Mom.ТФ She went on, "My Jimmy had a heart of gold. Always thinking of someone else. Always wanting to help others if he could."

Sally walked out of Children's Mercy Hospital for the last time, after spending most of the last six months there. She put the bag with Jimmy's belongings on the seat beside her in the car.

The drive home was difficult. It was even harder to enter the empty house. She carried Jimmy's belongings and the plastic bag with the lock of his hair to her son's room.
She started placing the model cars and other personal things back in his room exactly where he had always kept them. She laid down across his bed and, hugging his pillow, cried herself to sleep.

It was around midnight when Sally awoke. Laying beside her on the bed was a folded letter. The letter said:

"Dear Mom, I know you're going to miss me, but don't think that I will ever forget you, or stop loving you, just 'cause I'm not around to say "I Love You". I will always love you, Mom, even more with each day. Someday we will see each other again. Until then, if you want to adopt a little boy so you won't be so lonely, that's okay with me. He can have my room and old stuff to play with. But, if you decide to get a girl instead, she probably wouldn't like the same things us boys do. You'll have to buy her dolls and stuff girls like, you know. Don't be sad thinking about me. This really is a neat place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will take a long time to see everything. The angels are so cool. I love to watch them fly. And, you know what? Jesus doesn't look like any of his pictures. Yet, when I saw Him, I knew it was Him. Jesus himself took me to see GOD! And guess what, Mom? I got to sit on God's knee and talk to Him, like I was somebody important. That's when I told Him that I wanted to write you a letter, to tell you goodbye and everything. But I already knew that wasn't allowed. Well, you know what Mom? God handed me some paper and His own personal pen to write you this letter. I think Gabriel is the name of the angel who is going to drop this letter off to you. God said for me to give you the answer to one of the questions you asked Him, 'Where was He when I needed him?' God said He was in the same place with me, as when His son Jesus was on the cross. He was right there, as He always is with all His children. Oh, by the way, Mom, no one else can see what I've written except you. To everyone else this is just a blank piece of paper. Isn't that cool? I have to give God His pen back now. He needs it to write some more names in the Book of Life. Tonight I get to sit at the table with Jesus for supper. I'm sure the food will be great

УOh, I almost forgot to tell you. I don't hurt anymore. The cancer is all gone. I'm glad because I couldn't stand that pain anymore and God couldn't stand to see me hurt so much either. That's when He sent The Angel of Mercy to come get me. The Angel said I was a Special Delivery! How about that?

УSigned with Love from God, Jesus & Me.Ф

Thursday, September 28, 2006 9:19 PM CDT

Sometimes God's presence is so...so...evident, obvious, so....I can't think of the word because we all know He is present, but sometimes the evidence of it makes me tremble.

Ardena and I were out to supper from shopping for cousin's birthday present. There was a man there with his kids and I thought I saw them a church a couple of times. He must have been thinking the same thing because we were looking at each other in that kind of way. Well, of course I'm going to say something. Sure enough. Then he was wondering about Ardena, he thoughg he knew her from somewhere else. He thought maybe the H.U.G.S. camp. Sure enough. He was the one who video taped the sessions and then produced a video of it and remembered that Ardena was the one that was talking a lot. So then we told them our story of why we were at the camp. Talked about church and such. Nice to share opinions with them of Fr. Sullivan being nononsense and right on. Then we decided we had better focus on our meal. Then he was talking on the phone and things seemed tense. He received news that his cousin's 4 year old, who they thought had an infection, was diagnosed with cancer. Similar events leading up as Jessica. Limping and then pneumonia, then waking up to a nightmare. It seems a different kind of cancer than Jessica had. Seems a better success rate in treatment. He asked for my number. Of course I'd be willing to give very practical information on navigating this nightmare.

Please pray for this family and this child. I don't even know their names. I do remember the name of the man I spoke with tonight. I wonder if he has that same trembling that I have about God's presence.

God Bless,

Toni

Sunday, September 10, 2006 10:38 PM CDT

Addition: 9-15-06

God sure knows how to send things our way when we need them. Yesterday when I was picking up Ardena from school, one of the kindergarteners ran up to me and gave me a hug like I was the love of her life. Wow.

Addition: 9-13-06

Well, God sure knows how to send things our way when we need them. I subbed for Kindergarten this week. I was wondering how my emotions would be. Well ... THOSE kids are SPIRITED! And I stand corrected. I do not think that Jessica would have been the most spirited of the bunch. I'm sure that she would have been in the middle of it with all of them, but certainly not the MOST spirited. Great bunch of kids. Loved their energy. Bright and SPIRITED. Please keep their teacher in your prayers.

Sunday, September 10, 2006

Jessica would have started Kindergarten this year.

I think she would have been one of the most spirited kids in the class. RogetТs New MillenniumЩ Thesaurus: Spirited. Synonyms: active, alert, bold, bouncy, chipper, dauntless, eager, fearless, fiery, gutsy, hyper, intrepid, jumpy, keen, like gangbusters, mettlesome, nervy, passionate, peppy, plucky, rocking, sharp, spunky, valiant, vivacious, zappy, zingy, zippy. Yep, that is the Jessica that we knew and loved.

I was talking last week with a mom that I met from being substitute teacher last year with her older child. When I brought up that Jessica would have been in Kindergarten this year, she told me that her younger child is in that class. It felt like the air was sucked out of my lungs because it really hit again how much we miss her. But in addition to loosing her, I'm loosing being room mom with this mom and getting to know her through having children the same age. I know I can still get to know her, but it just felt like a punch in the stomach when I realized that our kids could have been best buds.

These are the children that Jessica would be making friends with, going to their birthday parties, learning to roller skate with, doing the schoolТs Christmas Programs, preparing for First Communion, riding bikes, playing in band, dances, driving, dating, graduating, marriage, sending their children to KindergartenЕ.

I really love knowing the kids that Ardena goes to school with and I value the friendships that we have developed with their parents and even some of their grandparents. It really hit hard when I realized that we lost all of this too when we lost our Jessica.

I hadn't cried like that for a very long time. I kind of thought I was doing pretty good. It does feel like we've found that energy that pulls us through each day and has us looking forward to the future. It's good to have that feeling back. It felt awful when it felt like the other shoe was going to drop.

I still don't have back that feeling that the future will always be great. I guess that's what you have when you are young and in love and don't think of all the other stuff that all kinds of people deal with every day. What's good though is that the other kinds of rough spots in life don't seem so rough now.

I guess a general update on other things might be appreciated by some of you who still check in. I'm not sure if many do check in anymore.

We had family reunions on both Tim's side and my side. Fun. Tim got the "Skunk on a Stick", so that means that he/we will be hosting the next reunion on his side on his mom's side. He made a wonderful cookbook for this year's reunion. He continues to lead music for Mass in the Folk Choir every Sunday that he can. I think that he's been doing this since he was 11 years old. This is one of the reasons I fell in love with him. He's teaching himself how the play the banjo. And I think he'll be learning to play an accordion named "Bruce".

Ardena is in Third Grade. Loves being back in school. Fought us tooth and nail about continuing piano lessons. But we did not back down. Her wonderful piano teacher gave us guidance on how to deal with her. I guess her piano teacher didn't want to take lessons when she was younger either. She will be reading the Gospel readings and the Responsorial Psalms for school Mass when her class does this. So we've been showing her the difference in reading out loud to yourself and reading out loud to other people. I demonstrated to her reading her reading with the emphasis on the wrong words. She told me that it sounded dopey. So, I guess she is believing me that there is a way to do it so that it sounds really good. Ardena was ready to make the room her room, so we moved Jessica's bed out and she choose a pink that is so pink that Tim thinks it would give most people a head ache. Most parents that see it agree.

I'm still doing my thing. Going to MOMs group. Borrowing kids to take when I can. Substitute teaching at the school. Cutting back on leading so many of the school Masses. Some other parents have volunteered - so that is great that the kids get to see that many parents are wanting to do this. Taking on some interesting sewing projects. It's hard to find medical grade compression belts for very large people. The particular need a gal in church had was for healing the incisions after abdominal surgery. Her wounds were not healing the way they needed to. I came up with a way to join wide elastic strips and then velcro to help hold in place. News is that it did the trick. Comments from the wound care center about the elastic and velcro were that it looked like it came from a manufacturer. I tried something new in the garden. I read on the internet about organic fertilizer. I didn't want to stink up the place with fish scales like my cousin did, but I did read about Epsom salt and used it. Applied after the first blooms. So much fruit came on that all the plants fell over. They were supposed to be the kind that you don't have to stake up. Still though the tomatoes were great.

Our church needs to raise money to expand and repair the high school. Our parish is has a goal of raising over $800,000 dollars. The high school is bursting at the seams. Father has asked Tim and I if we would be a couple that could help with the fundraising. Neither of us consider this our strong point. But we are willing to go the meeting to see how our strengths might me used. I guess what is pushing me to get out of my comfort zone on this is how much I value our school. I like it that our school is with our parish and that we know the families and kids. It feels truly like our community and it feels like home. It feels like small town. These are the kids that I want my children to grow up with. I wish the school was big enough to have all the kids in the parish in it. I pray that we do well with the fundraising.

Well, I've rambled a bit.

God Bless You All,

Toni

Friday, July 28, 2006 9:54 PM CDT

Jessica's Birthday was Tuesday. Ardena and I were at Grandpa Bruce's and Grandma Jeanne's. We made a gooy fudgy chocolate cake and Ardena wrote Jessica's name on it with whipped cream from a can.

We sure miss her.

Toni

Tuesday, June 20, 2006 6:33 PM CDT

My friend Diane (Angel Josh's Mom) sent the information below:

http://www.itvs.org/outreach/lioninthehouse/

Above is an address for a program that will run on PBS tomorrow and Thursday, June 21 and 22. It runs from 8:00 - 10:00 pm.

It is a documentery that follows 5 childhood cancer families over 6 years. It tells the stories of these families. Some are survivors and some have lost their children. I have heard it is awesome.

Monday, June 5, 2006 1:16 PM CDT

Well, we've made it through another Easter season with Jessie watching over us . . . we continue to feel her presence in so many ways . . .

Over the Memorial Day weekend we traveled out to the farm. Dena wanted to put some wildflowers on Jessie's grave, so we walked out in the pasture and picked handfuls of flowers, which we left for Jessie and the rest of our family members. Someone had placed four pinwheels around her marker . . . something she would have loved.

Everyday the pain is a little less, but the ache never completely goes away. We continue to keep ourselves busy with various summer activities but often stop to think about how much Jessie would have enjoyed participating in them with us.

Meanwhile other families continue to struggle with the same things we've dealt with. Please pray for the family of Jessie's friend Skylar, who lost his battle with neuroblastoma a couple of weeks ago and is now enjoying cookies with Jessie.

Friday, April 14, 2006 4:00 PM CDT

A blessed Good Friday to all.

Hard to believe that a year ago at Easter, we were just coming to terms with Jessica's relapse. The holiday had a special poignancy, with the awareness that she probably wouldn't be with us much longer.

This year I find myself with a slightly different appreciation for the Resurrection, knowing that Jessie is in heaven now waiting for the rest of us to catch up.

We miss you, Sweet Pea.

Tim

Add: April 17,2006

The opening day at the Lincoln Children's Zoo was Saturday, April 15, 2006. Two of Jessica's favorite things was the Children's Zoo and Runza. So, we decided to go to Runza and then go to the Zoo to look for Jessica's bench there. We knew that the zoo staff thought it would be in place this Spring, but did not know where it is placed. When at Runza, we read a card that was put on our tray. It was a card advertizing for the Children's Zoo and inviting people to come. The card had some animal facts on it. Ours was about the Debrazza's Monkeys, something about liking to pick their fruit early in the morning. We got to the zoo and looked and looked, but had a hard time finding her bench. We thought that they might put it by the butterflies. It just so happened that Ardena found Jessica's bench in front of the Debrazza's Monkey cage. It made me feel like Jessica was letting us know that she was with us. That she was glad to know we were going to the zoo and that she already knew where her bench was, was trying to help us find it, and is glad that it is there.

Last year Jessica was so excited to know that Easter was not over on Easter Sunday, that Easter lasted a long time. On the day that she was confirmed she told Father Sullivan, "It's still Easter!". She asked us every morning if it was still Easter and of course it was at the time so we said yes.

Happy Easter,

Toni

Monday, March 20, 2006 2:33 PM CST

A friend sent me the below writing and prayer. I thought I would share it here because it says so much.

--Toni

Suggested reading: Psalm 137: 1-6

One does not have to be under arrest to be a captive; and one does not have to travel away from home to be in a foreign land. The cares and concerns of job or family, health or finances can seem like shackles -- a weight that will never lift or being exiled from a former, happier life.

While expecting to praise God under such circumstances may seem foolish, a more serious concern is that we will forget God's love, past blessings and continued presence. Such memory is really a lifeline. It provides hope that one day the shackles will be removed, the exile will cease and the heart will once again feel free to sing God's praise.

Prayer: Compassionate God, help us to feel your presence in times of overwhelming pain, sorrow or despair. Give us the hope for restoration to a peaceful time when, contented, we can once again sing your praises.
Amen.

Deaconess Eva Schindhelm
Mukwanago, Wisconsin

We give permission to reprint with credit to
DeacPost, Lutheran Deaconess Association.

Wednesday, March 1, 2006 1:28 PM CST

Add: March 16, 2006

A family that we met at Children's Hospital when Jessica was recieving treatment there could use some prayers right now. Their child has the same cancer that Jessica did. http://www.caringbridge.org/ne/skylarberry/

God help us.

____________________________________

Two years ago today we were in shock. It was the day after JessicaТs doctorТs found a mass in her abdomen. They did not know for sure yet what it was. A couple of weeks earlier, we took Ardena in to be checked for strep throat because a girlfriend informed me that her kids still had it even though they took their antibiotics. We had been over to play, so if our kids had any symptoms, good to have it checked. Well, Ardena had been coughing. I decided that since we were there, they might as well check Jessica too. She didnТt really have any symptoms other than normal toddler stuff. Some days she did not eat much. Some days kind of cranky. Some days she would get ear infections. She had some trouble with constipation and eczema. Most days, she was just her happy and wonderful self. Both strep tests were negative, but they found Jessica to have a very low grade fever. Said, bring her back in three days to check that fever again, if she does, maybe weТll check for bladder infection, since she had had one of those too in the past. Three days again, low grade fever still there. No bladder infection. Bring her back in three days to check again. To tell you the truth, I thought that it must not be too much to worry about because the fever is so low. I was sharing my opinion on that when Jessica and I picked up Ardena from school. But, ArdenaТs Kindergarten teacher made a comment that itТs the low ones that can really mean something bad. The morning we were to take her in, she woke and looked pale to me. Also, the day before, she was running out of her room and stopped and shook her leg and said her foot hurt. But then she zoomed off to play. It was an odd thing to see because to me it looked like she guarded her tummy, but said her foot hurt. I was having an upper respiratory thing Ц cold or something that had settled into my lungs. When I took her in, her doctor agreed that she looked pale and decided to check for pneumonia, incase she might have the respiratory thing I was having, but not the symptoms. Well, the x-ray did show pneumonia. So her doctor gave her two shots of Rocephen to help her fight that. Well, that night, she vomited so much that she got dehydrated and the next day she was hospitalized. I canТt remember how long we were there. Four days maybe. The pneumonia got better, but she still had a low grade fever. Her doctor wanted to review all that had been going on. So I recounted all that I could remember going on the last month or so. One weekend she had a limp after they were playing on the slides at the school play ground. Tim recalled that she tripped when walking up the steps to the slide, and thought that maybe twisted it or something. But then the limp got better a couple of days later. Then there was the episode about the thing about her shaking her leg but holding her tummy. And the low grade fever that held on. So the doctor decided to do a CT scan and found the mass.

IТve prayed for her doctors and nurses often. I think about how they must have felt to have to deliver such devastating news to a family about their child.

Our lives were changed forever. Nothing could have prepared us for the journey ahead of us. ItТs the unthinkable.

Even knowing there was a mass and that they thought it was Neuroblastoma did not equate to me that we might loose her. I was scared and worried and I cried. But I had expected that this would have a fix and that then we would go on with our lives. It just did not register with me that it was THAT serious. I guess I thought that kids with a critical illness would look sick or disfigured somehow. Now I know that that is not the case.

Jessica was such a beautiful and bright and athletic child. Jessica could go up to the edge of a table and grab on with her hands and then swing her legs forward and put her feet over her shoulders behind her ears and then just swing there like that. I thought for sure that gymnastics was in her future. She was articulate and loved to sing. I remember when she was just about to turn two, I was traveling with the girls out West and we were driving along the South Platte River. The trees in the river had lots of leaves and it was the time of day that the leaves glowed. Jessica saw that and said, УHey, Dena, look at those trees. Let's sing a song about them green trees.Ф Just about to turn TWO and she would think and say so much. A couple of months before that we were at TimТs parents and I had told the girls that one of the neat things about being on the farm was that we could see the sun come up. So they wanted to get up early and watch the sun come up. So we were out on the step watching. They got tired of waiting and went back in the house. I made a comment about how it takes patience, that the sun does not come up like a piece of toast. Well, a little while later, Tim and Jessica and I were walking around the house and she noticed the sun, it was up far enough and looked like a half circle. Jessica said, УLook, the sun did come up like a piece of toast!Ф I responded by saying, УJessica, you do not miss a thing, do you.Ф She responded to that by saying, УI do too, I miss you, Mommy.Ф

We miss you too, Jessica. I loved being your Mommy. I loved you and Ardena being sisters. I loved us all being a family. We miss you too, Jessica.

Wednesday, February 1, 2006 10:48 AM CST

Here are a couple of families and little girls who could use some extra prayers right now:

http://www.christithomas.blogspot.com/

http://www.caringbridge.org/tn/madelyn/

These young women have the same cancer that Jessica did.

Our family is trying to heal and to find that special energy that pulls us through each day and helps us look forward to the future. But we never forget where we have been and those who are making that same painful journey.

God Help Us.

Toni

Tuesday, January 24, 2006 12:31 AM CST

I thought I'd post something. I know and appreciate that you all like my writing. But I have to tell you that I just don't know what to write here right now. Well, I'm not having the brain to write any good ideas or good rambles. Maybe I can just write basic updates.

We had nice holiday visits. It was hard at times, but still nice to see family and friends.

I found a Girls Scout troop for Ardena to join. Our school doesn't have one for her age, so I called the school that she went to pre-school at and they said they would be glad to have her. I thought about being the leader for our school, but I didn't think I really had my mind/heart in the right place for it.

I also tried to find a 4-H group she could join, but haven't heard back. She is really bored with just Tim and I. She isn't really into sports, but she really needs some peers to hang out with.

Mainly just finding something to pull us through every day right now.

-Toni

Wednesday, January 4, 2006 7:25 AM CST

Please pray for Tim's dear friend Brian and his wife Amy as they are coping with the sudden death of their baby, Cole Kitt. Please pray for safe travel for the family and friends who are traveling to support and give comfort to them and their family. May God's loving guidance help them through this.

Monday, December 5, 2005 11:20 AM CST

Well, I just wanted to get a new message up because the last one was so "down". I go through that and then feel ashamed because I'm feeling so down. Really, there is so much to be thankful for.

I'm needing to do a better job at having fun activities for Ardena. She is very bored at home with just me or just me and Tim. She's seven. If anyone has any suggestions, please share. I am stumped - not because I am dumb, but because a mom's grief brain just does not work well at those kinds of things.

Tim did a wonderful beautiful thing yesterday. In memory of Jessica's love for Runza, he tried making them himself. The house smelled so good and they turned out great.

Take Care,

Toni

Friday, November 25, 2005 10:44 AM CST

Please pray for the family of Liam Kane. He received his angel wings on the 19th. He had the same cancer as Jessica did. Please pray for the family of Morgan Oldfield, a 4 year old girl who passed away last week from cancer. My heart breaks for these families.

Please pray for my family as many of us are all traveling this weekend for my Grandma RebaТs funeral. She died on her 90th birthday. Some of us are feeling that this is her way of driving home the point about her family throwing a 90th Birthday Party for her last year and it wasnТt even her 90th Birthday then Ц but nobody knew it.

There are some things that happen that just make me believe that Jessica is making her presence known and giving her stamp of approval. It also makes me believe that she has been hanging out with Pope John Paul II. I had asked a bookstore if they could try to locate a library bound version or a hard backed version of a certain book that I was wanting to donate to the school library in JessicaТs memory. It was a book on the Pope about when he was a kid. The gal at the bookstore seemed fairly frustrated but willing with the tasks and with all the calls that she was making. She finally got through to someone and asked if the book was available in those bindings. She was told that, no, the book was only for sale in the paperback. The gal then made a comment something to the effect that the request was from a mom wanting to purchase the book as a memorial for her daughter and would be disappointed. The person she was speaking to on the phone then said something like, you know what, IТm the author of that book and I can get my hands on a hardback version and would be glad to make that available to that mom. I picked the book up from the bookstore and found that the author had signed it. How cool is that?!

One of the motivators I had for agreeing to lead the music every morning for school services was to help me gain strength in getting through Mass without crying. I thought that if I had to focus on the music and the Mass that then my mind would be less likely to wander to my despair. Now that IТm more confident with my skills, my mind is back to wandering easily to my despair, so then I start to cry right in front of everyone. ItТs quite a struggle to get my mind back where it needs to be to make it through Mass. I havenТt totally broken down, but there have been a couple of times when the tears go down my cheek. I donТt think too many notice. Maybe they do, but it doesnТt seem to disrupt things too much. I donТt know what I was thinking when I chose some of the hymns Ц words like pain and comfort and despair Ц who wouldnТt cry!

IТve been having a really hard time lately. IТve been feeling very vulnerable. It feels like I canТt exhale, like IТm waiting for the other foot to drop. IТm back to the kind of crying where the tears shoot straight out. I know that there is no way around all of this, but maybe a different kind of busy would help. I really am struggling with my identity or purpose. I still want to hang out with the MOMs group because they are some really neat women, but I do not have any young kids to take with me. I feel like the grandma of the group. Can a person my age feel like a grandma? I guess there are many my age who are grandmas. IТm feeling closer to Tim now. I am feeling more like his wife again than his roommate. I wish I were doing better at being his wife. He deserves much more. Tim says he thinks I do a good job of loving him and Ardena. But still, itТs my own pain that makes me question everything. And then I go into feeling guilty for even having this despair because I know that so many other people have situations that are extremely difficult. IТm still struck with how I just want to be alone so often. But then being alone is so painful. Or, I want to be around people who do not really know what has gone on. ItТs like seeing people that I know brings back the pain. But then I love my family and my friends and know that itТs good to be around people that love me, but it is hard. Maybe it would be easier if when were together we had an activity to focus on, one with a goal to reach. Also I find that many of thoughts are just so unspeakable. So, this is the mind of one grieving mother. I donТt like this at all. Maybe I need a more intense focus or a different kind of focus. Before, when we were keeping busy with summer activities and such it seemed that I felt like I could defeat or outsmart this pain and not really have to go through it. I know that there is no such thing, but I was looking for anything to numb the pain Ц even if just the illusion of it being numbed with the business.

Well, IТm rambling. Hope you all had a nice Thanksgiving.

Toni

Friday, October 21, 2005 11:21 AM CDT

10-25-2005 Please pray for the family of Brooke Brion. They are facing this same tremendously sad journey right now. Her caringbridge web site is at ne/brooke. Brooke's mom, Darby, was so friendly and supportive when we were first facing diagnosis and treatment with Jessica. Thank you, Darby. Peace be with you.

We have been very busy. Birthday parties and picnics and having cousins over and The Great Pumpkin Run, Fest Quest and field trips.

Guess what happens when the friend of your seven-year-old gets a huge pack of bubble gum at their birthday party. Well, your seven-year-old ends up with a wad of gum as big as a golf ball in her mouth. And during the ride home she gets bored and she takes it out of her mouth and it gets stuck in all ten of her fingers and then she canТt unbuckle her seatbelt to get out and then mom is left to think of what home remedies will get that crap off. We tried peanut butter Ц kind of worked. We tried ice cube Ц did not work. We then tried oily lotion Ц worked pretty good.

Fest Quest is an annual event that our parish has. This is the first year that I have been able to volunteer for some of it. Also the first year that I tried to bid on something at the silent auction. I need to learn how to be better at that auction stuff. I did not get one thing! All I really wanted was the Lawrence Welk basket for Tim. But I was not paying attention to making sure I knew the timing of events and making sure that I built in enough leeway to make sure I did not miss anything. But I did get a kiddie keyboard from the kid prize table thanks to a very competitive young lady who was with us. Her family came in from out of town to spend the day with us and we naturally took them to Fest Quest to have a good time. They had limo rides and bounce houses and lots of games.

The field trip was to ValaТs Pumpkin Patch. I think that is a very nice place. Very well kept up and very well built and very big. I drove and had Ardena and one other kid from her class with us. On the way home the girls were talking about their plans to be nuns and that they would like to be nuns at ValaТs Pumpkin Patch. Their other plan was to be kindergartners or first graders or second graders for the rest of their lives so they could go to ValaТs every year for the rest of their lives.

Please pray for Liam Kane and his family. Their web site is at www.liamjameskane.com
Liam has the same cancer as Jessica and his family is now facing the same tremendously sad journey that we faced before Jessica went to heaven. The words, "tremedously sad" do not even come close to describing it, but in reality it's an indescribable situation.

We have some other Memorials for Jessica to mention and give thanks for. Some friends of our purchased Gideon Bibles in memory of Jessica. Some other friends purchased hymnals for the new Diocesan Center.

My sister and I talked about how for some reason recently weТve been thinking more about Jessica. The tears are coming easier now for some reason. But IТve noticed too that the sadness isnТt as sharp Ц thatТs not quite the best way to describe it. The tears come easily, but itТs not a total break down. IТm sad, but I donТt feel like IТm dying over and over again. IТve been remembering the really fun times a lot. Five years ago I was just pregnant with Jessica. Two years ago was when Jessica and Ardena and I were having a ball going to pumpkin patches and apple orchards. Jessica was old enough and mobile enough to really have a ball. Ardena loved it when Jessica and I would visit her classroom. I have fond memories about attending УWestern DaysФ at the library and listening to some great stories and serving the kids Уwell waterФ Ц because thatТs what cowboys drank. I recall thinking how neat it would be for Jessica to have a big sister at school when she started preschool. My heart was full of joy seeing the power of their sisterhood and thinking about how that would grow in the years to come.

IТm still volunteering at ArdenaТs school. Still leading the music for Mass. I need to remember to breath better. I remember in high school that I fainted one time because I forgot to breath when singing. IТve added repair of library books to my schedule. If any of you have a chance or time to volunteer at a school, do. These young people have such beautiful energy. I just love it that they view me as someone they can run to when they have hurt feelings. УMrs. Hindman, (tears) they are making fun of me for eating my boogers!Ф Me: УYouТre feelings are really hurt arenТt they? (nod) My feelings were hurt too when I used to eat my boogers. (crying stops Ц they are stunned that I used to eat boogers). Them: (In disgust and surprise) УYou used to eat boogers?Ф Me: УYep, until someone made fun of meФ. УItТs not nice to make fun of people, but sometimes we can stop doing gross things to avoid being made fun of.Ф End of tears. On with the day.

The Great Pumpkin Run was fantastic. One thousand five hundred and fifty kids attended. They divided the groups up by grade. Usually 200 ran at once. But they combined the kindergartners and the first grade AND required a parent to run with them. So there were 800 bodies running that one. The announcer said that if your little one falls down, Уpick Сem up, dust Сem off, and keeping Сem going.Ф Kind of sounds like a good way to approach every day.

Thank you to all who continue to sign the guest book. It does my heart good to hear from you. I'm still working on sending thank you notes. Please forgive me for taking so long.

Toni

Monday, September 26, 2005 2:05 PM CDT

Hello All,

We are keeping busy.

Went to family camp. That was part of the making new memories plan to help us move forward. It was really fun. Ardena loved the horses. Actually, she looked like she was born to be in a saddle. Singing around the campfire was really fun! Ardena even tried some - I don't even know what to call it - other than what it's called "spaghetti ropes". They have this activity where you climb 25 feet or so up a tree and walk across a rope that is tied to another tree. You have safety equipment on - the kind that rock climbers have - and you are connected with a safety rope to a person on the ground who will help you come down if you happen to fall. Ardena made it half way up the tree before the panic got too much and then she pushed off and let them bring her down. I wanted to try, but I had this image in my mind of me falling off the rope and then my weight slinging the poor helper into the trees. We went out on a canoe and ended up tipping over in the middle of the lake. We were good and worn out by the end of camp - correction, Tim and I were worn out and feeling like fossils. Ardena does not seem to ever wear out.

Tim is keeping busy too. Recorded a Johnny Cash song for a CD at his work. Got the trim up for the window in the kitchen. It looks really nice Ц like itТs always been there. Reviewing a book a friend of his is writing. Got a new guitar called a backpacker model. Looking for a banjo Ц wants to learn how. Working on a cookbook.

Ardena is in school and is now learning to play piano. Loves school. Loves to sing. IТm thankful for her teacher. WeТve still been riding our bikes all over town. Hoping to make it on some trails that head East. With the weather cooler, it will be nice riding. Ardena is having some obedience issues. IТm sure all seven-year-olds do. But I wonder if hers have a lot to do with the many months of her parents being worn out or gone and her having high entertainment while hanging out with other families. Also this summer, I was here physically, but very distracted emotionally, so I didnТt get on her about things like I should have. So we all have some adjusting to do. She really needed the high entertainment when she had it to help her deal with the extreme uproar and fear in our lives. But now we are all needing to be a family and needing to do the parenting that we need to do. So now she is getting in trouble more and having to deal with the consequences. Also, she seems so bored with just Tim and I. It's better on days when we can go for bike rides.

IТm busy. Good thing we donТt know what God has in store for us. We would either be too paralyzed in fear or we would be laughing at Him in disbelief or fighting and kicking the whole way. IТve been leading the music for the school services. A CAPELLA! IТm still wondering what made me think I could do that. Well, I guess IТm doing o.k. at it. Made a lot of mistakes (still making them), but no one has fired me yet. Somehow God takes our miniscule efforts and turns them into something more. IТve also been taking care of some young tots. Six or seven of them at once Ц ages three months to five years! A friend of a friend needs some coverage while she runs to appointments Ц so there I am with all these kids. Also, been trying to help our lawn recover from two years of neglect. A friendly worker guided me to some hearty variety. Then I went back for more and another worker told me Ц oh you donТt want that seed for a lawn, thatТs pasture grass. Well, if itТs pasture grass than why is it named УFawnФ Ц that sounds real similar to УlawnФ to me. What are they selling pasture grass in the middle of Lincoln for anyway? So, we will have some interesting looking lawn next year. Maybe it will attract some cows. IТm hoping that the second worker is just extra finicky about lawns. The squirrels are eating our tomatoes! Yes, taking them up the tree and eating them! The squirrels are also chewing on our picnic table and JessicaТs play set. I think they are even eating the mufflers off the vehicles.

Nothing much else to write about. We are just doing our thing or still trying to find it.

Thanks for checking in on us. God Bless You.

Thursday, August 25, 2005 10:13 PM CDT

Hello to all. I hope you are doing well.

The grief workers tell us that the УfirstsФ will hit us hard. First birthday without her, first Halloween, first family reunionЕЕ. BUT, you never know how that feels until youТve been through it. And even if you think you are prepared Ц it still can hit harder than you imagined. At times it literally feels like a fence post is being driven through my heart. What really gets me crying rivers is remembering her beauty and her energy and her joy and her wonderful mind and her funny bone. I loved being her mommy.

One thing that continues to strike and puzzle me is the extreme opposite emotions over the same thing. Something happens and I start out feeling happy about it and then the next instant mad or sad about it and then feeling something else and then feeling so mixed up about it that itТs mind boggling. Then there are other things that make me feel really big and valuable and then I feel like a speck and insignificant. IТm sure itТs hard to be around me most of the time when IТm in the middle of this kind of thing. IТm so thankful that Tim and my family are as patient as they can be with me. ThatТs the thing about family. They get to see each other during the best of times, but they also get to see each other at the weakest moments. I pray that I can be as loving and patient and forgiving as my family has been toward me.

Also, I traveled down a more painful path the past month. I started contemplating the purpose of JessicaТs death. I know that previously I stated that doing so could make us go crazy Ц but I think I was worn down from sadness and I started wondering if God was preparing us for something. This line of thought threw me into a panic wondering what horrible situation are we being prepared for? I felt so scared that I felt paralyzed by considering the possibility. IТm sure you can see how it would be hard to face each day if this thought process had a hold of your brain. ItТs just too much to have that kind of pain and fear all of the time. I can really understand how someone could die from a broken heart or being scared to death. ItТs very painful.

I had to make myself get out of it somehow. How did I do that? With lots of prayer and help. I reminded myself that we cannot guess on GodТs purpose. And I also talked with some friends. A friend pointed out that this is Earth Ц not Heaven or Eden. God wanted us to have Eden. But we all know how that turned out. This is an imperfect world. We live with disease and death and things gone wrong. God is sad for our suffering and for JessicaТs too. We need to turn to GodТs love to help us get through. I knew these things already, but a mind tends too loose site of this when something has a hold of it that keeps you scared beyond sense.

Another friend pointed out that we are all in this for the long haul. Meaning we are all in this for our whole life. We just have to do the best with what comes, the highs and the lows, because things will keep coming our way and we need to keep moving on and living our life. Another thing this friend pointed out is that routine is healthy. Right now, we donТt really have a routine because school is out. So, I need to look for things to keep busy. I knew that already, but with school out, there are just times when nothing is planned for the day. Finding a new book to read. Finding something else to focus on.

So Ц business, routine, focusing forward, focusing on the beauty that is still here, seeking strength and comfort, keeping the faith. I try to keep busy and borrow other peopleТs kids so that Ardena and I are very busy and occupied. That helps a lot and is very fun. Kids get really silly when they are together.

The past couple of weeks has been better. Keeping up with Ardena sure keeps me busy. Trying to keep up, that is. She is learning to ride her bike without training wheels. She was very frustrated at first but just kept with it. It is interesting how the skill needs to be broken down. Her first leg of success was when we finally realized that she needed to learn how to keep an eye on the road ahead of her --- NOT STRAIGHT DOWN IN FRONT OF HER WHEELS. Then she needed to get it that she needed to use her brakes when she was feeling like she was going too fast --- INSTEAD OF SCREAMING WITH HER LEGS AND ARMS STRAIGHT OUT UNTIL SHE RAN INTO SOMETHING. Then she needed to learn how to brake and then put her foot down on the ground to hold her bike up --- INSTEAD OF TRYING TO BALANCE THE BIKE WITH BOTH FEET ON THE PEDDALS AT A COMPLETE STOP. Now we are riding all over the place. We are both having a good time trying the different bike path routes. I do wish there was a product like a dear whistle, but that we could put on our kidТs bikes to help them not run into cars or vise versa. OH, I guess there is a product like that Ц itТs called a Mom who goes riding all over town with their child calling out commands and warnings the whole time. I love being ArdenaТs mom.

We have also been busy working with calves to show at a fair. I am so thankful for this family who has invited us to be busy with them. Ardena has her own halter from the last time she showed a calf. It brings back fond memories of working with the 4-H calves when I was growing up. Mom and Dad sure put a lot of work into helping us kids have things to do and places to go: Calves, mini bikes, canoes, camping trips, ski trips, sportsЕ.. Good thing I didnТt forget much. It takes a unique skill and strength to keep your cool when leading a calf and have it resist and having to put your hand right in the poop on itТs tail to make it move.

We really enjoyed the fair. Wonderful Polka Music Ц brings back wonderful memories of when Tim and I got married. Ardena did very well showing the calf. She is getting much better at handling the animal and being more calm. She also is getting more confidence in talking to the judges. She is very proud of her blue ribbon.

Ardena and I headed out West a few days ago. About an hour out we got the idea to borrow Cousin Emily and take her with us. Emily was so excited about going somewhere with Ardena, but IТm not sure she realized that she would be going without her mom and dad. But she did great. And the girls had a great time and Grandma Jeanne and Grandpa Bruce had a great time seeing their Grand Girls. I just love taking kids to the farm. They can have fun and walk the road without worry about getting run over. They can get messy beyond belief and itТs o.k. They sure get worn out with all that there is to do. They get to learn all kinds of cool things like that frogs pee when you pick them up and that crickets have soft bodies. Stepping on stickers really hurts. ItТs not a good idea to drop a water melon. The girls think itТs quite funny that a horse tried to bite my little toe off. That horse actually got a little nibble and it hurt a little too much for my comfort. I should have known better that to let the horse get that close to my toes. But the good thing is that the girls are now true believers that a horseТs mouth is nothing to be too relaxed around.

Looking forward: Summer went by too fast. There are many play dates and swim dates and coffee dates and other things that we wanted to do that we didnТt get to do. School starts in a few days for Ardena. IТll have to figure out what to do with my time. I have some house projects that need to be done. Also planning to do substitute teaching. Some volunteer work. Possibly some classes. Who knows Ц I have to find my thing. Tim keeps busy doing his thing. If you have a thing, be glad that you have it.

More thank yous go out to those who responded to Ardena's birthday. She recieved mail from England, Costa Rica, and Afghanistan! Ardena also received in the mail a certificate that states that she is the adoptive parent of a butterfly at the Children's Zoo.

We were touched deeply by those who remembered Jessica's Birthday and who sent cards and messages. Also, purple balloons on our porch were just beautiful. Jessica's favorite color is purple.

Thank yous to many who have been donating in Loving Memory of Jessica. We have received notice about donations to St. JudeТs, Make A Wish, Relay For Life, American Cancer Society, Tabitha Hospice, World Pulse.

Tim and I have decided on a couple of things for Jessica's Memorial. We are establishing a fund at the school in JessicaТs memory. IТm not sure what to call the fund, but we have the starter money there. We are working to get the details worked out. Jessica was so excited about going to school this year and Ardena and Jessica were so excited that both of them would be in the same school and get to see each other at school. That would have been so beautiful. We are also providing some equipment to the school and hope to contribute to the play area where our MOMS group meets. We are also donating to the Folsom Children's Zoo. In the future you will find a brick in the path to the Butterfly Pavilion and a bench, both in memory of Jessica. Thank you to all of you who helped us to make these memorials.

Thanks for checking in on us. God Bless You.

Toni

Monday, July 25, 2005 8:05 AM CDT

Happy Birthday Angel Jessica!

Monday, July 11, 2005 10:16 PM CDT

This grief thing is still hard. I think it will always be hard. The lethargy and the concentration issues are starting to get better. But when I donТt have anything planned, itТs just easy to just let the day go by and not really do anything. So, I just need to at least try to schedule one thing out of the house each day. If I donТt, things just go stagnant. If I do, then it usually leads to doing other things Ц so that is good.

I tried to find some books on grief and was feeling disappointed. Most grief studies have been done on death of parents or spouse. OR I was finding books that seemed helpful for the first few chapters, but then the author got off onto a tangent that was not helpful to me and I considered their credibility to be questionable. Then I found a book written by a woman who usually writes for scientific journals. She interviewed many parents who had lost children and told their stories. Some of them made it through o.k. and many had gotten stuck in destructive patterns related to the loss. She also had lost her only soon to an accident when he was in his late teens. After all, the best experts are those who have been through it. A friendТs sister sent me a book that really helped put things into perspective. The book was written by a woman who had five children. Their oldest daughter was dying of cancer at age 17. While she and her husband were out getting a couple hours break from the demands of all the care giving, someone broke into their home trying to steal guns and shot to death all of their other children. Ages 18 months to 14 years. Then their oldest daughter died eighteen days later. Another friend brought over some books that she hoped was helpful. She had just lost her sister from an accidental overdose she had received during a hospitalization to recover from cancer treatment side effects.

Here are some books that I have found helpful in my situation: When Your Child Dies by Theresa M. Huntley, After the Death of a Child/Living with Loss Through The Years by Ann K Finkbeiner, Goodbyes Are Not Forever by Joy Swift.

I guess this is what I learned from those books so far about loosing a child/children:

The pain never goes away completely and it can feel just as strong at times several years later.
The way to make it is to find a purpose to distract you.
The last book I read talked about still having a relationship with memories with the one lost, but to emotionally relocate the deceased person.
There is a need to deliberately avoid dwelling on certain memories Ц itТs just too much to have that constant deep pain.
We will never find an answer as to WHY? Ц other than the basic fact that they had something happen that killed them.
We will never find an answer as to the PURPOSE of it.
Life is not predictable and when you loose a child this reality is just in your face. It shatters all that you thought you knew and it shatters your sense of safety. It also shatters the sense of power to protect our children. Conceiving and giving birth felt so powerful and taking care of a baby and helping them grow and loving them felt so wonderful. It felt so powerful to help them live. But having your child die no matter what is tried is the ultimate powerlessness.
Everyone has their own style of grief and their own time frame.
ItТs common to have mixed emotions about a lot of things.
What many of the parents talked about was it being hard to be around their own family members because it triggered such painful emotions. Or, because they just did not have the energy to face the other emotionally draining dynamics that every family can have. No wonder the divorce rate is high in these families. But think about other family members -- Some parents told about disconnecting from their spouse, their other children, from their parents, and from their siblings. They needed isolation and distraction. The constant pain was too much and they needed someway to get a break from it. They did not find support in their own family because the whole family was in too much pain to really help each other. The other emotionally draining dynamics were just too much to deal with. AND they were really in no shape to help each other. They are all devastated and feel broken and all have their own healing to do. I suppose it would be like two people with broken legs trying to help each other up a flight of stairs. They will most likely get hurt doing that, so they should just get help from somewhere else.

Some parents report not really paying attention to their other children for years. Others report feeling over protected and becoming over involved. Then the grandparent factor is difficult too. Often the parents of the parent who lost the child is just wanting their own child to not be in so much pain that they want to dismiss and Уput awayФ the pain of their own child or think there are ways to a quick fix. Other grandparents become obsessed with the other grandchildren or donТt respect boundaries of their childrenТs families.

Children do experience the grief different from adults and when they see adults cry, they might tend to think the adult cannot handle the emotion and then the children might try to hide their own grief. Young children who have lost a young sibling do not have that child innocence anymore that Mommy and Daddy can take care of everything and keep you safe from all harm.

I wonder why these support groups seem to help Ц if all are in too much pain. I think it must be because the pain that each person in the support group is feeling is not from loosing the same person at the same exact time. The support groups will have people at different stages beyond the loss. So you have people who you can seek help from who have gone before you and then you can turn around and help people once youТve been out there for a while.

Also, the topic of the death of a child is considered somewhat taboo in this country Ц because people who have not been through it just donТt know what to say and feel quite uncomfortable. Many friendships are lost after the death of a child because friends just feel so uncomfortable seeing the parents in such pain and are woken up to their own children being vulnerable too. Also, people have the tendency to want to find blame so that the loss makes sense to them and then they feel safer. ItТs quite a wake up call to learn that there is no one to blame here. Bad things happen to good people, no one to blame, and thatТs just it.

For some people this kind of experience changes them profoundly Ц gives them a sense of different priorities. Some people just canТt put up with a lot of what they used to put up with. They say that canТt deal with crap anymore. Some people just become more of the way they always were. Some people feel that they have are closer to certain family members and friends. I suppose that one person can actually have all this happen to them depending on the different roles they perform with the different people that they know.

Different cultures have different grief responses to children dying. In our county the mortality rate for children under 5 years old is relatively low. Some countries have a mortality rate for children under 5 years old of 50 These people grow up with the reality that babies and young children die. Some countries have the children carry the wrapped dead baby to the cemetery! During the Black Plague, they made up nursery rhyme songs about death and dying. No matter what we did, Jessica was going to die. But, there are millions of children who would be alive if they had just simple food and water. It just makes me realize that children die all over the world for many reasons. This knowledge doesnТt really lesson my pain, but it makes me know that I have to learn how to face this and go through it the best that I can. IТm not sure how to Уemotionally relocate the deceasedФ. I guess itТs because I havenТt had that much time go by yet. Maybe what it means is to focus on other things. I guess IТm trying to do that.

And, this is what really scares me, these books say that with the death of a child, the pain tends to get worse. People report the second and third year to be worse at times that the first year. I have a hard time imagining this. It feels pretty bad already.

FOCUS ON OTHER THINGS:

We have this silly bunny that has decided to hang around our house. I see it every day trying to play invisible in the grass. This bunny has eaten off all the green beans that Ardena and the neighbor kids planted. I think IТll just have them plant more beans for the bunny to eat.

I know two families who are having twins, so IТm hoping to help out.

We enjoyed a few 4th of July Celebrations. Nice to watch the kids have a blast.

We are trying to keep up with the summer reading program Ц are behind already because I did not understand the program Ц but we will still do our best.

Also, trying to do the pool thing. Ardena just loves it.

Wanting to get back into the MOMS group schedule.

Will be doing swim lessons soon.

PRAYER REQUESTS:

For the family of Addie in Hastings. I have not met the family, but know some people who know them and have learned that they are now adjusting to life without Addie.

For DillonТs family in York. Dillon has relapsed and is now going through treatments again. I talked with his mom the other day. She recognized me from meeting me once at the hospital.

For SylarТs family. He is still not in remission and has the same cancer as Jessica. The plan is for him to have a bone marrow transplant soon. That is a very extreme procedure and I pray for strength for all of them.

For the family of a young woman who is continuing a relationship with a young man who is abusive and controlling. I pray that this young woman will get strength and will know her true worth and will get out of this relationship and will set good standards for the company she keeps. I pray for peace for her parents who are worried for their daughterТs safety and happiness.

For BrookeТs family as they are in treatment again with a third relapse.

For MollyТs family and Molly that she continue in good health and remission.

God Bless You,

Toni

Monday, July 4, 2005 10:08 PM CDT

Happy Independence Day!

Thank you to EVERY ONE who sent Ardena birthday wishes. She was quite surprised! She said, УThis is an awful lot of cards for one lady.Ф Seems she got a card from nearly every State. A lot from Colorado and Missouri.

Last year at this time we were all watching the fireworks from the windows at Children's Hospital. It seemed that someone was setting off HUGE bursts just for the kids at ChildrenТs. The bursts were so big that the entire windows were filled and more. The floors shook. We had just met another family with the same cancer that Jessica had. Both their son and Jessica had similar funny bones too.

Jessica,

Mommy and Daddy and Your Sissy really miss you and hope you are enjoying the fireworks with us this year from the best view ever. I miss your amazement and your excitement and your putting the world together. I miss you being you. I'm sorry that you see me cry a lot. I miss your beauty. Oh God, I miss you. You were really great at being a kid. I'm so glad that you were in our family. I'm so glad that God gave you to our family.

I love you,

Mommy

Saturday, June 25, 2005 6:50 AM CDT

Hi All,

Ardena's birthday is in a few days. The last few years have been real, real low key for her birthday and she has felt a bit left out with all the focus on Jessica. I was hoping that you all could help make this year special for Ardena by sending her birthday cards.

I got this idea from reading Haley's website and her mom, Patti, requesting a card shower for Haley. Such a wonderful and loving idea.

We went to Haley's funeral yesterday. I was taken by suprise by how hard it was for me. It felt so strange to feel my arms and legs feel shakey and literally shaking while trying to walk in. I hugged Patti and she said the most perfect thing. "This really sucks." We are going through this the best that we can, but YES - it really sucks.

God Bless You,

Toni

Thursday, June 16, 2005 7:26 AM CDT

This week has been hard. One morning I just cried and cried. DidnТt want to get up. I have to though. I have a 6 almost 7 year old who is counting on me. I have a husband who is counting on me.

Some days are easier than others. But even then, the pain is real and the pain is huge. The grief comes in like lightening sometimes and it feels like my tears squirt straight out of my eyes. Jessica was so beautiful, so wonderful, so alive, so much beautiful energy, such a beautiful spirit. I want so much want to count on all the beauty that is still here. But, I know Ц I really know Ц that these could be gone too. Thank God for every moment.

I went to a talk last Saturday morning about gardening and how gardening can be such a spiritual experience. The care that we put into tilling the soil, choosing the plants, helping the soil be just right for the plants, pulling the weeds. The speaker connected the care and tending of a garden to the care and tending that mothers and parents do in raising their children. We put so much care into our garden to make it a beautiful place. That is like the care that we put into our children to help them grow to be beautiful people. Parents are gardeners of their childrenТs souls. I dwelled on that concept a lot. Come to think of it, our marriages and our friendships are УgardensФ too. I think of how if we took care to chose our plants and fertilizer well and get rid of the weeds, that we would have better success in keeping these beautiful. And a storm can come through and destroy the beautiful plants in our garden. What then. We are left to rely on the beauty of our own souls, to rely on our faith, to rely on the beauty that is still around us.

We helped some friends celebrate their wedding on Saturday. The groomТs cake was neat. There was playing cards decorating the top corner, then the words, УPraying for a Full HouseФ, then there were several babies decorating the bottom corner.

We also helped some friends celebrate college graduation. Their daughter and son go to school with Ardena and Tim used to work with these kidТs dad. The kidТs mom had just graduated.

I am glad that we can celebrate these events with these friends and their families. We need to balance our lives with happy events. Making new memories and moving forward.

Still, looking back is painful, but I know itТs part of the healing. Looking forward is painful too, because the future that we thought we had has been severely altered.

I think a lot about how we approached the last weeks of JessicaТ life. We got involved with Hospice probably sooner than most families would have. I just felt that these folks were the best trained to help us make this journey. They are trained to know how to deal with pain and comfort and quality, but also how to help all involved make the spiritual journey and to say good bye. They also are still involved with our grief work. Still it was a hard journey to make. Still is. But I think they helped us with many struggles that most medical professionals would not be skilled at. Not because they are not well trained, but they are trained for a different focus. They are trained for treatment and cures and I would think it awkward for them to continue to be involved when treatments have failed and when cure is not attainable with the medical tools that they have.

One of my biggest struggles was how to determine that we were not neglecting Jessica by not treating her cancer. We knew that she was not going to survive, but we didnТt want to neglect her. On the other side of that issue is wondering if doing a certain treatment is helpful or just a form of medical torture - especially since there are serious side effects to these cancer treatments. The pain, the nausea, the kidney damage, the isolation in the hospital, the uproar of travel and clinic visits for transfusions. We had to consider how all of these affected her well being and her quality of life. A transfusion might bring up her hemoglobin, but could overload her kidneys or cause a bad reaction and takes up hours of precious time that she could be spending being a kid and being with the people who she loves. An antibiotic might help an infection but could set of a bowel problem that would cause her more damage. AND we saw all of this kind of reaction when she was receiving cancer treatment Ц so we knew it was true. Even her feeding tube became a source of problem because her digestive system could not handle it anymore. Also, it was causing her to bleed and vomit. It was horrible to see all of her systems shutting down and knowing that we could not do anything that would really help her. I was just so thankful that we had the hospice team to help us manage her pain and keep her comfortable in the end.

I also struggled with wondering if we were giving up, wondering if we hung in there for a bit longer if it would change the outcome. Nope. We didnТt want Ardena or Jessica to feel that all were just giving up. We had to focus on the simple explanation that even when everything known to help is tried, sometimes things just donТt work. And the body just wears out from the spread of the illness and stops working. It is so hard to accept this kind of reality. But itТs real. I think that by accepting the reality, it allowed us to focus on the things that we could still do to help our whole family make the journey as tenderly as possible.

Still, it was hard. Still is. For fourteen months we were thrown into a world of medical complexity. We had to become skilled at medical treatments and cares that we had never heard of before. We were sleep deprived and emotionally shell shocked. Medicines around the clock. Giving shots. Giving I.V. meds. Urgent travel. Watching for even a slight fever. Coaching a child to learn to tolerate pain and tolerate procedures that were scary for her. Ardena being taken care of by friends and relatives when Tim was at work. Our lives turned upside down to try to save our little girl. So, no wonder itТs difficult to then change gears and stop treatment and focus on Ц what?. WHAT! I was so afraid that we would be doing nothing for her. But the hospice team assured that we were still doing lots for her and for our whole family. They helped us see how the decisions we were making, the events in our home, the activities that we did were all helping control her pain and making her last weeks as high of quality as possible.

The hospice team was there also to help us emotionally. Helped us focus on ArdenaТs needs as well as our needs. We decided to keep her at home because we knew that home is where she was happy. Also it was because we felt that it was more emotionally healthy for Ardena. We just felt that Ardena would adjust to all of this better if she got to see her sister as much as possible, to see her decline, to be part of it, so that we could guide her through this. I kept thinking that the emotional trauma to Ardena would be greater if we were to have Jessica in a hospital Ц where she is supposed to be getting better Ц and then to all of a sudden have Jessica gone and the next time Ardena would see her is in a casket. We explained everything so that Ardena would know what to expect. How to tell when Jessica died, what we would do next, who we would call, who would come to the house, who would take JessicaТs body, where they took her, what they would do with her body, what the events in the next few days would be. We had Ardena with us to choose the coffin and other preparations. We had to focus on simple and basic explanations. That was good for us too.

The hospice team had suggested that for the day of the funeral, we have Ardena a Уfuneral buddyФ. Someone who could spend time with Ardena when Tim and I were busy talking with other adults. At the time, the idea seemed odd to us. We still felt it best for Ardena to be with us. But now I can see the need for such a buddy. When we saw all our family and friends and the reality of all of what was happening hit us that day, we were so consumed with our own grief and talk, that we would have not been able to focus on Ardena at the level that she needs. I think it would have been traumatizing for her to see or hear all that we were going through. It worked out beautifully on that day. JessicaТs godparents arrived to the house a few hours before the funeral. We were running behind on a few things. I had wanted to give Ardena a special focus and have her hair put up with the floral wreath that we had made for both Jessica and Ardena. I donТt know doing hair that well, so had planned to take her to a beauty shop. Since we were running behind, JessicaТs godmother offered to take Ardena and her own daughter to the beauty shop. Then the shop took longer that we thought. It was prom weekend, so the beauticians were giving both girls the prom treatment. They were running late, so would just meet us at the church. So then it fell into place that Ardena had her funeral buddy. Actually, she had a whole family for her funeral buddy. It worked out so well and I am so thankful for this family.

This has been a very hard journal entry for me to post. I've been crying during the whole thing. I'll need to balance this with focus on some other tasks for a while.

I need to focus on things that I am thankful for. There is so much beauty here. Some of what helps me is thinking about all the support that we had from friends and family and strangers.

God Bless You All.

Toni

Sunday, June 5, 2005 10:34 PM CDT

We got to TimТs parents and stayed a few days. I got the lawn mowing bug in me and started mowing lawn. It looked like a hay field around the house. All the rain has everything looking so green and growing so well. Thank God for RAIN!!!!

We noticed that the mower seemed to double as a tiller in places, so Delmer decided to take a look and found an impressive bend in one of the blades. HMMMM. Folks, if you ever have a chance to follow an old farmer around and watch him go about fixing things, take advantage of the opportunity. My idea to fix it was to drive 30 miles one way, buy a new blade and drive 30 miles back. Who knows what it would have cost. Delmer knew how to drop the whole platform off of the riding lawn mower, release belts, remove pins and bolts and screws and springs and levers and blades. Then he knew how to torch the thing and make it straight and then sharpen both blades. Then put the thing all back together again. I was blessed with the fact that he couldnТt get around too well and needed my assistance. So I got to have his brain telling my fingers what to do. I even got to roll around in the dirt on my belly and then when I sat up I found that I was sitting in a dried up cow pie. I felt like a real farmer. We felt quite pleased with the job that we did. AND it worked. So I mowed as much as I could that day.

We were trying to get back home to celebrate with Tim for his birthday. We followed the storms East about half way and then decided we had better wait it out, as the front turned tornadic and flash floodic. We stayed at Grandma JeanneТs and Grandpa BruceТs again. This time Cousin Emily was there. The girls had a blast playing dress up with GrandmaТs slips. They went outside to play in the slips and before we knew it we saw that they had walked down the road to the next farmhouse in nothing but their slips and flip flops. Two black slips and a black dog.

We are back home now. Our plans for this week are to go to Vacation Bible School. We know a mom with a new baby and two other little kids, so IТm hoping we can help her out some. We are also having a guest over for supper. We made Blueberry Salad AGAIN. Also planning to make homemade butter and homemade lemonade. Don't know for sure what else, but I'm sure it will be just fine. We have a couple of weddings coming up. So, we will be doing our things and keeping busy.

Thanks for checking in on us. Please continue to pray for all families going through tough times. Remember to offer a prayer of thanks for God's many blessings.

God Bless You,

Toni

Thursday, June 2, 2005 11:05 AM CDT

We are all doing o.k.

Doing what we think is healthy in this grief process.

Even if I don't necessarily feel like doing something - I do it anyway since I figure it must be good for me. Must be good for us.

Making new memories. Healing so that we can grow and laugh and trust and care and love. At least I think that is a list of healthy goals.

We had supper last Friday with other parents who have been through the same thing. It was very good to be able to talk and just know that they knew what we were talking about. We laughed at thinking if anyone was listening in on us they would think we were crazy. It was neat how all of us had thoughts about the events leading up to our child's death. What struck us was how they said good bye like they knew their passing was coming soon and that they were not afraid.

We went to a graduation reception for Tim's cousins son. Felt good to visit there. Nice to celebrate achievements with them.

Then Ardena and I got a funny idea that we could go out west for at least a night. I wasn't feeling like it was in my heart to travel - but then I thought - "Well, maybe for just a night." Now that has turned into, "Well, maybe another night." Then that turned into, "Well, maybe another night and then we will travel a bit further."

It's been good. One day we hiked with our cousins 1.5 miles up into the hills to find a canyon. We imagined it was probably a place where the Indians used to use to round up buffalo or wild horses. I was holding my breath when Ardena and Elkana climbed up the canyon wall. They woke up an owl from it's den that was in the side of the canyon wall. We think it was a barn owl. That was breathtaking to see the owl flying. We got a picture of it in flight. I think we were more impressed with the owl than the owl was with us.

Then we had visitors on horseback who came to see who Cousin Kim was trying to do in. I was nearly barefoot - as I only packed for a night and only brought my sandles. I can only imagine what was going through their minds to see me in that kind of footwear. After all, the Woman's World Rodeo Champion would know what you should and should not wear in a cow pasture. She did not give me too much heck about it, probably figured IТd learn my lesson on my own. At least I did have the sense to get Ardena a pair of cowboy boots for the hike.

The next day we got the idea to walk in the river. Well, I learned from my footwear failings in the pasture. I now own a pair of irrigating boots! There is nothing like owning a pair of irrigating boots to make you feel real smart. We walked through prickly pear patches and scum and moss and saw blood suckers and minnows and wild turkeys.

We visited the Petrified Wood Museum. That was very spectacular. These two twin brothers (H&H Kenfield) started looking for arrowheads in the river, but usually found petrified wood. Well the rings can be taken apart so that a person has a bunch of petrified stick like pieces. They decided to make art with them. WOW! These are really neat pieces of art. I would guess that you would not find anything like it anywhere else in the world.

Ardena now has this traveling thing in her blood. She is picking places where she would like to go next. Hmmm. Tim says he is doing fine and can fend for himself.

I think all the time about Jessica. I am so thankful that we got to know and to love her. She told Tim often that she was glad that God gave her to the right family and gave her to right Daddy. She told me often that she was glad that I was her Mommy and that she was glad that she was my girl. She was such a young child and to think that she had those thoughts and that she thought to tell us how she felt like that. I pray that all children could feel like that.

I think often about her dream about Jesus smelling like cookies and her not being afraid. Another mother with a son who faced the same situation that Jessica faced wrote about when her son started crying tears of joy on the Fourth of July when he saw the neighbor kids across the street lighting roman candles. He told his mom, УThat is what it is like when star angels go to heaven.Ф ItТs like God have these kids this insight so that they would not be afraid.

Ardena made a tribute to Jessica on our front porch with flowers and wrote in a note book a song from church for her:

Words:

Do not be afraid.
I am with you.
I have called you each by name.
Come and follow me.
I will bring you home.
I love you and you are mine.

So, that's what we are up to.

Thank you for checking in on us. Please send prayers of strength and love to all families who are going through tough times. Please pray that they go forward with GodТs loving guidance. Brooke has relapsed and she and her family are facing a very hard time ahead. Haley and her family are still facing very hard times and staying strong. Mike is going forward and doing something very lovely in memory of his daughter, Schuyler. He is holding a birthday party for her and donating the gifts to the mission. Mona has found that her child has Kawasaki Disease and they need prayers that the treatment will prevent organ damage. We know another couple who is adopting a young child whoТs parents do not have the skills necessary to raise him safely. Please pray that the adoption process goes smoothly.

God Bless You,

Toni

Tuesday, May 17, 2005 9:38 PM CDT

Last week was a wake up call to realizing what IТm waking up to. I have a nearly seven year old and I have no experience being Mommy to a seven year old who now has no sibling to play with. In my mind, she was still a 5.5 year old who had a sibling to play with. I have a husband, whom I still feel is the most decent man that I know, BUT it feels like we are out of sync. We have basically been apart for 14 months and we have changed. How could we not have changed going through something like this? So, we have some adjusting to do. Of course we knew that, but itТs more than adjusting to life without Jessica, we are also adjusting to life of being a family with people who we need to get to know again.

School will be out soon and IТll have to be on top of things for Ardena to do. IТd bring her home from school last week and she was just SO BORED Ц she told me many times. IТm thankful that Cousin Lois sent Ardena some books that are fantastic. They are just exactly the kind of adventure she likes and just at her level. She wants to collect the whole series. She has a lot of her Dad in her. Books, books, books. This gift is such a blessing. It might seems like just books to most folks, but to me it was a great help in realizing what is going on in the mind of a seven year old. They want to read! They want adventure! They want to spend time with their parents, but want to be independent. Well, I was so pleasantly surprised that she could go to Barnes and Noble with me and we could both sit a read and enjoy that kind of time together while have coffee (me) and ice water (she).

I still need to learn how to talk the gourmet coffee shop vernacular Ц but I can get my point across. Who needs words like УlatteФ Ц whatever Ц whatever - when you can tell them to make something with lots of milk, that is sweat, and has lots of caramel. Another great way to get it across would be to tell them to make a caramel sunday with coffee ice cream and then heat it up in a cup.

Lincoln has great reading programs in their public libraries, so I will go today and get signed up. Lincoln libraries also have wonderful activities all the time Ц IТm thankful for that. Also signed up for two weeks of swim lessons. Plan to sign up for a one day grief camp at the ZOO. Hoping to sign up for a three day family camp (not grief related)- would be fun to canoe and ride horses and sleep in a cabin. Actually, everything will be grief related - even if it is not planned that way. There has got to be healing value in making new good memories as we are adjusting to life without Jessica living with us. I'm not read up on this grief thing - so we are mostly doing what feels right in our hearts. When I feel stranded with it, I know I can call the grief coordinator and get some guidance with whatever issue I am struggling with.

Yesterday was a big deal when I asked her if she would like to help prepare the fresh strawberries for a cook out. She felt real proud that she could use a sharp knife. She did a great job. So, we will do more things like that. Cooking, sewing simple things, plant a garden.

Another thing IТm still struggling with is a short attention span. The Grief Coordinator at Tabitha explains that it is quite normal for this to happen. Especially to the person who was the main caregiver. IТve been so intensely focused on caring for JessicaТs complex and demanding medical needs that I didnТt focus on much else. Now that IТm trying to focus on these other things, my thought process is interrupted with thoughts and grief over JessicaТs passing. I was determined to make myself cook hamburger yesterday for Sloppy Joes Ц I just thought that it couldnТt be that difficult. Well Ц I forgot about it on the stove and ended up with a big glob of hamburger the size of the frying pan. I had to cut it like it was a hamburger steak. I just put it in the freezer and will figure out how to do something with it later. Maybe IТll just go back to cooking Blueberry Salad over and over and over. Cooking is just not going so well right now. I can do laundry just fine. IТll get the cooking eventually. Another mom I know who lost her son says that she is going through the same thing Ц so I donТt feel so odd. But still, it bothers me.

IТm so thankful that our neighbor is bringing over supper tonight. I am thankful to other moms at school and MOMS for all the meals and EVERYTHING. I am thankful to the moms at school for offering their friendship and information in helping get into Уthe sceneФ with Ardena. I am thankful to my sister, who is so selfless and loving toward me.

I really donТt know myself anymore either. My old reads do not do it for me anymore. Funny mysteries just donТt appeal to me right now. IТm sure it is understandable why Janet EvanovichТs funeral parlor scenes just are not my thing right now. Maybe a more serious and meaningful read is what I need. I keep thinking about the book, УThe Lovely BonesФ, by Alice Sebold. The whole book was beautiful, though the initial content was very disturbing. I wonder if there are any more books similar to that.

I have a house full of stuff all over the place and I just canТt decide what to do or how to go about doing it. Maybe I need a little more time before I jump into some projects. IТm afraid that in my state of mind, if I tried a house project, IТd just end up dismantling the place.

I'm rambling again. Thanks for checking in on us. We are all just doing the best we can.

God Bless You,

Toni

Wednesday, May 11, 2005 9:22 PM CDT

Keeping busy is good for me, but bad for the housework. IТm still a nutty grieving mommy. Crying when something reminds me of something Jessica that would like Ц like the beauty of hearing all of the children singing in Mass on Tuesday morning. Jessica really wanted to go to school there, she would have loved it so much. It bothers Ardena when I cry. She thinks it is because she or Father or someone is talking about Jessica. She wanted to know if she should stop talking about Jessica. I explained to her that she can talk about Jessica all that she wants. That I enjoy hearing her talk about her sister and how much she loved her. I explained that Ardena was such a wonderful sister and that Jessica loved her so much. Ardena reminds me that Jessica still loves her. Yes, Ardena, you are so wise. I tried to explain that I cry because I miss Jessica. BUT I wonder if I should be explaining it Ц or how to explain it in the right way, so that it does not interfere with her own grief process Ц because Ardena misses her too, but is not crying Ц at least not now Ц that that is o.k. and quite normal for a kid ArdenaТs age. Crying would be normal too. Tim misses her too Ц and is not crying all the time like I am. Crying would be normal too. But for some reason IТm doing it a lot. I suppose itТs a Mommy thing.

(Update: I started this entry this morning. This afternoon I learned that Ardena did cry in school today about Jessica. IТm so thankful that the school is so supportive of Ardena.)

Father talked about Jessica in Mass on Tuesday. His point was that her life and death can touch many lives and bring many people to search their hearts and move them in a holy direction. BUT, he warns that it is not healthy to get too consumed with trying to understand and figure out WHY this has happened. There is the simple beauty of our faith of just accepting it and leaving it up to God as to what the purpose is. There are just times when life does not make sense, and then we just have our faith. AND our faith can help us get through this. Father gave a similar homily during JessicaТs Funeral Mass.

This speaks a lot to me. I am so thankful to be reminded of this truth. I think that there is a danger in being too consumed with grief. I know that we have to grieve Ц but what IТm talking about is being so consumed with it that we allow ourselves to neglect what is important Ц or we allow ourselves to accept the unacceptable because what ever it is, helps us run from the pain. I think the running from it can trap us in unhealthy and destructive patterns. So, let us not run from emotional pain. But, let us grieve with FAITH and with GODТS loving GUIDANCE.

Crying one minute and laughing the next. ThatТs how it is around here with me.

Our neighbor, Barry, and I were enjoying a good visit on the front porch yesterday afternoon. It was nice that the kids were playing in the back yard. I was thinking how nice it is that we have such a nice play set that the kids can play on. Then we discovered WHY the kids were playing so well that we actually got to visit. They had decided to use the side walk paint to paint JessicaТs Play Set!!!!!!! Bright pink, bright yellow, and bright blue. Painted like a rainbow! Jessica would have loved it!!!!!!!! But Ц I decided IТd like it back to itТs original Redwood. So, I said that we would need to get the paint off. OH, BOY! - a car wash for the play set!!! I didnТt really intend for THEM to do it, but the idea just took on a life of itТs own. The kids just thought that would be great fun. Their energy just amplifies to a point of silly chaos. Ardena slides the paint tray down the slide for Logan to catch. He does not catch it and it hits the ground splashing bright pink, bright yellow, and bright blue all over him from hair to shoes. Then Barry and I gave up on thinking we could keep the kids out of it, so we said they could help wash it. Well, you canТt have a wet play set without the kids wanting to slide down the wet slide, so away they went and landed in the mud at the bottom of the slide. So then we had a clean play set and three muddy kids. THREE VERY MUDDY KIDS!!!!!!! SOOOooooo, I didnТt want their mom to have to come home and clean up her kids, so I put them all through our tub and called her and said she could have clean kids if she brought up clean clothes. The chaos died down just as Tim was getting home. He asked what the smile on my face was for. He just missed all the fun!!!!!!!!

I am thankful for the dreams I am starting to have of Jessica. My first dream was not very good and it left me afraid of my dreams. But the last three dreams have felt very wonderful. The first good one was that I woke up because it felt like Jessica was standing by the bed wanting to get in bed with Tim and I. It was such a wonderful and comforting feeling. The second good dream was about Tim and I and Jessica and she was driving the car. The third dream was about the Pope Ц John Paul. I do not recall ever having a dream about the Pope before. He was looking for me and found me and gave me a special blessing because of Jessica. When he raised his arms, his vestments parted in the middle and revealed a golden shining light Ц like his whole underdress (or what ever it is called) was made of pure gold. Tim thinks it is called a УchasubleФ. It was so beautiful. I woke up feeling emotionally wonderful. I hope I have more wonderful dreams about Jessica.

I'm rambling on a bit here.

Please pray for all marriages and families. That they are made stronger in their moments of joy and in their moments of grief.

God Bless You,

Toni

Sunday, May 8, 2005 3:50 PM CDT

Happy MotherТs Day.

I'm having a very emotional day. Actually, the last three days have been very emotional. I'm not feeling very strong. I actually feel king of nutty. I think I must have been emotionally numb after Jessica's passing and during all the funeral preparations and the funeral and burial service. The days before her funeral, I remember feeling too worn out and had too much to do to cry. I was determined to have peace about this. I felt like pushing people away or avoiding people because I did not want to cry. I wanted to just feel normal. I didnТt want to feel like I had just lost my beautiful child. I just felt like my mind and heart were not in sync with those around me. I did not want to feel the pain. Now I feel embarrassed and ugly that I was feeling that way. IТm so thankful for all of the support and prayers and kindness and love that people have sent our way. So very, very thankful. And I am thankful for those wonderful people who have reached out to our family. Now I'm a mess and cry all the time. I got through lunch today without crying - until dessert. We have fond memories of eating out with Jessica and she would have chocolate ice cream from head to toe by the end of the meal. I told Father Sullivan this morning I was feeling kind of nutty. Nutty that I was numb and now nutty that IТm emotional. He said that God has a way like that of helping us through all of the busy part of what we have to do in situations like these. Then after that part is done is when one usually starts to really feel the grief. It feels so strange to feel so many emotions all at the same time. I guess there is no way to go on without going through this. So, I guess IТll just be a nutty grieving mommy.

I am so glad that I am Mommy to Ardena and Angel Jessica.

Here are lyrics to a song that speaks to my heart. Below is a link about the artist and it has a sound clip. Also, there is a link to the web page of the Author of "Owly" - Mike Thaler

Artist: John McDermott Album: Remembrance Title: One Small Star

When i need to feel you near me
I stand in this quiet place
Where the silver light of countless stars
Falling on my face
Though they all shine so brightly
Somehow it comforts me to know
That some that burn the brightest
Died an eternity ago

Chorus:
But your light still shines
It's one small star to guide me
And it helps me to hold back the dark
Your light's still shining in my heart

I'm learning how to live without you
And i never thought i could
And even how to smile again
I never thought i would
And i cherish your heart's memories
Cause they bring you back to life
Some caress me gently
And some cut me like a knife

Chorus:
But your light still shines
It's one small star to guide me
And it helps me to hold back the dark
Your light's still shining in my heart

Can your soul be out there some where
Beyond the infinity of time
I guess you've found some answers now
I'll have to wait for mine
When my light joins with yours one day
We'll shine through time and space
And one day fall on a distant age
Upon some stranger's face

Chorus:
But your light still shines
It's one small star to guide me
And it helps me to hold back the dark
Your light's still shining in my heart
Your light's still shining in my heart

Friday, May 6, 2005 8:55 AM CDT

At this point, I'm wondering what to write about. I guess I'll just write about what my heart is doing.

The night before last and yesterday morning Ardena and I went out to visit with the cows, baby calves, and bulls. We picked fresh, long, soft grass to feed them by hand. The first calf that we saw was Jessica's steer calf named "Jessica". Jessica was not interested in us much. He was busy trying to get a drink from his mommy. We then went out to the pen and I talked to the cows that were way down at the other end of the pen. The whole bunch of them come running. Ardena really gets a kick out of me being able to call the cows. When they get up to us they all stand there like, "what now?" They loved our offering. But, all we had was about three mouth fulls - for the whole bunch of them. We stayed behind the fence to feed the bulls - just in case you were wondering if we were smart about that.

Yesterday morning Ardena and I decided to mix the soft grass with hay. We decided we were making the cows a salad. We thought that Jessica would have really enjoyed doing that with us. She really liked making the cats a salad out of catnip so she would have really liked that she could make the cows a salad too. We felt like she was watching us and having a good time.

The day before yesterday I was reading a Miles Kimball catalog. There is an item that says it peals hard boiled eggs automatically and "...out poops your egg..." I got a good laugh out of that thinking that Jessica would love to say that over and over.

I cry every morning when I just wake up. The reality of it hits me. I think of all the books that we read to her. Sometimes she wanted the same book over and over and over before she was ready to go to bed or before she was ready to do something else. Sometimes she would request several books in a row. I cry when I think of her energy. She had a very strong, loving, happy personality and it would fill every space that was available around her. I cry when Tim tells me he had a dream where she was asking him to tickle her. I cry for many reasons. I laugh for many reasons. I am so thankful that we got to know and to lover her.

God Bless You,

Toni

Tuesday, May 3, 2005 9:09 AM CDT

JessicaТs Rosary Service:

Ardena was swept up in the beauty of the church. All of the flowers were so beautiful. And Jessica was very beautiful. I thought that she would want a halo of flowers and babyТs breath and pearls and rinestones to match her beautiful dress. Thank you Aunt Carol for getting the flower halo/wreaths made. They are just perfect. She looked every bit the angel that she is.

Father Sullivan fondly recalled JessicaТs confirmation. We were afraid that it would be a difficult moment for Jessica because she could not tolerate interactions well. We were afraid that she would be uncomfortable and have a screaming rage. When we got to the church, she started feeling pretty good. After her confirmation she felt so good that she ran around and played just like herself. She played a game with father that was just wonderful. She had such a beautiful energy about her and she was all smiles and giggles and had a great time playing with Father. She then ran around with her cousins. The rest of the day went very well. She played most of the day with her cousins. It was wonderful.

Near the end of the Rosary Service, Father Sullivan read a book to Jessica. It was a book that Ardena had brought home from the library and we had read over and over to Jessica while we had it. The book is Titled УOwlyФ by Mike Thaler. ItТs about a little owl that asks his mommy all kinds of questions. She so wisely suggests that he go find out for himself. Question like, УHow many stars are in the sky?Ф УHow many waves are in the ocean?Ф УHow high is the sky?Ф He comes back exhausted from finding out for himself and tells his mommy what he has learned. There are just too many to count. He tells his mommy that he loves her. She asks him how much. ItТs more than he can count. She has a hug for him. He asks how many hugs she has for him. ItТs more that she can count.

Uncle Tony then got up and read the poem that Cousin Jerry wrote. УJesus Smells Like CookiesФ. Thank you Cousin Jerry for that wonderful poem. Thank you Uncle Tony for reading it to Jessica.

Sunday, May 1, 2005 6:43 PM CDT

Here it goes. IТve been afraid to put these events and thoughts to this journal because I was worried that you all would think IТm cuckoo. But for those of you who know and love me, IТm sure youТll appreciate this.

I keep thinking about the day that Jessica passed. It didnТt feel to me like she was still in her body, but I could sense her presence in our home. The grief nurse was here and had helped us get a handprint of Jessica for a keepsake. After that JessicaТs breathing changed to where she would not take a breath for a very long time. I got Tim and we were with Jessica. We were sure she was going to pass. Then the neighbor to the back of our house started his lawn mower and filled the house with that awful racket. I couldnТt hear Jessica and I couldnТt think straight and all I could think of was that this is not how I had imagined it would be like when Jessica passed. I wanted a peaceful and quiet passing. I asked Tim what I should do. Tim did not have any idea of what to do about it. I felt horrible leaving her side, but I charged out the back door and headed over to the neighborТs. After I got through our back gate I stopped. I wanted to tell him to please shut off his lawn mower because my daughter was dying. Then I wondered what that would sound like to him. I thought he might think I was nuts because I was telling him to turn off his mower instead of calling 911. Then I thought he might call 911 and then we would have even more commotion on our hands. I went back in the house. I made a comment to the grief nurse something about that people should know they are not supposed to mow their lawns when their neighbors are dying. I then went back into the bedroom and Tim said that JessicaТs breathing was fine. I keep thinking that Jessica was watching all of this and decided to stay for a while so she could give us the kind of passing that we needed. Or Ц maybe she (or someONE up there) was flexing the funny bone again and made us think she was going at a moment like that just to pull a joke. I do think that she needed her sisterТs kiss, but I really feel that she knew we needed her passing to be like that.

It is my deepest prayer that she still feels our love for her.

Our Beautiful Jessica.

Friday, April 29, 2005 1:45 PM CDT

Jessica E. Hindman

Jessica E. Hindman, 3, Lincoln died Wednesday (4/27/05). Jessica was born on July 25, 2001, in Lincoln. She loved her MOM's & Kids Group, her cat Studebaker, painting rainbows and going to church, praying and singing to Jesus.

Services: 2 p.m. Monday, Blessed Sacrament Catholic Church, 1704 Lake St., Lincoln. The Father John R. Sullivan. St. Mary's Catholic Cemetery, Rushville. Rosary: 7:30 p.m. Sunday, church. Visitation: 9 a.m.-9 p.m. Saturday, 9 a.m.-5 p.m. Sunday, all at Butherus, Maser & Love Funeral Home, 4040 A St. Additional services: 10 a.m. Wednesday, Immaculate Conception Catholic Church, Rushville. Memorials, in lieu of flowers, to the family.

Thursday, April 28, 2005 10:15 AM CDT

Jessica stayed resting and comfortable all day yesterday. Last night, Ardena went to Sidney and LoganТs to play. We could hear them outside. We could hear the birds and the dogs. We could hear the ice cream truck music. These are the sounds of our neighborhood. I was wondering what was keeping Jessica here. It felt like she just loves us too much to want to leave. It felt like she has so much fun here and wants to play with her friends and have fun. I said to her, УJessica, you can go to heaven. It will be fun there.Ф Ardena came in the house shortly after that and came in the bedroom where Jessica and I were. JessicaТs breathing always gets deeper and faster when she hears Ardena. Ardena asked, УIs it true that Jessica is really going to die?Ф I responded, УYes.Ф I explained that her cancer was just too much for JessicaТs body, that there is no medicine that will keep it away. Ardena then had to go do her homework. Then she bounced back into the bedroom. Ardena jumped up on the bed and said that she wanted to do УKissing HandФ with Jessica. She and Jessica had read a book called УThe Kissing HandФ. The story goes something like this - a young raccoon is afraid to go to school, so his mom gives him a kiss in the palm of his hand and tells him that he can put it to his cheek whenever he needs to feel her love for him. He gave his mom a kiss in the palm of her hand too so that she could put her hand to her cheek whenever she needed to feel his love for her. So Ardena gave Jessica a kiss in her hand, then kissed her on the lips, then Ardena put her hand up for Jessica to kiss. Ardena said that it felt like Jessica actually kissed her hand. Then Ardena left the room to go do something with Tim. It was time for JessicaТs medicine, so I got that and then I was going to brush her teeth. I could tell that JessicaТs breathing had changed and I got Tim. Tim and I were both there, each holding one of JessicaТs hands when she went to heaven.

Our Beautiful Jessica.

Wednesday, April 27, 2005 11:39 AM CDT

I have posted more pictures.

Jessica is resting calm and peaceful right now.

Our Hospice nurse has been wonderful about monitoring and adjusting for Jessica pain and comfort and agitation.

I am so thankful for Tabitha Hospice. The focus is to help the whole family go through this journey - not just focus on Jessica. They have helped us so much in helping Ardena. They have helped me find more peace. I am thankful for UNMC Sue Nuss and Dr. Gordon. They have made regular contact with us and promised to be there for us every step of the way. I am thankful for our wonderful Pediatrician and the wonderful nurses there.

The agitation that Jessica had last night seems something besides pain. I think it's her beautiful mind wanting to talk with us and her little body just won't let her.

My deepest prayer right now is that she still feels our love for her.

Please continue to pray for peace for Jessica.

God Bless You,

Toni

Wednesday, April 27, 2005 3:18 AM CDT

I was sleeping with Jessica tonight. At one point she moved over next to me and put her head on my shoulder. I was still half asleep and I was thinking this is so wonderful to be holding her. I was so into my slumber that I had forgotten about her cancer. It just felt like her and me, like we used to be.

Her cuddles quickly turned into agitation as her meds were wearing off. She is not saying much now. Just moans and yells out and fights. I feel sick to my stomach. I am crying because we are loosing her and I am crying because God has not taken her yet. Our beautiful Jessica.

She is calm and sleeping again now. Tim is with her.

Please pray that Jessica passes quickly and peacefully.

God Bless You,

Toni

Tuesday, April 26, 2005 3:47 PM CDT

Jessica is comfortable mostly when she is sleeping. When she is not sleeping, she is mostly very agitated. I think mainly because her little beautiful mind still wants to play, but her body is just not working the way she needs it to. She can hardly hold her head up. I do think that her pain is controlled well right now. We are helping her to be comfortable and calm by giving her some meds to help with pain, but also to help her sleep.

The night before last, at mid night, we had a good moment with Jessica for about 10 minutes. Jessica wanted to eat Cheetos. She said the kind that looks like worms that Ella likes. She ate about half of a Cheeto and sipped some milk. Then she wanted to make the cats a catnip salad and she fed that to the cats and then threw it all over the dining room. The cats have enjoyed that. Then she wanted to sit with her Mommy. She likes me to cross my ankles when I am sitting on the floor so she can sit in them like a little bird in a nest. Then told me, УI love you, Mommy.Ф Then she went back to sleep.

We did have a very beautiful moment last night for about 15 minutes where she woke up and told Grandma Jeanne, УGood Morning. I love you, Grammy.Ф Then she asked to see Tim and wanted him to carry her to the living room and wanted to sit with him. She told him, УI love you, Daddy.Ф Then she said she wanted to see her Cousin Susan, so we got Susan in the house. Then she said that she wanted Ardena to sit with her on the couch. She said, УI really love my sister.Ф Then she wanted Uncle Brian to read a book to her. She couldnТt hold her head up and kept dosing back to sleep. Then she saw me and put her arms out and said that she wanted her Mommy, so I got her and sat on the floor with her and held her and she went back to sleep.

God Bless You,

Toni

Monday, April 25, 2005 8:58 AM CDT

Jessica had a very hard day yesterday. She wants to play, but cannot walk. She wants to be so independant, but she stumbles and we are concerned she will fall. She wants to wear her Princess Shoes, but her feet are so swollen that the shoes hurt. She wants us to hold her, but it hurts when we touch her to pick her up. She wants to sit up, but cannot hold her head up for long. She wants to play Little People with her Cousin Emily, but just cannot think through it. It's very frustrating for her.

She did have a few moments yesterday morning when she and Tim did art with markers. They colored in a rainbow together.

She wanted to sleep in her dress up dress that her bath aid brought her. She also is sleeping with her Princess Shoes and her new Princess Purse filled with neclaces. She also wanted to sleep with her pink alarm clock. It's actually Ardena's alarm clock, but Ardena is so lovingly letting Jessica call it her alarm clock.

When Jessica is sleeping she goes through moments where she talks and moves her arms with her dreams. She is saying, "Ice Cream Truck....Ducky....Uppy, Uppy Daddy....".

I am thankful that Grandpa Bruce is here. Jessica is glad to see him. I am thankful that my Cousin Susan is here. Ardena is enjoying spending time with Cousin Susan and Grandpa Bruce and Aunt Carol and Uncle Brian and Cousin Emily.

Saturday, April 23, 2005 8:46 PM CDT

We were on a wagon ride tonight and decided to take a different route. We came upon a clown that was out in the neighborhood holding balloons, walking his dog, and pulling a wagon loaded with presents and pinwheels, and heading for JessicaТs house!

So you might wonder what one would do if they came upon such a sight when they are out for a wagon ride. Jessica knows what to do. You make a parade out of it! A parade with a clown and a wagon and a dog and balloons and presents and pinwheels Ц itТs just the most perfect thing to do for a kid like Jessica. And you invite your cousins and neighbors to join in your parade. And you walk around and around and around the neighborhood having a wonderful parade until you just canТt keep your eyes open anymore and your cousins wear holes in their socks.

Thank you! Thank you! Thank you!

Friday, April 22, 2005 8:26 PM CDT

Things that went well today:

Aunt Carol stayed with Jessica all night. Tim and I got to sleep in our own bed! Wow! I think thatТs the first time in a month that I got to sleep all night!

Jessica is having better pain control. With that, she is also showing some of her normal self and normal intellect. She is able to enjoy some more interaction with Ardena Ц but gets exhausted easily. She has not done any screaming rage.

Jessica wanted to go to the Zoo today. So we went to the Zoo. She wanted to wear her birthday dress from last year and the flower sandals. She would not put on the dress until I found the sandals. Thankfully I found the sandals and thankfully they both fit. She got on the horsy, УWhisperФ, but then decided she did not want to ride. She just wanted to ride in her stroller and look at things. She noticed the birds and wallabies. She didnТt want to have anything to do with the camels today. She wanted to go see the little birthday house. She just sat there and smiled and looked around. Then we took a train ride.

She is not walking around much, but she wants to ride and look. She also wants to read books and watch Nemo.

Things that didnТt go so well today:

The whole day actually went pretty well. Jessica keeps wanting to drink milk or cola and canТt keep it down much, but she is enjoying herself.

Some more people that IТm thankful for:

The wonderful people that I used to work with have been wonderful. Thank you!

The faculty and staff and Blessed Sacrament School have given Ardena and our family extraordinary love and support.

A wonderful person brought over a whole bunch of balloons today. It looks like Barbie and Disney Princess at the Zoo in our house with balloon shaped like animals and Barbie and Princesses.

IТm thankful for hour Hospice Nurse, Brenda. She has shared with us such valuable skills in this part of JessicaТs journey. Again today Jessica was resistive to me working with her tubes and lines. I calmly said, УOh, Mommy is just doing something to take care of you.Ф She responded, УOh, O.K., you can do that.Ф

God Bless You,

Toni

Thursday, April 21, 2005 12:40 AM CDT

The bright part of our day:

This morning Jessica told me that she had a dream that she was a window. She did not say anything else about the dream, except that she liked the dream.

Jessica has been looking forward to meeting a soldier and having them give her a medal for being a Young Hero. She likes being called a УBrave Young WomanФ. A soldier is a hero because they protect us. She says that her Daddy is a hero too because he protects her. Her understanding of a soldier is that they are like an astronaut because they wear a special suit, but they donТt have to wear a bubble on their head. Then they donТt have to worry about how they are going to eat.

Today, we met Lieutenant Colonel Bob Vrana, General Robert Bailey, and State Command Sergeant Major Thomas L. Shunk. Jessica was very pleased to receive her Young Hero medal. She was even more excited to receive a National Guard Beannie Bear. It was wonderful that she could have a bright spot in her day.

SEE NEW PHOTOS

The not so bright part of our day:

We were out of the house with her for about 45 minutes to go to the National Guard. When we got home she was exhausted. She spent some time with a bath aide, but just wanted the bath aide to read her a book.

She wanted to lay down and nap at about 1030. When I changed her diaper, there was bright red blood with the stool. She kept saying ouwe, ouwe, ouwe. Ц like something was hurting. Earlier this morning she couldnТt keep her meds down and she couldnТt keep the next dose down either. The thought with her medical team is that her digestive system might be shutting down and that she cannot handle the NG feeds anymore. They are sending an I.V. pump to use so that pain meds can be given by I.V.

Some people I am thankful for:

I am thankful that Tabitha Hospice has assigned Ardena a Grief Nurse. This nurse will be meeting with Ardena and doing projects and introducing concepts to help Ardena through this difficult time.

The school has a teacher there with a degree in School Counseling. They have been in contact with us and are planning ways to help Ardena.

From what IТve been reading, the grief process is different with children and can often take many, many years. I suppose it has to do with their level of understanding during their development. I would think that when they reach an age where they have a more complex understanding, then they might need to grieve all over again with their new skills.

Thankful for Grandma Jeanne. Jessica finds so much comfort in having her here.

You MOMs are wonderful.

IТm very thankful for the families at school who are offering to help with Ardena. Ardena is looking forward to showing calves at the end of the month.

I am thankful for our friends and family who are helping with Ardena. She really needs this special time now. She needs us too, but she also needs to be able to do normal activities and pursue her own interests.

I am thankful for my husband, Tim, who is such a loving father to the girls. Tim is also a source of spiritual strength to me. One of the reasons I married him is because I admire his faith.

God Bless You,

Toni

Wednesday, April 20, 2005 9:51 PM CDT

Ardena and I went to her schoolТs Learning Fair last night. The kids really put together some really neat projects. It felt nice to get to do something with Ardena. The Worm Farm turned out well. The girls learned that the worms like the onion the best. They fed the worms food put in strips to see if the worms like one better than the other. They had chopped apple, chopped broccoli, chopped carrot, and chopped onion.

On the way there Ardena told me that she does not have much fun at home anymore. It seems Jessica just cannot tolerate even seeing other people in the house talking to each other. The Hospice Nurse explained it as probably being because Jessica wants to be a part of it, but just not able participate like she wants to or that the interactions causes her head to hurt more. Jessica is bright enough that she probably feels frustrated that her mind is not working like it used to.

Jessica woke early this morning - FIVE THIRTY IN THE MORNING - asking for Grandma Jeanne. It's good that Grandma is right here and that Jessica feels so much comfort having her here.

We have a better approach now to pain control and this seems to be helping quite a bit. Now that we can see the agitation style, we have a better indicator of when she needs more. We now are using a titrate to comfort method and it does seem to be working better.

We still have to keep interactions with others to a minimum and keep them very simple. ItТs hard to figure out just exactly what simple means. Especially when we have been able to have very complex interactions with Jessica Ц jokes, singing songs from memory, being silly, planning things, doing art projects. Now she just cannot handle all of that.

She also gets very contrary and resistive - no matter what.
She has been refusing to take a bath for days. Finally today I asked if she would like to take a bath on the porch like the cow boys do. OF COURSE SHE WOULD LIKE TO DO THAT! Hey - I finally have a clean girl.

Today, she was set off into irrational and agitated behavior because I asked if she wanted to decide where to hang the wonderful posture of a rainbow that the school kids made for her. She kept changing her mind, then started yelling and saying things that didnТt make sense to me. Then I finally figured out that she wanted to put the masking tape rolls on the back of the paper. Then she wanted to do the rolls herself. She used to be able to make rolls out of the tape, but for some reason, she just couldnТt do it this time. The she just got so upset that we had to just put the thing away.

We gave some extra pain med to see if that would help Ц it did. She was then able to have some good interactions with Ardena and her Uncle Brian. They ate ice cream from the ice cream truck and painted on the side walk. Just before her next med time, she got pretty irrational and was demanding that Uncle Brian do everything for her Ц change her diaper, but she would not let him use the wipes the way he needed to and would let him put the fresh diaper on only if they went outside. Then she wanted to take a nap with Uncle Brian. So they went in and took a little nap.

I spoke with the Hospice Nurse about this and she explained that it is an example of JessicaТs mind not working the way she remembers it has worked and the frustration that comes from it. We will be sure to not offer too many choices or expect her to make a decision Ц other than yes or no. The Hospice Nurse also explained that at this point, patients want to feel like they are being taken care of and decisions are being made for them. Jessica had been resisting meds in her NG tube when I would tell her itТs time for meds. She has also been resisting when we need to flush her central lines. So tonight, I tried some of what the Hospice Nurse suggested. Instead of telling her I was giving her meds or flushing her lines Ц I just said, УJessica, Mommy needs to do something to take care of you. I really like taking care of you. It will just take a little time.Ф She let me take care of her with no resistance.

News about our cats: Marble has been vomiting blood and not keeping food or water down. We made a trip to the vet thinking that we might have to put her down. We got good news. Seems she is perfectly healthy, but is completely blocked up with a hair ball. So, the vet wants me to give her meds SIX TIMES A DAY!! I have to give Jessica meds SIX TIMES A DAY!! I think I may be going crazy.

Thank you all for checking in on us and thank you for your continued prayers. Please pray that Jessica can be comfortable and can enjoy her days as much as possible. Please pray that Marble gets the meds that she needs and does not get Jessica's meds.

God Bless You,

Toni

Tuesday, April 19, 2005 6:36 AM CDT

Jessica has a few hours each day now where her interactions with one adult are quality. BUT - she definitely cannot tolerate much interactions with kids or tolerate waiting. Music and t.v. seem to bother her now - too much stimulation. Sunday, she had two hours in the morning that were fair, but the afternoon was very nerve racking on all of us. She screamed and yelled at everyone from about 5 PM to 930 PM. At one point, she called me stupid mom. I did not respond. Of course that caused her to want to say it more to make sure that I heard her. Finally, I decided to respond saying, Уo.k. Jessica, I heard you, IТm your stupid mom.Ф At that point she jumped up from the floor and said, У Oh, I love my stupid mom!Ф She ran to me and gave me the biggest kiss and the biggest hug and said over and over how much she loves her stupid mom.

We did enjoy an hour at the zoo on Monday - riding train, riding horse, feeding camel - BUT just as soon as she had to wait in line or deal with other kids - oh boy! I am so thankful that everyone there was so understanding. Then this afternoon, I had too many things going on and didn't get to get her some quiet time on time and she completely lost her mind and ended up in a screaming kicking rage and tried to pull her tube out of her nose. My shoulder is injured from trying to control her.

We are involved in Hospice now and the Hospice Nurse is really helping us understand this process and helping us determine what helps Jessica feel better. Obviously, at this point, interactions with kids is not making her feel better. It seems that she is having interaction overload and just cannot tolerate it. The Hospice Nurse spoke with Dr. Gordon and Sue Nuss today and the thinking seems to be that the cancer may have metastasized to the brain and/or is causing swelling in the brain to the point where it is just too painful for her to think straight. I guess I would compare it to us having a headache and not wanting music or noise or not wanting to interact much. ItТs just that Jessica cannot communicate what is going on and just expresses it the way she is doing. Also, as the cancer spreads, it uses up the pain meds more, so she will need continually changing doses to help keep up with the pain. Also, since it is in her liver, her body is not responding as usual to other meds, so it is a continuous trial and error to help Jessica feel better.

When she woke from her nap, she requested that she and Tim take a drive in the pick up and go through the Runza drive through. She was so pleased that she gets to go on a trip with her Dad. They returned and both of them said they had a good trip. IТm so glad Tim was able to have a nice trip with her.

She made it again for about two hours of good interaction, then she got very irrational and difficult. But then right before bed, she wanted to listen to Tim play and sing УSneaky SnakeФ and she invited Ardena to join her. She then got up and danced to the music. I enjoyed so much watching them both dance and have a good time like they used to. Please pray that we have many more moments like that.

When relapse of this kind of cancer occurs, every family will need to decide what is right for them. There is no protocol to follow Ц the prognosis is so poor. There is no easy way to do this. The child/family is either going to suffer the treatment demands, side effects, pain, separation, and isolation from continuing treatment OR the child/family is going to suffer the effects of progressing disease and demands of striving for pain free and quality. We still feel we made the right choice for us, though we know that it is not what feels right for every family. We are thankful that we can all daily shower her with our love and be together as a family. We are making memories with family and friends that we will cherish for ever.

Please continue to pray for the families of children receiving treatment for cancer and those who have lost their children to cancer. Please continue to pray that the stress, grief, and loss does not destroy their faith, their marriages, their other children, their friendships, themselves, and their other family members.

God Bless You,

Toni

Sunday, April 17, 2005 0:13 AM CDT

We had a fairly nice day today. I'm so glad.

Jessica was a little feisty getting ready for Mass. She wanted to go in just her diaper and blankie. Did not want to wear her pretty dress.

We got there and things went just fine. She was thrilled with getting fresh roses and shared them. Then she teased Father a bit and ran around with her cousins. The afternoon and evening went well too, with only a few episodes of her screaming rage.

I spoke with the Pediatric Oncologist On Call, Dr. Grovas, this morning to get his perspective on her screaming rages and other symptoms. He shared some perspective and had some suggestions and said that if things didn't improve by next week, then we would look at some other ways to help. His suggestions seemed to work for today - so I'm very thankful. So very, very thankful. Please pray that we have more days like today.

Please continue to pray for the families that are dealing with life threatening illness and for families who have lost children to cancer. I pray that all spouses can look to each other for strength and support to make it through the treatment and make it when they are adjusting to life without their child. The stress involved in dealing with a situation like this is so huge that it is unreal. Cancer is a family illness - it effects everyone in the family. The stress can cause illness, addictions, and mental illness to surface in the parents and siblings. Marriages are stressed to the point of breaking. The divorce rate amoung families with children facing life threatening illnesses is between 75 and 80 percent !!! These couples need to fight to keep their marriages together. Siblings often have emotional scars from this daily fear and uproar that cause depressions later in life. Family members and spouses can be so consumed with grief and anger that they hurt themselves and hurt the very peope who love them and need them. Childhood cancer does not just take our children, it can destroy families. The other children still need to have their Mommys and Daddys to be there for them. The husbands and wives still need to have each other be there for them. For these families, please pray for peace and God's loving guidance.

God Bless You,

Toni

Saturday, April 16, 2005 7:10 AM CDT

The good parts of our days:

I am so thankful to have my cousins, Scott and Susan, travel here and help with the house, Ardena, and Jessica. Uncle Russ and Grandpa Bruce were here too. Uncle Brian and Aunt Carol, Uncle John, and Cousin Emily. It's so wonderful to have the play set in our back yard so the kids can all play and the adults can play with them. I have also enjoyed taking some time to just go out with my cousin Kim. She is not just a cousin, but a friend. Ardena digs spending time with her too. Neat truck and cool tunes.

I am so thankful for the friends that Ardena has at school and the families at our church and school who have been so supportive.

I am continually and deeply thankful for all the MOMS!!!! Your friendship and love have just blown me away.

Jessica still has her funny bone that she is good at using. Yesterday she asked Tim, "Where do you think Stu's underpants are?" (Stu is our cat). Then she grinned and watched to see how he would respond.

Jessica had fun making katnip salad for the cats and watching them eat it. I think she thought I was kind of nuts at first by suggesting that we make them a salad. BUT she trusts me so much so whe went along with it, and it was fun to be silly, and then she really though it was great when they actually liked it.

Jesica likes being outside painting on the side walk or riding her Rock, Ride, and Roll or riding Sidney's Hot Wheels Trike.

Today is a special day for our family. Jessica is getting confirmed. We are not having a reception or anything. But we are having a Mass at 1 P.M. Please pray that Jessica can feel good and enjoy being at the church.

Talking about her confirmation has lead naturally to us talking to Ardena about more of what Jessica is facing right now. Ardena's natural question was, WHY is she getting confirmed? WHY can't she waite until the 5th grade like everyone else? We explained that Jessica is not feeling well, that with her hurting a lot and not feeling well at all, that it tells us that her body might not work anymore. Ardena asked if she might die. We said yes. Ardena asked if we could go to her funeral. We said yes. We then told Ardena that it would mean a lot if she would pick out a Saint's name for Jessica's confirmation. She was very pleased that she got to do this. We also explained that Jessica would be going to heaven to be with Jesus. Adena responded, "like the Pope". Yes, then we asked her what she though Jessica might say to the Pope when she sees him. Ardena didn't know. Tim thought she would say, "Boo". I thought that she would ask to wear his hat. Then I told her what I though Camer would probably say. Camer is one of Jessica's friends who has already gone to heaven to be with Jesus. His mom would probably bonk me on the head if I wrote what I think Camer will say.

To not so good parts of our days:

Yesterday was a very difficult day. We see increases everyday in JessicaТs intolerance to interactions with the friends and family that she usually loves to interact with. Her sweet wonderful self makes some appearances, but most of the day she yelled and screamed in anger at things that usually would not upset her. She did this yesterday from about 1:50 in the afternoon until she went to bed. She had a few minutes when she did not, but they were not very long amounts of time.

We see the need to make sure that Ardena does not have to be around this too much. We are asking friends and family to spend special time with Ardena away from the house when Tim and I cannot take her places.

This is not what I had envisioned we would be dealing with by having her at home. I had this image in my mind that we would all just be here enjoying each other. IТm not sure that pain is the issue with the screaming and anger.

IТm suspecting a sinus infection or something like that Ц at least in the past she would get this way when there was some infection going on. BUT it could be other things too. Low hemoglobin or hormone rage Ц the tumors put off hormones. Could be rebound headache from all of the ibuprofin that she has to take to control the pain.

I want her to enjoy her family and friends and I want her family and friends able to enjoy being around her. I will do what it takes to get this assessed and addressed.

The pain control continues to need adjustment. I understand the need to try different things and adjust things up to higher doses gradually. Also I understand the need to try her on lower power things first if they work and then move to higher power things when it is clear that other things are not working. BUT I just wish we could find something that would work for longer than a day. It does seem that it's a daily adjustment. I suppose that the way it is with her changing body and with this kind of med. I have been looking for information in a neuroblatoma support group and the parents did offer information on pain control meds that worked best for them. I'll suggest these to the docs and see what they think.

Thank you for checking in on us. Thank you for the guest book entries and mail. It truely helps to replenish our strength and faith.

God Bless You,

Toni

Thursday, April 14, 2005 7:43 PM CDT

I'm sure you can imagine JessicaТs delight when she opened a package that she received yesterday and inside she found 14 pounds of white candy hearts, compliments of New England Confectionery Company, 135 American Legion Highway, Revere, MA 02151-2405 (NECCO)! And then the big thrill has been popping the bubble wrap. We have also received many other packages of candy hearts from friends and family. Thank you to all of you. Your kindness touches our hearts deeply.

God Bless You.

Toni

Tuesday, April 12, 2005 4:21 PM CDT

We are home.

Jessica is napping.

On the way home she had two requests. To go through a car wash and to go see Daddy at work and look at some air planes.

She does feel better in terms of the other issues that were needing attention - the fever and the "bugs in ear". She also needed a blood transfusion. Pain control is still being addressed. Made some changes that help a bit, but not really long enough.

We will be meeting to discuss comfort measures and quality of life measures with professionals who specialize in this.

Thank you for all your notes of encouragement and concern.

Also, thank you to those of you who are pledging for Ardena's participation in the Math-A-Thon. Tim scored her work. She got 280 of 290 points available.

Also, thank you for those of you who responded to my request about candy hearts. Jessica will be thrilled.

God Bless You,

Toni

Saturday, April 9, 2005 11:39 PM CDT

Monday, April 11, 2005

Jessica was admitted to UNMC yesterday with fever and pain and poor appetite and decreased output and feeling off balance and feeling like her ears had bugs in them and feeling like her feet were wrinkley (asleep?) and very irritable and very uncomfortable and sleeping lots.

Today with I.V. antibiotics and ibuprofin added in with her Roxycodone, she is feel a bit better. Still we are having consult to better address the pain and other comfort measures that we can take to help her feel her best.

Saturday, April 9, 2005

School Issues:

Ardena is feeling very enthusiastic about being in a Math-A-Thon at her school to help raise money for St. JudeТs ChildrenТs Research Hospital. The materials suggest a pledge of between 3 cents and 10 cents or more per math problem that she completes. You can also send a flat amount. She has already completed the problems and we will score them. There are about 200 problems. We have about a week to collect the pledges and turn them in. There are prizes for the kids doing the math problems to receive, but Ardena says the best prize of all is that it would be helping kids. If you are interested in pledging for this, we would be thrilled. Please send your pledge money to our home and we will make sure it gets turned into the school. Make checks payable to St. JudeТs ChildrenТs Research Hospital.

Food Issues:

If anyone has any of the Valentine candy hearts in your cupboards that you were saving for next ValentineТs Day, could you please consider sending some to our house? Jessica has developed a taste for them. She really likes the white ones. Some days the only thing she will eat is coffee ice cream and candy hearts and milk.

Medical Issues:

The bone marrow results are back and there is Neuroblastoma in the bone marrow. The doctor said that quantifying it is difficult, but that he could say that it was not subtle. From what the doctor tells us and from what I have read, the chances for a cure at this point, with a child with Relapsed High Risk Neuroblastoma, that has come back in multiple places and in the bone marrow, are nearly non existent. Actually, her doctor was under that opinion even before he knew for sure it was in her bone marrow. I was hoping that if it was not in the bone marrow or not neuroblastoma, that maybe we would have more options that had a more favorable outcome. Doc says that only those with minimal disease have a chance at this point of other types of treatment working. He says JessicaТs is not minimal. ItТs hard to believe that there is something so life threatening in her beautiful little body. She is so beautiful and when she is feeling good, she can play as hard and have as much fun as any other kid. The scans show that it is in multiple places: Neck/chest, liver, abdomen, lymph nodes, both knees, and bone marrow. She complains also of arm pain, so it may be there also. Her cancer is considered terminal. We are going to loose our beautiful Jessica Ц no matter what.

IТm not sure that her pain is controlled any better than it was. We will have to continue to work with the doctors to help with this. Sometimes itТs hard to tell if it is pain or if it is something else. She does say if she hurts at times. At other times she is very demanding and mean and irritable. ItТs hard to know if that is pain or if it is other effects of the tumor. These tumors give off hormones that can cause her to not feel well. She is having what I think are tumor sweats. Her hair is drenched and the pillow is very wet. Also, her appetite has been very poor. So her moods could be from not getting enough nutrition. But still, she has periods where she feels very good and plays and plays and plays.

Tim and I are very concerned that the time she has left with us must be of the highest quality as possible. We want to allow her to just be a kid and to play and with her family and friends as much as possible. We want to be together as a family. This is really hard to talk about. Having to think about this and make decisions about this is so hard. On one hand, IТd like to rush out and try every and anything possible that might have even the smallest fraction of a chance. But if the outcome is going to be the same, we wonder why we should put her through any more of the extremely demanding requirements and side effects of treatment. We need more information on palliative care options before we can decide what might be best for Jessica. Along with controlling the pain, we are wanting to help her feel as good as possible, but also to reduce the amount of time spent at the hospital. BUT, pain meds alone might not be the best way to control the pain and help her to feel the best that she can. I think it will require lots of consideration to balance all of these goals. We had a follow up appointment with the pain control specialist yesterday. Jessica was very upset to be going to see a doctor. She says, УI donТt want to go to the hospital, I want to go to the Zoo!Ф.

I am finding more peace with this. One might ask how I can find peace with this. DonТt get me wrong. My heart is breaking every moment of every day. My pain and despair is so deep that I feel as though if I let myself feel the whole of it, I would collapse. I often find myself unable to believe that this is really happening - Especially in the mornings, when I go in and cuddle with her and listen to her breath. ItТs such a sweet beautiful moment to watch your child sleep and breath.

IТm praying as hard as I can to find peace with this. These are some thoughts that have come to me to help me find peace: Many parents every day loose their children. Children stolen, killed, accidents, drugs .... In our situation, we know we are going to loose her, but do not know when exactly Ц too soon. In one sense that can make it harder - because we face this reality every day and feel the helplessness and emotional pain of it every day. But in another sense it is a blessing because we know what is going to happen and have the opportunity to say good bye in a way that feels right to us. ItТs also a blessing because it really makes us focus on what really matters to our children and family.

Another thought that has been giving me some peace is thinking about how Jesus faced is death. He knew it was going to happen, now it was going to happen. He knew the men who were his friends would abandon Him. He knew the emotional and physical pain He would endure. He prayed and gave it up to God. He faced what was to be. I contemplate what helped keep Him calm and what helped Him face what was going to happen.

Another thought that is helping me find peace is knowing that Jessica has been dreaming about Jesus and says He smells like cookies. Yesterday, we drove by the cemetery that her friend Josh is buried at. Jessica didnТt know it was a cemetery. She says, УLook at that beautiful garden, IТd like to have one of those.Ф I explained to her that her friend Josh is there because his body doesnТt work anymore. She responded, УOh, that so nice, Е I can go there too, weТll be with Jesus, IТm not afraidЕ.Ф Then she went on to ask questions wondering how Jesus gets back up to heaven when he come down to visit. She thought maybe like an air plane, or a rocket, or maybe like a tree. She liked the idea of it being like a tree.

Tuesday, April 5, 2005 6:34 AM CDT

4-5-05

Jessica woke up in pain yesterday morning and was rather feisty about it. She was combative and refused to put on her clothes. We wrapped her up in her blankie and took off to Omaha for our appointment. The pain meds kicked in at about Ashland and she all of a sudden realized that she didnТt have any clothes on. She tolerated that reality fairly well and was quite glad to get dressed in front on the Lied Transplant Center.

She was quite hungry and feisty from that also. She couldnТt have anything to eat or drink because she was scheduled to have sedation for the Bone Marrow Testing. While waiting to have the Bone Marrow Tests done, we entertained her with paper, scissors, and tape. TAPE Ц thatТs her thing. We have to buy it in the multi paks. We showed her how to make cones out of paper circles. That really got her brain going and she just loved it. I had asked the docs to not explain to her much because she gets so upset about the idea of them making her go to sleep. I think she must equate that with us telling her she needs to take a nap and it makes no sense to her to take a nap there. I just tell here that they are going to work with her tubbies and let her play or sing or distract her with something Ц like tape. The docs went with the theme and just worked in the background getting her ready for sedation without saying much to her. If they would have tried, IТm sure she would have given them heck. They went ahead and started the sedation while she was making another cone. All of a sudden, she says, "IТm feeling wrinkley.Ф. One doc was ready and got the scissors from her hand, one held her back and away she went, into lala land. When we know the result, it will help us make realistic decisions about what other things we can do for her.

She woke up feisty and hungry. We went to the cafeteria and she was just not happy with the shape of the crackers. She threw crackers everywhere. A lot of that was the effects of coming out of sedation. After she got her own mind back, she was back to her wonderful self again and enjoyed Sprite and the variety of crackers we had to try to appease her.

Today we go for a Pain Specialist consult as recommended by her Oncologist. I think this is a wise move from her Oncologist. The cancer can be so painful. Having her in pain causes extreme combative behavior and sleep deprivation for all in the house. BUT, just putting her on a really strong pain med might not be the best, because it could make her just sleep all the time. We want her to be able to be a kid and have fun as much as she can. So, IТm looking forward to this consult.

Ardena is busy at school and excited about doing a science project with her friend Katie. Looks like weТll be building a worm farm. OH, BOY! Just what I always wanted to do! Actually, it looks kind of fun. I just hope we can keep the farm in a place where it doesnТt stink up the place too much. IТll have to find out from the teacher if this is something we need to do at home Ц or if we just send the supplies and they make it at school.

4-3-05
We went to meet Mandi, the buffalo yesterday. Jessica didnТt want much to do with Mandi, but did have great fun on the play set and ride toys. Ardena enjoyed Mandi Ц sat on her, petted her, helped pull some of her winter coat out. Tim and I enjoyed her also. ItТs really something being THAT CLOSE to a buffalo! Mandi grew up with her owner and she came to great us as we entered the pasture. As her owner petted her, she bent her head around and actually looked like she was giving him a hug. I was amazed at the personality that she has and it felt like she has a great gentle spirit. Her owner warned us though that Mandi has a funny bone and likes to poke people with her one long horn when they arenТt expecting it. So he so wisely directs people to stand on the side where she has a short horn.

Jessica woke at 4:30 this morning with pain and low grade fever. IТm pretty sure itТs tumor fever. When she saw that I was going to take her temp she got upset and begged me not to call the doctor and begged me not to take her to the hospital. She just wanted me to be with her and tickle her. Her pain medicine worked fairly quickly and she was able to get some more sleep.

When the girls woke up, Ardena stayed with Jessica and tickled her to help her feel better. IТm so proud of Ardena and how understanding she is trying to be. There are times when itТs hard for her and her feelings are hurt, but she really tries.

Friday, April 1, 2005 10:02 PM CST

JESSICA
Gender: Female
Origin: Hebrew
Meaning: God's Grace

We are back home in Lincoln now. On our way back we enjoyed a lunch with Grandma Jeanne, Great Grandpa Tater, Great Grandma Reba, Aunt Betty, Lois, Doris, and Mary. I just love the way Jessica lights up and gets energized when she sees Grandma Jeanne.

Jessica and I have enjoyed play dates in the morning for three days this week. She really likes trains and trucks and racecars, so she has been thrilled that two of the play dates have been with her male friends. We have also enjoyed a trip to the Library where they have a craft table. She made what she calls a log with bugs on it. Yesterday her play date was with Ella. The church a few blocks away allowed us to use their play room and gym to go push around baby carriages and kick some balls. The girls had a blast. I am so thankful for the friendships that I have with these mommies.

The girls play with Logan and Sidney as much as they could before supper every night that they can.

Also this week, Uncle Brian had supper with us and played with the girls after helping us with some home maintenance. Another day, Jessica enjoyed taking nap with Aunt Carol.
We shared supper with Uncle Brian, Aunt Carol and Uncle John, Cousin Emily, and life-long family friend, Kevin Rose. The girls had a blast playing princess and asking the Daddys, Kevin, and Aunt Carol to be their Princes.

Before bedtime Jessica requests that Tim play his guitar and sing for her. Yawey, We Know You Are Near, Jesus Loves Me, Michael Row Your Boat Ashore, Row Row Row Your Boat, Love of Jesus in My Heart, and Sneaky Snake. Last night she said she had decided to name her blankie УSneaky SnakeФ. But, this morning she says itТs just УblankieФ. She woke up this morning requesting to sing Sneaky Snake and has been singing it all day.

Most of the time she is just happy to be playing. She is feeling good for periods of time during the day. She has episodes of being clingy and wanting lots of cuddle time and tickle time. She has been sleeping good, but some nights she has trouble. She is starting to state that she has leg pain and knee pain. Also arm pain. She is having some of the skin problems that she had before starting chemo. This cancer mimics other disorders Ц such as what seems to be a dermatitis or an orthopedic issue. That is why it is so often so advanced with it is found. She sometimes acts like her abdomen is uncomfortable and wants to be carried a lot and acts like she is being extra careful with her knees when going down steps. The night before last night she cried out a lot. I finally gave her some stronger pain med and she was able to sleep well from 4 a.m. to 9 a.m. She woke up from her nap yesterday with leg pain so bad that she was combative and not thinking straight. Tim and I may need to see the eye doctor because she gets some good kicks in to the face if we are not careful. The pain meds do work for her and then she is able to enjoy herself again. I do hope the doc can recommend a pain med that lasts longer to help her through the night. Now she wakes up at about 3 A.M. crying needing more. I'm going to have to keep up with the meds on a regular schedule and not let them wear off before the next dose - she gets so uncomfortable and demanding and cries. As long as I keep up with them, she feels good.

I've been having better days and not crying so much. I'm thankful for that because then I can enjoy the girls. Also, it's too confusing for them to have Mommy bursting into tears all the time. So I'm glad they do not have to see that so much. I'm finding myself more at peace with what we are facing.

-Toni

Saturday, March 26, 2005 7:02 PM CST

The good news:

Jessica has been feeling real good. Counts good. The girls got to spend last Saturday playing at Cousin Emily's house. They had a blast and played hard all day.

Grandma Jeanne came down again and Jessica was again SSSOOOOOoooooo happy. Her favorite thing is to go snuggle with Grandma to help Grandma wake up in the morning.

Jessica's counts have been so good that we were told by her doctor that we could travel with her again as long as we could get her to a hospital if she got a fever.

We have not traveled to see anyone for over a year! We met up with Grandpa Bruce and had supper with him. The girls are so proud of the mechanical pencils that he gave them. It was so neat to see the birds in the fields and to actually get to see the stars in the night sky. We then continued our travel up to Tim's parent's. Can you believe it's like Alaska here? We actually had a little trouble getting through the snow drifts getting into the yard.

Ardena made sure to leave a letter to the Easter Bunny on our front door directing the Easter Bunny to drop stuff off for her and Jessica at Grandma Flossie's and Grandpa Delmer's.

The girls are having a great time playing with all the toys here. Jessica is very impressed that these are the same toys that Tim played with when he was just a little boy.

She was also impressed with her walk outside yesterday morning in the snow. When they came in I asked her if she had a good time on her walk. Very enthusiastically she told me, "Yes! I made foot prints in the snow and found some cow poop and Dad stepped in it with his cool boots!" She was impressed that her Dad had rubber boots that could go on right over his shoes and then you could step in stuff! Folks, this was fresh cow poop, and this kid was impressed with the squish of it.

We have baby calves all over the place and the girls are thrilled that Uncle Tony is going to tag three calves. One tag will have an "A" on it for Ardena, one will have a "J" on it for Jessica, and one will have an "S" on it for Sam. Ardena was concerned about what to name the calves and thought they would need to find out if they were boys or girls. Jessica decided that it didn't matter to her, she was going to name her calf "Jessica". Ardena plans to name her calf "Logan" if a boy, and "Angel" if a girl.

Ardena loves doing chores with Grandma. Feeding the cats and dogs is her favorite thing to go do with Grandma. Today she even helped Grandma bring a cow in to find her new calf. Somehow the cow got out of the stall and couldn't find her way back.

Another thrill was making Easter Eggs. This is something that we have not done yet in our home in Lincoln because Tim gets nauseated at the smell of hard boiled eggs or deviled eggs. So the girls got to color Easter Eggs. They dropped 8 of the first 12 boiled. So we had to boil more. After that they learned how to handle them pretty good. They also got to see how to crack and peel a hard boiled egg for the first time. And they even tried to eat it the way we were showing them - just sprinkled with salt and take a bite. Grandma and I had our fill of hard boiled eggs today. Tim was out of the house, so we could get away with it. The dye kit was for speckled sponge-on color. We have dye all over the place.

Jessica is thrilled that she will get to go to church on Easter with Grandma Flossie. Both girls are excited that we get to go to church as a whole family again and are requesting that we get to go every Sunday together.

Today we are all excited to see Uncle Tony, Aunt Amy, and Cousin Sam. They treated us to Uncle Tony's famous waffles. They smelled and tasted wonderful. Jessica picked a black calf with a white face with black circles around it's eyes. The kids have been having fun inside racing cars down the hall, reading books, writing love letters, playing Pig Mania, and playing with the Jack in the Box. Outside we have been having fun walking through the deep snow, tagging and naming their calves. Ardena's is named "Angel", Jessica's is named "Jessica", and Sam's is named "Spagetti". Tim and Jessica found a great big pile of fresh cow poop this morning. Jessica so wisely told Tim, "You don't want to step in that one, you need to look for a flat one."

The news that is not good:

Last Saturday, Tim and I were discussing my contemplation of the significance and meaning of Jessica's dream about Jesus. It is my deepest wish that His visit was a healing visit. I also considered that the purpose of His visit was so that Jessica would know Him and not be afraid. Tim and I find it interesting that from the time Jessica was old enough to tell us about her dreams that she would say often that she had a dream about Jesus.

Tim and I feel very privileged that God trusted us to be Mommy and Daddy to Ardena and Jessica. It has been our greatest joy to bring these two beautiful children into the world and to care for them and to help them grow in God's love.

Our family needs lots of prayers right now. We need prayers for grace, love, strength, and peace. We pray that the time Jessica has left with us is as happy and joyful as can be.

Jessica had a scan on Friday and one on Wednesday. We were told the results on Wednesday, March 23, 2005. Both scans showed that the cancer has come back and in multiple places. Her doctor tells us that with relapsed High-Risk Neuroblastoma, it is not good. Not good at all. That she relapsed so soon and so extensively while taking the medicine that is supposed to give her a better outcome shows how aggressive her tumor is. We will be discussing options with her doctor.

Our goals are to have her able to be as much of a regular kid as she can, to feel the best that she can, to be together as a family as much as we can, to have Ardena and Jessica be sisters as much as they can, to have her play as much as she can, and to have her experience our love as much as she can.

How are we doing?

We are thankful that Jessica feels pretty good right now. We are thankful that we are getting to spend time with family.

I am thankful that Grandma Jeanne was with Jessica and me on Wednesday when the scan was done and we found out the results. I had called Mom and asked her to come back to Lincoln because I was feeling like I needed my Mommy. The worry over the upcoming scans had me quite emotional.

It feels unreal. She feels so good right now. She is so beautiful and full of joy. We were concerned about some things with her crying at night and her other reports of pain, but we kept thinking it might be side effects from the medicine she was taking. We worried that it could be relapse, but were hopeful because she had responded so well to all the treatment. I keep thinking there must be a mistake. But I saw the scan, so I know.

Every kiss feels sweeter. Every hug more precious. Every giggle. Every time I smell her hair. Every time I hug Ardena. Every time I see them enjoying being sisters. It's all amplified.

Ardena is worried that she sees her Mommy crying so much. We have shared with Ardena what is going on at a level we feel she can understand. She knows that Jessica might have some days where she does not feel good, that we will help her feel good as much as we can, that we will be there for Ardena as much as we can, that we love them both very much. I've had discussion with both of them how people cry for different reasons. People cry when they are praying real hard. People cry when they are tired, mad, sad, upset have, when something on their body hurts, and even when they are happy. I am so proud of Ardena. She is being the best Big Sister that anyone could ask for. She is being very patient when Jessica is grumpy and when she is being a typical three-year-old. She worries that Jessica might mean it when she says things that hurt her feelings. I've explained to her that kids and adults both say things that they don't really mean when they don't feel good. And that kids just say things. I've told her she can talk to us about anything and ask about anything.

Jessica is worried when she sees me cry also. I tell her that I'm o.k., that I'm just praying so hard that I start to cry. I haven't been able to figure out how to tell Jessica what is going on. I'm not sure that I can. She told her Uncle Tony today that she has a sick and that she goes to the hospital so the doctor can help her feel better. It seems that she understands quite a bit. Maybe we don't have to explain any more to her. Her main concerns are that she wants to go to church as a family, she wants to drive the little cars at Russ's Market on Washington Street and go get mini muffins, she wants to eat Braeburn Apples "with the crust off", she wants to ride in her "Barbie Beach", she wants to dance, she wants to sing, she wants to play outside, she wants to play every where, she wants us to read books to her. She told me on Wednesday when we were at the hospital that she wishes she was a regular Jessica with regular hair and no tubbies. She wants to be tickled. She says tickle me, tickle my foot, tickle my arm, tickle my leg, tickle my back, tickle my tummy. This means that she wants us to use our finger tips to lightly rub her skin. This is very comforting to her. This is our beautiful Jessica.

Saturday, March 19, 2005 5:09 PM CST

One of our favorite morning routines is to hug and love a bit before getting out of bed. The kids come in to our room and snuggle for a bit. We say to the girls УGood MorningФ They respond УGood Morning.Ф. We ask, УDid you sleep good?Ф. They usually give the affirmative. We ask, УDid you have any dreams?Ф. They say whether or not they did. We did this again today.

Ardena said that she dreamed about talking with a bird and that she was supposed to put all the eggs in the right place.

Jessica told us that she dreamed about Jesus. That Jesus and she were hugging and hugging and He told her that He loves her and she told Him that she loves Him very much. Jessica says that Jesus smells good, like a cookie.

Wednesday, March 16, 2005 11:09 PM CST

Good news first:

When Jessica is feeling fine, she is happy and playful and singing and joking. It gets pretty silly at times when the girls get their funny bones going. Last night I had a slip of the tongue and was telling the girls that Jessica used to love a certain song that Grandma and I sang to her when she was a baby in the hospital. They asked УGrandma Who?Ф and I slipped and said УGrandma JesusФ. They thought that was so funny that they laughed on it for an hour and are still bringing it up to get more jokes out of it.

Jessica has major plans to drive her Barbie Jeep soon since the weather is getting better. ItТs funny, she still calls it her УBarbie BeachФ. We had the battery charging today and were planning to have a car wash today, but by the time we got home it was too cold. So our plan for tomorrow is the car wash. When we were getting ready for bed tonight she told me that she plans to sing a song while she is washing her УBeachФ. She says, УYou, know, like the way Barnie sings songs when they are doing thingsЕФ Then she came up with some words that she thought would make a good song for it.

News that isnТt necessarily bad, but just the reality of what we are going through:

The upcoming scans are making my worry level go up a great deal. Also, Jessica had several nights of crying most of the night with tummy pain, so the sleep deprivation causes me to be emotional also. I am so thankful that I have family and friends that I can turn to when IТm feeling overwhelmed and like I need extra support and help and lots of prayers.

The Oncology Nurse tells me that it is very normal for parents to get higher levels or worry when scans are coming. Also itТs normal to worry more when the medical approaches seem less "high scienceФ. I was thinking about last year when she was getting all the Уbig gunФ chemo and surgery and transplant and radiation Ц it felt like we were really armed well to beat this monster. Now we are home and taking a few pills for a few days every month and trying to eat better. I know these things are important, but IТm left feeling like we are fighting a giant with a slingshot. I guess that worked before for one little person, so I will have to keep praying and remain hopeful and trust in God.

Please pray for good weather and good scans. I could use some prayers for strength and confidence.

Thanks for checking in on us.

God Bless You.

--Toni

Monday, March 7, 2005 2:25 PM CST

February 28 was the one year anniversary of the tumor being found in Jessica. I'm still stunned with all that Jessica and we have been through since that day that our lives were turned upside down. I'm even more stunned to think that many, many more families are going through the same thing, still going through it, or just starting to go through it. Please pray for strength and hope for all of those families.

For our journey in this at this point, we are trying to just live our lives the best we can. I'm mostly trying to keep up better with the kids and Tim and cats and home. IТm wanting to be involved more in our church, school, and with the other moms and friends. Tim is trying to keep up with his commitments to God, his family and his work. Ardena is doing well in school and loves having her mom and sister at home again. She is looking forward to being in a Passion Play for school. Jessica is doing a good job of being the bright, funny, independent, loving, wonderful child that she is.

Our cat is feeling better, but that means that he has the energy to fight getting his pills. AND that means that I have some nasty cuts and sores on my fingers from his teeth. He's not trying to bite me, but he yanks his head to the side and the teeth are so sharp that they just get me. I went to the vet today and got a thing called a "piller". IТm also now using a leather glove on the hand that I hold his jaws with. If we do not have better luck with that we will go to a liquid med. HeТs also spitting some of the meds up, so we may have to go with another med anyway. IТm having to hot pack my hand to try to get my cuts and pokes to heal.

I'm trying to do more with friends. We still have to be careful with Jessica being around crowds, so still a bit isolated. However, with the nice weather, we've been able to enjoy some time at the park and nature center. Kid's favorite think to do out at Pioneers Park is to go across the suspension bridge. Nurse at Onco Clinic says that small play dates with people we know who we know are not ill will be o.k. at this point. IТm feeling more confident with making plans like that.

Grandma Jeanne is here again and Jessica is absolutely thrilled. IТm so thankful for all that mom has done to help us and support us.

Jessica has had a few issues lately. Last Friday morning she woke up with the NG tube pulled out. It seemed like she must have itched and scratched it out during her sleep. The local hospital did not have the kind of tube that the UNMC GI people recommend, so we had to make a trip to Omaha on Saturday to have it replaced. Then she developed problems passing stool. She was having several severe crying episodes. It's so heart breaking to see her in so much pain. We are working with her pediatrician to address this stool issue. She has had sporadic complaints of right let pain. Also foot pain. Also tummy pain. Also dry skin. ItТs hard to tell what these issues might mean. It could be the Accutane or it could be something that the thought of makes my heart feel like it is stopped. Please pray that she remains cancer free. We have now started Cycle 3 of the Accutane treatments. There are side effects with that, so we need to keep up well with putting Vitamine E oil on her skin and have added in artificial tears to help her eyes not be so dry. But when these issues are not bothering her, she is having a good time and is happy.

A few SundayТs ago, we met Joe and Joyce Zulovich and their family. Joyce and I have been communicating over the internet about our daughters. We were introduced through one of Tim's coworkers who is Joyce's cousin. Thank you, John. Their little girl is same age as Jessica and is also a cancer survivor. They were near Lincoln to see family and invited us to join them. It was such a pleasure to visit with them and their family. Also fun to see the kids get to play with some new friends.

Thank you for checking in on us. God Bless you.

Toni

Wednesday, February 23, 2005 6:59 PM CST

Things are going good for the most part.

Jessica is fine. Did well with appointment today. Counts look good. Her weight has stabilized. At first I thought the NG tube was not necessary, but now am convinced that it is what she needed. I can tell she feels much better now. She can focus better and her interactions are more calm. Also her play quality seem of richer quality. She is still eating on her own during the day. I think the difference is because with the NG feeds, she is getting good balanced nutrition. So, seems like the doctor and all made a good call. With everything stable, they tell we are not needed in the clinic again for a month!!

BUT, as I'm writing this I just remembered that we might be due for scans. So I won't be suprised if we get a call saying that we need to be up there sooner. I'll send them a note or leave a message to check about it so that it's not a big rush to get it all scheduled.

Jessica is telling me that she misses Grandma Jeanne.

The member in our family who is not doing so well is one of our cats. He seems to have a UTI. He has lost weight. We are having to keep him in his own room to monitor him, so he's pretty lonely. I sure hope he gets better. He's such a wonderful cat.

Thanks for checking in on us.

-Toni

Saturday, February 19, 2005 10:14 AM CST

Enjoy some new Photos.

--Toni

Thursday, February 17, 2005 9:20 AM CST

Jessica's grump about the tube in her nose lifted a bit when she realized I could put her liquid medicine in it and she didn't have to taste it.

She also was pleased when she tried to drink and it didn't hurt. She was then willing to even try to eat. She did a little bit.

I feel quite clumsy with this. The tube leaked last night, so we had soaked clothes. Good thing we had a pad on the bed. Also, the tube got kinked and the alarm woke Tim and I up at 3:30 AM.

Then the cats decided to play drum roll on the side of our box springs after that. I didn't get much sleep because of other things on my mind too.

Thanks for checking in on us.

Please continue to pray for all families dealing with situations like these.

-Toni

Wednesday, February 16, 2005 5:55 PM CST

Jessica's weight loss showed on the UNMC scale too. I was hoping that maybe the scale at St. E's was just wrong. Nope.

Doc and all still thought it best idea even in light of the issues I raised.

It's in and we are home. Jessica is not happy. For some reason she seems to be blaming Grandma Jeanne for it.

I'm trying to help her cope with it by explaining that Dr. Gordon thought the tube is needed to help her numbers get better. I'm praising her for all the good eating she is going and saying that the tube is just to help the numbers get better and to help get the cancer to go away. I'm telling her that the cancer is still like a Skooby Doo Mystery that Dr. Gordon is trying to figure out.

Jessica's spirits have lifted a bit since Ardena is home from school. I'm hoping she will try to eat some supper. She refused lunch. The tube makes her feel a bit gaggy and she is afraid eating will hurt.

I'm fairly emotional about it. I was hoping that she could experience being more like a normal kid. This definitely seems to make her feel NOT normal.

Please pray that this goes well.

--Toni

Tuesday, February 15, 2005 9:24 PM CST

We have an appointment with the doctor at UNMC tomorrow. There is concern from all on the team about JessicaТs continued weight loss. From phone conversations yesterday and today, they have decided that she needs to have the NG tube. She going at about a pound loss per week.

I know that she is not eating as much as she should. BUT itТs still hard for me to accept that they want to do the NG tube. IТve seen her make so many improvements: nausea resolved, can swallow now, is able to eat more of a variety. BUT still I see that she is not eating enough and that rate of loss is quite a high rate.

I was all for it before Ц when she couldnТt even swallow, it was something that I thought would be good. And I suppose I still think that maybe itТs what she needs. ItТs just hard. She looks good and feels good. Still having trouble with constipation. BUT for the most part doing really good.

I kind of wonder though if the weight she is loosing is weight that she wasnТt supposed to have in the first place. There was the point after transplant where she was gaining about a pound a week and it was discovered that the calories in the TPN were set too high. I wonder where her weight would be if the extra calories hadnТt beefed her up. It would be hard to calculate that with a growing kid. She is quite a bit taller now, so I would suppose that her weight should be up a bit.

I also have some fears about the NG tube. Worrying about it's proper placement. If it gets in wrong it can run into the lung. I'm also worrying that if it's run at night that she might vomit and I won't be awake to hear her and help her. I have raised this issue with the team and will see what the decision will be tomorrow.

I do have to admit that she really isnТt eating enough. She really tries and she is sitting down and having meals. She takes bite after bite. But when the meal is done, she just hasn't consumed many calories. Maybe the NG tube feeding will help her handle more volume and help condition her bowel muscles better and help get things moving through better. I suppose it would help her absorb the Accutane better too.

Please pray that God guides us all in knowing what to do and having peace about it. Please pray that we will find the skills necessary to help Jessica adjust to having this placed if that is what is decided.

Other than this issue, we have been having a nice time. The girls loved celebrating Valentine's Day. Tim did a very nice job of making sure all of his women feel very loved. Ardena got so caught up in the celebration that she gave thanks, "Thank you, Lord! I AM having a wonderful Valentine's Day!" Jessica was so wrapped up in it that she just hugged and hugged and kissed. I must say that Tim does a great job of having us all feel very loved every day.

Grandma Jeanne arrived this morning and Jessica has been best buddies with her all day. AND Grandma Jeanne loves every minute of it.

I went to MOMs group today. I really needed that.

Tonight's supper was really fun. It was something simple. Hamburger Helper Stroganof with corn from Aunt Carol's puttin up corn last year, and of course I made Blueberry Salad AGAIN (Tim still not complaining) - but desert got things hopping. Fresh Strawberries with sugar sauce. Tim goes wild. The girls go wild. Ardena decided that she would like to camp out at the strawberry patch sometime this summer. She'd like to sleep in a tent right next to the patch. We don't have a strawberry patch in our yard. She's thinking the Berry Farm South of town. She remembers fondly the trip to the berry farm that Cousin Jody and she took last summer.

Thank you all for checking in on us. I hope all is going well with all of you.

-Toni

Thursday, February 10, 2005 3:05 PM CST

We are doing better.

JessicaТs fever has lifted and she is feeling good. Still, her eating is not so good. She has lost more weight.

Her issues now seem different. Before, she had a lot of nausea and trouble swallowing. Since getting off of TPN and on Reglan, her nausea is gone and she is doing better with swallowing. She is even trying more variety and she is really trying. Now it seems she just is not eating as much as she needs to. Sometimes after eating she complains of tummy pain. I wonder if she canТt handle much volume. IТm sure that whatever bug got her last weekend has dented her appetite. IТm hopeful that her appetite will return. Doc wants to evaluate in a week.

We are almost done with her second cycle of Accutane. Her skin this time is doing much better. Mixing vitamin E cap with Aquaphore and applying to lips, face, chin, ears seems to really help.

Snow and cold keep us feeling cooped up. With her counts better, we can do some low crowd activities as long as we are not around obviously ill people and she wears a mask. We went to the library today. ItТs so nice having a library so close to our house. Also, she enjoys their arts and crafts table. They also have kid books on computer that she really enjoys.

Thanks for checking in on us.

Toni

Sunday, February 6, 2005 1:31 PM CST

Friday at about 11 PM, Jessica started crying in her sleep. She seemed mad and just wanted to go back to sleep, but what ever it was that was making her uncomfortable just kept waking her up. Finally she told me that her tummy hurt.

It's times like those that I can't sleep anyway. For some reason I feel like I need to watch her try to sleep and watch and listen for when she starts to cry to see if it gives me a clue to what is going on with her. So, I offered her a slumber party with me in the living room. We got out the hide a bed and made the best of it. She kept crying out most of the night. But there were some parts where we got a little sleep. I thought maybe the Accutane was making her tummy hurt, so I got her to drink a little more water. Then I gave her some more Zantac, thinking if it was heart burn, that would help. I was wondering if the popcorn she ate might have given her a tummy ache. Well, nothing helped much and when we woke up this morning she had a fever. I don't think popcorn would give a fever - but who knows.

So, we called the doctor and got a ticket to UNMC 24 hour Oncology Clinic for evaluation. Jessica protested, begging to stay home and be with her family.

Doc did the counts, chemistries, and cultures. Also checked her pancreatic enzyme levels. Good news is that her counts are looking good. ANC of 2600. Plateletes 91,000. Hemoglobin above 10. Chemistries showed a little dehydration. We were there all day. She looked like she did not feel well at all. Slept and played just a little. Doc gave her some more hydration and a one dose I.V. antibiotic. Her temp stayed with her and went up a bit after the antibiotics. Doc ordered extra hydration to give at home. With her ANC at that level, she doesn't require immediate hospitalization. Gave Tylenol and headed for home. Tylenol helps her feel better, but fever returns when it wears off. Not eating much, but trying. This afternoon, again says her tummy hurts. Seems to feel fine when fever controlled. Reported to doc at noon how she is doing. He says we can continue to treat from home and call again tomorrow. We will check labs again tomorrow too.

IТm worried, but I think that this may be more of a typical kid thing, typical bug she is dealing with. On the way to Omaha I noted a cough starting and some runny nose. So maybe that is what the fever is trying to deal with. I donТt quite get how her tummy pain figures in, but we will continue to watch her. Maybe that is the Accutane. Who knows.

On the way home from Omaha we had to stop for gas. The pump was very slow. We just listened to Johnny Cash and waited to hear the pump shut off. Well, it was taking too long. I looked back and the price was way up there. Higher than I've ever needed to fill the tank. So I got out and found that the automatic shut off didn't work and gas was spilling out everywhere. What a mess!!!!!!! I called into the attendant and asked if someone could come out to help because I did not want to have to walk in the gas. They were very helpful and even adjusted the charge so that it reflected what I would typically have filled up with. That was very nice of them.

So that is what Jessica and I did yesterday.

Tim and Ardena stayed home and Tim worked on Taxes. Ardena thought that he had been on the computer for too long and told him that he shouldn't be on it for that long. She said that was the First Commandment - I am the Lord thy God and you should not have a computer for a god. You should not have money for a god.

For the main part of the week we had some really nice days. We enjoyed the mild weather and got outside for some walks. Also got to play on the play set in our backyard. On Friday night, Ardena and I went to the Fun Night at her school. That was nice to get to mingle with that bunch.

Thanks for checking in on us. Please continue to pray for Jessica's health and for all families, kids, and siblings facing this kind of challenge.

-Toni

Monday, January 31, 2005 10:45 PM CST

Weather not bad. Eating is still improving. Cat is getting bald spots. HmmmЕ..

IТm still doing o.k. with making things that smell good. Yesterday I tried again to replicate Aunt BetteТs Stickey Beans. They turned out pretty good. Jessica is feeling more confident with her eating, so she tried them without protest or worry. Last night she tried Cole Slaw. I can tell that the texture feels a little odd to her, but she got it down. She is also learning to wash stuff down with a sip of milk. She is also trying bread and butter as long as I cut it into small pieces. IТm sure the skin in her mouth still feels a little odd from having all of it come off during transplant. I also found on the internet information about a cookbook for foods that are easy to swallow. If I can find some time, I'll check that out.

Haagan Dazs has about double the calories and double the fat. Of course, Ardena wanted her own special little tub too. She has a nose for gourmet things. So we got a Chocolate Tub and a Vanilla Tub. The girls love it. There must be something in it that has turned the cat on. She was pestering us the whole time we were eating it and finally gave up on us giving her a lick of ice cream so she went and licked the whole cover of a magazine. That's probably why she is loosing her hair.

Constipation has been reallly bad for Jessica. I think her gut still needs time to get it's tone back. Also, she had problems with this before diagnosis. But the doses of her meds to help were for her age and weight back then. We still need to work out what she needs now. I think it got so bad because I was still giving her the old doses.

Her labs today show a steady girl. ANC still low. I'm not sure what would explain why it's not coming up higher yet. Maybe the ones she is making are busy somewhere taking care of something so that they are not many free in the blood stream to be detected by tests. Maybe they are busy helping her nose scrape heal. So we keep protecting her.

Doc thinks we can do labs in seven days now instead of twice this week. That will free up some of our time and help us away from potential ill people. The flu is in town and I always am worried about how we have to trek through the long walk way and lobby of the hospital to get all the way to the infusion center.

Doc is keeping her on fluids at night to keep things going good. I was hoping that Doc would do that. She is on her second Accutane cycle now and that tends to make a person dry, so it makes me feel a lot better knowing she is getting some extra fluids.

Another example of what a small world it is. Last night at Mass a couple came up to greet Ardena and I. I looked at the gal and asked, "Are you who I think you are?" Yup - it was my Dad's cousins!! It's so funny because we ran into them in Valentine at a restaurant one time too. So nice to see them. Hi, Barb and Mike!

It's so fun when things like this happen. They usually happen mostly to Grandma Jeanne. A few months ago she got pinned in at a gas station near Ashland by a limo. She waited for a while then got up the nerve to knock on the window and ask them to move so she coud get out. Down rolls the window and they said, "No."!!!! It was a guy from back home who recognized her car.

Ardena's troop is done selling cookies. She felt pleased with how she did. She was really glad that we got to go over to Cousin Jody's to sell cookies. I must admit that Tim and I were not up to putting a lot of energy into it. I'm glad that she is pleased with how it went anyway. Now the troop is on to another project with cutting out pictures of healthy foods and making some kind of hanging out of them. I'm so glad that she can be a part of that group. She is disappointed though that I have not been able to go to the meetings yet.

Oh, and this moring - it was one of those times when a parent realizes the kid is too quiet. I was so glad to have some quiet so I could get ready to go this morning. BUT when I went to get Jessica out the door - found her with completely dark blue lips, teeth, tongue, whole mouth, hands, neck, spots on her pants and the couch. She had found a ball point pen and figured out how to get the ink to ooze all over. I will not be surprised if we see blue poop. I almost called poison control, then I thought what could possibly be in the pen that would be worse than all the chemo and radiation and such that she's been through. So I got a wash cloth, put her in the vehicle, and went to get her labs drawn with blue all over the place. By the time we got there, some of it had come off with the wash cloth. Still tonight she has blue on her face and neck. She got a bath, but it just won't come off. I did get it out of the couch and most has come out of her clothes with use of rubbing alcohol. I won't use the rubbing alcohol on her face because it's a little on the dry side so would sting.

So that's what is going on here. Feels close to the typical crazy days that we used to have.

Thanks for checking in on us.

Please add many special prayers for Ardena's teacher. We found out today that her teacher is in the hospital with some very serious issues.

Toni

Friday, January 28, 2005 3:29 PM CST

Keep those prayers for appetite for Jessica coming our way!

I think her doctor may be on to something. She is taking the Reglan well. I've never heard of that before, but from reading up on it, it seems like what she needs.

Her eating is improving. I'm trying some different pasta. Orzo - I thought it would be easy to swallow. She loves it with spagetti sauce on it. Also, the Salisbury Gravy helps the meat go down. She is also requesting macaroni and cheeze - it has to be the boxed kind. I'm loading all of it with as many calories as I can with cream and butter and all of that good stuff. She remains skeptical of some foods, but I'm so glad that she is having some success and enjoying what she is eating.

I also got some ideas about Haagan Das ice cream. Supposedly it's loaded with calories and very good. Jessica will probably like the notion that it's her own little ice cream tub - kind of like she drinks the most milk when it's from her own little Barbie tea pot in her own little Barbie cups. The cups are two ounces each and she drinks from three at a time saying she is having a contest. Sometimes she pretends she is Goldie Locks testing from the tree cups. Today, she at nearly a serving of diced peaches by putting a chunk on the table and sucking it off the table like a dog. Maybe she was pretending to be a cow. It was some kind of non-human eating.

So, maybe it's going to be a bad habit letting her "play" with her food - but for now the goal is to just get it in her. I'll work on the table manners later.

I wanted the house to smell good to stimulate her appetite, so yesterday I boiled a ham bone all afternoon. It seems to be helping her --- but it's getting to me too. Now I have ham bone broth and don't know what to do with it that my whole family will like. I guess I could send it home as a gift to Grandpa Bruce to make some soup.

Jessica took a spill today going into St. E's for labs. It doesn't seem like that bad of a scrape on her right nose bridge, but think the force of the spill caused a nose bleed. Seeing the blood seemed more traumatic to her than the pain of the fall.

Thank you for checking in on us.

Toni

Wednesday, January 26, 2005 7:45 PM CST

The weather today was nice. Cloud cover, so the drive to Omaha was pleasant Ц no sun in the eyes. Sometimes itТs gets so we have head aches from the eye strain.

Jessica still feels great. Her eating has not improved much yet. Her counts look good.

I botched our last bag of TPN last night (intravenous food). I spiked it and then realized that I had the wrong tubing Ц no filter. Then I planned to put the right tubing in, but when I took the spike out, the stuff gushed out all over the table and carpet. Then I tried to stop the gush and then lots of air got in the bag. Then I thought that maybe being exposed to so much air made it not fit for the blood stream, so I called our home health that supplies the TPN, Coram, and found out that indeed I needed to not use that bag. Thankfully I had a left over bag of hydration that we could use.

It worked out o.k. in the end. Today Dr. Gordon decided to just keep her on hydration for a few days with no TPN to see if that will help her appetite kick in. He also added a med called Reglan, so help the food move through her system. He wants to hold off on the NG tube a little longer to give her own system more of a chance.

Sometimes she seems genuinely nauseated. Sometimes it seems she is really gagging. Sometimes it seems like her gagging is a manipulation to not have to eat. Sometimes it seems her gagging is psychological. This is understandable because of all the puking she did with chemo Ц her mind thinks food will make her puke. At lunch today she made a big fuss refusing to try to eat, got upset, started gagging, saying she was going to puke. But then a little while later she tried a bite and thought is was good. But, she only ate two tiny bites. Supper tonight went a little better. Ate Five little bites of Salisbury Steak with gravy and two bites of pasta.

Making Salisbury Steak makes the whole house smell good, so I think that helped with her willingness to try to eat it. I need lots of meal ideas that make the whole house smell good.

IТm getting better in the kitchen. For such a long time, the stress of this all was so much that I could barely make toast. The best I could come up with for supper was a bowl of cereal. Cooking requires a lot of mental skill that we often take for granted. Planning, gathering, time to gather, getting it together in the right way, having time to cook it, the attention span to cook it and not burn it, serving, cleaning, then coming up with something else for the next meal. IТm glad Tim has not complained about how many times IТve made Blueberry Salad in a row. ItТs also getting to be quite the collection of burned pans that we have. We added another one last week. This time it was because I stored a pan in the oven and didnТt tell Tim about it. He needed to cook since we were back in the hospital, so my favorite skillet has broiled handles. I hope I can order new handles. ItТs one of those huge deep Wearever Nonstick Skillets. So handy. IТve kept using it and every once in a while a charred piece of handle chunks off.

Please continue to pray for appetite for Jessica. Also please continue to pray for all children, families, and siblings who are fighting cancer and any severe illness.

Toni

Monday, January 24, 2005 7:25 PM CST

We went to St. E's today for labs. Her counts are coming up a bit. I'm supposing it will be like this count roller coaster for several months. Her immune system and bone marrow is like that of an infant and still needs to build.

Dr. Gordon called today to give his impression of the CT scan. He's not worried. The area that the radiologist spoke about in the last CT was also on the previous CT. It looks to Dr. Gordon like a scar or something from where the tumor was removed. He is not worried at all about it.

Jessica is feeling great! Not eating anything much. She was absolutely thrilled to see Grandma Jeanne. She couldn't get over to the door fast enough and she stumbled over her shoes and landed at Grandma's feet. Then got up and hugged, hugged, hugged!

We will see Dr. Gordon on Wednesday for more labs and for decision on what is best for Jessica in regards for her nutrition and what is best for her whole system.

Take Care All. Enjoy this wonderful weather, that is if you live around here. If you don't live around here, I hope you have some nice weather coming your way.

Toni

Saturday, January 22, 2005 3:08 PM CST

Doc kept Jessica overnight for observation and antibiotics for the fever detected. Once we got to UNMC, no fever registered, but she felt warm and moist and then that night she had sweats while sleeping. Some nasal drainage. She also is now having trouble with constipation. Who would think that it would go to that so quickly? Passing some blood when straining to pass stool at the hospital. Also, her ANC is down again and her hemoglobin is lower than itТs been for a while, platelets still low but a little higher than they were. When awake, she feels quite good Ц so doc sent her home with follow up appointment scheduled with instruction to increase her intake of bananas and applesauce for the constipation. We will try to increase bananas and applesauce, but she isnТt eating much of anything, so IТm not sure she would get enough of it to help. Also, IТm not sure bananas will help with that much. We will also try some other things that have been helpful in the past.

I donТt know what to think. An unexplained fever, night sweats, low hemoglobin makes a cancer momТs alarm bells go off because this is what she had just before she was first diagnosed. But I have to remember that it was just one night. I also have to remember that there could be other things to explain these two events. Ardena has some kind of upper respitory thing going on, so maybe Jessica does too, but with more mild symptoms. Still, with a cancer that has such a high relapse rate, it feels like IТm just holding my breath. I hope and pray that the combination of low platelets, low ANC, low hemoglobin, and constipation do not add up to a huge problem.

Her eating is waning again. It never did really get that good. I was just glad for any little bite that she took. But even when we tried to add up all the little bites, it just didnТt add up to much. Also, it takes about three hours every day just to get 160 cals down. ThatТs for one meal. Then we are going for three meals and two snacks a day. You can guess how much time weТve spent just trying to get what she does eat down. If I give her oral liquid meds, it usually causes her to vomit all that she just ate Ц so then we back slide on any progress. Some parents have written on their web sites how their children on long-term TPN have lost the muscle tone to swallow, lost bowel muscle tone, and lost ability to respond to hunger signals. I wonder if thatТs what we are dealing with for Jessica.

We are home now and everybody is happy.

The girls are pretending to sell Girl Scout cookies. ArdenaТs troop is selling this year and she is practicing the introduction of herself, presenting the product, answering questions, making helpful suggestions, giving them time to make a decision by being quiet for a while, and thanking the person. Oh, and waiting until she is off of their step and back to the sidewalk to ask me if we can go sell at another house. So, Tim and I have been pretending to buy cookies all last night and all morning. Then Uncle Brian brought the boys over today and all played Yahtzee.

At home, Jessica is still happy during the day. No fevers detected. Says tummy hurts at times. I have a feeling thatТs from constipation. Vomits liquid meds and any food she had before we had to give it. Gags sometimes on food she tries to eat. I wish someone could just wave a magic wand and have her systems all working well again. Where is my Fairy Godmother?

Freezing again outside. Was really nice that the last couple of days were warm enough to enjoy being outside. We saw Cousin Emily last week. That was really nice. Jessica was so excited to go play and when we got there said, УHere I am, your Best Cousin!Ф.

I thought that a fun project would be for the girls to decorate their own head boards. I figured that if we bought really nice head boards, they would decorate them anyway - like kids do - so I just thought planning it that way would be fun. Tim made them both head boards and painted them pink and now we get to decide how to decorate them. Both of the girls are so pleased to have princess pink head boards.

So, thatТs what we are up to now.

Thank you all for keeping up on us. Please pray for strength and for healing. Please pray that we can get all these issues addressed and on a good path to get them resolved.

Toni

Thursday, January 20, 2005 6:38 AM CST

We had some really nice days this week. "Blood Counts" looked o.k. Platelets were still low, but holding. ANC 1,800. Eating improving.

No word yet from Dr. Gordon about his view of the CT. Plan was for him to call and discuss on phone since Jessica disrupts the clinic visits so much that the adults can hardly think straight. I'm going to have to work on that with her. Ardena has a hard time with Dr. Visits too. One would think we live in a zoo with the way she fidgets and bounces all over. I wonder if it's nervous energy.

Check up with Dr. Raman went well. He's stressing need to wean off TPN ASAP. We are working on it. Jessica announced that Dr. Raman is her new boyfriend.

Of course my mommy worry barometer was going full blast last night. Not a lot of sleep for me. Vomiting after she went to sleep. Then fever went up this morning. So we are going in to get the usual work up that cancer kids get when they have fevers.

Ardena is very sad this morning because I couldn't assure her that we would be back home today. She has enjoyed having Mom and Jessica home.

Please pray that Jessica recovers quickly from this. Also please continue to pray for all the families and children and siblings who are fighting cancer.

Saturday, January 15, 2005 9:03 AM CST

We are not really that bored. Just a little. Notice I did not request any prayers on the being a little bored. The Almighty might decide to flex his funny bone and come up with a whopper to help me be not bored. Last year I prayed to become better at prayer. Hmmmm. Been quite a year for that.

We'll get better at not feeling so stuck. When Ella and Julie get back in town we'll have to have them over. Also, I need to reconnect with the wonderfuls moms at MOMs group.

With Ardena home during the day for the weekend, Jessica is really happy. I watch in wonder as they play, play, play. It's fun to watch them get into play roles. The favorite is to play dress up in the princess dresses and shoes. Favorite roles right now are from The Princess and The Pauper. Then in a matter of minutes the outfits are changed to ballet dresses and they are dancing around. Then they switch into playing Toni and Tim and call each other "honey" and take care of their babies. Then moments later they are charging through the house back and forth a millions times from the living room to the bedroom. Then it's cart books around in the baby carriers and shopping cart. Then it's get out the box cars and make roads in the carpet with them. Then they line up the big stuffed animals and pillows into an obstacle course and are running through that. Then in gets a little scary because they keep pushing limits with having fun. So, then I have to put the breaks on and remind them that with Jessica's platelets so low, then have to calm down a bit. Of course it's hard for them to calm down too much because we have Tennesse Ernie Ford on the CD player and that makes them want to move, move, move.

Friday, January 14, 2005 2:10 PM CST

ItТs very cold here. It hurts to go outside. The sun is out so Jessica canТt understand why she canТt go play on that wonderful play set that she sees out the window.

Appointment Wednesday resulted in keeping on TPN to see if she continues to improve. Did reduce the calories a little to try to encourage more eating on her own. Holding off on the NG tube because it looks now like she may continue to improve her eating. Please pray that she does. She really looks great right now. Lots of energy. Feeling good.

Dr. Gordon had information about Megace (appetite enhancement) that indicates that it probably should be used as last resort. Seems people were using it on kids, but not much research had been done on it. Well, when someone did finally do research on it they found that nearly all (like all but one) had severe adrenal gland suppression and one subject had severe damage as a result. Nice to know that Dr. Gordon keeps up on these things.

The other thing that was nice about his information about Megace, was that he had a copy for me of the research article he was referring to. Not that I wouldn't have believed him, but I have a brain that wants to know all the whys and what fors - so this saved me hours, I'm sure, of searching for the research myself. I wish I had something like that in print when I was first trying to understand Radiation Therapy.

Dr. Gordon still needs more time to have time to look at the CT scan himself to decide what he thinks about the findings. So no news about that.

Accutane taking continues to go well. The skin issues/side effects are being controlled well. I think that if the dose is tolerated well, we are supposed to try a little higher dose next time. I think the idea is to give the highest tolerated dose. And itТs a big dose. Some kids her weight and height with Neuroblastoma are taking even more.

Health Food store consult resulted in some ideas about dietary fats. Advised to stay away from Cod Oil because of high vitamin A in it. Fish oil or Flax seed oil was suggested. Problem with these is that they come in such large capsules. They would taste awful if out of the cap. I didnТt get to talk with doc about it, but the nurse said they usually think what they eat in foods is enough. So, IТll keep letting her dip in butter and take whole milk before the pills.

She still is not producing her own platelets very well. Was low on Wednesday, but not low enough for a transfusion. Friday still holding, but low. Will have to make sure she doesnТt get too rowdy.

Ardena had an interesting reaction to being told we were going to Omaha for an appointment. The gloom set in on her face and she asked if we were going to be gone for a while. When we told her that we were coming back that day, it was as if she didnТt really trust us. ItТs been hard seeing how this has affected her.

The biggest issue with Jessica and me right now is how we are just stuck in the house. Too cold to take a walk and immune system too fragile to go play at MOMs group. Need to still stay away from crowds. ItТs hard, we are lonely for our friends and a little bored. I think IТll need to invite some of her friends to play.

I do enjoy watching her process the world. She still thinks she has a baby in her tummy. IТm sure this idea is renewed because of Aunt AmyТs news. She was really upset this morning when the cat would not go along with her idea of stuffing him in her shirt and walking around with him as her baby belly.

She is also into asking how to spell things. I also get a kick out of when she is trying to express a thought or question and does not know the exact words for what she is talking about - but she gets her point across very well. She saw a church with a steeple on it and did not know what a steeple was. She wanted to ask me a question about it. Her way of talking about it was to call it Уthe building with the poke pencil on it.Ф

So we are a little lonely and a little bored, but for the most part things feel good right now. ItТs kind of a strange place for me to be. We just went through a very intense treatment for months Ц nearly a year. I think a person gets used to the drama and the suspense and the sleep deprivation and one starts to think that is normal. But then when things do return to a more normal routine, it feels like we are supposed to be doing more.

Monday, January 10, 2005 9:53 PM CST

ItТs a saying that with certain things the whole is more than the sum of its parts. Well, the magic between the girl cousins in this family is more like more than a million times greater than the parts that they are made of. Those girls sure can play and sure can tear up a house in no time flat. Play and dance and dress up and eat and fight and hug and love.

The I.V. meds seems to be helping Jessica. Ears look better. Is feeling better. I do worry though about the c. dif being activated again with the antibiotics. So we are armed with a specimen container and a plan. Jessica saw her pediatrician today to recheck the ears. They are looking better, but now we are dealing with thrush in the mouth Ц most likely from the antibiotics also. Jessica has always been prone to yeast stuff. Her skin is drying out from the Accutane. Yesterday I had a black shirt on and when she hugged me it looked like I had potato flakes all over my shirt. Skin flaking in her ears too. I think the skin feels like it burns. She says she hurts. Have been taking a Vitamine E cap and cutting it open and applying the oil to her face and lips. That seems to work really well. This is recommended in the protocols to help during the Accutane phase. Also started mixing that with some Aquaphore and that works good too. Tried some in her ear area and she said that helped her ears not hurt. Then when I wasnТt looking she got into the Aquaphore and put a whole bunch in her hair. She said her head hurt. I guess I can buy that because the skin on her scalp is flaking off too.

Oh, but good news Ц today we are finally seeing poop. Smells like poop, looks like poop. I know itТs gross to talk about poop, but you have to understand that this is exciting to me because all IТve since the first week in October is liquid stool that basically had no smell at all Ц except when having c. dif. Ц then it smells odd and stings the eyes and nose. So, IТm hopeful that things may really get back to normal. Well, as close to normal as we can get.

IТve looked on the list serve and have some ideas about how the appetite thing and the weaning off TPN can go. Some parents write that their child is on every other night TPN. Others write that their kid is taking a med called Megace to promote appetite. But some say Megace isn't so great. We will ask about these to see what Dr. Gordon thinks will be o.k. to try with Jessica.

With the Accutane being absorbed best when taken with food with fat in it, IТve been wondering how to get more fat in her food Ц esp when she doesnТt eat much at all. I tried adding peanut butter to some rice cereal and thinning it out with milk Ц thinking it would go down like a milk shake. Well, it made her gag and puke. Then we thought to switch back to whole milk. Then I was encouraged that she will eat mozzarella cheese if cut in chunks just the right size. So thatТs what she eats Ц mozzarella cheese and milk. That all that she has eaten for the last three days. Actually, we are thrilled Ц because at least she is eating that. Then Tim thought of getting her a little tub of butter that is blended with canola oil so that it is spreadable. She started out by liking to dip the mozzarella cheese chunks in it. Now she is just putting the butter on her tongue Ц what ever works. IТm wondering if there is a capsule of some sort with dietary oil in it. Since she is swallowing the Accutane pills well, I would think I could just get her to take another capsule that will help get more fat in her. Hmmmmm. I hope the health food stores have such a product.

Speaking of products that help. Daisy Doe and Katie Rose (clowns) have been keeping up on JessicaТs journal. Katie Rose brought over a cup to try with the pill taking. THANK YOU!!! AND Ц you canТt be a clown and not want to drop off some balloons Ц so she brought over a huge pot of balloon flowers that were made with stems, but instead of flowers, there was snowmen on top. WOW Ц instant smile for the kids. They had a ball. THANK YOU!!!! THANK YOU!!!! THANK YOU!!!! Daisy Doe is the clown that came to JessicaТs Make A Wish birthday party. If you are familiar with ValentinoТs Pizza in Lincoln, Daisy Doe and Katie Rose are at the 70th and A ValentinoТs during the family night period. IТm not sure of the nights. They do this to raise money for Research For Cystic Fibrosis Kids. They also do Birthday Parties and other events. See in the Links section for a link to their web site. These ladies are just great and really know how to get a party going and keep it going.

Saturday, January 8, 2005 8:21 PM CST

Before Jessica fell asleep last night one temp registered at 100.1 She was crying out a lot while sleeping. In my worried state, I stayed up and checked her temp until 1 A.M. Temp went down Ц so I tried to sleep. Still not drinking or eating this A.M. and very crabby. Then she went back to sleep. Oncologist thought best for her to be seen at the Pediatricians office.

We go in the back door to avoid potential sick kids. Nice to see those folks again. Well, nice to see them Ц but, not so nice since things are not going so nicely. I think I just tied a knot in my brain trying to write that.

Anyway, Jessica slept until we needed to leave to get there on time. So, she put in a 13 hour sleep last night. Taking Jessica to the doctorТs office is quite the experience. She usually displays no symptoms once she is there. No pain or worry in the world. Dancing all over the place and yelling for attention any time the doc and I were trying to discuss anything. Still not eating. Doc did find both her ears to look really bad. Thought of putting her on oral antibiotic Ц but with her tummy probs, went for I.V. form.

I think both of us were at a blank as to what might work. SheТd been on all kinds on antibiotics last week. One would think one of those would have knocked out an ear infection. Also, if it were virus, seems it should have been taken care of by now. So we got armed with prescriptions and a plan, got Jessica to the car and then she threw up.

Had a hard time at home for a while with not feeling good. Then after a while she took her Accutane pills with a little milk and seemed to feel just fine. I would think that Accutane would make her tummy hurt, but it seems to make her feel better. IТm still not sure why she can keep pills and a little milk down, but cannot keep Sudafed syrup down. Go figure.

Then she worked on the computer all afternoon. She really is amazing at that. Picks up what to do quickly and wants to stay with it for an extended period. I told her that kids who do a great job on the computer are called a "computer wiz". She insisted, "I am NOT a computer wiz, I'm a computer WINNER!". Just before supper she fell asleep. So, I guess we may be up with her late trying to get her to eat a little and take her pills.

Taking the Accutane with a meal and especially with food that has some fat in it is supposed to help it absorb better. Makes me wonder about her not eating much Ц I hope enough is absorbing so that it can do itТs job. I also worry about it causing damage to the digestive system if there is not enough food in there. I'm not sure how we are to manage all these issues well. With gastritis, she is already having tummy probs. I just don't know what to think if a gal bladder issue is in play or if pancreatitis is activated again. I sure hope that next week's appointment with Dr. Gordon results in some better things to try in regards to all of these issues. If having something in the tummy and having fats in the food is the main thing that will help Accutane work and avoid damage, then maybe an nasal gastric tube or some other way to get food in her gut, is best. You hate to have to do that, but if it avoids damage and helps to better prevent relapse, then I'm thinking the best choice may be the NG tube.

I've read on the support list serve that other kids are having these similar probs. One didn't start Accutane until 4 months post transplant because of all the GI probs.

I'm also wondering about trying her off of TPN - only on fluids - to see what that would do for her. My thinking is that if the TPN itself is causing nausea, then getting off of that may help.

Sometimes it feels like there is too much to think about. Too much to worry about. Pray, pray, pray.

While Jessica did her thing, I read the paper and did laundry. Tim fixed the head lamp on the vehicle and then he went to work.

Aunt Carol reports that Ardena got a migraine while bowling, but it seemed to pass quickly after a nap. Appointment yesterday with neurologist resulted in increase in one med. WeТll try another one that has the least potential side effects to try to prevent them from happening. That would be so nice.

So that is a description of our day. IТm glad we are still home.

Friday, January 7, 2005 11:15 PM CST

Well, I thought things were looking up yesterday. The night before last got up after going to bed and wanted something to eat. She ate three big bites of potatoes and butter and six chunks of chicken. Then yesterday, Jessica ate a little all day and drank quite a bit. I was feeling very encouraged. The pill taking continues to go well. We are calling her a "Pill Popping Princess". Good Lord, what have we done? So I'm goofy. It seems that giving a chore a fun name helps her feel proud of her efforts. It's no fun having to do all this, so we have to find some way to have fun.

Today, it started out well, went to lab and then brought her home so I could take Ardena to see the Neurologist about new ideas to help with her migraines. But when I got home, I was told by the Respite worker that Jessica was just waking from a 2.5 hour nap. She usually only naps on her own that early when something is not right. Jessica was cranky, hadn't drank all day, hadn't peed all day. When she yawns, she cries and says her throat hurts. Then tonight she vomited. She is also complaining of her ear hurting and she has runny nose. We did get her pills down her with some milk and then she fell right to sleep. I'm hoping that will keep them down long enough to do their workk. I'll be checking her temp again soon, as I'm thinking it may heading North. So we may be heading East tonight.

Labs resulted in another platelet transfusion. She sure isn't holding on to those very long. The UNMC nurse I talked to on the phone is saying that Dr. Gordon is suspecting this is a radiation effect. The doc who was doing rounds last week said it was a virus affect - but I guess it could be either/both - who knows. I just hope her bone marrow improves and does a better job at making her own. Good thing is that her hemaglobin and ANC were still good. Labs also had potasium high, so needed to toss the TPN in frig and start with new formulation.

Ardena is with Aunt Carol and Emily. Plan is to go to a bowling party. I'm glad she is there because being here sure wouldn't be much fun for her.

Please pray for Camer's family. God gave him his angel wings last night. This is a crazy world. I talked with Camer's mom yesterday and he was in so much pain and the pain meds wouldn't work anymore. Peace be with you, Camer.

I did find out that they couldn't take a trip with Make A Wish because of Camer's quickly deteriorating health, but they did have a small party and got a play set similar to the one Jessica got. I am so glad Make A Wish was able to do this for them.

Please continue to pray for Jessica. Please pray for her doctors to know what tests to run to help find out why she still has problems with eating and nausea and generally not feeling well for long.

Wednesday, January 5, 2005 7:54 PM CST

All day home with the girls. Fun, Fun, Fun.

Ardena is into playing Yahtzee - so she and Grandma Jeanne have been doing that. Jessica and Ardena also played some kind of marble game.

Beads all over the place. Seed beads - I think like 10,000 of them - so you can imagine what the carpet looked like.

After our supper prayer, Ardena added, "Thank you, God, for Jessica". My heart feels so.....so......I don't know the word for it....big....touched....thankful...proud. To have that come from Ardena's heart just meant so much to me.

I have found some info from other parents about their kids with Neuroblastoma - and some of them started this phase of treatment around day 100. I'm feeling more confident now.

The thing with this type of cancer is that it's rare, so you don't meet many with the same. I've met a lot of leukemia kid families. Anyway, it's hard when you feel like you are alone. I had been trying to get into a web site with several list serves, but could never get it to work. I though maybe our computer and the computers at the resource centers were missing a software needed to get in. A week and a half ago I finally figured out that there was two required locations to activate the sign up.

Wednesday, January 5, 2005 10:18 AM CST

We are home.

We drove home last night. The roads were treacherous. Under 40 MPH all the way. Mostly 35 MPH.

We are very thankful for our 4x4. At the Gretna exit, we saw a car come from the on ramp and it immediately spun around and was going backwards on the interstate with the head lights right in our face. Right in front of us - in our lane. Then a van came up besides us and slid sideways - I think because it tried to break for the car. I figured I'd better not break. I just took feet off gas and drove far left on the shoulder and creeped around them, all the time talking to myself - please don't get in my road. It worked. Jessica stayed calm and gave me all the credit. "Wow, mom, you did a great job!". I'm sure that we all know WHO deserves the credit.

After that, I was really charged to see Tim and Ardena. I was so thankful that we made it. I do know that it was not the smartest thing to drive in that kind of weather. So I was so glad when we made it. When we got here, no one was home. They were quite happy playing and watching football at the neighbors. It was quite a let down. It was far different from the loud and rowdy welcomes that we usually get. I guess snow will do that.

When they did get home, the girls went quickly into their wonderful sister mode. Play, Play, Play. School was cancelled, so they get a whole day of Play, Play, Play.

Taking her pills last night did not work too well. The things would not go down and she kept spitting it out and were almost to the desolving point. I finally thought that maybe it was the cup. At the hospital we were using a Thermos drink cup with a spout. Last night we tried with a regular glass. So, we finally got the Thermos - and it worked like a charm. Used the Thermos this morning at it worked like a charm. So, I'm thinking that the spout must put the pill right on the toungue where it needs to be and then the stream that comes out from the spout must help wash it down.

Also to note is that yesterday and today, she did not have any vomiting episodes. Halaboola! With that, I'm hopeful that she will improve her eating and won't have to have the nasal gastric tube.

The thing that is not so great right now with Jessica is that this virus evidently has stressed her new bone marrow so much that her ANC and platelets are down again. We had to give her a shot last night. That was quite upsetting to her. We will see on Thursday if she needs another platelet transfusion.

Please pray for Jessica friend, Cameron. He is in a great deal of pain right now. Please pray for his family as they help him on this journey. I don't think they ever did get to take him on his Make A Wish Trip.

Josh didn't get to go on his Make A Wish Trip either. Haley still is doing well enough to make her trip. What is really wonderful about that girl is that she requested that Make A Wish allow Josh's sister to go with her on her Make A Wish Trip. The Make A Wish held a special meeting and decided to allow it. The story has been in the news recently. Please pray for Haley and Josh's sister and their families.

Please pray for Jessica's continued healing and recovery from this virus. Please pray that the medications to try to keep the cancer from coming back work well. It only helps some of the kids that take it. We are not in the clear yet. I think it takes 5 years of NED for the outcome to look very promissing.

Please continue to donate blood if you can.

Monday, January 3, 2005 6:41 PM CST

Jessica is feeling better still. Change of anti-nausea med induces great naps. Also, helped her keep down some Long John Silver fish. BUT still, most of her meals are just art projects -- she spoons and scoops and mixes and swirls and spills and plops, but not much gets to her mouth or tummy. Stools still liquid. Will stay another day in hospital for sure since her intake is still so low.

We are very thankful that the new insurance coverage has all of our current providers as In-Network. We have found that Coram Health Care is fantastic. They provide the TPN and all the supplies and medications for her central line. St. E's Infusion Center and UNMC are all In-Network. I'm so glad that we don't have to make any changes.

Met with her Oncologist today, Dr. Gordon. It has now been determined that she is not eligible for the clinical study that would give her a chance of getting the monoclonal antibody treatment. I'm not disappointed about this at this time because the last two weeks had me wondering if her body was even strong enough to make it through that very intense treatment with known severe side effects and pain. And remember, we don't know if it even will work any better that what is known to work best now. So now, I am very relieved that we are finally starting her on the next phase of her treatment to try to keep the cancer from returning.

Trying to get a three year old to swallow pills can be a huge challenge. It's best to do it that way so that the medication doesn't get exposed to air. If it gets exposed to air for too long, it does two things: it degrades so that it is not effective against the cancer and it changes into something else that can be toxic. Well, after 20 minutes of coaching Jessica on why it's important to try to swallow the pills whole and listening to her protests (it will help keep the cancer away, then you can be at home more with your family, you won't have to taste it, I'll have to squeeze it onto your togue and it will taste bad if you don't swallow it, just start out by puttin one pill on the end of your tounge, then take your finger and push it back a little bit and then take a swallow of Gatoraide, it's like M&Ms and then will slip right down to your tummy... I can't, I'm afraid of them...) The nurse came in with the pills, she didn't hessitate one bit, took one pill and swallowed it and then the other and swallowed it and that was that. BUT then she is supposed to drink some milk or have some food with the midication, so I had her dring milk. She was complaining that it tasted bad. It turned out that it was sour. I was so afraid it would make her puke. But the antinausea med made her go to sleep fast - so it's been down for about 3 hours. Halabooola!

The medication that she is taking now is Accutane. Yes, that is the medication for acne. BUT in the early 90's it was found out, with clinical trial, that Accuutane helped the 3 year event free survival rate increase considerably. It works, if it works, by down regulating N-Myc Amplification and causing premature death to tumor that tries to form. It does have it's own side effects. Severe sensitivity to sun, sever dry skin, lips, and eyes. Possible rage behavior....She will be on it for two weeks then off for two weeks - for six months.

Accutane is not a medication to mess with. If my read of the medicine is accurate, if Jessica were of child bearing age, she would be required to use two forms of birth control while taking it. So even if she was abstinent, she would be required to take another form of birth control. If I were pregnant, I could not handle the medication - even if I were wearing gloves. Doctors are required to warn of severe side effects such as psychiatric changes and possibly suicide attempts.

Meeting with Dr. Gordon today resulted in plans to have her try to eat again on her own for about a week with her TPN changing to increase fluid to prevent dehydration. Consult with the Pediatric G.I. Doc about the continued liquid stool and nausea. Then if still not doing so well with trying to eat on her own, try a nasal gastric tube for feeding. Dr. Gordon advises that getting something in her gut regularly is the best way to help it start working again - unless of course something else proves to be issue.

Issue with the CT scan finding a small abnormal area on the surface of her liver: Dr. Gordon will look at the scans himself. Nothing was noted before on the liver that I recall. But it is quite possible that if another CT was done, that it wouldn't show up then. Could be a fluke. Was was encouraging was that the liver did not light up with the MIBG. So we will see.

Ardena will go back to school tomorrow if she is over her migraine. She stayed at Cousin Jody's today and ended up getting a migraine. We will meet with her Neurologist on Friday to see about trying a med to prevent the migraines. Right now we are only on meds that try to get them to go away.

Things might seem a little odd at our home for a while- with me and Jessica home mostly taking the medication at home and labs just once a week and planned meets with the doc once a month. We will have to work on being near to normal again. Now we might feel kind of lonely from not having the frequent contact with the many wonderful people we have met here.

Maybe I'll be able to get all the dirty socks out of the toy box. Maybe I'll be able to take the four full sharps containers to get them disposed of properly. Maybe I'll be able to read a book again. Maybe I'll be able to have someone over for coffee. Maybe projects from two or three years ago will finally get done. Maybe I'll be able to sew all the tap dance skirts for the dance troup again. Maybe I'll be able to babysit Ella. Maybe the fish tank will get cleaned. Maybe I'll get to bake some bread. Maybe I'll get to take Ardena swimming at the YMCA. Maybe I'll be able to give Tim a kiss. The possibilies are endless.

Saturday, January 1, 2005 11:37 AM CST

Grandma Jeanne and Grandpa Bruce are here! Jessica very excited to see them.

Jessica has decided that Grandma Jeanne is best at doing the "tickle". When she is not feeling well, she nearly constantly asks to be tickled - which really means that she wants you to rub her arms, legs, and back lightly with your finger tips.

Mood is still improving. Energy is low at times. Color looks off at times.

Doc ordered Neupogen infusion yesterday to help her bone marrow produce white cells. That did work. Yesterday her ANC was 416 - very at risk for infection. Today, after the Neupogen, ANC is 7,000!

BUT todays platelets are even lower, so she will get platelet transfusion today. I don't know of any med that helps platelet production. Her Hemaglobin still looks good. So that is good. Her nausea is worse and she still is not eating or drinking well and is starting a cough. Stool still liquid - and burning bad. SO, this gets her another day and night in the hospital.

I'm starting to worry about how on Earth we will be able to get her to keep down the meds that are the best known, though does not work for all, to prevent her cancer from coming back. They are oral. I'm also wondering if her digestive system will even be able to digest/abosorb it properly. Seems everything just goes right on through. I will address this with the doc on Monday. I'm hoping that an I.V. form of it can be found to use at least until her digestive issues are explored more and hopefully resolved.

Tim and Ardena celebrated New Years Eve with Erin, Barry, Login, and Sydney and Major - their new dog. Tim tells me this morning was kind of funny. For Christmas, Ardena got a big bell alarm clock and she has been trying to figure it out. When Tim got up this morning, Ardena was sitting in her bed - said she was waiting to get up until the alarm clock went off. I hope it wasn't set for 3 PM.

Happy New Year to all.

Thursday, December 30, 2004 6:57 PM CST

Some good news:

Jessica's MIBG scan is also showing no evidence of disease. This is very good news. Making it to day 100 post Stem Cell Transplant without relapse is considered a very good thing. Especially with her tumor histologies and especially since she has had such delays with her treatments.

The news that is not so great:

Her counts are plummeting. AND on it's way below 500. Platelets at 24 and heading south. Stools still liquid. Still no results on urin cultures. Still not eating much. Docs found and unusual virus that they feel may be reason for her respitory symptoms, but it may also be stressing her new bone marrow too much. With her bone marrow and her immune system being considered in such an infantile state, it will have a hard time pumping out the things that it needs to pump out to fight virus and infections. Doc tried her off hydration today, but then the virus was found and then she didn't eat or drink much or void much at all - so she is now back on hydration - as I was a mom who was nervous about it.

I know the reason for cutting back the hydration is to encourage her to eat and drink on her own - but who could expect her too with other illness going on. I think that weaning her off of TPN should be put on hold and just focus on stabilizing her so that she can start the next phase of her treatment.

With these current issues, the next step still cannot be determined. I think though that her body is telling us that there are issues that need to be worked out and that at this point she might not be able to handle a more aggressive treatment.

We will be able to discuss all of this with her Oncologist on Monday.

Her mood continues to perk up. She talks about her Lear Jet ride and just gets so excited. She is referring to Mr. Barr as "Mr. Harry Uncle Barr".

Thursday, December 30, 2004 0:54 AM CST

Jessica is feeling better. Her temp has stayed down now for a day. She is moving around better.

The MIBG scan went well. Do not know the results yet, but the scan experience was very pleasant. As you know I was concerned how it would go because of our experience the last two times with anesthesia scheduling and service for the MIBG scan. This time, the anesthesia scheduling service was very impressive. When we arrived they were all there and set up. It looked like they had a battle ship command center set up with all the monitors and such. Small glitch was that a blood pressure cuff of her size arm was not in the room, but one was located quickly.

From past experience with her coming out of anesthesia, they all knew that she would likely leap off the gurney. The anesthesiologist suggested that I get on the gurney with her because kids usually like to cuddle with their mommies and smell their mommies - thinking this would help us keep her calm while tranporting to the recovery room. I felt a little silly riding the gurney with her, but it worked like a charm. Jessica gave them hell in the recovery room just like the Jessica we have all come to know and love.

Her TPN volume is still cut in half and she is still not eating much. With all the antibiotics, she is getting a very soar rash. Hopefully the anti-fungal cream ordered tonight will bring some releif to that area quickly. AND her stools are still liquid. I just do not know how much longer this should go on without some other kind of approach or investigation.

She is getting lots of I.V. fluid to treat her dehydration. So that has helped a great deal.

Now that she is older, being with her here by myself is a bit easier. She can be left in her room alone. The staff check in on her. The hard part is that in my quick packing I forgot some of the things that make life a lot easier here. Like laundry soap. Like Gaviscon. But we are really getting along great. I looked in the depths of the suite case and did find one packet of Gaviscon. I shouted out with joy. I had a Cuban Pork Mojo Paninni for lunch and it was fabulous, but set something off in my tummy.

Tomorrow is a big day. Finding out results of MIBG. Needing to determine next step in treatment. I wish our regular Oncologist was not on vacation. Seems the start of the next phase should be marked with an appointment with some in depth discussion about what is next and with review of all scans and how to address issues found on those scans. I think the reasons she was hospitalized are being treated well with who is on call, but I know her regular doc was familiarizing himself with what is coming next, so I feel they would be able to better address my questions and concerns and get me best prepared for my role in doing what ever is next.

I feel we are still receiving very good care here. We are not on the Oncology Unit right now, but on the general Pediatrics Unit. The rooms are a bit small. The big difference I'm noticing from when she had the Stem Cell Transplant is that we don't have an 8 Man football team made up of Oncologists and Medical Students and other members of the team coming into the room morning and night. Sometimes it would be several teams a day - depending on what specialty needed to be involved. Each Specialist came with their own group of students. I'm not sure why. Maybe it's the break in the semester. Maybe she is not so interesting of a case now. It's quite peaceful. But it was interesting with the students involved during transplant. Then, it felt like most of the doctors would address questions and issues more in depth because it was a teaching opportunity. Now, they are taking care of business, but not much discussion.

Tuesday, December 28, 2004 4:48 PM CST

Good Stuff First:

The ride on the Lear Jet was fantastic. Jessica said over and over and over "This is so much fun!".

We were treated top notch with Pilot, Co-pilot, Flight Attendant, Runza meal, and desert. When we were enjoying our desert, it seemed like we ought to be over Omaha by then, but when we asked the Pilot, we were informed that we were actualy over Souix Falls, South Dakota! Ardena asked if we were going to fly to China.

Goodie bag had a ball point pen in it and since all the parents were strapped in with our seat belts, we could not get to her in time to stop her from adding her personal touch to the wall of the plane. She explained that she was writing her name. Thankfully we had some alcohol swabs with us that took care of it.

At the end of the flight the guest of honor was presented with flowers and a special key chain. She definitely had a good time. We all did. This was wonderful.

Other good news is that three of the tests done last week are still indicating that she is NED. The MIBG neuclear material arrived today in good shape, so she is still on at this point to have that scan done tomorrow.

Now for news that we don't know what means yet, might be nothing:

There was some issues showing up on the Cat Scan with her intestine and her liver, but what exactly is going on is not clear. Might be affects of Radiation Therapy or Surgery or some other issue that is not showing other clinical signs.

Now for the not so good news:

Yesterday, Jessica continued to look like she just did not feel good. Was not eating or drinking unless we went to great lenths to encourage her. Still could not get much down her. Yesterday evening she got a fever and we are now admitted back at UNMC. Her fever is getting higher, does come down a little with Tylenol. Is sleeping most of the day, looks like she is loosing weight fast. Urin showed lots of issues. Blood and indications of infection. Looks very dehydrated. Maybe upper respitory infection going on too. Docs have her on three different I.V. antibiotics.

Please continue to pray for Jessica.

My mommy worry meter might not know what is going on, but it sure knows something is going on.

Sunday, December 26, 2004 11:33 PM CST

We are having a wonderful time celebrating Christmas with TimТs family and enjoying the kids play with their Cousin Sam. And we have wonderful news about a new cousin on the way. Had a great time having supper with Cousin Jody and her family. Missing my family traditional Christmas-eve celebration with all of my Aunts, Uncles, Cousins, and Grandpa.

But even with all our wonderful family Ц I canТt sleep well because my mommy worry meter is going full blast. My stomach is full of knots.

There have been so many complications and delays that IТm just worried.

We are about 35 days behind ideal. I know this current series of scans and tests are designed to detect any relapse Ц but I keep wondering if something might be missed. Even the current thought in the medical field is that this cancer can lurk undetected. Possibly because the current tests just donТt detect it at itТs most basic levels. Dr. Gordon said last Monday that up to that point, we really wouldnТt have done anything different Ц because of all the complications she had. And Sue Nuss assured me that Dr. Gordon still felt this time line isnТt unheard of, even though not idealЕ.as long as we are still under day 100.

She isnТt drinking much and isnТt eating much. Her last weight showed a 1.5 pound drop in four days. She still has liquid stool, even though she started the medicine for c. dif. IТve been feeding her baby rice cereal by syringe and telling her that itТs medicine just to get her to take it. I thought that might help her form some stool. She starts crying and is saying that her tummy hurts. She thinks itТs a baby it her tummy.

We go in tomorrow for more labs and then if the radioactive material gets here, will get the MIBG injection done on Tues with MIBG done on Wed. If that radioactive material does not come through this time, Dr. Gordon says we just have to start her on CIS Retinoic Acid and forget doing the scans before starting.

It also feels scary that these holidays are right now, so that takes many seasoned and skilled staff away from the hospital. Not just at the doctor and nurses level, but at labs and where they do scans.

IТm wondering about having a PET scan done Ц thinking that might detect more clearly if relapse has occurred. I just read tonight that there was a study that used those to detect Neuroblastoma - but I have to realize that maybe that method isn't standard. I haven't read of any other kids with NB as getting PET scans. IТm wondering if instead of CIS Retinoic Acid Ц maybe a synthetic version that some resources IТm finding are saying works more aggressively. IТm wondering if maintenance chemo for 6 months and then Retinoid Therapy. BUT what feels crazy is that I don't have the answers - I just have a lot of questions.

It is so scary having to just trust that the people taking care of your child know what they are doing. It's the only thing you can do in a situation like this unless, with your limited knowledge, you notice anything glaringly wrong. (That's from Tim - he copes with all this much better that I do.)

ItТs horrible thinking that I might have failed Jessica because of my exhausted and distracted state of mind. But IТm told by many that IТm doing a great job. But itТs this irrational constant what if Е.I should ofЕ. But I feel that we are in good hands with the medical professionals that we have. I have to remember that IТm not the doctor.

This life of having a child with cancer is so crazy. The treatment demands just take over your life. The treatment of this particular cancer is so aggressive and all the side effects and such and we have just been on the run most days since late Feb 04. I wonder how families like ours get on with the other things in life. I worry so much about Ardena and how this is effecting her. And I worry about how this affects Tim. Worry, worry, worry.

Is this what all Cancer Moms go through? I suppose it is. I suppose it will be like this for the next 5 years. ItТs hell. It feels as close to insane as I can take. I see Jessica dance and singing in front of the Christmas tree and I start to cry because I wonder if next year her joyous song will just be an echo in my mind. I need some sleep. I need some hope. I need to be able to enjoy tomorrow and the next day and the next.

And IТm hoping that by the end of the week we will have reassurance that she is still considered NED (No Evidence of Disease) Ц and then this burst of panic worry will be history and IТll have some hope.

Friday, December 24, 2004 2:59 PM CST

Yesterday was an interesting day. It was the first time that Jessica, Ardena, and I spent the whole day together - just us - for Ц if IТm right Ц since March 04. We did have to go to the hospital for labs, but the rest of the day was at home.

The girls play, played, played. I did laundry, did laundry, did laundry.

We also caught up with what is going on in the fish tank. We have a group of albino corydoras who have turned out to be bullies. Ardena calls them the Blubby Hangar Group (Pinky, Tara, Blubby). We also have the second beta. I think itТs name is also Rainbow. Then we have Amy Ц a Plecostomus Ц who Ardena affectionately named after her Aunt Amy Уbecause she is a valued member of the communityФ.

Well, the Blubby Hangar Group Bullies have chased Amy out of her bridge. I wish there was some what that I could stick up for her. We also have a couple of surviving Neon Tetras. ItТs surprising that any of them are still surviving because the other 8 or 10 that we had are all gone. I know our neighbor came over last Spring and cleaned the tank, but it has not been touched since Ц so itТs looking pretty scummy. Tim did change the filter last week, so the water is more clear but itТs still bad. So you are probably wondering if I cleaned the tank. The answer would be NO.

We are very excited to have TimТs family coming to our house for Christmas. We have not seen them in sssooooOOOOooooo long. ItТs not smart for us to travel with Jessica right now, so that is why they are coming here. IТm so excited that we get to see everybody and Cousin Sam. HeТd better like kisses, because that is what Jessica says she plans to do with him.

IТm thinking about them often today as I know they are traveling and IТm praying that they make it safely. IТm really looking forward to Monday with them. We will all accompany Jessica on her private ride on a Lear Jet and eat Runza on the plane.

So, you might be wondering if I feel prepared to host family at our house. I was trying to keep myself calm about this by reminding myself that everybody will understand that IТm just not up to making sure the house is spotless and having gourmet dishes all prepared and ready. I was keeping myself calm by reminding myself that there are several 24 hour stores here, so if we forget something Ц it will be o.k. I was keeping myself calm by reminding myself that if I didnТt have to have it all planned out. We can do it one day at a time and that TimТs mom is great at doing these kind of things, so it will be really nice to have her here to help me do this.

One of my worries was to make sure the turkey was thawed. I heard somewhere that it could take 3 days to thaw a turkey. So I started on Monday and the turkey was completely thawed on Monday. So then I had to figure out what to do with this bird that wonТt fit anywhere. My solution was to put it in a cooler on the back porch. ItТs so cold that it almost refroze. So now for the last few days I have been moving the cooler back and forth from the kitchen to the porch keeping the bird in a semi-frozen state. Actually I feel clever for doing this. Tonight I will bring it in and put ice packs on it and it should be just fine to cook in the morning.

With all of the laundry to do and visits to the hospital for lab and having to keep Jessica from the crowds, and still trying to put away all the stuff that we have packed and unpacked for the last four months, actually for the last 10 months!!!!!, thatТs about all that I have done. I said four months because that's how long it has been since the start of the Stem Cell Transplant Process. I was hoping that with Tim home today, one of us cold fill out the rest of the list so that the Christmas Day breakfast and meal go well. I donТt have the brain lately to plan very well.

And then last night an Angel showed up at our door with all the Christmas Breakfast and Dinner fixings minus the turkey and supper for last night and supper for another time in the next few days. THANK YOU!!!!!!!!!! I about started crying. And yesterday in the mail an Angel sent gift certificates to Runza. I about started crying. But lately I have to try not to cry because itТs hard to stop. What a huge relief for me! It may be just food to some people, but to me it was much more! This gave me peace of mind, this gave me more time to be home with our kids and not have to worry about putting it all together, this gave me time to not worry about having to take Jessica out to a store Ц which is hard for most moms anyway who have small kids. This gives me an evening where I do not feel so exhausted that I can hardly stand. BUT most of all, this touches my heart in ways that it needs to be touched. Knowing that many people are concerned and are praying for us is the best gift ever. So now I am crying as I write this and my shirt is all wet with tears.

Thank you.

--Toni

Wednesday, December 22, 2004 10:18 PM CST

We went to ArdenaТs School Christmas program last night. Grandma Jeanne stayed with Jessica at home. We still canТt risk crowd exposure. The program was very nice. The young woman singing УWhat Child Is ThisФ has a beautiful voice. I hope she continues to develop her singing. Santa made an appearance at the end and said a prayer to God asking for help this season to get all of his work done. I thought that was a nice way to tie it all in together.

Some news on Jessica. Seems her liquid stool issue is related to c. dif. Doc ordered another culture done on the stool on Monday. So, now doc has her on a med that should take care of that. The last time she had this it required her to be hospitalized because she got so dehydrated.

Just Monday, her TPN volume and calories were reduced Ц so IТm praying that she can take in enough fluids on her own.

Another glitch and delay in her treatment has occurred. The radioactive material that is used for one of her scans did not pass the quality checks, so the test has to be delayed a week. So now we are not meeting the Уwithin five daysФ requirement. Still she is not yet to day 100 post Stem Cell Transplant, so doc is assuring us that the timing isnТt unheard of Ц although itТs not ideal. Day 100 should be about the end of December.

The docs are following a specific treatment protocol Ц the sequence of events are as important as the timing. BUT Dr. Gordon assured us in mid-November that if at any time he feels something else is in JessicaТs best interest, he will get her off of that protocol and get her started on something that he feels she needs. So far, he still feels staying on protocol is o.k. for Jessica.

She did get the other assessments done. Check for certain things in her urine that are specific to Neuroblastoma. Bone Marrow test done. CT scan done. Results are not back yet. Please pray that she is still NED Ц that means No Evidence of Disease. From some of what I am reading, docs donТt necessarily like to use the term УIn RemissionФ anymore. IТm not sure why.

Something that is of concern. Today, Jessica started episodes of crying and complaining of pain when she is in the middle of dancing and goofing off. Then in a little while, she is dancing and goofing off again. She mainly complains of pain on her bottom, points to the hip and lower buttocks area. Then was saying that her knees hurt. The thing that really concerns me is that the quality of her crying is one that seems like she really, really hurts. She has also been more clingy this after noon and evening. I do feel fairly spooked about that pain.

IТd like to think that itТs just from where the bone marrow was taken, or that she is just over tired, or that maybe the c. dif is causing some pain Ц but something just doesnТt make those explanations fit. When she was first diagnosed with this monster, she had a couple of episodes where she kind of grunt, grab gut, shake leg, and said her leg hurt. Seems that leg pain is common with kids with Neuroblastoma. I pray that this is not the first sign of a relapse. I wonder too though if it might be a dehydration. I know the joints can hurt if a person is even a little dehydrated.

Also, complaining that her ear hurts. So we may win a trip to see the docs soon to check all that out. Long weekends are really tough. Seems the kids always come up with something when access to the docs is more difficult.

TimТs employer is changing the company who administrates the insurance policy. I am praying that the transition is smooth and that we continue to have excellent insurance coverage and management.

Another thing we are dealing with is that Jessica has grown out of the shoes that we got her in October. I donТt have any of ArdenaТs old ones for her. Ardena kind of skipped sizes and the size that Jessica needs now is one of them that Ardena skipped. It's just incredible how much she is growing. Her hair is coming in and her eye lashes are very thick. Her nails are getting more healthy. Getting taller every day it seems. Her tubbie brahs are all too small. For those of you who do not know what tubbie bras are Ц she has a Hickman Catheter that is best described as a long term I.V. The tubes come out of her chest and we have to care for them every day and change dressings and use them to infuse her TPN, I.V. Meds, and for blood draws. They hang out and have to be protected from pulls. So, we came up with the idea of having her wear a bra (so she could be like Mommy) and we either tuck the tubes in the bra or tape them and her line when she has TPN running. One of the bras I made from a dance/swim suite pattern that I modified. Another one is from a cut off old swim suite that I put elastic around the waist. Another is from a tank jammie top. And another is from a pre teen training bra. Well, she has grown out of all of them Ц so we need to take our three year old bra shopping.

We are all needing to get to bed because we all need to get up early and get into the Infusion Center for labs first thing. IТm kind of nervous about going into a hospital during flue and cold season, so I have both girls wear masks. They kind of get a kick out of it. I wore one tonight into the drug store because the last time I was there the whole waiting line was full of coughing people. I forgot I had it on and kept wondering why everyone was looking at me like I was strange.

We are looking forward to the next few days. Ardena and Jessica have become experts on chimineys and fire places. They have already informed us that we have to move the desk that we put in front of the fire place to make room for the tree. They have not insisted that we remove the cage from the top of the chiminey, but they have pointed out that they are worried about it being there. We have two days with both girls home. Then we will enjoy having Tim's family here.

Sunday, December 19, 2004 9:28 AM CST

This is a poem that another cancer mom sent me. It says a lot. I had asked her if she knew of anything - writings or something - that helps us cancer moms keep going with our hope. It's such a hard place to be. We can have hope and faith and we can believe in miracles. That keeps us going. We have to for our children's sake, our spouse's sake, and our family's sake, and for our own sake. But near the surface - always - with every breath that we take - the fear and dispair runs deep.

I suppose that is why the good times seem amplified to me now - more precious than gold.

It's so strange knowing all the statitics and risks. Of the kids with High Risk Neuroblastoma, who have reached the same point in treatment as Jessica has - and who will receive the next six months of treatment - 50 percent will have relapse, according to current statistics. In the early 1980's, when high dose CIS Retinoic Acid for the last 6 months was not part of the standard treatment yet - 100 percent relapsed. The addition of CIS Retinoic Acid to the standard treatment for High Risk Neuroblastoma was a result of clinical trials trying new, promising treatments and finding what works. 50 percent relapse is a lot better than 100 percent relapse. Please pray that current clinical trials result in even better success rates.

In the next six months she will have medicines that have various risks - some nuisance - some severe. Some of what Jessica faces for sure is possible rage behaviors and skin on the head and lip pealing. Possibly taking on lots of fluid. These are common side effects of one the the medicines that she will be taking. The medicine is also hard on other organs. We still are not sure what exact other treatment she will have in the next six months. Some of those meds can cause severe pain as somehow they cross react with the pain nerves. Also, she risks wild fluctuations in blood pressure. I don't know if we'll learn tomorrow what other treatments she will have or if we still need to waite until after the scans to know what is next.

Whatever comes next, please pray that we will have the strength to keep going and to keep doing what we need to do - for Jessica and for Ardena and for our family.

AND please know that with all that is going on, we still feel blessed and thankful. We are a family and we love each other. Our kids know that they are loved and that we will do our best to take care of them. We have many family members and friends who are praying and helping us make this journey as best we can. We have very skilled medical professionals and hospitals that we have access too. These are things that we do not take for granted.

Any way, here is the poem.

The Strength of an Egg
by Juliet Freitag

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true.

It is more like the strength of an egg. An egg, you ask? Yes! If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.

Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle, will break. The contents, once so neatly concealed will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.

It takes a lot more than pure hardness to hold the hand of hope. Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing and egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.

Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again. OVER and OVER again.......

Saturday, December 18, 2004 10:57 AM CST

Thank you to my friend Cathy who emailed that my note about yodeling got her to wondering. Seems there are lots of things available to help people who are interested in learning to yodel.

I found a site today called "Yodel! (til you get polyps)". AND since Ardena can read now, she wanted to know what a polyp is.

Jessica doing o.k. Some increase in liquid stool - wonder if that is an effect of Radiation Treatments. I hope this issue gets resolved soon.

Her hair coming back. All this change is kind of strange from a Mom's point of view. I don't recognize my kid anymore. First she lost all of her hair. Then she lost a whole buch of weight. Then she gained a whole bunch of weight. Now her hair is coming in. It feels so nice to rub her head. It's like crushed velvet. She is at least starting to smell like my kid again. For so long, all I could smell was medical tape.

Friday, December 17, 2004 7:23 PM CST

I shared my diaper dilema/idea with staff at Jim's Home Health. The cut the diaper up idea works, but for some reason is causing a rash where the cut part is. It's folded over and maybe it pokes just enough to irritate. Also, that has us going through a lot of diapers. I did get a good dose of humor out of sewing diapers - but I wondered if others had shared their ideas with the staff. Turns out that the owner has a child that needs special items like this. So, those folks there are really in the know. There is actually a product designed to line the absorbant garments. It's called a top liner or a booster liner or absorbant liner. The brand that the owner says works good for them in Tranquility. They really do work. And they are a lot less expensive than cutting up diapers. They also stay where they need to stay a lot better. Makes me think that parents with babies might want to know of this product for night time.

Today was the last day of Radiation Therapy. Jessica bounced in, presented her time card, got stickers on them, ran at full speed back to the treatment room, got her work done, and hopped back to the waiting area. The staff presented her with a snow man filled with candy. She has had so much fun unzipping and zipping the zipper to share her candy. I really enjoyed working with the staff there and really appreciated how they interacted with Jessica.

Next week is the assessments and then we are not sure yet what the next six months of treatment will look like.

Wednesday, December 15, 2004 8:11 PM CST

All is going well with Jessica.

BUT, the visions of 5 days off from scans that was dancing around in my head turned out to be pure fantasy. Turns out that usually there would be some kind of break. But in Jessica's case, since she took so long to heal from the Stem Cell Transplant and the Radiation Therapy was delayed for so long, she has to have all of her assessments done WITHIN FIVE DAYS AFTER completing radiation. That's certainly a different week ahead than I had envisioned.

So now I'm really glad that we came home every night this week.

WITHIN FIVE DAYS!!!! The last time these were done it seemed like it took two weeks to get it all done.

Please pray that we can do this both physically and mentally. I think my head will be spinning trying to keep all the instructions and appointments straight.

Monday, December 13, 2004 7:48 PM CST

We were up at 5 A.M. and loaded the car with what we packed for all week. We got to UNMC Radiation Oncology with plenty of time to spare (I forgot that the session was 45 min later than usual) Then we got out of session and I got home sick. I asked to have the rest of the appointments moved to later in the day, if possible. I don't know how many more mornings I could get up at 5 A.M. reliably. I checked out of the room and headed for home. It's so nice to be home. It's so nice to be home. It's so nice to be home.

I even got to enjoy a whole cup of coffee and read a whole newspaper while Jessica watched Air Bud. Then we went to get Ardena from school. This time she did her greeting with enthusiasm. She was so happy to learn that I got home sick and decided to come home every night this week.

Ardena won a trip to see the doctor last night at 9 P.M. A tooth pick ended up poking her in the bottom of the foot - straight in. Doc didn't think it looked like there was anything left in there - so just clean and dress and watch. It does concern me tonight because she hardly ate a thing and then she got chilled, but no fever. I'm bracing myself because of the last time she had an issue with her foot. She got bit by something and ended up hospitalized this summer with I.V. antibiotics because the infection looked like it was moving up her leg! That was at the same time that Jessica was hospitalized for one of her treatment sessions.

Please pray that Ardena gets on the mend without complications.

Thank you to our neighbor and my past coworkers for bringing over meals. This helps us so much. Jessica ate and ate on the lasagna meat tonight.

I'm hoping her digestive system will heal enough to eat all her nutrition on her own soon. The dietician said that they haven't had a kiddo on TPN for such a long time before. For those who don't know what TPN is, it's the I.V. Nutrition that she gets. She has been on it since June 04. She seems to be doing fine on it, but it isn't good to be on it for too long because it can start causing organ damage.

Monday, December 13, 2004 0:06 AM CST

Saturday 12-11-04

We are home this weekend. Again, so nice. IТm trying to cook up enough to last Tim and Ardena all week. Kids and Tim have been treated to Grandma JeanneТs and Aunt BettyТs cooking. Today IТm trying to replicate Grandma JeanneТs Bacon Tomatoe Greenbeans and Aunt BettyТs Sticky Beans (thatТs what Jessica has named them Ц baked beans). It was wonderful to have Poppy Seed Bread from Cousin Jody. ItТs hard to get back into the keeping house mode. For one, IТm exhausted. Secondly, IТm fairly distracted with all the medical demands and all that is on my mind. Again tonight, we have another pan to add to our burned pan collection.

I worry about Ardena. When she saw me yesterday, it was not the usual hug and jump for joy. It was just flat emotion Ц УWhy are you here early? I have to do work on my handwriting when I get home and I need a new lunch ticket.Ф. I wonder if she has just given up wishing that we might be home for good. She did get excited when she saw Jessica Ц at least that felt good to see that again. We got ArdenaТs hair cut today. A little different of a style. She is not sure about it. She is spending a lot of time looking in the mirror Ц says it does not look like her anymore Ц I think she does like it, but it will take some time.

Jessica may be showing some affects from Radiation Therapy. Extra tired and is showing more nausea during the day. At times very clingy and goes through crying episodes without identifying what the issue is. But I would say that she is doing pretty good and able to have a good time. Play, play, play.

She is really into the music. She even tries to sing the instrumental parts. She was making some kind of joyous noise last night. Seemed like she was yodeling. I wonder if there is a good music video of how to yodel. So then we got out an old video Ц Toy Story 2 Ц so she could see who Jessie The Yodeling Cowgirl is.

Sunday, December 12, 2004

We all went to church today. Jessica wearing a mask. She might be working out of her trauma from the automatic flushers. She asked to go potty at church. Usually this is a ploy to go goof off. We go ahead and take her to reinforce that she wants to go. This time she actually went.

Then we came home and just did our thing. Doing up the mountain of laundry. Uncle Brian and boys came over for a while. We also played with Sydney and Logan today and tonight. Jessica was SoooooOOOOooo happy to get to play with her friends.

A friend from my past work brought over a lasagna and Christmas treats. THANK YOU. This helps me so much!

Tomorrow is another day of Radiation Therapy. Radiation Therapy should be completed this Friday. We will have 5 days after that where she cannot be assessed or scanned Ц so IТm looking forward to the break. Then it will be several assessments every day for two weeks. ItТs my understanding that the purpose of the assessments and scans is to determine if she is still NED Ц or No Evidence of Disease and if she is still healthy Ц meaning check for organ functions to see if they have had any damage from the treatments and if they are healthy enough for the next round of treatments.

See below for links to place that is selling a Christmas CD to help raise money for the UNMC Pediatrics Department. Also link for a photo tour of where Jessica is getting her Radiation Therapy.

Sunday, December 12, 2004 11:59 PM CST

Saturday 12-11-04

We are home this weekend. Again, so nice. IТm trying to cook up enough to last Tim and Ardena all week. Kids and Tim have been treated to Grandma JeanneТs and Aunt BettyТs cooking. Today IТm trying to replicate Grandma JeanneТs Bacon Tomatoe Greenbeans and Aunt BettyТs Sticky Beans (thatТs what Jessica has named them Ц baked beans). It was wonderful to have Poppy Seed Bread from Cousin Jody. ItТs hard to get back into the keeping house mode. For one, IТm exhausted. Secondly, IТm fairly distracted with all the medical demands and all that is on my mind. Again tonight, we have another pan to add to our burned pan collection.

I worry about Ardena. When she saw me yesterday, it was not the usual hug and jump for joy. It was just flat emotion Ц УWhy are you here early? I have to do work on my handwriting when I get home and I need a new lunch ticket.Ф. I wonder if she has just given up wishing that we might be home for good. She did get excited when she saw Jessica Ц at least that felt good to see that again. We got ArdenaТs hair cut today. A little different of a style. She is not sure about it. She is spending a lot of time looking in the mirror Ц says it does not look like her anymore Ц I think she does like it, but it will take some time.

Jessica may be showing some affects from Radiation Therapy. Extra tired and is showing more nausea during the day. At times very clingy and goes through crying episodes without identifying what the issue is. But I would say that she is doing pretty good and able to have a good time. Play, play, play.

She is really into the music. She even tries to sing the instrumental parts. She was making some kind of joyous noise last night. Seemed like she was yodeling. I wonder if there is a good music video of how to yodel. So then we got out an old video Ц Toy Story 2 Ц so she could see who Jessie The Yodeling Cowgirl is.

Sunday, December 12, 2004

We all went to church today. Jessica wearing a mask. She might be working out of her trauma from the automatic flushers. She asked to go potty at church. Usually this is a ploy to go goof off. We go ahead and take her to reinforce that she wants to go. This time she actually went.

Then we came home and just did our thing. Doing up the mountain of laundry. Uncle Brian and boys came over for a while. Friend from my past work brought over a lasagna and Christmas treats. THANK YOU. This helps me so much! We also played with Sydney and Logan today and tonight. Jessica was SoooooOOOOooo happy to get to play with her friends.

Tomorrow is another day of Radiation Therapy. Radiation Therapy should be completed this Friday. We will have 5 days after that where she cannot be assessed or scanned Ц so IТm looking forward to the break. Then it will be several assessments every day for two weeks. ItТs my understanding that the purpose of the assessments and scans is to determine if she is still NED Ц or No Evidence of Disease and if she is still healthy Ц meaning check for organ functions to see if they have had any damage from the treatments and if they are healthy enough for the next round of treatments.

See below for links to place that is selling a Christmas CD to help raise money for the UNMC Pediatrics Department.

Also link for a photo tour of where Jessica is getting her Radiation Therapy at University of Nebraska Medical Center/Clarkson Hospital.

Thursday, December 9, 2004 2:27 PM CST

Radiation Day 6

Jessica showed up for Radiation Treatment today and asked to go back to her own office. After she was done working on the computer and drawing pictures with crayons and markers, the staff presented her with her own time card.

The singer that Jessica made friends with last week was performing again today in the Nebraska Cafe. They are doing fund raising for UNMC Pediatrics Department. Jessica went down and watched him sing again. The Christmas CD they are selling is of all new Christmas songs that a couple here in Omaha wrote and produced. The singer is Daniel Humphry. They took pictures last week of Jessica and Daniel. She just fell in love with him and the music. They have some of the pictures posted on their web site. See below for automatic link. www.uniqueverse.com

Wednesday, December 8, 2004 7:10 PM CST

Radiation Day 5

Session went well. Doctor Raman looked her over to check to see if there was any skin reaction or to see if there is any internal pain. Nothing noted. Jessica just giggles and hugs and gives raspberry lips. They set her up with her own office, complete with desk, chair, computer, box of colors, and paper. She hasn't thought to negotiate salary yet. I tried writing journal live from Radiation Treatment, but it went so fast that I didn't get but three sentences typed before she bounced in and demanded her desk back. She was introduced by Doctor Raman to another doctor today and her immediate response was to give him the raspberry lips.

One of the radiation therapists, Jana, started to explain more about the radiation. She said that if she were a mom, which she is, that she would want to know more too. Also, that it is a field that tends to be way out there for most people. Her explaination does help me feel like I understand it more. So here I go in explaining what I understand at this point. Seems the reason there is nothing spelled out in terms of Jessica's exact cancer and the radiation therapy is that there are many many factors that go into determining her dose, type, and location. The type of cancer, what it responds to, the location, the organs involved (different organs can tollerate and recover from different amounts), whether there is residual tumor or none, her size, the depth, the other body structures that surround the area, the densities involved, the kind of machine used, the source of radiation....I'm sure there are many more factors. She explained that, yes, MV does stand for megavolt, and yes, that is what Jessica gets. It's a very strong energy. But it is not as strong as some - like 23 MV. So in terms of radiation therapy, it is considered low dose. So I guess one could say that it is a low dose of very strong energy. It has to be that strong to cause the cellular changes that it needs to do. It needs to destroy the cancer at a cellular level, but it needs to not destroy the other structures past the point where they can repair themselves. Jana explained that Radiation Therapy requires that they do many, many checks and repeat checks and calibrations and validations. They use the marks on the outside of her body for rough adjustments, but also do x-rays and measurements from her spine and other internal structures. They also take films of the energy that does get applied to her to verify that it is getting where it needs to get to and does not go where it should not go. Being told all of this helps me feel like I at least know what is basically going on. I still do not know how a rad or centigray gets measured from the MV that is applied. Jana is an instructor of this subject and has offered to give more explaination.

In Jessica's case - as of her last set of scans and tests - there is no cancer detected. So, they are giving radiation therapy to treat the potential that undetected cells are there just waiting to sprout. One might ask, if there is no cancer detected, why Radiation Therapy? But history proves that without Radiation Therapy and CIS Retinioc Acid Therapy Post Stem Cell/Bone Marrow Transplant - High Risk Neuroblastoma always comes back. AND even with Radiation Therapy and CIS Retinioc Acid Therapy - expecially with kids that have such poor histology factors - most of them have the cancer come back. BUT there has been great improvements made in the survival rate in the last few years. One of the most recent improvements was the addition of the CIS Retinoic Acid Treatment. This is a treatment that causes any left over cancer cells to essencially age prematurely and not replicate. Even after the CIS Retinoic Acid Treatments, she will have to be watched for many years to detect any relapse.

We met with Dr. Gordon today. He explained that even with Jessica poor histologies - the fact that she has made it through Stem Cell/Bone Marrow Transplant and is now considered No Evidence of Disease is reason to celebrate - because the longer we can keep her that way, the better for her. Many kids do not even make it to the Stem Cell/Bone Marrow Transplant without relapse.

I think often about what it must be like being a Pediatric Oncologist or Pediatric Oncology Nurse. Seeing all of these beautiful children and all of these scared parents and families. Knowing that there are only certain tools that are known to work - and sometimes they do and sometimes they don't. The treatments are long, so the doctors and nurses would get to really know the child and family on a certain level.

Cancer is sneaky and it can lurk undetected and it just scares the begeebers out of me. And no matter what, we just have to know that we are all doing the best we know how. We just have to love all of our children and feel blessed for every moment they are with us.

Monday, December 6, 2004 2:12 PM CST

Radiation Day 3

Session went well. She showed her birthday party pictures to a couple of the staff. She gave Dr. Raman a huge hug again. Her ANC remains fairly low. 627. I'd feel a lot better if it were 1,500. But at least it's not below 500. Normal is to have it above 2,500. It's hard to think that a kid with her energy has an immune system that isn't not as strong as it should be.

We drove in to Omaha last night. It was very foggy, so we drove about 50 mph most of the way. Just after the Platte River, there was an that looked like it involved both East and West bound lanes. We got to the Nebraska House and were so thankful to wake up there and be able to get to the appointment on time without having to deal with the drive and traffic in the morning.

Please pray for Jessica's friend Skylar. He has the same cancer that Jessica has. We met him and his family earlier this year and spent the 4th of July together in the hospital room at Children's Hospital watching fire works. His cancer is not responding well to the treatments and they now face having to take him out-of-state to be evaluated for a different kind of therapy that many feel is more hopeful for the recalcitrant tumors.

Sunday, December 5, 2004 9:43 PM CST

The diaper idea has worked fairly well so far. IТll need to find time today to sew up two and a half weekТs worth for when we are back in Omaha. Jessica still wonТt reliably try to sit on a potty. Yesterday she tried and a person in the next stall flushed and it set off her fears again. She still has liquid stools. I have a feeling we have not gotten to the bottom of that issue yet.

ItТs a joy to watch and listen to the girls play together. Tim heard them yesterday while they were in the play tent. Ardena told Jessica that she wanted some privacy because she was nursing her baby. Jessica responded that she wants to be a nurse too.

Another thing we got to do today that we havenТt done in a long, long time is go for coffee and rolls after church. Jessica loves to race all over the gym. We got to talk to some friends that we havenТt in a long time. Tom, Ann, Ray, Jan, Kathy, George, MarkЕ..Lana called last night to see if I could attend the Alter Sociey Christmas Dinner. At the time I didnТt think so because we are planning on staying in Omaha for the rest of the week, but now that I enjoyed visiting at church so much, if I can come back for that, I think I will. I am so thankful for the support that Blessed Sacrament Church and School have given us.

Last year many of the teachers watched Ardena for us after school. We felt really blessed that her Kindergarden teacher knew a lot about migraines. This year her first grade teacher knows a lot about cancer. It really helps to know that they really know what we are going through. So many of the parents also have invited Ardena places. That helps a lot when we canТt do too much in crowds with Jessica. I hope that changes soon. Her bone marrow engraftment seems to have done well, even though it was a bit slow.

After church we took Ardena to one of her classmateТs Birthday Party at A&R Skate. I was so afraid that she would get another migraine, but the moms there know Ardena and have seen her get the migraines and other school activities and parties Ц so I was told that they would watch her and call if needed. So, I dropped her off to enjoy the loud crowd. She had a ball. It was great because I got to visit a little with Nancy and Amy and Pat and Kathy and CarlyТs mom. ItТs feels so strange that I really do not know many of ArdenaТs classmates or their moms or even what she is learning in school. Tim saved all the homework sheets so I could go through them. That helped me a little.

IТve still been trying to understand the radiation treatment better. ItТs such a complex subject. UV Rays, X-rays, Gamma Rays, Photon beamsЕ. All this has to do with different wave lengths of the energy. Still I canТt find anything on the web that spells it out for what a child should get when they have Stage 4, High Risk Neuroblastoma with NMYC of above 10,000, Poor Shimada, Aneuploid and Hyperdyploid properties, with 50% viable tumor at resection with complete resection. Her Radiation Oncologist explained that she would get 2160 Rads in 12 factions. He also said that УRadФ is the old term and that the new term is УcentigrayФ. I donТt see any of those terms on the protocol pages that I have. I still think I may be missing some pages and I will ask. The only term that I think might refer to dose is in the part labeled УModality: X-ray with nominal energy of greater than or equal to 4MV. IТm not sure what MV stands for. I think it stands for megavolt Ц but Tim is thinking that seems strange and might not really refer to what she is supposed to get. I think that might refer to the machine power, not what she will get. Tim certainly understands more about physics than I do Ц but even he is saying that he just doesnТt understand this radiation thing very well. He explains that it is such a complex and relativistic field of physics, and that he feels he has to just defer to their judgement unless he notices something that is glaringly wrong. Sometimes I wish I could think like he does. That is a very nice and sophisticated way of saying УItТs above my head so I just have to trust themФ. I donТt notice anything glaringly wrong Ц but IТll have to say that it scares me that I donТt know enough to be able to notice anything wrong or right about it. I suppose that trying to explain Nuclear Physics to someone with limited knowledge in the field anyway is a huge project. IТm allowing something to be done to my daughter that I do not understand. IТm not against it, but I just donТt understand it the way that I wish I did. But it does make me feel better that Tim doesnТt understand it either. At least IТm not just dumb. So, IТm back to the leap of faith, get down on my knees and pray, pray, pray Е.

Tim got the tree out and started to put it up. Then he had to leave to go play guitar at the Cathedral. He hasnТt done that for many, many months. The phone range right after he left and when I got off of the phone, Ardena had finished putting up the rest of the tree by herself (having Jessica help)!!!!!!!! After I got the lights on, I tried to move the tree and it came apart, messing up the light hanging. Then I just tugged and moved until it looks o.k. and then tried to stuff the wires deep enough that they canТt be seen. Then the girls went crazy with all the hanging of our ornaments Ц or whatever else they found to hang on the tree. There are a few bent up pipe cleaners that are of no particular shape and wadded up papers that fit in nice with the other ornaments. The apple sauce and cinnamon ornaments still smell good. To pull it all together into looking balanced I added in poinsettia flowers. Those helped to hide the wires too. Then the girls took off all the poinsettia flowers and pretended that they are married. ItТs so great being home. But later Ardena cried and cried when she realized we have to leave tonight.

Please continue to pray for Josh's family as they are adjusting to life without him. Also, please pray for another wonderful child, Haley. She has relapsed several times and their family just found out that the most recent scans show that the cancer is not responding and is getting worse. Josh and Haley have Wilms Tumor. It's not exactly like the kind of cancer that Jessica has, but is a solid tumor. Also please pray for Sydney Dugan. She does have the same cancer as Jessica does. She has relapsed and her family now is letting the doctors try some experimental treatments on her. It is my understanding that once a child with High Risk Neuroblastoma has a relapse, the odds of survival dip into the single digits. Her family has decided to go ahead with these experimental treatments to contribute to research. The kind of research is in trying new drugs that have some promise and determining the dose tollerated. Sydney is experiencing a lot of pain and side effects.

Saturday, December 4, 2004 1:43 AM CST

O.K. -- I'll be MOM.

One of the problems we have been having lately is that since Jessica is on TPN for 16 hours a day, and the majority of the time she is on it is at night, she is not potty trained and goes all night long. So you know what we find in the morning. She likes Huggies Pullups, but they do not absorbe enough for an all night wetter.

We have tried various products. Huggies Overnights were really good, but with her weight gain, she has grown out of them. We tried the bed wetter pants for older kids called GoodNights. Those seemed to work for a while, but lately they have not been doing such a good job. Also, the Home Health Products Provider informed us that the reimbursement rate for those was so low that they loose money on them. We also tried a different brand (Prevail) from the Home Health Products Provider - but they really did not work. Jessica did not like them because they looked like she was wearing big balloon pants. I didn't care for them because they leaked really bad. The Home Health Products Provider is limited on what their supplier has in stock and such.

If you are wondering what reimbursement rates and diapers have to do with anything - since she is three and is not potty trained for medical reasons, her secondary insurance pays for incontinence products. That is why we order them through Home Health. We are very thankful for this coverage.

The only down side is that we have to order a whole months worth at once. Then we have to find a place to keep packages of 300 diapers in our house.

So, back to the original issue. I have my thinker on. Pampers has a diaper called Baby-Dry that goes up to size 6. It fits her good. It's supposed to be a leak stopper and says it's even for all night. Well. I'm not so sure - especially since we have had such time.

So I came up with a plan of my own. I found out that if we just double diaper her - it doesn't really work because all the elastic leak guards seem to work against each other. I thought what would really help is a type of smaller absorbant pad to put in the diaper. BUT I'm sure the adult Poise Pads are not intended to hold the kind of volume that a kid on TPN puts out. Tonight I cooked up my own plan. I Zig-Zag sewed long the edges of some of the diapers to help keep their stuffing in. Then I cut off the side elastic, so that I have essencially a huge pad that I can line another diaper with. I think I'm on to something big - as long as the zig-zag holds. It will be something if it doesn't hold and the stuffing swells out all over the place. Those diapers have that gel powder in them that absorb like 10,000 times their weight in liquid. If that stuff swells out all over the place it will be like she is sleeping in Cream of Wheat.

I haven't told Tim about my great idea yet. He thinks I'm weird for some other stuff anyway. I think I'll let him find her some morning and see if there is Cream of Wheat looking stuff all over the place.

Friday, December 3, 2004 8:01 PM CST

We were all up early today to get Ardena ready for school and to get Jessica get ready for another trip to Omaha. Radiation Day 2.

It's Johnny Cash all the way there and back. It's funny when "Ghost Riders In The Sky" comes on. Jessica announces, "Now I have to be mad." and she gets on this really mad looking face. I ask her why she has to be mad. She explains because the music is mean. She tries to keep a mad looking face as long as she can, but then she can't help singing along, so then she just has a good time.

Jessica again was able to get through the treatment without sedation. This is really fantastic. If she were to require sedation, the whole process would take about three hours. Set up, sedation, monitoring, treatment, and recovery. But without sedation, it takes about 20 minutes of time. The actual radiation part is only a few minutes, but they take careful steps to set her up and check position and help her get ready to stay still. We would be out of there really quick, except that she just has to run around and visit and put on for every one and spread as much sunshine around as she can. When she saw Dr. Raman she just giggle and giggled and then gave him real big and long hug. Then she had to write on the yellow sticky pad - a letter to Santa. She explains she is making a list for Santa to bring a choo choo train.

Pediatric Gastroenterologist called last night to report biopsy results. The irritations seen by the scope evidently are not caused by any organism. So that is good. At this point it seems just more time to heal is needed. Also, the increase in Zantac did seem to really help. When she gets weanned from TPN, he wants to put her on a different medicine than Zantac. He explained that liquid Zantac is, he thinks, is some of the worst tasting stuff. He'd like to try her on Prevaced - Proton Pump Inhibitor. Zantac is a H2 Blocker. Both of these lower the level of acid in the tummy.

Also, she is doing better with swallowing food as long as it is moist. She still has trouble moving things like bread to the back of her mouth and down her throat.

The dietitcian is changing the TPN formula. Seems Jessica's weight gain was a result of the TPN having too many calories for her age/wt. She was gaining a little over a pound a week - something that kids her age just don't do. The dietician is thinking hopefully we will see a slow down or a stop or a slow minimal loss. Hopefully something that is more in proportion with her height. I don't know enough about TPN formulas and how to determine calories and rates to have known to raise the issue. All I knew is that she was really getting big. For a while it was great because we never saw her look so good. But it's to the point where she is bigger around than Ardena is.

This radiation thing is hard for me also. I like it when I can see the doses for myself - like the i.v. bag or the pill label with description or the syringe of whatever with the label on it. Then I feel that if it looks to me like what I thought she should be getting, then it feels o.k. that she gets it. If I put it in the TPN bag, then I know she got it. I read the product insert and I can check that the dose makes sense.

With the radiation - I can't be in the room with her. I wouldn't even begin to be able to read the settings on the machines for the dose or the duration. I can't see exacty where it is going. I've seen the pictures of where it is supposed to go and there are marks on her tummy, but actual radiation is invisible. How would we know that it actually got there? I can't tell if she got enough or too much. It feels like a total leap of faith.

I do feel that Dr. Raman is a very good doctor and I feel that he really does care what happens to Jessica. I talked to a couple of nurses and other medical professionals here and they say that the other doctors in the group have a lot of respect for Dr. Raman. The parent that I spoke with felt very pleased with Dr. Raman.

I have a copy of the study protocols for radiation that mainly helped me understand the labs to determine rediness and the area to be radiated. Dr. Raman has gone probably above and beyond explaining it to me. He explained that she will get 2,160 Rads in 12 factions of 180 each. BUT what does that mean? How would I know if that is what she was supposed to get? I don't have a dose/wt chart like I would with a medicine.

I think maybe I'll ask to see if I am missing a page of the protocols because Dr. Raman said that all the doses and stuff were in the study protocols, but I just do not see them on the two pages that I got.

AND in my mind I just can't picture what a Rad is.

Maybe this is the point where I just have to be "Toni, the mom" and not "Toni, the one who tries to understand all that she can."

What is interesting is that on other websites with kids like Jessica, the parents will say something like, we are having Radiation - not too many side effects - some will say it will be high dose or low dose - the number of days - Some will say their child got tatoos for the target marks - BUT none of the parents have listed the Rads or factions. Even when I look for information on the National Cancer Institue, there is nothing that spells it out. All it says is that it is determined on a individual basis.

And sometimes, I just don't have the brain to check it all out. The exhaustion level is very high. The fear level is very high. The level of all the things that have to be done is very high.

So, back to my point. Maybe I'll just have to be MOM. Bake some bread. Make some spare ribs. Cook a leg of lamb. Make some potatoe casserole. Wash all the clothes and bedding over and over. Give Mega Hugs to the girls. Try to kiss Tim once in a while.

Thursday, December 2, 2004 3:40 PM CST

The radiation machine still is not working, but they set up the other machine for Jessica and have had to move appointments around to make it work.

She had never been in the actual machine room, so I was afraid that the newness would cause her anxiety. But the wonderful technicians there let her see the room and let me lay down on the table and then took her outside the room to look at the t.v. monitor that they can see her with and let her talk over the speakers to me. Then she was refusing the tape to help her hold still. But with Blankie there, she did just fine. The technicians there did a wonderful job helping her feel comfortable. AND she did not need anesthesia. When they were done Dr. Raman took her upstairs to get some cookies and then they came back downstairs and then we just walked right out of there and went on with our day.

Jessica wanted to go get something to eat so we headed up to the Storz Pavillion at UNMC/Clarkson. On the way we found that they were having live Christmas music of new Christmas Songs. They were fund raising for the Pediactrics Unit. Jessica joined right in with the music and entertained all that came by. She really gets the beat and is quite good with the dance moves. She made instant friends with Danny, the singer, and really had a ball. We also ran into our friend Patricia and got to talk with her for a while. Patricia is studying to be a Chaplain. Then we went to eat. Then she got sick. Then she got her thumb pinched in the bathroom stall door and then when that calmed down she wanted to use the potty and we got her on the potty and the automatic flusher went off and scared the begeebers out of her and she refused to even try to go. And then she wanted to sleep. I guess that's what it is going to be like (or worse) - the effects of the treatments. Actually I think the effects of the door pinch and the automatic flusher is what is going to have the most lasting negative effect. She is now refusing to even sit on the potty at home.

With them trying to use just one radiation machine for a while, they had to move our appointment time earlier. Also, I found out that they plan to do it every day during the week as long as she tollerates it. So, maybe staying at the Nebraska House is the best for the rest of the treatments. Especially for when the effects get worse. It will be good to have somewhere quick to go take a nap.

Ardena is disappointed about this. She has really enjoyed having me come get her from school.

I am thankful that there are many kind people here. On the way to Omaha I noticed that we were on Empty. But when I pulled into the Shell station at the Ashland exit, I found out that I had left my wallet at home. No money, checks, credit cards, or i.d. !!! I was so thankful that they worked with me and worked out a solution so that I could get the gas that we needed.

Wednesday, December 1, 2004 7:28 PM CST

Radiation Oncologist called last night, I think it was after 6 P.M. and he was sorry to have to tell us that Radiation Treatment would have to be cancelled today as well. Seems the machine with the new part has to test out as working within certain calibrations. Wouldn't want radiation spilling out all over the place.

It makes me think a lot about an article in last Sunday's paper about Marie Currie. The things from her home and lab had to be locked up because they were so contaminated with radiactive material. If people wanted to look at her papers and such, they were required to sign medical releases.

It's 7:36 P.M. right now, and no phone call, so I think it's a go for tomorrow.

Jessica looks good. Gained more weight. Now 18.2 kilo. For those of you who do not think in kilo - that's just over 40 pounds! Her Oncologist looked at her toes because I thought they looked like they were getting worse. But when he pressed as hard as he could on them, she giggled and then started doing the rasberry lip at him. So they might look a little worse, but seem to actually be doing pretty good. She walks around the clinic and hospital looking like she owns the place and puts on a comedy act for anyone she sees.

Ardena was so excited that we got back to Lincoln in time to pick her up from school. She runs up and jumps up onto me hugs me and about makes me pop a hernia. This is the same way she greeting me at the end of the day when she was in preschool. When we got home the girls played, played, and played. Ardena was teaching Jessica about the Nativity. They got out their collection of "My Little Ponies" and played Nativity with those.

We ran into Cameron's mom in the cafeteria. They are trying to move their Make A Wish trip earlier because his bad numbers are rising at an alarming rate. I'm trying to ask you for prayers for him and his family, but I just start crying and don't know how to put it to words. I just pray that the rest of his days on Earth are full of love and peace and as much fun as he can have.

Addition at 9:36 P.M.

Please pray for the family of another of Jessica's friends. Josh earned his angel wings today. I am so sad.

I was hoping Josh and his mom could come over and play on Jessica's playset. But during the summer, we were all so busy with treatments for both kids, then winter came and we were still all too busy and it's cold.

It seems so inadequate to say that he as "earned his angel wings". All of our beautiful children are already angels, but this is a saying I saw another parent use about the children he has met and it just seems a nice way to say it.

Monday, November 29, 2004 8:00 PM CST

Radiation Oncology called this afternoon and said that tomorrow's radiation treatment would have to be cancelled because the machine needs a new part. They explained that it takes overnight to get the part and then a day for the physicist to put in the part and do all the checking.

On one hand, the delay makes me more nervous because tomorrow would be day 69 post Stem Cell Transplant. Idealy, the radiation treatments should start by day 42.

On the other hand, I'm glad that we didn't get radiation today or tomorrow - if the part was going out. It wouldn't be any good to have it go out in the middle of the treatment and double zap her or to have it fail and not know it and get blank treatment. I don't know what part it was or what could have happened, but my mind thinks of Star Trek Transporter malfunctions when I think of Radiation Machine malfunctions. Can't be good especially if it takes that long to fix it.

PLEASE pray that we do not see a relapse as a result of the delay in Radiation Therapy or ever. We are now at a three week + delay. Even kids that do get it on time have relapse - so maybe I can't really say that it would be a result of that directly. It just all makes me nervous. It does seem that the delays were justified with the Pancreatitis and her liver enzymes were still elevated. Those are now just in the range indicating ready for radiation.

So with that news, I decided to check out and come home. Soooo nice. We had Salisbury Steak. Jessica ate about as much as Ardena did. Huh? They got into some real heavy play with walking around in Princess Shoes. Then watching Air Bud. Jessica is so in love with the Air Bud series. Then Tim and Ardena did her math flash cards and spelling and reading homework and read a book. I think she might be a Spelling Bee champion like her Daddy was. I'm on the computer downstairs right now and I hear some fighting and crying going on. Time for me to go upstairs and see if I can help get them to bed.

There is a CT schedule for tomorrow to see if there is anything that would explain why she does not swallow well. But she is swallowing a little better as long as the food has a high moisture content. So, I'm going to see if that can be cancelled so that we don't have to go to Omaha at all tomorrow. We will have to be there fairly early on Wed to have Onc doc check her toes before Radiation. They are still looking bad - look ingrown, but more scary is how infected the one looks.

Getting checked out was an ordeal as Jessica was demanding all the supervision that I could give. If I took my eyes off her for fifteen seconds (like to pack or strip a bed or find a matress pad or find a brah) she would find a door to shut her fingers in or a soap dispenser to squirt or a flight of steps to fall down or a Christmas Tree to dedecorate. We stayed at the Rainbow House because Nebraska House was full last night. Rainbow House is a wonderful place.

Monday, November 29, 2004 2:00 PM CST

Good thing we were in Omaha this morning. The Radiation Oncologist called just after 8 A.M. and discussed my report to them that she had gained 1.5 kilo, maybe a little more since her mapping. He needed to leave town today for a clinic he does is Iowa, but he was hoping I could get her in early so that he could check her before he needed to leave. His concern was that the mapping may not be accurate at this point, so they could not start radiation until they checked. Good thing he thought to check, as the measurements were off and they needed to remap or resimulate. AND Jessica wowed them all and did it without sedation -- our Sleeping Beauty! We will have to waite until tomorrow to start radiation therapy. RadOnc Doc is going to try the radiationg without sedation. That would really be great, as she is quite a combative bear when coming out of sedation.

Grandma Jeanne is snowed in back home with the roads closed. I'm exhausted having to chase her all over the place by myself.

Tim reports that Ardena's migraine left at 2 A.M. - she finally felt she could walk and she got him up because she was very hungry. She can't eat anything when she gets migraines because she gets so sick with vomiting. We are not sure it's gone gone because she reports that her tummy still hurts. Time to get into the Neurologist to see if any of the new meds might work for her to prevent these. All we do now is give her medicine to help them go away. It would be really great to not get them in the first place.

Sunday, November 28, 2004 1:14 PM CST

Well, the snow started to fall around 1130 today and I chickened out and got a room in Omaha. We will travel tonight so that we are sure to make appointments on time in the morning.

Please pray that Jessica's Radiation Treatments are successful and that we have some more answers from the results of her digestive system biopsies. She does feel better, but there are still some things that do not seem normal at this point.

I was really looking forward to doing something with Ardena this weekend - really getting to be her mom. We shopped for snow boots for her on Friday. Then we went shopping last night for a birthday present for a friend at school.

Today we went to church as a family. It was wonderful that Jessica got to put money in the kids offering. She is so proud when she gets to do that.

Sue from MOMs group was there and she introduced me to her mom. I miss all the MOMs so much. Sue is Jessica's boyfriend's (Bryce) mom.

Then Ardena and I went to one of her school friend's birthday party today. Then Ardena got a migraine just after we got to the party. So now we are home letting her medicine work.

I'm dashing to get as much laundry done as possible. Also, I do want to try to cook something more than fried eggs. The girls really like Salibury Steak. It would be such a pleasure to get to bake some bread - but I just don't think there will be time for that. I think a pot of Chili sounds good too.

Thursday, November 25, 2004 9:40 PM CST

We are home. It feels good. The girls played and played and played. It looks like an explosion of medical supplies in our house. Stuff all over the place. I forgot half of it in the Explorer last night and it froze, so that will help me know where to put that half.

Our first stop in Lincoln was Duncan Aviation to see her Dada. Jessica likes to go and inspect as many planes as she can. She got to inspect planes from all over the world. Falcons and Gulf Streams and Lear Jets and Cessnas and Hawkers and some other plane that was bigger than the rest. Planes from Egypt and Venesuela and it looked like one from Britain - and of course some with the Amerian Flag on them. One of the workers tolder her that he needed some help and asked her if she would like a job. Her reply was, "Yep!".

Now both Tim and I are exhausted. Chasing both girls and keeping up with them. Jessica still having liquid stools. We have had to wash two beds and a couch since we've been home. Also, needing baths and foot soaks. By 1100 this morning, Tim asked if it were nap time yet. He was so tired today that he went to bed at 8 P.M.

But it was great. Jessica woke up and she and Ardena were playing with the ballet costumes. Jessica decided that the tule skirt was a wedding dress and decided she was married to Jesus, she was both Mary and Emily, and her baby doll was Jesus too. Ardena was trying to teach her about Joseph, but Jessica couldn't say it right, so would say "Jofes". So they both walked from the bedroom to the living room and from the living too the bedroom - like a hundred times - talking about all of this. Jessica was still hooked up to her Nutrition Pump. It's in a backpak and she just drags it with her all over the place.

A couple of night ago, she tried eating some baked beans. She was able to get two bean down and a sip of milk and it didn't make her sick right away. She was so excited that she blurted out. Hallabooya. I asked her, Hallaabooya. She said, no -- Hallaboola. I asked, Hallaboola. She said, no -- Hallabooa. I think she could tell that it was not quite right, but she didn't get it that it was the "boo" part that was really off. So, now it's not off. We are all saying any version of it that comes out. Hallabooya, Hallaboola, Hallabooa.

Last night, she told Cousin Jody that she heard that we were going over to her house to eat turkey. Cousin Jody confirmed. Jessica asked if she could play downstairs with the kitchen and the table and chairs. Cousin Jody agreed and Jessica said, "Hallboola!"

So today we all went to Cousin Jody's for Thanks Giving Dinner. Having the social atmosphere of all of us eating helped her want to try -- AND she actually ate about 1/3 of a slice of pumpkin pie! AND it stayed down. The best part was seeing all of the kids play together. Play with the kitchen, play with the coasters, play with the dolls, play on the piano, goof around, play Rumicube and Mastermind, braid hair, knitting, tease, make faces through the windows, and play tackle football outside in the grass.

The GI scope on Tues did find some things. Some changes in meds that might help were done. Increase in Zantac and an addition in meds to help with nausea. These have seemed to help some. Last night she cried out only once at 4:30 A.M. Also, some food is staying down, where before it all came back up. But some is still coming up. They also found some other issues that explain some of her problems, but will not know what to do about it until the biopsy results are back. A CT of the throat will be done to try to figure out the difficulty swallowing and drool issues. If that proves to not find anything like liquid build up or infection - then the plan is to treat whatever the biopsy proves and to wait it out for a while before expecting her to eat any better.

We go for labs tomorrow morning - but get to do this in Lincoln. Then on Monday we start Radiation Therapy. She will have Radiation for four days every week for three weeks.

Ardena is begging that we come back home every night for the rest of the month. At this point, I'm with her. I am sooooo glad to be home. It's wonderful to hold her and get to smell her hair. We layed on the couch last night watching t.v. and she fell asleep on me. She was soo pleased to find that I had ironed on the patches for her Brownie Scout Troop Vest before we left for Omaha on Monday morning. Monday night she got to wear it to the meeting. She seemed really proud to wear it.

It was such a pleasure to get to drink my coffee out of my Fitz and Floyde "Coq du Village" coffee cup. That was a momento that I chose to have from Grandma's stuff before her estate sale. I'm still thinking of decorating the kitchen in that style. I wonder what walls of Rooster Waddle Red would look like.

For the rest of the weekend, we will just try to be as normal as possible. Tim has been working on headboards for the girls beds. They had specific requests about the boards. They wanted them to be pink and wanted to decorate them with stickers and stuff. Tim found a pattern, supplies, and got some paint. Then we will go and find some craft jewels and stuff and the girls will have a ball.

Hope all of you had a Happy Thanks Giving.
Love and Many Blessing to you and your families.

Tuesday, November 23, 2004 7:55 AM CST

I had a really bad head ache last night. It was a long day. She needed lab done. And Tim noticed that her big toes looked bad. So we had and appointment to have the doc look at her toes. Seems they are infected with something. So, just when we are ending one antibiotic, we are starting another, and now have to do foot soaks.

It's kind of funny. I was wondering why she is having all these issues. UTI, bowel probs, Infected Toe -- well, duh, she's an immune compromized kid. Today it looks like she might have pink eye.

So back to the head ache. I begged Jessica to let me lay down for a few minutes and close my eyes. I was so glad that she was keeping herself occupied instead of demanding my attention.

AND of course, those are the exact thoughts that many parents around the world have just before they realize that their child or children are really into something.

I opened my eyes to find Jessica standing on the other bed (we are back at Nebraska House). She had drawn on the wall with ink pen. She was standing on the bed and had reached as high as she could reach and drew all the way down that she could. My first words were, "Jessica! What are you doing!"

"I'm writing a letter to Santa. That's all. See." was her reply. Blinking her eyes.

Saturday, November 20, 2004 8:56 PM CST

I stand corrected. It's and Icee Maker, not a Slushy Machine.

Today, Tim called and said that Ardena was making another "to-do list". Seems she really likes making these things ever since she saw me make one when I had many specific things that I wanted to do one weekend. I'm so glad that she choses things like that to emulate. Anyway, all Ardena had on her "to-do list" was make Icee. Jessica wanted to add to the "to-do list". Her specific request was that she get to walk around in Princes Shoes with Logan and Sydney and Ardena. So we headed home and invited Logan and Sydney to come over to walk around in Princess Shoes.

It was loud, it was happy, it was kids picking on each other. It was: "Horray, Make way, for the Princess Shoes Walking Parade." Said over and over and over. And they played in the tent and they colored and the picked on each other some more.

It was wonderful. It was HOME.

Last night, Aunt Bette and I had a whole night of being up with Jessica about every 30 minutes because of her crying out in pain. It's puzzleing, because during the day, she mostly has fun. But she does have episodes during the day of suddenly gagging and crying and then the hickups start. Last night she was crying and pulling her legs up or stretching them like they are in pain and sometimes it looks like she holds her shoulders together. Today, her episodes of painful gagging were more frequent.

PLEASE pray that Tuesday's endoscopy procedure produces the answers we need and that the corrections needed will be quick and successful.

It's funny. The UNMC and Clarkson Hospital have a head chef that has a mission of making hospital food taste like restaurant food. This is stated in a recent newsletter that was published. Also, for food in the rooms, they have a thing called "At Your Service", where you call down to order your food like you would in a hotel for room service. I think they do a really good job (except for the coffee). I think that the Pediatric and Adult Gastroenterology Department must be trying to carry this mission over into their Department. The name of the location that we are to show up at on Tuesday is called the Endoscopy Suite. Like a Honey Moon Suite.

I wonder if this is a nation wide effort. I read somewhere recently that the likes of Katie Couric were incouraging wives to show how much they love their husbands by scheduling a Colonoscopy for them when they get a certain age to help catch Colon Cancer early and therefore being able to successfuly treat it and therefore being able to keep them around for a long time. I think the age is 40 - so Tim might get an interesting gift certificate soon that lets him know I'd like to keep him around for a long time.

AND after reading about the stated missions of making the hospital be and feel more like a restaurant and a hotel - my ideas of having a deck on top like a cruise ship seems right in line.

Friday, November 19, 2004 6:48 PM CST

Jessica has gained so much weight that she is now straining to fit into the diapers and pullups that used to fit very loosely. I purchased the "GoodNights" that they make for older kids for bed wetting. They fit great. They fit kids that are 40-75 pounds. So, I'll either try to use up the ones that are a bit snug before it's too late OR some MOMs will get some free stuff from us.

She still looks very good, even though she is having the problems that she is having. And her blood work today looked really good. Her ANC is above 1,000. Her hemaglobin holding at 9.5. Platelets still on the rise at 89,000.

We now have a date and time for GI proceedures. It was interesting. Yesterday I left messages with the Ped GI nurse and she called back and said that the person that does scheduling was out sick for a couple of days, so they did not know when it would be scheduled. My thought that I expressed was that it seems odd they would have just one person that can do scheduling. My question to her was why someone else could not get it on the schedule, what if the person was sick for two weeks? -- she did not know.

Then today the Oncology Nurse Manager called and said that she had not heard from GI yet. I told her that I had and told her what I had been told about the person doing the schedule being sick. AND being the wise nurse that she is, she said, oh, that's not good enough, I'll have to call and get this taken care of. My response that I was hoping she could take care of it because I was not sure how much time I should give it before I should try to get something done and I wasn't sure, with my sleep deprived state, if I could be assertive. I envisioned that I would either be crying or assaulting someone if I tried to deal with it. So within a few minutes we got a call and was told it is on the schedule for next Tues.

AND then I got a parking ticket in the UNMC garage fining me for $25 for not having a valid permit displayed. Who knows what they were thinking. They thought that I was an employee and therefore am supposed to have a permit. Visitors do not need permits. So, I'm assured that it will be voided - I asked for a note in the mail stating such, because after two weeks, if the fine is not paid, they up it to $50. Maybe I should pay the fine and then asked where I should go pick up my pay check. I'm sure all the 24 hour shifts should add up to a whopping pay check.

I did a lot of thinkging about this staying close to UNMC in a small hotel room. It's so cramped. And when you are tied to taking care of a small child, you can't leave and get a cup of coffee without hauling them and all their stuff with you. AND the issue I'm having with the coffee here is that there are not REAL COFFEE CUPS anywhere. ALL styrafoam. AND I think the coffee in the cafateria really is bad - bitter and too strong. (coffee on the floor/clinics is decent) AND there is no where to really organize our stuff. All the medical supplies and all the clothes and things - just all over the place in boxes and suit cases. My suit case is 22 years old and the wheals are worn off and the inside liner is ripped and the dog at the farm ate a corner of it and it's eally getting to me. So I went out yesterday and today and tried to make the place more comfortable. Drawers and coffee pot and answering machine. AND I wondered why I didn't do this earlier. AND then we were told late this afternoon that we would probably be made to move out over the holiday. So now I'll have to pack it all up in our Explorer and hope that we can get another room the week after next when we are scheduled to start radiation therapy. AND just why is it that a coffee pot and an answering machine is what I felt I needed to make the place more comfortable? Maybe that's just the things I thought I could get away with. A toaster and microwave and frig would all be nice too. And while we are at it, a cat and a computer and a yard. AND my husband and my other daughter.

And being a mom with a kid surviving cancer, I wonder if I even have the right to complain about a lousy cup of coffee. My cousin Kim put it well today, about wondering if anyone cares that you were upset about your hubby leaving the toilet seat up - when you know that there are far more serious things going on.

I know I'm in this "grump and groan". I know I get really down about wondering if Jessica will be o.k. I worry if we are doing what is best for her. There is no crystal ball. I worry about Tim and Ardena. I know he is doing a wonderful job. But it bothers me that it seems easier on them if we are not home. BUT with winter coming, it would probably be best if we did not try to be on the road between Lincoln and Omaha every day. BUT I don't think that's really it. It is really easier for them to focus on all that they have to do on their own if we are not in the way. The truth is that I'm not much help to them. My hands are more than full with keeping up with Jessica's needs and they end up helping me. And I know that every other mom with a kid with cancer is dealing with the same thing, but it just does get to the point that your simple prayer to God is just that you can keep up and keep doing what you need to do because you feel like you are going to drop dead or go crazy and you worry who would take care of your beautiful child then. I know that Grandma Jeanne and Aunt Betty and all our family would do what ever they could. It's just a statement of my exhaustion.

O.K. --- I just have to let myself not think about all of this too much. What ever happens happens and we'll just do what seems right at the time and know that we are all doing our best.

We will miss getting to celebrate Great Grandma's Birthday with the rest of the family. Happy Birthday Great Grandma Reba. It's interesting. We all think she's 90, but her birth certificate has been creased in a certain spot, so the year isn't clear. The date it was processed says a different date that makes it seem that she is a year younger that she has thought all these years. Hmm. That kind of mix up is not all that uncommon for her generation.

Wednesday, November 17, 2004 3:37 PM CST

We have moved rooms, but are still at the Nebraska House. See info below.

Still no word about any plans hammered out to get Jessica's GI issues investigated further. I'm getting a bit frustrated with the waite.

I'm also very tired. Sleep deprived. Jessica is still crying out many times during the night. She seems to be in pain.

Grandma Jeanne is also very tired. She needs to drive home tonight to make it to her dentist appointment. My mind will be heavy worrying that she makes it safely home.

I'm also very lonely for my friends. Julie and all the MOMs and the other Moms at Blessed Sacrament. I'm lonely for Tim and Ardena and being home. It was so wonderful being home this last weekend and getting to visit with Carol and Brian and my neice and nephews.

Tuesday, November 16, 2004 9:46 PM CST

The cultures that were running showed that a change in antibiotic was needed for Jessica. So, now I have to keep up with a 4 time a day I.V. Antibiotic, a one time a day anti-fungal, and I.V. nutrition, trying to get stool samples, as well as make it to labs, and chase a three year old and try to get some sleep and take care of myself. Something had to do, so today, it was the shower that had to be skipped. I feel really in need of a good soak. There are no bath tubs here and I think the last time I got to soak was in August. Well, I might have taken one bath, but I don't remember it too well.

Also, her ANC (her "Counts") was heading down again, so I wouldn't be surprised if need another Neupogen infusion soon. Like tomorrow. That takes two hours.

I am still so glad that Grandma Jeanne is here to help. I really need to have her trained to do the I.V. meds as well. Having just one person to do it is just too much. At home, Tim learned to do it so we could trade off.

Grandma Jeanne has been doctoring a really sore tooth and will go home tomorrow to get it pulled. Please pray that she has a successful procedure and that she heals well.

Aunt Betty will come to Omaha to help Jessica and me. Jessica is really excited. I am as well. BUT, I don't get to wiggle all over and get all excited the way Jessica does, without looking really strange, that is. Jessica was trying to talk about Aunt Betty and she forgot her name for a while and she was trying to get Grandma to figure out who she was talking about. You know, she's like you but shorter. That was what finally clued Grandma Jeanne into knowing who Jessica was talking about.

AND we still haven't had any firm plans for the scope issue. I don't think the two docs have been able to hammer out a plan yet. Jessica hasn't been able to keep down even just water the last few days. It's a hard place for all involved to be. We are needing to balance the need for anti-cancer treatment with the need to see what is going on with her digestive system. Please pray that all involved will have God's loving guidance in knowing what is best for Jessica.

Monday, November 15, 2004 8:11 PM CST

I lived a little on the edge and decided to stay home one more night. How sweet it was last night to get to tuck them in bed. Our ritual is to have me go in and give "mega hugs and mega kisses" just after Dad says prayers with them. Oh how sweet it is to be able to wake up and cook breakfast for Ardena and help her get ready for school. Ardena absolutely loves the way I cook her egg whites.

So then Jessica had to try to make it on time to Omaha for labs. We would have made it on time except that while on the interstate, her pump started beeping because of a blockage of some sort. Then she got nauseated and had to have me pull over a couple of times to help her. So we got here a half hour late.

Then our 1100 meeting with doc had to be put back until 2 PM because of some other issues with the clinic that they had to deal with. Doc explained that they had a new patient and had to focus on them. I don' mind that. I know how it felt when we were first dealing with this. I know they gave us extra time here when we needed it.

Her Oncologist wants some more consult with the Ped GI. He seemed pretty surprised that she hadn't been scoped, like he had requested. He feels that something else might be going on with her. Time is being watched. If we can't get Radiation Treatment going because of GI problems, Doc wants us to start CIS Retinoic Acid Treatmens before beginning Radiation. It really is important to not let too much time slip without any anti-cancer treatment being done. Also, cultures found something else besides Urinary Tact Infection AND Pancreatitis. They found some kind of not so nice bacteria in her stools. So now we have to watch that and try to catch stool samples once a week. It's seems strange to me that she has all these issues now.

I was wondering, with all her old bone marrow destroyed and new bone marrow growing and all the blood products that she has recieved - what part of the body stores the childhood immunizations that we all get. If it's the bone marrow, then her immunization might have been wiped out. So I asked the question to Dr. Gordon today. It's not exactly the bone marrow that stores that information, but it's some part of the blood. So--- basically ---Yep, she will need to be revacinated about a year from now. Also, she has to wear a Medical Alert Tag for IRRADIATED BLOOD PRODUCTS ONLY. I'm not exactly understanding what this is all about. Something about her immune system and if a certain something is brought in by another person's blood, the blood products could cause some kind of graft vs host disease. I might be really messing up that explaination.

So we are back at the Nebraska House tonight. Might have to have her scoped tomorrow or the next day.

Sunday, November 14, 2004 9:18 PM CST

One of the presents that Santa AFLAC gave Ardena is a Slushy Maker. I've never seen kids so excited. But I do remember how cool it was that our neighbor kids, when growing up, had a cool coke fountain toy.

Anyway, I agreed to do the Slushy Machine with the kids. It took a whole hour to read up on how to assemble and then when we got all 14 parts together, it didn't crank. The blades had frozen to the aluminum cannister. It took us a while to figure out the problem. So we added the orange pop and then it started to crank. Too well. Turns out that the pop should have been already cooled. So then we had to disassemble and add more ice. And we cranked and fought over who's turn it was and screamed and cried because it was just the funnest thing on the Earth to crank the Slushy Machine handle. To help all the cousins control the urge to cry and fight, I enlisted all of them to help count the cranks. Each kid got to crank 30 times before the next turn. The machine only holds one can of pop at a time. So finally we got slush to serve. Then it was a fight over who got the biggest cup. Then Emily dumped her spoon full on the floor. All were excited to finally get to taste the best thing ever - and we discovered that all the cranking and sloshing and turn taking caused the salt loaded water from the ice chamber to spill into the slushy part. So all the kids decided to ditch the Slushy Machine and started playing chase and running all over the house while Tim and I discovered that the Slushy Machine and it's 14 parts are not dishwasher safe. So Tim and I did the dishes from our Slushy Party. All of that for one can of pop. The kids had a ball.

Sunday, November 14, 2004 9:37 AM CST

One doc thought that we should stay close over the weekend. Two docs thought that we could go home for a while. One said that he thought that we knew enough of what to look for that we would get her back to Omaha in time for needed attention if anything came up.

So we came for another over night. AND we decided to bring some of the build up from the room because we really dont fit anymore. Bag after bag after bag of stuff. Just stuff. I am so glad Tim came up yesterday morning for the Holiday Party and then he could help me pack the stuff.

The Holiday Party was very nice. Santa couldn't come, but lots of presents were there. Jessica's favorite is the PlayDough Factory - Beach Buggy. It was wonderful to get to visit with the parents and kids that we have met along this journey. Camer was there. Alijah. Sitori. Braxton. Rae's Boy. The Swamp Donkeys are playing for a benefit for Cameron Nov 27 in Garland. See poster: www.caringbridge.org/ne/camer. Also, many of the members of the medical team were there. Jessica gets such a thrill as seeing Dr. Grovas. She almost calls him Daddy when she first sees him, because he resembles Tim a lot. Dr. Gordon was not there. He has been off service for a week, but we will see him soon. Sue Nuss and Jeanenne Kean were there. I their title is Clinic Nurse Manager. They really are wonderful to work with.

On the way home, Jessica had some specific requests that she wanted to do. Go through a car wash and then go eat lunch on an air plane. We did get to go through a car wash.

When we got home, she chased the cats all over the place. Then her cousins came, Seyen and Caylen, and they had a ball. Looking at rock collections and playing Old Maid. Jessica got tired of the card game so she took to running through the area now and then, grabbing a card out of my hand and tossing it up in the air and running off. After the card game she and her cousings were playing case in the house and Jessica decided to use me as a body catcher. It felt like I was being hit by a line backer. She has really put on the muscle and weight. She is growing out of the sizes that Aredena wore when she was 4. If she had hair and if she didn't get waves of nausea/vomiting, you would never think there was anything wrong with her. She is really looking good.

Jessica was very upset that Ardena was not home. But we are having a soup lunch today and having over Seynen, Caylen, and Emily. That will be fun for Jessica.

Tim tells that Ardena was so excited to go to Aunt Carol's that when she got home from school at 3:30, she got out of her school clothes, put on full winter gear (coat, snow pants, hat and gloves) and camped out on the porch waiting for Aunt Carol. Carol wasn't set to arrive until 7 PM. It was 60 degrees out. She came in for supper, but then went out and camped on the porch again. Guess she declared that she was hot after a while.

I had some time to look more up on Pancreatitis and the enzyme levels that point to that diagnosis. She was low on Amalayse and High on Lipase. Spelling is not my concern right now, so it may be off. Anyway, most times Pancreatitis has both of those enzymes elevated. That is why it was puzzling and not for certain that she actually had this. But I found something on the MERK last night that supports the pancreatits, because when a person's triglycerides and high, it can through off the tests and lead to a false low or false normal on Amalase. Jessica's triglycerides were high. Also, she was on Morphine when this most likely had it's onset, and that is probably why we didn't see the usual pain response.

Jessica really wants to eat. And now that she is at home and sees her usual favorites, she really wants to eat. She started crying yesterday because she couldn't eat the Salisbury Steak that I make. That is one of the kid's favorites - it's from Grandma Flossy's recipies. She did get herself calmed down about it by feeding Tim. I'm so glad that Tim is the kind of Dad that lets his kids do these things. She really got satisfaction out of helping him eat. Eating Vicariously. That could be the newest dieting rage. Lets write a book about that.

Aunt Connie and Uncle Chuck sent down a ham a while back. We got that out a couple of weeks ago. It was so good that now Ardena won't eat any other kind of ham. I sure hope I can remember the brand. I got out the Banan Bread that they sent for this morning. Thank you Aunt Connie and Uncle Chuck. It is so nice having home made stuff in the freezer that I can pull out.

Friday, November 12, 2004 6:59 PM CST

I'm on one computer in the Resource Center and Jessica is on the other. She has made a wonderful picture in Paint program. I said to her, "You really made something didn't you." Her response was, "I'm just doing my job."

We have been discharged. The Pediatric GI was on a plane to a conference when I called his office. I left message with the Radiation Oncologists pager and told him to call, even if it is late. Well, the Radiation Oncologist called and said that as a result of consult with Ped GI, that Radiation is On Hold for two weeks. The Ped GI feels strongly that the enzymes need time to return to normal before stressing the area more with Gamma Rays.

So, maybe after Monday labs we'll return home for two weeks. The thing that's crazy is that it is almost time to schedule the 60-day scans. That takes about a whole week of one or two things every day. So, maybe we'll be home for just a week.

The marks that the Radiation Oncology Team marked on her tummy are starting to come off, so we went over to that office so the marks could be redrawn. They redrew the marks with a type of paint this time. Also, they put more Tegaderm on her tummy to help hold the marks.

I'm feeling nervous about it being so long until the Radiation Treatment will start. But I understand that stressing the organs with Radiation should only be done after they are settled down. This is a hard place to be. Right now, no anti-cancer treatment is being done. Please pray that no relapse happens between now and the time that Radiation Treatment begins or ever.

We are still on I.V. nutrition (TPN) and also now on I.V. antibiotic and I.V. anti-fungal. These are things that I have to administer. With a three year old that wants to be on the run, we pack the TPN in the back pack that is specially designed to hold the bag and the pump and then I also have her hooked up on another pump (a syring pump) for the other meds. I have all the other stuff packed along too, so that when one syring is done, I just start the other, and then we keep going in the halls all over the place. No slowing down for Jessica.

Tomorrow morning, she has been invited to a Holiday Party for the kids and UNMC Cancer Treatment Center. I think that AFLAC sponsors this party. AND........Santa might be there. That will be way cool for Jessica. I'll have to tell Santa to remember when he came to her Birthday Party in July and to ask Jessica how her Raindeer is. This weekend, Ardena is going to Aunt Carol's and I hear that a roller skating party is in the plans. Thank you, Aunt Carol.

I've got a three year old that need to be on the run.

--Toni

Thursday, November 11, 2004 10:02 PM CST

It's kind of funny what a child that has gotten frequent gifts and prizes thinks is normal and think is what is expected. She thinks that when ever anyone walks into the room with a bag with something in it, that it must be a present for her. She put up a crying fit last night because I told her the bag that I had was just something for me. I finally had to let her look into the bag just to get her to calm down. A box of Tampax Tampons. She declared that it really was for her. The box had such nice bright colors on it. AND she grabbed on to it and hid it behind her back and she was not going to give it up for nothing. Why can't those boxes be decorated like a generic box of macaroni and cheese? I felt really silly trying to wrestle a box of tampons away from a three year old, so she won. She got to play with a box of Tampax Tampons.

I thought I'd give some information in case anyone is wondering how I got so many pictures in the photo area. Caring Bridge lets authors only upload three photos. BUT I found that there is a program on the photo CDs that we get when we get our film developed at Walmart. It's the FIGI Film thing called "Picture It!". You can open a photo and size it down with drag and drop and then you can do Add Something feature to add more photos and then size them down so that you get a whole page of photos. Then you can add text and shapes and stuff and then you save it out as a JPEG file and then it will upload into Caring Bridge as just one photo. I made three photo collages and then uploaded them.

With the antibiotic running for the UTI and hydration, she looks like a whole new child. Lots of energy and feeling good. She still has episodes of nausea. She did not have any stool today. Still not keeping much down. Maybe a couple of sips.

Radiologist thinks that the area in her inferior vena cava might be a blood clot, but that is not for sure. The blood work so far has indicated something with her digestive enzymes. Maybe pancreatitis - maybe not. The Oncologist doing rounds this week thinks the area in her inferior vena cava can be delt with later, thinks she is ready for discharge, even though no scope or upper and lower barrium studies have been done. So, she is scheduled for discharge tomorrow and that Oncologist is saying she is ready for Radiation.

I'm thinking that maybe going ahead with Radiation at this point is a good thing. I'm not sure it's really pancreatitis, but it does act that way (from what I know of it) and giving her more time to work out of it may be the best plan. I know that scoping can make pancreatitis a whole lot worse.

I've tried to read up on it just a little. The lab that was high, from what the doc said, was just a little high. The other pancreatic lab was not high. So from what I read on the web, this could mean several different things. Could be as simple as her using Heparin in her line, high triglicerides in the blood, mumps, pancreatitis, gal bladder blockage, infected salivary glands, or even intestinal blockage. Seems to me like nothing can be really determined at this point.

We'll have to see what Dr. Antinson says about the findings so far. He is the Pediatric GI Doc that I am pleased is on her case. It will also be good to see what her primary Oncologist says about all the findings. Also, the Radiation Oncologist wants to consult with Dr. Antinson before going ahead with Radiation. We don't know what Dr. Antinson thinks at this point because he was not here today to give his input on findings and decisions.

It does bother me that when admitted to the floor, you get the doctor who is on rounds - usually not your usual doctor. It's not that I disagree with the doctor who was on rounds this week, it's just that his decisions are different from the ideas that her Main Oncologist had, and it seems a bit different from what the Ped GI had in mind also. But I struggle with the delay it will cause to have her scoped now. If that was done a couple of days ago, we'd have results from that now. But now I'm thinking starting Radiation is of priority.

It was funny today. I spoke with the Radiation Oncologist to ask about reviewing the Radiation Mapping with him. I need to see the plan and agree that it makes sense to me before I can feel like I'm being the MOM that Jessica deserves. The Radiation Oncologist said that he did need me to do something for him and that he was sure I wouldn't let it slip. He does have a bit of an accent, but I can bend my ear enough to get the message. What I think he said to me was that he considered me to be a Obsessive Compulsive and Neurotic Mom, and that he thinks that is a good thing, because he knows that means that I will do anything to make sure that my child is taken care of. He asked me to have the Pediatric GI page him tomorrow so that he can discuss the findings with him - he does not view himself as knowing enough about all of that, so he wants Dr. Antinson's interpretation of the results so far, since Dr. Antinson is the specialist in that area. I am so glad that I am considered Obsessive Compulsive and Neurotic and that it is a good thing. I don't disagree with him. Sometimes it is a good thing to be that way. In fact, I'll be so Obsessive and Compulsive and Neurotic that I'll call Dr. Antinson at his office if he doesn't come for rounds before we are discharged and make sure he gets the message to page the Radiation Oncologist. Hurray for Obsessive Compulsive and Neurotic Moms!

When we get discharged, maybe we can follow up in Oncology Clinic as well as Pediatric GI Clinic.

Wednesday, November 10, 2004 9:08 PM CST

Still no firm answers for what is going on with Jessica. Analysis shows some bacteria and other biproducts of possible infection in bladder. Don't know which bacteria, but docs have started her on an antibiotic that will be a good guess until they know otherwise. That may take 5 days. This possibility of bladder infection contributing to the liquid stools does not surprise me because this has happened before to both of my daughters. Seems that bladder infection, like any other infection, can lead to liquied stool because the infection causes the digestive tract to not be able to handle food as well.

When awake and feeling well, she is having a ball with the wonderful staff on Seventh Floor University Tower.

She will put up a fight when she does not understand what is going on. We always have to link it to something that she understands. When Ultra Sound bring in their big machine - she is first afraid, but if I can tell her it's the machine with the magic wand that can see inside her tummy, she calms down and goes along with it. If she is upset by having to try to drink contrast, I explain that it helps her insides glow in the dark so that the donut camera can take a picture of inside her tummy. If we have to collect her pee, she resists, but when we explain that the doctor needs to test it to help us figure out the skooby doo mistery of her cancer, she will think it's o.k.

I do not feel that a bladder infection is responsible for all her her issues. She still has persistent vomiting and cannot hold anything down except small amount of Gatoraide.

I am pleased with the Pediatric Gastroenterologist who came to evaluate and recommend. He is the same doctor that helped us figure out some of what was going on with Ardena when she was an infant. The plan for Jessica is to check for Pancreatitis, Gastritis, Gal Bladder, Parasite and Ovum, Virus and Bacteria, Ultra Sound, and Barium of upper and lower and then if that does not reveal any firm answers, a scop of upper and lower and after that - address what ever might be found. I wonder how long this will all take. I am pleased that it seems like such a well planned and complete evaluation.

Ultra Sound of abdomen was done today. I do not know how the Radiologist read that yet. The technician found an area on her Inferior Vena Cava that looked unusual. Tech wondered if it was her central line or possibly an area where a line had been. But it seemed further down in her abdomen, so who knows. I wonder is that is a left over from the surgery to remove the tumor. I recall that the tumor encased some of the veins like that.

I do recall that one Radiologist read an X-Ray as showing her past line tip in the Inferior Vena Cava. The same past line was viewed by another Radiologist as being in her Right Atrium (top) of her heart. When Mom, Me, Med Student, Oncologist, and Surgeon viewed X-Ray of that same past line, we all thought it was in her Right Ventricle (bottom) of her heart. That line has since been replaced. But the issue that is still in my ming is how that same past line could be viewed by different people to be in different places. I will discuss this with Radiologists involved because if things are being missed - that is important to know and to review to avoid in future. What if the line actually was in those different places? Then I would wonder if her heart or veins have been damaged by a line that was going all over the place. Surely that can't be the case, I would expect that she would be having more issues if her heart or vein was perforated.

Also, I think about how that past line migrated into her heart. I think it migrated about 3 inches or 4 cm. That line did not work well since June. I wonder now why it is not standard practice to measure how much of that line sticks out of the body when it is first placed and then making weekly or monthly checks of that length. If that is standard practice, I do not think that was done. Never did I see anyone monitor the length of that line and chart it, the same way her weight and blood pressure and temp, etc. were monitored. If that were to have been done, I think the problem may have been detected and corrected sooner and would have saved her many, many, many, pokes and crying episodes.

So, that is in the past and now we are dealing with something else. The delay of Radiation Therapy is also a concern. It is being cautious to delay it until the intestines/digestive tract isssues are worked out. Stressing her system with Radiation when something else is also possibly going on could be dangerous

BUT, it also concerns me that Radiation is delayed because of the potential for the cancer to return because it is not being actively addressed/faught at this point. The phase of treatment that she should be in right now is all aimed at preventing the cancer from returning. And remember, this cancer is very aggressive and high risk for returning.

It's a hard place to be for all involved. I'm sure the medical professionals have to grapple with these kinds of scenerios every day. Benefit/Risk balance.

Still in the plans is more blood work to check for Pancreatitis, Gastritis, Gal Bladder, Parasites and Ovum in stool. Then if nothing is revealed with all of that, barium exam for upper and lower GI tract and then scoping upper and lower.

Also, we are getting to the point where all the other scans need to be repeated. We have a battery of scans at 30 days post transplant, at 60 days, and at 100 days and then I'm not sure how frequent to check for relapse. I think it may be every 3 months for five years. And then it may be once or twice a year for the rest of her life.

I do need to look into the issue with reliably scheduling and getting Anesthesia during the MIBG. Her not responding to the I.V. anesthesia is not the only reason that it might be a day that will not be forgotten. Recall the time before the last time she had the MIBG done. How Anesthesiology had some emergency and never showed up, but she fell asleep and we got a good scan anyway because she was the Real Sleeping Beauty.

Well, for this last scan, my experience was not of a well coordinated and delivered service for my daughter. Anesthesiology was supposed to show up at 1:15 and the scan was to take place at 2:00, according to what I was told the day before. When 1:15 came the Nuclear Medicine staff told me that Anesthesiology had been delayed, were on another case, then had to go somewhere else, and then their next case was at 2:00. I responed, УNo, their next case is here with my daughterФ. I didnТt understand how getting anesthesiology to show up reliably for a planned scan was so difficult.

The first time this scan was done, we met the Anesthesiologist in a room on a hospital floor, Jessica got familiar with the room, the Anesthesiology did a history and check of her, and all went smoothly and then we returned to the room she was familiar with for recovery.

For the last two scans, we show up where the scan will take place and it feels like we are expected to just hope that they show up on time. This does not seem right to me. Nuclear Medicine staff said they didnТt know what to do, that when they call the person who is supposed to coordinate for Anesthesiology, that they say they do not know when they will get there, they didnТt know what to do.

In my mind, this is a test that is based on a Radioactive material that has been injected in my daughter. The test is the best test known for detecting Neuroblastoma. The Radioactive material will only be active for a specific time. So, the scan must be done on time. AND the person must lay still for the scan. No three year old that I know of, who is awake, can lay still for a whole hour. So, for GodТs sake, why canТt an Anesthesiologist be reliably scheduled to show up on time.

AND I do need to point out that the issue or failure can be happening at any point during the process. So my response was, I know what to do. I called and asked to speak with the Medical Director.

While I was on hold, the Anesthesiologist showed up. I hung up because it was taking too long on hold. He walked into the room where the scan was planned to take place. He was checking for equipment. There was no suction, no monitoring devices, no anesthesia, no nurse, no electrical outlet close enough to the scanning machine, no air ----- NO NOTHING SET UP FOR ANESTHESIA. So, he goes to the next room where another scanner is and the equipment in there seems broken. No oxygen. No nurse. I say to the Nuclear Medicine staff that this feels very uncoordinated and that something is not right. I ask the Nuclear Medicine Staff why they do not have the room set up. Their response was that Anesthesiology usually brings a cart with them that has all of the equipment. I ask where the anesthesia nurse is. They tell me that the nurse usually comes with the Anesthesiologist.

I then ask the Anesthesiology why he does not have his cart or nurse with him. He says that this case was on his schedule for 2:30, and asks if IТm o.k. with him coming back at 2:30. I respond by saying that if the Radio Active material is still good enough to give a good scan, then I am comfortable with him coming back at 2:30 because that might give everyone involved a chance to get their poop in a group.

2:30 comes and they have not returned. Nuclear Medicine staff page him. They do finally show up. The monitor that they bring will not let them set for pediatric monitoring and they do not have the right size blood pressure cuff for Jessica. They get another one, it does not work. They get another one and I think it may have worked, but IТm not sure how reliably. It was news to them that she was nauseated and vomiting bile. They were concerned for her air way. She went through all the I.V. anesthesia that they brought and still did not go under. It was 3:30 at that point.

Radio Active material becoming inactive is my concern. We are told by Nuclear Medicine staff that the scan should still be good if done by 5:00 or 6:00. Finally at about 4:00, she is under and the scan is being done. I believe that it was done by 5:15. They we were moved to a recovery room, who it seemed to me was not expecting us, and there was no bed for her.

So, I have lots of questions as to why, two times now for this scan, Anesthesia was not reliably scheduled and delivered. AND, IТm not sure the fault lies with the Anesthesiologist. Maybe it was not scheduled enough in advance. Maybe the person responsible for the coordination put in on their schedule wrong. Who knows, but something went wrong Цtwice, and I do not want it to happen like that again. AND I want to know who I can call if something like this happens again.

We have to get this same test done multiple times because it is the best known detector for Neuroblastoma. If the scan is not done correctly, it puts her life in jeopardy. We need to know if itТs there, if itТs returned, so that it can be treated quickly, because itТs such and aggressive cancer.

Two days later, when Radiation Mapping was scheduled, the Anesthesiolgoy Team was there and set up and ready before we even got there. So, my question is Ц How/Why/Who got that set up so efficiently and reliably and How/Why/Who can get that same efficient and reliable scheduling done of Anesthesia Team for the next MIBG scan.

I also feel that at the very least we deserve a formal inquiry into the mishap and results of that inquiry and a formal apology. Because ultimately, they were messing with our daughterТs life by not having things reliably scheduled and delivered.

So when people wonder why I want to see for myself the X-Rays and Schedules and Reports and Treatment Protocols and Planned Mapping Ц I think these events as I see them explain my reasons very clearly. As one Cancer Mom recently wrote, ....you learn as a Cancer Mom to look for yourself.

I still need to remind myself that these types of error and mixups are not reflective that a bunch of ding dongs are running the place. To the contrary. These medical professional are all highly trained and skilled. These types of errors and mixups most likely reflect that this is such a complex and ongoing medical case. If I were to compare all that has gone right with all that has gone not so right, I would probably see a very low error/mixup rate. BUT STILL, as a cancer mom, you learn to look for yourself, because an extra set of eyes is always a benefit to our beautiful children.

Tuesday, November 9, 2004 2:35 PM CST

I came home to stay with Ardena last night. I must say that she did a really good job of getting ready for school in the morning. She really wants me to pick her up from school today. It felt really good to read with her before bed. I was wonderful to smell her hair. I really miss getting to be her MOM.

Tim stayed with Jessica in Omaha. Getting the hydration going and the nausea medication more regular seems to be helping. She still is not peeing like she should. Also, still liquid stool. Culture results are not available yet. Only a lot of speculation still as to what is going on. Maybe a virus or c. dif bacteria in the intestines again. Maybe some damage that has not healed or that won't heal to the digestive tract from the chemo and stem cell transplant.

Grandma Jeanne was there this morning and Jessica asked her to read a book with her. Grandma said that we forgot all the books in the hotel room. Jessica suggested that maybe they could rent one from somewhere.

I got to have lunch with my friend and her daughter today. Julie and Ella. I just love getting to make faces with Ella. I really want to be home soon so that Jessica and I and Julie and Ella can hang out during the day.

It really gets me now much something as simple as the smell of my child's hair or getting to hang out with a friend means so much.

Monday, November 8, 2004 7:20 PM CST

I wish I could say that the first day of Radiation Therapy went well. But I can't, because it didn't take place. Her Oncologists have delayed the start of Radiation Therapy for now.

Jessica is not doing so well. She has been admitted so that she can be hydrated well and monitored and scanned and scoped and cultured to see if what is going on has a clear WHY to it, so we can know WHAT to do about it. Last night at 1:30 AM she woke crying and seemed in pain and just kept waking up and crying out and trying to sleep. She has also developed a low grade fever and liquid stool and seems quite dehydrated and mainly she just doesn't feel good and is very listless and crabby and her head hurst and light hurts her eyes and she doesn't want to move. She still can't keep anything down but Gatorade and become nauseated, even with an empty stomach. Hmmmm.

Saturday, November 6, 2004 9:16 PM CST

We spent our first night together since mid September last night. It feels soooo good!

Our arrival was loud and rowdy as Logan and Sydney and Erin were infront of their house and came down to great us. Ardena and Daddy came out of the house and we were honking our horn. Everybody just giggled and giggled.

When we got in the house, Jessica just hugged and hugged and hugged her Daddy and then looked at him and said, "Look at us, Dad, look at us." Then she hugged him again and said to Ardena, "Look at us. We are a family again."

Jessica and Ardena went into best pal sister mode quickly and made up a to do list. First on their list for the next day was to "sleep in for five minutes".

Our plan for today was to shop for pants for Ardena as she has outgrown most of her clothes. She still fits in them, but the pants are too short. We also made a pit stop at our wonder Pediatrician's Office and got Jessica a flu shot. She wasn't too happy about that, but at the end, she was more upset that she couldn't tell where they had done it. So then we were going to get pants and Jessica wanted us to park the car because "things were spinning". Tim thought that he noticed a tilt to her neck this morning. I just thought that it had something to do with her strange gaite lately, but it turns out that it was the first sign she usually shows that she it getting a migraine. The next sign is usually that she says the room is falling or spinning. So, she got a migraine today. We took Tim and Jessica home to tend to her migraine and Ardena and I went shopping for pants. Then Ardena and I went to church and then out to Long John Silvers and when we got home, Jessica's migraine was gone and we are all having fun again.

Her doc ordered I.V. Zofran for us to administer. That has really helped control her nausea to the point that I thought it was safe to come home for a night. It also came in handy in managing her migraine. Also, her ANC was at 1,000 on Thursday evening, so seems her bone marrow is starting to produce more white blood cells. The last she got any Neupogen was last Sunday. So, she has improved from needing it about every other day to just having it once all week. We used to have to give it to her with a shot in the leg - which is very painful for her and quite the ordeal for us too in getting it done right. Since her transplant, she gets it in her I.V. Same dose as the shots, but over a two hour period. It's written like that as part of the treatment protocol for the study she is in. No one seems to know the answer as to why the study protocol says to give it I.V. over two hours. The standard is that it can be given I.V. over a 30 minute period. My best guess is that is has something to do with her getting Purged Stem Cells instead of Unpurged Stem Cells. The purging process can bang up the Stem Cells a bit and cause them to be more fragile and it takes them a little longer to egraft and grow new bone marrow. My guess is that the Neupogen is given over the two hour period so that it isn't such a stress on the newly growing bone marrow.

Well, another evening home with our whole family is in store tonight. It's SOOoooooo Wonderful!

We will go back to Omaha tomorrow night because we have lab work early on Monday and then her first day of Radiation Therapy. This will go on for about 3 weeks, for a total of 14 treatments. There are some days in those three weeks when they need to give her body a break.

After that is the next phase of her treatment where we are considering the Monoclonal Antibody Treatments.

Please pray for a successful Radiation Treatment and Please pray for our hearts to have answers for the next phase of treatment.

Thursday, November 4, 2004 7:08 PM CST

Jessica is so excited and proud of getting a certificate that invites her and her family for a plane ride. She says she is excited because we can be a whole family in the plane. When asked what would be her favorite lunch, she responds with an hearty "RUNZA". What is interesting about this, is that Runza is what she wanted to have for lunch the very first time she asked Tim if she could eat lunch on an airplane. That was almost a year ago, and she has still held on to that.

Thank you! Thank you! Thank you! To all involved in making this happen for Jessica and our family. What a wonderful surprise!!!!!!!!!!!!!!

AND another example of what a small world it is. Grandma Jeanne had a lady call out her name today. Turns out the lady used to live in Ogallala. I was destracted with Jessica tearing all over the place when Mom was telling me the story, but I think the lady must have delivered a baby around the same time Grandma Jeanne delivered me. Now the woman works at Walgreens in Counsil Bluffs in the pharmacy and her son is a principle in Kearney or North Platte and her daughter (born when I was) is still in Ogallala.

This week has been packed with scans and tests every day. Some, several times a day. All three of us are worn out women. So, far every thing still looks clean. Meaning no detectible cancer. Tomorrow she will have a bone marrow test to see if there are any tumors there. I fully anticipate that there will be none. I looked for myself at her radiology file. And, from the ones I could understand (bone scan and MIBG) she looks clean to me too. The wonderful staff at UNMC Clarkson Nuclear Medicine said they are glad to allow me to view the scans with them that were taken yesterday. They did point out that I am the only parent that they know of who has asked to do this. Hmmm.

Yesterday is another day in history that the UNMC Clarkson Nuclear Medicine staff will probably never forget. Remeber about two months ago when the anesthesiologist couldn't get there on time and she actually fell asleep for the hour long test - The Real Sleeping Beauty? Well, no such luck this time and even more extreme than that. She was administered three different I.V. General Anesthetics and none of them even fazed her. She got droopy eyed for a while, but then was giggling, smiling, singing, talking of her boyfriend, Bryce. After an hour of trying to get her to go under, they finally had to pull in the whole crew and do a full, gas em up, type anesthesia with the airway support and the whole nine yards. That's our Jessica.

Tomorrow, we will have to go through all of that again, as she needs to be mapped for Radiation Therapy and also undergo a bone marrow asperate. I have now reviewed the Radiation Protocols and have my answers to where the radiation will be targeted. All areas where the main tumor was plus a margin on one sort and then another margin to account for potential movement. Sounds like a good plan to me. That ought to get all those little blue cells. Also, regarding the lung concern. Nope, never was it determined as cancer. Good.

Please pray for a good Radiation Mapping and successful Radiation Therapy for Jessica. Please pray for strength for Grandma Jeanne and I in keeping up with this demanding schedule.

I am so thankful we have a room at the Neberaska House. When we need a nap, we need it NOW. And boy do our feet hurt!

Jessica still looks very good. Doc is giving I.V. Zofran to help with her continued nausea/gagging/drooling/can't swallow or keep any food down business. Also, Doc is going to have a Gasteroenterologist take a look at her to see what might be going on with her gut/throat/mouth. The I.V. Zofran has been helping her keep down the contrast that she has to drink. She did o.k. with it in Gatoraide. Just as soon as she tried something else, up it came. Kind of acts like her stomach just doesn't know what to do with food anymore. So we'll stick with Gatoraide for now. At least it's something. She is still getting I.V. feedings and is not having difficulties with that. Also, she is gaining weight and looks very healthy. Can it be true that she is 10 pounds heavier since the tumor has been removed? From around 11 kilos to just above 16 kilos?

I think the most important thing is that she feels really good and plays and dances and is making friends. One of her new friends, Sitori, and her are talking about going to camp together.

The 24 hour Hematolgoy/Oncololy Clinic at UNMC is truely a remarkable and extraordinary place. All the nurses are specialized and experienced with cancer specific issues AND all the patients are all going through the same basic thing. She can socialize with others (kids, moms, dads, grandmas, and grandpas) there without worrying about being exposed to other illness that other kids might have. She gets her own treatment room most of the time, but they are arranged in a very open way, with huge sliding glass doors so that she can still see in the hall and visit. Also, when she wants to get out and ride her bike, she has the whole hospital that she can go, go, go in. GO JESSICA!

Wednesday, November 3, 2004 4:22 PM CST

Leave it to the WONDERFUL people at Duncan Aviation to make our day!

Whenever Jessie comes out to see me at work, she always asks if she can eat dinner in an airplane. And of course, the answer has always been no (I don't think most customers would want to have a little girl eating in their corporate jet).

Enter John Scully, who read about Jessie's wish in one of Toni's journal entries. He talked to Becky Showalter (our administrative assistant), who got in touch with Harry Barr (one of the original employees of the company who also happens to own and operate his own aircraft). Well, one thing led to another, and today John and Becky handed me a certificate entitling Jessie and family to an airplane ride to be provided by Mr. Barr (including lunch on the airplane). WOW! After that I just had to give the girls a call. The first thing Jessie asked me was what I was doing, and I told her that I was working on airplanes. The next question was whether I had found anyone who would let her eat lunch on their airplane, and for once the answer was an enthusiastic "Yes I did!" You can just imagine her response . . .

Just goes to show once again what a GREAT group of people I have to work with. Many, many thanks to John, Becky, and Mr. Barr for making this happen!

Tim

Sunday, October 31, 2004 8:32 PM CST

No going home soon planned. Next week, starting tomorrow morning, is packed with daily scans or tests of some sort.

Today revealed that her ANC is creaping down. Doc originally wanted to hold off again, but then decided to go ahead and give her the white cell stimulant (growth factor). I really didn't want to risk infection, so feel a lot better giving a boost to her ANC. BUT, I'm wondering why she isn't doing better on her own with white cell, neutrophil, and Seg production. She also is going low on Hemaglobin and Platelets are going down too. I won't be surprised if we need infusions tomorrow. Hope we can find time with all the other stuff we have to do. Also, the nurse today noticed that Jessica reacts to having her line flushed (this has happened many times before), but this nurse thinks it may need furthure investigation, so a thing called a catheter gram might be done. Nurse said she knows of a case where the patient reacted with flushes and it turned out that a large clot had formed. Thank you for being a concerned and experienced nurse!

I need to get my Doctor Mommy head on for some serious question raising starting tomorrow.

Question 1 - what tests or levels are being watched to know when Radiation is safe to do. I think that Radiation also causes suppression of white blood cells, red blood cells, and platelets. Sooo, my question is what level does her own ANC (without stimulant) need to be before starting Radiation.

Question 2 - tumor and post surgery studies showed that there were crushed blue cells in a location where lymph nodes are, yet it was determined as not identified as tumor in lymph nodes. At first I recalled that the blue cells were in a lymph node, but then I looked at report again and it mentions blue cells, but not sure what significance it has as far as mumor spread. I'm thinking that any time a blue cell is seen, that it means something that we really don't want. This is important because when mapping out where Radiation is needed, all these findings need to be considered. BUT the information that UNMC recieved mentioned nothing about the blue cells. Thankfully, the Radiation Doctor finds what I remember from the reports to warrant taking a close look at what is going on.

Question 3 - I just reread some of the reports today to find where I saw the crushed blue cells mentioned. YES, it is there, I didn't dream it up. I also noticed that one CT mentioned and area of something in a lung. Yet I don't think anyone has ever mention that the cancer spread to the lung. So, I don't know what that area on the report means, but I do think that, again, the information will be usefull in taking a close look in the next few days and will be needed for a good maping to be done for Radiation. It's hard to read reports and know what everything means. But at least I can ask them to take another look. No harm in that.

Question 4 - The tumor had surrounded the Right Kidney, and was spreading and encased Renal Viens and part of Inferior Vena Cava and possibly Aorta. So, does all of that area need Radiated. Hopefully not just where the Adrenal glad was removed. And a person might say, oh, we need to reduce radiation exposure as much as possible. BUT, I'm more afraid of this kind of cancer than I am of effects of Radiation.

And for those of you that know me, certainly you know that four questions are not all that is on my mind. I'd like to view and discuss the scans with the Radiologist. I'd like to have them explain what on the scans leads into their interpretation. I'd like full copies of all treatment and supportive protocols, so that an extra set of eyes can be of benefit to Jessica.

I wonder how many head aches I've given these doctors with my way of asking and my way of doing.

It is so hard being in the place that I am. I am not a doctor and do not have the training or education. BUT I am a bright person and feel like I need to know as much as I can to be the best Mommy I can be for Jessica. My deepest fear is that I'll be too worn out to read and understand and miss something that needs to be brought up.

All I have to do is remember to ask all of these questions soon enough to the right person. It is really hard to think straight when a kid is in the room demanding my attention and doing all they can do to fall off of something. All it takes is one screaming episode to derail a meeting and have me forget my focus.

So, now I'll just have my Mommy Brain on - not Doctor Mommy. HOW is she doing?

She looks great! Wanting to play hair fix with my hair and Grandma Jeannes hair. We found a toy hair dresser kit that has a blow dryer that works on batteries. She is thrilled!

We talked to Ardena tonight. She really misses us. It is so hard having to be here and knowing that she wants her family together so badly. I hope she doesn't give up on us.

I'm excited about a summer camp that is for young cancer patients and their siblings. Camp Quality. It would be so great to have them go to camp together next summer. We met a nurse today that is involved with that, actually I think she is the Director.

Now I need to see if I can find some way to print out this entry to use as question list for the docs. The Resource Room here does not have any printers available that I know of - so, will need to beg a printer from someone.

Saturday, October 30, 2004 8:01 PM CDT

Jessica started complaining that her feet hurt and refused to put on the new shoes. I rechecked the fit and it seems either her foot swelled a bit or the toe part of the shoe is too tight. Thankfully, since they were worn only inside, the store willingly let us make a trade. We chose a boot style that will allow for more adjustment. She HAD to have the red ones with blink lights. She likes them so much that she will not let me take them off. She even slept in them. She won't even let me take them off to put a pair of pants on her. And today the cold air came in. So I'll have to do some creative parenting to get that task done.

Grandma Jeanne and I relized that we were getting growley at each other. Actually me growley at her. I think it is because neither of us are getting any good sleep because Jessica cries out frequently in the night. Since we were all sleeping in the same room, none of us are getting good sleep. So, we got another room so that at least one of us can sleep a full night without being woken up.

Ardena and Tim went to the Pumpkin Patch today. Oh I wish we could have gone too. That was one of my favorite trips with the s last year with the MOMs group. The apple orchard was also lots of fun.

Friday, October 29, 2004 5:58 PM CDT

Dear Uncle Tony,

I love you. I went for a Halloween Parade today and saw Miniie and Mickey Mouse.

Love,

Jessica

Jessica calls this page her email.

We are still at Nebraska House, as her counts are way down. Doc wants to hold off on the white blood cell stimulant to see what happens. Before, the bowel infection made keeping her ANC above 500 a priority, but now it is probably safe to let it dip a little. Docs want us to stay close and have blood work done over the weekend.

The Halloween Parade was great! It was so good to be able to let her do a normal kid thing. The interesting thing is that we went and got her a costume to wear and she declared that the dress she already had was a Princess Dress, so she did not want to put on the costume. YES, Jessica, you are already a Princess and it IS already a Princess Dress. She also wanted to wear her pink sunglasses, so fit in perfectly with the Radiation Team she met with today who has all decided to dress 60's Style. They said she was the first patient to ride in on a bike. Such a trend setter.

Thursday, October 28, 2004 10:01 PM CDT

WOW! What a hug!

Jessica wanted to see her Dada today sooooo much. So, we drove to have lunch with him. She says on the phone while driving, "Get your lips ready because I'm gonna kiss you."

When we got there she just hugged and hugged and hugged him. And I could tell that Dada needed that hug just as much, if not more than Jessica did.

Jessica is still asking to have lunch in an air plane. BUT, we are not sure how to arrange that in that setting. Probably not possible - as I'm sure the owners do not want strangers eating on their planes. Maybe we'll just have to buy tickets and take a trip.

We found out today that sometimes a special helicopter ride can be arranged with the pilots here at UNMC. I'll have to see if I can find out more.

I took Jessica to get fitted for new shoes today. The unusual gaite and the limping and episodes of leg pain could be attributed to other things. Sinse the tumor has been removed, she has grown a lot, so I figured we should check her shoe size. Turns out she has grown a whole size. Also, from being in bed for so long, the muscles could be weak and she could be unsteady from that. So we have a good fitting pair now that she can tear around in.

AND tearing around she is. We went up to see her friend, Camer, today. Those two made so much uproar that other people were coming out of their rooms to check out the noise. It was rough and rowdy to the max. Then they continued the rodeo in the cafeteria.

They will have a blast tomorrow at the UNMC Halloween Party. Jessica tells us she wants to be a Princess and a ghost and a Mermaide and an Elephant.

Please pray for Camer and his family. Casey is a wonderful mom and Greg a wonder dad. They have recently found out that Camer's cancer is now considered terminal. Any new treatments would be for research purposes only - not any attempt to cure him - meaning they would just use his body to test new meds for dosing limits and side effects. This would mean that the rest of his life would be very painful and lonely and in a hospital. They are chosing to not put him through that. They are chosing to have him as comfortable as possible and as happy as possible and to let him be with his family and to feel their daily love as long as he can.

PEACE BE WITH YOU CAMER

Wednesday, October 27, 2004 10:08 PM CDT

Look at new photos. Enjoy. I'll try to get more photos up more often.

I guess I was wrong about being home soon. We can visit a few hours tomorrow and possibly a night over the weekend, but then we are scheduled for daily scans and assessments to prepare for Radiation Therapy.

She required platelets again today. Still needs them every other day. This may go on for some time as her bone marrow continues to grow.

Very nice to see comments when folks are dropping by our web site. Helps me know I'm not alone.

Jessica laughed so hard today that I thought she was going to fall out of her chair. She is making friends every day. Today she made friends with a six year old who has a great funny bone. He kept her entertained while she was waiting for her platelets. Interesting that his mom's name is Toni also.

Doc presented us with the consent forms for the antibody study that we are interested in. This is a medication that has had some success in training the immune system to attack if any new cancer tries to grow. If we sign up for the study, we are randomized to either receive the immune training or to not receive it. Tim and I will have to decide what to do if we are assigned to not recieve it. The truth is that no one knows if it is really that more affective than the regular retinic acid treatments. The study will give that answer to parents and doctors way down the road. For us, it's really just some extra hope. Which is good that we can have some extra hope.

There is a hospital in New York, Sloan Kettering, that treats patients with their own version of this medication. I think at Sloan Kettering, it is not required that one be in a clinical trial. For the version that they can give for the study, it is only available through the study at this point. I'm not sure if Sloan Kettering would allow it to be administered at UNMC. We are considering going to New York if she is not randomized to the treatment in the study at UNMC. This will put a great deal more distance between all of us. Will add lots of travel. We'll have to pray and decide if all of the factors are best for us. Especially since it's still not a proven thing.

This is avery hard place to be as a parent. The study medication has a whole list of very serious potential side effects. What we have already been through has also had a whole list of very serious potential side effects. It's very exciting to think that this makes so much sense that it's just gotta work. But again, I have to remind myself of how sneaking and lurking this kind of cancer is. There are no guarantees.

Needing lots more prayers.

Tuesday, October 26, 2004 8:19 PM CDT

Look at new photos. Enjoy.

Monday, October 25, 2004 9:52 PM CDT

The world is a small place. Grandma Jeanne was out and about and started talking to a lady. Turned out to be a big surprise when they discovered they shared roots to our home town. Turned out Grandma Jeanne was talking to the wife of a guy that grew up in our home town. Then today I was casually talking to a lady who was in the waiting room at the clinic. She said she was with a friend who was from Western Nebraska. Turns out she lived in the same town as Tim's family for many years and the friend she was hear with is from the area too. When her friend came out - we didn't know each other, but she knew of us, because Uncle Tony was just at their place working on their computer. A few weeks ago we found out that the Chaplain resident knows the neice to the family that live just down the road from Tim's parents and she also knows relative of the family, who live just down the road from my mom and dad.

Jessica's white blood cell count was way low again, so more of the growth factor that stimulates white blood cell production. My cousin asked a good question today. What does the word "Neutropenic" mean. It means that she has low to no white blood cells. Sometimes people can get fever because their whitle blood cell counts are low - and not other cause is found. That is called Neutropenic Fever. It has to be treated aggressively because it usually means the body is trying to fight something and it realizes it doesn't have any white blood cells, so it uses the only defense that it does have - fever. Events can turn very grave very quickly if aggressive treatment isn't started within a few hours - I think the magic number is three hours. Her mouth is getting much better since doc put her on a anti-fungal oral Nystantin. She can't swallow much of it without gagging, but even a little is helping. Still very gaggy. But even with all the things not right yet, she still looks like she is feeling better and better. She even sang "I've Been Working On The RailRoad" for the group of parents and kids in the Lied Resource Center tonight. She is so happy that she has some kids to make friends with.

Sunday, October 24, 2004 11:46 AM CDT

Wow, a whole night sleeping without being woken up by any nurses to take blood pressure or tempurature. We are having quite a sleep over at the Nebraska House.

We were assigned to handi-capped room, so there is no tub. I went to Walgreens last night to pickup her outpatient meds and found a Halloween Candy tub that will work great as a bath tub for Jessica. It's like a big wash tub, but made of orange plastic with black goonie shapes on it. Reminds me of how the pioneers took baths and then hug up the tub on the wall when done.

Jessica did cry out in the night often during her sleep. I'm not sure the cause. She seems quite uncomfortable with her mouth and throat. Not keeping anything down and vomiting up chunks with streaks of blood of digestive tract lining that is still coming off. She needs platelets today and her other counts are on the down slope, so will probably get fluids and possibly red blood cells tomorrow. Her ANC was way down yesterday (290), so she got the white blood cell stimulant (growth factor) yesterday before discharge. That looks better today. She still has nausea often. Having the Oncology Clinic available 24 hours, 7 days a week is quite handy. No rushing this morning. Very nice to have it right at our finger tips.

We remain very watchful. With her being off of antibiotics now and having her ANC low, she is prime candidate for developing a fever. During induction chemo, every time she got a fever, it was usually 1-2 weeks in the hospital since Neutrapenic fevers need to be taken very seriously.

We had to learn a new pump for the TPN (intravenous feeding), but it's working great! This pump is ambulatory, with a special back pack. It works great with her Rock, Roll, and Ride.

When she is not having issues with all the yukiness, she is playing like a regular kid. The Lied Transplant Center has a wonderful playroom and a Healing Garden with a water fall. Also, they have a Disclaveer piano It's like a high-tech player piano. It gets it's commands from a disk player instead of piano rolls. Also, I'm hoping to get her out for a drive today. It's been about 6 weeks since she's been out and about.

Saturday, October 23, 2004 0:43 AM CDT

Thank you to Tim's co-workers who sent Jessica a balloon bouquet.

Thank you to Harrison who sent Jessica a letter that he wrote.

Thank you to all the MOMs who have been sending cards.

Thank you to my Aunts and Uncles who have been Sooooooooooo supportive.

Thank you to my cousins who have sent many wonderful things and wishes our way.

Thank you to all who have sent Anniversary Wishes our way.

The plan is still to go out-patient tomorrow. Grandma Jeanne and I will be doing her medical cares in the Nebraska House econo rooms at UNMC.

It is a strange place to be with this transition. At this point there is no "road map". There are planned clinic appointments and scans, but when they will occure will depend on how she continues to do.

It's also strange because our house does not feel like home anymore to me at times. I haven't had time to do the "home making" things that I enjoy. Planting garden, mowing lawn (lawn has not been mowed since mid-July). Raking the leaves and acorns. Baking bread. Making pickled green tomatoes. I miss my friends so much. I fondley recall when Julie and I tried to make Chinese Eggplant so that it tasted like the one served at a particular restaurant. We tried so many different recipes and ate so much egg plant that I thought we would explode - and did. We never did reach the taste bud eureka on that adventure.

I have to remind myself to try to do normal things and to contemplate normal things for both of our kids. Tim and Ardena are now Brownie Scout members. Tim reports that the other s in the troop are JUST LIKE Ardena. That troop will rule!!!! I wish I could be part of that. I'm hoping at least I can pitch in at times.

Grandma Jeanne and I both revealed that we do not feel we are in the clear with Jessica yet. We both are concerned that there are some rough roads ahead. It feels like we will reach those rough roads soon.

She does continue to feel better and more like herself. She does need to learn to drive her Rock Roll and Ride a bit better, as she is running over the feet of some people that she passes or meets head on. She also is full of the giggles at times and is giving hugs a lot. It feels so good to have her back again.

Tonight she did something that neither Grandma Jeanne nor I have seen before. Her legs were like they were shaky, like the way I saw Grandpa Roy and Tater do when they had weak legs. She said "no", when asked if she hurt anywhere. But she continued to walk like that for some time. I just don't know what to think. Definetly will bring up the episode with the docs.

I have been following another little 's journey with Stage 4 High-Risk Neuroblastoma. She was born about a month before Jessica and was diagnosed 6 months before Jessica was. She is about 6 months ahead of us in treatment. Her name is Sydney Dugan. Her web site is http://www.sydneydungan.com Her Dad is keeping a journal on the web site.

PLEASE pray for her and her family. They have recently found out that Sydney has relapsed. Sydney responded very well to the treatments and scanned clean. But developed leg pain and fevers again. Her doc thought to do an MRI of the foot and leg. The MRI found a place on one of the bones in her leg that looked like something was eating away at the bone - something that only Neuroblastoma does. The feaky thing is that they redid all the other traditional scans, and those scans did not confirm that there was Neuroblastoma in the bone - but her docs opinion is that it is there based on the MRI.

How's that for this sneaky ugly lurking out-to-get our beautiful children horrible monster?

I literally have to remind myself to breath. I have to remind my heart to beat.

Thursday, October 21, 2004 8:33 PM CDT

Jessica wants me to write here that, "I love you." "Do you want to play?" She answers her own question, "Yes."

I have not updated the journal for a while because I've been busy chasing a kid who feels good. She's even back to learning new concepts - learned that in the Winter, it's morning even when it's still dark outside. She is asking why?

Docs will keep us at the hotel at UNMC (Nebraska House) for a few days so that we can access the 24 our Oncology Clinic if needed. We can also access dining room, laundry and the hospital convenience store with out having to drive anywhere. Still she is needing platelet transfusions every other day. Red Blood cell transfusions frequently also. Her intestine infection is not completely resolved, but on the right track. She is also dealing with a fear of food. Her mouth and esophagus were chemo burned pretty bad, so I'm sure that food doesn't taste good and doesn't feel good either.

Docs listened to my request for a whole body MRI. Their response was that the MRI at this point might not see what we need to see because if we see anything, it will not be known if it is new issue or old one. So they would still need to do the other imaging to compare with existing past images. Another thing about this cancer is if they did an MRI and it found nothing, that still does not guarantee that it won't come back. This kind of cancer is sneaky and aggressive. Even kids who have scanned clean, clean, clean have relapses. PLEASE pray for miracles.

ALSO, I found out that I'm not the only one wanting to know if MRI might be a better tool for this cancer. There is a clinical trial coming up that will MRI for the assessments, but that trial is not yet accepting newly diagnosed patients. So it does make me feel better that I wasn't so off base with the request.

I'm not giving up yet with the idea, but I'm not sure a whole body one is needed. Maybe zeroing on on specific areas is more important at this point. Something that I feel quite spooked about is that Jessica did the leg shake and said her leg hurt yesterday when she was dancing to Johnny Cash. This is the same leg shake and saying her leg hurt that she did before she was first diagnosed. I do think that a very close look at that whole leg and possibly hip is in order. PLEASE pray that her doctors agree soon and have it done soon.

Thank you to Cousin Sam for sending such a bright day-before-birthday picture. It wouldn't be Halloween with out a Full Moon! Happy Birthday Sam!!!!

Sunday, October 17, 2004 2:14 PM CDT

News from Tim on Jessica. She is still playing, but is still having episodes where she seems in pain and actually can say where she hurts. Knees, legs, arms, BUT also tummy today. Tim reports that doc is concerned about this pain - exp the tummy pain. Also, I asked the doctor yesterday on the phone if the leg and arm and knee pain can be explained as a side effect of some of the meds. His call on that is that it could not be all explained as that. So, again, things are strange. It's so odd that she can continue to feel more herself, but also show more signs that something is not right. BUT then it could go to reason that the reason she is able to tell us something isn't right is because she is feeling more like herself.

So now tomorrow I'm going to have to risk looking like a crazy mom again and I'm going to advocate for a total body MRI. This usually isn't done. BUT --- in the last few days I've learned of so many relapses and I'm reminded that Jessica has very slim odds of making it in the first place, so every shred of everything that might help her should be done. I want an image that will find every tiny spec of problem that might exist. If they won't do an MRI tomorrow I at least want one before Radiation Therapy so that the Radiation can be targeted every where it is needed. Tomorrow, they may need a quicker image to help diagnose what is going on with the tummy pain. So, I'll go along with a CT for the sake of getting that tummy looked at.

The cancers that these beautiful children get are different monsters than other cancers. With other cancers, a lot of environemental exposure and smoking and drinking and other kinds of things can be linked to why a person gets the cancer. With these beautiful children, it's like the reason they get it is deeper and scarier. They didn't eat or drink or smoke anything that caused it. No one knows what caused it, so no one knows how to stop it from coming back. It's like this silent unknown lurking monster that is just waiting to have a chance at them again. That is why I think that every shred of everything that can be done must be done.

I tell Tim that I'm feeling scared of the response I will get when I ask for a total body MRI. His response was that he has never seen me back down before, so why start now, if I truely believe that it is what is needed to make sure she gets the best shot at making it, then go for it.

I love you Tim. Thank you for pointing out that risking looking like a fool for one's believes and concerns is actually a sign of strength.

Last night I was thinking a lot about Tim's Uncle Bill. At his funeral his children told of how, Bill would go to the barn alone at night and get on his knees and cry and pray. When I met Bill I was struck by what a normal loving man he was, but his faith was very strong and deep. I contemplated a lot over how a person must have been brought up or what experiences they must have had to have a faith like that. Of course I now think that it's not how a person is brought up or what they have experienced, it's the wisdom of knowing that our life depends on God -- all parts of our life -- happy and sad -- that's what will help a person have a faith so strong and deep. And then when Ardena and I went to church this morning, On Eagle's Wings was our first hymn. (For those of you who were at church, this will clue you in to our arrival time). So for all of you who knew Uncle Bill, you'll understand why I felt that he was there speaking to me in church this morning.

Soo, this all ties in with the story of Our Lady of Guadalupe. Juan Diego had a vision of Mary that told him God wanted a church built at a certain location. But when Juan told the Bishop, the Bishop didn't believe him. So, Juan asked God for a sign. In the winter, God led Juan to find fresh roses. Juan put the roses in his coat to protect them from the cold and he took them to show the Bishop. When he opened his coat, the image of Our Lady of Guadalupe was on his coat.

I think often about how silly a person must be willing to appear when they are talking about and living their faith. And, I guess I need to confess that I often giggle when others are looking silly to me.

For All Saints Day, the kids get to dress up, but also have to give a presentation about the person or story that their costume represents. So, I made up a little diddy for Ardena to sing at school for her presentation about Our Lady of Guadalupe.

It is true. Yes it's true. Juan Diego isn't loopy.
It is true. Yes really true. Juan Deigo saw Our Lady of Guadalupe.

These words go good with a tune similar to a Mexican band. Ardena is singing this over and over already. It's one of those tunes that gets stuck in your brain.

Saturday, October 16, 2004 10:46 PM CDT

I'm still home with Ardena. We really got a lot done on the Our Lady of Guadalupe costume. She came up with some really great interpretive ideas that help tell the story.

So, Ardena came up with the idea of having a crown of roses and the dress having roses on it. It was just so neat. We got to Hobby Lobby and found the exact color of fleece that we needed and the exact fabric with roses on it to make the dress. And of course, the wedding isle is great for the crown of roses.

Getting stars on the cape is another story. I thought maybe puff paint. Idea seemed great to Ardena too. So we jumped right in when we got home, getting puff paint all over us too and on the other things that we didn't want puff paint on. THEN I read the instructions. So, after this dries for 24 hours I'm supposed to wave a hot iron over to get the paint to puff. It looked to us like it had already puffed. So we must really have a thick dose of puff paint on our hands. It will be interesting to see what it looks like when it actually puffs. I'm thinking it might look like we glued popcorn on the cape.

In case you were wondering, not all my errors are words that I forget to type. This web site must have a program that erases what it thinks to be dirty words. Sometimes I can get the word to stay if I put it in quotes. I can understand why it erased the first word in "cocktails", having any reference to male poultry is just naughty, BUT I don't get it that it kept trying to erase the first word in "thumbs up sign".

News from Tim on Jessica is that she is playing and having a good time. Her counts did drop enough that the doc restarted the growth hormone that stimulates white blood cell production. They are still not sure what is going on with her complaints of leg, knee, and arm pain.

After we are release from the stem cell bone marrow transplant, the challenge will be what to do about three weeks of radiation. Driving up to Omaha every day is going to be exhausting. We did that with the two weeks of assessments that were needed before transplant and it just about made me get so worn down that I felt sick. I think Grandma Jeanne did too. We did have some great road trips and found that Short Stop Pop Stop in Mead that Jessica liked so much. Staying in Omaha in a hotel room just doesn't seem good for a kid. I'm also concerned that staying at the Rainbow House might not be such a good idea, but maybe it would be o.k. We have to be protected from crowds or even just one other person that might be sick. We can't be around certain kinds of pets. Don't want her to play with toys where a sick kid may have played with it. I'm thinking of renting a furnished apartment for a month that is close to the hospital. Or maybe, hotel for a few days and home a few days. Hard to decide. I'll check into what might be available next week. But I'm also wondering if there might be a place in Lincoln that could do the daily radiation. THAT would be the most ideal as far as convienience, but I don't know if her doctor will know the services here enough to decide if they could perform the therapy the way she will need it. Also, I can imagine that the doctor will want to assess her every day to monitor how the radiation is affecting her. They won't be able to do that if we get it done in Lincoln, unless they also find us a pediatric oncologist that is here all the time.

Friday, October 15, 2004 10:05 PM CDT

Jessica asked both Aunt Betty and I to leave the room today. She tells us to go get something to eat so she can have someone sit with her. She really likes making friends. I think also, she must get tired of hearing our adult babble when she would like to fully focus on the movie she is watching or fully be a kid doing kid things, only talking about kid things.

I feel like I've been being the weird mom. But I have to trust my instincts and put the breaks on when I feel I need to. Again I refused something ordered because it didn't make sense to me, with my limited knowledged, and really need more information to feel comfortable with what is being ordered. I keep wondering if my million question mothering wears some docs out. If I didn't ask a million questions I would feel like I was not doing my job.

My concern was about the oral contrast that was ordered for the CT. She is still vomiting and I thought that the contrast would be like a food and stress the bowel, possibly get stuck or perforate the bowel because she can't drink enough to help it pass. The doc thought that the one Friday at midnight was done with oral contrast - so that's how he ordered this one. And come to find out, the nurse might have thought it was a huge amount of contrast to be given, because that is what they usually give the adults on the unit. BUT, I called radiology and found out that in Jessica's case, they would give a different kind of contrast that would not get stuck and that is a small amount. But still, she remained so nauseated that I'm not sure she would have gotten enough contrast to he a very helpful image. So, no CT done yet.

Actually, even if my reason for putting on the breaks might have been off base, it seems that holding off was actually a good thing because the Infectious Disease Docs were recommending to keep her on the full course of antibiotics anyway, so the CT was not needed to determine when to take her off. So the doc did not have a problem with not doing a CT.

Now it is still a bit confusing as to when the CT is needed. I'd like one done when she can get a good amount of contrast down so that the best possible image is available. My main concern at this point is that the bowel needs to be in excellent shape before going through the three weeks of radiation that is coming up. I also do have concern that a CT might be needed to prove resolution of the infection before starting her on any foods. BUT, she looks like she feels really, really, good. Also, Infectious Disease docs are saying that there are other clinical indicators to tell when she would be ready to start some foods.

She is having some periods where she cries out and squirms or holds still. She'll point to her leg when we ask where it hurts. I'm wondering if this is joint pain that might be a side effect from the growth faction (white cell stimuator) that she has been on. Her counts dropped lower than expected, but doc theorizes that this is due to the cells localizing to repair mucusitis and infections. So the thought is that she is producing good, but that what is being produced is being used up before we can get a count on it. If her counts drop below 500, this doc plans to restart the growth factor for a while.

Her eyes are getting better. No bruises around the orbits and the whites of the eyes are clearing up. She is also starting to move and wiggle with the music on t.v. She has a new medical student assigned to follow her case. This time it's Dr. Erica. AND she can have beauty parties. She misses Dr. Jason, but when the idea of painting finger nails came up, he put his foot down quite clearly.

The National Guard called today. I though I new why they were calling. They have this Young Hero Award/Medal that they present to all Make A Wish kids. BUT then he started talking about chemistry classes and making sure they will transfer for credit to the PA program. SOOO, wrong number. But it was a great reminder that I had forgotten to mail the form that I needed to send in to consent to them presenting Jessica with the Young Hero Award. God knocks on our door in interesting ways.

It is very strange to think of being discharged. I feel "hospitalized" - like I've been initiated or hazed into a club. BUT, at the same time I really want to be home again. Going through something like this really changes a person. Seeing Jessica go through this stem cell bone marrow transplant is the hardest thing I have ever witnessed. I'd compare it to being with a burn victim during the treatments. Jessica truely is a hero.

I'm also wondering when I will be able to have just a regular conversation with my old friends. I wonder how they put up with my conversation topics. Debridment of the mouth, frothy blood, fungal diaper rash, counts,... Please give me a sewing project or a salsa making party that I can talk about!

But, then I think that THIS is what has come our way to deal with. I can turn this situation into a gift or talent of some sort. That's a lot better than running scared or breaking down.

Please include Jessica's friends and their parents in your prayers. We have met so many brave young heros here. Several of her new friends have relapsed several times. Some have been told that there is nothing more that can be done. Some have tumors that are not responding and that are using up the red blood cells and platelets so fast that the body has none to use. Indeed, as one mom put it, "Cancer is Ugly".

I am home now with Ardena. Our task tomorrow is to start getting stuff together for her All Saints Day costume at school. She wants to be Our Lady of Guadelupe (SP?). Technically, she is not a Saint, but the man who had visions of her is - Juan Diego. I want to include her as much as possible in this project, so we will be using lots of puff paint for the stars on her cape and will use fabric glue as much a possible.

We had a wonderful movie night tonight with Erin, Barry, Sydney, and Logan. These wonderful neighbors of our really know their wine and popcorn.

Tim is with Jessica and Aunt Betty. Hope that they can both keep up with her. As she continues to get better she will be running the halls.

I suppose that running in the halls would be a good clinical indicator of when she would be ready to try some foods. Wonder if that is listed in the medical books as an official clinical indicator. Go Jessica!!

Wednesday, October 13, 2004 3:09 PM CDT

Aunt Betty is here! Jessica is soooooo glad. She kicked me out of the room so she could be with Aunt Betty. Actually she kicks me out of the room also at other times because she wants to make friends with different staff people and students.

Most people would think that a mom's feelings would really be hurt by having a child want them to leave. My take on it is that she feels safe and trusts that I will come back. I don't like being around the same person all the time either.

Doc decided to not have her take Colace. He thought that the reports were that she was straining. Colace will help with that. What we were reporting is a period of crampy pain before expelling mucusy-liquid stool. So, it's not needed at this time.

Plans are to take her off of the white cell stimulant, do another CT Scan to check how her intestines look, then if o.k., taker her off of antibiotics.

This concerns me. Mainly because I'm concerned that with taking her off of white cell stimulant, her "count" will drop then have to come up on her own. I'd feel better leaving her on antibiotics until her "counts" come up OR easing her off of the white cell stimulant vs. abruptly stopping it (but I have never heard of anyone doing that). Feels scary taking her off both at nearly the same time. BUT, I do admit that she looks like she is improving every day. AND, she does meet the published criteria for deciding to discontinue treatment for the Neutropenic Enterocolitis - as long as the CT Scan shows evidence of resolution. AND as long as the criteria of "72-96 hours before alterations" means that after 96 hours, discontinueing is an acceptable alteration. I have to trust that Jessica will let us know or show signs of not feeling well.

The Wish Guys from Nebraska Make A Wish came to visit Jessica yesterday. They brought her lots of goodies and the video from their "Share The Magic" campaigne. She has just loved watching the video of the 10/11 news segment on her wish. Wants to watch it over and over and over. It's great to see her so happy and to be able to relive the joy she felt on that day.

Tuesday, October 12, 2004 9:55 AM CDT

Another one of those moments that will be etched in my mind forever: Taking Ardena to get her flu shot.

The hospital here is recommending that all family members and friends who will have daily contact with a person with cancer get the flu shot. Of course, if a person has other high risk reasons, then they should get the shot too.

Ardena was protesting, but I told her it would be o.k., that when they gave the shot to me, it really didn't hurt as much as I thought it was going to. Her response to that was, "But that's because you know how to handle it better than I do." Of course I went ahead and got her signed in for it. When the nurse called her name she started screaming at the top of her lungs, ran from the room, out into the hall of the Lied Transplant Center and kept running and screaming. She ran into a corner and tried to double back and that is when I had my chance to get close enough to grab her. She is much taller than the last time I had to carry her kicking and screaming. It's also been a long time since I had to chase her down at top speed. If she hadn't been cornered, I do not think I would have caught her. I'm sure we were quite the sight. After it was done, she did act like it wasn't as big a deal as she thought it was going to be, but she wouldn't admit that.

Tim really suprised us all by showing up at the hospital yesterday. It was so great to see all eyes light up. Then we sang "Happy Anniversary". Then, while Tim and Jessica took a nap, Ardena and I played a board game and ddrank a pop. She was the winner. I didn't let her win this game, but we do need to work on dealing with the loss in a better way. Tim and Ardena play cards and it's always a scene if she doesn't win.

It's still a strange time for Jessica. She continues to look like she is feeling better and getting back to feeling like herself. Even giving kisses again. Also, the facial puffiness is going down. However, continues to vomit and have liquid stools. It's hard to know if it is a result of the chemo and bone marrow engraftment or if it's because of the intestines still having enterocolitis. Also, a doc who we haven't had before is covering rounds this week. He wanted her to be on Colase. I'm having a hard time understanding why - so I've asked for more information to help me agree to let her have it. It just feels counterintuitive to me to put her on a stool softener when she is having liquid stools and when she is not eating anything and when she has problems with her intestines.

I just love it when Jessica expresses her ideas and tells stories. Yesterday, she told Tim that she wishes her blanket had a face. Tim asked her why and she responded, "Because I love it."

Sunday, October 10, 2004 6:05 PM CDT

Jessica continues to improve. Docs continue to be on alert. Docs are still making a few tweeks to her antibiotic, antifungal, antiviral, I.V. fluids and nutrition tail - but all seem to be breathing easier. We are still transfusing her with blood products to keep her in the best shape possible incase she needs surgery and to help her heal better.

What the docs had found was similar to what she had when she was first born. It's very serious and has a high mortality rate. I think that what really is on Jessica side with this is that it was caught and treatment was started before it started to have tissue death in the intestine wall. When that happens, the wall of the intestine can rip/perforate/explode and cause death.

Yesterday she was asking for a wagon ride, but doc did not allow until he is sure she continues to improve. I suggested that we get her a scoot toy so that she can get more exercise that a wagon ride would give. Jessica gave me the "thumbs up" sign. Our neighbor Brad helped her learn how to do the the "thumbs up" sign when he gave us all rides on a cool Harley with a side car.

So I went shopping for a scoot toy, but the store close to hear didn't have one I thought would be a good fit. She has grown a lot since the tumor was removed. But I did come back with a princess tent and a "My First Leap Pad" and a Dora book to go with it. She was pretty excited when I came back. Wasn't too upset that I didn't have a scoot toy.

Jessica actually hugged me when I came to the room this morning. This is something that has not happened for some time now. It was not "the melt" - I think because she still does not feel 100but it was a great giggly hug.

Today I went out and searched for a scoot toy that I thought would be more useful for her play/exercise needs. I found a delux rock, ride, and roll. I think it's Fisher-Price. It has some noise makers and flashing lights on it too. I figured when she had to stay in her room she could use the rocking horse mode. When she wasn't feeling strong enough she could use the ride mode (parent can push/guide it with a handle), and then there is a role mode like a trike. I might have the mode names mixed up, put it gets my point across. The seat adjusts enough that she could use it as a scoot toy if she does not want to use the pedals. She fell asleep while Tim and I were doing the assembly so, I hope that when I get done posting this update, I'll find them driving around in the halls.

It sure feels good to be in a Mommy Barometer state where I feel it's safe to go pick out toys.

I keep thinking of what a wonderful and remarkable job that nurse did of getting our concerns and observations heard and that she kept alerting and updating the docs to our concerns. Not only our concerns, but hers also. It would have been easy for the nurse to dismiss Jessica's symptoms to the flue like state that patients often feel during stem cell bone marrow transplant. Actually that would have been a reasonable assumption. But this nurse suspected that it was not just aches and pains and this nurse also was alert to the changes for the worse and was alert to how significant these observations are. It would have been so easy for her to worry about disturbing or pestering the docs in the middle of the night. It would have been so easy for her to think that it could have waited until morning. The doctor on call actually thanked us and the nurse for keeping him updated about our continued concerns. I think that also this says a lot about the doctor. He didn't dismiss the nurse's reports. Some docs would have just yelled at the nurse and told them to call back in the morning if it continued. I feel this is a good example of the team work that is required to get the best medical care.

Tomorrow is our anniversary. I really enjoy telling the story of how Tim and I met and of our wedding day. Would be nice to find a Polka Mass somewhere. I'm so thankful of our family. I am so glad that Tim is my husband. Also, I really hit the jackpot with the inlaws that I gained. We sure miss cousin Sam. I wonder if he is wearing the work boots that Ardena wore. My cousing Kim gave them to us and they went perfect with "Little House on the Prairie" type outfits.

Speaking of that, if you read "Old Jules" - Tim's family is referred to in that book. They are the Peters kids who picked on Old Jules.

Saturday, October 9, 2004 2:32 PM CDT

Today we have a better picture of what IS going on with Jessica.

The UNMC Nurse that was with Jessica and Tim last night when Grandma Jeanne and I took Ardena back to Lincoln did an excellent job of advocating for Jessica and communicating our deep concerns that something very serious was developing. I had called her when we were just getting to Lincoln and told her that I felt very spooked by the developements and that I knew she was going to talk to the docs, but that I was hoping that she would communicate that my level of concern was very high, to the point that I feel that I need to insist that they look further. I felt last night that I should just come back to Omaha, but I was afraid I would fall asleep at the wheel.

Tim called me this morning shortly after 6 A.M. and said that the doctors wanted to meet with both of us to discuss what was found in the night.

Docs did listen and respond to the nurse's job of advocating for Jessica and did a CT at mid night. And did a surgery consult at 3 A.M. At this point the docs remain on alert and are keeping her blood levels supported with platelets, red blood cells, and white blood cell stimulant. This is being done so that she can be in good shape in the event that surgery is needed.

Docs think that Jessica has one of two possibilities that are showing up on CT. Pseudomembranous colitis or Neutropenic colitis. Both are known complications of use of high dose/long term antibiotics and high dose chemotherapy. Docs made some changes in her antibiotics and are hoping that this will result in improvement. She has these areas in both her small and large intestine. I do not know how large of an area or how much of the bowel is affected. There does not appear to be any tissue death at this time. The Pseudomembranous colitis will usually respond quickly to a certain antibiotic because what happens is a certain organism takes over and causes the probelms. So the choice is to get rid of that organism. But, with Jessica, there is no support that that specific organisma is present, so the docs are thinking it is more likely the Neutropenic Colitis. This might respond to some antibiotics, but the treatment is usually supportive with the plan to do surgery if things get worse.

And still, things are strange for Jessica. Because today she seems to feel better. Does not guard her stomach or stiffen as much as yesterday. Frequency of liquid stool is decreased and frequency of vomit has decreased. Seems to be breathing with more ease. Played ball with me for a while. Is making comments and observations that are more in line with her usual intelect.

It feels good to feel that she is doing better and feeling better, but I don't think it's safe to assume it's all just resolving with the changes that were made. Docs remain on alert and watchful and ready to respond. I do sense a level of confidence in them that tells me they feel ready and able to deal with the situation. I feel that they have all "studied up" on her situation and will not have to take time to wonder what to do if something needs to be done.

Please contintue to pray for Jessica and her many wonderful doctors and nurses. I need some prayers for strength. I feel like I could just start crying and not stop. Please pray that she will heal from this very serious situation.

Friday, October 8, 2004 11:40 PM CDT

It's a strange time for Jessica. She is still showing signs that she is getting back to herself - she did take a walk today and did enjoy some race cars and showing some pictures to her favorite medical student. She actually made plans with him to go on a walk. BUT, there seems to be something that is just not right. The CT of abdoment picked up something - some extra fluid. But docs do not know exactly what this means in terms of affecting Jessica. It's like a sign something is not right, but what is wrong is still not clear.

And today she made some turns for the worse in terms of her general sense of wellbeing. She looks like she is in pain and she says owe, but she shakes her head when asked if it hurts somewhere.

She guards and stiffens when picked up or tries to hug. She cannot do "the melt" that she used to do when she hugged. It think parents know what "the melt" is - hugging like she feels like she just melted into you. That kind of hug. I miss that so much. AND she really tries to hug, but seems like she just can't.

Today she started vomiting lots of bile. And she is having frequent liquid stools. She is having nose bleeds and her eyes have black and blue around them and the whites of her eyes are still blood red.

CT did find sinus infection and ENT did cultures, but results are not back yet. Docs wanting to make sure if there is an organism in her sinus, that the current cocktail of antibiotics, anitfungal, antiviral will address that particular organism.

Her nurse tonight is asking that an X-Ray of the abdomen be done because the nurses sense is that there is something else going on - especially since the onset of vomiting and liquid stool episodes and the appearance that she just does not feel good.

My Mommy Barometer is going whackey. I really feel that something is starting to brew that is really serious. I do respect though that it has to show itself before anyone could know what to do about it. PLEASE PRAY that whatever it is makes itself known very soon and please pray that the medical staff can figure out what test or scan or image is needed to find it and PLEASE pray that we can successfully address it.

We did get an eye opener of what I consider to be a weak link at UNMC - their lab - or at least some people in the lab. Seems that there is a technician or some lab worker there who thinks they can just discontinue orders on their own because they might think the doctor who ordered the test doesn't know what they are doing. Who knows why they think they can just cancel or discontinue an order for a test - maybe they just don't want to take the time. So how that affected Jessica is that the cultures that the ENT wanted done were not done when the sample was optimal. A delay in processing the culture means that some of the potential organisms have died on their own and won't be able to be cultured. BUT, the ENT does feel that there still can be some very useful information gleened from culturing the swabs anyway - several hours later - and feels that what might be missed from a more adequate sample is a remote possibility. This is a proceedure that one doesn't want to redo often - especially on a kid who has platelet issues. So, for Jessica - hopefully and most likely it seems the impact of this persons decision will be minimal-----BUT I wonder what other kinds of tests they might be cancelling AND what if that resulted in missing something really big. I am assured that internal complaints are being filed and that the issue is being taken up by several of her care providers who are very concerned that their orders were not carried out when they should have been carried out.

Tim is at the hospital with Jessica tonight. Grandma Jeanne and I have Ardena in Lincoln. Tomorrow we will do some catch up cleaning then I will go back to Omaha and Grandma Jeanne and Ardena will spend the rest of the weekend and Monday with Aunt Carol and Emily.

Grandma Jeanne really loves her grandchildren and children. I know it may sound odd that I would have to point that out - but not everybody has this kind of love in their family. Mom met a mother today who was crying because one of her four children would require two months or more hospitalization and when she called to ask her mom to come help, her mom refused - didn't even want to come for a couple of days. Also I see some kids and have asked why I haven't seen any adults in the room with them other than the staff. There are kids in the hospital whose parents hardley ever come to visit. I mean - little kids who are left there. I know there many situations where maybe the parent just cannot for various reasons - but sometimes it's just because the parent can't handle it. At a hospital in Lincoln and little baby was abandoned because he was born without the asophagus attached. He was waiting to find someone to adopt him. Anyway - my point is that I am in awe of the love that Grandma Jeanne has for us all and am in awe of the committment and help that she has been. Mom has been here since February and frankley, I do not think I could have done this without her. And Grandpa Bruce has encouraged Mom to be here - he wouldn't have it any other way.

Wednesday, October 6, 2004 7:52 PM CDT

Docs took her off of the high powered anti-fungal and her fever went up again. So, they have put her back on it. They figure treating her potasium level is easier that having a fugus run amuck. Still, she has fevers - but not as high. So are doing CT and Ultra Sound and Cultures to see if the source can be found. The "Sleeping Beauty" technique still worked, so she did the scans without sedation again. That's one less worry about stress to her system.

Other than that, she does seem to be making progress. Even singing in her sleep and playing a little today and giggling because the nurse said she had stool in her diapers. She thinks that the word "stool" only means like a step stool. Her mouth is healing more and more every day. Still getting frequent transfusions of red blood cells and platelets. AND she is listening to Johnny Cash music again. She is enjoying the mail she is getting - THANK YOU ALL.

Sunday, October 3, 2004 7:57 PM CDT

Tim and I switched places for a day or two. Ardena and I have been having fun. Shopping, getting hair done, digging through the clothes, and going out for dinner.

It was quite strange to have her awake before me. She even fixed her own breakfast because I was still in bed. Cool Whip, pudding, SunnyD. The only part she ate was the Cool Whip. Then she went to see what Logan and Sydney were doing. Erin and Barry must have noticed that we looked like we needed a healthy breakfast because they cooked us eggs, sausage, and toast for us.

Then she went with her Uncle Brian and Seynen and Caylen to a movie. Shark Tales. Brian said it is o.k., but no NEMO.

We wrote a big TO DO list to follow. I still can't find her purple winter coat. I keep wondering if she left it somewhere last year and I just didn't realize it.

We also got to watch Ella for a while. That was really neat because I think it's the first time we ever did that. AND, Ella gave me a big hug when she left. Julie says that's the first she's ever done that.

Tim reports that docs suspect that the high power anti-fungal might be the cause that some of her blood work is off. So, as soon as she is making more white blood cells, they will be able to take her off of that anti-fungal and things should go back to normal. AND, Tim reports that he thinks Jessica is starting to feel better as he sees more life in her eyes, not just a blank stare, and she even smiled a little. AND she accepted Aunt Carol's offer to help her put a dress on so she could walk Tim out when he had to leave. So she wanted to take a walk after that. It's 11 days after transplant. In two more days we should expect it to only keep getting better.

I also found out from the Pediatric Oncology PA that we don't have to be so concerned about a small fish tank in the house - especially since it is not something that we let her take care of or be around. It is up high enough that she cannot get to it. Normal house stuff is o.k. It's just that we cannot have house plants or pets who need bedding in cages and need to avoid places that have animal bedding or high moisture like the aquarium at the zoo. Also, we don't have a moisture problem in the basement and we keep the humidity controlled well, so it should be just fine. We will have lots to learn.

Friday, October 1, 2004 10:13 PM CDT

Nothing much new today. Things are slowly getting better. Emphasize SLOWLY. She still does not feel too good. She just told Grandma Jeanne to leave the room. Evidently she wants the nurse to be in the room with her.

My concern is that she just lays there. Lays there and is awake watching t.v. or lays there and sleeps. She has no interest in drawing or coloring or painting finger nails or getting up or listening to her usually favorite music. Four days after surgery to remove the tumor, she was running in the halls. But now she just lays there. She does answer yes or no to some questions and expresses resistance and dislikes quite well. I hope she will be back to old herself soon.

Thursday, September 30, 2004 7:08 PM CDT

We have some white blood cells showing up on labs! This is a major accomplishment! They are barely detectible, but THEY ARE DETECTIBLE. Her ANC is a whopping 0.7. Normal is anything above 1,500.00 SO, we have a ways to go. But even with that barely detectible, I think we are seeing improvement. Her mouth today is not having the frothy blood coming out and we are seeing nice new pink tongue. Her eyes still look a bit wild with the blood in them, but she got another transfusion of platelets today, so I'm hoping the eyes will resolve soon. Some problems with blood gasses found, but are retesting before making any conclusions.

Aunt Carol came to see Jessica today. Jessica is not her usually loving self right now, so it's hard. But she did give Aunt Carol a big hug. Carol said it felt more like she was hanging on for dear life. I do think she is feeling more pain, so another increase in morphine may be in order. When Uncle Brian was here, Jessica insisted that he be the one to change her diaper.

We are having discussions about these darned side effects. The side effects are just as deadly, if not more deadly than the treatment. One gal Carol knows of made it through stem cell transplant and then felt so good that she showed sheep in a fair and ended up getting a fungal infection that killed her. That is why Jessica cannot dig in the dirt now. Also why we cannot have any house plants or fresh fruits/veg in house without washing. Actually they should be all cooked for Jessica. Also no cut flowers. It would be best if we got rid of the fish tank for a while. So we will have a check list of what to do to make the home safer for Jessica. Ultra clean dehumidifyers and condensate pump, No vaporizers, I even wonder about Parmesean Cheese. That always smells like fungus to me. And we won't be going to see the goats at the zoo for a while. I suppose we can treat the walls/floors of the basement with an anti-fungal spray.

Most people do not realize the truely amazing and miraculous job that our bodies do every moment in attacking things that could kill us. So, next time you have a cold, just be thankful that you had the white blood cells that knew how to attack all the yeasts and fungus that is blowing in the air all the time.

Mom and I are having a great time watching Everybody Loves Raymond. Jessica tells us that it is not funny, but it is so funny that we get stitches. One episode was when Debrah was taking exercise classes and it helped her libido go up. So Ray was upset at her by cheating on him by having more with him. She responded with something like, "I'm really tired, so could you just call yourself stupid?".

Wednesday, September 29, 2004 11:31 PM CDT

We are at day 8 after transplant. She is still getting worse with the side effects, but docs feel she is still on track with the transplant.

The strong anti-fungal was started, knowing that it could cause even more severe side effects. Fever, chills, shakes, pain, kidney damage -- But so far it just seems to be helping her, as she has not had fevers since starting it. Does feel good to feel that the doctors really made a good call in starting it. Docs explained that one really does not want to waite until a fungus has set it, because it is extremely hard to treat. So, the protocol here is to start high powered anti-fungal after 5 days of fever and antibiotics.

She is showing evidence of problem with liver, but it does not seems to be the very serious Veinous Occlusive Disease that can come along with chemo and intraveinous feeding. So all are fairly relieved about that. Docs expect it to resolve.

Docs added more Morphine to help keep the pain managable. Her mouth continues to get worse and more painful. I'm sure I've explained what she is going through, but still, to see her like that and to know she hurts is so hard.

I do feel that she is experiencing a considerable sense of dispair and helplessness over being in so much pain and having to endure mouth cares that hurt even more four times a day. For a child it must be so hard to understand why the people that love her and are caring for her have to hurt her.

I do really need to get out for a long walk tomorrow morning. It's been days since I've been outside and the last time I walked up to a window, my eyes hurt from the sun. Another little that I know of that has this same cancer was in the hospital for 4 weeks for her transplant. But, she got unpurged cells, so they tend to engraft and start producing bone marrow that functions a bit sooner. I hope Jessica's stay is not much longer. It would be really nice if the roof of the hospital was like a deck of a cruze ship - running/walking track, swimming pool, wet bar/snack bar -- now my ideas are getting a little wacky. Time to get some sleep.

Monday, September 27, 2004 11:41 PM CDT

Grandma Jeanne was up all night with Jessica, as she is requiring lots of assistance when she vomits. We have to help her get it away from her mouth quickly or she might suck it back in. The mucus is very thick and hard for her to clear from her throat and mouth. The entire inside of her mouth is oozing and the skin in the mouth and on the toungue is starting to blister up and coming off in chunks. I though she might get past all of this without that happening, but tonight the nurse got a good look and could see that it is starting to happen. Jessica is so brave. Mouth care is very painful, but needs to be done. She gets more upset about having her arms held than she does about enduring the pain. She is truely courageous.

Her fever was controlled for a great deal of the day and she slept comfortably all most all day. After getting the growth factor infused, she spiked a temp, but it has dipped again.

Infection Disease Doctors were consulted today because of her continued fevers. They are trying to avoid using the big gun antibiotics since nothing is cultering out of her . They are going to change antibiotics and will add in a stronger anti-fungal. When a person has no white cells, they cannot fight fungus well.

Both Grandma Jeanne and I seems to experiencing a disconnect with time and day and sometimes location. Keeping up with the assistance that Jessica requires and living in a hospital day in and day out can really alter one's sense of reality. We don't watch much news because it's Disney 24/7 or some cartoon or Pixar movie for Jessica.

We watched Nemo again so she remembered that fish do lay eggs.

I was going to try to go to Lincoln tonight and hem Arden's school uniforms and vacuum, but Tim said they were doing fine for now and just wanted me to keep up on my needed rest.

Seems staying put was needed, as Jessica needs her blankie washed again. I did get my concerns and ideas about more laundry facilities to someone today, but they are thinking that someone else needs to hear what I have to say, but they need to do some checking as to who it should be.

Monday, September 27, 2004 1:11 AM CDT

Tim came to UNMC yesterday and went home today. It was so nice to have a date together. That was only the second time since February that Tim and I got to make eyes at each other.

I'm so thankful that Grandma Jeanne can be here with Jessica and that Jessica finds so much comfort in Grandma that we can leave the room and she is quite happy that Grandma is there.

When we got back from our date, Jessica was needing a lot of assistance, as she was in a great deal of pain, high fever, and is still having trouble with the mucus in her digestive system.

She had not been able to keeping anything down, and the only way she can have acetamenaphine delivered is oral. It seems that something very liquid triggers a gag/vomit. Or it could be that the formula of acetamenaphine she was getting had alcohol in it that caused it to sting or it could be that the flavoring made it sting-pain gasp cough gag vomit.

She cannot have other fever controling medicines becuase they also interfere with platelet function and also cause disruption in the enzymes that help protect the stomach lining or can cause damage to other organs. With her platlets so low and with her digestive system already in a state of damage and her other organs already stressed from the chemo, it is just not smart to introduce more damage. So there has been nothing to control her fever.

The concern is not of medical NEED, but only of her comfort. She refuses the idea of a cold wash cloth to help with comfort. Who knows why, but she is very strong willed. My efforts of resistance reduction have not been very effective lately. I think that a person has to feel good to be willing to try new things, so resistance reduction just isn't going to work as well. Also, even old things that used to be fun to her have lost their appeal. (Don't. Singing makes me nervous.")

BUT, with some brainstorming we came up with an idea. I remembered when I was in the hospital with to bad reaction to the pressure med, that my back hurt so bad and they had me lay on a mat with circulating warm water. I thought, what if we put cold water in it? AND, with nurses and doctors here very willing to try anything to support parent's wishes and parent involvement with the medical care and decisions for their child - we got a cooling/heating system where Jessica lays down on a mat-blanket-kind-of-thing that has water circulating and controling the temperature. She doesn't even know it is there. It did take her temp down a couple of degrees and did have her more comfortable for a while. When she is cooler, her heart does not beat so fast and she does not breath so fast. Her heart rate and respirations are extremely high to the point where it's not good.

ALSO, because the nurses and doctors here basically bend over backward to fill parent wishes and to try to problem solve - we gave her BRAND NAME Tylenol Concentrated (thick liquid) Infant Drops in Grape Flavor (Alcohol Free). And the nurses put it in the freezer before given. Also, we have it after oral cares were done so she had a chance to get sick and clear her throat out before getting medicine. FINALLY she kept some down!

When I say they bend over backward here - seems that they actually sent someone out to buy some brand name off the shelf - just to please MOM's attempts at problem solving. It just feels so good to have my ideas treated by the medical staff as valid and important and important enough to actually act on them.

I was so afraid they would say, that's never worked we wont' waste our time or we do not have that in our formulary so you just have to use what we have, it would take too much red tape to get that done or if the doctor thought that would help they would have ordered it alerady or some other dismissive response that is typical in a huge organization or in a place where the nurses want patients to act like patients and doctors to act like doctors and do not like patients or parents acting like doctors or nurses. Plus, I think that others can view me as quite a pain in the waputi, so if I am being viewed that way here, at least no one is letting on about it.

I feel quite empowered right now. It will be interesting to see if I can get better patient laundry facilities available. Right now there is only one washer and one dryer that is coin opp. AND, it is not located on any of the hospital floors, but at the on-site "hotel" rooms. AND some of the "hotel" desk staff do not want the laundry coin opp used by anyone not staying in the "hotel". Hmm, definitly a specific issue that could be improved on.

Jessica required more transfusions of red cells today and more platelets. Since her bone marrow has not grown back yet, she cannot produce any of these herself yet. Please donate if you can. There are some families here that have had to waite a day to get their child the that it needed because the local bank did not have any of their type.

Thank you to all that have posted in the guest book. It really helps me feel that we are not alone.

Toni

Friday, September 24, 2004 6:27 PM CDT

Well, when I got back to the room, the oxygen had not been started. Docs decided to monitor some more before taking that step. Decided to try exray and found fluid around the lungs. Gave her Rx to help her get rid of excess fluid to try to help her breath better. But docs are saying that the condition of her digestive track is severe and may require ventilator to protect the airway from the mucus that is coming out of the digestive track.

Still she is a trooper. Is brave. Does her mouth cares even though it is painful.

I tried singing her some songs from a hymnal and some Johnny Cash, but she told me to quit "Don't. Singing makes me nervous." she said. Where did she come up with that?

Thursday, September 23, 2004 8:53 PM CDT

Jessica is in a lot of pain. She has been started on continuous Morphine. She is coughing up copious amounts of mucus and . Her stools are liquid and look black. They most likely contain also. The lining of her entire digestive system is coming off. This is the effects of the extreme high dose chemo. She is breathing very hard and her heart rate is way up. She had just been started on oxygen. At this point, this has all been expected. Still is is a very physically painful and demanding process that she has to survive.

She is holding onto two worry stones that have angels in them. They are a clear resin type that has the angel figure embedded. One is each hand. Grandma Jeanne found them in the gift shop.

She got mail today from the nurses at St. E's Homehealth Care. She was so glad to recieve mail. She is telling all the nurses that it is a card from her friends. It took me a long time to post the address on this web site.

Wednesday, September 22, 2004 7:18 PM CDT

Jessica still had trouble with nausea last night and was up until about three a.m. I finally let her lay with me in bed propped up and that seemed to help her control her nausea enough to get some sleep. Something about laying flat must have triggered nausea.

Jessica got her stem cell/bone marrow transplant today. This took 4 hours. She is doing quite well so far. Some nausea. The transplant makes her body smell like canned creamed corn.

Her kidneys seems to have taken quite a jolt from the chemo and are not able to keep her acid/base balance, so the docs are adding a medication to help with that. At this point they feel this is temporary.

Her pain has increased quite a bit, so docs added Morphine into her arsenal of meds to help her get through this.

Grandma Jeanne has now taken over her shift and again I am back at the Nebraska House getting some much needed sleep.

One of Jessica friends was admitted today for his chemo. It was so nice for her to get to visit with him for a little bit. He couldn't come in her room, but they talked from the door and he gave her a stuffed animal kitty named "Caviar". She does not believe me yet that fish lay eggs.

Tuesday, September 21, 2004 8:42 PM CDT

Fevers have been persistent and nausea has been a bit problem. The only med she can get to control her fevers is oral, and it makes her feel like gaging and ends up throwing it up with the nausea. Soooo, yesterday we tried adding in more of one kind of anti-nausea med before giving her the anti-fever med. We are not sure exactly what set her off, but docs suspect that additional the anti-nausea med - at a little higher dose set of a paradoxical reaction. That means it had a strange and nearly opposite reaction than is usually seen. She was grabbing at things in the air and blowing at things in the air, like blowing out candles and saying that she saw red smoke. This got her quite excited and wide awake AT THREE IN THE MORNING - had her trying to "get inside you mommy" and jumping in her crib like a monkey for an hour and then for 2-3 three hours obsessed with MagnaDoodle, drawing faces. Finally at 0830 she crashed and slept.

Jessica is coughing a lot too and her mouth is so dry that she cannot swallow bread. Her saliva is getting so thick that it is like thick boogers. She tried some milk, but it curdles and she gets nauseated. Her bottom is a strange bluish brown color. We are warned by the docs that strange skin and urin color are expected. She is having the chemo-diahrea. We are warned that she may puff up because her capillaries will leak with her not having any bone marrow. We are warned that things will even get worse and will last 7 to 10 days after transplant, but since her stem cells were purged, may take even 13 days before things start to get better. Just START to get better.

Tomorrow is when she will get her transplant of stem cells, which will somehow know how to get to where they are needed and will start rebuilding her bone marrow. A miracle indeed.

And with all of her discomfort, she still is silly and giggles and is very loving, sings her songs, and trusts us to help her get through. Gets very clingy and cries a lot too. But she really tries to be her usual loving self.

From home, Tim tells me that Ardena has recieved mail from a pen pal and was so excited that she had to write back immediately. He said that he did not even have to provide any interpretation to her writing or her ideas. She does write quite well for a first grader. She was also so excited that she told the neighbor kid about it and suggested that she could ask her pen pal to be his too.

Grandma Jeanne took over with Jessica and I went to sleep at our room at the Nebraska House. Now it is time for me to get something to eat and dig in for another night of whatever comes our way.

---Toni

Friday, September 17, 2004 11:20 PM CDT

Jessica has had three days of high dose chemo designed to kill all of her bone marrow. She will have one more day of that. She has been in good spirits so far, but yesterday we started to see some effects of the chemo. She is feeling very clingy and want's to be "tickled" a lot. That is the word she uses when she wants her back and arms and legs rubbed lightly with finger tips/nails. Today she had more nausea and did not eat much at all.

Her nurse today gave us a better picture of what she faces in the next few weeks. This chemo causes the skin the the digestive tract to get extremely sore and to have injured layers. She said that the pain can get so bad that morphine is often needed to control the pain. She said that the skin in the mouth and all through the digestive tract can become black from injury. I'm supposing it's like tissue. We are doing special mouth care on Jessica four times a day to keep the bacterias under control - this will help her mouth, but won't necessarily prevent the inevitable. Mainly doing it now will help her be used to it and it will help her heal. My heart breaks knowing what she will have to go through. My only comfort is that she will have pain control available and we will be there to love her and help her through it.

I did get to ask the doctor to review the histology results with me. Dr. Thompson explained that with older kids, they often have both Aneuploid and Hyperdiploid. She said that the biggest concern with Jessica' histology is a thing called MYCN Amplification. This makes her prognosis more realistically 15% percent chance of beating this monster. Dr. Thompson is in support of trying the treatment that is designed to train her immune system to fight any new neuroblastoma cancer that may try to relapse. So, if she makes it through this stem cell bone marrow transplant still strong and healthy, she should be elligible to try that treatment. It is also a very aggressive treatment and can lots of side effects, so it weighs on my heart to put her through more, but in the end, it may be what helps her stay with us.

I have been following a web site of another little about Jessica's age who has the same cancer and similar histology. I have been in email contact with her father. She got unpurged stem cells, Jessica is getting purged. His daughter did get the antibody therapy. He said that it was really rough, but he feels worth it.

He launched a fundraising effort to raise money for Neuroblastoma Research called Lunch for Life. He was been on at least one of those morning shows and has had his story told in one of the ladies magazines. He has a goal this year of raising 1 million for research. He is hoping that Oprah will give up her lunch money for Neuroblastoma research. The web address is http://www.LunchforLife.org if you would like to learn more.

Monday, September 13, 2004 10:33 PM CDT

Please look at JOURNAL HISTORY to get info on the last two weeks. Here is more...

So, you are probably wondering what the purpose of all the scans are. IТll try to explain very short and to the point. For one, they have to make sure she is healthy enough to make it through a stem cell/bone marrow transplant. The consolodation chemotherapy is so strong that it destroys all the bone marrow and causes so much damage to the body, that a person has to be in great shape to survive it. After the bone marrow is all killed off, the transplant is given. There are agents mixed in the stem cells that are to the body, but necessary to preserve the stem cells until they are needed for transplant. The stem cells were harvested last Spring and were processed and in a freezer until now. As I am writing this, they are on a plane being shipped to UNMC.

A second reason for scans is to anticipate any interventions if any thing of concern is found. A third reason for the scans is to monitor how she is responding to what has been done so far. Then after the transplant, they will do many scans and tests again to monitor her response to the transplant.

A fourth reason for all the scans and assessments is to determine what other therapies she will be eligilbe for. If any thing of concern is found, it may make her inelegible for certain cutting edge treatments because her body may not be strong enought to tollerate the aggressive treatments.

There may be other reasons for the scans, but that is about as many reasons as I can make sense of at one time right now.

So, the weekend came after two exhausting weeks. It was our chance to get to be a family again - as close to normal as we could get. Mom went back home. Carol and John had their new toy JetSkies at the lake, Brian was there too, so I took Ardena and Logan and LoganТs grandma, Bett out there while Tim and Jessica took a very long nap. Ardena has no fear of water Ц got right on the JetSkie and took a ride. I tried to get on and got bucked off. Then I tried to drive one and felt like I was going to sink every time I tried to turn. So I took a big circle around the bay and then quit. On the drive home, the buck off was very evident as my bad knee was very sore and my ankle felt spranged. I was not gimpy for too long.

Logan was so impressed with the lake that his family planned a trip out the next day and invited Barry's parents too, who had a boat. That made it a lot easier for Jessica. We knew we couldn't let her swim in lake water for fear of infection of her line, but we felt she could ride a boat just fine. Tim said that she had her cap pulled tight on her head and smile stretched wide the whole trip. When she told me about it she said, "It was bumpy and floaty and tippy tippy! And the water splashed me!" The boat did not have a name. She thought she could name the boat Kim Possible.

Tim and I looked at a house for sale while we were out at the lake. Physical layout of the land was very nice. BUT - at the edge of the property was a small canyon type detail that someone had been dumping trash in. The guest house was really nothing more than a garage with a loft that was just bare. I'm not sure there was even a bathroom in it. The front entrance looked more like a back door. And the gutter emptied onto the cement slab that was infront of the front door - it looked to me like it sloped toward the house. No basement. Was maybe one of those homes that is half in the dirt. Did have custom brick murals by the famed artist. So I suppose the proximity to the lake and the famed artist's work justified the nearly half a million asking price. Blah!

Monday, September 13, 2004 10:31 PM CDT

Her counts finally came up so that she could go through the assessments at UNMC. Two weeks of assessments every day. So we went up there and came back every day. Exhausted!

With so many scans, the folks at UNMC wanted Jessica to try some of them without anesthesia. Because if she needed anesthesia for all the scans, she would have had it about every day! I thought that I might be able to talk her into it if I could have about 30 minutes with her and the CAT scan machine. I used all the resistance reduction techniques that I learned when working with congitive restructuring and social skills training. She was very scarred at first, but she finally bought into to idea that she could pretend she was Sleeping Beauty. She did GREAT! AND it even came in handy when she did need anesthesia for the last scan, which would require her to be still for over an hour. The anesthesiologist did not show up, she the radiology techs thought they could try some parts of the scan by having her pretend she was Sleeping Beauty again. They thought they could get those out of the way while we were waiting for the anesthesiologist. It was not something that could easily be delayed or rescheduled, as she had been injected with radioactive material. So she was trying to stay still for 10 minutes AND ENDED UP ACTUALLY FALLING ASLEEP. The techs just kept working with her, thinking that they would get as much done as possible until anesthesiology showed up. Well, they ended up being able to do the whole thing with her just being asleep Ц and anesthesiology never did show up. The head of the department called down and explained that their hands were tied because they were caught up in something unexpected and apologized. Every one was so relieved that it all worked out o.k. any way. It really helped that the UNMC radiology techs did such a great job establishing trust with Jessica.

One thing that was neat is that the oncologist at UNMC let me watch as he did the bone marrow sampling. The thing they were worried about most was that I might faint. I had no idea that an actual УcoreФ of the bone and marrow would be removed. I guess I though that they just put a needle in and sucked some out Ц not actually cut bone. They did this with what would be similar to and apple corer, but with a more effective handle on it Ц and of course, much smaller.

On the Wednesday of the first week, I got curious about the radiology file that they had me carry around to all the scans and such, so I took a look at her x-ray file. I figured that was the only one that I'd be able to understand half way. They took an x-ray at the end of July after surgery because she was having some problems with coughing and they wanted to check for lung probs. I noticed that the x-ray taken end of July made it look like the tip of her intravenous line was at the bottom of the heart! I knew that it should not be there. I thought that maybe that could explain why her line has not worked right since the end of May. A medical student was looking over my shoulder and confirmed my thought that it should not be there. So, I brought this to the attention of her oncologist at Childrens, who brought it to the attention of the surgeon, who was working at another hospital that day and could not get it scheduled until a week later. I had to trust that since the doctors thought it could wait a week, that they must have thought it not an emergency. I certainly did not like it that it looked to be like the tip of it was up against the wall of her heart. I was worried that it would puncture through or cause a heart attack. I am concerned that no doctor had ordered an x-ray to check the position of the line when it stopped working completely Ц end of May. I am also concerned that the x-ray in July clearly showed the tip of the line very low in the heart (ventricle), but the written report by the radiology who read the x-ray said that it was positioned correctly in the atrium. Hmm. I guess if I were a doctor, IТd be hesitant to trust the radiology reports, IТd have to look for myself.

So the day came for surgery to replace the line. She did just fine. The surgeon said that he had never seen anything like it. The line had even migrated further from the previous week. He said that usually they see the line coming out Ц not going in on itТs own. Even the cuff had migrated up about her arm pit and they had to make an extra incision to get the thing out. She had lots of bruising and lots of drainage. Possibly because this is the third line placed in that same general area, so they may have had to disrupt scar tissue to get the thing in. Also, she is having reaction to adhesive Ц bad oozing, so they are having us try keeping dressing on without adhesive by using a stretchy mesh tubing that goes on like a tank top if it is cut just right. ItТs kind of cute. HAHAHA. She is such an active girl. She came home and jumped and they fell out. I do admit that her skin looks better with more air getting to it. I got a band-aid that is supposed to be for sensitive skin and made it so that only a thin area on two side are adhesive to her skin. I hope that works for her.

Mom was with us the whole two weeks. Getting up at 5 or so A.M. and traveling up and back every day. We were thinking of staying in Omaha to make it easier, but she still gets the intravenous feedings, so it would have been very much a mess since she usually soaks through her diapers at night since she gets so much fluid all night. Having Mom there really helped. UNMC is a campus that is a hospital and a hospital that is a campus. There are several buildings that are linked together with tunnels or УconcoursesФ much like a huge air port is. Jessica had to have nothing to eat for some of the scans and surgery, so we took turns scouting out a cafeteria and eating without Jessica catching on. Also, Mom did a great job of scouting the best ways to get where we needed to get in a pinch. It really is very much like trying to find the right terminal to catch a plane on time in a huge air port.

Monday, August 30, 2004 8:19 AM CDT

Yesterday, Jessica woke me up wanting to play "Old Maid". She wanted to play in bed. She is three years old and didn't know the rules yet, she though that you just throw the cards. I took the time to explain the game, that you get the cards and you draw from the deck and try to find ones that match another one, and then when you have a match that means it is a pair, so then you get to put those two cards in the pair pile. She had a lot of fun getting to be in charge of checking to see if it was a true match and then putting them in the pair pile. When we got down to the Old Maid and there was not a match, I explained to her that who ever is left with the Old Maid does not win the game, because the Old Maid does not have a match. She quickly responded by saying, "Yes she does." Then she pulled the card box out from under the sheet and said "See, her match is right here!". The card box had a picture of the Old Maid on it.

Today I got to fix Ardena's hair for school. What a nice pleasure to feel like I was getting to be the kind of mom I want to be. But then at the last minute she decided she did not want her hair that way. But at least I got to brush out her hair. I really miss getting to fully be her MOM. Tim is doing a remarkable job of keeping things going here with Ardena when I have to be in Omaha with Jessica.

We go for lab work today. Jessica's counts are still not very good. Also, she is not eating much and therefore is not getting much through her system, so she is having quite a bit of problem getting her stools out. Also, it seems that she may have mucisitis in her intestine - painful. But I'm not sure about that - it seems to burn her. Doc says it's part of chemo. I wonder if it would help to have more food goind through her gut instead of getting so many calories from TPN. I'm going to ask if they can cut back the calories in the TPN to see if she would eat more. Cancer is the pits. The treatments can be as deadly as the cancer. But at least with the treatmens, there is a greater chance for survival.

Also, I'm going to ask for explanation about her Histology reports. I'm confused as to how she can be Aneupliod and Hyperdiploid at the same time. One report says one thing and the other says another. I think that this is an indicator of how aggressive or how genome instable her cancer is. I think the histology is what justifies/necessitates the aggressive treatment.

We are going to try to get her involved in another promising treatment that tries to train her immune system to make an antibody that will attack any cancer that might try to return. But at this point, her doctor at Children's and her Nurse Case Manager at UNMC said that they are not aware of a second study - so I'll have to ask for them to find out more, as new things are always being presented and it would be hard to keep up on all of it.

This immune system training is attractive to me because that is essentially what we had to do with Ardena because she did not produce an antibody that her body needed to fight off all the sinus infections that she was getting. In Ardena's case, the shots were trying to train her body to make an antibody, at it would for a while, but then it would wear off. It took four shots - when most people only need one. But it seem's that finally, Ardena is producing the antibody that she needs.

Saturday, August 28, 2004 7:32 AM CDT

The girls got us up very early and demanded to listen and dance to Johnny Cash. I'm so glad that I turned them on to Johnny Cash.

Last hospital stay was very long. It took a long time for her counts to come up. Still not eating much, so continues intravenous feedings. Docs worried that this may cause her digestive system to shut down, since it does not have food moving through it. We are so happy when she takes bites of anything.

Her central line is not reliable, so it needs to be replaced. There are delays because if they replaace it now, she is at too much risk for infections.

There are also delays in starting the stem cell/bone marrow transplant because of the central line needed replaced, but also because there are so many tests and scans that need done before the transplant and because the tests and scans can interfer with one another, so it needs to be drawn out.

Jessica is having fun but we have to keep her protected so that she does not even end up with a cold.

I have been having an emotional time lately because I have met families who's kids have relapsed or are deteriorating. Their cancers were favorable. Jessica's is not. I also have been learning about what all the patholody and cytology and typing means - and I can understand now why the doctors emphasized that Jessica's prognosis is very guarded. She looks so beautiful, it's just hard to believe that it is that bad. But it is.

Please send lots of prayers for our strength and our abiity to hang on to hope.

Wednesday, August 18, 2004 8:29 PM CDT

We had seven days at home before the really serious side effects hit. Gave us time to catch up on laundry and vacuuming. Even had a day when I took the girls to the Lee Simmons Safari - where you drive through and get to look at the animals. We took a respite nurse with us - wouldn't want to go it with just me and two girls - incase something happened with either of them. And, believe me folks - I truely believe that any thing can happen. It was a delightful day. Even got to see Elk no further than 8 feet away laying in the grass going to sleep. That's right, one got the squint-eye lala look and fell right over into a nap. I was just wondering if they could ever nap with those big antlers. The girls had a great time. Then the respite nurse knew of a good place in Ashland to get icecream cones. What a perfect way to end the afternoon. Jessica was covered in melted chocolate icecream.

The next day Jessica woke up with a fever and we went pronto to Children's Hospital. She defenitly needed to be there, as she spent several days not wanting to hardly move. Now she feels better, but has mouth sores and can't eat and still has not white blood cells. This is the worst the sores have been - seems like the inside of her mouth is oozing blood. Also, this is the longest she has gone with such low blood counts regarding white blood cells. I guess that is why just 6 of these induction chemos are planned - I don't think many kids could tollerate much more.

School starts next week. Ardena is very much looking forwardd to it. She says she is ready to learn like and angel. I'm very thankful for the support we have at the school and with the parents of her classmates.

Docs tell us that in about two months things will feel a little more normal - if no more cancer is found. Jessica will still have Radiation to go through, but shouldn't have the extreme side effects like with chemo.

I think we will have to have some sort of re-entry training to re-enter normal life. Maybe a second honey moon. Maybe a hot air baloon ride. Send us your own ideas if you would like.

Toni

Sunday, August 8, 2004 10:48 PM CDT

We are home now. Chemo 6 under our belt. Will get up in middle of night to give her anti-nausea meds. Really need to keep on top of it instead of waite till she pukes. Usually takes 3 or 4 days. Each time it tends to take longer.

Girls were having fun tonight cutting Dad's hair. Usually I have them just take a turn with the electric clipper. But tonight I let them try with scissors. Safety scissors. They were having such a good time. Jessica reached for her turn while Ardena was in the middle of a cut --- AND --- Jessica got the tip of her finger pad cut off. A slice a bit bigger than when they give her a finger poke. Still, they had a great time. Dad's hair looked a bit choppy, so I still had to use the electric clippers. I think it has been over 6 months since I gave him his last cut -- so he needed it.

Saturday, August 7, 2004 8:03 PM CDT

Chemo 6 is almost done. She has had some nausea, but no puking yet. Strange thing is, now her appetite is picking up. What does she decide is good -- spicey cheeze dip -- even doing tricks by eating it with her toes. Grandma Jeanne staying at night with her to help me get some rest. Will be "pins and needles" when we get home, wondering how she will react to the chemo. The worst of it hits days after she has had it.

I'm so thankful that we have so many people helping with Ardena. Her and Tim were going to go fishing today, but then a migraine got triggered. Sometimes just excitement will do it. I feel so alien about what is going on with her -- since I've mostly been attending to Jessica. I have no idea if the school has any pot lucks planned or any tours of the rooms or whatever. Didn't even get to see the uniforms that were ordered. I'll miss the "room mom" role that I did last year. Met some neat moms doing that. I loved taking Jessica to school to meet Ardena's class. I loved doing the photography for special projects. I loved helping with Western Days. I loved making all the tap dance skirts for the dance troup. I'll get involved where I can.

Saturday, August 7, 2004 9:00 AM CDT

Jessica started Chemo #6 on Thursday. Going well so far. Doc thought that needed to start it soon since it had been since mid June since she had had any.

Tuesday, August 3, 2004 3:44 PM CDT

Jessica's doctors were not confident either, Jessica having cold symptoms and not eating much. We will go back Thursday to see if she is ready for the next chemo. She has not had any chemo since mid June, I pray that the cancer does not make a come back during this delay.

Exhaustion is the word for Tim and I. Ardena ill with cold symptoms and strep - so both girls are home right now. Having fun and messing up just as soon as can pick up. Tim has been woken up several times a night for the last few nights with beeping machines (Intravenous feeding machine) or crying or me stealing his covers.

Mom is here again helping us catch up and helping us deal with two sick kids at once. She folded what I would estimate was 250 pounds of laundry - that's no joke. I am so thankful for her being here. She cooks and the house smells good. It is so soothing to have the smell of something cooking.

My heart is heavy for some families that I have met. More cancer was found in their children after they had completed so much chemo. One child has it in his lungs now and another has it in her brain.

Then I read about the girl with the lemonade stand - Alexandra Scott. She died yesterday. She has the same kind of cancer that Jessica does. It was found when she was one year old and she was 8 yrs old when she died.

Sunday, August 1, 2004 3:21 PM CDT

For some reason the slide show isn't working right. Seems a problem with the site where it was created and stored. Oh, well, some of you may have found the music and animation a bit irritating after while. I kind of like the collage concept that I came up with. Take a look in the Veiw Photos area. I'll try to do this every now and then.

Made pancakes outside this morning. Still trying to catch up with all the laundry. Good thing I held on to the play pen, it has been renamed as the clean laundry bin.

Ardena found an injured butterfly a few days ago and though that it needed some food. That is why there are several branches of my new Sunset Lanta that have been snapped off. It looks like a scare crow right now. I'm glad she has such compasion for animals.

Sunday, August 1, 2004 7:40 AM CDT

We are heading into some rought times ahead. I'm not as confident as I was before surgery about her readiness for this. She has been on night time intravenous feedings, but she just does not have much of an appetite during the day this time. Through family and friends, we have three weeks solid of coverage for somone to watch Ardena while Tim works. THANK YOU!

Friday, July 30, 2004 9:00 PM CDT

I've been thinking a lot about how sometimes something happens and you just know that it will be a memory etched in your mind forever...

I asked the Easter Bunny to give Tim a couple of Johnny Cash CD's this year. Well, we treated the girls to some Johnny Cash last night. Tim had on his black pants and Jessica had a bright pink outfit on. She was standing in front of him and the music came on. "Because You're Mine, I Walk The Line". She really gets the beat! Her head, eyes, shoulders, arms, hands, fingers, tummy, back end, knees, and feet were all moving to the beat - side to side and front to back. Tim was behind her doing his own beat. His black pants were the perfect back drop to have the bright pink outfit show up. Ardena was in the back ground rolling her eyes because Mom was making such a big deal out the music - must be good music to make you want to move like that. It looked like one of those well orchastrated routines like you might see on a cross between Lawrence Welch, The Red Green show, Carol Burnett Show, HeeHaw, and the Grand Old Opry.

Both girls are thrilled with the door organizer that I put up on their door. The door was too short and the hooks too thick for the door to shut and I was having quite a time figuring what to do about it. Well, finally I decided to sew two door organizers together and drape them over the door - so now they have one on each side of the door! They just think that's great and love to look in the pockets and discover what they forgot they put in there. It actually helps them want to pick up their room. I think because it's fun to put things in the pockets. It's so handy I'm thinking of putting those on every door in the house.

Friday, July 30, 2004 9:00 PM CDT

Wednesday, July 28, 2004 10:16 PM CDT

Called doc to report concerns about Jessica not drinking or eating much. She was also having some episodes of spaciness and clumsiness. Got her on I.V. fluids last night. Took her to clinic today and doc did think she needed back on the night time intravenous feedings. She did loose weight, even when she was well hydrated. Very perky tonight!

This is what my morning was like after Tim took Ardena to Jody's. I'm trying to get Jessica ready to drive to Omaha, and I can't find any of her shoes. In desparation I dump out the toy box, thinking that when my nephews helped pick up toys, that may they put shoes in there. Well, no shoes, but I did find a bunch of laundry in there. I do know that my nephews did not do that. Actually I think I recall me using the toy box as a laundry bin at one point (maybe 5 months ago) - much have forgot the laudry was still in there. So, if you ever need a new place to stash the laundry before company comes - the toy box might work well for you too.

Friend Kendrea called tonight and recalled that at one point yesterday the girls had shoes on and then the next moment they were bare foot. She suggested looking in the 13 foot tall play set. Hurray!!!! Both Ardena and Jessica had stashed some shoes up there.

Tuesday, July 27, 2004 2:22 PM CDT

Cooked French Toast in backyard on electric skillet this morning. Felt kind of like we were camping. Kendrea and kids came to enjoy with us and play on the playset. It was so wonderful to see them.

Jessica feeling O.K. I'd like to see her eat more and drink more. She's not on intravenous right now. Docs say better for her to get her nutrition the regular way if possible. She gets so distracted that she does not want to stay in one place for long. I'm trying to make some super charged foods. Using heavy whipping cream to make milk shake with Instant Carnation and some extra cholocate. 8 oz. would be about 700 cal! But, I could only get her to eat a little more than 1 oz. of it. Better than nothing. She did say it was really yummy.

Ardena O.K. too. A bit naughty at times. Is glad we are all home.

Tim looks pretty worn out. I'd like to give him some TLC, but I'm pretty worn out too.

Toni

Sunday, July 25, 2004 9:15 PM CDT

Here's a good website if you would like to learn more about all that we are dealing with.

http://acor.org/ped-onc/

Also, I found out that it was Dr. Saxton that was the co-surgeon with Dr. Raynor.

Pathology report shows that there are still live tumor cells. So still need to do the whole aggressive treatment plan.

Thank you for your prayers.

Toni

Sunday, July 25, 2004 9:15 PM CDT

Sunday, July 25, 2004 8:49 PM CDT

Today is Jessica's Birthday. Grandpa Bruce called her at the hospital and told her "Happy Birthday". She said "Happy Birthday to you too." Then she sang him happy birthday and hung up.

She feels really good today. Ate better, though not as much as she needs to. I told the docs that I thought she would eat better at home, so if there was no surgical reason to stay, I would prefer going home and keeping a watchful eye there. The docs are wanting to keep her off the intravenous feedings if she can eat enough on her own. So we'll give it a few days to see how she does.

VERY NICE TO BE HOME! We were greated with lots of love and excitement when we arrived home. Daddy presented Jessica with a new red Radio Flyer Trike for her birthday. She ate another supper. Grandma Jeanne made Salisbury Steak and that is just sooo goood. We also had fresh strawberries and birthday cake.

So, we have a few days of recooperating from the surgery before we have to head back for more chemo.

Toni

Saturday, July 24, 2004 12:41 AM CDT

Jessica looks good this morning. Drinking milk now and eating saltines and spaghettios. Her oncologist is not too worried about her stools. Still, I'll feel better when the tests come back. We did get a good sample - creative use of U-bags. That's the stinker about some of these tests - they need a good sample. Well, when you have diapers on the kiddo, it all soaks in so there goes your sample.

All in all, she is in good spirits. Even told a good knock knock joke. Knock Knock, who's there, Just, Just who, Just me. That is much better than her other knock knock joke - knock knock, who's there, Duck, Duck who, Duck poop. But then maybe it's Duck!!!!!!!!!!!! Poop!!!! So, then it makes very good sense.

Toni

Saturday, July 24, 2004 8:27 AM CDT

Things were looking really good yesterday. Jessica was actually running in the hallway. She was so glad to see her sister again.

Things took a bit of a turn in the evening. She seems to be having problems with her intesines again. Also, there was some blood detected in her GI tract, but I do not know the details of this. Tests are in the works so whatever is going on can be addressed quickly.

When stuff like this happens I just about get paralyzed. Three weeks ago she looked so bad that I we though we were going to loose her. She had lost so much weight that I could feel the tinniest bone in her spine. Could see every rib, eyes were sunk. Then she really perked up and gained so much and looked so beautiful. So now I'm back to doing what I do very well -- worry, worry, worry. It is so hard to explain to Arden why I am crying while driving home from shopping or why I start to cry in church. It is so hard knowing that what is best for Jessica and Ardena is to see us strong and hopeful - but it is so hard to be like that all the time. I read the journal of another parent with a girl just about like Jessica. They are several months ahead of us in treatment and are being treated at another hospital. But her dad writes about other kids he knows with this who have "earned their angel wings". One day they look great and the next they start having problems.

A parent and I were talking about this. How does one survive these kind of swings without getting so worn out that you can't function any more. How do you live with this so that you are actually having a life - not just holding your breath.

We talked about the mental exercise of never getting too high and never getting too low about any new developments - good or bad. Another parent says that whenever bad new comes she mentally "ties another knot in the rope and hangs on tighter".

Some uplifting news. Cousins Kim and Sean and Elkana came to visit yesterday on their way to Ride Their Bikes Across Iowa. So good to see them!!!!!!! We are all in Omaha today. Grandma Jeanne, Ardena, and I stayed in the honeymoon suite at the Raindbow House. Tim stayed with Jessica ---- she was so glad to see him last night.

Thursday, July 22, 2004 7:05 PM CDT

Hi all! My heart flips every time I read a new post in our guest book. Hope you like the new addition to the web page - the Dancing Santa Zeo Flick. I will be sure to add pics from time to time. Might even learn some other ways to share photos with you.

Jessica was in a bit more pain today and is having trouble with fever and her breathing. Doc changed pain med to help her tolerate more movement. AND Grandma Flossy and Grandpa Delmer sent the girls harmonicas! Ardena came to visit today and the girls played their new harmonicas. Her doctors were impressed with such a fun way to encourage deep breathing.

Toni

And a brief note from the other half . . . it sure is nice to have some really positive news . . . everyone at work could tell how much "peppier" (for lack of a better word) I was today. We really do appreciate all the love and support we've received . . . it's great to know that we haven't been alone through all of this. The surgery was a major milestone for us, and we now feel that we can look forward and see better days ahead. Thanks again for all your thoughts and prayers, and God bless you all!

Tim

Wednesday, July 21, 2004 12:21 AM CDT

It was good to hear from all of you from our guest book. We really needed to know of your prayers while we were waiting to hear from the doctors.

Two surgeons worked together on Jessica. Dr. Steve Raynor and Dr. Robert Cusick. Dr. Jane Kugler was the anesthesiologist. Dr. Raynor came out and told us all went well and that Jessica did well. Actually things went better than expected. They were able to get the tumor off of the veins and arteries so that they did not have to take the Kidney. They did have to take an Adrenal Gland and Some Lymph Nodes Ц and of course that monsterous tumor. In my mind I thought it would be as big as a pizza, but in reality it was about the size of an egg or a bit bigger. The chemo regimen that Dr. Gnarra, Dr. Abromowitch, Dr. Thompson, Dr. Gordon et. allЕ decided was the best for her has obviously been working to shrink it. Dr. Kugler came out to talk to us afterward also. It was very clear that she felt very pleased with the job that everyone did.

Jessica asked that Tim stay with her last night. I'm so glad that the rooms here at Children's allow for a parent to stay comfortably.

Jessica is in quite a bit of pain this morning, but is in as good of spirits as can be expected. We saved her birthday presents so that she would have presents to open each day that she is recovering.

The new Habiscus plant had itТs first bloom yesterday morning. It felt to me like a sign from God that everything would be o.k. I took Jessica out to get her picture with it. It was interesting that Jessica made a comment about the treehouse still being in our back yard. It seemed like she thought it was too good to be true that it was really hers to keep. She tells the story about her treehouse and the new plants in our backyard something like this, УThe Wish Guys came and they built it and it is in my backyard and a clown with balloons came and Santa came. It was my party! And my cousins and Ardena were there!Ф. Then she asks if we can have another party soon. I sure home she feels like having another party soon. The backyard looks so nice, like an emotional refuge. Thank you Make A Wish and all who helped our wish come true.

IТm looking forward to having MOMs over with your kids soon. We will have a really nice place to visit while the kids have a really nice place to play. Thank you for all that you have done. I miss all of you very much.

Thank you to all at Blessed Sacrament. Thank you all friends and family. My mom has been here almost constantly to help us with this. I know that many, many people have been praying for us. Your love amazes me.

Thank you to all. We feel very blessed to have all of your prayers and support.

-Toni

Tuesday, July 20, 2004 7:23 AM CDT

Today Jessica will survive a surgery. This surgery is being done to remove the rest of the tumor that is in her abdomen, possibly remove a kidney, and assess what other areas may be effected. Sometimes the imaging does not show all and often things are found that are not expected. The surgeon estimates that it may be a four-hour surgery. It starts at 1:00 P.M. We are thankful for all of our family and friends that will be supporting and praying for us during this time. We are thankful for the very skilled medical professionals that are helping Jessica. This is very scary.

Ardena is having a very hard time understanding the extra attention that Jessica is getting. As any six year old would, she is interpreting this as thinking that Jessica is more special. Last night Ardena was planning rescue situations that she could enact with her Dad. She wondered if she would be more special if she were at the bottom of a cliff and her dad was at the top of the cliff and her Dad would have to make a ladder to rescue her. It is very hard for us to know that she feels this way. Trying to talk her out of it does not seems to work simply because of her age and her thought processes at this age not being able to consider other explanations. Ardena knows and feels that she is loved, but just can't help comparing the attention thing. She is also scared about how the cancer got into Jessica. She is scared that more of her fish will die.

Jessica enters this phase of her treatment is very good shape. She had gained around 4 pounds for sure. She is eating well. She feels great. She is very spunky. She knows and feels that she is loved.

Monday, July 19, 2004 10:53 AM CDT

7-16-04 JESSICAТS BIRTHDAY PARTY WENT GREAT! When all the guests were gone, Jessica let out a sigh and said, "That was the best party ever!". A thirteen foot tall play set from Make A Wish in our back yard, lots of cousins and friends, Daisy Doe the clown making balloon animals and having us sing songs, Santa coming and bringing presents for all the kids, Singing Here Comes Santa Clause and Jingle Bells, News doing interviews, Ardena walking around with bright yellow snorkeling gear and flippers on, pizza, cake and ice cream, new landscaping, and Jessica was feeling great!

Thank you to all who helped this party be a success and happen on time. Many, many, details needed worked out. We are very thankful for all the support and generosity.

Thank You to Aunt Joanne for walking for Jessica in the Relay For Life in Ogallala. She tells us that it rained the whole time she was walking.

7-17-04 This morning we all got up and went out to the Camp Creek Threshers and shelled and ground corn by hand, watched a black smith, pet a 3 day old miniature colt, ate ice cream while sitting on a hay bale, ate home made bread and butter, saw the butter made before our very eyes, live music, pink lemonade, the girls picked out an orange straw hat for my birthday present ,and we got a ride back to the Explorer in the back of one of those cushman-type small farm trucks - it was the handicapped taxi. It was neat, they had all of this shuttle service to help everyone get to where they wanted to go, or to just ride and look around at it all. For the regular folks, there was a flat bed with benches for many people, but then there were several small motorized vehicles going all over too. Tim was in his element. All the tractor exhaust smell was making him feel frisky. The girls now want an antique corn sheller. Jessica has been singing songs about milking cows.

The homemade bread and butter was so good that they didn't even want to wait to take it to a table to eat - just sat down on the floor and ate it. For supper, I picked up some heavy whipping cream and we made our own homemade butter by shaking it in a container -- like forever -- rinsing well and adding a little salt. Spread it on hot biscuits -- OH, WAS IT GOOD. The kids just loved shaking and shaking and shaking and checking and checking and shaking and shaking and testing. Now they really believe me that butter can really be made from cream. I felt like SUPER MOM.

7-18-04 Today we looked at an acreage near Utica. Hard to think about moving at a time like this, but after a while, with this kind of cancer, you realize that it will always be a time like this - because it can always come back. That's the part that really leaves a knot in the pit of my stomach -- it's not like the usual kind of thing that can go wrong and you just go get it fixed and be done with it. That just reinforces the reality that every day are children are with us is a miracle Ц even for kids who do not have cancer. Hug your kids and all of your family members, make sure they feel loved by you.

Toni

Tuesday, July 13, 2004 9:51 PM CDT

Another active day for all of us. Ardena went with a family friend to pick out a new beta fish and some neon tetras. Her other beta, Rainbow Daisy, passed away yesterday. He took ill a few days ago. Color looked bad. Wasn't eating. Yesterday I saw him perk up a bit and do a few dashing efforts around the tank. I like to think he is happy to see me when he does that. Well, then he just kind of sunk to the bottom and sat there. The next time I looked, he was in traditional dead fish mode, but hadn't foated to the top yet.

So, she and Shannon went fish shopping today and then we held a funeral tonight. We now have a cross in our back yard that is made of lath and we said a prayer and took a picture. Felt more like an Irish Wake than a funeral of a beloved pet.

Grandma Jeanne arrived this evening and was greated with lots of yippees and hugs and kisses.

Grandma is here in preparation for Jessica's Birthday Party/Make A Wish/Santa Combo Party. Yes, you saw right. It's Christmas In July.

Also, tomorrow night Grandma Jeanne is watching Toni's and her sister's kids so that Carol and Toni can celebrate their birthdays with their hubbies. Belly Dancing is on the agenda.

Toni

Tuesday, July 13, 2004 9:51 PM CDT

Sunday, July 11, 2004 11:07 AM CDT

Things still going good. She looks better every day. She is still excited about going to the Relay For Life.

Last night she kept stalling her bed time by asking for me to tell another Relay For Life Story. She just loved to hear me talk about her going there and playing and having all the people clap for her. She says, "Everbody was clapping for me and they were happy and I was happy. It was the Relay For Life!" They she made up a song about the Relay For Life.

Toni has found out the password from Tim for this journal. The one on July 9 was posted from Toni. As this one is too.

The treatment schedule and all of the hospitalizations from complications have us left with very little time. On top of that, Ardena was hospitalized about a month ago with and infection in her foot that started to streak up her leg. Docs had her in hosp for I.V. antibiotics.

We are now having a fairly good time.

Toni

Friday, July 9, 2004 10:05 PM CDT

We recently had a nearly two week hospital stay because of complications. She really looked bad. Had infection in bowel and was severely dehydrated and stopped eating. Lost over three pounds. Docs pinned it downed quickly and got the infection and dehydration under control under control. After a week of her not starting to eat well, they started her on intravenous feedings. WOW - what a difference it makes. She looks beautiful and is full of energy and she even has an appetite now. I think the bananas she ate this afternoon were hight octane. She still doesn't eat enough to gain weight on her own, but I was afraid she would loose interest in eating if she got fed through her veins. Doc is trying to get her really built up for the upcoming surgery that she had to endure to remove rest of tumor and most likely kidney. It feels good to feel in a hopeful place at the moment and to see her feel good. We will have 10 days before we have to head back to hospital for surgery. I plan on having us live it up.

We went to Relay for Life tonight. Jessica and Ardena. Our neighbors with Logan and Sydney. And Toni's Aunt Betty. That was neat. Some other fun stuff. She will be featured along with 4 other kids from our State for a Make A Wish fundraiser that will be aired on local T.V. and radio stations. They plan on interviewing her.

We really needed these positive events to focus on. For months I have been afraid to even dream or hope for her future. Afraid to think about her starting Kindergarden, afraid to think about her joining Girl Scouts and going to summer camps and learning to ride a bike and graduating and getting married and having kids. When I did think about it, I would just cry because I felt so much dispair. Having these events at least gives us the joy of focusing on a future that is attainable for sure. Tonight was attainable, I'm thinking most likely next week will be attainable. Eventually I hope to be able to dream and plan for her a month ahead, then a year ahead. And then I dream of the day where I will feel free to dream like I did before we found out she had cancer. I just love both of my kids so much and enjoy dreaming of their future and them growing up and wanting to get to know them as the adults that they will become.

She needs these positive events too. All she has known since February is hospital stays, feeling sick, fevers, transfusions, chemo, needle pokes for blood and shots in her legs, and getting poked and proded by several people every day. She really needs her spirits recharged be being allowed to be a kid - just a kid - for long periods of time. She really had a great time tonight. So did all the kids. Relay For Life was at the Salt Dogs Stadium. They had great music playing. Jessical really has the beat and a good swivel hip to go with it.

June 8, 2004

Round 4 of chemo is now history. Jessie came home again on May 28th, then went back last Wednesday (June 2). Had to miss Dad's birthday, but we will celebrate tonight when she gets home again. Still has lots of energy and a mischievous sense of humor (as demonstrated by squirting a syringe full of water at her doctor one day).

We fixed up a bed for Grandma Jeanne in the basement, so she can stay and help take care of Dena while she's out of school. Should be an interesting and exciting summer!

Friday, April 2, 2004 10:11 AM CST

Back to the hospital we go! Jessica started round 2 of chemo yesterday . . . now we're waiting to see how this round goes. Toni and Grandma Jeanne are there with her again.

Friday, March 26, 2004 1:28 PM CST

We're home for now! Round 2 of chemo starts next week. Stay tuned for more information . . .

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