History

Monday, December 31, 2007 7:29 AM CST

We are back from a fun Christmas cruise with my family. (Thank you Grammy and Papa.) It was a nice "break", but it was much harder than I anticipated. The hardest part about getting 5 people ready to go, was getting ONLY 5 people ready to go. I can't explain it, but I felt like I was leaving Anna behind and it was hard to go.
While we were gone, Will learned what it was like to be the youngest. Anna used to get all the attention and this time it was directed at Will. It was mostly unwelcome as he doesn't see himself as "little". I also had to adjust my thinking this week as I took pictures. For the past 2 years, most of our pictures have been of Anna, or other people with Anna. She is not in any of the ones I took this week. She won't be in any more---hard, hard thought. Just being able to travel was a new feeling. I can only describe it as an unwelcome freedom.
Although the week was tinged with sadness, it also contained moments of joy and respite. I was able to have my "Wish" come true as I swam with the dolphins in Cozumel. The kids enjoyed being with their cousins, snorkeling, tubing, playing mini golf, and dancing with Mom and Dad in the disco. Will's new favorite desert is creme brulee and Jacob likes lobster and escargot. We came home with shark tooth necklaces, a Mexican nativity scene, and lots of shells (I made Audra leave the ones that were still alive back in the cabin.)
Christmas certainly was different aboard a ship. There was nothing there that reminded us of past holidays with Anna. It was simply her absence that was noticed.
We were looking forward to coming home, but when we got here another "wave" knocked me down. "She's not here!" I cried. No matter where we go, or how long we stay, she won't be here when we get back. Hard. Hard. Hard.
So I am thankful for the moments of peace and respite and know that those will increase as time goes by.
I am thankful for your prayers for us this week.
I am thankful for the promises and hope for the future.
I am thankful for what I have.

Sunday, December 23, 2007 9:37 AM CST

If you liked the story the other day about Will and the pennies, you'll love this one. Obviously my son requires more supervision in the school restroom.

I went to the school on Thursday to watch Audra's play. (She was a perfect Mrs. Claus by the way.) When Will's class came into the gym I noticed that he had his coat tied around his waist. I called him over to me and asked him if he had wet his pants. He said "No". So I asked why he had his coat like that and he said, "Because there is pee on my pants."
"Wait, you just said you didn't wet you pants."
"I didn't."
"How did they get pee on them?"
"It's not my pee."
(At this point I became concerned that my poor baby was a victim of some sort of bullying incident in the restroom.)
"How did this happen Will?"
"I dared 'Carl' to pee in a cup and some got on my leg."

Ho-ho-ho Merry Christmas!

(Names have been changed to protect the not-so-innocent.)

Friday, December 21, 2007 8:04 PM CST

A big thank you to our "Friends in Christ" for the basket of goodies they left on our porch. What a wonderful Christmas surprise. We will certainly enjoy our family night out. Thank you. Thank you. Thank you.
I received another early Christmas gift today in the form of a poem written by our friend Cheryl Ritchie.

A Family for Anna

When God sent Anna down to earth
He had a plan, you see.
He put her with a mom & dad
Who would lead her faithfully.
Through all the trials she would endure--
The tests, the shots, the pain;
They were somehow part of God's great plan,
For the Glory she would gain.
Millions knew Anna through her parents words,
But the loudest words of all--
Were the ones not spoken by this family...
"That with God you can not fall".
You can stumble sometimes and skin your knee,
You can trip and lose your way--
But God picks you up and dusts you off,
And you know it's all okay.
Anna taught more to this big world,
Than most people ever will.
And her family's faith and love of God,
Will go on living still.
So Anna got her family
But they got so much more.
They got to watch God's precious child--
wise beyond her years,
Teach us all what we should know...
That with living--there comes fear.
But anytime that you're afraid
And day seems dark as night,
God will be right there with you
And turn darkness into light.
And you can walk right to that light,
Or dance, if you're inclined,
and God will wait with open arms
to say, "Anna, you are mine".

Thank you so much Cheryl.

Friday, December 21, 2007 10:15 AM CST

Update 12:30pm: The power is back on after less than 24 hours, but don't tell Phyllis. I took all my laundry to her house this morning!

We are without power again, which seems to depress me. When you take away the lights, the noise, and the activity, Anna's absence can be "felt". That's the only way I can describe it. I can "feel" her absence. The only remedy I know of is to focus on what I have instead of what I don't have and to be thankful for the gift of Jesus. Christmas is not about me. It's about Him.

My gift to you this Christmas is a little story that I posted last year.

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is a great miracle.

Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. ” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

(author unknown)

Thursday, December 20, 2007 8:15 AM CST

No inspiring words today, just something Will said when he got in the car the other day. You remember Will---the sweet one who puts love notes under my pillow, wonders what Anna is having for lunch, and gives such fitting answers to other people's questions.
He crawled in the back seat, so proud of himself, and said, "I got 8 pennies out of the toilet today!"

Wednesday, December 19, 2007 7:01 AM CST

We had a nice day yesterday. Thank you for your well-wishes.
We went to a fancy restaurant downtown then afterwards we went to another restaurant across the street. I wanted to see the "Angel" tree that was decorated by the kids from the clinic. There is a picture of Anna's eyes and nose hung prominently in the front and center of the tree.
While browsing through the restaurant's gift shop, I noticed that they were selling the Ally's House calendars. I couldn't help myself. I had to tell the lady who was working at the shop, "This is my daughter" (pointing to the July page). Of course she asked how she was doing. I started crying and told her that Anna died 3 weeks ago. I said, "Because you are selling these calendars, I want you to know that the kids in them and the kids represented on that tree out there are real people. I want you to show people her picture and say, 'I met her mom'". By this time, she was crying too and simply said, Thank you for telling me." So if you are still searching for the perfect gift, try the Painted Door Gallery. They have some great calendars for sale. And if you buy one, tell the lady that you know Miss July.

PS. After dinner we went to look at watches. My gold one has been broken for quite a while. I tried to look at Target this afternoon, but some lady fell and broke her leg right before I got there and they were trying to block off the isle. I felt strange shopping for watches while she was moaning a few feet away, so I left. (Yes, these things really happen. And yes, there were plenty of people helping her.) So, Richard suggested going to Dillards and looking there. I found one right away---a beautiful gold watch with sparkly diamonds (not real of course) and a BUTTERFLY on both sides of the watch face. It is just another sweet reminder of my little butterfly-girl. Thank you Lord.

Tuesday, December 18, 2007 6:58 AM CST

"Many waters cannot quench love; rivers cannot wash it away...." (Song of Solomon 8:7)

Happy 14th anniversary to my wonderful husband.
If I had it to do over again.......I would.
I love you.
M

Saturday, December 15, 2007 8:47 AM CST

"Though he brings grief, he also shows compassion according to the greatness of his unfailing love. For he does not enjoy hurting people of causing them sorrow." (Lamentations 3:32)

How can I be sad this morning as I watch the snow falling outside? It is so beautiful! Will reminded me today of the time Anna wanted to play in the snow. She didn't want to go outside because it was too cold (anything below 78 degrees was too cold for her.) So we filled the ice-chest with snow and brought it inside. Anna made a snowman in the bathtub!
This morning as the kids are talking about sledding later today, I realized that I don't have an excuse to stay inside anymore. I like staying inside!

Last week we took the kids to Parents Night Out at the church. When we picked them up, Will's teacher told us about a conversation she overheard. A little boy came up to Will and asked, "Are you Anna's brother?" Will said, "Yes". The boy said, "Did you know she died?" Will said, "Yes". The boy said, "That's really sad." Will looked at him before he ran off to play basketball and said, "Not for her."

Friday, December 14, 2007 10:19 AM CST

Several people had warned me that I would cry at the grocery store. I wasn't sure what that meant or why I would do that.
They didn't tell me it was the pudding.
I think I have bought pudding every time I've gone to the store for the last 2 years. Anna took her pills in pudding so we always had to have it. When I saw it today, I realized that I didn't need it anymore.
And that's why you cry in the grocery store.
I understand now.

Thursday, December 13, 2007 8:26 AM CST

We are back home. We were on our way to get repacked for our next destination when our power came back on last night. The kids are still asleep so they must be worn out from our adventure. I think it was good for me. Staying home with everyone just makes Anna's absence seem so obvious. Last night we were having our family devotions around the table. The passage was Philippians 4:11-13.
"I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength."
The commentary said that we should focus on what we have, not on what we don't have. I started crying as I realized the implications for my life today. I am trusting that I will learn to be content in my current circumstances if I can focus on what I have and not on what has been taken away.

Wednesday, December 12, 2007 11:18 AM CST

Diary of the powerless....
Yesterday we went to Target for hot chocolate. There were lots of people "like us" who just wanted to be in the light for a while. Then we went to Richard's office where things seemed to be carrying on as normal. We charged up our phones, ate lunch then went across the street to the library. There seemed to be a lot of people staying warm and dry among the books. I checked out a few more books on grief (all I seem to be reading these days). Next we managed to get ourselves invited to a friends house for dinner (they were expecting us the next night anyway). We checked our house (still dark) packed some clothes and went to dinner. After dinner we went to ANOTHER friends house to spend the night. That is where we are today. It has been quite an adventure. I had planned to spend this week with my mom having pedicures and going out to lunch. My mom couldn't get here and pedicures are not the priority right now. Maybe this is the best thing for me today. We certainly have enjoyed the fellowship. I still cry, but I haven't had much time to think.
Audra is supposed to star in her school play tomorrow, but right now her school doesn't have power. Crazy days.

Tuesday, December 11, 2007 1:01 PM CST

I can't tell if my depression is compounded by the fact that we are iced in without power and the house is cold and dark (we are warming up at Richard's office at the moment) or maybe I would be MORE depressed if I wasn't focused on "survival" at the moment. Either way it's a struggle.
I had to laugh at Shelley who called me to say, "If you are out, you can come get the book I borrowed." I said, "Shelley, I am 'out' buying candles and firewood!"
We may show up on her doorstep later tonight so I better be nice.
For you non-Oklahomans. We are having an ice storm. The main problem is the trees which are breaking because of the ice and falling onto the power lines. They are also falling across the streets. We had to make the kids come in yesterday because we were afraid they would be impaled by a falling limb. We waited in line for an hour last night to eat at Braums because it was the only place we could find near our house that was open. We also spent some time browsing in Barnes and Noble, but I think they have some sort of rule against people sleeping there. Sleeping was actually okay. I piled on so many blankets that I had to start taking off my clothes because I got hot. That's okay until you have to get up and go to the bathroom :-)
Anna would NOT be enjoying this. She wouldn't be able to watch TV. She hated being cold. And she couldn't eat whatever she wanted. I'm glad she is safe, and warm, and happy. It is weird not having her to worry about.....

Saturday, December 8, 2007 9:18 PM CST

Oh Carol, I'm not trying to hide from you. I have been to a basketball game and a concert today. I'm busy.
I was hiding from Lynda this afternoon however. I knew she was coming and I just crawled in bed and pulled the blanket over my head. You see I cleaned out the hall closet today. I had to decide what to do with Anna's hats and shoes. That was sad. Then I found out that Lynda's daughter was having an ice skating party and Anna wouldn't be there. Even if she was alive she was never strong enough to go ice skating. That was sad. Plus I had decided weeks ago to give Anna's jeep to Lynda's daughter. They were the same age and Laney had been praying faithfully for Anna. Plus she lives out in the country where she can really enjoy a jeep her size. But giving that jeep away combined with all of the other thoughts running through my head was just too much. After I had my break down, I fell asleep for a couple of hours. Grieving is exhausting. One of the books I read compared it to rehab. I am having to learn how to function without a part of myself. I have to learn new ways to think and to live. Another book said that one of the goals of grief is coming to terms with the fact that you won't see your child again in this life. I know that in my head, but my heart still doesn't want to accept that thought.

God continues to comfort us. Just yesterday we read this in Hosea chapter 6.
"Come, let us return to the Lord! He has torn us in pieces; now he will heal us. He has injured us; now he will bandage our wounds. In just a short time, he will restore us so we can live in his presence."
And in Psalm 126:5-6.
"Those who plant in tears will harvest with shouts of joy. They weep as they go to plant their seed, but they sing as they return with the harvest."

I KNOW God will restore us. Yesterday I went for a walk, but I turned left instead of right. I went a new way. It wasn't the way I always go. It wasn't familiar. It wasn't as comfortable. I didn't think it would be as beautiful. But I was surprised. There were new things to see. It was still beautiful....just different. And I kept thinking about the verse in Jeremiah 33:3 that says, "I will tell you great and unsearchable things you do not know." God WILL give me a new song to sing. God WILL pull us up and set us on our feet again. It is NOT easy. It is painful and sad and lonely and YUCK. But I am anticipating seeing great and mighty things along this new path. Things I never would have seen if I had things my way. I will trust that it is enough.

Thursday, December 6, 2007 11:16 AM CST

I am supposed to be out looking for a Mrs. Santa costume for Audra's play next week, but instead I am sorting through notes that people wrote at the service last week. I thought I would share one of my favorites. It was written by Jacob's best buddy Jack.

"Dear Salamys,
Anna may have never done anything great like George Washington did to touch the heart of America, but that doesn't mean that she will ever leave the hearts of those who knew her......I know she will never leave my heart or mind for the kind of girl she was, a happy, kind, and funny child. I'm sorry she had to die at such a young age."

Thank you Jack for such a nice note. Anna certainly was no George Washington, but she seems to have done great things anyway.

Wednesday, December 5, 2007 5:23 PM CST

This may have been just another day for me to get through, but it was a banner day for Audra. She has been counting the days until she could get glasses. We just picked them up a few minutes ago. On the way home she said, "I'm shivering. I think it's from joy!" ( I think it was from the 46 degree weather and no coat, but I'm glad she was happy.)
I do have an Anna story I want to share. It was one of the last funny things she said. (She would not think it was funny though.) We sat down to a delicious Thanksgiving dinner with all the trimmings and she said, "Why couldn't we have enchiladas?"
I think next year we will.
M

PS. Anna is Miss July in the new Ally's House calendar. She is featured in her swimsuit and pink boots. The calendars can be purchased for $10 from Ally's House.

PS2. Becca from Las Vegas, could you please send me your address? Audra has a letter for you and we've lost your address.

Tuesday, December 4, 2007 10:36 AM CST

I followed several kids on the web just like many of you followed Anna. After they died I had to stop going to their websites because it was often too depressing. Perhaps because I didn't want to see what was ahead for me..... I know many people will stop checking this site now that Anna is gone and that is sad for me. I have appreciated those of you who grew to care about her even though you never met her. It helps me to know that other people miss her too. Thank you for telling me how her story changed your life, but you know it wasn't her. It was the God that we trusted in every day---and still do. He is the only one who can make something good out of something so bad.
We have had several "signs" of Anna since her funeral, but unless you have been through this experience you will dismiss them as wishful thinking by a grieving mother. I know that my tender God can do ANYTHING he wants to and can even comfort me in little details that no one else notices.
I have had to do some hard things the last few days......
* returning library books we had checked out to read to her
* taking a shower without interruptions
* leaving the house without a hug and a kiss (She NEVER let me leave without those. She would yell "hug and kiss!" if I forgot.)
* emptying the dishwasher. It took me two hours yesterday because I kept getting distracted. I wasn't crying, but I am having trouble focusing and staying on task.

Today I am meeting Richard at the cemetery for a meeting of some kind. I am taking lots of flowers to put on Anna's grave. Our house smells and looks beautiful, but the petals are starting to fall.
Thank you for praying for peace and strength.
Love,
Marlo

Sunday, December 2, 2007 4:33 PM CST

Give me faith to see things as they can be.... as they will be, not just as they are.

I wrote that note from the sermon today. Going to church wasn't as difficult as I feared. My favorite part was when a little girl from Anna's class came up and gave me a hug.
The house is very quiet. I don't think we've had the TV on all week and Anna liked to have it on all the time. It is a strange (and unwelcome) freedom I have gained. I'm certain she is enjoying hers more than I am!
Audra just called from the Hannah Montana concert. There was a group going and they had an extra ticket and offered it to us this morning. She was decked out in Hannah-garb and riding off in a limo when I last saw her. I'm glad she is having fun.
Will spent the service this morning drawing a job chart of things he can do for money. He wants to raise 10 dollars for cancer research and spend the rest on Christmas presents. His first question after we told him that Anna had died was, "Who will I give my present to?" He had gone shopping Friday morning and bought Anna's present. It was the first gift under our tree. I told him that I had whispered to Anna what he had gotten her and I told her that we would put it under our tree every year.
Jacob has started a blog to record his thoughts on life. If you would like to read it you can go to thoughtsofjacob.blogspot.com
Life goes on....
M

Saturday, December 1, 2007 6:55 AM CST

E'en for the dead I will not bind my soul to grief;
Death cannot long divide.
For is it not as though the rose that climbed my garden wall
Has blossomed on the other side?
Death doth hide,
But not divide;
Thou art but on Christ's other side!
Thou art with Christ, and Christ with me;
In Christ united still are we.

(author unknown)

Friday, November 30, 2007 6:36 AM CST

I know I don't have the words to convey to those of you who weren't there yesterday how beautiful, wonderful, and precious the services were. I am still amazed at my respose to the day as I was carried along by God's grace. It was perfect. I believe with all my heart that yesterday was one of those days written in God's book before one of them came to be. I had a lot of time over the years to think about what I wanted that day to be like, but the way everything came together was supernatural---beyond my control.

I want to record a few things in this journal so that I won't forget;
* Each of my children had a helium balloon to release at the gravesite. For some reason, the limo driver opened Audra's door after she was already in and her balloon "escaped" in front of our house. I just told her that Anna would get hers first.
* When we got to the cemetary, it was very solemn. I was sitting in the limo watching the pallbearers carry the casket to the grave. I guess Audra was watching too, because the limo driver opened her door and she fell out onto the ground.
* During the song "I'll Fly Away" I let Audra have my balloon to release. She let it go and it got stuck in the tree. I told her that was even better because now we could enjoy that balloon every time we came to the cemetary and we could get Anna another one later.
* Will's job was to pass out Dum Dum suckers to the guests before the service (Anna's favorite candy). I had several people tell me that Will was throwing the suckers to people in the pews.
* When we got home I asked Will where he got the candy he was eating. He said, "At the party." I hope that is how he remembers the day!
* My former student from when I taught missionary kids in Kenya, drove by herself from Tennessee to represent her family and to honor Anna and to bring their love to me.
* My uncle who felt a special bond with Anna because of his liver transplant flew in from California.
* Our Baylor friends and roommates who flew and drove in from far away. They brought love and laughter to the day.
* Our friends the Saxons who share our bond of suffering drove in from Waco. Even though I didn't get to speak to them, it means a lot to me that they were there.
* The boys were supposed to have their first basketball practice last night. Richard called Will's coach to find out the details and it turns out that Will's coach was one of our limo drivers. God gave Will a coach who was THERE. He will be sensitive to Will's needs this season.

Thank you to everyone who had a part in the services yesterday. Thank you to everyone who came from near and far. Thank you to those who couldn't come, but were praying for us. Thank you for continuing to pray for us as we experience many "firsts" this month.
Love,
Marlo

Thursday, November 29, 2007 6:45 AM CST

"From this day on I will bless you." (Haggai 2:19)

The love of God a perfect plan
Is planning now for thee,
It holds "a future and a hope,"
Which yet thou canst not see.

Though for a season, in the dark,
He asks thy perfect trust,
E'en that thou in surrender "lay
Thy treasure in the dust."

Yet He is planning all the while,
Unerringly He guides
The life of him, who holds His will
More dear than all besides.

Trust were not trust if thou couldest see
The ending of the way,
Nor couldst thou learn His songs by night,
Were life one radiant day.

Amid the shadows here He works
The plan designed above,
"A future and a hope" for thee
In His exceeding love.

"A future"---of abiding fruit,
With loving kindness crowned;
"A hope"---which shall thine own transcend,
As Heaven the earth around.

Though veiled as yet, one day thine eyes
Shall see His plan unfold,
And clouds that darkened once the path
Shall shine with Heaven's gold.

Enriched to all eternity
The steadfast soul shall stand,
That "unoffended," trusted Him
Who all lifes pathway planned.

----Freda H. Allen

Wednesday, November 28, 2007 6:29 AM CST

"My heart is breaking as I remember how it used to be." Psalm 42:4

I never knew how hard it could be to get a drink of water.
I spent the evening helping set up the memory room at the funeral home. It is so beautiful and full of everything Anna. I was doing okay. But when I got home and went to get a drink of water, I opened the cabinet and saw Anna's special cups and was overwhelmed again with grief. The emotions come in waves that threaten to sweep us off our feet. We are still able to laugh. We just cry a lot more often than we used to.
All of our plans so far are going smoothly. Pray that the service will be a beautiful celebration of Anna's life and a comfort to those who are struggling with why this had to happen. I realize this is testing the faith of many people---not just me. May the people who come find comfort and hope.
If you are coming from out-of-town please email me at the address below and let me know.

Tuesday, November 27, 2007 9:18 AM CST

Anna Jane Salamy, beloved daughter of Richard and Marlo, flew home to Jesus Sunday morning November 25, 2007 after battling cancer for half of her young life. Anna was born in Oklahoma City on May 29, 2002. She was diagnosed with hepatoblastoma, a rare pediatric liver cancer, in February of 2005. She received a living donor liver transplant from her daddy in June of that year. After the cancer came back in her new liver, she received a second liver transplant in July of 2006. She suffered through numerous rounds of chemo and two additional surgeries to try to get rid of the “weed” that was inside her. Through it all she continued to fight and to live. Her body was weak, but her spirit remained strong. Her story touched thousands of lives through her website www.caringbridge.org/ok/annajane.
She will be greatly missed by her parents, her brothers Jacob and Will, and her sister Audra. She is also survived by her grandparents Dick and Phyllis Salamy of OKC, Ray and Audrey Huber of Wichita, her great grandmother Jameela Salamy, her great grandfather Jesse Droke, her Aunt Shonda and Uncle Marc Haught and her cousins Kyle and Kory Haught.
Her family would like to thank the doctors and nurses at DuPont Children's Hospital in Delaware and OU Children’s Hospital for trying everything they could to rid Anna’s body of cancer. They would also like to thank Good Shepherd Hospice for their tender care during the past few months.
Her parents request that anyone who would like to make a charitable donation in Anna’s name would consider two places that helped them during the past 2 ½ years, D.D. Kirkland Elementary School (designate your gift to be used to build a new playground, 6020 N. Independence, OKC, OK 73112), or Ally’s House (PO Box 722767, Norman, OK 73070).
A display honoring Anna's life will be set up at Mercer-Adams funeral home in Bethany, OK, on Wednesday, November 28, 2007 from 8am to 7pm. There will be a private burial service on Thursday, November 29, followed by a memorial service at 11 a.m. at Northwest Baptist Church in Oklahoma City.

Tuesday, November 27, 2007 4:37 AM CST

There will be a "Memory Room" honoring Anna's life set up at the Mercer Adams funeral home for people to view on Wednesday, November 28 from 8am to 7pm. We will have a private burial Thursday morning followed by a memorial service at 11am at Northwest Baptist Church in Oklahoma City.

I just wanted to share the scriptures that were in my readings from November 25 and 26 in the One Year Bible that I use. Perhaps they will comfort you as they do me.

1 Peter 3:18 Christ also suffered when he died.....(what a wonderful reminder---Anna suffered SO much in death, but so did Jesus) He suffered physical death, but he was raised to life in the Spirit. (as was Anna!)
4:1 So then, since Christ suffered physical pain, you must arm yourselves with the same attitude he had, and be ready to suffer too.
4:6 Although their bodies were punished with death, they could still live in the spirit as God does. (Anna lives in the spirit. God is alive and real and so is she.)
4:12 Dear (Marlo), don't be surprised at the fiery trials you are going through, as if something strange were happening to you. (This was like a letter addressed to me this morning.)
13 Instead be very glad---because these trials will make you partners with Christ in his suffering, and afterward you will have the wonderful joy of sharing his glory when it is displayed to all the world.....
19 So if you are suffering according to God's will, keep on doing what is right, and trust yourself to the God who made you, for he will never fail you.
5:10 After you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation.

Monday, November 26, 2007 11:27 AM CST

Sunday, November 25, 2007 2:51 AM CST

Anna traded in her broken down "earth-suit" for her glorious new body at 1:25am. After listening to the song "Fly To Jesus," we told her to fly to Him and she did--in my arms with her daddy holding us close. We ushered her into her heavenly Father's arms. She must feel so free now. Her hurt is gone, ours remains. We will miss her so.

Update 10pm---Thank you for your overwhelming response to Anna's death. It hard to believe it just happened this morning. I think I could write a book just on the thoughts I've had in the last 24 hours. There's no way I can condense them into anything coherent at this point. I thought I was prepared for this, after all I had a long time to get ready. There is NO WAY to prepare for this. The intensity of the pain is amazing---and I thought I had hurt before!
We are staying busy planning a memorial service for later this week.
Pray that we will be able to sleep tonight. The bed will seem so big.
Pray for the other kids. They are all struggling. Will said, "My stomach hurts because of Anna." I told him, "Mine too buddy."
Pray for the details of the service to be worked out.

Update 5am---I slept until 4:22am which I thought was very good. Thank you for praying. The house is quiet and peaceful right now. I was sitting here reading a book about heaven and I got the urge to share a conversation that Will and I had today.
I was telling him how Anna was with Jesus and he said, "What if she is shy of Jesus?"
I am SO glad that God gave us the trip to North Pole City (pictured above). I said, "Was Anna shy of Santa?" No, she climbed right up on his lap and could have sat there all day I think. She never "warmed up" to most men (too many of the ones in her life were doctors). I really only remember her snuggling with her daddy and grandpas. I thought she would be "shy of" Santa---even she wasn't sure how she would react. But she knew that this "Santa" was loving, gentle, and kind and she trusted him immediately. I told Will that Jesus is even better and even more loving, gentle, and kind. I know that Anna was not afraid to go right to him--- just like she did to his servant Santa Dan.

Saturday, November 24, 2007 1:10 PM CST

"Can anything ever separate us from Christ's love? Does it mean he no longer loves us if we have trouble...or (are) threatened with death?...No, despite all these things, overwhelming victory is ours through Christ, who loves us. And I am convinced that nothing can ever separate us from his love. Death can't, and life can't...Our fears for today, our worries about tomorrow....can't keep God's love away." (Romans 8:35,37,38)

"For we are not our own masters when we live or when we die. While we live, we live to please the Lord. And when we die, we go to be with the Lord. So in life and death, we belong to the Lord." (Romans 14:7-8)

Anna has been mostly unconscious since yesterday afternoon. Her body seems to finally be shutting down. We have reached a milestone of sorts. She has been sick for 2 years and 9 months and she was 2 years and 9 months old when she was diagnosed.

We covet your prayers as we walk through these waters.

Friday, November 23, 2007 4:49 PM CST

Although we were thankful to have Anna with us yesterday, she was not able to enjoy the day. We are having trouble finding the right meds to make her comfortable without making her agitated. Everything that says it's supposed to make her drowsy, seems to have the opposite effect. She has asked for food, but hasn't eaten more than a couple of bites---nothing today. This afternoon we are trying valium to relax her so that she can sleep. I feel so inadequate as a "nurse" to be administering all of these meds---especially when nothing I try seems to be helping much. Pray that we will figure out what she needs. Pray that she will not be afraid.

Wednesday, November 21, 2007 8:25 AM CST

"Are any among you suffering? They should keep on praying about it. And those who have reason to be THANKFUL should continually sing praises to the Lord." (James 5:13)

Wake up to the sunlight
With your windows open
Don't hold in your anger or leave things unspoken
Wear your red dress
Use your good dishes
Make a big mess and make lots of wishes
Have what you want
But want what you have
And don't spend your life lookin' back

Turn up the music
Turn it up loud
Take a few chances
Let it all out
You won't regret it
Lookin' back from where you have been
'cause it's not who you knew
And it's not what you did
It's how you live

So go to the ballgames
And go to the ballet
And go see your folks more than just on the holidays
Kiss all your children
Dance with your wife
Tell your husband you love him every night
Don't run from the truth
'Cause you can't get away
Just face it and you'll be okay

Oh wherever you are and wherever you've been
Now is the time to begin
So give to the needy
And pray for the grieving
Even when you don't think that you can
'Cause all that you do is bound to come back to you
So think of your fellow man
Make peace with God and make peace with yourself
'Cause in the end there's nobody else

Turn up the music
Turn it up loud
Take a few chances
Let it all out
'Cause you won't regret it
Lookin' back from where you have been
'Cause it's not who you knew
And it's not what you did
It's how you live

(How You Live, Point of Grace)

Happy Thanksgiving. Be thankful!
Love,
The Salamy Family

Tuesday, November 20, 2007 1:27 PM CST

We are trying a pain "patch" today that is supposed to last three days. After only a few hours, I had to give Anna some IV morphine in addition to whatever is in the patch. She is finally asleep in the middle of the living room floor listening to Christmas music. I am trying to get the house ready for company. I am thankful that I don't have to do any of the cooking or baking. My mom and my sister are taking care of that.
Someone asked if they could send Anna anything. She doesn't seem to be able to enjoy "things" very much. The cards that we get are nice for me, but unless there is a dollar bill inside they don't mean much to Anna. She still loves to be read to and she still watches movies so I guess she would like gift cards to bookstores or Blockbuster. (We have so many books and movies that it would be hard to choose one we didn't already have.)
Thank you for wanting to do something. We continue to be blessed each day with surprises. We even had to turn down a very kind offer this week to view the Christmas lights from a helicopter. Thank you for praying that we will make good holiday memories.
Love,
Marlo

Monday, November 19, 2007 9:23 PM CST

A bit of a scare this morning. Anna started screaming in pain saying, "Can't you do something!?" By the time the nurse got here, the pain had subsided. We now have IV pain medicine to add to our arsenal of drugs.
Tonight has been pretty "normal". We'll see what tomorrow will bring.....

Sunday, November 18, 2007 11:45 AM CST

"O (Marlo) trust the Lord! He is your helper; he is your shield." (Psalm 115:9)

We have had three good days. Yesterday Anna even felt good enough to leave the house. We gave her the choice of anywhere she wanted to go. She chose Sams --- AGAIN. She said, "I'm going to try everything they have." When we got there, it was very busy. She said, "All these people must be hungry!" I told her that not everyone went there for the free samples, but as we were waiting in line after line for our turn, I changed my mind. I think everyone does go there for the samples!
Today she is feelling puny and tired again. We stayed home from church and watched the Greater Ft. Worth Christmas Pageant on video. Richard used to be a disciple and I was an angel. Those were fun times. The crucifixion scene always gets Anna talking about dying. She knows very well that we ALL are going to die. She is glad that we won't die like Jesus did because that looks like it would hurt. We talk a lot about trading in these caterpillar bodies for our beautiful butterfly bodies. She and I both understand and believe that this world is not all there is and that what is to come is even better. Even though I KNOW that, the anticipation of the separation is what is hard to deal with. Think what it would be like if you were getting your child ready to join the Peace Corps and you wouldn't see them for 2 years. You would try to make the most of the time you had left with them, but that time would be tinged with sadness as you anticipated saying goodbye. That is a TINY word picture of what it is like for us (and others in our situation). Our separation seems like it will be forever, but I know it is just for this lifetime. And no matter what people think, no one lives forever.

Friday, November 16, 2007 1:41 PM CST

Anna had a good day yesterday. I told Richard that was his gift. By "good" I mean that she laid on the couch all day and didn't throw up. I mean that she only took one nap instead of four. I mean that I only had to give her tylenol instead of morphine for her pain. I mean that she talked to us. That is a "good" day for us.
Today I was able to run to the store while the social worker was here (another sign of a good day is that I can leave the house for a few minutes). While I was out, I saw a friend I hadn't seen in a long time. We only spoke for a few moments, but I could tell she was burdened by her lot in life. She has four small children. "It is so hard", she said. "There's no time for ME".
I told her yes it is hard and I know how she feels. Then I left the store and started to cry---wishing that those were my problems again. I used to think having four kids was so hard too.
Love,
Marlo

Thursday, November 15, 2007 7:01 AM CST

Happy Birthday to my wonderful husband!!!!!!
I don't deserve the unfailing, boundless love that you lavish upon me, but I am so thankful for it. You are the best husband and father I could ever ask for. I'm lucky to get to spend my life with you.
Love,
MRS

Wednesday, November 14, 2007 7:03 PM CST

Anna had a miserable night last night. She finally fell into a deep sleep around 6:30am and then slept until 11am. She has stopped throwing up and is back to her "I'm hungry, but I don't know what I want" phase. She asks for things and then she may or may not eat them. She had a breakdown tonight because I didn't have any cucumbers for her pizza. Right now she is keeping Richard busy running back and forth to the kitchen making all sorts of things. I can hear him whistling while he works. This really is better than how it was last night.
Love,
Marlo

Tuesday, November 13, 2007 8:45 PM CST

"To Him who is able to keep you from falling...." (Jude 24)

It was a good and bad day. It was good because my friend Pam came and spent the day with us, but it was bad because Anna was sick to her tummy all day. When she feels miserable, she wants me to sit right next to her. Richard is trying to take over for a few minutes while I get ready for bed. Pray that Anna will be able to sleep tonight. She has only slept for a few minutes at a time today.
Thank you Summers for taking our dirty dog to get cleaned up. Thank you K for the Christmas books. Thank you Ms Vestal for making a conference "house-call" to tell us how Will is doing in school.
Love,
Marlo

Monday, November 12, 2007 9:02 AM CST

"What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see." (Hebrews 11:1)

Anna was more alert yesterday----and hungry. She had spaghetti for breakfast, then we read Ruth Graham's book "One Wintry Night". It is pretty much the entire Bible story from creation to the resurrection. Anna sat through the entire book. (I would recommend reading a chapter each night as you get ready for Christmas.)
After lunch, our neighbors came over and put up our Christmas lights. That was something that probably wouldn't have gotten done this year, and the kids would've missed it. We had a fun time raking leaves and wrapping lights. Anna even came outside for a little while and watched the work in progress. Thank you to everyone who helped!
Love,
Marlo

Sunday, November 11, 2007 6:36 AM CST

"Without wavering, let us hold tightly to the hope we say we have, for God can be trusted to keep his promise.... Do not throw away this confident trust in the Lord, NO MATTER WHAT HAPPENS. Remember the great reward it brings you! PATIENT ENDURANCE IS WHAT YOU NEED NOW, so you will continue to do God's will. Then you will receive all that he has promised." (Hebrews 10:23, 35-36)

The Lord continues to bless us in order to make this journey as easy as possible. We received many unusual gifts this week including free pest control, flu shots in our kitchen, and neighbors who want to put up our Christmas lights. A friend who went through this valley this summer told me to ask for specific things because God would be very tender towards us. I never even thought to ask for those threee things, but they were just what we needed. Of course we are still blessed by the encouraging notes we get. Thank you, thank you, thank you.

Yesterday Anna slept most of the time. I was grieving the loss of her smile, her voice, the way she makes us laugh. She was still here, but those things were missing yesterday. Thank you to friends who came over this weekend who brought joy and laughter to our home.
Love,
Marlo

Friday, November 9, 2007 5:41 PM CST

Today we could tell Anna was feeling better because she was grouchy (a step up from lethargic). I must have sounded desperate in yesterday's post because several people offered to come sit with me today. My mom even drove down from Wichita just to do my laundry. Thanks Mom! I was also grateful today for a visit from my neighbor who just happens to also be my pediatrician. She reassured me that there is indeed a stomach bug going around. Since we aren't going to the clinic anymore, it is nice to have a doctor at least look at Anna. (Of course we appreciate nurse Kelly and nurse Vickie's visits as well. They are both great.)
Anna found something new that she likes---pumpkin cookies from City Bites. I think they are good too, but I only got a teeny tiny taste because Anna wanted the whole thing. I think maybe someday I will write a cookbook with Anna's favorite recipes and restaurant choices. It would be very interesting reading......
Love,
Marlo

Thursday, November 8, 2007 8:40 AM CST

Update 5pm---
Anna stopped throwing up and has slept most of the day. She only went to the bathroom one time, so we are waiting for the nurse to bring a bolus of fluid. Hopefully she will feel better tomorrow.

Anna started getting sick yesterday around 3pm and then kept throwing up all night long. She finally stopped around 7am this morning. The nurse is coming out to determine if she needs IV fluids, nausea meds and/or pain meds. We tried oral meds last night, but they didn't stay down long enough to help. This change happened so quickly. I don't know if this is a temporary "bug" or if it's the beginning of the end. Richard and I didn't get any sleep last night (except for a brief period where I dreamed that my friend Stacy had twins and named one Pamela). We got the other kids off to school so things are quiet around here for the moment.
Marlo

Wednesday, November 7, 2007 2:11 PM CST

"I will be a sanctuary to you." (Ezekiel 11:16)

Sanctuary (def.): a place of safety, refuge, or protection

Anna has felt yucky and has a low fever. She still enjoys eating and being read to. The last two days we strongly encouraged (and prodded) her to finish her painting for the Art With a Heart show. It's not until February, but they have already "commissioned" the artwork. Our friend Katie came over and helped Anna paint a beautiful butterfly. Art is not Anna's favorite thing these days. She has to be "in the mood" and those moods are few and far between. After a joint effort by Anna, Audra, me and Katie, we have a finished product fit for display.
Hopefully Anna won't have a fever when she wakes up from her nap. If she does, we will have to try to figure out what is causing it and whether or not it is something we want to treat. The nurse told us that we would only treat it if it was really making her uncomfortable. Her comfort is our number one goal these days.
We would like to thank "Summers" for the Taco Bueno delivery service we have enjoyed the last two days. I burned out on Bueno a few months ago, but Anna seems to be able to eat it every day. I tried to get her hooked on Subway, but it didn't go over so good.
Love,
Marlo

Monday, November 5, 2007 2:18 PM CST

"Though he brings grief, he also shows compassion according to the greatness of his unfailing love. (Lamentations 3:32)

It's hard to believe that last week I was writing such words of woe as, "The days are hard and I don't expect them to get any easier"....and then we had such a great weekend this week. We have learned when we have good days, to receive them as a gift. We used to get excited and think Anna was getting better. Now we are just happy to have them every now and then. The nurse has told us that we will have good days and bad days until eventually we stop having good days. We thought we had reached that point last week when we had several bad days in a row. We are so glad we were wrong!
Even in the midst of grief, the Lord continues to show compassion to us through the kindness of friends and strangers. His mercies are new every morning as he blesses in new ways each day. Thank you to whoever put the little yard decoration in our flower pot. It made us smile. Thank you to Leslie and Maryann who brought soup for lunch last week. Thank you to Audra's new pen pal in Las Vegas for sending her a package. Thank you to those of you who call to let us know you are praying. Thank you for the candy and the restaurant cards. All of those things encourage us and lift our spirits on those "hard" days.
Today has been pretty normal for us. The OT came and tried to get Anna working on a Thanksgiving project. We made a trip to Jason's for lunch, but Anna got sick so we came home. She is planning another trip back there for dinner if she feels good. She is also looking forward to seeing Sittie tonight. Mostly, she has been on the couch watching Christmas movies while I try to tackle the laundry. Even if you are suffering and God is teaching you wonderful truths and stretching your character, your family still needs clean underwear.
Love,
Marlo

Saturday, November 3, 2007 10:23 PM CDT

I know many of you are praying for a miracle. Well, as far as I'm concerned, yesterday was a miracle. There were so many "highs" and no "lows". Anna woke up and wanted to help me in the kitchen. When she feels good, she loves to sit on the counter and "help" me cook. It's GREAT when she starts the day that way. We enjoyed Audra and Will staying home from school with us. We all played a game together. Anna felt so good she didn't even take a nap. Around 3pm I was upstairs and I heard, "Mom, help!" She had gotten off the couch and gone to the closet to get some shoes. She was bent over and couldn't stand back up. (Her muscles are too weak.) She hasn't put shoes on for a long time so I said, "Do you want to go somewhere?" She said, "Yes. Sams." So I said, "Let's go." Richard met us and we took all three kids (Jacob wasn't home yet). We had the best time looking at all of the Christmas stuff and tasting the samples. Anna asked for three helpings of the ones she really liked. She sat up in the cart and never got sick. When we got home she still felt good and we fixed dinner then watched a movie. We also received gifts from Uncle Howard and "Santa Claus" in the mail. Our "cup" was running over!
The gift from "Santa" got me thinking about the "real" Santa. I thought we should make the most of Anna's "feel good" days so I suggested a trip to North Pole City. I had never been, but I had heard good things about their Santa. I called last night to find out if he would be there today and Santa called me back! He said, "I hear you have a special child." I told him that I thought all four of my kids were special, but that I did have one we were particularly concerned about this year. He met us at the North Pole today and we had some private time in his sleigh. He gave the kids candy, a book, and stuffed animals. He talked about the real meaning of Christmas and how important it was to get along with your brothers and sisters. (All day long Anna has been reminding everyone when they start fussing at each other, "Remember what Santa said!") She has also said that she already misses Santa and do we have his phone number and can we please go again? Besides talking to Santa, she enjoyed riding the train and picking out an ornament. She said, "This is the best day of my life!" After all of that she was still going strong so we ate lunch at Jason's Deli (thanks to our neighbors the Lakes.) Anna ordered her usual baked potato, but ended up eating my wrap and fruit.
I am SO thankful for the last two days. They are gifts I can treasure in my heart.
Love,
Marlo
PS. See the new picture on the photo page.

Thursday, November 1, 2007 9:56 AM CDT

Thank you to those of you who stopped by last night. At least one family made the drive to find we weren't home! So sorry! All the excitement was just too much for Anna to resist. After staying home while the other kids went trick or treating in the neighborhood, she decided she wanted to go to the church's Trunk or Treat. We took her, but it wasn't long before she was cold and ready to go home. I knew she didn't feel good, but we try to help her do whatever she wants to do. That is really hard---to see her wanting to do "kid" things and not being able to.
She did something last night that she hasn't done in months. During the middle of the night she asked to go sleep in her bed. Every now and then she will do things that remind me she is getting older (even though she is not getting bigger). Like recently when she told me she was embarrassed to still be using a sippy cup. We have had lots of spills since then since she keeps a cup by her on the couch, but I'm trying to oblige. She has also expressed anger when I laugh at the funny things she says (and repeat them to other people). She says, "That's not funny!" She is growing up.....but she's not.
Love,
Marlo

PS. Happy Birthday Grammy!

Wednesday, October 31, 2007 11:40 AM CDT

After reading yesterday's post, the people who came over are probably thinking, "All that was going on in her head? She looked so.....normal!" Thank you Stacy for coming so that I could take a shower. Thank you Mom and Dad for a late lunch. Thank you Kay and Arlene for bringing the party to us. Thank you Myrtle for the meals. Thank you Shelley for the phone call. I am grateful for every note, every gift, every offer to help.

Attention neighbors who are reading this:
Anna doesn't feel good enough to go trick-or-treating. She is content to stay home with her Sittie and Pop. I thought it would be fun to do a little "reverse" trick-or-treat for her. If you would like to stop by tonight and "treat" her, you are welcome to do so. Thanks!

Love,
Marlo

Tuesday, October 30, 2007 9:45 PM CDT

"Can anything happen without the Lord's permission?" (Lam 3:37)

I actually wrote that verse on the palm of my hand today. I was struggling so with anger. Once I get started down that path, it's hard to stop. ("If only they hadn't done that." or "If they had done this instead of that.") I had to stop and remind myself that men (even doctors) do not have the power to control our destiny. The things that happened in Anna's treatment, right or wrong, were somehow permitted by God. He had the power to heal her at any point during the last 2 1/2 years regardless of what treatment or surgery she did or did not have.
I am not angry with God. I believe that he is good and what he does is good whether it appears that way or not. (I know some of you are pulling your hair and screaming, "How can she say that!") I HAVE to trust that that is true. Not because I made it up, but because his word says so. God is so much bigger than me there is no way I can understand his ways. Do I have to like it? No! Am I happy about it? No! Is my grief overwhelming at times? Yes! Do I wish this had never happened? Of course! Do I see how this can "work together for good?" I can see good that has come out of it. Is the good I see worth the price I am paying? God used the death of his Son for the world's ultimate good. I trust that he is using my daughter's death for someone's good. Yours? Hers? Mine?

Monday, October 29, 2007 1:44 PM CDT

I am so glad I have things to share besides how Anna is doing (she actually had a better morning).
Yesterday we got the Toys R Us catalog in the Sunday paper. Audra went through and circled ALL of the things she wanted. When she showed me, I told her she needed to go through and add everything up to see how much it would cost. It was over 1,000 dollars! This morning she brought the book to breakfast and made a new list. This time it added up to $635. Without me even saying anything, she crossed everything off her list except for four things and added it up again---$105. That we can do. I was so proud of her for narrowing it down to what she really wanted.
Funny Anna story----Two nights ago after I took Anna to the bathroom in the middle of the night, I was trying to snuggle with her. She said, "Are you on your pillow?" I said "No, I'm on yours." She said, "Well you're not giving me much room." HA
Thank you for praying. God has graced me with peace (today). It is so easy to lose that peace when I look at the "waves" around me. Pray that I will dwell in the shelter of the Most High.
Love,
Marlo

Sunday, October 28, 2007 8:04 PM CDT

I stayed home from church this morning with Anna and I totally forgot that I had arranged for someone to come take a family picture after church (a Christmas gift for Richard's folks). The photographer called when she was on her way. I had to make a quick change and add some face paint to my natural-stay-at-home self. The pictures turned out okay. Anna has a mad face in most of them. She did not appreciate being a model. Thank you Shelley for sharing your time and talent.
It's difficult for me to go to church. I'm always afraid someone will say something that will make me start crying. Tonight I had to go pick up Jacob. I was careful to brush my hair, put on lipstick and even freshen my breath--so that I would at least appear to have it all together. I had to laugh at myself when I got there and realized I was wearing my slippers!
Thank you for all of the sweet notes. They are such a blessing and encouragement.
I have to trust in Psalm 100:5 that says "For the Lord is good. His unfailing love continues forever...."
He is GOOD whether my circumstances are good or not, AND His love is not just for this lifetime, but for eternity. Therein lies our hope.
Love,
Marlo

Saturday, October 27, 2007 9:46 PM CDT

I'm sure Will has no idea of the impact of his actions. Thank you for writing and letting me know that his little gift touched you as it did me.
Anna is not doing well. We had hoped to take her to Frontier City today (thanks to Ally's house), but she and I had to stay home. She cried that it wasn't fair and that she wanted to ride the ferris wheel because she had never ridden one, but she couldn't sit up long enough to get dressed. She continues to ask for all different kinds of food, but she doesn't eat. I think some of her problems may be caused by the increased dose of morphine I have been giving her the last few days. I will check with the nurse tomorrow to ask about alternative pain relief.
Someone posted in the guestbook that they admired me for not dumping my grief on my kids. I came really close on Thursday afternoon when Audra was having a meltdown over her Halloween costume (or lack thereof). She needed something to wear the next night for Boo at the Zoo (thank you Kristi for taking her). I wanted to scream back at her "I don't care one bit about your costume---don't you see that your sister is dying!!!!" I held my tongue, but it's hard to do when your other kids are fussing about things that don't matter. (I know there are many moms reading this who can say "amen" to that.) By the way, if I ever write a book about how to help someone whose child has cancer, I will include "Offer to help their other children choose a Halloween costume" on the list of helpful things to do.
So the days are hard and I don't expect them to get easier. Pray that I will be able to rest, trust, and submit to God's plan for our family. Pray for opportunities to talk to the kids (including Anna) about what is happening. Pray for us to be able to make Anna comfortable.
Thank you for "holding the ropes" for us.
Love,
Marlo

Thursday, October 25, 2007 10:03 PM CDT

"Those who live in the shelter of the Most High will find rest in the shadow of the Almighty." (Ps 91:1)

The last two days have been hard. I'm not ready to write the details yet, but I did have something I wanted to share. I thought I was handling things pretty well and hiding my feelings from the kids, but at least one of them noticed. My Will must have seen that his mom was having a rough time. Tonight before he went to bed he told me, "When you wake up in the morning look under your pillow." Well, when I was putting Anna to bed I moved my pillow and there was a little scrap of paper with the words "I love you" on it with some hearts drawn around the edges. Underneath the paper was a five dollar bill. He gave me his best. Precious. Priceless.
Marlo

Thursday, October 25, 2007 2:34 PM CDT

Someone emailed me and suggested that it was time to change the front page picture on this website. Well, you will have to put up with that one because it is my favorite, but I did change the photo page. Hope you will enjoy seeing what we have been doing.
Marlo

Tuesday, October 23, 2007 7:59 PM CDT

"This I declare of my Lord; He alone is my refuge, my place of safety; he is my God, and I am trusting him." (Ps 91:2)

Today was mostly good. I can't get Anna to walk, but other than that she was okay. (I always think she's doing good until I see the neighbor's 5 year old running around outside. BUT, Anna is doing better compared to yesterday.) She asked for pizza for lunch, but by the time it was ready, macaroni and cheese sounded better. Tonight she ate two plates full of dinner. I had to set the timer and make her wait a few minutes after the first plate so that she wouldn't get sick. Thank you to our friend Jennifer who brought the Dip-N-Dots for dessert.
Other thanks-----
Ms Shelley for running an errand for me and for bringing a goodie bag from the store.
Nurse Kelly for reading to Anna and playing Connect Four and not doing anything that hurt today.
Ally's House for the Taco Bueno cards and the tickets for this weekend.

We continue to have MUCH to be thankful for.
Love,
Marlo

Monday, October 22, 2007 1:55 PM CDT

A couple of weeks ago I got an email from a friend in Texas. She made the comment that what I am going through is difficult and no one would want to be me right now---except her. Her son died this summer and she would give anything to smell him again, kiss him one more time, or tell him she loved him. So on those days when even I don't want to be me, I will be thankful for what I have.
After a good weekend, Anna is spending today day sleeping on the couch. BUT, I can still smell her. I can still kiss her. I can still tell her I love her......
Love,
Marlo

Sunday, October 21, 2007 9:27 PM CDT

"Courage, my soul and let us journey on!"

We had a busy weekend (for us). On Friday afternoon we finally made our trip to Build A Bear. Audra and Anna enjoyed making their new "friends". Thank you to the two "real" friends who financed that little adventure.
After we were done, we took the kids to eat in the food court. Anna decided that she wanted mashed potatoes--one of the few things you CAN'T get at the mall. I finally talked her into the baked ziti and then she ended up eating my Subway sandwich. Oh well!
On Saturday some friends from church invited us to their house for an apple party. We had caramel apples, apple muffins, apple crisp, apple fritters, apple cheesecake and apple pie. The kids bobbed for apples and had an old-fashioned sack race. It was a lot of fun and we were glad to be able to go.
Today we had our early Thanksgiving dinner. (Gee, our lives really do revolve around food don't they?) We enjoyed getting together with family and friends in addition to all the good things to eat. Anna made herself sick on the desserts, but she seems to be feeling better tonight.
Satisfied,
Marlo

Friday, October 19, 2007 3:15 PM CDT

My conversation at 3am this morning when Anna got up to go to the bathroom:

"Is there any Mexican Stack left?"
"Yes."
"That's what I want for breakfast."
"Okay"
"Is the night almost over? I'm starving."

She had three bowls full for breakfast at 9am! Some of you who live in different parts of the country (or even a different country) are wondering, "What is Mexican Stack?" So today I am including the recipe.

Layer the following ingredients on your plate.
You can leave out the things you don't like. Anna does not eat everything on the list.

Cooked rice
Fritos
Chopped lettuce
Chopped tomatoes
Ground beef (browned with tomato sauce, garlic, salt, pepper, onions, and black beans)
Cheese sauce (Cheese soup or melted Velveeta)
Chopped pecans
Chopped olives
Pineapple tidbits
Shredded coconut
Picante Sauce

I hope you will enjoy it as much as Anna does!
Love,
Marlo

Thursday, October 18, 2007 9:53 PM CDT

"There is hope for your future," says the Lord. (Jer 31:17)

Yea! Will is doing better today. He lost a tooth so right now he is waiting up for the tooth fairy.
We ALL had lunch at Incredible Pizza today. Anna loved sending me back and forth to the buffet for more mac and cheese, red sauce, and cucumbers with ranch dressing. It was the first time she has been out of the house in a long time. She was feeling good and her AGC was 1,800 so we took advantage of the moment. A BIG thank you to IPC for lunch and the game cards. Everyone had a great time. If she's still feeling good tomorrow we may finally get to go to Build A Bear :-)
We are also busy getting ready to celebrate Thanksgiving this weekend. Anna is on the "See Food" diet. If she sees it, she wants to eat it. She has started seeing ads for Thanksgiving and she wants a dinner with all the trimmings. This will only be the second turkey I've ever cooked so hopefully it will turn out okay. I didn't see any reason to wait another month. We can be thankful more than once, right?
Love,
Marlo

Wednesday, October 17, 2007 6:34 PM CDT

Anna has continued to have a good day, but Will has gotten worse. I had to go pick him up after his field trip because his fever came back. Richard took him to the doctor and she thinks it is just a virus. We know in our heads that she is probably right, but our emotions tend to get in the way as we remember how Anna's illness started with a fever that wouldn't go away. Please pray that Will will feel better tomorrow.
Love,
Marlo

Wednesday, October 17, 2007 9:43 AM CDT

Anna is having a great morning. She even wanted a piggy-back ride downstairs when she woke up. She actually ate breakfast at the table instead of the couch and then wanted to help me make chili. I wasn't planning to make chili at 8am, but the "ONLY" thing that sounded good to her today was frito chili pie. It is now cooking in the crock pot and she keeps asking if it is done. Meanwhile, she has eaten parts of a bagel, oatmeal, mac and cheese, peas and rice, rice crispie treat, and a plate of ham, cheese, and crackers. She is sitting on the couch watching Curious George, playing with her Polly Pockets, and answering the phone when it rings. (When she feels bad she refuses to talk on the phone so I know she feels good today.)
Will and Audra are back in school today! It is lonely here without them, but they will be back home tomorrow for Fall Break. Thank you for praying for Will to be able to go on his field trip today. He still looks a little droopy, but his temperature was back to normal.
Hopefully we will be able to do some fun things together during the break.
Love,
Marlo

Tuesday, October 16, 2007 3:41 PM CDT

Anna had a good night's sleep and has had a better day. She has had some pain after she eats, but she hasn't spent the whole day moaning. Her thoughts continue to focus on her next meal or snack. Richard was in Ardmore today so Pop was in charge of the lunch run to McDonalds. Thanks Pop!
Will and Audra stayed home again with low fevers. They enjoyed playing with their new Webkins (thanks to Mrs. Rudolph's class).
Trying to enjoy today,
Marlo

Monday, October 15, 2007 8:47 PM CDT

"May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ." (2 Thess. 3:5)

As we continue on, we are thankful for the endurance that comes from Christ. Enduring is HARD.
Today I had three sick kids to care for, which turned out to not be as bad as I expected. Audra and Will have something bad enough to keep them home from school (low fever), but they feel good enough to play video games and build forts. I was thankful that they were both sick so that they could entertain each other upstairs while I took care of Anna downstairs. She felt pretty yucky today. She was either sick or asleep all day. I hope tomorrow will be better.
Pray that she will be able to sleep tonight. She has been having trouble with reflux and it keeps her awake (and us too!) Her labs were messed up today so we still don't have an AFP. I have to believe that God is keeping that hidden from us so that we won't make a wrong decision. As long as we don't have any information about what is going on with the tumors, we will contine with the treatment that we have been doing.
Pray that Will will be better by Wednesday so that he can go on his field trip. I know that's a little thing, but it's important to him.
Thank you, Thank you, Thank you....
Love,
Marlo

There's only One who knows
What's really out there waiting
And all the moments yet to be
And all we need to know
Is He's out there waiting
To Him the future's history

And He has given us a treasure called right now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

And if it brings you tears
Then taste them as they fall
Let them soften your heart

And if it brings you laughter
Then throw your head back
And let it go

And breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

(Miracle of the Moment, Steven Curtis Chapman)

Sunday, October 14, 2007 6:38 PM CDT

Just a couple things to add to the excitement of things around here.
Anna's incision from her old port came open yesterday. Ugghh! We called the doctor and she said they don't stitch them back up this far out from surgery. So now we have to do "wound care" and hope that it will heal from the inside out. I have done a LOT of things that I never thought I could do over the past couple of years, but I had to ask Richard to be in charge of this daily task. Of course the first time he did it, I had lots of helpful comments!
The other thing is that Will has a fever so he feels crummy.
Even with all that, I was able to take Jacob and Audra to see Phil Joel this morning at our friend's church. It was great! We even got to have lunch with Phil and his wife Heather after church. Richard and Jacob went back for the concert tonight.
Love,
Marlo

Saturday, October 13, 2007 4:31 AM CDT

Richard and I went to a benefit for the Ronald McDonald House last night. It was quite the gala with fancy dresses and famous people. I wore my $5 funeral skirt and dusted off (literally) my black pumps and Richard thought I was quite stunning.
We had a famous actress sitting at our table and I would know who she was if I watched any station besides PBS. A LOT of money was flying around the room during the live auction. We're talking $5,000 for a painting by our nine year old friend Brian from Altus! When they ran out of stuff to auction, people just started pledging money. It was crazy!
I ended up with a pillow from the silent auction. It just happened to match my living room perfectly----and I was the only one who bid on it. Everyone else was buying chances to win diamond necklaces and trips to New Mexico. All during the program I fought the urge to stand up and say "I'm not one of you. I'm one of 'them'!" I wanted to tell those people what it was like to actually stay in a RM House for months at a time and how the one I stayed in had 50 rooms and the one in our town only has 15, and it's not enough... BUT I didn't.
When we got home, Anna was asleep on the couch and the other kids had their hair painted crazy colors from the school carnival they went to. They didn't have fancy clothes or famous people at their event, but I bet they had even more fun than we did.
Love,
Marlo

Thursday, October 11, 2007 2:36 PM CDT

"Lord, you are my strength and fortress, my refuge in the day of trouble!" (Jer. 16:19)

Yesterday was a long day. Richard and Anna did great. I struggled through it---mostly because I was doing it in my own strength which gave out after the first couple hours of waiting. Anna spent the day listening to books, watching TV and planning her next meal. When we left at 7:45 we had to go by Jason's Deli for macaroni & cheese AND a baked potato. She stayed up eating until 11pm. She got up early and finished the leftovers for breakfast and then her Pop delivered both things again for lunch. The nurse came at noon to change her dressing and then she finally crashed and is taking a long nap now.
Instead of putting in a new port, they put in a central line. This means that she has two tubes coming out of her chest---not pretty, but something she will have to get used to. Even though we don't need it now, the doctor is assuming we will need it soon for nutrition and meds. The good thing is that it will eliminate any more "pokes" for lab draws. The bad thing is that she will have to put up with weekly dressing changes, daily flushes, and just the feeling of having tubes taped to her chest. I really struggled with letting them put the line in. I just wanted to have my little girl free from all tubes and lines and "stuff" for a little while. It bothers me that she will never be able to take a bath again without taping up her chest and keeping it dry. I guess I have get used to things too.
The pain seems to be manageble with tylenol and motrin. Thank you for praying for that.

Other thank you's.....

Thank you to those of you who helped with the kids yesterday and fed them last night. They had a great day.

Thank you to my "Secret Encourager" for the new clothes. The other day I was getting dressed and Will said, "Why do grown ups always wear the same clothes?" I guess I am in a rut. Richard and Anna both liked the outfit you sent. I put it on last night and Anna said, "You look cute."

Thank you to Mrs. Rudolph's class at Covenant Christian Academy. They gathered special things for our family and sent them in a big box that arrived yesterday. What a treat! I gave Anna one of the presents after she had her dressing changed today. I will save some of the others as surprises when she has to do "yucky" things. I love all of the cards and verses that the children made. Thank you parents for your generosity. It was a nice way to end the day.

Love,
Marlo

Wednesday, October 10, 2007 8:14 PM CDT

A quick note to let you know that we just got home. We got to the hospital at 10:30 and had to wait until 5:45 to go to surgery. It was a LONG day, but Anna did great. I was MUCH grouchier than she was. She is hurting, hungry and tired right now.
Thanks for praying for us today.
Love,
Marlo

Tuesday, October 9, 2007 1:10 PM CDT

Specific requests (added at 10pm):
*Pray the Anna would sleep late tomorrow. She eats ALL the time so going without food is difficult. Pray that tomorrow would be one of the days that she sleeps until 10am.
*Pray against a spirit of fear. Anna is VERY afraid of surgeries so we will call this a "procedure". Pray that we will know how much to tell her and when to tell her.
*Pray that her pain would be minimal and manageable. She has suffered enough.
THANK YOU!!!!

I thought things were only going to get worse....then they got better....and now they are going to get worse again. Anna had a better day yesterday. There were several times when she didn't stay where I put her. That may not seem like a big deal, but I am used to carrying her everywhere so when I would go to where I had left her, and she wasn't there, it was a surprise! She even let me take Audra to gymnastics and stayed with Sittie without making me come home early. When I got home Anna asked me if she could take gymnastics. What was I supposed to say? I finally stammered, "I think you are not old enough." Anna looked at me like I was crazy and held up her fingers and said, "Mom...I took it when I was 2!" She is too smart for me. So then I mumbled something about needing to be able to walk farther.
This morning she was having another good day....talking, laughing, eating, walking a little.....then we were changing her clothes and I saw metal. Her port had broken through the skin. It's not bleeding and she didn't even notice, BUT it means that she has to have surgery tomorrow to take it out. Yuck! We are thinking we will cancel the MRI scheduled for Thursday because I don't want to do two traumatic things back to back. Maybe God doesn't want us to see what is going on in there since this is the second time something has happened the day before her MRI.
So pray for us tomorrow at 10:30. It is supposed to be an outpatient procedure. The oncologist wants to put another port in, but I don't think Anna has enough subcutaneous fat to do it. We'll have to wait and see what the surgeon says. The big risk of surgery at this point is her inability to heal. We wouldn't be doing this if we didn't have to.
Love,
Marlo

Monday, October 8, 2007 9:07 AM CDT

Thought that I was all alone
Broken and afraid
But You were there with me
Yes, You were there with me

And I didn't even know
That I had lost my way
But You were there with me
Yes, You were there with me

'Til You opened up my eyes
I never knew
That I couldn't ever make it
Without You

Even though the journey's long
And I know the road is hard
Well, the One who's gone before me
He will help me carry on
After all that I've been through
Now I realize the truth
That I must go through the valley
To stand upon the mountain of God

As I travel on the road
That You have lead me down
You are here with me
Yes, You are here with me
I have need for nothing more
Oh, now that I have found
That You are here with me
Yes, You are here with me

I confess from time to time
I lose my way
But You are always there
To bring me back again

Sometimes I think of where it is I've come from
And the things I've left behind
But of all I've had, what I possessed
Nothing can quite compare
With what's in front of me
With what's in front of me

(Mountain of God, Third Day)

Saturday, October 6, 2007 8:34 PM CDT

We no longer have good days and bad days. We have good parts of the day and bad parts of the day. Today Will and Audra went to a program for siblings of kids with special needs and Jacob went to a friends house. We thought it was the perfect opportunity for a lunch date. Some friends came over and offered to stay with Anna, so we left (she was fine). We went to La Baguette and as soon as they brought us our food the phone rang and Anna was screaming. We took a few bites, boxed the food up and went home. Later, we enjoyed a football "feast" at Richard's parents house while we watched the OU/TX game. (Way to go Sooners!) So you see our days are not all good or all bad.
Love,
Marlo

Friday, October 5, 2007 10:57 PM CDT

We made it through a Friday without having to call the nurse! Anna actually had a pretty good day---for her. This morning one of our friends called and asked if she and her daughter could come see Anna. We hadn't seen this friend since Anna's birthday party and she doesn't read the website. I told her about being on hospice and that Anna probably wouldn't play, but that they were welcome to come. RIGHT before they got here Anna started screaming in pain. She continued to cry the entire time they were here. RIGHT after they left, she went to the bathroom and then was fine. I thought, "God, we only had one visitor today. Why did she have to hurt so bad while they were here?" Before my friend left, she hugged me and prayed for me with tears runnning down her cheeks. Maybe God let her see a little bit of Anna's pain and what we go through so that she would be burdened to pray for us. I have to think that He wanted her to see that, because Anna didn't scream for the rest of the day.

Thank you to everyone who continues to reach out to us.

Love,
Marlo

Thursday, October 4, 2007 8:20 PM CDT

I was overwhelmed by the reponse to my request for a copy of the classic film "An Extremely Goofy Movie". Some days I don't see anyone but Anna until the kids get home from school. (I know that's true for a lot of stay at home moms--not just me.) I love email and the guest book because it makes me feel connected to other people. To have strangers (and friends) offer to send me something I needed was just amazing. Thank you for being REAL PEOPLE out there! When I told the kids what had happened, Jacob immediately thought of things HE wanted that he thought I should post.
FYI---my kids do not read this website. I don't want to burden them with too much information. I am really trying to give them as normal a childhood with as many happy memories as possible.
Anna had a fever this morning while the nurse was here so she drew a culture as well as a CBC. We are puzzled as to why this fever comes and goes. Her counts are going back up and she is no longer neutropenic so we are thankful for that. Pray that tommorow will be a better day.
Love,
Marlo

Wednesday, October 3, 2007 12:17 AM CDT

Sometimes people comment on how strong I am. Well, I only let you see what I want you to see. The reality is, I just keep getting up in the morning. God is strong, I am not. I'm just breathing, and sometimes barely doing that.
Yesterday was a hard day. Anna wasn't doing well and I went to Mitchell's memorial service. It was a wonderful celebration of his life and his Savior. Although the service was inspiring, it was also draining emotionally and I don't think I had much in that "tank" anyway.
Today is much better. Anna woke up and helped me make some soup for dinner tonight. We had to do something because she wanted another chicken nacho salad from Taco Bueno and it was only 8:30am. Now she has her salad and I rented one of her favorite movies "An Extremely Goofy Movie". (If anyone has a copy we can have, I can stop renting it.) Yesterday she felt too sick to take her pills, but today she is taking them fine. Who knows what tomorrow will bring.....
Love,
Marlo

PS. Thank you to the Incredible Pizza Company. I emailed them and asked if we could get some of their macaroni and cheese for Anna. They not only gave us a pan of mac and cheese, but they also gave us a basket of hats, t-shirts, balloons, and toys and told us to call them with any other cravings Anna has. I'm trying to get her to ask for their bread pudding, but she's not going for that yet.

PS2. Phil Joel, former bass player for the Newsboys and one of our favorite Christian artists will be in concert October 14 at Covenant Community Church in Yukon. We met Phil and his family at Kamp this summer and we have been enjoying his music ever since. We are looking forward to seeing them again. Please join us!

THANK YOU!!!! Only hours after this was posted, I have copies of the Goofy movie coming from Georgia and Istanbul (and another offer from someone else in Georgia!) WOW!!!! I'll let you know if there is anything else we need :-)

Monday, October 1, 2007 4:53 PM CDT

Anna has had an okay day. She has a low fever that comes and goes, but her culture is negative so we are not starting antibiotics. Today she wanted to go ride her flying turtle on the driveway. I took her out there and she lasted for about one minute. Her spirit is willing, but her flesh is so weak. Thank you Stacy for coming over today so that I could get my hair cut, do laundry and run to Taco Bueno for a chicken nacho salad at Anna's request.
Check out the new picture of Anna and her cousin's puppy.
Love,
Marlo

Sunday, September 30, 2007 4:38 AM CDT

Tonight I am thankful for hospice. That's right hospice. I used to not be able to say that word without crying and getting sick to my stomach and now I am thankful for their service. We have been "eligible" for hospice since May, but have resisted "signing on". After we were discharged from the hospital the last time, we asked for hospice instead of just home health. My goal was to avoid the hospital as much as possible and to manage Anna's care at home. I am very glad we made that decision because they have kept us out of the ER the past two weekends.
On Friday Anna spiked a fever so the nurse came out and drew some labs at our request. Anna was wiggling so much that she had to poke her two times. After the first poke failed, the nurse was so sweet. We gave Anna some ativan to calm her down, and then all of us sat and watched the Pink Panther---and laughed. I was the one who finally said, "Let's go ahead and get this over with." I think Kelly would have watched the whole movie with us!
The labs showed that Anna is severely neutropenic, but the culture so far is negative so we are still at home. I haven't felt well for the past three days so I am thinking Anna may have picked up a virus from me. If that's the case, we will just try to keep her comfortable and hope that she can fight it off. We have stopped her chemo pill to help her counts go back up. So pray that they do.
Pray that we will have wisdom to know how much to treat Anna's symptoms at this point. We are trying to wait until after Oct. 11 and the MRI before we consider stopping treatment, but we may be forced to make decisions before then.
Love,
Marlo

PS. Thank you to Anna's "Secret Pal" for the gift you sent this week. We will use it as soon as we can.

Friday, September 28, 2007 8:33 AM CDT

"I, even I, am the one who comforts you." (Is 51:12)

Praise God who is the source of every mercy and the God who comforts us. (2 Cor 1:3) You may have read the words of Mitchell's dad yesterday and wondered HOW can he respond to his son's death in that way? Or HOW can Marlo continue to laugh when her daughter is dying? I have found during this time that God's grace IS sufficient for what I am going through. I do not have the grace that John and Tracy have for what they are going through because I do not need it in the same way today (just as you don't). God continues to meet us where we are and I can trust that his grace WILL BE sufficient for whatever happens to me.

Anna has been having "good days" which means she sits on the couch and eats all day. Every now and then we get her to go outside and sit on the swing or go for a walk in the stroller or play a game. We don't expect much or push her to do anything she doesn't feel like doing. She has episodes of pain, but they pass. We will do another MRI in two weeks to see what is going on inside. After that, we will reevaluate her treatment.

Love,
Marlo

PS. Thank you to everyone who supported the fundraiser for Anna's school. Now they are collecting BUY FOR LESS receipts. If you shop there, please save your receipts for Anna, Audra, and Will to take to school. I PROMISE I won't look at them to see if you are buying oreos and ice cream!

Thursday, September 27, 2007 9:09 AM CDT

I have fought the good fight, I have finished my course, I have kept the faith. (I Timothy 4:7)

Mitchell Whitaker died this morning. He was 10 years old. His father says "All is well." Pray for John and Tracy today. (gomitchgo.com)

Wednesday, September 26, 2007 8:04 AM CDT

Happy Birthday Will!
He was up before I was....bouncing around the house....so excited. We had his birthday breakfast and opened presents before 7am. We received two packages this week and I saved them for today so that everyone would have something to open. (Thank you Julianne and Erin!) Of course Anna missed it all because she is a night owl, not an early bird. There will be lots more celebrating today for her to be a part of. The one member of our family who won't be celebrating is the dog. She is getting her kidney stones removed today---bummer.
Even as we celebrate, our hearts are burdened for our friends the Whitakers. Why do we get another day with Anna when they are having to say goodbye to Mitchell? Why does one child get to "ring the bell" to mark the end of treatment, while another will never get to ring it? Life is just not fair---it never will be. But we can look forward to a time when there will be no more tears, no more dying, no more saying goodbye....hallelujah for that.
Love,
Marlo

Tuesday, September 25, 2007 8:05 AM CDT

We reached another milestone this morning. Anna washed her hands in the sink! I know that doesn't sound like a big deal to you, but for the last month she has said she was "too sick" to stand at the sink and she needed a wet-wipe to clean her hands. Hey, that's as exciting as it gets around here some days. Yesterday was a little exciting. I was trying to put together a lasagne but I kept getting interrupted. The nurse was trying to get a lab sample from Anna's finger and Anna wasn't cooperating. There was blood everywhere and the nurse called later and said the sample was no good and she will be back to do it again today. I haven't cleaned the stains from yesterday yet!
We had Will's birthday party Sunday (even though his "real" birthday is tomorrow). We played miniature golf and Will decided that the grand prize winner would get to take him home with them for 3 hours. Well, it turns out that we spent most of the time trying to keep little boys out of the water traps and so the scoring was not very accurate. I think that everyone who was there is a "winner" so let me know when you want to pick up your prize---for 3 hours.
Love,
Marlo

Sunday, September 23, 2007 9:41 PM CDT

What a treat I had tonight. I got to have dinner with Gracia and Oreta Burnham. Gracia and her husband Martin were kidnapped in the Philippines in 2001 and held captive for over a year. When they were finally rescued they were caught in the crossfire and Martin was killed. I had prayed for them while they were captive and then read Gracia's books about her experiences. Her church in Wichita has Anna on their prayer list so she had been praying for us. I couldn't go hear her speak this afternoon because of Will's birthday party so I was going to sneak into the dinner the church was having for her tonight. My friend Shelley told me that she was praying that I would get to sit "shoulder to shoulder" with Gracia at the dinner. Well, I didn't know how that would happen because I wasn't even supposed to go to the dinner because I wasn't a member of the church where she was speaking. I knew ONE person at that church and that person was a greeter. When I got there I found Jane and she said, "I have a seat saved for you." It was at the front table. There were four people on one side of the table and then four empty chairs. The chair Jane held out for me was in between two empty chairs. The man on the other side of the table said, "Are you sure you are supposed to sit there?" I said, "Believe me, I would never have been presumptuous(sp?) enough to sit here. I would have been sitting on the back row, but this is where I was told to sit." Pretty soon a man and his wife came and sat on one side of me and I found out they were Martin's parents. Then Gracia came in and I got to meet her. Every good and perfect gift comes from God and he is the one who enables us to enjoy them. I was so thankful to God for the opportunity to meet someone who is living out her husband's last words to "Serve the Lord with gladness." (Psalm 100) Whether you are hiking a jungle trail, speaking in front of hundreds of people, nursing a sick child... whatever you do, do it as to the Lord. It is the Lord Christ who you serve (and do it with gladness).
Love,
Marlo

PS. Anna has stopped throwing up and is doing better.

Saturday, September 22, 2007 1:54 PM CDT

What a difference a day makes.
Anna was doing so good yesterday that we took her to a friends house for a party. At about 7:30 she started throwing up and kept throwing up all night. The nurse came over at 2am to check on her and then had some medicine delivered from the pharmacy at 3:30am. She was finally able to sleep from 4:30-6:30. She hasn't thrown up yet today, but she hasn't pooped in a couple days so she is pretty miserable. She is just laying in bed with a throw-up bowl held to her face. Yuck.

As bad as it is, as tired as I am, Mitchell's parents have it worse. (gomitchgo.com) I am sad for both kids. Another mom signs all of her entries, "Come quickly Lord Jesus" and that is how I feel today.

In the middle of everything going on today, we had to take the dog to the vet and found out that she has kidney stones again. (This has happened before when we had a long hospital stay and she didn't get to go outside as much as she apparently needs.) Lord, did the the dog HAVE to have surgery NOW????

Marlo

PS. Happy Birthday POP!

Friday, September 21, 2007 8:13 AM CDT

Anna continues to surprise me. Last night I was in the kitchen and Audra and Will were helping me make a fruit salad. Anna was on the couch saying that she wanted to help too. I told her that I would bring the bowl into the living room for her to stir. The next thing I knew she was walking into the kitchen in her little walker the PT loaned us. (I had tried to get her to use it several times before and she had refused.) She walked more and sat up more yesterday than she has in a month.
When we brought her home from the hospital, we didn't know if she would be getting better or worse. It is so exciting to see her getting better! I really don't know how her little body keeps going. I know that each of her days was written in His book before one of them came to be (Ps 139). So we will continue on as the story of her life (and ours) unfolds---one page at a time.
Love,
Marlo

PS. Thank you to whoever bought the kids Kirkland T-shirts. They just mysteriously appeared in Will's backpack last week. The kids love them! Thanks!

Wednesday, September 19, 2007 9:58 PM CDT

Today was a better day. The social worker came and brought Berenstein Bear books and read to Anna for over an hour this morning. This afternoon she took her first bath in about a month (Anna, not the social worker). Tonight she wanted to go for a walk in the stroller to 7-11. Then we kept walking while she sat up and ate her popsicle. The bath and the walk outside were two things we haven't done in a long time. I am thankful for those things.
Love,
Marlo

Tuesday, September 18, 2007 9:53 PM CDT

"It is the Lord; let him do what seemeth him good." (1Sam 3:18)

The xray today showed much improvement, but evidently it was not all clear because we have another week of IV antibiotics. I WILL NOT complain because our friend Mitchell is fighting a fungal pneumonia and it is so much worse. (Trust me, no matter how bad you think things are, you can always find someone who is dealing with worse.) Mitchell's dad said something yesterday that I thought was SO GREÅT. I hope he won't mind me quoting him,

"I don't know why..........but I do know that He has called me to this very place, with this very child, in this very family, to proclaim HIM........and with His continued strength, and your continued prayers..........I shall not be found lacking."

I have met so many strong Christians who are going through the same thing we are going through. God continues to use them (and us) to glorify himself through suffering. I don't know all of the "whys". I've said before that I cannot understand. I can only trust. I am thankful for other Christians who are walking and have walked this road. "With God's help we will do mighty things." (Ps 60:12)

Love,
Marlo

Monday, September 17, 2007 8:32 PM CDT

A somewhat better day today--at least no more throwing up. Anna seems to be sleeping more and I don't know if that's good or bad. At least when she is asleep, she's not hurting. We go tomorrow for a chest xray to see if the pneumonia is gone. If her lungs are clear, we will be able to stop the IV antibiotics that we have been doing every eight hours for the past 3 weeks.

Funny story----Will's birthday is next week so I was asking him who he wanted to invite to his party. He mentioned several of his friends and then he said, "I know who would bring me a nice gift." I asked, "Who?" He answered, "Jason and Katie." (Jacob's Sunday school teachers who took the kids out to dinner and to play mini golf when Anna was in the hospital.) I said, "Why do you think they would bring a nice gift?" He said it was because when they took them to Souper Salad, they bought them SLUSHIES. Yes, Jason and Katie must be rolling in dough to be able to afford anything but WATER when they go out to eat!

Love,
Marlo

Monday, September 17, 2007 7:13 AM CDT

Please pray for our friend Mitchell. (www.gomitchgo) I thought we had a bad day yesterday, but his was 100 times worse. His mom is a friend of mine and Mitchell is always so sweet to Anna in the clinic.

Anna and I were throwing up all afternoon yesterday. She woke up at 2am and asked for bread and butter so hopefully that means her tummy has settled down. I am SO thankful for my husband who had to take care of all 5 of us yesterday---with a smile on his face. He even kept his promise to the other kids of "sundaes on Sunday". Way to go Dad!

Love,
Marlo

Saturday, September 15, 2007 3:03 PM CDT

New Pictures added 9/15

The Fair turned out to be just what Anna needed. Even up to last night I was telling people that we weren't going to go, but we did--and we are so glad we did! Anna sat on my lap (then Sittie's lap) and never once said she needed to lay down. She ate $10 cotton candy, nachos, and several other snacks I had packed. She couldn't wait for the show to start and then she didn't want it to be over. After the show she sat up in her stroller and ate roasted corn while we waited for the golf cart to come get us. When we got back to our car she got out of the golf cart BY HERSELF and WALKED to the car. This is the same kid who hasn't walked anywhere or sat up for longer than 10 minutes in at least 3 weeks. I told her I would take her to the fair everyday this week if she felt like going. She said she wants to go back and get more corn!
So many people helped make this day fun for our family. Thank you Debbie and Jill for the tickets, thank you Tim O'Toole for the parking pass and the golf cart rides and the "red carpet" treatment at the gate, thank you Bert for letting us take our stoller into the arena, thank you Nicolle for calling Disney on Ice and telling them where our seats were, thank you Disney on Ice for all of the souvenir toys, thank you Stacy for helping exchange our seats for even better ones, thank you Sittie and Pop for going with us to help (of course Sittie accidently poured snow cone in my purse, but other than that she was VERY
helpful : ) We had a GREAT, GREAT day.
Love,
Marlo

Thursday, September 13, 2007 3:39 PM CDT

"Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the violent storm has passed." (Psalm 57:1)

The storm rages on and I go from peace to despair---often several times a day. Yesterday was a wonderful respite. A friend came and stayed with Anna while I joined two other friends for lunch by the lake. The fresh air was so.....refreshing. Then last night we went to another friend's house for dinner. 14 people around the table makes for lively conversation. Anna was just as sick--she stayed on the couch except for when she was in my lap--but the fellowship was comforting.
Anna doesn't seem to be getting better or worse. I don't see how we will be able to go to the ice show this weekend. I think if I carried her in there, people would look at me like I was crazy to bring such a sick child. I don't really care what people think, but I don't want Anna to feel too sick to enjoy the show. It's still two nights away so maybe.........
Love,
Marlo

Tuesday, September 11, 2007 5:05 PM CDT

Anna is doing about the same and maybe a little better. She sat in my lap for quite a while at the clinic. I told her that if she is going to go see the Princesses on Ice this weekend that she has to be able to sit up. She had bread and butter at 3am and roast and carrots at 9am. We are going to try some Pediasure milkshakes later tonight (but don't tell her that or she won't drink it!)
We are enjoying some beautiful fall weather here in OK and hope you are too.
Love,
Marlo

Sunday, September 9, 2007 8:40 PM CDT

Thank you for praying for Anna to eat. She is eating whenever she is awake. We have to supply a constant stream of food. She usually has 3 or 4 things sitting in front of her at a time. Unfortunately she has diarrhea so everything she eats comes right back out. She is in a pretty good mood most of the time. She spends the day eating and watching Arthur and Berenstein Bears DVD's. She is very talkative which we have missed the last two weeks. She is still too weak to sit up or walk without help.
Thank you to our friends who took the other kids to do fun things this weekend. I hate having them confined to the house because of Anna. Also I want to thank those of you who have offered to bring meals. God continues to meet ALL of our needs.
Love,
Marlo

Saturday, September 8, 2007 5:39 PM CDT

Last night was terrible. Anna was moaning and gagging off and on all night so none of us got any sleep. This morning I pulled the NG tube myself since it seemed to be the source of her agony. (The home health nurse was going to come and do it, but Anna chose me instead. She has more faith in me than I do in myself.) She has been a lot more talkative today and has stopped throwing up. She is trying to eat, but so far it's not much. Her eyes are bigger than her stomach so she asks for everything (mexican stack, pizza, macaroni and cheese, wheat thins, cheez whiz, chocolate covered cherries, carrots and ranch dressing.......just to name a few we've heard today).
Pray that she will be able to eat and we won't have to consider replacing the tube. Pray that she will not get dehydrated. Pray that she will be able to sleep tonight.
Love,
Marlo

Friday, September 7, 2007 9:37 PM CDT

After arriving home to signs and a homecooked meal from our friends the Punjabis, things went downhill. Anna is very miserable and is making the rest of us miserable. She is finally asleep so things are quiet for a while. The home health nurse came over and totally overwhelmed us with information and instructions. I hope things are better after a good nights sleep. When Anna sleeps in our bed it's usually in the middle. Because of her pumps she is now on the edge, so I get to sleep in the middle. We'll see how that goes!
Goodnight (I hope),
Marlo

Friday, September 7, 2007 1:53 PM CDT

We have been cleared for take-off. That's what we've heard anyway, but we have yet to see the discharge papers. We will go home with another 10 days of IV antibiotics every 8 hours and a feeding tube that we will use for 12-18 hours a day. I'm not a nurse, but I play one at home!
When she feels good enough, I owe Anna a trip to Build-A-Bear. It's one of the things I promised when she was SO sick last week....maybe next week.
Thank you for praying for us.

Love,

Marlo

Thursday, September 6, 2007 7:44 PM CDT

"We live close to death, but here we are still alive...Our hearts ache, but we always have joy." (2Cor 6:9)

Well, the NG tube is still in. They are slowly increasing the volume to see how much she can tolerate. So far she hasn't thrown up again. She is also off the oxygen and breathing on her own. So her "vitals" look good, but her little spirit is broken---or at least shut down temporarily. She is not talking to us except for grunts (which fortunately I am pretty good at interpreting).
This is day 11 in the hospital. We were only in the hospital 12 days when she was first diagnosed and had her surgery. I am hoping we will go home this weekend. If we stay tomorrow night, Audra will get to spend the night with us. Audra has always been Anna's best therapy.
Love,
Marlo

Thursday, September 6, 2007 11:54 AM CDT

We put the NG tube in this morning. I still don't know if she is going to be able to tolerate it. She is still gagging and throwing up off and on (and they haven't even tried to put anything down it). I thought it was what was best for her, but now I'm not sure. Should we be putting her through this trauma?
Coach Stoops showed up in the middle of things. Anna was screaming. I was crying. Talk about bad timing! I had even gotten up early to make sure I was dressed since the last time he came I was in my pajamas. Oh well!
Pray that she will be able to tolerate the tube (or that I would know if we should take it out.) I was hoping to be able to put some weight on her, but that may not be possible.
Marlo

Wednesday, September 5, 2007 1:38 PM CDT

Today has been a better day for both of us. I was able to take a long walk this morning which really seems to help my attitude. Anna had 2 BM's last night which has helped her attitude. She ate breakfast, but then heard the doctors discussing an NG tube and now she is worried about that and can't eat. The plans are to switch to the NG tube sometime today. It will give her more nutrition and will be easier to manage at home. Her body is so malnourished that she needs LOTS of calories. She is down to 1/2 Liter of oxygen so we are hoping to wean her off that very soon.
Thank you for all of the encouraging notes.
Love,
Marlo

Tuesday, September 4, 2007 8:47 PM CDT

I know you are wondering why there hasn't been an update today. I have been too busy taking care of Anna and feeling sorry for myself to write. She has felt yucky all day, but finally started eating around 7pm and that seems to have helped (that and morphine). I've struggled with feeling "yucky" all day too. It is SO easy to get down when our "trials" go on and on. I have had to stop myself today and say, "Ok, there must be something you are thankful for. Start thinking!" I've found that is the best way to keep myself from spiraling down into a pit of self-pity. It's a constant struggle for me and the other parents up here.
Anna is down to 1 liter of oxygen (by nasal canula). Pray that her bowels will start moving. She won't sit up or get out of bed so that is not helping the situation. She says she wants visitors, but then she ignores them when they come. (Please forgive her.)
Thank you for continuing to check on us. Tomorrow is another day.....
Love,
Marlo

Monday, September 3, 2007 9:39 AM CDT

"God never abandons us. We get knocked down, but we get up again and keep going." (2Cor 4:9)

We had another good night. Anna slept well and we did too. Before she went to sleep she was VERY hungry. We were scurrying to find the things she was asking for. Our sweet nurse was nice enough to share her carrots and ranch dressing from her own dinner. This morning we have placed an order for cheese pizza. (She told us she didn't want breakfast, just lunch and dinner.) She doesn't eat more than a bite or two, but it's a start. Her body looks like it is starving---absolutely NO fat. But at least her lungs are working better again! She has gone from needing 15 liters of oxygen to 6. We are hoping to go down even more today (she is still using a mask).
Love,
Marlo

Sunday, September 2, 2007 9:10 AM CDT

We had a really good night last night (the first one this week when we didn't think Anna was dying!) Her breathing has improved quite a bit and we are hoping that she can transition back to a nasal canula today.
Thank you to everyone who visited yesterday. It was very encouraging. I've never talked to so many people in my pajamas! (In the hospital the nights are so busy, we like to sleep in as long as we can.)
Today I am thankful for a stretcher. I found one in an empty room yesterday and took a nap and then last night we wheeled it into our room so that Richard wouldn't have to sleep sitting up in a chair.
Thank you for praying.
Love,
Marlo

Saturday, September 1, 2007 11:51 AM CDT

Ladies, why do we have so many clothes in our closet that we don't wear? You know we have our favorites and the others just collect dust. This week I have had to wear whatever my WONDERFUL husband brings me and he just can't win. Yesterday I asked for my black pants and forgot that I have five pairs! So if you see me in dusty clothes you will know why :)
We have had scares the last couple of nights with Anna's breathing, but she seems to be feeling a little better today. She may have more energy because they finally started the TPN. She had to have a PICC line put in her arm, but of course things will go in, but they can't get blood to come out for labs. (I think you should just have cancer or just have pneumonia and NOT have to deal with all of these mechanical problems!)
So...we don't really know when or if Anna will leave the hospital. We have talked with the kids and they know what is going on. God knows the exact number of days Anna has and there is nothing we can do to change that number.
"Tho He slay me, yet will I trust Him."
Love,
Marlo

Friday, August 31, 2007 1:06 PM CDT

"For the life of every living thing is in his hand, and the breath of all humanity." (Job 12:10)

Once again our thoughts are focused on breathing--something we usually take for granted. Last night Anna had trouble keeping her oxygen level up, even with the help of the mask. We thought we were going to have to decide whether to intubate her or not. After a while (and some morphine) her numbers started to look better.
This morning she still requires a lot of 02, but she has been awake watching Sponge Bob. She told me, "It hurts when I laugh." I was just glad she was laughing (or trying to!) She also asked me who was going to come visit her today. That's the first time she has shown any interest in visitors this week. She has also asked for a couple of sips and bites, but it is hard to eat with a mask on your face. Hopefully she will be able to go back to using a nasal canula so that she can suck her fingers and eat again. They tried re-accessing her port this morning, but it's not working so we are waiting for them to put in a PICC line so that they can give her IV nutrition.
So you see there is a lot going on and we are all very tired. We are ready to take a nap, but the doctor is making rounds so we have to stay awake. Ughh!
Drained,
Marlo

Thursday, August 30, 2007 9:43 AM CDT

"My complaint today is still a bitter one, and I try hard not to groan aloud." (Job 23:2)

Isn't it amazing how as we read through the Bible we can find the exact words to express our feelings! What I am going through--the feelings I'm having--are not unique. Job suffered thousands of years ago. There are those of you who are reading this who have been where I am and KNOW EXACTLY what I am feeling. If you haven't been through this, you have been through something else--or you will someday.
The doctor told us on Tuesday that things may get worse before they get better, or they may not get better at all. Today we seem to be going through the "getting worse" stage and we just don't know if things will get better. Anna is having a hard time maintaining her oxygen level. She had to move from using a canula to using a mask (which is working for now, but she can't suck her fingers). Her port stopped working during this morning's lab draw so they had to start an IV in her foot. Those two things make her look sicker today than yesterday.
I'll try to keep you posted, but Anna doesn't let me get away for very long.
Love,
Marlo

Wednesday, August 29, 2007 10:03 PM CDT

"Human existence is as frail as a breath." (Ps 39:11)

I read that verse earlier this week as I watched Anna struggle for each breath. It's amazing when you think about how small a breath is and yet that is how frail we are.
We haven't seen a lot of improvement today. In fact she seems to be in more and more pain. Her pain and nausea are keeping her from sleeping for more than 20 minutes at a time. The nurse just gave her something for nausea so we are hoping that will help her rest.
Pray that we will find the source of her pain (I'm thinking it may be an ulcer caused by the Tylenol and steroids). Pray that Richard and I will get some sleep so that we can be better care givers.
Thank you to everyone who is helping with the other kids. I didn't even see them today, but they told me they were having fun.
Love,
Marlo

Tuesday, August 28, 2007 9:22 PM CDT

Thank you for praying for us. Today was a hard day, but it seems to be ending better than it began. Anna struggled to breathe all night then had her bronchioscope this morning. The doctor on call today was one of those that gives you the "worst case" scenerio. After she finished giving us "the talk" I was a basket case. Please forgive me if you were one of those who came to visit us during that time. Sometimes I just can't talk to anyone.
This afternoon they identified the type of pneumonia and have started the antibiotics and steroids and she seems to be responding well. I can see some improvement already, although she still feels crummy--it's not as bad as yesterday.
Tonight I had a surprise visit from some friends from Texas who were driving through town and SOMEHOW found the hospital and found us. Thank you Hutch and Shirley for making the effort and taking the time to come see me and meet Anna.
Love,
Marlo

Tuesday, August 28, 2007 1:58 PM CDT

Friends and Family,
We finished the scope this morning and are awaiting the results of the tests they will run on the specimens. We will begin to get a better picture of what is going on over the next 24-72 hours.

Anna isn't in any pain right now but breathing is very difficult. They are starting some medications this afternoon. We hope and pray that these medications will have their intended effect.

Ps. 41 says that: "The LORD will sustain him on his sickbed and restore him from his bed of illness." That's our prayer for Anna today - that the Lord would sustain her and restore her, yet again, from this bed of illness.

Thanks for praying.

Waiting for that miracle,
Richard

Monday, August 27, 2007 1:43 PM CDT

Thank you for praying that they would find the source of the pain and fever. They did a chest xray this morning and it looks like Anna has pneumonia. They will have to "scope" her to find out what kind and how to treat it. Pray that this will be able to be scheduled quickly so that we can start treatment. She is on oxygen right now and that seems to have made her more alert. She is still miserable and doesn't even want to be read to. I'm relieved that they found a cause and that they will be able to help her feel better soon. Of course I HATE being back in the hospital. I didn't even have the courage to ask how long we might be here.
I'm glad the kids are in school all day so all we will need help with is after school. Please let me know if your child needs a playmate this week.
Love,
Marlo

Monday, August 27, 2007 10:49 AM CDT

We are still trying to figure out what is going on with Anna. She woke up again in lots of pain and discomfort with a 103 fever. We took her to the clinic first thing this morning and they are giving her some fluids as well as taking some x-rays. Everything on paper looks okay so far but we can't find a reasonable explanation for the fever, pain, and lost appetite. This is something hidden that the Lord will need to reveal.

Still hoping for that miracle,
Richard

Sunday, August 26, 2007 11:13 AM CDT

Anna seems to be getting worse instead of better. She is in a lot of pain and no one can tell me what to do about it. All I can do is sit by her and rub her back. If Anna's AFP had gone up I would think this was caused by the cancer, but since it went down I have to think that this is something that can be fixed. I just wish I knew how.
Here's the song that I am listening to today....

in this land of the walking wounded
in this desert of countless sorrows
i will cling to his hand today and
fear not for tomorrow

in my heart i have made this promise
with this song i declare my choice
i will walk where the shepherd
leads and heed no other voice

in the chill of my darkest hour
i am saved from my deep despair
for the father who loves his
children hears my trusting prayer

in my soul there is one light shining
from the flame of my true belief
and its embers cannot be quenched
or robbed by any thief

in the end we are not forgotten
and our journey is not in vain
for the master who bought us here
will lead us home lead us home again

(Hymn by Randy Stonehill)

Saturday, August 25, 2007 2:19 PM CDT

Anna still feels miserable and no one know why. The cultures are negative. Her counts are going up so she is not neutropenic. Her AFP dropped again so we don't think the pain and fever are coming from tumor. We spent all afternoon yesterday waiting to see the GI doctor. He suggested trying zantac, but I haven't seen that it has made a difference. In my heart, I'm hoping that these symptoms are caused by tumor breakdown. I have nothing to support that, but because I don't know what is going on I can choose to think the best or the worst.
Pray that she will continue to drink enough to stay hydrated so we won't have to be hospitalized. Pray that she will start eating again. She says she is hungry but she can't eat. Pray for the fever to do it's work and then go away.
Love,
Marlo

Friday, August 24, 2007 8:49 AM CDT

Here's the song I listened to this morning on my walk.....

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth

(You Never Let Go, Redman)

Yesterday was hard and scary. But God was faithful and sent people to be with me off and on throughout the day so I wouldn't feel alone. Anna's temp got up to 103, but this morning she feels cool. (She's still asleep.) I had my bag packed for the hospital last night, but her counts came back above 500 and the doctor told us that we were doing all we could for her at home--so we stayed.
Thank you for praying for us. Thank you for Shelley, Kay, Arlene, and Jennifer who came to visit. Thank you for Big Sky bread which is all Anna has eaten in 24 hours (including a piece at 3am). Thank you for my wonderful husband who holds me together when I am falling apart. Thank you for the doctor who didn't make us go to the hospital. Thank you for the home health nurse who came to draw the labs. Thank you for the chance to walk by the lake this morning. Thank you that my kids love school. Thank you for Sittie and Pop babysitting tonight.
Wow! Once I get started being thankful it's hard to stop!
Lord, give me a grateful heart today and cast out this spirit of fear that does NOT come from you.
Amen,
Marlo

Thursday, August 23, 2007 2:43 PM CDT

I didn't make the meeting today. Anna was much worse this morning. She still hasn't eaten anything today. We are waiting for the home health nurse to come draw another culture. The one from Monday is still negative which doesn't explain the fever. We reduced her chemo in half yesterday to try to help her counts go back up. She has been neutropenic for a couple of weeks and her little body just can't fight this off---even with antibiotics apparently. So, I have spent a helpless day just sitting, watching, waiting. We would be doing the same thing in the hospital, but I would rather stay home. We have learned that things can change very quickly--either for better or for worse. We continue to hope that with rest, fluids, and medicine she will feel better. But always in the back of our minds is the knowledge that even if she feels better tomorrow, it's only temporary. That, my friends is a hard thing to live with. But it's not the worst thing.
Thank you to everyone who ordered things from Anna's school fundraiser. You all are just friends I haven't met yet. I think we have sold enough for all three kids to get to go to the Big Blast party. That was my goal. (They of course were hoping for the limo ride : )
Anna's awake so I better go try to get her to drink something.
Love,
Marlo

Wednesday, August 22, 2007 9:06 PM CDT

We have been tardy the last two days, but we made it to school. Anna has had REALLY bad mornings, but has been perking up around noon. (Thank you God for afternoon kindergarten.) She wants to go to school even though she is very tired. She sat in her jogging stroller today all snuggled up with her blanket, but she was in the circle and was answering questions. She even wanted her turn to go up to the front and put a clothespin on the chart. One thing she hasn't let go of yet is Baby. She begged me to get her out of the backpack today. "I NEED BABY!!!!" The other kids have been great so far. I haven't heard anyone tease her.
We have the IEP meeting tomorrow to make an official plan for Anna's educational goals. I have been to many of these meetings as an OT, but never as the parent. It will be a new experience for me.
Love,
Marlo

PS. Check out the new school pictures.

Tuesday, August 21, 2007 8:54 AM CDT

Another profound statement from Anna this morning.
She told me, "I like it sometimes when you cry, because it makes me think you know how bad it hurts."
Wow.
I try so hard to "be strong" for her and she feels better when I'm not.

She had a temp again this morning so school is probably out for today. I am SO glad we started back on the antibiotics already. Now I am just waiting for them to kick in.
It's kind of quiet around here today with everyone else back to school. You know yesterday I said that I was as excited as Jacob about him starting middle school. I realized at 6:30 this morning when he jumped out of bed and got in the shower without me even waking him up, that I was NOT. I hope he has a GREAT day.

Love (with tears),
Marlo

Monday, August 20, 2007 6:51 PM CDT

We were back at the clinic this afternoon for a repeat culture. We were supposed to go tomorrow, but Anna has been running a low grade fever off and on since Saturday so we went ahead and did it today. Our doctor put us back on the antibiotic for another 7 days. (So we only had ONE night off.) Luckily Anna took a bath this morning before they accessed her again. She was disappointed to miss school. Hopefully she will be back tomorrow. I have spent the last two years mostly confined to the house (or the hospital) so it has been fun for me to get to be up at the school too. It's been a long time since I had to think about what I was going to wear every day : ) Of course I don't think kindergartners really care do they?
Jacob is starting middle school tomorrow. I think I'm as excited as he is! My kids don't understand how I can have fun just watching them have fun. Of course the opposite is true and it HURTS when they hurt. You know what I mean.
Love,
Marlo

Since some of you have asked how you can support Anna in her school fundraiser I have that information. You can go to the following website
www.all4kidsinc.com/store/index.php
It will ask you for a sellers ID.
Anna's ID is krk3030
(Audra's is krk6366, and Will's is krk0454. I've included that info for Grammy and Sittie who will have to buy from all three!)
PLEASE don't feel like you have to order anything! I just wanted to get the information to those of you who asked.

Saturday, August 18, 2007 8:41 PM CDT

Anna woke up with a low grade fever this morning. I think it must be viral since she is on heavy duty antibiotics. It went away later in the day and she seems better now. She wasn't eating this morning so she is making up for lost time. I had to make CHILI for her afternoon snack! (She prefers "real" food to snack food.)
The school psychologist walked to our house today and did her testing in preparation for Anna's IEP meeting on Thursday. It turns out that she is our neighbor! Everyone in the special services department has been great so far. I hope Anna will be able to attend long enough to benefit from all that is being done for her. I couldn't help overhearing the testing. Anna appears to have a great vocabulary, but can't identify many letters at all. She is behind in several skill areas. We have been so focused on survival we forgot to teach her how to use scissors and draw a square. They should ask her about lab draws, GCSF, ports, red pills, blood pressure, steri strips, fluids, and child life specialists. She would ace that kind of test.
One more 2am dose of antibiotics tonight and then we will be able to sleep through the night again.
Love,
Marlo

Friday, August 17, 2007 4:07 PM CDT

We made it through the first week! Anna was very sick this morning, but perked up around noon. She was evaluated today by the nurse, the PT and the OT. It was all very informal. We will have our "official" meeting next week to set up her IEP.
She got to do the kitchen center today which is her favorite. She is still waiting to be the "chosen one" who gets to take the attendance to the office. We both enjoyed the kickoff for the school fundraiser. Jacob and Will were chosen as the "helpers" and led the school in dancing to the YMCA. They got the kids so hyped up. Anna now wants to sell 50 things so that she can ride in a limo. (I think it would be cheaper to rent a limo!)
Will received a special award from the principal today for being such a good student. His teacher said that Will is the best listener in the class. Good job Will!!! I've been so busy I forgot to miss him this week as he transitions to being at school all day. He is a great kid.
Love,
Marlo

Thursday, August 16, 2007 4:41 PM CDT

Anna almost made it through her first full day. She spent the last 30 minutes napping in the teacher's lounge. She seemed to enjoy everything, although she interacted more with me than with the other kids. She's just not used to playing with anyone besides her brother and sister and grown-ups. The thing that bothered her the most was a boy named Leslie. He didn't bother her. His name being "Leslie" bothered her. The only Leslie she knows is a girl.
The rest of the day was spent saying that her tummy hurts. We'll see what tomorrow holds!
Back to school,
Marlo

Wednesday, August 15, 2007 8:34 PM CDT

Anna was able to attend kindergarten orientation this afternoon and did great. We had a rough morning because her port had to be deaccessed and reaccessed. The home health nurse came by to do it and it was an ordeal. I'm sorry, but you should NOT have to do stuff like that on your first day of school!
At school Anna sat by a really cute little girl. She was very bubbly and talkative. Richard and I looked at each other and said, "Junie B. Jones!" At recess Anna was very concerned because someone did "something bad". When she came inside she told me that I had to tell Mrs. Reaves that someone picked something up off the ground. (Evidently that was breaking one of the rules the teacher had explained before they went outside. I wasn't paying attention, but Anna "the enforcer" was!)
She fell asleep as soon as she got home and spent most of the rest of the day on the couch. She has told me before that the thing that helps the most with her pain is distraction and I think she is right.
Love,
Marlo

Tuesday, August 14, 2007 9:48 PM CDT

We went to meet the teachers today at school. Anna walked more than she has all week at home. When we got to the stairs, I parked the stroller and was getting ready to carry her down when she stopped me. She wanted to walk by herself. She said, "I want to be 'big'." She loved her classroom and didn't want to leave the kitchen center when it was time to go. There are only 13 kids in her afternoon class--yea! We will meet them and their parents tomorrow and I will try to explain why their classmate doesn't have any hair.
Thank you Ally's house for all of the back to school supplies including a High School Musical t-shirt. Just what every kindergartner needs!
Love,
Marlo

Monday, August 13, 2007 4:31 PM CDT

Anna and I took a long nap when we got home. Hospitals are just not the place to rest. Two children reached the end of their "fight" on Saturday and I met the mom of a little boy who was recently diagnosed and just starting down this road. Its hard to understand, but I continue to trust that what is seen is temporary and what is unseen is eternal.
Anna requested stew for her welcome home meal. We read about stew in a Junie B. Jones book and Anna asked what it was. After I described it she said, "That sounds good. That's what I want." Never mind that it was 102 degrees outside! She has spent most of today on the couch so I'm wondering how she is going to function at school. We are happy to be home, but last night I was missing the nurse at 1am when it was time to hook up Anna's antibiotics. Only five more nights to go!
Love,
Marlo

Sunday, August 12, 2007 1:57 PM CDT

The girls are HOME! So that's good news. We'll continue the antibiotics with homehealth and hopefully start kindergarten on Wednesday. Anna's counts are still VERY low so she really needs to bounce back quickly.

I'm sure Marlo will update more later but for now, they are here with us and we are glad and thankful that the Lord has brought them back.

Richard

Saturday, August 11, 2007 1:09 PM CDT

We are still in the hospital. Evidently my breakdown in the hallway yesterday wasn't enough to change the mind of our "by the book" doctor. Today God told me to keep my mouth shut so I did and now we are supposed to go home tomorrow IF her second culture stays clear. Usually this is a ten day admission so I guess the doctor is comprimising his standard practice in letting us go home on IV antibiotics a week early. I have been spoiled by our regular oncologist who treats me as an equal team member and trusts me with Anna's care (and who is currently on vacation). I guess that level of trust has to be earned.
I came home with the kids last night for some R and R. We decided to go for a bike ride and I was a bad mom and let them ride with flip flops. Audra lost control and tore up her toe. There was blood everywhere and Audra does not suffer in silence. We had to walk home with her screaming the whole way. I got it cleaned up and her settled down and then the fun part started. She got out the stilts to use for crutches. Then she stretched out on the couch and started asking for things---water, popsicle, book, ice pack. She LOVED having a turn to "be sick" for a little while. So I nursed her until Sittie arrived to take her to the "land of milk and honey" (Sittie and Pop's house) where she will be wined and dined and spoiled for 24 hours.
Thank you to everyone who has helped with the kids the last few days. The hospital room is very COZY (ie. small) and there is no place for the kids to "hang out".
Love,
Marlo

PS. Anna's AFP is currently 156,000 which is incredibly high, BUT it's down from 193,000 two weeks ago. This means we will continue what we are doing as long as the AFP doesn't start rising.

Friday, August 10, 2007 12:37 AM CDT

Well, sometimes things don't always go as planned. We thought we would be going home today but two things happened -- first, Anna had a fever spike in the middle of the night last (that no one told us about) and second, the blood culture finally showed positive for some kind of infection. The inpatient oncologist has turned a deaf ear to our pleas to go home and do antibiotics on home health. Everything else is about the same today but we just have to wait until he will agree to release us to home health.

We are praying that:
1. Her fever will not return;
2. The antibiotics will do their job and kill off the infection.
3. We could make a persuasive case to the inpatient oncologist to release us to home health. I don't think this oncologist really knows Anna's history or how good Marlo is at caring for Anna. He told Marlo that it would just be "a few days" more in the hospital and it wasn't a "big deal." But when you are living day to day, EVERY day is a BIG deal. We really want to do what is best for Anna and beat this infection (especially since her AFP has improved, we feel like we're still in the game). But we also think that all else being equal, the best thing for Anna is to be at HOME.

In any event, weekends at the hospital are pretty boring. So if you are in the neighborhood and are so inclined, please drop on by! (but not if you have a cold or the sniffles or someone in your family does).

Thanks for checking back in as we ride this rollercoaster another time around.

Richard

Friday, August 10, 2007 7:24 AM CDT

Well, some good news! Anna had a good evening last night, enjoying visits from her Sittie and Pop and her siblings. Her appetite seemed to be coming back some, which is good. We played hide and seek (which is very difficult in a small hospital room while you're hooked up to a 6 foot IV pole) and read Junie B. Jones. Her white counts were going up, which was good, her fever had come down, which was good, her AFP is coming down, which is VERY good, and so far no signs of a port infection. If all stays stable, we will push hard to come home today...so the Lord has been good to us and we're looking forward to a weekend at home together.

Grace,
Richard

Thursday, August 9, 2007 9:29 AM CDT

It's Thursday morning. We did make it to the hospital last night and were admitted for fever neutropenia. It was not very pleasant. We hadn't made that "midnight run" for a while (for which we were thankful). On the plus side this morning, Anna's counts are going up and her fever is going down. Our goal is to get out of the hospital as quickly as possible and finish the antibiotics on home health.

We are also waiting on the results of an AFP from Tuesday. Because her number is higher than OU's lab can measure, it is done as a "send out" test, meaning it takes a few days longer to get it back. The last number we have, which was 2 weeks before family camp, was VERY high. We're hopeful that this number will either be much lower or the same, which would indicate that the drugs she's on are having some effect on the cancer.

She is officially enrolled in Kirkland for the fall and we're hoping she can start next Wednesday, but who knows? A week might as well be a year when you're living day to day. We're just glad we've come this far.

Today, we're asking the Lord for:
1. No fever
2. No infection
3. Low AFP
4. Strength, health, and healing for Anna
5. Get out of the hospital!

Thanks for checking in.
Richard

Wednesday, August 8, 2007 11:04 PM CDT

Anna has not felt very good today and now her temp is 102.2 so we are headed to the hospital to be admitted because she is neutropenic.
M

Monday, August 6, 2007 2:15 PM CDT

Well, things seem to have settled back down here. Anna and Audra are both feeling better. Some of you moms will understand how glad I was that Audra was sick. For those of you who don't understand; whenever you take your child to the ER they always ask, "Is anyone else in the family sick?" If there IS someone else who is sick, then the chances are greater that your child with cancer has what the other person has and is not suffering from "disease progression". So far the cultures are clear so we get to stay home until our regularly scheduled appointment tomorrow.
Besides the girls feeling better, today has been a great day in other ways. I got my new oven this morning (our old one blew up a few weeks ago), and my friend Stacy came and dropped off some food and took my boys to her house. How nice is that! (She has five boys of her own so she deserves an award or something.)
I asked Anna what she wanted for dinner now that we had an oven and she said, "Mexican Stack". Of course we just had that and we don't need an oven to make it, but I had to ask! I think I'll bake some cookies for dessert just because I can...
Love,
Marlo

Sunday, August 5, 2007 3:12 PM CDT

We are home for now. Anna was not neutropenic so we didn't have to be admitted. They gave her some IV antibiotics and we will wait to see if the blood culture turns positive. She still feels pretty bad and hasn't eaten anything today. Audra doesn't feel great either so maybe they have the same thing, but it is harder on Anna because she is immunocompromised. Thanks for praying for us. We are thankful to be back home.
Love,
Marlo

PS. This afternoon Anna asked me, "Why is God taking so long to make me feel better?"
How would you like to answer that one.

Saturday, August 4, 2007 9:19 PM CDT

Update Sunday 8:30am---Anna's fever is back higher than before so we are headed to the ER for labs. She does NOT want to go.

We had a busy day at the mall. Daddy and the kids enjoyed a movie sponsored by OCCA while I enjoyed a facial (Richard thinks I got the better end of that deal). Then Anna spent the afternoon with Sittie while the rest of us did our back to school shopping. It was Oklahoma's first tax free weekend so EVERYONE was at the mall. We got it all done though and saved our 8 percent. When we picked Anna up, she had a fever and she was very uncomfortable. She did this one night at camp (in addition to the night before we left for camp). We're not sure what is causing these fevers, but we are thankful that they seem to go back down fairly quickly. She had a rough night last night so we are hoping for a better one tonight.
Love,
Marlo

Friday, August 3, 2007 7:35 AM CDT

Funny story (2:30pm)---I called the director of special services to find out what I need to do to get Anna qualified for special ed so that she can get the help she needs at school. He said that the school may want to do some academic testing to determine placement. I said, "Great! Anna has been talking about wanting to skip a grade!"

We are slowly getting back to normal after vacation. It's always hard to come back to the "real" world. Anna spent the first day back on the couch, but wanted to go to a friends house yesterday. Hopefully she was just worn out after a week of excitement.
I have spent the last couple of days preparing to enroll her in school. I honestly never thought she would go, so I hadn't thought about any of the logistics involved. We have to get a letter from the doctor, talk to special services, and even find a way to get her around the school that is more "age appropriate" than her stroller. I don't know if she will be able to go a day, a week, or a month (a year?????) but we are glad she is getting to have this experience. And we are thankful for Mrs. Reaves who loves Anna and is excited to have her in her class.
Love,
Marlo

Tuesday, July 31, 2007 7:57 PM CDT

Evidently you can be a blessing to others just by showing up. That's what we did this week at camp--we just showed up. We didn't get asked to give our testimony. Nobody read my journal. We were just there trying to make the most of our time and yet several people came up to us and told us how our presence had blessed them. Wow! Why? Are we super saints? NO! We are just servants doing our best to trust God day by day.
One of our new friends told me that if she were in my shoes, she would want to hide away. If you've read this journal from the beginning, you will know that that is my natural first response. But we can't live that way. There came a time when we had to stop waiting for this trial to be over so that we could "get on" with our lives. This is our life! It amazes me--and I think it's what amazes others--that even on a road full of suffering there is joy and peace and laughter. Praise God for that!
Thank you to all of our new friends from K-Kauai.
They had a special prayer time for us after breakfast this morning. It was very sweet and very encouraging. I started crying when I was telling the director goodbye. I told him, "I even got to read a book by the pool!" For some reason that was a BIG deal to me. (It was a lot better than being hit in the face with a pie by Jacob---another story.)
Aloha,
Marlo

Sunday, July 29, 2007 12:57 AM CDT

Anna continues to enjoy camp with her new friends. Today at lunch it was so fun to see her eating upstairs--without me! In case you haven't figured it out, Anna's friends are some of the college-age staffers here. I am so thankful that she feels comfortable with them because they are so much fun. Last night was "Date night". Richard and I had dinner with the other parents and then we walked around Branson Landing until 10pm. When I went to get Anna, she wasn't ready to go! Audra has found a special friend too, so I am thankful for the extra attention she is getting as well. We are all "soaking in" the TLC from the staff and other families.
Thank you for praying for us.
Love,
Marlo

Friday, July 27, 2007 12:49 AM CDT

Aloha from K-Kaua'i! I haven't written--not because we are in the hospital, but because we are busy having fun. We are enjoying all of the camp activities--luau, boating, swimming, miniature golf, monster golf---and the speaker Gary Smalley. We are also enjoying the music by Phil Joel from the Newsboys, who is just happens to be here on vacation with his family. Anna has a special friend named Erica who she has spent a lot of time with. All of the staff has been great to make sure all of our needs are met. Pray that Anna's strength will hold out. She is needing a couple of naps a day. Right now she is resting up for Silver Dollar City. Her favorite things so far are the skits and Erica. The other kids loved the zip line. Praise God that we are able to be here for them (and the marriage talks haven't been bad for us either!)
Aloha,
Marlo

Wednesday, July 25, 2007 9:08 AM CDT

"Can anything ever separate us from Christ's love? Does it mean he no longer loves us if we have trouble...or threatened with death?....No despite all these things, overwhelming victory is our through Christ, who loved us. And I am convinced that nothing can ever separate us from his love. Death can't, and life can't....Our fears for today, our worries about tomorrow...can't keep God's love away." (Romans 8: 35,37-38)

Anna's temperature is back down to normal. We are hoping that last night was one of those unexplained chemo fevers and not a port infection. Thank you for praying and keeping watch with us.

Love,
Marlo

Tuesday, July 24, 2007 7:37 PM CDT

Update 10pm---Anna's fever has gone down to 99. We will continue to monitor it through the night. Thanks for praying.

Update 8:30pm--Anna has a fever of 100.8. Pray that it will go down.

We went to the clinic today and Anna's counts were good. (That doesn't mean her cancer number. It just means her AGC was over 1,000 so she can fight off infection and she doesn't have to be hospitalized if she gets a fever.) That shows that her body has adjusted to the continuous low dose of chemo and is making white blood cells the way it is supposed to. They sent out her AFP to another lab so we can get an accurate measurement. Right now all we know is that it is greater than 36,000 (normal is under 10). Her doctor wants to do an MRI in 3 weeks to see what is going on. We really have no idea if this treatment is doing anything or not. I feel like it is helping since she is still alive, but the doctor wants to measure the tumors and compare them to the previous MRI. I hate to put her through anything that's unnecessary, but right now I am agreeing to do it.
Anna is having trouble walking and wants to be carried everywhere. This could be neuropathy caused by the Thalidomide. The pain is treatable, but would involve drinking medicine three times a day. (Anna only takes pills. She HATES drinking meds.) We are supposed to be increasing her Thalidomide dose every week, but we are hesitant to do so because of the walking issue. Pray that we would do the right thing.
Praise God that Anna is still eating and drinking all the time. It is tiring to cater to her cravings, but it is better than the alternative (not eating). She has been able to maintain her weight even though the food goes right through her. She has even grown an inch in the last 6 months! When we went to Disneyworld she wasn't tall enough for the 38 inch rides and now we are going to Silver Dollar City and she is 39 inches tall!
Love,
Marlo

Monday, July 23, 2007 12:34 AM CDT

Anna has had a great weekend--we all did. The older kids enjoyed time in Wichita with my family. They especially liked going boating with Uncle Marc. Anna enjoyed some time here in OKC with Richard's parents and Richard and I enjoyed some time with each other.
Friday night we hosted a dinner party for a friend's birthday. We used to love having people over, but haven't done much of that for a couple of years because of Anna. I was having fun getting everything ready. I asked Richard if he would help by cleaning up the back yard. I just meant for him to pick up the toys and sweep the patio. Instead he worked for hours cleaning, spraying for mosquitos, and making everything perfect. During one of his trips to Home Depot he saw something that said, "NEW, Organic Lawn Food". Well, since cancer entered our lives, Richard has tried to reduce the amount of chemicals in our home. He thought he would get a couple of bags and put it on the yard on Saturday while the kids were gone. He did notice that there were a lot of flies buzzing around at the store, but the bag said, "No unpleasant odor. Safe to walk on." When he was unloading it, one of the bags ripped open so he thought he better go ahead and put it on the yard. (This was Thursday night.) It didn't take long for him to figure out that "Organic Lawn Food" was really just pelletized cow manure. He was too far into the job to stop so he kept going. The smell was REALLY bad and he thought "It's the night before Marlo's big party, and I've just put cow manure all over the yard!" Of course I was inside and didn't know about any of this. I found out about it the next morning at 5 am when the dog started throwing up (evidently "safe for pets" doesn't mean it won't make them throw up if they eat it). After the third time, I told Richard, "You know, what you did really wasn't very helpful." Lucky for us, the party turned out great and our guests only admired the yard from the windows.
Richard is so good about finding spiritual applications in things that happen to us. He said the "Organic Lawn Food" is like sin. No matter how you try to dress it up, change the name, call it something "New!", it is what it is and it still stinks.
Love,
Marlo

Sunday, July 22, 2007 9:19 PM CDT

The Will of God will never take you
Where the Grace of God cannot keep you; Where the Arms of God cannot support you; Where the Riches of God cannot supply your needs; Where the Power of God cannot endow you.

The Will of God will never take you
Where the Spirit of God cannot work through you; Where the Wisdom of God cannot teach you; Where the Army of God cannot protect you; Where the Hands of God cannot mold you.

The Will of God will never take you
Where the Love of God cannot enfold you; Where the Mercies of God cannot sustain you; Where the Peace of God cannot calm your fears; Where the Authorities of God cannot overrule you.

The Will of God will never take you
Where the Comfort of God cannot dry your tears; Where the Miracles of God cannot feed you; Where the Omnipresence of God cannot find you.

(Author unknown)

Friday, July 20, 2007 1:34 PM CDT

*Would anyone out there enjoy having a furry houseguest for a few days? Just trying to arrange Asta's vacation while we're gone.

I just wanted to share another funny story before I forget it. On Wednesday Richard took the kids to the swim meet. He put on his suit so that he could swim with them between races. Our little friend Ben noticed Richard's scar from the transplant surgery and asked what it was. Richard told him that was where they took part of his liver out and gave it to Anna. Ben looked at him and then said, "Did you know they were going to do that?"
Have a great weekend!
Love,
Marlo

Thursday, July 19, 2007 10:19 PM CDT

We have had a good day with Aunt Shonda and Grammy. Anna alternates between feeling really sick and feeling okay. She had a great time in the pool with Shonda this afternoon. Then tonight we had a rousing game of charades (her choice). Anna went first. She bent at the waist and put her hands on the ground---that was it. We guessed and guessed, but couldn't get it. Finally she had to tell us that she was a footstool. Go figure. Later she was a piano key. We didn't guess that one either.
Love,
Marlo

Wednesday, July 18, 2007 5:47 PM CDT

Anna and I are staying home from a swim meet right now. She had another bad headache, but seems to be doing better now. We continue to hope and plan for our trip next week. Richard talked to the camp director today to give him a "heads up" that we were coming and would have some special needs.

I have a helpful hint to share with you moms out there. This idea did not originate with me, but I tried it and it works. If you live in Kansas, Oklahoma, or Texas you are probably dealing with mosquitos after the flooding. Anna doesn't really like getting sprayed with OFF and I especially hate to spray her head. The other night we rubbed a dryer sheet all over her, including her little bald head, and she didn't get one bite. (I feel like Heloise giving helpful hints!)

I do have another more "spiritual" hint. It comes from Psalm 100:3-4
"Acknowledge that the Lord is God!
He made us, and we are his.....
Give thanks to him and bless his name."
When I am walking I substitute the names of family and friends and turn it into a prayer.
"You are God. You made Anna and she is yours. Thank you and bless your name."
I just keep saying it over and over with whoever comes to my mind. It doesn't keep the mosquitos away, but it does remind me who is in control.

Love,
Marlo

Sunday, July 15, 2007 10:01 PM CDT

This morning Anna said, "I'm never going to stop hurting!" I explained that she may never be free from pain on this earth, but that in heaven she would get a new body that wouldn't hurt. Then I told her that Paul went to live with Jesus yesterday. (I had showed her his picture on their website last week and told her he would be going to live with Jesus soon.) We talked about how he must be running and playing right now. She seemed okay with everything.

She had two new ideas today that involved candy. (We went to a WONDERFUL 21st birthday party last night and the kids came home loaded with candy.)
Her first idea was that the offering plates at church should be full of candy. Then when people put money in, they can take a piece of candy out. I thought that was a good idea.
Her other idea was for a restaurant. It was prompted by me telling her she had to wear her shoes to go out to eat. At her restaurant instead of "No shoes, no shirt, no service", the sign would say, "No shoes allowed". There would be candy while you waited and everyone would get a cake even if it wasn't their birthday and she would serve chicken, corn, and spaghetti.

Anna may have liked the candy from the party last night, but my favorite part was running barefoot through the grass spraying silly string. It was GREAT!!!!! Thank you Jennifer for the fun silly string war. (Picture 18 kids vs. 18 grown ups--- but when we were running around crazy everyone looked like kids!)
God blesses us with joy and laughter even in the midst of pain and I am SO THANKFUL!!!!
Love,
Marlo

Saturday, July 14, 2007 8:36 AM CDT

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away......'I am making all things new!'" (Rev 21:4-5)

Please join us in praying for our friends Terrill and Leigh who said goodbye (on this earth) to their son Paul this morning. Praise God that there is no more pain for Paul. Pray for God to lift Terrill and Leigh out of the slimy pit, out of the mud and mire and give them a firm place to stand. He WILL put a new song in their mouth. Many will see and fear and put their trust in the Lord. (Ps 40)

www.saxonreport.blogspot.com

Friday, July 13, 2007 8:54 AM CDT

"May your gracious Spirit lead me forward on a firm footing." (Ps 143:10)

We have been having a normal week for us. It's always good mixed with bad--never all one or the other. We had a GREAT day at the Cowby Museum on Wednesday thanks to our friends Sid and Marybeth. (See new pics) You can tell everyone had a fun day. Later that afternoon we were at a swim meet when Anna started screaming that her head hurt. I rushed her home to try and make her comfortable--all the while thinking, "Is this it? Is she having a brain aneurysm? Do I need to take her to the hospital? We don't have hospice set up yet!" After several glasses of water and some rest on the couch, the headache went away. The next morning Anna was on the couch saying she was sick, "But it's my usual hurting, not like yesterdays hurting." So she's pretty much always hurting. If there's something she wants to do she says, "I'm going to go, no matter how sick I am!" And she does.
We have more swimming planned for today and tomorrow, so we are hoping the rain will stop. We also have a vacation planned in a couple of weeks. When we made the reservations 7 months ago we had to tell them we weren't sure how many kids we would have. Can you imagine saying something like that?! We are still hoping we will be able to go. I can remember asking God for Disneyworld, then Thanksgiving, then Christmas, then her birthday....it's never enough is it? So I will be thankful for what we have had and what we have today.
Love,
Marlo

Tuesday, July 10, 2007 10:53 AM CDT

Kids can be great for your self-esteem---or not. This morning I was feeling cute and stylish in my new lime green skirt---until Audra woke up. She said, "Where did you get that?" I told her, thinking that she was admiring my style. Then she said, "It looks like you got it at the Children's Place. It looks like a kids skirt in a grown-up size." Ah, the truth from a child.... I told her that I got it for her, but that I would keep it until she grew into it.

I've always heard that "You can't out-give God." I know it's true because any good deed I have done in the past has been repaid a 100 times over during the last two years. I saw this principle in a different way on Sunday. Anna was in church with the little suitcase she carries around. It contains all of her "treasures" including a dollar bill someone sent her in a card. During the offering Sunday I saw her take her dollar bill and put it in the offering plate. I was so proud of her--thinking how she gave all she had to Jesus. Later when she scooted down the row to crawl onto my lap, I told her what a nice thing she had done by giving her dollar. She said, "Yeah, Sittie said she would give me more money later." So I guess in our family at least, you can't outgive God or Sittie!

Love,
Marlo

Monday, July 9, 2007 7:57 AM CDT

Can anyone help me out here?
Anna asked a question last night that I'm not prepared to answer. Maybe someone has studied this in seminary and can let me know.
"How can Satan see us if he can't drive a car?"

This is my song for today....

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

Love,
Marlo

Friday, July 6, 2007 11:17 AM CDT

Funny Story! This morning the city workers turned off the main water line down the street. When they turned it back on, the bathroom sink kept running. I decided to be "handy" and turn the water off under the sink. Well, that knob broke off in my hand and I had water going everywhere. I started grabbing towels and yelling, "Bring me a pan! Bring me the phone!" Will showed up first---with a PEN! I said, "That's not going to really help me."
"A PAN, a PAN, I need a PAN!" So Jacob shows up next----with a FRYING pan.
"I need BIGGER!" We finally got a big pan; Pop showed up and turned of the main water supply; and the plumber came right away. Yea!

Anna continues to do well. We enjoyed a "girls night" at a friends house last night while the boys went the the ball game. She and Audra are in their room right now playing ponies, kitties, or orphans (their current favorite games).
Smile,
Marlo

PS>Thank you to Ms Virginia who gave us some of her homemade plum jam. Anna ate it for breakfast this morning.

PS2>When you can...laugh.

Thursday, July 5, 2007 11:32 AM CDT

Wow! What a great day!
The boys started the morning with a fishing trip. They caught 17 fish. Now that's my kind of fishing!
In the afternoon we went to our friends house and swam in their hot tub. Anna loved it and is already asking to go back tomorrow. I said we would have to be invited--hint hint.
In the evening, we traveled to a small lake outside the city and discovered the Independence Day mecca of Oklahoma. We took part in a very small boat parade and came in second. (On the way home Anna said, "Second place is better than last place. And last place is better than no place.") The funny thing is, there were only two boats in the parade! We had fun shooting our pop guns, waving our flags, and waving at the people on the shore. (See the new pics) After the parade the big kids swam in the lake until it got dark. When the sun went down, the REAL fireworks began. We sat on the dock with our feet in the water and watched them. Then we went back to the house and set off our own. I have never seen or heard so many fireworks in one night. It's amazing what you can do outside the city limits! We didn't get home until almost midnight. As soon as we pulled in the driveway, Anna said, "I want my bedtime snack." I told her "GO TO BED!"
Thanks to our friends for a memorable day!
Love,
Marlo

Tuesday, July 3, 2007 2:33 PM CDT

"No good thing will the Lord withhold from those who do what is right." (Psalm 84:11)

That is the verse that Elisabeth Elliot meditated on while she waited 5 years for God to say "Yes" to her union with Jim. Then they lived happily ever after, right? Because that would be a "good thing", right? Wrong. Three years later Jim was killed by the very people he was trying to help. Wait a minute! The verse says "No good thing will the Lord withhold..." That doesn't sound very good does it. But what if God hadn't let her marry Jim? Who would have told his story? Who would have carried on his work with the Auca's? God gave her everything she needed for life and godliness. He gave her the strength to take her baby daughter back into the jungle to live with the same people who killed her husband. He gave her love for those people that could never have come from her own heart. He gave her the gift of writing and he gave her godly wisdom so that she continues to bless others with her words. Did she get everything she wanted? Did she have an easy life? (Her second husband died of cancer. Was that "good"?) Gods ways are higher than my ways and we may disagree on what we consider "good", but I know that He has my eternity in his heart and not just my present happiness so I will trust him---even if I don't like my circumstances. He will give me everything I need and will not withhold any good thing.

Today we were going home after the patriotic party at the clinic. (Thank you Kay, Skip, Arlene, Dona, Debbie, Southwest Airlines and the other volunteers for a fun time.) The Chicken Little music was playing. The kids were talking about fireworks and what a "chicken firework" actually could or could not do (we're still not sure.) When Anna said, "Mom, who knows... Jesus maybe better at playing than Dad.....You never know 'til you get there." (I know those were her exact words because I wrote them on a scrap of paper at the next light.) Where does she come up with these things? What does she think about? I told her that Jesus probably does play even better than Dad. (Thank you Father for preparing my baby and taking away her fear of her heavenly Father.)

Love,
Marlo
PS. Happy Fourth of July! Today is only the 3rd, but at lunch Anna prayed, "Thank you for the fun day we are going to have tomorrow." Hope your day is as fun as ours!

Monday, July 2, 2007 1:13 PM CDT

The kids are downstairs doing karaoke with Addie and Emily. They are spending the day with us before they go off to camp. Can you imagine two teenage girls wanting to spend the day with us? They did a fashion show earlier this morning. We are so thankful for their friendship!
We are also thankful for strawberry jam. Nurse Nan sent us some of her homemade jam and Anna loves it! She ate 4 pieces of toast this morning and informed me that Nan's jelly is better than ours.
Yesterday Anna and I were promoted to the kindergarten Sunday school class. I was glad she felt like going. The kids in her age group are great. They accept Anna the way she is and are always glad to see her. Her new teacher is actually a nurse at the clinic. She works with the kids with blood disorders so she never has to do anything to Anna, but we get to see her often.
Now I can hear they have switched to doing American Idol downstairs. I'm sure I am missing out on quite a show.
Funny story----Yesterday on the way to church Will asked, "Dad, how come the sign says 60 and you are going a little more than 60?" BUSTED!
Love,
Marlo

Saturday, June 30, 2007 10:34 PM CDT

Anna continues to grieve the loss of her hair. She keeps saying, "It's not fair that I'm the only one in our family to lose their hair!" I'm telling you, it makes me want to shave my head. Can any of you other "cancer moms" speak to this issue?
We took the kids to see a movie this afternoon. (After 18 straight days of rain, what else is there to do?) Everyone had a good time, but Anna had a hard time getting comfortable. Her little body looks so distended. I can only imagine how it must feel.
We are looking forward to celebrating the 4th of July this week. Pray that Anna will be able to enjoy the time with friends.
Love,
Marlo

Saturday, June 30, 2007 9:18 AM CDT

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

(Blessed Be You Name, Matt Redman)

Friday, June 29, 2007 3:34 AM CDT

Anna had a pretty good day. My favorite part was listening to her and Will play while I was fixing dinner. They were covering each other up with pillows. They hadn't played together like that for quite a while because Anna is too weak.
She noticed her hair falling out this morning. By this evening, she was pulling it out by the handful. She was laughing then, but when she was getting ready for bed she looked in mirror and got very sad. "I don't want my hair to fall out!" All I could do was hold her and tell her how pretty she was--with or without hair. This is the third time this has happened and it is still hard. Luckily, I know that once it's gone, these feelings go too, and we adjust to the new look once again. My consolation is that maybe the chemo is killing the cancer cells as well as the hair cells.
Funny story---We had a new friend over for dinner (who ended up staying with Anna while the rest of us went bowling--thanks Jennifer!). I fixed Will's favorite spaghetti and Anna threw a big fit about how she hated it. She pushed her plate away and said, "Yuck!" After a little "talking to" she came back to the table. She sat there for a while and reminded us once again how much she didn't like spaghetti, and then she ate THREE helpings. I think I may be the one pulling my hair out one of these days!
Another funny---My cell phone rang while we were bowling so of course I thought something was wrong. It was Anna asking me where the "Shake your tail feathers" CD was because Jennifer was the ONLY one who hadn't seen her performance. Then later she called again to ask me where the leftover Mexican Stack dinner was (her new favorite).
Love,
Marlo

Wednesday, June 27, 2007 9:33 PM CDT

A better day today.
It started out with Anna crying in pain, but ended with her riding her bike around the block. One of her meds causes "excess gas in the GI tract" so I think that is where her pain is coming from. (I'd rather think that than blame it on tumor anyway.)
My mood was helped by Anna feeling bettter and by lunch with a friend. Anna was with us. She had her own lunch of course, but when a piece of chicken fell out of my friends sandwich, Anna said, "Are you going to eat that?" Later she was blowing ice cream across the table with her straw saying, "Fire in the hole!" It's really hard to have a conversation with that going on, but we managed.
Love,
M

Tuesday, June 26, 2007 9:28 PM CDT

Some days are easier than others.
Today was not as good as yesterday, but the Lord's mercies are new every morning so tomorrow is another day. You know I try to focus on the good and on what Anna can do--not what she can't. I usually am able to keep from comparing her to other five year olds. Today she was in the kitchen and said, "Look Mom. Look what I can do!" I turned to see her hanging on the refrigerator door and pulling it open. I said, "Is that what you wanted me to see? That you could open the refrigerator door?" She smiled and said, "Yes!" I don't know why that made me so sad, but it did. Then I started seeing other things she can't do. Did you know that she can't step on or off the curb without help? Her legs aren't strong enough.
We had promised the kids we would take them to Incredible Pizza tonight and then we went to the clinic and found out that Anna is neutropenic (low counts). We went ahead with our plans because we didn't know if that would be the last time she would be able to go. She had fun until she ate too much and started screaming that her tummy hurt. (I ate too much too, but I didn't scream.)
So am I down because of those things? because my car needed a new battery? because a little girl in Texas died? or because I noticed Anna's hair falling out again? I don't know, but I do know where my help comes from. So I will run to Him once again.
Love,
Marlo

Monday, June 25, 2007 3:11 PM CDT

I realize I write a lot about food, but I hear "I'm hungry" about 100 times a day. Today Anna's future kindergarten teacher (Lord willing) and her husband came to stay with her while I went to the store. When I got home, Mr. Reaves was gone. I knew right away what happened. I asked Anna, "Where did you make him go for food?" She said, "Taco Bell". Now let me tell you, we are definately a Taco Bueno family. I said, "You've never even been to Taco Bell!" She said, "Yes, I did--in the hospital." It's true. Wilmington Deleware does not have a Taco Bueno so one night I took her chips and cheese from T. Bell. She remembered! Thank you Mr. and Mrs. Reaves for the food and the manicures.
Thank you to Karen and Juanette for driving my kids to and from Summer Spectacular this week. It has been a HUGE help.
Thank you to Julie and Kara for dinner tonight. What a surprise blessing!
Thank you Lauren and family for dinner another night. I love my Texas friends so much and look forward to taking a "Ya Ya" trip down there one of these days to see everyone.
You can see I am feeling blessed today. Yesterday I was down and today I am up. Yesterday I thought was the beginning of the end and today---who knows! Thank you friends for surrounding me with your love and care and encouraging me to stand firm.
Love,
Marlo

Sunday, June 24, 2007 4:21 PM CDT

We had a great day of celebration yesterday. We had lunch at my sister's house with the kids and then the grown-ups went out to dinner last night. We enjoyed learning more about my parent's courtship and early years while playing the "Not-so-newlywed" game. Anna enjoyed swimming with her cousin Kyle while we were gone. She wanted to go back to the pool this morning, but she woke up with a low fever so we left early and came on home---just in case it went up instead of down. She seems to be feeling better this afternoon. She wasn't eating this morning, but now is back to asking for something new every 10 minutes.
Speaking of eating. On Friday I was trying to get ready to go and Anna was bugging me to take her to Jason's Deli. Once she starts thinking about something she stays with it. Finally I said, "Why don't you call your friend and ask her if she will take you?" So she did and they had a great afternoon. When I got Anna back, our friend handed me Anna's leftover potato and told me that Anna had also eaten some of her macaroni and cheese. I asked my friend if she usually orders macaroni and cheese and she said, "No, Anna told me to order that for myself and then she would share it with me." Those are Anna's two favorite things at Jason's and she never can decide which one to get! I guess she knows how to get what she wants : )
Check out the new pictures!
Love,
Marlo

Friday, June 22, 2007 6:51 AM CDT

"O Lord...you know everything about me....You know my every thought....You chart the path ahead of me and tell me where to stop and rest...." (Ps 139:1-3)

I love Psalm 139, but usually I focus on some of the later verses. This week verse three stood out to me. The path ahead for us looks difficult so I try to live in the present. It is comforting to know that God has already charted my path. He knows what is going to happen AND he tells me where to stop and rest so that I will be able to face the next step. I feel like right now is a place for me to stop and rest. All along this journey he has provided times of rest for us to catch our breath in between times of great sorrow and stress. So today I will rest and enjoy the time of calm because I don't know how long it will last.
Tomorrow we will be joining my parents to celebrate their 50th wedding anniversary. We had a party for them on their 40th because my mom had cancer and we didn't know if she would make it to 50. But she did! She didn't want us to plan a party this year because we didn't know what would be happening with Anna, so we will enjoy a small family celebration. Congratulations Mom and Dad!
Love,
Marlo

Funny story: The other night Anna woke up and said, "The bed is wet!" I took her to the bathroom and she said, "I don't know how the bed gets wet. I must be sweaty." I told her that she wet the bed and she declared, "I did NOT!" I showed her the wet panties and explained how she was probably in a deep sleep and didn't wake up. She thought about it and said, "Well, I didn't mean to."

Tuesday, June 19, 2007 4:06 PM CDT

Anna had a great time swimming today. She has been asking to go every day, but we haven't been able to because of the rain. She was so proud of herself as she kicked around in her little swim ring. Thanks again to those responsible for our summer pool membership.
This morning we went to the clinic for labs. Anna's counts were good. They may or may not drop on this chemo. We will be checking them every week. She even felt good enough to "Shake her tail feathers" for the other kids and volunteers---it was definately her idea. She is a performer at heart.
The other kids are busy with summer school in the morning and VBS at night. It's hectic for them, but provides me with some rare time alone (Richard took Anna out for some special time last night.)
Love,
Marlo

Sunday, June 17, 2007 4:55 PM CDT

We continue to have good days. Praise God.
Friday was Audra's day to feel special. She had asked for a portrait of herself for her birthday. I happened to mention her request on this website and Miss Gina saw it. She called her friend Lisa and the result was a beautiful drawing of Audra. Thanks Lisa and Gina!
Saturday we went to the OCCA day at the zoo. We managed to see a few animals in between rides and rock climbing. Anna's favorite things were the merry-go-round (3 turns) and the dippin' dots. (Today in Sunday School the teacher was talking about how Soloman asked God for wisdom. Anna whispered to me, "I would have asked to eat ice cream every day.")
Today Richard got his Father's Day wish of everyone going to church together. Afterwards we came home and grilled in the rain. Richard told me we were celebrating Mother's Day too since we were in the hospital last month. He gave me a honeysuckle bush, a Guidepost magazine, and told me to go take a nap---the perfect gift!
Love,
Marlo

Friday, June 15, 2007 12:49 AM CDT

"Lord my heart is not proud; my eyes are not haughty. I don't concern myself with matters too great or awesome for me. But I have stilled and quieted myself, just as a small child is quiet with its mother. Yes, like a small child is my soul within me." (Ps 131:1-2)

We had another great evening. You can't beat sitting in a lawn chair in 75 degree weather watching 6 year olds play ball. My mild mannered (at least in public) son nailed a guy at second base. He got him out by tagging him in the face---knocked the guy flat. I was so surprised. Of course his daddy gave him a "talking to".
We came home and danced to High School Musical AGAIN. I think we are going to owe some late fees on that one!
We had a slumber party in our room because of the storms last night. This morning at 9am I thought the kids were still asleep, but I found Anna playing with her brothers on our bed. She woke up happy, not sick!!!! She just ate lunch and hasn't complained of her stomach hurting her---yea!
I know she still has cancer. I know she may die---but not today!
Love,
Marlo

Thursday, June 14, 2007 10:45 AM CDT

"I am holding you by your right hand---I the Lord your God. And I say to you, 'Do not be afraid. I am here to help you. I am the Lord, your Redeemer.'" (Isaiah 41:13)

What a great picture! I believe it, but it is also so nice to have friends ("Jesus with skin on") around me to hold my hand too. Thank you Lord!

Anna enjoyed swimming again yesterday once we got there. (As we were loading the car she started crying, "I can't go. I'm too sick!") I was walking around with her in the pool and she said, "This is more fun than laying on the couch isn't it?" Then later, "This is more fun than being sick. I'm still sick, but I'm not thinking about it." I think she probably does feel sick all of the time, but sometimes we are able to distract her with fun things to do.

We started the new pills yesterday. You wouldn't believe how much they cost. We are still waiting on insurance authorization. God has provided for every need so far, so I am trusting that if she needs these, they will be provided as well.

Love,
Marlo

Tuesday, June 12, 2007 10:23 PM CDT

Anna is having some better days this week. I dragged her to the pool today, but once she got there she decided to put on her suit and go swimming. She said the water felt great and it gave her "30 inches of energy". I'm not sure what that means, but she wants to go back tomorrow. Of course she wants to swim in the baby pool which is supposed to be off limits to transplant kids. I let her live dangerously for a little while before we transitioned to the big pool. (Thank you Leslie for getting in with her since I wasn't prepared!)

Tonight she went fishing for the first time and caught two fish. After that she was ready for a tea party. My friend K put a very impromtu party together and Anna declared it the "best tea party ever!" At one point, K thought of something else to add to the festivities. While she was gone, I asked Anna what she thought she was going to bring back. Anna said, "Well, I don't think it will be a cat." (I think that's what she was secretly hoping for.) What she did bring back was the makings for smores. We roasted mini marshmallows over a candle and had a grand time. (See photo page) Thanks friends!

Tomorrow we will start the "official" phase II study of anti-angiogenic chemotherapy. We thought we were already on it, but we were doing it wrong. Anna seems better, not worse, so no harm done. Starting tomorrow the meds will be pills instead of liquid which should make our lives easier. (If any of you moms want more info please email me.)

Love,
Marlo

Monday, June 11, 2007 6:57 AM CDT

Here's the email I got about the conversation Anna had with her babysitter yesterday. (Thanks for sharing it with me Shawna!)

Anna was really great today. She got sick for a bit, but after I finally talked her into going to the bathroom, she was better. I did have to continue reading Junie B. Jones while she was on the pot. She got the stool out for me to sit on. It was a fun potty party.

If she talks of mansions, it was from our conversation. She told me that the barn owl got Nugget and then she said "I wonder where animals go when they die?"
I said, "heaven"
She said, "which one?"
"the only one"
"yeah, I really don't know how I'm going to get my new healthy body and get out of this one"
I said, "There is nothing to be afraid of"
"I know, I know, I just don't know how it is going to happen"
"Your mom and dad are going to be with you"
"I know, I know, so animals are in heaven?"
"Yes, but the best thing about heaven is that we are with Jesus."
"And all of our family and friends."
"And there are streets of gold and pearly gates and we get mansions.
"What are mansions?"
"Does Kay have a fancy house?"
"Yes"
"Like that, but better."
"Well, my brothers and sister talked me into going in the Haunted Mansion at Disneyworld"
"No, nothing like that"
And so it went. She was very relaxed and peaceful during the whole conversation. Did she come up with all that on her own or have you been talking to her?

The only time besides being sick that she was upset is when she said that her parents were going to ask her if she'd take the yucky medicine. I said that I thought it was making her feel better (which she earlier told me.) I told her that when she starts feeling better, we could go to the zoo or she could come over. Thus the zoo talk.

Praying for you all and asking God to let us keep her for a long, long time. -SN

Saturday, June 9, 2007 8:17 PM CDT

Anna had a better day today. We were even able to go to a friend's house for dinner (although we had to leave early). I was also able to get out of the house for a few hours this afternoon which was good for me. Tomorrow is Jacob's birthday party (a few days late because of camp). Birthday season at our house will soon be over. It sure is a lot of fun while it lasts. Thanks again to everyone who helped me this year. (A big thank you to the Kinsers for hosting the party tomorrow!)
Last night we watched "High School Musical" for the first time. We all loved the music. When it was over, we watched our favorite songs again and danced around the room--even Anna. It was nice.
Love,
Marlo

Friday, June 8, 2007 3:27 PM CDT

Just wanted to let you know a bit about what is going on. We started an oral chemo regimen on Monday. We wanted to avoid the clinic and needles as much as possible so we chose something she could take at home. The chemo we are trying has not been used on liver cancer as far as we know. Our oncologist had never even prescribed some of the drugs we will be using. Our hope is that it will slow down the disease progression (of course we hope for a cure, but we've been told that slower growth is more realistic). We won't really know any effect the drugs have because Anna's AFP is off the charts at our lab (their measurements only go up to 36,000). So we will just watch and see how she feels. Right now she feels pretty bad most of the time. She wakes up saying "I feel sick" and then says it off and on all day long. Her spirit is willing but her flesh is weak. She wants to do things, but she can't. We took the kids to swim practice one day this week, but she hasn't felt like going anywhere since then. We had a little friend over the other night. The friend and Audra went upstairs to play. When I went to find Anna, she was just crawling to the top step and I heard her say, "Here I am. Sorry it took me so long." It broke my heart. It was the first time she had gone up the stairs by herself since before the surgery. We have been carrying her everywhere. It's really hard because we don't know if things will get better or if this is as good as it gets.
She wants me to be with her all the time so it's hard to do anything else--including updating this website. Richard's work has been so good to allow him to spend more time at home. It's definately easier with two people!
Prayer requests:
Anna HATES taking the chemo. It must be really bad. Pray that it would get easier or that we would find a way to take it that doesn't taste so bad.
Pray for peace---for Anna and the rest of us. She gets afraid sometimes and doesn't know why. It helps if I stay near her, but it's hard to cook dinner from the living room.
Love,
Marlo

Thursday, June 7, 2007 8:17 AM CDT

Yesterday the sky was bright and clear
I could see the sun and I could hear the song
Faith flowed like a river free and deep
And grace was not so hard to be believed
But that was yesterday
And what was close enough to touch
Now seems a world away
So what about this day

This day all His mercies are new
This day every promise is true
Father, help me to believe
Give me faith I need to know You
And trust You this day
This day

Who knows what tomorrow’s light will bring
Tears to cry or maybe songs to sing out loud
But only God can see that far away
And He made us for living day by day
‘Cause He wants us to see
That the God that He’s been every day of history
Is who He is this day

‘Cause You are the same yesterday and today and forever
Through every season Your truth and Your grace never change
Oh, Lord, I do believe that the God that
You’ve been every day of history
Is who You are this day

This day Your mercies are new
This day Your promise is true
This day my hope is in You, Lord
This day

(This Day, Steven Curtis Chapman)

Wednesday, June 6, 2007 10:02 AM CDT

Anna has been craving Chex Mix lately so I have been buying it. However, she prefers "homemade". This morning when she got up she asked, "Are we going anywhere today?" I said no. Then she thought and said, "Well then if we are staying home, you will have time to make Chex Mix!" So guess what I am doing today....
Also this morning we have had a bit of excitement. Deanna Webb of Webb's Butterfly Farm, gave us a little box with a chrysalis in it last week for Anna's birthday. We have been checking it, but hadn't seen any progress. This morning I thought I better check it again and out flew a butterfly. It landed in the sink so I called everyone to come see and to help it get outside. I have some good pictures of the release, unfortunatley Will is wearing only his underwear so I don't know if I will be able to post them! Thank you Deanna for a fun gift.
Love,
Marlo

Monday, June 4, 2007 8:39 AM CDT

"My help comes from the Lord, who made the heavens and the earth! (Ps121:2)....He prepares me for battle." (2 Sam 22:35)

Happy Birthday Jacob and Audra! 11 years ago in Ft. Worth, Texas I was rushed to an emergency C-section after 28 hours of labor. (Don't you think they could have figured that out a little sooner?) I couldn't believe it 6 days later when they let me take this little person home. Was I qualified? Didn't I need some lessons or something? We tried to raise Jacob by the book--unfortunately he couldn't read the book. By the time Audra came along 3 years later we were more relaxed. Jacob asked for a sister for his birthday and he got one! Audra was born on the island of Cyprus. My doctor lived on the second floor of the clinic. The nurses spoke Greek and served me stuffed grape leaves. They panicked every time they came in the room and I had the air conditioner on. They liked to keep the babies VERY warm. They knocked me out for Audra's birth (another Csection) so I didn't know what I had until I woke up. Then my doula (actually just my friend Val) said, "It's a girl." (Richard was out in the hall calling our family.) We were so happy. Good times.
Today Jacob is off to camp and Audra is getting ready for her first slumber party. Time flies.
Love,
Marlo

PS>Happy Birthday "Aunt" Pam. You kept Jacob when Audra was born and shared your birthday party with him. Thank you. We love you and "Uncle" Steve.

Friday, June 1, 2007 8:32 PM CDT

We had another great night last night. Our friend Mr. Jeff took us out on his boat. We rode around on the lake for over an hour. Anna loved it. It was a way for her to go fast (which she loves) and yet still sit snuggled up on my lap. Thank you for a wonderful time (and another memory).
I really don't have many words to say right now so I will leave you with something Lynda wrote after Anna's party.

"I have been a part of something truly wonderful.

It is not magical, yet it is glorious.

It is not temporary, but eternal.

It is incredible, but believable.

It is not always pretty, but it is exceptionally beautiful.

It has made me cry oceans of tears, but has brought me the most REAL joy.

It has brought me crawling to my knees, but has grown me up.

It has brought me to a crises of faith, but has made me believe that HE IS.

It has made me angry and sad, depressed and despairing, yet filled me with hope and peace, encouragement and strength.

I have been a part of something truly wonderful.

I have been a part of Anna Jane’s life."

Love,
Marlo

Thursday, May 31, 2007 2:20 PM CDT

This journey continues to be marked by joy and pain. I am so thankful for the good times mixed in! One of the things we have been amazed by is the generosity of people--friends and strangers alike. We were blessed this week by a gift from the parents at our children's school. They gave us a membership to the Sportsmans Country Club for the summer. Will and Audra are there right now and I have all three kids signed up for the swim team starting next week. That will give them a fun place to go this summer. Thank you SO MUCH to everyone who had a part in that gift. (Bone fide babysitters get in free. So if you like hanging out by the pool and you would be available to take the kids to practice, let me know!)
Anna is enjoying her new toys. Thank you to everyone for your gifts. Several of the cards got separated from their packages so I'm not sure who gave which one. So I will just say THANK YOU!
Love,
Marlo

PS. HELP! Audra has a very interesting list of things she wants for her birthday. One of them is "a trip to the swimming pool"--got that covered. One is to "paint her room blue with fish"--not going to happen. One is "a portrait of myself hanging in my room." When I asked her to explain, she said she wants one like Jacob's. His is a caricature he had done at the Arts Festival. I am wondering if any of my friends have that secret talent and would be willing to come to a slumber party on Monday!? (I promise you won't have to spend the night.)

Wednesday, May 30, 2007 12:07 AM CDT

Thank you for praying yesterday. We had a break in the rain---literally and figuratively. Anna was able to enjoy time with her family in the morning--including a surprise visit from Grammy and Papa.
She was also able to enjoy her party last night---right up until time to open the presents. Before collapsing on the couch, she was able to follow the trail of flower petals through the woods leading to her secret garden party; release live monarch butterflies (thank you Webb's Wings Butterfly Farm); play with borrowed kittens (thank you Steve); watch the live lady bug release (THOUSANDS of lady bugs); pet her old friend Squirt the duck (thanks Brent); blow out the candles on the prettiest cake I've ever seen (thank you Ally's House); be surrounded by people who love her, and enjoy the most beautiful party EVER (thank you A and K).

Today it was back to reality as we woke up early and went to the clinic. Anna had to be deaccessed and reaccessed AGAIN. They had to get another culture to see if we have knocked out this infection. We also had to give them a stool sample to test for C Diff, which would explain the tummy pain and diarrhea. I didn't have a collection kit yesterday so I had to use a Happy Birthday cup. I wish I could see the person in the lab who gets that specimen!
The doctor today used the "H" word in our conversation today. That word makes me sick to hear and I can hardly say it (hospice).
So we go from fantasy back to nightmare in less than 24 hours. "Shall I not drink the cup the Lord has given me?" Our situation sure looks like a "stone" to me, but I have to trust that my Father knows how to give good gifts to his children. (Leigh will understand that last sentence even if no one else does.)

For now, I have a tent in my living room that needs to be removed and a little girl blowing her new whistle for me to come back downstairs. (I believe I have Shelley to thank for that one.)

Love,
Marlo

Tuesday, May 29, 2007 2:26 PM CDT

Just a quick update. Anna woke up this morning saying, "I'm so sick. I KNEW I would be sick on my birthday." She rallied enough to open her presents and blow out her candles---all before breakfast. After breakfast she watched her new Curious George movie and then perked up and started playing a game with her cousins. She is taking a nap now (and getting more antibiotics) so please pray that she will wake up with energy for her party tonight.
Love,
Marlo

Check out the new photos!

Monday, May 28, 2007 6:58 PM CDT

Things have been crazy around our house. My sister and her family are visiting. We had intended to put the kids outside in a tent, but because of the rain, the tent is in my living room. Everyone but Anna seems to be having a great time. She is still about the same with short periods of feeling good, but most of her day is spent on the couch. It seems that whenever there is anything in her stomach she is miserable. So she is either miserable or hungry all day long. I SO want her to be able to enjoy her special day tomorrow. PLEASE pray for respite from her aches and pains for just one day. I wish we knew if her current state is temporary or if this how things are going to be from now on. Today she said, "Are you sad? Because you look sad." Yes, Anna I am very sad.
Marlo

Saturday, May 26, 2007 10:41 PM CDT

"I am leaving you with a gift---peace of mind and heart." (John 14:27)

We had a MUCH better day today. Anna woke up and said she felt a little better. After watching cartoons all morning, she spent a long time playing in the garage with Audra. She even felt good enough for us to leave her this evening. The teachers at Kirkland gave us a date night which included a movie and babysitting. (We are saving the dinner certificate for another night.) The kids loved having their teachers come over. I think they especially enjoyed jumping on the trampoline with Mrs. G. Thank you to all of you who had a part in giving us a night out. (We received another generous gift that I will tell you about tomorrow!)
Anna is still awake having her bedtime snack with Daddy and I am waiting to unhook her from her antibiotics. We are looking forward to seeing my sister and her family tomorrow.
Love,
Marlo

Friday, May 25, 2007 7:09 PM CDT

I think we had some improvement today. Anna still spent most of the day on the couch, but she did join us at the table for dinner. We found out that the type of infection she has SHOULD respond to what we are giving her. Pray that it will--otherwise we may have to replace her central line.
Some of you enjoy reading about the funny things Anna says and does so I thought I would share the email I got from her babysitter yesterday....

"Thanks for letting me to stay with Anna today.

Here's a few stories... She asked me to "surprise" her and pick out some books from the bookshelf...

The first one was had cartoon pictures on black and white photos... (Knuffle Bunny) As I was reading I asked her if she knew what a laundermat was... she said, No... then I told her some people have small homes or apartments and don't have room for washers and driers... she said, "Well, our room isn't very big where our washer and drier are!... She also told me that at the Ronald McDonald house she got to put the money in the machine and that was really fun... After we finished the book she said, Hey let me show you this funny thing.... she flipped to the front of the book to show me the "wedding picture, baby photo, and then the "current" photo... She doesn't miss anything!!!!

Before I started reading the next book she got the book... flipped it open to one of the pages with 15 - 20 words and she read it word for word... (memorized) and then she laughed and said, "you are going to like this one." Lilo and Stenchy"

I asked her about the birthday party in Delaware and she told me that she was just sitting there and was wondering "What is going on?" She said they had on Mickey hats, there was a cake with gummy bears on it... probably Jerome added the gummy bears... She told me there were cookies shaped like #5... presents and everything. She also told me that nurse Nan brought her some toys - My little pet shoppe???

Next she wanted the "party" macaroni around 8:45 am... I didn't fix it fast enough... when it was finally ready she started eating... and I could hear her tummy rumbling as she ate.... she asked for more and ate about 1/4 cup before saying she was full... about 10 min. after she finished is when she started asking for Mom... she'd cry and then stop and watch TV.... I offered to hold her and I asked her if anything hurt (I really did ask if I could rub her back...) and she'd say.. "I want my MOM!"... Myrtle called to see how things were going... and she could hear Anna asking for MOM... Myrtle said, "I'll let you go!" It wasn't long after Myrtle called that Anna fell asleep clutching baby under her arm and her fingers secure in her mouth. I watched her sleep and I prayed... As her "clutched" baby raised and lowered with each breath I was so happy that she wasn't hurting and wanting Mom... (Myrtle's prayers were answered!!!)
Oh... One time I walked in the kitchen and said, "I'm going to call and check on your Mom... she was on the couch saying... Miss Shelley!!! I'm trying to get control of myself... but I can't!!! THAT is when I called you... The weird thing is the pain would start and stop... start and stop... at first I just thought she wanted you... because she was easily distracted by the TV... a book... and one time I stood up and I looked in the kitchen and said, "Asta, Are you supposed to be on the cabinet? Anna immediately quit crying and in her big girl voice she said, "Miss Shelley WHAT did you say? (Asta wasn't even downstairs..and not on the cabinet.... I was just trying to get her mind off what was going on...and it worked) In fact... Remember I had a little 'fear' come over me that Asta was gone... I looked in the back yard, front yard, garage...(Isn't it crazy how your mind can play major tricks on you? The Salamy kids will NEVER forgive me for losing their dog... blah.. blah.. blah...)

Why am I telling you all this??? I don't know. I guess I wanted you to know that even though she cried a little and I could tell she didn't feel good.... she did "entertain" me, & "inspire me" with her reading knowledge, her wit, her ability to shut off crying when I asked if Asta was supposed to get on the cabinet, my non-ability to boil water faster... and #1 getting tattled on to Mom that Miss Shelley wouldn't rub her back!!!

Thanks for letting me come. Thanks for trusting me.

Love ya...
Shelley"

(No...thank YOU Shelley!)
Love,
Marlo

Thursday, May 24, 2007 9:42 PM CDT

We are glad to be home, but all is not well. Anna continues to battle a fever and just feel yucky most of the time. She tries to eat, but then feels sick. It's hard to know if this is a virus or cancer. Will she get better or will she get worse? We just don't know at this point. I am hoping that the "sensitivity study" that will be back tomorrow will show us if there is some other way we should be treating this. As it is, I am hooking her up to antibiotics every 8 hours, but I don't see much happening.
As I sat through Jacob's graduation I was amazed and very thankful that God has protected him throughout this ordeal. He is a very bright, kind, well-behaved young man. We are very proud of all our kids. Anna is not the only one who is special!
Love,
M

Thursday, May 24, 2007 11:53 AM CDT

HOME AGAIN!

Marlo, Anna and Marlo's mom, Audrey, made it safely home last night about 6:05 pm. Anna was tired but in pretty good spirits. We had some lovely balloons, streamers and signs provided by Will and Anna as well as some of Anna's secret friends. We are on vancomyacin at home via an IV pump and Anna is still feeling sick, but mostly we're just glad that we're home. We are trying to stay busy planning a good weekend and a birthday party for our girl. We're really seeking from the LORD wisdom, guidance on any possible chemo, and as always, total and complete healing from all that ails her day in and day out, including the cancer. We know He is able; we pray that it would be in His plans for her to miraculously give her a looooonnng life filled with a testimony of His grace and mercy to her.

We also want to congratulate our 5th grader, Jacob, who had his 5th grade graduation ceremony this morning. His many awards are too many to list here but he is an incredibly gifted and talented young man and we are awfully proud to call him our son.

Peace,
Richard

Wednesday, May 23, 2007 2:59 PM CDT

Good news (maybe). After meeting with our doctor and begging the clinic nurse to let us NOT come to the hospital, they have kindly offered to let Anna do her antibiotics by home health (which means a nurse comes to our house -- we did a lot of chemo this way last fall). We can do it home health IF Anna looks strong enough -- if she's really sick, we ought to take her in. Please pray that she stays strong enough. No new treatments, though -- same old options. We'll have to pick one in a few days. Pray for wisdom.

Richard

From Earlier:
Good news. The girls (Marlo, Anna, and Marlo's mom) are headed home.

Bad news. Anna's blood culture from the other day came back positive so she still has some sort of infection. That means more antibiotics, probably inpatient. That means as soon as she gets back to OKC, we will probably have to head to the hospital here.

Anna is feeling bad right now. Please pray that she makes it home safely and that we can avoid another hospital stay. An infection if unchecked can wipe her out completely so it is serious.

Also, I am supposed to meet with the oncologist this afternoon to discuss any remaining treatment options.

Richard

Wednesday, May 23, 2007 10:31 AM CDT

Good news. The girls (Marlo, Anna, and Marlo's mom) are headed home.

Bad news. Anna's blood culture from the other day came back positive so she still has some sort of infection. That means more antibiotics, probably inpatient. That means as soon as she gets back to OKC, we will probably have to head to the hospital here.

Anna is feeling bad right now. Please pray that she makes it home safely and that we can avoid another hospital stay. An infection if unchecked can wipe her out completely so it is serious.

Also, I am supposed to meet with the oncologist this afternoon to discuss any remaining treatment options.

Richard

Tuesday, May 22, 2007 11:05 AM CDT

Update 9pm---We finally got to the RM House at 3pm. After we got the last dose of antibiotics, we had a surprise birthday party from the transplant team. They came in wearing Mickey Mouse hats and carrying a cake and presents. One of the doctor's wives even made brownies shaped like the number 5. Anna graced them with a performance of "Shake Your Tail Feathers." I could tell she was feeling really weak, but she did the whole song. I was so proud of her. It was SO emotional saying goodbye. Even the social worker broke down when she took me to another room to discuss our plans once we get home. One of the doctors told Anna that he was going to name his daughter (if he ever has one) after her and his grandmother. Did I mention that I love these people?

Funny story--When we were eating dinner I told Anna that she was doing a great job eating. She looked at me and said, "Well, the food's better here."

"Weeping may last for a night, but joy comes in the morning."

When I talk to someone whose child has been recently diagnosed with cancer I always tell them, "It's not going to be ALL bad." When you get the shock of diagnosis you think you will never be happy again. There have been lots of dark and scary times during the past 2 years, but there have been wonderful times as well. As we face the future, it is tempting to think we will NEVER be happy again, but I know that is NOT true. Last night I was thinking about how Jesus was able to endure his suffering because of the joy set before him. I KNOW this world is temporary and that we have eternity before us. I KNOW there is joy ahead in heaven, BUT I also know that there is joy ahead in this life. (I just wish we didn't have to go through "hell" to get there.)

Anna has been doing MUCH better today. She spiked a fever yesterday for no apparent reason. It is still 99 today so we hope that it will stay down. She has finally started eating! I was SO frustrated about that yesterday--thinking I would have to watch her starve to death. Today she has been hungry and the food doesn't make her sick. THANK YOU for praying for that specific request. We have been saying goodbye to all of our friends here. That has been very hard on me. It's not hard on Anna because she says she will see them the next time she comes here. I've tried to tell her that we are not coming back, but she doesn't believe me.
Love,
Marlo

Monday, May 21, 2007 8:34 PM CDT

Help me, God I'm scared
And I'm unprepared to face the night alone
Hear me, hear my prayer
My soul it aches
And I've nowhere to go
Help me God

In this dark hour I know only the power
That made the stars
Can mend my heart

Oh I've tried on my own, but I'm not that strong
You're all I've got
You're all I've got
Help me God

Sometimes, people leave
And I can grieve cause life's not always fair
Help me to hold on
Tho I can't see you, I believe you're there
I know you're there

In this dark hour I know only the power
That made the stars
Can mend my heart

Oh I've tried on my own
But I'm not that strong
You're all I've got
You're all I've got
Help me God

(Help Me God, Kathy Troccoli)

Monday, May 21, 2007 10:27 AM CDT

"The Lord is for me, so I will not be afraid." (Psalm 118:6)

We are still on for departure on Wednesday. Anna did have a staph infection so they want to finish the antibiotics tomorrow before they discharge us. We are going to take her off the TPN today so she will be on her own as far as nutrition goes. She ate part of a bran muffin for breakfast. (I don't know why I tell you everything she eats--except that it's such a big part of our world at the moment.)
When we get home it will be a whirlwind of activity with the end of school, a weekend visit from Aunt Shonda and Uncle Marc, and THREE birthday parties. (Anna's, Jacob's, and Audra's) THANK YOU to those of you who are helping me manage everything. I could NOT do it without you!
Love,
Marlo

Sunday, May 20, 2007 7:06 PM CDT

Anna has been grouchy today and I haven't been much better. Sundays always seem to be the hardest. We were hard pressed to find something to do. I spent much of the day trying to get Anna to eat. She ended up eating cucumbers and ranch dressing for lunch and Taco Bell chips and cheese for dinner. It's not much, but it's something.
Just a few more days....
Marlo

Saturday, May 19, 2007 4:51 PM CDT

"real life comes by feeding on every word of the Lord."
(Deuteronomy 8:3)

It has been a quiet day here. We went shopping downstairs---again. (Thanks Cheryl) Anna bought a kazoo and has been practicing a song to play for nurse Nan on Monday. We also took Anna to the cafeteria so that she could pick out something that looked good to her. She picked out sour gummy worms and pistachios.
She is still having tummy "issues", but I think those can be addressed at home. They are going to start weaning her off the TPN (IV nutrition) to see if she will eat and drink a bit more on her own. If all goes well, we should be discharged to the RM House on Monday or Tuesday.
That means I should be there for Jacob's awards ceremony and for Will's last day party. I'm hope they will forget the things that I've missed the past two years!
Counting days...
Marlo

Friday, May 18, 2007 2:34 PM CDT

"Don't let what you can't control destroy what you can enjoy." (T. Nelson)

We are having a MUCH better day. We started the day with a visit from Nurse Nan who brought an early birthday present. Anna loved the little pony sweet shop and ice-cream cart. Later she got up and got dressed for the first time in two weeks. She also left her room for the first time. She walked as far as she could and then rode the rest of the way to the play room in her stroller. She took 10 minutes to pick out a prize from the special toy chest, then suffered from "buyers remorse" after opening it. ("This wasn't what I really wanted....") When we got back to the room we had a visit from a mom I met on the oncology floor last summer. She brought more presents so we have plenty to keep us busy for a while. (Of course you parents have noticed that the more they get, the more they want!)
We are still waiting for the tests to come back on Anna's blood culture so that they will know how to treat her infection. Usually it's a 7-10 day course of antibiotics, but we could probably finish it at home. If nothing else happens this weekend we are HOPING to go home early next week. My new goal is to get there in time for Jacob's 5th grade awards ceremony next Thursday. Pray for a boring (yet fun) weekend.
Love,
Marlo

Thursday, May 17, 2007 6:35 PM CDT

"We live close to death, but here we are, still alive... Our hearts ache, but we always have joy." (2 Cor 6:9-10)

It was not a good day, but it seems to be ending well. Anna spent most of the day asleep with a fever of 102. She is awake now and trying to eat something. Her fever is gone and she wants to play "Go Fish" later. I think it may be a late night since she slept so much today!
Love,
Marlo
PS. Thank you Cheryl for a bright spot in her day.

Thursday, May 17, 2007 9:33 AM CDT

We have had a full day already. They removed Anna's drain. I love the folks here, but let me tell you I felt like the whole process was run by Laurel and Hardy. Anna said, "This is taking too long!" She feels much better having it out and said that it didn't even hurt coming out. (The anticipation though was TORTURE!)
Now that the drain is finished, and the stomach is waking up, we have another problem. Anna has an infection in her central line--thus the fever last night. So she is on antibiotics for that. I told the nurse that God must want us to stay here a little longer.
While Anna was doped up on ativan and morphine, we went ahead and deacessed/reacessed her port. (That means we have been here another full week.)
Hopefully we are done with the hard stuff today and now we can relax (and I can take a shower).
Love,
Marlo

Wednesday, May 16, 2007 9:24 PM CDT

Quick Update for those of you checking in before bedtime: Just when things were taking a turn for the better, Anna spiked a 100.6 fever (which for her is high). They are going to take some blood samples to see if it is an infection. Whenever you have tubes sticking into your body (like the drain she's had), there is an increased risk of infection. We're thankful for a good day and hope this fever passes quickly.

Richard

Wednesday, May 16, 2007 11:10 AM CDT

Anna has been busy this morning. She has been reading with Grammy, doing "school" with the hospital teacher, painting her nails with Jessica from child life, and EATING. She woke up and asked for corn on the cob so I had to go to the grocery store and buy some. Then Grammy went back to the RM House to cook it. She didn't eat much, but it's a start. Now we will wait to see if it stays down.
Her drain is ready to come out and she is VERY anxious about it. IF she has the botox tomorrow they will wait until then to take out the drain (while she is asleep). If they are not going to do the botox, they will take out the drain today. When Anna asked me when they were going to take it out, I told her I didn't know. She looked at me and said, "Sometimes when you say you don't know, I think you are lying and I don't believe you." SO SMART!
Right now she is sitting on the couch (she won't stay in her bed during the day) laughing and watching a Road Runner cartoon.
Thank you for praying. We are having a much better day.
Love,
Marlo

Wednesday, May 16, 2007 11:10 AM CDT

Anna has been busy this morning. She has been reading with Grammy, doing "school" with the hospital teacher, painting her nails with Jessica from child life, and EATING. She woke up and asked for corn on the cob so I had to go to the grocery store and buy some. Then Grammy went back to the RM House to cook it. She didn't eat much, but it's a start. Now we will wait to see if it stays down.
Her drain is ready to come out and she is VERY anxious about it. IF she has the botox tomorrow they will wait until then to take out the drain (while she is asleep). If they are not going to do the botox, they will take out the drain today. When Anna asked me when they were going to take it out, I told her I didn't know. She looked at me and said, "Sometimes when you say you don't know, I think you are lying and I don't believe you." SO SMART!
Right now she is sitting on the couch (she won't stay in her bed during the day) laughing and watching a Road Runner cartoon.
Thank you for praying. We are having a much better day.
Love,
Marlo

Tuesday, May 15, 2007 8:53 AM CDT

Update 5pm---The GI folks want to try medication before Botox so now we are on Reglan 4x a day to see if that helps. (I said, "You do know that we are from Oklahoma and we are trying to get home quickly don't you?") I think the transplant guys talked them into putting Anna on the Botox schedule for later in the week--just in case she needs it. She hasn't thrown up today, but she hasn't eaten either.
Grammy arrived safely and Richard is in the air.

You will never guess what they are going to do to fix this problem. It involves a Botox injection! They will put Anna to sleep and stick a camera down her throat into her stomach. Then they will inject the Botox into her pyloric valve to relax it. Another option is to just wait for it to relax by itself, but frankly we don't have time to just sit around not eating and throwing up.
Except for being nauseous, Anna is in good form. Richard keeps us laughing by reading Junie B. Jones books.
Hopefully they will be able to do the injection today or tomorrow and then maybe we can leave later this week. My goal was to make it home in time for Audra's recital on Saturday. I talked to Audra last night about the private recital we would have if I don't make it back in time for the real one. She was okay with that as long as she could invite Mrs. Reaves.
Love,
Marlo

Monday, May 14, 2007 3:54 PM CDT

"Jesus said to the people, "I am the light of the world. If you follow me, you won't be stumbling through the darkness, because you will have the light that leads to life." (John 8:12)

We have been stumbling in the darkness the past few days. It turns out that Anna's problem is not because she WON'T eat, it's because she CAN'T eat. We did a test today that showed that whatever goes into her stomach stays there until she throws it back up. The theory is that the nerve that controls the pyloric valve was damaged during surgery. So now the valve is stuck closed and won't let her stomach empty into her intestine. (That may be more than some of you wanted to know.) Now that they have figured out the problem, we are waiting to see how they are going to fix it.
Richard is leaving tomorrow and my mom will arrive to take his place. Hopefully it won't be too much longer....
Waiting,
Marlo

Sunday, May 13, 2007 12:59 AM CDT

Happy Mothers Day to Grammy and Sitti who have been "mom" to my kids this week. Thank you for all your help--past, present, and future. We love you!

All I wanted for Mothers Day was a long walk and a bath. I've already had both of those things so I'm good. But I'm also enjoying some lovely lemon cookies and tea thanks to my cousin Becca. And on my feet, I am sporting some very fancy flip-flops thanks to some friends from church. (Anna has matching ones when she decides to wear them.)

If Anna is making any progress, it is very slow. Richard hates to leave us when she still seems so sick. He is so much more patient than I am. Anna is lucky he's still here!

Love,
Marlo

I don't mind if you've got something
nice to say about me.
And I enjoy an accolade like the rest.
You could take my picture and hang it in a gallery
Of all the who's who and so-n-so's
that used to be the best
At such 'n such...it wouldn't matter much.

I won't lie, it feels alright
to see your name in lights
We all need an "Atta boy" or "Atta girl"
But in the end
I'd like to hang my hat on more besides
the temporary trappings of this world

I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to you enough to make a mark on things?
I want to leave an offering,
A child of mercy and grace
who blessed Your name unapologetically
And leave that kind of legacy.

(Legacy, Nicholle Nordeman)

Saturday, May 12, 2007 1:02 PM CDT

I think we have made some small improvements today. Anna hasn't had morphine all day. She woke up at 6am and said, "What do I do now?" (Translation: How are you going to entertain me?) A perfect mom would have played dollhouse or whipped out the paints. A tired mom (me) turned on the TV, handed her some earphones, and went back to sleep. She still isn't eating, but has taken some sips today. She is fighting us on everything. When it was time for labs (a very easy process) she started screaming, "It's going to hurt! It's going to hurt!" I asked her if it hurt yesterday (they do it every morning). At first she said yes, then she said, "Well, actually it didn't...but I know it's going to hurt today!"
It took an hour of negotiating being weighed before I finally just scooped her up and stepped on the scales. Truthfully, I'm glad she's fighting, but it does drive me crazy. I know she is anxious about the new drain. It would scare me too. She remembers the drain she had last summer that hurt SO SO bad when it came out. This kind isn't supposed to hurt when it comes out, but I can't convince her of that.
Pray that Anna will be able to eat and drink soon and that the drain will dry up so they can remove it.
Love,
Marlo

Friday, May 11, 2007 4:39 PM CDT

"When Saul returned to his home...a band of men whose hearts God had touched became his constant companions." (1Samuel 10:26)

We are so thankful for you, our constant companions, who are faithfully praying for us and encouraging us.

Anna's procedure seems to have done what it was supposed to do. They drained a lot of blood from the site. Hopefully she will be able to eat now. She is in pain from the incision, but I don't think she has the pain from the pressure anymore. It's hard to tell because they are giving her morphine again. If she is stable tomorrow, Richard will be going back home on Sunday. Hopefully, Anna and I will follow in a few days.
Love,
Marlo

Friday, May 11, 2007 10:00 AM CDT

Anna's procedure is set for 1:00 this afternoon (eastern time). It should take about an hour if all goes well. They will put in an external drain as a precaution. Hopefully, that drain will come out in a couple days.

Anna has had a better morning but is hurting right now. We really want to get this procedure over with and give her some relief. We pray that it would be 100% successful and we could get Anna well enough to get back to OKC. We really don't have many options once we get back to OKC but we just don't want to spend any more time away from family than we have to (although God has graciously provided lots of support out here in Delaware).

Marlo will check back in later with an update on how the procedure went.

Thanks for checking in.

Thursday, May 10, 2007 4:31 PM CDT

Update 8pm---Anna is finally resting comfortably after we asked that she be put back on morphine.

A disappointing day overall -- not much improvement in Anna's condition. She started throwing up whatever we would try to get down her. They did a CT scan this morning and discovered a large body of fluid in her abdomen filling in the space where one of the tumors was. It is causing a lot of pain and discomfort as well as keeping her from eating or drinking because it is so close to her stomach. It is disappointing for a couple reasons, first - because it will delay our return to OKC, and second -- because it is just additional pain and suffering for a little girl who has already had more than her share. Tomorrow the doctors are going to insert a drain into the fluid which they will leave in for an undetermined amount of time - as little as a few days or who knows how long otherwise. It will be done while she's under sedation but we hope that we do not have go back to the ICU (since it took us forever to get out of the ICU).

Thanks for checking in.

Richard

Wednesday, May 9, 2007 10:36 AM CDT

Update 5pm--After a minor outburst by me to the doctor in charge, we are finally being moved. I was okay staying here until I found out we couldn't take Anna off the unit. (Most ICU patients don't want to go to the gift shop--Anna didn't really want to go either, but I was trying to get her out of bed.)

When the doctor made his rounds this morning he said, "Well, Anna you may be the first patient to be discharged from the ICU."
Usually kids get moved upstairs before they leave the hospital, but I guess there are still no private rooms up there.
We have nurse Abby today. She was our nurse last summer after the transplant. I really like her, but Anna doesn't like any nurse right now. If she knew any cuss words she would be using them. I think the ICU nurses are used to their patients being a little more "out of it". Anna is being very vocal about the quality of their work.
Last night wasn't quite as bad. I tried to sleep in the bed with Anna since there is only one sleeping chair in the room. Anna is on "blow-by" oxygen which means we lay the O2 face mask next to her on the pillow. Last night she couldn't get comfortable so every time she turned her head, she would "de-sat" and the alarm would go off. Then I would wake up and put the mask on the other side of the pillow. It felt like this happened every five minutes. I am so thankful that Richard is still here. We had planned for him to go home Sunday or Monday when we were out of the ICU, but of course that hasn't happened. To go home we have to transition Anna off of IV fluids and onto eating and drinking. Right now she is not interested in either. Pray for hunger and thirst.
Thanks for checking on us.
Love,
Marlo

Tuesday, May 8, 2007 2:57 PM CDT

Update 8pm--We are going to have to spend another night in ICU as we wait for a room. YUCK! I'm trying to be thankful. Maybe there is some reason we need to be here tonight (although I hope not!)
I have been told that Anna is one of the stars of the new video for Ally's house. I can't access video on this computer, so I haven't seen it. If you would like to see it, go to
www.allyshouse.net Look for the link to the new promotional video.

We are still waiting for a room upstairs. The doctor said we could go yesterday, but there aren't any rooms so we are stuck in the ICU.
Anna had a terrible night. She was having back and arm pain which the morphine didn't touch. At one point she was turning around in the bed, ripping off her oxygen and yelling, "I can't do this!" (My feelings exactly!) We helped her sit on the potty and that seemed to help for a while. She finally fell into a deep sleep this morning about the time the doctors started making their rounds---uugh! She has been better today, but we are still dealing with nerve pain in her shoulder and arm.
Hopefully we will all be able to sleep better tonight!
Love,
Marlo

Monday, May 7, 2007 8:17 AM CDT

"God is our refuge and strength, always ready to help in times of trouble...Be still, and know that I am GOD!...The Lord Almighty is here among us...."(Ps 46:1,10,11)

Things are looking better today. There doesn't seem to be any bleeding. The drop in hemoglobin was probably a result of seepage after the surgery. Now that we have replenished the blood that she lost and upped the morphine, Anna feels a lot better. Last night I was afraid she was hallucinating. She woke up and said "basement!" We started asking her questions like, "Do you know where you are?" (yes), "Do you know who I am?" (yes), "What is your dogs name?" ("I'm not saying!"). Then she said, "I was talking about the basement at the Ronald McDonald House!" Oh.

There is no more talk of "cure". Now we talk about "quality of life". I started thinking about that. You know Anna isn't the only one whose condition is "terminal". Aren't we all dying? Some of us have more time left than others, but everyone's time is limited. Shouldn't we all be concerned with the "quality" of our lives?

Thinking,
Marlo

Sunday, May 6, 2007 3:21 PM CDT

Be still my soul,
The Lord is on your side.
Bear patiently
The cross of grief or pain.

Leave to thy God
To order and provide.
In every change
He faithful will remain.

(Be Still My Soul)

We have not seen much improvement today. They have given Anna blood and plasma and now we are waiting to see if her hemoglobin drops again (which will indicate an active bleed). Her stomach is swollen and VERY sensitive. She is also have some trouble breathing. Her respirations are very fast and she is still requiring oxygen. Her fever has gone down, but it looks like her heart rate is going back up. Did I mention that the ICU is a very stressful place?

Thanks again for the encouraging emails and guestbook entries. They are a little hard to read through the tears. Richard can come back in the room and take one look at me and ask, "Have you been reading the guestbook again?"

Love,
Marlo

Sunday, May 6, 2007 7:33 AM CDT

Anna is getting blood right now. Her hemoglobin dropped from 12 to 8. There could be several reasons. Pray that if she is having internal bleeding that it will stop on its own. She doesn't feel very good, but was able to ask for her Tom and Jerry movie. We will be ICU another day as they try to figure this out. We have the same nurse we had yesterday so hopefully she is used to him by now. The night nurse made her very nervous.
Thanks for praying for us again today.
Love,
Marlo

Saturday, May 5, 2007 7:29 PM CDT

"Search for the Lord and for his strength, and keep on searching." (Psalm 105:4)

We are searching for that strength. There seems to be a raging battle going on for our minds and emotions. I was reminded of a verse I wrote in my journal before Anna was born (when we thought she had Down's Syndrome).
"Why are you so angry?" the Lord asked him. "Why do you look so dejected? You will be accepted if you respond in the right way. But if you refuse to respond correctly, then watch out! Sin is waiting to attack and destroy you, and you must subdue it." (Gen. 3:6-7)
We MUST respond in the right way. It would be easy to give in to despair, but I cannot. I must continue to trust.
Thank you for praying for us and hurting with us.
Pray for Anna's fever to go away and stay away. We are spending another night in the ICU and may move upstairs tomorrow. We are hoping to be able to take her home by next weekend. Pray for her to be able to rest. The ICU is a very stressful environment.
Love,
Marlo

Saturday, May 5, 2007 6:37 AM CDT

Richard gave the facts in the prior post, now I'll give you the feelings.
The pain right now is indescribable. It hurts so much for me just to look at Anna (with her round little face and her Patrick Star tattoo on her forehead). I alternate between curling up under a blanket and sitting by her bed. I can't eat or sleep. I don't want to talk to anyone. The four people I called last night were lucky they weren't home because they wouldn't have been able to understand what I was saying anyway. I think it was God's way of saying "Run to me and no one else." I know I should and I will, but first I have to get past my disappointment with God. (James Dobson calls it the "betrayal barrier".) We said before we got the news, "Tho he slay me, yet will I trust him." (from the book of Job) But I honestly never thought he would "slay" me. We were so happy and excited on Thursday--fully expecting an end to our suffering. This was NOT the end I expected. The shock has shaken me to the core. Richard is holding it together and seems peaceful which is good. (We decided long ago that only one of us could fall apart at a time.)
I know this stage will pass, but I wanted you to know what it was like. (Some of you know very well what it is like.)
I have so many thoughts and feelings right now, but I should probably stop spilling them out on a website.
Thank you for praying. I know my faith will survive this. I hope yours will too.
Love,
Marlo

Saturday, May 5, 2007 3:51 AM CDT

Sorry for not updating sooner, but the news was bad and we needed some time to process it. There was more cancer spread throughout her abdomen than the MRI showed. In addition to the tumors around her stomach, the cancer has once again infiltrated her new liver. They got out what they could without doing too much damage but had to leave some tumor behind. Our surgeon told us that he thinks he has done all he can for her (and if you knew our surgeon, you'd know that he has done far more than anyone else would've done; so if he thinks it's time to quit, he's probably right). We may think about doing a little more chemo when we get back to OKC but we may also decide to give her a few months without chemo, labs, shots, etc.

While we are continuing to ask the LORD for a miraculous healing, right now we are focused on a speedy recovery and quick return to OKC. She's running a fever right now and in some discomfort. Hopefully that will work itself out and we'll get out of ICU tomorrow and back to a regular room, then back to the McDonald House.

Thanks for checking in.
Richard

Friday, May 4, 2007 6:25 AM CDT

Update #3 3:30pm
Anna is still in surgery. It always seems to take longer than they think it will. The last word we had was that they were taking out tumor. It wasn't one mass, but several small ones. I'm sure that makes it more difficult to find everything.
Thank you to Cheryl for wanting to buy the ponies. One is $2 and one is .50. We are real big spenders! (I can't email you because the hospital computer won't let me. The "Net Nanny" says that cox.net is not appropriate for the RM Family Room!)

Update #2 1:15pm
Anna is still in surgery. The nurse who gives us hourly updates (Meg)couldn't really see what was going on because there were three doctors working on Anna. All she knew was that they were working in the area of the tumor.
Thank you for the posts in the guestbook. It's comforting to know that people are praying for us.

Update #1 11:15am
Anna went into the OR at 10:50am. They think they will have to disconnect a bile duct to be able to get to the tumor. The MRI showed the main tumor and possibly one other near the site from the surgery in February. Anna was very calm all morning. She said she was scared one time, but she was very cooperative. She is hoping to get a card with money in it today so that she can go to the gift shop after her "test" and buy a little pony she saw yesterday. Hopefully she is dreaming about that. She is also busy planning her birthday party and another tea party. She has lots to look forward too...

They have moved Anna's surgery to 9:30 Eastern time. It could take as long as 4 hours. They will be looking to make sure they don't see any other tumors. Pray that their eyes would see anything that might be hidden.
Anna had a good night and is still sleeping. She seems very peaceful. Pray that she will not be anxious this morning when she wakes up.
Pray for Dr. Dunn and Dr. Savo as they perform the surgery.
Love,
Marlo

Thursday, May 3, 2007 10:23 AM CDT

Anna is having her MRI right now. Everything went as planned this morning. She was pretty scared to get accessed in a strange clinic. We both worked up a sweat. (Me trying to hold her down and her trying to get loose.) Once that was over she was much better. The MRI nurse was great and let me hold her while she fell asleep. We were supposed to be admitted right after the test, but we asked if we could leave and come back at 5pm. We have another favorite restaurant and candy store we have to visit. Also some time on the playground is on our schedule. So that is the new plan. We should be in surgery at 8am tomorrow(7am in Oklahoma).
I better go see if Anna is finished. I have Baby with me and she will be asking about her when she wakes up!
Love,
Marlo

Wednesday, May 2, 2007 3:03 PM CDT

We had a great/uneventful trip today. Anna has been going strong since 3:15 this morning with only a short nap on the plane. She was singing praise songs at 4am. I am amazed at her attitude.
We have an MRI tomorrow at 10am. Pray that everything that needs to be seen will show up on the scan. We will be admitted after the MRI.
Love,
Marlo

Monday, April 30, 2007 8:50 PM CDT

We spent the day getting ready to go. Anna seems to be okay with everything. A couple of times she has confessed to being afraid, but most of the time she is talking about the surprises she will get on the airplane or the treasure chest at the Ronald McDonald House. She told Richard today that she did not want ice chips when she woke up so I know she knows exactly what is going on. I have been a little grumpy myself because I know exactly what is going on too. It does get easier (packing up to go back to Delaware), but it never gets easy. We will leave Wednesday and be back by Mother's Day at the earliest. Thanks for praying for us. We don't want to ever give up asking for healing.
Love,
Marlo

Sunday, April 29, 2007 2:38 PM CDT

"Sing a new song to the Lord, for he has done wonderful deeds." (Psalm 98:1)

We had a wonderful day yesterday. Will had his first T-ball game. It was a tie, 19-19. It was a lot of fun to watch and the weather was beautiful.
Last night we went to OU for the Relay for Life. It was an incredible experience. Anna was the youngest "survivor" represented. She walked the opening lap with 47 other cancer survivors. Halfway around the circle, the families were invited to join group to finish the lap. There were 78 teams and each team gave us a small gift. We all had our hands full! Anna kept saying, "Why are they giving us all of this stuff?" Next we had a special survivor dinner. It was great to be able to get to know some of the teenagers that we see at the clinic. They really are neat people. Jennifer Wallace (who invited us to participate) is a survivor who was on the Relay committee, and also on a walking team. She raised over $1,000 by herself. (You had to raise at least $100 to be able to participate.) She was the one who ended up carrying Anna around the track. What a girl! After dinner Anna was one of the judge for the Ms Relay pageant (actually they were boys dressed like girls). This turned out to be my kids favorite part of the night. They thought it was hilarious. After the pageant we spent the rest of the evening at the inflatables and didn't leave until after 10pm. As we were leaving they turned out all the lights and lit lumineries which represented people who had died of cancer this year. They read the names while the walkers walked in silence. We heard the names of some kids we knew from the clinic. It was a very nice ceremony. After we left, the walkers kept walking until 7am. The kids are already asking if we can stay all night next year!
Thank you to everyone who participated (all 750+ people).
Love,
Marlo

Thursday, April 26, 2007 8:42 PM CDT

"How great is the love the Father has lavished on us....."
"Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love....if we love one another, God lives in us and his love is made complete in us." (1 John 3:1, 4:7,8,12)

I wrote about love because I have felt SO loved the past two days. I know every good and perfect gift comes from above. I thank my friends for every email, phone call, card, gift, or act of kindness, and I praise God for loving me through them.
I am so blessed. Thank you , thank you, thank you.

Love,
Marlo

Tuesday, April 24, 2007 3:41 PM CDT

Psalm 90:17 And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful.

Things are all set and we pray that the Lord will make our efforts successful.

The kids had a great time last night. Our friends the Buchanans were able to join us. Anna LOVED playing with their daughter. She is already asking when she can see her again. It is so fun for me to see her with a little friend.
When we got ready for bed, Anna was afraid to go to sleep. She was having scary thoughts. We ate dinner in the "movie room" at the restaurant. And what horror movie was causing this trauma you may ask--Jerry Lewis in "The Nutty Professor". This will bother her for days just like the "Frankendoodle" episode of Sponge Bob did.
We went to the clinic for labs this morning and Anna performed an impromtu lipsync/dance to "Shake Your Tail Feathers". She is quite the performer at times.
Love,
Marlo

Monday, April 23, 2007 3:23 PM CDT

We are counting down the minutes until we go to Incredible Pizza. We started counting the hours at 10 o'clock this morning. Will can hardly contain his excitement. We had to make a quick trip to the pediatrician for him this afternoon. He slammed his finger in the door last week and it still hurts. I think he may lose the fingernail, but at least it's not broken. When he did it, he had just put mud all over his chin. He was supposed to be the dad and that was his beard:)
We had a very restful Sunday yesterday. The kids were at a friends house all afternoon working on a birthday surprise. It's something involving "words". Anna is doing a good job keeping a secret. This morning I said, "So tell me what some of your words were." She squinted at me a minute and then said, "Am I supposed to tell you?"
We talked to Delaware this afternoon and now we have a plan. We will fly up next Wednesday, have an MRI on Thursday (that's Nurse Nan's department), then have the surgery on Friday. Richard will probably come back on Sunday and then Anna and I will stay until she recovers enough to travel. HOPEFULLY we will be back before Audra's piano recital on the 19th. She and I are playing a duet and I really want to be there for her.
It feels good to have a plan even though I want the tumor out yesterday. Pray that it won't grow or spread before next Friday.
Love,
Marlo

Sunday, April 22, 2007 6:47 AM CDT

Thank you for all the birthday wishes. One of the reasons I was so surprised yesterday was because it wasn't even my birthday. It's not until Thursday, but at our house you get to celebrate all week long. Will is counting the days until we get to celebrate at Incredible Pizza (Monday if anyone would like to join us:) Right now he lives for Incredible Pizzza and garage sales. We are hoping he will develop more interests as he gets older.
Anna wet the bed again last night. It wouldn't be so bad except she sleeps with us. We are a regular "pit crew" though and we got it all cleaned up and were back in bed in 8 minutes--a new record! You probably didn't need to know that, but nothing else has happened since my last update.
Love,
Marlo

Saturday, April 21, 2007 5:47 PM CDT

What a day.
It started out with me crying in the grocery store. ( I should know better than to listen to inspirational podcasts in public.)
It ended with a surprise birthday tea party. What fun! I had a party last year for my 39th so I NEVER expected another surprise. Thank you to all my wonderful friends who came. We had one table for the girls and one for the moms. Anna loved the three tier plates and declared it the "best tea party ever." She especially liked having her "big girl" friends Emily and Addie there. She told me she was pretending they were her mom. I liked having my Oklahoma "big girl" friends there too. I am also thankful for my faraway friends in Texas, Kansas, Boston, Arizona, Turkey, Australia, and other places. Many of you are "old" friends and many I have never even met, but you encourage me and pray for me. Thank you!
Love,
Marlo

Friday, April 20, 2007 2:54 PM CDT

I can't leave you with such a sad journal entry--especially since we have had such a good day today. I decided to take Anna and Will to the mall this morning. Anna has decided that Richard needs a hammock for Father's Day. I saw one in a sales circular so off we went to get it. We paid for it (all we had was a ticket that had the sales info on it) and were told that we could pick it up at package pick-up when we were ready to leave. Great! We then proceded to ride the escalator EIGHTEEN TIMES. Anna kept saying, "This is so much fun. Thank you for taking us to the mall." Then we did other fun mall stuff like getting a pretzel and throwing pennies in the fountain. The only other shopping we did was in the candy store. Then we loaded up and went to pick up the hammock. Surprise! They didn't have any hammocks (am I even spelling that word correctly?) So I had to unload the kids and go back in the store to get a refund. Anna was crying saying, "My heart is melting. What are we going to get Daddy?" and "If we were playing the 'high/low' game this would be my low." So I guess it was a wasted trip except that we all had a good time.
Love,
Marlo

Friday, April 20, 2007 9:08 AM CDT

We found out Wednesday afternoon that Anna's AFP went back up after the last round of chemo. It was news that we were NOT expecting, so it really caught us by surprise. I walked around yesterday with a "tape" playing in my head saying, "My child is going to die." (Some of you have no idea what I am talking about and some of you know EXACTLY what I am talking about.) It is really hard to function with that thought running through your mind. How do you clean the bathroom when your child is dying? How do you fix lunch when your child is dying? How do you do anything? To tell you the truth, my child has been dying for over two years now. If I listened to the voice in my head I would have crawled up in bed a long time ago. I CAN'T think that way. I have to replace those thoughts with others.
I went to the Bible and to music--my two best defenses against depression. The passage I read was in Joshua chapter 22. In it Joshua was talking to the two tribes who had helped the Israelites conquer the promised land, but had already received their inheritance on the other side of the river.

"you have obeyed every order I have given you...even though the campaign has lasted for such a long time. You have been careful to obey the commands of the Lord your God up to the present day...So go home now..."

Oh, how I long to hear those words, "Go home now, it's over."

Life can be so good
Life can be so hard
Never knowing what each day
Will bring to where you are
Sometimes I forget
And sometimes I can't see
That whatever comes my way
You'll be with me

My life is in your hands
My heart is in your keeping
I'm never without hope
Not when my future is with you

My life is in your hands
And though I may not see clearly
I will lift my voice and sing
Cause your love does amazing things
Lord, I know, my life is in your hands

Nothing is for sure
Nothing is for keeps
All I know is that your love
Will live eternally
So I will find my way,
And I will find my peace
Knowing that you'll meet my every need

My life is in your hands
My heart is in your keeping
I'm never without hope
Not when my future is with you.

(My Life is in Your Hands, Kathy Troccoli)

Today is a new day and we press on. I have turned off that "tape" and now I can clean the bathrooms:)

Love,
Marlo

Wednesday, April 18, 2007 4:42 PM CDT

"No good thing will the Lord withhold from those who do what is right." (Psalm 84:11)

Anna seems to be back to her old self. The only lingering effect is a tingling in her mouth when she eats or drinks something cold. This wouldn't be much of a problem if her favorite food wasn't ice-cream. She asked me to warm it up today.
Last night when she was sick she said, "I don't know why I'm so sick." Richard explain that the chemo made her sick, but that someday she would be done with chemo, meds, and surgeries. She asked when that would be. Richard told her he didn't know. She thought for a minute and said, "Probably when I die."
She still talks about the Easter play at our church. This week she told us that her favorite part was when Jesus picked up the little girl, because then she knew that Jesus really did love little kids. Thank you to everyone who was involved with the production. It meant a lot to Anna.
Love,
Marlo

Tuesday, April 17, 2007 3:35 PM CDT

Day 2 of this chemo is LONG. We were at the clinic from 9 until 2:30. We got home just in time to meet the bus. Anna feels pretty yucky, but hopefully will bounce back by tomorrow. Her blood sugar is really high so we are trying to figure out if there is a med that is causing that. She needed insulin for a few weeks after her Whipple procedure so maybe it's related to that.
Today I was talking to the coordinator in Delaware and I said, "Well, we haven't got the plane tickets yet." Anna picked right up on that and asked, "What plane tickets?" She wouldn't let up until I told her "Delaware". Then she wanted to know why we were going there. I told her she had a little something that they needed to get out. She wanted to know HOW they were going to do that. I said I didn't know and she said, "They will probably give me that medicine, then cut me open and take it out, and then sew me back up." (She was very calm when she said this.) What I was dreading most about this whole thing was having to tell her---and she told herself!
Today at the clinic they were doing an activity where they had to finish the statement, "I can......." Anna said several things (she thinks she can do everything), but the last thing she said was, "I can be brave." YES, YOU CAN!
Love,
Marlo

Sunday, April 15, 2007 9:04 PM CDT

"O Lord Almighty, happy are those who trust in you." (Ps 84:12)

We had a great weekend. Yesterday the WHOLE family went to the movie and then had lunch at the mall. I know some people do that every weekend, but not us. It was a real treat. (Thank you Susan for giving us the movie cards.) Today we went to church then spent the afternoon outside. Anna is really working on her jumping. She still needs help, but we are thrilled that she is trying to do more gross motor activities.
We will be at the clinic all day tomorrow and all day Tuesday. Even though it takes several hours, we are VERY thankful that we don't have to be admitted for this type of chemo.
Love,
Marlo

Friday, April 13, 2007 6:32 AM CDT

We made a surprise visit to see Squirt and Nugget yesterday after school. They had just been moved from the house to their new home in the barn. They have a horse stall all to themselves. Both birds had grown quite a bit. Squirt (the duck) seemed to enjoy the attention, but Anna said, "Nugget forgot who I was." (He didn't really want to be cuddled anymore.) After that we made a short trip to the new Stars and Stripes park. It seemed like such a "normal" day. We continue to be amazed and blessed by Anna's good health. She still has moments where she complains of feeling sick, but overall she is better than she has been in a LONG time. We don't take these days for granted because we know things can change very quickly. So we will say, "Thank you Lord for another day together!"
Love,
Marlo

Thursday, April 12, 2007 8:17 AM CDT

Audra stayed home again with us yesterday, but the doctor said it was just a cold/ear infection. When a child has a low fever for several days most people blame a virus. I worry about cancer. That's how Anna's started--a low fever that wouldn't go away. So this week I was thankful for Audra's sore throat. She is back at school today just in time for her second grade musical performance.
Anna had labs yesterday, but they didn't get enough blood to run the AFP so we will wait until Monday to get that. She has chemo on Monday and Tuesday of next week.
Yesterday Anna was playing with her baby doll. She told me she was taking it to the clinic for chemo. I asked her why her baby needed chemo and she said, "Oh, she's sick. She ate too much candy." I told her that you don't need chemo unless you have cancer and she said, "Oh yeah, she has cancer too." Then she had me play the doctor and the nurse. After I hooked her baby up, Anna sat in a chair to read some magazines. She knows the routine. I couldn't decide if that kind of play was funny or sad.
Love,
Marlo

Memorable quote:
"I like the way you smell when we go to church."
(Anna to Mommy while getting ready for Easter services)

Tuesday, April 10, 2007 8:42 PM CDT

"But I will keep on hoping for you to help me; I will praise you more and more." (Ps 71:14)

Anna and I stayed home with Audra today. Will seemed to enjoy his field trip to the zoo even without us there. He woke me up at 4am this morning asking when it would be time to go! Tonight when I asked him what his favorite part was, he said, "Lunch".
Anna's surgery has been moved back one week. She is taking a certain drug that affects the vascular system. (It's supposed to cut off the blood supply to the tumor.) They want to wait two weeks after she gets her next dose before doing surgery to allow time for the drug to clear her system. That means I won't be celebrating my birthday in the hospital this year. I am hoping to get there and back before the end of school. I missed the last few days of school last year. It's such a busy time.
Love,
Marlo

Monday, April 9, 2007 8:33 PM CDT

We had a great Easter Sunday. Today I was "busted" for eating Anna's marshmallow bunny. (I thought she didn't want it!) I ended up stealing Jacob's bunny to pay Anna back. Now he says I "owe him". I guess I better stay out of the candy!
Audra woke up sick this morning with a fever. She has been in bed all day. It wasn't bad having her home today, but tomorrow is Will's Zoo field trip so Mrs. Reaves may be short one chaperone.
We haven't heard any more from Delaware. We don't know if Anna's continued drop in AFP will affect the surgery date or not.
Love,
Marlo

Friday, April 6, 2007 10:02 PM CDT

We just got home from the Easter musical at church. Anna loved it. She kept saying "This is great!"
I always get choked up during the miracles scene. I want to run up on the stage and say "Touch MY daughter!"
I could really relate tonight to the scene of Jesus in the garden as he cried out, "Please let this cup pass from me!" I have been on my face crying the same thing and yet just as Jesus got up from that place with the strength to face the cross ("An angel from heaven appeared to him and strengthened him." Luke 22:43), so I too have been strengthened time and time again to get up and keep going. Of course my suffering does not compare to his, but I do believe that God allows us to "share His sufferings as to be continually transformed in spirit into His likeness". (Phil 3:10)
I continue to be amazed at the blessings God has for us in these circumstances. He is truly carrying us in his arms. Thank you to all of you "angels" who strengthen us each day--including the stranger at the mall who slipped me a twenty dollar bill this week. (I really didn't think we looked that pitiful!)
Please take the time this weekend to celebrate the real meaning of Easter. Life is a lot more than marshmallow eggs and fluffy bunnies--thank goodness!

Happy Easter!
He is risen!
He is risen indeed!
Love,
Marlo

Thursday, April 5, 2007 11:05 AM CDT

"And so I tell you KEEP ON ASKING..." (Luke 11:9)

And so we keep on asking...
Today was good news! Anna's AFP dropped again this week. We started two weeks ago at 13,900 and now we are at 7,500. This is very encouraging. We have a long way to go to get to normal (under 10), but it isn't going up!

Funny story.....
I took Anna shopping yesterday and she decided it was a good time to play "baby". You know we get enough attention because of her being bald, but when she waves her arms and babbles we get even more stares. I'm glad she doesn't notice!

Love,
Marlo

Tuesday, April 3, 2007 5:35 PM CDT

We were at the clinic from 9-2 today. Our visit was made much more fun by the presence of our beloved "craft ladies". We managed to get 4 hours of chemo in between crafts, puppet shows, and egg hunts. Anna is feeling pretty yucky right now--headache and low grade fever. I remember her feeling bad on the second day of chemo two weeks ago and then the next day she was riding horses. So, I am hopeful that she will perk up soon.
One year ago Anna and I celebrated Easter in the hospital chapel. We are looking forward to being at our own church this year. If any of you would like to attend our Easter service, our choir is doing a drama/musical called "The Lamb". There will be performances Friday night at 7:30 and Sunday morning at 9am and 11am. Please join us! (Northwest Baptist Church, 3030 NW 23rd St., OKC)
Love,
Marlo

Monday, April 2, 2007 5:33 PM CDT

We were at the clinic from 10-3 today and will be back there bright and early tomorrow. Today was the Avastin, which hasn't seemed to bother Anna at all. She is downstairs with everyone (my kids plus the two neighbors) playing "restaurant". I would prefer something that didn't involve so many small plastic objects, but I'm glad they are having fun (and NOT watching SpongeBob!)
Jerome called from Delaware and said that the surgeons were optimistic about being able to get this tumor (they are ALWAYS optimistic). He said that they would like to schedule the surgery around the chemo so they have tentatively set a date for the week of April 23rd. (Somehow I knew I would be spending another birthday out there.) That means we will be going back two months after we left there. I am relying on God to renew our strength to do it again. Anna recovered beautifully from the surgery in February, but it is still very hard on all of us. I am thankful for another chance to get rid of this cancer once and for all. We have tried SO MANY times, it is hard to get our hopes up---but we DO---every time. SO, we will look forward to seeing our Delaware friends once again. (Every time I leave there I think it's the last time I will see those people:()
Love,
Marlo

Sunday, April 1, 2007 7:27 PM CDT

We have had a good weekend. Jacob didn't win the spelling bee, but he was one of only 5 fifth graders in the competition (out of 40). Most of the kids were 8th graders. We are very proud of him!
Will got to spend the afternoon at his buddy's house. He earned a dollar for eating part of a leaf so he was happy.
The girls spent the afternoon with another friend. When we went to get them they were both dressed up in hats, jewelry, and boas having a tea party. They had also applied their own make-up---WOW! It was such a beautiful sight! They invited us to join them, but Anna told me that Jacob was not a very good tea-party person because he took too big of sips. Thank you K and S for being so very entertaining!
Today we spent all afternoon in the front yard. The kids had a lemonade stand and we taught them how to play croquet. We tried to wash the cars, but had a few too many helpers. They also enjoyed playing "taxi" with Anna's Dora jeep. Anna said, "This is a great summer day!"
We will be spending the next two days at the clinic getting chemo (at least 5 hours a day). Hopefully this round will go as well as the last one.
Love,
Marlo

Friday, March 30, 2007 9:33 PM CDT

I talked to Delaware this afternoon and the surgeon there is ready to go back in and get this new tumor. Of course it's much harder for us to get ready to do that again. We are hoping to be able to wait a few more weeks. What they are doing has the very scientific name of "cherry-picking" (taking out tumors as they come up). We have no way of knowing if this is the last tumor, or if there will be more.
We did have some good news this afternoon to take our minds off of surgeries. Jacob was accepted into the school we had applied to for next year. He had been on the waiting list, but we were hopeful that he would get in. So in the midst of torential rain and tornado watches I went out and got pizza, a balloon, and a cake so that we could have a party to celebrate.
Love,
Marlo

Thursday, March 29, 2007 3:42 PM CDT

"Be very careful never to forget what you have seen the Lord do for you. Do not let these things escape from your mind as long as you live! And be sure to pass them on to your children and grandchildren." (Deut 4:9)

You may wonder why I share so much of our lives in this journal. One reason is that it helps me to have a place to express my feelings (cheaper than seeing a therapist!) Another reason is so that my mom and sister won't need to call every day :) But my favorite reason is so that I can have a record of the way God has carried us through the most difficult of circumstances. I want to be able to pass that record on to my kids someday. Trust me, they have NO idea of all that goes on.
Today Anna had her first day of school! When we went to drop Will off for kindergarten, Anna said, "I want to pretend this is my school." So we went in and joined Will's class for circle-time and center-time. When the class left for an assembly, Anna wanted to stay in the classroom and explore--so we did. Thank you Mrs. Reaves for letting us visit.
There was one little girl who was very interested in Anna. She had obviously heard about her. "Is that the sick baby?" (Yes) "Is she better now?" ( Well, she feels good today.) "Good. Because I thought she was going to die!"
Love,
Marlo

Wednesday, March 28, 2007 6:16 PM CDT

Jacob and I toured the Oklahoma Medical Research Foundation today as part of the Putnam City Jr. Scientist Day. I had been looking forward to going, but wasn't sure I was going to make it this morning. My babysitter had to back out at the last minute, but fortunately my friend MaryAnn had called me last night and said, "If something happens, call me." So I called her at 7:15 this morning and she was there by 8:30. Meanwhile Audra missed the bus so I had to call her grandfather to pick her up. Then Anna woke up and she had wet the bed (MY bed). I was a little frazzled, but we made it to the meeting spot in plenty of time. We rode the bus with the other representatives because I had NO idea where we were going. It turns out that OMRF is right across the street from the clinic we go to every week. I had just never noticed it! It was very interesting to see the labs where the research is done for cancer and other diseases. We saw a mouse getting an MRI---strange? Jacob got to wear a lab coat and safety goggles. He ended up getting a second lab coat because his got blood on it--not his. He also got to put dry ice in a rubber glove and watch it expand. I'm not sure how that related to the blood experiment, but it impressed him. Now he is bugging me to buy him some dry ice.
We got some good news today about Anna's AFP. It went from 13,000 to 10,000 this week. The MRI showed a tumor on the ligament between her stomach and her liver. If the chemo had not shown some ability to control the tumor's growth, we would possibly be headed to surgery very quickly. Now we have some time to plan our course of treatment. The location of this tumor could explain some of Anna's GI trouble/pain.
Thank you to everyone who continues to bless us--and a special thank you to Mary Ann for letting me enjoy the day with Jacob.
Love,
Marlo

Tuesday, March 27, 2007 9:08 AM CDT

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." (Is: 41:10)

Another child died too soon. Our friend Matty left his "earth suit" behind Sunday night. (www.caringbridge.org/visit/matty) Please pray for his family as they are the ones with the pain now.

I have seen many different responses people have when their child dies. There is no one right way. Some have tried to make something good come out of their experience. Some just try to keep breathing. This weekend one mom carried on with a fundraiser that she started five years ago with her amazing son Fletcher. She helped raise $55,000 for pediatric cancer research. Thank you Gail for not giving up and for helping families like ours.

Love,
Marlo

Sunday, March 25, 2007 8:57 PM CDT

"God blesses you who weep now, for the time will come when you will laugh with joy." (Luke 6:21)

We have had a full week of laughter. We went to a ranch in Perkins last Wednesday where they were nice enough to give the girls a duck and a chick. When we got them home, I read the instructions and the first sentence said, "Live poultry can be a source of potentially harmful microorganisms..." Then Richard reminded me that we are not supposed to get any new pets for the first year post-transplant. SO, on Thursday we took Nugget and Squirt to their new home at the Boys Ranch, where they joined the traveling petting zoo. Audra is still talking about baby ducks, but Anna seems to have moved on to other things. The girls also enjoyed riding horses at both places. They are ready to move to the country. Thank you to everyone who made Anna's farm wish come true!
On Friday we drove to Wichita to see my family. They kids had a great time and weren't ready to come home today.
So far this chemo has been very easy to manage. We'll go for labs on Tuesday to see what it is doing to her counts. We still haven't seen a report from the MRI. We are not anxious to rush back to surgery so I guess ignorance is bliss. The longer this goes on, the less I want to know numbers and test results. If Anna is eating and playing---I'm good. This time last year we were in the hospital for a MONTH. I am SO thankful to be enjoying spring this year.
Love,
Marlo

PS. Check out the new photo page.

Thursday, March 22, 2007 11:04 AM CDT

Quick update from Richard again: Marlo hasn't had a chance to update because Anna is wearing us all out! (in a good way). She seems to be going at full steam this week. Marlo, Audra and Anna spent most of yesterday at a real live Oklahoma farm and even brought home a baby chick (appropriately called "Nugget") and a baby duck (called "Squirt"). They are supposed to be off to the Boys' Ranch Town today for more outdoor fun. We are praying hard that this chemo will be mightily effective on this cancer but it sure doesn't seem to have slowed Anna down much (which is, I think, a good thing).

Thanks for checking in.

Tuesday, March 20, 2007 4:23 PM CDT

We are back home. I thought Anna was going to sail through this new chemo, but she just woke up from her nap feeling sick. Hopefully it won't last long. She did great in the hospital. It was pretty uneventful. We did have a visit from the OU gymnastics team this morning. I tried to get them to do some flips down the hall, but they said they couldn't do it in their jeans.
Anna's hollering for me so I gotta go.
Love,
Marlo

Tuesday, March 20, 2007 10:46 AM CDT

Another quick update from Richard:

Anna had a pretty good night, is finishing up the chemo this morning, and should be discharged about 1:00 this afternoon. This chemo is usually done outpatient in the clinic and our next dose is set for 2 weeks from now. Please pray that it would be mightily effective on this cancer. We don't have definitive MRI results yet but they did see disease -- we're praying it is not in her liver. This new liver has done so well for her, I just hate to see it corrupted. We're also praying for her counts to stay good through this chemo. If her counts stay good enough, we can avoid the daily shots of neupogen, which boosts her white cell production. There is almost nothing that causes her as much anxiety as those shots. We think that they are actually fairly quick and painless but they really really upset her (and rightly so -- what child likes shots?) This chemo is not "supposed" to bring her counts down low enough for the shots, but neither was the last chemo we tried and it did every time.

Still in need of that miracle -- thanks for praying and checking in,
Richard

Monday, March 19, 2007 3:21 PM CDT

Quick update from Richard:
MRI went smoothly this morning. We don't know any results yet. We also don't have a new AFP yet. Whatever it is, we are just trying to establish a baseline for this new treatment. The first of the 3 meds went in this afternoon and now we have to wait until tomorrow for the next 2. Then back home! Anna is doing okay, munching on snacks and watching SpongeBob. Marlo's mom is coming down tonight to take Will back for the week. Jacob is in sports camp all week and Audra is looking forward to some "girl time" with Mom and Anna.

We are really praying that this chemo would be really effective on the cancer but that we could avoid some of the really harmful side effects. Anna's been doing so well since the surgery last month, I hate to knock her back down again if it isn't going to do any good.

Thanks for checking in.
Richard

Sunday, March 18, 2007 9:52 PM CDT

Quick update:
We will be admitted tomorrow morning for chemo and an MRI. Anna will not be able to eat until after the test so pray that we will get an early time and not have to wait all day. We are planning to spend the night and get the rest of the chemo first thing Tuesday morning. There are hundreds of potential side effects. Pray that she will not suffer the worst of them. She had a great day and is feeling good, but she confessed to being a little scared tonight.
Love,
Marlo

Saturday, March 17, 2007 8:53 PM CDT

"Mom, is it going to be a long time before I grow up?"
"Yes, why do you ask?"
"I want to be big so that I can live on a farm."

In case I haven't mentioned it, Anna aspires to be a farmer's wife. (How about it Lynda T.? Any chance we could visit the Ranch this week during Spring Break? )

We went to the park today and took pictures. A big thank you to Ali Parker and my friends at Kirkland for giving us a photo shoot. It was a beautiful day and Anna was feeling good. The session started out a little crazy. Right after we got there Richard and I had to rush Anna behind a bush to pee. While we were gone, one of Jacob's molars fell out. We returned to find Jacob with a wad of bloody kleenex hanging out of his mouth. I didn't expect much after that, but it turned out okay.

We were SO thankful to be able to take a picture of all four kids today. It was exactly one year ago that we kissed Anna goodbye when she was dying of an aneurysm. It was also one year ago that they were able to stop the bleeding and save her life. (See the journal history if you don't know what I'm talking about.) This year, the good and the bad, has been a gift. We celebrated tonight at a Japanese steakhouse. The kids loved the show--especially the fire. Will and Anna kept asking our chef to make the fire over and over again. Anna said she wants to eat there every time we go out to eat. (I don't know who she thinks is going to pay for that!)

Love,
Marlo

PS. We also celebrated with the BIGGEST and fanciest cheesecake I have ever seen. Anna thinks it tastes even better than it looks! Thank you Rebecca for making it for us.

Friday, March 16, 2007 8:17 AM CDT

"Be joyful in hope, patient in affliction, faithful in prayer." (Romans 12:12)

We are really enjoying these spring days. Yesterday someone said, "What you are going through is so hard." I replied, "But today is good!" I have stopped worrying so much about what WILL happen and instead I am trying to focus on what I have right NOW. I'll deal with tomorrow when it gets here. Jesus told us to live that way, but I am STILL learning HOW to do it.

Tonight you can see one of our friends from the clinic on TV. Brian has neuroblastoma. His dad is a trucker and they were chosen for a show called "Trick My Truck". (I think it's like Extreme Home Makeover for trucks.) Their show will be aired tonight on CMT.

Love,
Marlo

Tuesday, March 13, 2007 9:09 PM CDT

The clinic appointment went okay. I didn't realize that this was such a long test. We had to get the injection at 1pm and then wait two hours before the scan, which took another hour. Anna was great and only threw one fit when I made her go to the bathroom. ("I'm never going to the bathroom again!") Luckily Kay and Arlene were in the clinic with all of their St. Patrick's Day paraphanalia. They made the time go by fast. Anna enjoyed green cupcakes and candy while she painted a self portrait. We met with the doctor and were approved to start chemo on Monday. We will be admitted on Monday so that they can order an MRI and we will be discharged after her chemo on Tuesday. We will enjoy these last few "feel good" days this week!
Love,
Marlo

Tuesday, March 13, 2007 6:53 AM CDT

"I will wait for your mercies in the presence of your people." (Ps 52:9)

We head back to the clinic this afternoon for labs and a bone scan. I have REALLY enjoyed our week "off". I have a couple more funny stories for you.....

*Two nights ago I was getting Anna ready for bed. She has stopped taking naps so we are trying to get her to bed earlier. However, she has develped certain habits that are hard to break. She told me "Daddy said I could have a bedtime snack---and he's the boss of the family." She knew I would say NO! (Those "snacks" add an hour of eating and reading to her routine.)

*Anna has certain words that she doesn't like us to say--for example "stomach". She yells, "Don't say 'stomach'!" I had forgotten this particular little quirk of hers when I chose a hymn to teach the kids. We were talking about sin so I chose a well known hymn along that theme. Unfortunately, it made Anna gag. The song was "Nothing but the blood of Jesus". I forgot we can't say "blood". We were all singing and she was holding her hand over her mouth. We will have to stick with singing her favorite, "Hark the Herald Angels Sing".

Hope you can enjoy this BEAUTIFUL day.
Love,
Marlo

Sunday, March 11, 2007 3:21 PM CDT

Everyone is better today and we all enjoyed going to church together. Jacob, Richard, and Audra have all been sick since my last update. Today we are washing the sick germs out of our house, sheets, blankets, bathrooms, etc. On Friday I was trying to take care of Jacob, Richard, and Anna. Anna needed me to change the channel and was "put out" that I didn't come right away. She asked, "What were you doing anyway?" I told her I was outside washing the throw up off Will's comforter. She said, "Well, when you are done cleaning the throw up, could you get me something to eat?" I'm glad her appetite wasn't affected! She enjoyed attending TWO birthday parties yesterday. She has lots of energy (no naps) and is eating all the time. It seems the farther away we get from chemo, the better she feels. I HATE starting up again, but we are so thankful that the new regimen is outpatient. (In case you don't know, some chemos have to be given in the hospital and some can be given in the clinic.) She has a bone scan on Tuesday and hopefully an MRI later this week. We will start the chemo at the end of this week or next Monday. Thanks for praying for us.
Love,
Marlo

Friday, March 9, 2007 10:37 AM CST

I'm so glad we didn't put off coloring the Easter eggs until today! Jacob woke up in the middle of the night violently ill. He managed to lean over the rail and kept the mess out of his bed, but got it all over Will's bed and the floor. After we moved Will and cleaned everything up, my wonderful romantic husband said, "You're the one I want to clean up vomit at 3am with." (I know he ended his sentence with a preposition but it was the middle of the night.) I said, "YOU'RE the one I want to clean up vomit at 3am---forget the 'with'!" The next time Jacob threw up, I actually pretended to be asleep! I won't win "Mother of the Year" for that one, but did I mention that I have a WONDERFUL husband? So far Anna and Will are just fine and VERY busy playing. I think they have out all of the cars and groovy girls right now. I'll take Jacob this afternoon for a strep test, but the nurse (and the school secretary) told me there is a stomach bug going around. Luckily it only lasts about a day so maybe we are through the worst of it.
Love,
Marlo

Thursday, March 8, 2007 7:57 PM CST

"But giving thanks is a sacrifice that truly honors me." (Ps 50:23)

Somedays being thankful is truly a sacrifice, but I've found that if I maintain a heart of gratitude, there is always something to be thankful for. The other day I was at the hospital and after I thanked God for the friends I had made there, the only other positive thing I could think of was, "Thank you God that someday I won't have to come here anymore." There have been days I have to drag myself there--not to mention Anna.
We enjoyed the beautiful weather today. The kids have been asking to dye Easter eggs so we went ahead and did that. One of the things I have learned during the last two years is don't put things off until "tomorrow." If you have a nice day, eggs, and some colors--who cares if Easter isn't for another month!
Another big event was Anna's bath. She has been refusing to take one because she says she is scared of the steri-strips on her scar. I put Will in the tub watching SpongeBob on the portable DVD player and I served him breakfast. Well, that was too much for Miss Anna to resist. They were in there for over an hour. After that good soaking, she has lost all but one of her steri-strips today.
Right now she is downstairs with Richard having the last fudgesicle--her new favorite food. I need to go help Jacob study his words for the Bee.
Until tomorrow,
Marlo

Wednesday, March 7, 2007 11:29 AM CST

May the Lord smile on you and be gracious to you. (Num. 6:25)

We were blessed last night through the generosity of a secret friend. I chose The Outback for our dinner date. We used to go there for special occasions, but hadn't been in years. We had a nice dinner with lots to talk about. Near the end of our meal, the waitress told us that someone had paid our bill. Now I've heard of that happening to other people, but it's never happened to us. If that nice person is reading this---thank you very much!!!! Of course we are so curious to know who would do such a thing, but we also know that there is blessing and excitement in anonimity. It was just another reminder that God can (and does) bless us in anyway and through anyone he desires.
Anna and Will and I have had a peaceful morning. They are eating Jason's Deli mac and cheese for lunch. We ate there Sunday after church. Anna LOVES their mac and cheese. She kept saying "I wonder why it's so much better than ours? Maybe it has more cheese." Finally I went to the manager and asked him how they make it. It turns out that it comes in individual frozen packets. He sold me 10 of them so now we can have it at home!
Love,
Marlo

Tuesday, March 6, 2007 4:40 PM CST

There have been many emails back and forth today as we try to finalize a plan. Anna will have a bone scan on Tuesday to see if there is any reason there for her back pain. We will also try to schedule an MRI before we start chemo. One of the drugs can cause perforations in the stomach (which Anna has had before) so we will wait a little bit longer to let her recover from her surgery. Of course this means the tumor is getting bigger, but maybe it will show up on the MRI--so it could be a good thing that we are waiting! I will trust in God's timing and enjoy a few more chemo free days.

Today after I dropped Will off at school Anna said she felt good enough to go look at clothes (earlier in the morning she refused). It was the first time we had been shopping in months. She picked out a dress (but wouldn't try it on) and some white gloves. Then we went to the baby section to look at strollers. (Ours is falling apart after 10 years of daily use.) Most people don't buy strollers for their almost five year-olds, but Anna uses hers like a wheelchair. While we were browsing Anna told me "Oh yeah, I took off my underwear because they were bothering me." WHAT? WHERE? "At home" was the answer. Then she lifted up her dress (she only wears dresses) and showed me (and the other shoppers) her naked self. Oops! Time to go home...

Tonight I have a date with my husband thanks to his parents who are staying with the kids. They thought we might need a chance to talk, and I agree!
Love,
Marlo

Monday, March 5, 2007 2:10 PM CST

Update: I must confess that Anna did have some help with "her" painting. I wasn't in the room, but from what I understand, a local artist brought the supplies to her hospital room. The flower was already sketched on the canvas. Anna, Audra, and Will painted the flower. I don't know how much help they had doing that. I do know that there is permanent paint on Anna's nightgown and on Audra's best dress! Hanging underneath the painting was a picture of Anna working on it in her hospital bed. Anna actually prefers drawing people!

I know everyone is waiting to hear how the art show went. Let's say that it did not go as expected! Miss Kelley came to get the other kids as planned. She even had magnets on her car that said "Miss Kelley's Limosine Service". Great! Anna woke up from her nap hurting. I thought that it would pass by the time we were ready to go. It didn't. I thought it would pass by the time we drove to the clinic. It didn't. The limosines were lined up to go and we had to walk past them back to our car. Anna was hurting too bad to care, but I did! I had a pity party all the way home. When we got home, Anna went to the bathroom and felt better so we all loaded up (Richard's folks were there by that time) and drove back downtown. We arrived fashionably late---minus the limo. They did roll the red carpet back out for us, but it was cold and Anna wouldn't walk. We set her little butterfly chair up next to her painting and people came by and oohed and aahed while she munched on the our'dourves (ie. "fancy food"). She lasted almost an hour before the pain started again and we rushed out before the final bid. I still haven't found out how much her painting went for!
Today we had another big event at the ASTEC school. We got there in the middle of the "dare" portion of the program. Several of the kids and teachers had agreed to do certain things if enough money was raised. We watched several boys get their heads shaved and legs waxed. I think Will found it very interesting. Anna just kept saying, "Now, WHY are they doing that?" It was hard to equate head shaving with paying doctor bills. They had a presentation at the end with a big check and more importantly (in Anna and Will's opinion) a basket of toys for our kids.
Pray that we will find some relief for this tummy/back pain. I think we need another visit with the GI. Until then, someone has to sit next to Anna for most of the day rubbing her back. We are getting closer to making a decision about chemo. I think we will be trying some pretty new stuff--paving the way for others I say!
Love,
Marlo

Saturday, March 3, 2007 6:36 AM CST

"God is our refuge and strength, always ready to help in times of trouble." (Psalm 46:1)

Tonight is the big art show. Anna has been counting the days. Now she is trying to choose a dress. (Of course she doesn't want to wear the one I picked out.) This event benefits the Oklahoma Children's Cancer Association. If anyone would like to attend, it will be at the OKC Museum of Art from 7-9pm. Tickets can be purchased at the door. Anna is one of 24 artists from the Jimmy Everest Clinic who have submitted paintings. The paintings will be auctioned off tonight. She will get to ride in a limo from the clinic to the museum, then walk (or be carried) down the red carpet. What fun! Hopefully she will feel well enough to enjoy it--her pain seems to come and go.
Thanks to Miss Kelley who is taking the other kids out to eat and to their basketball awards program. She will make it a fun night for them as well (if only she drove a limo!)
We want to also thank ASTEC charter school for their hard work this week. Anna and I are looking forward to attend the closing program of their SPAMM week on Monday.
Love,
Marlo

PS. New pictures on the photo page....

Thursday, March 1, 2007 9:23 PM CST

"Why am I discouraged? Why so sad? I will put my hope in God! I will praise him again--my Savior and my God!" (Ps. 42:5)

Well, we made it through the meeting. It was a LONG meeting with lots of information, but no decisions made. We looked at the available chemos and the pros and cons of each. The combination that would probably do the most to fight the cancer (ie. the strongest) is also the one that would cause Anna to be hospitalized for weeks---a hard choice. Because she has had so much chemo, there are several drugs she has "maxed" out on unless we want to do permanent damage to her kidneys or heart. We asked the doctor what he would do if it were his daughter and he told us that he really cares about Anna and every decision that he has made up to this point has been as if she were his daughter. (Of course I "lost it" when he said such nice things.) We have been a bit frustrated in the past with his reluctance to try "new" drugs on Anna. Now we see that he really does not want to hurt her--thus he wants to stick to "proven" drugs. We are so far off the "road map" that we have to consider alternate therapies. After we came home he did email us with another suggestion that includes a different drug. We will be investigating this new alternative. We would LOVE to be the ones to find something new that works on this type of tumor. We brought up the option of stopping treatment and he said that that has always been an option, but his comments were all geared toward treatment--not stopping treatment. He thinks that the tumor is still somewhere in the surgical bed and if so, it should be resectable. It has never spread to other parts of her body, but keeps appearing in the same general area.
So we try to prepare ourselves for another round in this fight. (Rocky Balboa has nothing on us!) Anna said something today that broke my heart. She was with a friend while we were in our meeting (thanks Shawna) and she told her that she had had surgery and that they had got all the weeds. It made me realize that she doesn't know the cancer is still there. I feel so bad because she has done everything we have asked her to do during the last two years and it hasn't worked. Saturday was the two year anniversary of her diagnosis. I wanted so badly for her to come home cancer free.
God is fair. Life isn't.

*Pray for Anna's back pain to ease up. I think it's GI related, but when your kid has cancer you never know for sure.
*Pray for her spirit as she continues to live her life. It is definately not a normal life for a four year old.
*Pray that we will make the right choice of chemotherapies.
*Pray that she will feel well enough to attend the art show Saturday.

Love,
Marlo

PS. Thank you for praying for Matty. He was having his best day in weeks.

Wednesday, February 28, 2007 9:47 PM CST

I am so glad the interview is over. It was live at 4:18 on channel 9 for those of you who missed it. I had no idea that it would be live, but then I thought, "Who watches the 4 o'clock news?" and that took off some of the pressure. They told me the two questions that they would be asking so I was somewhat prepared. Then Alex threw in "So what is the prognosis?" I about choked when he said that. I had been praying all day that God would give me the right words to say and so at that moment he did. I just said that no one with this has ever had two transplants (yes, Linda I know Andrew did, but wasn't his because of liver failure and not tumor?). I also said that there is no guidebook and we are just making this up as we go along.
Thank you for praying for our meeting tomorrow with the oncologist.
Thank you to the Hubbards for sharing your home, family, and food with us because you thought we needed cheering up.
Thank you Lydia for making Jacob feel special with the signs and balloons.
Thank you Dandy for taking Will after school.

I have so much to be thankful for.

Love, Marlo

PS. Pray for our friend Matty. www.caringbridge.org/visit/matty

Tuesday, February 27, 2007 9:04 PM CST

Update Wednesday--Jacob was the runner up in the spelling bee so he gets to go on to the next level! We are very proud of him. It is SO nice to have something good happen. Now if I can just get through this interview....I'm better at writing than speaking!

Tuesday--
I don't want to leave you on a sad note so I thought I would write to tell you that life goes on here in the Salamy house. Anna is downstairs having cheesecake with Richard. The other kids are in bed. Jacob is probably still awake worrying about the regional spelling bee tomorrow morning. Tomorrow afternoon I am supposed to take Anna to the TV station for an interview about the fundraiser. Thursday it's the big "talk" with the oncologist as we discuss our options and decide what to do. Thursday night is Jacob's 5th grade play. Saturday we have three basketball games, the awards ceremony and Anna's art show. I don't have a lot of time to fall apart.
Last night I was trying to discuss our situation with Richard in between basketball practices. We were in the kitchen trying to talk for five minutes. We had to shoo the kids out several times. When I got in the car with Jacob to go to practice he said,
"Are we bankrupt?" That's what he thought Richard and I were talking about! I guess that was the worst thing he could think of.
Thank you for all of the encouraging notes in the guestbook. I really appreciate them.
Tired,
Marlo

Tuesday, February 27, 2007 10:49 AM CST

"Lord, remind me of how brief my time on earth will be. Remind me that my days are numbered, and that my life is fleeing away. My life is no longer than the width of my hand. An entire lifetime is just a moment to you; human existence is but a breath. We are merely moving shadows, and all our busy rushing ends in nothing. We heap up wealth for someone else to spend. And so, Lord, where do I put my hope? My only hope is in you." (Ps. 39:4-7)

Those verses aren't just for Anna, they are for me (and you). If only we could have God's perspective of eternity--it wouldn't matter if we lived 5 years or 80 years here on earth. Unfortunately we cling so tightly to our short time here on earth that anything less than what we consider a "full" life is devestating. Beth Moore said, "As good as life on earth can be at times, clinging to this ride is like refusing to get off the barge that takes you from the parking lot to the gates of Disneyland." We rode that barge back in November and being from Oklahoma, we thought it was pretty fun. What if we had stayed on the barge instead of getting off and going through the gates of the Magic Kingdom? Think of what we would have missed out on! I was able to discuss this with Will and Anna this morning and even they could understand that you don't want to cling to the barge. We don't know what Heaven will be like so that makes it scary to us. I may not know all that is store for us, but I do know what WON'T be there--sickness, hospitals, death, crying, stress, evil, and robbers (Will's greatest fear). The worse things get here in this life, the more I long to get off this ride and onto better things.
Our thoughts are once again focused on death as we received bad news about Anna's AFP yesterday. It is 6,532 (up 2,000 in 6 days). We have some TOUGH decisions to make. Do we keep putting Anna through futile treatment or do we stop? Is there any hope for healing in this life? Today Anna said, "Daddy doesn't have to pray to ask God to make my back stop hurting because God can make it stop today." I believe he can, but since he hasn't, it is HARD to believe he will. I know He has been glorified in her sickness. I wish He would be glorified in her healing.
*Pray for endurance for us. We are tired of fighting.
*Pray for wisdom and direction from God as to what to do next. (He promised that if we ask for wisdom, he will give it.)
*Pray for Anna to be able to enjoy this day.
*Praise for ASTEC charter school who is having their fund raiser for us this week. The money will be used for medical bills and to pay for our recent trip. We are so thankful that GOD has supplied all of our needs and we have never lacked for any good thing.
Hurting,
Marlo

Happy moments, PRAISE GOD.
Difficult moments, SEEK GOD.
Quiet moments, WORSHIP GOD.
Painful moments, TRUST GOD.
Every moment, THANK GOD.

(Rick Warren)

PS. The picture of Richard and Anna was taken in the hospital the night before her surgery.

Sunday, February 25, 2007 5:38 PM CST

We are home! We left Baltimore just as the storm was rolling in. In fact they had to de-ice our plane, but we made it out. You will feel much safer knowing that the security guards caught me trying to sneak bottled water and pudding through the check-point. I was standing there holding Anna (because she was refusing to walk) trying to explain why I needed to take pudding on the plane (for Anna's pills). They let me go with just a warning this time.
We arrived home to streamers, balloons, banners, and a red/white carpet. Thanks to our secret pals who arranged that little welcome home surprise. We also had a cheesecake so it was a real party. The party girl has crashed on the sofa. Hopefully she will get rested up before we hit the clinic tomorrow. I wish we had scheduled a day off, but we will be there first thing for labs and a GFR (kidney function test).
Thanks for praying us home.
Love,
Marlo

PS. To Chemo Angel Holly: We've never had a chemo angel. We are glad that Matty shared his with us. Thanks for the package and the sweet cards.

Sunday, February 25, 2007 7:24 AM CST

Sunday Morning -- everything seems to be a "go" for travel today. Marlo, Anna and her mom are currently enroute to the airport. They are scheduled to leave at 10:00 EST and be in OKC this afternoon at 1:30 (CST). They are racing some winter weather out of Baltimore but their flight still shows to be on time. Please pray for safe, uneventful travel and a good connection in St. Louis. They only have 30 minutes for a plane change. Sometimes, it takes 30 minutes to get Anna packed up and into her stroller!

Richard

Friday, February 23, 2007 9:58 PM CST

A quick update -- we have changed our return home date to Sunday. Anna had a low fever tonight (Friday) and had not felt well all afternoon. Since we are just one week out from surgery, we felt more comfortable giving Anna one more day of recuperation before making her travel. The only problem is the weather on Sunday is not as good as it will be tomorrow. So please pray for no travel delays on Sunday, no more fevers for Anna, and a safe return home on Sunday.

Richard

Friday, February 23, 2007 3:32 PM CST

We are headed home tomorrow. We will leave the RMH at 6:45am and get home in the early afternoon. Pray for Anna. She gets a little better each day, but is still very sore from the surgery. I hope the travel is not too difficult for her. I'm thankful that my mom will be there to help us back to OKC before she gets on a flight back AZ. There is another winter storm headed this way. We are hoping to avoid it by going through Baltimore again. We found out last time that "the best laid plans of mice and men go oft astray." (My journal is upstairs so I will have to quote things I learned in sophomore english class.)
Love,
Marlo

Thursday, February 22, 2007 5:04 PM CST

Quick update...
We are back at the RMH. Anna and Grammy are playing pool. (This after she told me she was "never going to walk again!")
We still don't know when we will be able to get a flight home. Hopefully soon.
Love,
Marlo

Wednesday, February 21, 2007 9:23 PM CST

We are anticipating being discharged tomorrow to go back to the RMH. They also said that we don't need to wait around until Monday, but that we can leave when we are ready. We are trying to arrange a flight for this weekend. We are very glad that we will be home soon.
I have had a few hours to adjust to the earlier AFP news. To clarify...it has not gone up. It just did not drop as much as we anticipated. There is still some hope that it will continue to go down. It is all very reminiscent of this past summer--all the same feelings come rushing back.
Instead of thinking about it, I'm going to think about what I am thankful for...
*Anna's quick recovery from surgery with no complications.
(She still has the back pain, but she had that before surgery.)
*The box of goodies from the office staff at McAfee and Taft. (Anna has held the purple pillow on her tummy to help with her coughs. She makes sure she has it at all times.)
*Normal liver numbers. (They were elevated before the surgery.)
*Nurses I can trust.
*My mom being here to read books to Anna so that I can take a break.
*All of the helpers in OKC who have been taking care of the kids. (Lydia--thanks especially for the bowling outing. I will be praying for you tomorrow as Nick has his MIBG.)
*The guestbook entries that are so encouraging.
*Jesus Christ who continues to carry me when I am weak.

Trusting,
Marlo

When I am down and O my soul so weary,
When troubles comes and my heart burdened be,
Then I am still and wait here in the silence,
Until you come and sit awhile with me.

You raise me up so I can stand on mountains.
You raise me up to walk on stormy seas.
I am strong when I am on your shoulders.
You raise me up to more than I can be.

There is no life, no life without its hunger.
Each restless heart beats so imperfectly.
But when you come and I am filled with wonder
Sometimes I think I glimpse eternity.

(You Raise Me Up, Selah)

I will leave you with a funny doctor story.
The pediatrician was asking me about Anna's poop. I told him that it looked "funny". He said, "You mean like cartoon characters?"
Good one Dr. Raab!

Wednesday, February 21, 2007 9:24 AM CST

So discouraged this morning. Anna's AFP didn't show the big drop we were all expecting if the tumor was all gone. This means that there is still disease in her body somewhere. We really don't know what to do next and frankly we are tired of searching for a cure. I was on the St. Jude site looking at their clinical trials and I thought I CAN'T do this anymore.
Right now we just want to go home. If she doesn't have any complications this week, they want us to spend the weekend at RMH, come in for an outpatient visit on Monday, and then we can go.
I was crying out to God early this morning and he showed me the same words that I wrote down on this day two years ago, "Don't be afraid, just TRUST me." (I'm trying Lord. Some days it is harder than others.) My prayer for Anna are the words of Jairus, "Lord, come and place your hands on her. Heal her so that she can live."
Knocked down,
Marlo

Tuesday, February 20, 2007 8:39 AM CST

My scenery keeps changin' and sometimes it's hard to view,
but you've let me see so much since I've known you.

But I headed to where it seemed like nowhere.
You told me you'd come.
You told me you'd meet me here.
And you were here to say,

Welcome to Delaware
I know you've traveled far
and it's a lot colder here than what you're used to.
And I know, that in the winter time
things aren't what they used to be.
So all you really have here now is me.

So I settled here and that is that
for you to show me who I am.
You had to take me to a place I'd never been.

And all the things I dreaded most
about the things I'm seeing
have now become the sweetest part of me.

Though I headed to where it seemed like nowhere
I knew you would come
I knew you would meet me here.
And you were here to say

Welcome to Delaware
I know you've traveled far
and it's a lot colder here than what you're used to.
And in the winter time
things aren't what they used to be.
All you really have here now is me.

(Welcome to Delaware, by Watermark)

Yes, that is a real song that a friend shared with me when we came here back in '05. God has truly taken us to places we've never been, but he has gone before us each time.

Anna's tummy is waking up very slowly. She is able to drink water now and we are waiting to see if she can have toast. (I don't think she will really eat it, but she likes to know that she can have things if she wants them. She HATES to be told "no.") I made her walk a few steps last night. (She also HATES being "made" to do things.) We had a major battle this morning. She needed to pee so I put her on the bedside commode. She wanted me to put her back in bed so she could use the bedpan. When I refused, she yelled, "I'm never going to pee ever again!" She held out for a long time, but I finally won that battle. She gives up a lot of control when she's in the hospital so she tries to control what she can.
Love,
Marlo
PS. If you would like to send a free ecard, they will print it out and deliver it to Anna's room. The web address is www.Nemours.org/eCards.
Anna's room number is 3406.

Monday, February 19, 2007 8:38 AM CST

"Praise the Lord; praise God our savior! For each day he carries us in his arms." (Ps. 68:19)

We have many things to be thankful for this morning as God carries us through this. Anna has shown some more improvement. She is talking----very little---but better than nothing. Still no bowel sounds. If things don't wake up down there by tomorrow, we will have to start TPN so that she can have some nutrition instead of just fluids. She needs to get out of bed more today so I asked for the PT to come by and help with that. My mom arrived safely yesterday and Richard is packing up to leave at noon.
I usually don't thank individuals on here because I don't want to hurt anyone's feelings if I don't mention them, but I have a few people who I can't thank personally so I wanted to let them know we appreciated their thoughtfulness...
I want to thank Cynthia for the nice cherry blossom shower I enjoyed this morning. Thanks also for the cookies and for visiting us during the surgery. I hope all goes well for Conner and the new baby.
Thanks to Mrs. Troester's fourth graders and Mrs. Hackett's pre-K for all of the cards they made. Anna's walls are very pretty with all of the valentines people have sent.
Thanks to Deb and Mark for our belated Valentines dinner we enjoyed at Chili's last night. (We took advantage of Grammy being here to babysit!)

We don't have an AFP yet. It was 10,000 before the surgery. I'll let you know when I know something.

Love, Marlo

Sunday, February 18, 2007 10:35 AM CST

Anna still has a low fever, but it's down from last night. She is still "shut down" and not talking to us. We're not sure if it's a physical or emotional problem (probably both). She is less puffy and more alert today so at least there is some improvement to encourage us. Our goal today is to get her up out of bed more often. She has already spent some time is Richard's lap.
My mom is flying in today from Arizona. Richard will leave tomorrow to go back to work and to take care of the other kids. Thanks again to everyone who is helping with them. They sound like they are having a good time.
Love,
Marlo

Saturday, February 17, 2007 4:46 PM CST

We only spent 24 hours in ICU--a new record for us after surgery. Anna's fever went down earlier today, but seemed to be going back up when I left a little while ago. (I came back to the RMH for dinner and now I'm taking a plate back to Richard.)
They tell us Anna is doing very well. To us she seems to have "shut down" since she is not talking and sleeps most of the time. I keep watching for her to "perk up" again. I'm sure she feels lousy with the fever and the incision.
Pray that the fever will break for good and that she will be a little more alert. We are also still waiting for bowel sounds so that she can start drinking.
Thanks for checking on us.
Love,
Marlo
PS. I have to brag on our oldest son Jacob who won the school spelling bee yesterday. Way to go!

Saturday, February 17, 2007 9:30 AM CST

We are spending a quiet(?) day in the PICU. Anna's main problem right now is a fever. They think it is just a typical post-op variety, but they have drawn cultures and are giving antibiotics just to be sure. They just removed her central line, A line, and Foley so hopefully she will be more comfortable. She has been very sleepy since yesterday. We haven't had much interaction with her other than her requests for water--which she can't have until her bowels "wake up". Our nurse today is Kelly. She has taken care of Anna since the first transplant in '05 so she knows us well and we feel very comfortable in her capable hands.
Thank you so much for all of the valentines we got yesterday. I hung them on the walls at 3am this morning so that Anna would see them when she woke up. We feel very loved!
Love,
Marlo

Friday, February 16, 2007 3:39 PM CST

4:30pm EST
Anna is out of surgery and in the ICU -- she is doing well so far. The surgeons were able to remove all the visible tumor and took tissue samples from a variety of places around the tumor (including the liver) in order to take biopsies. We will learn the results of those biopsies over the next several days.

Overall, the docs are pleased with how the surgery went. They didn't need to graft in new vein, didn't have to do any bowel resections, and in general didn't have to do a lot of rearranging. She doesn't have "staples" this time but had her incision glued back together. She doesn't have the painful drains in her abdomen incision. And she is already extubated. We hope to only be in the ICU a day or so before going back to the floor.

We are pleased with how the day went and are thankful to the LORD for all He has done today. We still need to avoid any infections and ICU complications, get all negative biopsy results, and in general -- never see this cancer ever again. So we still need His intervention at each step.

We do need to decide on a follow up chemo and that is still up in the air. But we're taking it day by day so I'm sure we will know the right choice when it is time.

Grace Supplied,
Richard

Friday, February 16, 2007 10:45 AM CST

UPDATE 12:50pm They just told us that the tumor is not in her vena cava as they thought. It is in the mesentery. They will NOT have to do the cadaver vein graft as they planned. At this point they don't know what they will have to resect to get clean margins. Pray for "eyes to see" and for creativity as they re-wire Anna once again.

"All day long I put my hope in you." (Ps 25:5)

We are facing a LONG day. We left our room at 7:20. Anna and I rode in the bed and watched SpongeBob all the way down to the OR waiting area. She was SO brave. We read books and played tickle games while we waited for the "happy" medicine. She was comforted by the thought of me on the table with her during the operation. (She'll never know I wasn't there!)
They opened her up shortly before 10 and so far they are still going ahead with the surgery. We are hoping that means that they didn't see more tumor than they expected. It's really an amazing procedure that they are planning to do. It was more than I wanted to know last night and scared me to death (thus Richard's post instead of mine). Once again we said goodbye to Anna, wondering if it would be the last time we would see her alive. You would think it would get easier, but it DOESN'T.
We have had several visits from hospital friends while we wait. Thank you for praying for us and for the doctors. Some trust in chariots and horses (and doctors) but we trust in the name of the Lord our God.
Love,
Marlo

Thursday, February 15, 2007 9:21 PM CST

Anna has had a great evening except for having her port accessed -- it was tough as usual. But we're reading stories, having snacks, and getting ready to turn in.

We just finished meeting with one of the surgeons about the surgery tomorrow. He explained everything in great detail -- this will be a much more difficult surgery than I thought (though I'm not really sure what I thought in the first place). He ranks it right up there with her previous transplant, which was itself a difficult venture. They will most likely be in surgery all day and then she will be in the ICU. But as much as I dread this surgery, it was really this or nothing else. The chemo we were on wasn't working, there are no other chemos out there that are really effective once you are at the stage we are, so getting rid of the tumor surgically is our last best hope.

As usual, there are lots of things that have to work just right in order for this to be successful. You could consider this our prayer list for tomorrow:
1. The surgeons have been in a transplant surgery until this evening. Pray that they are rested, refreshed and ready for tomorrow.
2. If the surgeons see tumor anywhere else besides where they saw it on the MRI scans, then we are probably not in a position to go forward with this. So pray that the tumor will be confined to where they saw it on the scans. And pray that any miscellaneous free-floating cells will collect themselves on this tumor and be gone once for all.
3. There is more than a minor risk that Anna's kidneys will be damaged as a result of this surgery. Her kidneys are already compromised from all the chemo she is on so we really need the LORD to protect her kidneys.
4. Infection, bleeding, and the usual risks of any major surgery.
5. Peace for Anna -- last time she had surgery, she developed an ulcer because of post-surgical pain and anxiety.
6. Faith to believe that this will be the final cure for Anna.

Thanks to all -- we will update tomorrow as we can but it will probably be a very long day.

Grace,
Richard

Thursday, February 15, 2007 4:53 PM CST

We have been admitted and Anna knows about the surgery. She is very afraid as you can imagine. Pray that she will trust us and the doctors.
Pray for the doctors (Dunn and Savo). They are still in the transplant surgery from early this morning. I can see why they wanted to schedule the transplant for Friday so they would have the next day off. Anna is set for 7:45am tomorrow so they won't get much time to rest.
Anna wore her cowboy boots today. I guess they don't see those much up here because everyone was making a big deal over them.
Love, Marlo
PS. The hospital computer is blocking me from reading the guestbook. I'm sure you are out there though! Thank you to everyone who sent packages and valentines. We had a great time opening them today.

Wednesday, February 14, 2007 9:22 PM CST

We finally arrived at 9:30pm after a VERY long day. They switched Anna's surgery with a transplant that was scheduled for Friday. We are grateful that we will be able to sleep in and relax before checking into the hospital tomorrow afternoon.
During the shuttle ride tonight Anna said, "I'm kinda scared. I don't know if they are going to do an operation or not." You know what I said---"Uh, do you want to watch SpongeBob?" Wasn't that a brilliant thing to say! I can only plead exhaustion after 15 hours of travel.
Anna is very happy to be here, but not so happy that the treasure chest is closed until tomorrow morning. We did have a nice Valentines surprise when we got here--a bouquet of flowers from my Aunt and Uncle in California. Thanks you guys!
We are off to bed. What a Valentines Day!
Love,
Marlo

Wednesday, February 14, 2007 2:11 PM CST

Please pray for a quick and safe trip. They were delayed in Houston this morning. The surgery might be on Friday depending when they arrive in Delaware. Thanks for your love and concern. Happy Valentines Day! -Shawna

Wednesday, February 14, 2007 11:27 AM CST

Marlo called and said that they are stuck in the Houston airport due to the Baltimore weather. Please pray they get on the noon flight to Baltimore. The surgery might be on Friday now, depending on what time they arrive in Delaware tonight. Thanks for your concern and prayers for them. Happy Valentines Day! -Shawna

Tuesday, February 13, 2007 8:33 AM CST

"I cried out to the Lord in my suffering, and he heard me. He set me free from all my fears." (Ps 34:6)

We are enjoying our unexpected day at home. I am VERY thankful that we are not traveling today, but I am a bit wary of traveling tomorrow. We are supposed to leave here early in the morning on a nonstop flight to Baltimore. Then we will have a 1-2 hour drive in freezing rain to get to Wilmington. Pray for safety and for RAIN instead of ICE.
My thoughts today are with our friends whose son Xander has relapsed with neuroblastoma. Please pray for them as they catch their breath and face the future. It is SO hard to go back into treatment. I once told someone that the only thing harder than getting cancer was getting it again. You can visit Xander's family at www.caringbridge.org/ok/xander.

Love, Marlo

Funny Anna story:
Richard has a special time with Anna every night from 9-10pm. It usually involves a snack and lots of books. It is a special time for me too since I get a respite at the end of a long day. On Saturday, Richard was at a Daddy/Daughter dance with Audra. Anna was sad that Daddy wasn't there. I tried to do what he did, but I confess I didn't do it very cheerfully. I was tired and ready for some "I" time. As I was carrying Anna up the stairs she patted my back and said, "I wouldn't trade you for a prettier mommy or a nicer mommy." Of course the implication is that there are prettier and nicer mommies--at that moment I wasn't acting very pretty or nice! I'm glad she wouldn't trade me even when I'm grouchy. I wouldn't trade her for any other four-year-old either.

Monday, February 12, 2007 9:38 AM CST

UPDATE: I just found out that we will be leaving on Wednesday instead of tomorrow. We are trying to avoid a snowstorm that will be going through Chicago tomorrow. We will be on a direct flight to Baltimore and take a shuttle to Delaware. We should arrive around 1pm and we are supposed to check into the hospital at 4pm. Pray that the timing works out and we are not delayed by ice or snow.

Thanks for praying for peace for Anna. We told her about our trip yesterday and she is okay with it. I explained how the chemo had killed the weed, but that it wasn't strong enough to kill the root and that Dr. Dunn would help us get the root out. She asked how, and I told her I didn't know (not technically a lie since I have NO idea how he is going to do it.) Hopefully they can crank up the versed Thursday morning so she won't be anxious about anything!

Today Audra is home with a sore throat. I am going to run her to the doctor's for a strep test. God had already provided care for Anna today from a friend who called last week. (UPDATE: Audra tested negative for strep and the flu. Pray that this virus will run its course quickly. Praise-- that I will be home tomorrow in case she needs to miss another day of school.)

Love, Marlo

Saturday, February 10, 2007 7:21 AM CST

Last night Daddy and Anna were going to spend the evening at home by themselves. Richard told her he would bring her whatever she wanted for dinner. I called him laughing and said, "You'll never guess what she wants." She asked for a piece of strawberry cheesecake from The Cheesecake Factory--only one of the hottest new restaurants in town. He wanted to know how she even knew about that. We had paid a visit to baby Hannah in the hospital and someone had brought Mr. Lance a piece of cheesecake. He was nice enough to give Anna a bite, and from then on she asked for cheesecake all afternoon. I think she ate one-and-a-half pieces by herself. She did top the scales at 33 pounds last night, so maybe we will feed her cheesecake everyday!

If anyone would like to send Anna a Valentine, you can mail them to the Ronald McDonald House at 1901 Rockland Road, Wilmington, DE 19803. We will be flying up on Tuesday to make sure that we get there in time to check in the hospital on Wednesday. We are flying through Chicago and don't want to get stuck in a snowstorm like we did last March.

The other kids know about the trip and seem okay with it. They are looking forward to staying with their Sittie and Pop and to going to their friends' houses after school. Thank you to everyone who volunteered to help with them.
We still haven't told Anna what is going to happen. I think we will wait another day. She HATES the thought of being cut open. I'm not sure how to make that any easier for her.
Pray for :
*Safe/uneventful travel
*Peace instead of fear (for us and for Anna)
*Dr. Dunn's skilled hands and eyes to be able to see and do what needs to be done

"Let your unfailing love surround us Lord, for our hope is in you alone."
(Ps 33:22)

Love,
Marlo

Friday, February 9, 2007 9:04 AM CST

WELCOME TO THE WORLD HANNAH JOY!

I was thrilled last night to be able to be at the hospital with our friends to welcome their new baby girl. Actually I missed the exact moment because I ran home to give Anna her shot and help Richard put the kids to bed. I got back just in time to see them cleaning her up. Thank you Shawna and Lance for letting me be a part of the excitement.

As one family welcomes a new member, another family prepares to say goodbye. My friend Sandra is planning her sons funeral based on test results they got on Monday. If you would like to encourage her you can write her a note on www.caringbridge.org/visit/matty.

As for me, God continues to guard my heart and mind in Christ Jesus. I began 2007 fully expecting to lose Anna sometime this year. After you come to terms with death, anything you get besides that is a blessing. We continue to give up our "rights" to Anna and trust God with her future. It helps our attitudes to have Anna so bubbly and full of life right now, but I'm sure there will be some difficult days next week. Please pray that we will not be swept under by our circumstances, but will stand firm on the truth.

"When you pass through the waters I will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." (Is 43:2)

We WILL go through deep waters, raging rivers and blazing fires, but we CAN emerge victorious. I'm counting on it.

Love, Marlo

Wednesday, February 7, 2007 3:51 PM CST

I'm glad everyone likes the new look. Here's the "rest of the story". For Christmas Anna wanted press on earrings. Evidently the only press on earrings her Sittie could find, came in a box called "A Whole New Me; makeover magic".
Because of the "mess" factor involved in "makeover magic" I hid the box in the closet. Yesterday Anna found the box. She and Audra disappeared into the bathroom. After about the third time Anna yelled "Nobody come in!", I thought I should go in. Her "hair" was about halfway done. Because I was in a good mood, instead of LOSING IT, I grabbed the camera. I wasn't in such a good mood later when I found blue spots on the carpet!
Check out the photo page for more pictures--including the red bow Audra drew on top.
Love,
Marlo

Tuesday, February 6, 2007 2:46 PM CST

We are busy getting ready for another trip. So far Jacob is the only one who knows we are going. Please pray for the right words to say to Anna about what is happening. This will be a short trip compared to some of our others. (2 weeks instead of 6 weeks!) We are looking forward to seeing our Delaware friends again.
At this point I am more hopeful/excited rather than scared. My prayer is that the God of hope will fill us with all joy and peace as we trust in him. (Ro. 15:13)
Love,
Marlo

PS. The photo above is Anna after her "make-over" done by her sister Audra. She thinks she is very pretty with blue hair.

Monday, February 5, 2007 8:54 AM CST

UPDATE: Anna's surgery is scheduled for next Thursday (2/15).

"Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord." (Ps. 27:14)

We are waiting patiently to hear a surgery date. Thank you to everyone who has offered to help while we are gone. We will definately need help with the kids.
I am VERY glad to get the last 5 days behind us. Anna was hooked up to a pump for 3 hours every day. (2 for the antibiotic and 1 for the chemo) It was a challenge scheduling everything around our normal activities.
Our family had our first colds of the season this weekend. Audra and Will have gotten over the worst of it, but for old people like me, it seems to linger longer. Luckily Anna hasn't exhibited anything but a runny nose.
Love,
Marlo

Friday, February 2, 2007 7:56 AM CST

"In the morning you will see the glorious presence of the Lord." (Ex. 16:7)

In the passage above, the Lord's presence was in the the provision of manna. God has shown his presence in our lives once again through his provision. Before we even knew we would be going to Delaware for another surgery, he provided a way to pay for the trip. Several months ago someone contacted me about being the beneficiery of a high school fundraiser in February. At that time I didn't even think Anna would live until Feb. so I didn't return the phone call. Later when things started looking better, I returned the call, but was told that someone else had been selected. A few days later I got a phone call saying that they hadn't chosen someone else and that the students had voted to help Anna with her medical expenses. We have been very fortunate to have good insurance that covers the majority of our hospital expenses. It does not however, cover the costs of travel, car rental, food, lodging, etc. WE just found out a few days ago that we would be going back to DE (for the 6th time). GOD knew ahead of time and PROVIDED for all of our needs. His timing is perfect. His presence is in his provision.
Grateful,
Marlo

Wednesday, January 31, 2007 4:28 PM CST

"You can be sure that I am watching over you and have seen what is happening to you." (Ex. 3:16)

I talked to the surgeon today. He wants to do the surgery when Anna's counts go back up in two weeks. That means we will be headed to Delaware the week of the 14th. The surgery will involve removing her vena cava and replacing it with something else. (I hope you won't ask too many detailed questions because at this point, I won't be able to answer them!) We should be gone 10 days if everything goes smoothly.

Today we went to the clinic. We were there 6 hours. We had to get a Vanco level (it was high), labs, chemo, and de-access and re-access her port (the needle has to be changed once a week). We also did an interview and photo session with a group from Francis Tuttle who were doing a video project on pediatric cancer. It was a long day, but Anna is still going strong.

The roads are icy AGAIN. We are waiting for Richard to make his way home after his office closed early. We are thankful for a cozy house and especially for our friends who invited us over for dinner tonight. What a blessing!

Love,
Marlo

Monday, January 29, 2007 2:34 PM CST

We're home. The doctor didn't want to do chemo today so we left earlier than I thought we would. We will go back to the clinic for chemo on Wednesday. We will be doing IV antibiotics every twelve hours at home for another week. YUCK!

What I like best about being home:
No one comes into our bedroom during the night to take temp., blood pressure, hook up IV's, reset pumps, or empty the trash.

Dumbest question I heard during this hospital stay:
Do you want me to weigh her now or wait until later? (This was at 4:30am.)

Getting back to "normal",
Marlo

PS. Congratulations Vickie! We've always thought you were a winner!

Sunday, January 28, 2007 4:33 PM CST

Thank you everyone who asked about Anna's particular organism. It has been identified as staph-epi. It's a common staph organism found on your skin. It is treated with vancomiacin. They have lowered her vanco dose and are checking her levels before each dose to make sure it doesn't build up. So far it has been 30 hours since the last culture and nothing has grown. That means we may be going home tomorrow.
They called us during church this morning (Sittie and Pop were staying at the hospital) to tell us that Anna needs a transfusion. I think her low hemoglobin may be caused by all of the lab work this week! For whatever reason, she will get blood tonight. Hopefully, that will put her in good shape for chemo tomorrow.
I'm home for a few minutes to let the dog out so I think I'll take a quick nap.
Love,
Marlo

Saturday, January 27, 2007 1:29 PM CST

I have felt convicted that my earlier post was not right. By now I should have learned that my hope is not in good reports or talented surgeons. Dr. Dunn would be the first to admit that he is not God. He was right in saying that surgery and chemo could "prolong life". There really is no complete cure for anything in this life. We all are living on a limited amount of time. This life is NOT FOREVER and it's NOT ALL THERE IS.
I should "dare to hope when I remember this; The unfailing love of the Lord never ends...Great is his faithfulness; his mercies begin afresh each day. I say to myself. 'The Lord is my inheritance; therefore, I will hope in him!'" (Lamentations 3:21-24)
Anna's cultures continue to be positive. They identified the organism (a common one found on your skin). Unfortunately it only responds to a very powerful antibiotic that Anna's body has trouble processing because of her decreased kidney function (a result of past chemo). They are trying to find the right dose for her body. She also has to have benadryl because of an allergic reaction she had yesterday. In spite of all that, she feels pretty good. Audra is hanging out with us today while the boys are at Jacob's basketball game.
Love,
Marlo

Friday, January 26, 2007 10:05 PM CST

We had a good day at the hospital. Anna was in good spirits. In addition to watching the third season of Sponge Bob (thanks again Vickie!), she went for a wagon ride through the halls singing Christmas carols. She LOVED everyone who came to visit. She even made one person play hide-and-seek (not easy to do in a hospital room). She told me that she likes spending "lots" of days in the hospital because then you get to have a "Welcome Home" party. She was rather disappointed the other night when I said that you don't get parties for visits to the ER.
Tonight we were able to keep our plans to go to the Global Impact Conference at church thanks to Lydia and her daughter Lauren who came and played with Anna. THANK YOU!
If anyone else wants to visit us this weekend, please be aware that the hospital has MOVED. It's in a building across the street from the "old" hospital. There is also a new parking garage.
Anna let Richard spend the night with her tonight. She thinks he lets her stay up later. I bet they will be asleep before 4am when we finally were left alone last night!
We got an email from the surgeon. I'll quote part of the letter,
"I believe this recurrence can be removed surgically. I have also
contatacted Dr. Halligan because he has been a partner with us in treating
children who others had thought to be untreatable. Because of that, his
opinion is respected. I still believe a combination of chemotherapy and
surgery offers her the hope of prolonged survival with a good quality of
life if not cure itself."
We were happy with this news. Although it means another trip to Delaware (which won't be easy), we have been given some hope. Trust me, this journey is MUCH easier when you have hope. Thank you Dr. Dunn for not giving up!
Tired,
Marlo

Thursday, January 25, 2007 11:56 PM CST

We had just fallen asleep when the phone rang. It was the ER doctor saying that the culture was positive again and that we needed to come tonight and be admitted. As you can imagine, having to pack our bag for the third night in a row is not easy. I HATE to have to go wake up Anna and put her in the car again. We asked about waiting until morning and the oncologist told us that the antibiotic they gave her yesterday would be wearing off and that the infection could progress rapidly once it does. She needs some higher dose antibiotics to fight this while it is still manageable. We will have to be in the hospital until she has negative cultures. Pray that will be SOON. If the cultures stay positive she will have to have her port removed. (If they are negative we can come home and finish her antibiotics through home health.) Please pray for strength and endurance for all of us. We trust that although this seems like bad timing, that God can see a bigger picture.
Love,
Marlo

Thursday, January 25, 2007 10:07 AM CST

We were at the ER for about 5 hours last night. It was VERY crowded. They drew another culture and gave Anna another dose of antibiotics and sent us home. They think that the first positive culture was caused by "contamination" and not really an infection, but they wanted to make sure.
Anna didn't mind the waiting. (After all, she had the whole 2nd season of SpongeBob to watch.) She did mind getting reacessed so soon. It was pretty painful and bled more than usual when they deacessed her. She is still asleep this morning and it's time to take the dog to the vet. I would cancel that, but the dog seems pretty sick. Thanks to Sittie and Pop who have given up some sleep the past couple of nights and are available to take Asta to her appointment. Thanks also to the neighbors who let us drop off three kids and a pizza at 6 o'clock last night.
Love,
Marlo

Wednesday, January 24, 2007 5:15 PM CST

Quick update. I just got a call from the ER and Anna's culture was positive. We are headed back to the ER to repeat the culture and possibly be admitted for antibiotics.
...just when I thought everything was okay!
M

Wednesday, January 24, 2007 2:33 PM CST

We are still home. Anna seems to be feeling better and hasn't run a fever today. Last night before all of this happened I prayed that God would keep me from being fearful as I waited for the MRI results. I guess his method last night was "distraction". Although we have spent many nights in the ER during the last two years it had been a long time. We are SO thankful for the "good health" we have had since the transplant 6 months ago today. I feel like these months have been a gift. I guess I'm old now that the only gift I want is more time!
While I was typing, the oncologist called with the MRI report. They saw 2 or 3 small spots outside the liver. To me the fact that they are outside the liver is a good thing (remember we've already had more than our fair share of transplants.) We really won't know whether the report is "good" or "bad" until we hear from the surgeon. He will be the one to decide if he's going to try to get them out.
Meanwhile, Anna has ordered pizza for dinner so I hope that means she is hungry again.
Love,
Marlo

Wednesday, January 24, 2007 7:01 AM CST

We got home at 5:30am after labs and a dose of antibiotics. We'll check with the clinic and let them know how she's doing later today.
It's time to get the kids up for school....
M

Wednesday, January 24, 2007 1:22 AM CST

Quick update. Anna woke up with a fever so we are on our way to the hospital. Don't know if we will be admitted or not.
M

Tuesday, January 23, 2007 2:15 PM CST

We made it through the MRI. No results yet. We will overnight the scans to Delaware as soon as we get them.
Thanks to the "craft ladies" in the clinic who watched Will for me while we were downstairs. He is so proud of his "portfolio".
Love,
Marlo

Sunday, January 21, 2007 8:36 PM CST

We enjoyed worshipping together this morning. I wanted to share the words to a song we sang that really encouraged me.

You are God alone
From before time began
You were on Your throne
Your were God alone

And right now
In the good times and bad
You are on Your throne
You are God alone

Unchangeable
Unshakable
Unstoppable
That’s what You are

(You Are God Alone, Phillips, Craig, and Dean)

God is the same in the good times and the bad. I don't know about you, but in a world that changes every day, I'm glad there is someone who is unchangeable.

Anna seems to have recovered from her nausea and is eating, playing and causing trouble--yea! We are scheduled for an MRI on Tuesday. Pray that they will find the tumor so that we can GET RID OF IT!!!
Praise God that we are learning to LIVE with uncertainty. How do you live in the face of death? My prayer has been "Lord, teach me how to live." His answer has been
1) Trust me today.
2) Don't worry about tomorrow.
3) Be thankful.
That's it! If I can master those things, I will be able to live ABUNDANTLY! Is life still hard? YES! Does it hurt? YES! BUT..."The Lord is my strength and my song; he has become my victory." (Ex.15:2) "everything he does is worthy of our trust." (Ps 33:4)
Leaning on Him,
Marlo

Friday, January 19, 2007 9:30 AM CST

Another "ice" day here in OKC. Anna has been feeling "sick" off and on all week. We are hoping it's just a delayed reaction to all of the chemo she got last week. She started eating more last night so maybe we are through the worst of it.
A BIG thank you to the Buchanan family. They felt sorry for Anna having to live in a house without Sponge Bob so they gave us the first four seasons on DVD. Now our house will seem like heaven to her with "all Sponge Bob, all the time." I'm actually not going to show the kids the entire set or we really would have to watch them ALL today. We'll bring them out one at a time!
Waiting for more snow tomorrow,
Marlo

Wednesday, January 17, 2007 6:04 PM CST

"Teach me how to live, O Lord." (Ps 27:11)

We are still iced in (along with all my friends in Texas now!) By "iced in" I mean "no school". Everything else seems to be open. I was able to get to the store this morning and stock up on shampoo--ha ha.
Anna has an MRI scheduled for Tuesday. If there is something there that can be taken out, I'm assuming we will go to Delaware ASAP.
So we brace ourselves for the whirlwind once again!
Love,
Marlo

Tuesday, January 16, 2007 8:32 PM CST

Life can be so good
Life can be so hard
Never knowing what each day
Will bring to where you are
Sometimes I forget
And sometimes I can't see
That whatever comes my way
You'll be with me

Nothing is for sure
Nothing is for keeps
All I know is that your love
Will live eternally
So I will find my way,
And I will find my peace
Knowing that you'll meet my every need

My life is in your hands
My heart is in your keeping
I'm never without hope
Not when my future is with you

My life is in your hands
And though I may not see clearly
I will lift my voice and sing
Cause your love does amazing things
Lord, I know, my life is in your hands

(My Life is in Your Hands, Kathy Troccoli)

I think I've put these lyrics on before, but they were a comfort again to me today. We really DON"T know what each day will bring. We've had a lot happen since my last post. Yesterday Jacob was sledding with friends and one of the girls he was with was hit by a car (she'll be okay). At the same time, Richard got a flat tire on the way home from work (it was 23 degrees outside). A homeless man helped him change it, but unfortunately the spare also went flat. He was able to make it home thanks to a string of green lights. By the time he got here, the wheel was off the rim. So we only had one car, four kids out of school, and a clinic appointment this morning. We thought we were going just for labs and a quick IV "push", but the nurse thought Anna's port looked swollen so she wanted to get it checked out before she injected the chemo. We had to wait several hours for a chest X-ray and a flouroscopy (sp?) to check the placement of the port. Everything checked out fine, but we were there for 5 hours. We also got the AFP back from last week. I was hoping for under 10,000 and it was over 11,000. We drew another AFP today so we will know tomorrow if the double dose of chemo this week had any effect. Everytime the AFP rises it feels like a death sentence. It knocks you down and you have to take some time to catch your breath. Today I got a call from a friend who seems to be inspired to reach out to me on difficult days. She read to me from Psalm 27....
"The Lord is my light and my salvation---so why should I be afraid?
The Lord protects me from danger---so why should I tremble?....
Though a mighty army surrounds me, my heart will know no fear.
Even if they attack me, I remain confident." (vv1,3)
It is hard to remain confident in the face of bad news. My confidence HAS to be in the Lord and not in numbers, tests, or even a long life.
Anna prayed the other night, "Lord, help me not be afraid to go to heaven to live with Jesus." (No, we were not talking about it. She just included it in her prayer before dinner.) That is my prayer too. "Lord, help me not be afraid for Anna (or me) to go to heaven to live with Jesus."
Love,
Marlo
PS. The next night she said she hopes the playroom in heaven has the Sponge Bob channel. (We don't get that one at our house.)

Monday, January 15, 2007 3:26 PM CST

"And we are eagerly waiting for him (Jesus) to return as our Savior. He will take these weak mortal bodies of ours and change them into glorious bodies like his own." (Phil 3:20-21)

We are waiting for that day!
Anna's pain hasn't gotten worse so we are waiting until tomorrow to get it checked out. Thanks for praying for her!
We just heard from Delaware and the surgeon thinks MAYBE he saw something on the CT. I think it is easier right now to NOT know where the tumor is. (Easier for me that is!) Either it's operable which means a trip to Delaware, or it's inoperable. I've been enjoying these days of relative calm. What a BLESSING it is to be able to "catch our breath" in between moments of crisis.
Love,
Marlo

Sunday, January 14, 2007 4:10 PM CST

Your words are what sustain me. They bring me great joy and are my heart's delight. (Jer 15:16)

It looks like we missed the worst of the storm. Our electricity is still on so we are comfortable. The only thing I have run out of is shampoo so I guess we'll survive.
Anna has been having some pain in her port. It looks a little swollen. We described it to the on-call doctor and he told us to wait to see if it got any worse before we came in. We are hoping that she just bumped it yesterday while she was playing. We do not want to have to go to the ER on a Sunday during an ice-storm. My goal has been to stay out of the hospital until after their big move later this week. (They are moving to a new building and will have nice new private rooms!) Pray that whatever is wrong can wait until the clinic opens on Tuesday.
I canceled the ultrasound tomorrow--partly because of the roads and partly because they are trying to schedule an MRI.
Staying warm,
Marlo

Friday, January 12, 2007 11:23 AM CST

We are iced in today. It's actually fun as long as the power stays on. Anna is hooked up to her last day of chemo which means she gets to take a bath later today.
The surgeon called from Delaware and wants Anna to have an MRI of her abdomen. He hasn't given up on us and is still trying to find SOMETHING he can take out. We LOVE our surgeon--remember me telling you how he loaned us his car during the transplant so we could go get something to eat? He's also the one who did some fancy cutting and sewing trying to get clean margins. Whenever Anna has a CT scan the radiologist asks "What happened here?"
Love,
Marlo

Before I was a Mom I never tripped over toys or forgot words to a lullaby.
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.
Before I was a Mom - I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind and my thoughts.
I slept all night.
Before I was a Mom I never held down a screaming child so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin I never sat up late hours at night watching a baby sleep.
Before I was a Mom I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
Before I was a Mom - I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and happy.
Before I was a Mom - I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth, The joy, The love, The heartache, The wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much before I was a Mom.

(Thanks Julianne for sending this to me.)

Wednesday, January 10, 2007 7:05 PM CST

He does not ignore those who cry to him for help. (Ps 9:12)

Thank you to those who have helped out with Anna the past couple of weeks. I have had four different doctors appointments--nothing wrong--just check-ups that I haven't had time for during the last couple of years. Anna is feeling so good that I have been able to leave her without worrying that she will spike a fever while I'm gone. Today she went to Ms Shelley's house and did NOT want to leave. I told them, "This is not going to pretty," then picked her up kicking and screaming and carried her out to the car. Not good behavior, but I'm glad she has the strength to fight (and get into trouble). Double the chemo seems to have had no effect on her energy level. (Does that mean it's not working? I don't know.) We don't have an AFP this week yet. I'm bracing myself for 10,000. I'll be happy if it's anything less than that. We have an ultrasound scheduled for Monday at 11:30. The kids are out of school so they will get to take a little field trip with us. The ultrasound is one of Anna's least favorite tests because they have to touch her stomach. (She won't even let us say the word "stomach".) Pray that she will stay still so they can get good pictures. Pray that the tumor would show up.
Thanks for staying with us through this long journey. I would "lose heart" and drop out if I could. We appreciate every kindness that is shown.
Love,
Marlo

Monday, January 8, 2007 3:05 PM CST

"Can all your worries add a single moment to your life? Of course not...So don't worry about tomorrow, for tomorrow will bring it's own worries. Today's trouble is enough for today." (Matt 6:27,34)

We started a new round of chemo today. We are doubling the dose and giving it over one week, then taking two weeks off to recover. This will make our life a bit easier as we will only have chemo one week instead of two. It will increase the amount Anna is getting in that we will start a new round every three weeks instead of four. I also asked the doctor to schedule an abdominal ultrasound to look for the tumor. I'll let you know when that is so you can pray for God to make seeing eyes SEE (if he can make them blind, he can make them see!)
Anna continues to make us laugh with her imagination. We alternate between pretending we are poor to being "filthy rich". One night at dinner when we were supposed to pretending we were poor Anna asked for a banana. I told her we were poor and didn't have anymore food. She said "Well, we can pretend we have a little bit more."
She weighed in this week at a record 32.5! Today is good. We'll worry about tomorrow tomorrow.
Love, Marlo

Saturday, January 6, 2007 9:02 PM CST

"Blessed are those who mourn, for they SHALL BE COMFORTED." (Matt. 5:4)

Another friend died today. (Princess Mia in Arizona; www.caringbridge.org/visit/princessmia ) It was one year ago when I was forced to face the fact that kids really do die. Up until then I was under the delusion that modern medicine had all of the answers. It doesn't matter which hospital or how many specialists you see, or if you do everything "right"--some kids still die.
Tonight at dinner Anna mentioned that when we die, she wants to send her grandmother first. When I asked her why, she said because she was a little scared. (We were NOT talking about dying when she brought this up.) I tried to explain that in heaven a thousand years is like a day, so whoever went first would not have to wait very long. Also that whoever goes first would get to show the rest of us around when we got there. So then the kids started arguing over who would get to go first. (Did I mention that they will argue over anything?) It was a very interesting dinner conversation!
Please pray for Mia's family tonight.
Love,
Marlo

Friday, January 5, 2007 2:48 PM CST

(new photos 1/5)

"You have given me greater joy than those who have abundant harvests of grain and wine." (Ps 4:7)

True joy does not depend on our circumstances. The other night I was putting Will to bed and he asked me, "Is this year going to be better or worse than last year?" To tell you the truth, I am tempted to dread what this year may hold for us. I told Will that there would be good days and bad days, but that God would stay the same no matter what happens.
(Lord help me live this day. You have told me not to worry about tomorrow, but I keep doing it anyway. The better things are, the more afraid I am of "losing" what I have.)
Anna continues to feel good. She even jumped on the trampoline a few days ago. She got to go to a friends house yesterday and today and she loved it.
We will start a modified dose of chemo on Monday and start giving it to her every three weeks (instead of four). According to the experts, there is no way for the chemo to get rid of all the cancer. All we can hope for is more time. That is a concept that is difficult to live with, but I guess it is one that we all live with--we just don't think about it. There is NO complete healing for any of us this side of heaven. When we are healed from any disease, it is only temporary.
All any of us has is today.
Love, Marlo

Tuesday, January 2, 2007 5:17 PM CST

"Why are you so angry?" the Lord asked him. "Why do you look so dejected? You will be accepted if you respond in the right way. But if you refuse to respond correctly, then watch out! Sin is waiting to attack and destroy you, and you must subdue it." (Gen. 4:6-7)

Those are verses the Lord "gave" me on this day in 2002. Later that day we had an ultrasound and were told that our daughter may have Down's Syndrome. I knew it was important to respond correctly as we tried to trust God with our child's future. A week later we had another ultrasound and the specialist said he could find "no abnormal indicators." God had a different plan for Anna. Today it is still a daily decision to trust God with Anna's future--however long that may be. These verses remind me that fear, bitterness, and despair are waiting to attack and destroy me so I MUST respond in the right way.
Yesterday we celebrated the first day of 2007 by going to Incredible Pizza. We got there when it opened and were the only ones in the playroom. The kids had a great time. While we were eating Anna said, "I'm getting my happy feeling again." Later, we dropped Anna off at her Sittie's while we took the other kids to see "The Nativity" then it was back to Sittie's for spaghetti and the Fiesta Bowl.
Today we stayed home and made a weak attempt to de-decorate. It's always more fun putting things up than taking them down.
Tomorrow it's back to the clinic bright and early for labs.
Happy 2007!
Love,
Marlo

Sunday, December 31, 2006 10:58 PM CST

"I have heard about you Lord, and I am filled with awe by the amazing things you have done. In this time of our deep need, begin again to help us...Show us your power to save us...remember your mercy....Even though the fig trees have no blossoms, and there are no grapes on the vine; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields and the cattle barns are empty, YET I will rejoice in the Lord! I will be joyful in the God of my salvation. The Sovereign Lord is my strength! He will make me as surefooted as a deer and bring me safely over the mountains." (Habakuk 3:2,17-19)

Our hope this year is for God to bring us safely over the mountains. I read this week that "Christ didn't come to end sorrow: he came to be a part of it." He is with us in this.
We had a wonderful evening with friends tonight as we said goodbye to 2006. We hired two girls to watch 12 kids upstairs so that we parents could visit downstairs. As you can see by my posting time, we didn't make it until midnight!
Anna has felt great the past couple of days. She was even having Richard swing her upside down by her ankles--something she hasn't done in a couple of years. Her weight is up to 31.5lbs--almost a record for her. We don't take these days for granted and we know our circumstances could change very quickly. So we are very THANKFUL for today as we look back over the "mountains" we have traveled this year. Thank you for praying for us and for providing for us. We are blessed.
Happy New Year,
Marlo

Friday, December 29, 2006 2:00 PM CST

"I will praise the Lord as long as I live. I will sing praises to my God even with my dying breath. Don't put your confidence in powerful people; there is no help for you there...But happy are those who have the God of Israel as their helper, whose hope is in the Lord their God." (Ps 146:2,3,5)

I'm sorry if I confused you with my report yesterday. If Anna had another type of cancer, the results of her CT scans would qualify her for the coveted label of NED (no evidence of disease). We could live blissfully for several months until BAM the cancer would "return". This happens all too often.
With Anna's cancer there is a very reliable "tumor marker" called the AFP. A normal AFP is under 10. Anna's is currently around 5,000. So even though we can't see anything, we know that it is there. We know a family in Australia whose son's tumors didn't show up until his AFP was above 26,000. So although it's unusual, it does happen.
For now we will continue with chemo and CT scans until we see where the tumor is. Hopefully it will be some place where they can surgically remove it. We could choose to stop chemo and let the tumor grow so that we could see it, but then we run the risk of it spreading out of control.
So once again, we are thankful for today and trusting God with the future.
Love,
Marlo

Thursday, December 28, 2006 7:33 PM CST

We made it to Houston and back in 12 hours. We are exhausted, but glad to be in our own beds tonight. My overwhelming feeling today at MD Anderson was that 4 year olds shouldn't have cancer. The hospital has a nice child/adolescent clinic but it is primarily an adult facility. Anna was at least 60 years younger than the 50 other people in the CT waiting room. She definately stood out watching her Goofy movies and singing Christmas carols.

The peripheral IV was worse than I thought it was going to be. It took three of us to hold her down and then she wouldn't stop screaming afterwards, "It hurts bad!" Finally she settled down to a whimper and we went for the CT. After the scan, I had to hold her down in a room full of other patients while they took out the IV. I was about to burst into tears so I couldn't look anyone in the eye. I just mumbled, "Thanks" and hurried out to find Richard.

After that things were great. We had lunch in the cafeteria. Anna ate hers, mine, and Richard's. After lunch she threw pennies in the fountain. Three of her wishes were, 1) no more back pain, 2) that she wouldn't be sick anymore, and 3) that she would have a welcome home party. I told her that I didn't think there would be a party since we had only been gone a few hours.

I was able to make a quick visit to a mom I met on a hepatoblastoma website then it was time to meet with the doctor. She told us the radiologist could not find any tumor. She has never had anyone with such a high AFP where you could not see the tumor. Because of this, Anna cannot enter any Phase I studies. (I guess they have some crazy rule about being able to see the tumor before they can treat it.) She had a few ideas about things we could try, but no miracle cures. So we are pretty much where we were before. We are glad we went because now we have a contact who seems to know the most up-to-date treatments available. We also feel good about having Anna's CT read by someone who spends their day looking for tumors.

For now we will continue our current therapy, perhaps starting every three weeks instead of four--if Anna's counts can recover in that amount of time.
Thank you for praying for us today. Anna was in a great mood--singing and dancing--most of the time. The travel went great. We even got on an earlier flight which put us home two hours ahead of our scheduled arrival.
Tired,
Marlo

PS. If you want to be inspired visit
www.caringbridge.org/ms/brentnason

Wednesday, December 27, 2006 7:20 PM CST

Here's our schedule for tomorrow....
6:30 Flight leaves
8:30 Paperwork
9:00 Get IV
9:30 Chest X-ray
10:30 Start drinking contrast
12:00 CT scan
2:30 Meet with oncologist

I've told Anna that she is having a "donut" test tomorrow (her name for the CT machine), but that it is at a different hospital. She doesn't know that the hospital is in Texas. Boy will she be surprised when we wake her up very EARLY and get on an airplane.
I'll be honest with you. This is NOT something I want to do. I really don't want to put Anna through the stress of another hospital and different doctors. This is but one more chance to say, "not my will, but Thy will be done." We have NO idea what they may or may not see on the scans and what they will recommend. Will they tell us there is nothing more to do, or will there be a new miracle drug to try? We are trusting in the One who already knows.
Love,
Marlo

Tuesday, December 26, 2006 1:05 PM CST

Happy Boxes Day!
I know it's really Boxing Day, but at our house it looks like "boxes" day. We had a lovely Christmas. My parents arrived Sunday afternoon and gave the kids their present--a trampoline. Richard and my dad spent the rest of the day putting it together. At one point Richard carried a crying Will into the house. It was our first trampoline injury. Of course it was our old jogging trampoline that he tripped over--not the new big one--that caused his injury.
On Christmas Eve we went to the candlelight service at church. I was enjoying watching my mom hold Anna while she held up her candle, when I heard a voice behind me say "Hot wax! Hot wax!" Will's candle got a bit hot for him. We were fortunate to have both sets of Grandparents with us for dinner after the service. When we FINALLY got the kids to sleep, we got out the presents and watched "White Christmas." (One of my favorite traditions.) The next day we opened presents at home and then went to Richard's parents' in the afternoon. Anna felt good most of the time except for her frequent trips to the bathroom. She didn't even think about her shot all day. I will have someone look at her knee tomorrow when we go for labs. We have to report to the hospital in Houston at 8:30am on Thursday. I have trouble getting to the clinic here by 8:30! Anna will have a chest xray and a CT scan before we see the doctor. It will be a LONG day and she will have to have a peripheral IV instead of using her port. It doesn't sound like a big deal, but it is HUGE to Anna. Pray for strength, speedy travel, peace, and wisdom.
Thank you to those of you who have offered to help with the other kids. They will spend a fun day with friends and grandparents. I will, however, need help with the kids if I am going to redeem my Christmas present from Richard. He gave me a DVD of "White Christmas" and a certificate for dance lessons. (Our favorite song in the movie is "The best things happen while you're dancing....") I'm not really sure how we are going to manage dance lessons, but I'm willing to try!
I better get back to the fun. Audra has been singing with her new karaoke machine. Will is playing with his robodog. Jacob and a friend are on the trampoline, and Anna is playing ice-cream shop.
Love, Marlo

PS. Anna's prayer at lunch today...
"Lord, help my parents be able to live together" (no we haven't been fighting, but some friends of our have recently gotten a divorce and it has made our kids very thankful for two parents living at home)
"And Lord, help people to know about the real meaning of Christmas. That Christmas is about Jesus being born." (We have really tried to make Jesus the center of our celebration. We told the kids that he deserved the BIGGEST birthday party of all!)
Anna has also been praying lately for people to stay dry. I think she is praying for the homeless. She rarely prays for herself because she doesn't see herself as sick.

Sunday, December 24, 2006 7:59 AM CST

Do you remember me?
I sat upon your knee;
I wrote to you
With childhood fantasies.

Well, I’m all grown-up now,
And still need help somehow.
I’m not a child,
But my heart still can dream.

So here’s my lifelong wish,
My grown-up christmas list.
Not for myself,
But for a world in need.

No more lives torn apart,
That wars would never start,
And time would heal all hearts.
And everyone would have a friend,
And right would always win,
And love would never end.
This is my grown-up christmas list.

As children we believed
The grandest sight to see
Was something lovely
Wrapped beneath our tree.

Well heaven surely knows
That packages and bows
Can never heal
A hurting human soul.

What is this illusion called the innocence of youth?
Maybe only in our blind belief can we ever find the truth.

No more lives torn apart,
That wars would never start,
And time would heal all hearts.
And everyone would have a friend,
And right would always win,
And love would never end, oh.
This is my grown-up christmas list.

("Grown up Christmas List", Amy Grant)

Merry Christmas Eve. We are looking forward to a fun day with family. I think the kids are looking forward to opening one present. But I have learned, as the song says, "packages and bows can never heal a hurting human soul".
I have a strange prayer request today. We need a scab. That's right a scab. Anna skinned her knee a few days ago. She didn't bleed much, but because her platelets are so low, she doesn't have a scab. Besides hurting her, it is an easy spot for germs to cause an infection while her counts are low.
Another request is for peaceful/fearless shots. It's terrible having to get shots on Christmas. Pray that she would take them in stride and not be anxious and spoil her fun.
We are SO thankful to have another Christmas all together. We have friends who are going through their first Christmas without their loved one and we have other friends in the hospital. BE THANKFUL. BE JOYFUL. TRUST GOD FOR TOMORROW AND LIVE TODAY.
Joy,
Marlo

Friday, December 22, 2006 7:02 AM CST

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is a great miracle.

Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity." Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. ” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

(Sent to me from Amy N., step-mom to angel Maddie)

Merry Christmas.

Love, Marlo

Thursday, December 21, 2006 7:40 AM CST

The Lord is good. WHEN trouble comes, he is a strong refuge. And he knows everyone who trusts in him. (Nahum 1:7)

*Notice it says WHEN and not IF trouble comes......

Yesterday was a much better day for me. On Tuesday I was so focused on my problems that they were all I could see. I spent most of the day in tears. Wednesday morning I was reminded that God knows where I am every moment and that every day of Anna's life was laid out before a single day had passed (Ps 139:3,16). I get so focused on the goal of a long life that I forget that God's goal is even higher--eternal life. I know that if I could see all this from God's perspective I would have the peace that comes from him alone.
I was blessed yesterday with lots of help so that I could go to my appointment AND go to my kids' parties at school. It was so much fun to visit their classrooms and see all of the fun. Thanks Leslie, Gardners, and Pop for helping out.
As Anna said yesterday, "Only one more hand until Christmas!" (5 days)
Counting the days,
Marlo

Wednesday, December 20, 2006 12:48 AM CST

Twas The Night Before Christmas...Mom Style

Twas the night before Christmas, when all thru the abode
Only one creature was stirring, & she was cleaning the
commode.

The children were finally sleeping, all snug in their beds,
While visions of Hot Wheels & Barbie, flipped through their
heads.

The dad was snoring in front of the TV,
with a half-constructed bicycle propped on his knee.
So only the mom heard the reindeer hooves clatter,
which made her sigh, "Now what is the matter?"

With toilet bowl brush still clutched in her hand,
She descended the stairs, & saw the old man.
He was covered with ashes & soot, which fell with a shrug,
"Oh great," muttered the mom, "Now I have to clean the rug."

"Ho Ho Ho!" cried Santa, "I'm glad you're awake."
"Your gift was especially difficult to make."
"Thanks, Santa, but all I want is time alone."
"Exactly!" he chuckled, "So, I've made you a clone."

"A clone?" she muttered, "What good is that?"
"Run along, Santa, I've no time for chit chat."
Then out walked the clone - The mother's twin,
Same hair, same eyes, same double chin.

"She'll cook, she'll dust, she'll mop every mess.
You'll relax, take it easy, watch The Young & The Restless."
"Fantastic!" the mom cheered. "My dream has come true!"
"I'll shop, I'll read, I'll sleep a night through!"

From the room above, the youngest did fret.
"Mommy?! Come quickly, I'm scared & I'm wet."
The clone replied, "I'm coming, sweetheart."
"Hey," the mom smiled, "She sure knows her part."

The clone changed the small one & hummed her tune,
as she bundled the child in a blanket cocoon.
"You're the best mommy ever. I really love you."
The clone smiled & sighed, "And I love you, too."

The mom frowned & said, "Sorry, Santa, no deal."
That's my child's love she is trying to steal."
Smiling wisely Santa said, "To me it is clear,
Only one loving mother is needed here."

The mom kissed her child & tucked her in bed.
"Thank You, Santa, for clearing my head.
I sometimes forget, it won't be very long,
when they'll be too old for my cradle & song."

The clock on the mantle began to chime.
Santa whispered to the clone, "It works every time."
With the clone by his side Santa said "Goodnight.
Merry Christmas, dear Mom, You will be all right."

(Thanks to Elaine L. for sending me this today!)

Smile,
Marlo

Tuesday, December 19, 2006 5:54 PM CST

It has been a long day. We left the house at 8am because Anna needed a blood transfusion. We weren't too sad about that because today was the Fiesta Bowl Pep Rally at the clinic. (see new photos) We didn't get hooked up until 10am and it takes 3-4 hours to infuse. I had a doctors appointment at 2 so I asked the nurse to speed it up a little. I hurried home and dropped off a sleepy Anna then raced to the clinic only to find out that my doctor had just left to do an emergency C section. (Of course I wanted to tell the receptionist, "Do you know what I had to do to get here?" but I smiled (weakly) and rescheduled for tomorrow.) Anna was very disappointed when I came back so soon. Ms MaryAnn had to stay and read books and bake cookies even though I was there! After all that we still had to do our chemo.
Hopefully tomorrow will be less stressful, but with managing another appointment, chemo, and the last day of school I doubt it.
Love, Marlo

Monday, December 18, 2006 1:37 PM CST

Someone gave me a CD with this song on it yesterday at church. I want to dedicate it to Audra, Sally, Natalie, Gail, Staci, Mary and Jamie as they grieve the loss of their children and to my other friends clinging to that last candle--Leigh, Sandra, Elena, Amanda, Sherrie and others. Ladies we MUST believe that the one who created our children can make beauty from our pain. Keep on making it through one more day and wait for the dawn when hope will come again.

The lights go out all around me
One last candle to keep out the night
And then the darkness surrounds me
I know I'm alive
But I feel like I've died

And all that's left is to accept that it's over
My dreams ran like sand through the fists that I made
I try to keep warm but I just grow colder
I feel like I'm slipping away

After all this has passed
I still will remain
After I've cried my last
There'll be beauty from pain
Though it won't be today
Someday I'll hope again
And there'll be beauty from pain
You will bring beauty from my pain

My whole world is the pain inside me
The best I can do is just get through the day
When life before is only a memory
I wonder why God let me walk through this place

And though I can't understand why this happened
I know that I will when I look back someday
And see how You've brought beauty from ashes
And made me as gold purified through these flames

Here and I am at the end of me
Trying to hold to what I can't see
I forgot how to hope
This night's been so long
I cling to your promise there will be a dawn

("Beauty From Pain", by Superchick)

Living,
Marlo

Saturday, December 16, 2006 7:03 PM CST

We got bad lab results yesterday, but so many other good things happened it was easy to think about other things. Anna's AFP was 7700 so it is steadily creeping up each month on this chemo. The meeting in Houston will hopefully give us some other options. We are planning to fly down and back on the 28th. Unfortunately we are not the only parents flying around the country in search of a cure. (You Baylor folks can pray for Terrell and Leigh Saxon as they head to Vermont tomorrow with Paul.)
Yesterday a friend and her husband stopped by just in time to hold Anna while I deacessed her port. They then offered to stay so that I could run a few errands. They even brought stamps so that I could start mailing our Christmas cards. (I have a very complicated system. I address a card to whoever I get one from that day. It's not very organized, but it works--sorta.) Another friend from school stopped by with movie cards that were very much appreciated.
Last night Richard and I celebrated our 13th anniversary. Some guys would just drive their wives to the restaurant, but not my husband. After he left to take Audra and Will to the church (Jacob was sick and stayed home with Anna and Richard's folks), I put a CD into the player and was given my mission should I "choose to accept it". I was told to go to a certain perfume store where I would get my next instructions. So I drove to the store (owned by a friend) where I received a bottle of perfume and another CD. The next CD told me to drive to a certain restaurant downtown where I would meet with my "supervising agent". We had a nice dinner then I got another CD that told me to drive to a certain hotel downtown--WOW! My sweet husband had packed our bags and checked in earlier in the day. The next morning I had another CD that told me my mission was complete and that I had earned some R&R and could take the rest of the day for myself. What a great anniversary gift! (He did forget my makeup, hairspray and brush and brought a swimsuit I haven't fit into in 9 years. Hey, he's a fantastic husband, but he's not perfect!)
Thank you Richard for 13 wonderful years. I hope we will have many more.
Love, Marlo

Thursday, December 14, 2006 3:41 PM CST

God is so good! We have been trying to set up an appointment with an oncologist in Houston. Yesterday we confirmed the date and bought tickets. On the same day, I got a Christmas card from my cousins in Kansas with enough money to cover the cost of the tickets! The timing was so perfect. God knows exactly what we need. Thanks cousins!
I don't want to speak too soon, but the change in Anna's digestion since Monday is amazing. She has already gained a pound and a half. I remember last December trying to get her to 30 pounds before Christmas. Today the scales read 30 pounds! I can't wait to see what happens. Maybe she will actually grow out of some of her clothes!
We are still staying home away from crowds, but would welcome a visit if you are feeling fine.
Love, Marlo

Tuesday, December 12, 2006 7:21 PM CST

Today wasn't a bad day after all. Anna has been going strong. She was pushing her pump around in a baby stroller while she was getting her chemo. She has also been eating well. Thanks for praying for her.
Yesterday the GI doubled the enzyme she takes with her food and it seems to have helped. I will have to repeat the 3 day poop test in 4-6 weeks to see for sure. You should have seen my face when the doctor told me I had to do that test AGAIN! It seems Anna is averaging 1500 calories a day (normal for her size is 700-800). She only keeps 29 percent of her fat intake and eliminates the rest--thus it is impossible for her to gain weight. We are hoping to see some results on the scale during the next few weeks.
Love, Marlo

Monday, December 11, 2006 8:21 PM CST

We almost didn't get to start another round of chemo today. Anna's AGC was 696. According to the study she is supposed to be at 750 to start another round. Lucky for us(?) she is "off" study since we are taking the GCSF shots in between rounds (and those aren't written into the study.)
So now she is back to feeling yucky and not eating. Did I mention that I hate chemo? I have to ask myself again--is it worth it? Should I just give her some good days and stop pushing for something that is not going to happen? I don't ask these questions on "off" weeks when she is feeling good. We travel regularly between hope and despair on this ride called life.
We are starting this round of chemo with a very low immune system so I'm sure it will bottom out very quickly. I'm glad we did a lot a Christmas activities early in the month so that we can just stay home now. Pray that Anna won't have any fevers and have to be hospitalized. Pray that the other kids will stay healthy--this time last year Jacob had mono. Pray that our house would be joyful.
Love, Marlo

Sunday, December 10, 2006 4:44 PM CST

Just a quick update--no deep insights today.
I seem to be having similar tummy symptoms as Anna this weekend. Either I caught something from her or she caught something from me. Luckily we have an appointment with the GI doctor in the morning. After that appointment, she will get hooked up for another round of chemo.
I was wrong earlier this week when I said that the AFP had gone down. It actually went up a few points. Bummer. We heard from the oncologist in Houston. She is willing to meet with us to discuss treatment options, but so far there is no way to get an AFP scan. It seems they don't make them anymore.
I am thankful that we were all able to go to church this morning. Anna wore her "Happy Birthday Jesus" hat during the service and then out to lunch afterwards. I am SO thankful that we will have this Christmas together.
Love, Marlo

Thursday, December 7, 2006 9:28 AM CST

Last Sunday at the Christmas party all of the kids got gifts. I had put down ideas for each one on the RSVP and everyone got something I asked for. For some reason, Jacob was VERY disappointed with what I had picked out for him. He moped around, pouted, and even teared up when I talked to him about it. It pretty much ruined the party for him. My first response was to get angry (my usual first response unfortunately). Then I thought about his response in conjunction with the sermon I had just heard. The sermon was about pleasing God even if we don't get what we want. How many times this year have I focused on what I want (healing) and have moped, pouted, and cried when I didn't get it?
For some reason, this is God's plan for our family (it's certainly isn't MY plan). If Jacob's main goal was pleasing me, it wouldn't matter if I gave him socks for Christmas. If my goal is to please God then it shouldn't matter what he gives me. I have to TRUST that he loves me and is working out his plan for me. The thing that I want most, may not be his best for me.

Always learning,
Marlo

PS. Jacob ended up trading his gift for his brother's. When Will started playing with it and found out all the cool things it could do, Jacob came to me and said, "You know it really wasn't such a bad gift."
I hope someday I can say the same.

Tuesday, December 5, 2006 4:14 PM CST

We got an early Christmas present today. Anna's AFP went down this week instead of up. It didn't go down a lot (3,700 to 3,200) but every other week she has been off chemo, it has gone up. To us this spells T-I-M-E. Every week it doesn't go up means more time to find a cure or maybe just more time with her. We are waiting to hear from MD Anderson as to when/if they will schedule an AFP scan. Meanwhile we will enjoy this season while Anna is feeling good most of the time.
I felt so "normal" yesterday taking her to Target. I usually have to wait until Richard gets home or sometimes someone will drop by and offer to stay with Anna for an hour while I go out. She wanted everything she saw. Of course I bought way more than I planned. Today we went to the library which was another treat (that used to be routine).
Love, Marlo

Sunday, December 3, 2006 8:53 PM CST

New Photos added 12/4

Today was the Christmas party at the hospital. There were presents for all the kids, clowns, balloons, and Santa. As I was standing in line I started talking to the mom in front of me. I had seen her at the clinic, but had never met her. She asked where my little girl was so I pointed to Anna across the room. I asked her where her little girl was and she said, "She died 16 days ago." Can you imagine having this conversation while waiting in line to see Santa? Of course not. It is unimaginable what goes on in a children's hospital. Pray for Mary.

We got to see the new 2007 "Art of Living" calendars today. They are beautiful calendars made up of the artwork and photographs of children being treated at the clinic. Anna's picture is on the month of May and she has another small picture in July. If you would like to order a calendar you can visit the website at www.allyshouse.net. The proceeds go to Ally's House--a nonprofit organization that supports Oklahoma children with cancer and their families.

I want to leave you smiling so I'll tell you what Anna asked me on Saturday during the other party we went to. We were sitting in a room full of people eating our pizza when Anna leaned over to me and whispered, "Is this party just for us or is it for these other people too?" I think she was surprised to see anyone else there--I guess she is just a little spoiled to think it was all for her!
Love,
Marlo

Saturday, December 2, 2006 8:39 PM CST

We did something today that we have never done before. We ALL went to the movie theater. Thanks to Sooner Miracles and Camp Cavett for providing lunch and a movie. We had a great time.
Tonight we took our traditional drive through the Boys Ranch Town living Christmas pageant. Anna liked it so much we had to drive through two times in a row. She said, "We should do this every Christmas Eve!" If you are in the area, please go out and support the kids there tomorrow night between 7 and 9pm. It's located east of I35 on 33rd St. in Edmond. At the end of the drive we were able to meet Lynda T. whose family prays for us daily. Thank you Lynda!
Joy,
Marlo

Friday, December 1, 2006 10:59 AM CST

Well, the package has been delivered. I couldn't resist weighing it before sending it with Richard. It weighed 6 pounds! Anna only weighs 29 pounds. I wish she could keep that extra weight on her instead of "eliminating" it. Now that the test is over I will try to stop writing about poop.
We didn't make it to the clinic yesterday for labs because of the icy roads. We are just hoping that everything is okay for this weekend. We've been giving Anna GCSF shots to try to boost her immune system so that she can participate in the fun activities. Most parents don't have to consider whether or not their child has enough white blood cells so that they can go to the movies or whether their child has enough red blood cells so that she won't be too tired to go to the Christmas party. Well, for me and my new circle of friends, that is our life.
This morning I gave the kids their chocolate advent calendars from Aunt Shonda. Anna ate the chocolate from day one and then said, "I can't wait to eat the others. You're going to have to hide this." After I hid the calendars, we broke out the leftover Halloween candy to satisy her chocolate craving.
It's another snow day so we are busy having fun (with only an occasional sibling disagreement now and then.) Right now Audra is complaining that Will is playing "Mary Had a Little Lamb" too many times on the piano. It's her fault for teaching him how to play it!
Snowed under,
Marlo
New Pics added 11/30

Thursday, November 30, 2006 1:51 PM CST

New photos added 11/30

We are home enjoying a snow day. The kids were outside playing at 7:30 this morning. Anna hasn't gone outside, but she did put on jeans and a sweatshirt (the first pants she has worn in weeks.) I think the chemo must make her extra sensitive. She doesn't like to wear pants, socks, or shoes. She can barely tolerate underwear. We have to check to make sure she has some on before we leave the house!
So far we have played in the snow, had hot chocolate and apple cider by the fire, made waffles, baked cookies, played charades, watched a Christmas movie, made chili, and had a puppet show. And there's still a lot of today left......
Oops! Anna just shed her jeans. She says she wants shorts.
Oh, and about that "test" that was supposed to end today. I called the GI office and asked if we needed to brave the ice and get it there today (because I'm NOT doing this again). They said we could freeze it and bring it in tomorrow. Guess what there is a big can of on my back porch :)
Love, Marlo

Wednesday, November 29, 2006 11:24 AM CST

Twenty-four more hours to go....I've about reached my limit. I will be glad when this test is over! (See yesterday's entry if you don't know what I am talking about.)

It's funny. Some days I try to pass on spiritual lessons I have learned (and there have been many). I try really hard to communicate truth and hope that what I have learned will help someone else. Then some days I write about lost teeth and poop. I received so many messages of affirmation after yesterday's post. I guess it was something everyone could relate to!

We were humbled and blessed this morning with a phone call. Someone had called several weeks ago and asked about Anna being the beneficiary of their school's fund raiser this year. I didn't call back because the event is in February and at the time we weren't sure if Anna would make it until then. I finally called her back last week and she told me they had already chosen someone else. "That's okay," I thought. God can provide for us any way he chooses. Well, today she called me back and told me that she was wrong. The kids had taken a vote and chosen Anna unanimously. I started crying on the phone. I was so touched! This journey we are on seems like a marathon without an end. We are SO thankful that God renews our strength and blesses us along the way.
Love, Marlo

Tuesday, November 28, 2006 8:18 AM CST

It was a big day at our house yesterday. Will's teacher pulled his first tooth at school then Audra pulled out one of her teeth when she got home. The tooth fairy was busy last night! Both of them left notes asking her to please leave the tooth (with the money) under their pillows. We found out with Audra's first tooth that she becomes very attached to them. That first one even had a name. When Audra woke up and it was gone, it was very traumatic. Fortunately, the tooth fairy "dropped" it by the door when she was leaving so Audra got it back. Now we just write a note asking the tooth fairy to please not take the teeth. WHATEVER!
This week I am finally doing the 3 day poop test. I realized that there would NEVER be a "good" time to do it so I might as well get started. Let me tell you, it is not fun. The hardest part is writing down everything Anna eats since she tends to graze all day long. If we miss even one poop we have to start the test all over. Yikes!
Enjoy today.
Love, Marlo

Monday, November 27, 2006 11:58 AM CST

This morning seemed to be just another Monday. The kids and I were headed to the clinic for labwork. Then Will said, "This is one of the most excitingest days of my life!" I had no idea it was such a special day, but to Will it is. He has his first loose tooth. He has been working on getting it really loose so that his teacher can pull it when he gets to school. As he says, "She's the best tooth puller at our school." So when you think that it's just another day, remember that for someone it's one of the most "excitingest" days of their life.
Anna's counts are low, but she didn't need a transfusion today. We will check again on Thursday.
Love, Marlo

Sunday, November 26, 2006 8:28 PM CST

"the grace of God is with you no matter what happens." (1Pet 5:12)

Someone today asked me what our plan was and I realized that we don't have one. Last week we heard about a new test called an AFP Scan that can locate the source of elevated AFP. Anna needs this test because her AFP is high, but we can't find the source. Usually these tumors can be seen with CT scans, but not hers. Unfortunately, because this is such a "cutting edge" test we haven't even found a place to have one. She may be the first hepatoblastoma kid to have one IF we can find someone to do it.
We may also be taking a trip to Houston to meet with an oncologist there who suggested several Phase I studies Anna could try.
I KNOW God can heal Anna without chemo or surgery. So far he hasn't, but that doesn't mean he won't. How can I stop hoping and praying for a miracle? I can't.
Love, Marlo
PS. Anna started my day off right. While I was getting dressed (it was my day to stay home from church with her), she said, "Mom, when you wear those jeans you look like a teenager." I'll probably be wearing those jeans from now on!!

Saturday, November 25, 2006 8:48 PM CST

We are back home from the holidays. We went over the river and through the woods to grandmothers house in Kansas. We were glad to be able to go. We didn't leave until Thursday morning because we had to wait for chemo to be delivered.
I was asking the kids today what they liked best about Grammy and Papa's house.....
Audra---"the M&M machine"
Anna---"Grammy!"
Jacob---"playing with Kory" (his cousin)
Will---"the lamp you can turn on and off just by touching it" (he was totally serious)

I had to continue to adjust my attitude. I could choose to make myself sad by thinking this might be Anna's last Thanksgiving OR I could be thankful that she was here at all, since we thought we had lost her back in March. (Really, each day since then has been a bonus.) Mostly I was thankful, but I did take a lot of pictures to capture the memories. Let me tell you, taking "last" pictures all the time stinks.
Well, I have a little girl who is waiting to snuggle with me. Because as she says, "I haven't snuggled with you all day."
Love, Marlo

Tuesday, November 21, 2006 8:17 PM CST

"Are any among you suffering? They should keep praying about it. And those who have reason to be thankful should continually sing praises to the Lord." (James 5:13)

If you have reason to be thankful this week, sing praises! If you are suffering, keep praying. It's never one or the other. Our lives are always a mixture of suffering and thanksgiving.
Audra was sick earlier this week and now it's Will's turn. He has a fever and a tummy-ache. Hopefully he will feel better tomorrow and no one else will get it.
Anna's AFP went down to 5300 after a week on the chemo. Her liver numbers (AST and ALT) are elevated so she may need a biopsy at some point. I am VERY wary of biopsies after our experience earlier this year. Hopefully those numbers will go down this week. (They've been going up, but stayed the same this week.)
Love,
Marlo

Monday, November 20, 2006 3:49 PM CST

"Look here, you people who say, 'Today or tomorrow we are going to a certain town...' How do you know what will happen tomorrow? For your life is like the morning fog---it's here a little while, then it's gone. What you ought to say is , 'If the Lord wants us to, we will live and do this or that...'" (James 4:13-15)

I gave up saying "Next year we will do this....", then I stopped saying, "Next month we will do....", I've even stopped saying "Next week...". I confess I still plan for tomorrow, but I know that even those plans can change. God continues to teach me to live today. Today the kids are "helping" me unpack the Christmas decorations. They love playing with the nativity scenes and since I have about twenty, I find baby Jesus and Mary all over the house. Yesterday Joseph, Mary, and the angel (their little girl) were sitting on the piano. Anna told me that they were on the "Piano" ride at Disneyworld. The Holy family is sure to have many adventures at our house this Christmas.
Anna, Will and I spent the morning at the clinic getting hooked up for another week of chemo. I was SO HAPPY that her hemoglobin was good and she shouldn't need a transfusion this week. That means we don't have to go back until next Monday!!!! Anna is neutropenic so that means no crowds for her, but we can stay home and enjoy being together. Pray that she won't have any fevers this week so that we can stay out of the hospital for Thanksgiving.
Grateful,
Marlo

Saturday, November 18, 2006 10:00 AM CST

Here's one of my favorite songs.....

Every evening sky, an invitation
To trace the patterned stars
And early in July, a celebration
For freedom that is ours
And I notice You
In children’s games
In those who watch them from the shade
Every drop of sun is full of fun and wonder
You are summer

And even when the trees have just surrendered
To the harvest time
Forfeiting their leaves in late September
And sending us inside
Still I notice You when change begins
And I am braced for colder winds
I will offer thanks for what has been and what's to come
You are autumn

And everything in time and under heaven
Finally falls asleep
Wrapped in blankets white, all creation
Shivers underneath
And still I notice you
When branches crack
And in my breath on frosted glass
Even now in death, You open doors for life to enter
You are winter

And everything that’s new has bravely surfaced
Teaching us to breathe
What was frozen through is newly purposed
Turning all things green
So it is with You
And how You make me new
With every season’s change
And so it will be
As You are re-creating me
Summer, autumn, winter, spring

(Every Season, by Nichole Nordeman)

I LOVE the change of seasons. You can see God in each one if you look.
Here we are braced for colder winds as we received yet another high AFP--6,244. The chemo seems to help only while she is actually on it. The number goes up as soon as the chemo stops. We are going to have to decide if we want to try surgery or an experimental chemo. It's hard to do either, but the alternative is to just let her go which seems impossible to do at this point. We are so blessed TODAY so we are trying to live in the present and not fear the future. This is the prayer I wrote in my journal today,
"The people of Israel said, 'All hope is gone,' but you are a God who can breathe life into dry bones and make them live again (Ezekiel 37). Over and over I have thought all hope was gone with Anna then you have raised her up and given us hope again. Lord, show us what to do....Guide each step we take. I know you CAN heal her. I also know you will do what is best for her (whether or not that involves healing her). I can't understand you, but I can trust you."
We continue to trust, even though we don't understand.
Marlo
PS Thank you to everyone who helped make last night so special for Richard (and me!) We had a great time.

New Photos added 11/18

Thursday, November 16, 2006 7:14 AM CST

"When darkness overtakes the godly, light will come bursting in." (Ps 112:4)

We had a great day yesterday. We were able to go hear one of our favorite groups in concert last night--Selah. I was so overwhelmed with emotion during some of the songs. They brought back feelings I had as I listened to them over and over during some VERY long nights at the hospital. Thanks to those of you who took care of our kids so that we could go last night.
Anna got her flu shot and another dose of chemo yesterday. She is really doing much better than she was on Monday. She even seems to be keeping her food inside her for longer periods of time. Thank you for praying specifically for that! We are praying that her weight will start going up. The most she has ever weighed is 30 pounds.
Thank you to those responsible for Richard's office decorations yesterday--especially the prune tree! How funny! Thanks L for bringing yogurt and donuts for breakfast Tuesday. Thanks K for coming to play with Anna during her chemo. Thanks S for picking up our 200+ pictures from Sams. I appreciate EVERY blessing we receive throught the generosity of our friends--and strangers.
Love, Marlo

Wednesday, November 15, 2006 8:02 AM CST

Happy Birthday Richard!!!!!!!

Why my kids love their dad.....

"He plays with me and helps me put my Bionicles together." (Will)

"He gave me a nickname and he takes time to play with me." (Audra)

"Because he's the best daddy in the whole world." (Anna)

"Because he's always there for me when I need him." (Jacob)

We love you!!!!!!
Marlo

Monday, November 13, 2006 3:02 PM CST

We started another round of chemo today. I appreciate our sweet nurses who are working 10 hour days to make up for the 2 nurses who are out right now. They got us in and out in time to meet the bus after school. Thanks!
We also saw the GI doctor today. When he walked in, Anna was sitting on the exam table watching a movie on her portable DVD player (every kid with cancer should have one) and eating a chicken wrap. She told him why we were there and then went back to her movie. We now have a NEW test to do which should prove to be very....interesting. I have to write down everything she eats and collect her poop for 3 DAYS! Trust me, that's a lot of poop. Anna's body is malnourished because the food goes right through her. She is always hungry but gets sick with cramps shortly after she eats. This is probably related to the Whipple procedure she had with her last transplant. Pray that we will find a way to help her digest her food.
I was thinking that this GI stuff was really the only thing that was wrong with Anna right now and then I took her to Sunday School. Seeing her next to the other 4 year olds was kinda sad. She is so small and frail. People think she is a baby until they hear her talk. She is so smart and funny. I know someday she will have a strong body that can run and play. I just don't know if it will be on this earth.
We want to give a BIG thank you to the Make A WIsh foundation of Oklahoma that sposored our trip. It was just what it was supposed to be. THANK YOU.
Love, Marlo

New Photos added 11/13

Saturday, November 11, 2006 7:59 AM CST

"Do not throw away this confident trust in the Lord, no matter what happens. Remember the great reward it brings you! Patient endurance is what you need now, so you will continue to do God's will. Then you will receive all that he has promised." (Heb 10:35-36)

We are back to patient endurance as we re-enter our "real" world. It was SO nice to not think about any medical "stuff" for a whole week. We made a slide show of our pictures on the computer. Anna said, "I can't look at those. It makes me sad. Can I make another wish and go back there someday?"
We start another round of chemo on Monday. The scans were all clean except for suspicious (very small) spots on her lungs. The surgeon wants us to do another round of chemo and "see what happens". We were thrilled with the last drop in AFP and hope that will continue. They say that this type of cancer cannot be cured by chemo, but only by surgery so we anticipate a lung surgery at some point in the future. Hopefully we will be able to enjoy the holidays AT HOME.
Love, Marlo

Thursday, November 9, 2006 3:52 PM CST

It's good to be "home-home" again. We had a great week. I didn't think about tests or death or surgeries all week. (Other than to think, "Hey, I'm not thinking about tests or death or surgeries!") All we had to think about was which ice cream we wanted or what fun thing we were going to do next. There was SO much to do. We couldn't do it all so we tried to do as much as we could. I think I only answered my cell phone twice all week because we were too busy (or too tired.) I did break down and cry at least one time--when we met Goofy. It was so cool to see Anna's dream come true. He gave her a big hug and she sat on his lap. She wasn't a bit afraid. (She wouldn't have anything to do with Pluto though.) There's so much more to tell about, but I have to go get vanilla pudding so Anna can take her pills.
Thanks M and K for a clean house. Thanks Sittie and Pop for the movie and groceries. Thanks S&S moving guys for moving the old bed to storage. Thanks Grammy and Papa for the new bed. Thanks K family for watching our other "baby". We have SO MUCH to be thankful for.
Love, Marlo

Monday, November 6, 2006 5:42 PM CST

Marlo doesn't have internet access right now, but wanted all to know that they are doing well. Anna is feeling okay and is enjoying herself, along with the rest of the crew. Will was lost, but was found quickly. Thanks for checking on them and praying for the AFP to continue to drop! Thank you God, for your blessings! -Shawna

Thursday, November 2, 2006 9:24 PM CST

Counting today's blessings.....
*My friend S driving all the way to the hospital to pick up Will and get him to school on time.
*Our children's minister K, playing hide-and-seek with my kids in the back yard after school so they wouldn't drive me crazy.
*A new pair of shoes from the Kirkland faculty so that I can "dance around Disney." How did they know I needed some comfortable shoes? And how did they know my size?????
*Leftover Nigerian rice for dinner from my friend N. (We had leftover lasagne too from M and N, but I froze that for when we get back!)
*A new Sponge Bob video for the airplane ride.
*Clean scans so far....
*And an AFP of 2,000!!!! (Down from 4,700)

My cup overflows......

Anna still feels "bad". Pray that she will perk up tomorrow and that she won't have any fevers.

Thank you, Thank you, Thank you
Marlo

Wednesday, November 1, 2006 3:47 PM CST

We finished our tests!!!!! Unfortunately we still have to spend a few hours at the clinic tomorrow. As you can see from the pics, Anna is looking a little "droopy". She has been very tired for the last few days. I had them check her blood today and she needs a transfusion. We will have to go in tomorrow and get that. I'm glad that she will get what she needs and hopefully have a little more energy. I can't believe we have to go BACK to the hospital four days in a row. I am trying to pack tonight, but things look a bit crazy right now. A very sweet friend offered to clean my house while we are gone so I will try not to worry about the dirt and concentrate on packing enough clean underwear.
Everyone at the hospital has been trying so hard to help us get away for a few days. Thank you!!!!!!
Love, Marlo

Tuesday, October 31, 2006 9:54 PM CST

"He fills my life with good things." (Ps 103:2)

Two tests down and one to go. We will report to the hospital tomorrow at 9am and wait until they can fit us into the MRI schedule. Anna has to be NPO so we hope we will not have to wait all day.
She did great today during the bone scan. She hasn't been feeling very well, which is understandable since she doesn't have any WBC (white blood cells) right now. Pray that her counts will start back up soon. We are giving her shots to stimulate her bones to produce WBC, but so far her body hasn't cooperated. We are VERY thankful that she hasn't had a fever.
Tonight Anna stayed home with Sittie and Pop while we took the other kids to church for "Trunk or Treat." Richard won a prize for his Goofy costume and Jacob won a jar of M&M's because he guessed closest to the number that was in there (almost 2,000). We had a lot of fun and took candy home for Anna.
Love,
Marlo
PS. I made a mistake in the website I gave you the other day (another reason I don't usually post those). The correct way to enter it is JourneytoJoshua.blogspot.com If you need a bright spot in your day, go look at the picture of my friend Marianne when she meets her new son for the first time.
Can you imagine?!!!!!

New Photos added 11/1
Happy Birthday Grammy!

Monday, October 30, 2006 8:11 PM CST

We made it through the PET scan. Anna actually fell asleep for the last 15 minutes, which I hope made for extra clear pictures. We don't know any results yet.
Tomorrow should be easy. She will be injected with radioactive dye and then we have to wait two hours before they take the pictures. Lucky for us there is a big Halloween party at the clinic and Anna can eat during those two hours.
Love, Marlo

Sunday, October 29, 2006 6:35 PM CST

Snow White, Ariel, and the Fairy Godmother just left. They arrived bearing gifts, pizza, and an invitation to Disneyworld. It was all very exciting. Anna was a bit overwhelmed. Thanks Kay and Arlene for giving us such a nice send off.
Anna has been in a lot of pain this weekend. We think it is just GI stuff, but aren't sure. Her counts are probably really low so that makes her feel puny as well. We are hoping she feels better as the week goes on. Pray that her little body will recover as she gets a break from the chemo.
Love,
Marlo
Prayer requests--
Monday: PET scan
Tuesday: Bone scan
Wednesday: MRI

Saturday, October 28, 2006 11:39 AM CDT

The suspense is building.....with the help of our fairy godmother, we are planning to surprise the kids tomorrow evening. Several people have suggested just waking them up on the day we are leaving and telling them then. That might work if EVERYONE we know didn't already know (thanks to this website!) We also want Anna to have something to look forward to as she endures another battery of tests (and fasting) this week.
Anna enjoyed her very first sleepover at her grandma Sittie's house last night. I haven't talked to her yet, but from what I've heard there wasn't much sleeping going on. I predict a long nap this afternoon.
Pray for good health for the WHOLE family this week.
Pray for painless shots as we start those up again today.
Pray for good pictures from these tests. If anything is there, we want to see it!
Love, Marlo

PS. There is one new photo on the photo page.
PS-2. I don't usually post other people's websites unless I have their permission, but I don't think these friends will mind. If you want a fun read go to JourneytoJoshua.blogspot.com
Some friends of ours are in China adopting a little boy. Pure joy!

Friday, October 27, 2006 10:18 AM CDT

FYI--the kids don't know about the trip yet so please don't mention it. We are trying to plan a special way to tell them. Thanks!

Thursday, October 26, 2006 4:53 PM CDT

Oh my! Next week is going to be crazy, but it looks like it will end at Disneyworld! On Monday we have a PET scan, Tuesday a GFR and bone scan, Wednesday we will be admitted to the hospital for a MRI. We are gathering all of this information for the doctors to sort through while we go on VACATION!!!!! They will have a few days to decide whether we should do surgery, or more chemo. If they suspect tumor anywhere outside the lungs, we will do more chemo. If they can't find it anywhere else, we may go straight to Delaware for surgery.
We will continue to take things one day at a time.
But right now I've got to go help with pumpkins, finish making dinner, and get ready for open house at school tonight.
Love, Marlo

Thursday, October 26, 2006 2:31 PM CDT

"Don't be impatient for the Lord to act! Travel steadily along his path."
(Ps 37:34)

We continue on. The surgeon can see two spots on Anna's lungs --one on the right and one on the left. He can't see anything anywhere else, but he wants to do all he can to rule out that possiblity. Before he will do surgery, he wants a PET scan and an MRI. We agree that we don't want to put Anna through the pain of surgery if there is widespread disease and no hope of getting it all. The PET scan is scheduled for Monday morning. It will be difficult to get an MRI scheduled before we leave on our trip. If I had my way, we would get the MRI, go to Disneyworld, then go straight to Delaware. If we have to wait for an MRI appointment that will not be possible. Is this a bad time to go on a trip or the perfect time? Hard to tell... Anna's AFP this week was 4,700 so the chemo is able to hold it down for now. Of course tomorrow is the last day of chemo. We will have to move quickly on surgery or a new chemo. It's all a lot to think about.
Marlo

Wednesday, October 25, 2006 3:43 PM CDT

Anna seems to be feeling better today. She ate more than yesterday and hasn't complained as much. She has two more days of chemo this week. Pray that her body will finish strong.
Our Disney trip is still "up in the air". We haven't cancelled it, but we haven't told the kids either. We should know more after the Delaware team looks at the scan tomorrow. The written report we got today mentioned "multiple noncalcified pulmonary nodules in both lungs that appear stable in size." Nothing was noted in the liver or brain which is good.
The question remains, IF they can do surgery, do they need to do it ASAP or can it wait until the 10th?
Not packing yet,
Marlo

Wednesday, October 25, 2006 8:02 AM CDT

Anna didn't feel good yesterday and then she started saying that the room was going in circles. I was afraid her hemoglobin was low so I took her to the clinic at 3pm. She was very low so they admitted her for a transfusion. It took a long time because they had to go outside the hospital to get the right match. (If you've ever thought about donating blood, please do. You can help people like us!) We finally got the blood at 8pm then it took 3 hours to go in. Anna is still asleep so I am hoping that she will feel better when she wakes up.
The only thing we know about the CT scan so far is that there are no obvious tumors anywhere (Praise God). They will be looking at the scans in more detail today. We will overnight a copy to Delaware tonight and let them evaluate them as well. If they can't find where the cancer is, they can't do surgery. My greatest fear was that they would see cancer everywhere and that didn't happen. So our lives didn't change drastically like I thought they would. There is just more ambiguity--but I am learning to live with that.

"You must learn to live with the insecurities of life. But know this; I am secure. I am certain. In the storm I am your Rock that cannot be moved. I am your God."

Resting,
Marlo

Monday, October 23, 2006 7:06 PM CDT

Oh, I felt so blessed and prayed over as I read the guestbook today. Thank you, thank you!
We made it through the day with very little crying (and none from me!) I had to use one prize to get Anna to finish drinking her contrast and one to convince her to hold still for a few more minutes during the scan. The only bad part about today was having to get the chemo after the scan (instead of before) which put us there an extra hour.
Thank you to Leslie and MaryAnn for helping with the other kids and Leslie G. and Lydia for visiting us in the clinic. It was not a bad day after all. (Sometimes when I expect the worst I am pleasantly surprised.)
We don't have any results yet so we will sleep tonight in blissful ignorance.
Tired,
Marlo

Sunday, October 22, 2006 7:27 PM CDT

"Satisfy us in the morning with your unfailing love, so we may sing for joy to the end of our lives." (Ps 90:14)

What a wonderful service this morning! Anna woke up and got dressed right away. When it was time to put on her lacy pink socks and black mary-jane's she started crying. Those were not the shoes she wanted! She finally decided on black cowboy boots. She made a new fashion statement in her black velvet/pink tafeta dress and her brother's old boots. Of course by the time she sang, the boots were long gone and she performed in her socks. We had another problem when she fell asleep during the sermon (sorry Craig). She didn't want to wake up to sing. ( "I'm too tired to do it." ) After all of that, when the time came, she did beautifully. She sat up on a stool, held the microphone, and sang her little heart out. We were so proud of her. After the song, they had a special time of prayer for us and for anyone else who had physical needs. Thank you church family for that special time. We won't forget it.
Pray for us tomorrow. It will be a long day. We have to report at 12:30 to start drinking the contrast for the CT. Then it's upstairs to the clinic to get hooked up for an hour of chemo. Then it's back downstairs at 2:30 for the scan. The two hardest parts will be not eating all day (she is always hungry) and holding still for the extra long CT scan (usually they do the head scan on a different day, but we need it ASAP so they agreed to do everything at the same time.)
The two possible outcomes that I see are 1) the cancer is contained to one or two lung nodules and they can try to get it with surgery, or 2) the cancer has spread and there is nothing more to do. Of course I know that God can do beyond what I ask or imagine and the outcome may be something that I haven't thought of.
Waiting,
Marlo
PS. There are more new photos on the photo page.

Saturday, October 21, 2006 8:54 PM CDT

Well, Anna is dressed. Now we just have to get her to take it off and go to bed. I was out shopping for prizes/bribes to get us through the CT on Monday and I happened upon the perfect dress. She loves it (well, she loves it tonight anyway). I had to promise Audra that she would get a fancy dress when/if she sings a solo.
Waiting,
Marlo

Friday, October 20, 2006 12:04 AM CDT

"Be careful! Watch out for attacks from the devil, your great enemy. He prowls around like a roaring lion, looking for some victim to devour. Take a firm stand against him, and be strong in your faith. Remember that your Christian brothers (and sisters) all over the world are going through the same kind of suffering you are." 1 Peter 5:8

The fear that I had victory over yesterday is just waiting to consume me. I have to fight against it every minute and stand firm. Pray that our minds will be filled with truth and not full of despair.
Last night we took the kids to "Soup or Salad" for dinner. Anna thanked us for taking her out to eat (one of her favorite things to do.) She chose to have watermelon, baked potato, and two ice cream cones. Today she wants watermelon again........
I finished the chemo for this week and the nurse has been here to take out the needle. Anna and Audra are in the tub--the first thing she wanted to do after being deacessed. The boys are going down the stairs in their sleeping bags. It's time to fix lunch. Gotta go.
Marlo

Thursday, October 19, 2006 4:14 PM CDT

I called Richard this morning and said, "We have a big problem." The girls were playing Barbies and we only had one boy doll. Anna was crying, "I need a husband!" Smile.
We have enjoyed a day with everyone at home (Fall break). We stayed in our pajamas until lunch time and watched a movie while I hooked Anna up to her chemo. After our bad news on Tuesday I walked around crying and feeling like I was going to throw up for about 36 hours. Praise God, he helps us carry our burdens!!!!! Thanks to your prayers, my prayers, God's word, and the reminder that this is from Him--I am able to function again--even laugh!
Last night the three younger kids had a slumber party. Their laughter was music to my ears this morning as they took all of the covers off the beds and made a BIG mess. I got some good pictures of them snuggled up together--what a gift! We have been given seven precious months with Anna since March 18 when I kissed her goodbye (after her aneurysm). Of course I want more. I want Halloween, Disneyworld, and Christmas. If I get all of that will I be ready to say goodbye then? Of course not. Anyway, today is not the day.
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes." (Matt 6:34 msg)
One more day of chemo this week then we have a full body/head CT on Monday. That will tell us whether or not she is a candidate for surgery.
If you want to come hear Anna sing on Sunday, she will be near the end of the service (which begins at 10:45). There are no guarantees that she won't have cold (or stubborn) feet and decide she can't go on. She will, however, be happy to sing for individuals or small groups whenever she is asked.
Breathing and walking,
Marlo

Wednesday, October 18, 2006 8:44 AM CDT

The Psalmist cried out in Psalm 88 -- "My soul is full of trouble and my life draws near the grave....I call to You, O Lord, every day,...From my youth I have been afflicted and close to death..."

The news was bad yesterday. Anna's AFP on Monday was 5600, which is higher than when we started this new chemo a month ago. We lost everything we had gained in one week. Clearly the cancer is highly-resistant and is very aggressive. To top it off, Anna had a rough day yesterday and just didn't feel well all day and last night.

We really aren't sure what the next step is supposed to be. We're trying to get a CT scan quickly, decide whether we could get all the cancer surgically, and whether any other chemos would be beneficial.

The apostle Paul told the Colossian church that from the day he first heard of them, he had not stopped praying for them and asking God to fill them with the knowledge of His will through all spiritual wisdom and understanding so that they would live lives worthy of the Lord, bear much fruit, have patience and endurance in trials, and be joyful and thankful in all circumstances (Col. 1:9 and on). I guess that is what we need right now. Knowledge of the Lord's will, patience, endurance, joy, and gratitude. And a miracle.

Waiting,
Richard

PS. Anna is scheduled to sing her little song this Sunday at Northwest Baptist Church, OKC. This is conditional on her feeling good enough to go, and on her willingness to get dressed that morning. We will try to videotape it so that we can put in on the website.
Thanks for your prayers and notes.
Marlo

Monday, October 16, 2006 7:46 PM CDT

I feel better tonight now that Anna is back on chemo--crazy isn't it? She has had a good day. She wasn't very happy when I woke her up, poked down some meds, slapped on the "magic" cream, and told her we were going to the clinic and that she couldn't eat breakfast. That's enough to make anyone grouchy!! Once she was able to eat and she got to pick a prize from the basket, she was happy again. (I wish a little food and a little shopping could fix my feelings, but I've tried it and it doesn't work.)
We left the clinic around 1pm. I thought she would fall asleep in the car, but when we were driving by the mall she was still awake so I stopped. We had fun shopping for clothes and then enjoyed a cinnamon pretzel by the fountain. It was great!
Right now Anna is still going strong. She and Audra are playing in the bathroom with their Barbies.
The future is still uncertain, but we were gifted with another day.
Love, Marlo

Sunday, October 15, 2006 8:58 PM CDT

"Do not be afraid or discouraged for the Lord is the one who goes before you. He will be with you; he will neither fail you nor forsake you." (Deut. 31:8)

We will start round two of the new chemo tomorrow. The first day will be at the clinic and then the rest will be given at home--every day for two weeks. Pray that I will not make any mistakes in the administration of the drugs. Pray also for peace as we wait for another AFP result.
Praise--Anna hasn't complained of any more chest pain.

Fear not,
Marlo

Saturday, October 14, 2006 9:04 PM CDT

"Whether it rains, whether it pours,
Wherever I go, I will trust you Lord.
In the light of day, or in the dark of night,
I will trust you Lord with all my life."

Those are the words to the little song Anna keeps singing over and over to anyone who will listen. I had to sing them myself the other night as I was once again overcome by fear. The future seems so scary sometimes.
I am still trusting God, but it is a DAILY struggle to look up instead of looking at what is happening around me. I do NOT want to live in fear. The best way I have found to calm myself is to read back over the verses I have written down during the past 20 months--to remind myself of God's faithfulness and his power.

Here's my personal journal entry from August 26.

"I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be astounded. They will put their trust in the Lord. Oh, the joys of those who trust in the Lord...." (Psalm 40:1-4)

(Lord you will do a miracle either way. You will either heal Anna or if you take her, you will lift me out of the pit of despair and give me a new song to sing. I trust you.)

Trying to trust,
Marlo

PS. Be sure to check out the new pics on the photo page.

Friday, October 13, 2006 4:07 PM CDT

The other day Vickie wrote in the guest book that I was blessed to have Anna. I have been thinking about that. When your child has cancer you feel anything but blessed. As I have spent time with Anna I have begun to think I AM blessed to have her. She is such a joy. No matter how long I have her, I want to feel blessed--not cursed. Thanks for the reminder Vickie!
My mom came down today to help out. As soon as she got here, Anna started asking when I was going to leave. She loves babysitters! I don't take it personally. She is just a "people" person and she doesn't get out much so she loves it when people come over. Thanks for the clean sheets and cupcakes Mom!
Love, Marlo

Thursday, October 12, 2006 4:05 PM CDT

We have had a good day--with some new pains that I'm trying to ignore and hope they will go away.
Last night at choir Anna went into the sanctuary and tried out for a solo in front of the music minister. She has been walking around the house singing a song she learned in Sunday School. I asked her if she would be willing to sing it in "big church" in front a lot of people. She said "Sure." After she sang for Doug, we were walking out and she asked, "When am I going to sing into a microscope?"
Today we went to the Paint 'N Station while the other kids were at school. Anna had a great time. (Thanks Misty.) We made a lot of special keepsakes including a nativity scene with Mary, Moses, and a pink Jesus. (I just assumed it was Joseph, but Anna told Richard it was Moses.)
Hoping for a quiet weekend.
Love, Marlo

Wednesday, October 11, 2006 2:58 PM CDT

This is what the Lord says: "Cursed are those who put their trust in mere humans and turn their hearts away from the Lord...But blessed are those who trust in the Lord and have made the Lord their hope and confidence. They are like trees planted along a riverbank, with roots that reach deep into the water. Such trees are not bothered by the heat or worried by long months of drought. Their leaves stay green, and they go right on producing delicious fruit."
(Jer 17:5-)

I want to be like that tree!
How quickly things can change. I have been taking these good days for granted and planning things that I want to do in the days, weeks, even months ahead. Last night Anna started screaming with chest pain and all of my plans came crashing down. When you have a child with a tumor in their lung you just assume the worst.
I was trying to decide whether we would go to the Zoo, Ms Shelley's or the Paint 'N Station today. Instead we spent all day at the hospital getting labs, xrays, and seeing the doctor. After all of that, they couldn't find any reason for the pain. All of her liver numbers looked good. Her AFP stayed the same from last week--not good, but better than going up. She is no longer neutropenic so she can go to choir tonight. She seems to be feeling better and has stopped complaining of so much pain. So it was a long day at the clinic for ...what?
No Zoo tomorrow since it is supposed to get cold, so MAYBE we will get to go paint instead. I'm not making any plans though.
Love, Marlo

Tuesday, October 10, 2006 1:23 PM CDT

We went to the clinic yesterday and Anna is STILL neutropenic. That's not so bad because she feels great, but if her body doesn't start making those white blood cells before Monday it is going to throw off her chemo schedule. We know what happens when she is off chemo--that old tumor starts to grow! We don't want to wait another week. It would also mess up our trip. Pray that her body will recover and that the docs will okay the use of the GCSF shots after the next round of chemo. As much as we hate the shots, it's better than being neutropenic for two weeks.

Marlo, "Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your heart and mind as you live in Christ Jesus." (Phil 4:6-7)

PS. While I was typing the verse above, I got a call from the clinic. They are letting us start the shots today through Saturday to try to boost her up before Monday. Yea...shots! Yuck...shots!

Sunday, October 8, 2006 9:23 PM CDT

"set your sights on the realities of heaven, where Christ sits at God's right hand in the place of honor and power. Let heaven fill your thoughts. Do not think only about things down here on earth...and always be thankful...Sing psalms and hymns and spiritual songs to God with thankful hearts...(Col 3:1, 15, 16)

I have tried to focus this weekend on being thankful. I have SO much to be thankful for. We have had a great weekend. Earlier this week I did NOT have a thankful heart. I was feeling unappreciated and overwhelmed. That night after the kids went to bed I was cleaning the kitchen and reading a book (multitasking!) The book I was reading was about Sabina Wurmbrand who was imprisoned in Romania by the Communists for her work with the underground church. The page I was on said,
"People learn what it means to be on this earth with nothing to do when they enter prison. Not to wash, or sew, or work...We had nothing even to look at. Time did not pass. It stood still...A mother understands when the children leave home what a joy working for them was, what wretchedness it is to have nothing to do."
Her observations certainly changed my perspective!

Thank you Lord for all of the work I have to do. Someday I will have clean house and will long for these days when my children were young. What a joy it is to have something to do. Even though there are times I feel like it's too much (okay, that's most of the time), it's better than having nothing to do.
Amen
Marlo

Friday, October 6, 2006 1:32 PM CDT

We spent the morning at the hospital. First we went to the clinic for labs. Anna is STILL neutropenic. I asked the doctor if we could PLEASE give her the GCSF shots after the next round of chemo. We chose this chemo because it would allow her to have a good quality of life (and hopefully kill cancer cells at the same time.) When she is neutropenic she can't be in crowds so this definately limits what she can do. He has to check with Dr. Meyer because evidently GCSF isn't written into this study because "no one" has low counts with this chemo. Well, WE DO!
After labs, we went to see the GI ("tickle doctor"). He gave us some things to try to help with Anna's continuing back pain. Anna and Will enjoyed tracing around their bodies on the paper covering the exam table. We had some pretty fancy artwork by the time the doctor came in.
After all of that, we met Daddy at the Bricktown Sonic and enjoyed lunch by the fountain. That made Will late for school, but I think he will be able to catch up. Speaking of Will---the other day he asked me, "How does Mrs. Reaves know everything I do? Do you talk to her on the computer?"
Have a great weekend.
Love,
Marlo

Wednesday, October 4, 2006 8:29 PM CDT

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus."
(Phil. 4:6-7)

Today has been another good day for us. We visited Ms Shelley this morning under the pretext of working on my scrapbook. Anna soon made herself at home in the bathtub. When I got back from taking Will to school she was running around in her underwear. She and Ms Shelley played while I managed to put a few pics in an album. Anna wants to know if we can go back tomorrow:)

We talked to our team in Delaware and as long as the AFP is going down they are okay with continuing this course of action. We will be checking it every week. If it starts going up they want a CT scan to see whether or not they can do surgery. For that reason, we haven't told the kids about Disneyworld yet. Pray that the AFP will continue to drop during the next four weeks!
Love, Marlo

Tuesday, October 3, 2006 8:40 AM CDT

Just a quick praise this morning. Although Anna is still neutropenic (come on WBC start fighting), we found out that her AFP dropped again--yea! It was 3735 last week and 2534 this week. That's still WAY above normal (10), but it didn't go up. That means we can stay on this chemo for another round, go to Disneyworld, and then schedule surgery????? That's really too far in the future to be planning (one month), but I'm feeling good today so I'm thinking ahead. I remember when I used to plan my life years ahead of time. God continues to teach me to live in today. Today---soccer, piano, a haircut for the dog, and who knows what else!
Love, Marlo

Monday, October 2, 2006 11:47 AM CDT

Oh please, Lynda--Hebrews 11---don't put me there! I just finished reading a book about 8 women of incredible faith. As I read I thought, well, I have never been kidnapped, forced to marry someone outside my faith (when I was already married), beaten by my father and brother, imprisoned, or had my husband and sons burned alive. I've never even slept on the ground, gone hungry, or had my house burned down. These were just a few of their experiences and they happened in our lifetime! I am in a comfortable house surrounded by my family. I have a bed to sleep in and plenty of food. I can attend church any time I want to. My children are not hungry. No, I am not a hero of the faith and I don't want to be. I am just one of many who are fighting this battle.
Today's visit to the clinic turned into a party with Ms Kay, Coach Stoops and some of the OU players. It would be a fun place to visit if you didn't have to get poked every time! Anna's hemoglobin went up to 9 so we don't have to have a transfusion tomorrow--yea! We will check it again on Thursday.
Love, Marlo

PS. Funny things the kids said today.....
Anna was singing a song. I recognized the tune, but not the words...
"There's a wig in my heart!" (otherwise known as "Don't go breakin' my heart")

Will said, "I'm as old as Jacob was when he was six." (Can't argue with that!)

Sunday, October 1, 2006 4:35 PM CDT

"Whatever happens...may the Lord give you joy." (Phil. 3:1)

I have been listening to a sermon series on Joseph. Can you imagine being sold into slavery by your brothers?! Then came 12 years of slavery and imprisonment--quite a trial wasn't it! I'm sure if he had known that all of his suffering would lead to a chance to tell the pharoah of Egypt about God and to become the second in command, he would have said "Bring it on Lord. I can take it." But HE DIDN'T KNOW HOW IT WOULD END. If I knew how my circumstances would end--what "good" God was working in and through all of this--it would be so much easier. But God does not tell us the end of the story. We have to keep walking by faith just like Joseph did. My human nature cries out "No more--enough already!" God wants me to be able to say "Yes Lord. I trust you even though I don't understand what is happening."

"My thoughts are completely different from yours," says the Lord. "And my ways are far beyond anything you could imagine. For just as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts." (Is. 55:8-9)

We have had a good weekend. Friday night we went to Frontier City with the rest of OKC. (They passed out free tickets.) Anna stayed home with Aunt Shonda. Saturday we had Will's party. The most popular game was the one that involved smashing raw eggs on your head. As one of the three Ben's said, "Wow, this is some messy party!" We will be cleaning Silly String and spider webs up for the next few days.
Anna seems a little more tired so we may be facing a blood transfusion this week. We will know tomorrow. Thank you for praying that she wouldn't have a fever. Any weekend we can avoid the ER is a good weekend.
Well, I have been summoned to go push Anna on the swings.
Until next time...
Bring it on!
Marlo

Friday, September 29, 2006 3:35 PM CDT

Congratulations to Jacob, our "Terrific Kid". He received an award from his teacher at the school assembly today. Way to go!
My sister and nephew came down yesterday to help with Will's party tomorrow. Today I was able to be footloose and fancy free (after Anna finished her chemo.) Anna's counts have continued to drop. Her white blood cells are 1.0 and her hemoglobin is 8. Pray that we will not have any fevers or need a blood transfusion this weekend--both would require a hospital admission.
We will go to the clinic for labs on Monday.
Love, Marlo

Wednesday, September 27, 2006 2:43 PM CDT

Well, we did it. The nurse watched me while I got Anna hooked up to her chemo this morning. I am officially "trained". I'm no professional, but it was nice to be able to play polly pockets and watch Will do his stilts during the infusion-- instead of having to sit at the clinic. Tomorrow the nurse will come back and draw a CBC so that we don't have to make a trip downtown just for that. Anna's WBC count was low on Monday so she is staying home this week. If she is neutropenic tomorrow, then she will probably miss her big brothers party on Saturday. I'll tell her it's just for boys and we will find something fun for her to do someplace else.
No one has called with an AFP yet.
Love, Marlo

4pm update:
The AFP is 3735 (down from 5200). That is good news. We will continue on with this chemo until it stops working. We will have our CT on Nov. 1 to see if surgery is an option yet.

Tuesday, September 26, 2006 2:47 PM CDT

"If you are walking in darkness, without a ray of light, TRUST in the Lord and rely on your God." (Is 50:10)

Happy Birthday Will! Anna's big brother turned six today. We gave him a pair of stilts at breakfast and he had them mastered before lunch. He had his first soccer game on Saturday. He kept looking to make sure I was watching and then he would blow me kisses. Jacob had a soccer game too, but he didn't blow me even one kiss! (Ten year olds take the game much too serious.)
Anna and I are waiting for the home health nurse to get here. She just called and said it would be around 4pm. Doesn't she realize I have 3 kids getting home from school who have to do homework, practice piano, and be fed before six o'clock soccer practice? I'm hoping she will train me to do everything so that we can work around our family's schedule a little better in the future.
No AFP results yet. We should get them tomorrow.
Love, Marlo
PS.
Thanks Mom and Dad for coming down and taking Will birthday shopping and taking the rest of us out to lunch.

Monday, September 25, 2006 10:50 AM CDT

Back to the clinic today. Anna will be reaccessed and get vincristine and irenotecan. They will also draw an AFP to see if the chemo is working. If the AFP goes up, the surgeon wants us to have a CT scan next week. I was really hoping to avoid surgery until after our Make A Wish trip. Of course we will do what is best for Anna. She is just feeling so good right now and would enjoy the trip so much.
Yesterday Anna went to Sunday School. They had a worksheet with circles on it. The kids were supposed to draw their feelings (happy, sad, surprised, mad, etc.). Anna's faces were all happy. She even drew extra happy faces on the back. The other day we were reading a book about a boy who was having a bad day. I asked her, "Have you ever had a bad day?" She thought about it and said, "No". Praise God that she still has such a positive attitude after all she has been through. (Don't think that she is not difficult though. Right now she is naked because all of her clothes "bother" her. Getting dressed each day is a challenge!)
One other funny thing she said this weekend...I was trying to talk her into taking a bath since she hadn't had one all last week. She finally got in the tub after I agreed not to wash her hair---she's bald! She puts up a fight over the funniest things.
Love, Marlo
PS. Attention all you "cancer moms" of OKC. (I hate being called that. Does anyone have a better term?) We are meeting Thursday night at 7pm for fellowship and encouragement. Email me at the address below and I will give you the details.

Friday, September 22, 2006 2:20 PM CDT

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the GOD OF ALL COMFORT, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." (2 Cor 1:3-4)

I am praising the God of all comfort today for sending someone to comfort me when I needed it. As I was leaving the clinic this morning I asked for Anna's AFP results. It had tripled again. This new number (5200) is the baseline for the new chemo and does not reflect whether or not it has been effective. It does however show that the tumor is growing very quickly while off treatment.
Earlier, my friend Shelley had called to see if she could help out today. She came to stay with Will so that Richard could go to work. After the clinic visit, she stayed and played with Anna so that I could go to the store and then just sat and visited with me when I got back. She doesn't even know that God used her presence to calm me because I didn't tell her the news I had just heard. I'm sure that God somehow prompted her to call today. He has sent other people at just the right time during the past 19 months. He has comforted us by his Word over and over, but he also comforts us through his people--a clean floor, groceries, a check, an invitation, brownies, a mowed yard, a new book, an envelope of Bible verses left in the mailbox, a gift certificate, lasagne, a phone call, folded laundry---small things/big things done by people who want to help.

Thank you Lord for reminding me that you know every detail of this situation and you have NOT left me alone.
Amen

Thursday, September 21, 2006 3:36 PM CDT

We just finished day four. It went as well as it could, but it is still stressful trying to get the timing of everything just right. I end up giving Anna her oral chemo at the stoplights while driving Will to school. That just happens to be where I am at 12:15 when she needs to get those pills. Today at the clinic she was busy watching a movie, reading books, playing a game, and painting a treasure chest. It was a lot to squeeze into our visit. The nurses think she has done well enough to get her chemo through home health visits starting next Tuesday. They said they will miss seeing her every day though.
This chemo hasn't slowed her down at all. In fact she has so much energy, it's hard for her to go to sleep at night. While I'm thankful that we have been able to maintain her "quality of life", I hope the chemo is attacking the cancer.
We are still waiting to hear from Make A Wish about our trip. We are ready to go as soon as they can make the arrangements. Meanwhile, we are enjoying talking about the trip. The anticipation is a gift in itself.
Love, Marlo
PS. Thank you to our "church friends" for their generous gift. It was greatly appreciated.

Wednesday, September 20, 2006 10:30 AM CDT

"Though the Lord gave you adversity for food and affliction for drink, he will still be with you to teach you..." (Is 30:20)

We are getting ready for day three of round one of the TOCA clinical trial. It involves fasting for two hours before taking oral chemo, then driving to the clinic to be hooked up for an hour to IV chemo. Yesterday Anna did it in her new TinkerBell costume. As I was pushing her into the hospital she was wearing her costume (on top of her pj's), pink sunglasses, pink hat, and she was "poofing" people with her wand. Yesterday was easy for her because there were no "pokes". They are leaving her port accessed all week.
Monday was hard for me. I kept thinking "I hate this place." Starting a new chemo has been hard every time. It is never easy to put poison in your child's body. With each new one there is the unknown--what will this one do? Will she get sick? Is this going to make things better or worse? I thought signing the consent for her was hard and then I saw a teenager Monday who had to sign for himself. You know it is MUCH more difficult to make yourself do something hard than to have someone else make you do it. This young man knew all of the risks. He walked in feeling good and a few minutes later was being led to a couch by two people--feeling terrible. Now you know why I had my "I hate this place" day on Monday. Please know that I LOVE the people I have met at the hospital. I'm just SO glad that there won't be any hospitals in heaven.
Last night the kids had a great time at Incredible Pizza. Thank you to all of our friends who came. Thank you Carolynn for the tshirts, gocarts and everything else.
I think I am missing out on some bubble blowing. Gotta go.
Love, Marlo

Monday, September 18, 2006 4:42 PM CDT

9/19 Update--- Just to clarify things...Anna is not receiving anything from this fund raiser other than free pizza and an "incredible" time. The money raised will go to the Leukemia/Lymphoma society. The I.Pizza company chose to support cancer research after being touched by Anna's story. There is currently no way to channel funds to research for Anna's type of cancer. As a family we support research for ALL types of cancer. They are equally devastating.

"WARR ACRES, OK- September 15, 2006- On Tuesday, September 19th, Warr Acres’ Incredible Pizza Company will host a fundraiser night and silent auction to benefit The Leukemia and Lymphoma Society’s Light the Night® Walk. The event is open to the public, and will run from 4 p.m. until 9 p.m. with kids under twelve eating for half price during the event time. Ten percent of all sales from the evening will be given to the charity, along with 100f all proceeds from the silent auction.

The charity event, dubbed “Incredible Heroes Day”, is being held in honor of Anna and Jeromy, two local children battling cancer. Activities will include police car and fire engine tours, demonstrations by the local SWAT team and K-9 unit, face painting, as well as appearances by McGruff the Crime Dog, Batman, and Spiderman. Items up for bid in the silent auction include autographed merchandise donated by Bob Stoops and the University of Oklahoma, Shannon Miller, the Oklahoma Redhawks, the Oklahoma City Blazers and other autographed items."

We have been "adopted" by Incredible Pizza. Anna's cancer is too rare to have a "society" so they chose another cancer society to support. We are planning to be there tomorrow for at least part of the festivities.
Thank you Incredible Pizza!!!!!!
We finished day one of the chemo. I'll write more about that later....
Love, Marlo

Sunday, September 17, 2006 6:56 AM CDT

When the night is falling
and the day is done
I can hear you calling
Come...
And I will come
While you sing over me
When the night would hide my way
I will listen until I hear you say
How I love you
Child I love you
How l love you
Child I love you
How I love you

When the night surrounds me
All my dreams undone
I can hear you calling
Come
And I will come
While you sing over me
When the night would hide my way
I will listen until I hear you say
How I love you
Child I love you...

When this life is over
And the race is run
I will hear you calling
Come
And I will come
While you sing over me

(When the Night is Falling, Dennis Jernigan)

Try listening to this while watching the sun rise (or set).
New chemo starts tomorrow. Anna asks "Why?"
Because we are still trying to get all those weeds honey.
Love, Marlo

Saturday, September 16, 2006 7:59 PM CDT

Thoughts on the Holiday Inn....
"This was a great 'practice' vacation. Next year can we come back here for a 'real' vacation and stay longer?" (Audra)
"The worst part was getting here." (Jacob...the hotel was 20 minutes away)
"The best part was the games." (Will)

The kids had a great time at the hotel. This morning as I was trying to squeeze a few more minutes snuggled under the covers, I heard the pittar-patter of little feet in the hallway. I wondered what kind of parents would let their kids run around so early in the morning. A few minutes later Richard got up and went into the other room (we had a suite). He came back in and said, "Where are the boys?" I said, "Aren't they in bed?" Then I told him to check the hallway. Yes, they were my children running the halls.

Anna's thoughts on the "Incredibles on Ice"...
"Minnie waved at me!"
"I don't think he noticed me." ("he" was Balloo the bear)
"My favorite part was everything!"
"Can we come see it again?"

We had a great time watching Anna watch the show. She loved it all. She was waving at everyone and clapping and singing along. I can't wait to take her to see the "real" Goofy and Minnie.

Love, Marlo

Friday, September 15, 2006 11:00 AM CDT

"There is a time for everything...A time to cry and a time to laugh, A time to grieve and a time to dance..." (Ecc 3:1,4)

This weekend is a time for laughing and dancing--it's not time to cry! We are headed to the Holiday Inn for a little holiday. We've had to reschedule this three times because of health problems. It looks like we are good to go tonight! Thanks to our friend Mike for being flexible and finding us a room on one days notice.
We made a quick trip to the clinic to check Anna's tacro level this morning. We were in and out in 30 minutes--a new record! We will return everyday next week at 1pm and have to stay at least 2 hours. After next week we will be able to get the chemo at home with the help of a visiting nurse. Pray that this chemo will attack those nasty cancer cells who get a little smarter with each new drug.
Love, Marlo
PS. Our dishwasher works great now that the repairman came and plugged it in. (Yes, you read that right.)

Thursday, September 14, 2006 1:18 PM CDT

Anna had a great time at choir last night. Her only complaint was that it was too short. She can sing "Jesus Loves Me" with the best of them. Personally, I think she is ready for a solo.
We met Richard downtown for a picnic lunch at the Myriad gardens. We dined on Jason's Deli again (thank DDK). It was so perfect--sitting in the shade next to the water. Unfortunately I forgot the camera.
Now we are waiting for the dishwasher repairman. He came out last week, but when he got here, the dishwasher ran perfectly. I checked it just now and it's still broken. It better stay that way!
Love, Marlo

Wednesday, September 13, 2006 6:36 AM CDT

"But when I am afraid, I put my trust in you." (Ps 56:3)

Thank you for all of the encouraging words. I really am okay. I know at times I sound desperate in my postings, but I still have to go to the store and buy milk, fold laundry, and drive Audra to piano lessons. I'm not lying in a heap on the floor--thank God! Yesterday I was even blessed to be able to go with my friend to her ultrasound. Life goes on!!!
Anna is feeling good. We had a scare Monday night when she was awake most of the night. I finally figured out that it wasn't because of cancer, but because of the caffeine in the Coke she had at dinner. Most everyone is looking forward to the Disney Ice show on Saturday. Jacob wishes it was a monster truck rally--oh well!
Will has figured out that Anna should be in Pre-K at school. He also knows that she should be in Cubbies at church. He was trying to tell her that in a round about way by saying "Nate (her best friend) is in Cubbies." Anna didn't show any reaction so he kept saying it. Finally Anna said, "Well, I am in choir! Aren't I Mom?" I said, "You sure are!" So tonight we will be joining Ms. Teri's preK choir at church.
Love, Marlo
PS. Check out the new pic of Anna and Coach Stoops on the photo page. (Thanks Kay!)

Monday, September 11, 2006 9:49 PM CDT

"The Lord has said to me in the strongest terms: 'Do not think like everyone else does...Do not fear anything except the Lord Almighty. He alone is the Holy One. If you fear him, you need fear nothing else..." (Is8:11-)

"Oh Lord, it's so easy to be afraid and I don't want to live this way. Thank you for showing me this verse this morning before we faced the news of the day. Help me to not think like everyone else, but to keep my eyes focused on you. People think I am so strong and I'm not. You know that I have no strength and I am barely able to breathe sometimes. Our battle is not against cancer. Our battle is against despair, hopelessness, anger, depression, bitterness, and jealousy. Those are the things we must fight against every day. Satan would love to use this to destroy our family and bring dishonor to your name. I pray that the "peace that passes understanding would guard our hearts and our minds in Christ Jesus." (Phil 4:7) Lord protect Anna while she sleeps. May her dreams bring her peace instead of fear. Remind us that you are walking with us through the flames just as you did with Shadrach, Meshack and Abednego. Help me to enjoy today and not be overcome by my fears of the future. Amen."

Today we once again faced the decision to do nothing and let Anna enjoy a few months without medicine, shots, and hospitals, or to try a new chemo and see what happens. We chose to try the chemo so we will start next Monday. We are not placing any hope in this chemo for a cure. If Anna is healed it will be by God's hand.
Meanwhile, we can't sit around and cry all the time (though the tears do come). We ordered tickets several months ago to the "Disney On Ice" show this Saturday at the State Fair. We are glad that we ALL will get to go now. I also called Make A Wish and we are trying to schedule a trip to Disneyworld as soon as we can. Right now it looks like it will be the first week in November (we have to work around the chemo schedule and the week we needed in October was booked at Give Kids the World).
Pray that God would renew our strength and that we would not "fear anything except the Lord Almighty."
Love, Marlo

Sunday, September 10, 2006 9:43 PM CDT

I updated earlier today, but I wanted to give you the rest of the words to the song I quoted in the first sentence. I listened to this song yesterday as I was walking by the lake. I was reminded again of how BLESSED we are.

I bless you with joy and peace
And love that won’t let go
I bless you with grace and faith
And fire in your soul
I bless you with dreams and visions
Most men don’t know of
I BLESS YOU WITH DEEPER KNOWLEDGE
OF OUR FATHER'S LOVE

I bless you with the heart of a warrior,
Grace to stand and fight
I BLESS YOU WITH BROTHERS
WHO WILL STAND RIGHT BY YOUR SIDE
I bless you with courage
Till the battles have been won
I bless you with the faith to hear
your Father say, “Well done!”

I BLESS YOU WITH JOY AND LAUGHTER!
I bless you with a steadfast faith!
I bless you with the hopes and the dreams
That your heart goes after!
I bless you with amazing grace!

(I Bless You, Dennis Jernigan)

Counting my blessings,
Marlo

Sunday, September 10, 2006 3:23 PM CDT

God blessed us this weekend with joy and laughter even in the midst of difficult circumstances. We enjoyed time with friends on Friday and Saturday night. With us, it has to be "last minute" planning because we never know what a day will hold. Thanks friends!
We found out Friday that Anna's AFP went up this week. That means the new chemo is not working and we need to change courses mid-stream (as they say). Pray that we will make wise decisions.
We are headed to more surgery tomorrow--our dog that is. Asta has a stone in her bladder. Did we need that right now--NO WAY! Thank you to our friends K and D who have volunteered to host Asta as she recovers this week.
Love, Marlo

Friday, September 8, 2006 11:31 AM CDT

The clinic visit went smoothly, but Anna's counts are too low to do the next round of chemo on Monday. I think the drop in her counts had something to do with all of the antibiotics and the overdose of tacrolimus that they gave her this week in the hospital. Hopefully she will bounce back quickly this weekend. We will check again on Monday and start chemo on Tuesday if all is well. Meanwhile, Anna and Will are having a great time playing. He is SO sweet to her and does whatever she wants to do. Every now and then she will push him too far and he lets her "have it".
Thankful for a weekend at home,
Marlo

Thursday, September 7, 2006 6:16 PM CDT

"We're home!"
They finally let Anna eat this afternoon then told us we could go. We have to go back in the morning for a clinic apointment we already had scheduled. Hopefully they will let us start chemo on Monday as planned.
Thanks to everyone who visited us. The time went quickly for me. We will finally get to enjoy our canceled visit to Jason's deli thanks to the staff at DD KIrkland.
Love,
Marlo

Thursday, September 7, 2006 10:57 AM CDT

Today I woke up just in time to meet with a resident who basically told me that they aren't sure what to do. He said, "It's very strange." I told him that Anna is very strange. He told me that it could be life threatening. I told him that she has lots of things wrong with her that could be life threatening. He also told me it could be nothing. We had another Xray at 8am so they can compare them and see if there is any change. I'm hoping they will send us home this afternoon.
We are in the Aikman End Zone right now. Will is playing a computer game and Anna is playing Barbies with a volunteer who looks a little like Barbie herself. I am enjoying an unexpected "break" to check my websites. While you are checking on us, I am checking on about 15 other kids. I am so excited for our friends the Briscoes who were chosen for "Trick My Truck". I have no idea what all that means, but I think it means they will be on TV and that Brian's dad will have his truck "tricked". Yea! I want to rejoice with those who rejoice and mourn with those who mourn.
Another surprise this morning was a visit from Coach Stoops. I was still in my hospital pajamas, but he wasn't there to see me. Anna got an autographed pom-pon and Will got a football. I think the 8 year old boys next door were more impressed than Anna. She only knows him from his visits to the clinic. She doesn't know why he is on TV every week.
Blessed,
Marlo
"I thank God every time I remember you (our friends who continue to bless us)"

Wednesday, September 6, 2006 4:29 PM CDT

This has been an interesting "bump" in the road. Last week when we brought Anna to the ER because of her pain they sent us home. This week they call us when we are on our way to Jason's deli and tell us we have to bring Anna in right away. I think the problems they saw on the CT yesterday were probably worse last week and are getting better. Today I didn't ask God, "Why?", but I did say, "Couldn't you just give us ONE problem at a time?" Now we have the tumor, the pancreatitis, and the misplaced gas bubbles. Anna doesn't know she is sick and continues to ask if she can just "lick" since she can't eat.
Last night they wanted us to have an abdominal xray at 11pm. Anna rode her tricycle to and from the xray room. When we got back she wanted to watch a movie and when that was over she wanted to play a game. I told her I was too tired! She made up for it with a long nap this afternoon. (I wasn't so fortunate since I had to talk to the six different people who came in while she was asleep--nurses, surgeon, cleaning lady, etc.) We are thankful for the visitors we had today and for the Hubbards hosting the other kids after school. (God provided that in an interesting way!) We don't know how long we will be here because they really don't know what to do with us at this point. They say they are gathering information/opinions. If Anna could eat, this wouldn't be so bad. Part of the fun about being in the hospital is getting to eat whatever you want! We will just have to find alternate forms of entertainment:)
Love, Marlo

Tuesday, September 5, 2006 11:12 PM CDT

You may remember that earlier today I quoted Solomon -- saying that we couldn't fully understand the ways of a Sovereign God. Well, to further illustrate...

The CT scan today showed that the tumor mass in her lung grew from 2 mm to 5 mm, which may be a good thing believe it or not if it means that all the cancer is concentrated in that spot. Since her AFP came down, we assume that the chemo is getting some response from the tumor and before the chemo started, the tumor must've actually grown bigger than 5 mm and is now shrinking. But honestly, I don't have a clue whether it is good news or not. It is what it is.

The more serious issue, at least for today, is that the CT scan also showed that she may have pancreatitis and air in her intestinal wall, which could be very bad. So Anna was admitted to the hospital tonight for a few days of antibiotics, which will hopefully knock out the problem. The worse news, at least for Anna, is that she is not supposed to eat for the next few days in order to "rest her bowels." Unfortunately, Anna has had a ravenous appetite and is hungry all the time. It is going to be a tough few days. Plus, we are supposed to start chemo next Monday. So what looks like a short stay could turn into a week or more if things don't resolve quickly.

We're thankful that despite all this, Anna is still feeling pretty good. We took her new tricycle to the hospital tonight and she was riding it around the hallway and the playroom at the hospital.

Waiting for the day,
Richard

Tuesday, September 5, 2006 10:01 AM CDT

After a nice long weekend without too many crises, we are back to our "regular" life of clinic visits, CT scans and waiting for results. Anna has a follow-up CT scan this afternoon at 1:00 and we really don't know what we want anymore, other than to be rid of the cancer. Her last CT showed a small spot on her lung. Her AFP is dropping, which is good, but the current theory is that it is still too high to be fully attributed to the spot on her lungh. So we assume there are microcells of cancer circulating through her system which will eventually form into a tumor. To have long-term success, we have to get rid of every last living cancer cell. Historically, this kind of cancer isn't "cured" by chemotherapy alone. So on the one hand, we'd like to have a clean CT scan because we want to be rid of tumor, on the other, maybe it's better to have all the cancer cells gathered into a tumor where the docs can go in surgically and get rid of it. I hate to subject Anna to any more surgeries, though. So you see our dilemna. We're just praying that if anything is there, the CT would show it and the docs would know what to do about it.

Reading from King Solomon this morning, the 2nd wisest man who ever walked the face of the earth, he says, "As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things." Notice that Solomon didn't say it was "difficult" to understand or that it required years of study and diligence or a special "spiritual" experience or reading the right book or going to right seminar or reaching a certain age. He says we CANNOT understand the work of God. Right now we see through a dirty window, catching glimpes here and there of the things that are and things to come. But on this earth, we cannot know in full, only in part.

Waiting for the day we know in full,
Richard

Saturday, September 2, 2006 9:24 PM CDT

We survived the trip to the zoo today. We didn't see very many animals because we were too busy riding the rides, getting tatoos, and shopping at the sidewalk sale. Richard gave the kids the, "Next time we come to the zoo we are only looking at the animals!" speech on the way home. I'm sure they were duly convicted of their spendthrift ways. We did enjoy watching the alligators until Will scared Anna by yelling at them. She thought they would come get us. We also enjoyed the lorikeet exhibit. If you have never waked into a lorikeet enclosure with a cup of nectar in your hand you should try it. (Of course you can't mind a little lorikeet poop in your hair now and then.)
Last night Richard and I enjoyed a REAL date (dinner AND a movie) thanks to Miss Kristi who came over and stayed with the kids. All in all it was a good day and we didn't have to go to the hospital---yea!
Love,
Marlo

Friday, September 1, 2006 11:45 AM CDT

We got the AFP results. It went from 1900 to 1226. Remember normal is below 10 so there is still cancer, but at least this new drug is doing something. With chemo, the cancer cells become resistant so you have to keep trying new drugs. This means we will do another round of oxaliplatin later this month and do a CT on Tuesday to see if we can see anything. Thanks for praying and waiting with us. We will enjoy the zoo this weekend (Anna's choice).
Love, Marlo

Friday, September 1, 2006 11:02 AM CDT

No results yet. Last night Anna woke up screaming saying her head hurt. I panicked and thought the worst. While I was downstairs looking for Tylenol (I didn't know what else to do), Richard soothed her with one of his stories. She went back to sleep and is doing fine this morning. I am thankful for those of you out there who are still praying for a miracle--- while I prepare myself for the worst. Why do I do that? I think it is because I would rather be surprised than disappointed. Is it a lack of faith? I don't think so. I know God is able, but I also know that his ways are higher than my ways and that I don't/can't understand the way he works sometimes. I'm okay with that....most of the time.
Waiting,
Marlo

Thursday, August 31, 2006 9:39 AM CDT

"those who trust in the Lord will never lack any good thing." (Ps34:10)

I know everyone is checking in to find out "Did the chemo work?", "Has the cancer spread?", "What's next?" The answer is......I don't know. We don't have any test results yet. Yesterday Anna was in pain all day so I was sure that the cancer had spread all over her body. Today she has been outside swinging and riding in her Jeep. Right now she and Will are eating goldfish and watching "The Emporer's New Groove"---a normal day. So I will take what I have today and try not to worry about tomorrow. God knows exactly what the AFP is and he is in charge.
Waiting,
Marlo

Tuesday, August 29, 2006 8:50 PM CDT

I just thought we were going to stay home today! Anna's pain was more constant and she wasn't eating so I was afraid that there was some sort of blockage. I met Richard at the ER at 3:30pm and we waited 3 hours to get an X-ray taken. It turns out that she is just full of gas, but there is no obstruction as far as they can see. Thanks to everyone who helped with the other kids today. Will is getting to enjoy a sleepover with his buddy since Anna and I will be back up at the clinic bright and early tomorrow. I sometimes wonder what I would be doing with my time if I wasn't doing this....
Glad to be home,
Marlo

Monday, August 28, 2006 7:54 PM CDT

Just a quick note to let you know we don't know anything yet. They only run the AFP labs on MWF afternoons. We were too late for them to run it today so we will draw the labs on Wed. morning when we go for our weekly 2 hour cytogam infusion (something we do for 6 weeks post-transplant).
Thanks for the meals, the anonymous lawn mowing, the calls and visits. Thanks also to our friends at Richard's office for their generous gift. They have been SO good to us this year. We couldn't have asked for a better employment situation through all of this. We will never be able to thank you enough.
Anna continues to suffer from intermittent pain, but it is better since she started taking Creon with every meal. She is outside playing right now--after eating two bowls of Amy White's spaghetti.
Love, Marlo

Sunday, August 27, 2006 7:07 AM CDT

"All praise to the God and Father of our Lord Jesus Christ. He is the source of every mercy and the God who comforts us." (2Cor 1:3)

We are glad to be home. It was wonderful to get home so early on Friday and to not have to struggle through the airports with Anna. A BIG thank you to Jim Hensley of American Jet Charter for arranging our transportation from Wilmington to Dallas and then for him and his wife Ramona coming to pick us up in Dallas. They even had Welcome Home signs and balloons decorating the arrival area in OKC. The other kids got to come out on the runway and take a tour of the plane after we landed. Everyone had such a good time!
When we got home, Anna had a big surprise from Daddy's friends at McAfee and Taft. They bought her a motorized Dora Jeep. She hasn't quite mastered the driving part, but she is enjoying riding around with Audra at the wheel. Thank you for that welcome home gift!
Anna has been having a lot of pain since yesterday afternoon. It seems to be caused by excess gas in her intestine which is one of the possible side effects of the chemo. She was already having a little bit of trouble in that area as a result of the Whipple procedure, so she is having a hard time of it right now. We will go tomorrow for labs and we will see is this chemo had any effect.
Thank you to our friends who brought food yesterday. It was greatly appreciated. Thanks also to our neighbor who had the other kids over to swim. I was able to go to the store while Richard stayed with Anna.
Anna is crying so I need to go. She wants her shot first thing when she wakes up so that she doesn't have to worry about it all day.

Love, Marlo

Friday, August 25, 2006 8:45 AM CDT

We are home safe and sound--and all before breakfast! Will write more later. For now the girls are in the tub (Anna's choice of activites) and Jacob is making french toast. Thanks to all who made today possible!
Love, Marlo

Thursday, August 24, 2006 9:08 PM CDT

We have confirmed that Marlo, Anna and Grammy will be headed home in the morning -- very early in the morning actually. Due to a slight change in plans, the girls will be leaving Wilmington no later than 5:00 AM...seriously. They actually will have to leave the Ronald McDonald House for the airport about 4:15 AM, which is about 3:15 AM our time here in OKC. So if the Lord wakes you up in the middle of the night, or you just can't sleep for some other reason, you might lift up a word to our Father on their behalf for safe, uneventful travel and safe arrival here in OKC. They are due to arrive at Wiley Post at about 7:30 AM.

One More Day,
Richard

Thursday, August 24, 2006 9:10 AM CDT

Good News this morning -- Anna's fever came back down last night so we avoided a return visit to the hospital. So we're thankful to the Lord for that. Every night out of the hospital is a good night!

Morning labs all look pretty good and the girls are going to a place called Longwood Gardens in PA today. Still set to come home tomorrow.

Richard

Wednesday, August 23, 2006 8:17 PM CDT

Well, for those of you checking on Anna before bedtime, she is running a temperature tonight. It isn't so high as to cause a return to the hospital yet but we're right on the border. I sure would like Marlo and Anna to get a good night's rest tonight -- Anna just can't seem to stay out of the hospital for more than a few days. And of course, I don't want anything to jeopardize their return home on Friday. But we have to deal with whatever comes our way.

Thanks for praying. Marlo will check back in tomorrow.

Hoping for that miracle,
Richard

Wednesday, August 23, 2006 6:46 AM CDT

Help me.
God I'm scared.
And I'm unprepared to face the night alone.
Hear me.
Hear my prayer.
My soul it aches and I've nowhere to go.
Help me God.

Sometimes people leave
And I can grieve because life is not always fair.
Help me to hold on.
Tho I can't see you, I believe you're there.
I know you're there.

In this dark hour
I know only the power that made the stars
Can mend my heart.
Oh, I've tried on my own, but I'm not that strong
You're all I've got
You're all I've got
Help me God.

(Help Me God, Kathy Troccoli)

Last night was long and full of desperate thoughts. Then I got up and read from Job who only echoes the cries of my heart. (Nothing I'm going through is unique. Job is the oldest book in the Bible.)
"If he sends death to snatch someone away, who can stop him? Who dares to ask him, 'What are you doing?'...I (can) only plead for mercy." (9:12,15)
"He will not let me catch my breath, but fills me instead with bitter sorrows" (9:18)
"You formed (Anna) with your hands, you made (her), and yet you completely destroy (her)." (10:8)
If there is any comfort to be found in the book of Job, I know it comes at the end when God speaks to him and then the second half of his life is even better than the first. But that doesn't make his suffering in chapters 1-40 (or mine) any less painful. All I can say this morning is "Help me God."
Marlo

Tuesday, August 22, 2006 5:44 PM CDT

Today the news is bittersweet. Dr. Casas said we could go home Friday. I'm happy about going home, but I wanted to go home when Anna was cancer free. I didn't want to go home with a tumor growing somewhere in her body. They don't want to do another CT scan until right before her next round of chemo in three weeks. (To give the chemo time to work.) Her liver numbers are perfect so there is no reason for us to sit around here and wait. If they find something on the CT scan and it's operable, we will try to get it out. The future is SO unclear. It is hard to continue on this path. I feel like Job when he said, "I have been assigned months of futility, long and weary nights of misery." (Job 7:3) This is the path the Almighty GOD has chosen for us so I must continue on and learn to trust him again each day.
Anna seems to be handling this new chemo better than expected (after reading the three pages of possible side effects.) She is still eating, although her food goes right through her (a side effect of the Whipple procedure.) She rode her tricycle down to the cafeteria to pick out her dinner then rode in her stroller back up to her room. I have promised that when we get home we will get a little tricycle that she can peddle by herself. She has a little bike, but it is too hard for her to go by herself and I have to pull her. (Of course what she says she really wants is a motorized car!)
Something wonderful happened today that will make Friday a very special day. The company who flew us out here for the transplant has offered to fly us home in a private plane. The owner is donating his plane and others have provided the fuel and the pilots are donating their time. They will leave OKC Friday morning and come and get us at the Wilmington airport. Isn't that wonderful!!!!!!
The thing I tell all parents who are just starting this journey in the world of childhood cancer is that it is not ALL bad. There have been a LOT of good things that have happened in the last 18 months. We have met SO MANY great people. God has loved on us over and over again through the hands of his people. We can never thank you enough for caring for us in his name.
Prayer Requests:
Pray that the chemo will work.
Pray that Anna will not get sick and be unable to travel on Friday.
Pray that they will be able to find the tumor (I know that 40 years from now they will have the technology we need today.)
Pray that we will know how to live.
Love, Marlo

Tuesday, August 22, 2006 9:05 AM CDT

Anna is starting the chemo this morning. It should run for about 2 hours then she will be back on fluids for the rest of the day. She should go home tonight or tomorrow if all goes well. We are praying for protection from the side effects of this chemo -- as with all chemotherapy, it can be nasty -- numbness of extremities, sensitivity to cold, nausea, etc. Anna is feeling much better over the last few days and I just hate to knock her down again. It seems like everytime starts improving, we hit her with something else. And yet, she inevitably bounces back. We're thankful to the Lord for bringing her back each time.

Waiting for a miracle,
Richard

Monday, August 21, 2006 8:24 PM CDT

It has been a long day for Anna and Marlo. Anna was in good spirits most of the day. Her stitches did get taken out, but it was only after lots of tears and screaming. They are trying to start the chemo but she is not hydrated enough yet. Please pray that the get to the point that they can administer the chemo soon so Anna and Marlo can get some sleep.

Bad news about the AFP -- it tripled again this week. We're pretty discouraged at this point but haven't completely given up hope. Perhaps this new chemo will be just what she needs.

In need of a miracle,
Richard

Monday, August 21, 2006 7:23 AM CDT

Just a quick note before we head over to the hospital in a few minutes. I read over the possible side effects from this new chemo and was gripped by fear. This happens every time I have to sign those things. Pray for minimal side effects. It is so hard to do this, but my only other option is to do nothing.
We have had a great weekend. Anna is eating and sleeping much better than when we were in the hospital. We even went to the park yesterday and played.
Pray also for peace as she has her staples out today. She is very anxious about this and has been practicing her "coping" skills.
Love, Marlo

Saturday, August 19, 2006 8:50 AM CDT

What bliss! We went to bed last night at 9:30 and got up at 8am. No one came in and checked Anna's temp or blood pressure or oxygen sats and there were NO beeping IV pumps! Anna had her first bath since July 22nd. She left her shirt on because she didn't want to see her staples, but she's clean! I rented a car so that we could go to the park. Anna wants to go to the shoe store and get new shoes so we will probably do that too! Thanks for checking on us. Have a great weekend...
Love, Marlo

Friday, August 18, 2006 12:31 AM CDT

Yea! We are packing up and getting out of this room! We will go back to the McDonald House today and check back in the hospital for chemo on Monday morning. Anna had a great time in the gym this morning and even got to ride a tricycle all the way back to her room. Thanks to everyone who took care of us on 3CS. It's a great place to visit, but we wouldn't want to live there!
Love, Marlo

Thursday, August 17, 2006 12:21 AM CDT

...We get knocked down, but we get up again and keep going... (2Cor 4.8)

We were knocked down on Monday, but we are up and going again today. Anna is doing great recovering from her surgeries. She is walking everywhere and had a great PT session in the gym. (She didn't want to leave.) She is also eating again and her blood sugar levels have stayed down--even with her diet of Snickers and donuts. We kept her off sugar for 3 weeks because of her insulin issues so now she is making up for lost time. She is off the morphine and only occasionally will consent to taking Tylenol for her intermittant back pain. She is in a very good mood except she keeps asking when Grammy is going to get here.
Everyone made it safely back to OKC yesterday. I can't wait to hear about their first day of school. Of course I hate not being there to pick them up. I have to trust that God can work all of these things together for their good as well.
Loved,
Marlo

Wednesday, August 16, 2006 10:17 AM CDT

Although I usually quote the Bible, today's quote comes from Anna. When she woke up this morning she said,
"Where is Sittie?"
"She said she would be here bright and early first thing in the morning"
....."It kinda takes a while for Grandmas to come bright and early doesn't it?"

We made it through the CT yesterday. It took a long time and a lot of drugs to get Anna to fall asleep on her stomach. (They wanted her that way for this particular scan.) The scan showed one "suspicious" spot in her lower lung. It is very small so they aren't sure if the high rise in AFP could be attributed to such a small mass. We will start chemo here on Monday and see what happens. They will do surgery later if they need to.
Today we said goodbye to the family. That is always hard for everyone. It seems especially hard on Will. Please pray for him to be comforted. The kids will start school tomorrow so I hope they will be kept busy and get back into a routine. My mom will arrive here tomorrow so Anna and I won't be by ourselves for very long.
Thanks for all of the encouraging notes in the guestbook. If you haven't yet sent an ecard and you would like to, the address is www.Nemours.org/ecards. The patient is Anna Salamy and the room number is 3407.
Love, Marlo

Tuesday, August 15, 2006 10:03 AM CDT

I was sure by now, God You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You?
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away

I lift my eyes unto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth

(Praise You In the Storm, Mark Hall)

I know I have put this song on here before, but it's still raining. He is the God who gives and the one who takes away. Yesterday we received bad news. Anna's AFP had tripled from the week before. We were crushed. We thought the best we could hope for was getting Anna strong enough to go home to die. About 5pm our doctors came in to talk to us. They want to do a CT scan to see if there is localized tumor in her lung. If so, they can remove it. We are scheduled for a CT scan at 2pm today. We are hoping they will find something. (Most of you can't imagine "hoping" that the doctors will find a tumor.)
Richard wanted to stay for the CT scan so everyone is still here until tomorrow. The kids will miss the first day of school, but they don't seem to mind. I think they are just enjoying having everyone together. (Thanks to those of you who helped out with their plane tickets.)

For now, Anna is in good spirits, riding in a wagon, making bead necklaces, and playing Monopoly with her siblings.

Love,
Marlo

Monday, August 14, 2006 11:04 AM CDT

Praise Him!
We have seen a lot of improvement today. Anna has been out of bed all morning. She has been doing crafts (thanks Nan), walking, and even playing ball outside. This is all during her weekly cytogam infusion which requires us to take her BP and temp every 15 minutes. She had quite an entourage walking down the hall! Now she is happily reading books with Sittie and Richard is out getting a cheeseburger from McDonalds for her lunch.
We are waiting for the AFP results, but it is much easier to wait with the family still here. We are also waiting for our oncologist to confer with a doctor at St. Jude's. No one knows what the best treatment is at this point so we want to make the best decision we can. We are hoping to return to OKC for chemo as soon as Anna has recovered from her surgeries.
Anna let Richard stay at the hospital with her last night so I went back to the RM House and slept in a real bed without any interruptions for the first time in 3 weeks. It was wonderful!
Love,Marlo

Sunday, August 13, 2006 3:24 PM CDT

"We depend on the Lord alone to save us. Only he can help us, protecting us like a shield. In him our hearts rejoice, for we are trusting in his holy name. Let your unfailing love surround us, Lord, for our hope is in you alone." (Ps 33:20-22)

We got up this morning and got ready to go to church. We have been visited several times by the pastors at Brandywine Valley Baptist Church and were looking forward to visiting there. Anna woke up with a lot of pain in her side, back and shoulder (same spots as last week). She also gained a kilo and her temp was rising. We stayed with her and ended up having a CT scan to check things out. She started feeling better and the scan looked good. We're not sure what was going on, but she seems better now. Richard and the gang are supposed to leave tomorrow, but they don't want to leave if Anna is not stable. Pray for wisdom to know whether or not to stay longer.
Love, Marlo

Saturday, August 12, 2006 4:54 PM CDT

Today has been a better day. Anna has been able to eat "soft" food now that her tummy is awake. Eating has messed up her blood sugar so she had to have another insulin shot a few minutes ago. Pray that her pancreas will start making enough insulin.
Richard and I had a nice afternoon with the other kids. We took them to the Brandywine river and ended up with three soaking wet kids--what fun! (They were just supposed to wade in, but somehow they kept falling down:)
Thank you for praying for our WHOLE family.
Love, Marlo
HELP NEEDED: I hate to ask for help (ugly pride manifests itself again), but I need someone to watch Will in the mornings before he goes to afternoon kindergarten at 12:30. It would just be until I get home (hopefully in three weeks.) Please email me or give Richard a call if you can help or if you know someone who can. Thanks.

Friday, August 11, 2006 2:50 PM CDT

Anna and I just woke up from a nap. We both needed one! Richard and I were kept up last night by Anna's heart rate monitor going off every few minutes. Her heart rate was very low, but the doctors aren't worried. (Of course we worried all night until we spoke to the doctors this morning.) She is feeling more like herself today. She fought with me for 30 minutes before she walked halfway across the floor. Today has been spent trying to regulate her blood sugar (2 insulin shots so far), trying to get her to get out of bed and walk, and giving her her various IV meds. Her tummy is starting to "wake up" so she will be able to drink later today. (It's no cinnamon bagel, but it's a start.) Richard and I took a break and took the kids out for Mexican food for lunch. That always helps doesn't it. Anna stayed behind with Sittie and Pop. Sittie has turned into a good nurse--changing bedpans and everything! It's time for a nasal swab (some sort of screening for kids exposed to something in the ICU)so I better go help with that.
Thanks for the encouragement and the 2am prayers.
Love, Marlo

Thursday, August 10, 2006 9:44 AM CDT

"Have mercy on me, Lord, for I am in distress. My sight is blurred because of my tears. My body and soul are withering away. I am dying from grief; my years are shortened by sadness. Misery has drained my strength; I am wasting away from within...BUT I am trusting you, O Lord, saying, "You are my God!" My future is in your hands...Let your favor shine on your servant. In your unfailing love, save me." (Ps 31:9-10,14-16)

Thank you all of you who continue to pray for healing. I must confess that there are times (today being one of them) that I find it hard to hope for healing in this life. Instead I try to do what it says in Hebrews ch 11 and "place my hope in the resurrection to a BETTER LIFE." I am tired of fighting as I'm sure Anna is too. It gets harder and harder to watch her suffer. I can face the suffering if I know that it will result in something good, but I don't KNOW ANYTHING at this point. I don't know if I have another year, another week, or another day with her. I am tired of saying goodbye. Thank you for holding the ropes when I am too weak to pray.
This morning Anna's hemoglobin was low and she will need a transfusion. That's not a big thing, but of course I wonder if it's indicative of something else wrong. We may need to do another CT scan if they think there is fluid on her belly.
The one bright spot in Anna's day has been having her Sittie here with her. We are so thankful that Sittie and Pop were able to come at the last minute. Richard was going to take everyone to Winterthur this morning for a special excursion. The kids don't seem to mind hanging out in the hospital, but we wanted them to be able to write about something else in their "How I spent my summer vacation" essay.
Love, Marlo
PS. The doctor just came by and he thinks everything is probably okay.

Wednesday, August 9, 2006 5:37 PM CDT

"We have become a spectacle to the entire world--to people and angels alike. (1 Cor.4:9) Therefore, since we are surrounded by such a great crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily hinders our progress. And let us run with ENDURANCE the race that GOD HAS SET BEFORE US. We do this by keeping our eyes on Jesus, on whom our faith depends from start to finish...SO TAKE A NEW GRIP WITH YOUR TIRED HANDS AND STAND FIRM ON YOUR SHAKY LEGS. Mark out a straight path for your feet. Then those who follow you, though they are weak and lame, will not stumble and fall but will become strong." (Heb.12:1,2,12)

Our life is a "spectacle". It is not by choice, but somehow God is able to use what we are going through to help others. I wish there was another way. Someone told me today how strong I was. NO I'M NOT! I'm only putting one foot in front of the other. I am so weak that I didn't call anyone Monday night to come sit with me--and I could have. It is easier for me to write in this journal or even talk to a large group of people than to think of what I would say to one person if they came to sit with me. If you ever meet me in person you will be disappointed if you expect an eloquent conversationalist. I'm so thankful that God has been able to use me even with my weaknesses.
Anna has improved some today. She was moved to her old room this afternoon. Right now there is some problem with her port so we are trying to fix it so that we can continue her TPN (nutrition). She wants a cinnamon crunch bagel from Panera.
I took the other kids to a museum this afternoon while Richard sat with Anna. They went to dinner with Sittie and Pop tonight so that's why I have a minute to update.
Our room is covered with ecards. Thank you!
Love, Marlo

Tuesday, August 8, 2006 9:03 PM CDT

I wrote some wonderful words of encouragement from my quiet time this morning, but my journal is downstairs in the ICU. Just know that God is faithful and unchanging no matter what happens down here.
We are fortunate that they let us keep our room upstairs so I am taking the first sleep shift. I can tell it is really hurting Richard to see Anna like this and he wanted to stay with her. I also know he must be exhausted from getting everyone to the airport at 5am this morning. They all arrived on time (thanks Pamela). Anna had smiles for her daddy and Sittie, but she didn't feel up to talking to her siblings. I can see some small improvement, but we have taken a big step backwards and will have to give her time to heal. Hopefully she will move back upstairs tomorrow.
Love, Marlo

Tuesday, August 8, 2006 9:22 AM CDT

Yesterday seemed like a pretty big "storm". I thought Anna might not make it through the night and I was all alone. While I was feeling sorry for myself, wondering how I was going to get through, God reminded me that I was not alone. "I know the Lord is always with me. I will not be shaken for he is right beside me." (Psalm 16:8) I have that verse taped to the wall of Anna's room and what a comfort it was to me last night! God definately carried me through and today the reinforcements will be arriving. Richard's parents were called in at the last minute to come and help with the kids since Anna will still be in the hospital. It won't be the week that we had planned, but hopefully it will encourage Anna to have so many visitors. We will spend the day in ICU. Our nurse Deanna named her daughter Anna after our Anna. She was working in the ICU last summer when we were here and she liked Anna's name. Her Anna is now 11 months old.
Dr. Dunn told me that when the acid from the stomach leaks out it is like getting burned on your insides. Anna will be in a lot of pain. She is being very careful not to move at all. We are giving her lots of morphine and helping her change positions. Pray for healing!
Love, Marlo

Monday, August 7, 2006 8:43 PM CDT

Anna made it through the surgery and will be in the ICU at least overnight. She had an ulcer in her stomach that had leaked fluid all throughout her abdomen. She will be back on antibiotics and iv feeding to give her stomach a rest. The Whipple structure was still intact, which was good news, and they actually found a hernia in her intestine that they would've had to fix later so they were able to accomplish a couple things that needed to get done in one surgery.

So while it is good that everything is still intact structurally, it is definitely a setback for her recovery. She will be in the hospital the rest of this week at least, will be in a lot of pain, and in general have a tough go of it. This also sets our chemotherapy back, which may or may not be moot if her AFP continues to rise.

So our issues are:
1. Speedy recovery and healing from the ulcer;
2. Get rid of the cancer.

I'm still headed out tomorrow early with the kids so probably will not update further tonight unless something changes.

Richard

Monday, August 7, 2006 5:08 PM CDT

The doctors believe that there is some leakage causing air and fluid pockets in Anna's abdomen. This is one of the complications from the procedure that we had thus far avoided. She is very, very sick. They are going to do exploratory surgery tonight to see if they can find the source of the leak and repair it. She will then be back in the ICU for at least a couple of days.

Marlo is there alone so please pray that she will sense the presence of Christ in a powerful way tonight. I am still going tomorrow with the kids and my folks are going to come also to help out in case Marlo and I need to be with Anna or meet with the doctors.

Also, her AFP (her cancer number) went up this week, instead of down. We are all getting tired of the fight and are hoping for yet another miracle from the LORD. I don't know how many times we can ask for one but here we are again.

Richard

Monday, August 7, 2006 1:17 PM CDT

Anna is getting sicker by the hour. Her temperature (which has been unusually low for the past couple of weeks) spiked to 101.5 in a short time and she is now very lethargic. They are suspecting a possible infection of her portacath. They are still doing a CT scan but will also add some antibiotics in case it is an infection.

Richard

Monday, August 7, 2006 9:59 AM CDT

Please read Marlo's prior entry about Anna's severe pain this morning. She will have a CT scan later today to see whether there is any fluid build up from a possible "leak" in one of her internal sutures. If so, they will need to drain the fluid to relieve her pain.

Richard

Monday, August 7, 2006 9:27 AM CDT

Thank you to everyone who sent ecards. We've gotten 50 so far!
Please pray for Anna's pain today. She is having bad side/back pain. They tested her for pancreatitis and the test came back okay. They aren't sure where the pain is coming from or how to manage it. I feel so helpless.
She is also very anxious because her staples are supposed to come out today. I'm hoping they will give her something to relax her before that procedure.
We thought we might discharged today, but I am doubtful at this point.

Sunday, August 6, 2006 7:26 AM CDT

Anna has had an okay weekend -- no major emergencies. It has been quiet at the hospital. Quiet and boring is good when you're in the hospital! The plan is still for Marlo and Anna to be discharged over to the Ronald McDonald House tomorrow. The kids and I are still planning to fly out on Tuesday.

Anna is still having trouble regulating her blood sugar, which we think is causing her not to resume her normal appetite and thirst. So far we've managed to avoid insulin shots but we need for this to get under control so we can get her back on a good solid diet and get proper nourishment.

We have not yet decided on a chemo plan and will be contacting other cancer centers early this week (like St. Jude in Memphis) for some guidance. We want to make sure that Anna gets the best treatment possible so that we can make the most of this second chance that the LORD has given her.

Finally, as a very small point (but one worth mentioning since I'm writing today), I've never flown with all three kids before and we are flying on special discounted tickets. It is a good deal but we will be flying standby, at least on the trip out. So please pray that we can all get on a good flight and can all sit together. We'll be returning next Monday.

Quick "devotional thought" --- The other day, when the nurse came to take Anna's temperature, Anna told her she wanted "the shooting kind with the pizza." Of course, the nurse had NO idea what she was talking about (probably the morphine talking....). Actually, Anna was perfectly describing a particular thermometer that has a disposable tip (which is discharged when you're finished -- it "shoots" off) and indicates the time remaining until the temperature is complete by showing what looks like a pie chart with pieces being added as time goes by -- when the "pizza" is complete, the temperature is done. Sometimes words just can't communicate the object we're describing. I think it's like that with God. We try to come up with all kinds of ways to describe the truly indescribable. Words like "awesome, amazing, majestic, supreme" can also be used to describe the latest XBox game, movie special effects, a moutain, and a pizza. No matter how hard we try -- we cannot fully capture all that God is with our mere human words and thoughts. You might remember that next time you have your temperature taken -- ask your nurse for the "shooting kind with the pizza."

Grace,
Richard

Friday, August 4, 2006 10:05 AM CDT

"Cursed are those who put their trust in mere humans and turn their hearts away from the Lord...But blessed are those who trust in the Lord and have made the Lord their hope and confidence." (Jerimiah 17:5,7)

I met with the oncologist yesterday and was once again reminded of our "impossible" odds. Later I read the verse above and remembered that I have to put my hope in the Lord and not in chemotherapy. There is NO way we (or they) can know the future. Psalm 139 says that God has numbered our days "and in Thy book they were written, The days that were ordained for me, When as yet there was not one of them." I was reading a book on prayer and the author said, "When our days are complete, no one will be able to keep us in this life. Until then, one might say that we are immortal. The day is written....We should not live in fear of losing our lives. He wants us to be fully alive in this life until we finish our course and step into the next...We should live each day fully as a part of the journey He has given us." ("The Heart of Prayer", Lana Bateman)
THANKS to everyone who has sent cards. We have them taped to the window. If anyone would like to send a free eCard you can go to www.Nemours.org/ecards It is a service provided by the hospital. They will print it out the card and a volunteer will deliver it to the room. You might need her full name (Anna Salamy) or her room number 3407.
Richard made it home safe and the kids were glad to see him. We can't wait to see everyone next week!
Have a good weekend...
Love, Marlo

Thursday, August 3, 2006 8:31 AM CDT

"The Lord is good and does what is right..." (Ps 25:8)

Another day. Anna had a good day yesterday. She enjoyed her sessions with the OT and the PT. She got out of bed and sat in a chair and played ball. She even walked a few steps on her own. This morning she is grumpy and doesn't want to do anything--not sure if it's pain, being tired, or just a bad attitude.
Richard will be leaving in less than an hour. It is always hard when people leave. That may be why Anna is grumpy. He will bring the kids back next week. Hopefully we will be discharged back to the RM House by then.

Things we are thankful for:
*our nurse today is Star who we got to know last year
*low blood sugar levels
*a craft basket from nurse Nan
*child-life volunteers who have visited Anna and read to her
*a visit from a local pastor
*doctors who haven't "given up"

Prayer requests:
*that Anna would start eating/drinking
*for increased output
*for NO cancer cells
*for the right chemo drugs
*safe travel for Richard

THANK YOU!!!!!!
Love,Marlo

Wednesday, August 2, 2006 11:51 AM CDT

Anna is still slowly improving each day -- still a long ways to go, but bit by bit.. Her liver numbers are all good and her AFP this week was about 225 -- this was a huge drop from the prior number. This is good news but the doctors are attributing it mostly to the removal of large sections of tumor. I prefer to consider it an answer to prayer. Only time will tell which is right -- probably a little of both.

The tumor board met yesterday afternoon. No decisions were made about chemo but the consensus was that Anna's outlook is worse than they originally thought (which wasn't very good to begin with). It is hard to hear that because she today most of the signs are generally positive and she seems to be improving.

The earliest she would start chemo would be the week of August 14th. So the docs still need wisdom about the post-transplant chemo plan.

Today's top issues are:
1. Get rid of all the cancer (you might as well keep this one at the top of the list until further notice).
2. Good chemo plan -- deadly on any remaining cancer cells, harmless to healthy tissue.
3. Anna's blood glucose levels are running high and she is getting insulin to help control it. Some of this is from the removal of 1/3 of her pancreas and some could be from the immunosuppressant she's taking. If it doesn't get under control quickly, she will have to take insulin shots like a diabetic until it gets under control. I just hate for her to have to get any extra pokes than absolutely necessary. Please pray that her blood sugar regulates itself normally.
4. I'm traveling back to OKC tomorrow and then trying to bring the kids out next week. As you know, airline tickets are just a hassle to deal with. People have generously donated frequent flier miles and vouchers but sometimes it is hard to put those together when traveling with 4 people. Please pray that the Lord will work out the smallest details so that our family can be together for a short time before school starts.

We are living day to day -- so long as Anna still feels okay and is improving, then we're going to keep fighting. She has already done better than the docs expected but to have long term success still requires the LORD's hand to intevene. Pray that we will keep looking to Jesus rather than our circumstances.

Grace Enough,
Richard

Tuesday, August 1, 2006 7:45 AM CDT

We have moved upstairs and are now living the "suite life"---really! Our new room is actually two rooms connected by a sliding glass door. It feels so luxurious after living in the ICU for a week. Richard and I were both able to stay in the room last night instead of switching places at 2am. Anna is still doing okay. She is complaining of pain more now, but that is because she is not drugged up with morphine around the clock. We are trying to get her to eat and to move around more.
Funny story: Back in June, when Anna's hair started falling out she had a bald spot on the back of her head. She didn't know about it until her brother told her. I told Will that he shouldn't have told Anna about that since she hadn't noticed it yet. A few days later she was looking at Richard and said, "Daddy why do you have a bald spot?" I told her we didn't need to tell Daddy about that either!
Love, Marlo

Monday, July 31, 2006 1:17 PM CDT

We are now a little more than one full week post-transplant. As I sat by Anna's bed this morning I agreed with the psalmist who cried out to God, "We went through fire and water, but You brought us to a place of abundance...Come and listen, let me tell you what He has done for me...Praise be to God, who has not rejected my prayer..." (Psalm 66:12,16,20).

It has been a long week but we have avoided so many complications thus far. I will never forget last Sunday night (and early Monday a.m.) when they told us that Anna had about a 50/50 chance of not surviving just from complications from the surgery, without even considering the cancer. Marlo and I are so thankful for all the prayers offered up for Anna even in the middle of the night.

We are being moved to the regular post-surgery floor today and Anna's appetite is returning. If things continue to go well, she will probably be in the hospital through the end of this week before being discharged to the Ronald McDonald House. Then its back in for chemotherapy.

Here are the key issues we are now facing -- they are all critically important. The Lord Jesus has won many victories for us this week but we still have to ensure that every last cancer cell has been totally eliminated. Again, the odds are strongly against us here. I don't want to give you the percentage they quoted us but the truth is that avoiding a recurrence will really be miraculous in and of itself.

1. Protection from CMV (a virus that was in her transplanted liver). She is taking strong antibiotics for this.

2. Wisdom for the cancer team (in conjunction with the transplant team) to decide about the right course of chemotherapy. This may be the #1 issue right now because if we cannot make sure we're rid of the cancer, then everything else is meaningless. They are meeting tomorrow.

3. Continued healing of all Anna's many incisions, both internal and external. Any of them could leak, become infected, etc.

4. Restoration of Anna's spirits -- she needs to start wanting to get up out of bed, go for walks, eat better, etc. This has historically been quite a battle but we're cautiously optimistic that this time will go better.

5. Timing of my (Richard) return to OKC and potential visits by our other kids and our folks.

Recipient of Much Grace,
Richard

Monday, July 31, 2006 12:57 AM CDT

We are now a little more than one full week post-transplant. As I sat by Anna's bed this morning I agreed with the psalmist who cried out to God, "We went through fire and water, but You brought us to a place of abundance...Come and listen, let me tell you what He has done for me...Praise be to God, who has not rejected my prayer..." (Psalm 66:12,16,20).

It has been a long week but we have avoided so many complications thus far. I will never forget last Sunday night (and early Monday a.m.) when they told us that Anna had about a 50/50 chance of not surviving just from complications from the surgery, without even considering the cancer. Marlo and I are so thankful for all the prayers offered up for Anna even in the middle of the night.

We are being moved to the regular post-surgery floor today and Anna's appetite is returning. If things continue to go well, she will probably be in the hospital through the end of this week before being discharged to the Ronald McDonald House. Then its back in for chemotherapy.

Here are the key issues we are now facing -- they are all critically important. The Lord Jesus has won many victories for us this week but we still have to ensure that every last cancer cell has been totally eliminated. Again, the odds are strongly against us here. I don't want to give you the percentage they quoted us but the truth is that avoiding a recurrence will really be miraculous in and of itself.

1. Protection from CMV (a virus that was in her transplanted liver). She is taking strong antibiotics for this.

2. Wisdom for the cancer team (in conjunction with the transplant team) to decide about the right course of chemotherapy. This nay be the #1 issue right now because if we cannot make sure we're rid of the cancer, then everything else is meaningless. They are meeting tomorrow.

3. Continued healing of all Anna's many incisions, both internal and external. Any of them could leak, become infected, etc.

4. Restoration of Anna's spirits -- she needs to start wanting to get up out of bed, go for walks, eat better, etc. This has historically been quite a battle but we're cautiously optimistic that this time will go better.

5. Timing of my (Richard) and a potential visits by our other kids and our folks.

Recipient of Much Grace,
Richard

Sunday, July 30, 2006 8:18 AM CDT

"Oh, what a wonderful God we have! How great are his riches and wisdom and knowledge! How impossible it is for us to understand his decisions and his methods!
(Ro. 11:33)

I certainly will NEVER understand God's ways!
We had a quiet night. Anna's BP is a little high, but she is in good shape otherwise. She went 12 hours without morphine yesterday. She is very quiet and withdrawn. I think she gets depressed from being in bed and watching TV all day. This has happened before and is usually helped by a visit by her brothers and sister. Hopefully we will change rooms tomorrow and that will help raise her spirits.
Thank you, thank you, thank you for all of your prayers and support.
Love, Marlo

Saturday, July 29, 2006 7:29 PM CDT

Anna had her port reaccessed and it is working fine. They are managing to put everything in it as long as they stagger the meds that aren't compatible. So we have avoided another IV line for now. She has eaten a popsicle today and has been okayed to eat "clears". Our night nurse, Dana, brought some movies for Anna to watch tonight. She and Richard are upstairs watching "My Little Pony". I just came down for some dinner. We are still in ICU, but making progress. (WBC 5.5, AST 20)
Thanks for checking on us!
Marlo

Saturday, July 29, 2006 8:35 AM CDT

I wrote these verses from Romans 8 in my journal Sunday morning before we got "the call"...
"But if we are to share his glory, we must also share his suffering...Yet what we suffer now is nothing compared to the glory he will give us later...And even we Christians, although we have the Holy Spirit within us as a foretaste of future glory, also groan to be released from pain and suffering...we must wait patiently and confidently."
(vv.17,18,23,25)

Christians are not immune to suffering. This past year of suffering has only made me long for a better place where there is no suffering, no needles, no hospitals, etc. CS Lewis said, "Life is a battleground, not a playground." Too often we expect it to be the latter.
Today we have hit a few bumps in the road. Anna's port is flushing but won't draw. (All of my fellow moms of cancer kids will know what that means.) They are trying to decide what to do. (I've told them what to do, but evidently they need to consult someone higher up than me.) They had to take out the IV in her foot because of some problems so now they have to either put in another IV or figure out how to get everything in her port--which isn't working quite right at the moment. Either way, we are in for some more "pokes" this morning. Anna's bowels are moving so hopefully we will get off the TPN soon and that will solve some of the problem.
Love, Marlo

Friday, July 28, 2006 7:29 PM CDT

Anna had another good day.
*They took out her central line, but had to put a peripheral IV in her foot so they would have two access lines.
*Her BP has come down a bit so she hasn't needed anymore meds for that.
*Today when I was changing her, she told me "No more diapers!" So now she is using a bedpan.
*She smiled for the first time since Sunday.
Pray for continued healing inside and out. We are truly being carried in our Father's arms.
Grateful,
Marlo

Friday, July 28, 2006 9:21 AM CDT

I grew up in sunday school
I memorized the Golden rule
And how Jesus came to set the sinner free
I know the story inside out
I can tell you all about
The path that led Him up to Calvary
But ask me why He loves me
And I don't know what to say
But I'll never be the same
Because he changed my life when He became...
Everything to me
He's more than a story
more than words on a page of history
He's the air that I breathe
The water I thirst for
And the ground beneath my feet
He's everything, everything to me
We're living in uncertain times
And more and more I find that I'm aware
Of just how fragile life can be
I want to tell the world I found
A love that turned my life around
They need to know that they can taste and see
Now everyday I'm praying
Just to give my heart away
I want live for Jesus
So that someone else might see that he is...
Everything
He's more than a story
more than words on a page of history
He's the air that I breathe
The water I thirst for
And the ground beneath my feet
He's everything
And looking back over my life at the end
I'll go to meet you saying you've been...
Everything to me

(Everything To Me, Avalon)

I am amazed each day that we are still here and doing so well. This morning Anna had another drain removed and will have her central line removed later today (leaving just her port accessed). She is no longer using oxygen so we were able to get rid of the nasal canula as well. She still has one drain and it is very painful. It must be touching her diaphragm because whenever they mess with it she screams. The pain is referred to her shoulder. (I remember this happening after one of my C-sections and it is painful and doesn't go away with drugs.) Her blood pressure went way up this morning so she is getting medicine for that. She is talking more and asking to eat--good signs.
Nurse Nan brought new PJ's for Anna since I forgot to pack any. Nurse Kelly brought me books to read. We are so thankful for our friends here! We are also thankful for you who are reading this and praying for us. There is no explanation for how well Anna is doing other than God answering our prayers. I know that sometimes He doesn't answer them in the way that we would like, but SOMETIMES HE DOES! Thank you Lord! Our prayer has been that HE would be glorified in Anna's life or death. Today he has chosed LIFE! Thank you for another day.
Love,
Marlo

Thursday, July 27, 2006 7:43 PM CDT

Anna has had a good day. The only thing "off" was her temperature. It has been lower than normal since last night. She spent the day under a hot air blanket. The doctor said that sometimes transplant patients have difficulty regulating their temp after surgery. Her WBC have gone up to 1.3 and all of her liver numbers are coming down. So far this recovery has been even better than last year. Amazing!!!!
Continue to pray for her pancreas to heal so that she can start eating and drinking. Her bowels are a little slow in "waking up". She has not been asking for food like she did last year--not sure why.
She spends much of the day napping. When she is awake, she is very quiet. We get a glimpse of the "old" Anna when it comes time for her shot. She still fights with all the strength she has.
Still standing,
Marlo

Thursday, July 27, 2006 8:48 AM CDT

Wonderful mericiful Savior
Precious redeemer and friend
Who would have thought that a lamb could
Rescue the souls of men

Counselor, comforter, keeper
Spirit we long to embrace
You offer hope when our hearts have
Hopelessly lost the way

You are the One that we praise
You are the One we adore
You give the healing and grace our
Hearts always hunger for

Almighty infinite father
Faithfully loving Your own
Here in our weakness You find us
Falling before Your throne

(Wonderful Merciful Savior, Selah)

You can stop praying for Anna's temp to go down. Last night I was piling on the blankets trying to get it to go up! If there was an infection brewing, the new antibiotics must be working. Her WBC count is still at 0.8, but everything else looks good this morning. Her liver numbers are all trending down. I will choose to see the low white cell count as a blessing--maybe it is keeping her body from rejecting the new liver, maybe it helped the doctors make the decision to switch to the antibiotics she needed, maybe it will keep people extra vigilant in their handwashing precautions.
"But Jesus spoke to them at once, 'It's all right.' he said, 'I am here! Don't be afraid.'" (Matt 14:27)
Waiting,
Marlo

Wednesday, July 26, 2006 7:05 PM CDT

Anna's WBC count is still zero but it has moved from 0.6 to 0.8---Go Cells Start Fighting! Everything else looks good. Anna is more alert and is getting morphine every 3 hours instead of 2.
We have read lots of books today. They have a great playroom upstairs where I can get books and movies. Anna is looking forward to being able to go there when she feels better.
Pray for an uneventful night of rest and healing.
Hopeful,
Marlo

Wednesday, July 26, 2006 1:27 PM CDT

Anna is still stable. The doctors are concerned about her low WBC count. It puts her at at very high risk of infection. They are switching her to stronger/broader antibiotics and anti-fungals to protect her. Please continue to pray for her body to start making white blood cells. I am tired and hungry so it is easy to become afraid. God still says, "Don't be afraid, trust me." Yes, Lord I will trust you and thank you for how well she is doing so far.
Taking a break,
Marlo

Wednesday, July 26, 2006 7:57 AM CDT

Anna continues to do well. This morning the doctor said that the only thing that wasn't perfect about her recovery so far is the low fever. They haven't identified a source and it doesn't seem to be getting worse, so hopefully it's just a response to the surgery.
Karen mentioned our expectations in her guestbook entry. We didn't EXPECT a liver on Sunday. We didn't EXPECT
to be faced with the decision to treat or not to treat in the middle of the transplant. We hardly ever get what we expect, so why do we have so many expectations? You do learn not to have them when each day has so many unknowns. I have NO idea what to expect tomorrow, so I will be thankful today that Anna is doing well.
Other things I am thankful for....
A private bathroom in our ICU room (very rare)
The same nurses three days in a row (Abbey and Matt)
Five hours of sleep last night
Sponge Bob coming on several times a day (Anna's favorite)
Good numbers
Your prayers and notes
People loving on my other kids while I can't
Big windows
A quiet room
Oatmeal for breakfast
God's word to encourage and strengthen us to face the day
Waiting,
Marlo

Tuesday, July 25, 2006 6:27 PM CDT

Today has been a nice quiet day. Anna is still neutropenic so the nurses are wearing gowns and gloves when they work with her. Pray that her WBC count will start to go back up. She is still getting her GCSF shots, but the anti-rection meds are hindering their effectiveness. She had her catheter and her arterial line removed today to reduce the possible sources of infection. Her temp has stayed under 100 today which is good. She is on morphine for pain as needed--usually every 2 hours.
God is continuing to care for us through people here. Richard had a visit from a pastor who is a friend of a friend's mother. I visited with the chaplain who is from Azerbajan. Nurse Nan (the one with the ducks) took me to the drugstore when she got off work so that I could get some things I needed.
My sister arrived in OKC today to take care of the other kids. Please call her if you would like to help out with the kids during the next 6 weeks.
Thank you for praying. Anna is doing better than they expected.
Satisfied,
Marlo

Tuesday, July 25, 2006 5:54 AM CDT

We made it through the night. It was pretty calm. Richard and I took turns sleeping. Anna needs quite a bit of help to get comfortable when she wakes up. She has a low fever, but that is to be expected after invasive surgery. I am happy to report that there is no crisis to write about at this time. We know that situations can change in a moment, but right now things are okay.
Tired,
Marlo

Monday, July 24, 2006 5:28 PM CDT

I will follow You through green pastures
And sing hallelujah to Your Name
I will follow You through dark disaster
And sing hallelujah through the pain

And even in the shadow of death
I will praise You
And even in the valley I will say
Holy, my God
You are worthy of all my praise

You are seated on Your throne in heaven
And You see all of us down here
And You have promised You will not abandon
So I shall not fear

You made every star
And You taught it how to shine
You knew my name before there was time
And all this was just part of Your glorious design
Hallelujah, Hallelujah

(All My Praise, Audrey Hatcher)

Thank you so much for interceding for us today. Anna is doing very well. They took her off the breathing machine a few minutes ago. The first thing she said was, "Mom, I'm thirsty." She is still hooked up to a myriad of tubes and machines, but each time one comes off it is a good thing. Her labs look good and so far there is no sign of infection. The doctors are pleased with her progress.
We are so thankful for our transplant team. We were denied treatment by two other facilities for just a regular transplant. I don't know that anyone else would have taken a chance and performed the surgery they did last night in addition to the transplant. They were able to get all of the visible tumor, but had to be very creative in how they hooked things back together because the tumor was located at the conjunction of two important veins. They removed half of her pancreas and her duodonem (sp?)and reattatched things in a way that we hope will work. So far everything looks good.
These surgeons aren't just good, they are nice too. Dr. Dunn gave us his car keys so that we could go out to eat during the surgery if we wanted to. I'd like to find anyone whose doctor has done that!
Continue to pray that there won't be any infection and that everything works the way it is supposed to.
Grateful,
Marlo

Monday, July 24, 2006 8:58 AM CDT

Please read Marlo's prior posts if you haven't already.

Anna is out of surgery and back in the ICU. The surgeon said that things went about as well as could be expected. She was stable during the surgery and is doing okay right now. She'll be sedated a good part of today. As with all surgeries, we're only halfway out of the woods. The main risks right now are infection (her counts are still low from the chemo) and serious complications from the nature of the surgery itself (not the transplant part but the other pancreatic/intestine part).

Thanks for all your prayers.

Richard

Monday, July 24, 2006 7:34 AM CDT

"And the Holy Spirit helps us in our distress. For we don't even know what we should pray. But the Holy Spirit prays for us with groanings that cannot be expressed in words...And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them...Can anything ever separate us from Christ's love? Does it mean he no longer loves us if we have trouble or calamity...or threatened with death...No despite all these things overwhelming victory is ours through Christ, who loved us. And I am convinced that nothing can ever separate us from his love. Death can't, and life can't...Our fears for today, our worries about tomorrow...can't keep God's love away."
(Romans 8:26,28,35,37,38)

I have so many verses I have written down and pondered during this long night. I am trying to believe them. "Help thou my unbelief!"
Anna should be in surgery for one more hour. They said we would get to go back to see her around 10am (9am in Oklahoma). Our nurse today is our friend Kelly. The hospital called her yesterday while she was at the zoo and asked her if she would come in today and take care of a transplant patient from out of state. She went home and checked our website and saw that it was us. She has been praying for us throughout the night. Thank you Lord for a familiar face!
I was in the chapel last night and I realized that if a thousand years is like one day in heaven--even if Anna dies, she'll only have to wait about an HOUR for me to get there. (That's one "Arthur" and a "Clifford" the way she tells time.) I am strangly comforted by that. It will seem like a long wait for me to see her again, but it will be very short for her. I know I don't sound very hopeful, but I am tired and I haven't seen my daughter in 14 hours. I keep looking at her pictures on the digital camera and sobbing. It makes me wish we had never gotten that call and we were still blissfully ignorant of what was going on inside her. Of course that would be postponing the inevitable, but if you are sitting where I am you just wish you could have another day of normalcy.
I will leave you with another verse that doesn't seem true, but I know it is.
"For our present troubles are quite small and won't last long. [even though it seems to us like forever!] Yet they produce for us an imeasurably great glory that will last forever. So we don't look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever." (2 Cor 4:17-18)
Breathing,
Marlo

Monday, July 24, 2006 6:05 AM CDT

I talked with the ICU nurse and she said that the doctors had taken a break after putting in the new liver. They are now doing the Whipple prodedure, which should take around two hours. I just looked up that procedure on the internet and it looks intimidating. I better stop researching and just try to stay awake.
Marlo

Monday, July 24, 2006 5:31 AM CDT

It's 6:30am here. They took Anna from us 12 hours ago. We haven't heard any updates since we spoke with the doctors at 1am. The waiting is so hard. We can't sleep. We just sit, pray, cry, and read God's word. Hopefully we will hear something soon.
Marlo

Monday, July 24, 2006 0:01 AM CDT

"I lift my eyes unto the hills. Where does my help come from. My help comes from the Lord, the maker of heaven and earth."

The surgeons just came out and talked to us. They found active tumor in Anna's portal vein and her pancreas is wrapped around and attached to the vein. They gave us the difficult choice of sewing Anna back up and taking her home or performing some terribly complicated surgery that will cause her much pain (in addition to the transplant). IF she recovers from the surgery, they cannot guarantee that the tumor will not return. What kind of choice is that? We had to make a decision quickly since Anna was still in the OR. We decided that it was better to die trying. I may regret that decision when I see how much pain she is in, but I didn't know how to take her home to die slowly. I would rather she die tonight than to watch her suffer and be afraid of dying. There was no good choice.
The surgery will last another 5-6 hours. It is very complicated and has a very difficult recovery. She may die from complications following the surgery.
She was feeling so good and so happy. I have so many pictures of her today--smiling on the airplane and in the ambulance. How can I do this to her? How can I not?
God help us. God help her. Don't let her be afraid. Don't let me be afraid. Take her quickly if all that is ahead for her is pain and suffering.
Crying out,
Marlo

Sunday, July 23, 2006 10:29 PM CDT

What a blessing to read the guestbook and see all of the people who are praying for us. THANK YOU!
A nurse came out about 10pm and told us that they were taking the old liver out and the new one was ready to go in. We assume that means that they didn't see anything to stop them from doing the transplant--YEA!
Today has been such an incredible day. Everything has gone so smoothly. Please pray for the family who lost their child and made the choice to donate. We are so grateful to them.
Love, Marlo

Sunday, July 23, 2006 8:26 PM CDT

It is almost 9:30pm here and we haven't heard anything since they took Anna at 6:30. Usually they have a runner who gives updates every hour during surgery, but that person obviously does not work on Sunday nights. We are the only ones in the waiting room---waiting. The liver should be here by now and I am hopeful that no news is good news. It has been a CRAZY 12 hours. I went for a long walk this morning and thought, "I need to get used to taking my cell phone with me on my walks--just in case." We were home getting the kids ready for church when Jerome called and told us the news. Richard was speechless and I was panicking. I had NOTHING packed. I was so NOT ready. I thought I had more time. Lesson for today--BE PREPARED! I ended up digging through the dirty clothes for Anna's panties because there were only 3 pair clean (she likes to change them quite often during the day.) We were only allowed two carry-on sized bags so I'm sure I will need to go to Target here in a few days for all of the things I didn't bring. The plane ride was great. We will never want to fly commercial again. We drove right up to the hanger. Someone met us at the car and walked us right to the plane. There was a full bar and lots of snacks. We didn't think today was the day to take up drinking, and we were fasting with Anna so we didn't get to take advantage of all they had to offer. They did have a tape deck with a nice selection of music including Michael Jacson's Thriller album. (My college roommates will think that's funny.)
I'd better head back up to keep Richard company.
Thank you for praying for us today and through the watches of the night.
Love, Marlo

Sunday, July 23, 2006 6:27 PM CDT

Praise the Lord, Richard, Marlo and Anna arrived safely in Delaware. Anna is now in surgery preparing to receive her new liver. The liver will arrive at 9:00pm (8:00 Oklahoma time). They expect surgery to last until 2:00-3:00am. Keep lifting up our sweet girl to the Great Physician. Because He lives, Shawna

Sunday, July 23, 2006 9:28 AM CDT

At about 8:45 this Sunday morning, the phone rang. It was our transplant coordinator with news of an offer for Anna. According to our coordinator, it was a very good offer -- "pristine" was the word he used. We called our Air Ambulance and will be leaving from Wiley Post at 10:45 this morning. We should arrive in Wilmington, DE this afternoon. We'll first have a CT scan to confirm that there is no tumor outside her liver. Then they will prepare her for surgery and need to actually open her up and do a visual examination to confirm there is no visible tumor outside the liver. These are two VERY important issues that could stop the whole process in its tracks.

Anna is excited about riding on the airplane. Please pray for:

1. Safe travel to DE
2. Clean CT scan;
3. No visible evidence of tumor;
4. Great surgery -- bless the hands of Dr. Casas and Dr. Dunn and the whole team. It will be a long day and night. Get rid of all the cancer!
5. Provide for our children here.
6. Peace for Anna. She is okay with everything but does not want them to "cut her open."

We also want to remember the family of the donor. It is a day possibility and hope for us; a day of loss for them.

Grace upon Grace and thanks to the Lord Jesus for even making this day possible,

Richard

Saturday, July 22, 2006 3:19 PM CDT

"I lift my eyes unto the hills. Where does my help come from? My help comes from the Lord, the Maker of heaven and earth."

That song is running through my head today!
We are having some great (and HOT) days this week. I truly feel that God has given us this summer as a gift. Anna hasn't felt this good since before she was diagnosed. She was on the couch for much of the last year and a half. Even though her cancer has returned she is feeling better than ever. I think it must have something to do with being off all of the meds she was on (we are down to 5). For whatever reason, she is feeling great and we are trying to make the most of it.
We went to a friend's house for dinner last night and we were still there when it was time for Anna to have her shot. Our friend decided he would take his shot with Anna--to show support. This morning she asked why Mr. Jim had to take a shot. I said it was because he was allergic to several things. Her eyes got big and she said, "Even monkeys?!" I laughed and said that he probably didn't know if he was allergic to monkeys.
Have a great weekend.
Love, Marlo

Thursday, July 20, 2006 8:43 AM CDT

"You can make many plans but the Lord's purpose will prevail." (Prov. 19:21)

Anna's handprint is in the Oklahoma paper today. She was part of a presentation of funds from Hyundai to Children's Cancer Research. She got to put her handprint on a car. Her picture didn't make the paper, but she was there! It was all very exciting with TV cameras, politicians, and CEO's. For a few minutes it was fun to be the one with cancer and have all of the attention. But soon everyone was gone and we were still there waiting for our lab draw and shot--not fun.
I used to be waiting for all of this to be over so that I could get back to my life. God has taught me that THIS IS IT. This IS my life now. There is no going back--we must continue steadily along this path. It's not one I would have chosen, but it's not all bad.
Love, Marlo

Tuesday, July 18, 2006 8:36 AM CDT

Well, things seem a little more real now. We have talked to the Air Ambulance folks and now have a number to call for transport after we get "the call". It will be very interesting (and exciting) to see how it all plays out. All of my babies were born via C-section so I never had one of those middle-of-the-night rush to the hospital events. This will be a doozy I'm sure.
We had a great day yesterday. We sent Jacob off to camp in the morning and went swimming at our friends house later in the day. The pool was the perfect way to spend a 105 degree day. Anna even got in a floated with me, which was a first. (The picture of her on the water slide was completely staged. She usually only puts her feet in!)
A BIG thank you to Incredible Pizza for a fun evening last night. They have been so kind to our famiy this year. We all enjoyed the food, games, and go-carts. (Don't tell Jacob we went without him!) We had to go before Anna's counts dropped and while she was feeling good.
Today we don't have any plans so we will see what happens!
Love, Marlo

Sunday, July 16, 2006 4:33 PM CDT

In 1 Chronicles 21 David sins by taking a census of the people. Why was that a sin? It showed that David was trusting in numbers and in his own strength and not in God. Last year I was trusting in statistics (80% survival rate for hepatoblastoma). This year I cannot trust in numbers because they are not good. Like Gideon's army, when does God receive the glory----with 32,000 or with 320? I pray that God will be glorified as I trust him as the only way. "HE is my strength. HE is my victory."
We were discharged around noon yesterday and had a nice day at home. This morning Anna went to Sunday School and had a great time. She loved the story/song time. This was the first time in her new Pre-K class. She told me she might be a little shy so I should stay with her. I love watching her with her friends so I was happy to stay. She took off her hat and everyone was surprised that she was bald again. They had just gotten used to seeing her with hair. She just casually said, "Oh, it fell out." I'm so glad she's four and not fourteen!
Love, Marlo

Friday, July 14, 2006 9:26 PM CDT

We have finished our chemo and will spend the rest of the night on IV fluids to protect Anna's kidneys. We are spending the night in the "penthouse"--otherwise known as the bone marrow transplant unit. It is very nice and quiet up here and we have a great view. Anna has enjoyed playing with the girl next door. For a while they were both painting in the hallway with the nurses. Anna also got to paint her sliding glass doors which she thought was pretty neat to do. All in all it has been a good day. The other kids spent most of the day with friends--thank you friends.
Love, Marlo

Thursday, July 13, 2006 9:03 AM CDT

This morning while it was raining I remembered a verse that I wrote in my journal a couple of weeks ago. It's about God making himself known to his people. "he never left himself without a witness. There were always his reminders, such as sending you rain...giving you food and joyful hearts." (Acts 14:17) God sends showers of blessing and times of refreshment. He even gives us joyful hearts! I think that I wouldn't appreciate the blessings if I didn't have the pain.
I am saddened this morning as I have learned of another child being sent home after the doctors said there is nothing more they can do. I try to prepare myself for that day, but there is no way to prepare yourself. God continues to remind me to live today and not in the future. I don't know what the future is. All I have is today. Today all of my children are sleeping in. It is so nice to have everyone under the same roof quietly sleeping. Tomorrow we will enter the hospital for chemo. After that, what happens may be a surprise to me, but it is not a surprise to God.
Lord, help me to trust you again and again.
Love, Marlo

Tuesday, July 11, 2006 2:36 PM CDT

We are listed for transplant. The surgeon told us that we would have to wait at least 30 days before Anna would get moved closer to the top of the list. We could get a call before then, but it is unlikely because there are other people waiting ahead of her. I am trusting that this is a good thing and that the extra rounds of chemo will continue to shrink the tumor and kill any cells that might be "floating". Dr. Casas said that we could go ahead and go to Disney World so we would have been able to go on our Make A Wish trip if I hadn't canceled it last week! Hopefully, we will be able to go after Anna recovers from her transplant.
Love, Marlo

Tuesday, July 11, 2006 11:23 AM CDT

No news yet. The CD of the CT did not get sent until yesterday so we may hear something today. Meanwhile we continue to enjoy the summer with our friends. Thanks Bob and Judy for having us over!
We will have round 3 of the chemo this Friday.
Love, Marlo

Sunday, July 9, 2006 2:49 PM CDT

We are so thankful that we were able to get a way for a couple of days. We just returned from visiting Grammy and Papa in Wichita and had a great time. We had to wait to make sure Anna's counts were good on Friday before we left-- and they were. We still haven't heard from Delaware about when/if they will list us. Hopefully we will talk to someone tomorrow.
Thank you Lord for no fevers, a sunny day, playing ball with cousins, a visit to CowTown, homemade strawberry icecream, a trampoline, running in the sprinkler after dark, and a safe trip.
Love, Marlo

Friday, July 7, 2006 7:01 AM CDT

This song today is for my "fellow prisoners". Because of Anna, we know so many people who are going through similar situations and must face the thought of losing their child every day. Our situation is not unique, "For no temptation has seized you except what is common to man..." (1 Cor 10:13)

So much pain and no good reason why
You've cried until the tears run dry
And nothing else can make you understand
The one thing that you held so dear
Is slipping from your hand
And you say

Why, why, why
Does it go this way
Why, why, why
And all I can say

Somewhere down the road
Therell be answers to the questions
Somewhere down the road
Tho we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will hold the answers at the end of the road

Yesterday I thought I'd seen it all
I thought Id climbed the highest wall
Now I see the learning never ends
And all I know to do is keep on walking
Walking round the bend singing

Why, why, why
Does it go this way
Why, why, why
And all I can say-- somewhere down the road
Therell be answers to the questions
Somewhere down the road
Tho we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will hold the answers at the end of the road

(Somewhere Down the Road, Amy Grant)

Keep on walking Leigh, Elena, Natalie, Audra, and the rest of you weary moms.
Love, Marlo

Thursday, July 6, 2006 8:29 AM CDT

"I will lie down in peace and sleep for you alone, O Lord, will keep me safe."
(Ps 4:8)

We made it through the CT scan yesterday and the preliminary report shows no tumor in Anna's lungs and improvement in the liver. We will be sending a copy of the scan to Delaware for the radiologist there to look at and then hopefully be listed. We are praising God for the improvement with this new chemo.
Anna needed platelets yesterday so we had to stick around after the scan for a couple more hours to get those. Thanks to Kristi for hanging out with the other kids all day. Anna had to miss her best friends birthday party yesterday because of her low counts. He came by after the party and brought her some cake, but I was sorry that she couldn't go. We are trying to find fun things that she can do. Please feel free to come visit us if you are not sick!
Love, marlo

Tuesday, July 4, 2006 2:23 PM CDT

We are back home. Anna's fever is gone and her white blood cells went from 0.5 to 0.6. They are still ZERO which is bad, but they seem to have "bottomed out" and are on their way back up--be it ever so slowly. This is the life of someone on chemo. I had forgotten what it was like. We will continue in this mode until Anna gets a new liver (assuming she gets listed this week.) The CT scan is in the morning so it is BACK to the hospital for a few hours.
It is so easy to become weary and dissatisfied with the way things are. I have been praying for a friend who needs to learn to be content with what she has. God has said, "HELLO! What about your own problem with contentment?" I thought because I was content with the sheets and towels I received as wedding presents 13 years ago that I didn't have a problem. I'm content with what I have, but I'm not content with everything God has given me. Whenever I think I have learned to trust, learned to rest, learned to be content---God "turns up the heat" and the dross in my life rises to the surface. Oh, the pain of being refined. I don't want to see the yucky stuff that is inside of me--nobody else can see it so why does it matter? God knows it's there and he loves me too much to leave it there. Can I survive the process? No. I must not. "It is not I who live, but Christ who lives in me."
Love, Marlo

Monday, July 3, 2006 9:28 AM CDT

Anna's counts dropped again today so we will be in the hospital at least one more night--maybe more. We spent last year in the hospital on July 4th. Someone told us that we could see the fireworks from the 5th floor so maybe we will try that. I am thankful that I was able take Audra to camp and Anna didn't spike a fever until I got home.
Anna cannot leave her room to go to the playroom so we are having to be creative in trying to entertain her. She still feels pretty good, but her low counts keep her in her room. She can have visitors as long as they aren't sick.
Pray that we will be thankful instead of grumbling about our circumstances.
Love, Marlo

Saturday, July 1, 2006 9:36 PM CDT

Marlo and Audra had a great time at the mom/daughters retreat. The boys and I had a great day fishing. Anna had a great day with her Sitti and Pop. Unfortunately, this evening Anna spiked a fever of 101.7 and we had to take her back to Children's Hospital to be admitted for cultures and antibiotics. I know Marlo was looking forward to being home tonight but she is instead back at the hospital with Anna (I tried to talk Anna into letting me spend the night but she wanted Mom).

Anyway, please pray that this fever is nothing to be concerned about and that her cough (she has had one since Wednesday) is taking care of also. And of course we have the CT scan coming up on Wednesday. This is probably one of the most critical scans we've ever had. If she is clean except for her liver, we will be listed for transplant in Delaware. We're still waiting to hear on transportation back to Delaware if a liver becomes available so that is another matter for prayer entirely. Anyway, if there is still suspected metastasis in her lungs or elsewhere, we're not sure what the next step will be. More chemo? Surgery? Stop treatment? We're of course hoping that we will get a clean scan.

For now, we'd just like to be home together for the July 4th holiday.

Richard

Thursday, June 29, 2006 3:58 PM CDT

"A person's words can be life-giving water; words of true wisdom are as refreshing as a bubbling brook." (Prov. 18:4)

Thank you to those of you who continue to refresh us with your words of wisdom and encouragement.
As I suspected, Anna's hemoglobin went down to 7.5 so we will be headed back up to the clinic tomorrow for a few hours. In a way I am relieved, because now I know that she should be good for the weekend and able to avoid a hospital admission. I will probably be the only other mom at the campout who starts her day with a blood tranfusion!
Love,
Marlo

Wednesday, June 28, 2006 4:47 PM CDT

"When I pray, you answer me; you encourage me by giving me the strength I need." (Ps 138:3)

I need to clarify something. We were not turned away by MD Anderson. They are willing to help us, but they do not do liver transplants. We were turned down by Texas Children's Hospital. We are okay with that. We know that if Anna gets a liver it will have to be by God's hand, in his time, AND in his place. As the verse from yesterday said, "He delights in every detail of our lives." The hospital we use is just one of those details. We are hoping that the transplant social worker will be able to arrange emergency transport from Oklahoma to Delaware so that we will be able to wait here. She is working on that right now. The first step is to hear from the insurance company-- of course.
Anna's hemoglobin was 8.1 yesterday so we will go tomorrow and get it checked again. She will probably need a tranfusion so we will do that Friday morning. If all goes well, I will be going on a Mother/Daughter campout with Audra Friday afternoon. Pray that nothing will hinder that time together. We both need it!
Love, Marlo

Tuesday, June 27, 2006 3:51 PM CDT

"The steps of the godly are directed by the Lord. He delights in every detail of their lives. Though they stumble, they will not fall, for the Lord holds them by the hand." (Psalm 37:23-24)

What a wonderful picture! If you have kids, you know they fall down a lot. But, if you are holding their hand--even if they stumble--you can keep them from falling. When you see this happen, you don't praise the child. You might say, "Good save Dad!" or "Way to go Mom!" The child has nothing to do with the save. The child would have fallen on his face if someone wasn't holding his hand. God says he is holding MY hand and keeping ME from falling. People say to Richard and I, "What faith!" and "How inspiring you are!" All we are doing is hanging on to our Father's hand. He is the one doing the saving. We are just trying to walk the best way we can. Richard told me he feels like one of those people being airlifted from their house during hurricane Katrina. He is just hanging there--it is the one rescuing who is doing all of the work and deserves the glory.

Last night we took our yearly trip to Pelican Bay. The kids had been looking forward to it for a week. We were trying to go before Anna's counts dropped. We drove for 30 minutes to find that the park was closed because of water contamination. The kids were so sad! We tried to cheer them up with ice cream and a swim in the neighbors pool. They were fine, but now we have to plan another trip!
This morning we went the clinic and enjoyed a patriotic celebration. There were representatives from the Coast Guard, Air Force, Navy, and Marines. Anna and Will got to have a part in the program and enjoyed being in the parade as we wound our way through the hospital. Thank you to everyone who made it a special day.
Love, Marlo

Saturday, June 24, 2006 4:32 PM CDT

Well, we made it through round 2. We got a late start yesterday because they didn't have any beds. We had to wait until someone was discharged. Luckily our nurse friend LeeAn called us and told us to wait at home so that we wouldn't have to sit in the waiting room. When we got to our room there was another girl there. Anna asked, "Is she my playmate or my roommate?"
Anna seemed to tolerate the chemo pretty well. She hasn't wanted to eat anything yet, but she is not throwing up. Thank you to Kerry and Shelley who stopped by and prayed over Anna while the chemo was going in. (They also thanked God for the chocolate cake that Anna was eating while she was getting her chemo!)
The door to Houston seems to be closed. They don't consider her chances good enough to justify another transplant. I imagine that is the same answer we will get this week from Integris. So it is back to Delaware. They are still willing to list her for transplant as soon as we know that the lung mets have cleared up. Hopefully that will be after her CT scan on July 5. One of the good things that has come of all of this is the contact we have made with Dr. Herzog at MD Anderson. She seems willing to help us with the oncology part of Anna's treatment. At least she will be someone our doctor's here can consult with.
Glad to be home,
Marlo

Thursday, June 22, 2006 10:38 AM CDT

"Though I am surrounded by troubles...Your power will save me. The Lord will work out his plan for my life--for your faithful love, O Lord, endures forever."
(Ps 138:3)

We have ridden the roller coaster again during the last 24 hours. We were waiting yesterday for test results, but I wasn't home when the nurse called. All she said was that she would call back in the morning. Of course we assumed that the news must be bad or else she would have left the results on the machine. We struggled again with fear and despair (our constant companions if we allow them). It was not an easy night. This morning I fought to praise God in the midst of the storm. I felt like I was flying in the clouds and being tossed about. I cried out, "Lord lift me above this! I can't stand being shaken like this again and again!" Somehow, by God's grace, we carry on even when we are walking through the valley of the shadow of death.
This morning Richard called and told me that he had talked to our doctor and that Anna's AFP was 5100. The doctor thought that it was UP from 4700 because that was the last number they had here in OKC. Richard told him NO it is DOWN from 15,000--the last number they took before they started the chemo in Delaware. The nurse didn't leave a message because she thought the news was bad, but it was GOOD. Can you believe it? Can you imagine the range of emotions we have had? Unfortunately, our doctor called the oncologist in Houston yesterday and told her that the AFP was up with the chemo. We said "Call her back!!!!!" We hope they will let us know something soon.
Meanwhile, Anna and Will are busy--oblivious to the drama surrounding them. So far today they have dumped out a canister of popcorn kernals all over the kitchen floor, eaten breakfast in their "boat", had a tea party, and now they have taken all of the forbidden pillows off the couch and made a fort. We are headed downtown for lunch with dad and a visit to the library. We will be admitted tomorrow morning for round 2.
Love, Marlo

Tuesday, June 20, 2006 1:17 PM CDT

Good news today. The last round of chemo did not do anymore damage to Anna's kidneys than was already there. This means they will be able to continue the carboplatin and not have to reduce the dosage. Her hemoglobin is creeping up (8.1) and her platelets are also rising (73). We get a few days without the shots until we have to start back on Sunday. We will enter the hospital Friday morning and should be discharged Saturday afternoon.
Texas Children's Hospital (Houston) called this morning and asked to speak to our oncologist. Continue to pray that we will find favor in their eyes and they will be willing to list us for transplant.
We should get the AFP results tomorrow that will tell us if this chemo is working.
We are enjoying this summer in spite of everything. Yesterday the boys took Pop bowling for father's day and the girls and I went out to eat and then to see a friend's new puppy.
I am still sad as I watch Anna's hair fall out. (Probably because it's harder to pretend she is not sick.) When she wakes up in the morning there is hair all over her pillow. She seems to be okay about it. It helps when we talk about what it will come back like this time. (She had straight hair and it came back curly.)
God is in control and we will continue steadily along his path.
Marlo

Sunday, June 18, 2006 10:59 PM CDT

We had a really great Father's Day weekend -- fun with the kids, hanging out, taking naps, and a great steak lunch after church today thanks to my Dad.

Unfortunately, Anna spiked a fever this afternoon, which meant the inevitable trip to the children's ER. We packed for the long haul (average stay in the ER has been about 4-5 hours in a very small room), but thank the LORD we set a record time today -- clocking in at just under 2 hours. The docs determined that everything was okay and we just needed to treat the fever with a little tylenol. So we're all back home tonight together again. We had planned to spend this evening with some friends but as it turned out just the three older kids got to go. But we're thankful they had a fun place to hang out while we were sitting in the ER.

We have a pretty big week ahead:
1. We will draw labs on Tuesday and by Wednesday afternoon have a good idea of how well her chemo is working. We're askng the LORD for a super-low AFP. For some reason, something under 6000 is what I'm hoping for but don't know why. Even lower would be better.
2. We have been exploring the possibility of working with a transplant center closer to home. We are supposed to hear back from the transplant team in Houston, TX early this week about whether they would agree to evaluate her for a transplant. If they agree, it would really be the LORD opening the door for us. From our view, it would be SO nice to be closer to home. Please pray that, if it is the LORD's will, that we would find favor in their eyes.
3. Anna has a kidney test on Tuesday and then is supposed to start chemo on Friday. But her kidneys really need to stay healthy to continue the chemo and of course we really need to continue the chemo in order to be eligible for a transplant so we can do more chemo...etc. etc. It 's all tied together we really need the LORD's favor every step of the way.

Thanks for all your prayers and blessings,
One Happy Dad
Richard

Sunday, June 18, 2006 10:39 AM CDT

These are the places I was so sure I'd find him
I looked in the pages and I looked down on my knees
I lifted my eyes in expectation
To see the sun still refusing to shine

Sometimes He comes in the clouds
Sometimes His face can not be found
Sometimes the sky is dark and gray
But some things can only be known
And sometimes our faith can only grow
When we can't see
So sometimes he comes in the clouds

Sometimes I see me, a sailor out on the ocean
So brave and so sure, as long as the skies are clear
But when the clouds to gather
I watch my faith turn to fear

Sometimes he comes in the rain
And we question the pain
And wonder why God can seem so far away
But time will show us, he was right there with us

(Sometimes He Comes in the Clouds, Steven Curtis Chapman)

Happy Father's Day to Richard, Pop, and Papa. We love you guys!
Love, Marlo

Saturday, June 17, 2006 10:15 AM CDT

I'm so glad I wrote that last entry while I was happy. I want everyone to know that there is joy in this journey. It is not all sadness. God gives us time of refreshing.
Yesterday Anna's hair started falling out again. I had forgotten that part of this process. She hasn't noticed yet. I'm sad, but I know that in a few days I will adjust to this too.
Her WBC continue to rise, but not enough to stop the shots. Her hemoglobin and platelets continue to drop, but not enough for a transfusion. They are 8.8 and 10--they have to be under 8 and 10. Pray that she won't start bleeding this weekend! Pray that her body will start doing what it is supposed to and we won't need a blood transfusion.
This morning Richard is trying out his Father's Day griddle on his grill. He is making chocolate chip pancakes and blueberry pancakes. What fun!
Love, marlo

Thursday, June 15, 2006 1:16 PM CDT

"hope in the Lord; for with the Lord there is unfailing love and an overflowing supply of salvation." (Ps 130:7)

That's the verse I am carrying around in my pocket today. I was looking back through my journal and remembering ALL of the times God has saved Anna from death.
I am so thankful for today! My kids were arguing over a worm a little while ago. I guess it was in the grapes that I washed because I found it in the sink. They were fighting over whose worm it was, what its name was, and what they should feed it. Of course a few minutes later Will came to me and said, "I dropped the worm." "Where?" "On the stairs." So now there is a worm on my stairs eating our carpet I suppose.
Tonight I have a date with my WONDERFUL husband and all is right with our world. Oh yes, my daughter still has cancer and needs a liver transplant and a miracle. But for today, God has "set me free from all my fears".
Love, Marlo

Wednesday, June 14, 2006 5:47 PM CDT

Oops! This is not Audra's first sleepover. Thanks MK for having Audra spend the night several times earlier this year when Anna was in the hospital. She LOVES going to your house!
Love, marlo
PS. No excitement today---yea!

Tuesday, June 13, 2006 8:00 PM CDT

Anna's counts are still low, but are on their way back up. We will continue the shots and check again on Friday. Her platelets are very low--14. They should be betweeen 150 and 400. They automatically tranfuse if they are below 10 so we are living life on the edge. She will be okay as long as she doesn't get a nosebleed. She is feeling good and even rode her bike around the block (with a little help from Mom).
Jacob and Audra are enjoying our church's Fine Arts Camp this week in the evenings. Jacob is taking hip-hop dancing and loving it. Audra switched from drawing to drama because the drawing teacher wanted her to draw what she saw. (Audra prefers drawing what she see in her head--not in front of her.) She is looking forward to her first sleepover at a friends house tomorrow night.
Will is covered with tatoos--some he got from Jacob and some he drew on himself. He insists on wearing jeans even though it's almost 100 degrees. He is his own person.
Thanks for letting me talk about my kids like a normal person. I do love being with all of them. I was praising God as we walked/rode bikes/scootered around the block today. It was a wonderful summer thing to do.
Love, Marlo

Tuesday, June 13, 2006 8:14 AM CDT

Oh what I would do to have
The kind of strength it takes
to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand

But the giant's calling out my name
And he laughs at me
Reminding me of all the times
I've tried before and failed
The giant keeps on telling me
Time and time again. "You'll never win!"
"You'll never win!"

But the Voice of Truth tells me a different story
The Voice of Truth says, "Do not be afraid!"
And the Voice of Truth says, "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of Truth

But the stone was just the right size
To put the giant on the ground
And the waves they don't seem so high
On top of them lookin' down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me

But the Voice of Truth tells me a different story
The Voice of Truth says, "Do not be afraid!"
And the Voice of Truth says, "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the Voice of Truth

(Voice of Truth, Casting Crowns)

This was my favorite song on my walk this morning. It is easy to listen to all the other voices in my head. I have to choose to listen to the voice of truth.
Blessings,
Marlo

Monday, June 12, 2006 10:09 PM CDT

Quick update.
We have managed to avoid a hospital stay this weekend. Anna's temp has stayed around 99.7. She is a bit more tired and not eating very much, but still playing and fighting. We will go for labs tomorrow--just to see if her WBC has bounced back yet. If it has, we may try to plan some fun activities before the next round of chemo (next Friday).
Although we are enjoying the familly time at home, I REALLY appreciate those of you who have invited the other kids to go do something. I love it when they get to have fun. Thanks also to Ms Kristi for babysitting today. Anna LOVES babysitters.
Love, Marlo

Saturday, June 10, 2006 10:29 AM CDT

Someone needs to tell Anna that she is sick. She certainly isn't acting that way! She was still awake last night at 10pm when we got back from our date night. Everyone else was asleep.
This morning she asked if she had to have a shot today. I said yes. Then she said, "Please can I just have fun?" I told her she had to have the shot and then she could have fun. If we do it first thing in the morning then she doesn't worry about it all day. She is supposed to take 12 pills in the morning in addition to the shot. Sometimes it's quite a battle. We now have a "medicine chair" where she has to go if she refuses to take the pills where she is.
I thought that if we did everything we were supposed to do and took all of this medicine that everything would be okay. I've learned that it doesn't always work that way.
Trusting and living,
Marlo

Friday, June 9, 2006 12:42 AM CDT

"Ignorance is bliss."

That's not in the Bible, but it's my motto today. We went for labs and I told them not to do an AFP. It wouldn't change anything at this point and I wanted to give the chemo more time to do it's work. We will check it next week. Unless you have ever waited for test results you don't know how stressful it is. I didn't want to even think about it this weekend.
It turns out we have other things to think about. Anna's WBC is 0.7 and her AGC is 84. (The WBC is usually around 4.0 and the AGC is usually in the thousands.) That means no field trips this weekend and an automatic hospital stay if she gets a fever. We will continue the GCSF shots to try to build up her immunity. She is still feeling great and is enjoying playing with her sister and brother. I'm trying to keep Jacob from coughing on her. He is feeling better, but still sounds like he has a cold.
Love, Marlo

Thursday, June 8, 2006 9:14 AM CDT

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen"
and it's still raining

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away

Chorus:
I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

As the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God
Who gives and takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

(Praise You in the Storm, Casting Crowns)

This is a song that was introduced to me by our friend Xander's parents. I think it was actually written by someone whose friends had a child with cancer.

We are enjoying some hot summer days. Anna feels good and is having fun in the blow-up pool in the back yard. She is also having fun picking fights with Will. He loves playing with her, but every now and then she pushes him just a bit too far.... We will go to the clinic for labs tomorrow. Hopefully we will be able to stop the GCSF shots. We also hope that the AFP goes down which will show that the tumor is "chemo-sensitive".

God continues to bless us through the generosity of our friends. This time it was Richard who had his wish come true. While he was in Delaware, his friends from work had a sprinkler system installed in our yard. They said they didn't want him to have to worry about the grass this summer. From meals, to babysitting, to sprinkler systems, we continue to feel God's loving care through the hands of others. Thank you. Thank you. Thank you.

Love, Marlo

Wednesday, June 7, 2006 9:36 AM CDT

Marlo and Anna made it home safe last night -- no major delays or problems. Anna was very glad to be home and she, Will and Audra played outside until it was dark. Then they came inside and played some more. Anna finally wore everyone out and we put her to bed after the other kids were asleep.

Jacob has some sort of cold and Marlo has pinkeye so we hope Anna can steer clear of those. We will have labs on Friday and we really need a huge drop in the AFP (her cancer number) in order for our transplant team to feel good about her long term chances.

Richard

Monday, June 5, 2006 4:16 PM CDT

Marlo had written a long, wonderful post for today but the computer accidentally dumped it. So, in its place -- a short summary. She and Anna are returning to OKC tomorrow (Tuesday) before Anna's counts drop too much. At some point after the chemo dose, her white cell and other counts drop very low and she is highly susceptible to picking up every germ that passes by -- so the last place you want to be is in an airport or on an airplane.

Anna is continuing to feel good and eat okay. She has had a few seemingly minor side effects but nothing too bad. We really need to protect her kidneys though since she is very close to losing the normal functioning of her kidneys. It is a classic case of the very thing that can save you can also harm you. If we don't do the chemo, the cancer will grow. If we do the chemo, it could ruin her kidneys.

So, matters for prayer are:
1. Safe (and uneventful) travel for Marlo and Anna tomorrow (this is a big one since more than 1/2 the time they travel alone there is a some problem).
2. That the chemo would be deadly on the cancer cells and avoid all the healthy tissue. Her AFP needs to drop far and fast this week. The last count was 15,000 so the tumor is growing rapidly and seems to be agressive.

Grace,
Richard

Saturday, June 3, 2006 8:07 PM CDT

It's 9pm and Anna has finally gone to sleep. She played hard all day until I finally said, "No more!" The doctor was surprised that Anna ate any lunch because most of the kids on carboplatin throw up. (Wait until he hears that she ate pizza and chili for dinner.)
She is peeing all of the time, but for now I am thankful because it is flushing the chemo out of her system. Tonight we talked again about the medicine that is "killing the weeds" in her tummy. She asked, "They aren't going to cut me open are they?" I have NEVER lied to her about her treatments. I may not tell her things, but if she asks, I tell her the truth. I told her that she may need a new liver. She cried and said she was scared and didn't want them to cut her open. I showed her my scar from my c-sections, but it didn't seem to help much. She went to sleep saying, "I hope the medicine kills the weeds." I hope so too.
I called home during the bday party and got to hear everyone having fun. I think Jacob and Audra had a great time. Thank you to Pam and David and everyone else who helped. Thanks also to my mom and sister who have had the kids for the past 10 days (and to Kirk and DeAnn who have had our other baby--Asta.)
Thank you for praying for us today. We really did have a good day.
Love, Marlo

Saturday, June 3, 2006 9:40 AM CDT

"the one who watches over you will not sleep." (Ps121:3)

I'm glad someone else was awake with us last night! It was a LONG night. We didn't start the chemo until 2am. The nurse finally left us alone around 4:30am. I thought Anna would be in bed most of the day, but she hasn't even let me take a shower. She wants to stay in the playroom and play. So far the only side effect has been that she didn't want to eat breakfast. We should be going back to the RM House later today or in the morning.
Love,
Marlo

Friday, June 2, 2006 10:24 PM CDT

It's 11:30 here and we still have not started the chemo. They are waiting for Anna's "specific gravity" to go down to 10. They keep pumping her full of fluids, but the number they are looking at is creeping down ever-so-slowly. I REALLY don't know if her kidneys can handle more chemo.
Marlo

Friday, June 2, 2006 6:34 PM CDT

It has been a long day and it's not over yet. Anna has been a trooper and is busy making up for the fasting earlier today. So far she has eaten two sandwiches, cheese, fish, pickles, popsicles, cornbread, and pretzels. I'm glad she is eating now because the chemo they are about to give her will make her sick. It was hard for me to sign those release papers again after reading the side effects. But as you know, we don't have any other choice. My biggest concern is her kidneys. They are already functioning on the low side of normal. Please pray that the chemo will be flushed quickly through her kidneys and not damage them further.
The good news today is that there is no cancer in her bones. Her strange gait must be the result of her weeks in bed so we will start PT.
Pray for us during the watches of the night tonight. Her chemo will be hooked up any minute now and will last a couple of hours.
I haven't told Anna yet that she is going to lose her hair again. Everyone tells her how pretty it is. I hope she won't mind too much, but she is older now and it might bother her.
Richard made it home safe last night. He will be joined by the kids tomorrow and they will celebrate Jacob and Audra's birthday at our friends' pool.
Love, Marlo

Things to be thankful for:
*Nurse Nan who brought her sewing kit and fixed Baby's arm.
*Nurse Star who brought Anna some books for her bday on her day off.
*Nurse Mary who takes care of me as much as she takes care of Anna.
*Dr. Powell, our oncologist this weekend who is from Texas (of course he can be trusted!)
*No cancer in her bones!
*A quick chemo schedule (our last one required being in the hospital a week)

Things I'm not thankful for:
*GCFS shots starting on Sunday. This is Anna's LEAST favorite thing in the world.
*The nurse forgot to take off Anna's tape while she was sedated this afternoon so now we will have to do it while she is awake. This is Anna's second least favorite thing.

Friday, June 2, 2006 6:44 AM CDT

I wonder how it must have felt
When David stood to face Goliath on a hill
I imagine that he shook with all his might
Until You took his hand, and held on tight

'Cause You were there, You were there
In the midst of danger's snare
You were there, You were there--always
You were there when the hardest fight
Seemed so out of reach
Oh, You were there, You were always there
You were always there

So there he stood upon that hill
Abraham with knife in hand was poised to kill
But God in all his sovereignty had bigger plans
And just in time, You brought a lamb

'Cause You were there,You were there
In the midst of the unclear
You were there, you were there always
You were there when obedience seemed to not make sense
You were there, You were always there
You were always there

So haven't I learned that my ways
Aren't as high as Yours are
And You alone keep the universe from crumbling into dust
You are God and though we would not have understood You
There You were
Hanging blameless on a cross
You would rather die than leave us in the dark
Every moment, every planned coincidence
Just all makes sense
With Your last breath

You were there, You were there
During history's darkest hour
You were there, You were there always
You were the Victor and the King
YOU WERE THE POWER IN DAVID'S SWING
YOU WERE THE CALM IN ABRAHAM
YOU ARE THE GOD WHO UNDERSTANDS
YOU ARE THE STRENGTH WHEN WE HAVE NONE
YOU ARE THE LIVING, HOLY ONE
YOU WERE, YOU ARE AND YOU WILL ALWAYS BE
THE RISEN LAMB OF GOD

(You Were There, Avalon)

I wanted to share the words of a song that has encouraged me the last few days. (I put my favorite part in caps.)
God continues to use music and his word to strengthen me for the day.
Love, Marlo
PS>
I wanted to record what Anna said a couple of nights ago so that I won't forget. The three of us were playing with glow sticks after dark. She was laughing and said, "I'm having so much fun, I'm not thinking about Audra, Will, and Jacob!" She misses them so much.

Thursday, June 1, 2006 2:41 PM CDT

"Let me live so I can praise you..." (Psalm 119:175)

Today has been hard. Richard left at noon. I think the anticipation of his departure was the worst part. After he left, Anna and I took a nap and now we are watching "Little House" and eating pretzels. We will get through this one hour at a time.
Tomorrow will begin with an echocardiogram at 9am, a bone scan from 1-4pm, then if everything is clear, the chemo will be administered after that.
Pray for Richard's safe trip home.
Thank you.
Marlo

Wednesday, May 31, 2006 7:22 PM CDT

"I rise early, before the sun is up;
I cry out for help and put my
hope in your words." (Ps 119:147)

Yesterday during the CT scan I thought MAYBE God would choose to do a miracle and everything would be gone. He didn't and it wasn't. In fact the tumors continue to grow and now there are two spots on her lungs.
We talked with the oncologist this afternoon and agreed on a course of treatment that will either start Friday or Monday. It involves a drug that they don't use here, but has been used with some success in France. Anna's cancer is so rare there is no "road map" of what to do at this point. We will try this and see what happens.
We had a kidney test today and will have a bone scan Friday. We have never had a bone scan before, but because of Anna's unusual gait, they want to rule out metastisis to the bone.
The one good thing in all of this is that this chemo regimen involves one dose (one day inpatient) and then three weeks off before the next dose. That means that Anna and I may be able to come home after we see how the first dose affects her. We may even be able to do our Make A Wish trip if they can bump us up a few weeks.
We continue to live one day at a time and don't make too many plans for the future.
Love, Marlo
PS. Thank you to those of you who are helping me organize Jacob and Audra's party!

Tuesday, May 30, 2006 6:41 AM CDT

You changed my world
When You came to me
You drove a passion
In my soul down deep
Lord, to follow You in everything

So come whatever
I'll stick with You
I'll walk, You'll lead me
Call me crazy or a fool
For forever I promise you that...

I don't want to go somewhere
If I know that You're not there
'Cause I know that me without You is a lie
And I don't want to walk that road
Be a million miles from home
'Cause my heart needs to be where You are
So I don't want to go

Without Your touch
Without Your love
Filling me like an ocean
For Your grace is enough
Enough for me
To never want to go somewhere
If I know that You're not there

(I Don't Want to Go, Avalon)

I listened to that song this morning on my walk and I think it pretty much sums up my feelings this morning as we prepare to enter the hospital for the next part of our journey---I don't want to go. "I don't want to walk that road, be a million miles from home...without Your touch, without Your love...For your grace is enough." I need to know that God has gone ahead of us and is carrying us in his arms (Ps 68:19).
"Trust me in your times of trouble, and I will rescue you, and you will give me glory." (Ps 50:15) I know that by "rescue" He doesn't necessarily mean that He will get us OUT of this situation, but it does mean that He will get us THROUGH it.
We will travel steadily along His path (Ps 37:34).
Love, Marlo

Monday, May 29, 2006 6:50 PM CDT

Happy Birthday, Anna!

We had a wonderful day together -- Anna woke up surrounded by balloons and opened her presents. We had breakfast then Anna played with some new friends here at the House. Then it was on to "Dutch Wonderland" -- it was an amusement park in Lancaster, Pennsylvania geared for kids. It was lots of fun and Anna proved herself to be quite a daredevil -- she liked the little rollercoaster and the fast, fun rides. We came home to a Willy Wonka themed dinner tonight plus a little time with the therapy dogs that make regular visits to the house.

I'm so glad we had a great day since tomorrow we start the journey again -- back to hospital for scans, then we start chemo, which will then hopefully dramatically affect the tumor, which will then pave the way for a new liver. For those of you praying specifically, here is our "wish" list:
1. The tumor really needs to stay confined to the liver;
2. The chemo needs to really impact the tumors(as evidenced by a big drop in her AFP -- the cancer number);
3. Her healthy tissue needs protection against the chemo -- she already has hearing loss, potentially serious kidney damage and who knows what else;
4. Most importantly, if we get all the above, then we need a new liver for Anna at just the right time.

Anyway, we are taking it one day at a time but it has the potential to be a very long journey. Thanks for all of you who have stuck with us thus far.

Blessings,
Richard

Monday, May 29, 2006 6:50 PM CDT

Happy Birthday, Anna!

We had a wonderful day together -- Anna woke up surrounded by balloons and opened her presents. We had breakfast then Anna played with some new friends here at the House. Then it was on to "Dutch Wonderland" -- it was an amusement part in Lancaster, Pennsylvania geared for kids. It was lots of fun and Anna proved herself to be quite a daredevil -- she liked the little rollercoaster and the fast, fun rides. We came home to a Willy Wonka themed dinner tonight plus a little time with the therapy dogs that make regular visits to the house.

I'm so glad we had a great day since tomorrow we start the journey again -- back to hospital for scans, then we start chemo, which will then hopefully dramatically affect the tumor, which will then pave the way for a new liver. For those of you praying specifically, here is our "wish" list:
1. The tumor really needs to stay confined to the liver;
2. The chemo needs to really impact the tumors(as evidenced by a big drop in her AFP -- the cancer number);
3. Her healthy tissue needs protection against the chemo -- she already has hearing loss, potentially serious kidney damage and who knows what else;
4. Most importantly, if we get all the above, then we need a new liver for Anna at just the right time.

Anyway, we are taking it one day at a time but it has the potential to be a very long journey. Thanks for all of you who have stuck with us thus far.

Blessings,
Richard

Sunday, May 28, 2006 10:34 AM CDT

"For His compassions never fail. They are new every morning" (Lamentations 3:22-23)

We are overwhelmed if we try to think about the weeks and months ahead. We have to take it one day at a time. In her book "God's Tender Care", Joni E. Tada reminds us of how God provided manna for his people during their time in the wilderness. They couldn't store it up, but had to be satisfied with just enough for one day.
"In other words, the grace God gives you and me today is sufficient for today only. Just like the Israelites I need to wake up in the morning, go out, and gather a day's supply...Grace, like manna, can't be stored. It is 'new every morning.' And God is the wonderful and willing supplier."
I am trusting that God's grace is sufficient for THIS day.
Love, Marlo
PS. Check out the new pics. They were taken at the cancer clinic in OKC. (Thanks Lisa!)

Saturday, May 27, 2006 6:04 PM CDT

We are trying to enjoy this time. This is the first time in a long time that we have been able to take Anna places and she doesn't look "different". For most of this past year she has been bald or had a tube in her nose so we have always gotten "looks" and special attention. Today we were at the park and no one noticed us. It's nice, but I want to shout, "Be nice to her, she's got cancer!"
Yesterday she asked me, "Am I going to stay little for a long time?" It turns out that she just didn't want to grow out of her new shoes. Today she asked me if she would get married when she grew up---I don't know.
I took her to her first movie at the theater today so that Richard could do some work. She fell asleep in the car so I stuck her in the stroller, pushed her in, then woke her up for the main feature.
Thank you for all of the notes of encouragement. We love to hear from you.
Love, Marlo

Friday, May 26, 2006 6:57 PM CDT

We are back at the RM House after a full day. Anna and I went "shopping" at the hospital gift shop with some money she got in a card today (thanks Aunt Shonda). Next we went to Payless Shoe store because Anna wanted some new flip flops. She ended up falling in love with some black Mary Janes which she is now wearing with her new lime green swimsuit. After lunch we went to the Natural History Museum and then to Longwood Gardens. We finished with dinner at Macaroni Grill (thanks to our friends at Kirkland).
We appreciate all of your notes and prayers.
Trusting,
Marlo

Thursday, May 25, 2006 7:58 PM CDT

"Now my soul is deeply troubled. Should I pray, 'Father save me from what lies ahead'? But this is the very reason why I came! Father bring glory to your name."
(John 12:27-28)

We had a difficult meeting today with the surgeons and the transplant coordinator. Anna's only chance seems to be more chemo and another transplant. She will be admitted on Tuesday for tests and then start chemo. IF her AFP goes down with the chemo, AND they can't find any tumors outside her liver, THEN they will list her for transplant after the first round of chemo. They want to keep us here because her liver is still not 100% and they aren't sure how it will respond. After our discussion, we all joined hands and Richard prayed for Anna and the doctors.

Anna is feeling so good right now. Tonight she put on her new dress and sunglasses and then danced to "Mousercize". She made a lot of friends in the sedation room Monday when they gave her some versed(sp?) and she sang every verse of "Found a Peanut". We will try to enjoy this weekend with her and do some fun things. Her birthday is Monday, but she already thinks she is four because she had her party before we left home.
Jacob and Audra have bdays next Sunday. I am having a hard time with the timing of everything. Last summer I left right after their bday. Pray that they will have a special day.
Taking one day at a time,
Marlo

Thursday, May 25, 2006 6:55 AM CDT

Be Thou my vision, O Lord of my heart;
Naught be all else to me, save that Thou art.
Thou my best thought, by day or by night,
Waking or sleeping, Thy presence my light.

2. Be Thou my Wisdom, Thou my true Word;
I ever with Thee, Thou with me, Lord;
Thou my great Father, I thy true son;
Thou in me dwelling, and I with Thee one.

3. Be Thou my battle-shield, sword for my fight,
Be Thou my dignity, Thou my delight.
Thou my soul's shelter, Thou my high tower.
Raise Thou me heavenward, O Power of my power.

4. Riches I heed not, nor man's empty praise,
Thou mine inheritance, now and always:
Thou and Thou only, first in my heart,
High King of heaven, my Treasure Thou art.

5. High King of heaven, my victory won,
May I reach heaven's joys, O bright heav'ns Son!
Heart of my own heart, whatever befall,
Still be my vision, O ruler of all.

(Be Thou My Vision, 8th Century Irish hymn)

Tuesday, May 23, 2006 9:15 PM CDT

No miracles today. The biopsy showed that she does have cancer in her liver. Right now there is no plan. There is no road map for this. Anna's cancer is so rare and this situation is even rarer. It's something the doctors have never faced. One of our options is to do nothing. We don't know yet what our other options are. They will have a plan to present to us on Thursday. Pray for Richard as he travels tomorrow. Pray for wisdom for the doctors as they discuss treatment. Pray for us as we make decisions. Pray for Anna. I know she can sense my sadness even though I am trying my best to shield her. I don't know how we can put her through everything again. She is so afraid of any medical procedure. Pray for the other kids. The separation is difficult for them. We all just want to be home together.
Love, Marlo

Monday, May 22, 2006 10:29 PM CDT

The biopsy went okay as far as know right now. They decided to admit Anna into the hospital just to observe her overnight since they finished the biopsy so late. The radiologist was able to get a good tissue sample, which is a good thing. We hope and pray that the results are negative.

There is also a stomach bug going around the Ronald McDonald house -- we hope and pray that Anna steers clear of that as well.

Tomorrow will be labs in the morning and hopefully discharge back to the RMH. I plan to head up on Wednesday. If we get good news, then I might be able to fly them back at the end of this week.

Grace,
Richard

Sunday, May 21, 2006 11:03 PM CDT

Please read Marlo's prior entry -- but I wanted to let everyone know that they have arrived safely in Delaware. No travel complications this time --- which actually is a first for Marlo and Anna traveling by themselves.

Monday will be a long day b/c the CT scan and biopsy is at 2:00 and Anna can't eat anything all day. We're hoping for some good news and to see the LORD's mighty hand at work.

Waiting for grace to be revealed,
Richard

Saturday, May 20, 2006 7:50 PM CDT

"Jesus told her, 'I am the resurrection and the life. Those who believe in me, even though they die like everyone else, will live again. They are given eternal life for believing in me and will never perish.'" (John 11:29)

What a day! Thank you to everyone who came to Anna's party today. She had a great time. Thank you to the Buchanan's who invited their friend Dora to come and dance with Anna. (Yes, THE Dora!) Thank you to Sams who gave us the cake for free. I think it had something to do with me crying when I was ordering it--of course it did say "Happy Birthday Hannah", but they fixed that. Thank you to Scott Yelton of Bounce 'N' Round who changed the date for the moonwalk at the last minute and even gave us some extra time. Thank you to everyone who had a part in making this a special day.
When I asked Anna who she wanted to invite to her party she said, "Nate, his mom, Mrs. Killion and her dogs." I kind of added a few of her other friends to that list. When her friend Ms. Kay thanked Anna for inviting her, Anna said, "I didn't invite you, my mom did." (Of course earlier when I said that I thought all of her friends were there, she said "Ms. Kay and Sittie aren't here yet!")
Some other things I want to remember;
When Anna opened the card that went to one of her presents she said, "I like cards with money in them."
When Mrs. Killiion's dogs came they gave Anna a cute stuffed puppy. Anna said, "I thought the dogs would get me a chew toy!"

Please pray for Anna and I as we travel tomorrow. We don't leave until 3pm so we will get to DE around 11pm. We will have to stay at a hotel and then move to the RM House on Monday. Pray for me as I navigate everything on my own. Anna will have her CT/biopsy at 2pm on Monday.

Trusting,
Marlo

Friday, May 19, 2006 5:32 PM CDT

Well, Anna's NG tube is out thanks to a little help from her brother. It seems she was ringing a bell in his face and when he tried to grab the bell, he grabbed the tube instead. When I came on the scene, the end of the tube (which was supposed to be in her stomach) was coming out of her mouth. So I just pulled it the rest of the way out. (Gross--I know.)
We are getting ready for Anna's big party tomorrow. She is excited. She said, "Is it May 29?" (Her real bday.)
Well, the kids are waiting for me to take them to Sittie and Pop's house for an evening of fun and food. Gotta go.
Love, Marlo

Thursday, May 18, 2006 9:28 PM CDT

Wow. What a day. We are trying to squeeze as much fun as we can into the few days we have left with each other. Today we pretended it was summer vacation. The kids skipped school and we met Richard at the zoo. I called ahead and told them why we would not be attending the "Dream night" sponsored by the hospital next month. They were happy to let us have our "Dream day" instead. We were able to ride all of the rides and feed the lorikeets as much as we wanted. We all liked the swan paddle boats the best.
We left the zoo and went to the school at 2pm so that we could see Will and Audra get their Terrific Kid awards. After school we went to Sonic and then home to play in the new Dora sprinkler. (Anna's early bday present from her brothers and sister).
At 5:30 I was expecting someone to bring dinner, but we got a BIG surprise. Instead of dinner, a s-t-r-e-t-c-h limo pulled up in front of the house. The driver told us to get in so we did. We had NO idea where we were going. The kids loved it! We were driven to Lansbrook park where the pavillion was decorated with balloons, a picnic dinner, and presents. There was a note saying that this was an early bday party from our friends. What fun! Our friends soon came out of hiding and took some pictures then left us on our own. They wanted us to have some good family memories. What a gift!
After dinner we got back in the limo and went to some friends' house, then to Braums for ice cream.
We got home at 8:30 and three of the kids went right to bed. Anna and Richard are still awake trying to figure out how the Polly Pocket Limo works.
I can't reconcile what I know to be true, with the little girl I see playing in the sprinkler and dancing to her Dora music in the back of a limo.
Thank you Lydia, Shelley, and Shawna for the memories.
Love, Marlo

Thursday, May 18, 2006 8:31 AM CDT

"people are like grass that dies away. Their beauty fades as quickly as the beauty of flowers in a field. The grass withers and the flowers fade beneath the breath of the Lord. And so it is with people. The grass withers, and the flowers fade, but the word of our God stands forever.....
O (Marlo), how can you say the Lord does not see your troubles? How can you say God refuses to hear your case? Have you never heard or understood? Don't you know that the Lord is the everlasting God, the Creator of all the earth? He never grows faint or weary. No one can measure the depths of his understanding.....
Has the Lord ever needed anyone's advice? Does he need instructions about what is good or what is best?...

I am holding you by your right hand--I, the Lord your God. And I say to you, 'Do not be afraid. I am here to help you.'" (from Isaiah chs. 40 and 41)

How can someone plan their child's last birthday party? How can put away the clothes my older daughter has outgrown and know that her sister will never grow into them? How do I answer the question, "Mommy, why are you giving me this ball before my birthday?" (Because I want you to be able to play with it for a few days before you have to go back to the hospital. But I can't tell you that--not yet.)
That was my day yesterday. Hard. Life is so hard.
I was reading a book last night that talked about how our best--a long life with our children--does not compare to God's best. It's like a baby in the womb. He is content to stay there. It's warm and cozy and all his needs are met. He doesn't know there is a world outside the womb. It's the same way with us on this earth. It is all we know and we cling to it with all we have. We don't know that there is something else beyond what we can see. Just as the baby outgrows the womb, we outgrow/outlive our "earthsuits". If the baby only knew the wonderful things in store for him he would want to leave his safe little cocoon. If we only knew what was in store for us, we would long for God's best.
I have a LONG was to go before I can live what I say I believe. I hurt and I want the pain to stop, but it doesn't. I have to learn to live through it. One day at a time. One step at a time. One breath at a time.
Love, Marlo

Tuesday, May 16, 2006 5:09 PM CDT

Dear Friends and Family,
I have some difficult news. The CT scan from Monday showed two spots of concern on Anna's liver. There is the very real possibility that these spots are recurrent tumor. I am sending Marlo and Anna back to Delaware this Sunday for a biopsy on Monday. We should have the results back mid-week and if it is tumor, we will have to make some significant decisions. It may be that they could remove the tumor surgically and then follow up with additional chemotherapy. It also is a possibility that the tumor is unresectable (ie. they can't remove it surgically) and that the only solution is a second liver transplant. We don't have this week's AFP back but expect it to still be climbing if indeed the cancer has returned. At this point we really just have lots of questions and "what-if" scenarios. The biopsy itself is a risky procedure and the presumed cause of Anna's internal bleeding back in March. So that alone is a matter for prayer.

So, in short, we are discouraged but not without hope that the LORD will see us through yet another dive on the rollercoaster. Anna continues her "super-charged" ways and is starting to go without a nap. It makes it especially hard to believe that the cancer has returned when you see her acting so strong and healthy.

We are in need of yet another miracle, perhaps our biggest yet. Our prayer is from the book of the Acts of Jesus' apostles, chapter 4, verse 29, where the Lord's followers asked Him to "stretch out Your hand to heal and perform miraculous signs and wonders through the name of Your holy servant Jesus."

Grace,
Richard

Monday, May 15, 2006 7:33 PM CDT

Just a short note.
The CT today was quick and painless. They are overnighting a CD rom of the scan to our docs in DE because they have the last two to compare them to. No labs results yet, which either means the numbers weren't back yet or that the nurses were busy and forgot to call. Either way, we will know more tomorrow.
Marlo

Sunday, May 14, 2006 7:36 PM CDT

We have had a great Mother's Day. We ALL went to church. (I can't remember the last time that happened.) Then we had a wonderful lunch at Sittie's house compliments of our friends Sid and Mary Beth. We usually go to the Cowboy Museum for the Mother's Day buffet, but this year they brought the buffet to us!
We spent the rest of the day relaxing and planting flowers.
We have our CT scan (the "donut test") tomorrow at 11am. Anna is getting so good at them that she no longer needs sedation. It still isn't easy because she can't eat for 8 hours before the test and she has to drink several cups full of "contrast" to get ready. I don't really know how to pray for the results. If there is tumor I want them to see it so that we can get rid of it, but of course I don't really want there to be any tumor. The next few weeks are going to be busy with the end of school and 3 birthdays. It's not a good time to fly to DE for surgery. There I go making MY plans again. Every time I begin to plan ahead, God reminds me to take it one day at a time.
Happy Mothers Day!
Love, Marlo

Friday, May 12, 2006 4:01 PM CDT

Just a note to let you know that I am okay! It has been a crazy day so far. Last night I attempted to change the tape that holds Anna's NG tube on her face. This is a HUGE deal to Anna because she HATES tape. I thought it needed to be done because it looked like the tape was about to fall off. As I peeled the tape off (with Anna screaming and wiggling) I pulled out the tube. Not all the way, but pretty far. Now both of us were screaming and I put the tube back in the way I had seen the doctor put it in the first time. (I'm not a doctor, but I play one at home.) I was worried that it might not be in the right place so I called the pediatrician this morning to see if she could check it for me. She told me to come in at 1:45. As soon as I hung up the phone, I got a call from the school telling me that Audra had won the "Principal's Award" and would receive it at the all school assembly at 2:00. So I changed the doctor's appointment (the tube was fine) and went to the assembly. Congratulations Audra!!!
One other note on Audra: Last night we had Audra's teacher over for dinner. I had the kids go around the table and say one thing they liked about her. Audra's answer was, "I like Ms Vestal because it's like having a mom at school." Thanks Ms Vestal for all of the extra TLC you gave Audra this year.
Love, Marlo

Thursday, May 11, 2006 8:53 PM CDT

"Some sat in darkness and deepest gloom, miserable prisoners in chains...Let them praise the Lord for his great love and for all his wonderful deeds to them. For he broke down their prison gates of (despair) he cut apart their bars of (discouragement)." Ps. 107:10,15,16

Sometimes it takes awhile to process bad news before we want to talk about it with anyone else. Anna's labs this week showed that her AFP continues to rise and is almost at 3000. I told Richard that if there is anything worse than getting cancer, it's getting it again. Yesterday I felt like the verse above--like I was miserably chained to despair. I knew I was sinning, but I didn't know how to get out of the "pit". No gifts, food, shopping sprees or Make-A-Wish trips can relieve the pain. It's hard to understand, but the only thing that can break down the prison gates is praise and thanksgiving to the one who is allowing the difficult circumstances. Anger and blame gets you no where. "In quietness and trust is my strength." Some days are better than others. I have to choose to trust God with every lab test, CT scan, and phone call from the hospital. How many times do I have to release my daughter to his will? Every time.
These are good days for us and I don't want to ruin them by worrying about the future.
Give us THIS day Lord...
Love, Marlo

Tuesday, May 9, 2006 1:00 PM CDT

THANK YOU to all of you who gave me the names of PT's. Someone who works with Richard's mom saw the website and called her daughter who is an OT at the Children's Center. She talked to her friend who is a PT there and she said that she had been praying for Anna because she is in a Sunday School class with someone who works with Richard. It's a little confusing, but I figured that if there was a PT who had prayed for Anna, then that was who I should call. Anna seems to be walking a little better, but still goes very slowly and likes to have some help.

We had more labs drawn today. It was Mother's Day at the clinic. They pampered the moms with massages, make-up, portraits, and a tea party. What fun! Of course in the midst of all of this there were nurses coming out to get kids for labs and other painful procedures--not your typical party. Anna enjoyed making me a mothers day door hanger with the help of some volunteers. She also was happy to see her friend Ms. Kay.

After the clinic we met Sittie and Pop at Bubba's for the best BBQ in OKC. Anna found out that she likes BBQ turkey better than chicken strips. She blew kisses to Bubba so that she could get free suckers after lunch. Thanks Bubba!
We are really having a great week. What a gift from God!
Love, Marlo

Monday, May 8, 2006 12:19 AM CDT

We just got the lab results and we aren't sure if they are good or bad. We were prepared for another big jump in the AFP, but we hoped for a reduction. We didn't get either of those things. It seemed to stay about the same with perhaps a slight increase. We are relieved that the number didn't double, but we are left with uncertainty. God is continuing to teach us to walk by faith and not by numbers. We want to trust in the One who is able to do more than we could ask or imagine.
Meanwhile, we are enjoying these days home together. Anna is feeling great and has lots of energy. She even feels good enough to be naughty! She is looking forward to turning four later this month.
Love, Marlo

Saturday, May 6, 2006 7:57 PM CDT

Be still my soul
The Lord is on your side
Bear patiently
The cross of grief or pain
Leave to thy God
To order and provide
In every change
He faithful will remain.

Be still my soul
Thy best, thy heavenly friend
Through stormy ways
Leads to a joyful end.

Be still my soul
The waves and winds still know
His voice who ruled them
While he dwelt below.

("Be Still My Soul" by Katharine Von Schlegel)
Arrangement by Selah

We had labs done yesterday, but no results yet. In a way it's nice because we didn't get bad news, but it is always stressful waiting for the numbers. Even if you aren't thinking about it, the tension is there. We are trying to "brace for colder winds" and still hope for the best.
Anna's doctor prescribed physical therapy for her since she still isn't walking on her own. The Children's Center has a two month waiting list for new PT patients. We are trying to find someplace close to our home since we will be going 2-3 times a week. If anyone knows of a pediatric PT please let me know.
Love, Marlo

Wednesday, May 3, 2006 9:39 AM CDT

"I cried out, 'I'm slipping!' and your unfailing love, O Lord supported me. When doubts filled my mind, your comfort gave me renewed hope and cheer."
(Psalm 94:18)

Surprise! We're home! For those of you who read this site, purely for the entertainment value, we hate to disappoint you so we will continue to have cliff hangers, drama, and plenty of action.
Yesterday I was preparing for Richard to leave us behind. This was VERY difficult, but I was trying to be strong. I had unpacked our suitcases and settled back into the room. I even went to the store to stock up on things that we would need. Richard was set to leave at 3pm to drive to Baltimore to catch a 7pm flight. At 2pm we checked in with Louise and she said that the surgeons and radiologist had just had a meeting about Anna. They went back over the CT scan and still could not see any tumor. They felt like if it didn't show up on the CT scan that it wouldn't show up on the MRI either. They want us to repeat the CT scan in a couple of weeks to see if they can see anything then. We can do that in Oklahoma so she said we could leave. We said "ARE YOU SURE?!" I ran upstairs and packed our bags again, cleaned the room again, and checked out AGAIN. We called our parents and told them, but I wanted to surprise the kids. We got in about 11pm so when Anna and I woke them up this morning, they were surprised!!
Nothing has changed except our location. We are still living with the threat of cancer. As we were flying above the clouds yesterday it was beautiful and peaceful. As we started to go down, it became bumpy and stormy. I decided that even though things are not perfect, I want to live above the storm and not in it. The storm hasn't gone away, but there is peace and calm if I can rise above my circumstances and trust in the One who never changes.
Love, Marlo

Monday, May 1, 2006 6:35 PM CDT

I don't even know what to say. We were packing to leave this afternoon and we got a phone call. Anna's AFP today is over 2,000. It was 800 on Friday so this is a big jump. The doctor feels sure there must be something there that they are not seeing. They want to do an MRI which means that Anna and I will have to stay. Richard doesn't want to leave, but I am encouraging him to go home to the other kids. My heart breaks that I can't be there with them so I will feel better if they have one of us. We don't know how soon they will be able to schedule the MRI so we are here indefinately. I knew this was a possiblity, but I didn't really think it would happen. I think I'm still in a state of shock. I've managed to hold it together except for when I was talking with the pet therapy lady after dinner (this year I have also been known to cry on the shoulders of the mail lady and the food delivery lady--it's all in the timing.)
I do not know how I will get through this except by God's grace--one day at a time. I can cry and scream, but in the end I have to be willing to trust God's hand in all of this. How may times can we relax only to have our world turned upside down again? God is not limited by time or space. He knows how this will all work out. I MUST trust him because I know there is nothing else I can trust in this world.
Thank you for continuing to pray. I'm not sure why our prayers are being answered in this way, but do not lose heart.
Love, Marlo

Monday, May 1, 2006 1:31 PM CDT

Quick update -- labs this morning came back okay (some up a little, some down a little) so there is no reason for us to stay. We're not exactly in the clear but her CT scan did not show visible tumor, which is good, and her liver continues to function at acceptable levels.

Anna is still feeling good and fiesty and even seems to have an increased appetite, so there are lots of things to be thankful for. We will return to OKC tomorrow and continue with our routine and hope and pray the GGT and the AFP (the dreaded cancer number) comes down. The AFP will not really tell us anything until they either find tumor (which they haven't thank the LORD) or the hematoma in her abdomen is completely resolved (which will take who knows how much longer but it is looker better, again thank the LORD). All for now.

Grace abounding,
Richard

Sunday, April 30, 2006 8:05 PM CDT

Today was a great day -- just relaxing and refreshing with no emergencies or trips to the clinic or the hospital. It was truly a Sabbath for us. The weather is perfect and we spentthe afternoon at a "country estate" of one of the duPont's (not a personal invitation, it's now a museum open to the public). It had several areas just for kids and Anna had a really good time. Her appetite was better today and she is walking a little better and showing us lots of energy (very short nap today and still wasn't ready for bed tonight). She does miss her bros and sister back in OKC.

We will have another set of labs in the morning and hopefully get good results. We really need her "GGT" and her "AFP" numbers to come down dramatically and for everything else to stay good. Sometimes it's like trying to keep plates spinning all at once -- it's easy to keep a few going but you're always dropping one or two. In the same way, we have been blessed with mostly good numbers but there's always one or two that go out of whack when the others come on line. But we're thankful that Anna feels good and is acting like her usual self.

If all goes well tomorrow, we'll probably be allowed to come back to OKC on Tuesday. If not, I have no idea what the plan will be. The transplant team meets on Monday afternoons to review all their cases and I'm sure they'll discuss Anna.

May the grace of the Lord Jesus be with you all,
Richard

Saturday, April 29, 2006 9:52 AM CDT

Sorry for no update yesterday Shonda! I started getting sick Thursday night with what I though was allergies. Now I think it is just a bad cold. Whatever it is, it kept me in bed most of the day yesterday. We took Anna for repeat labs at 4pm then went to Chili's for dinner (thanks to our friends from Kirkland!) We had just gotten our food when the phone rang. It was the doctor telling us we needed to take Anna to the ER right away because her potassium was so high it could cause heart problems. She looked okay to us as she ate her chili and broccoli, but we packed up our food anyway and went. When we got the ER, they did and EKG and repeated the labs. When we finally got the results back, her potassium was within normal limits so we went back the RM House and went to bed.
Today we are waiting for the rest of the team to look at the CT scan and labs. The first doctor who saw the scan said he had never seen a hematoma that big. Of course it was bigger a few weeks ago! So far they have not identified any metastisis. No one knows how high the AFP can go after a bleed like Anna's. (900 is VERY high though.) We may just have to wait for the blood to be reabsorbed and the liver to recover to see what will happen.
We will probably be here until at least Tuesday. Thanks to you who are helping out with the kids. It sounds like they are having a good time. Is there anyone out there who would like to dog-sit a cute little schnoodle?
Thanks also to those who helped Richard with my surprise party last Saturday. It was my best birthday ever (and it wasn't even my birthday!)
Love, Marlo

Thursday, April 27, 2006 10:13 AM CDT

Just wanted to let you know that they made it to Delaware safely. Labs were drawn this morning. Anna is enjoying being outside now and will have a CT scan at 2:00 (1:00 OK time). Please be in prayer, Anna's AFP has gone up. We will know more tomorrow. Praying with you for complete healing for our precious girl! -Shawna

"..I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth..."

song: Praise You in this Storm
Lifesong record by Casting Crowns

Monday, April 24, 2006 8:56 AM CDT

In short, we had a good weekend, Anna is feeling good and eating good and trying to walk around on her own. We have labs this morning and then leave Wednesday for Delaware. Hopefully we will have a CT scan, some labs, and all will be well. The main concerns right now are any remaining blood in her abdomen and most importantly (to us) her AFP -- last check it was 721. This is the "cancer" number that is supposed to remain below 10. We're hopeful that this elevation is the result of all the damage to and regeneration of her liver over the last 5 weeks but we haven't received a lot of support for that theory. Elevated AFP usually means a cancer recurrence and more surgery and chemo. I just don't know how much more her little body could take so we hope and pray that Anna's recovery will continue, that her AFP will come down, and that the CT scan will be clean.

Marlo will write more later I'm sure -- just wanted to give a quick update.

Richard

Friday, April 21, 2006 9:36 PM CDT

We avoided a hospital admission yesterday. Anna's temp went down, but her WBC count was high (which can indicate infection). They hooked her up to some IV antibiotics at the clinic and let us go home when they were finished. Today her temp has stayed down and she is feeling pretty good. She still can't walk, but she has been playing with her brother and sister as much as she can. We also made it up to the school for 89er day so that we could see Jacob and Audra doing their square dancing. As we were leaving Anna wanted to play on the playground. I said, "You can't walk. How are you going to play?" She had me carry her to the steps which she climbed up and then Jacob helped her walk to the tunnel which she crawled through--not bad.
We have our tickets for Delaware this week. Hopefully it will be a short trip.
Love, Marlo

Thursday, April 20, 2006 10:10 AM CDT

On days of gray, when doubt clouds my view,
it's so hard to see past my fears.
Strength seems to fade and it's all I can do
to hold on 'till the light reappears.
Still I believe though some rain is bound to fall
that you're here next to me, and you're over it all.

Lord the sky is still blue for my hope is in you.
You're my joy. You're the dream that's still alive.
With the wind at my back and the sun on my face,
you are life. You are grace.
You are blue skies.

When nights are long, seems the dark has no end,
still we walk on in light of the truth.
For waiting beyond where the morning begins
is the dawn and your mercies anew.
O to believe we're alive in your love
There is so much to see, if we keep looking up.

("Blue Skies" by Grant Cunningham)

That is a song I have listened to over and over again this year. If you have ever spent time in a hospital you know that the nights are very long, but I know that even during this dark time that God has not changed. He is like the sun that is shining even when we can't see it here under the clouds.

Yes we are home, but we are planning a trip to DE as soon as it can be arranged. Anna's AFP is very high which could mean that the cancer is back. We can hardly believe that we may have gotten through the past month and saved the liver, only to have the cancer return. We are still hopeful that the high AFP is a result of her liver regenerating and not tumor growth. Besides that, Anna's temp is up to 101.4 right now which may mean another hospital admission today. Every time I tell God "I can't do this!", he says "But you are. Don't give up."
So even though as the song says, "it's so hard to see past my fears", I will "hold on till the light reappears" and trust that God is over it all.
Love, Marlo

Tuesday, April 18, 2006 9:26 AM CDT

Good News! We were discharged from the hospital last night. Anna still has the recurring fever but the best guess right now is that it is the result of the blood in her abdomen being broken down and reabsorbed through her system. All we were doing at the hospital was sitting around taking medicine and watching her temperature go up and down so they decided we could do that at home.

We have a variety of local follow appointments over the next few weeks (starting this afternoon with a kidney specialist) and then will take a (hopefully) short trip to Delaware for a reassessment by our transplant team. So we're still asking the LORD to take away this fever and completely restore her little body to good health. She tried walking on her own for the first time and made it a few steps by herself without needing help. This was encouraging.

A few days ago, I read that Jesus told his disciples a particular parable "to show them that they should always pray and not give up." (Luke 18:1). Thanks for perservering with us and not giving up on Anna even when the journey seems like it gets harder rather than easier.

Pursuing Grace,
Richard

Sunday, April 16, 2006 10:04 PM CDT

We had a wonderful Easter holiday today. Anna got a 4 hour "pass" from the hospital to come to my folks (Richard's) house for a delicious Easter dinner, Easter baskets, and a long nap. She had to go back to the hospital tonight, but I think the break did her a little bit of good. She still needs to eat better and regain her strength. But her fever was down today -- we really are asking the LORD to take that away once for all unless we are supposed to learn something from it.

We have an important meeting tomorrow morning with the hospital/transplant team here -- they need us to make some decisions about Anna and get a battle plan together. It may involve staying in OKC longer, it may involve a trip to Delaware -- we just don't know. We need the LORD's wisdom since I don't know what He has in mind for us.

The Grace of the Risen Jesus Be With You All,
Richard

Saturday, April 15, 2006 6:28 PM CDT

Happy Easter!!!
Usually the days before Easter are spent having egg hunts and shopping for new clothes. This year I was different. I was really able to think about what it must have felt like for the disciples after Jesus died. They must have been confused and hopeless as they wondered what would happen to them. I too have been tempted to despair over our current circumstances and our uncertain future. But unlike the disciples, I know about the hope of Easter. They didn't know that Jesus would return, but I know he did.
We are still in the hospital and will be there until ? Anna ran a fever all day yesterday, but this afternoon it is back down. If it goes above 101 we will do another CT scan. Meanwhile we are just watching and waiting.
Pray for endurance and wisdom and strength.
He is risen,
Marlo

Thursday, April 13, 2006 10:43 PM CDT

Anna has remained fever-free so far today, so we may be able to go home tomorrow. They put the NG tube in so that we can make sure she is getting enough calories each day at home. That will be something new to add to our list of medical experiences.
Thank you for the outpouring of love and support we have had the past month. We have been blessed SO MUCH. I continue to meet people at the hospital who do not have the support we have. My prayer tonight is that we would be able to bless others with the blessings we have received.
I want to invite everyone to the Northwest Baptist (OKC) Easter Pageant this weekend. Our oldest son Jacob and his grandpa ("Pop") are playing Abraham and Isaac in the opening scene. There are three performances--Friday at 7pm and Sunday at 9am and 11am.
No matter where you are this weekend I hope you will celebrate Easter and the new life it promises.
Love, Marlo

Thursday, April 13, 2006 1:09 PM CDT

The wisest man ever (except Jesus) said, "When times are good, be happy. When times are bad, consider: God has made the one as well as the other. Therefore, a man cannot discover anything about his future." (Ecclesiastes 7:14). A man cannot discover ANYTHING about his future. I literally do not know what will happen in the next day, hour, or minutes. And apparently, the LORD has designed it that way, perhaps so that we will constantly look to Him for guidance. In any event, we are headed down a road to only God knows where (literally) and all we know for sure is that He is good and His Word is true.

Anna is still in the hospital. Her fever came down on its own, which good it seems, but we'll see if it comes back this afternoon. The docs are concerned about her kidneys so we're waiting to meet with a specialist for that. And she is not eating well so they are considering putting the feeding tube back in through her nose. As bad as this sounds, we think it is a good idea. Except for her distended belly, she is just skin and bones -- really. She has no muscle mass to her right now and is too weak to walk (though she can still talk a lot!). So again we find ourselves waiting and praying for the LORD to reveal His direction and purposes, affirming that ALL things work together for good.

Thanks to all of you who have thought of Anna often, kept up with the website, prayed for Anna, and have forwarded her website to friends and family. It is so amazing to check the site each day and find posts not only from our closest friends and family but from people we've never heard of and will never meet until eternity. I wish I could reserve a banquet room in heaven for Anna to someday meet all the people who have lifted her up to Jesus for healing and grace.

Living under His grace,
Richard

Wednesday, April 12, 2006 8:26 PM CDT

Well, less than 24 hours after coming home, Anna spiked a fever this afternoon and we are back in the hospital -- same floor. Not sure what the issue is but hope to figure it out soon.

Richard

Wednesday, April 12, 2006 8:53 AM CDT

We are still home, thank the LORD. I'm sure Marlo will check in later but we're hoping for a good day, fever-free with a good appetite and lots of energy. Anna did ask for a shoulder-ride down the stairs this morning, which was a little surprising, but I was happy to oblige.

Resting in His Grace,
Richard

Tuesday, April 11, 2006 9:56 PM CDT

We are home tonight -- hopefully for a while. But Anna is running a temperature (about 99 or so). If it continues to go up, we'll have to return to the hospital. That would be pretty discouraging. If you're reading this before bedtime, please say a little prayer for Anna's temperature to stay down tonight so we could all have at least one good night's rest together as a family.

Anna has an appointment with a kidney doctor in a week or so - her kidney function isn't what it should be so we need to get that checked out. And we haven't even checked her cancer number for several weeks. So all in all, we're glad to be home, but Anna is still a sick little girl. We're just hoping for continued improvement and better days ahead.

In need of His grace,
Richard

Tuesday, April 11, 2006 12:24 AM CDT

Just letting you know that we're not home yet. Not that we've heard anything to the contrary, we just haven't heard anything yet. Anna is doing okay -- still a little better every day -- but the doctors haven't come by for their daily review and (we hope) discharge. Having been in the hospital a time or two, we know that sometimes things don't happen until later in the day so we're still hopeful but also know that it is possible they'll want us to spend another night here.

Thanks,
Richard

Monday, April 10, 2006 3:24 PM CDT

Quick update: We expect to go home tomorrow. The docs want her to finish out some antibiotics and then we'll watch her this week to see if a fever returns or anything else develops. But she seems to be fairly stable and her liver numbers (except one) are way down and in the normal range. Those of you who pray specifically could ask that her "GGT" come down and that she could get off all these vitamin/mineral supplements. It seems like every day they add this or take away that or adjust this or that. She is not getting around hardly at all and I know she just feels like she will break at any moment. So we're asking for strength of spirit and will as well as her body. As far as she's come, she's still a sick little girl. But all in all, home is the place we'd rather be.

One issue we're now facing is the transition of care back to our regular team. Anna's been through a lot in the last month and we're not sure how to get everyone up to speed and on the same page. Also, if something does happen this week, we're not sure where we are supposed to turn. So we are asking the LORD for some clear direction on this very important issue.

Blessings to you all in the name of the Lord Jesus,
Richard

Sunday, April 9, 2006 7:40 AM CDT

Palm Sunday Morning

Anna is still n the hospital but continues to show a little bit of improvement each day. Yesterday she ate a little more than the day before, talked a little bit more, got up a little more, and looked a little better. We have made significant progress from 3 weeks ago but still have a ways to go.

If things continue as they have been, Anna should be home this week -- we can hardly wait to be reunited as a family again. I was reading this morning about Jesus healing the woman who had been "bound by Satan" with an infirmity for 18 years. That is a long time to wait for healing from the Lord. But we are confident that He is the only one who can bring complete and sustained healing, so we wait for Him.

We are praying for no fevers, strength and appetite, and that we could celebrate the Lord's resurrection together next week under the same roof (ours!).

His grace to you,
Richard

Friday, April 7, 2006 11:21 AM CDT

Day 21! It was 3 weeks ago this morning that we took Anna to the pediatrician with a "virus" -- it seems like it has been months since we've all been together. But Anna continues to improve. They took out the nasal feeding tube and a lot of her monitors yesterday so she has more freedom to move around. Also, her temperature didn't break 100 last night so that was REALLY good news and we hope for more of the same today. Assuming everything else stays the same, we have only one goal today -- EAT EAT EAT. She just needs to pork out. And peace for Anna. The docs have proscribed some anti-anxiety medication for Anna. We're a little reluctant to add any more medications to her already lengthy list, but if it will help her, we're willing to try it.

We're thankful to the Lord Jesus for how far He has brought us and are looking forward to all He has for Anna today and beyond.

Richard

Thursday, April 6, 2006 9:45 AM CDT

Day 20..

Marlo is back at the hospital today. Anna was fever-free until about 3:30 this morning when her temperature slowly started rising. It was closing in on 100 when I left for work. They started a new antibiotic last night to combat the infection -- they determined she has "c-diff," which is a bacterial infection you can get from being on other antibiotics that are essentially too effective and destroy bad and good bacteria in your GI tract. It appears to be treatable and she's not yet been on that antibiotic a full 24 hours yet, so we're hopeful this will be the last step before going home. But if there is another source of infection in addition to the c-diff we just need to figure out. We would ask specifically today that Anna's fever not return, that her appetite and thirst would increase, that her swelling would just go ahead and go away, and that all the news today would be good!

Thanks for all of you who are keeping out kids, bringing us food, praying for us, sending cards, dropping by, and treating us with such special care. The LORD's blessings to you all.

Confident of Future Grace,
Richard

Wednesday, April 5, 2006 9:56 AM CDT

Day 19...

Just a quick update -- Anna had a good night last night. They decided to focus on making her comfortable so they gave her a little blood pressure medicine and some tylenol about 11:00 and just let her sleep.

Initial review of the CT scan didn't show anything significant other than that there was more fluid in her belly -- but no indications that it is further bleeding.

There are some indications that this is a bacterial infection that is caused by being on antibiotics for too long combined with being immunosuppressed. Remedy? A 10 day cycle of different antibiotics...

We should have a lot of test results back today and hopefully have a clear picture of where to go next and when we can go home. Thanks again for all your prayers and support and we pray that the LORD would richly bless you for caring for Anna.

Richard

Tuesday, April 4, 2006 1:49 PM CDT

Well, it looks like whatever is causing the fever is not responding to antibiotics. Her fever came back and lasted longer. She was extremely uncomfortable last night with her fever, high BP and high heart rate. That combined with the nurse coming in NINE times, made for a sleepless night. They are going to do a CT scan at 4:30 to see if they can see any reason for the fever in her abdomen. They have been trying to avoid opening her up to drain the clots from two weeks ago, but they may be forced to.
I don't know how long this will go on.
Love, Marlo

Monday, April 3, 2006 8:55 PM CDT

Good news today -- Anna's GI tract is clear of any visible fungus. It looks pretty healthy overall, although they took some small tissue samples to test for any other viruses or infections. They started her on several different antibiotics and antifungal drugs today so hopefully these will knock out this fever that has plagued us for 4 nights now. All her other numbers look good and if not for the recurring fever, we would be going home. Tomorrow is day 18 of the hospital stay -- longer than the original transplant. I don't even want to count up our days in the hospital over the past 14 months.

We are asking the LORD to get rid of this fever once and for all and get us home!

Also, I think Anna's little spirit is just worn out -- she hasn't slept well (as you know, a hospital is no place to get any rest) and she lives in constant fear of what the next person coming into the room is going to do to her. We're asking the LORD to give her peace of mind and heart and just bear with us a little longer.

Waiting for His Grace,
Richard

Monday, April 3, 2006 12:41 AM CDT

Anna is having an endoscopy at 12:45 p.m. today to see whether there is any fungal infection in her GI tract. She has begun a course of antibiodics and antifungal medications. She also continues to have the recurring night fevers. Please pray that these issues would be resolved.
Grace,Richard

Sunday, April 2, 2006 8:44 PM CDT

Anna is still continuing to run a fever at night. This is the fourth night in a row. They will probably start her on antibiotics and antifungals tomorrow. Those meds are hard on the liver and kidneys which are just now recovering from the internal bleeding. They are also planning to do an endoscopy some time tomorrow so that they can see if she has a fungal infection in her GI tract. Those are tricky to treat in someone who is immunosupressed.
Please pray for Richard tonight as he cares for Anna. He is giving me a break and some time with the other kids. It will be a rough night with the fever (it causes her BP and heart rate to go up which sets off the alarms) and then they will draw blood for cultures early in the morning (from her port and from her arm). Anna is used to Mommy being there and taking care of her, so it will be hard on her too.
Pray that we would know what it means to have the Lord as our strength as we enter the third week of being in the hospital.
"Let us run with endurance the race set before us..."
Love, Marlo

Saturday, April 1, 2006 2:43 PM CST

Just a quick note. I am supposed to be out getting Anna's food order--a McDonald's cheeseburger, a taco from Bueno, and a blue slushy from Sonic. She moved back into the "small room" and it seems to have helped her appetite. She may just eat one bite of each of those things, but at least she is wanting to eat. We are going to have a family party tonight now that the kids can all come up. The doctors say that she could go either way (better or worse) and that she is still in a precarious position, but for this afternoon anyway things look good.
Love, Marlo
PS. She had another low fever last night and her oxygen levels fell a couple of times. Pray for an uneventful night.

Saturday, April 1, 2006 12:51 AM CST

Marlo will probably update later today but Anna's breathing is probably okay at this point. She did have the fever again last night. However, they decided to move her back to the pediatric floor anyway later today. Unfortunately, after yesterday's improvement, she seems to have regressed again today -- not wanting to eat, not wanting to get up, etc. We are puzzled and not sure of the next step.

Thanks --- Richard

Friday, March 31, 2006 7:45 PM CST

In addition to the O2 issue, the docs are also concerned about a recurring fever she's had the last couple of nights. It seems to go away during the day. If it STAYS AWAY tonight, then we'll probably be moved from the ICU to a regular room tomorrow (all else being equal). I think it would do Anna a world of good to have a change of scenery. We're really hoping and praying that her 02 and her temperature remain steady at night. We really appreciate your standing with us before the LORD. It does make a difference (despite this morning's article in the Oklahoman newspaper about the new "prayer" medical study -- interesting reading).

Grace upon grace,
Richard

Friday, March 31, 2006 5:52 PM CST

This is the second update today so please look at the journal history to see the one from earlier this afternoon.
Anna is having trouble with her oxygen level when she sleeps. She is supposed to keep it above 90, but it is dipping down into the 70's which sets off the alarms. It's just one more thing to figure out. Hopefully it will be resolved on it's own, but it will make for another long night.
Love, Marlo

Friday, March 31, 2006 3:58 PM CST

YAHOO!!!
Thank you so much for praying for "some improvement soon." Things didn't look good last night as Anna spiked a fever, but joy comes in the morning. This morning we could see definate improvement. She lost another two pounds since yesterday and she is moving around in her bed. She is also talking more and eating a little bit. AND her liver numbers went down again after staying the same for the last three days. She was SUPPOSED to have an endoscopy today but they canceled it because of her fever and her low platelets. The doctors were making arrangements to mediflight us to Delaware before thy came in this morning. When the doctor finally got there he was very pleased to see a new girl. Now they are talking about discharge in a couple of days IF she does not have any more fevers.
When we met with the doctor I told him that I had asked people to pray last night for some improvement. I want to make sure God receives the glory for any healing that takes place!
Love, Marlo

Thursday, March 30, 2006 6:40 PM CST

I have some verses that I am clinging to today, but I left my journal up at the hospital and I am at home for a little while.
It is very hard for me not to be discouraged by the lack of improvement. I know God's healing power is not limited by the length or severity of an illness, but the longer this goes on, the harder it is to stay hopeful. Luckily I have a wonderful husband who continues to encourage me to stand strong in what God's word says and not be overcome by the waves of my circumstances.
Anna is going to have an endoscopy done sometime tomorrow to see if they can find out why she is not eating and she continues to throw up. Hopefully she does not have a fungal infection down in her GI tract.
Pray that she will show some improvement soon.
Thank you for continuing to pray for us and care for us.
Love, marlo

Thursday, March 30, 2006 9:35 AM CST

Anna seems to be stable but is not showing much improvement in terms of eating and getting around. The doctors here are considering further testing but don't know whether it should be done here or whether we should go back to Delaware. We would rather stay here in terms of family but if we need to go to Delaware then we will.

We really need God to work in a big way today. We're confused and uncertain about what the next step is.

Richard

Tuesday, March 28, 2006 9:18 PM CST

Anna had a fairly uneventful day -- her blood pressure is a little high but her blood counts stayed the same. She isn't eating yet, which is of some concern but they are hopeful that she'll start again. Right now, she is just retaining LOTS of fluid in her body. She has gained about 10 pounds in the last week (which is one third of her former weight). This is due to the fact that her liver is not fully functioning (though it is working). They are trying to treat this and have told us right now that it is a cosmetic issue, meaning it should go away over time with no lingering effects. But she really just looks uncomfortable.

I think you already know how to pray. Thanks for being faithful. We are hoping for a good day tomorrow -- more eating, more getting up and around, less fluid retention.

Grace,
Richard

Tuesday, March 28, 2006 7:19 AM CST

For those of you who haven't checked the site since yesterday morning, Anna is back in PICU. There was concern that she might be bleeding internally again. However, after a late night, blood labs and an ultrasound this morning, it looks as though she is not bleeding. Thank you, Jesus! Thanks for your prayers. Richard or Marlo to update later - just wanted you to know the good news and praise the Lord for another rescue of our sweet girl. Praising Him, Shawna

Tuesday, March 28, 2006 0:09 AM CST

THANK YOU, JESUS! No surgery tonight! Anna's blood count has stabilized. If she is bleeding, it is a slow bleed. She will have an ultrasound and chest x-ray in the morning. If you are up, pray for good rest for all 3, Anna's blood pressure to stabilize and for no bleeds. Thank you for praying! Resting in His care, Shawna

Monday, March 27, 2006 10:03 PM CST

Anna's situation is of very high concern. She is back in the PICU. They have started giving her blood and will know around midnight if she is bleeding internally. If she is, they will take her to surgery tonight. When I hear, I will update. Thank you for your prayers. Trusting Him, Shawna

Monday, March 27, 2006 5:14 PM CST

Please be in prayer for Anna. The doctors are concerned that there is a possiblity she is bleeding internally again. She is back in Pedicatric ICU. They are giving her blood and watching her numbers. If she is bleeding, they will start all over with the ventilator, etc. and take her back to surgery. We will know more in the next few hours. This is very serious, her body is just beginning to heal. Please pray that she is not bleeding. Richard and Marlo are with Anna now and would like to spend a quiet evening together. I will update as soon as I hear something. On my knees, Shawna

Monday, March 27, 2006 1:01 PM CST

Anna continues to improve ever so slightly each day. Her foley catheter was removed yesterday which requires her to get up and go to the bathroom (which is good) and she is eating very small amounts of food and keeping it down. Her legs are terribly bruised and swollen so it is very hard and painful for her to walk or even stand up. We are going to try some physical therapy to keep her moving.

Overall the doctors continue to assure us that things are moving in the right direction, albeit slowly. Her biggest risk right now (and for the coming weeks) is infection. If she continues to improve we may get to bring her home this week. Please pray for her continued (and perhaps speedier) recovery and also that we could arrange the necessary followup care for her -- it's pretty complicated now with 3 different hospitals and care teams involved. We'd like to keep it as simple as possible and keep a good continuity of care at least until we're out of the woods on this. So in summary, the prayer needs today are:

1. Protection against infection (for the other siblings too)
2. Recovery of Anna's organs (especially the kidneys)
3. Regeneration of liver
4. Provision/coordination of followup care
5. Anna to regain her appetitite

We again affirm that the LORD is good, not because He does things that we think are good (from our limited human perspective) but because it is His nature and so we trust that even this trial will somehow turn out for our good and His glory.

Grace multiplied,
Richard

Saturday, March 25, 2006 9:22 PM CST

Just a quick note before I crawl into my own bed. Richard is at the hospital with Anna so that I can get some uninterrupted sleep at home.
Anna had her femoral line removed today so now she is left with the NG tube, foley catheter, and her infusaport. She was awake most of the day, but didn't want to get out of bed. Her abdomen is extremely swollen due to the internal bleeding last week. I'm sure she is very uncomfortable. So far she is continuing to need the tube feedings because she isn't taking anything by mouth.
Pray for her to be hungry and to be able to keep her food down.
Pray that she will be more mobile.
Pray that she will not get an infection from being in the hospital. I posted a sign on the door that reads, "CAUTION, paranoid and extremely tired mother inside. Please wash hands upon entering."
The doctors have said that it is just a matter of time as we wait for her to heal. Hopefully we will be home sometime this week.
Love, Marlo

Friday, March 24, 2006 10:45 AM CST

"Come and see what our God has done, what awesome miracles he does for his people!...Our lives are in his hands...You have tested us. O god; you have purified us like silver melted in a crucible..." (from Psalm 66)

Sorry for no update yesterday. No news just meant that we didn't get a chance to get to the computer. Anna continues to improve. She didn't have a fever at all yesterday and her breathing was MUCH better. She has a small fever today, but is more alert than she has been all week. We will be moving back to the room we started in a week ago today. A week in the ICU is enough and we are thrilled that the doctors think she is well enough to transfer to the "regular" floor. She is still hooked up to several things so she will probably start having those taken out--not fun, but necessary.
Today during my quiet time I just thanked God for the gift of another day. We thought Anna's last day was March 18. I am so thankful that we have her today--March 24. Nothing changed, but my perspective. O that we could see our lives from God's point of view.
Thanks to all of you who continue to walk with us through the fire and rejoice with us as we see the hand of God at work.
Love, Marlo

Wednesday, March 22, 2006 2:20 PM CST

The desire of the righteous ends only in good (Prov. 11:23).

Our hope is that this will end in good though admittedly today was a small step backward - this morning Anna developed a fever and is having some breathing problems. The doctors are not sure what the cause is though some type of infection is usually suspected. Also, Anna still has lots of fluid (blood) in her belly which creates problems breathing. We will definitely not be leaving the PICU today; hopefully, tomorrow but frankly, Anna is still very sick. She has certainly come a long way but the path home is still fraught with risks, including infection and other problems with her damaged but still functioning liver. Good news is that her liver numbers are continuing to drop though they won't be normal for a long time.

Here's a few specific prayer points:
1. Avoid/fend off/defeat any infections
2. Continued repair/restoration of her other body organs (kidneys, lungs, GI tract);
3. Regeneration of liver;
4. Avoid other complications with her liver (such as bile duct issues, clots, etc).

We're thankful for all the friends and family that have AGAIN come to our aid -- we owe so many debts that will be impossible to repay. We are waiting on the LORD to rescue Anna from yet another day of difficulty. We have to lean hard on His faithfulness -- despite the excellence of the team caring for Anna we know that ultimately healing comes from the LORD.

Tuesday, March 21, 2006 6:27 PM CST

Today was a good day. After a scare last night (we had a lot of difficult waking Anna up), all signs are good today. They removed the ventilator and she is breathing on her own. She has had a small amount of grape juice and can have soft foods whenever she is ready for them. Her organs appear to be recovering and the best news is that her liver (actuallly whatever good tissue remains in her liver) is working!

So we continue to ask the LORD for a strong recovery, good appetite and a fresh start on this liver (you may or may not know that the liver is the only major body organ that can regenerate), as well as protection from infection.

We really feel that the LORD brought her back from the very brink of death and are thankful for each additional day here on earth we have. We want to make the most of them, not just with her but with our whole family. Some if not most of our care team at the hospital are aware of the many prayers offered up for Anna and we are hopeful that the LORD will get all the credit He so richly deserves. She may possibly get to move to a regular room on the children's wing tomorrow or the next day. That would be nice but we sure like the attention and care we've received in the PICU.

Grace upon grace,
Richard

Monday, March 20, 2006 4:24 PM CST

We are thankful for another day. Anna continues to improve, but still remains in ICU hooked up to several machines. Her liver appears to be trying to do it's job. Her numbers continued to go down even without the plasma-phoresus (sp?)--a special machine to take out her blood and replace her plasma with fresh plasma--a procedure she had done yesterday, but didn't need today. They are weaning her off the ventilator and should remove that tube tomorrow. We are waiting for a neurologist to come examine her to see if we need to do another CT scan because of the bleed in her brain. (She was bleeding everywhere Saturday.) She appears to have no neurological problems, but the intensive care doctor just wanted a specialist to evaluate her. We continue to receive great care here and are very thankful for that.
Because Anna is more alert and because I untied her hands, one of us has to be with her at all times to make sure she doesn't pull out any of her tubes. Please understand if you come to visit that we may not be able to come out to see you. I will leave a book at the desk that you can sign.
Love, Marlo

Sunday, March 19, 2006 3:12 PM CST

I can't begin to gather my thoughts from the last few days. It seems our lives have become a medical docu-drama. I'm sure some people are "tuning in" to this website to read the latest "episode". For us it is very real. This latest trauma was BY FAR the worst we have experienced thus far. We thought we would be planning a funeral today, but instead God answered many prayers for a miracle. The team here has been great and worked VERY hard to find out what was causing the problem and fix it. The intervention radiologist told us that finding the source of the bleeding and then stopping it would be like hitting two home runs. Well as far as we are concerened he has won the World Series. He stopped the bleeding so now we are dealing with the after effects--a tummy full of blood, damage to other organs, and the necrosis of the liver. We chose not to get on the transplant list last night so that we could see what her body would do on it's own. (That was our decision and not what was recommended by the doctors.) We don't know how much of the liver was damaged and what she has left. We don't know whether she has enough liver to regenerate. But since God has already done one miracle, we know he can do another. The doctor today says that Anna's condition is "night and day" compared to how she was yesterday. She is by no means out of the woods. We still have a long way to go, but her vital signs are good and her condition is "guarded but stable".
Thank you to all of you who prayed for us yesterday and for those who came to visit. (The nurse who came out to give reports during the procedure said, "You all are like rabbits!" Every time she came out there were more and more people:) Anna is in PICU so her visitors are limited, but Richard and I will try to come out and visit with you if you come up.
Continue to pray that her liver function will improve and she will not need another transplant.
Pray for the other kids. I just returned home and now I'm not there again.
Praise God for the doctors and nurses here and their skilled care.
Love, Marlo

Saturday, March 18, 2006 8:16 PM CST

Anna is stable in the PICU at Baptist. It has been a difficult day, but God has made His presence known. Many friends and family where at the hospital in prayer and support and it meant alot to Richard and Marlo! Trusting Jesus is all they can do and God has given them unspeakable strength.

Today I read Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about its own. Sufficient for the day is its own trouble.

Trust Me one day at a time. Trust keeps you close to Me, responsive to My will. Trust is not a natural response, especially for those who have been deeply wounded. My Spirit within you is your resident Tutor, helping you in this supernatural endeavor. Yield to His gentle touch; be sensitive to His prompting.

Exert your will to trust Me in ALL circumstances. Don't let your need to understand distract you from My Presence. I will equip you to get through this day victoriously, as you live in deep dependence on Me. Tomorrow is busy worrying about itself, so don't get tangled up in its worry-webs. Trust Me one day at a time.

Pray for:
-Strength for Marlo and Richard.
-The kids, they have not seen them since Friday morning.
-Anna to rest comfortably, and for her body and Liver to heal itself quickly without another Transplant.

Unless something comes up, there will not be another update tonight. Michelle Holden

Saturday, March 18, 2006 3:28 PM CST

Anna is out of surgery. Doctors were able to locate the bleeding and stop it. Marlo and Richard are meeting with doctors to discuss if she is able to do a new transplant. There are still many issues that need to be resolved, but stopping the bleeding was the first step. After meeting with doctors we will give another update within the hour.

Saturday, March 18, 2006 1:01 PM CST

We are in Baptist PICU. Anna is in surgery right now because she is bleeding internally from her liver. They are trying to isolate where the bleeding is exactly coming from. They are injecting some dye and other stuff to try to find this out. If this does not work they will be taking her into the "big" operating room and physically do surgery on her to find out what is going on. She is in a critical state right now and we really need God's hand to intervene. Please be in prayer right now. Will update as more information becomes known. Things are moving fast right now so check back often.

Friday, March 17, 2006 2:49 PM CST

We are up at Baptist Hospital for now (we usually are at Children's but it's a long story). Anna is very sick, liver numbers through the roof. Possibilities are hepatitis, structural damage to the liver, simple dehydration, or just a virus. Doesn't appear to be a rejection issue. They're doing more bloodwork plus an ultrasound this afternoon to look for blockages, collapsed vessels, etc.

I hate to sound like a broken record but she still really needs your prayers. We keep thinking we're turning a corner but the new challenges and problems seem limitless. And yet, Our God has managed to meet and defeat everyone. All we can do is rest in that.

Grace,
Richard

Friday, March 17, 2006 10:14 AM CST

Please see last journal entry -- Anna is being admitted to the hospital this morning for iv fluids. Not sure what else will be going on but will try to update as we can.

Friday, March 17, 2006 9:30 AM CST

Well, so much for a normal couple of days. After Jacob was sick Wednesday and Thursday, we think Anna has picked up a vicious stomach bug (maybe the same one he had). She's been throwing up every 3-4 hours since yesterday afternoon. She hasn't slept more than about 15 minutes at a time and looks pale as a ghost. Anyway, she's at the pediatrician's office right now and we're hoping this will pass by later today.

The other kids are doing great and Jake and Audra have had a great week at sports camp.

Richard

Wednesday, March 15, 2006 9:22 AM CST

We are back home and things are wonderfully normal. Anna is enjoying her first bath in a week (her port was accessed so she couldn't get it wet.) She and Will have been playing/fighting all morning. At 7am she wanted to know where her grandmother was because last night Sittie had said, "I'll see you tomorrow." She had a blueberry muffin and her great grandmother's stuffed cabbage rolls for breakfast (I know that's not normal, but it is wonderful). Thanks to all of you who prayed for us this week. We will have labs again next Monday.
Love, Marlo

Monday, March 13, 2006 6:10 PM CST

We got a call at 4pm saying that Anna's labs were headed the right direction and that we could go home. They aren't going to do anything but watch her numbers and we can do that in OKC. So, we will be leaving here tomorrow afternoon. Pray for an uneventful trip and for Anna's liver to continue to recover.
Love, Marlo

Monday, March 13, 2006 1:19 PM CST

We had labs this morning and are waiting for the results. We enjoyed seeing some of our friends from this summer when we were in the lab. I talked to two other families who had biopsies last week so I guess it's not unusual.
Anna and I are ready to come home. She needs someone else to fight with besides me. Hopefully it won't be too much longer.
Thanks for the cards and packages. We had fun opening them today.
Love, Marlo

Saturday, March 11, 2006 6:32 PM CST

"We were crushed and completely overwhelmed, and we thought we would never live through it. In fact we expected to die. But as a result, we learned not to rely on ourselves, but on God who can raise the dead. He will rescue us because you are helping by praying for us. As a result, many will give thanks to God because so many people's prayers for our safety have been answered." (2 Cor 1:8,9,11)

What a gamut of emotions we have been through the last few weeks. We are learning to live with the uncertainty of the future. We continue our lessons on trust as we keep on the path set before us.
Anna is feeling pretty good although she is very weak and doesn't want to walk anywhere. Tonight some volunteers brought her favorites for dinner--tacos and broccoli (strange combination, but it worked for us.) She is pretty much hungry all of the time. She usually wakes up at 2am wanting chex mix.
I'm hoping that these two days will allow her body to rest and recover. We will find out Monday or Tuesday when the doctors think it is safe for us to go home.
Thanks for continuing to help by praying for us.
Love, Marlo

Friday, March 10, 2006 8:44 PM CST

Marlo and Anna had a pretty good day today -- Anna is hungry and restless because of the steroids but the good thing is that she is gaining weight. She definitely needs that. But pray that she would get some sleep so Marlo could sleep too!

They met a family from near Wichita, KS tonight who just got back from Disney World. It was the first family we've met from our neck of these American woods.

Anyway, we're asking the LORD for extraordinarily good labs on Monday. The tranplant team meets on Tuesday to decide the next step for Anna, which hopefully is a trip back to OKC. But her numbers were awfully high! The main thing is for them to keep coming down but they've got a looooong way to go.

Marlo had written a great update but it unfortunately got lost in the computer somewhere. She'll write again sometime when she gets the chance. But thanks for the gifts and cards she's received. We are truly blessed and favored by so many.

Grace upon grace,
Richard

Thursday, March 9, 2006 9:39 PM CST

Anna was discharged from the hospital today so she and Marlo are back at the Ronald McDonald House for the next few days. I don't think they have labs again until Monday when they'll decide when they might be coming home. Anna has slept a lot today -- must be worn out from being in the hospital. As anyone who's been in a hospital knows, it is no place to get any rest.

I suspect their biggest problem for the next few days will be boredom, just hanging out, reading books, and watching movies. With all the excitement, I think maybe boredom is a good thing...I just wish I could load the kids up in the car and go spend the weekend with them. We knew the distance was an issue when we chose them as our transplant center and it should come as no surprise to us that Delaware hasn't moved any closer to Oklahoma in the last 8 months. Still, we miss them a lot and want them home. But our first priority is Anna's health and safety.

So pray that Anna will quickly conquer this virus or reaction or whatever it is and that her labs on Monday would be exceedingly better than we could ever ask or hope (to paraphrase Paul, the apostle, in his letter to the Ephesian believers).

It's all grace --
Richard

Wednesday, March 8, 2006 12:34 AM CST

GOOD NEWS!!!

Our good and gracious God has been incredibly good and gracious to us today. Anna's CT scan did not show any visible tumor and the biopsy was not indicative of a significant rejection episode. They are treating this as a viral infection, which is serious but the best of the options presented to us. Anna will stay in the hospital on IV steroids for the rest of this week while they try to identify the virus and then she will be discharged to the Ronald McDonald House for about a week of observation.

I'm going to paste in a lengthy passage today from Lamenations 3 in the "Message" (which is not a translation but a very loose paraphrase)-- it's long but really good and is where my heart is right now. I strongly suggest you read the first part of the chapter to get a sense of what Jeremiah had been through prior to making this declaration --

"GOD's loyal love couldn't have run out, his merciful love couldn't have dried up. They're created new every morning. How great your faithfulness! I'm sticking with GOD (I say it over and over). He's all I've got left. GOD proves to be good to the man who passionately waits,to the woman who diligently seeks. It's a good thing to quietly hope, quietly hope for help from GOD. It's a good thing when you're young to stick it out through the hard times. When life is heavy and hard to take, go off by yourself. Enter the silence. Bow in prayer. Don't ask questions: Wait for hope to appear. Don't run from trouble. Take it full-face. The "worst" is never the worst. Why? Because the Master won't ever walk out and fail to return. If he works severely, he also works tenderly. His stockpiles of loyal love are immense."

Grace,
Richard

PS As you're thanking God for today's news, you might also want to lift up our friends, Jim and Stacy, who as I write are expecting the arrival of their new baby sometime today.

Tuesday, March 7, 2006 5:04 PM CST

It's been a long day, but we are now in a room. We had the biopsy and a CT scan this afternoon. We will know more tomorrow. Anna is grouchy, but I would be too if I hadn't eaten all day and had so much done to me. She is upstairs drinking Coke and eating jello under the loving care of Amy--a nurse we had this summer. I'm on my way to the cafeteria because, but took a detour to the RM Room in the hospital where they have computers. Thank you for your encouraging notes.
Love, Marlo

Monday, March 6, 2006 8:55 PM CST

Anna and Marlo had a good day overall. Anna was up playing most of the day and they both took a long nap this aftenoon. Her labs today were much, much worse that we expected -- we just don't know how her liver numbers can be as bad as they are, yet she seems to feel as good as she's felt since before the transplant. Anyway, the biospy is scheduled for tomorrow at 1:00 pm but since her numbers were so high today, they are going to admit her to the hospital and begin treating her as if a rejection was going on. They'll reevaluate after the biopsy. So we're thankful for a day of rest today and hoping for some better news later this week.

Please pray for Marlo's rest, peace, and trust in the Lord and for Anna to rest well in the hospital and respond well to the treatment. Also please pray for the doctors to have wisdom in figuring out what is going on with Anna.

Grace,
Richard

Monday, March 6, 2006 0:52 AM CST

After a lengthy delay due to a snowstorm moving through Chicago, Marlo and Anna arrived at the Ronald McDonald House in Delaware at 2:00 a.m. Delaware time. Anna wanted a bowl of cereal. They are going to bed and will sleep in a little tomorrow before checking in with the team in the morning. Special thanks to the night manager at RMH who stayed up extra late to let Marlo and Anna in the door!

I'm sure Marlo will write a little more tomorrow. Overall, they're tired but okay. Anna seems to have handled the day pretty well. The plan is to do labs tomorrow and then maybe a biospy on Tuesday as necessary.

Richard

Sunday, March 5, 2006 2:03 PM CST

Please read Marlo's prior entry if you haven't already. But I wanted to let you know that their flight has been delayed b/c of bad weather in Chicago. So please pray that they would make their connection and arrive safely in Delaware today. Thanks.

Richard

Saturday, March 4, 2006 9:05 PM CST

"Don't be impatient for the Lord to act. Travel steadily along his path."
(Psalm 37:34)

We continue to travel the path set before us. It really is not such a terrible journey as some of you must imagine. We have had a great weekend. We took all the kids to Joe's Crab Shack last night. (Which by the way, always sounds like more fun than it actually is.) Today Anna went to a birthday party and rode a pony and I took the other kids to the zoo. We are enjoying the time together. It is made so much sweeter when you don't take it for granted.
Anna is in such a good mood that I can't understand how she could be as sick as her labwork says she is. She took it well yesterday when I told her where we were going. Her only question was, "Will I have to take those shots?!" When I told her I didn't think so, she felt better. It helped that I took her to Target right afterwards to pick out some goodies for the airplane ride.
Please pray for the other kids. Audra is having a hard time saying goodbye. She and Will have scarves with my perfume on them. Will asked me what he would do if the perfume smell ran out. I said, "Well, I guess it will be time for me to come home then." Pray for Richard as he tries to juggle work and home by himself.
Love, Marlo

PS.
Thanks Kirkland teachers for the goodie bags you sent us. They will be used!
Thanks Uncle Howard for your gift. We hope we will be able to come see you soon.
Abby Nutter, I'm sorry I didn't return your call. Anna hid the phone card.
Thanks Anderson Family for the fun box you sent. What an unexpected surprise.

It's fun to get mail at the Ronald McDonald house. Here's the address in case anyone would like to send a note.
1901 Rockland Rd.
Wilmington, DE 19803

Friday, March 3, 2006 12:19 AM CST

Anna did NOT have the biospy done this morning. After we had arrived and Anna was prepped and ready to go, our local GI and the Delaware team determined that it would be more efficient to have the entire thing done in Delaware on Monday morning. So we had some breakfast in the cafeteria and went on our way.

Marlo and Anna are headed to Delaware on Sunday morning for an unknown period of time. We're planning for 2 weeks but it could be shorter or longer depending on what happens. Anna is acting the best I've seen since the transplant last June but her labs are the worst they've been. Despite how she looks, Anna is at as critical stage of recovery as she's ever been. Let me give you some very specific things to pray about:
1. Her liver numbers are steadily going up, leading to speculation that her body is rejecting the liver. This is serious but, if they catch it time, reversible.
2. Her AFP is 55. There are a couple theories on what is causing this but given her history it could mean that the cancer is growing again. Normal is less than 10 and hers has been trending steadily up for a while now.
3. She still has a fungal infection in her throat. Some improvement maybe but still a problem.
4. She is testing positive for Epstein-Barr virus (EBV). This is a fairly common virus (it can cause mono) that most people are exposed to at one time or another in their life. You may not even know you have it. But like all viruses it can be serious for transplant kids. The usual remedy is to reduce the anti-rejection drugs to allow the body to fight the virus. BUT if Anna is having a rejection episode, you can see that this is a very delicate balancing act since we would usually not want to decrease her anti-rejection drugs if her body is rejecting the liver.
5. Safe and uneventful travel to Delaware for Marlo and Anna (good weather, no delays, etc.). It's always hard to travel with a 3 year old, much less by yourself.
6. Wisdom for our Delaware team -- Dr.Adela Casas, Pam, Louise, Jerome, and lots of others that will be looking after Anna this week. We ask for insight, good judgment, and God's blessing on them both professionally and personally. We're thankful for their experience, knowledge, and commitment to Anna's care.

Anyway, I give you these details for one purpose -- so that if our God, who hears each and every one of our prayers, should choose in His good grace and compassion to answer them affirmatively, then He gets all the glory. John Piper, a favorite author/pastor, has said that God heals through both miracles and medicine. We probably need a little of both. But we ask for His glory -- Jesus said that He would do whatever His disciples asked in His name, "so that the Son may bring glory to the Father..." (Jn 14:13). We should ask for nothing less.

One last thing -- our email is down so Marlo may not respond until I get it fixed, which will hopefully be soon.

Grace,
Richard

Thursday, March 2, 2006 3:30 PM CST

Well, it was another crazy day at the hospital. We didn't have to spend the night--yea! But we didn't get the biopsy done either. We have to go back at 8:30 in the morning. (It's a long story and doesn't make any sense.) Pray that they will get a good sample from her liver tomorrow. She had an ultrasound today and they put an X on the spot where the doctor is supposed to insert the needle. Anna was crying and wiggling the whole time so I hope the X "marks the spot." We will fly out Sunday morning and I will be relieved to get there. If anyone can help Anna this team can. Her AFP is up to 55 (should be below 10) so we don't know if the cancer is back or if it is caused by liver breakdown. There are a lot of unknowns, but we have learned to trust in the unseen and not in the seen.
Thanks to those of you who searched all over the hospital for us today. It takes a lot of effort to visit someone at Children's and I appreciate it.
Love, Marlo

Thursday, March 2, 2006 8:13 AM CST

We are getting ready to head to the hospital for the biopsy. We have to report at 9:30, but the biopsy isn't until 3pm. There is some sort of blood test they have to do before the biopsy, then we have to wait 4 hours after the procedure for blood tests again. They usually have patients spend the night. Pray that we will be able to come home tonight. Because of the timing of everything today, we changed our plane tickets to Sunday.
This is all very confusing because Anna feels so good. Last night she said, "Mom, I got my smile back!" Pray that she will continue to feel good.
Love, Marlo

Wednesday, March 1, 2006 12:21 AM CST

Crazy day so far. I'm actually writing this while I am on hold with the GI's office. I am trying to find out what time her biopsy is tomorrow. I heard through the nurse in DE that the doctor here said he could do it tomorrow. We have tickets for Anna and I to fly to DE on Friday. If she is rejecting the liver, or if her problems are caused by the EBV virus, they would like to have her there to monitor the situation and get her back to where she should be. They said to be prepared to stay for a couple of weeks. As you can imagine I am trying to do 10 things at once to get ready to go. The kids will be in school next week and then have spring break so my main concern is to make sure they are taken care of. This time it's not so scary to go to Delaware since there are people there I know and if my family can get by without me for 2 months, they can do it for two weeks. Pray that they will have a fun time without me.
Love, Marlo

Tuesday, February 28, 2006 8:38 PM CST

"Through each day the Lord pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life." (Ps 42:8)

I wrote in my journal a few days ago, "Lord help me to trust you during the hard times and praise you during the good." Today has been both so I am trusting AND praising. Anna had a GREAT day. We had labs this morning and she was very sociable and cooperative (not always the case believe it or not). After we picked up Will we went to the zoo and stayed until Mom was tired. After a brief nap in the car, Anna and Will played outside for the rest of the afternoon. She ate 3 helpings of everything at dinner. All good, right? Well, around 5pm I got a phone call from Delaware. They had received a fax of today's labs and they weren't good. Anna's liver numbers keep going up so they are trying to arrange a biopsy for tomorrow. I have no idea how or who will be able to do a biopsy here on such short notice. We are tempted to hop on a plane to let our transplant team do it. Please pray that we will not make any hasty decisions, but will wait for God to work out the details.
So you see why today was both good and bad. This whole year has been a lesson on trust. He has brought us through SO MUCH. We can get through whatever tomorrow brings too.
Love, Marlo

Sunday, February 26, 2006 7:00 PM CST

We have had a good weekend. Anna seems to be hungry all the time. By 10pm I have to say no more until breakfast! She still weighs 27.5lbs so I am expecting a growth spurt soon.
We found a great article last week. If you are reading this and you have cancer or someone you love has cancer please check out John Piper's article, "Don't Waste Your Cancer." It really helped change our view about what we have been through/are going through.
http://www.desiringgod.org/library/fresh_words/2006/021506.html
(You can copy the address and then paste it in your browser.)
Love, Marlo

Friday, February 24, 2006 5:46 PM CST

We have a BIG praise today. Anna learned to swallow pills. She will no longer have to struggle to drink her orange juice coctail each morning. Now she will have to swallow four pills-- and she can do it! She is very proud of herself.
Rejoice with us!
Marlo

Thursday, February 23, 2006 3:51 PM CST

"I waited patiently for the Lord to help me,
and he turned to me and heard my cry.
He lifted me out of the pit of despair,
out of the mud and the mire.
He set my feet on solid ground
and steadied me as I walked along.
He has given me a new song to sing,
a hymn of praise to our God.
Many will see what he has done and be astounded.
They will put their trust in the Lord.
Oh, the joys of those who trust the Lord,
who have no confidence in the proud,
or in those who worship idols.
O Lord my God, you have done many miracles for us.
Your plans for us are too numerous to list.
If I tried to recite all your wonderful deeds,
I would never come to the end of them...
I have told all your people about your justice.
I have not been afraid to speak out,
as you, O Lord, well know.
I have not kept this good news hidden in my heart;
I have talked about your faithfulness and saving power.
I have told everyone in the great assembly
of your unfailing love and faithfulness."
(Psalm 40:1-5,9-10)

Wednesday, February 22, 2006 6:44 PM CST

Praise God! I would have a verse to start my update, but my journal and my Bible are still packed. I thought I would be spending tonight on a couch in the ICU waiting room, but Anna and I will be home in our own beds. The surgeon thinks Anna's problem is a fungal infection and not a tumor. He said it looks completely different from what he saw Friday. When he looked Friday he couldn't even see her vocal cords because they were covered by some sort of swelling/mass. Today that was gone. There was still something in her esophagus so he biopsied that, but he said that if it was tumor it would have gotten bigger--not smaller. He asked if I had done anything different with her since Friday. I said that was when I sent out the email for people to pray that the swelling would go down. I am so thankful that we didn't go to surgery on Saturday. I'm even thankful that we didn't go yesterday because she had another day to improve. We are starting her on some anti-fungal meds tonight and will continue to monitor the situation.
Thank you to those of you who came to sit with us today while we waited to go to surgery. Thank you to Lydia for lunch yesterday. Thanks for those of you who sent books. Thanks to my sister for coming down and staying with the other kids. Thanks to my mom who flew in from Arizona today. Thanks to the Salamy's for being there for us day in and day out. Finally, thanks to all of you who prayed for our daughter. Our journey began one year ago today when we first entered the hospital for tests. What a different day this turned out to be. Praise God!
Love, Marlo

Tuesday, February 21, 2006 12:02 AM CST

QUICK UPDATE: The surgery/biopsy has been MOVED to TOMORROW, February 22 at 1;30 p.m. The reason is just convenience of scheduling, not any medical developments. Plus our surgeon has been battling a cold the last few days and doesn't feel well. Anna will come home this afternoon and then we'll just check in back at Children's tomorrow at noon as an outpatient. So please pray that our surgeon would be in good form tomorrow and also still continue to pray that Anna would not need a tracheotomy.

Richard

Monday, February 20, 2006 7:09 PM CST

We are here at the hospital. We had the CT scan today at 1pm. No one has told us any results yet. We are having a little trouble trying to receive care under two disciplines (oncology and ORL). When you add in the pediatrician, GI, and transplant team it is a big mess.
Anna has been happy watching videos and reading books. We will continue with more of the same until tomorrow afternoon. Her surgery is scheduled for 5pm. Please continue to pray that the swelling will go down and they won't need to do a tracheotomy. We don't know when we will get to go home. It depends on what they do tomorrow and what they find from the biopsy.
Love, Marlo

Sunday, February 19, 2006 11:46 AM CST

"Be still in the presence of the Lord, and wait patiently for him to act." (Psalm 37:7)

We have made it through two nights and have two more to go. Anna seems to be sleeping soundly. We continue to reposition her when she gets in a position that makes it more difficult to breathe. (I say "we", but mostly it's Richard. He is the one who is sleeping with her because her noise keeps me up all night.)
I was so thankful that we weren't in the hospital yesterday. Anna felt good and she went outside and played in the snow with her daddy and brother. Later she helped me make cookies. It was a good day for our family.
I still haven't told her what is going to happen so pray for the right words and the right time to do that.
You can join her latest prayer, "Lord, make me better so that I can go to the zoo and ride the merry-go-round." Hopefully when the weather warms up she will be good to go.
Thank you for those of you who prayed that God would reveal what was hidden. Although I wish we had seen an ENT earlier, I'm glad we didn't wait longer.
If anyone would like to visit us in the hospital and you want to bring something, please bring books. Anna can sit for hours listening to someone read to her. Right now her favorites are Arthur and DW, Little Critter, Curious George, and Clifford. They don't have to be new.
Thank you.
Love, Marlo

Friday, February 17, 2006 9:11 PM CST

"everything he does is worthy of our trust..." (Psalm 33:4)

"Lord, thank you that this bad day is over." That was Anna's prayer at dinner. She has been happy tonight--playing games and eating pizza. She doesn't know what's coming.
We went to see an ENT today about Anna's breathing. (He was nice enough to see us without an appointment.) He put a scope through her nose into her throat and saw "something." He said I needed to take her to see a pediatric otolaryngologist--today. I met Richard there at 1pm and we waited until 4:45pm to see the doctor. (He was in surgery.) He repeated the scope down Anna's nose and said the "something" could be, a)irritation from reflux--if so it's the worst he's ever seen, b) inflammation from infection--but he didn't think an infection would linger this long, c) tumor--a VERY rare place to have a tumor.
He wants to do surgery to biopsy the tissue and to try to open up her airway. Our choices were tomorrow morning or Tuesday. We chose Tuesday. We will be admitted Monday morning so that they can do a CT scan of her throat. On Tuesday they will fit us in between other surgeries or they will cancel someone else's surgery.
*Pray that the swelling in Anna's throat will go down and that she will be able to breathe easier so that we won't have to rush to surgery before Tuesday. Nights are especially difficult.
*Pray that she will not need a tracheotomy. The doctor said there is a good chance that he will need to do one. It would be temporary, but she would have to be in ICU for 5-7 days (for it to heal and for me to learn how to care for it).
*Praise--that we were able to see two busy doctors today. Another ENT we called couldn't see us until Feb. 28.
*Praise--for my sister and nephew coming down Monday to help with the other kids. My mom and dad are in Arizona and will be coming a few days later.
Thank you for standing in the gap for us once again. We had a similar day one year ago when all of this started.
Love, Marlo

Tuesday, February 14, 2006 9:11 AM CST

"...unfailing love surrounds those who trust the Lord..."
(Ps. 32:10)

Happy Valentines Day!
I remember Anna being sick a year ago today. She is a bit better today than she was then. We are still dealing with some sort of respiratory problem. I actually videotaped her while she was sleeping and took the tape to the doctor yesterday. We dc'd one of her meds and are watching to see if it helps. Her tummy still hurts, but she has been able to play the last few days. She is looking forward to going to Will's valentine party at school this morning. I can remember taking her to Jacob's party last year and she asked to leave because she didn't feel well.
I hope your day is filled with unfailing love.
Marlo

Saturday, February 11, 2006 7:44 AM CST

"The Lord is my strength...I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving." (Ps. 28:7)

We have had a couple of better days this week. Anna is eating more and crying less. She has shown interest in things besides watching "Tarzan 2" and "Tom and Jerry". She has a strong desire to go to Jason's deli, which she will get to do during her time with Sittie and Pop today.
The rest of us are having a basketball weekend. Richard and I went to the Hornets game last night as we celebrated Valentines Day a few days early. Today we have Jacob's ball game and then it's off to Norman with the boys to watch Baylor play OU. We are so thankful to be able to do all those things. (A big thanks to Richard's friends at work who gave us tickets!)
Love, Marlo

Wednesday, February 8, 2006 1:38 PM CST

"I was sick and you cared for me..." (Matt. 25:36)

That was my verse for today. When I have read that passage before I have usually focused on inviting the stranger in, feeding the hungry, or providing clothing to those who need it. I can pat myself on the back and think I'm doing pretty good on those things. But today I saw that I am to care for the sick and visit those in prison. Hmmm. Is 3 out of 5 good enough? Jesus says if we do those things for "the least of these" we are doing it to him! Yesterday I was NOT a very good caretaker. I had an "angry" day and like a fool, I gave full vent to it (Pr.29:11). I am confessing so that you will know that I am not a supermom. People say to me, "I don't know how you do it." Well, some days I don't do it very well. Each day is a struggle to trust God or to demand my own way. Today I determined to care for the sick in my household as I would for Jesus. (Would I yell at Jesus to take his medicine? I don't think so.)
Today I am thankful for cheese Doritos--something new that Anna has decided she likes and they have phosphorous in them! I am thankful that so far the CT scan looks negative (the radiologist and surgeon in DE are looking at it again today.) I'm thankful that Anna's AFP went down to 18 from 21. I'm thankful for the teacher who brought Jacob home when he started feeling sick at school today. I'm thankful that this stomach bug has almost run it's course in our family and that it's a short illness. I'm thankful for Myrtle who prays for us and checks on us (and all the rest of you who do too.)
Love, Marlo

Sunday, February 5, 2006 9:11 AM CST

Happy Birthday Papa!

No answers yet, but it looks like Anna's current condition is not caused by cancer or liver failure so that's good. I'm treating it as a milk allergy (possibly brought on by all the meds she has taken this year). I'm trying to eliminate milk to see if it makes a difference. This is VERY hard to do since she has been living on milk, yogurt, and cheese for the past few weeks. She threw a sippie cup of soy milk across the room when I tried that. If you health eating people have any suggestions on what to feed her please let me know.
Friday Will was home sick and today it looks like Jacob and Audra have got it (Will's better today). I guess we will have a very small Super Bowl party tonight!
Love, Marlo

Thursday, February 2, 2006 3:30 PM CST

Thanks to those of you who prayed for Anna this morning. She didn't drink as much of the contrast as they would have liked, but hopefully they were able to get a good picture with what I was able to get down her. She did great during the actual scan. They gave her 1mg of morphine to "knock the edge off", but she was awake the whole time. (I asked nurse Elsie if she would give me a shot of versed--it gives you amnesia, but she wouldn't go for it.) After the test Anna said she was "starving". She chose Jason's deli because she wanted macaroni & cheese and strawberries. We were happy to oblige. After lunch we went to get Will at a friend's house and she wanted to stay and play for a while. Today was the longest she's been up in a month.
Last night when I told her what we were going to be doing today she said, "If there is nothing wrong with me can we celebrate?" I asked her how she wanted to celebrate and she said "You know, have pizza and play games." I told her we would celebrate no matter what.
Love, Marlo

Thursday, February 2, 2006 8:02 AM CST

We have a CT scan today at 11am. Please pray that what is hidden will be revealed. If there is something we can fix (narrowed duct or some other structural problem) I want them to find it. Pray that Anna will be able to drink the contrast (6 oz every 15 minutes) before the scan. The more she drinks the better the picture. Pray that she will be able to lay still with minimal anesthesia. It's much easier on everyone if they don't put her all the way to sleep.
Tomorrow we will see the pediatric GI. Pray that God would give him insight into the problem.
THANK YOU!
Marlo

Wednesday, February 1, 2006 8:06 AM CST

Yesterday a friend called and offered us the use of their time-share so that we could take a vacation as a family. I said that we would love to, then I cried out, "but we can't say yes because we have no hope of Anna feeling better." I have found that hope is a precious thing. You can endure much suffering if you have hope that things will get better. I think what must make hell so awful is the lack of hope for anything better. I'm sure many people live without hope, but I search for it. I tend to base my hope for the future on the way Anna feels, or on test results, or on doctors. This morning I was reading Lamentations 3. Here are some highlights...
"He has given me a cup of deep sorrow to drink...Peace has been stripped away...The thought of my suffering...is bitter beyond words. I will never forget this awful time..."

Sounds hopeless doesn't it? It describes some of my days this month (and some of yours too I'm sure.) But there is HOPE. And it's not in a change of circumstances. Look at verse 21,
"YET I still dare to HOPE when I remember this: The unfailing love of the Lord never ends! By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, 'The Lord is my inheritance; therefore, I will HOPE in him!'
So for today, I will try not to base my hopes on my circumstances, but on the one who is the same yesterday, today and forever. And who knows, maybe we will get to take that vacation!
Love, Marlo

Saturday, January 28, 2006 9:27 PM CST

My mother is in Arizona waiting for me to give an update so here goes...
Anna is about the same. Her liver number went up a bit and we don't have an AFP yet. She had a couple of good hours on Wednesday. We took her to church and she ate dinner with the kids and then went to choir. Since then, she has been back on the couch. We saw a new doctor Friday. I tried to fill her in on the last four weeks. She thought it sounded like something involving her pancreas. There's nothing we can do about it on the weekend so we will wait until Monday to see what they want to do.
The other kids and I had fun Friday night at the school soc hop. They had a silent auction to benefit cancer research so we came away with several items.
Today Jacob and Audra had a basketball game. Jacob scored 3 baskets and Audra told me she cheered her loudest.
Pray that God will reveal that which is concealed and will help someone identify the source of Anna's problem so that we can fix it.
Love, Marlo
PS. Happy Birthday Sittie!

Tuesday, January 24, 2006 9:21 AM CST

"his arms were strengthened by the Mighty One...the Shepherd, the Rock of Israel..."
(Gen. 49:24)

Lord strengthen my arms for the task today. That is my prayer as we face another day of the same mysterious ailment. Anna's liver numbers and AFP were up yesterday so we will do another set of labs in a couple of days. The rise could be caused by going off the Prograf or could indicate rejection (or a myriad of other reasons), which would require a biopsy for more information. Each day it is so disappointing when she wakes up the same. At least she is eating more. Just now when I asked what she wanted from the store she said, "caramel kisses, watermelon, and yogurt drinks...those three things." She's a girl who knows what she wants!
I had a great time yesterday with my college roommates who drove up from Dallas to have lunch with me. When you know someone who is going through a difficult time, your presence can be such a blessing. Their trip reminded my of an African story about a man who walked for days to see a missionary (I can't remember the occasion). When the missionary told him that he shouldn't have come because it was too far. The man said, "Oh, the journey is part of the gift." The drive from Dallas was Debra and Carol's gift to me and I am so thankful.

Friday, January 20, 2006 9:27 AM CST

"I know the Lord is always with me. I will not be shaken for he is right beside me." (Psalm 16:8)

I was reminded again yesterday about how God knows EVERYTHING that is going on. Even though we may only spend a few minutes with him in the morning, he is ALWAYS with us. (Don't ask me how he is with everyone at the same time. He's God and I'm not.)
Yesterday Anna was having trouble breathing. I called the pediatrician and she said to bring her in at 10:45 (it was 10:15). I called Richard and he was going to have to leave work to pick up Will at school. Right after I hung up with Richard, the phone rang. It was a friend asking if there was anything she could do to help. I asked her if she could pick up Will and take care of him during the doctor's appointment. I was able to get Anna to her appointment and Will got to go to the park and Braums. Lucky him!
Anna has the croup and is now on steroids and breathing treatments in addition to everything else. (Richard thinks she should get a "free pass" from normal childhood illesses, but no such luck.) Actually I think the steroids may help boost her energy and appetite so it's a good thing. She actually came to the table and had a piece of pizza last night at dinner--yea!!
We are looking forward to a good weekend.
Love, Marlo

Thursday, January 19, 2006 9:36 AM CST

We stopped Anna's prograf two days ago. She has stopped going to the bathroom all the time, but she still won't eat. She will drink milk, but that's about it. Pray that her appetite will return. Pray that she will be able to fight off the congestion we can hear when she breathes. We wake up every morning hoping that today will be the day she "turns the corner" and starts getting stronger. Pray that we will be able to face each day with joy no matter what it brings.
"Real trust in God is above circumstances and appearances." (G. Mueller)
Love, Marlo

Tuesday, January 17, 2006 1:30 PM CST

We are very hopeful that we have found the problem. One of Anna's antirejection drugs can cause insulin resistance. It looks like this is what is happening with Anna. Because of the isulin rejection, her cells are unable to process the glucose in her blood (thus the spillover in her urine). When your body can't use glucose for energy, it starts to use fat (thus the ketones in her urine and the weight loss). Anna has NO fat to use. She even has wrinkles on her bottom! This could explain why she is so tired and her lack of appetite. We are stopping one med (prograf) and will increase her other antirejection med (rapamune) to see if the problem will correct itself. Pray that she will not have to receive insulin.
Love, Marlo

Sunday, January 15, 2006 10:17 AM CST

We are still struggling with Anna's illness. We were at the ER yesterday getting labs done and getting IV fluids. She was getting dehydrated and I didn't think she could wait until Tuesday when the clinic opens back up. (You should never get sick on a three day weekend.) Everything looked pretty good except for her glucose levels. No one can explain why she is not eating. We have an appointment with the GI on Tuesday. If this is a virus, pray that it will run it's course. If it is a medication issue, pray that we will find the cause.
Love, Marlo

Wednesday, January 11, 2006 6:32 AM CST

"If the trials of many years were gathered into one, they would overwhelm us; therefore, in pity to our little strength, He sends first one, and then another, then removes both, and lays on a third, heavier, perhaps, than either; but all is so wisely measured to our strength that the bruised reed is never broken. We do not enough look at our trials in this continuous and successive view. Each one is sent to teach us something, and altogether they have a lesson which is beyond the power of any to teach alone." H. E. Manning

I read that quote this week and wanted to pass it on. Will has strep throat and is on antobiotics. Anna is not eating again so she is tired and grouchy (which tends to make me tired and grouchy too!) We are all tired of this trial, but trust that God is faithful and will give us the strength for another day. He promises that his grace is sufficient.
Love, Marlo

Friday, January 6, 2006 12:29 AM CST

We are so thankful that everyone stayed healthy over the holidays. Anna is now complaining that her tummy hurts and her throat hurts. The throat only seems to bother her when she is drinking her phosphorous or eating anything acidic. (Does anyone out there know what that is about?) Another strange thing is that she thinks she is going to throw up, but only when she is crying--weird. Her liver numbers went down last week so we put off doing a biopsy. This week they didn't go down so we may have to have one after all. Did I mention that I was thankful for a healthy/happy holiday?
Love, Marlo

Monday, January 2, 2006 7:36 AM CST

Happy 2006!!!!
We were so glad to say goodbye to 2005. We celebrated in a big way Saturday. We started out at Incredible Pizza at 10:30am. It's a little early for pizza, but we were able to have the game room to ourselves for 30 minutes before they officially opened. I was still following Anna around and cleaning everything before she touched it. The highlight was when we all got to ride the go-carts together. Congratulations to Audra who came in first place!
On Saturday night we celebrated with friends and rang in the New Year at 9:30. The kids were still going strong, but some of the parents were getting tired.
Yesterday we spent the day at Sittie and Pop's. So you see we had a full weekend. Anna has had lots of energy. We hope that she doesn't catch anything from being out and about so much, but she had a lot of fun and it was great to be able to do things all together as a family.
As I finished up my yearly Bible Saturday, I read Malachi 3:6--"I am the Lord, and I do not change." No matter what does or doesn't happen this year. No matter how my life may change from one day to the next. God does not change--from day to day, or year to year. He is the same yesterday, today, and forever.
Love, Marlo

Thursday, December 29, 2005 10:30 AM CST

We're back! We finally got to leave town for a couple of days to visit Grammy and Papa in Wichita. That's only the second time that we have gone as a family this year. Everyone was healthy and happy (most of the time). Richard and I celebrated our anniversary by returning to the Inn at the Park where we spent our wedding night 12 years ago. It was SO relaxing to be "off duty" for a few hours. Thanks to our neighbors the Kliewers for our yummy dinner at the Olive Garden that night.
On Christmas day we ALL went to church to celebrate Jesus' birthday. I told the kids that that was their gift to him. Sometimes Jesus gets lost in all of the wrapping paper. It was nice to be able to take time out of the craziness of Christmas morning to go and worship with our church family.
Tomorrow we will go have Anna's labs drawn. Last week her liver numbers were up (NOT her AFP--it continues to go down--yea!). If they keep creeping up she will have to have a biopsy next week to find out why. Pray that the numbers will start to go down again.
If I don't write again before Saturday,
Happy New Year!
Love, Marlo

Friday, December 23, 2005 9:39 PM CST

The Salamy's Top 10 Things to be Thankful for in 2005

1. God's provision, patience, and presence---"I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair...He set my feet on solid ground and steadied me as I walked along...Many will see what he has done and be astounded. They will put their trust in the Lord. Oh the joys of those who trust the Lord." (Ps 40)

2. Our family--Thank you for taking care of the kids this summer and continuing to provide respite and support for us.

3. Our friends--Thank you for the countless ways you have encouraged us this year. We will never be able to repay each of you individually. We can only try to pass it on and bless others with the blessings we have received.

4. The transplant team at duPont Hospital--They not only saved Anna's life this summer, but they continue to care for us through phone calls and emails. I am in contact with them several times a week as they monitor Anna's progress and patiently answer my questions.

5. Ronald McDonald House--We never thought we would be one of "those" families who needed the services of a Ronald McDonald House. We were so grateful to have such a nice place to stay for two months this summer.

6. CaringBridge--We are so thankful to have had a way to communicate with people through this website. We check it daily and continue to be amazed and encouraged by the support of people around the world.

7. Jimmy Everest Oncology Clinic--We are fortunate to have a children's hospital in OKC. We especially enjoy Ms Kay the craft lady and Coach Stoops when he comes to visit.

8. DD Kirkland Elementary--We have three kids there now. Their teachers are super. The PTA has helped us with everything from school supplies to a date night complete with babysitting.

9. Northwest Baptist Church--Our church family has rallied around us this year. They have cleaned, cooked, prayed, visited, helped us financially, babysat the kids, and performed countless other good deeds.

10. McAfee and Taft--They have allowed Richard to have a flexible schedule this year so that he can help as needed. His co-workers have been very supportive and generous. They have provided meals, special posters for Anna's hospital rooms, a homemade quilt, pedicure certificates for me, cookies, snack baskets for the hospital, and more. We are very grateful for all they have done.

As you can see we have a lot to be thankful for this year. We hope that 2006 will be a little less like a roller coaster and a little more like a merry-go-round.
Merry Christmas!!!
Love,
Marlo

Sunday, December 18, 2005 3:59 PM CST

Happy Anniversary Richard!
Today is our 12th anniversary. We went out last night to celebrate. Richard made reservation at a fancy restaurant downtown. Unfortunately for us (and them) the power was out when we got there and they didn't know when it would be restored. We were able to get reservations at plan B and had a great time at a Japanese steakhouse. It wasn't the intimate dinner we'd planned, but we made some new friends and had dinner AND a show.

Thank you to my folks and Warren Paul who made contributions to CaringBridge on behalf of Anna this Christmas. I went to the senior prom with Warren, but haven't talked to him in years. I didn't even know he was reading this website! Thanks Warren! I hope you read this.

Love,
Marlo

Friday, December 16, 2005 1:28 PM CST

Good news!
Anna's AFP continues to drop. It was 13.8 this week. We don't know why it is dropping so slowly, but we don't know why it jumped up either.
The choir concert went well until it was time to go and then we had some screaming in the hallway. (No, it wasn't me screaming.) Anna did agree to change her clothes--which she then slept in and wore the next day.
Jacob is feeling better and will be back to school on Monday.
Love, Marlo

Wednesday, December 14, 2005 3:39 PM CST

"I have stilled and quieted myself, just as a small child is quiet with its mother. Yes, like a small child is my soul within me." (Psalm 131:2)

I read that verse this week with Anna on my lap. She wakes up crying in the morning and needs some snuggle time to adjust from sleeping to waking. Just as she is quieted by my presence, so I should be quieted by my Father's presence. How often do I run around crying and complaining instead of crawling up into his lap and resting?

We had labs today, but no results yet. Anna seems to be doing great and Jacob is doing better. His fever is gone today--YEA! The doctor says he can go back to school when he feels like it. He will probably just go for half days until Christmas break. I spent the morning explaining potential and kinetic energy as he and I tackeled his science homework.

I have been blessed so much this week with the kindness of friends--a City Bites sandwich, cinnamon rolls, sugar cookies for us to decorate, a babysitter so that I could take Jacob to the doctor without taking Anna, and a call from Toys R Us to pick up any Christmas gifts I still had on my list. There are SO many ways to bless others this season. It may be just a small thing to you, but it means a lot to the person you do it for. Thank you!!!

Tonight is the kids choir concert at church. Anna and I have been practicing at home so that she can join her choir and perform tonight. Right now she is refusing to change her clothes so I hope we don't have to show up in our pink princess sweatshirt and the too-short maroon pants she has been wearing for two days. (Changing clothes and bathing are on her aversion list at the moment.)

We are trying to put new pictures on the website, but the computer is not cooperating. Hopefully we will work out the kinks soon.
Love, Marlo

Friday, December 9, 2005 6:34 PM CST

Update from earlier today...
We just found out that Jacob doesn't just have strep. He has mono. This is a bummer for him, but it could be VERY dangerous for Anna. It is a very hard virus for transplant patients to fight. We don't want to be in the hospital for Christmas. Please pray for protection for her. This virus lasts for several weeks so it will be impossible to keep them apart the whole time. Pray that I will not unknowingly pass germs from one to the other since I will be caring for both of them.
More later,
Marlo

Friday, December 9, 2005 8:38 AM CST

We hope you are enjoying the Christmas season. Being "housebound" has it's advantages. We are avoiding the rush of activities usually associated with December. We did go to one Christmas party this week, but Anna wore her mask and we left without eating. The kids did get presents, but now Anna says she hates Christmas because she is afraid of Santa coming in our house. (He was at the party.)
Jacob has missed four days of school this week because of strep throat. He has been quarantined to his room. Lucky for him that he likes to read!
Love,
Marlo

Monday, December 5, 2005 10:01 AM CST

The Adventures of the Salamy Family....

We decided that Anna needed to get out of the house so we made plans to drive through the Boys Ranch Town Christmas display. We thought it would be safe since we would be in the car the whole time. We drove about 20 minutes to the BRT where there was a long line of cars waiting to go in. Richard read the sign "32nd Annual Christmas display". Audra said, "Is that all it is? 30 seconds?" (ha ha)
After a few minutes in line Anna starts crying "Do they have a bathroom!?" We are out in the country. There are no bathrooms. We wouldn't let her use a pubic bathroom even if there was one. Dad was ready to turn around and go home. I told Jacob to get in the back of the car and find a container. He handed me a Build-a-Bear box...not gonna work. Try again. He found a box of wipes. I emptied it out, Anna filled it up, and we were on our way. Anna liked the live-action life of Christ display so much that we got back in line and did it again.
We had a great time and made a new Christmas memory.
Love, Marlo

Thursday, December 1, 2005 4:04 PM CST

PRAISES:
*Anna's AFP went down to 16.5. It is still above
"normal", but it is trending down instead of up. YEA!
*We were told today that we could stop one of Anna's liver meds. It was the one that we had to give her at 10pm. It usually woke her up and made her cry. We are SO glad we won't be doing that tonight! As long as her GGT stays normal, we won't have to take that one again.
*Anna has been sleeping better at night. Thank you to those of you who prayed for that. Last night she only got up once.

Anna still spends a lot of time on the couch and we still aren't taking her out in public, but we want to count our blessings.
Love, Marlo

Monday, November 28, 2005 8:45 PM CST

"You are good and you do only good" (Psalm 119:68)

God is good all the time. He does not change like the shadows (or my circumstances).

Anna has been having good and bad days. We are headed back to the clinic for labs tomorrow. The longer we go between visits, the harder it is to get her to go. (She gets used to not going.) She had a low fever Sunday night, but we are thankful that it didn't reach the magic number of 101.
Prayer requests:
*increased strength for Anna
*increased independence--she wants to be
held ALL of the time
*that she would sleep through the night
As you can see from my requests that Anna is like a baby--with an attitude. We are struggling with all of the normal three year old stuff as well as the health issues.
I told Richard one time that I would love to have another baby, but I couldn't take any more three year olds. As my wise college roommate Carol Slover once told me--"Remember, it's just a stage."
With thanksgiving,
Marlo

Thursday, November 24, 2005 5:32 PM CST

Happy Thanksgiving!
We canceled our travel plans so my family brought Thanksgiving dinner to us. My sister and her family and my parents came down from Wichita. We had a great day. Anna spent the day in her pajamas and was passed from lap to lap. She ate a peanut butter and jelly sandwich and broccoli salad--go figure! She has her days and nights mixed up. She finally settles into a deep sleep around 3am then wants to sleep all day. Tonight Grammy has offered to sleep with her--yea for Grammy!

To my relatives in Kansas...I missed seeing all of you today. Thank you for all of the cards and gifts you have sent this year. I hope we will be able to come see you soon.
Love, Marlo

Tuesday, November 22, 2005 10:20 PM CST

Just a quick update. Anna seemed to be getting better yesterday, but has spent today on the couch. She says her tummy hurts and that she will "never feel better!" I hope she is wrong. We have put our Thanksgiving travel plans on hold and are waiting to see what tomorrow brings.
Love, Marlo

Saturday, November 19, 2005 7:42 AM CST

I left that last post up for several days because I like the good news. The bad news is that Anna has been sick all week. She finally spiked a fever Thursday night so I took her to the clinic Friday. They checked her out, took blood cultures, and gave her some IV antibiotics--just in case. I wish we could have a normal cold/fever without having to rush to the hospital every time. (I was reprimanded for not going to the ER Thursday night.) Because Anna has a port/central line, she has to be checked for infection there every time she has a fever. Hopefully we will get that taken out someday. For now, even though we are not using it for chemo, it is helpful for the frequent lab draws.
Now we are back home just trying to make Anna comfortable. I didn't realize that "cold and flu season" would mean that she would have the cold/flu for a whole season. It seems we don't get over one round of sickness before the next one hits. The transplant nurse promises that it will get better. Her immune system will improve as they taper off some of her anti-rejection meds. Until then, PLEASE don't come over if you are coughing. I'm sure it's my own children bringing home germs from school, but I can't do anything about that (besides home school, which has been discussed!)
Love, Marlo

Wednesday, November 16, 2005 2:59 PM CST

"I will send showers, showers of blessings, which will come just when they are needed." (Ez. 34:26b)

We have been blessed today with a good lab report. Anna's AFP is 19. It is still more than it should be, but it did not go up for the first time in several weeks. We will continue to watch it, but we will not be doing chemo right now. I feel like we have been reprieved. We are breathing again and heading into Thanksgiving with truly thankful hearts. As we are rejoicing, we are confronted with those who are grieving. This week I met a teenager who has lung cancer and there is nothing they can do. I met another family who was still reeling from the initial shock of diagnosis of their 18 month old.
"Jesus Christ is the same yesterday, today, and forever." (Heb. 13:8)
Count your blessings...
Love, Marlo

Tuesday, November 15, 2005 8:23 AM CST

Happy Birthday Richard!!!!!
Even though Anna may not remember what you did this year, I will never forget. Thanks for being a great husband and father. I love you!
Marlo

Sunday, November 13, 2005 1:45 PM CST

"Do not be afraid, for I am with you. Do not be dismayed for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand."
Deut. 31:8

We have had a good weekend. Last night the kids went to their grandparent's house while Richard and I did some Christmas shopping and went out to eat at a little Persian restaurant. This morning it was my turn to take the kids to church. Anna wanted to go, but I'm afraid of her getting sick before Thanksgiving. We don't want to spend the holiday in the hospital if we can avoid it.
Love, Marlo

Thursday, November 10, 2005 2:55 PM CST

"Do not throw away this confident trust in the Lord, no matter what happens." (Hebrews 10:35)

I realized during the last two weeks that I don't trust God. If I only trust him when Anna feels good, or when we get good test results, then that is not trust at all. That is treating God like a genie. I have a long way to go to trust God completely--even when it hurts, even when I don't understand. I know that he does not change--ever. So now I must believe it.
Today we can praise God for a clear CT scan. (But I want to be able to praise him no matter what.) The doctors have agreed to not rush into chemotherapy, but to watch Anna's AFP levels. This is GREAT news and we can relax again. We hope that her levels will eventually go back down and stay there. Today she feels good and is fighting with her brother. What I thought was cancer causing her to be so sick must have been a virus. It will be hard not to think "cancer" whenever she gets sick. Nothing will ever be "just a virus" after last February when all this started.
We will be staying home during the cold and flu season. We would love visitors as long as they are healthy. Anna needs someone besides me to play with during the day!
Thanks for praying for us and encouraging us. We hope we will be able to encourage others with the comfort we have received.
Love, Marlo

Tuesday, November 8, 2005 9:27 PM CST

I'll be brief -- we're all worn out. Anna's AFP (the cancer number) yesterday was 22, up a point or so from the week before. Still low but trending up slowly. The CT scan was today -- Anna did great! We won't know the results for a day or so but will hopefully have some decisions made by the end of the week. We just pray that the docs have wisdom to do the right thing.

Anna is feeling and acting much better today -- the perkiest she's been in a couple of weeks.

Monday, November 7, 2005 10:18 AM CST

Just a quick update from me (not Marlo) and we'll post some new pictures later. We were trying to get some new pictures up last night but Anna's fever came back and so did her cough. We were concerned that she might be developing pneumonia from the virus she had last week so we went ahead and took her in to the hospital. Wouldn't you know that as soon as we got there her fever dropped, she perked up a little and everything looked better. Her chest x-ray came back clear and her blood work was fine so she and Marlo just went to bed. They'll be coming home again later this morning. We were tempted to complain about "wasting" a night in the hospital when nothing was wrong. But we prayed over her and asked Jesus to spare her any more of this sickness so we probably shouldn't complain when He answers.

We should have an AFP later today and we'll do the CT scan tomorrow. By midweek then we should know whether more chemo or surgery will be required. We have repeatedly asked the Lord Jesus to heal her little body completely and are praying that the results of the AFP and the scan confirm that He has done so. Thanks for praying with us, staying with us, and loving my family through all this.

Richard

Friday, November 4, 2005 2:35 PM CST

We are home again. We were able to do 3 of the 4 tests. They had to reschedule the CT scan because they were afraid to sedate Anna because of her croupy cough. So there will be no answers to our questions until next Tuesday. We know that God knows what is going on inside her little body. If he has chosen to keep that hidden from us for a few more days then so be it.
We had a nice isolation room to stay in today between tests. Anna was able to take a nap and then later watch movies while we waited.
The other kids enjoyed a day at the Omniplex with their grandparents thanks to Nancy S. who has arranged all sorts of special activities for our family the past few months.
*Pray for Anna to get over this virus without having to be hospitalized.
*Pray for peace as we trust God and live with the unknown the next few days.
Love, Marlo

Friday, November 4, 2005 6:39 AM CST

We had a rough night last night. Anna's illness is getting worse (they always do before they get better.) She feels pretty bad. Pray for a quiet place to rest in between tests today. Pray also for a good CT scan.
Marlo

Thursday, November 3, 2005 2:24 PM CST

The pediatrician thinks Anna's fever is just a virus since she has some congestion and a barking cough. We brought her home and are "watching her". We will spend the day at the hospital tomorrow starting with an Echocardiogram and EKG at 8:30, CT at 1pm and a kidney function test at 3pm--YUCK!!!! I think between those tests we might sneak out to the mall and go to Build-A-Bear. That's something she has been wanting to do and it would give her something fun in the middle of a bad day. Then again, she may not be up to the excitement and just want to take a nap.
It is SO hard to do all of these tests again. The reason they do these is to establish a baseline before they start chemo. I guess the doctors want to be ready. We haven't given up hope that the AFP will take an unexplained nosedive, but we are prepared to do what needs to be done.
Love, Marlo

Thursday, November 3, 2005 7:01 AM CST

After I posted that last message, Anna's fever did go down to under 100 so we decided to stay home. Praise God that the fever did not come back when the Tylenol wore off! At 3am it was 98.9. We are so thankful that we didn't have to spend the night in the hospital. We will see what the rest of today has in store...
Love, Marlo

Wednesday, November 2, 2005 9:22 PM CST

We had a good day today, but tonight Anna's fever has gone up. We gave her some Tylenol, but so far it is not working. I snuck upstairs to pack our bags for the hospital just in case. Going to the hospital at night is one of our least favorite things to do. Pray for God's grace to help us through the next few hours. Thank you for all of the messages on the guestbook. They have been a great encouragement.
Love, Marlo

Tuesday, November 1, 2005 3:56 PM CST

"Weep with those who weep." (Romans 12:15b)

Thank you to those of you who have wept with us today and shared our burden of hurting. We appreciate the words of encouragement and the acts of service. This morning Richard prayed that God would show us something good today. In my mind I thought, "If anyone calls today and asks what they can do, I'm going to tell them my kitchen needs to be mopped." I KNOW that is a crazy thing, but it was bothering me yet I didn't have the energy or the desire to do it. After the kids and Richard left, the phone rang. I wasn't in any condition to talk, but I had to answer it in case it was the clinic calling about the CT scan. It was a friend who just asked how I was doing and then listened to me spill my heart out. When she asked what she could do I blubbered "My kitchen floor needs to be mopped and I need a shower!" Five minutes later she was at my door. She sat and played with Anna while I took a shower and a few minutes to collect myself. When I came downstairs she told me that her cleaning lady was on the way over. I cried again when a stranger came in and started cleaning my house. (Of course I teased my friend that my floor must have been too much for her!) There were more phone calls and another visit later in the day. I asked God to just get me through the morning and he lovingly sent his servants to walk with me and allow me to catch my breath.
We will have the CT scan on Friday at 1pm. It's not a good time since Anna will not be able to eat for 8 hours before, but we are grateful that they were able to get us in this week.
Love, Marlo

Monday, October 31, 2005 3:44 PM CST

I haven't written much this week--not because there wasn't anything to say, but because it was too hard to say it. Anna's AFP went from 8 to 15 last week. We were hoping it would go back down today, but it didn't. It is now at 20.9. The AFP is a good tumor indicator for this type of cancer. We are in the process of scheduling a CT scan to look for metastisis. As you can guess, the thought of facing more chemo and surgery is discouraging. We are clinging to our faith that God is the same no matter what happens down here. Once again we place our daughter's life in his hands. She has asked about heaven and dying several times this week. Of course those are conversations you wish you never had to have with your three year old. She was very afraid of going to heaven by herself and asked if she could take baby and Goofy.
Today I am crushed down, but not destroyed. I have to somehow put a smile on my face and go trick-or-treating.

*Pray that God would take away Anna's fears of dying.
*Pray that our faith would be strengthened and not shaken.
*Pray that the AFP would come down this week. It is a number that tends to bounce around, but because it has trended upwards, there is cause for concern.
Love, Marlo

Thursday, October 27, 2005 4:01 PM CDT

Thanks to Stacy for completing our little Miss Minnie's outfit. I'll post a picture soon.
Thanks to Susan for our new favorite toy--a Jungle Book jungle complete with Mowgli and Baloo figures. Will, Audra, and Anna are fighting over it as I write. We will accept all hand-me-down toys that have anything to do with Goofy or the Jungle Book!
We are trying to adjust Anna's anti-rejection meds this week. She had twice the amount she was supposed to in her blood on Friday. That may explain why she was SO grouchy and out of sorts. She seems to be feeling better now that we have reduced the amount she is getting. She even went to choir last night which is the highlight of her week.
We will do her labs again on Monday which will give her a good excuse to wear her costume to the clinic. Her AFP was up last week so pray that it comes back down. If it goes up again then we will be doing CT scans to see if there is anything there.
Love, Marlo

Saturday, October 22, 2005 9:15 PM CDT

"let our children see your glory at work" (Psalm 90:16)

Happy Fall! What a wonderful time of year. Thank you Lord! Everyone is doing fine here. We enjoyed another visit with Bob Stoops on Friday. Anna wanted me to tell him that she had seen him on TV. We also enjoyed visiting our friends on Thursday and Friday. We aren't taking Anna into any crowds (ie. stores, malls, theaters), but we feel like she needs to get out of the house sometimes. She was acting EXTRA grouchy on Thursday, then we found out on Friday that her blood sugar was low. Now we are making sure that she eats!
Love, Marlo
PS. Does anyone have any mouse ears I could borrow? Anna is going to be Minnie Mouse, but the store was out of ears.

Wednesday, October 19, 2005 8:18 AM CDT

"Always be joyful. Keep on praying. NO MATTER WHAT HAPPENS, always be thankful, for this is God's will for you who belong to Christ Jesus." (1 Thess 5:16-18)
"May the Lord of peace himself always give you his peace NO MATTER WHAT HAPPENS." (1 Thess. 3:16)

We are praying that God's peace will reign in our home NO MATTER WHAT HAPPENS. This morning it was Will waking up with a fever. Everyone else is doing great and we are looking forward to Fall Break starting tomorrow. Tonight the kids are planning to have a slumber party in the living room. They have already put down their sleeping bags.
Hoping you have a great day NO MATTER WHAT HAPPENS!
Love, Marlo

Sunday, October 16, 2005 3:50 PM CDT

We are back home! Anna is feeling good. She had to had a blood transfusion today because of low hemoglobin. We left as soon as that was over. She and Audra are in their room playing dolls as I write. Thanks for praying for us and checking on us.
Love, Marlo

Saturday, October 15, 2005 12:14 AM CDT

Just another Saturday at the hospital! Anna is feeling better. Her fever broke last night and she drank two cartons of milk this morning. I'm ready to go home, but the doctor wants to wait. Right now I am in the Aikman Endzone with the big kids while Anna is napping. There are some college students here doing a service project. The kids are enjoying having someone to play with and I am enjoying a few minutes on the computer. We'll have a pizza party soon. So you see it really isn't such a bad Saturday after all.
Love, Marlo

Friday, October 14, 2005 12:26 AM CDT

Anna was admitted to Children's Hospital yesterday because of the high fever and nausea. After a brief stay in the ER (a mere 11 hours confined to a 8'X10' room), she was moved to 3G -- our usually floor. She is on high-powered antibiotics and the Delaware team thinks it may be a bacterial infection that is sometimes common following living donor transplants. Anyway, we're thankful for several good weeks at home, don't know how long this stay will be, and hope that she gets to come home this weekend. But before she can come home, her fever will need to go away and they'll need to identify the source of the infection.

Thursday, October 13, 2005 12:18 AM CDT

This morning, Anna's fever spiked to 101 and she threw up three times. We've taken her to the Children's ER and they've drawn labs. Depending on the results, she may be admitted to Children's for a couple of days. We're hopeful it's just a virus but we don't have enough experience with her new liver to know for sure.

Wednesday, October 12, 2005 8:15 PM CDT

"As a belt clings to a person's waist, so I created (you) to cling to me," says the Lord. Jerimiah 13:11

What a beautiful picture that is. We are created to cling to God. We are clinging to him as we wait through another fever. Anna has had a low fever for over 24 hours. We were packed for the hospital last night, but never went. We think this is just a virus and as long as her temp stays below 101 we will just wait it out.
Love, Marlo

Monday, October 10, 2005 12:28 AM CDT

We had a great weekend. Friday night the kids stayed with friends while Richard and I dined by the lake. It's a very small lake near our house--not on any maps, but the sunset was pretty. Saturday Anna went to her grandmother's house while the rest of us took our yearly sojourn to Frontier City. The kids had a great time, but I would not recommend riding the tea cups three times in a row. I felt sick for the rest of the day!
We are enjoying the change of seasons and we have SO MUCH to be thankful for right now. I don't know what will happen tomorrow, so I will enjoy today.
Love, Marlo

Friday, October 7, 2005 3:47 PM CDT

"Let your lives overflow with thanksgiving for all He has done." (Col. 2:7)

Good news! Anna's AFP did not go up. (see today's earlier post) It was 9.5 last week and 9.2 this week. It's still higher than the 4.2 she had 3 weeks ago, but I think if the cancer was active that it would have gone up this week. Having that test done on a regular basis is just something we will have to learn to live with. Anna's liver function numbers are normal or close to normal so it looks like her daddy's liver is doing great. Thank you for praying for us. Tonight we will celebrate!
Love, Marlo

Friday, October 7, 2005 12:43 AM CDT

A big thank you to our friends at Kirkland Elementary. We are going to enjoy a "date night" tonight thanks to them. The kids will enjoy the two teachers who are coming to babysit. We appreciate all of the kind things that people have done for us during the past 7 months. Forgive me if I have failed to send you a personal thank you. I am very behind on those.
Anna is feeling good. We went for labs this morning and she did great. We are still waiting for the results. Pray that her AFP will go down. It bounced up last week. They say that there isn't any reason to worry unless it keeps going up. It is not unusual for it to bounce around--as long as it stays low. It is hard to wait for test results, but there is nothing we can do so we are trying not to worry and be thankful for the wonderful week we have had.
Love, Marlo

Wednesday, October 5, 2005 1:27 PM CDT

On Monday when we were at the clinic one of the nurses asked Anna what she had done over the weekend. She said, "Well, I never go to the zoo!" I'm not sure that answered the question, but I got the message. We went to the zoo yesterday and enjoyed the nice weather. A lady asked her how old she was and she said, "I'm three. I'm old enough for choir." She is starting choir tonight at church and is very excited. She is wearing her "choir shoes" and she keeps asking if choir is "today or tonight". I'm not really sure how to answer that one. Thank you Susan and Shawna for giving us something to look forward to!
Love, Marlo

Monday, October 3, 2005 12:13 AM CDT

Anna's hemoglobin was 9.2 this morning so she will not need a transfusion. Thanks for praying.
Love, Marlo

Friday, September 30, 2005 12:12 AM CDT

"In everything you do, stay away from complaining and arguing" (Phil. 2:14)

What I did today wasn't really complaining or arguing--it was more like suggesting or pleading. We went to the clinic today for Anna's labwork. We were having a nice time with Coach Bob Stoops. He actually came into the treatment room and took pictures with Anna. While he was visiting with her, the nurse came in and said that Anna needed a blood transfusion. Her hemoglogin was 7.3. They usually transfuse if it's under 8. That would mean we would have to be admitted and then discharged sometime tonight. I asked if we could please wait until Monday and check it again to see if it would go up on its own. The doctors here and in Delaware said that would be okay, but we have to take her in this weekend if she seems extra tired or pale. Please pray that her hemoglobin would be above 8 on Monday so that we could avoid another transfusion. I had NO idea that anything was wrong. Anna rode her bike on the trails yesterday and then rode around the block two times last night. She is usually the last kid to go to sleep and the first to wake up. I haven't seen any evidence of low blood counts (ie. fatigue). We have been out of the hospital 3 weeks now so we are feeling good about that. We certainly don't want to take it for granted.
Love, Marlo

Thursday, September 29, 2005 9:23 AM CDT

"Praise the Lord; praise God our Savior! For each day he carries us in his arms." (Psalm 68:19)

We have had a blessedly uneventful week. We took Anna to church last night for the first time and she was thrilled. She loved seeing her friends. I made her wash her hands about 10 times, but other than that it was a normal Wednesday night. Because she feels good, she is fighting us about taking her medicine. She had such little control over her body this summer that now she is trying to control everything. Unfortunately for her, she has to take medicine 5 times a day. Oh well, we can deal with that. At least we are home! I think Anna's eyebrows are starting to grow back as well. Last night she asked Richard to tell her a story about Anna "when she had hair".
Love, Marlo

Monday, September 26, 2005 9:50 AM CDT

Happy 5th Birthday Will!
I have been sick all weekend with a cold, but I'm feeling a little better today. I am so thankful that I haven't been sick like this for the last 7 months. I feel like the Israelites whose shoes didn't wear out during their 40 year trek through the wilderness. God knew that I couldn't get sick before now. Anna is doing great. We are still dealing with the bladder/kidney issue, but the doctors think it is caused by the chemo and not diabetes.
We have made a HUGE transition from twice a week clinic/labs to once a week. For now we will go every Friday.
The Make-a-Wish people came this weekend to interview Anna. (That's another thing we never thought we would be eligible for.) She told them she wanted to ride the tea-cups with Goofy. They asked her what she would like if she couldn't have that and she said, "I would like to ride the Dumbos." So basically it's Disneyworld or bust.
Love, Marlo

Thursday, September 22, 2005 2:03 PM CDT

If the last journal entry made you cry, this one will make you laugh.

Last night Richard stayed home with Anna while the rest of us went to church. He was helping her pick out some clean clothes and asked her if she wanted to wear her t-shirt from Delaware that was like his. (They have matching transplant t-shirts.) She looked surprised and said, "You have a shirt from Delaware? Did you come visit me?"
Poor Richard. He doesn't even get credit for visiting her in the hospital--much less, donating an organ. Later when I reminded her that Daddy had given her part of his liver she started crying and saying she wanted her liver back.

One more from Anna...
Today I gave Anna a caramel apple that I bought at Sam's. I told her that they are my favorite fall treat. She asked, "Did it fall from a tree or from Sam's?"

Now one from Will...
Richard and Jacob were both sick on Monday and they stayed home. When I picked up Will from school I told him that Daddy and Jacob were home sick. He said, "Why are they homesick? Where did they go?"

An old one from Jacob....
When Jacob was about 4 years old I stopped for a funeral procession. I told him that I stopped out of respect for someone who had died. Then I pointed out the hearse that was carrying the person's body. He said, "I thought when you die you go to heaven." I explained that you do go to heaven, but your body doesn't. He thought about that for a minute and then exclaimed, "You mean just your head goes!?"

Thanks for allowing me to share my funny stories.
Love, Marlo

Tuesday, September 20, 2005 10:02 PM CDT

"Looked at Anna's CT. Looks great. No evidence of recurrent disease. The liver looks good. Ducts still slightly dilated, but much better. Looking good."

Adela

This was the email I got tonight from Anna's surgeon in Delaware. (See photo album) It is great news. Also Anna's thirst has decreased and so far it looks like she doesn't have diabetes. Yea!
Tonight when Anna went to bed she started crying. When I asked her what was wrong, she said that she didn't want to grow up. I was tired so I said, "Ok, you don't have to." She was quiet for a little while and then started crying again. "I don't know how to stop getting bigger!" I didn't have an answer for that one so I crawled in bed with her and held her and whispered stories of when I was a little girl. Then she said, "Will you always be my mom?" Oh yes sweet girl. I hope you live a long time and I will always be your mom.
Love, M

Monday, September 19, 2005 1:07 PM CDT

"Though the Lord gave you adversity for food and affliction for drink, he will still be with you to teach you." (Isaiah 30:20)

I am so thankful for the days when nothing happens. Today something happened and then I read this verse and it reminded me that God is still with us. I noticed this week that Anna has been very thirsty and consequently going to the bathroom a lot. These are some of the symptoms of diabetes and one of her anti-rejection drugs can cause diabetes in 10-20% of the people who take it. This was news to us! Tomorrow we will do a fasting glucose test and see what her levels are. It seems too much for one person to juggle--cancer, liver-transplant, and diabetes.
We also took Jacob to the doctor today--the eye doctor. It turns out that he can't see very well and will be getting glasses later this week. I remember getting glasses in the 4th grade and finding out that I could see the individual leaves on the trees. I didn't know that you should be able to do that. I'm sure Jacob will see everything in a new way as well.
Love, Marlo

Saturday, September 17, 2005 8:26 PM CDT

As my mom says, "No news is good news." In our case that is true. We have managed to stay out of the hospital for 8 days now. We are going for a record 2 weeks if we can make it until next Friday. Anna's counts look good and we are getting used to spending two mornings a week at the clinic. We are making friends by being there on a regular basis. We managed to have a night out last night thanks to our church's "Parents Night Out" and our friend Kristi who came over to watch Anna. We are keeping Anna at home as much as possible, but trying not to let her know that she can't go anywhere. Hopefully her immune system will recover enough that we won't worry so much about getting her out. Maybe when we have managed to stay out of the hospital for a longer peroid of time we won't be so wary.
Thanks to Leslie for coming over so that I could go to the store this week. I appreciate everything that our friends have done for us.
Love, Marlo

Wednesday, September 14, 2005 12:26 AM CDT

"I will thank you, Lord, in front of all the people."
(Psalm 57:9)

We have so much to be thankful for! We've had such difficult days this summer, that now we can be thankful for normal days and normal inconveniences. We don't want to be like Anna who can ruin her whole day by worrying about tomorrows clinic visit. I try to get her to see what she has to be thankful for today instead of worrying about tomorrow. ("Do you have to take a shot?"--no "Are you in the hospital?"--no "Do you have to go anywhere today?"--no "Then be happy!")
God says the same thing to us when we worry about the future. ("Do you have a roof over your head?"--yes "Do you have your family together?"--yes "Do you have running water?"--yes "Then be content with what you have!")
Open my eyes Lord, to see what I have instead of what I don't have.
MS

PS. I am not "teaching" a cooking class. I'm just "taking" a cooking class. If you are in OKC, come join us on Sunday nights at 5:15.

Sunday, September 11, 2005 8:49 PM CDT

After I wrote yesterday's post, Will came down with a high fever and upset tummy. He was quickly quarantined. After a difficult night, he was feeling better. Richard stayed home with Will and Anna while I took the "big" kids to chuch. After her nap, Anna got to go to her Sittie's house to bake cookies. Tonight I started a cooking class at church while the kids went to Awanas. It feels good to be doing something just for fun.
Love, Marlo

Saturday, September 10, 2005 4:33 PM CDT

We were discharged yesterday at 5pm. Our dinner arrived right after we got home. Thanks friends! This morning we all slept in and have had a nice quiet day. We won't go back to the clinic until Tuesday.
Love, Marlo

Friday, September 9, 2005 10:59 AM CDT

Anna's fever went away this morning, which is good news, but she is still in the hospital. We're not sure when the doctors will release her; sometimes they like to wait 24 hours after the fever has broken to be sure that they've addressed any issues. Of course, we want to be sure she's okay, too. She will have a second hemoglobin transfusion today (she had 1/2 of it yesterday but she is still too low). On the bright side, her liver numbers look better than they ever have. So we're grateful for the good things and trusting that the bad things will pass away soon.

Richard

Thursday, September 8, 2005 8:42 AM CDT

As of Thursday morning, Anna is still in the hospital at OU and still has a fever. We are not sure of the cause of the fever and are awaiting labs and blood cultures. Please pray for strength for Marlo and that Anna would soon return home. It seems like we just get used to being at home when we have to return to the hospital. Marlo's mom was able to come down at the last minute to help with the kids.

Richard

Wednesday, September 7, 2005 9:45 AM CDT

For those who haven't read Marlo's post yesterday, please do so. However, I wanted to give you a quick update this morning. Anna had a CT scan scheduled for this afternoon, but woke up with a very high (for her) fever of 102.5. So Marlo took her to the OU clinic this morning first thing to have her checked out. They will take blood cultures and give her some antibiotics. Please pray that this fever goes away and we can get on with CT scan sometime soon. Anna has had a fever every week since returning from Delaware (she had them there too). There seems to be no explanation for them, such as an infection (which is good) but at the same time it is frustrating to not know if there is a cause behind them or not. Also, her hemoglobin is still too low and if it doesn't bounce back by Friday, we'll need to have another hemoglobin transfusion. In any case, I thought she was really recovering from the last round of chemo but her body still seems to be weaker than I expected. Please continue to pray for strength and healing. Thanks for your faithfulness.

Take care,
Richard

Tuesday, September 6, 2005 4:13 PM CDT

"And when your teeth are gone, keep your lips tightly closed when you eat!"
(Ecclesiastes 12:4)

That verse has nothing to do with our situation today, but I wanted to show you what you can find if you read the Bible all the way through. It's full of practical advice as well as inspiration!
We had labs this morning and Anna's AFP is 5.5!!!! That's the lowest it's ever been. It's normal!!!!
We are still dealing with the after effects of the chemo as her hemoglobin is low enough to need a blood transfusion. We are going to watch it and hope that it comes up on its own. Tomorrow will be a long day. We have a CT scan at 1:30. The scan itself is not so bad, but Anna can't eat for eight hours beforehand.
Last night Anna asked me if they were going to cut her tummy open at the clinic today. She just recently figured out that they cut her open to put her liver in. She saw the scar, but never knew how it got there. If I talk about it she says, "Don't talk about my liver!"
Thanks to all of you who have fed us this month. We invite anyone who reads this to join our church "family" at Northwest Baptist Church. They have helped us so much.
Love, Marlo

Monday, September 5, 2005 7:46 AM CDT

"Give whatever you can according to what you have...Right now you have plenty and can help them. Then at some other time they can share with you when you need it."
(2 Corinthians 8:11,14)

I have seen these verses applied to my own life. Years ago I used to go to someones house and help her once a week with her triplets. One day she asked me why I was doing that. Well, besides loving babies, I told her that I hoped someone would help me someday if I was in her situation. I have seen that any time, money, food, service, etc, that I have given in the past has been returned to me a hundredfold.
When we give to the poor and hurting, Jesus says we are doing it for him. I hope you will give what you can to help the LA evacuees (or someone else you know who needs it). Thank you again to those of you who have helped us.
Have a great Labor Day!
Love, Marlo

Friday, September 2, 2005 7:59 PM CDT

We have had some blessed normal days this week. Anna has been well since our visit to the ER on Monday. Her numbers are looking good. We have a CT scan scheduled for next Wednesday to establish an "off-chemo" baseline. We will continue to have labwork done on Tuesdays and Fridays. This information is needed to monitor her anti-rejection medicine and to watch her liver function numbers. Of course we will also watch her AFP to make sure that it doesn't rise.
We are glad to be finished with chemo, but now we must adjust to living with uncertainty. Of course we all live every day with uncertainty (we just think we have things under control). Another mom of a child with cancer described it as a constant threat. Her family has faced the future by living each day to the fullest. I hope that I can have her attitude of embracing each day instead of wasting my time worrying about what might happen.
Tonight the boys are at a football game, the girls are playing dolls, and I am thankful for running water, a bed, and gas in my car. What is happening on the coast can make anyone's problems seem small.
Love, Marlo

Tuesday, August 30, 2005 8:32 AM CDT

Good Morning. We arrived home from the ER at about 3:00 this morning - they took blood cultures and checked her counts and gave her a dose of antibiotics. But her fever went down and she is now headed to the clinic for her regular Tuesday labs. We are glad that we didn't have to be admitted to the hospital but it's hard to explain the "bright side" to a grumpy, tired 3 year old -- especially when you yourself are tired and grumpy.

Anyway, we are now moving into "maintenance" mode and would ask for continued prayer that the cancer never, ever, ever, ever, ever, ever, ever, ever comes back and that her liver always, always, always, always, always, always works. One of her key liver numbers is still a little too high and we would feel more comfortable if her cancer number (the AFP) were a little lower but right now we're thankful that she's healthy and happy most of the time. We're looking forward to her hair coming back in, for renewed strength, and time together as a family. There will still probably be late night ER runs, unexplained fevers, anxiety over the results of the latest labs or scans but we have come a long way in a very short time. There is a line from the "Purpose Driven Life" that says -- "God is real no matter how you feel." I can with confidence say that God is real even though at times my feelings have told me differently. We've (I've) felt alone, scared, anxious and absolutely in the dark about our circumstances. But we've never felt unloved or uncared for by our friends and families. God has used you to encourage and strengthen us and will continue to use you to do so. Thanks for caring and for keeping up.

Grace and Peace in the Name of Christ,
Richard

Monday, August 29, 2005 10:20 PM CDT

I know so many check this site at night, so I wanted to give you a quick update. Marlo and Richard took Anna to the ER tonight due to a fever. Please pray that they will find out the source of the fever and that it will be treated quickly. Thanks for your prayers for our precious friends! -Shawna

Monday, August 29, 2005 2:26 PM CDT

There has been a change in plans. Anna will NOT be starting another round of chemo tomorrow. After several emails back and forth between Oklahoma, Delaware, and California, it was decided that we would just monitor Anna and not do anymore chemo at this time. While this is a big relief to us, it also makes us a little nervous. Now we move from being pro-active to waiting and watching. Tomorrow we will go to the clinic for what will be bi-weekly lab visits. Anna was complaining about having to go so I told her to be happy that she didn't have to spend the night. I know I'm happy about that!
Love, Marlo

Sunday, August 28, 2005 9:17 PM CDT

We had a great weekend. Anna spent some time at her Sittie's house. The rest of us enjoyed the Steven Curtis Chapman concert at the ballpark (thanks John!)
We think we are going into the hospital Tuesday for round 7 of chemo. Please pray for the doctors as they are trying to agree on the best drugs to use for these last two rounds. Some doctors don't even think we should be doing any more chemo, but our surgeon still thinks it is in Anna's best interest. She is concerned that there may still be cancer cells somewhere else since Anna had tumor in her portal vein. (The cells could have traveled through the vein to other parts of her body.) Pray for our family as we spend another week in the hospital.
Thank you to all of you who have supported us through prayer and through practical ways.
Love, Marlo

Thursday, August 25, 2005 5:31 PM CDT

"I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair...He set my feet on solid ground and steadied me as I walked along..." (Ps. 40)

Have you ever been in the "pit of despair"? I know everyone has, but you don't have to stay there if you know the one who can lift you out. I hope that I am trusting in God and not my circumstances and test results, but it sure is easier to relax when things are going good. I am thankful today for some pampering provided by a couple of friends. Anna also enjoyed a vist from her friend "Summers". She is having a great day playing with her brother and sister. With this chemo regimen we have about 6 good days a month. We will have blood tests and meet with the doctor tomorrow.
Love, Marlo

Wednesday, August 24, 2005 4:04 PM CDT

Good news from the clinic today. Anna can stop her GCSF shots and her AFP is 7.7. We are enjoying the good news. Will enjoyed going to a new friends house while we were at the clinic. My goal for him in pre-K was to make a friend and it looks like he already has. I am also thankful today for an encouraging visit from a friend. Thank you to those of you who have touched our lives the past few months.
Love, Marlo

Tuesday, August 23, 2005 10:46 AM CDT

I think all of my journal entries are going to have to be short and sweet from now on. I don't seem to have any spare time now that we are home. I still have to take care of Anna, but now there are four other people and a house to take care of too. Anna is asleep on the couch and Stacy is picking up Will from school so I have a few minutes (of course I feel like I should be doing laundry or organizing something). We got home around noon yesterday. They never did find a source of the fever. I think this is just what we will face if we continue on this course of chemotherapy. We have labs tomorrow and again on Friday, when we will also meet with the oncologist to discuss further treatment. She is supposed to start her third round of chemo post-transplant on Monday. This regimen involves an entire week in the hospital. Today is only the second day since we've been home that we haven't had to go to the hospital or clinic. We are all tired and ready for this to be over.
Pray that Anna will eat and drink so that we won't have to be admitted for dehydration.
Pray for wisdom. Should we continue this chemo or switch to something less toxic?
Pray that I would "travel steadily along (the Lord's) path." (Ps 37:34) I need a time of refreshing which I know will come.
Love, Marlo

Sunday, August 21, 2005 1:53 PM CDT

Anna is still in the hospital. Hopefully she will get to go home tomorrow. Her fever is gone and so far they haven't found a source of infection. Her platelets are very low. When they accessed her port, it took a long time for her to stop bleeding. Richard came and stayed with Anna so that I could go to church today. I brought the kids home for lunch and now we are getting ready to go back up to the hospital.
Love, Marlo

Saturday, August 20, 2005 4:13 AM CDT

It's 4am and we are on our way to the hospital. Anna has a high fever and her WBC is 0.6 which means she has nothing to fight with. She needs to be on IV antibiotics. Pray that the medicine will work quickly and get rid of the source of fever.
Obviously she does not want to go back to the hospital after 3 1/2 nights at home. Pray that it will be better here in OKC because she can see friends and family.
Pray for my other kids as they will wake up and I won't be here--again.
Love, Marlo

Thursday, August 18, 2005 8:58 PM CDT

Back by popular demand....

We got back to the house Tuesday night around 8pm. We had a welcoming committee waiting for us. The yard was completely covered with balloon flowers and there were balloon butterflies and bumblebees hanging from the trees. It was so festive! Thanks to those of you who had a part in making our homecoming so special.
On Wednesday morning it was back to the oncology clinic for bloodwork. It was hard to wake Anna up to do that since she had just gotten home. But what a surprise when we got there. Coach Bob Stoopes (of the OU football team for those of you who aren't from "these parts") was visiting the clinic. He signed Jacob's t-shirt and we had our picture made with him. Anna wasn't too impressed, but she did let us take her picture. Her counts are very low so we are continuing to take her daily Neupagin shot. This shot preoccupies her mind 80 percent of the time. She worries about it from the time she gets up in the morning--even though she doesn't get it until 6pm. Hopefully she will not have to take them too much longer. We will go back for more bloodwork tomorrow.
I am so thankful that I was able to be here to take the kids to school today for the first day. I am thankful for the chaos around the dinner table. I am thankful for the little and big things that people did for us the past two months. I am thankful for a quiet (and dark) room to sleep in. I am thankful for the PTA who took care of getting our school supplies. I am thankful for all of the hugs I keep getting from my kids. I am thankful for a husband who held things together and learned how to do the things I do.
I am tired, but thankful.
Love, Marlo

Tuesday, August 16, 2005 9:49 PM CDT

More details tomorrow (from Marlo) but Anna and Marlo are safely back in Oklahoma City. Anna was very excited to be home and is snuggled up in her bed. Marlo is tired from a long day of travel but all seems to be well.

Thanks again for your prayers for their safety. Our Lord and King was faithful yet again to bring my family back under one roof. My thanks to Him and to all those who have been traveling this journey with us.

Blessings,
Richard

Tuesday, August 16, 2005 5:02 PM CDT

Travel update: Marlo and Anna will make their flight to OKC since its departure was delayed until 6:05 (their time). They are now due to arrive OKC at 7:15. Marlo sounds okay but Anna is getting very tired and grumpy from the delays.

Richard

Tuesday, August 16, 2005 2:02 PM CDT

Marlo and Anna have not yet arrived in Atlanta because of a thunderstorm. They had to land in Augusta to refuel. It appears that unless things happen very quickly, they will miss their flight to OKC. There is a later flight at 10:35pm but I don't know whether there is room for them since it is a smaller plane.

Richard

Monday, August 15, 2005 12:49 AM CDT

"But the Lord watches over...those who rely on his unfailing love. He rescues them from death and keeps them alive..." Psalm 33:18-19

God is so good. As I sat this morning during my quiet time and watched Anna sleep I was so amazed that she is alive and we are going home tomorrow. I NEVER thought I could do what I have done the past two months. It was only by trusting God one day at a time--and now there is only ONE day left! The hardest part of this whole journey was getting out of bed on June 16th. I didn't want to start down this path. I wanted things to stay the same. But you know, life is about change. I have had an incredible journey and it wasn't as hard as all of you think it was. God's presence was there with me every step and his word was there to encourage me each day. I know from experience that I will forget about the bad things and I will remember the lessons I learned and the people I met. We said goodbye today to some very special people. I will forever be grateful for what they have done for Anna. I came here not knowing if I would return home alone. I knew that I could lose both Richard and Anna, but God has been merciful and allowed me to keep them both for a little while longer.
Thank you to all of you who have followed our progress. Although we will be home, we still have two more rounds of chemo which means two more weeks in the hospital. At least we will be in OKC so we can see our friends and family.
I'm packing up the computer so until next time...
Love, Marlo

Sunday, August 14, 2005 12:03 AM CDT

Anna is continuing to improve. She kept me up late last night talking and then got up early this morning. We will probably be discharged around 6pm tonight. She is going to get a blood transfusion this afternoon because her hemoglobin is low. It looks like we are really going to be coming home. We have to come back for labs tomorrow and then we have to report to our oncology center Wednesday for more labs, but at least we will be home!
Pray for Anna to be brave on Tuesday. She is afraid to get on the airplane. She doesn't like it when they "tip over". Her aunt Shonda has promised to call the pilot and tell him not to do that. I'm sure I will be speaking to the stewardess about it as well.
Love, Marlo

Saturday, August 13, 2005 4:24 PM CDT

I am happy to report that Anna is much better today. Yesterday she was either asleep or crying--all day long! She finished her chemo at 10pm and I can see a difference today. She is still tired, but she is not crying all of the time. Yesterday she didn't get out of bed, but today she has spent a lot of time on the couch in our room. She has been giving tattoos to all of the nurses and has four on herself. We are still hopefull that we will get to leave on schedule.
Today our nurses Shannon and Mary gave Anna a stuffed Goofy and a Goofy t-shirt. They have gotten to know us pretty well. We will miss them!
*Pray for no more fevers. They may want to keep us longer for antibiotics. That's okay as long as we leave by Monday.
*Pray for me as I will have to take over her medications again. There are several new ones including her GCSF shots. She and I both dread the shots each day.
*Pray that we will be able to stay out of the hospital when we get home. The longest we have been out since the transplant is 5 days.
Trusting God,
Marlo

Friday, August 12, 2005 12:24 AM CDT

"Hope deferred makes the heart sick."

That is the verse that comes to mind this morning as I wait to see what will happen. We had a very bad night last night. Anna "spiked" a fever and she was up 12 times to go to the bathroom. (That doesn't leave a lot of time left for sleep!) I know this fever could mean another delay in our homecoming. As I cried in bed last night I remembered "Weeping may last for the night, but joy comes in the morning." It seemed like a long time until morning. I was thankful for our sweet nurse Beth who brought me water and kleenex and patted me and said she was praying for us.
Today Anna's heart rate is still up, but she is not going to bathroom as often. Her fever is under control with Tylenol and antibiotics. None of the doctors know where the fever is coming from or why she has to go to the bathroom all of the time. Please pray for God (the only one who knows exactly what is going on) to heal her of any infection.
Her liver numbers are looking good. Her staples are out. We are almost done with this round of chemo. There is a lot to be thankful for even if we don't go home Tuesday.

When I am down and , oh my soul, so weary
When troubles come and my heart burdened be
Then, I am still and wait here in the silence
Until you come and sit awhile with me.

You raise me up, so I can stand on mountains
You raise me up, to walk on stormy seas
I am strong, when I am on your shoulders
You raise me up...to more than I can be.
("You Raise Me Up", by Lovland and Graham)

More than I can be,
Marlo

Thursday, August 11, 2005 8:38 PM CDT

Please read Marlo's prior post for the days' events, but for those of you who check the site before bedtime prayers -- the last few hours Anna's heartrate and temperature have both been steadily rising. They've finally decided to call the resident and Marlo is going to ask them to call the the oncall physician as well. We're so close to homecoming that we're hoping to avoid any more bumps in the road. Please pray that they can control her temp and heart rate so she can finish out her chemo. This new protocol is really hard on her little body, especially with all the liver medication she's taking.

Grace,
Richard

Thursday, August 11, 2005 2:33 PM CDT

"On that day I will gather you together and bring you home again." (Zephaniah 3:20)

Another long day of chemo. They gave Anna some "happy" medicine this morning, so for a while she was singing and riding a tricycle around the halls. It seems to have worn off because she is weepy and tired again. She is sleeping right now. She has a new sore in her mouth that is giving her trouble. That is one of the side effects of her anti-rejection meds and the chemo.
I found out today that we will not be discharged until Sunday morning. That means 3 more nights here, 2 at the RM House and then home.
Anna will have her staples taken out tomorrow around 10am (that's 9am Oklahoma time).
Although I would love to have a big welcome back party when we get home, I'm afraid Anna's counts will be way too low to be around any crowds. We will start her shots this weekend, but it will take a week for her counts to bounce back. Hopefully she will be able to get out of the house a little bit by the 22nd.
Love, Marlo

Wednesday, August 10, 2005 11:42 AM CDT

"The Lord gives his people strength. The Lord blesses them with peace." (Psalm 29:11)

The room is peaceful now because Anna is asleep. When she is awake she is a bear. They say it is because of one of the anti-nausea meds. She hasn't eaten much today. All she wants is some garlic rolls from the local Italian restaurant. Luckily they deliver. Unfortunately you can't just order bread so we had to order some fettucini too. I guess we can skip the cafeteria for one meal!
Anna's GGT went down today! It was 238 yesterday and 213 today. I know I'm not supposed to watch the numbers so closely, but it was encouraging. Of course "normal" is around 30 so we have a ways to go.
I had a visit last night from another mom whose daughter had a transplant in March. They are still at the RM House because they can't go home to Nigeria. Whenever I feel far from home, or think I've been here a long time, I think about Edith and what she is going through. Her daughter Oni is the favorite around the House. She's spent half of her life there!
I have a departure time of 11:45 Tuesday. It feels so good to know that.
Love, Marlo

Tuesday, August 9, 2005 10:53 AM CDT

"Real trust in God is above circumstances and appearances."
(George Muller)

I am trusting that God will work all things for good even though Anna's GGT continues to inch up. The doctors said again today that we should be able to leave Tuesday. I know things could change, but for now we are excitedly making plans for next week.
Anna had 3 hours of chemo last night and woke up hungry. She had a pbj sandwich and a hot dog for breakfast. We spent the morning reading books and watching Dora. Tonight Anna will start 3 days of continuous chemo ("all chemo...all the time"). Last time she felt pretty yucky, but bounced right back once it stopped.
Wow, I had no idea the folks at Incredible Pizza were praying for us! Thanks for the fun night Richard and the kids had there this week.
Richard is trying to go back to work, but it's hard with three kids. Thanks to those of you who have helped him out. I can't wait to resume my role as his helpmate. Parenting is definately easier with two people to share the load.
Love, Marlo

Monday, August 8, 2005 4:42 PM CDT

Thank you for continuing to stand in the gap for us. I was not as alone yesterday as I thought I was. Mary and Kathy, some new friends who had a family member go through this a few years ago, came to visit and brought a care package. Later pastor Mal and his wife Mary from a local Baptist church came by to encourage and pray with me. (They will be bringing a McDonalds cheeseburger when they come back next time--at Anna's request.) Then our friend/nurse Mary came to visit after her shift. She had hugs for Anna and me. We are living in the height of hospital luxury now that we have moved to the oncology/isolation unit. It is so much quieter than the busy surgical floor. We are especially thankful for the love seat in our new room. I hadn't realized that I had missed having a couch. I know it's a silly thing, but now Anna and I can sit next to each other and read books (without being in bed). Anna took her nap there today and was making her doll a bed on it when I left a few minutes ago. And best of all it makes out into a full sized bed. I enjoyed the extra sleep space until 4am when Anna woke up and said "You said you would sleep with me."
Anna had a great day. We played in the playroom and she got to drive a motorized jeep around the hall. We are still waiting for the chemo that was supposed to start this morning (it's almost 6pm). I'm trying to be thankful for the extra time for her body to recover instead of being anxious about starting later than I had planned. Hopefully we will still be discharged on Saturday, have the staples out on Monday, and come home on Tuesday.
Pray---that the GGT would start to come down
---for a flight home
---for minimal effects from the chemo
Thanks for not giving up on us even though the road is long.
Love, Marlo

Sunday, August 7, 2005 10:21 PM CDT

Unless something changes, this will probably be a very difficult week for Marlo and Anna. Anna's 5th round of chemotherapy is scheduled to begin tomorrow but there are a couple of issues that we're concerned about. She is still battling high blood pressure though the medication is keeping it under control. We are also concerned about keeping her hydrated enough. With the chemo also comes the daily shots to keep her white cell count high enough. And finally, one of her liver numbers still hasn't come down to a normal level. The doctors have assured us that it is the last one to come down and they are not overly concerned yet, but, that is what they said after the transplant. I know that children are remarkably resilient, but we feel like we're pushing her little body to the absolute limits and just don't know how much she can take.

Anyway, if all were to go exceptionally well this week, then Marlo and Anna could possibly come home early next week. Otherwise, we're in the same situation as we are today. We're not sure what to expect each day. We truly believe that the doctors have done (and continue to do) all they can do, but that the ball is entirely in God's court. We are waiting for Him to move in His time.

Waiting on His Grace,
Richard

Saturday, August 6, 2005 8:30 AM CDT

God is able to make you strong (Ro16:25) He will keep you strong right up to the end. (1Cor1:8)

Today is another hard day as we say goodbye to Grammy. I am clinging to a verse that I read yesterday, "Even if my father and mother abandon me, the Lord will hold me close" (Ps27:10) If I knew when we were leaving it would be easier. Today all of Anna's numbers look good except for one that is inching up. It's the same one we've had trouble with all along. I know that we can't leave until that is resolved. I also know that things can change very quickly and tomorrow it could start going down. Pray that we will stay strong up to the very end. Anna has started saying that she wants to go home to see Daddy. She hasn't talked much about home before now.
Thank you for the encouraging notes. I appreciate each one. I also appreciate those of you who are looking out for my family in OKC.
Love, Marlo

Friday, August 5, 2005 10:20 AM CDT

The psalmist said, "My eyes are straining to see your promises come true. When will you comfort me? I am...exhausted with waiting." (Ps. 119:82,83). Even as we rejoice in a good AFP, I battle anxiety over Anna's liver numbers. Sometimes I don't even want to know, just wanting to hang on to the last piece of good news I have and not wanting to spoil it with the any bad news. Two of Anna's numbers are down today, one (the critical one for bile strictures) stayed the same. It needs to go down. I'm trying to "keep faith" and keep my eyes on God's promises to us, but some days are harder than others.

Marlo's mom leaves for home tomorrow and Marlo will be there alone with Anna for the next week. Ask the Lord to prepare her, strengthen her, and make the best use of that time. Even with all that's going on in Delaware, Marlo found time to send a friend of ours on a "secret mission" to provide me with enough groceries to stock our pantry for the next month. Our kids thought it was almost as good as Christmas ("Cookie Crisp! Mac-n-cheese! Peanut Butter! Oh boy!").

Seeking His Grace,
Richard

Thursday, August 4, 2005 5:10 PM CDT

I'll let Marlo tell you more about it when she has time, but they are out of ICU and in a regular post-op recovery room. They moved them out at midnight! (I guess they needed the ICU room). In any event, Anna's blood pressure and heart rate are down and her liver numbers were trending down today.

We are still scheduled to start the 5th round of chemo on Monday and then try to come home next weekend (or perhaps early the next week). Of course, nothing is absolutely certain and Anna still needs to fully recover from the surgery, get through chemo and keep her liver numbers down. We have learned to take nothing for granted but to pray about everything.

Grace,
Richard

Wednesday, August 3, 2005 12:40 AM CDT

We are still in the ICU, but hopefully it won't be too much longer before they get Anna's blood pressure under control. This morning I sat by her bed and watched it keep going up and up. They had given her something earlier, but it wasn't working. When it got to 177/137 I told the doctor that if they didn't give her something soon, that they would have to give me something for my BP. They switched medications and now it is going back down. Of course we would rather find the source than treat the symptom, but we had to do something. Yesterday they did a chest x-ray, abdominal ultrasound, echocardiogram, inserted and NG tube, and gave her different supplements in her IV (bicarb, magnesium, and albumin)--all were attempts to figure out what was wrong. Hopefully her body will recover soon, but until then we will use the BP medication.
It was good during the midst of everything yesterday to get the AFP results. Of course I thought, "Great, we got rid of the cancer and now she is going to have a stroke." I'm a little more hopeful today :)
I met another little girl with hepatoblastoma yesterday. They are attempting to do a resection right now. Hopefully they can avoid a transplant. I just went and talked with her mom in the waiting room. She is here by herself. It made me SO thankful for the support I have had.
I better head back to the land of constant beeping (ICU).
Love,Marlo

Tuesday, August 2, 2005 1:39 PM CDT

Quick update: Anna's heart rate and blood pressure are still way too high, but the latest theory is that is due to excessive anti-rejection medication that has accumulated in her system. They're going to skip a dose and watch her until it comes down.

The Big News of the Day is that her AFP is 11!! We are really rejoicing at this news since a "normal" AFP is 10 or less. This is a reduction of more than 50%, which is what they normally expect each week after transplant. It's an answer to the prayer of so many (myself included).

Thank you for praying and watching and waiting with us. It's a slow, painful process and we are forever indebted to those who are walking this road with us.

Refreshed by His Grace,
Richard

Tuesday, August 2, 2005 7:57 AM CDT

Anna is still in ICU. What was supposed to be about a 4-hour post-op stay turned into an overnight stay and at this point we're not sure when she'll move back to her room. For some reason, Anna's heart rate and blood pressure are extremely high and the doctors haven't yet figured out why. They have to get both down so we can move out of ICU and move on with the recovery.

Marlo is operating on very little sleep at this point and Anna is not feeling well either.

Awaiting His Grace,
Richard

Monday, August 1, 2005 1:55 PM CDT

Please read Marlo's prior post if you haven't yet. But Anna is now out of surgery and in the ICU. The doctors said she came through the surgery fine and they decided to repair both ducts while they were there. One was totally blocked and one was showing some narrowing. They believe this will be a long-term resolution though (of course) there is always a chance of recurrence albeit pretty low.

Marlo was there when Anna woke up. Anna's first words were, "Are they done?" She'll be in ICU for about 24 hours, then move back to her regular room. Recovery time is anywhere from 7-10 days (hopefully shorter!). Marlo's mom has also arrived safely.

Assuming a healthy recovery from this surgery, the next key decision is whether to do the 5th round of chemo there or here. It all depends on how and when she recovers from this surgery. So please keep praying for those liver numbers to go down and a super-low AFP. Many, many thanks to you all.

Grace,
Richard

Monday, August 1, 2005 8:27 AM CDT

Anna is in surgery. This has been our theme song this weekend. (Thanks Stacy for the new CD.)

Life can be so good,
And life can be so HARD,
Never knowing what each day
will bring to where you are.
Sometimes I forget,
And sometimes I can't see,
That whatever comes my way,
YOU'LL BE WITH ME.

My life is in your hands,
My heart is in your keeping.
I'm never without hope,
Not when my future is with you.
My life is in your hands,
And though I may not see it clearly,
I will lift my voice and sing
Because your love does amazing things,
Lord I know my life is in your hands.

NOTHING IS FOR SURE,
AND NOTHING IS FOR KEEPS,
All I know is that your love
will live eternally.
So I will find my rest,
And I will find my peace,
Knowing that you'll meet my every need.

God is meeting our needs. Anna and I slept well last night. I've learned that it's best NOT to know everything that is going to happen each day. Just as I only tell Anna what she needs to know, when she needs to know it---God is shielding me from being overwhelmed with too much information by only telling me what I need to know, when I need to know it. I bear the burden for Anna of knowing more than she knows, and God bears that burden for me. What I do know is that I can rest in him and he will walk me through whatever comes today.
Love, Marlo

Sunday, July 31, 2005 8:38 PM CDT

The apostle Paul once wrote to his friends about his hardships, "We were under great pressure, far beyond our ability to endure, so that we despaired even of life... But this happened so that we might not rely on ourselves but on God, who raises the dead. On Him we have set our hope that he will...deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." (2 Corinthians 1:8-11 (excerpts). Though our hardships still pale in comparison to Paul's, his words seemed appropriate.

Thank you for your many prayers and thoughts. Anna's surgery is at 7:30 in the morning and will be about 2 hours if all goes well. I'll update the site as soon as I know anything new.

Marlo's mom will arrive tomorrow after lunch. Will got safely home today.

Marlo and I both have had a sense of peace today about whatever happens next.

Leaning Hard on Jesus,
Richard

Saturday, July 30, 2005 9:37 PM CDT

God once said, "Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west." (Isa. 43:5). Though He was talking about the "children of Israel", He is the same One who has the power to bring my children together from all directions. We have really been scattered this summer and yet all the kids have been remarkably resilient. Still, it's been a long time since we've all been around the same table. I'll never think of dinnertime the same way again. If your family is all together today or tonight, under the same roof, and around the same table, be thankful and cherish the moment(even if it's a little chaotic!).

Anna surgery is scheduled for sometime Monday, though we don't know when. It will be around two hours and she'll have a 7-10 day recovery period just as with any abdominal surgery. We are very thankful that she does not have any infections and is overall in good health (relatively speaking). We hope and pray that the surgery will repair the duct once and for all and then she'll have a quick recovery so we can get on through the chemo. Marlo's mom will be there on Monday and stay the rest of this week. Please pray for her safe travel and strength. Will got home today and I'll go pick him up tomorrow. Now we are 4 -- I just need two more.

We'll also get another AFP Monday. Please, please pray that it keeps going down by lots and lots.

Thanks again for your many words of encouragement as we tread these deep waters. It's scary and we still don't know what each day will bring. It's all we can do to cling to Jesus each moment and trust that He will bring us through this. The late Rich Mullins wrote a song that's been running through my mind -- "Hold me, Jesus. I'm shaking like a leaf. You have been King of my glory; won't you be my Prince of Peace?"

Standing Only By His Grace,
Richard

Friday, July 29, 2005 7:00 PM CDT

Anna is out of day surgery. The attempt to put in a stint was unsuccessful. They will have to correct the blockage surgically. We do not have a date but it will most likely be very early next week. We will write more as we learn more.

Richard

Friday, July 29, 2005 4:21 PM CDT

Anna went into day surgery about 3:45 our time to have her stint placed. We're not sure exactly how long it will take. For more information, see the preceding post.

Richard

Thursday, July 28, 2005 8:26 PM CDT

"My soul is weary with sorrow; strengthen me according to your word." (Psalm 119:28)

Two pieces of discouraging news today: 1. The CT scan showed there was a bile duct stricture (blockage). In a way, this is an answer to prayer because if there was a problem, we wanted them to find it. Tomorrow, they will put a stint in for about 6 weeks to try and resolve the problem. We will need to return to Delaware after that time to see whether or not the problem has been solved. If not, she will need to undergo another surgery. 2. Instead of just two rounds of chemo post-transplant, we will be doing 4. This is because Anna's AFP isn't coming down fast enough, although it does continue to drop. The rate of decrease being less than they expected is an indicator that there are still active cancer cells in Anna's body. This chemo regimen is a lot harder on Anna that the pre-transplant version. She will have the 2nd round of chemo there next week then return home (possibly) on August 11. Anyway, while we had hoped to be near the end of this journey, it seems that there are still some very difficult days ahead.

Still seeking His Grace,
Richard

Wednesday, July 27, 2005 12:31 AM CDT

We are still in the hospital. Anna will have her CT in the morning and then we will be discharged. Shonda and Will are here and he and Anna are fighting like brother and sister. I'm glad she has someone to fight with besides me! They are having fun coloring, putting on tattoos, and making the bed go up and down. Will and I have snuck out for a couple of hours while Aunt Shonda stays with Anna.
If they can see a stricture on the CT they will do surgery as early as Friday. Lots of unknowns today, but Anna feels good and we are making the best of it.
Love, Marlo

Monday, July 25, 2005 1:33 PM CDT

My brain can't think of any inspirational thoughts to open with and I'm here in the RM Family Room at the hospital so I don't have my journal.
We were at the ER until midnight and they couldn't figure out what was wrong so they sent us home. Anna could only sleep for minutes at a time because of the pain. Finally about 7am the pain stopped. We went to our appointment at 8:30 and they admitted us for "rehydration". They were going to do a CT scan, but they can't until she gets rehydrated because the contrast they inject could damage her kidneys if she were dehydrated.
So now we are back in our original room. Anna is sleeping soundly. Stacy is here for another hour and then she will hop a shuttle for the airport. I was so thankful to have her with me last night. Shonda and Will arrive tomorrow. I hope we do not have to be in the hospital for Will's entire visit.
Pray for Richard and his parents today. His grandfather's wife passed away this morning and they are trying to find the best place for his grandfather to live. They have a lot to deal with this week. I'm thankful that Richard is there to help. I wish I was there too. Gerona was a great lady and I will miss her.
Love, Marlo

Sunday, July 24, 2005 7:29 PM CDT

I know that some of you check the latest news before you retire in the evening so I want to give you some partial information. Marlo took Anna to the emergency room of the hospital tonight. At dinnertime, Anna began complaining of lower back and abdomen pains. She appeared to be in a lot of pain so Marlo called the surgeon and he told Marlo to take her to the ER for evaluation. As of about an hour ago, they were still waiting to see what if anything would be done, but Anna had calmed down and was trying to go to sleep.

Please pray that the doctors will know what to do, if anything, and that it will be nothing significant. Also please pray for Marlo as it seems we cannot go more than a few days without a trip to the hospital for one reason or another. Pray for her strength, patience and rest in this circumstance. Also, Marlo has to keep Anna on her scheduled medications, regardless of where they are. We are thankful that her friend, Stacy, decided to stay an extra day and is still with her this evening. I'll update the post as soon as I have additional information.

Blessings, Richard

Saturday, July 23, 2005 3:27 PM CDT

We are having a restful, lazy day. Having the weekend off from the hospital is great. Anna's white blood cell count dropped really low so she is not supposed to be in crowds, but we did get away to "Delaware's finest Mexican restaurant" for lunch. (Actually it's the only one I've seen except for Taco Bell.) It just happened to be next door to a little candy shop in which the three of us enjoyed browsing (and buying). We returned to watch a movie in the RM House theater. So it's been a happy day, with only minimal weeping and gnashing of teeth at the medicine times (8, 10, 12, 2, 4, ...) Anna and I are both gathering our courage for the next shot at 5 o'clock. I'm thankful that Stacy is here to help Anna hold still. Thanks to our helpful husbands she will be staying an extra day to be able to help with the CT scan. They didn't ask Stacy if she wanted to stay, but she is a good sport and is willing to give up one more day with her family for us.
Until next time...
Love, Marlo

Friday, July 22, 2005 8:01 PM CDT

Okay, ye olde college roommates, you don't have to tell embarassing stories in the guestbook. Now I will have all sorts of requests to sing "I Am Woman".
Tonight at the Ronald McDonald House they served.... McDonalds! We chose to forgo the cold greasy fries for some fancy veggie pizza at a nearby restaurant. Anna insisted on ordering caramel cheesecake for dessert. It's too bad she could only eat 3 bites before she was full. Stacy and I had to finish it off.
So you see, in spite of the lab reports, we are alive and well in Delaware. I am not looking forward to Monday because the CT scan is at 1pm and Anna can't eat anything for 8 hours before that. (She is always hungry because of the steroids.) Pray for time to pass quickly.
We've almost made it through another day. I have to wake Anna up at 10pm for her last 2 meds. Pray that it will get easier for her. One of the kids here told her to hold her nose when she swallows, so she tried that tonight. I think it helped!
Love, Marlo

Friday, July 22, 2005 4:44 PM CDT

Some of Anna's numbers were down today (good) but one was up significantly (which is bad). They have decided to do a CT scan to see if they can determine what's going on. While we want everything to be okay, if there is a problem, we want the doctors to be able to identify it and decide what to do about it.

We had hoped at this point to be seriously planning when Anna would be able to return to OKC. But frankly, things are not going as I had planned and we are simply living day to day.

We will have a new AFP on Monday, which will hopefully have dropped significantly enough to give us confidence that the cancer is gone.

Thanks to you who stand in the gap for us daily. We really need it.

Richard

Thursday, July 21, 2005 8:16 AM CDT

Someone warned me that the first six months after transplant would be a roller coaster and they were right. Tuesday we were up and Wednesday we were down. Yesterday was really hard. Thank you to Kristn P. who called and left a message reminding me to trust in God and not in doctors or numbers. Then I read a little book of verses that my friend Pamela gave me...."Do not fear! Stand still and watch the deliverance of the Lord...the Lord will fight for you...." (Ex. 14:13-14) So I am standing and watching. I somehow managed to get our stuff back to the RM House, give Anna her shot, and then get her back on the shuttle (she was thrilled with the bus ride and asked if we could do it again.) Today I have to go to the pharmacy, pick up our rental car, and go to the airport to get Stacy. In between I have to give Anna her 14 medications at the right times. Some of those are 3 and 4 times a day adding up to 27 doses per day!
I am thankful for a good nights sleep. We are both happier today. Anna said, "This is a safe place." (Wait till she see that I have to give her a shot later today.)

Strength for today and bright hope for tomorrow,
Marlo

Wednesday, July 20, 2005 10:15 PM CDT

Anna's liver numbers were up today. They tried to do an ultrasound but did not get a good picture because Anna was too upset (she absolutely hates the ultrasound). Nonetheless, Marlo and Anna were discharged from the hospital back to the RonMcD House, which is great news. They can get a few nights' sleep without the nurses coming in every few hours. Marlo's friend is flying out tomorrow so please pray for her safe arrival. Also, please pray for a time of refreshing and renewal for Marlo and Anna. The last week or so has been incredibly draining on them both and they need renewed strength. The docs added several more medications (plus the daily shots) for Marlo to administer and it is a full-time job keeping up with the all the doses and times.

We are trying to get a date to return to Oklahoma City (hopefully the first week of August), but frankly, there just seem to be too many unknowns still. Anna's liver numbers really need to stabilize, and quickly, so that we can time our return to OKC in such a way as to stay on track for the next round of chemotherapy. There are so many things completely outside of our control. Please pray that the doctors would have wisdom in resolving the issues with Anna's liver numbers. And continue to pray that the cancer would be gone.

Grace,
Richard

Tuesday, July 19, 2005 8:39 PM CDT

"don't get tired of doing what is good..." (Gal. 6:9)

Richard just added an update for today so look at it for the details of what is going on right now. I just wanted to let you know that I haven't written for a few days because I didn't want to. I didn't want to be inspiring or encouraging. I just wanted to go home. As my mom and Audra have come and gone, it has felt like Anna and I will never leave here. I lost hope of going to the RM House--much less Oklahoma. I read the guestbook tonight and was encouraged by you. I'm so glad that a little story that helped me understand God's love has helped someone else (Shelley's dad). I want to continue to share that with others--whether I'm in Istanbul or Delaware. Just know that the strength that you read about, or the nurses here see, is not my own.
Today I am thankful for nurse Mary. She drove my mom to the pharmacy last night when she got off work. She stayed with Anna today when I went to the cafeteria. While I was gone they accessed Anna's baby's port and were busy injecting pretend medicine into the tubes. She also gave Anna her first GCSF shot and trained me in how to do it.
Love, Marlo

Tuesday, July 19, 2005 8:26 PM CDT

Anna is in good spirits today. Her liver numbers are down a little (a good thing) and she is through with this round of chemo. She even talked to me on the phone for a few minutes tonight. If all goes as planned, they will return to RMH tomorrow sometime (probably late in the day). Marlo will have to begin giving Anna daily shots to keep her white cell counts up. As you might imagine, this will be no easy task.

I would continue to ask for your prayers that God would entirely remove this cancer from her body. While the surgeons are confident that they removed all the actual tumor mass, the results of the post-surgery pathology report indicate there may still be free-floating cancer cells in her body. This is why we are doing the additional rounds of chemo and this is why her AFP score is so important -- it is a measure of cancer activity. It has improved significantly since diagnosis, but we're still not in the "normal" range yet.

Marlo's mom and Audra were delayed in returning home because of bad weather at one of their stops. They may be stuck in Memphis for the night so please pray for their peace and safe return.

Job lamented about God's seeming absence during his time of suffering, "But if I go to the east, he is not there; if I go to the west, I do not find him. When he is at work in the north, I do not see him; when he turns to the south, I catch no glimpse of him. But he knows the way that I take... (Job 23:8-10). In other words, we cannot always see God at work, but He always sees us.

Richard

Monday, July 18, 2005 8:39 PM CDT

Anna's 5th round of chemotherapy should end today and tomorrow she'll be on medicine that is supposed to help minimize the side effects of the chemo. Marlo's mom and Audra are leaving tomorrow afternoon so please pray for their safe return. Marlo's friend, Stacy, is due to arrive Thursday and will be able to stay through the weekend. We hope that Marlo and Anna will be able to return to the RMH on Wednesday for some R&R. We've learned however not to expect too much beyond whatever today holds.

Anna's AFP (the meaure of tumor activity) was 66 today. We expected that it would be more in the 40s or 50s. Please pray that this would not be significant or indicate that somehow there is still active tumor somewhere.

Me and the boys are doing alright in OKC. We are well provided for but of course miss Marlo and the girls like crazy. We look forward to the day when we're all under the same roof again.

Blessings,
Richard

Saturday, July 16, 2005 7:29 PM CDT

"Don't you realize how kind, tolerant, and patient God is with you?" (Romans 2:4)

I am trying to remember this verse when Anna is being unreasonable. How many times do I complain to God when I don't get what I want, when I want? I treat him the same way Anna treats me. I am learning to be patient and wait for what he gives me, knowing that it will be the best thing for me.
Today was difficult. We had to get another IV in Anna's arm because we needed one for the chemo and one for the hydration fluids and antibiotics. The IV in her arm is really bothering her. I hope the next couple of days will pass quickly. We are planning to be discharged on Wednesday.
Love, Marlo

Friday, July 15, 2005 8:02 PM CDT

I've been to a lot of places
And I've seen a lot of faces
But there've been times I 've felt so all alone
But in my lonely hour, Yes those precious lonely hours
Jesus let me know that I was his own.

Through it all
Througth it all
I've learned to trust in Jesus
I've learned to trust in God
Through it all
Through it all
I've learned to depend upon his word.

I thank God for the mountains
I thank him for the valleys
And I thank him for the storms he's brought me through
For if I'd never had a problem,
I wouldn't know that he could solve them
And I'd never know what faith in God could do.

("Through it All", by Andrae Crouch)

An old song, but one with new meaning for me. I was listening to it this morning and thinking about all of the new faces I have seen here. It seems like there is someone new coming in every hour. If it's hard on me, I can't imagine how Anna feels having all of these strangers come and look at her belly, listen to her heart, etc. I guess I can forgive her for her loud protests (ie. screaming). The most trying part of this phase of treatment is that she is hungry, but doesn't know what she wants and doesn't want anything I suggest. I'm just thankful that she is still eating (and keeping it down!) I'm also thankful for this nice quiet floor. If you have to be "locked up" it's not so bad. At least they have "Sonic" ice, free Diet Coke, and all the pudding you can eat.
We have finished one of our chemos and are getting ready to start the second one in a few minutes. This will be the worst day--having them back to back. Pray for rest for both of us. It's harder to sleep on this unit because they check on you more often. Hopefully we will be DC'd to the RM House Tuesday (the same day Mom and Audra leave).
Thank you to everyone who is helping take care of my boys back home.
Love, Marlo

Friday, July 15, 2005 10:03 AM CDT

Anna started chemotherapy yesterday and has lost her appetite and is generally feeling a little worse than she had been. The chemo regimen runs through Monday or Tuesday of next week. Her liver numbers were up this morning but the doctors suspect that is a result of the chemo and not anything new. Assuming no intervening issues, they are going to finish this round of chemo and then start focusing on her liver numbers again. We will be very glad to get this round of chemo behind us. That will mean that we probably just have one more chemo round left. Although I want her liver numbers to be going down, I take the doctor's assessment as good news overall. I was concerned they would either stop the chemo or want to do another biopsy/ultrasound. Of course, ultimately, we want whatever is best for Anna and are asking God to give the doctors wisdom in every decision they make.

Quick poll: Is anyone else having trouble getting the pictures on this website? I've had a couple reports of the pictures not coming up and want to report it to the "webmaster" if it's a problem. Thanks.

Thursday, July 14, 2005 9:33 AM CDT

I'm pleased to report this morning that Anna's liver numbers started going down again and so they will NOT do a biopsy this morning. This is great news and and an answer to prayer, not only because it is a good sign for her liver function, but it saves Anna a lot of pain and stress. Thanks for your prayers and encouragements. Anna should start chemo this afternoon as planned and continue through next Monday. At that point, she should be discharged back to the Ron McD House, assuming her liver numbers continue trending down and stabilize.

Grace,
Richard

Wednesday, July 13, 2005 8:47 PM CDT

Jacob and I (Dad) are back in Oklahoma City with Will, but it won't seem like home until we're ALL home. Another fun day for Anna and Audra (albeit in the hospital) -- they went to a party whose chief end seemed to be the distribution of large quantities of toys to all the children present. I'm so glad that they've had a couple of days of refreshing before the week ends.

Tomorrow has the makings of a difficult day, although we've learned that this is a "dynamic" situation. Anna's liver numbers did not go down today (although they didn't go up), so they plan to take more blood at 4:00 a.m. tomorrow morning. The point of taking it so early is to get the results back early enough so that if they aren't satisfied, they'll have time to do a biopsy first thing in the morning. Then, assuming that the biopsy doesn't change any plans, they are ready to start Anna's next round of chemotherapy tomorrow afternoon -- which will last for about 5 days in the hospital. Please pray for: 1. Good liver numbers, 2. Protection from the permanent side effects of the chemo, 3. Peace and strength for Anna, Marlo, Audrey (Marlo's mom), and Audra.

There are so many "ifs" -- if this, then that. If that, then this. Never in my life have I been in a situation where I was in the dark every step of the way. Isaiah, the Hebrew prophet, said, "If you are walking in darkness, without a ray of light, trust in the LORD and rely on your God. But watch out, you who live in your own light and warm yourselves by your own fires. This is the reward you will receive from me: You will soon lie down in great torment.(50:10-11). Confession time -- in retrospect, I've lived much of my life trying to live in my own light and warming myself by my own fires. Good education, great wife, healthy kids, comfortable job, nice house in the suburbs. I never knew how dark the darkness could be. And yet, somehow, in God's perspective, its better this way.

Blessings,
Richard

Wednesday, July 13, 2005 10:18 AM CDT

Weeping may last for a night, but joy comes in the morning.

Audra has certainly brought joy to our room this morning. The girls are so happy to be together. Today they are wearing matching shorts sets from Grammy. We walked down to the gift shop and got suckers, then went to look at the fountain. Now the girls are snuggled in bed together watching "Little Mermaid". Joy!
Anna's counts didn't go up or down, but they think it might be because they discontinued one of her antibiotics a couple of days ago. They are going to start it again today to see if it makes a difference.
We should have a chemo plan by this afternoon. The doctors here are calling the "expert" in Los Angeles to get his opinion. Since Anna's hearing has been affected, they may decide to change to a different drug.
I am learning that we must find our joy in trusting God and not in our circumstances. The boy next door to us went to OR last night to get a liver, but the surgery was aborted when they found that there was cancer all over his stomach. What do I say to that Dad when I see him? You have no idea the human drama that is unfolding in your local pediatric hospital. My dad went and got an application to volunteer at his local RM House--kudos to you Dad!
On a lighter note...Is there anyone who could take my kids to a water park? That is what Jacob said he still wants to do before the end of summer and that's too much for Richard just yet.
Love, Marlo

Tuesday, July 12, 2005 10:55 AM CDT

I visited with Adrienne's family this morning. I won't go into detail, but wanted you to know that they found the problem and fixed it. She is resting comfortably. Thank you for caring about someone you don't know.
We are anxiously awaiting Grammy and Audra. They should be getting their luggage about now. Anna and I just walked down to the gift shop and bought 2 tootsie rolls--one for her and one for Audra.
Anna's labs this morning were not great. Her numbers didn't go down. If they stop going down we will have to do another ultrasound and possible biopsy. That was not what I wanted to hear, especially since Richard just left. Then I received a phone call from a friend in Minnisota who just called to remind me that God is my security and that sometimes waves can be really big (up to 120 feet), but that God is my anchor. Please pray that the numbers will go down tomorrow. But even if they don't, God is in control and his plan is perfect.

You are my hiding place
You always fill my heart
With songs of deliverance
Whenever I am afraid
I will trust in you

I will trust in You
Let the weak say
I am strong
In the strength of the Lord
(You Are My Hiding Place, by Michael Ledner)

(Thanks Carol for the music this morning.)
Love,Marlo

Monday, July 11, 2005 9:26 PM CDT

I just wrote about Anna, but since then I have learned that I little friend of ours was just taken in for emergency surgery. Pray for Adrienne. She went home from the RM House yesterday and had to be rushed back here today in an ambulance from her home 4 hours away. They were in the room next door to us at the RM House and now Adriennes room is right across the hall from us in the hospital. Pray for a good outcome--that they can find out what is causing the bleeding and the pain and then fix it.
Thanks.

Monday, July 11, 2005 8:00 PM CDT

I kissed Jacob and Richard goodbye tonight. They are leaving early in the morning. Saying goodbye would have been a lot more difficult if my mom and Audra weren't arriving tomorrow. Anna and I still feel a bit "left behind" as we wish we were going with the boys.
Anna had a good day today. Uncle Howard sent her 2 dollars so she wanted to go to the gift shop. She picked out a candy bar, then we snuck out to the playground to eat it. Last week we had a security tag that set off an alarm if we tried to go outside. They must have forgotten to put one on when we were readmitted because we were able to get out the door unnoticed. She was wearing Strawberry Shortcake pajamas and a surgical mask. We tried to take a picture but our camera was out of batteries.
The docs have decided that we will start chemo in the next "couple of days". I'm not sure exactly when that is. It will involve moving to the cancer unit. After 3 days of chemo they will let us go back to the RM House--still on IV antibiotics. They will give us some sort of pump and I will be in charge of hooking her up every few hours. They have started training me on how to do that. It's a little intimidating but I'm sure it will get easier.
Until next time...
Love, Marlo

Sunday, July 10, 2005 7:59 PM CDT

"The terrible storm raged unabated for many days, blotting out the sun and the stars, until at last all hope was gone."
(Acts 27:20)

The above verse does not describe my feelings. I still have hope that one day we will return home. I still go outside and see the sun and the stars. I was reading it though and wondering if that is how Anna feels. She has no understanding of time. Telling her that we will go home "someday" or even "in a few weeks" means nothing to her. Pray that she will not lose hope even though the storm for her has raged unabated for many days. We are both getting tired of the hospital. Pray that our room would be a refuge and a place of peace.
Love, Marlo

Saturday, July 9, 2005 8:59 PM CDT

"But do not be dismayed, for here is your opportunity to have endurance and faith." (Revelation 13:10)

I am trying to see our current situation as an opportunity and not a disaster. After all, when the above verse was written it was referring to people being put in prison and killed. I'm sitting here on a soft couch with enough snacks to put me in a sugar coma. I cannot complain and yet I do! (Father help me to see this as an opportunity to have endurance and faith. Help me see the good around me. Help me see you.)
Anna seems to be fine. Her numbers went down today instead of up so I guess what they are doing is working. It is hard to keep a three year-old on steroids happy all day in a hospital room, but we are trying. I'll be glad when I can go back to being my old "mean" self. (At home when the kids ask for fruit loops after they have gone to bed, I just say no.)
Many of you have asked how Richard is feeling. (I told him to write more about his feelings next time.) He looks okay to me. He can't lift anything and he gets tired, but he doesn't complain of pain.
The IV is dinging and the nurse hasn't come so I'm off to find her.
Love, Marlo

Friday, July 8, 2005 8:17 PM CDT

Lots to report tonight....

The results of the biopsy showed that Anna has some type of infection/inflammation in her liver. It is probably the result of the manner in which they had to hook-up her liver during the transplant and the infection can be treated with a 10-day i.v antibiotic treatment. So we were re-admitted to the hospital this afternoon.

We had planned to start the next round of chemotherapy on Monday but this little detour will probably delay that at least a few days. We'd rather not have ANY delays but of course want to do what's best for Anna and make sure she's stable before starting chemo. They've also determined that Anna has some high-level hearing loss from the chemo -- so far it hasn't affected her functionality (we didn't notice anything different) and there is a risk of further loss with additional chemo. We need to do the additional chemo however to make sure that we destroy any microscopic cancer cells floating around her system.

Jacob and I have delayed our return to OKC until Tuesday to be with Anna and Marlo a little longer. Then Marlo's mom and Audra are due out next week.

Overall, the situation is fluid and seems to change daily. In short, here are the key issues we're facing (today): 1. Get Anna's liver numbers to start going down, 2. Beat back this infection, 3. Start the right course of chemo that will have maximum effect on any remaining cancer without too great a risk of additional side effects (like hearing loss). And of course, that Anna's body will continue to accept the new liver and not have any structural issues (like bile duct blockages/narrowing).

Sorry for all the detail but I know some folks like to pray very specifically. Jacob is still having fun and we're going to try to tour Philadelphia before we leave town next week.

Grace and Good Night,
Richard

Friday, July 8, 2005 8:08 PM CDT

"They cried out to God during the battle, and he answered their prayer because they trusted in him." (1 Chron. 5:20)

We were doing some crying out today. We came this morning for some tests and ended up being admitted. Anna broke my heart when she said, "But you said we were going home!"(RM house) The biopsy showed that there was either a blockage or an infection. We had another ultrasound to rule out any blockage. Now we are on 10 days of IV antibiotics. We are not sure how this will affect her chemo schedule.
Richard changed his ticket so now he will be flying home on Tuesday instead of tomorrow.
The transplant team has assured us that this is only a "bump" in the road so we are not worried. It is just disappointing and tiring to be admitted again after only 3 days of "freedom". We are thankful for good nurses today, a good ultrasound (there was a chance she would need surgery if there was a stricture in the bile duct), 2/3 of our family being together for dinner, the Salamys and Scott getting safely home, a rainy day--a good one to be inside a hospital, and we are very thankful for all of the prayers on our behalf.
Love, Marlo

Thursday, July 7, 2005 1:29 PM CDT

Marlo and Anna are over at the hospital getting an infusion of one of Anna's medicines. While there, we were told that all three of Anna's key liver numbers are up today, causing some concern. In order to figure out what is going on, they are going to do a liver biopsy this afternoon. We won't know the results until tommorrow. We also have more pre-chemo test scheduled tomorrow.

We are trying to stay peaceful in the midst of this process and not become too alarmed at any "bumps" in the road to recovery, but it's hard (at least for me, Richard). Please pray for our peace and for good results from the biopsy.

It's been so much fun to have Jacob here -- he has been so patient waiting around at the hospital, reading, watching tv. It makes me miss the other kids that much more.

Richard

Thursday, July 7, 2005 10:59 AM CDT

As I watched the news coming from London this morning, it made what we are going through here seem small in comparison. At times like these all we can do is "fix our eyes on Jesus, the author and perfector of our faith."

Today we were at the hospital early for tests. When they were over, Anna wanted a hamburger from McDonalds. Unfortunately it was only 9:30am and they were still serving breakfast.
We are headed back to the hospital in a few minutes for a 2 hour infusion of a medicine I can't spell or pronounce. She will have to do this once a week for 6 weeks.
Love, Marlo

Wednesday, July 6, 2005 4:27 PM CDT

Dear Friends,
We have had a restful day. I was able to get up before everyone else and have my quiet time and go for a walk. The hospital is located on the duPont estate so there are lots of trees and a nice road around the grounds.
We took Anna for a hearing test after breakfast. She did not want to go back to the hospital, but settled down during the testing. She does have a high frequency hearing loss. Pray that it won't get any worse with the two more doses of Cisplatin that we have scheduled.
Tomorrow we start at 8am with labs, Echo, EKG, and staples removed. Friday we have a kidney function test that will last all morning.
I drove Dick and Phyllis to the airport this afternoon. They have been a great support the last two weeks. We are so glad they were here.
Thanks for all of the cards and care packages. It's fun to get mail.
Love, Marlo

Tuesday, July 5, 2005 5:08 PM CDT

"I lay down and slept. I woke up in safety, for the Lord was watching over me." (Psalm 3:5)

I have spent the last week sharing a hospital bed with Anna. I did lay down and sleep in between meds, blood pressure readings and temperature takings--and oh yes, the 6am weigh-ins. We are both glad to be back at the RM House tonight!
Today we met with the oncologist and discussed the next step. We will be admitted on Monday for three days of chemo.
Before that we will have blood tests, a two hour infusion of medicine, EKG, hearing test, kidney function test, and her staples removed. So even though we won't be sleeping at the hospital, we will be there a lot.
Jacob and Scott arrived safely. Scott, Dick and Phyllis will be leaving tomorrow. Pray for safe travel for them.
Love, Marlo

Monday, July 4, 2005 9:45 AM CDT

Happy 4th of July!

We are waiting for Scott and Jacob to get here later today. Hopefully there will be seats on both of their flights. We will celebrate today with friends and family--not fireworks.

Anna is still scheduled to be released tomorrow, but there is one number that keeps going up instead of down. It may be nothing, but they are going to do an ultrasound tomorrow to check on everything. Continue to pray for no complications. The doctor said that sometimes it takes a few more days for this particular number to start dropping.

A big thank you to those who are helping with the other kids this week. I know they will have a great time.

Love, Marlo

Saturday, July 2, 2005 7:30 PM CDT

"Long ago I planned what I am now causing to happen."
2 Kings 18:25

It's been a long day...not a bad one, just long. Anna continues to improve. She ate better today. She just wanted to be held a lot. I've had my fill of Jimmy Neutron, Sponge Bob and Goofy. We can leave the room for short walks, but most of the time we stay put. They wake her up so early that I can't have my quiet time before she is wanting cartoons. I know that is a small thing, but without my quiet time and my walks outside, I get a little grouchy.
The doctor said that if Anna continues the way she is going, we will be discharged to the RM House on Tuesday. She will be readmitted a few days later for chemo.
Pray for endurance. I know the hardest part is over, but the longest part is just beginning.
Check out the new pictures Richard added today. We have pictures of the livers, but they are only by request. We don't want to make anyone queasy.
Love, Marlo

Friday, July 1, 2005 6:33 AM CDT

We are up early watching cartoons. We were awakened by the doctor coming in to remove Anna's last drain. What a way to wake up! It was all over very quickly. Our goals today are to get her up and moving and for her to drink more fluids. (They hooked her back up to give her fluids last night.)
Jacob and Scott did not have much hope of getting a flight this weekend so they are scheduled to come on Monday. We are thankful that the Salamys had already decided to extend their stay so that they can help this weekend. Scott took Jacob back to his "farm" until Monday. Pray for him to have a great time in someplace new. My kids are really having to do a lot of growing up this summer!
Have a great weekend.
Love, Marlo

Thursday, June 30, 2005 10:26 AM CDT

"When you open your hand, you satisfy the hunger and thirst of every living thing." Psalm 145:16

Anna can eat anything she wants now. Unfortunately she doesn't have much of an appetite. They are decreasing her IV nutrition so that she will be hungrier. Her procedure this morning went very quickly. The surgeon came in and did it herself. Now Anna just has one drain left.

Please pray for Jacob and Scott to be able to get a flight. They are flying standby and we did not realize how many people were flying to Philidelphia for the 4th of July. They didn't get on the flight this morning and things aren't looking good.

Love, Marlo

Wednesday, June 29, 2005 10:29 PM CDT

Hey! If you get this before 7:30am eastern time, please be praying for Anna's drain tubes removal. It was supposed to happen today but didn't and is scheduled for Thursday at 7:30am. Please pray for this to go as easily and painless as possible. God is so good and has been doing some amazing things in Wilmington, DE. Praise Him! -Shawna from OKC

Wednesday, June 29, 2005 1:15 PM CDT

Anna can eat food again! They gave her two saltines and she gave one to me. Pray that her appetite would increase so that she can get off the IV nutrition soon.
Pray for Jacob and our friend Scott as they travel here tomorrow.
A big thank you to our new friend Mary who learned of us on the internet and came to visit today. Her 3 year old granddaughter had a liver transplant here in 2002 because of hepatoblastoma. She is now 7 and doing fine. Thank you Mary for your generous gifts and your encouragement.
Last night I went back to the RM House to have dinner with Richard. We sat with a Christian couple--Eddie and Stacy. Eddie has MS and his daughter has CP. He said, "Well at least we don't have cancer." I told him that our daughter did have cancer and I've been saying, "Well at least she can walk." We were able to encourage one another and praise the God who gives us the grace we need in whatever situation we are facing. We finished our time together by joining hands around the table and praying for each other. What a blessing!
Love, Marlo
Right now we are waiting for people to come take out Anna's IV's and one of her drains. According to Richard, the drain removal is VERY painful. Pray for it to go quickly.
A big thank you to the Neuthmans for coming to be with us during the surgery. We appreciate you spending your summer vacation with us here.

Tuesday, June 28, 2005 2:39 PM CDT

One nurse said Anna was amazing. She was moved to a regular private room today. We anticipated 5-7 days in ICU, but only spent 4. Although her health is improving, her spirits are not. She doesn't talk much and isn't interested in playing yet. This is how she responded after her first surgery. I'm glad that I know this is only temporary!
Richard moved back to the Ronald McDonald House today. Hopefullly he will write some updates from there.
Love, Marlo

Tuesday, June 28, 2005 12:45 AM CDT

Richard writing today -- I'm back at the RonMcD House and doing okay. Anna will be moved out of ICU onto the surgical floor later today (she'll be in the same room I just vacated). It is a private room with a good view of the playground -- which will hopefully inspire her to continue to improve. She is doing well but we now begin the process of adjusting/fine-tuning all her medications to achieve all the desired results of the liver transplant -- the right amount of immunosuppression so she won't reject the liver balanced against making her immune system as strong as possible to protect against infection. There are lots of other factors too and she'll be on lots of meds for a while. We also are starting her cancer follow up. Her AFP prior to surgery was about 806. Yesterday, it was in the mid to high 400s. The AFP has a halflife of about a week so this number should continue to drop until it gets down to under 10. This is the key issue for us now (in addition to the liver continuing to function). The pathology report on Anna's liver (which has now been completely removed) indicated there was still active tumor in the left lobe and in the portal vein. The doctors have removed all the tumor they they were aware of prior to the transplant, so it could be at this very minute Anna is completely clear of cancer. However, in the event that there are any microscopic cancer cells floating aroound that were not in the liver, she will have 2 more rounds of chemo, one here and one back in OKC. We expected this and from all the information we've received, believe it is necessary to ensure that Anna is cancer free.

Thanks again for all your prayer and support. Right now we are focused on getting her meds adjusted properly, getting her AFP down to normal, and generally keeping her spirits up.

The transplant/nursing team here have been good to us "Okies" and you could also pray that Anna gets the very best nurses possible and that the docs see what they need to see to make all the right adjustments.

Grace, Richard

Monday, June 27, 2005 1:41 PM CDT

Things are going great. Richard is "unhooked" and walking around. He may be discharged tomorrow to the Ronald McDonald House. Anna had several things taken off this morning. It wasn't fun, but we were glad to have a few less things hooked up to her. She still has an IV in her neck, her port accessed, two drainage tubes, a blood pressure cuff, and an oxygen monitor. That's seven less things than she had Saturday! She will be moved to a private room tomorrow. She continues to amaze the people here with her good liver numbers, her pain tolerance, and her appetite. She still can't eat or drink but keeps begging for all sorts of things. The first thing she asked for today was gummy worms. She never complains of pain. We know she needs pain meds when her heart rate goes up or her respirations go up. The Salamys are still here and have been very helpful. We all just rotate between rooms. Anna is asleep on Phyllis' lap right now. She got out of bed for the first time today. (Anna not Phyllis)
Pray for endurance and praise God for no complications so far!
Love, Marlo

Sunday, June 26, 2005 10:36 AM CDT

Quick update:
Anna's portal vein and the artery in question are open and doing fine. The numbers that are supposed to go down are going down and the numbers that are supposed to up are going up. They removed her NG tube and may wean her off the oxygen later today. She is begging to eat "just a little bit". She keeps asking for grapenuts and yogurt. Last night she wanted a chocolate bar. The nurse asked her "Is that your daddy's liver talking?" They will probably let her drink clear liquids tomorrow. Pray that she would be distracted or sleepy enough to forget about food.
Richard went for a walk at 4:30 this morning. He was moved upstairs and his night nurse, Amy, is a real drill sargeant. She said that none of her patients were going to get pneumonia and that they all walk out of here. He will have her again tonight so he is resting up today.
Thank you for all of the cards. I have taped them to Anna's wall. The nurse said, "Wow, Anna you have a lot of friends!"
Love, Marlo

Saturday, June 25, 2005 9:57 PM CDT

Hi! Just wanted to let you know that Anna was extubated today. Her temperature is gone. Richard was moved to a room. He is still having some pain but doing well. Please pray for Marlo, Richard, Anna, Dick and Phyllis to have an easy night with lots of sleep. God has been faithful all the way. Please continue to pray for no rejection or injection and quick recoveries. He cares, Shawna

Saturday, June 25, 2005 12:08 AM CDT

Just a short note from me (Marlo). I came downstairs to get a sandwich and I had to check the guestbook. I enjoy reading the postings before I go back up. I keep thinking "What a strange experience this is!" I am the only one going back and forth between two rooms in the ICU (most families only have one patient at a time!) Anna's surgery went several hours more than they expected, but everything seems to be working at this point. She has a fever right now, but they said that often happens after a long surgery. She has mouthed the words, "I want baby." "I want to go home." and "I want a drink." Hopefully they will remove the breathing tube soon and she will have her voice back (and be able to suck her fingers.) Richard will try getting in a wheelchair this afternoon so that he can go see her.
I think my time is up.
Love, Marlo

Saturday, June 25, 2005 9:40 AM CDT

"Let me hear of your unfailing love each morning, for I am trusting you." Psalm 143:8

Thank you, Jesus. The ultrasound showed that the arteries are open and blood is flowing. Praise you! They will look again tomorrow, but the surgeons say that if it is open the first day, it will most likely stay open. Please pray for that to be the case.

Anna did wake up last night. She is okay, but naturally, aggravated by all the tubes. She wants to suck her fingers! Wow! Marlo is staying strong. I am melting, but that's okay. Richard experienced some pain last night, please continue to pray for him. He is sitting in a chair now and will probably move to a room today. The care they are receiving is amazing. Thank you, Lord. We are calling out to the Lord a lot and the Spirit is with us. Keep praying for strength, rest, and peace for all. For Richard and Anna to heal quickly with no complications. Thankful for His love, Shawna

Friday, June 24, 2005 7:59 PM CDT

Thank you for your prayers. Anna is now in the ICU. She will have an ultrasound in the morning to look at the arteries. They were able to use her own, but need to keep a close eye on them. Please pray for no complications requiring more surgery. Marlo and Richard are anxious and worn out. Please pray for good rest tonight as it has been a really long day today. Please pray for a good result from the ultrasound in the morning. Anna will be sedated tonight. The doctors say she is stong, her heart is good and it is a wait and see now. Please continue praying. The Lord is our strength and shield, a very present help in trouble. The postings and snail mail are appreciate. Marlo and Richard are encouraged by your faith, love and support. Sittie and Pop are doing well, tired, but strong. Resting in His watchcare for our friends, Shawna

Friday, June 24, 2005 6:10 PM CDT

Please pray for the doctors and nurses. Anna is still in O.R.. They connected the ducts and arteries and didn't like the way they looked, so have started to redo them. We knew going into the surgery that she had two arteries that were blocked. Anna is the last one in the O.R.. This is a really long day for the doctors. Please pray for them as well as Anna. Marlo is doing well and glad they are taking care of this while still in surgery instead of having to go back in. Please pray. I will let you know when she is out. Trusting Him, Shawna

Friday, June 24, 2005 4:39 PM CDT

Anna received her daddy's liver at 3:55. The clap came off and blood flowed. Rich continues to ask his dad to pray out loud for Anna and Marlo is reading Scripture to him. He is doing well.

Marlo and I saw the old liver. Not much to say about that except God is faithful. The right lobe of Rich's liver is the same size as Anna's whole liver. There is none like you, God. You are Creator and Sustainer. Thank you for this healthy liver that is available for our precious Anna. You have blessed this child with life now through both her mother's body and her father's body. We praise you.

Now they are working to connect all the ducts in Anna. She should be out in an hour or so. Her vitals look good and all is expected to go well. Please continue to pray. Pray for Richard's pain to subside. For him to move and breathe deeply. Pray for the duct connections on Anna to be perfect. She received one unit of blood early on. I'll let you know when she is out of surgery and in the ICU. Please keep praying all weekend. Praising Him, Shawna

Friday, June 24, 2005 1:54 PM CDT

Richard is in ICU. He is doing well, having some pain, but cracking jokes. He has asked about Anna. They started her surgery at 12:45. Her liver is about to come out and then in with the new one. All her vitals look great. Keep the prayers going up! We don't expect her out of surgery until 6:45 (5:45 OKC time) or later. Please pray for good and easy connections, no infection or rejection. Thankful to keep you posted. Marlo is doing very well. On my knees -Shawna

Friday, June 24, 2005 11:16 AM CDT

Anna went into the O.R. at 11:30. Richard's liver is out and all went well. They are putting him back together now. Anna did well going down to the pre-op room, she watched her favorite movie. They gave her some happy medicine and she was grinning when they rolled her off. Marlo is doing well and very strong. Tears just come when she is asked how she's doing. The Lord is her God! Please pray for the transplant team, the operating room to be free from infection, God's continued peace to reign here, that all the hook ups will go smoothly and everything will work as it should, that neither Richard or Anna will need a blood transfusion. Thanks so much for your prayers! -Shawna

Friday, June 24, 2005 8:33 AM CDT

Things in Delaware are going well. Richard's surgery started at 9:11am Delaware time. They plan to start Anna's surgery around 11:00. I can not explain the unbelieveable peace in the room, the hospital, the area outside. Everything is calm. We are truly experiencing His peace which passes all understanding. I was exceptionally impressed with one of the surgeons. WOW! She came up and talked for a while. She was so wonderful! Please continue to lift the whole day and days to come, up to our good God. Marlo is doing so great! So are Sittie and Pop. Please pray for Anna. She is starving and oh! how we want to give her something to eat. Please pray that she will not think of food. She is so mad that Marlo won't give her anything right now that she has resorted to calling her a "cry baby." If that's the worst Marlo gets called, then all is well. But do pray for Anna to calm down and relax. She has been happy besides being hungry. I will keep you posted! Praying with you, Shawna

Thursday, June 23, 2005 1:11 PM CDT

We have had a good day so far. Nate and MaryKathryn came and played this morning, then we went out to lunch with Sittie and Pop. The hospital room is not quite ready so we will go back at 3pm. I was a little nervous when we went to the hospital at 1pm and then the phone rang. It was a friend from Minnisota who called to remind me "Do not be afraid or discouraged for the Lord will go before you. He will be with you. He will not fail you nor forsake you." I thanked her for reminding me!
Anna is telling everyone that they are going to unzip her and take part of Daddy's liver and put it in her. She is a little nervous, but I think she is handling things very well.
I will write again when I can, but until then, my friend Shawna will update the website. She and her family are here to help for a few days.
Richard will go to surgery tomorrow at 7:30am (that's 6:30 for you Oklahomans and Kansans.)
Love, Marlo

Wednesday, June 22, 2005 11:21 AM CDT

Yes that was a real song I posted yesterday. The writer said, "I've never really been to Delaware...so it represents God taking me places spiritually that feel so foreign and far from home." God certainly has taken our family to new places the last four months--children's hospitals, cancer clinics, transplant centers, and Delaware! I am learning that joy does not come from my circumstances, but from trusting God in my circumstances.
"Taste and see that the Lord is good. Oh, the JOYS of those who trust him." (Psalm 34:8) I have prayed over and over for strength the last few days. Today I remembered that "The JOY of the Lord is my strength." So I figure that joy comes from trusting God and that strength comes from being joyful. Then this morning I read "A JOYFUL heart is good medicine." (Proverbs 17:22)
*Pray that I will trust God in the days ahead, and that I will remain joyful in the midst of my circumstances.
*Pray for Richard's parents. They are flying in today. Richard is their only child so this is very difficult for them.
*Pray for Richard as he faces surgery in two days.
I was trying to explain to Anna that she was going to get part of her daddy's liver. She said, "How will they get it in there?" I told her that they would unzip her and put it in. Her eyes got big and she said, "That will hurt!" She felt better when I told her that she and Daddy would be asleep and that I would be there when they woke up.
Her best friend Nate is arriving this afternoon. I didn't tell her he was coming because she would be too excited and not take a nap.
*Pray that she will have a fun evening with her friend.
Love, Marlo

Tuesday, June 21, 2005 6:39 PM CDT

A friend gave me a recording of a song called "Welcome to Delaware" by Watermark. Here are some of the words...

___________________________________________________________
My scenery keeps changin' and sometimes it's hard to view
But You've let me see so much since I've known You
Though I headed to what seemed like nowhere
You told me You'd meet me here
And You were here to say....

"Welcome to Delaware, I know you've traveled far...
All you really have here now is Me!"

So I settled here and that is that
For You to show me who I am
You had to take me to a place I'd never been
And all the things I dreaded most about the things unseen
Have now become the sweetest part of me
Though I headed to what seemed like nowhere
I knew You would come
I knew You would meet me here
And You were here to say...

"Welcome to Delaware.."
_________________________________________________________

God has taken us to someplace new and is showing us things we've never seen. He has gone before us and welcomed us here. I know he will see us home.
Love, Marlo

Monday, June 20, 2005 7:51 PM CDT

"The Lord will work out his plans for my life."
(Psalm 138:8)

I am trusting that all of this is somehow in God's master plan for our family. The kids at home seem to be doing fine. Thank you to all of you who have taken food to the house.
Tonight we had a special visit from Kent and Leslie Gamble who came to Baltimore for a conference and rented a car to come down and see us. They took us out to dinner at the Charcoal Pit--"a Delaware tradition." Kent and Leslie were Will's Sunday School teachers last year and will be Anna's teachers next fall. They said this was the farthest they had gone for a SS visit. We sure are glad they did.
We talked to the surgeon today. The plan is for Anna and Richard to be admitted Thursday afternoon. They will get to share a room that night. Richard's surgery will begin around 8am Friday. Anna's will start a couple of hours later. When they get out of ICU Anna will need a private room, but they will be on the same hall.
We are still waiting for a phone call, but we are prepared for a double surgery on Friday.
Love, Marlo
RMH #318
1901 Rockland Rd.
Wilmington, DE 19803

Sunday, June 19, 2005 6:42 PM CDT

"Brothers, if you have any word of encouragement for us, come and give it." (Acts 13:15)

I appreciate everyone who is writing and praying for us. We have almost made it through another day. We celebrated Father's Day by going to Chili's.
Tomorrow Anna has an EEG at 12:30. It will be scary for her, but not painful. Last night when it was time to go to bed she said, "Why do we have to stay here forever!?"
We are all ready to go home. How will we make it--only by the grace of God.
Love, Marlo

Saturday, June 18, 2005 1:02 PM CDT

"Do not be afraid or discouraged, for the Lord is the one who goes before you. He will be with you; he will neither fail you nor forsake you." (Deuteronomy 31:8)

We are still waiting. I don't know what I will do if we actually get a phone call. I certainly don't feel ready to move to the hospital. I just settled in here! Anna told her grandmother on the phone that she got her new liver and that she would be home tomorrow. I guess when she had her CT scan she thought that was it. She has no idea what is in store for her, but then neither do I.
We went to the Delaware zoo this morning. It was very small, but beautiful. Anna fell asleep as soon as we got back in the car. She is playing in the bathtub right now. It is her second bath today. She won't be able to take a bath for a long time, so she can have as many as she wants.
If anyone wants to send a card, you can mail them to us in care of the Ronald McDonald House rm.318, 1901 Rockland Rd., Wilmington, DE 19803.
Love, Marlo

Friday, June 17, 2005 2:12 PM CDT

Waiting....
We took Anna for her CT scan this morning at 7:30. It was a beautiful morning as we walked to the hospital. We slept SO soundly last night. I know someone was praying for us to rest. Anna refused to sleep in her bed (because it wasn't her bed), but she slept great on the floor. We are being put on the "list" this afternoon so now we will wait to see what God is going to do. Will he surprise us with a phone call in the middle of the night or will her daddy give her his liver (as well as his heart)? We shall see!
If you have to go through this I can't imagine how God could make it any easier. We have a beautiful place to stay, volunteers come in each night to make dinner, the hospital is VERY nice, the people are friendly, I have this computer in the lobby to write to you, the other kids are having fun and got to go swimming today, someone even found Anna some Cocoa Pebbles when she was asking for Cocoa Puffs (it was the closest they could find in their "stash" of cereal.) Now I am waiting for the van to come and take me to the store so that I can get a few things we need.
Thank you for caring for us.
Love, Marlo

Thursday, June 16, 2005 2:56 PM CDT

We are here! We left the house this morning at 5am. I had dressed Anna in a shirt and some mismatched pajama bottoms last night--thinking that I would put her jumper on when she woke up. Well, I put the jumper on when we got to the airport and she looked really cute until we got on the plane and spilled orange juice all over herself. Off went the jumper and she has worn her mismatched pj bottoms all day. When I took her to the bathroom on the plane (her favorite part of the trip) I realized that she had her pants on backwards. Oh well, what do they expect from a couple of Okies.
The Ronald McDonald House is very nice, but Anna already wants to go home. Pray that she would settle in here and that it would feel like a home to her. Richard is already at the hospital meeting with someone about being a donor. I think they want to make sure he isn't crazy.
Love, Marlo

Wednesday, June 15, 2005 9:52 PM CDT

Tonight we are trusting that the Lord is going before us. Today began with Will crawling in bed with me and saying, "When I woke up I almost forgot that you were going somewhere far away." It broke my heart because I know what it's like during those first few moments when you wake up-- before you remember what is happening in your world. After I told him that he would be able to ride on an airplane and come see us he said, "So, there are sad thoughts and happy thoughts." Pray for little Will who still needs his momma and worries about someone remembering to pick him up.
After my conversation with Will, I sat with Anna at the breakfast table and told her that she was going to get on an airplane and go get a new liver. She didn't really like that news so I softened it with the promise of Skittles and a new "big girl" car seat for the airplane. Now she is telling people that she is going on a "field trip." I am comforted in knowing that she will not remember all of this someday--but I will.
Our house was full this evening of family and friends joining around us to pray. Pray for our strength (which I know comes from our ability to trust God). Pray for a new liver. Pray that we will be a blessing to the people at DuPont. (I have seen A LOT of hurting people since I've spent so much time in the hospital.) Pray that our kids will feel secure.
I don't know when I will be able to update this again, but keep checking and keep praying.
Love, Marlo

Wednesday, June 15, 2005 0:15 AM CDT

"do not be afraid...the Lord your God is among you, and he is a great and awesome God." (Deuteronomy 7:21)

My mind is racing and I can't sleep. We are leaving tomorrow for Delaware. Anna's AFP was 805 which means that the tumor is not responding as well to the chemo as it did at first. (It is common with this tumor for the chemo to lose effectiveness after 4 rounds.) We are going up there tomorrow so that Anna can be listed on the donor registry Friday. That means we will wait for a cadaveric donor for one week before doing a living donor transplant on the 24th.
Everything seems to be happening so fast. We told the kids tonight that we would be leaving. Audra handled it well after I told her that she could ride an airplane and come see us. The boys were tearful--especially Will. Please pray for them to have a GREAT summer--full of fun times. I made Richard promise that we would bring them out to be with us later. I can hardly face leaving them for so long.
It's still hard to believe this is really happening. We are trusting that God's plan is perfect and that he will walk us through this.
Love, Marlo

Monday, June 13, 2005 7:07 PM CDT

The saga continues.....

We are home from the hospital and we STILL don't know for sure about a transplant. God is allowing us to live with uncertainty, which requires us to trust him EACH day for WHATEVER lies ahead. We talked to the surgeon in Delaware and after seeing the MRI she may be willing to wait until after one more round of chemo to see if the tumor shrinks enough to be resectable. This will depend on Anna's AFP levels being below 300. They drew blood for the AFP today so hopefully we will get the results tomorrow.
We met with the transplant team at Integris today and they said they would not help us with follow-up. The GI at Children's is willing to help us and will work with the team in Delaware to coordinate Anna's follow-up.

To be continued.....

PS. Last night at the hospital they had a "code black" for severe weather. They made everyone go into the hallway and sit out the storm. They tried to make it fun by serving popcorn and juice.

Sunday, June 12, 2005 6:12 AM CDT

I'll start with a favorite from a wise old king: "Trust in the Lord with all your heart; do not depend on your own understanding. Seek His will in all you do, and He will direct your paths." (Prov. 3:5-6, NLT).

Marlo is still at the hospital with Anna but as of last night Anna's fever had come down some (hopefully to stay). We were hoping to avoid a hospital visit this weekend as it may be the last weekend in Oklahoma City for a while. It's entirely possible that we could be leaving for Delaware as soon as next Saturday or Sunday. We have many KEY decisions/results in the next 24-48 hours. Here are the critical issues: 1. Does Anna need a transplant? We know that the MRI last Thursday indicated some "residual tumor." We have not talked yet with our doctors here in OKC or Delaware to determine whether this tumor is resectable (removable by surgery) or will require a transplant. 2. If she does need a transplant, am I (Richard) a living donor candidate? I've had all my tests -- just need to know the results. 3. If she needs a transplant, how will we handle follow up locally? This is as important as the tranplant itself. We have a meeting tomorrow with doctors here to see whether they are prepared to assist in following up Anna's care. If we can't arrange local followup, it seems to me that we cannot use Delaware as our transplant facility.

In the end, we need God to clearly "direct our paths" and "make our path straight." These decisions and their ramifications are simply too big for us to handle alone. If God doesn't do it, we're lost.

Thanks again for your prayers and words of encouragement. And thanks for allowing me to intrude upon Marlo's territory with my "Joe Friday" prose ("just the facts, ma'am).

Grace,
Richard

Saturday, June 11, 2005 12:14 AM CDT

There will be no "getting away" today. Anna has a fever and we are on our way to the hospital for 48 hours of antibiotics. I don't know what we will do about her EEG on Monday or the meeting with the transplant team. That's another day and I just have to get through today.
Love, Marlo

Saturday, June 11, 2005 7:56 AM CDT

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles ae achieving for us an eternal glory that far outweighs them all. so we fix our eyes not on what is seen, but on what is unseen. For what is seen is TEMPORARY, but what is unseen in eternal." (2Corinthians 4:16-18)

I am trying to remember that all that is happening right now is temporary. It will not go on forever. The storms always subside. We have had thunderstorms here the last three nights. During the night, you think the thunder and lightening will go on forever, but they don't. And in the morning after each storm, there has been a time of refreshing coolness. I know that the "storm" we are experiencing will pass as well. During the storm I need to be like my children and run to my Father's room and rest in his arms through the night.

The preliminary report from the MRI says that there is "residual tumor in segment IV". We don't know what this will mean. We don't know if it's small enough to be resected or if by it's presence, a transplant is still indicated. We are waiting to hear from the doctors.

Waiting is stressful. I can see why some people turn to alcohol. They just want to stop thinking about their problems for a little while. As for me, I called some friends to come watch the kids so that we could go to a movie this afternoon. We just need a break from thinking.

*Pray that we will see this whole situation from God's perspective. It seems HUGE to us and I know it's not so big in light of eternity.
*Pray for travel preparations that will have to be made.
*Pray that we will work out our plans for Anna's follow up care.
*Pray that we will TRUST God's perfect plan, even if it's not what we want.
Love, Marlo

Thursday, June 9, 2005 7:15 PM CDT

"I will take refuge in the shadow of your wings until the disaster has passed." (Psalm 57:1)

Actually I feel like taking "refuge" in bed with a blanket over my head until this disaster has passed, but Richard won't let me do that.

We made it through another day of tests. We are waiting for the results of the MRI. If any of you have waited for test results you know how we feel right now.

Tonight Anna said, "I love you Mom, even though we have to do all of that stuff to get me better." It's really amazing. Almost without fail, after every procedure, Anna says "I love you Mom." In Zephaniah 3:17 the Bible says "he(God) will quiet you with his love." That is what I do for Anna and her response is to return that love. I have to remember that God is there to quiet me.

*Pray for Anna's counts to go up. They are on their way down so she will be staying home this weekend.
*Pray for agreement between the doctors/radiologists when they read the scans. Pray that it will be very clear whether we need the transplant or not.
* Pray for us to trust God. Our prayer this morning was this...
"Father we know that all things are possible for you and you are able to heal, but even if you do not, we will still trust you and your plan for Anna. We know that just as you walked with Shadrach, Meshach and Abednego through the fire, you can walk us through as well."
Thank you for walking with us.
Love, Marlo

Wednesday, June 8, 2005 11:35 AM CDT

"When I am afraid I will trust in you." (Psalm 56:3)

I say this verse over and over again when I go for my morning walk. Sometimes I am strong and sometimes I am overcome with fear. This whole experience for me has been about learning to trust God.
Today we made it through the EKG, echocardiogram, and x-rays. Anna cried that it hurt even though we know that it didn't. Everything is so scary that she can't calm down enough to realize that it's not as bad as she thinks. Tomorrow they will sedate her for the MRI, then give her the last dose of chemo, and take blood for labwork. Tomorrow will be as bad as she thinks!
Please pray that we would find the right person to do Anna's follow-up. This is important because transplant recipients require a life-time of follow up.
Thank you for all of the encouraging notes on the message board. They mean a lot to me.
Love, Marlo

Tuesday, June 7, 2005 5:38 PM CDT

"As for God, his way is perfect." (2 Samuel 22:31)

Even though it doesn't feel like it, I can trust that God's way is perfect.

We have been busy getting Richard tested to make sure he is a candidate to donate part of his liver. Tomorrow we start testing Anna--EKG, Echocardiogram, X-rays, blood tests, EEG and the all important MRI on Thursday. Oh yes, she also gets her last dose of chemo.
I feel like we are on a fast moving train and we can't get off. I am making all sorts of lists trying to prepare to go to Delaware. We usually only get a sitter once a week. Trying to manage how to care for everyone 24/7 for six weeks is impossible. My preparations are made even more difficult because we won't find out until Monday whether or not we HAVE to have the transplant. That means we have to wait to make plane reservations. I am still holding out hope, but the doctor in Delaware is pretty confident that we will be coming.

Please pray for Anna the next few days. She is really going to have a lot done to her. On Thursday they are going to take a LOT of blood. Pray that she won't need a transfusion. On Monday she is going to have a "sleep deprived EEG". We are supposed to keep her up until 11pm and wake her up at 4am and not let her go back to sleep until the test at 9:15. YUCK!
Pray for happy times in between all of the tests. We want to enjoy these days at home. When you go to bed tonight with all of your family under the same roof, be thankful.
Love, Marlo

Saturday, June 4, 2005 10:36 AM CDT

"Where does my help come from? My help comes from the Lord, who made the heavens and the earth! He will not let me stumble and fall; the one who watches over me will not sleep...The Lord watches over me as I come and go, both now and forever." (from Psalm 121)

I'm sorry I haven't written very often this week. I didn't really know how to share what was happening. Anna will have an MRI on June 9. Please pray for it to be "clean." That will be the deciding factor as to whether or not she needs a transplant. The doctor in Delaware is pretty sure that she will need one. She has reserved the OR for June 24th. That is a little scary for us because it's less than three weeks away. We ran into a problem yesterday with the transplant center here in town. They said it was against their policy to do follow up on someone from another center. We have a meeting with them this week. Please pray that God would grant us favor with them and that they would reconsider their position. If we do need a transplant there will be lots of things to pray for, but one specific need will be transportation. We would like to be able to have some family (including our other kids) and/or friends come be with us for part of the time we are there (4-6 weeks).
Today we celebrate Jacob and Audra. Happy Birthday!
Love, Marlo

Thursday, June 2, 2005 12:14 AM CDT

"He who is the God of Israel does not lie or change his mind; for he is not a man, that he should change his mind."
(1 Samuel 15:29)

God is the same, but we have changed our minds! If you read the last entry you saw that we were going to St. Louis. Now we have decided to go to Delaware. Do we know anyone in Delaware? No! Do we know how far Delaware is? Yes! But we feel good about this decision. The team there has treated several hepatoblastoma patients and had good results. They do chemo after the transplant. They will let us do the pre-transplant testing here at OU medical center. They will let us do the weekly follow up visits and lab tests here. And most important, Richard has talked with the surgeon several times during the last few weeks and he trusts her. It has been a difficult decision. Once you have a transplant you are monitored for life. We feel very comfortable with the folks in Delaware even though it is so far. As soon as we know for sure that we are going, I will be trying to arrange airfare through the Corporate Angel Network.
Anna will have a CT scan or MRI next week. I still pray that these tests would show that she doesn't need a transplant. We need to know if the areas that show up on the scans are scar tissue or tumor. Richard will also have a CT scan and some other tests. Pray that he would prove to have a healthy liver.
Thank you to all of you who are going through this with us.
Love, Marlo

Wednesday, June 1, 2005 11:40 AM CDT

"As pressure and stress bear down on me, I find joy in your commands." (Psalm 119:143)

I think we have finally made a decision. We will go to St. Louis the week of June 13th to be evaluated for a living-donor liver transplant. That means two days of tests for Richard and Anna. (I'm still hoping that they will do a CT scan that week and say that she doesn't need a transplant.) For now we are trying to arrange transportation for us and care for the other kids while we are gone.
It took a few extra days for Anna to recover from her last chemo, but today she is back to "normal". We had outpatient chemo this morning, but it hasn't seemed to affect her. She had a great birthday. The only problem was when we ran out of presents! This is bday week at our house with Jacob and Audra celebrating theirs this Saturday.
Life goes on no matter how crazy things get.
Love, Marlo

Saturday, May 28, 2005 11:18 AM CDT

Thank you for praying for us. The last few days have been difficult as we try to make a decision that we don't want to have to make. The two centers we are considering are different in their approach. One does chemo post-transplant and the other does not. So now we feel like we are deciding the treatment and not just the facility. We obviously don't feel qualified to do that. Another friend going through a similar situation reminded me that Anna's life is not in my hands. It is God who knows the number of her days before one of them came to be. We are still hopeful that we won't need a transplant, but we may not know for sure until she is on the OR table.
Have a great weekend. We will celebrate Anna's 3rd birthday tomorrow with her Grammy, Papa, Aunt Shonda, Uncle Marc, and cousins.
Love, Marlo

Wednesday, May 25, 2005 2:01 PM CDT

"God will receive glory because of all that happens to me." (John 13:31)

Those are the words of Jesus, but I pray that it would be true for us as well. My heart is heavy this morning. I've just returned home from the clinic where I visited with a mom who lost her son to cancer in December and is now facing it again with her daughter. How can someone handle that? You ask that about me. I ask that about her. The truth is we can't handle it. God does give us more than we can bear. But when we face the impossible, he is there. In the midst of the storm he says "It is I. Don't be afraid." (Matt. 14:27)
Our hospital stay went well. The worst part was accessing her port. She actually pinched the nurse who was holding her down and pulled my hair--hard! After that was over we had a good time. She didn't need any extra anti-nausea drugs. We finished up her chemo today and don't go back until next Wednesday.
Pray for us as we make a decision about where to schedule a transplant if one is needed. Our doctor keeps saying that anyone with a diffuse tumor like she had needs a transplant.
Love, Marlo

Monday, May 23, 2005 7:04 AM CDT

"This is the day the Lord has made. We will rejoice and be glad in it." (Psalm 118:24)

Just a quick note to let everyone know that we are being admitted to Children's hospital this morning to start round 4 of the chemo. Pray that the side effects would be minimized and the results would be maximized. Pray for Anna's peace as we tell her what is happening today. (That time of reckoning when we tell her where we are going is not good--for any of us.) Pray that we would find ways to make the next two days fun. Pray that I will rely on God's strength and not my own. (I tend to get grumpy when I'm awakened for the fourth time during the night, but HE never sleeps!) We will be home tomorrow night.
Love, Marlo

Sunday, May 22, 2005 4:17 PM CDT

"It is better to trust the Lord than to put confidence in people." (Psalm 118:8)

When we met with the doctor on Friday we were discussing the ultrasound and he asked if we had decided where to have a liver transplant. He said that the test showed "diffuse infiltrative processes". He thought we should be ready for a transplant. We were a bit surprised by his comments since we had put our plans for a transplant on hold after the last CT scan. When I left the office I was not upset. In fact, my thought was "He doesn't know what he is talking about."
I was fixing dinner at 6pm when the phone rang. It was the oncologist. He said that he went back and talked to the radiologist who wrote the report. The radiologist said that "diffuse infiltrative processes" doesn't necessarily mean tumor. It could just be fibrous tissue left over from the tumor. That would be more consistent with all of the other test results we have received--CT, PET, AFP. Either way, we are trusting in God to work out his plan for Anna's life and not in the doctors (who seem baffled by her response), or even in test results. What we see is a little girl who suffered from bone pain, stomach pain, fatigue, mouth sores, anorexia etc. during her first round of chemo and now has none of those side effects/symptoms. Thank you for standing in the gap for us.
Love, Marlo

Friday, May 20, 2005 9:15 PM CDT

"I cried out to the Lord in my suffering, and he heard me. He set me free from all my fears." (Psalm 34:6)

We got the results from the tests we had earlier this week. The PET scan did not show any activity except for some sinusitus. (I'm sure it was a very expensive test to tell us that Anna has a runny nose.) The PET is not always reliable in the liver so there MAY be something there and it just didn't show up. The ultrasound showed something, but they are not sure what. It could just be fibrous tissue left from the tumor. We will have to do another CT scan in 3 weeks along with another AFP test. We are trusting in God and we are not afraid.
Love, Marlo

Tuesday, May 17, 2005 2:34 PM CDT

We made it through the PET scan. We gave Anna the sleeping medicine before we left the house and she fell asleep in the car. She woke up briefly when they injected the radioactive glucose, but then slept for 1 1/2 hours while the glucose worked it's way through her system. She woke up again when we put her on the scan's table, but she was happy and not anxious. When we told her that the table would move into the tunnel she clapped her hands. We had to remind her a couple of times to be still, but mostly she was still and quiet. I thought she had gone back to sleep, but when I went to check on her she smiled at me. We like the "happy" medicine! Thanks for praying for a calm spirit. I was the only anxious one! Hopefully we will get the results of these tests on Friday when we go back to the clinic for bloodwork. We are planning to be admitted for round four of chemo on Monday the 23rd.

Jacob is in day two of his fever. It lasted three days with Will so we are expecting Jacob to follow the same course. Luckily, he is content to stay in his room and read or watch movies. Continue to pray that Anna will not catch anything. I do NOT want to go back to the hospital for antibiotics this week.

Love, Marlo

Monday, May 16, 2005 1:01 PM CDT

The ultrasound was not fun, but it's over. I was glad my friend was with me because we had to hold Anna down while she screamed "Owie, owie!" I KNOW that it didn't hurt because I've had ultrasounds before. I couldn't convice her of that though. It took a long time because she was wiggling and screaming so much. Tomorrow is our PET scan. Once again Anna will not be able to eat and this test isn't sceduled until 11am. They don't do sedation for the PET scan and they don't test very many young children. I am going to give her something before we leave the house that is supposed to relax her. Pray that it works. There is no way to do a PET scan if she doesn't hold still.
Love, Marlo

Monday, May 16, 2005 7:36 AM CDT

Pray for us this morning. Anna woke up at 6am asking for milk and she can't have anything until after her sonogram. Luckily she went back to sleep. I will have to wake her up to get ready pretty soon. Jacob came down with a fever last night so pray that she won't catch that from him. I don't remember my kids being this sick before! I am thankful for the friend who is coming to stay at my house and the friend who is going with me to the ultrasound. "My help comes from the Lord" (Psalm 121), but he uses YOU to help!
Love,
Marlo

Saturday, May 14, 2005 12:52 AM CDT

Home again, home again, jiggity-jig...(just something we say when we pull in the driveway:)

Anna and I left the hospital at 11am today. Although she doesn't have a fever, her counts are VERY low. Her AGC is 20 right now. This is the lowest it's ever been. It has to be over 500 for her to resume "normal activity" (like leaving the house or playing with friends). It's a little scary to bring her home so vulnerable. Right now she is wearing her KC Chiefs cheerleader outfit, red sparkle shoes, and a purple bow in what's left of her hair. On the way home she cried because I wouldn't stop at 7-11 and let her get a treat. I told her it was too dirty for us today. I offered to go get her whatever she wanted, but I think after being confined to her hospital room for 3 days she just wanted to go somewhere.
We had good news this week. Anna's AFP is down to 3,334. That is about what we could expect if that number is going down by half every 7-10 days like we are hoping it does. It was 23,000 last month so it has come down quite a bit. It still needs to get below 10 to be normal.
We will get Anna's blood tested before our ultrasound Monday to see if she will need a transfusion. Pray for her hemoglobin and white blood cells to go up tomorrow so that we won't need a transfusion.
Thanks for the encouraging notes on the message board. We are not alone!
Love, Marlo

Thursday, May 12, 2005 9:15 PM CDT

"We are hard pressed on every side, but not crushed; perplexed, but not in despair..." (2 Corinthians 4:8)

Just when we thought the storm had calmed down another wave hit us! Anna is in the hospital receiving 48 hours of antibiotics. We got there at 10pm last night and they didn't start the meds until 2:30am. The worst part was having to draw extra blood samples at 1am from her arm (instead of her port). I couldn't handle holding her down for a third time that day so Richard took her to the treatment room and held her while I stayed in the room. It was not a good night. Today was much better. Her temperature has stayed around 99. She is comfortable, but tired as her counts are dropping. Pray that her body will start making white blood cells again so that her counts will go back up. Pray also that her fever will stay down. Richard is staying with her tonight and I will go back in the morning. I am thankful for Richard's parents who came over last night and stayed until he got back home. I'm also thankful for my mom coming down to stay with the kids today and tomorrow. Hopefully we will get to come home Saturday.
Love, Marlo

Wednesday, May 11, 2005 9:01 PM CDT

Please pray for us. We are on our way to the hospital if Anna's temp. doesn't go down. It is over the magic number of 101. Will has had a temp of 102 all day. We are packed and ready to go--with much weeping on Anna's part (and mine). Pop is here to stay with the other kids. We knew this was a possibility. I am thankful that this is the first time although I wish we didn't have to at all. If it's Will's virus, his hasn't responded to antibiotics and that scares me for Anna's sake.
Love, Marlo

Wednesday, May 11, 2005 2:05 PM CDT

"They...were at their wits' end. 'Lord, help!' they cried in their trouble, and he saved them from their distress. He calmed the storm to a whisper and stilled the waves. What a blessing was that stillness as he brought them safely into harbor!" (Psalm 107:27-30)

Imagine being in a terrible storm and then having God calm the storm to a whisper. That is what we are experiencing right now. All of the things that were so bad a few weeks ago have calmed down--the pain, the anorexia, the constipation, the extreme fatigue, even our emotions. The tumor that appeared to be all over her liver seems to have calmed to a whisper as well. What a blessing is the stillness!! We are thankful for these days.
It's amazing that we can be thankful on a day when Will has a high fever and Anna had to have chemo, but compared to some of the days we've already been through it's not so bad. Our pastor said that the battle is in our minds. How we see our circumstances determines how we respond. I have made an effort to find things to be thankful for through all of this--and there is so much! Thanks to all of you who are praying for us and helping us in practical ways.
Love, Marlo

Monday, May 9, 2005 9:08 PM CDT

"How do babies get into their mom's tummies?"
"That is a miracle."
"But how do miracles happen?"
That is the conversation I am listening to as I write this. Richard is putting the girls to bed and Audra has questions. I'm glad I am in here and he is in there! I'm sure he will do fine.
We had a great Mother's Day. My parents surprised us and came down for lunch on Sunday. We had plenty of food thanks to our friends Sid and Mary Beth. Anna went to church and got to play with her friends. Today she went to her friend Nate's house while I stayed home with Will who is sick. Nate's mom found Anna in her bedroom completely naked and the bathtub water running. I guess she was going to give herself a bath.
We have more chemo on Wednesday. This is the week when her counts usually fall so we will have to be careful about getting out. Pray that she won't catch Will's virus because she doesn't have any way to fight it.
Love, Marlo

Friday, May 6, 2005 1:22 PM CDT

Today I am feeling like a journalist with a deadline to meet so I have to come up with a story. I try to update this website every other day for those of you who check it often (like my mom).
Some of you may wonder what it feels like to receive the news that your child has cancer. I read a good description in Gracia Burnham's new book "To Fly Again".

"How do we manage when life spins out of control in a single day?...What do we do when all our plans and goals are put on hold, when everything we had intended to do and see and accomplish gets swept aside, and we don't know if we'll ever get back to familiar ground?"

That's how it feels--like everything you had planned and knew is swept aside in a single day. Gradually, you get your feet back underneath you and find that you are in a new world and you have to get used to a new normal. This new "normal" involves many trips to the hospital, lots of medicine, and a whole new vocabulary. It's also full of very nice people who want to make things easier for you because they have been there too.

"The times when life seems unmanageable to us are the times when we find out that God is truly good...He has a thousand ways to sustain us through our darkest hours. Life sometimes throws us vicious surprises--but He is not surprised." (TFA pp. 12,13)

Love, Marlo

PS. This week the mother of one of Jacob's friends brought us dinner. While we were talking about Anna, she offered us part of her liver and the use of her lake house. When I told Richard about our conversation he said, "Can we have both?" :)

Wednesday, May 4, 2005 1:12 PM CDT

"the servant...is merely doing what he is supposed to do...when you obey me you should say, 'We are not worthy of praise. We are servants who have simply done our duty.'" (Luke 5:9,10)

Someone last night called me "Superwoman" and I thought of this verse that I had written in my journal last month. Richard and I did not choose this path, but we are trying to respond in the only way we know how and that is in trusting and obeying the one who made us. We are not "Supers." If you could see the dust in my house, or the time I waste on the computer, or even how I lose my temper, you would not think I was super-mom. Hopefully what you do see is someone who is trusting in a God who is Super. He can do all things and knows all things--not me. Because I know that HE holds the future, all fear is gone. It's amazing, because there was a LOT of fear at the beginning of this ordeal. I still know that there is a chance that Anna may die, but I have faced that and trusted God with even that possibility. Once you do that, what else is there to be afraid of? Will I be afraid again--probably. Can I enjoy today--definately.

We had more chemo today. Everything went fine. The nurses say Anna reminds them of a cat when she is yelling during her chemo. (Her voice is very high and raspy from one of the drugs.) Her counts are high enough for her to go to church for Mother's Day--yea!
Love, Marlo

Monday, May 2, 2005 9:55 AM CDT

"Praise the Lord, I tell myself, and never forget the good things he does for me..He surrounds me with love and tender mercies. He fills my life with good things" (Psalm 103:2,4,5)

Truly our life is filled with good things if I will only take the time to notice and be thankful. We are surrounded by the love of our family and friends. Thank you for all you have done and especially for your prayers on our behalf. Anna used to be on Zantac, Zofran, and Miralax for her "tummy". Now she is just taking a Magnesium supplement and Miralax as needed. Today I gave her a haircut because her hair stopped falling out and what was left was getting in her eyes. She has also gained back the weight she lost and is eating well. Her spirits are good and her attitude is that of a normal 3 year old--stubborn and demanding. Her CT scan was better than we could have expected. God has answered all of your prayers. Has he healed her? I don't know. I feel like the disciples when they saw Jesus raised from the dead, "Still they stood there doubting, filled with joy and wonder." (Luke 24:41) We will continue to pray and praise.
Love, Marlo

Saturday, April 30, 2005 7:50 PM CDT

We are having a great weekend. Anna was thrilled to get to go to the mall yesterday for an hour. Her favorite things are getting a gumball and throwing pennies in the fountain. She hasn't discovered shopping yet.
Her tummy has been hurting off and on, but mostly she is not in any pain.
Love, Marlo

Wednesday, April 27, 2005 4:34 PM CDT

We have finished with chemo for this week. We were fortunate to be admitted on a slow day on 3G. There were only 5 kids on Monday so we had our own room and our own nurse. She took the time to play "nurse" with Anna and her baby doll. The night was still bad because with the Cisplatin, they have to make sure she flushes it out of her system ASAP. That means they pump her full of fluids and measure her output. Every 2 1/2 hours we had to wake her up and get her to the bathroom. Have you ever tried to wake up a 2 year old 4 times during the night? They get very grouchy (and so does Mom). Tuesday was my birthday, but I was too tired to enjoy it. We got home about 5pm and I went to bed at 7pm. Today we went back to the clinic for outpatient chemo and now we can rest.
Love, Marlo

Sunday, April 24, 2005 9:24 AM CDT

"The Lord says, 'I will rescue those who love me. I will protect those who trust in my name. When they call on me, I will answer; I will be with them in trouble.'" Psalm 91:14

We have had a great weekend and are all rested up for our hospital visit tomorrow. Please pray for Anna not to be anxious when she finds out. I hate to tell her too far ahead of time because she just worries. Once we get there and get settled in she will be okay. I'm even getting better at not being anxious before these visits. Thanks for praying for me too! The other kids have been healthy since Tuesday when Audra had the stomach bug. Thanks for praying for them.
God is with us.
Love, Marlo

Friday, April 22, 2005 2:32 PM CDT

We survived another clinic visit thanks to Richard's mom. Anna wanted her to go with us. She showed off for "Sittie" by being a big girl and doing everything she was supposed to do (get weighed, blood pressure, temp., finger poke, and tummy exam). Dr. Saxena asked if Sittie could come every week. He had never seen Anna so animated. Unfortunately she "lost it" when it was time to go. I think these tantrums are a result of almost being three and not a result of having cancer.
Her blood counts are almost where they need to be so everything is a "go" for admission on Monday. We should go home Tuesday evening and then we will go back to the clinic Wednesday for the rest of the chemo.
Next week we will get to see the two CT scans and compare them ourselves. (Not that we know anything!) We have also sent copies to three different transplant hospitals so that they can review them.
Have a great weekend!
Love, Marlo

Wednesday, April 20, 2005 2:38 PM CDT

Thank you to those of you who are rejoicing and praising God. I've heard from a few of you. I'm afraid most of us are like Thomas who wanted to see proof of the miracle. I just talked to the transplant doctor and he has ordered a PET scan. Before she can be considered for transplant, they have to rule out any metastisis in any other part of her body. This is a very new test and there is only one machine in the state. I was going to ask about another test besides the CT scan, but God was one step ahead of me.
Let's all wait and see what he shows us next!
Love,
Marlo

Tuesday, April 19, 2005 4:26 PM CDT

"Say not, my soul, 'From whence
Can God relieve my care?'
Remember that Omnipotence
Hath servants everywhere."
(JJ Lynch)

"We must never forget that (God) has a thousand ways to sustain us through our darkest hours." (Gracia Burnham)

Thank you friends for making the way easier for us. Today my house is clean and my pantry full thanks to God's servants here on earth. God knew I was discouraged last night as we faced another clinic and hospital visit. I prayed for him to change my heart and he encouraged me through others.
We will NOT be going into the hospital tomorrow. Anna's counts are at 100 and they must be over 500. We will do another blood test on Friday and be admitted Monday if her counts go up.
We asked the doctor about her CT scans and he said that he couldn't even see ANY tumor on them. We are a bit confused by the discrepancy between her AFP level of 23,000 and the CT scan. (A normal AFP is under 10.) We are thankful that the tumor has shrunk so much they CAN'T EVEN SEE IT. This type of tumor does not go away with chemo. There is always some type of surgery--resection or transplant. We've already had one resection at her diagnosis, but we have been anticipating more. Please praise God with us for the good report. We don't know what this means, but we are thankful for God aswering our prayer for tumor shrinkage.
Love, Marlo

Monday, April 18, 2005 11:42 AM CDT

"Give me happiness, O Lord, for my life depends on you...I will call to you whenever trouble strikes, and you will answer me." (Psalm 86:4,7)

Another week, another sickness. This time it's Will who woke up with a yucky nose and cough. He is happily quarantined in his room with our new portable DVD player. I don't know how low Anna's counts are so I'm not taking any chances. We go tomorrow for lab work. If her counts are above 500 then we will be admitted Wednesday for more chemo. The last time we went inpatient Anna said she wished her friends would come see her. So if you are in town and not sick, please feel free to stop by Wednesday or Thursday for a short visit (except for naptime around 2-4). My parents are on their way to China for 18 days (my dad's way of celebrating his 70th birthday) so Richard's parents will be staying with the other kids during the day.
The liver transplant team here in OKC will be discussing Anna's case tomorrow.
I will keep you posted.
Love, Marlo

Saturday, April 16, 2005 10:42 AM CDT

"Happy are those who are strong in the Lord...when they walk throught the Valley of Weeping, it will become a place of refreshing springs, where pools of blessing collect after the rains! They will continue to grow stronger..." (Psalm 84:5-7)

Thank God that even when we are in the "valley of weeping" he sustains us "from strength to strength". I hope this time in our lives will be covered with pools of blessing as we allow God to teach us and conform us. Some days are much easier than others. Right now life is good. Anna's counts are low so she is tired, but we can live with the side effects since we had word this week that the chemo is working. The girls are playing dolls and the boys are out shopping for a new grill. Life.
Love,
Marlo

Wednesday, April 13, 2005 4:04 PM CDT

There has been "significant improvement" since the last CT scans. This was the best result we could have hoped for today. Hopefully after two more rounds of chemo, the tumors will be totally resectable (able to be removed). This should happen in early June. We met with a doctor at the liver transplant center this morning just to ask questions and explore our options in case they are unable to get all of the tumor. After the results today, we are very hopeful that they will be able to do the surgery without a transplant. Please continue to pray that the tumors will shrink. Richard will begin the screening to see if he is even a candidate to be a living donor in case we need one. We have had a lot to think about today and we are worn out emotionally from the stress. Anna's counts have gone back down so we will be staying home for a while. That's okay with me, but she is wanting to get out more. Thank you. Thank you. Thank you to those of you who have helped out this week with meals, childcare, and moral support.
Love, Marlo

Monday, April 11, 2005 7:03 AM CDT

Anna had a great weekend with her Aunt Shonda. The only new effect we noticed was an aversion to chocolate. She said it hurt her mouth and tasted minty. She has however developed a craving for carrots.
She knows about the hearing test today and is not afraid. She remembers it being fun the last time we were there. I am thankful for Jamie Spangler (a friend from church) being willing to help us out today and tomorrow.
I will let you know when we know something.
Love, Marlo

Friday, April 8, 2005 1:12 PM CDT

We just got back from the clinic. Anna did not want to be there and was not cooperative. When we got in the car she said, "Well, I'm never doing that again!" I think it's a blessing for her that she doesn't know what is in store for her, but it is a burden for me! I think God must be like that--not letting us see too far in the future because we would worry about it and miss the joy of today.
Anna's counts were good so that means we can enjoy the weekend and take her to the Redbud "Fun" Run tomorrow.
Audra tested positive for Strep throat this morning so we are taking the boys to be tested this afternoon. The oncolgist wrote a script for antibiotics just in case Anna shows any symptoms this weekend.
Monday's test will be easy, but Tuesday Anna will have to be sedated and she will have to drink several ounces of "contrast" before the CAT scan. Pray that she will be able to do this without having to force the fluids down using an NG tube. We will get the results on Wednesday. We will also be consulting with a liver specialist about getting Anna on a transplant list. We are praying that she won't need a transplant because that has life long implications, but we want to be ready if we need to.

Have a great weekend. Thank God for what you have TODAY!
Love, Marlo

Wednesday, April 6, 2005 9:50 AM CDT

Anna is doing great and has more energy. My parents came down from Wichita yesterday and we took the kids to the Cowboy Hall of Fame (see new pictures). Anna had a great time and we all enjoyed dining on Persimmon Hill. The effects of last weeks chemo have been minimal--thank you for praying.
Today Audra has a fever and sore throat. Pray that she will not pass this virus to Anna.
Anna has an audiology test Monday to see if the chemo has affected her hearing. Most kids who have Hepatoblastoma suffer some high frequency hearing loss because of the chemo. On Tuesday she will have a renal test to see if there is any kidney damage from the chemo. She will also have a CAT scan on Tuesday to see if the tumors are shrinking.
Thank you for praying.
Love, Marlo

Monday, April 4, 2005 9:47 AM CDT

We had a great weekend. Anna is up and about. She still cries every morning when she has to take her medicine and her first question when she gets out of bed is "Are we going anywhere today?" (translation: Are we going to the hospital or clinic today?) Our main concern right now is her weight loss. Her stomach hurts when she eats so she doesn't eat very much. I have called the clinic and asked about taking Zantac for the pain, so maybe we will try that.
When the other kids were getting ready for church yesterday she said, "I'm all better now. I can go to church." I ended up taking her for the last hour and we sat in the balcony. After church, she passed out Hershey kisses to some of her friends. She wanted to show her buddy Nate her "rainbow scar". I told her it wouldn't be very ladylike to lift up her dress at church.
Love, Marlo

Friday, April 1, 2005 8:39 AM CST

"He gives power to those who are tired and worn out; he offers strength to the weak" Isaiah 40:29

We are back from the hospital and I am worn out! Anna did pretty good. She was very fearful at first, but settled down fairly quickly. She was talking to people this time and even wondered if any of her friends were going to come visit her. She seems to be tolerating the chemo well, with not too much anti-nausea medicine needed.
My mom is headed back to Wichita this morning so we are on our own again. We really appreciate her coming and staying with the older kids. We are also thankful that Richard's parents live so close and are able to help at a moments notice.
We will have more chemo on the 8th, but until then we are just going to enjoy each day.
Love, Marlo

Tuesday, March 29, 2005 1:55 PM CST

Anna's counts are UP. Last week she was at 81 and this week she is up to 1,800. That means we will be going back in the hospital tomorrow for more chemo. She has been feeling so good the past few days that it is hard to go in knowing that it will make her sick again. Pray for her anxiety level. Today when we told her that we were going to the clinic she cried over and over "Please don't make me go." She doesn't know about tomorrow yet.
As we research this disease further we are finding that a liver transplant may be in our future. Please pray that we will get the most up to date information we can and that we will make the best choices for treatment.
Thank you.
Love, Marlo

Saturday, March 26, 2005 8:19 AM CST

"Praise the Lord, praise God our savior! For each day he carries us in his arms." (Psalm 68:1)

We had our best night in 2 weeks last night. Anna slept until 7:30am so we all got a good nights sleep. We are having some great moments this week. I am so glad that we did not go back in the hospital Wednesday. Anna has regained some of her strength and we have some precious memories on video.
I am excited about getting to go to church tomorrow on Easter. Anna will stay home with Richard because she can't be around crowds, but I will take the other kids. What a day of celebration! After church we will enjoy a wonderful lunch sent to us by our dear friend Mary Beth.
Thanks for everything.
Love, Marlo

Thursday, March 24, 2005 8:32 PM CST

We are thankful that Anna is not 13 or else she may have learned some cuss words besides "dummy" and "poo poo". She uses those quite often when she gets angry with us. I'm glad those are the worst things she can think of!
She had a great afternoon after I made her go outside. She ended up staying in the back yard for 2 hours--playing, having a popsicle, and hunting for Easter eggs. It was SO good to see her off the couch. She is still complaining of stomach pain, but it doesn't seem to be as often. (ie. every 2 hours instead of every 30 minutes)
Today she fed her pickles to the dog so I will have to find something else that tastes good.
Thank you again for all of the emails, cookies,phone calls, and letters.
Love, Marlo

Wednesday, March 23, 2005 9:10 PM CST

YEA! Anna's system seems to be cleaned out now. Hopefully she will rest better tonight.
I took the older kids to church tonight and someone there told me that her sister-in-law ate lots of pickles when she was taking chemo. When I got home I got out the pickle jar and Anna said "I want a pickle." She ate five! Please let me know of any cravings you or anyone you know on chemo has had.
Love, Marlo

Wednesday, March 23, 2005 5:06 PM CST

Not much change in Anna today. She is having a lot of cramping caused by one of the medicines she is on. Last night when I put her to bed she said "It is just too much medicine." Today she said, "My tummy is going to hurt forever." I sure hope not!
The main indicator in this type of cancer (hepatoblastoma) is the AFP levels in her blood. When she was diagnosed it was 290,000. Yesterday it was 36,300. That's a big drop, but the normal level is anything under 10 so we have a ways to go yet.
Thank you for keeping up with us. It means a lot to us.
Happy Easter!
Love, Marlo
PS. Anna chose to wear her Easter dress today. I will have Richard put the picture on the website tonight.

Tuesday, March 22, 2005 4:34 PM CST

Psalm 65:9 The rivers of God will not run dry...

We have had a difficult few days so I haven't written. Anna is in pain off and on around the clock. We aren't sure if it is caused by constipation or something else. I hate writing about it, but if Anna doesn't have a BM by Thursday we will have to admit her to the hospital to take care of it. We aren't going to the hospital for more chemo tomorrow because her blood counts are too low. We have to wait until her counts are over 500 and they dipped to 81 this week. The doctor was also concerned that she is not eating. If her appetite doesn't return after the constipation clears up then we will have to consider a feeding tube. That's a lot of different things to worry about all at once! We truly are learning to take it one day at a time. Please remember to pray for our other kids too. Audra is very insecure and Will said that he wants to be sick so that he can get lots of presents. Thank you for praying for us.
Love, Marlo

Saturday, March 19, 2005 10:07 PM CST

Today started out well. Anna woke up and wanted to go for a walk with me and she sang in her stroller the whole way.
She refused to eat yesterday and again today. I think the food tastes funny to her. She said the bread tasted "minty". Please pray that she would get her appetite back and that we would find things that she likes to eat. So far she has refused all of her old favorites. We did find out tonight that the Easter sweet-tart candy tasted good to her. She specifically asked for a pink one so Richard and I were opening up all of the plastic eggs I had stuffed for our egg hunt to try to find a pink one.
Today we have also faced the loss of her hair. It is falling out all over the place. I think by tomorrow it should be gone. She hasn't seemed to notice yet, but it was hard for me to see that happening.
Yesterday, her chemo went okay, but her blood counts had dropped so that she is in danger of infection. She can't be in crowds or around anyone who is sick.
We will go back in the hospital on Wednesday for inpatient chemo. Hopefully we will come home Friday or Saturday.
Love, Marlo

Thursday, March 17, 2005 9:30 PM CST

Anna had short bursts of energy today and was actually able to run an errand with me to the video store. It wore her out though, and she fell asleep on the way home.
Tonight when I told Anna that her aunt Shonda had found another little girl in Wichita who has what she has, she looked up at me and said, "Tape?" I think she thinks what is wrong with her is the tape on her tummy. She has also mentioned that you shouldn't eat too much candy or your tummy will get sick like hers did. I wish I could explain why we have to do all of this yucky stuff to her. We go back for more chemo tomorrow morning.
Love, Marlo

Wednesday, March 16, 2005 10:47 AM CST

Wow! If it's not one thing it's another. I was giving Audra a bath this morning and she said that she itched all over. Then she showed me some little bumps on her arms. I remembered the doctors telling me that it could be dangerous if Anna was exposed to chicken pox. I called my pediatrician right away (even though I knew that she was on vacation this week) and SHE CAME OVER! She said that the spots looked more like an allergic reaction than chicken pox, but to call her if they got worse. I'm so thankful for a doctor who is also a neighbor and who is willing to make house calls during her vacation.
Love, Marlo

Wednesday, March 16, 2005 8:23 AM CST

Psalm 57:1 Have mercy on me, O God, have mercy! I look to you for protection. I will hide beneath the shadow of your wings until this violent storm is passed.

Making a stubborn two year old drink a LOT of fluid in a short amount of time is not easy, but can be done. We avoided a rehydration trip to the hospital last night, but we will have to be diligent about making her drink from now on.
Love, Marlo

Tuesday, March 15, 2005 7:43 PM CST

If you check this tonight, please pray for Anna to drink more fluids. We are forcing her to drink every five minutes to try to avoid going to the hospital tonight for rehydration. We are all getting very frustrated. Anna is very strong and has said she is not going to drink. Of course she doesn't understand what will happen if she doesn't, but we do.
Love, Marlo

Tuesday, March 15, 2005 12:21 PM

Psalm 52:8-9 "I trust in God's unfailing love forever and ever...I will praise you forever, O God, for what you have done. I will wait for your mercies in the presence of your people."

How overwhelmed I am when I read the postings in the guestbook from all over the world and from people we don't even know! My prayer is that God will be glorified as we wait for his mercies in the presence of all of you who have joined with us in prayer for our daughter. We are truly unworthy, yet grateful, for the support and encouragement we have received.
Anna continues to complain of stomach pain and is weak and tired. We see glimpses of her old self when she plays with her sister. She is eating and drinking so we are thankful for that. We all are eating well thanks to those of you who have taken care of our food for the past 3 weeks.
Pray that Anna will become comfortable with her "new" body. The scars scare her and changing her clothes is a traumatic experience--bathing is even worse.
Thank you.
Love, Marlo

Sunday, March 13, 2005 7:10 AM CST

Psalm 46:1 "God is our refuge and strength, always ready to help in times of trouble."

God is my strength. For the last two weeks I have felt like I have been knocked off my feet. Today I am finally feeling like I can stand up again and face what is ahead.
Anna had her best day in weeks yesterday. She still doesn't want to get off the couch, but after I made her go outside she enjoyed it. Later she was playing in the backyard with her brother and sister and having a popsicle--something normal---something to celebrate!
Last night when I was tucking her in, she asked "Mommy, why did I have to go in the hospital?" It shows that she still doesn't understand all that is happening to her. She is still very afraid of her scar on her tummy and won't let me take off the tape (steristrips). We may have to wait until they put her to sleep for her next CAT scan on the 22nd to take off the tape.
Thank you for your love and prayers.
Love, Marlo

Friday, March 11, 2005 1:46 PM CST

Thank you for praying this morning. It wasn't as traumatic as I had anticipated--although it did take 3 of us to hold Anna down for her treatment. I am thankful that she is so strong! We will go back next week for more of the same chemo and then we will go back in the hospital the next week. Hopefully we will get to go home before Easter.
Many of you have commented that you don't know how we can face the road ahead and that you feel our pain. I know that you care and I read something this week that might help you...
"Don't forget when you imagine, all but see and hear and desperately feel, your loved one's pain, that there is one thing that eludes you. That is the grace that is being given, the Presence that is there." (Amy Carmichael--missionary to India)
We are depending on the grace of God to carry us through this.
Love, Marlo

Thursday, March 10, 2005 9:47 AM CST

"Trust me in your times of trouble, and I will rescue you, and you will give me glory." (Psalm 50:15)
Today I am trusting God for strength. Yesterday was a bad day so I didn't write. Anna still does not want to get up off the couch, but she has a much better appetite today. Last night she came and got me, but I think it was just because she was scared--not because she was sick.
We go for more chemo tomorrow which will be pretty scary. Please pray for us at 10am. It should take a couple of hours and then we will come home.
Anna's sister Audra does not want to leave her. She even stayed home from going to the zoo today.
Richard put some pictures on the website. The first one was taken on Monday when we were getting ready to leave the hospital. The others were taken our first day home.
I have been overwhelmed by the response to this website. I cried yesterday as I read all of the postings in the guestbook. Thank you , Thank you, Thank you.
Love, Marlo

Tuesday, March 8, 2005 9:45 PM CST

We came home yesterday after 12 nights in the hospital. After we loaded everything in the car and drove off, Anna asked, "Are we stealing these pajamas?"
She is weak and fussy today. When I asked her what she wanted to eat today she said cabbage rolls. It must be her Lebanese blood. Her great Sittie makes good cabbage rolls.
We go back to the outpatient clinic Friday for more chemo. So far she is tolerating it well--no vomiting. We are giving her medicine to help with that.
Please pray against infection. Will had a fever last night, but seems okay today. It will be hard to keep from spreading germs.
Thank you for your prayers, gifts, food, and emails.
Love, Marlo

Sunday, March 6, 2005

Please pray for Anna's spirit. We thought we were going home today and had even packed the car when the doctor came in and told us we couldn't go home because she wasn't eating or drinking. She doesn't want to get out of bed and since the Chemo started, she won't eat. She is angry and depressed. I don't know what to do except put some "real" clothes on her, pop her in the stroller (against her will) and take her outside for a McDonalds cheeseburger. That's what I'm going to try when I get back up to the hospital anyway.
Thanks for the prayers, cards, and gifts. I was feeling a little lonely today as I came home to an empty house to get more clothes. It was nice to read your encouraging emails.
Love, Marlo

March 3, 2005

I'm really not sure what day it is, but I think it's the 3rd. We are still in the hospital--8 nights so far and hopefully only 4 more to go. Anna starts chemo tomorrow. She has had a lot of tests the last two days--heart, kidneys, and ears. They are establishing a baseline so that they can monitor the effect of the chemo drugs. So far she is a very healthy girl--except for her liver. She is very fearful and sad and cries whenever any medical personel try to do anything to her--even if it's just listening to her heart. She doesn't want to walk at all so I had to make her do it today. The nurses commented on her temper--I told them I'd seen it before.
We had good news yesterday because the CAT scan showed that the cancer is confined to her liver so it is considered stage 3. The chemo will hopefully shrink the remaining tumor so that it can be removed in a few months. I can't think about another surgery right now so just pray for us the next few days that the side effects will be mild. If she gets really sick, we will have to stay in the hospital longer--and although it is a nice place, I don't want to live there.
The other kids are coping well. I talked to them at dinner about everything and they said "ooo..yuck" and made me stop. When I asked if they had any questions, Audra just wanted to know who had given her the balloons, the cookies, the stuffed animals, etc. that she had seen in Anna's room. We have been overwhelmed by the support we have recieved. Yesterday 30 men met with Richard at the hospital to pray and 30 women met at church to pray. We know that God can use this experience in many different ways, so we are trusting him to walk us through this fire and bring us out the other side.
Thank you for praying for us. We didn't know how many friends we had.
Love, Marlo

Saturday, February 26, 2005

Anna's surgery went well. They removed 1/4 of her liver. There are some other spots on her liver that they biopsied. Everything was sent off for testing, but it looks like a very rare cancer for children--heptoblastoma (sp?) We will get a diagnosis monday or tuesday and will start chemo after they decide what protocol to follow.
She is on morphine today so is not very alert. She has lots of tubes, but hopefully those will start coming out tomorrow. Today was difficult when we woke up and found that it wasn't a dream and was really happening.
We have been surrounded by our church family--20 people sat with us during the surgery and 60 have been by to visit during the last two days. Our doctor has been great and the nurses at the Children's hospital are great with kids--imagine that. We were admitted to another hospital Wed by our pediatrician after what we thought was pneumonia wasn't responding to treatment. They did a blood test and found that she had a high liver count so they did a sonogram and found a mass, so they did a CAT scan and found the tumor. It has all happened so very fast and was so unexpected we are just now getting over the shock. We are very thankful for our pediatrician who ordered the extra tests because she just felt something wasn't right. (I thought it was a virus and that we didn't need to be in the hospital!) We are also thankful that our surgeon was in town yesterday since he left today. He says she is doing "better than normal" after the surgery and that she looks great.
Love, Marlo

Friday, February 25, 2005

A mass was found in our two year old daughter Anna's liver yesterday. Surgery this afternoon. Please pray.
Thank you,
marlo and richard

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